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!!

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