Its Devastating, Seeing The Life Ive Longed For Happen To Others While Im Stuck In Bed In A Flare Up…

really struggling with this atm.

ive lost all the strength i fought so hard for the past two years. it doesnt seem fair that it can all be taken away so fast.

im exhausted. trying is exhausting.

disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)

what happens to consistency, to habits, when you have a dynamic disability?

i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.

you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.

for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.

for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.

and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.

then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.

understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.

Something that really bothers me about disability activism and representation is how people with gastrointestinal illnesses or disabilities continue to get the short end of the stick and that nobody ever talks about it because it’s “taboo”, which it absolutely shouldn’t be. We can’t be open with people IRL, even in disability spaces, about our conditions because they’ll either view us as disgusting or triggering or they’ll view us as sex objects because of their fetishes. We don’t fare much better in fiction, with GI disability rep being largely allocated to either grossout humor, the author’s barely disguised fetish, or just actual pornography about our conditions.

It sucks because I have a lot of health issues, and I can talk about my chronic pain or my stigmatized mental health conditions with no fear of being shamed, but it feels like w/ my GI issues I’m keeping a dirty secret because that’s how people - including other disabled people - treat these kinds of conditions. People like me shouldn’t be made to feel like we’re outsiders in our own spaces.

(Note 1: This post is not meant to kinkshame. I bring that topic up because unfortunately it IS some of the only rep we get, and we deserve representation that talks about our disability as a disability and not something sexually arousing)

(Note 2: Other disabilities/illnesses are treated this way too. This is just the one I have experience with.)

I prefer Musa in red Enchantix

Bloom redesign 💙

being a disabled environmentalist is hard.

i care so much and i wish i could aim for things like zero waste. but i just cant, doing something like that would be ignoring my health needs.

its quite isolating, because i try to find tips and environmental swaps but often they just arent possible for me to use/do and then i feel guilty for that.

even though i know its not my fault and i cant help it, it just triggers my inner ableism and i blame myself for being this way.

notalgia is so strange because what do u mean i long for things that remind me of the worst times of my life?

reaching out for help feels like this:

“hi, i know i need help and i am not coping.. and i dont know what to do that will help me”

“well what do you need from us exactly? what do you want me to do?”

“i dont know…?”

“well i cant do what you dont ask for”

“great.”

whens the update that fixes the multiple chronic illnesses bug 😔

I truly think the human body should have some kind of source code that prevents a person from developing more than one chronic illness and/or mental illness

I can handle one (1) at a time but when all of them are flaring up at the same time? That's a great way to push me into a breakdown of despair.

Like my legs and back and neck and shoulders hurt badly today, my narcolepsy has me exhausted and brain-foggy but I'm in too much pain to sleep, and I've got the symptoms I get a few hours before a migraine develops. And I don't have meds for ANY of these things anymore because of many reasons simplified down to: most of my doctors don't listen to me and the ones that do are now a 2 hour drive away.

And I've been on the verge of tears for days which has me suspecting my period is right around the corner and I swear to god if I get my typical endometriosis-excruciating-pain-cramps on top of EVERYTHING ELSE today, I might hurt myself or someone else. I'm at my fucking limit.

And I want to cry to like, "honor my feelings" (can't think of a better way to put it), but crying will make my migraine come on faster and make my muscles hurt worse so I'm just stuck here.

feeling so utterly sick of life, i dont know how to keep myself aflame when it feels like everything wants to put me out.