I have been ill for about eighteen years. Sometimes I’ve lost count how long it is – and no matter that I’ve had half a lifetimes practice; it does not stop me waking, shocked every morning.
I lie there, and think – seriously, am I not better yet? An eternity of flu – an eternity of waking up thinking, I’m sure sleep is meant to be refreshing, and that it’s not normal to feel like several days and nights have passed without it. The singing of a nervous system that has who knows what wrong with it, sends a constant buzz around my ears and down to my fingertips. There are pressure points all around my skull, and my limbs, and my back, and my legs that all take turn to ache, or burn or just niggle away. Once they get massaged, I am astonished just how much pain there is in the depths of my muscles – all the time. Maybe today my head will hurt, or I will get muscle twitches after walking short distances, or muscle spasms in my hands after more strenuous activity. It’s winter now – so my teeth hurt a lot it seems to be a sinus thing, triggered by allergy, or infection or both. My head feels taken over – there is a solid lump of not me in there.
It’s like a grey metal cloud that lives at the front of my head. It makes me dizzy sometimes. It eats up the energy it takes to sit up, or stand up. I never stand without having to concentrate, and sometimes very hard just to keep my legs straight. Worst case scenario – once my speech slurs, and the wobblies hit, I hit the ground very fast, with eyes shut, ears open, but with a slip of time missing. I know I’m going to collapse just before it happens. Just. Sometimes at the point my legs melt. Then there is a blank bit, and then I am on the ground. That bloody ground – it knows how to catch you, but not very well. It’s like a stupid flat thing just rushing up to you, as your muscles do nothing, so you end up like a floppy girl sucked into gravity’s magnet.
Not the best for not alarming people. On the floor, is actually not too bad; that is if you excuse the firmness of concrete, or the nip ping of gravel in your knee.
I have a body clock that is screwed. My mood is tempered by whatever is going on in my immune system/hormones/energy now. It’s got its own pattern – if I get too low, chances are I’m knackered. If I get a bit high, and giggly; chances are I am knackered, and up for a round of increasing insomnia – known in ME land as – I’m wired to the moon tonight, and too tired to sleep, and yes it looks like I’m better, but actually my brain is acting like a kid on coffee – tomorrow you know there will be tears. And possibly a solid night requiring twelve hours sleep. Or a broken night. Or a long night followed by something like lunch, and then more sleep, and another day missing from the calendar.
I never ever ever feel well. Not free to walk, or run or dance, or not measure how much I’ve done well. Not actually no pain all day well.
I am shocked when I wake up. Is this not going to stop then? Yes; I had IBS, and now I don’t – progress, fab. Yes; I stopped having migraines after changing my diet for the third radical time. Yes; I used to be unable to work, and I’ve worked part time. But not once has the rabbit eating the middle of my brain with its eternal appetite stopped.
I was asked recently, before prayer for healing; what is it that bothers you about this the most.
I replied, that I hated not being myself. Me, well, would have been a disaster relief nurse who worked in war zones. Or a teacher (I had a place in college for four years held open; they really really wanted me). Or a manager full time. Or just me.
Not somebody who has to say – oh flickering lights; don’t mind me I’ll cover my eyes, so I don’t clunk over. I would eat everything – and not just once. I’d cook and write recipes, and be adventurous. Not; excuse me as I turn down many social occasions with increasing allergies.
Careful? F**k careful. I hate not being spontaneous to the point of actually even being able to run for a bus. I hate having to talk, and debate, and negotiate and consider. I fear being like the ill person in the media. They are the tiresome ones, the wheezers, the easily portayed. The moaners. They – oh do be careful with me – I might snap.
I hate having to say that – actually an astonishing amount of everyday life is too much. Too cold, too draining, too blocked off.
I would love to wake up, and have the luxury of saying – I can’t be a***ed going to the gym, when actually if I wanted to I could ceilidh myself into a stupor and it would not matter. It would not end up in – you’ll never guess what kind of relapse I had then, eh?
