#progressive disability

cant transfer yourself to wheelchair? now u have to schedule carers every time u might want to move from chair to bed or toilet, have to staff these shifts, sacrifice your alone time/comfort/independence, teach them how to safely transfer u, remind them every time, purchase and maintain expensive equipment etc.

can't pee or poo in the typical way? have to do lots of steps for catheter use or bowel program or ostomy care. have to take special meds. have to travel with medical equipment, wipes, etc in all your bags now. have to buy and store it all too. have to deal with all the ableism from people about this too

I was supposed to do so much. I thought I was going to have time. I was supposed to raise my next service dog. I was supposed to still climb mountains and hike trails and see so many things and I might not get to do that.

How do I explain the crushing grief of what im losing when its not there yet, because I cant get to it all before it goes? Because doctors have looked at me and told me "yes, this is all but confirmed and we dont believe its anything else and we cant do anything for you except make you comfortable while you decline."

I was supposed to be a firefighter. I was supposed to spend my life saving lives at my job w/ harm reduction. I can barely get through the week most of the time anymore.

This isnt fair.

I thought id accepted it. But nothing in my life is setup to accept the changes that are happening every day. And when you cry enough times as a disabled person people eventually get tired of it.

I still cant even get a basic form of pain relief or a muscle relaxer.

would always bring home nectarines and then he would

put them in brown paper bags on the counter,

wait for them to get ripe

and then put them in the fridge so they could be cold too

sweetness and temperature were not mutually exclusive

My dad is still pretty great, but I live far from him and I

should probably call more, but

I find myself in so many mutually exclusive scenarios

that I cannot cope with

so rather than have

a complex relationship with two parents

I burden one more than another

I type oddly

Three fingers but over 80 words a minute, and I learned how to type correctly, but it never felt right

it just gave me the ability to

not look at the keys, sometimes

looking at the keys confuses me more, and sometimes

on these late late nights

where it feels my body's on the brink of failure

I use six or seven fingers total,

still two on my right hand, but

many more on my left, and it is

the slowest I'll ever type, but anything to get words on the page,

anything to get words out of my mind

These metaphors are mixed, just like my father's

but I think I find myself in hellish scenarios too frequently

and the progression of my disability is hard to cope with in the

absence of the proper tools or support

My board transfers are hard and

I get help with them from others about once a week, but no more, but I need a ceiling lift

because I'm avoiding peeing and drinking water and moving and eating

solely to avoid transfers, but

I'm trying to put it off until I move because it's

only a matter of months;

it's a mild nightmare, but nothing compared to my

actual nightmares or the pain or the loneliness or the uncertainty because

what is making me worse

why can't it let up

just for a minute

for a day

for a week even, but sometimes life isn't that kind, so we have

sweet nectarines at room temperature or cold unripe ones

and we write slowly or not at all.

I hold out hope things will be okay eventually, but

right now

it's really really hard

and that's all I can say, which

But the spinning has been Lots. Behold:

I honestly can't remember the yardage on this guy, maybe 150 yards (140 meters) ? I'll recount when I use it. This was 2 large-ish batts I made from random scrap when I fucked up my bad shoulder and wasn't able to keep making rolags for another project. Its a blend of various random wools, silk, and tencel. Sort of a light worsted. I wasn't sure at all how it would turn out but I like it.

Then, from the many mountains of rolags I carded, I made this set. 100% jacob, and the colored one (green-ish IRL) I dyed, altho i can't remember with what....maybe sage from the old garden ? Anyway, this became approximately 475 yards (430 meters). The grays are a light worsted and the greenish is maybe sports weight....not on purpose, but oh well. I think i want to make a hood with this. Its not dry yet (and ive got another specialized bag i need to finish) but I want to start it soon, before the rain comes. Most of my jackets dont have hoods, so I want a hood + something to cover the shoulders for when im out and about, that i can take off once I am inside. Many ideas, excited.

Here's my current spin. I did most of this today. This is cotswold roving I dyed with red onion skin and copper mordant. I also steamed it as roving and that helped a lot with spinnability. No clue what I'll ply it with. I have an awful lot more...it was SUPPOSED to be slipper yarn, but i just dont think it'll hold up at all.

Xx_ Intro Post X3 _xX

๑------------------------------๑

๑ Name's Sparrow

๑ 20, he/him

๑ Demiguy/Asexual

๑ I'm disabled-> Sickle cell ß0+thal + AVN

๑ Emo X3 (fav bands -> Silverstein, PTV, asking Alexandria, Hawthorne heights, set it off)

๑ I make art too @_@

๑ I have a TikTok! -> @ x_sicklesparrow_x

๑------------------------------๑

Xx_ Dni/basics_xX

✧ let's make this clear from the start... Free Sudan, Congo, Palestine, Haiti, Yemen, Uyghurs, fuck maga, fuck ice, land back, BLM, trans rights, disability rights, abortion is healthcare!

If you disagree w these go ahead and block me <3

✧ DNI: pedos/"maps", proship/darkship/zoos, fetishizers, racists, maga, pro ice, ableists, zios, minors, oh.. and the "it's not that deep" crowd. (Also, don't leave sexual/simp comments on my posts aimed at me)

✧ I don't argue, I block. Trolling is boring anyway

Disability Flare Up:

[Gif ID starts:

A black woman in a green dress walks, swinging her arm at her side. Small text at the bottom of the gif reads, “ Do I look like I give a fuck? Because I don’t.”