Life with M.E., Fibromyalgia, study, and stress!

Holidays!

2010-12-04T15:39:00.000+11:00

Holidays!I finished orientation yesterday, and today is the first day of my summer holidays. Or, as it's now called "study break"... I have a tonne of holiday homework, so I'll probably end up studying a lot. Before I started orientation, though, I went stationery shopping! Here are the things I bought.

The only textbooks that were in stock: 'Stasiland',

'Aria', 'Emma' & notes for 'The Tempest'. All for Literature. =)

I got some star shaped paperclips &
a box of metallic coloured clips, too

Purple binder folder, notebook, plastic envelope and display book for Legal Studies

Matching binder folder & notebook with pink
plastic envelope and display book for Literature

I got a new pacer, fluorescent sticky tabs, write on sticky tabs,
a mini stapler as well as a mini pair of scissors.

Stationery and textbooks:
I colour code all my stationery. Green is for German, blue has always been for maths, and this year I chose pink for Literature and purple for Legal Studies. The rest of my textbooks should be in soon, I ordered them a fortnight ago, and I can't study properly until I have them all. In fact, I can't do anything for Legal Studies until I have the textbook.

I've started to read 'Emma', though. I really dislike Jane Austen, and I've tried to read 'Emma' three times in the past few years, but have never persevered. I did read all of 'Pride and Prejudice'. It took all of my willpower to finish it, and I've given myself motivation to finish 'Emma' this time: I'm not allowed to read any other books until I've read it! I'm dying to read 'Stasiland', because my detailed study on the DDR and post-war Germany from 2009 will really help, plus the book looks great... But I won't. Not until I finish 'Emma'. And it's killing me to have to delay starting Shakespeare, but it's what I need to do.

Orientation:
I've got nice teachers for my subjects, and they understand my illnesses. Hopefully there won't be too much homework, but if there is, they should let me do less. I work best when only the necessary tasks are compulsory, so there's less pressure on me. But that's not until next year! I'm part time at school, still, and my Literature class is really small; there's only 8 of us. Legal Studies is a bigger class, and I think I'm the only one who didn't do it in Year 11. It's not worrying me too much, though, as it's not very difficult. There's just quite a lot to memorise.

I feel a lot happier and more motivated now that I'm back at school. Every time I say to a doctor how ill I am, or how much pain I get after a full day of school, they suggest I drop out. I'll never drop out, ever. This is my reason to get up each day, and to keep pushing through the pain and exhaustion, and every doctor suggests I give it up. Well, I won't. I've lost too much already, and it's ridiculous to "listen to your body" when you're in my condition. If I did, I'd never get out of bed, and then my doctors would be even more annoyed! It's great to be at school again, though. My year level is really nice, and they've been so welcoming. I was even included in the KK, and the school captain ensured I got my circular about the Year 12 hoodie in time! Next year will be a really good year, even if I'm in pain and constantly exausted. It's my last year, and I'm determined to make the most of it.

Christmas...
We put up our Christmas tree on December 1st, as we do every year. I took a picture on my iPhone:

Our Christmas tree with all the decorations on!
We've got to get some more lights. One pack isn't enough.

I've never got what I truly want for Christmas: I want to be healthy. I want there to suddenly be a cure for all my spoonie friends, so no one ever has to suffer. I'll take the next best thing, though: an improvement in my health. I'd love that, especially if it helps me complete high school! I usually just get things to make my life a bit easier - an iTunes voucher so I can buy more music for days when I'm in bed, or DVDs to watch, or, when I was healthier, art supplies and sewing supplies. Things like that.

Small things make me really happy, though. Sometimes it's just being remembered, which sounds odd, but if you're part time at school, people often forget about you, so it's things like being included in a KK, girls inviting me to walk with them at lunch, or my extended family understanding my illnesses and actually asking how I am, visiting me in hospital, or calling me. (But that doesn't happen. People get tired of the chronically ill, but they never think that I'm sick of being sick!)

One thing I've taken from my experiences with people and my illnesses is that family won't always be there, so you need to build a support network of close friends, ones who'll always be there, no matter what. I'm working on that, but it's so hard to keep friends if you can't do what "normal" teenagers do!

Thanks for reading, and I hope I'll be able to post a bit more regularly over the holidays. My laptop has been completely reimaged and restored, so now it runs brilliantly... I've also got Windows 7 now! Leave a comment if you feel like it! =)

A distraction!

2010-11-04T00:56:00.000+11:00

Shopping trip:
On Monday I went to our local shopping precinct, which is basically a street filled with different stores and cafes, etc. First I went to Smiggle, and bought a really cute pencil case and a weekly planner for my return to school, plus some more fine liner pens in different colours to use on my maths cheatsheets and for school, too. Then I went to look at Portmans, and they still have some lovely jewellery! I found a necklace and bracelet and a bag; they'll all go perfectly with the summery floral dress I bought earlier. I bought some other necklaces from Portmans. I also had a look at Sportsgirl, but their jewellery wasn't very nice, and I couldn't see anything I needed. I looked in Priceline for nail polishes before I went home, and I bought a fuchsia, a sparkly turquoise, and a shimmery pearlescent colour. I redid my nails in the turquoise that night, and the colour really cheers me up! It's amazing how much little things can improve your mood when you're really ill.

I saw quite a few things that I loved at Portmans, but I don't need them, so there's no point in buying them! I did see a lovely sequined bolero jacket and an adorable (yet modest) formal dress in their catalogue, so after exams I'll go in and try them on. The jacket is thin, so it'll be ideal for Valedictory, which is in summer. I've got a dress already, and it'll match. The dress is at the tailor's, 'cause I need to get some sleeves/straps put on it. I'm just not comfortable in a strapless dress. I'm going to see if I can use my savings for the dress; I think it'd be nice to have a second classic dress that never goes out of style!

So, here are the purchases! (Apologies for iPhone picture quality.)

These are from Smiggle:

My new pencil case!
It has press studs in
the middle, so there
are three sections

My pencil case opened.
There are two outside
zipper sections, plus the
one in the middle.

My new weekly planner.
I love the pattern!

The inside of my weekly planner.
I can use it next year, 'cause it doesn't
have dates, only days of the week.

And here's the jewellery and bag from Portmans:

The necklace and bracelet that go with
my summery floral dress

A close-up of the bracelet

The bag I got to match my bracelet, necklace and summery dress!

This necklace has dark
blue beads and leaves
around it. It's quite long

I love this one, almost as
much as the one with
the charms!

I love the charms!

These are the nail polishes I bought from Priceline. I'm wearing the turquoise one now, and I think I'll try the fuchsia next. I'm not sure about the shimmery pearlescent colour, (it probably looks white in the pic!) but it was the only nail polish that was glittery/shimmery and was a nice colour. (ie: not bronze or grey.)

I really hope I can go to David Jones soon to look at their OPI range. OPI has the greatest colours, and so many are glittery. (I've got the iPhone app!) Maybe when Orientation finishes, in December

I felt like a break from studying and revising. Also, I'm feeling kinda spaced out from my OxyNorm (at least it's working) and I'm exhausted, so I figured I'd write a blog post instead of pointless study. I have an exam on Friday at 9am (ugh) and one on Monday at 11.45am. After that, I'm free! Anyone have any tips for summery/glittery/bright OPI colours? Thanks for reading! Alex. xoxo

Purchases!

2010-10-25T03:22:00.001+11:00

Shopping!!

Remember in a recent post I mentioned that I'd bought a summery dress among other things? Well, here are the pictures of the things I bought that day! In addition to the coral cardi, I also got a white one. =)

Summery, floral dress which is super comfy!

I'll wear it at Christmas, if weather permits. <3

Coral cardi with 3/4 length sleeves.
A vibrant colour that makes all my
outfits look much brighter! Purple
looks great with coral.

I exchanged my faulty wallet for this one; it has a lovely
design on the front, closes more securely, and has
plenty of space for doctor's cards/reward cards, etc.

I think I chose the
one on the right

A trip to a shopping precinct!

My completed manicure!

I went for a manicure the other day (Mum thought I needed cheering up after being ill for so long.) I chose a nice, shimmery, glittery colour, a sort of lightish shade. Unfortunately, I chipped it a bit on one nail, but you can hardly tell. I ordered the nail polish in, as well as the one I had for my last manicure, OPI's 'Merry Midnight', which is a lovely purple with sort of copper flakes and sparkles. (Yup, I really like sparkly and glittery things!)

After the manicure I went to look at a few stores. I found two things: a green long top/dress, to be worn with leggings, and a beautiful silvery sequined top that I could wear to, say, a party, with nice flats and dark blue jeans. It needs to be altered, though. I'm short, have unusually narrow shoulders (so it's falling off my shoulders) and I have child-sized feet! It's impossible to find me clothes. Anyway, I'm too ill to really "dress up", like most girls. To put on a formal dress and sky high heels would exhaust me so much that I'd never get to the party! (And I can't walk in heels, lulz.) So, pics!

My silver, sequined top. I never show my

upper arms; I only wear tops or dresses

that have sleeves, but this is lovely!

I'll use it for more "dressy" occasions.

Green top/dress, which I'll wear with black
3/4 length leggings. It's the perfect item
for spring/summer, and it's comfortable!

Then we went to another local shopping precinct, 'cause Mum needed to pick something up from a clothes store. I found some lovely spring/summer pajamas at a store, as well as super comfy cargo pants. (Adjustable elastic waistband FTW!) One set of pajamas came with a top that didn't fit, so I've layered it with a plain white t-shirt, and it looks pretty.

I went to another store, a really cheap one, and found a super loose, yet comfy t-shirt which is ideal for study or just lounging around the house.

There was a special on singlets at another store, so I got 2 white ones, a light blue one, and a black one, naturally to be worn under things! ... PICS!

Pajamas with alternative top.

Second set of pajamas.

White t-shirt with pajama top that doesn't fit
layered over it.
Do you think it'd look
good as an everyday outfit?

Loose, comfy t-shirt I got for $10 at Cotton On.

The singlets from Dotti: 1 black, 2 white, 1 aqua

Thanks for reading! I'd love feedback! What sorts of things do you wear in summer to keep cool, but also feel comfortable? Any opinions on the grey/silver singlet I've layered with the white t-shirt? Aussies: where's a good place to find reasonable priced t-shirts with pretty designs, or some loose t-shirts? =)

Hope you're all as well as possible. Alex. xoxo

Update!

2010-10-25T00:13:00.001+11:00

Hi all!
It's past midnight on Monday as I'm writing this, but as I'm wide awake, I figured I'd write a blog post.

Maths, Study & Revision:
On Saturday I had maths tutoring from 2pm-5.30pm, then studied from 5.40pm-8.50pm. I rested in bed until midnight, when I got up and decided to revise some more, and specifically, to complete all my required cheatsheets. So I worked until 3am when I developed terrible nausea (which needed Ondansetron) and a shocking headache, which became a migraine later.

I can justify writing this post because: I have completed every cheatsheet for my maths bound reference.

All that's left is a cheatsheet with examples of how to draw various graphs, etc. and choosing which solutions from past paper exams to include. I also have to ask my teacher to come out to my house to help me with my calculator; often, when I try to solve complex equations, I get an answer like: 72e^4x@5. Which is of no help whatsoever!

Terrible luck!
On Saturday 16/10, I woke with a terrible headache, and later developed severe nausea which required Ondansetron. I still completed maths tutoring and studied, but the next day I woke with a terrible virus: cough, aches, pains, fever, chills, runny/blocked nose and an upset stomach. I lost 2kg in 3 days, simply because I couldn't eat! I felt better on Friday 22/10, and had tutoring on Saturday, as previously mentioned.

Unfortunately, today I feel worse. I'd say it's a combination of things: no sleep until 8am on Sunday, due to the migraine, getting only 4hrs broken sleep, still slowly recovering from the virus, and switching meds. So the entire week I was incredibly ill, (bed bound & requiring help to move from one room to another) I was unable to do any study. Which is why I compensated by studying for 9hrs on Saturday, as mentioned above.

Unfortunately, the marathon study session means that I'll be incredibly exhausted for quite a while, but I must press on; I have many past paper exams to do. My real exams are on the 05/11/10 and the 08/11/10.

Medications:
MS Contin wasn't working very well, even at 40mg twice a day, so my doctor has switched me to OxyNorm. Would you believe that anorexia is a very common side effect of OxyNorm?! I'm already at risk, due to my disordered eating, (apparently) severely distorted body image, and my history. I went through a stage of "starving" myself. And I lost 12kgs in 8 weeks. So I think my Mum will be watching me, because although I want to get into shape, (which is impossible when I'm this ill) I don't need another illness, or more complications, or more doctors! I've been on it for a few days, and I think I'll need a higher dose; 10mg twice daily just isn't cutting it. But it's 100000000x better than MS Contin!! If only they'd give me something to sleep! ALEX. NEEDS. SLEEP. (It's nearly 4am! ... This is an edit.)
I think I'll write a second post so that these are easier to read. Please comment, if you feel so inclined; I love feedback, and it cheers me up when I'm stuck in bed to see an email saying "new comment" =) Take care. xoxo

Hi!

2010-10-15T01:19:00.000+11:00

I'm back!
I was finally able to log on to my laptop for the first time in ages. (Seriously, the last time I could use it was when I wrote the previous blog post!) So, I guess an update first, right? Here goes:

The goLITEBLU*** was a disaster. After two migraines that lasted 7-10 days, my sleep clinician said to try the goLITEBLU again, but if I got another long migraine, then I shouldn't keep using it. So I tried it.
After 4 days of a migraine, my Mum decided to take me to the ER. (I didn't want to go, as I figured they wouldn't help me if MS Contin wasn't working.) I spent hours curled up on a couch, (not at a children's hospital anymore >.<) before I finally got seen by a doctor and was given a bed. I had to fight for morphine, they wanted to give me Largactil, but that causes me HEADACHES!! So I had IV re-hydration, an injection of morphine and an injection of Ondansetron. After 9hrs in the ER, including wait time, (at a private hospital!) I went home. I had McDonald's drive through on the way back, to celebrate being migraine free for the first time in nearly 2wks! ^.^
I'm no longer using the goLITEBLU. I can't believe the sleep clinician didn't even ask if there was a family history of migraines before telling me to use it. (The brochure warns of initial nausea and headaches.) There's migraines on both sides of the family, plus my Mum, my father, younger brother and I get them!
I got a virus the next day, (Wed, 06/10/10) so I was on bed rest for the next 5 days. Except for the Saturday, (09/10/10) when I had 3hrs of maths tutoring. I couldn't stick to my sleep routine, let alone sleep hygiene when I felt so ill!

This is really worrying me.
I'm becoming more disabled each day. I wasn't able to study until this Wednesday, and I sat my 2 hour 20mins practice exam. (Not incl. reading time of 15mins!) I finished in the allotted time, felt I couldn't take any breaks, and didn't move from the same position the whole time. It's what I do when I'm hyper-stressed. So, of course, I finish, correct it (and find I got a damn good score, considering I can barely study) and then move. And I nearly collapsed! My whole back and neck had seized up and were intensely painful, plus my left hand was cramping and shaking. I wish I could sit my maths exams on laptops; I never felt this bad after my German practice exams/real exams last year! So I had a really hot shower, which helped my chills and pain, plus I wasn't feeling so much like I had the flu by then.

I seem to feel like I've been hit with a flu as soon as I've pushed too far past my limits. It's scary; I worry every time it happens that it's an actual flu or virus! I've barely been able to get out of bed this past week. And small things, like helping out by making food for my Mum and younger brother, (they've both had a terrible flu until today) or getting myself dressed make me absolutely exhausted, dizzy and weak. And not my normal level of exhaustion; this is the sort of exhaustion that makes me wonder if I can keep living, or if I'll just end up trapped in bed. Forever.

These illnesses, their severity, and the fact that virtually no one believes that Fibromyalgia or ME/CFS exist, all terrify me. If people understood, my life would almost be worth living.

More study. Ew.
It's past 1am on Friday now, and today I really need to do cheatsheets for Linear, Quadratics, Cubics/Quartics, Higher Order Polynomials/Gallery of Graphs. I can use bits and pieces from older cheatsheets, but I do need to do a Quadratics one from scratch, and maybe redo the Linear and Cubics/Quartics one.

... But I also ~~want~~ need to escape my bed, and go out. I hate being sick! Words can't describe it anymore. Hm... I really, desperately need to get my fringe cut, so maybe I could look at a few stores after? I'd rather do that than wind up in heaps of pain 'cause I studied too much!

***The goLITEBLU is meant to regulate your body clock, so you sleep, wake, and eat at normal times. It also should make you "happy and energetic." It's given me migraines, Ondansetron-worthy nausea, and made me so sleepy that I've had to triple my dose of wakefulness meds, on my doctor's orders. It also made me starving all day long, but then made me feel sick as soon as I ate.

Thanks for reading! I hope I improve soon, so I can study, and maybe even blog. I'm dying to take pics and post them. (Pics of my recent purchases, including a summer-y dress!)
Alex. xoxo

I'm not dead... Yet!

2010-10-01T00:15:00.000+10:00

Hi everyone!
It's been quite a while since I last blogged, and to be honest, I haven't used my laptop for nearly a fortnight. I decided to use it tonight basically because I wanted to watch a movie, and I was too tired to sit in the lounge room. I've had a headache since Saturday, and when I rang both of my doctors the other day, they said I could stay in bed and sleep whenever I needed to, until this headache goes away. I also don't have to use the blue light while the headache is here, either. There's something that's odd/worrying: no one has ever heard of severe ongoing headaches and nausea being side effects of using a goLITEBLU, or incredible sleepiness. I've had to up my wakefulness meds twice simply to keep myself awake after using the blue light! The sleep clinician said if I get another headache like this, (ie. longer than one day and no painkillers work) then we'll have to stop the blue light treatment. I think they're worried... =|

An outing!!
I did manage to go out on Sunday. You know my wallet I got? The one I posted pics of in the last post? Well, it broke. So I took it back, exchanged it for another one, and bought some clothes, too. I got a pretty summery dress! I'll take some pics and post them when I'm feeling better, though. Guess what? I got a great wallet; I chose a black one, a different style, one that was more solid, then went to look at clothes. When they were putting through my purchases, they put a brown wallet in the box. I didn't notice until I got home! So I'm waiting until Mum has time to go back and swap it... I am so lucky I kept my old wallet, otherwise I'd be without one!

A short health update:
I'm feeling sicker and more drained with each passing day. My sleep is getting worse, and I'm needing more. Of course, I'm not allowed to get the sleep I need; I have to go to bed at 3.30am, or 2am at the earliest, and get up at 12.30pm. Currently, I need 12hrs in bed to avoid intense pain and nausea. So I'm annoyed. And this headache has me in a worse mood than usual!

I hate distance education. So. Much.
My homework for this week and next week hasn't arrived. I've contacted my distance education teacher 3 times, and she hasn't responded. I'll work on my cheatsheets as soon as my head is better, and maybe work through some Checkpoints questions. But if I'm too sick to complete the practice exams, whenever they get sent out, it's not my fault. They can't fail me, and it's their problem. So there.

What is wrong with this country?!
I had maths tutoring while the AFL Grand Final was on last Saturday, and it was a draw!! I think that's the third time it's happened. Ever. So there's a "replay" (rematch) this Saturday, and my tutor can't come, so I'll probs watch it. Provided I'm feeling better! So, we couldn't decide on a government, the Grand Final was a draw, and they announced the wrong winner on ANTM. (Australia's Next Top Model) Australia, no more decisions for you! It's been a year of indecision, to say the least.

So that's it for the moment. I really hope to post pics of my purchases ASAP, but I'd rather have all my cheatsheets and hw completed. Just for peace of mind. I hope everyone is as well as possible! Alex. xoxo

Government!

2010-09-07T18:12:00.000+10:00

Government!
Today, the Independents, Oakeshott, Windsor and Katter announced who they would be supporting to form Government. Oakeshott and Windsor are supporting Labor, along with Wilkie, and the Greens MP Adam Bandt. This gives Labor a 76-74 majority in order to form Government. Katter announced he was supporting the Coalition earlier today. I think it will be an interesting time, as having a Greens MP means that there should be more focus on key issues such as an ETS, and hopefully the rights of asylum seekers, etc.

I don't know if I've mentioned that I wrote to Julia Gillard (okay, emailed from my iPhone) about the support and research that the ME/CFS community need in Australia. Anyway, I got a response shortly before the election, in writing. Unfortunately, it wasn't from an MP, but someone who works in the Department of Health & Ageing, as the Government was in caretaker mode due to the election being called. I called the person, who was a nice guy, and he said to write again, after the election, to whoever is the relevant person, basically saying the same things. This person had pointed out that ME/CFS Australia was a useful resource, and I said it was, but we need more support, and above all, awareness. I'm going to make a request for an MP (preferably all of them) to either wear a blue or purple ribbon on May 12th. Politicians wear awareness ribbons for everything from the violence against women campaign to the bushfire relief fund. I don't think it's a big ask.

An outing:

Sunday was Father's Day, and I went out with my father and younger brother to a shopping centre, and got a new wallet, as my old one was falling apart, and also to take my father out to lunch. We went to the Pancake Parlour, and it was really busy, so I found the whole experience very tiring and overwhelming. Still I was happy with the wallet I got, and I saw a few different things in the store that I liked. I'm hoping to go back with Mum this week. Mum actually gives opinions on how something looks! Clothes shopping, etc. with my father is pointless. Like most guys, he'll say "that looks good" to anything, just so we can leave the store!

Inside view of my new Roxy wallet.

Outside view of my new Roxy wallet.

My new pink lip gloss.

I also went to a shopping centre last week with Mum, as she wanted to pick up something from the Clinique counter. I got a lip gloss, and it's a nice shade of pink. I haven't used it yet, but I looked at the testers, and it'll really suit me. It's sort of a pen-type one, you twist one end, and the lip gloss is pushed up to the brush. It's not messy, and it's easy to use.

After my Year 11 formal (2008) I got some make-up, a first for me, because back then I was practically full-time at school, and feeling really healthy. I was also keeping up 3 extra-curriculars, plus work with a charity. I used the make-up once after I bought it, for a family portrait. I've never needed it since! As it's a powder/mineral foundation, or whatever you call it, it should last for ages. So it's not like I've wasted money, I'm just annoyed I never really got to use it.

Back to school soon!
I've been in contact with my school, and I've selected Literature and Legal Studies as my two subjects for Orientation (in the last two weeks of November) and for next year. (My final year of Year 12.) I'm really looking forward to it, and the school should have reinstated my email account by now, so the prospective subject teachers will be in contact with me. (The Legal Studies teacher is the same as always, but there are two teachers who could take Lit.) The great thing is that the teachers can email me before the booklist is finalised and released, with a list of possible books. That way I can read the books, if we've got them at home. (Mum studied English Lit at uni, so we've got a massive home library.)

I hope we don't have to read Jane Austen. But I'm really looking forward to studying Shakespeare. And I'd love it if they switched Bruce Dawe's "Sometimes Gladness" collection of poetry from English to Lit. Bruce Dawe is very accessible, and has written some lovely poems. I find Shakespeare accessible and quite easy to understand, which has astounded everyone, including my Mum. You'd think the brain fog would affect my ability to process Shakespeare or poetry, but it hasn't! It's really affected my memory and attention span, though. The two teachers who might be taking Lit have both taught me before I was really ill, so they are more likely to be lenient with my homework load, marking, and already understand ME/CFS. I'll just have to explain Fibro to them. The Legal Studies teacher also taught me earlier, so that's good for the same reasons.

Also...
I'm not sure if I'll be able to blog a lot in the near future, as I have exams in the first week of November. This week I have to sit a 110min practice exam. Next week I've got the probability analysis assignment, and then I have practice exams basically every week until the end of October! I did manage to get the probability cheatsheet done, but I ended up doing it on the weekend with my maths tutor.

I've got to do a cheatsheet for every topic in maths: calculus, trigonometry, linear functions, quadratic functions, cubic functions, quartic functions, transformations & drawing of graphs, matrices, and of course, how to use my CAS calculator! I think that's about it, and luckily I've got cheatsheets to draw on from Year 10 and 11, but I have to add a lot to them; this subject gets a lot more complex in Year 12!

So, if I suddenly don't blog for a fortnight or something, the odds are I'm exhausted from study, overwhelmed from study, or can't study or do anything! (Hopefully it's one of the first two, I don't want to be too ill to study.) If anyone has study tips, or ideas on how to relax before exams, I'd love to hear them. I have sat exams before, but maths always causes more anxiety for me, as it's always been my weakness.

Thanks for reading, and I do welcome feedback! I hope I can keep blogging next year, despite the fact I'll be studying two subjects. Alex. xoxo

Health update

2010-08-29T21:12:00.000+10:00

Health update:
It's been a while since I've blogged about how things are going, so I figured I'd write an update, for those who are interested.

I stopped the Lyrica quite a while ago, maybe 5 days after I started taking it. It wasn't helping, at all, and the side effects were annoying. I'm now on MS Contin, which didn't help at 1 tablet a day, helped a little at 2 tablets a day, and one day I had unbelievable pain, I couldn't move, so I tried a third. And my pain just disappeared. I did feel a little disoriented/spacey, but anything is worth it if I'm pain free! I also slept very deeply for the first 3hrs that night. So I need to contact my doctor [consultant physician] again, (we're working out the right dose, increasing in the smallest increments possible as necessary) and let him know that 3 tablets a day, spread out from when I first get up until late evening is enough to kill pain.

Sleep hygeine/getting up at the same time each day:
I'm still getting up at 1pm each day, because my sleep pattern hasn't adjusted yet, and I've had to get up at different times the past week (9am, 11am, etc.) so I think my body is just really confused as to when it's meant to sleep! I'll move it back to 12.45pm or 12.30pm as soon as I've adjusted to the change. It's really difficult, because my meds that are supposed to keep me awake don't work well enough anymore. I've never taken them daily, because I've never had enough, but now I'm just so desperately in need of sleep that I could fall asleep if I lay down, even for a minute. So I can't lie down, unless my pain is really bad, enough that I can't sit up or move.

I doubt I'll ever be able to get up at 9am every day. I know I'll have to get up early some days for school in November and next year, but it's different; if you're getting up at 9am when you're at home, there is nothing to do. I'm too sick and sleepy/exhausted to study, which leaves watching tv or going on the internet. They're all nice things, but from 9am-11pm? No thanks. Even if you add in reading, writing and tidying my room, I'd be so tired that I'd need a nap. But I'm not allowed to nap. I think on weekends I should be allowed to sleep in, until midday at the latest, but eventually I'd hope to get up by 11am.

Weird. Why am I more awake some days than others?
I seem to be more awake and alert when I know I have to do something/be somewhere. For instance, yesterday I got up at 1pm, took my meds, made my bed, got dressed, etc. and was sleepy the whole day. Today, I had maths tutoring, and I got up at 12.45pm, was a little awake and alert before my meds, and am still quite awake now, after 9pm. It's the same with school, (except the 6.30am starts) I only struggle with breakfast, because I'm not hungry in the mornings, but if I don't eat a lot, I'll be starving in the middle of my first class. I am allowed to eat in class, but it's awkward... Like I'm drawing more attention to myself. So I eat a big breakfast (usually curry and rice, or spaghetti bolognese, or something filling) and then am so stressed by school that I can usually only manage a bit of rice or a sandwich with some water for the rest of the day. Then I get home, and am de-stressed, and immediately starving!

Pain:
My pain has got worse; I read in the paper that it's been the wettest year since the drought began, and it's a colder, more bitter winter than last year. This explains my pain. But now my knees seize up, and my ankles hurt terribly, and I get awful rheumatism-like pain in my limbs. The joints are the worst. I really hate leaving the house now, because as soon as I do, it's instant pain. And the pain doesn't go away until I'm really warm and have taken enough painkillers. A lot of nights it keeps me awake. Thankfully we got an inverted heater/cooler installed in my room, and we got a grant to cover part of it, (as I can't regulate my body temperature) so now I can warm up my room and stay warmer. My new quilt is also super warm, and all of these things help with the pain. Heat packs are great, too.
Does anyone else get this sort of pain, or have tips to minimise or cope with it?

Sleep...
My sleep hasn't figured itself out yet. Some nights I sleep okay, other nights I'm awake until 6am, then wake hourly, not to mention when my younger brother gets up and gets ready for school. That's usually from 7.30am-8.40am. If I could sleep from 11pm, it'd be fine. But I can't, and I need more sleep than I ever have: 10-12hrs a night, just to minimise my pain and so that I'm not sleepy all day. I just hope my sleep will improve before my exams!

Well, that's about it! If there are any other things you'd like to know about, comment, and I'll respond. Thanks for reading! Alex. xoxo

An award!

2010-08-29T20:45:00.000+10:00

I received an award from VeeVee Bloget! (Here's her blog!) I really appreciate it, and was stunned to receive it.

VeeVee's blog award, I chose this design.
I love it! =)

Lately I'm not sure that many people bother to read my blog, and I've never really thought of myself as a halfway decent blogger... I just write about things that have happened lately, or what's on my mind, although lately I've been trying to add in posts with pictures and happier themes, ie. Things other than my illnesses.

Let me know if you think there are things I could add or change on my blog, as always, I love feedback! Alex. xoxo

Our garden

2010-08-23T19:17:00.000+10:00

Our garden:

We had some landscaping work done a while ago, those of you who follow me on Twitter will remember my complaints about the noise! Well, here are some of the results:

New garden bed, with lots of plants & flowers

The only foxglove in bloom & some other plants.

I got to choose the colours for the flowers in the garden bed pictured above and to the left. I wanted colours like white, yellow, blue, purple and pink. I don't think there were any blues, but the foxgloves are white, (I presume; the one in bloom is) and I think there are some yellows, pinks and purples, too. It'll be a surprise when all of them bloom! I must post pictures then. =D

The new decking is great, it's a lot longer than our previous one, and to the side it has wide bits of decking that are like steps, yet are big enough to sit on. Mishka had a lot of fun running up and down them, although she is a bit sad that she can't access her hiding places under the house. (The side decking steps blocked off the little entrance she uses.)

We also had some turf laid, as the grass we had was in a very sorry state due to the long drought. This year is on the way to becoming the wettest year in a long time, which explains my increased level of pain. I think this winter is much colder than last year's; I am certain our heating bills have increased exponentially!

Some of the new decking & another garden bed, with plants.

I'm really looking forward to spending some time outside, on the decking in spring or summer. I might even study on the outside dining setting! I do need to spend some time in the sun, and I plan to, as soon as I adjust to having to be up and awake during the day, and as soon as my medications work properly, and definitely when it's warmer. But the garden looks great, and I think it will cheer me up. The landscapers chose plants that don't aggravate allergies, and I haven't had any allergy flare ups in the past two days or so. *Touches wood*

Study and exams:

My TI-89 Titanium calculator.

My exams are in November, and I've a maths analysis assignment soon. This is Week 9, and I'm studying more probability. (I've got a bit of the set homework left, I'll attempt another question ASAP.) Some of it is difficult, while other parts are just a matter of following steps, or applying formulas/using a graphics calculator. Week 10 is probability again. For something different, in Week 11 I start exam revision. I have to complete a practice exam each week, and mail it. Week 12 is the probability analysis assignment. I find probability, trig and graphs to be the most difficult topics.

The page of homework for Week 9

I really need to start making some cheatsheets; I have some from Year 10 and Year 11, but because the subject has changed since then, I think I'll make lists of everything I need for each subject, step by step instructions, formulas, how to use my graphics calculator, and more. I'll also highlight different sections, and colour code them. I then have to make this into a "bound reference" for my long exam, but I'm not allowed to used sticky tabs or anything to mark chapters/sections, so I'll need to work out a system.

Mum is making sure my teacher comes out soon, so I can go over things I don't understand, ask for past exams, exam techniques, how to put together and make the best of a bound reference. (I've never used or made one before, only double sided A4 cheatsheets for tests.) I hope to maintain a B or B+ average, so that will give me a bit of leeway in my exams. I tend to do badly under pressure and time constraints, so my marks always decrease in exams. It's a pity, but I really only need a pass mark for maths to get into Accounting, although a higher mark would be much better and definitely preferable!

My calculus cheatsheet from Year 11

Mishka:

Mishka sitting on my bed

I got Mishka after a hospitalisation in 2005, the year I had off school, because the social workers and nurses suggested I get a cat or a pet of some sort to keep me company at home. Mishka was really in a bad way when we got her; she'd just had kittens, even though she was only 6mths old herself, so her fur was patchy, and she was very thin. I carried her around the house for the first month, so she's a bit spoilt!

Mishka has been great company, and it's nice to have her with me, even if she's asleep while she's sitting with me on my bed, or on my lap, purring or dozing as I watch tv. She's been very healthy, which is great, because I'd be devastated if Mishka got sick. I have a hard time taking care of her, so unless I'm awake at 5am or 6am, Mum will let Mishka outside, and put her food bowl out. I try to bring her in each night, but she doesn't like to come indoors anymore, so I've taken to bringing her food bowl indoors at midday or 1pm, and then Mishka has to come inside sometime, as she'll get hungry, eventually. We don't have a catflap, and if I leave her food out for too long, all the neighbourhood cats come and eat it.

Mishka is timid, scared of strangers, loud noises, and sudden movements. But she's very sweet and cuddly. I love that it's so easy to make Mishka happy; I just have to feed her and pat her, and make sure she's got somewhere comfortable to nap. I wish everyone were that easy to please. Mishka likes hiding in small spaces, and it's adorable to see little white socks poking out from under a bed!

That's all for today, I hope you liked the post. I might write one about my first time voting at the federal election when I feel a bit better. I've been up since 9am today, and only got about 5hrs broken sleep, so I don't feel well. I might write a health update soon, too. Alex. xoxo

New things!

2010-08-20T15:08:00.004+10:00

New things!

Doona, doona cover and more:

Close up of the pattern.

My doona, doona cover,
matching pillow case & teal runner.

Yesterday I went out and got a new doona cover, it's navy blue/royal blue, with an aqua stripe surrounding the patterned part of it. I got a new doona to go with it, it's goosedown, but I think it's hypoallergernic. I'm prone to allergies, and mine have been flaring up lately, even though it's winter. It's meant to be a super warm doona, and I guess I'll find out if that's true tonight! Despite the fact I have a single bed, I got a double bed doona and doona cover, so I'll be extra warm, and it'll fit properly/cover more of the bed. Single bed doonas have never fit properly, in my experience!

This is the teal blanket/runner, on top of my old doona.

I got a runner to go on top of the doona, as decoration, because it actually brings out the different blues, etc. in my doona cover. It's hard to tell with iPhone pictures, but it's a teal colour, and it's silky/shiny. It's also something extra to keep me warm!

'Skins' series 4.

New DVDs!

I went to JB Hi-Fi afterwards, because I wanted to see if they had the most recent series of 'Skins', series 4. (It's on SBS at the moment, but I watched it online, as it airs a lot earlier in Britain. I saw the series finale back in March!) They did, which is great, because now I don't have to record it on the Foxtel iQ anymore. I can just lie in bed with my laptop and watch it!

I also picked up a DVD for mum, it's called 'The Hunger', and it's a vampire film with David Bowie. An old one, because Mum's been looking for a copy for ages. I can't wait to see it!

I had a quick look to see if there were any singles from my favourite bands, but no luck. I've yet to find a single besides 'Mr. Brightside' in any CD store!

The life of a spoonie: where to put all those medications?!

Already full with meds!

A month or so ago, (I think a few days before my reunion) I went into Sportsgirl, and had a look at their cosmetic bags. I bought one, not for make up or nail polish, but for my medications! It holds most of them, but I may need a larger one!

Smiggle: matching, scented stationery fixes everything!

I tweeted about going to Smiggle before my haircut last week. I went partially because I love to look at what's in the store, but also because I had a rewards card to redeem. Well, here's what I bought:

6 fruit scented highlighters

3 fineliners with ink that doesn't
seep through: aqua, pink & black

I bought a pencil case, too. It's got two outside sections, one with mesh that closes with a zip, and the other fabric that also closes with a zip. The middle is opened with a zip, and it expands so it can hold my calculator on one side, (it's divided internally by a thin mesh/net zip section) and the other side can hold my scented pens, etc.

The internal compartments are ideal for holding my medications for school next year; it's a lot more practical than carry around lots of pill containers, and some people are odd about others needing to take medication. I have no idea why! It's subtle, anyway.

I use the external mesh zip section for my ruler and fineliners, and the external fabric zip section for my pacers, pens, liquid paper pens and eraser.

Fabric zip section.

Mesh zip section

And finally:

There's one thing I can't live without: my hair straightener! Since I got my hair cut short last year, it's no longer an option to tie it up in a bun when it's wet, and leave it there if I can't be bothered drying and straightening it. I can't even put it in a ponytail when it's dry; it's too short! So I'm addicted to my hair straightener. Even if I look awful, haven't slept and feel like a zombie, at least my hair isn't a wreck!

I just wish it wasn't so tiring. I have to wash it every second day, and use dry shampoo on my fringe in between. When it was longer, I could leave it until every third or fourth day, and in hospital, once it was washed, I could put it in a high bun, and leave it there until it next needed washing. That's why I'm going to start growing it again after school photos next year. (I want my hair to look it's best then, as our school photo goes up on a big screen at graduation.) I know this hairstyle suits me, but it will save me so much time and energy when I can just dry and straighten my fringe, and leave the rest of my hair up. I miss long hair!

My GHD hair straightener.

I hope you liked this edited post; it's not exactly a coherent theme, but there are a lot of pictures to break it up a little. Please let me know if you'd like to see more or less of something, or something new entirely! Alex. xoxo

Music

2010-08-15T14:47:00.003+10:00

Music
I've been listening to my iPod a lot lately, especially when I'm in too much pain to read/write/use my laptop, etc. I've been listening to Franz Ferdinand, and watching some music videos. Franz Ferdinand have really interesting and creative music videos, and I love watching Joy Division's music video for 'Love Will Tear Us Apart', followed by New Order's cover, recorded live in Glasgow. It's amazing to see the same three people age so suddenly, from 1980 to 2005 or something.

Joy Division. (L-R: Stephen Morris, Ian Curtis, Bernard Sumner, Peter Hook)

New Order. (L-R: Peter Hook, Stephen Morris, Bernard Sumner)

I've been watching Brandon Flowers' new music video, 'Crossfire', the new single from his upcoming solo album 'Flamingo.'

The album cover for 'Flamingo'

Brandon Flowers.

And, really, you can't go past Oasis. I love to watch interviews. There's one off the DVD from 'Stop The Clocks', a best of, and I chose German subtitles. I learned many swear words the first time I saw it. It is helpful for grammar, though. There's also 'Gold & Silver & Sunshine', which is basically the making of their final album 'Dig Out Your Soul'... I like it because it's not just the Gallagher brothers, but the whole band get interviewed. This was also on a bonus DVD that came with the CD.

The album cover for 'Dig Out Your Soul'

Oasis. (L-R: Andy Bell, Liam Gallagher, Gem Archer, Noel Gallagher)

Pain
I've been on the Lyrica for a while now, and it obviously isn't helping. It's actually causing headaches some days, plus the dizziness, disorientation, weakness and weird appetite. (I can't eat for 20hrs sometimes because I'm not hungry or I feel sick, then suddenly I'm starving, and eat a whole bowl of curry and rice and a few muesli bars!)

My new specialist is sending out a script for real painkillers on Monday. He also said I'm not to do my homework after tutoring, because 2.5-3hrs of study is too much for me at the moment. I'd be doing my homework now, except I've been awake since 7.20am and only got a maximum of 6hrs broken sleep, and my younger brother has a friend over. And I've got a headache that just won't go away. It's not as bad as the one I had for a whole week during that virus, but I think that studying will make it worse.

My back was really sore after tutoring yesterday, which went for about 3hrs. We covered more probability. Honestly, that topic goes on forever! I find probability quite hard, but it's not as bad as trigonometry. I was so exhausted last week that I forgot to send my homework in! I still have to put it in an envelope and address it. I'm so sick of distance education, it's a real pain having to do this much study and send off the work every week.

My favourite bands (listening to their music, or looking through pictures, going through their albums) always cheer me up.

The Killers. (L-R: Mark Stoermer, Ronnie
Vannucci, Dave Keuning, Brandon Flowers)

Franz Ferdinand. (L-R: Nicholas McCarthy,
Paul Thomson, Alex Kapranos, Bob Hardy)

Thanks for commenting on my 'Fibromyalgia' post, it was great getting all that feedback! I'd love to know: what have you been listening to? What helps you cope with pain and/or lack of sleep? And what cheers you up?

Alex. xoxo

Franz Ferdinand

2010-08-10T03:06:00.001+10:00

I love Franz Ferdinand. I've always really liked their music, right from their (self titled) debut album. But since I watched a MTV Live concert on Foxtel, I've fallen in love with them, their music and their lead singer/guitarist: Alex Kapranos.

Franz Ferdinand.

Alex Kapranos. Amazing.

Franz Ferdinand's music is so alive and full of energy, and watching that concert made me feel... Less dead? It doesn't really give me energy; nothing can, but it makes me the closest I've been to happy since I saw The Killers live in 2007. It was quite odd, really. I went with a friend, and after I was dropped home, I said to my mum: "It was brilliant, they were brilliant, but I feel weird... I'm in pain, and I'm exhausted, but I'm not feeling it. It's like it doesn't matter. And I actually stood for the whole time they played!" Mum: "That's probably happiness. And could you keep your voice down a little?" (It was about midnight and my younger brother was asleep. It was the first concert I'd attended, and my friend and I were just a little deaf by the end!)

Alex Kapranos singing '40 Ft.' at the MTV Live concert in Valencia.

The Killers.

I've decided I'll do whatever it takes to see Franz Ferdinand live: use all energy that I've saved, take whatever painkillers I can, along with my usual meds, plus Ondansetron if I need it, save my pension money for tickets, and pester my friends until I find someone who'll go with me so I can get the disabled access seating.

... Yep, all that for one concert. I don't have many good memories after the age of 13; so this will (hopefully) be another to add to mine. At the moment, they'd be school related/academic achievements, seeing The Killers live in 2007, my 2008 formal, and, I'm truly hoping, seeing Franz Ferdinand live. Soon.

They're currently working on their next album, but have vowed not to talk about it much, if at all; apparently Alex Kapranos felt that they over-publicised their last album, ('Tonight: Franz Ferdinand') so I'm just dying, waiting for a release date to be announced. Generally, from when a band begins their tour, it takes 6 months to a year for them to arrive in Australia and begin touring. Soooo... They'd better not play any festivals, or if they do, they'd better play some side shows at a suitable venue!

To finish this unusually happy and nearly spoonie-topic free post, more Franz Ferdinand pics!!

Don't you just LOVE the pink shirt?!

This avatar sums up my feelings about hot guys wearing pink.
(That's Brandon Flowers, lead singer of The Killers.)

I hope you enjoyed the post! Comment if you like, whether it's about Franz Ferdinand, The Killers, or just music in general! Thanks for reading. =)

Fibromyalgia

2010-08-08T09:00:00.000+10:00

Fibromyalgia.
Yep, I've long suspected it, but unti l saw my new specialist on Wednesday, it wasn't diagnosed. [Read: hundreds of doctors refuse to say if it's stress, ME/CFS or Fibromyalgia.] He's given me a script for Lyrica, so we're out of pocket for over $100 at least. If it doesn't work in a week, I can move on to stronger painkillers. Think Vicodin, OxyContin, etc. My new specialist, for once in my life, thinks that there is no way I can become an addict if I use it to treat pain! Besides, I don't have an addictive personality, and if I didn't require all these meds to survive, I would stop all of them. I'd rather be med free!

What this means for me:
Well, finally, a definitive diagnosis that sounds like a real illness. People say: "OH, so you're just tired and get to sleep all the time." when you say "CFS". When you say "Fibromyalgia", they say: "What is that? It sounds terrible!" Also, it means, for the first time in about 9-10 years, my pain will be treated. This gives me so much hope for my return to school; I sleep more when I'm pain-free, and I can stay at school longer when I'm pain free. I can also study for hours each night when I'm pain-free. If whatever painkiller this specialist gives me works, I will be so happy!

I've also been referred to another sleep specalist, although my new specialist reassures me that this person is an expert in the field. Hope so! I don't want to hear the words "sleep hygeine" again! I'm also being referred to someone about my dizziness, blacking out, etc. The aortal valve leakage isn't causing it to this extent, so I need a tilt table test. It really doesn't sound pleasant, but I do want answers!

Does anyone have any advice for how to deal with Fibro, what meds to try/request, and just general info, I don't know a lot about it! Thanks!! xoxo

I'm back!

2010-08-08T03:40:00.000+10:00

I suppose everyone wants to know how the reunion went:
It was an afternoon tea, and the food looked lovely, but I didn't feel like eating because I'd eaten already that day and I have braces. I didn't want to have food stuck in them the whole time, it's awful when that happens!

I was nervous beforehand, as I hadn't really seen anyone my age except a very close friend, and that was once in the past year. (We saw 'Twilight' together this year, had a sleepover last March, and saw a James Bond movie the year before.)

As soon as I found the people I knew best, I felt a lot more at ease. Everyone complemented me on my outfit, and everyone loved the necklace. One my friends, the closest I had at school, was suprised I wore nail polish (never have, even for a formal) but she thought the black nail polish looked cool, although a little "emo". =p This was clarified by me saying I still am obsessed with The Killers, Oasis and Franz Ferdinand!!

I mingled a bit, although it was difficult at times, as different groups of kids see each other at uni daily, and go to concerts and parties as well as having a ritual of a weekly coffee and a weekly breakfast. So I was a bit out of place, but everyone was so nice! I haven't received so many complements since I got my hair and makeup done professionally for my formal in 2008. (I also had my dress and shoes custom-made; I was too ill to shop, and they don't make size 3 or 4 formal shoes! I've grown out of nearly all kids' shoes, and can't fit into womens until I reach a size 6. It really makes shopping difficult, especially as I can no longer get away with Chucks. More and more formal occasions appear as I get older. If only my feet were a size 6!!)

Everyone had lots of tips on how to cope with maths, and the main theme was: "You will suprise yourself on your exam day." Other tips included: "Work with a group, or for you, your tutor, right up until before the exam, and make sure you revise everything you can!" and "Something you haven't understood all year may suddenly become apparent in the week before the exam; it happened to me!" also "Take detailed notes, but DO NOT rely on them too much." ... The best of all: "God, Alex, it's just MATHS!! It's so difficult, and you only need a pass mark to get into Accounting. It was so hard that I dropped it after two weeks!" This really cheered me up. When I told my friend, who did this maths in Year 11 (she's so smart!) about my SAC marks, she said that as long as I maintain a 'B' average, I should be absolutely fine.

Nearly everyone was so nice! There was this one girl who's always had a problem with me, IDK why! She was 'shooting daggers' at me, or perhaps a better description, 'giving me the evil eye' ... She is very ill, and I'm not sure it's just physical. She's been abusive/bullying at school, and I had the misfortune of being in the same ward as her last hospital admission. I had to speak to the head nurse, and ask that she be kept away from me as she would just fly into a rage and insult, bully, etc. God knows why. Perhaps the poor thing has a mental problem. It does not seem to be physical; she was in the ED section, and the psychiatrists came to see her. Normally it's just a psychologist who checks in on you, basically to see how you're coping with your hospitalisation and illness/illnesses. Who holds on to a grudge from 2004-2010?! I really think the poor girl has some serious problems. (I didn't mean to sound rude or bitchy, I just honestly think she needs help. When someone is diagnosed with any type of invisible illness, after years of detesting the invisibly ill, they usually feel empathy for those in their situation. This girl feels rage instead, which is so sad. It drains energy, as I well know!)

But the reunion was not all about this girl! Not at all!! I just ignored her immature behaviour, and concentrated on enjoying the afternoon tea.

I caught up with a friend who has a disorder that causes her bones to form incorrectly, so she just underwent an operation to break both of her femurs. So she understood my embarrassment at having to use a bath seat, or finding a task like brushing your hair exhausting and painful, as well as how difficult it is to lose your independence and have to rely on others. She was in a walking frame for months, then crutches, but now she is back to driving and living a normal, virtually pain-free life. I'm so happy for her. I do wish illnesses like M.E. and Fibromyalgia were as simple to fix!

It was also a relief to tell my closest friends about my parent's separation. They were so understanding, and kind.

I hope to keep in touch with them, but it seems unlikely as by the time I graduate high school in 2011, they will be in their 2nd year of uni. I won't be in their classes, and I was absent from school so frequently that I have been unable to form solid friendships; the sort that last for years. Perhaps I will form some of these friendships at uni.

I hope you liked my post, it is past 3am, but Blogger is finally working! Please let me know if there are any things you'd like to know about my reunion!

My new outfit!

2010-07-21T21:31:00.003+10:00

Outfit: so here are the pics!

This is the top I plan on wearing, black lace with either a black tank top underneath, or a black long sleeved t-shirt, depending on the weather, also with the pretty necklace. (Right.)

Another top, it's a dark purply colour, but you can't really tell with iPhone pics, it's also silk, I think, and is loose. Handy for days when I'm in pain and want to wear loose clothes. Hence the choice of two tops. Anyways, here it is. (Left.)

This is the blazer I've been talking about for a long time! "Tuxedo-inspired" and it's actually pretty comfortable for someone who is used to hoodies! (Right.)

I'll wear my darkish blue bootleg jeans with these Chucks. (Left.)

And this is the aforementioned bag that I'll be taking. (Right.)

Where did I shop?

Okay, the two tops, blazer and necklace are from Portmans, while the Chucks are from a Converse, etc. shoe store, at a factory outlet shopping centre. =)

My reunion:

I'm excited about it; of course it will be really, incredibly difficult seeing how everyone I knew so well has moved on to uni, etc. and I'm stuck at home. I can't even say I'm at that school this year! But I'm really getting sick of being in the house, with my family all the time. I can't wait to see my .. friends? Is that what they are now, or because they've moved on without me, are they acquaintances? But, anyways, it'll be great to get "dressed up" (for me!) and go out, even just for an afternoon tea. But, really, I'm wondering if the fact I'm so excited and anxious about my reunion is affecting my sleep. Oh well, it will all be over soon, until the 5 year reunion!

Feedback!

I've received comments on my Facebook and Twitter accounts about my new Chucks (both the pink glittery ones and the black sparkly ones) as well as my new bag, but no one's seen my new tops or blazer as yet, so, as always: I welcome feedback!

Take care. xoxo

Hospitals

2010-07-21T21:27:00.000+10:00

My hospital/specialist visit.
I saw my specialist on Monday, who was not of much help. I've been put on a new medication for my back spasms, but I can only take it at night. She won't help with the rest of my pain, my insomnia, or sleep pattern. Apparently it could take over a year for this sleep regime and sleep hygeine to begin to work. I really don't believe much, if anything of what doctors tell me. They've lied to me enough for me to lose faith in them completely.

I got given another dose of vitamin D supplement, it's a liquid oily thing, which tastes horrid. The last time I had it I nearly threw up in my specialist's office, she told me to stop being silly. That was last May/June. I'm meant to have it every winter now. I have many deficiencies and abnormalities, but this is the only one being taken care of!

My specialist gave me the prescriptions I needed, but dated one incorrectly, so the pharmacy couldn't fill it yesterday. Mum went to another local compounding pharmacy who have been filling my various prescriptions since I was 13, and they filled it. It just has to arrive. I'm going to try my new pain medication tonight, and see if it helps me sleep at all. I really hope it does!!!

After I saw my specialist I had to go to pathology to get my vitamin D, iron stores, TSH and more tested. I had to lie down with my legs elevated during the blood test and for 15-20mins after, as I get very faint, dizzy and light-headed with any procedure involving needles and the like.
Then the mean pathologist came in, and laughed.
So I said: "Yeah, it's hilarious, me being this sick, isn't it?" (very sarcastically)
He replies: "Oh, sorry, it's just funny seeing you upside down from this point of view."
Uh-huh. Whatever.
Last time he told me I had to watch my blood test, wasn't allowed to lie down, and it was "all in my head" that I get faint from blood tests, the sight of blood and needles, etc. Afterwards, as it was nearing 5pm, he sent me out into the corridor to wait for my father, even though I was faint, seeing stars and had ringing in my ears. I reported him!! We also reported him when I was 7. He scared the hell out of me then. He said that if I didn't drink 3L of water he'd have to stick me 10 times with a needle. (The hospital policy is a maximum of 3 attempts, unless the patient requests another nurse/pathologist.) I was already frightened of needles, but he made it 100x worse! I now know his name, so I can go to pathology and say: "Anyone at all, except ..."

That's about it for my health/doctor update! I don't expect comments, so don't worry!

Take care. xoxo

Maths tutoring

2010-07-18T20:49:00.001+10:00

Maths tutoring:

I was going to have maths tutoring on Saturday afternoon, but it had to be rearranged, so I chose today, at 2pm. We covered 'Functional Equations and Matrices', and it wasn't that bad. I was surprisingly awake and alert... Usually if I don't sleep well, even my medications can't work enough! This is the pouch of medication I take out with me, or keep with me during tutoring. (Right.)

I even managed to notice if my tutor made a mistake, or if I'd missed something, like a minus sign, or part of an equation. So it was a good session; challenging in parts, but I understood it all. =)

I have a lot of maths things: two pencil cases, one with a stapler, scissors, highlighters, ruler, spare pens/pencils, my memory sticks, spare lead, and coloured tabs. The other holds the pens I use each tutoring session, my calculator, (TI-89 Titanium) Smiggle scented pens/thin felt-tip pens. I also have a textbook, coursebook, (which contains the homework and all the weekly work) A4 notebook for study/homework (I will use looseleaf soon, it's annoying having to tear out the homework pages) and two smaller notebooks, one already filled with notes and examples, the other we just started using today for the same purpose. There's a binder folder which I use to store SACs, and anything else from Distance Education. I have a blue display folder, too, for tutoring notes, cheatsheets, and working out/scribble. I keep my organiser with me, so I can remember which week I'm in, upcoming SACs, and organise tutoring session. Obviously my wallet. That's a pic of all the stuff I have to cart back and forth each weekend. (Above, left.)

My younger brother woke me at 9.30am, and it was noisy so regularly, plus the fact that my deep sleep was disrupted meant that I couldn't get back to sleep. I stayed in bed anyway, I didn't want to cause more pain; sitting and studying means I need an hour lying down. That's why I'm writing this blog post from my bed! I went to bed at 10.55pm, but it was too noisy (as my younger brother still hadn't gone to bed) for me to sleep. It was finally quiet at around 11.20pm, and I was asleep by midnight. I woke at 4.50am, fell asleep by 6am, woke at 8.10am, and fell asleep quickly. Until I was woken. I haven't had a nap!

I worked solidly from 2pm - 5pm (tutoring) then studied/worked on homework until about 7pm. I've finished the whole week's homework, and next week I have an analysis assignment. I'll ask my teacher what topics to revise, I figure it's on something from Unit 4, but it could be something awful like trigonometry... That always seems to be on tests and exams!!

This is my homework. (Left.) Usually it's a lot more than one page! I completed 4 questions, but couldn't get my hands to stop shaking enough so I could take a clear picture. But you get the idea, if you look closely you can see the matrices, and the different colours of pen for question numbers, then questions, and pencil for the working out! It's sort of messy for me, but I'm not used to having to do matrices. It's lining up the square brackets that gets me! Plus I have a tendency to write sloping down the page. It's funny.

I need visit Officeworks, and I may go tomorrow; I have a specialist's appointment near an Officeworks, and Mum needs to return something anyway. I'm out of the blue sticky coloured tabs, and am running low on the other colours. Those are the tabs I have right now. I also need get post-it notes, they're very useful as reminders to stick up, and I love looking at the stationery! I feel as though if everything is colour-coded and organised, I'll get a great mark!!

I hope everyone likes the pictures! I'll leave you with another. You know how I bought all those Franz Ferdinand CDs. (Last post) http://thecabbagestalk.blogspot.com/2010/07/shopping-and-results.html) Anyway, I'd liked Franz Ferdinand since the start, really, (2004) but I've got into them a lot more since I recorded a performance and watched it over and over. It was on MTV Classic, and it's from February 2009; Franz Ferdinand playing live in Valencia. It's amazing! All their songs sound brilliant live, and they sounded great before! This is a "screenshot" (I took a pic with my iPhone) of Alex Kapranos singing '40 Ft'. Enjoy, I know I did! =D (Right.)

I love comments/feedback. Ticking a 'happy'/'sad', etc. box would be great! People are reading/visiting, but IDK why they won't comment.

Shopping and results!

2010-07-16T18:50:00.002+10:00

Shopping:
I went shopping on Monday, but have been recovering until now, (Friday) otherwise I would have posted earlier! I found a bag, some shoes, and got my blazer altered at the tailor's. The bag is black, and the main section has a zip compartment which is ideal for my medications, and in the main section I'll carry my usual things: wallet, water bottle, pension card/library card, (they're the closest thing to an ID I own!) keys, etc. On the front there's another zip compartment, but much larger, and I'll use that for my iPod, iPhone, and anything else I need frequent or quick access to. Perhaps Ondansetron should be kept there, too! On the back of the bag there's a small zip section which is ideal for papaw ointment, lip gloss and a small mirror. Here's a picture, what do you think of the bag?

The shoes I got were from the Converse outlet, and one pair is black and sparkly, fastened at the side by velcro/press studs and sort of look like slouch boots. They don't have laces, so they're a bit more formal than normal Chucks. Do you like my shoes? I won't be wearing the tops turned down at my reunion, but they're still cool!

The second pair I got are just normal low-tops, except they're pink and glittery, with identical laces. I don't normally like pink, but these were so bright and shiny (I sound like Gollum!) that I couldn't resist. Oh, and the laces are sort of elastic-y. Are they too pink and shiny, or do you like them? Let me know, leave a comment!

I also bought Franz Ferdinand CDs: 'Franz Ferdinand', 'You Could Have It So Much Better', 'Tonight: Franz Ferdinand' and 'Blood: Franz Ferdinand'. The only one I didn't own a digital copy of (from iTunes) was 'Blood: Franz Ferdinand'. I've since listened to it, and I like it, but not as much as the other albums. I don't always like remixes. But since I've really got into Franz Ferdinand, I had to own a copy of all their albums, and actual CDs at that. Same with Oasis and The Killers. I can't wait for Franz Ferdinand's next album, and I really hope they tour here, at a disabled-friendly venue. (ie. Not a festival, an arena with seating, and music that a friend likes so I can access the disabled seating.) With The Killers on hiatus, I needed a band to fill the musical void in my heart! Here are the CDs I bought; sorry the picture is sideways. I take all pics with my iPhone now. Do you like Franz Ferdinand, too? What sort of music are you into? What music would you recommend for me?

I just needed the sleeves on my blazer shortened as they were too long, but otherwise it fits me really well. It will be ready to pick up on Tuesday. Hopefully it turns out fine; I've never really owned a "good" jacket or had to have anything altered besides jeans. I'll post pics of my outfit as soon as I have it all together. I have a really nice necklace to wear, as well. I welcome opinions!

Maths results!

My mum rang my teacher the other day because I was having a mini-meltdown over my results, which I STILL hadn't received. I got an A on my calculus assignment (that really long one that took a fortnight) and a B on my test/assignment which was on calculus and trigonometry, plus a few other things. When I got my results in the mail, I got a fright, because of the way things are classified, my marks fall as a 'High' (B+ or B) and a 'Medium' (C+ or C.) My teacher worked out the percentages, though, and I got a low A, which falls into the 'High' category with the sorting, and for the second assignment I got a high B, which falls into the 'Medium' category with the sorting. So far this year on my assignments I've received: A+, A, B. My next assignment is in the last week of June, and I think it's another long one, but I only get a week to complete it. I really hope I do alright.

I have to maintain a high average for my classwork, because I usually do badly on my exams. I panic, and then have a mind blank. This only started after I missed a year of school and was house-bound that year. My doctors think I developed a lot of new fears that year. When I got back to school I was terrified of speaking in class, or even talking to people. I'd also developed mild agoraphobia. I hated leaving the house, and would have a panic attack every morning before school. I still panic before any kind of public speaking, whether it's debating, a speech in front of the school, or just my English class. And I'm really panicky during it. I thought debating would help me face my new fear of public speaking, but it just meant I got to be terrified on a regular basis. So I'm still as scared as ever when it comes to public speaking, but if I feel comfortable in a class, I'll contribute. I'm always told I need to contribute more to class. (Not in German; there was nowhere to hide in a class of four people, including me!)

Another stressor/fear:
I'm stressed that I'll be the same after this year at home, studying by distance: scared of school, scared to speak up, scared of leaving my room. I do go out, but that's different to giving a speech to a class. I wish I could be assessed differently for oral tasks, because they actually mark you on how well you present. So I'm at a disadvantage before I even start the assignment! I just hope that there aren't too many oral presentations, and if there are, that it's group work. Then I don't have to do all the talking. The worst thing is when I get so shaky and start blacking out that I'm not sure if I'll be able to speak... But I always end up talking. Luckily! I really don't think it's fair to assess people on how they present an oral task. A fear of public speaking is very disabling, and if you already have a disability, it's even worse.

Sleep...
I slept well Monday night this week, but I was woken the next night, so since then I've had very broken sleep. Take last night as an example: I went to bed at about 10.50pm, but woke at 1am, 5am, 6am, 7am, 8am, 9am, 10.30am and 11am. I got up at 11.30am, and haven't been back to bed since. It's a pity, because I really need my sleep to recover from all the activity on Monday. I walked so much that day, it was a huge shopping centre! I'm hoping my sleep will right itself again soon, because I will really need rest before my reunion. I hope I can have a good time, because after that, it will be the weekend, then my assignment week. Yay.

I love reading your comments, but I've been missing them lately! Where is everyone?!

Brain fog and study don't mix.

2010-07-11T12:55:00.000+10:00

Study:
Yesterday afternoon I had maths tutoring from 2.15pm - 5pm. And it went well; my tutor understood that sometimes I'd zone out, or need things revised because of the pain I was in, but overall I grasped all the concepts from Week 3. (Integration.) It was the homework that was difficult. My calculator (a TI-89 Titanium) wouldn't co-operate for a graphing question that HAD to be done on the calculator, so I skipped that question entirely after fiddling with the 'window' settings for 20 minutes. I think by the time I'd started my homework, I was in so much pain (back pain as well as the pain from my braces) and so brain dead that I really wasn't in the best condition to be doing calculus. I had to read the questions 3 times before I understood them, and I'd confuse a) with c) and have to start all over again! I finally finished at around 7.30pm, and the homework is sitting in an envelope, addressed and ready to be mailed to my teacher tomorrow. Yes, I could try again another day, but I work best when the mathematical concepts are fresh in my mind - even if my mind is full of 'fog'. Besides, I hate making mistakes, or realising that I've made them. I always think I should have done better, even if I get an A+. But because it's maths, I'm just going to settle for an end-of-year pass mark. I can't fail, or else I won't be able to get into Accounting. (I'm desperate to study Arts, then Law, but if I'm still really sick... A safe government job is what I should go for.) So my week is pretty much free until I have tutoring again next Saturday!

Sleep/insomnia.
I guess I thought I would sleep after studying for so long, being in so much pain all day, for days (which is exhausting) and washing, drying and straightening my hair (an exhausting task, which must be done every second day.) But I didn't sleep well. My younger brother was so hyper, he was banging on the bedroom walls and yelling until late at night (11.40pm) so even if I'd been able to go to bed at 10.30pm, I would've just become really stressed and felt sicker. I woke at 1am and 3.40am, and then slept fitfully until 6am. I have a really sore throat today, and have had one since I woke at 3.40am, so I got up at 6.30am to get ice cream! And then I got chills, then I felt like I was running a fever.

I'm just really not feeling well, and I think that the lack of sleep is making me sick. I've been up since 6.30am, pretty much, just lying down in between. I'm really nauseous, but can't take Ondansetron because it's being rationed for days when I'm doing something. (Like yesterday - study.) I did manage to change my bed linen today, but I've pretty much used up all my energy. And it's not even 1pm yet! I've spent a lot of time on my iPhone; on Tumblr, Twitter, and Facebook. That's basically my life: the internet and study. I stayed out of bed from 11am yesterday, and went to bed at 11pm, but I still slept terribly. I really think this "sleep hygeine" is useless for me. I'm going to nap if I can soon, because I feel really sick, and there's just not enough that I can do to keep myself occupied!

Comment if you have any suggestions for ways to use my time (NOT STUDY!!) or just want to say 'hi' ... I'm missing the comments! Thanks for reading!

Braces

2010-07-10T10:53:00.000+10:00

Braces:
I got my braces on last week, on Tuesday afternoon. And it didn't hurt... For a few hours. Then it was absolutely agonising. And it still is. The orthodontist and assistants are all really nice, and they explain what they're going to do before they do it, and they warn me if something might be painful! This is all new for me, my last orthodontist thought braces were a "pain-free" procedure, but it would be hard to eat steak for the first week. She obviously never had braces, or met people with different pain thresholds!

I'm on Panadeine Forte for the pain, which, as bloody always, does almost nothing. On the upside, it means I can open my mouth enough to eat rice, but apart from coconut rice, I'm basically living off jelly, ice cream, and anything soft that doesn't require chewing. I take Mersyndol before bed and when I wake at 3am, because it's supposed to help you sleep. It didn't when I last had braces, and it isn't this time! Still, it means the Panadeine Forte will last longer, because I don't know how long I'll be in pain.

The pain is keeping me awake at night. I've been waking at 3am every single night since I got these braces, and today, I haven't got back to sleep yet. And I have to get up at 12.45pm for maths tutoring. I'm really not looking forward to it; it's hard for me to concentrate at the best of times, but when I'm in overwhelming pain, calculus is infinitely more difficult. I haven't been able to revise at all. The first week of the holidays I was too exhausted and busy, and this week I've been in too much pain and too sleep deprived. I really hope I can remember the basics of antidifferentiation and integration, I really don't want to waste my tutor's time revising. I feel guilty that I couldn't revise, and that I'm taking up my tutor's weekends every week...

I'm considering going to the hospital if the pain keeps up much longer. It isn't often that pain brings me to tears, but this is. On a daily basis. Also, decent pain relief (like morphine) helps you sleep, apparently. It didn't when I was 9, but, who knows? I just want to be pain free for one entire day!!!

Sleep routine:
I'm still going to bed each night between 10.30pm and 11.30pm, and I am generally asleep by midnight. I always wake at 3am, regardless of what time I got up the previous day, whether I napped, or anything else that's sleep-hygeine related. This week, it's been the pain waking me, but before that, it was a new pattern. I just hope it changes again soon. My younger brother goes back to school on Monday, so I'll be able to go to bed at 10.30pm every night and get to sleep sooner, because it will be quiet, finally. Mum has promised. I figure if I stick to a night time routine, the day time sleep will lessen - my need for it, that is, so eventually I can get up earlier. Some days I'm in bed until 4pm simply because I can't get up. I really need more sleep, at night, in order to do well this year, and to get back to school and Orientation. I'm trying my hardest, but my body is trying it's hardest to make sure I don't sleep! M.E. is the most confusing, frustrating and misunderstood illness!!

Reunion:
I have a one-year reunion for my high school coming up in about a fortnight. I've pretty much got my outfit, but I need a bag, as mentioned in a previous post, and I might get a new pair of Chucks. One day I'll be able to fit into adult's shoes. I'd wear flats, but I can only fit into one kind, that is sold at one store in one season, and last time I went, they had a size 2 (I've grown out of mine) and a size 6. Not helpful. But at least I'm relatively cheap to buy for when it comes to clothing; I fit kid's shoes a lot of the time, especially if they're runners.

I'm hoping the pain will subside enough for me to go and look for a bag and maybe get some Chucks. I know my size, and the colours I like, so it's not too energy-consuming to buy them. I'm excited about the reunion; I haven't really seen anyone since my November exams last year, and then it was only a few girls. If I'm still in pain by the reunion, which I shouldn't be, I'll eat some rice beforehand, because I doubt they'll be serving jelly, lol!!

Unfortunately, I'm seeing my specialist earlier that week, so I'll be tired from the constant battle for meds or a treatment that isn't SSRIs. I just refuse SSRIs and Melatonin; they don't work, they never have, and they won't now!

Thanks for reading, and I love reading your comments and seeing your feedback. LMK if the last post was too long, okay?

Shopping & Twilight

2010-07-05T08:26:00.000+10:00

Shopping
So, yesterday I went shopping. I found a blazer on Friday in Portmans after I'd had my hair cut, but they only had a size six. And I'm not a size six, so they put a size ten and twelve on hold at another store in a nearby shopping centre. I managed to go yesterday, as they wouldn't hold it any longer, and the size ten fits (almost) perfectly! I just have to get the sleeves altered; they are too long. I never fit anything properly, and I can never buy shoes. (Unless they're runners, generally Chucks, or Havaianas.) Apparently girls with size 3 feet don't exist. Anyway, Mum talked me into trying on some nice tops (that weren't t-shirts for a change) while I was there, and I found two that I really loved, as well as a necklace to go with the outfit!

I just need to get a bag, and then I've actually got an outfit I can wear to more formal occasions. Until now, my whole wardrobe consisted of jeans, t-shirts, hoodies and tracksuit pants. (For when I'm too sick/in too much pain to put on and/or wear jeans, or need to exercise.) One top is a black lace one, and I'm going to wear a black camisole/tank top under it, obviously. The other top is sort of a dark purple, and it's really pretty. Yes, I'm great at describing things, aren't I?! Um, the blazer is sort of "tuxedo-inspired" (apparently) and it's black.

Twilight
For those of you who are my friends on Facebook or who follow me on Twitter, you may know that I'd been planning an outing with an old friend (our parents met when we were babies!) to see the movie 'Twilight: Eclipse'. I'm not a fan of romances, for instance, I love Shakespeare, but really strongly disliked 'Romeo & Juliet', which was sadly the first Shakespearean play we did in English at school. That was back in Year 9. (In Year 10 we studied 'Macbeth', and in Year 11 we studied 'Othello'. I loved both. Some people thought that was odd.)

Anyway, Mum rented the first two 'Twilight' movies for me last week, so I could catch up, as I wasn't well enough to get to a bookstore. The first one was alright, the second was worse, and the third, which I saw with my friend, was probably my favourite. There were some funny lines, but the last film we saw together was a James Bond movie at Gold Class, with Starlight. That was my choice! So that might give you a clue as to my interests when it comes to movies. I also don't like people messing with the classics. Don't mess with 'Dracula', okay, people?! I don't like my vampires sparkly and feeding off animals! Speaking of 'Dracula', I love the book, and the film. (I don't know which particular version I have, I should check sometime.)

I had a great time, and I was even well enough to wear lip gloss. (The last time I wore make-up was at my Year 11 formal!) Well, I actually wanted to look nice. I didn't want to look like a vampire, being pale and all, but considering that Edward seems to wear lipstick, I probably ended up looking more like a vampire than ever! I really hope that there are some good movies coming out over the next few months, I really want to catch up with this friend again. She even likes 'Doctor Who' now!! Awesome. (I hadn't seen her since March last year, so people can change a lot in that amount of time!)

It was a fundraiser for a charity/support group for adolescents with chronic illnesses - I've been a member since I was in Year 8 (age 14) but I haven't been able to go to any of the socials or camps because they're not designed for spoonies. Things like ropes courses, swimming, rock climbing, indoor sports centres (wheelchair friendly) have been the reasons I've missed out. It's been so long, in fact, that we've now got a new co-ordinator (again) and I only recognised two of the people there. They still remembered me! I had a brilliant time, and I love going out. There was a bookstore next to the movie theatre, and I got super excited, because they had the definitive edition of 'The Diary Of Anne Frank'. Which I mistook for the critical edition. Can I just say that it sucks, because I still have to order it in from the US. Hopefully it's not so expensive anymore, otherwise I'll have to wait until Christmas. *extremelysadface*

Sleep (or lack thereof)
My sleep pattern has gone crazy. I go to bed between 10.30pm and 11.40pm each night, am generally asleep by midnight at the latest, and wake at 2.30am or 3am every night without fail. I stay awake for hours, usually falling asleep again around 7am. But it's now past 8am, and I have not slept since 3am. So I think I might try to sleep until 3pm. I don't care what it supposedly does to one's sleep pattern, I just can't keep using Ondansetron because my crazy, stupid body won't let me sleep! Right now I'm really craving a bagel. We get our milk home-delivered, and you can order other things like eggs, bread, and bagels. I have recently discovered sesame bagels, and love them! They're perfect for when I feel sick, but have to eat. But back to the sleep. Because this new sleep pattern only started about 10 days ago, I figure that if I continue to go to bed at around 11pm nightly, and avoid naps, it should right itself, so that I can start to get up earlier each day. (No earlier than 11am. That's just a waste of rest time, and the only advantage of distance education!) I'm still not sleepy. I have no idea what is wrong with my body clock, because I am really starting to feel sick now.

Braces. Again.
So, on Tuesday afternoon I'm having my braces put on. Yay! NOT. I am really not looking forward to the pain, and I couldn't get an appointment with my G.P. until Wednesday evening, so I'm going to have to use lots of OTC painkillers to manage. (Last time I got both top and bottom sets of braces on at once, and I was on a liquid diet for a month. I couldn't chew! I'd tear my sandwiches into pieces, then swallow them whole. I was 12, and it was much less painful having four teeth removed under general anesthetic than it was to have braces.) I'd rather have the painkillers I got when I had those teeth pulled than Panadeine Forte! IDK what they put in my drip, but it was effective. I couldn't feel my lip for two days! (It was quite funny.) I'm hoping because I am only getting braces on the top set of teeth, and on a much smaller section, that the pain will be a lot less, but I really don't know. I have an incredibly low pain threshold. I just hope I can still get things done this week. Like get a bag to go with that outfit, or see my grandmother, or even study, because I have tutoring this Saturday. And it's the last week of the holidays. *sigh*

Thanks for reading, comment if you want, I'm sure you know by now that I love comments!

A lovely surprise!

2010-06-29T21:14:00.000+10:00

I've been nominated for a "One Lovely Blog Award" by Dominique... Her blog is here: http://www.4wallsandaview.com/ Thanks heaps, I really appreciate it!

In order to receive this award (I found this information from Dominique's blog) I have to:

Accept the award
Pass the award on to 15 other blogs that you've newly discovered (if possible)
Remember to contact the other bloggers to let them know they've been chosen for this award.

I'm not sure how many blogs I follow, but these are the ones I am nominating for the award:

It's Time To Get Over How Fragile You Are - by Annie. http://www.fragileannie.com/ She blogs practically every day, and I find each post interesting, inspiring, or just something I can really relate to.
Lemon Butter - by Natalie. http://www.lemon-butter.blogspot.com/ Natalie blogs a lot more frequently than I do, as well, and it's a change from the normal spoonie blogs I read. It's a way for me to find out what's in fashion, but it gives me hope that I might recover; Natalie has/had severe M.E., too.
ME/CFS and XMRV - by Emma-Kate. http://www.cfsandxmrv.blogspot.com/ Emma-Kate explains the latest news, findings and reports about ME/CFS and the retrovirus, XMRV. It's a great way to keep up with what's been happening, and the blog is brilliantly written and impeccably referenced.
My Life as I "StandUP2ME" - http://www.standup2me.blogspot.com/ This blog is about the latest happenings with ME/CFS, the WPI and more.
4Walls And A View - http://www.4wallsandaview.com/ by Dominique, the lovely person who nominated me for this award. I've only recently started to have a look at her blog, and I think it is beautifully written, and I can relate to a lot of the M.E. related posts. (As I can with most spoonie blogs!)
How Can I Explain It To You? The Life Of A Grad Student With Lupus. - http://www.gradstudentwithlupus.wordpress.com/ I can really relate to a lot of the posts, and I am hoping that it will give me an idea of what uni will be like for someone with a chronic illness. It's a really good feeling for me when I read something and think "I know what that feels like" because it means I'm not alone, and that's what a lot of these blogs do for me. As well as providing inspiration, etc.

They are all genuinely nice and lovely people. As a happy coincidence, all of these bloggers have Twitter, too! So I can see when they've updated their blogs just by checking their tweets, although Emma-Kate hasn't been on Twitter in quite a while.

I try to read these blogs when I can, but I am often kept to reading short blog entries, like those on Annie's blog. I used to spend hours on Emma-Kate's blog, and the blog 'My Life As I "StandUP2ME"' but lately I've been too fatigued and brain dead! I wish there were 15 blogs I could find to recommend, but I'm exhausted already! Now to notify the bloggers!!

If anyone has any spoonie blogs (eg. M.E. or Fibromyalgia blogs, particularly those of teens/young adults) that they'd recommend, please let me know. But I'm always happy to check out any blogs, when I have the ability!

Holidays!

2010-06-29T14:47:00.001+10:00

Holidays!
Yep, it's finally the holidays!! Friday was my last day of the school term, and I was up until midnight finishing my homework on Thursday, after having tutoring at 6.30pm. Tutoring was alright, but calculus is just getting more and more difficult. I hope I'll be able to study next week, so I don't forget everything, but above all, I hope I can do well on my exams and remaining SACs. We covered Integration that week. I didn't like it much! I am seeing a friend on Saturday, we're going to see Twilight. I should really rent the other movies so I'm not totally lost! I can't wait to get out of the house, but my main concern is that I'll be so exhausted I won't be able to enjoy it. I've been doing too much these past few weeks. I also need to find a blazer. I saw some in a magazine that were by Living Doll, and I'm hoping there's a place nearby that stocks the brand, as well as blazers that aren't necessarily floral. I just want something plain!

The past week:
The past week has been pretty busy; on Monday I found out that I definitely need braces. Again. I saw the orthodontist (not the one who did my last set of braces) and I need them on my top set of teeth. I'm having them done on the 6th of July. It would be awful if my teeth moved again! So I need to get Panadeine Forte from my doctor for that, because it's always really painful getting braces put on or having the wires changed. But this orthodontist is nice, so that's one good thing. I had to have an x-ray that same day, and then I had an appointment in the evening.
On Wednesday I had my personal training session, and went to Officeworks afterwards to pick up some things for a school project. (For my younger brother.) I also got another notebook, identical to the one I currently use as a diary because I figure I'll go through it in the next few months, and I really like the design.
Thursday I didn't sleep very well, and was up from about 10am, watching the results of the leadership spill, and the speeches from ex PM Kevin Rudd, the new PM Julia Gillard, and deputy PM Wayne Swan. I ended up going back to bed at about 1.30pm for a nap before tutoring. (Previously mentioned.)
Friday I had another appointment, and I only got 2hrs' sleep. I also changed my bed linen (a huge task for me, one I try to do every week) washed my hair and put on a wash. I spent basically all of the weekend in bed; I feel completely wiped out, and most days it takes me an hour to sit up in bed. It's like my limbs are lead.

This week:
Today I had an appointment, as I did yesterday evening, but I don't have to do anything on Wednesday and Thursday except rest before I go out on Saturday. On Friday I'm having my hair cut, which is good, because it'll save me energy; I won't have to wash it that day! I've been going to bed between 11pm and 11.45pm for the past week or so, and it worked quite well some nights, except that I was waking every hour, but last night I went to bed at 11.45, gave up on sleep at 2am, watched tv, tried sleeping repeatedly, but was awake until about 6.30am. And I got up at 11am today, so I am feeling really sick, disoriented, dizzy and nauseous. If someone could fix my sleep, I think all my other symptoms would ease incredibly! Does anyone else feel that if they slept, their symptoms would be relieved?

The new PM...
I think it's a good thing that the Labor party has a new leader; after several disasters, for which Kevin Rudd took most, if not all of the blame, they needed a change of image. I also think that Julia Gillard would be able to defeat Tony Abbot more easily than Kevin Rudd, but it's still very early to be making predictions. But I do think that by changing leaders they have distanced themselves somewhat from the various disasters that have happened, and are also promising change. I am interested to see what sort of role Kevin Rudd will take on in the new Government, and am also wondering when he will change his Twitter account. It still has the title "PM" in it. Speaking of Twitter, there are some really funny (fake) politician's accounts out there. I can't wait for the election, but I really hope that it doesn't come too close to my exams!

That's it...
I guess that's all I can really think of at the moment. I haven't got a lot to say, but if I were feeling better, I would write more about the change of leadership. I'm still writing in my diary nearly every day, and I spend a lot of time on my iPhone. I love the "Fruit Ninja" app. It's heaps of fun, but not so good if you're trying to relax before bed! Then I just read news sites. I might try to get up at 11am or midday each day, because then I might sleep at night. I'll really need my sleep before I go to see the film, because it takes about an hour to get there, (I think, when you include picking my friend up) so I'll have to get up at about 11am. And I want to be able to enjoy myself, and eat junk food! =p

Keep the comments coming, I love to hear from any and all readers! Sorry if this was a boring post!!

Stress, and lots of it!

2010-06-20T19:12:00.000+10:00

Holidays:
The school holidays start at the end of this week, finally! I haven't had a break since February or something; I spent all of the term 1 holidays studying, catching up on the 7 weeks of work I had missed. I'm seeing a friend and going to a movie on the 3rd of July, and there's the Class of 2009 reunion towards the end of the month, so I need to go shopping on the holidays and find a blazer, because, at 19, I don't think I'll fit in wearing a hoodie! But I'll still wear my jeans, lol. I really need a rest, though. I'm completely exhausted.

I think I should move my specialist appointment to a closer date, because the 19th of July is too far away. We need to work out a compromise on my sleep, and therefore my pain. I find it hard to believe that in the 21st century doctors can only treat nausea with Ondansetron, provided you use it very sparingly. I need my other symptoms treated, and not with Melatonin! It doesn't work, no matter how high or low the dose is!!

Maths tutoring:
My tutor rang about half an hour before tutoring was due to start, to say that she couldn't make it, as something really urgent had suddenly come up. (She works as a dentist now, and has been tutoring me since I was 13. I'm lucky she makes the time each week to tutor me!) I didn't think it would be a problem until after I spent 3.5hrs revising antidifferentiation, and realised that I was having a lot more trouble with this Unit than I had originally thought. I tried to start the work for Week 2, but it's just too hard for me to understand what is written in my coursebook; I need someone to go through the examples, and explain how it works and why I need to do each step.

I realised about an hour ago that I'll be so busy this week that I won't be able to start my homework until Thursday evening (my tutor is coming over at about 6.30pm) and it's due Friday. That means tutoring will finish at around 9pm, and then I need to study for at least 2.5hrs to do my homework. So I won't be finished until about 11.30pm or midnight.

Unfortunately, because I study via distance education, it takes at least 24 hours for my homework to arrive. I was sent an email last month saying that if you don't have all your homework in before the holidays, the work may not be marked. But I don't think my homework arriving on Monday as opposed to the previous Friday will make a lot of difference, particularly if I let my teacher know. I can't do it on Monday, Tuesday or Wednesday, either; I have appointments on Monday (two of them) and a personal training session on Wednesday, so I'll obviously have to rest and try to sleep on Tuesday. I also have an appointment on Friday, so I can't do the rest of my homework then, unless I cut out a lot of sleep, take Ondansetron and a lot of painkillers. Not a pleasant option. And I'm feeling really exhausted and sick every day. Today was the one day I felt able to study!

Stress and anxiety...
Does anyone have any tips on how to cope?

Year 12 is the most stressful and anxiety-inducing experience I've ever encountered, particularly given my M.E.! There are just so many things to worry about, and my specialist is telling me one visit to drop out, and the next to get a part time job soon! I honestly think doctors talk nonsense when they're at a loss for what to say or do.

Also, if anyone else has sleep problems similar to mine, have you found any medications that helped or worked?

I guess that's it for now, I'll probably have more to write later in the week. Thanks so much for the comments, it's great to know that other people are reading this! Any and all positive comments/feedback are most welcome. =D

Maths and other things

2010-06-15T10:18:00.000+10:00

Another outing!
I got to go to IKEA on Saturday, as I really needed a new wardrobe and bedside table. I didn't go until 4pm, but I still needed Ondansetron; I've been getting shocking nausea, headaches, dizziness and disorientation/confusion from the LDN. (Which I have had to stop taking; I have been off it for two or three days.) I went to the cafe first, and I really love IKEA's cafe. Particularly the free refills on soft drinks! But for the past 4 days I've eaten one bowl of low fat pumpkin soup (nearly threw it up, that was a mistake) and a few spoons of coconut rice if I get starving. I wonder if I've lost weight; I know I lost a kilo last week. Anyway, I was all *sadface* because I couldn't even finish the kids' bowl of chips I'd got. But I managed a glass of Pepsi. =D It's a good thing I don't lose weight as easily as I used to, otherwise I'd be really thin by now!

Mum had already found out what aisle the wardrobe and bedside table were in, so we went to get them, then organised delivery for the next day, preferably after midday. The furniture arrived at 11am, so I got up at 10.15am, (which is when Mum warned me it would be dropped off soon) watched a bit of tv, and was going to go back to bed, but had to help with the grocery shopping, and get some take-away coconut rice. (If you're ever feeling nauseous, this seems to be quite tolerable in small amounts.) Then I went back to bed, to catch up on sleep. I'd only got 2hrs' broken sleep during the night. O.o

We're going to organise for the furniture to be assembled (hopefully) sometime this week, and then I'll post pics on Tumblr or Twitter of the new furniture. One of the wardrobe doors has a mirror on it, which is brilliant, 'cause I've only ever had one of those little mirrors designed to sit on a shelf so you can see your face. Not useful for looking at a whole outfit!

Maths...
I started Unit 4 on Sunday, having finished my calculus assignment last week, and my 70-minute SAC in the same week, as well. I'm really not sure about how I'll go, and I know for sure I got one of the short-answer questions really wrong. I guessed. Sometimes guessing pays off, sometimes it doesn't; but you had to attempt every question to show a satisfactory understanding of the topics in that SAC. Ew. Week 1 is antidifferentiation, which is pretty hard. There are also way too many rules, plus it's complicated to set out and remember what I am supposed to be writing!

I had maths tutoring on Monday, and we covered all of Week 1, then after about 2.5hrs of tutoring, I studied for another 3.5hrs, and I managed to complete the week's homework and a 20-minute practice exam. I plan to revise antidifferentiation as soon as I can sleep enough and the house is quiet. I hope I get a decent score for maths this year, I know that it wasn't this difficult in Year 11!!

I might ask some of my friends who graduated last year to study with me/share their notes before my exams. That is one slight advantage to being left behind; you can get help from others who have very recently suffered through the same subjects as you!

I hope my tutor isn't disappointed in me when I get my marks back. She's really nice, I just feel like I could do so much better if I could sleep each night, or 3 nights per week. I feel like I'm letting everyone down; I used to be able to survive on 3hrs' sleep every night when I was 13, now I can't survive on 4 or 5hrs' broken sleep. I think if I were to get 5hrs' sleep without waking, between 11pm and 4am, I would be okay. But some nights I am awake until 4am, or even 8am. And I don't sleep deeply after a whole night awake anymore.

Sleep.
I slept much better on Saturday night, only waking two or three times, and I got to sleep at around 1am, woke at 2am and 6.30am, and got up at 10.15am. Obviously I didn't get 8hrs' sleep, as I was awake from 6.30 onwards, dozing occasionally.
Sunday night I slept about the same, except I woke at 2.30am, and couldn't sleep between 7.30am and 11am as my younger brother had a friend over for a sleepover the night before, and they were quite loud. But, thankfully, they were silent when they got up at 4am or something to watch the World Cup. I had maths tutoring at midday, so I had to get up at 11am, and I took Ondansetron at 10.40am, so I would be able to get ready and eat a little without throwing up.
I slept okay last night, as well; I got to sleep at around 1.30am, woke once or twice (I don't remember when, so I musn't have been awake long) and have been awake since 6.50am. (It's nearly 10.20am.)

I've dimmed my bedside alarm clock so that it doesn't display the time; all my doctors have made me "clock watch" so I can say when I wake/sleep, etc. but that obviously increases anxiety and makes you less likely to sleep. I'm getting used to it, slowly, but I hope it helps my sleep in the long run. I honestly think, looking back at my sleep pattern, that any amount of anxiety or stress directly affects my sleep. Which is why my sleep has been getting steadily worse, along with my health, since I started Year 11, and I get worse each time a doctor lies to me, lets me down, or makes false promises and gives false hope. Ie. "I can cure you, you feel like this all because of your Idiopathic Hypersomnolence." I need to learn to let go of these things, but I've never been good at moving on, or no longer dwelling on the past, so it will be really hard. But it's affecting my health, so I must try.

Blogging...
I'm wondering if I should keep going with my blog; I do know that some people read it, I'm just not sure if it's worth it. I feel I should post at least each week, but is there a point if no one really cares? Would I be better off just using my energy to write in my diary most days. If anyone has any opinions, tips or comments, I'm always happy to hear them!

An update.

2010-06-08T01:30:00.000+10:00

My diary:
So I've been writing in my diary daily, and I am actually finding it helpful. (... And painful; I've never been able to write more than half a page without my whole left hand cramping and aching!) I have named my diary, too. I find myself a little more content, or at least, less ill at ease after I have written several pages. I feel I have so much to confide in Jadzia, (this is what I have named my diary) so much that my hand cannot keep pace with my mind, which, as always, is running at a million miles a second! I would dearly love for the pain to go away, so I can write and write until I have lifted some of this weight that is dragging me ever deeper with each passing day.

I find it reassuring to know that I can always turn to my diary, even when I am housebound, with few friends who keep in touch. I wish I had more energy, or some at least, so I wouldn't always be lacking in energy, and using the next day's ad infinitum. With a little more energy, I would be able to dress, shower, wash my hair and even study, as well as write in my diary without lying in bed in between each minor task. I can only hope that I am able to sleep well soon, so that I may return to school in November and give these last two subjects my best try. I miss school; the routine, the social contact, the familarity and even some of the teachers!

If I am granted one wish this year, let it be that my sleep returns to a 11.30pm-6.45am pattern so that I can do my best each day. I fear that I bore readers (if there are any) with my repetitive posts. Hence, my diary. Jadzia shall never stop "listening" and I will always have an outlet for my emotions, one which is cheaper than a psychologist and has no office hours!

Despair, or Year 12, as it is otherwise known!
I am currently despairing, as I feel I shall receive a terrible mark for my last calculus assignment, which I must send off with a medical certificate this week. (My teacher did say it would be the hardest assignment or test I would encounter this year, and it is no wonder I had so much trouble with it, but I was so hoping to maintain my A average.) I should work on my next SAC today, which is only 70mins long, including reading time. I do hope I receive a decent mark for this SAC, as I cannot afford a low average for my schoolwork. I tend to perform badly on exams, as people with M.E. generally do; once time constraints are applied, marks go down, and forgetfulness increases. It has been proven, but, naturally, the governing body for Year 11 & 12 assessments does not recognise recent research. This illness frustrates me more than words can describe! I believe this SAC covers weeks 9-12, or the tangent function, co-ordinate geometry, and an awful lot of differentiation. I studied for a long time with my tutor, and even after she had left, so I hope the knowledge stays with me. Wish me luck, it's due in this Friday!

"The Diary Of Anne Frank"
I am re-reading Anne Frank's Diary, not because I've started to keep a diary of my own, but because I've always loved the book, and I used to want to be like Anne Frank when I was younger. (I was 7 or 8 when I first read it.) I wanted to have that many friends, be popular and fun, do well in school and have (what I considered to be) beautiful penmanship. Above all I wanted the ability she had to look at herself without pity, and analyse herself, her interactions with others and every aspect of herself. I wanted to have that kind of faith in God, and a sense of optimism.

There is a passage that spoke to me, and I honestly wonder if it could help someone who feels the way I do... "The best remedy for those who are afraid, lonely or unhappy is to go outside, somewhere where they can be quiet, alone with the heavens, nature and God. Because only then does one feel that all is as it should be and that God wishes to see people happy, amidst the simply beauty of nature. As long as this exists, and it certainly always will, I know that then there will always be comfort for every sorrow, whatever the circumstances may be. And I firmly believe that nature brings solace in all troubles." (Wednesday, 23rd February, 1944, "The Diary Of Anne Frank")

I am without any kind of faith; I seem to be unable to sustain or even start a belief in a God of any sort, and this is the only real issue I have with the passage. A few entries before Anne wrote this, her mother advised one of their helpers, who was feeling terribly miserable, to think of all the others who are miserable in the world, and said that would help to cheer her up. That is quite similar to people telling me: "There's always someone worse off than you, be grateful for what you have." I think I would rather go out to the countryside for a few days, or a week, and spend some time relaxing, writing and unwinding. It is very difficult to be at one with nature in a city! Anne seems wise beyond her years, and I would be grateful to have some of her spirit; her unwavering faith in God, her sagely advice, and her patience.
In reading her diary I have seen how much she has changed over the course of a year, from the first entries, about her life with friends, boy friends, outings and more, to her increasingly introspective life in hiding, learning to keep the peace, bite her tongue, and try to understand and get along with all occupants of 'The Secret Annexe.'

I hope that by keeping a diary, and by talking through my problems that I will be able to become a better person. Not like Anne Frank, by any means, but simply more understanding and tolerant of my family.

Thank you for reading, and if you'd like, please leave a comment! (I always love to read them, and I always try to respond.)

An outing!

2010-06-01T16:07:00.001+10:00

The outing:

I went to Officeworks! I think we only needed a few things originally, but I ended up getting some new pens (red, blue, black and purple) and two mechanical pencils. I already had pens and pencils, but I needed ones with a very soft grip, particularly for tests and exams. I get wrist cramps and a lot of pain when I write; it's such a pity you can't use a computer for Maths exams. That's just stupid! I also bought a cute notebook that I plan to use as a diary. Maybe if I write out what I'm thinking, I'll be less angry. I hope. I'll just have to wait and see. (Here's the notebook, that's just the cover)

Before Officeworks, the actual reason I left the house was for a family therapy appointment. Just to work through things while we're adjusting to the new situation, and to deal with long term things, like my illness, and the way my brother and I constantly fight. The session went okay, but it was really tiring. Plus it was only an hour long session, so to try and fit everyone's point of view in meant that the therapist had to keep cutting everyone off to start on a new topic. We've seen this therapist before, and she's good at what she doesn, but with my memory as bad as it is, I can't afford to be interrupted. Otherwise I'll forget everything and zone out.

Study...
I've done a fair bit of my calculus assignment, but it's so hard! None of the questions I've encountered have been anywhere near this difficult!! And I have to do a title page, abstract, references and acknowledgments. Basically, heaps of stuff I haven't done before. I don't know that I'll do very well. =| I don't understand why the weekly work was so much easier than this assignment, and I really wish I was able to do more of it. It counts for 40/60 marks from assignments and SACs. So this isn't good. I'm starting to regret choosing this maths, but if I'd chosen the easier one, all my work from Year 10 and 11 would have been pointless. Plus I need it for accounting. I might try to do some study soon; I'll see how I feel.

How to cope?
I really don't know how to cope; no sleeping meds have ever really worked for me, and all I'm being told is "You can feel like you're dying from lack of sleep, but you can never actually die from it." It's not helpful, and it's not reassuring. What I was wondering is this: does anyone have any coping strategies they use when things get really hard? I try listening to music, going on Twitter, Facebook and Tumblr, or blogging, but a lot of the time, I just want to sleep! How am I meant to cope with this uncertainty?

Thanks for reading, and I hope everyone is as well as they can be. =)

Doctor's appointments & a long-kept secret

2010-06-01T04:34:00.000+10:00

Doctor's appointments:
I never liked going to the doctor, even before I was diagnosed with M.E. But now, I absolutely hate it. There's the waiting room, for starters. At the G.P's, it's always so noisy, plus there's a tv on in the background showing inane daytime shows, or children's programs, depending on the time. And the people. I'm sure it's partially my sensitivity to stimuli, but the people are so noisy!! Some even shout, because they can't hear well. It's obviously not their fault, I'm just trying to give examples of the different types of noise. These noises bounce around inside my head ad nauseam, and I develop a headache and nausea after about 10mins in the waiting room. I'm always told my G.P. is running "on time" but, really, no one wants to admit that 99% of the time, there's a 30 minute wait. So that's 30 minutes of hell, and I haven't even seen my G.P. yet!
When I get in to see my G.P., things are generally fine. My G.P. is nice and understanding, but is reluctant to do much, as everyone says my specialist is practically God when it comes to M.E. I can tell you, she isn't. If she was, she would've helped me improve, not offered me Melatonin and AD's from the age of 13, to no effect. She still keeps asking if I want to try another SSRI! I hate the side effects, but worst of all, they never work!
When I see my specialist, I have to take a written list of my worst/newest symptoms and all the medications I'm on, because the records aren't electronic. They're one huge paper file bursting at the seams. And my specialist can never remember what she's prescribed me, at what dose, or when. I'm the one with the memory problems, and I'M meant to remember every time?! Then there's the requisite fight to try new treatments. The only one she's accepted was LDN. At the dose she put me on, it was just plain Naltrexone, with the added bonus of zillions of side effects. It's exhausting seeing any doctor, starting from getting up and dressing to fighting for medications like Ondansetron so I can eat and drink.

Good news!
My specialist retracted her order to all G.P's to "never prescribe anything to Alex, leave it all up to me." That was a nice idea, except for the part where she goes overseas with no warning, leaving me with no prescriptions, so I can't study, sit exams or go to school! This happened with my Year 11 exams. I was too sick to sit them, so I was passed based on my SACs and mid-year exams. I'm glad my real school is so accomodating. (By that, I mean, not distance education. They're okay, but my school is more on top of things and organised.)
Anyway, my specialist gave permission to my G.P. to prescribe most of the meds I'm on. And Ondansetron is no longer a problem! I just got another script for 10 wafers from my G.P. last week! I'm so happy, now it means I'll be able to go out with a friend to see a movie in July!! I've known this friend since I was a baby (well, our parents knew each other) but she's always there for me, and hospitals don't weird her out. Which is so nice. Basically, she's obsessed with Twilight, and I thought I'd see it with her. (I've never seen it, I don't like the look of it, but anything to get out of the house and see a friend! It's also a fundraiser, so other chronically ill adolescents will be there!) It also makes study and tutoring easier if I haven't slept much. So that's a weight off my mind.

Insomnia...
As you can see from the time stamp, it's quite late/early, depending on how you look at it! But I managed to sleep somewhere between 1am and 3am. So I'm working with some sleep. My sleep "pattern" has changed again: I go to bed between 11.30pm and 1am, wake every hour, then finally wake at 6am/7am and can't sleep again until midday. It may sound manageable, but it takes me an hour+ to get to sleep, so most nights I've had 4hrs sleep, or 5hrs broken sleep. My body can't function on such little sleep anymore, so there's no point in me getting up; I've tried. I just get a terrible headache, feel dizzy/sick and must promptly retreat to bed! I hope this will change soon.
I've stopped "clock watching" as I know it's detrimental to sleep, but so many sleep clinicians told me to keep a sleep diary. And you have to "clock watch" to keep one. (You record when you eat, have caffeine, take your meds, go to bed, sleep, wake, and get up.) I hated it, but after so many years of filling them in, you get used to it.
The reason I'm so desperate to be able to sleep, virtually uninterrupted between 11pm/midnight and 6.45am/7am is that I need to be able to function for school days that start at 8.30am. And that's not possible at the moment.
I want to return to a real school more that anything, because they handle the forms for everything, and ensure I receive my work and have it in on time. Which is the polar opposite of distance education, in my experience. It's nice to be able to work whenever you want, but losing all social contact and support just isn't worth it.

One day at a time.
I'm trying to learn to take my life one day at a time. But I've never done it before, so I'm finding it really difficult. Particularly when I'm awake late at night, and I can't stop thinking about my life: "What happens if I can't graduate from high school or go to uni?" "I'm never going to be able to support myself, and a pension won't even cover costs of living." "I just want to be normal. I want doctors to admit they don't know. I want apologies for the hell they've put me through." ... Those are some of my thoughts at about 3am, or whenever I start worrying. My whole life has been about my future: getting a great score in Year 12, going to the best and closest uni to study Arts, majoring in Latin or German, then studying Law.

A secret:
I need routine, and I need structure more than the average person. This is due to my ASD, specifically Asperger's Syndrome. This is my secret. I've got much better at social interactions, etc. but I still have a compulsive need to know exactly what is happening, and when. If my routine changes, I panic. Please don't stereotype me. You wouldn't be able to pick it if you met me. I just seem shy. The reason I've improved? My mum. She'd go through role plays of how to act in different situations, acclimatised me to sand and the colour white, (I used to tantrum whenever I saw/touched these things) and taught me how to cope with crowds, loud noises, and physical contact. I've overcome most of these things, but I still hate sand. Although, now, I probably just look like an (awfully pale) teenage girl who hates getting sand on her clothes. (I'm too sick to swim when we go to the beach.)
Does anyone watch "The Big Bang Theory"? I think Sheldon displays many traits of high functioning autism (HFA) or Asperger's Syndrome, part of the Autism Spectrum Disorder. (ASD) I'm definitely not that weird, but I am constantly angry. I talked to my psychologist about it, and, as always, doctors/psychologists don't believe me when I say I have Asperger's Syndrome. They do a double-take, and say "Who diagnosed you?" It was an expert in the area when I was 2 or 3. I don't tell many people because I don't want to be thought of as a freak. But I just got sick of keeping it quiet.

If people don't like me as I am, tough.

Anger...
The anger is a real problem, and it's probably because I hold onto anger from doctors who denied me proper treatment when I was 12, or made me miss my Year 11 exams, or changed my sleep routine permanently when I was 14. All of this anger ends up being directed at my family. I just never feel calm; I'm constantly exhausted, and angry at the world and everything in it! I hope I'm able to calm down soon. We're starting family therapy todat, and I think that will help with the constant fights between me and my younger brother. We fight over everything, because basically everything makes me sicker or makes my symptoms worse! And it's wearing my mum out.

Great, another possible M.E. case in the family?!
I hope my brother's post-viral malaise doesn't turn into M.E. He insists on keeping up with footy training 3 nights a week, plus a match every weekend, and school sport, and P.E.! I try to explain he could end up like me if he doesn't take it easy and pace himself (something I was never told about) but he is in denial. He thinks he'll never get sick. He's got a G.P. appointment today. I hope they test for EBV; they give you a month of no activity after a diagnosis of it now! I was sent back to school as soon as I stopped showing symptoms. Grr.

Goodnight!
Seing as it's after 4.30am, I'd better try to sleep again; goodnight everyone, and I hope you're as well as you can be!

Tumblr

2010-05-23T06:10:00.000+10:00

Tumblr!
Yes, I've taken another step into the 21st century; I now have a Tumblr account... I've just posted an introductory post, reblogged some funny stuff, and posted some of my fave pics. I'm not sure exactly what else to do with it. It's a mini-blogging service, right? Does that mean that when I'm too tired to write a full post here, I can write a mini one there? ... I might just do that! Um, anyway, this is me on Tumblr: http://thecabbagestalk.tumblr.com/ I figured I should try it out, as a lot of people on Facebook and on Twitter have it. I like it so far, especially the background I chose for my Tumblr. =D

Side effects...
Because my specialist put me on a dose that was so high it's classified as Naltrexone, not Low Dose Naltrexone, I got one of the worst side effects possible: lethargy/fatigue/exhaustion. So that's why I've been feeling more zombie-like than usual this past week! I also had a lot of nausea and dizziness/lightheadedness. Now that I'm down to about 6mg, I should have milder nausea and less dizziness/lightheadedness. Although the nausea was shocking yesterday when I got up for tutoring; I couldn't sit up or even drink. Thankfully I had some Ondansetron!

Maths:
The next two weeks are assigned to a two week project SAC, designed to be completed in about 7.5hrs max. After that, I have a 60 minute SAC, then I start Unit 4, which begins with antidifferentiation. I had a bit of trouble with that in Year 11, although it was quite rushed when we studied it. Hopefully I'll do better this time around! I have maths tutoring today and we're going to revise the topics my teacher said would be covered in the SAC. That way I'll be fully prepared. (I hope; Mum had a look [she's my supervisor] and said it looked really long.) The next SAC (the 60 minute one) is on calculus/differentiation and circular functions, so I definitely need to revise circular functions before that week begins. I got a Very High on my last SAC, which is an A/A+, I really hope I can maintain that for my school work and SACs.
Exams are my main worry; I get panic attacks about them, and get exam "panic" - my mind can go blank from fear. It happened twice in two Year 11 maths tests. Plus it's quite scary being in a room with just the examiner watching you. And this time it won't be a teacher from my school. =( There's a morning exam, so I don't know how well I'll do on that one, as I can't function until midday, at least. The other one starts just before midday, I think, so that should be okay. I've applied to sit them at home, so that way I can lie down during my rest breaks. I hope I get a good mark; my teacher thinks I will definitely pass, which is brilliant! She actually thought I'd been a student who excelled at maths my whole life! =o

Sleep...
I slept a bit better the other night, and I seem to be able to get to sleep by 1.30am at the moment, but I wake quite regularly. Today I went to bed at midnight, fell asleep at around 1am, woke at about 2am, then 4.50am, and I'm still awake. I tried to get back to sleep, but couldn't, so I figured I'd write a blog post. I can go to school on 3 hours sleep, it's just trying to get 3 hours of unbroken sleep. I'm really worried about my sleeping pattern because I start orientation in Nov/Dec, and I need to be able to get up at 6.30am, or 6.50am at the latest. Which means I need some solid sleep, and to be able to sleep from about midnight. I know someone my age needs 9-10 hours of sleep per night, and I need more than that because of my Idiopathic Hypersomnolence, but, realistically, I haven't slept like that since I was about 10. If one thing gets sorted out this year, or changes for the better, I want it to be my sleep. (Or "sleep pattern")

I guess that's it.
Thanks for all your comments, I really appreciate every one of them, and respond to them as soon as I can; lately I'm not able to use my laptop much at all. I'll try to sleep now, seeing as it's after 6am. If you've got any tips on how to use Tumblr, how to cope with lack of sleep/side effects/illness or exam anxiety, I'd love to hear them! =) Thanks for reading!

Good news!

2010-05-17T05:09:00.001+10:00

First of all, the good (medical) news:
My specialist agreed to prescribe LDN for me. (That's Low Dose Naltrexone, if you didn't know. ^.^) She said to take a quarter of a tablet, but didn't specify when or how to take it, or whether I can or should increase the doseage if needed. Each tablet is 50mg, so a quarter (it's hard to make it exact, even with a pill cutter) is about 12.5mg. So that's what I'm taking each night.
I'm going to see my GP, ask what the highest dose is, how I should go off it (if I need to) and how long it needs before it starts working. My specialist had never prescribed LDN before, probably because her patients trust her and don't do their own research!!
I've been on it since the 12/05/10, and it does seem to make headaches less severe and Panadol work better for them, but that could just be a placebo effect, or my mind making it think it's doing that. Because I studied for 5.5hrs today, I had a lot of back pain. It wasn't as bad as last week; I was incapacitated then, and totally bedbound, unable to move for about 4hrs. This week, it was still awful pain, but I could manage to do a few things before lying down with a heatpack for 1.5hrs and then having a hot shower.
Heat seems to really help my pain. It didn't help my rheumatism. I had a bad attack of it the other night, so I was lying down, mum was bringing heatpacks and I had my electric blanket on full. But mum's arthritis was playing up, too (our pain always seems to coincide) so we both want a definitive test to rule out all types of arthritis. But no side effects so far from LDN, because I was getting headaches before it, I think that it's just normal ME headaches.
I can only take Panadol or Nurofen while on LDN, anything with codeine will cause a reaction similar to an opiod overdose. My specialist doesn't know what it'd look like, so mum took all meds with codeine out of my room. My memory is so bad; I thought Mersyndol didn't have codeine!!

The good (academic) news:
I got my SAC in the mail last week, and I got a "Very High", which means my mark is in the 80% - 100% range. I think I got an A+, but after I saw that I got higher than a B, I was so happy I couldn't be bothered calculating my result as a percentage. So that's brilliant, because it counts for my work from Weeks 4-7! I'm really happy, but worried about my next SAC. It sounds rather complex.

Fail!!! (Or "brain fog" in the ME world)
I thought my SAC was this week, and that's why the Distance Education people had posted the SAC to my mum (my supervisor) last week. I got my weeks confused. This week is Week 13, which is more calculus/differentiation, but Weeks 14 and 15 are the SAC. It's a project on calculus/differentiation, and it's supposed to take no more than 7hrs in total. Or something like that. The week after that (Week 16) I have another SAC, which is a test-format SAC on, I guess, calculus/differentiation. Then I think it's holidays. So I'll be really busy for the next few weeks!! Although, I've already completed this week's required homework, and my teacher is visiting on Tuesday, so I can show her what I'm having trouble with, and we can work out what amendments to the requirements would be best for me.

Birthday presents:
I was finally able to go out a week or so ago and buy a new pair of tracksuit pants (one I bought in January stretched strangely, so now they're too long to wear. The fabric was waaaay too stretchy!! (On the old pair!) I still need to get this new pair taken up at the tailor's. I also bought new winter pyjamas, and a hoodie that matches them. Plus slippers. I figured I may as well get really comfortable pyjamas, seeing as I spend so much time in them! I got one blue pair (paisely blue/aqua with a royal blue top) and a purple pair (white/purple striped pants with a purple top.) I still want to buy a dressing gown, though. One of those warm ones. I haven't found one yet, but I'll keep looking! I used my gift card and some of the money I got for my birthday. There was a huge special on at that particular store, which was great! I may even get a second hoodie from there; quite cheap, very comfortable and warm.

Sleep:
My sleep is all over the place. Most nights I'm up until 6am, or until I get a headache, nausea and dizziness, (from lack of sleep) so that I have to lie down with my eyes closed, and not move. Last night, though, I went to bed at 11.25pm, woke at 3.30am, and a few times in between. I've been up since. It's about 5.10am now, so I'm going to try and sleep. I can never catch up on sleep, because in the mornings (7.30am - 9am) there's "getting ready for school noise" and in the afternoons/evenings there's "arriving home/playing PS2, etc/getting dinner ready noise" So I really need to get my sleep sorted. I have no idea how to, though. Any ideas? (Apart from anything sleep hygeine related; that's what got my sleep into this freaky pattern in the first place!)

Thanks so much for reading. Any comments, feedback, or tips would be greatly appreciated! Take care.

It's International ME/CFS Awareness Day!!!

2010-05-12T04:02:00.000+10:00

Just a short post, I think. It's quite late already, and I have a personal training session in the afternoon.

A link, for the uninitiated!
Okay, first of all: What is ME/CFS/CFIDS? Check out this link if you don't know what it is, want to know more, or are just curious.
(This link was posted on Twitter by @Stroopwaffle, and written by @DiamonDie. (Both ME/CFS sufferers; @Stroopwaffle is bedbound and unable to sit up.)
http://chronic-fatigue-syndrome.suite101.com/article.cfm/basics_of_cfsme

How to help, and what not to say/do:
My experience has been one of frustration, exhaustion, confusion and intolerance. ME/CFS is not an illness that is "in your head." Someone who suffers from it isn't "totally crazy and an attention seeking b*tch." I know I don't want pity; I want understanding, people to care, instead of dismissing ME/CFS completely. (And by doing that, they dismiss/disregard me.)
A kind word, offers of help - whether it's bringing someone a meal, or offering to help them with their grocery shopping. Even a smile, or a comment like "I love your haircut, it looks BRILLIANT!!" will make me happy for the next week, at least! You see, it's the small things that count; but money needs to be put into research. Please consider donating.

A short history:
   I got EBV at the age of 7; and it started with sore throats, every day. Then I got muscular-skeletal pain; mostly in my legs. Then the post-exertional malaise. When I went to the doctors, they would say I was either lazy, depressed, depressed and anxious or just needed more exercise. The reason for the pain was that "your legs are too long for your body."
   By the time I was 9 I had a cancer scare, and that's when my severe spinal/back pain began. I was given an injection of morphine; which broke the cycle of "severe muscular back spasms."
I developed the insomnia aspect at the age of 10 or 11; I'd go to sleep at 11pm, wake at 3am, then stay awake for at least 2hrs. Apparently I was still depressed. (Rather, I was furious at doctors who wouldn't listen as soon as they saw I didn't have anaemia.)
   At the end of Grade 6 (my final year of primary school) I developed pneumonia and a collapsed lung. It's proven that a secondary infection in ME/CFS leads to a rapid decline in health.
By the time I'd "recovered" (I still can't sing; I run out of breath all the time, but there are no test abnormalities) from pneumonia, I was in Year 7, the first year of high school.
   The first semester was alright, but my PE teacher would yell at me; she was convinced I wasn't trying. I would stay up until 3am studying, every night, getting 3hrs broken sleep at the most.
   But by second semester, my teachers were saying I'd forget to bring a book to class, forget deadlines for homework, etc. And all my teachers said "Something is wrong, Alex is so conscientious!"
   I finally found a GP who referred me to an paediactric ME/CFS specialist. This was in December of 2004, when I was at the end of Year 7.
   Things have just gone downhill; my case was ignored until I was beyond help. I still see this specialist, though she is really only good for filling forms about my illness and writing prescriptions.

What it's like to be me at the moment:
I have severe muscular-skeletal pain. It feels like there are thousands of needles stabbing from inside your bones. My muscles ache, cramp and spasm.
My limbs feel like they are filled with lead; every step and movement is an enourmous effort.
My spinal/back pain can leave me bedbound, unable to move for up to 6 hours. It's those times I'm so grateful I have an iPod.
I live, pretty much, in my room. (In bed, propped up by pillows, or lying down, immobile.)
I don't sleep like normal people, and I never wake refreshed. I wake every 10mins - 50mins, and at the moment I am awake until 6am. No one can help my sleep; I've tried everything.
My short term memory is almost gone. I forget words. I forget what day it is, where I am, or, to give you an example, I can have a key in my hand, but not know what it's called, or how to use it. Even if I did, I might not have the strength to reach the lock! I can't hold conversations very often; it is overwhelming. I can't understand or keep up with it.
I am overwhelmed by the slightest noise, bright colours, smells (anything from dinner cooking to a deodorant.) This means that I develop intense headache/nausea when I am watching television, and someone walks around the room, eats, or talks.
I am lonely, and sick of being told "it's all in your head" or "stop whining; you're not sick" Studying by distance education means I am even more lonely and isolated. I struggle to study one subject; to study for 6hrs means I will be bedbound for the next 3 days or more. But that way I get all my homework done on the weekend.

Why am I telling you this?
Because people seem to relate best to personal stories; I have kept mine brief. To catalogue all my ME/CFS experiences between the ages of 7 and 19 would be too long a post! I only hope that you read this, and take something away from it. Whether it spurs you to donate to your state's ME/CFS support/awareness group, or to promote awareness, or to volunteer. There are many who are sicker than me, and would need more help. I have my mother. I'd be lost and unable to care for myself without her.

Finally:
I hope you've already bought your blue ribbons, or purple, for Fibromyalgia!! Wear them with pride!!(They can be purchased from your state's ME/CFS support/awareness group) Raise awareness, be a voice for those who are without one. Please.

Distance Education

2010-05-01T12:06:00.000+10:00

Good news!!!I got my work for Week 9 completed last Saturday and my work for Week 10 was finished on Thursday, so Mum was able to mail them both on Friday. I felt so much better once I'd finished my work; like I wasn't weighed under anymore. There's just so much work that it overwhelms me & makes me sicker. But I got my work back (Weeks 1-4) and I got everything right, except for one or two questions. My teacher thinks I have a "really good understanding" of all the concepts, even graphs!! So if I do that well on my SAC, I should end up with a B or an A as my mark so far. Which is brilliant, I've never been a good maths student! She's still marking the SACs for my 'class', but I should receive it soon. I use registered mail for all my distance education work & paperwork/forms; it's reliable, can't get lost, and you get a delivery receipt. I've got a SAC in 3-4 weeks, I think it's on differentiation/calculus, so I should be okay with that one. I'm just not great at using my calculator. It's a TI-89 Titanium. (If anyone has/had one and can give me some tips on how to use it, I'll be eternally grateful!!)

Sleep...
I haven't been sleeping much at all. Two hours' broken sleep some nights, 5 hours' broken sleep other nights. The longest I can stay asleep for is about an hour. So I wake hourly on a good night, but every 10mins on a bad night. Today I went to bed at about 1.20am, fell asleep around 2.15am; woke at 6.15am and 8.40am. (Haven't slept since.) That was a pretty good sleep. I just wish I could've slept 'til midday so I could have, like, 8-9 hours of sleep before maths tutoring. (Which is at 2pm.) If I could sleep for 7 hours a night, without waking, my pain would be greatly reduced, I'd be able to function and I wouldn't feel like an early onset dementia patient!! (Seriously; I forget sentences, the names of objects, where I'm going, what a key does AND what it's called... I can get to the front door, have my key in my hand and go: "I don't know what it's called or what it does. How do I get in?")

Another "specialist"
Mum did some more research & found a doctor who is about 1/2 an hour from us, and he actually TREATS pain!! With real painkillers!! Goodbye, Panadeine Forte, hello sleep and pain relief!! He also uses LDN, which is highly recommended by some overseas Twitter friends. One problem: no appointments until SEPTEMBER. I'm on the cancellation list, but as soon as I can manage a phone call, I'll ring up and explain my situation; Year 12, immense pain, sleep deprivation, exams in October/November, my need to graduate next year. Hopefully I can get an earlier appointment. Fingers crossed!! But don't worry, I'm not getting my hopes up; aside from pain relief. I'm not going to be devastated and have a relapse caused by another doctor making promises no one can keep.

Organisation...
I'm usually an organised person when it comes to schoolwork, study and homework, but it's got so much harder now I'm this ill. Plus I get panicked and stressed very easily, so once I mail something, I worry that it hasn't got there/I wrote the wrong name or address/it's been lost. So I'm an anxious person to say the least. This year, I've let things slip. The work being 7 weeks late meant I slid downhill and was constantly overwhelmed. So the necessary forms aren't being filled in on time (also because they're sent 5 weeks late) but it's not helping. Thankfully, there's email, which I can check in bed on my iPhone!! So I have some Special Provisions info for my exams in my email inbox, plus the booklet is in the mail and should arrive in time for my Wednesday appointment with my usual "specialist." I also need to change one of the exams. It starts at 9.45am or something, and I can't function until after midday. So I need aforementioned "specialist" to put in a request for a change of time. She's great with paperwork and the "typical" ME/CFS cases, but isn't good for severe cases. Also she quote: "won't think outside the box in regard to treatments." End quote. Even L-Carnitine is to risky for her. So it's Melatonin (never worked) or anti-depressants. (Never worked, made me really sick.) So, yeah. I'd better be more organised for orientation this summer and school next year!! Hope my uniform still fits; I've been eating 3 meals a day some days!!!

Formspring.me:
I got some rather abusive/offensive questions on formspring.me when I said "ask me something" on Facebook & Twitter. I have an idea of who it was, and one of the questions I didn't answer because it would give away information like my location. (Stupid idea on the internet.) So I've disabled the "anonymous" option on questions. But feel free to ask me any questions that are civil and not offensive. =)
http://www.formspring.me/thecabbagestalk

I'll blog again soon:
Thanks for your comments, they mean the world to me. It's nice to not be called a liar", "whinger" or "faker" just because I try to raise awareness about ME/CFS and actually talk/blog/tweet about it!!
Hope you're all well, take care.

Alex. x

Doctor Who, & a little good news!

2010-04-21T05:02:00.000+10:00

The 11th Doctor!!
I watched the first episode with Matt Smith, & it took a while, but I've got to say that I do like him... A lot. He's quirky & funny, but is lacking the dress sense of the 10th Doctor. (Who is still my all-time fave!) I'm going to keep watching. I also like Amy, his soon to be (I presume) companion. She reminds me of Donna! I really liked the episode, though it was slow in a few parts. I absolutely hated the complete overhaul of the theme music, logo, TARDIS interior & sonic screwdriver. I loved the continuity of "wibbly-wobbly... timey-wimey..." It was brilliant, & I love anything that links back to my fave Doctor. I'm counting down the hours (practically) until the next episode: Sunday night!! If any of my Twitter followers are reading this; please no spoilers!! =P

Now, the good news:
My mum mailed my SAC & SEND tasks from Weeks 1-4 yesterday, so if the address/name/location are correct, my teacher should receive it today. (Wednesday.) That means I'm no longer behind in my work!!

Complete exhaustion...
After the marathon study session & maths tutoring & finishing my SAC, I was exhausted the next day, Sunday. I expected that. But it's now Wednesday & I can't see any improvement. I'm doing 3x the work I did when I attended a real school, I have no social life/contact & receiving any form of communication is really dodgy. You never know if it'll be a month late, on time, or 7 weeks late. So the stress from that isn't helping things at all. I still haven't been able to get out of bed most days until 4pm. My alarm goes off at 2pm, but I'm too weak & dead tired to move. So I just lie there.

Week 9 SEND tasks:
I obviously can't work on the Week 9 SEND tasks tomorrow, as I have a personal training session. (Yes, I'm still persevering with that.) So I'll have to do it on Thursday, if I have any ability to sit & study. I'll have to take meds to do so, but that's a sacrifice I'm willing to make! (It's really hard to get these particular meds.) It's a short bit on the "tangent function" & something else where you mark key points on 2 graphs, then add them to come up with an in-between graph. I'm just so wiped out, it's terrifying me. Also, it's about 5am, I haven't slept yet, & need my sleep really badly.

Good morning/goodnight...
It's getting early in the morning, so I'll attempt sleep for the 1000th time! I hope my readers are well, & if anyone has any feedback, tips, or just would like to chat about ME/CFS, or Doctor Who, or something, then comment!! I read all of them! =D

Lots of stress, too much study...

2010-04-18T02:27:00.000+10:00

First SAC of the year...
My SAC didn't arrive in the mail like it was supposed to. So my teacher tried emailing it. Her attachment kept crashing the iMac. So she sent it in the message body of the email, & left work. At 4.15pm. At 5.02pm the message arrived, but the SAC was riddled with errors - a Yen symbol replaced the infinity symbol throughout the SAC, etc. But when I emailed my teacher, she said that it didn't appear that way on her computer, but that the Yen symbol did mean infinity. So I had several panic attacks & became hysterical. (The idea that I was going to fail & I'd missed basic concepts of maths was overwhelming.)
Then my mum left voicemail messages for the student wellbeing person, the year level co-ordinator, the Principal & my teacher outlining the situation they'd placed me in. Including the fact that THEY sent my work 7 weeks late & expected me to magically do 42 - 56hrs of work over the holidays to catch up. Despite the fact I'd explained my situation & had applied on medical grounds.
So it arrived in the mail the next day, (Thursday afternoon) my teacher apologised, as did the year level co-ordinator & the Principal. The SAC counts for the work from Weeks 5, 6 & 7, & I have an extension until this Thursday! I started it on Friday, & finished it today, after tutoring. I texted my tutor last week with a list of the concepts I was finding really hard (graphs; particularly reflections & dilations, as well as circular functions) so we revised that. Luckily it helped some with the SAC. I think I'll get an okay mark. I don't wanna jinx it, lol.

Maths tutoring...
So I had Maths tutoring yesterday, & it went for 2.5 - 3hrs! After that I worked on my SAC. Then I ate... I ended up starving by the end of it! But with tutoring, we covered all of Week 9 (this week beginning Monday) & it was relatively short. Basically just the "tangent function" & some odd thing where you add intercepts to come up with an in-between graph. F**k knows why you'd want to, but, yeah. I learned that. Also, I hate circular functions, I hate graphs, so the "tangent function" is irritating. It's a graph that's circular functions. I guess I just hate graphs & circular functions because I'm not that good at them!
So after resting today, then sending my work off on Monday, I'll attempt the SEND tasks for Week 9 on Tuesday, maybe. If I don't get sick, & everything goes according to plan, I should be on track until the next SAC. It's on differentiation. (Calculus...) I like it more than graphs, that's for sure!

Sleep...
I've been trying to go to bed between midnight & 1am for the past week or something, but, as you can see, tonight, I ceebz. I'm wide awake, it's almost 2.30am, & there were some really good shows taped on the Foxtel iQ. Plus I wanted to stay up until I wasn't dizzy/feeling sick/had a headache from overdoing it yesterday with all that maths! I've tried reading to make me sleepy; no matter what I read, whether it's tax law, news sites, actual newspapers, novels, Shakespeare, poetry, blogs, medical information I've printed off, medical sites, blogs; anything, it doesn't help me sleep. Sometimes just watching tv or DVDs on my laptop until I'm sleepy works. That's why it's great having all those Skins & The OC DVDs! But I am hoping to get a serious sleep pattern going soon, in anticipation of exams & (hopefully) school & graduation next year. I still want a decent ENTER, but right now, I'll settle for getting back to school!

Goodnight!
Well, it's nearly 2.30am, so I'm going to try & sleep now. I love it when anyone posts a comment, or gives feedback. It's nice to know people out there are actually reading this, & some of you understand. I've since downloaded a lot more apps for my iPhone, so there are heaps of things to keep me occupied when I can't sleep, am bored during the day, or want to multi task... Watch tv & use an iPhone. =p Also, is it just me, or are The Killers mentioned in the song "Boys Boys Boys" by Lady GaGa? I could swear they are. Then again, I have ME/CFS induced brain fog!! Hope anyone who reads this is well... Or as well as possible. =)

iPhone!!!!

2010-04-10T16:23:00.000+10:00

iPhone!!!!
I got an iPhone today!! I'm so excited!!! It's a black, 32GB iPhone. It's awesome, but I only spent about 10mins using it; then I put a protective screen cover on it, & you're supposed to wait 12hrs before you turn it on. I put it on at 2.50pm. It's now 4.30pm, so I may just wait 6hrs. That way I can load some apps on to it tonight! One of my friends recommended Echofon for a Twitter app, & suggested I get a Facebook app. Any other suggestions for games/apps I should get? My brother loves something called "Doodle jump" ... Or something. Don't quote me on that. There's also a horrific app where you can kill a cartoon bunny. As a 13-year-old boy, he loves that app. lol.
It took a lot of persuasion, from me & my mum, but my father finally caved in; we ended his contract a couple of months early, paid an exit fee, then used my sim card for the iPhone, so I've still got the same number, just my father has the more expensive plan. =o (His is a $39 cap + $14 for the iPhone per month, mine is a $29 cap + $8 of 500MB internet/data use per month.) My mum argued that seeing as I'm up all hours, & am at home, don't cost much (you know, I don't go out, so no expensive shoes, dresses, concert tickets, whatever) it'd be a great thing to occupy me. Plus I deserve it. =p And a lot of my friends have them. When it was first released, my contract had expired, but my father said it was too expensive to get. (It was, it was probably a $69 cap per month + $$ for the iPhone!) So now it's cheaper, I have less to think about, like if I forget my iPod, I have my iPhone, & I don't have to constantly restart my phone to get access to internet at 3am. It can access the home wi-fi. =D I can't wait to find out all the features & apps I can get!!

Maths...
I had tutoring at 9.30am today, last night I went on a Starlight escape to a comedian's show, & I didn't get to sleep until about 1.40am, woke at 6am, & didn't sleep again. So I went on Twitter, complained. (As always! =p) Then after a few hours I got up, took my meds, had a shower, had breakfast & got ready. I went pretty well; we've nearly finished week 7, so I'm up to date in that sense, but as for the SEND tasks, I'm up to... Week 5, which I've just started. My SAC should arrive on Monday, & I have all week to do it, (well, I only have 50mins for it, but I can do it any day, or over a few days) & tutoring is on the weekend, when we'll start on week 8. I just hope I can catch up to week 7 before next weekend. I did ring my teacher. (Well, my mum rang my teacher, who called me.) She said I can do half the SEND tasks if I want, use my calculator, & skip the analysis questions, unless I think I can do them quickly. I just need to send in enough work from each week to show that I grasp the concepts. I really do wish my work hadn't been so late. It's not like I need any more stress!

Doctor Who
The Easter episode of Doctor Who is airing on iView (on the ABC's site) on the 16/04, & it's on tv on the 18/04!! I'm really interested. I want to see what sort of a Doctor Matt Smith will be, & I'm willing to give him a decent chance. But David Tennant will always be my Doctor! I've heard he's quite quirky, which sounds good. A Doctor like Christopher Eccleston's takes a lot of adjustment. But he could be funny, at times, which I liked.
I downloaded a whole lot of awesome desktops/backgrounds/wallpapers the other night; all of the 10th Doctor. I picked the ones that look amazing, or mean something to me, because of the image or the quote. They've got great imagery with quotes & all sorts of things! It's amazing how much great stuff is on Google images. Other wallpapers are just awesome because it's the 10th Doctor. =p

Pain...
I'm in more pain, my back is pretty bad today because I haven't slept enough, haven't spent any time lying down since 8.30am, & have done a lot today. I went to one store nearby to get the protective screen cover & case for my iPhone, then went to the big shopping centre to get the iPhone. The main store had sold out (within 2hrs of me phoning) but the kiosk on the next level had some, so that was good. It was a lot of walking, though. Improving my posture hasn't improved my pain yet; it's still getting worse, & it's migrating. It used to always be severe lower back pain that radiated up my spine, now it can be in the middle of my spine or even in my neck. Or just my whole back & spine. It's really hard to cope with. Also, I had blurred vision the other night, which scared me, because it hasn't happened since I was on the Gabapentin. It went away eventually, & I still managed to do some maths hw, which was good. =)

Hello?
I don't know if anyone reads this anymore, because I'm not getting any comments... Seriously, I don't mind whether it's a recommendation for apps, how to layout my blog, or your experiences with ME/CFS; anything positive/constructive, really. I'm happy to hear it! I hope I am reaching someone, rather than just blogging for no reason.

Busy & stressed!

2010-04-05T04:13:00.000+10:00

My past week:
On the 27/03 & 28/03 I had two hours of Maths tutoring each day to catch up; I'd missed the previous week's session because I went to see a movie with a friend, & it was my birthday that weekend. One of the worst ever. So it took me a while to recover from that. (In fact, I'm not sure I have recovered yet.)
On the 30/03 I had a dentist's appointment, which was exhausting & I also got my iPod fixed & looked at Sportsgirl.
Then on the 31/03 I had my first personal training session at the gym, which went well, but I was incredibly exhausted as my younger brother had a friend & the friend's younger brother at our place all day.
The next day (01/04) I had a hair cut/colour & it took a few hours, but it was nice to get out of the house & do something that didn't involve ME/CFS for once. Then I noticed a sale at Cotton On & the Bonds outlet, so I bought a loose top that matches my pajamas for $5 from Cotton On, a jacket & long sleeve t-shirt from the Bonds outlet. Then I was exhausted.
On Sunday (04/03) I went to the footy after an awful weekend, thanks to my father. I had a good time with my half-brother from Germany, his girlfriend & my family. (Excluding my father.) After the footy match we went to the Hilton to have a coffee & some snacks, then caught a taxi home.

My further exhaustion & feelings of being overwhelmed:
I got back at about 9.50pm last night, & had to shower & wash, dry, straighten my hair & do my Methods hw which I'd been too busy or wiped out to do all week. I've finally got all of week 1 ready to send in, & all of week 2 except for 1 question. Just 5 more weeks of work to be completed by the 11/04 & I'm set. Then I have a SAC the first week of term, but I'm allowed to take rest breaks, etc. plus my mum is supervising me. So that should quell some of my nerves/panic attacks/anxiety about exams/tests/SACs. I hope.

Sleep: (or lack thereof)
It's 4am & I haven't slept yet. My body is keeping me awake, despite the fact I've taken my meds, because it knows I have tutoring at 1pm, & my body thinks I'll oversleep. It's stupid. I need sleep for tutoring, so my body ensures I don't sleep before tutoring. It's torture & a waste of my valuable meds! I'm going to go insane from lack of sleep. I either get to sleep by 4am & wake every 10mins or get to sleep by 8am & wake every 30mins. Both are exhausting, both cannot be classified as sleep, & no one can help me. I'm on my own here. I've tried everything & nothing helps. Exercise seems to make it worse, stress obviously does & I'm stressed out of my mind.

So busy & so desperate to sleep:
I need to get to sleep!!! My half-brother from Germany & his girlfriend are coming over after tutoring for an early dinner & also so they can tell us about their trip through central Australia. I must study, I must pass, I must get a good mark, & I must return to school next year. The isolation is awful & so is being stuck at home. I just want the energy & ability to escape for a few days. I'm not coping anymore.

Expect another post soon, unless I get too sick to use my laptop again!

iMac

2010-03-30T01:12:00.000+11:00

YAY!! ...... Oh, crap..... Oooh, cool.

We finally have a functioning computer!! I've never had a mac before, but we've now got an iMac as the family computer; though I've been on it all night! (That's the "YAY!!") I'm so excited to have new music, but panicked that my iPod won't fully sync, it keeps saying: "The iPod "Alex's iPod" cannot be synced. The required file cannot be found." (That's the "Oh, crap.") It's, like, 1am, & I'm so stressed, annoyed & confused. I bought $110 worth of music, & not all of it may have synced. Oh, btw, it's not my pension being spent on Rammstein, Lady GaGa P!nk, blur & more, it's my Christmas & birthday iTunes vouchers. I have about $10 left, I think. I've been making a list of songs I want ever since our pc decided it wouldn't co-operate with iTunes. (It did this by taking 15mins to open iTunes, then crash when I clicked anything at all.) It was a very manipulative PC. lol!! Oh, the iMac has a WEBCAM!! (That's the "Oooh, cool" bit.) It has this thing called Photo Booth, & you can take pics using aforementioned webcam with various effects & backgrounds. It's awesome, but it also means I'll know how to look halfway decent in actual pics. Practice should make decent. (I'd rather perfect, but I'll never look perfect in a pic!!!) Seriously, I'm not photogenic. I may have to take my iPod to the store & see what the problem is. Must ask mum when she can take me. That is, if the iTunes updates don't fix the problem.

Woo-hoo!!

I read in the paper (well, the newspaper's site on my mobile) that 'The Simpsons' vocab has entered ours. But the "woo-hoo!" part is that I'm finally over my virus, my second in three weeks, & should receive info from my distance education teacher soon about how many 'send' exercises & reviews I must complete. I really hope I can stay in Methods this year, & graduate next year, I really don't want to get worse. I slept rather well last night, luckily. I got 4hrs' sleep without waking! Then the iMac was installed yesterday afternoon, & I spent all evening up until now, pretty much, on the iMac, buying music, making playlists & generally having as much fun as I can possibly have, being me. Also, with the thing about posture supposedly improving my pain levels; it's not. It's so much worse!! But I'm gonna keep going, to either improve, or prove my specialist wrong. I love doing that. *evil grin*

Goodnight...

Well, it's about 1.10am now, so I should check on the progress of the iTunes downloads, & go to bed. Rest my aching bones & all that. =p Also, I'm seriously devastated about Skins. A whole new cast for series 5?! But the site says series 4 is available on DVD; I'm hoping they mean worldwide, but it's unlikely. As ever, I live in hope! Goodnight. =)

STRESS!!

2010-03-28T19:40:00.001+11:00

Distance education...
My mum rang up the Year 12 co-ordinator for distance education during the week, to ask when I'd be getting a schedule, or some SACs, etc. I then found out I was 7 weeks behind, & the start pack (coursebooks, guides, CD-ROM, etc.) had been sent to us in FEBRUARY, but never arrived. Fail. So I got hyper stressed & had a panic attack. It wasn't until my teacher called me the next day (the 24th) & I explained what I'd covered that I found out I wasn't really 7 weeks behind, I was just missing some key areas: graphs, because they hadn't been covered in the textbook yet. So she said to do the 'send' exercises, & if I had any problems, to look at the coursebooks & explanations, then call/email her if I needed further clarification. The thick coursebook is divided in to weeks (as in weeks of a term) & each week you need to do all the exercises & refer to the thinner coursebook for algebra consolidation exercises & send in the 'send' algebra review exercise(s) & the 'send' work at the end of the chapter. The 'send' at the end of the chapter is 2 - 3 pages long, usually, & there are looooong analysis questions, too. I've nearly finished all of weeks 1 & 2, & have made a start on week 3. I also emailed my teacher to find out how many of the 'send' exercises I need to complete & send in. Otherwise it's waaaaaay too much work for a 2 week holiday break. So stressful!! ... This is a pic of all the work that arrived: http://twitpic.com/1ae3ep

Another virus...
I caught another virus last Monday, probably because when mum went to the gym, her personal trainer was really sick, so I caught it, as I have a really low immune system. (EBV + ME/CFS + secondary infection = low immune system) It was awful. I felt like I usually do (chills, running a fever, aches & pains, headache) but 100x worse & I had a really sore throat that just wouldn't go away, plus I had 'the sniffles'. Badly. I'm still feeling a bit under the weather now, but my tutor noticed the difference in my appearance on Sunday, as opposed to on Saturday. (I'd improved; my voice was more normal.) Imagine if she'd seen me on Wednesday! =o

Flu vaccinations...
I can't get the 'flu shot, because it lays me low, or makes me exhausted/sick for at least 1.5 weeks afterwards. That's a luxury I cannot afford in Year 12. Seeing as I'm practically housebound, I don't need the vaccination, plus with a low immune system, it's recommended in a lot of countries that you shouldn't get the swine flu vaccination unless you work/study, etc. in high-risk areas, like schools, or hospitals. So I may have to get it next year, but I'll ensure I get it on the hols. No reason to fall behind in SACs & work if it can be avoided. I really hope there is a "next year", though. I want to go back to school & graduate so badly that I can't quite explain it in words! I just have to improve & must graduate. Then I can stress about uni. (lol!)

The week ahead...
If all goes well, I'm going to the gym (to see a personal trainer, finally) on Wednesday afternoon, having my hair cut Thursday afternoon, & possibly going to Ikea to get a new wardrobe. Possibly. (I also don't know if we have to get my shelf taken down so the wardrobe will fit. My current wardrobe doesn't fit all my stuff, & isn't great.) Then on Saturday, I have maths tutoring again in the afternoon. (I had it Saturday, and today this week, to make up for last week's missed lesson.) I love Ikea's cafeteria. Particularly the free refills for soft drinks. =D It'd be a nice outing.

'Alice In Wonderland'

2010-03-21T17:40:00.000+11:00

'Alice In Wonderland'
Yesterday I finally got out of the house, & went to see 'Alice In Wonderland' with a friend I met during my August admission to hospital last year. I thought it was a great film & the special effects were amazing. Johnny Depp was brilliant as the Mad Hatter... He does mad so well! I thought the actress who played Alice did a really good job, too, although her face was a little emotionless or blank at times. I didn't see it in 3D - it gives my mum & younger brother migraines, & made me sick the last time I saw anything in 3D. It was amazing to go out with someone around my age, instead of being stuck inside, or only going out to get clothes with my mum. Hopefully I can do it again sometime soon, I know that today I'm really achey & tired.

19 today...
Today was my 19th birthday. To be honest, I don't feel any older, but I think that might be because I haven't had a chance to be a teenager. My life pretty much stopped at 13. I can't even get my learner's permit; because of the years of sleep problems/deprivation, I could fall asleep at the wheel. Then there's the part where I can't focus on Methods some days, never mind a road with multiple distractions, plus learning to drive. I think if you wait until you're 21 to try for your learner's, the whole process of getting your license is fast-tracked considerably. So I might just do that, unless I magically improve. This has been my worst birthday... ever. The last time I was this sick was when I was 14, bed-bound or hospitalised. All my friends are at uni, & I'm stuck here, doing distance education. Things suck at home, too. (I'm not going to talk about it here.) ... I don't want to get any older. There's no point. I just get older & have nothing to show for it. I've really had it with ME/CFS. I never thought I'd get this bad, again.

Presents...
I'd asked for it not to be a birthday this year, so no presents, or cake, etc. But my mum went ahead & got me an iTunes voucher, 2 really pretty pill containers (they have flowers on them, each is a different shade of blue) & a voucher for my local shopping centre, so I can spend it at any store! Oh, & a Kinder Surprise egg. I used to love those when I was little!! My brother got me an iTunes voucher, too, & they both wrote really lovely things in the cards. My father couldn't have forgotten it was my birthday, but took a sheet of A4 paper, folded it in half, wrote 'Happy Birthday' on the front, & said he knew I'd get better, because I was so determined, & that he was sorry he couldn't help. I wasn't annoyed about the fact that he could've got me a card, or a present, (I asked for a happy, argument free day, which didn't happen) it was that he didn't realise that he can help. By reducing the stress. I say it every week. I guess you can't get through to some people. My half-brother from Germany also got me a present. It's a German picture-story book. I will find the energy to figure out what it says; translating the birthday card was tiring enough! (It's got a lot of words...)

Doctor's appointment
My specialist thinks things will improve dramatically as soon as I stop stressing & stop having panic attacks. (Should that read: "being put under so much stress"?) She also thinks that my back pain will be fixed by me sitting up straight. Which is BS, although I'm trying it, purely to prove her wrong, AGAIN. That's what she said when I was 14, so I improved my posture by 15, but when I get worse, my posture gets worse. I literally do not have the strength to hold myself upright. I've exhausted all my options for pain relief, & my scoliosis is still "mild"... But I just wish someone would listen when I say "The only thing that stopped this pain was an injection of morphine when I was 9 years old. The pain disappeared for months, only to reappear the following year, & worsen as my ME/CFS worsened. Uninterrupted sleep is the only thing that helps." She laughed when I explained I was worried about being sick & dependent on the disability pension in 20 years' time. It's not funny, but she thinks it's ridiculous I should worry about my future. If I've seen all the specialists, tried all the regimes, & nothing has helped, not to mention the fact that my specialist admits she doesn't know what to do anymore, why shouldn't I worry? I'm not getting better. I wanted a life, I wanted to go to uni & study Law. Now I might just be stuck in this house forever.

Finally...
I guess that's it. A pretty depressing post, but there isn't much to my life anymore. It all gets consumed by ME/CFS. I haven't even finished last week's Methods homework, & my tutor might assign me more via Facebook to make up for the fact we couldn't have a session this weekend. I might check if Skins has loaded yet. I think it's the series final.

Colds.

2010-03-06T22:11:00.000+11:00

A cold after a few hours out...
After I went shopping I managed to catch a cold/virus. I've been sick all week, with chills, a fever, sore throat, no appetite & loads of aches & pains. I did a bit of my Methods homework, but I'm finding it really difficult. I'll ask my tutor to go through it again on Monday. I figure I'll be completely exhausted for a while afterwards, but I just can't afford it. If only I'd got this bug on the holidays!

Methods & the future...
I'm finding Methods more difficult every week. I really hope I can get okay grades, but it's a struggle to just do the homework. I'm not sure how I'm meant to return to school again next year, for two subjects, but I try not to think about that. I need to get through Year 12. It's not like I got ME/CFS after high school, or after uni. Right now, I have no qualifications. That's hard to live with, especially with all my friends now at uni.

Exhaustion & stress...
I'm incredibly stressed, & that doesn't help, but it's scary to contemplate being stuck in bed & the same house for the rest of your life. I still don't sleep well. I found a letter from my GP saying that at age 11 I was complaining of getting to sleep at around 11pm - 12am & waking at 3am, staying awake for a few hours. So that's at least 8 years' worth of sleep disturbances. I can't imagine what it's done to my memory, etc. I just hope it's reversible. I don't want to get any worse... Anyway, I'm too tired to write any more, so I guess that's it. =\

I fail at Maths.

2010-03-01T00:27:00.000+11:00

Maths homework...
I tried to do my Methods homework during the week, but the two nights I was able to do so, my younger brother had homework. He took 4 hours to do it. It's his first year of high school, so he's not used to homework, being assigned books, having a diary/planner, etc. So I had to do nearly all of it on Saturday. I did most of it, but ran into trouble with a few questions. I misread one question to do with polynomials, and expanded it, instead of giving the number of terms in the equation or something. So that's a fail. Then, I spent HOURS doing another binomial expansion question (it actually needed expanding) only to find I had the wrong answer. So I showed my tutor yesterday, she looked at the answer for a minute, & went: "They wrote it the opposite way! See, we'll go through it, I bet you got it right!" I did. I just fail for not checking how my textbook decides to write solutions.

Maths tutoring...
So yesterday we covered 1.2 (Systems of linear equations) & began 1.3 (Algebra of exponential & logarithmic functions) in my textbook. Systems of linear equations in two unknowns, parallel & coincident lines, simultaneous linear equtions in more than two unknowns, matrix representation of systems of linear equations, inconsistent systems & laws of logarithms & changing the base of logarithms. (The last two were from 1.3) I found it harder than last week, but my tutor thinks I'm still doing well, it's just that I always assume I'm wrong with my working out or answers, so I waste more time, & get anxious, too. I'm a perfectionist, which isn't good when Maths isn't your strong suit. I think my brain took most of it in. I really hope it did; I just know that I was wiped out & so was my tutor after 2.5 hours of Methods! I have quite a lot of homework again, plus some extra in case I "get bored." I'm not sure that I'll become bored enough to do that homework! =P I plan to copy out the notes & examples into my new exercise book on Tuesday, as per last week. Hopefully I can make a start on the homework, then, too.

New clothes...
So I'm planning to go & get a new pair of jeans & some t-shirts tomorrow. It hinges on whether I sleep well, & my pain levels when I get up at 11am... ish. I realised that a lot of my t-shirts were black/worn, & I've had nearly all of them for 2+ years! (Except for the 3 I bought at the Bonds outlet.) My jeans are two years old, & they are wearing thin, so it's best to get another pair before my jeans actually wear out! Plus I like buying things, it doesn't matter how small. It could be some nice pens, or a hat, anything, really, because it gets me out of the house & takes my mind off my disability.

Finally...
I guess that's about it. Not much happens in my life, apart from study. I tried to watch the new episode of Skins, but can't get it to play past 43mins, the episode is 46mins long. I'm hoping I haven't missed much. I figure I can catch up next week! I'm getting consistently worse, so my mum will try to make an "emergency" appointment with my specialist. We have a lot to discuss. I'm worried about my brain, & how it will function if I improve or ever recover. How does it recover from years & years of sleep deprivation? I know my memory is getting worse; I can have my house keys in my hand, but not remember what they're called, or what they do when I'm having a really bad day. Or else my eyes ache, I feel like I've got the flu, & my spine has excruciating pain radiating outwards, & upwards unless I lie down in bed or sleep. No painkiller will dull the pain enough for me to function. I just have to get myself together, get referrals, & sort some of this crap out. Anyway, that's about it from me, I'm going to try & sleep now!

Maths

2010-02-22T01:10:00.002+11:00

Maths tutoring...
So, I had maths tutoring for the first time since last May, the whole 2.5hrs, and it went pretty well. Still on the first chapter, but it's slow work. Particularly the binomial expansions & Pascal's triangle. (Curse you, binomial expansions!! Pascal's triangle, too, so damn confusing!) I was doing really well (as my tutor said to me & my mum) particularly as I remembered polynomial division, without having revised it. I like polynomial division, when it's not a complex equation, it's almost relaxing. Like simple algebra, you can just do it almost without thinking. Or like me talking about my illness in German. Becoming second nature, lol. So 1.1 is "Algebra of polynomials", and I covered the remainder & factor theorems, long division of polynomials & factorisation, equality of polynomials, solution of polynomial equations, equations reducible to quadratics, equations involving higher degree polynomials & Pascal's triangle & binomial expansions. Then it's on to 1.2 next week: "Systems of simultaneous linear equations"... With matrices, yay.

Stationery & payback time...
I have one notebook from last year for notes & working out, but then I copy out the examples & notes into a new notebook, in nice colours. (Scents, too, they're Smiggle pens.) That should help me remember more of the equations! Methods is blue, so it's a blue display book, blue exercise books, blue pencil case & butterfly binder folder. My hand was soooooo sore after tutoring, though. I haven't really needed to use a pen for more than 10mins since my November exam! Of course, my back was killing me, too, as punishment for getting up early, (woke at 6am, didn't sleep again) studying & sitting upright. I expected it, & I don't think it was as bad as it could've been. I took Nurofen before tutoring, for a headache, which dulled the pain a little. Then I had to turn to my Panadeine Forte, which I ration incredibly strictly. I should really get a referral to an orthopedic surgeon for my back pain & scoliosis; I saw one when I was 9, but haven't seen one since. Everyone goes "Oh, you have ME/CFS" ... And dismisses the pain.

A new routine?
I'm considering trying to get up each day between 11am & midday, & trying an afternoon nap to catch up on sleep, then trying to go without the nap. I'll find out which works best, because I've found sleep hygeine & sleep regimes to be a bunch of BS. They didn't help, they made me worse, or had no effect, no matter how many months I stuck at it. I've got an appointment at the gym for my personal training session on Thursday afternoon, which I can hopefully attend. I need a new pair of jeans & some t-shirts; so that's another reason to get out of the house! I'm going to try to go out as often as I can, I'm going stir-crazy without school, not being able to catch up with friends, all of the stuff that comes with ME/CFS. Even if it's just down the street to go to a cafe for a drink with my mum, that'll do. It's awful being stuck indoors. Even if there's really good shows on tv.

The 10th Doctor, gone...
Last night was the second part of the "End Of Time" specials. David Tennant's Doctor regenerated. Into Matt Smith. I am debating between giving the guy a go as a Doctor (by that, I mean 1 episode) or refusing to accept that David Tennant has left, & reliving the series on DVD. Repeatedly. I like the sound of the latter... I heard a rumour they're changing the TARDIS, to go with a changed Doctor. I'm sorry, but YOU CANNOT DO THAT!!! It's the TARDIS, the blue police box, & it will not work any other way. On a similar note, why couldn't David Tennant have stayed for another year or two? Just 'till I graduated from high school. It was nice knowing I could escape for about an hour, once a week, with an eccentric character like the 10th Doctor. (Who reminds my mother of the 4th Doctor, Tom Baker!)

Is there some comfort despite the 10th Doctor being gone?
There's supposed to be another series of Torchwood on it's way, or in the works... That's a little comfort, I guess. But Captain Jack Harkness is no 10th Doctor. Plus, after all that happened in 'Children Of Earth', how will Torchwood continue, exactly? Will it suck, like The OC after they wrote Marissa Cooper out of it? Hope not. Also, I like to consider myself as someone who isn't obsessed with looks, but... Matt Smith, 11th Doctor? Where's the quirkiness, the looks, a cool outfit? (Damn, that trenchcoat the 10th Doctor wore was so cool. I would totally wear one. If I wasn't so short, housebound & didn't live in a country that doesn't require trenchcoats!) I loved the 10th Doctor on sight. I had to take an episode or two to like the 9th Doctor, but he's still a bit too serious & military-ish for my liking. Just... I don't know if it's because I'm attached to the 10th Doctor that I hate the 11th, or it's actually because I hate the 11th. Just because. *mildly confused*

Skins. Yes, again.
At least there's still Skins. Thankfully. I finally watched episode 4 last night; it took me trying at least 10 links, none of them working past the 6 minute mark, but I tried the first link again. It worked, though it took several hours to load. I pause, then wait for the whole episode (or most of it) to load, then watch. I'm interested as to what will happen with series 5 & 6... Will they use Freddie's younger sister, & introduce her friends? The way Effy was introduced in series 1 & 2, only to become a lead character in series 3 & 4? Can't wait until series 4 comes out on DVD, or airs in Australia. It'll be in much better quality than online streaming!!

And, finally, back to ME/CFS...
I know that if I can sleep for more than an hour at a time & get 5+ hours' of sleep per night, my memory will improve, as will my ability to learn new things. This will, of course, be of immense help for my Methods exams at the end of the year. Either way, I hope to manage something around a 37 (scaled) & to do better in my Humanities & Literature subjects next year. Maybe a 40 for Lit, a 38 for Legal Studies? It all depends on my illness. I know I could get all marks in the 40's if I wasn't sick. There's no question about that. I'm sick of my life being defined & dictated by this illness that so many people see as fake. Right now, it's the lack of sleep & pain that is driving me insane. I could cope with one or the other, but they go hand-in-hand. It makes for fun times. I hope I start to improve soon. I don't know if I can get any worse, & I do not want to find out.

My room

2010-02-17T01:09:00.001+11:00

So, I'm going to try a sort of new lay-out for my posts...

An introduction: my room...

I spend a lot of time in my room. A lot of time not sleeping, watching DVDs, going on Facebook, Twitter, etc. I'm also a messy person (not my locker, or when it comes to books, organisation, just my room) which annoys the hell out of my mum. So I did a massive room clean up, staged over several weeks. I cleared out my wardrobe. Filled a whole garbage bag of clothes to take to the Salvos, ones that I'd outgrown, never really worn, or just never fitted right. Also, my old school dresses I had been keeping for last year's muck up day. You get all your friends to sign your dress, you keep it forever. Figures I'd be too sick for muck up day!

Posters...
My mum took a Killers poster I got for myself at Christmas, plus a Chris Grant testimonial poster (he's an AFL player) that I've had for... Well, months and months. Since I got my Western Bulldogs jumper last March/April. And The Killers poster is now near my bed, the Chris Grant one is above my desk shelf. They look great, but it meant I had to part with some of the print outs of Oasis and The Killers. When I say some, I mean, it covered half a wall. And I had to get rid of half that amount. I really want an Oasis poster now. Really. That would be epic. But I'm running out of wall space!! I might post pictures sometime, it's a matter of having some energy (or, just not be using next week's energy) getting the camera, taking the pictures, uploading to my laptop and then this blog. So, it may be a while.

Textbooks, and my desk...
My desk is also the neatest it's been since mum cleared it for school last year. (And that lasted for all of a day. I just did my homework and tutoring at the dining room table. You can spread all your stuff out there much more easily.) I've got some of my soft toys lined up, I've organised the drawers, all my stationery, so only functioning items can be found... I don't think I'll be scribbling a pen furiously, in the hopes it'll work, for a long time! I also threw out a lot of my school books that were never going to be sold. Old editions, or folders I'd kept for no particular reason, plus a whole lot of (now) useless notes. Japanese ones from Year 7. Idk why I was keeping those! But it's freed up a lot of space for the huge amount of study materials, books, folders, exercise books, etc. (read: crap) that comes with Year 12. I've kept all my German stuff, though. Right from Year 9. I still plan to study it at uni.

An epic tale - in a new, shiny (precious) hardcover edition:
I also put my new copy of LOTR on my desk. The books, not the movies. (God, I do read!! I have 3 bookshelves in my room, some of them double-stacked with books, and collapsing from the weight!) They're lovely, hardcover editions, divided into the 3 'books', with illustrations by Alan Lee, and they come in a box-cover-thing, and, yes, it cost $135 and I had to order it in especially, but it is SO WORTH IT. My copy (I got it when I was 7) is all-in-one, soft-cover, but with a particularly awesome drawing of Gandalf the Grey on the cover. I'm still keeping that one, for sentimental value. And I'm thinking about getting the same edition of 'The Hobbit' - hardcover, with illustrations, for my birthday. Anyway, these books will last for a long time, and there are just some books that have editions you HAVE to have.

Impulse shopping: some editions are forever...
My mum's copy of 'To Kill A Mockingbird' is so cute. It's a Penguin, and the cover is in 3 colours, made to look like it's a child's writing, done in crayon. And there's a dead mockingbird on the cover (you know, lying on it's back) plus a list of the accolades the book's won. It is lovely, and it's not hardcover, so it will fall apart one day. But I'm always looking at 'To Kill A Mockingbird' in bookstores, in the hopes I'll find one like it. Now, the 'Tomorrow' series, by John Marsden. I bought every book as soon as it was released. And I started doing that when I was 9. Being 9, I didn't have a lot of money, or the foresight to buy hardcover. So I'm hoping for a boxset, because there's, like, 7 books, plus a 3 book follow-on series. Although the last 4 I have ARE hardcover, because that's all they were selling. Irritating.

Longing for stability...
I'm going to the gym today, (well, it's early morning, I'm not going until afternoon) I'm starting to see a personal trainer again. Starting at basics, obviously, I hope to build up enough strength to be able to (easily) carry my schoolbag, books & laptop next year, climb the ridiculous amount of stairs at school to get to classes, sign in, or go the library, and maybe be library captain again. Plus be able to study and do well in my subjects. Never mind celebrating my 20th birthday (I'll be old!) or going to the movies, just basic things like that. Things I used to manage in Year 11. But stability is one thing you can never have with this illness, and at some point, I need to realise that. I'm still feeling really achey, exhausted and sick. The 'flu-like' symptoms are getting worse, and I don't like it one bit! Plus my insomnia is here to keep me company, as always. I hope I can start to improve. Because I'm scared of what will happen if I get any worse.

Okay, so let me know what you think of the titles, and any ideas you've got for layout or readability. =)

Time to stress!

2010-02-08T15:39:00.001+11:00

Yep, it's officially time to stress. Distance ed is starting really soon. So is maths tutoring. And my mum and I are in the middle of filling out the distance education enrolment forms. Just got to figure out how to phrase my reasons for choosing distance ed. Obviously disability, but I need to convey the severity.

I've got my textbooks, folders, exercise books and necessary stationery. It's all labelled, too! (I must remember to buy spare batteries for my calculator...) Also arranged tutoring for the soonest date I could - 21/02; this Sunday is Chinese New Year, so the following one is best for my tutor. It's at 11am, but thankfully at home, not at the uni. I'd die if I had to get up at 10am, eat, dress, pack my books/meds/money AND get to the uni! So I guess I can get up at around 10.30, have something that won't induce severe nausea, but will keep me going for 2.5hrs, and get dressed. I hope it won't be hot, though. The uni has better a/c than my house.

I really miss school. Getting up a few days a week, putting on my uniform, and seeing kids. I know I'm too sick for it, but I still feel envious and upset when I see kids (even my brother) coming home from school, or leaving in the mornings.... I'm back to doing a bit of weight-bearing exercise, because I'll need stronger arms to carry my bag to school next year, and my books/laptop to classes. I'm thinking about seeing a personal trainer again, to get out of the house, have some structure, and hopefully improve my level of tolerance for activity and exercise related pain.

It's summery weather again, there were two days where it was less than 25*c, but now it's going to be 31*c+ for most of the week. Today is 35*c, I think. My sleep is totally screwed. I slept from 2am-5am, then got 20mins rest/sleep between 6am and 7.30am. I stayed up until nearly 10am, and had breakfast, then went back to bed, and managed to sleep again. 11am-1pm. If someone could just treat my sleep, they'd be treating my pain, nausea, and so many of my other symptoms. Right now I'm not coping with this amount of sleep. I can barely listen to music anymore, I can't go on Facebook chat, and watching DVDs is about all I can do. Interrupted sleep is killing me. I'd rather 4hrs' straight sleep a night than 8hrs' waking every 15mins.

I hope I meet new friends next year, and I really hope I can get out of the house enough this year. I've never liked shopping, but even buying CDs, or looking at sales is infinitely better than being house-bound. I guess it's back to watching Skins now. I'm in the middle of series 3. =)

Skins, The OC, and an ill teenager's escapism

2010-02-06T02:59:00.000+11:00

I really love the tv show Skins. It airs on SBS and FOX8 in Australia, on free-to-air and Foxtel respectively. (It's always delayed by months, though, last year it aired here 6 months after it's release in the UK. Fail.) I love it because it's the closest I will ever get to being a teenager, it's funny, has great music, and is more realistic than The OC (which is what I used to watch when I realised I'd never be a teenager.) On Tuesday I bought series 1, 2, and 3 on DVD, and, suprisingly they were only $30 each! I've seen every episode in series 1 and 2 at least twice, but I still love it. I'm still waiting for episode 2, series 4 of Skins to load. Streaming is taking FOREVER, and Megavideo works best, but I can't find any links for episode 2 there yet. I've watched about 12mins of it so far, and I really like it.

I wish I was well enough to have close friends, or more friends who'd stand by me with my illness. But I don't. That's ME/CFS for you; it drives almost everyone away, even your family and closest friends.

When I was 13, and watching The OC, I'd feel happy, and hope that one day I could go to parties (when I'd be better, at 15, like my doctor said) or go shopping with my friends, or even try drinking. Or have a boyfriend. By the time I hit 17, and had bought the first season on DVD, I didn't watch it for those reasons. I had to escape. From home, from being stuck in my room, from getting B+'s and A's when I could've been doing so much better, if only I could study. Then it'd depress me sometimes, because everyone was SO rich and SO happy, and I just wanted a tv show that was a bit more realistic. So I'd watch it to escape, but fume inside at times, too.

It's frustrating for me that my school has taken away admin privileges when they reimaged my laptop - so I can't download any programs or update anything (iTunes, Flash player, etc.) and that our PC is so slow it's going to die soon. Opening Microsoft Word can take 10mins and risk freezing or crashing the PC, and opening iTunes now takes up to 35mins, then waiting 10mins to open the iTunes Store, or a tab like 'Music' or 'Movies'. And, of course, iTunes periodically freezing. I can't use iTunes on my laptop because it's such an old edition, plus I can't download songs or update the edition. So I'm going to take my laptop into school soon, and ask for admin privileges to be reinstated, or for them to enable program updates with my username. Then I won't have to go near that damn PC unless I have to print.

I got more Ondansetron from my specialist, I'm limiting the useage to a few times each month, which is why I only got a script for another 10 wafers. I also got Panadeine Forte for pain (doesn't do much, but I can sit for a little longer when I take it) and will ask for something stronger next time. My specialist thinks all the stress at home and about school can't be good for me, but that there is very little that can be done about it. She's also writing the letter to the distance education region about my application on medical grounds, and thinks that a year off, provided I don't stress about my marks, will benefit me. But I no longer trust doctors!

I went to Officeworks on Thursday, and bought two blue exercise books, one small, one large. One for notes and the other for working out, etc, respectively. I'm reusing 3-ring binders/folders that were a gift from Christmas 2005 (they're from Borders, and are transparent, with colourful translucent butterflies covering them) for this year, for distance education homework, work/notes, SACs, Unit 3 work and Unit 4 work. I also bought a blue display book for notes and working out from my tutoring sessions, plus cheatsheets from each year of Methods, and new ones for this year. And I got butterfly labels for my folders and display books. They don't match, but go together quite nicely. I'll feel completely organised once I've covered the labels on the folders, so they don't get torn, and have bought and labelled my textbooks. Then I'll organise tutoring for an evening during the week, get my mum to fill in the enrolment forms, and I'll be set. I just hope I can get through this year.

That's about it; I'm kind of sleepy, and my brain is starting to shut down. (More than usual) Thanks for reading, and if you've got any ideas, feedback, or tips on how to make my blog look less boring, I'd love to hear them. I'm rather new to this blogging thing.

Off neuropathic pain meds, and it's back to school!! (But not for me.)

2010-01-29T03:45:00.000+11:00

Hi everyone!! (Or the few people who read, or stumble upon this blog!)

I'm feeling better; I'm off my neuropathic pain medication, and I've lost 2 kilos, (although I really haven't been eating much for the past 3 weeks) my neck pain is gone, and my back pain is just the usual lower back pain that hits whenever I don't sleep enough, or do too much, and makes me really irritable and have to lie down with a heat pack, wishing I could have morphine again. Oh, and I'm thinking clearer, less mood swings, irritability... (I'm usually in a hideous mood, particularly at my younger, highly fit, active, loud, happy younger brother.) Oh, that sounded bitchy.

Wait a sec, let me try to explain:

I don't know if you can understand this, but, when I see healthy people, people who can run around, or go to school every day, have sleepovers with friends, study whenever they want, and SLEEP, I get really upset and angry. Envious, too, obviously, because they have what I can't: health, happiness, fun, quality of life, constantly achieving their best academically. It's like when my mum is watching a movie, and sees someone running, or is at a footy match, and thinks "I can't ever do that again. I can't even do light weights at the gym. I've injured my shoulder permanently, and I have degenerative arthritis."

You can't appreciate something so simple like getting out of bed, showering, sleeping, or exercising until you lose the ability to do so.

There's a drug I was given as an inpatient in January last year, for my severe nausea. (They didn't want me to require IV hydration, 'cause I couldn't move my vision was so blurred, I was disoriented, and couldn't turn my head, eat at all or drink enough because of nausea.) It was called Ondansetron. I got given 10 when I was discharged, but here, you have to be on chemotherapy to get it; it's a restricted drug. But I took one on Australia Day. I spent 6 hours at a bbq, indoors, sitting at a table, managing to eat and drink, tolerate light, noise and people, and enjoy myself. All on 5 hours of broken sleep.
It improves my tolerance for stimuli, my feelings of disorientation, blurred vision, nausea and headaches that painkillers just won't kill. But I can't get it again. It's supposed to help with ME/CFS symptoms, and, from my understanding, overseas, it's only the cost that is prohibitive, not the government's annoying restrictions. So now I have 9 tablets to last the rest of my life.

I'm fucked.

Unless I can research with my specialist to find a type that isn't restricted, or get a private script. It means the difference between missing a day of school, or a test, or SAC, and getting an A or B on that SAC or test. It meant that with my meds for Idiopathic Hypersomnolence combined with Ondansetron, I could be awake, alert, and able to socialise, eat, drink, and study.

Sometimes I wish Australia were more lax with their medication restrictions. For instance: Modafinil is on PBS if you have Narcolepsy, but not if you have Idiopathic Hypersomnolence. The difference between these illnesses? Narcolepsy, you can't control when you sleep, get excessive daytime sleepiness, with REM sleep. Idiopathic Hypersomnolence, you can't control when you sleep, get excessive daytime sleepiness, without REM sleep. Sure, HUGE difference. NOT.

Well, I've got to fill in the enrolment forms for distance education with my mum at some stage, and will go to Officeworks and Smiggle to stock up on pens, pencils, scented pens (to tempt me into study) looseleaf, folders, and more! Then I'll get my textbooks, organise a tutoring session, probably for mid-February, and hope that my sleep and panic attacks sort themselves out before distance education starts. I love stationary shopping. It's almost like that if all my subjects are colour co-ordinated, then I'll be organised and get good marks. But, really, it's like semi-procrastination and a fun shopping trip!! Smiggle is awesome, though. Seriously. I can't wait for stationary shopping.

I'm in a lot more pain at the moment, but my usual pain. So today, my constant companions were a heat pack, and a quilt. I watched some Cold Case, Law & Order: SVU, the rest of the 30 Rock marathon I'd taped and Family Guy. Plus an episode of the German News, 'cause I felt I'd been sick and not studying. Pity there aren't algebra programmes on tv or something! Then I could "study" Methods while lying on the couch, feeling awful. I hope I'm not too far behind, and that I can cope this year.

Hope you're well, readers. =) Comment if you feel so inclined.

formspring.me

2010-01-29T03:13:00.001+11:00

What was the happiest moment in your life?

Since I was 8 when my life started to very gradually disintegrate...

I'd say The Killers' concert in November of 2007. It's the only concert (apart from classical) I've attended, ever. I was able to stand the whole time, clap, cheer and sing. I went with a great friend, and got out of the house, for a reason besides study.

I came home experiencing an emotion I'd forgotten - happiness. I described how I was feeling: exhausted, but on some kind of high, and I couldn't feel the pain, but I knew I'd miss school the next day. And I didn't care. I was excited, and couldn't stop smiling. My mum said: "That's happiness, Alex." She looked so happy, too, but a little sad. Maybe you're supposed to remember what happiness is like.

Ask me something!

formspring.me

2010-01-29T02:48:00.001+11:00

What 3 things do you think will become obsolete in the next ten years?

I'm guessing.

iPods: I think the iPhone will become more advanced, people will want all-in-one, compact devices, and smart phones with awesome music capabilities could supersede simple iPods/MP3 players.

MP3: I read there's a new music format, it's called MusicDNA or something, and when you buy a song, it'll update every time you connect to the net with upcoming albums, gigs, and gossip about the band you're listening to. I mean, that would be .awesome. Right?

I don't know about the third.

With the Kindle... Books: no matter what people say, I don't think books will ever become obsolete. There's something concrete, reassuring, and wonderful about opening a book - for the first time, with the "new book smell", or rereading a classic, a well loved edition that's worn at the edges. A book is something tangible. Books shouldn't be downloaded like one would an app or a song.

Integration of appliances: with so many things becoming integrated; televisions with internet access, HD set top boxes built into wide-screen televisions, (fridges with televisions!!) I think that some aspects may become obsolete... Maybe the computer will replace the tv, or vice versa, or things will just link up so much that there isn't a clear line anymore.

I think that's the future: the blurring of lines. Lines between types of technology, between work and home lives, all sorts of things.

Ask me something!

'Girlfriend' magazine article and raising awareness!

2010-01-22T04:03:00.001+11:00

Hey!

From those of you in Australia and NZ (I think) you'd be able to buy Girlfriend. I read it usually when I'm in hospital, or am too sick to process a book. Anyway, I got an article published! They sent my mum a list of questions, and she wrote down my answers, then put them on the pc and emailed them. (I was too sick to use a computer at that stage last year.) True to their word, they've published my interview/story in this month's edition of the magazine.
The title is:
"I'm bullied because I'm sick:
Alex, 13, wants people to understand her illness and not attack her for it."

Yeah, they fudged my age - maybe 'cause it looks bad if I've been sick since age 8, and am 18. It says I'm 13, and the cut out everything related to Year 12, 'cause not many 13 year olds are in Year 12! Still, it's much better than the newspaper article; twisting my words, misinterpreting, and generally seeking a sob story. (No, I do NOT like tabloid journalism, but it's only because of that article that I got extra writing time for my German exams last year.) If you're interested, buy a copy... They don't have it online. It really shows how severe ME/CFS can be, although not like my Twitter friend, @Stroopwaffle. She's got amazing strength.

My mum is thinking of writing a book about me, how it's affected me, and my family, and how misunderstood and maligned ME/CFS sufferers are. I think it's great, and there is a market out there. People who are incredibly disabled do not want to hear how an AFL footballer tried ice baths to "cure" him. Because then every man and his dog will tell every ME/CFS sufferer and ice bath will "cure" them. Never mind that it didn't work for the footballer!!

My sleep is screwed again. I waited for my brother to go to sleep 'til quarter to one in the morning, then tried to sleep until 2am. It's nearly 4am and I finished watching 'The Two Towers', started 'The Return Of The King' and have tweeted, gone on Facebook, read a blog, and am writing this before I attempt sleep sometime after 4am.

Our neighbours are having renovations. They start at 7.45am with LOUD, NOISY hammering and sawing, and then stop for the day at 1pm or 2pm. So, I can either eradicate any chance of sleep at night, and sleep from 2pm - 8pm, or, suffer with a headache, nausea, dizziness and exhaustion from being woken too early, sleep deprived, and exhausted. I don't know how much longer I can cope. I am just happy they don't DISTURB THE WHOLE NEIGHBOURHOOD on weekends. My parents may go over and see them, to ask if they could start at 8:30am/9am, or ask how much longer they'll torture me. Although it probs won't be phrased like that.

I'm pleased with myself. I've got myself published online, (the newspaper article was published & circulated online) in a national paper, and in a national/international magazine. I just want people to accept ME/CFS and I have to raise awareness. Somehow.

Goodnight, and I hope for the sake of my sanity, I sleep and am not woken by obnoxiously loud building works!

Blurred vision. It's not fun.

2010-01-20T21:16:00.000+11:00

I've only recently got blurred vision as a symptom. Once in January, during my hospital stay, I couldn't see people's faces, watch tv, read, or do anything, really except talk to the kids in my ward, who were blurs. The doctors weren't concerned until I mentioned it for the 100th time, then they looked at my eyes. Couldn't see anything wrong. Turns out, it's a symptom of ME/CFS. Funny, no doctors knew about it.
Anyway, it's back again. It's a side effect of the pain medication along with fatigue, sleepiness, (not getting that, unfortunately) confusion, blurred or double vision, changes in weight, nausea, back pain, muscle pain, dizziness, unsteadiness, disorientation, forgetfulness, headache, sore throat, fever/chills and a runny nose. I've had all of those except the sleepiness, so I'll probably go off it. The first time I was on it, it was just weight gain and the blurred vision for one day, and then another half day. Now, it's two days running of blurred vision, with brief moments of reprieve, and I don't think a medication that causes or can worsen symptoms I've already got is a brilliant idea. But, hey, at least I didn't get jaundice or hallucinations, right?

It sucks, because I can't use my laptop, I can't read, all I can do is watch tv, and even that's blurry. If I miss dialogue, I have to rewind it, because I can't read the damn subtitles. And I tried my reading glasses. (Yes, I needed them from age 9 - 12.) They didn't help, and they always gave me headaches, the whole three years.

I'm really stressed about how I'll cope with Methods CAS this year. And what if the blurred vision happens on a day when I have tutoring, or a test, or worst of all, an exam? I won't be able to see the exam!! At least I can tell my tutor I'm sick, and apologise like hell, but that doesn't work with Year 12. I'm so exhausted, and my doctor thought I'd be doing 3 subjects this year, and full time uni next year, plus a part time job, when I saw her in November last year. No one knows what to do, and very few people will admit it. I'm just so sick of never knowing what will happen in the next hour, day, month or year. It's the unpredictability that's awful.

Anyway, I don't want to push my eyesight, not while it's still here, so that's all for the moment, I guess. Anyone else get blurred vision with ME/CFS, or know how to help it? 'Cause "time" isn't the most convenient or practical answer. Also, if there are any typos, it's the eyesight. Not used to the laptop.

'Avatar' and shopping!

2010-01-16T03:01:00.000+11:00

Yesterday I finally got out of the house and went to see 'Avatar' at the director's suite. It was pretty good, but they could've cut out 1/3 of the film; essentially the action/fighting/marines, and still had a great movie. I got really sleepy in the middle, but I actually managed to stay awake. And I got up at 1pm, although I wasn't able to think straight or walk properly until 1.50pm. I was that exhausted and sleepy.

After the film I went to Myer and bought two pairs of tracksuit pants and two t-shirts. Bonds makes really comfortable clothing, but it's a little overpriced at Myer, in my opinion. (Although I am fairly tight with money when it comes to buying myself stuff. With gifts for others; I splurge, or go all out on making something lovely. Like a quilt I hand-sewed for my grandmother.) Luckily, I wasn't paying. Mum was! Unfortunately, there was only one pair of the Bonds tracksuit pants in my size... Loads of 12's and 14's in dark grey, grey and black, but only one 10. It was in black, which is cool, 'cause black matches basically everything. The other pair were Urbane, and they were still really comfortable, and both looked good. I got a pink t-shirt and an aqua one.

I then cleared out my wardrobe when I got home. Loads of my t-shirts are old, with the hems coming undone or the patterns are totally faded. I'm still keeping two of my favourite t-shirts (one is a yellow Paul Frank, and the other is a blue Billabong one) until I can go to the Bonds outlet and get some more, hopefully in the afternoon. The old t-shirts are just for wearing around the house. I also decided to get rid of my old school dresses; I was keeping them for the Class of '09 to sign on the last day, but as I was too sick to go for that, there was no point. Just taking up space.

The weirdest thing is that I've lost weight since I was last weighed. (Late October.) But my jeans still don't fit properly. It's seriously pissing me off. I know my new neuropathic pain med causes bloating and weight gain and irritability and mood swings and a million other things I haven't experienced yet, plus ME/CFS can cause bloating, so I'd say that's why my jeans only just fit. Yeah... On the plus side, I'm still a size 10 or XS. WOOT!!!

I really hate the way I have basically every symptom:

insomnia, inability to fall asleep and stay asleep, restless legs,
pain (especially in the muscles and/or joints, often migratory)
blurred vision
fevers, chills, aches & pains
confusion, 'mental fog'
memory loss
difficulties concentrating
hypersensitivity to stimuli
dizziness, blacking out
weakness
sore throats
severe headaches and/or migraines
thermostatic intolerance (I can't maintain a constant body temperature)
cold extremities (even in summer)
flushes, sweating, shivering, intolerance of extreme temperatures
worsening of symptoms with stress and exertion
anxiety/panic attacks
weight fluctuation
flu-like feelings and general malaise
exhaustion
unrefreshing sleep
new sensitivities or allergies to food, chemicals or medications
tender lymph glands
difficulty recalling information, making decisions, inability to multi-task
disorientation, blurred vision and/or problems focusing vision
ringing in the ears
'zoning out' (Being so tired that one's body and mind shut down. One has no control over this.)
post-exertional malaise (Most people feel better after exercise. ME/CFS patients do not. It can take days, weeks, months or even years to recover from exertion, and the onset of malaise is delayed.)

There are many more specific ones that I could outline, but I think this list will give you an idea of what many ME/CFS patients suffer through every day of their lives, with no respite. The discovery of the retrovirus XMRV has given us hope, however, it will be a long time before there is anything close to a cure, and even longer before Australia recognises the existence of this retrovirus, it's proven link to ME/CFS, and the potential to treat XMRV positive ME/CFS patients with anti-retrovirals until a better, targeted treatment is found. And, hopefully, a cure.

I didn't mean to turn this into another post about ME/CFS, but I looked at my blog's title, and thought: "Well, the readers can't say they weren't warned!!

Moving on, are there any good books or CD's you'd recommend? I got a $50 Borders voucher at Christmas, and I plan to spend it sometime soon. I'm planning on buying 'Bruno', some stationary (they have such cute stationary there) and use whatever is left over on books and/or CD's. I'm lucky that I have pretty much the same taste as my mum when it comes to books, so whatever she buys, I read after. I haven't been well enough to buy myself a book in over 2 years! And, while I'm talking about stationary, Smiggle is awesome. They have scented pens, pencils, erasers, pencil cases in all shapes, styles and colours, plus folders, exercise books, staplers, scissors, highlighters and heaps more. I have a 'craver saver' card; every time you spend $10 (I think) or more you get a stamp. And once you get to the 14th square, you get a free gift. It'd better be good!

When I do my stationary shopping in January, before school starts, I colour code each subject, buy pens, pencils, etc. in nice co-ordinated colours, and hope that this organisation will somehow translate into brilliant grades. For instance, German was green: green folder, exercise book, Post-it notes. Methods is blue: blue folder for school, blue folder for tutoring, blue exercise book for school/tutoring, small blue exercise book for notes and working out. It's not OCD, all my friends do it, too. It's something about Year 11 & 12. You feel like your whole life will be reduced to a number, (your ENTER) so you take control and organise whatever you can. Plus the stationary section in Officeworks, and all of Smiggle is generally relaxing.

Well, that's it from me for now, it's about 3am. Comment if you want, I love to hear positive feedback. Take care of yourselves. =)

Cool change, finally.

2010-01-13T03:44:00.000+11:00

The cool change came through sometime in the afternoon on Tuesday (I was asleep, but my room was still boiling) and I believe it actually rained/drizzled. So it went from being 40*c to the low 20s by afternoon. My room is cool now, and I'm looking forward to a week of temperatures in the mid to high 20s.

Summer is only okay when it's school, and I never have to think about what to wear. But not if it's 35*c or higher; then I just can't study or concentrate. If I do distance education this year, I'll miss the uniform (not the hat in summer, or the tie in winter) and not having to think about what to wear. The only choice I make in the morning before school is how to do my hair. And there isn't a lot to do now it's this short (not my first option, but I was too tired to have it any longer, and the school has a rule about tying up your hair if it shoulder length or longer.) I'll miss seeing people, too, but I don't really know anyone that well; all of my friends graduated last year. It'll be worse next year, I don't really know any of the girls who'll be Class of 2011.

I will get to go out on weekends, apart from tutoring... I've got a membership for the footy again, and am determined to go every week, even if it kills me, or I have to rearrange tutoring. And I can see friends, if I'm able to. That's always the problem, I think of things I'd like to do, or enjoy, but can't physically do. (Or mentally. Like study. It's beyond me at the moment, I'm that sleep deprived.)

I just need to get through the next two years, then I can rest. And figure out what the hell I'm meant to do with my screwed up life. I mean, normal people don't turn 20 in their final year of high school. If I could just do my Year 12 faster, I'd have more time for everything. But high school is wasting so much of my life. If I could study, or get A+'s in my subjects, or go out with friends, or celebrate my birthdays, it wouldn't be so much of a waste. But I basically get up, go to school, come home, lie down, and have tutoring on my days off. And am frequently unable to complete homework or study. (How I managed to get an A for semester 1 of German, and a B for semester 2 is beyond me. I didn't study from March onwards!) But getting marks like that gives me a little hope for getting a decent ENTER score. I don't think I can actually fail. (I mean, some people do, but if I keep this up in all my subjects, I'll be okay.)

Anyway, it's nearly 3.45am, so I should try and sleep. Plus I feel my early-morning-haven't-slept-yet headache starting. Leave a comment if you've read something and you want to respond to it... Even study tips for Maths Methods, or other things I could write about... Something you want to know more about.... Yeah. It was really cool discovering more than 1 person actually reads this. =)

Summer

2010-01-12T02:43:00.000+11:00

So, it's summer. Which is generally okay with me, except for the fact that I've been on holidays (sort of) since, like, September. (Year 12's finish early so they can study for exams. Nice if you CAN study!!) And when I'm stressed, I eat. And when I can't exercise, and am on a new neuropathic pain medication that makes you gain weight, it's not very convenient.

I was actually told by the doctor at the pain clinic that "Weight gain won't be a problem, because you'll be pain free and able to exercise." Well, it didn't help my pain. I tried it from late October til December, with no effect, except I gained some weight. Then, after being told I'd get an appointment in the first week of December, I got one in the first week of January. (Probably because ME/CFS pain isn't as important or "real" as other pain. That's my theory.) They put me back on the pain medication, at a higher dose, all at night, because, for the first time in my life, someone believed me (after my parents backing me up) when I said that sleep is the only thing that relieves and prevents pain. I slept well the first night; 5am - 2pm, and woke up feeling unrefreshed (like every other morning since I was 12 or 13) but awake, and alert, and less dead inside. Not happy, because nothing is ever guaranteed. I'm not dumb enough to organise to meet a friend the next day, because, I know I may not sleep like this again for years. And, wow, I really didn't sleep the next night, or the night after, or any night. I'm back to getting to sleep between 5.45am and 7am, usually around 6.30am. It's not pleasant, it's depressing, and I can't cope with it anymore.

Anyone who's had insomnia will know that broken sleep (ie. waking every 10 - 30mins, or every hour) isn't restful. You wake up feeling worse than you did when you finally got to sleep. Doctors try to tell me that broken sleep is just as good for you and as restful as sleep 8hrs straight. It's not. It's torture, as is being awake when everyone else is asleep, then being asleep or bedbound due to a combination of nausea, dizziness, weakness and disorientation while everyone else is awake.

I really need to get my sleep sorted for next year; I'll be doing two subjects, and actually going to school. This year, it looks like I'll be doing distance education and getting my maths tutor to come to my house once or twice a week. I'll be isolated, but able to work when I can, and sleep when I can. Although I have to go in to the centre (about 10mins away) for SACs, exams, and possibly tests. It's maths, so it can't possibly be as computer based as English. Right? I need to get a scaled score of around 38, and then hope I can manage a scaled 40+ in Lit and about 38 in Legal Studies... That means I get an ENTER around 86.75... I'd be very happy with that. I could apply to the uni I want under "family hardship" and "disabilities" which means they would:

a) Take into account statements from teachers & principal regarding my marks before I became this ill, and realise the ENTER I could've got if I were healthy
b) Read statements from my specialists about the extent my illness affects me
c) Then hopefully give me a place, and a CSP, and if very lucky, a form of scholarship, which is thousands per year (you get an allowance, last I heard)

If they don't offer me a place, then I guess I wouldn't be doing Arts, then Law, I'd just be doing Accounting. I could see myself being content with that. It wouldn't take as long, then I could get a lot further in my profession... I mean, as long as I make enough money to sustain a comfortable lifestyle, and am reasonably satisfied with my job, I would be happy. I'd be a hell of a lot happier if I were healthy, but that won't happen too soon.

I don't understand how pacing would work for me... How long am I meant to stay in bed before I have a reserve of energy? I have none; I'm working on negative amounts of energy just to get up and sit on the couch, and heat up food. Never mind washing my hair or making my bed. I haven't had any energy reserves since I was 13. My doctor sometimes says that exercise is great for my ME/CFS, other times she says "If all you can manage in a day is to have a shower and get dressed, or walk to the mailbox, that's your exercise." So, basically, she's totally undecided. It's very useful. NOT!! (Oh, God, it's been ages since I've watched 'Borat'... So funny.)

I plan to buy 'Bruno' (haven't seen it yet) when I manage to go to the movies to see 'Avatar', and spend my $50 Borders voucher. Ooh, and I want to go to Smiggle, too. And I need to return a drink bottle that leaks to a surf shop. Damn, that's, like, 3 trips to the shopping centre. I'm not big on shopping, but it gets me out of the house. But I refuse to go in a wheelchair. People stare, talk, point and make faces. Plus it's as tiring as walking, when you put up with that shit, and the pain is equally exhausting whether I walk or sit. Lying down is the least painful thing. =\

So, about 2.40am... Not sleepy, Facebook won't work, and I am SICK OF THIS HEAT!!! It was over 43*c today. And I had to go to the doctors' in the afternoon. They rang to remind me on Friday, but, being idiots, they left a message on the home phone. The messagebank doesn't work. I've told them this the other 3 times it's happened, and each time they said they deleted the number. After my mum rang to check when my next appointment was (in the morning, so I was obviously asleep) they said they'd deleted the number, and they'll only call my mobile in future. I guess I'll have to wait and see whether they actually call my mobile instead...

I wouldn't mind it snowing here, but it never has. Only if you go to the mountains. And mum's arthritis means we can't, and my doctor said I couldn't go on my school's ski camp when I was 14... All equipment provided, and everything, but I missed out. So, if it doesn't snow here, I won't be seeing snow for a long time. Just cold weather in winter (10*c - 17*c during the day) and awful weather in summer (heatwaves with days of 43*c - 45*c) O.o

Another year gone, another year wasted... And the need to speak up.

2010-01-08T04:10:00.000+11:00

It's been about 11 years since I first got Epstein-Barr, (Glandular Fever) and about 6 years since my diagnosis and since my ME/CFS completely tore apart my life. (It continues to do so.)

My doctors told me when I was 13 that I'd be healthy by the next year (Year 8.) They were wrong. I missed school that year, and was hospitalised once. Then they said I'd be healthy by Year 9. They were right, until I entered a "rehab" program. It was just horrific exercise day after day, even when I was dizzy and blacking out. It didn't matter to the physio, the hydrotherapist or the teacher. I was lied to; it was not a graduated exercise program, tailored to the needs of the individual. The other girl I was in with had a breakdown and had to repeat Year 11. I was in Year 9, and missed most of the remaining second semester. My school passed me based on my mid-year results, just as they passed me for Year 8 based on my Year 7 results. To quote my former principal "Alex could miss school until Year 11 and not have any problems." Yes, I could've, academically, but socially, I'd hate it.
Year 10 was okay, but I worsened again at the middle of the year, and only continued to study Year 11 Maths Methods. I was passed for other subjects based on my mid-years. The only constant from Year 9 was German. I rarely missed a class, and studied whenever I could. Straight A's or A+'s were the result, but they were getting harder for me to achieve as I got sicker. Year 11 was a good year. I did the minimum required: 4 subjects. German, Maths Methods CAS, English, Literature in semester 1, and History in semester 2.
I was all set to do 2 subjects in 2009, as half of my Year 12 until I saw a sleep clinician after a sleep study. I was diagnosed with Idiopathic Hypersomnolence, which meant I had excessive daytime sleepiness and needed a lot more sleep at night than the average person. However, the sleep clinician insisted I get up daily at 10am - which would be moved back to 8am, even on weekends, I was told, regardless of whether I'd slept at all. Seeing as some days I don't get to sleep until 7am, this is ridiculous. When I asked how I could get my required 10hrs sleep, I was told: "Go to bed early." I'm sorry, but it doesn't work that way. I've tried going to bed at 10pm. I lie there for hours, until 3am at the earliest. If I need to get up at 6.30am, I can cope. But this 10am deadline wrecked my sleeping pattern. I fell asleep later and later each day, and the sleep clinician refused to treat my headaches and nausea resulting from her ill planned regime. When she diagnosed me, she said that "Despite your CFS, I can cure you. You'll be able to go to parties, and drink, and graduate this year." We kept asking if it was certain, and we were told it was. I rang my school, told my father (my mother took me to this appointment) and was really excited. Until I got worse. And worse. But we were told I'd get worse, then improve incredibly. At the next appointment, she denied ever saying this. Then my mother and I pointed out there were two adults who heard this, (myself and my mother) to which the sleep clinician replied: "Well, we could talk about this all day, but I don't want to." Translation: "I'm lying, but can't admit it because I'm liable for false or irresponsible prognoses." Plus the dosage of Modafinil was causing incredible dizziness and disorientation - I'd missed a week of school, and a SAC. I dropped English, and the sleep clinician wouldn't help; my dose couldn't be decreased, there were no other medications, and I can't die if I'm only getting 2hrs' broken sleep per night. Apparently. In short, the psychological impact of this, plus the exhaustion from the side effects caused a crash. By August, I could barely make it to class for my only subject: German.
And I continue to get worse. I'm no longer seeing that sleep clinician; I gave up. Someone who refuses to answer questions like: "Are there side effects?" or "How do I survive on 2hrs' sleep when I need 10hrs?" in verbal and written form is just impossible to deal with. And exhausting. I don't need the stress and exhaustion.

Anyway, Wednesday was my first day out of bed since Boxing Day, (I went to see Sherlock Holmes, and bought a few tops at Jay Jays) and that was only to go to a pain clinic appointment. It's a total waste of time unless the Gabapentin actually works at this higher dose. For it to work, it has to make me sleep, because sleep is the only thing that eases or prevents pain. And until Thursday night (morning, really) I'd been going to sleep at 7am or later, and unable to get out of bed until 5pm. But I took the Gabapentin, and slept from 5am - 2pm on Thursday, and actually felt awake and able to move that afternoon.

It's about 4.15am on Friday now, and I'm hoping that the Gabapentin will work again, and that it wasn't a one off. People take sleep for granted. And being able to get out of bed. Until you can't sleep, or get out of bed, you will take these things for granted. I'm not lazy. No, lying there and pretending I'm asleep will not trick my body into sleeping. ME/CFS is most definitely not in my head, not caused by mass hysteria, and I am not faking it for attention. So pretending I'm healthy will not mean I'm healthy, and can do "normal" things. It's insulting when people suggest that. But if you mean well when you suggest eating more red meat, or trying not to stress about Year 12, I'll try not to explain for the millionth time about ME/CFS. Sometimes it's easier to say, "Yeah, I'll try that." or "Maybe, I don't know, though." rather than explaining, contradicting, and making the person feel helpless/useless. But that's what it's like, if you're close to someone who's got ME/CFS. You don't know what to do, you don't know how to help, and you feel awful that this person is suffering doubly; with the illness, and the discrimination, hatred and disbelief/ignorance of nearly everyone they meet.

I'm still getting worse. But when I sleep well, (that can mean 3hrs' unbroken sleep; that was what enabled me to go out on Boxing Day) I feel so much better. The nausea fades, I'm not as dizzy or weak, I can think straight, I'm less dead inside, and the pain is kept away for most or all of the day. I hope the Gabapentin works. I could do well in Maths Methods CAS this year if it does. I'm hoping for a score around 38. And it looks like I'll do it by Distance Education; less energy wasted on putting on a uniform, looking tidy, remembering my summer hat, lunch and my books. Less social contact, (who am I kidding, it'll be practically no social contact) but time to see my tutor more often, and maybe join a gym again, build up my strength. I did that in 2007/2008. Until I went into Year 11, it worked brilliantly. But the stress was so great that I had to quit. Maybe, if I sleep, I'll do well in Methods, and be able to build up some strength.

I could do much better in every subject if I were healthy. But that's stupid. I'm not healthy, and there's nothing that anyone can do to help me. A friend suggested my parents take me overseas to find treatments. That's all very well if you're rich, and have that kind of disposable income. I'm not. We're not. And we have no family support, which I should be used to, but I never will be. People shouldn't be denied sympathy or help just because they "don't look sick." My grandmother said that about me. My well educated aunt, who is getting her Ph.D suggested it was mass hysteria, and my other aunt said "Oh, that's like when I clean the house, and cook dinner, and babysit my grandchildren, I'm tired then." It's not like that. Exercise will not make it better. It's not in my head. I am not crazy, faking it, or desperate for attention. Believe me, I'd rather be a normal teenager who gets yelled at for coming home after curfew, drunk.

I'd qualify for euthanasia if death were certain or imminent. I have no quality of life, and no reason to get up each day. But I do. Because I have to graduate from high school, and I have to go to uni and study arts, then law, unless I'm still really sick, then I'll do accounting. I have to. And it would mean so much to me if this illness had struck me when I had "pieces of paper" like a high school certificate AND a uni degree. It matters. I would have accomplished something. I'd have a reason to get out of bed; to get better, to be the best lawyer or accountant I could be. To help people. (Well, not really as an accountant, but Atticus Finch was the whole reason I wanted to be a lawyer. I decided when I was 9, and I finished "To Kill A Mockingbird." You can't read a book like that and not be changed.)

If I had some energy, I'd do more to promote awareness of ME/CFS, but with my life so completely screwed up, all I can do is write a blog that no one reads. And give talks at school, to which no one listens or understands the message. We need to speak up. And before it's too late.

"First they came for the Communists, and I didn't speak up, because I wasn't a Communist.
Then they came for the sick, the so-called incurables, and I didn't speak up, because I wasn't mentally ill.
Then they came for the Jews, and I didn't speak up, because I wasn't a Jew.
Then they came for me, and by that time there was no one left to speak up for me."
- Niemoller, 1946.
http://www.sophiaandme.org.uk/

I'm not saying I'm Jewish. I'm an atheist. I'm not saying having ME/CFS can be compared to the suffering of millions in the Holocaust. That's ridiculous. It's not possible. I'm saying that we need to speak up for those who do not have a voice. I read this at school, as part of a speech about ME/CFS awareness, and the girls assumed I was comparing my suffering to that of millions during the Holocaust. I don't know how anyone could misinterpret this poem in that way. The problem with ME/CFS is that it alienates people, and that the sufferers are often too exhausted by this debilitating illness to speak up, to rally supporters.

We need to be a voice for those who are without one.

MLIA... What is "average"?

2009-11-14T00:52:00.000+11:00

I've been spending a lot of time on MLIA. It makes me laugh. But it also makes me sad - these things that are "average" are actually monumental tasks for me. Even getting to school, or sitting an exam can take up half my days' spoons (http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf) so I wouldn't have any energy left to do or notice anything "average" or funny.

I know that stress makes ME/CFS worse. So, the stress of a German exam, being sicker than ever, and having to go through the hell known as Year 12 all over again next year is making it even worse. I haven't studied in a week. My exam is on Tuesday. I'm hoping I can "wing it", or that all the study and tutoring sessions this year will pay off, and make up for my total lack of study in the 6 weeks between my oral exam and written. I'm hoping. I'd pray, but I'm an atheist. Maybe I'll be able to do some exercises from Schaum's Grammar. Maybe I'll finally memorise the definite and indefinite articles and adjective endings, etc. Or maybe I'll be stuck in bed, trying to pretend I don't have an exam creeping up on me. That's the worst thing with this illness: you have no control - over when you sleep, what you can eat, where and when you can go out, what you do. Anything and everything is governed by this disability.

The first thing I'll do if I recover, is to go out with my friends. Then I'll study - without needing pain meds, or to lie down, or wonder about how many spoons this activity will cost me. I'll enjoy that the most - never having to worry about how many spoons something will cost me. I'll even go for a walk. And enjoy it. I've always hated sport and exercise, (except netball) but when you can't do something for years, your opinion changes. And I'll sleep. For more than 3 hours a night, without waking every 30-60 minutes.

The worst thing right now, is that no one knows what to do. My new pain medication has done nothing. My specialist waited 5 years before telling me:
a) there IS a pain clinic,
b) exercise isn't the only thing that exists for my pain,
and,
c) testing me for Fibromyalgia, and discovering that I might have it, but "it could be stress and insomnia causing the pain."

I'm 18. I should be getting ready for my final exam, then going to Schoolies and having fun. Instead, I'm having to deal with the fact that I'm being left behind, this isn't my final exam, and I'm too sick to go to Schoolies. I can't even drink, or get my Learner's permit, or go out. And I'm not sleeping. My specialist's advice: "Wait until after your exam, you'll probably sleep better when you're less stressed." WTF?! I WANT SLEEP NOW, WHEN I NEED IT, NOT WHEN I DON'T HAVE TO STUDY, FUNCTION, OR GO TO SCHOOL!!

FML. And My Life Is not Average.

Year 12.

2009-10-24T01:37:00.001+11:00

It's meant to be stressful, and it is. The bad news: I have another year of it to look forward to.

I guess I'm posting this at about 1.30am because I'm reading posts on Twitter and Facebook about the Valedictory dinner, and there was our last day, muck up day, and the Valedictory service earlier in the week. I was too sick for the last day and muck up day. But I couldn't go to the Valedictory service or dinner because I'm now only allowed to attend one. (ie. Class of '09 or Class of '10.)

I wouldn't be upset if I'd had more warning, but one month isn't enough. Not for bad news like that. And it was recommended that I attend next year's. I feel distanced from this year level, and I've never wanted it to be that way. Partly because I could only do one subject this year. Partly because I'm not really encouraged to participate in events like Valedictory. I can understand that people want me to fit in well with the Class of '10, but it doesn't mean I need to be left out of major events like these. I could have chosen to go this year. But what if I made more friends next year, and was healthy enough to enjoy it? And it would have impacted greatly on my study abilities.

I should have been able to choose to go to both, not be encouraged or directed to take another path.

I'm upset, but I'm not going to cry over this. It's not worth it. Yes, I'll be in the Class of '09 photo from the start of the year, but I'll be missing from everyone's Facebook albums. Adults don't always understand the importance of things like that. But when you're this sick, and you spend a lot of time on Facebook and the like, you notice your absence from key events. At least I'm allowed to attend both reunions - Class of '09 and '10.

I just wanted to see everyone, together, one last time.

Next year will be hard. Making friends, all over again. Being a year older than everyone else. Not knowing people's names. Maybe things will work out, and I'll find a place to fit in again. Maybe, this time next year, I will have had a brilliant time at Valedictory, and won't have any regrets, because there will be reunions. It's hard to know, even before you factor in severe ME/CFS.

That's what I fear and hate at the same time: the unknown.

First Post

2009-10-22T22:40:00.000+11:00

I'm new to all this...

Basically, I wanted somewhere to put my thoughts, without overloading my friends at school, or online. And to write about whatever happens, whether it's with exams, school, or my illness.

In case you haven't picked it up, I suffer from an illness called ME/CFS. I've had it for 10 years, and at the moment it's so bad that I am frequently bedridden, except for study, or attending classes. I'm studying German this year, and I have my second exam in November.

For those of you who don't know what ME/CFS is, or if you think it means I sleep a lot, and then I'm not tired anymore, I'll enlighten you.

I have a lot of pain. The only thing that relieved it was an injection of morphine; I was 9, and they thought I had cancer. It's a long story. I have muscular-skeletal pain, as well as excruciating back pain. It means that I sometimes collapse from the pain, or have to lie down for the day. It can leave me sobbing in bed, or I cry out because I can't take it anymore. A change in the weather, or standing/sitting for more than an hour can cause it, or simple over-exertion. (Things like getting out of bed, making breakfast, etc.)
I don't sleep much, and when I do, it is never refreshing. I sleep best during the day, but I can't, as I need to attend school, plus it isn't good for forming a sleep pattern. I get between 1-6 hours of broken sleep each night. Sometimes I wake every 15 or 30 minutes, other times every hour. Broken sleep is always worse than no sleep. Lack of sleep makes my pain and other symptoms much worse.
I am frequently dizzy, disorientated, and get severe headaches, which can turn into migraines. My specialists recommend that I don't catch public transport because of this.
My short term memory is badly affected. On bad days I forget my mobile number, basic words (couch, fridge, etc.) ends of sentences, what day it is, and what I'm meant to be doing. It can feel like dementia sometimes!
I'm exhausted all the time. Even sitting is exhausting, so I spend a lot of time lying down. It's hard, because rest makes the pain a bit better, and exercise makes it a thousand times worse!

Those are the main symptoms. I hope it gives you a better idea of what ME/CFS is actually like. I'm not looking for pity, I don't think any ME/CFS sufferers are. I'm looking for understanding and support. It's very difficult to come by, especially with the discrimination I face.

When my mum parks in the disabled parking space, so I can go and buy some new clothes, we usually encounter someone who accuses us of "using the parking space even though neither of us are disabled." No, I am not always in a wheelchair. You've got me there. But if I were to take the parking space over 100m away from the entrance, I could collapse. I may have to go straight home, because I am too exhausted and overwhelmed by pain, noise, and other stimuli. Or the nausea may be too severe. Just because the disabled parking spaces have a wheelchair symbol, does not mean that you have to be in a wheelchair to be disabled.

On the flip side, when I do have the courage and energy to venture outside in a wheelchair, I get stared at, with people turning around to point and talk (no, they're not tactful enough to whisper) about "what's wrong with the kid in the wheelchair?" I don't like drawing attention to myself. But I'm put in a position where I have to, just to get through each day. I don't shop at many stores. There are only a handful where people will treat me normally if I enter in a wheelchair, and will tell me what's popular. (I won't know, because I may have spent weeks in hospital, or at home.)

We just want to be accepted and understood. ME/CFS is a valid, debilitating disease, which can be fatal. Don't think that just because we look "healthy" or just "a bit pale", that we're not ill. Research and awareness needs to happen, and, unfortunately, most ME/CFS sufferers in Australia are too disabled to do so. I have tried, with an article in a state-wide newspaper, and, possibly, an article in 'Girlfriend' magazine. We all do what we can. And the Blue Ribbon Campaign for ME/CFS (BRC4ME) is a very important way of raising awareness.

Thanks for reading, and, no, not all the posts will be this dark and full-on. If I get to go to another concert, it'll be a lengthy post extolling the virtues of The Killers!!