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!

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!

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

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!

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

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

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

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!

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!