A few people have asked me how I write anything at all (being so ill) and so I thought I’d explain.

How I wrote my ‘A Million Stories Untold’ essay was: I tried a new drug which gave me a very slight cognitive and physical improvement (I hadn't written a thing for the previous 5 years) and I was determined to do something with this rare opportunity. Plus I’d just got my snazzy new notebook computer, so I could finally write lying down. I started writing with my new-found brainpower and I went pretty well for about three days, working about 2 hours each day but then I kind of collapsed …but I knew if I didn’t keep going I'd never finish it and I felt that I absolutely HAD to, so I pushed and pushed, I would write for an hour then pass out for three. My eyes just burned.

I put myself through hell and by the end of it I was having these seizures where I would find myself in another room of the house with no memory of how I'd got there (though I think I was trying to get as far away as I could from some loud noises outside my room) and no idea how to get back to my bed, or of how to walk or of how to talk, I had to be led back to my bed by one of my parents. I had really full on tremors and nystagmus (which feels just horrible and should not have to be experienced by anyone) and vertigo throughout and often woke up in the last week unable to focus my eyes at all for hours on end. I don’t think I really spoke almost at all in the whole time I was writing, I was just focused on what I was writing the whole time.

I don’t really remember anything much of the time when I was writing except for the some of the really bad events but I do remember my brain was so bad that with all the cutting and pasting of text I did to put the article together I'd instantly forget what I'd cut and I'd have to paste it just to see.....about 10 times for each bit of text!!! Actually to a lesser degree that’s pretty normal for me these days but it was so frustrating because I had so much of it to do. It was just ridiculous. It took me so long to do every little thing, my memory just completely disappeared and I had only about a 3 second attention span it felt like. I rewrote each sentence many times to make it make sense and rewrote the structure of the thing many, many times so it'd make sense too, the writing didn't come easily at all like it used to... I had to get someone else to fix the hundreds of punctuation and grammar mistakes I’d made as well but then finally, after 2 long weeks, I was finished.

Then I went into an enormous crash, a sort of comatose state with daily fevers that made me pass out and still being mostly unable to speak for 4 WHOLE MONTHS afterward. Every symptom got worse and I also had/have new problems with breathing and with my heart which are terrifying to say the least. I am still now, 8 months later, unable to make phone calls other than to my doctor occasionally, and have barely left the house since either. (Though I was pretty much housebound and having some big phone/speaking problems before I started too, but I have undoubtedly got worse too).

When I look at the essay now it doesn't feel like it was me that wrote it at all, I just don't really remember writing any of it and none of it looks more than vaguely familiar - it's weird. I find it hard these days just to physically read the thing let alone believe that I actually wrote it!

So I'd say how I did it was with lots of determination, a ton of stupidity and at GREAT personal cost. I pretty much gave up 6 months of my life for it and even 8 months later I have not regained the level of health I had before I started writing it. I don't know if it was worth it but it was something I felt I had to do, I will NEVER put myself through anything like that again though, the price was just so unbelievably high, I haven't even explained the half of it. It was hell, pure and simple. But I just really felt like I had to write something to really express to everyone around me what I was going through, nobody really had any idea and I wasn’t really getting anything like the support I needed so desperately. I knew everyone still wasn’t really sure 100% if I was really physically ill or not and I just couldn’t stand it any more. I needed them to know how it really was finally, I’d just had enough of it after eight long years, the not being believed (not to mention the lack of any kind of help and everything else too). It feels as hellish as the illness itself in many ways, the disbelief. I just felt like I couldn't take another day of it let alone another year.

My writing has helped these things quite a bit - so I suppose it worked in the end. I wish I hadn’t had to do it that way though. I hope I haven’t used up my one and only chance at improving a tiny bit to write my essay, that idea terrifies me. If I could have another small improvement I would treat it so so gently to try to coax it to stay…I just hope I get the chance.

Now I just write 2 or 3 page pieces (VERY slowly) with no research in them much because it’s easier (like my 'Day in the life' piece) and only write for about an hour a few times a week or so and I do pay for that a fair bit still but I just have to do it. To be honest, writing about ME keeps the overwhelming fear about my life at bay somewhat, not the fear for the future, (I am still irrationally hopeful about that, unrealistic optimism is something I just can't shake!) but the fear of how I’m going to get through now, each minute, the rest of the day. I feel like I can’t just lie here and take it, I have to do something to kind of fight back somehow or I’ll go mad or eat myself up with anger about it all - all the injustice, abuse and neglect that surrounds ME, all the horrific and tragic and utterly heartbreaking stories I've been sent from so many ME sufferers; and parents of children with ME...

But having said that, once I finish this site I do plan to take a very long break from writing anything at all, I feel like I’ve said just about everything I’ve been dying to say for the last 5 years but couldn’t and it feels really, really good to finally get it all out! Just a few more pieces to go.