i hear the voices when I'm dreaming

Saturday I noticed my voice was getting a bit rough, but I'd been doing a lot of talking (interviewing potential new caregivers over zoom) so hoped it was just that.

Sunday I woke up with headache, increased voice frogginess, and sore throat. So definitely sick.

Today I took a Covid test and it was positive.

(Sigh)

To be fair, lasting this long without having gotten covid is pretty impressive, especially given the number of people I have coming in and out. And hopefully it doesn't get too much worse. I haven't lost smell or taste yet, haven't had a fever that I know of (I did sweat a lot Saturday night though, and had weird sleep quality; last night was better), and so far (knock on wood) it hasn't gone into my lungs.

The other fun bit right now is I have a new flare up (fop) on the side of my rib cage. Which... I did an ExpressCare video visit to see if Paxlovid would be a good idea in my situation, and some of the questions were things like "can you turn your head okay" (loooool... not since maybe 1994) and "any chest pain" (yes but not from being virally sick). The neurospicy "must be accurate" impulse is hard to fight sometimes.

Anyway. I suspect I am going to be pretty antisocial for thanksgiving... which honestly I don't mind too much

Random realization: I have no clue if my masks still fit comfortably. O.o

I haven't actually gone anywhere since the flareup started; there could be seal problems since my chin is less chinny, and there could be "mask pressing on flareup" discomfort, and I hadn't thought of either.

(I still haven't had any emotional reaction to the change, and no clue when my brain will decide to actually process it. I will say that flareups generally narrow my priorities to "get through as comfortably as possible", but also most flareups its not quite this clear this soon about what some of the impacts will be. So ... I don't know. I'm basically standing at the top of a precarious pile of gravel, gleefully stable but knowing a slight twitch will start a cascade.)

why today is exciting, part 27: sat on toilet in a way that had the hip/thigh bone growth twanging my sciatic nerve like a banjo string

there may have been Language

(part 26 involved finding out one of the caregivers I'm training just had her housemate test positive for covid)

(part 25 is the PA political shitfuckery)

(I just kinda ... can't)

::falls over exhausted::

IFOPA (international community of people with fop and their families and also researchers and generally anyone involved with something fop-related) is having virtual conference this weekend (today tomorrow Sunday). Much zoom. Much videos. Much exhaust. Headache for half of today. Really wanted booze but it seemed like bad idea given headache.

Trying to walk my mom through figuring out whether she’s gotten a Facebook invite that she's expecting, didn't help. I had the foresight to say I wouldn’t be available for tech stuff during any of the sessions, so she just ambushed me afterwards instead. I always make the mistake of thinking it's just one quick thing to answer, then it turns into a whole saga of trying to figure out where she is and what she's seeing and it's just a pain. And she also wanted me to report on how my convention sessions went and what all did I learn and argh.

Also at least half my aides are going home for thanksgiving. Which is very annoying.

I'm generally indifferent about thanksgiving in general (the food is yay but no reason to limit it to one Thursday; the pilgrim-Indian-BFF narrative that modern thanksgiving is based on, that I grew up learning in school, is a thin cutesy veneer over a stegosaurus-sized pile of steaming 💩 that is the actual history, so I can't enjoy that and don't want to celebrate it; and I'm hella introverted. So I usually do tday stuff with my mom because it is hella important to her, but because COVID I'm not comfortable sharing a meal (I'm probably one of like twenty Americans following cdc advice lol). My introverted ass is quite okay with that.

But having aides gone is simultaneously annoying and understandable. I can't make them not want to do thanksgiving with their families, even in pandemic, but I don't magically stop needing to pee on holidays. And this year it's not just gone for the weekend, but a bit longer because COVID testing and quarantine buffer and such. I don't really have much leverage to say "no you can't go"; I can tell them it's inconvenient but if I say "you can't go you have shifts" I worry that they'll just up and quit, and then I'll be even more up a creek.

(also whyyyyyyy does my tablet keep all-capsing COVID argh)

::keels over in utter exhaustion::

1. Not dead. This seems more relevant a disclaimer given pandemic.

2. Am, however, having a FOP flare up in both legs -- down the sides of both thighs but also under the right thigh and pelvis. The last six days have been miserable during the day, in that there are NO comfortable positions to sit in. I've been tilting my chair back enough that my calf is starting to hurt from the pressure (the edge of the seat presses against my leg, in part because the seat pan is *too fucking long* because the wheelchair people ~didn't like~ how unsupported my legs looked in a shallower seat). It's also made dressing harder; I used to be able to "sit forward" on the edge of the seat and balance there, ao my torso and arms were free of the seat. But now I can't really balance and keep tipping over backwards -- not a dangerous thing because I'm just ending up in the chair, but I can't stay upright unless my left elbow is against the chair arm, but that means that trying to get my shirt on might end up giving me friction burns there. Argh. Also, pain fucking sucks.

3. On the bright side, thanks to some very generous friends, I currently have both an Oculus Go VR headset (I can't get 100% use because I can't turn my head, but turning my chair has the same effect, as long as I have someone around to let me know if I'm close to running into anything; one of MyChart favorite games is a roller coaster app. All the fun visual effect of roller coasters with no risk!) and a Switch with Animal Crossing (which I only got this week so it's not a spectacular island), so there are things I can do to distract myself from the pain.

3. I have a long and kind of teal-deer post to make on this subject but summary is I'm becoming really fairly certain that I'm somewhere on the (autism) spectrum, with a lot of masking going on. A lot of stuff from my memories suddenly make way more sense from that angle. And it makes it easier somehow to not beat up on myself for failing at things, because it's brain wiring and not me being lazy or whatever.

4. I miss having choir, so fucking much. I did send in a video submission for http://www.virtualchoir6.com (which is currently in the processing stages, and will probably take a while because they have 17.5k videos to smush together), but a) I strongly dislike videos of myself, and b) it's not the same. I don't even know if the choir I'm in will start back up in the fall ... and if they do I don't know if it will be advisable for me to avoid it (I don't think I'm high-risk for *catching* Covid-19 but if I get it there's a good chance it'll kill me, so I'm trying not to get it) ... but damn I miss it. Also miss orchestra stuff, even though I haven't been able to play violin in like 20 years. Some of that may be because I've been watching way too many two set violin videos, but. I think more it's just missing communal music.

5. I'm an aunt again! My sister had another baby, another girl, who is all of like three weeks old right now. It was a bit more complicated trying to juggle everything given pandemic, which she hadn't been expecting when she got pregnant, but everyone got through it with all bits intact. Oddly, there are fewer baby pictures this time than there were when her first was born 🤣 almost like she's busy or something.

6. I have been eating way too much sugar and carbs. I should probably cut back, but it's so yummy...