ysobel: (Default)
Why is my brain. Seriously.

7pm: hey it’s bedtime ... you know you want to sleep ... here, I’ll help ... zzzz

9pm: oh hey we’re in bed, time to DO ALL THE THINGS

11pm: I AM NEVER SLEEPING AGAIN

the following morning: ughhh what was I thinking, must go to sleep sooner tonight

afternoon: so very groggy mehhhh can't wait for bed

7pm: hey it's bedtime ...

...

Every. Single. Fucking. Day.

The stupidest thing is I can’t tell if I’m groggy in the daytime because I’m oversleeping (and therefore would be better off trying to stay yo later to get less sleep) or undersleeping (and therefore would be better off trying to confiscate my own iPad at night). or if it's entirely just fucking meds.

Well, no, that’s the second stupidest. The actual stupidest is being tired until I get in bed and then being wide awake. Wtf is that anyway. I mean, it’s not just a matter of “bed is more comfortable so I choose to spend the last few hours of my day on bed”; I actually end up half falling asleep on my aide while they’re putting me to bed. And then am awake. Because that makes so much sense.

It used to be that 10 was early for me to go to bed -- and now I wilt by like 7 or 8. Until I'm in bed. But I think I'm still really half wilted, because I think my body needs to be in bed even when my brain isn't ready, but I dont have any stamina any more.

And I think it would be a bit different if I could get in and out of bed by myself, or if I didn't have someone coming at a fixed time to get me up on the morning, but the whole thing is just ,,, frustrating and I don't understand it way.
ysobel: (fail)
News at 11: isa is a fucked-up-in-the-head insecure clueless little penguin with many issues that are deeply entrenched.

Bonus news: prednisone doesn't actually make these things better.
ysobel: A bunny (bunny comics), on fire (on fire)
I am having stupid fucking nostalgia about who I used to be and what I used to be able to do

...someone today introduced me to Vitamin String Quartet, who are fucking awesome, but one of their covers was something from Phantom of the Opera, and even though I've listened to it bunches of times, usually in German, something about their arrangement tugged me back to hearing it in person; POTO was something that my college bff and I bonded over, as well as the second thing I really got involved in the fandom for (and that was kickoff to getting involved with Buffy fandom and it was all "downhill" from there), but also there was a non-touring production in SF that we went to at least 15 times in our four years because SF was close enough for an evening trip and because the theater wasn't entirely wheelchair accessible (no elevator) so they had to give us wheelchair seats (back of the orchestra) for the cheapest price because we couldn't get to the nosebleed seats, and if you give two POTO-obsessed teen/twentysomethings the opportunity to see POTO regularly and cheaply they're damn well going to take it

so emotional dump back into when I could move decently much and still still do things and when I ... I mean I had depression for 3/4 of the time and it was new and baffling and difficult, but not the trudging through life feeling of unending depression; back when I could still write and still do cross stitch and still thought I had the opportunuty for a job and a life and stuff

and I wasn't prepared for this at all, and now I can't stop crying at how pathetic I am now and his small my life has gotten
ysobel: Artwork of a curled-up stick figure trying to stave off crushing darkness (depression)
...am currently okay in that I am none of the following: dead, undead, hospitalized, injured, comatose, lycanthropic, abducted by aliens, abducted my pirates, abducted by alien pirates, hallucinating, hallucinogenic, poisonous, venomous, psychic, psychotic, telepathic, telekinetic, pyrokinetic, folded, spindled, or mutilated.

however I am not okay in that the brainweasels are out in force, and as many of you know, they are very hard to fight, especially when swarming. And they're swarming hard.

(Therapist says I'm not just anxious but downright scared. She's ... not wrong. The hand thing is a trigger, because my hands are one of the few mobile bits I have left (and I remember something from when I was maybe 14 or so where I learned that worst case scenario with FOP was that you were stuck as a human statue able only to wiggle your fingers, and somehow what I held on to from that was that whatever happened I would always have Paris my hands, which turns out to be about as useful as saying that whatever happened I would always have my brain) and because crochet, which requires some amount of dexterity, is one of the few hobbies I have left (aside from Netflix marathons, which ... is not much of a hobby) and I'm scared not only of what will happen with my hands but what the rheumatologist might say. And I'm scared of being trapped in my body with nothing to do, and I'm scared of being more of a burden than I already am.)

(Therapist says she's never seen me like this. She's not wrong there either. I'm usually better at appearing ... I don't know, logical? detached? practical? ... about the whole being-a-burden thing or whatever, and this is just a window into pure fear.)

We have a meeting scheduled tomorrow, me and her and my dad, to talk about ... stuff, including maybe getting me a wireless/Bluetooth/something headset for computer dictation, but as much to let him know what's going on as to come up with solutions for stuff. Beyond that, I don't know what the plan is.

So if I'm not around much or whatever ... Well, see the first two paragraphs.
ysobel: (Default)
Network page linkhopping led me to http://musingsofanaspie.com/2013/01/31/emotional-dysfunction-alexithymia-and-asd/ and, uh.

Because, I recently realized, I don’t discriminate between anger that is aimed at me and anger in general. When someone is angry, I invariably feel like I’m the cause or the target, even when I rationally know that I’m not.

If The Scientist calls me after a bad day, I hear how upset he is and immediately feel distressed. Not distressed as in “I should console my husband because he’s had a bad day.” I feel distressed in a “this is incredibly stressful and I want it to stop” kind of way. My brain immediately goes into “fix it” mode, searching for a way to make the other person feel better so I can also relieve my own distress.


...

...and I am sitting here going "wait, what, you mean everyone's not like that"

and, like, except for the 'impoverished imagination and fantasy life' bit I would totally be labeling myself alexithymic

because *there is a word for that*
ysobel: (attacked by a pencil scribble)
I have officially done Awesome Shit writingwise in the past three days. I am doing NaNoWriMo using three separate projects; Project A is a blogged autobiography thing, Project B is stories for Yuletide (assigned and treats), and Project C is miscellaneous other writing. Between the three of them I have gotten 5000 words so far, writing three out of three days. And better yet, I have actually written *and finished* two Yuletide treats, one posted to the archive already (fourth story in the collection lol) and the other too short to post yet but it's ready to go once the Madness archives open. And I have noted on my assignment, and fragments written of three other treats, as well as a list of like 35 more possibilities based on letters.

Let me re-emphasize this: I have *written and finished* two stories in the last three days.

I don't want to jinx anything, but starting with the poem I wrote a week or so ago? Not only has my creativity come back, but I even like what I'm producing. (Which is big, because the last few years, writing anything has been like pulling teeth, squeaked out reluctantly as close to deadline as possible and I've hated the end result.).

I very strongly suspect that this resurgence of creativity is not coincidental to the drug that I'm going off of (with psychdoc approval, don't worry). And if I can get my writing back -- if I can write, and have fun with it, and get stories out in a way that flows and feels good -- it is hella worth the fact that going off said drug is also giving me rebound insomnia.

Which is why I'm posting at 1:30am. Because hi, I'm pretty awake.

I am also having seriously ping-pongy mood swings in the last few days. Bouncing from "yay everything is awesome" to "I am a horrible person and woe and gloom" is ... quite frankly, exhausting. But I guess it's progress over constant copelessness.

It does, though, feel astonishingly vulnerable. Like the miasma of constant depression was somehow an armor or shell or something, and opening up more exposes my squishy innards.
ysobel: (Default)
A summary of my life over the last few months: Stuff sucked, more than usual )

I've spoken about the above things, although I can't remember how much was posted here, how much to Facebook, how much in other places online, etc. The next bit, though, is new.

State of the ysa now )
ysobel: Pink bunny (bunny comics), head cut open, completely hollow (no brain today)
Am quite tired. Apparently therapy sessions that involve a lot of crying and poking at deeply inrooted issues? Not an easy thing.

cut for stuff, but wanted to document )

...oh.

Mar. 30th, 2014 12:14 pm
ysobel: (Default)
So I apparently went through a phase in high school where I kept insisting I was half Vulcan. I don't remember to what extent I thought I was joking; my mom says I was adamant about it. It was more than just being obsessed with Spock (which also happened, because Spock is awesome), it was actually saying/pretending/believing/whatever that I was half Vulcan. (The sort that looked human, because no pointy ears here.)

Fast forward to today, when my TNG rewatch continues, and I get to the episode Hero Worship, wherein a human kid that survives a traumatic incident that kills everyone else on his spaceship basically imprints on Data and starts maintaining that he is an android, and talking/acting as though he is. The show is not really very subtle about the whole "androids can't experience emotions, he wants to escape his fear / terror / bad memories / trauma, being an android allows him to do that for a while" thing.

And something clicked in me. Because Vulcans are (at least in theory) good at *suppressing* emotion, and replacing with logic, and while they tend to be imperfect at it, there is the whole theme of struggling to overcome emotion. And I was at the time dealing with a whole bunch of shit -- high school is stressful, puberty and associated change is stressful (even though I didn't have any sexual complications going on), surgery and chemo and similar things are stressful, scary untreatable progressive medical conditions are stressful -- and ... yeah.

Huh.
ysobel: Pink bunny (bunny comics), head cut open, completely hollow (no brain today)
So last night -- after going to bed, before the realization of having forgotten my meds (which in turn was before the knee agony that was so bad I ended up hooking the lower half of the sling back up to the lift and using that to support my legs so that there wasn't any pressure on my knee, which felt amazing once I was past the hour of recovery period where my entire leg was twitching from the pain and stress -- okay, that got long. Starting over.

So last night, I got into a sort of depressive funk that involved a lot of crying and also a spiral of, well, content warning: depressive thoughts and suicidal ideation, but don't worry it has a happy ending )

A proper story ending would have me drifting easily off to sleep afterwards. It didn't happen, for reasons described in the tangent in the first paragraph. But I felt better.

I don't know if I can ever duplicate that again, but it was sort of ... fascinating.
ysobel: (Default)
I have at least learned enough to (most of the time) realize that running out of cope is not my fault.

Training a new aide, and she keeps being convinced that she can do transfer maneuvers when she (thinks she) understands them, but understanding and doing are two different matters. Yesterday morning we got me on to the toilet ok, but couldn't get me back to the chair, and we ended up having to call someone to come help. She came last night for additional instruction; she was supposed to come this morning with a person that could be backup, but she decided after last night's session that she "understood" it and showed up alone. While she did have a better understanding of what to do, it ... wasn't enough. And we had to call one of my other aides, and wait for her to get across town, and by that point my foot was asleep, and so I couldn't really do much to help out with the transfers.

Yesterday I was perfectly able to cope. I knew, even if she didn't, that it always took aides a few days to get a good handle on the transfer. (My body is so very different than anyone else's. See also: the easiest way to pivot me upright when I am leaning back is to push on the back of my head. Neck and spine are thoroughly, solidly fused, and so that gives good leverage and doesn't hurt me. It's counter-intuitive, though.) I was able to stay cheerful, more for her sake than anything, and patient, and very "we will get this" levels of upbeat.

Today, less so. And now one of my other aides is here, and cleaning up, and I know that stuff needs cleaning up, and I want to have an organized space, but there is still a part of my brain having a "DON'T TOUCH MY STUFF" meltdown, and with yesterday's and today's stuff on top of the consistent feeling of augh, I am very very low on cope.

And in the past, being out of cope has led to being out of self-cope; to irritation that I can't just grin and bear it, or to the nonlogic that since I dealt ok with things the last time X happened I should be able to deal with them now and it is a horrible flaw and personal weakness that I wasn't.

Today, somehow, I am managing not to feel that way. Just to sit with my inner toddler and kind of cuddle her, and I don't have to make impossible promises, like "everything will be better tomorrow" or anything, just kind of *be*.

I think this is progress.

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masquerading as a man with a reason

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