Friday

When G gets up for work, I manage to coherently discuss the plausible locations of his uniform, and point out his unwarranted beard. I’m shuffling to the bathroom in a way I would describe as “normal” now – although that definition is highly debateable. It only requires minimal assistance from nearby walls and furniture, and my balance is no longer quite so elusive. Progress is slow, but at least 10% of that is the cat’s insistence on sitting down precicely where I intend to put my foot, coupled with my inability to lift it high enough or far enough to get over him. This morning, I feed him, then we go back to bed.

I wake up just before one, feeling amazing. There’s no flueyness in my head, and when I turn the (admittedly dim) light on my eyes don’t start screaming at me to make it stop. The pain in my muscles has reduced itself to a perfectly bearable level; my headache likewise I would merely classify as an irritation. The recovery from Sunday’s escapade seems complete. I feel… normal. I’m sure my legs could manage a dance or two, a jaunt down the stairs and to the shops. I feel tired, but it’s just one-all-nighter-tired; people deal with this all the time. Maybe I’m getting better. Maybe I am better.

By the time I reach the kitchen, my feelings of normality are crushed; I shuffle all the way and my legs are tired by the time I’m there. I feed Tibby and make a cup of tea, then make another one remembering to actually boil the kettle first this time. My sudden burst of energy is celebrated by microwaving myself something hot to eat, then munching it in the living room while the cat plays in the sunshine. I switch on the fan and use it to blow bubbles for him, laughing as he leaps up to burst them. The endless movement of the bubble-wand (into the pot, out of the pot) tires my hands out, so he only gets a few minutes. We go back to bed, and I do my usual internet stuff with him curled up on my chest, doing his best to interfere.

I manage to concentrate better on the forum postings today, but that tires my brain out faster so we have a doze. When I wake up, I smuggle the wool-bag under the duvet while the kitten isn’t looking, and do some crochet. I’m actually pretty amazed that I can do it while watching TV shows; multi-tasking is not dead! It tires my arms out pretty fast but I enjoy it too much to stop when I should. A small, fluffy ninja sneaks a ball of wool away while I’m not looking, and liberally applies it to the bedroom floor. Not impressed. The cat is sternly reprimanded, but not before I sneak a few photos of him looking adorably guilty in the middle of the blue-spaghetti frenzy.

Twenty minutes of crochet brings back the flueyness, prompting me to abandon it shortly after and return the bag to a safe and kitten-free location. Usually I would persevere against all reasoanble advice, but I don’t want to push myself too much. I have plans!

I’m super-excited, because someone is coming to visit tomorrow. I can go for more than a month without seeing anybody except G, so two social events in one week is amazing! (I also get super-excited about receiving letters and emails, and whenever G buys me sweets or ice-cream: life is slow.) I used to put more effort into tidying up beforehand, but I’ve grown slightly more sensible than that now. G is also getting pretty good at keeping the living-room in a reasonable state, and I’ve stopped caring so much about the bombsite where our kitchen used to be found. Still, I give a cursory glance at the area to ensure no disasterous mouldy mugs or escaped-cat-litter. I remove my lunch stuff: safe!

There’s a part of me that stubbornly insists that nothing’s wrong, and I can do anything I want if I just put my mind to it. When I’m in payback mode (or whatever it’s called: Post Exertional Malaise; Post Exertional Fatigue; Post Exertional Neuro-Immune Exhaustion; I-really-shouldn’t-have-done-that-yesterday…) it’s not there at all, but on days like today it’s hard to ignore. Compared to where I could be, it’s heaven. Compared to where I have been, it’s nothing at all; I could kid myself that I’m just fighting off the flu and I’ll be all better by tomorrow. Humans have an amazing ability to acclimitise to almost any situation, and think that it’s “just how things are”. It’s only when I compare my life to what other people think of as normal, that I realise my “normal” doesn’t nearly match up. I just have to try sitting up for a while, to realise that there’s maybe something wrong.

Days like today are brilliant. Days like today could almost make me forget how sick I actually am. I think that I feel well; and if I don’t do anything ridiculously exertional (don’t sit up, wash myself, cook, walk, read, wash dishes, do laundry, tidy up, clean the litter tray, expose myself to light, play games, listen to music, go outside, get dressed….) I can keep the charade up for days, even weeks. As long as I don’t question why I can’t carry two cups of tea, I feel normal. Well, maybe a bit achey from everything I did yesterday; I’m sure it will pass.

That’s part of the problem; as long as I play it safe, I don’t think of myself as ill. But eventually I have to do something out of my league, just to survive, and it all crashes down. When I’m careful, most of my days are like today – but I can’t keep it up forever.

I feel like I could maybe handle more crochet, but I don’t want to exhaust myself before tomorrow so I go back to bed and rest some more. When G gets in he runs me a bath; I add lots of oil, my pathetic attempt to displace my inability to wash. Thank you that I can still stand to wear deoderant and perfume. I get in and relax, my mucles releasing aches I didn’t realise I had. I glance at my legs and instantly feel like I’m masquerading as a yeti. At least I’m not as furry as the cat! G has put a chair next to the tub with the towelling robe on; Tibby curls up on it and stares in fascination at the intriguing water. I chat happily to Tibby and he ignores me in a cat-like fashion, so I flick water in the air for his entertainment. G comes and talks to me for a bit, then rinses my hair and washes it with some bicarb-and-water. I used to have to wash my hair every day to prevent grease-overload, but last time I washed it myself I couldn’t use my arms for a week. Fulfilling my daily shampoo and condiitoner ritual is too much to ask of any man, so I decided to take advantage of my inability and try out the “no shampoo” thing. Sodium bicarbinate or vinegar both do as good a job of cleaning as any shampoo, but I still wind up with a grease-bomb on the intervening weeks. Hopefully one day I’ll look like I actually clean it.

The chair is not just for Tibby’s benefit; it means on a good day I can get out of the bath by myself. I rudely displace the cat, and pull myself up on to the edge of the tub. All the benefits of the heat on my muscles are swiftly undone as my weight pulls me down, trying to keep me in the water. I heave myself again, into the chair this time, and rest for a minute or so. Victory! I lean my arms back to try to get the dressing gown on without getting up, but it’s a futile struggle that only results in more joint pain. I get up, put it on, and sit back down, then wrap my hair in a towel and shuffle through to the bedroom.

Tonight, I succeed in my attempts at making dinner, sitting down and entertaining Tibby with a feather-on-a-stick while the microwave does the work for me. G carries the food through on my behalf, of course. After dinner I lie back down and spend a while chatting on msn, Tibby bouncing around the room like a mad thing, making me laugh. Normal bedtime; normal insomnia; normal sleep.

Advertisements

One response to “Friday

  1. Pingback: Living with ME | a Path Through the Valley