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.