Saturday, December 4, 2010


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.

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.

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! =)

Thursday, November 4, 2010

A distraction!

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

Monday, October 25, 2010


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


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.

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

Friday, October 15, 2010


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

Friday, October 1, 2010

I'm not dead... Yet!

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

Tuesday, September 7, 2010


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.

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

Sunday, August 29, 2010

Health update

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!

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?

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!

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

Monday, August 23, 2010

Our garden

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 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