ysobel: (Default)
1. Still alive. More or less.

2. Finished my cactus bunny. It's frickin' adorable. Next up: prototype of a doll I'm designing. It is a person in a wheelchair, but more of a centaur-esque hybrid than a person and a separate chair, because really my chair is my legs. Concept art on my instagram.

3. Either I've been having more drastic reactions to low blood sugar, or I'm just noticing it more, but holy crap does my mood plummet if I go too long without eating. Today I was deep in lethargic anhedonia (not sure how much is depression and how much is blood sugar) and i had to force myself to eat because I knew food was good but I wasn't hungry and nothing sounded good, so I shoved food down and then twenty minutes later was feeling a lot more human. It's a little frustrating having to think of foods, because I don't always get hunger signals. And because I can't get stuff out myself, I need to remember to have sides leave something out where I can get it but the pets can't, and then I have to remember to eat it and also hope it still sounds good.

4. It doesn't help that my roommate tends to cook uber-healthily, and sometimes the "roast chicken and/or roasted veggies and/or sautéed kale and/or roasted potatoes and/or plain quinoa" gets a little ... boring. I'd rather have that than the polar opposite, and I'm in favor of generally eating healthy but with exceptions. And when I've forgotten food so nothing sounds good anyway, "oh hey i could have plain almonds for a snack" is kind of ... less appealing than usual. (Almonds are okay but not my favorite nut, and they're better salted; these are basically tasteless wood). It has the appeal of sawdust. And I have a voice in my head saying I should be eating super healthy anyway because that's the only way to keep my weight down or whatever, but it's a lot easier to eat when I actually want to eat.

5. I've also been in a funk lately. No energy to speak of, no enthusiasm for anything, no desire to crochet or read. I have theoretical desire to watch stuff on Netflix but that ends up not happening. I don't know how much is situational stress (chair, aide issues, generally not having reliable comfort) and how much is my depression changing its presentation and how much is blood sugar stuff. I should probably talk to my doctor, because there might be a medical issue behind it. I've had depresssion a long time, but it mostly manifests as self-hate and lack of energy, not lack of desire.

6. My iPad may be dying. Boo.

7. What is it with people doubling down on racism o.O There is a designer on Rav who makes really pretty stuff who is now on my never-buy list for being a total asshat. Short summary: she designed a shawl with a racial slur in the name, tried to openly circumvent the automated "no racist language" filter while mocking said filter, persisted in re-uploading it with problematic names, and is now claiming persecution.

Longer version, content warning for racial slurs (largely Rroma-related) --

Read more... )

Anyway, where was I...?

8. Duolingo streak is up to 933. Woo. I'm thinking of trying again to tackle German. (Advantage: I have some stuff already ingrained. Disadvantage: that stuff is from twenty years ago, so is wildly out of date as well as rusty. Also, Spanish, which I'm lazily refreshing, is more useful around here.)

9. My side K has never seen Princess Bride. I am making her watch it soon. I keep wanting to make references to it (we were talking about something the other day that reminded me of Vizzini logic, a "something is X and also not-X" type of joke argument; I do not think [thst word] means what you think it means; something being mostly dead) and then remembering she wouldn't get it.

10. I am also going to have her watch Into the Woods -- the good one of course, not the recent abomination of which the ONLY redeeming value is Chris Pine's Shathering in "Agonny", and I still can't fucking believe they didn't include the reprise augh -- but that's less urgent. Also I don't actually own the DVD of it. Yet. I look for it at every library book sale (they have dvds and cds as well as books). One of these days it will be mine ... mwahahaha.

...what

Mar. 16th, 2019 06:15 pm
ysobel: (easily distracted)
At one point today I was relating an anecdote about badminton, but couldn’t remember the word. So I said "what's the thing that's not tennis?"

Scarily, my friend suggested badminton right away, which is good because I had forgotten "shuttlecock" also, but half remembered it, and I'm pretty sure "where you bat around a floaty rocket chicken" would have helped.

...

...yeah.

(I'm totally fascinated with both momentary-word-forgettery and the linguistic thing where "the thing that's *not* X" conveys "but is similar in some ways". Because technically everything other than tennis is "a thing that's not tennis" but only a few things can be relevantly described that way; badminton, ping pong, maybe volleyball?)
ysobel: (Default)
I - a poem

my bed smells of me
but more of pee and despair
this is my life now


II - not a poem

Right now I have one aide working three shifts and one aide doing everyfuckingthing else.

I am trying to find more.

I have been trying for a month.

I have done all of two interviews. One was scheduled to show up that night to watch the procedure, and just ghosted. The other watched and got some training and ... then texted me that she'd found a job closer to her and she was very sorry and also very grateful to me for having given her the opportunity.

III - an unrelated realization; or, the accidental diet

Content warning: eating patterns and diets and stuff.

Read more... )

IV - a poem written by my smoke detector

beep beep beep beep beep
no (beep) smoke (beep) just good fun
beep beep beep beep beep
ysobel: (Default)
chair is still not fixed

don't have aides yet (and the one that's quitting has her last shift wednesday, plus the one that isn't having cataract surgery in the next couple weeks)

my brain is alternately BSOD-ing with anxiety and diving into defeatism and suicidal ideation

(disclaimer: I am physically safe & have a support team. but sometimes I just want to give up and let the brainweasels win)
ysobel: (Default)
Monkey has just upped her cuteness level.

At some point in the last year or so she started sleeping on me sometimes at night -- sometimes I'd be in bed and she'd climb onto my stomach and snuggle down, warm and purring, and put her head tucked against or on top of my hand or wrist. Even when I was technically interrupted in the middle of doing something on my iPad, I wasn't upset at the blocking; I'd just lie there being a self-heating cat bed, like making her comfortable was the only priority I had.

(And sometimes I'd wake up in the middle of the night with her on top of me.)

Within the last week she's started using my hand as a chin rest, with my right thumb under her chin and her face kind of buried in my fingers. Which meant if she fell asleep I could feel every sleep-twitch of her whiskers, every eye flutter as she dreamed, every tiny little movement. It feels somehow special, almost sacred, having her trust me enough to fall asleep on me.

Tonight, after doing that for a while, she stretched, groomed her face a bit, and then settled down in a shifted position ... and curled her paw around my left thumb, clinging to it like a teddy bear.

February has mostly sucked, but tonight almost compensated...
ysobel: (Default)
Pretty sure the universe hates me right now.

Point: my chair is semi broken. Last week I went to go somewhere and *couldn't get out of the van* because motor 2 was disconnected. It took 45 minutes and two (strong) people to get me out -- luckily once I got back inside, the chair started behaving again, but I am afraid to go anywhere in case I get stuck, either in the van again or outside someplace. The theory is that something in the right-side motor is loose/worn enough that the disengage lever slips out of fully locked. (Which also means it's totally unrelated to the joystick falling off earlier.) They've ordered new parts but this tends to be the sort of thing that, based on delivery times, is handmade by Tibetan unicorns in the light of a full moon and then shipped via narcoleptic yak.

It's been a week, and so far I've missed a book group discussion that only meets every other month, reiki, choir rehearsal, soul collage, and I forgot what else but fuck. Also all three pets had vet appointments, so my aide had to go be my proxy.

Point: my brain feels like it has somehow short-circuited because stress and because I don't know if the chair will die completely or when it will be fixed. i can't focus on anything or do anything or ... anything.

Point: the aide that was leaving at the end of the month? Apparently the other client needs her sooner so as of Monday she can't work for me in the afternoons. She's still doing her two morning shifts through the end of feb, but not the three afternoon ones. I found this out tonight.

Point: the power went out at around midnight and stayed out for two hours. Something was beeping. My bed (alternating air pressure mattress) requires power. My cpap requires power. My fan requires power. Too hot and uncomfortable to sleep. And I couldn't even distract myself with Netflix because internet requires power (and while I do have videos on my iPad, I didn't want to drain the battery down and have nothing, if the power stayed out). I got the cpap hoses disconnected so I could breathe (it is very awkward and stifling to try to breathe through the filters and stuff when it's unpowered) ... but then when the power came back on couldn't get it connected again (partly hecause the hose attached to my face mask isn't quite long enough for me to hold well, partly because I can't bring my hands together) so I had to wake my roommate up. Which is, granted, one of the reasons she's here, but I still hate doing it.

Point: it is ::squints at clock:: 3:30 and I am not asleep and my brain doesn't want to go to sleep (it's like a very small toddler, just less mobile). I'm also hungry and craving sugar, but I haven't figured out a way to eat stuff in bed, and anyway shouldn't be having a lot of sugar, though I'm thinking of saying fuck it and just gorging on chocolate tomorrow, because who fucking cares if it's healthy, give me all the sugars.

Fuckadoodle

Feb. 1st, 2019 02:39 pm
ysobel: (fail)
Fuckity fuck fuck.

This morning I got up and got in my chair and -- snap! -- the joystick broke

(Not the joystick itself, but the mounting bracket -- because I can't reach the armrest, which is where wheelchair joysticks normally live, I have a bar that brings the joystick more in the middle, and there is a bracket that clamps onto the bar to hold the joystick at the right angle. The joystick is still attached but it doesn't stay up, just flops out of my reach.)

Luckily my morning aide -- *not* the aide of very little brain -- was able to hang around for a few hours and do things like hold the joystick where I could reach it so I could go out and eat breakfast, or prop it up with a neck pillow.

I called UnMotion and they offered to send someone out on Monday. Not acceptable. They said I could bring it in this afternoon. Annoying (it's not close, plus going from here to sac on Fridays is horrible because of mountain weekend traffic) but better. They also did a service thingie using an app that lets them access my camera, so that they could figure out if they had the right part. They were supposed to call me back and let me know whether or not to come in (because if they needed to order a part, there'd be no point in going in).

Which of course they didn't, because they suck.

I eventually -- after lots of calling the service department with no answer -- got ahold of someone at reception who was very nice and helpful and walked over to the warehouse to find out.

(The answer was they think they have what they need, can't guarantee it without having the chair there but I should come in.)

And of course a) I couldn't tilt back without the joystick flopping onto my stomach, so I'm deeply uncomfortable; b) driving the chair is hella awkward and my shoulder is probably going to hurt tomorrow; c) my anxiety is ratcheted sky-high because of all this, which makes being in freeway traffic minor hell (but at least I'm not driving); and d) I was going to get to have a knitting friend come visit and I had to cancel. :((((((

Edit: 3:51 and I'm out. Fix took five minutes. Once they found the right piece.
ysobel: Pink bunny (bunny comics), holding a sign: "jesus save / cthulhu eats"; text: choose wisely (choose wisely!)
It is kind of boggling just how bad white people -- and I am including myself in that! -- are af discussing racism.

There has been a ... thing ... in the online community, beginning with a kerfluffle where a (white) blogger posting an enthusiastic but badly phrased thing about traveling to India, and leading to a very important discussion about racism, both in general and in the knitting world both online and off. The discussion itself is kind of complicated and multi-platform (bouncing between blogs and Instagram and Ravelry and Twitter and who knows what else) and it is bigger than the blog post about India but the blog post, and peoples' reactions to it, are depressingly enlightening. Because from white peoples there has been a lot of "oh, she didn't mean it in a racist way" or whitesplaining hoe it wasn't actually racist (because intent is totally magic) or "some people get upset about anything these days" or "my friend from India didn't think it was a problem" (because people from India are a monolith?) or whatnot. And in the larger discussion, white people going "I can't even open my mouth without getting jumped on and told I'm evil" and ... well. Stuff.

And I'm not immune. I had some of the same initial thoughts. Wanting to find ways to explain the blog post in a non racist way. Thinking, before I was aware of the depth of the conversation (I had seen only a piece here and here without the larger context) that it was an unnecessary kerfluffle rather than something of deep importance, and not bothering to look deeper. I didn't say any of it, but I thought it, because ... ¯\_(ツ)_/¯

Whyyyyy.

(Rhetorical question. Yes I am familiar with the concept of white fragility and stuff. Don't really want to get into that here, which I know is a reflection of privilege -- I can distance myself from racism discussions in ways that POC, especially BIPOC, can't -- but eh.)

And some of the stories of BIPOC and knitting racism have boggled me equally much. People being harassed and/or ignored in yarn stores, or asked if they're sure they can afford that yarn; featured designers being largely white, and models ditto; BIPOC people feeling unwelcome in a community that purports to be inclusive. It makes my heart sore that the yarn community is as racist as it is, and also that I was so deeply unaware of it because it didn't affect me; and at the same time I know that how I feel about this is less important than the perspectives of those being actually involved.

I wish I could make a promise that I will be as anti-racist as I can, except that I know that I will fail. I wish I could make a promise that I would react with grace and honest apology if called out for racism that I speak or perpetuate, except i know I'm more likely to make an ass of myself, because white people suck st this. I wish my wishes and unspoken promises actually changed anything, but ... I'm not really that important.

More WD

Jan. 5th, 2019 03:59 pm
ysobel: (Default)
Omg this is so WRONG

Read more... )
ysobel: (Default)
Halfway through the first episode -- stopped for time only -- and it seems decent but the purist in me is screaming a bit.

Read more... )
ysobel: (Default)
::looks at cast list for the new Watership Down::

So... x-men plus Star Wars and a pinch of doctor who? ;)
ysobel: (Default)
(See previously tagged entries for explanation)

"float"
ysobel: (Default)
I seem to be in Crud Relapse... I was mildly sick with lung congestion, then seemed to be getting better, now I'm pretty sure there's a hedgehog shoved ass-first into the lower part of my sinuses (adenoid area). Rather like this:

Read more... )

It's less fun than it sounds.

::sulk::
ysobel: (Default)
The last few nights I have been ... super exhausted. More than usual.

I tend to go to bed on the early side (usually around 6 or 6:30 when I can) but that's comfort as muchas anything else -- my tailbone and back and hip are all quite cranky by dinner time. Bed is comfy. I usually spend a few hours doing stuff, either Netflix or games or reading or coloring or browsing Ravelry, before going to sleep.

(This is of course crappy sleep hygiene but I don't fucking care. Especially since I listen to music going to sleep, to keep anxiety nrainweasels at bay, so can't just ditch the tablet.)

Normally I will go to sleep -- or, at any rate, stop faffing about and lie with my eyes closed listening to music -- starting around 11 or so. On bad anxiety nights it can be more like 1 or 2. Sometimes it feels like I'm trying to get a toddler into bed, except the toddler is in my head; no matter how tired I am, my brain just does not want to go to sleep. I think a little bit of it is finally being comfortable (I can do more in my chair but it's constant discomfort at best even when it's not bad enough to be pain), and some of it is not wanting to dream (I can have some high-anxiety dreams), and some of it is not wanting tomorrow to come quite as soon.

Night before last, I couldn't keep my eyes open, so I decided to listen to audiobooks. I was listening to a new one for maybe half an hour before I started losing track -- when I'm drifting off to sleep I will have gaps where I'm not aware of a loss of focus but the audiobook skips ahead without warning -- so I switched over to watership down, which has become my default going-to-sleep book. (The narrator has a soothing British voice, I know the story, it's very compartmentalized (in the sense that A happens and then B happens and then they tell a story and then C happens and then they tell another story, and it sometimes refers back or makes connections but mostly things are very separate, which means if I miss a portion I don't feel too lost.) My idea was to put it on a one hour sleep timer, which would get me to around 9, and then I'd switch over to music and go to sleep properly.

I didn't make it through the hour. I made it maybe 15 minutes.

Mind you, Saturdays I usually sleep in, with my aide coming around 11. And I did *not* wake up before she got there. So that means I was sleeping for about 15 hours? I mean, I woke up here and there during the night, but mostly asleep.

And then Saturday night I was super tired. Again/still. And my eyes hurt. Again/still. So I rewound WD to the last bit I remembered (before hazel and fiver went in to see the chief rabbit) and listened a bit, then switched to music. Probably asleep by 9 or 10.

Sundays are a day when no one wants to work mornings, and the one willing aide has a client she works with until noon or so, so unless I can wheedle someone into working, I get up around noon-thirty. Most days I wake up earlier and do iPad stuff until she gets here. Today, I was still solidly asleep. So again, somewhwre around 15 or 16 hours. It was a bit happier -- there were at least two times when I was awake enough to put on music to go back to sleep -- but still.

Usually, Sunday nights I'm pretty perky, as far as these things go, because usually I've gotten enough sleep. So I usually spend several hours doing stuff on the tablet before sleeping. ...tonight? It's 9 (well, was when I started writing the entry), my eyes hurt and don't want to stay open, and I just want to go to sleep.

...

I don't know how much of this is from the shitty air we've been having (fingers crossed that we actually do get rain this week!), how much is fighting off some virusy thing that I don't otherwise have symptoms of, how much is depression (except sleeping lots isn't among my usual symptoms), and how much is whatever. (I have a mosquito bite on my finger, clearly I therefore have Ebola or something, right?). But it's just ... weird.
ysobel: (Default)
Me: I don't do much at all. It's kind of pathetic.

Other people, coming up to me: wow, you do so much!!!!!111

Um. How am I not in the same reality?

Woo art

Nov. 6th, 2018 02:04 am
ysobel: (Default)
Also posted to my instagram ...

Mental health artwork, positive for a change:

Read more... )

The brainweasels are being held at hay -- bro for lack of trying on their part -- by the sheer amount of birthday love floating around me. I still don't quite feel entirely person-y, hence the light grey aspect, and I don't know how long this will last, but for now I am actually okay.

Which is a kinda weird feeling...

Birthday!

Nov. 4th, 2018 11:42 pm
ysobel: (kitty with fish)
So I turned super duper old 40 today.

Way back in The early parts of this year I decided I wanted a party dammit. Partly because decade, partly because 40 is the median age of death for people with FOP (and even though there are people in their 60s and 70s with FOP, there are also people I've known who were younger than me when they died, so even though it's median and not mean or mode or an expiration date, my brain gets a bit weird about it.

Given how bad the depression has gotten lately, I really needed it.

And -- in part because of how much I've been actually being open about the depression stuff -- there has been Much Awesome over the past few days. Two stuffed penguins, a super soft huggable stuffed frog, earrings (Latvian amber!), a couple of shirts (including a nightshirt with sheep on it that says "let's snuggle"), a pashmina scarf, flowers, balloons, more balloons, visits, hugs...

My old roommate came and she flew in yesterday, so came by both yesterday and today to hang out. Yahtzee was thrilled, Monkey was indifferent (but then when no one was looking, curled up in her bag), and Loki was ... very very confused, I think. Old roomie gave him snuggles and he just lay awkwardly with this "mom what is happening" expression. Poor kitten.

And the party! There was a little mini concert, some by the ukulele band (which I would totally be tempted to join if I could physically play) and some by the church chamber choir. It was awesome and made me happy. And then food! We got it catered (although apparently the catering restaurant neglected to mention that they weren't open on Sunday, so I found out afterwards that the person arranging the party had to pick the materials up the day before, raw, and she and her husband (who both have catering experience) cooked it up, which I am super impressed by) and very yummy and there was baklava for dessert, which I got to take the leftovers home. And there were maybe 50-ish people there, friends and singing friends and church friends and knitting friends and all kinds of people.

My dad was there too, which slightly surprised me because he usually avoids being around my mom in close proximity, but it was awesome, and nothing embarrassing happened. ..well, good embarrassing happened, when they started on the speeches about how much like me and why, but nothing parentally awkward.

...I do have a huge pile of cards to go through (this is a good thing, but physically exhausting) and I suspect I am going to crash hard tomorrow, because the last few nights have been bad sleeping-wise (last night I was up until 1:30 at least, and I don't know if it was the first or second one) and today was like 100% social with several hours of about 200% social on overdrive. And I'm winding down finally but have the hiccups (gah) so no clue how long that will last.)

My brainweasels are starting to kick in also -- e.g. trying to get me to feel guilty about Yahtzee not being there (I didn't bring him partly because of my sister being allergic, though she ended up getting sick -- as one often does when one has little kids -- and not coming, and partly so I wouldn't have to spend part of my attention keeping him from begging or stealing things that drop. (He's trained, but tri-tip is hard to resist.) But some people were expecting him to be there...) or about the catering thing (which is probably why I didn't find out until after, lol) But most of today they've been quiet, suppressed by the avalanche of love.

Anyway. Good birthday. A+ would party again. (...just not tonight...)
ysobel: (easily distracted)
One of my groups elsesite was talking about what people were consuming media wise, and I figured I'd dump it here for posterity and in case anyone is interested.

Watching: just started The Good Place. Also want to watch Elementary (which I saw a season of and then got behind because Hulu would only show the most recent five episodes and I was six behind and then got behinder). Recent watches: Blazing Saddles, Over the Garden Wall, occasional episodes of Nailed It!, and rewatches of Mulan and emperors new groove and lilo and stitch.

Reading: between books right now. Last one was Kate Morton's The Forgotten Garden. Right now I am doing way too much mindless reddit-ing.

Listening to, words: I'm a bit behind on my podcasts (wait wait don't tell me, sawbones, sword and scale, radio ambulante for when I'm pretending to be serious about Spanish). Also a bit behind on audiobooks, haha. Mostly I've been listening to watership down (especially at night) because a) I know the story so it doesn't matter if I fade in and out, and b) I find the narrator very soothing. I have (mumble) hours of unlistened-to books, but I mainly remember to do audiobooks when I'm in bed and trying to sleep, which makes it hard to listen to new things. For meditation, I love Headspace but most of it is subscription based ($13/mo or $95/year) and I am weirdly reluctant so I just do Insight Timer instead.

Listening to, music: nothing new. Joseph and the Amazing Technicolor Dreamcoat, Secret Garden, Scarlet Pimpernel, Phantom of the Opera in German or sometimes Japanese, Chichester Psalms, Pictures At an Exhibition, 1812 Overture, New World Symphony, Beethoven's 6th, the violin concertos I played (Vivaldi and Bach and moxart and Mendelssohn and Bruch), Tchaikovsky and Dvorak serenades for strings, soundtrack to the Wrath of Khan.

Apps, games: merge dragons, word bound (which is a word-guessing game where you're given a set of letters to choose from and the word length, and you guess a word and it indicates which letters are correct and which letters are used but in the wrong place; kind of like Mastermind with words instead of colors or numbers), word cookies (finding all the words made from a set of letters), faraway and its sequels (puzzle game), link 2 power (combine numbers, similar to but not quite like 2048), happy glass, seaport

Apps, other: daylio (mood and activity diary thing, with the option of multiple entries per day), duolingo, walk for a dog (supposedly gives money to an animal shelter of your choice based on how much people walk), GoodReader (pdf reader and annotation of awesomeness)
ysobel: Artwork of a curled-up stick figure trying to stave off crushing darkness (depression)
There is a trope common to both horror movies and creature-features where the protagonist(s) huddle in an enclosed space like a room or car, and the bad thing -- axe murderer, zombies, demon, evil force, velociraptor, mutant wolf-rhino-mammoth hybrid, whatever -- is very definitely outside. Maybe it's crashing around in brute-force attempts; maybe it's rattling doors or windows, looking for a way in; maybe there's just slow ominous footsteps as it circles.The protagonists do what they can -- locking doors, bracing with their bodies if necessary, barricading entrances -- but they know, and the viewer knows, that it is only an illusion of safety. That they are at best trapped; that it's a guaranteed inevitability the thing will find a way in: a forgotten coal chute or a high window or a weak spot, or just waiting until the protagonist is sleeping/distracted, or ... eventually, somehow, it will get in.

That's how my depression feels right now.

Last night? At the first whiff of I-hate-myself thoughts, I said "not today" and barricaded the mental door. And it worked -- for a whole five minutes. Like some malevolent force in a horror movie, it just doubled down. Tripled. Quadrupled, maybe.

Inevitable.

I started the night watching a Netflix movie as distraction, figuring I'd get sleepy halfway through. I didn't. The middle of the night downgraded to random Facebook videos in a desperate and futile attempt to avoid the crying meltdown that broke at around 4am. I eventually listened to an audiobook for long enough to calm down and sleep for what remained of the night.

I am ok in the sense that I am not in any danger; in most other senses I am not ok. Just good at pretending otherwise.

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ysobel: (Default)
masquerading as a man with a reason

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