#curseblogging

[scribefindegil]

Types of brain fog:

Brain is primordial sludge & you are drowning in it

U are a ghost and nothing is real

Mental equivalent of attempting to stream some high-res video game when all you have is dial-up

The thing you want to articulate is *right there* but you're just scrabbling at it like a cat continually failing to catch the bird on the other side of the window

The Void

#curseblogging

[scribefindegil]

A useful article from King Arthur Flour (my beloved) on baking while disabled.

#curseblogging #i already do some of these but there are others it would be good to keep in mind #also i really really need to get my KitchenAid fixed

[scribefindegil]

Do It From The Floor has genuinely been a game-changer. Like, obviously it does not help if I have to be in public, but that matters less because I can't really go out much for other reasons. But realizing that I can just lie down on my friends' floors but still participate in Socializing is a big deal! I can't sit for two hours of folk singing but I can mumble along from the ground! I can't be at the table for a whole game session but I can be on the floor under it! I can't make it through a whole celebratory meal but I can still participate from the dining room floor! It is VERY pathetic but sometimes you've just gotta embrace the frail and pitiable invalid lifestyle. From the floor.

#curseblogging

[scribefindegil]

*grits my teeth*

Do It Slowly

Do It Badly

Do It Piecemeal

Do It From The Floor

Don't Do What Is Not Necessary

Find The Core Of What You Want To Accomplish And Don't Let Go

#cried enough about the d&d campaign that we're trying to make moves towards resurrecting it #i will dig this story out of its grave with my teeth #somehow #curseblogging

[scribefindegil]

A lot of being disabled is trying to pin down where an activity falls on a scale from

I can't do it. It is physically impossible.

I can't do it without endangering myself.

I can't do it without making my symptoms worse.

I might be able to do it but I also might not and I won't know until I'm in the middle so it's better not to commit

I can do it but it will use up my energy for the whole day.

I can do it but only if someone else helps me

I can do it but only with significant accommodations/ changes to the environment

I can do it for brief periods of time

I can probably do it

I can definitely do it

And there's often no consistency; the same activity can be at wildly different points on the scale depending on the day!

#and there's also the process of 'i can't do this the way i used to; i might be able to find another way but i have to totally re-learn it' #and 'this might be possible with accommodations but i have not figured out what those accommodations *are* #nor do i have the energy to think about it' #curseblogging

[scribefindegil]

My problem is that I actually adore tedious and repetitive handwork I just can't do it anymore, but I never know about the energy-saving options bc for most of my life I've done things the hard way on purpose.

#i'm the kind of weirdo who genuinely enjoys whipping cream by hand #how could nature do this to me :/ #curseblogging

[scribefindegil]

Attempting an activity for the first time post-curse and discovering all the steps that are secretly huge energy drains but I never thought twice about when I was able-bodied. Some tasks are obviously hard/impossible but some really sneak up on you. For example: can I knit this hat for my new nibling? Probably! Can I do the preparatory step of winding the yarn into balls? I sure hope the answer is "yes, eventually" but in the meantime I am Suffering.

#curseblogging

[scribefindegil]

the balancing act between "I am still a whole person and I have value no matter how sick I get and I will find ways to be happy despite the curse because I am too stubborn not to" and "okay, but it really fucking sucks though. like it does just suck super hard."

#curseblogging #i find the chronic fatigue support/advocacy communities exhausting and unhelpful #bc of how much focus there seems to be on how this illness ruins people's lives and takes everything away from them #and living with it is nothing but misery #it's a bad and unhelpful framing for me. #but also #they make some points #it DOES suck

[scribefindegil]

"I just don't know what to do with myself when I'm feeling so well!" <-idiot who is "only" experiencing 4 levels of D&D exhaustion instead of ser usual secret level 5.5 where all ability scores get drained to 2

#curseblogging #unfortunately above level 5 i start being exposed to psychic damage again (The Mental Illnesses) #so it's debatable if it's actually an improvement

[scribefindegil]

the thing about my disability that fucks me up the most is not the disability itself, but the knowledge that I need to convince the government that i'm completely and utterly helpless if i want a chance to get benefits, and so every time i have a slightly better day instead of enjoying it i become paralyzed with terror that someone will use anything i accomplish as proof that i'm not really sick

#curseblogging #one of those things where the extent of it is irrational #(social security is not going to find my ao3 account and deny me benefits because i posted stories while i was bedbound) #but the root of the fear is not

[scribefindegil]

once again mad about how applying for disability is like "oh you're too sick to complete tasks? complete this long string of extremely complex tasks. if you don't do it perfectly we will reject you. if you *do* do it perfectly we will probably still reject you. you can expect to hear back from us in between one and three business years. what are you supposed to do in the meantime? idk not our problem."

#curseblogging #finally got a response to my application after 11.5 months . . . asking me to fill out the whole application again #but longhand this time

[scribefindegil]

got another (genuinely well-meaning! which is why I'm making a vaguepost here instead of Biting) person doing the "But are you SURE you're not just depressed?" thing and

Yes.

I'm sure.

I have been depressed They Are Not The Same

Dismissing every disease we don't understand as baseless mental health hysteria is one of the big contributing reasons we don't have any fucking treatments for things like this

But ALSO

people whose depression is so bad they can't get out of bed still deserve support!

Like the "oh you're just depressed/anxious" thing pisses me off so much because the people who do it are not interested in helping people with poorly-understood physical health issues, but they are ALSO generally not interested in helping people who have actual anxiety or depression. They're just the scapegoat conditions that are treatable/trivialized enough that it's easy for people to turn anyone's struggles with them into a moral failing.

#curseblogging

[scribefindegil]

That post that's like "Government benefits are what happens if you take the 'If you're too sick for school, you're too sick for video games!' mindset to an institutional level" is SO true bc the crisis I experience every time I'm capable of getting out of bed is basically "Fuck! What do I do if I'm no longer too sick for video games!?!"

#me after only needing to lie down on the floor in exhaustion for *part* of the time i was hanging out with friends: #but how will anyone believe that I'm not able to work!? #curseblogging

[scribefindegil]

screammmmmmmmm

#me: okay i had to do a Terrible Official Thing this morning but it didn't go as badly as it could have and now i can rest- #The County: hey jsyk you're over the asset limit. yeah the one we never told you about? #you have too many dollars so you don't get benefits anymore :) #yeah like 80 too many dollars specifically. significantly less than 10% of a single month of rent. #clearly this means you're rolling in the dough and you don't need any help :) #anyway i am going to bite someone #curseblogging

[scribefindegil]

I've been here for a lot of "Is this the beginning of the end of Tumblr?" scares, but the difference is that all the others happened before I got sick. Since the curse, this site has become a lot more load-bearing for me because a lot of the time I don't have the energy for anything besides scrolling the internet, and this is one of the few ways I've managed to stay connected to people despite being severely disabled. I definitely don't have the energy to figure out how to use any other social medias.

I know it's not vanishing overnight, and I'll be here until it's physically impossible to post, but man. It feels a lot scarier this time.

#:/ #curseblogging

[scribefindegil]

Been thinking a lot this month about disability (in real life and in fiction). Disability Pride Month coming right after Queer Pride Month feels very disorienting I think, because despite the marginalization that comes with it my queer identity is characterized by such a deep and profound joy, whereas my disability really does just make things bad for me. And especially as someone the social model doesn't particularly apply to--we could live in a perfectly accommodating Utopia and my fatigue would still keep me in bed for months at a time--there's not really any "pride" there and I don't know that there should be. But I'm trying to think about acceptance and neutrality, and what it can and does look like to see myself and characters like me as just . . . a way that people can be, with no value attributed to that.

Disability is morally neutral.

Disability is narratively neutral.

Disability is not a punishment.

Disability is not a tragedy.

Disability can be part of a character's happy ending.

Disability cannot be avoided or cured by being sufficiently virtuous.

Becoming disabled usually involves some level of grieving. As with all grief, this does nothing to preclude future happiness.

#curseblogging