I haven’t wanted to say so, but lately my narcolepsy has been much more disabling than usual. I’ve been descending further and further into slow loris territory: slow, easily confused, physically uncoordinated, prone to error; capable of doing one thing at a time, and that only if I concentrate. As soon as I stop doing it, my body goes into full-rest mode, and my breathing drops into what sounds like the early stages of sleep. Nothing moves then unless I consciously move it, which is where the slow loris part comes in.
If you’re normal, you reach for a pencil or turn your head to look at something pretty much automatically. It’s relatively fast. When I’m running at these primitive clock speeds, going from a resting state to movement isn’t automatic: [?] [thing to look at?] [turn head] [continue turning head, look at thing] [thing?] [ah, yes] [if finished, drop back to resting state]. It can look odd. If you’ve never seen a slow loris move, imagine instead a simply-programmed automaton moving smoothly but at half speed.
Forgive me; I very nearly digress, though that’s part of it too. When everything takes this long, and you can only hold on to one task at a time, it’s easy to forget your initial purpose, and take your cues from the matter nearest to hand: a drunkard’s walk, digression succeeding digression. Vast accumulation of unfinished weblog posts.
Yes. Anyway. Narcolepsy, definitely of the bad. My weight’s gone up. I have trouble focusing my eyes. I have trouble staving off depression. I have trouble navigating and doing math. Small complications make long delays. Over the last couple of weeks I’ve noticed that my hands have started curling up whenever I’m not consciously doing something with them: increasing muscle weakness. Doubtless that’s why I dropped so many ornaments when I was taking them down off the Christmas tree.
Finally, today, Patrick noticed what I couldn’t: my Cylert tablets (generic name pemoline, my main prescription), which are bitty white pills, seemed bittier than usual. Checked the label on the prescription bottle. They’re the wrong dose, half the strength they should be.
Oh. No wonder. No (insert here long string of bad words we all know, with many repetitions and grammatical variations) wonder.
That’s at least six weeks at the wrong dose. It may have been four and a half months, if the previous prescription-plus-refills was written to the same strength. My life is lived on narrow margins at the best of times, and I’ve been on a half-dose of my medications. No wonder it’s taken forever to catch up after that round of the flu. No wonder everything’s been taking forever. No (emphatically unrepeatable) wonder.
…If I allowed myself to think about how much of my life has been eaten up by crap like this, I’d become unmanageably angry, and there’s those narrow margins again: I can’t afford it. For however long it took me to come to terms with it, that much anger would suck up all my available attention and energy. I might hazard it if I knew in advance how long it would take, but I don’t. So instead I rage briefly, then go back to my eternal game of catch-up. It may be justifiable anger, but I won’t trade the rest of my world for it.