There's a train of thought which says that Chronic Fatigue Syndrome sufferers would get more attention and sympathy if CFS was called myalgic encephalomyelitis more often. One sounds quite scary, the other sounds like you need a little lie down.
There is no word that can encapsulate the degree of 'tiredness' we're talking about. In the thirteen years since I developed CFS, I've had a few goes at trying to explain it. It's like having the flu, without the head cold symptoms. It's like when you've been ill for ages, and you try to get out of bed for the first time. It's like trying to go through your daily routine with ankle weights strapped all over your body.
No, you know what it's like? You know how sometimes after a really hard day's physical work you go to bed feeling really sort of pleasantly exhausted? Every muscle is achy, and you sink into the bed so rolling over feels like way too much bother. You know you're just going to fall asleep nicely and you've earned it. It's just like that, except that's how you feel when you wake up in the morning. It's like you've been beaten up, run over by a train and set in concrete.
Tired. I've had surgery and not been that tired. I've had pneumonia and hallucinated so badly I thought my Panadol packet was a baby dragon, and not been that tired. To get an official diagnosis of Chronic Fatigue Syndrome, you have to wake up feeling like that every morning for six months. A hundred and eighty days of waking up tireder than you went to sleep. It's despair.
The utter soul-destroying weariness is the worst of it. But it comes with a whole host of delightful add-ons. Fibromyalgia and its constant shifting reasonless pain. Fume sensitivity – for me it was printer's ink and petrol that I couldn't bear to be around, and bleach was dizziness and puking. For others it's perfumes, or food smells. And in the first few years of my CFS I developed, for the first time in my life, hypoglycaemia, dermatitis and migraines. I slept twelve to fourteen hours a day and lost ten kilos. You could get your fingers all the way around my collar-bone.
I won't go into the shit over doctors and trying to get some kind of treatment that wasn't anti-depressants, partly because I've touched on it before and partly because nobody wants me blubbing over my keyboard. We learned to cope, we adapted our lives to accommodate my illness, the kids started school, and things gradually got easier. We bought a bar stool so I could cook sitting down. I'd pretty much forgotten the way I used to have a good day and it felt like a total rush, simply not being exhausted, feeling 'normal'. How I used to have to be so careful I didn't do too much, because then I'd have to spend a week in bed to recover.
We got to a point where I was pretty much okay as long as I was careful, and I learned to recognise my triggers. I'd pick up the junk mail and it would reek, and that would be my cue to be extra-specially careful. If I was travelling I'd work in rest days, because an hour on a plane meant a day of being utterly shickered. Looking more or less well, people would assume I was lazy, but it wasn't worth the effort of explaining why I had to sit when older people were standing, why I couldn't go to the corn maize and walk for two hours. My illness has cost my partner and my children so much.
For the last couple of years, I've been even better than that. Well. Normal. And normality is a remarkably easy miracle to take for granted. That must be the reason that, every now and then, I need to be forcibly reminded. I forget that I'm walking on a thin layer of icy Fine over a deep lake of Oh Fuck.
My latest relapse, after a trip away and a couple of truckloads of extra stress, only lasted two days, but it was enough. Enough to remind me what it's like to be so tired and pained you can feel the muscles that move your eyelids when you blink.
I don't really want to think about it, let alone write about it. But every time I do break my initial promises for Up Front and whine about my health, someone writes to tell me how much it's helped them and the whole thing seems humblingly worthwhile. Suck on that, Protestant Virtues.
