Saturday, November 14, 2009

MLIA... What is "average"?

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 ( 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,
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.

Saturday, October 24, 2009

Year 12.

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.

Thursday, October 22, 2009

First Post

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!!