The ringing in my ears doesn’t stop. (Except when I stop taking the only medication that seems to help a bit against the constant bone-deep exhaustion.) These days, I can measure my exhaustion levels by how dry my mouth gets; I’ve never in my life been as thirsty as I get now after walking up one flight of stairs. (“Thirsty” isn’t intended to be a euphemism, but the sentence works in either case.)
I was only able to sleep once I took sleeping pills last night. I was already exhausted when I woke up. My first meeting was at 11am; once I got out of it, I had to lie down. I had three client meetings in total today and spent around 90 minutes on client work, mostly writing a presentation. By 6pm, I felt dead inside. I went outside to run an errand (obviously not literally ruining, in case that was ever in question) and, most of all, to feel the sunlight in person. I took the scooter and by the time my errand was done, I was too exhausted, the sun was too bright. We watched a 23 minutes long episode of Staged, I had to put my earplugs in because the sound was too much; on the other hand, that meant I could hear the tinnitus more loudly. I spent the rest of the evening sitting in silence. I briefly cried a little; I didn’t want to cry more, even though I did want to, because I felt that it would be too exhausting. Today is day one of a major ME/CFS conference, I wanted to watch it but was too tired.
There’s so much more to be said about all this. I type these notes on my phone, mostly before sleeping or when I can’t.
I feel in a perpetual state of budget cuts. I’m so thirsty again.
I’m in a bad mood right now, I feel like I exude toxic fumes, or rather what feels like slimy neon green/yellow goo: I want to yell at the sun. I bargain with no one, but I bargain. I get frustrated, with the tv remote, my knitting yarn, the kettle, a moth, with sweating, with not sleeping, and, at the root of it all, myself. It’s been long since I’ve hated my body as much as I do now. I pick at the skin in my face; I get breakouts all the time on my historically clear skin; I suppose it’s a side effect of the new medication. My face looks like a Martian landscape. I rage at the injustice of it all. I get frustrated at my brain, at not being able to think let alone speak clearly, how physically exhausting it feels to try and form a sentence. I start a sleep meditation because I can’t sleep, again, and when it begins, I want to yell at the lovely woman whose voice is supposed to help me sleep to SHUT THE FUCK UP. And when my self care app sends a check in, I want to strangle that chippery bird with my hands. (I’m not violent and would never.)
On Wednesday, I need to get surgery, just a small procedure to remove part of a nail (on my right middle finger, of all places) and a tumor that’s grown there.
I count my houseplants; each one reason to stay alive. (I guess at least the cacti and h-something plants would be fine without me.)
I don’t want to feel this way, per se, but at the moment I don’t feel like I know a workable alternative.
I try not to think about, and, most of all, not panic about the bleak outlook.
Last night I started reading another book on acceptance. I’m thirsty again.
Patience. Patience. So. Much. Patience. (I just remembered that I need to start typing a period using a double tap on the space bar, instead of always switching to the punctuation view.