i hear the voices when I'm dreaming

the older I get, the more I dislike the Night Of Loud Irregular Noises. Grumpy face.

Also my brain decided it would be awesome to literally cry about not being able to hug. (I can receive hugs, awkward sideways ones anyway, but haven't had the arm mobility in years.) This isn't a new thing ... I forget exactly when I lost which joint, but it's probably a least ten years since I could do a one-armed wraparound in response to awkward sideways hugs, longer since I've been able to do frontal hugs. So I don't know why it hit last night. Maybe partly because in my rewatch of Bones (up to season 7 by today; I just hit the ep with the mention of FOP) there was a bit where Brennan ends up lying curled up against Booth with his arms around him, and I started thinking about what it would be like to be held like that, especially by someone who a) is extremely attractive and probably good-smelling, b) has strong arms and a strong protective instinct, and c) cares deeply for you. But the later crying was less about being held and more about doing the holding, with a side of "I'm a horrible pet parent because I can't snuggle or scritch" ... so idk.

I got notified earlier this week of a Covid exposure Saturday (someone I was around who was symptomless but later tested positive) so my brain then started flailing about whether emotional crash -- and/or repetitive yawning, which I kept doing yesterday -- was a potential symptom. Tested today and it was negative.

The weather here has been hot ... triple digits for the first 10+ days of July, including some 110s. I objected to the universe but that made no difference.

In other news I am planning on going to visit Yahtzee this weekend. (He "retired" to live with his puppy raisers, who live an hour or so away.) He is a Very Good Boy and I miss him, though my aides probably don't miss the poop cleanup, lol. I will probably miss him more after this visit because it'll just remind both of us of What Used To Be. I'm just hoping he isn't too mad at me.

Doesn't really feel like the year is over but I don't know that it ever does.

I feel rather hollow right now. Partly because today was a big nothingburger (back hurt, possibly influenced by weather; finger joints hurt, ditto; my mom kept texting me about stuff; I didn't really get anything done) and partly because of the whole "I'm nobody, my life is pathetic" brainweasel shit.

I haven't even come up with a word for next year (the thing I've been doing in place of resolutions, see the woty tag for more).

I don't usually end up crying on NYE but that seems to be tonight.

I am planning to watch something fun tomorrow -- maybe a rewatch of Knives Out and/or Glass Onion? Muppets Christmas carol? -- but lately I haven't been getting much watched. I also want to do knitting but I'm worried it's gotten too hard to do.

Maybe I should just pretend I'm a cat and sleep all day...

* started Ukrainian on Duolingo... the differences from my base knowledge of Russian from college are throwing me a little (de instead of gde for where, xto (khto) instead of shto, etc) but eh I'll survive. Not sure how long I'll be juggling three languages (Spanish, Yiddish, Ukrainian) but I'm starting to learn to not worry about that sort of thing.

* I'm trying to start doing a modified Sabbath ... not fully tech free, but establishing a Day Of Rest. If I could still write by hand easily I'd do journaling, but it doesn't feel the same doing electronically, especially since typing is also awkward and slow. But reading is a thing. Yarn stuff -- maybe slow knitting. Coloring, maybe. I know there are a million and a half ways to Do Sabbath so I'm investigating different things.

* I'm still loving the super short hair thing omg. It's been, what, three weeks? It's grown a lot (millimeters have more impact) but still short af.

* I really hate being tired all the time. Not sure how much is just "pandemic + war + racial justice + disability justice" burnout, how much is disability-adjacent stress plus chronic pain, and how much is some mysterious undiagnosed medical fuckery going on.

I keep not getting around to posting here. Not sure how much is "typing is hard" (this entry took an hour! On my tablet, which I can type on faster than on my computer!) and how much is just being out of the habit.

Ended up not doing turkey day at my dad's, mostly for mental health (I have Opinions about people who choose not to get vaccinated during a pandemic "because freedom", and I didn't want to spend the entire time watching what I said) but also because... I'd made a comment on twitter about wanting to do Hanukkah this year, so my dad offered to do latkes and candles last Sunday, aka the first night, and sent me home with the menorah and candles and some thanksgiving leftovers, which ended up being pretty close to perfect.

The candles, incidentally, claimed to be dripless. They... uh... well... weren't. I'll upload photos at some point.

I'm also sort of getting into Yiddish on duolingo, though I'm shaky on some of the alphabet (duo uses the Hebrew lettering for Yiddish, not the transliteration into Ronan lettering) ... I've got the consonants pretty well, but the vowels are killing me. And for the language itself, it's Germanic enough that I'm both doing okay and hella confused. There's a vowel shift going on, making words sound like other words.

From memory -- at least in the Hungarian Yiddish dialect duo is using, the word for "you" is /dee/ instead of German du. The word for here is either /du/ or /doh/, i forget which, instead of German da, and I keep wanting to translate doh as there (German dort). I also get into trouble with /vee/ and /voh/; in German the first (wie) is how and the second (wo) is who, but in Yiddish /vee/ is who. (Amusingly, how many -- in German wieviel -- sounds like wiffle, just with v instead of w.)

It's kind of like the German interference I had learning Russian. The word /ya/ is yes in German and I in Russian; /da/ is yes in Russian and here in German; all very frequently used words. So inevitably I'd use the wrong one ...

Sometimes it's not confusing between words, just hard to remember. I can after a second remember that /daan/ in Yiddish is your (in German it's dein, pronounced /dayn/ rhyming with wine) but trying to generate the Yiddish is harder, both because remembering THAT the vowel shifts isn't the same as remembering HOW, and because the vowel letters are hard for me to remember.

Anyway, at least duolingo has taught me how to say that things like "a zebra in a pyramid". So helpful?

(Ok to be fair they were teaching similar-to-English words for alphabet practice .. /a zehbra een a piramid/ or /a kehmul een London/ are easier to decipher than, uh, other things.)

+ + +

Totally unrelatedly, the Babylon 5 rewatch I'm doing with my mom -- so slowwww because I have limited mom stamina, especially when she Lingers so one episode takes 2-3 hrs of mom exposure, and she doesn't want to watch separately -- got to A Voice in the Wilderness, which is one of my favorites from S1. I'd forgotten that was the episode with the Ivanovo-is-God speech, lol. Also Londo's Hokey-Pokey rant.

Next up is Babylon Squared. Also among my favorites!

(Shadows and Portents is up there too, although in rewatch I got annoyed at the cc text -- when the Centauri dude is laughing about how his seer aunt predicted he'd be killed by shadows ha ha how silly, and he ends up being killed by a mysterious vessel later that episode, snd the point of him disbelieving the prophecy to begin with is that he thinks she means shadows, i.e. darkness on the wall, not knowing that the Shadows are an old race recently reawaken ... and the first time around that's what the viewer thinks too. Only, the closed captioning text capitalizes "Shadows" in that line...)

B5's special effects and title sequence both look 90s as hell.

+ + +

Speaking of my mom ... she wants to know what I want to do for Christmas. My gut reaction is "introvert party with me and the pets where I play animal crossing and watch die hard and nothing else" but I don't think she'd be happy with that, lol. I'm just ... idek. I'm cynical about how commercialized and ubiquitous Christmas is these days, carol singing makes me miss the harp I can't play any more, there's no magic any more, and I realized one of the things making me dissatisfied with Christianity is that if Jesus fixed things (and I know that's a big if but it's also central to Christianity) why are things so fucked up. And my increasing dissatisfaction with Christianity means that the "prepare for and celebrate the birth of the Baby Who Will Save The World" aspect of Christmas is less gripping, and the family aspect of Christmas is awkward when my mom is a lonely energy suck and my dad is married to someone who thinks I hate her and my sister has kids who are cute but exhausting, and I'm an introvert anyway, and I'm awkward about giving and receiving gifts. And there's also the "pagan holiday they got papered over with Christianity labels" factor, and my increasing awareness of Shitty White-People Behavior.

But I'll probably end up doing something with my mom anyway.

+ + +

For some reason I am remarkably chatty today. Talked my aides' ears off; even posting here is a reflection of that. No clue why but it's better than the sheer exhaustion I've mostly been feeling.

Yay I guess?

+ + +

Got Covid booster today. In home, which was nice and convenient. My initial vax was J&J so I asked for (and got) Pfizer.

Yay for another layer of Swiss cheese protection, boo for needing it.

2021 is not getting off to a great start.

My aide S, who's been doing 90% of the shifts because all the students are gone (and even with the students was doing half the shifts) .. got hit by a car last night while walking her dog, & is now in the hospital with broken foot and ankle. And has to deal with police shit because it was a hit and run.

Luckily my roommate is here and able to cover, but.

I keep going from 'okay' to random crying. Can't tell how much is for S and how much is for me and how much is just Emotions Suck.

(Also sigh at my mom. She's physically unable to do the commode chair stuff, so she can't help me out in that way. In the group text with her and my sister I said I wouldn't be able to do the family video chat today, explained what was going on and that I was scrambling to get aide coverage, and literally said "there's nothing either of you can do to help aside from not asking a lot of questions, I'm just letting you know". So of course my mom insists that she could help with aide stuff... then texts me to ask if I'll need her help today... I know she wants to help but I don't need to deal with managing her as well...!)

::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::

I've been sleeping like 15h/day and it's not enough. no fair.

want to respond to comments but ... energy

last Sunday had animal crossing stuff in the evening (a light meteor shower along with fireworks) but ... couldn't stay awake. 7 fucking pm was too late wtf. and a villager is moving out and I don't have energy for island hopping (for non-acnh people, when a villager leaves you have a small window of time to wander to "mystery islands" and invite someone to move in, otherwise the system picks randomly; island hopping doesn't guarantee you'll find someone but if you do then you can control better who lives with you)

(am thinking of setting my switch to eastern time so I at least get in on evening things; right now I'm getting sleepy at like 6:30)

haven't touched yarn in weeks

just...

tired

So many complicated emotions right now.

1. Bluprint (aka what used to be Craftsy) is offering free classes right through the 16th, but some of what I'm watching makes me sad because mobility restrictions mean I can't do those things any more. Also because drawing-related tutorials (which is what most of yesterday was) are like "then you take this pencil and make a line exactly here and you have a photorealistic animal portrait" and my artistic ability is barely above stick figures. (But I can hardly practice, because mobility.)

2. I realized yesterday that I literally hadn't been outside for two weeks, and that wasn't great for my mental health. So today I donned a mask and went for a walk. Yay? Saw turkeys... they weren't social distancing, lol.

3. Went on fb for the first time in a few days and found out another FOP person has passed away, someone who was only 15. I wasn't really close to her, but it's always weird to lose someone from the community, especially suddenly. And I can't imagine what it's like to have your daughter die ... well, at all, let alone in the car on the way to the hospital. ...I used to think I wouldn't live to be 30, then that I wouldn't be 40. There are older FOP people, but then things like this happen to much younger people. (It wasn't covid, apparently.)

4. I'm having trouble keeping up with any of my social groups. Here, on rav, on fb, anywhere. It's not that I don't have time, but just the ... I don't know, emotional reservoir? Capacity? Something? ... to even read, let alone interact. And I feel like a horrible friend because I don't know what's happening in anyone's lives.

5. I hate that for health reasons I should be more isolated but for essentially the same reasons I can't, because I have to have aides coming in multiple times per day. So I have constant exposure -- and also constant imposition on my introverted self, which means constant exhaustion. Mrgh. I'm glad I have the support I need? But I really really wish I didn't need it in the first place.

6. Caved and got Disney+. Disney and Pixar and Marvel and Star Wars and NatGeo. So much to watch!

good news: my brain is finally willing to accept it's not november
bad news: I keep thinking it's early december

good news: numotion finally got around to fixing my chair (the on/off lever snapped off, plus the left wheel was squeaking badly) ... it only took several months and two days where I rearranged schedules for appointments they didn't show up for (once because parts weren't in yet, once for no reason they ever explained)
bad news: the (new) left motor conked out entirely on friday. my dad is taking it in tomorrow

bad news: van battery died, lolsob
good news: it didn't strand me anywhere

good news: puppy is still hella cute



(there is no bad)

Health update: slowly coming out of depressive chasm; being entirely off the prednisone helps. Got a migraine (three days and counting) that is an atypical-for-me location and seems to involve my skull not liking my pillow. It gets worse when I'm lying down, and feels like there's a big rock under one specific spot on my skull. (There's no lumps in the pillow -- I've had multiple people check -- nor zippers or seams or anything different about that spot. It's not where any of my straps hit.) The spot on my head, in the back and a little right of center, feels "soft" to my mom, "like a swollen lymph node" to one of my aides. Not sure whether to go to dr or not ... of course it's a holiday weekend anyway, sigh.

Had a realization yesterday:

although our culture does a disturbing amount of physical health shaming (anything wrong with an overweight person is Their Fault Because Fat, and being overweight itself is A Moral Failing; getting lung cancer is Obviously Because Smoker; chronic issues are Not Enough Yoga or whatever) -- it’s never about the mechanisms, in that even if it’s Clearly Your Fault that you got cancer / diabetes / measles / the flu, you’re not generally held personally responsible for tumoring on purpose or whatnot -- but with mental health there’s so much blame and so much expectation of willpower. I’m basically having the depression equivalent of getting the flu, only instead of coddling myself while my immune system does its thing and I’m allowed to feel like crap and to not get things done because I’m sick, instead I’m beating myself up for being in a bad mental place and not dragging myself out of it.)

(though partly it’s tangled up in a learned thing from childhood where I somehow ingrained that I have to be super hard on myself because otherwise things don’t get done, and intellectually I know that a) there’s a lot of executive dysfunction shit going on that means I’m not actually as lazy as I think I am, and b) beating myself up doesn’t really work that well, but I can’t stop because what if i then fail at even the few things I’m scraping by on)

Thinking of depressive slumps as mental flu rather than Thing Which Is My Fault is ... surprisingly helpful. It's not about fighting it (which doesn't really help and just ends with me hating myself), but also not wallowing in it (which is also bad), just ... I don't know. I can't really word *why* it helps.