I'm 16 years old and have had M.E. since I was five. I've never really been able to rely on myself enough to keep up a hobby or attend clubs, my health went up and down a lot. Sometimes I could attend school part-time, other times I missed out. I know I could have left with ten GCSEs, I have three. I wouldn't even be able to say that if it wasn't for my parents never giving up on me, fighting all the time until—after 9 years—I was given some home tuition.
I wrote this song in bed. The first sentence stuck in my head then the rest just tumbled out. It wasn't like making something up as it doesn't feel 'made up'. It's true. Every little sentence has meaning I didn't even think of as I was writing it out but it has helped me through so much since then, I feel calmer when I sing.
I can't even imagine being totally healthy, what that could do for my life. It's been so long. So if I got better, just like that, there are so many things I would do but the first thing? I'd go on an adventure. Somewhere a wheelchair couldn't go. I would run and breathe everything in. Then when I got home I would learn to play the guitar and go busking, I'd see if any local pubs wanted performers and I would sing and walk outside every weekend. Then in the week - and I know this would sound so ordinary and boring to most my age - I would work so hard. I'd finish all eight of the A level assignments I am behind on and it would be amazing because my head wouldn't hurt and I would be able to concentrate, I wouldn't cry because the words left my head as I read them because that wouldn't happen anymore. Then I would work on my project 'Visible Illness', representing what invisible pain and suffering does to people means so much to me but it is so hard to create things like that when I am suffering myself.
I could say so much more but I won't because it only gets me hoping and working out how I could make these things happen, then building up the amount I do only to crash again. I don't think I could handle that now! I'm not sure how far I have left to crash.