It’s nearly six years since I woke up feeling like a bus had run over me. I couldn’t move in the bed, never mind get up to go to work. After a while I managed to get some clothes on and walk the children to the childminder (4 doors away). For far too long, the childminder trek was as much as I could do. I did attempt to go back to work, but I couldn’t work out what I was meant to be doing and I couldn’t walk as far as the carpark to get home. Eventually, work and I called it quits and I moved to spend my awake times playing on the internet.
One of the many things I’ve learned in the last six years is how totally inadequate the word ‘tired’ is. Everyone gets tired. We all need rest. I hadn’t realised until it happened that there are varieties of tired, and that rest may not be enough. There may be no escape from the tired.
Wipe out: Brain and body both totally fatigued. Go to bed, sleep. Expect nothing. See you sometime.
Awake but immobile: Oh, but this is frustrating. Lie in bed, not sleeping. Think about the grub, the ironing, that form that needs filled in. Fail to move. Fail to sleep. Hope to get up before children get home from school.
Up, but not switched on: Annoyingly common. Up and washed, but somehow nothing gets done. Hours lost on the internet or television. Not writing blog posts, not doing anything for the Rare Disease Partnership. How did it get to be home time already? How come I didn’t have time to make that phone call? Oh, was that meant to be today?
Appearing to function: Dressed, out of the house. Drinking coffee. Anxious. Limited concentration. Liable to forget key tasks (Why am I in this shop?). Difficulty being sociable, but delighted to be in the outside world, so trying hard.
Functioning brain: I can read, research, think, complete a variety of routine tasks. I can join the mental dots, even think creatively. This could last for half an hour or half a day. A run of several days with functioning bits will mean a clean house, admin done, a social life, walking and photograph taking. Go me!
Of course a functioning brain does not mean a functioning body and so the walking stick, taxis and phones can still save the day.
I’m still struck by how it’s not possible to go for a walk to wake up my brain- the energy is too limited for that. If my brain is that fogged, I’ll need all the resources just to nearly function. Going for a walk when I’m struggling would be practically impossible and totally counterproductive anyway. I get aches and pains regularly, especially in my right arm, left shoulder, legs, throat and head. I’m generally stiff and sore- hot baths, hot water bottles and the prime position by the fire help. I’m vague. My family need to manage me. My ME is a pain, it rules my life; but it’s not severe.
But even so, don’t I sound like an awful wreck? I’m not- just a little bit dozy, ditsy and in need of snuggling by the fire. I’ve adapted, pretty much. Imagine what it was like when I was worse, and before I started taking the tablets… I’m so much more fun these days!
It’s ME Awareness week, so forgive me if I go on a bit.