⋆ disability diary ⋆

disabled aussie adult w/ medium support needs ! ❀ please be kind :)

[neapolitan-constellation]

⌇ 「 ✦ WELCOME to the CIRCUS ✦ 」

‹𝟹﹕name : syren, august (she/he/it)

‹𝟹﹕identity : enby, omni ace, sex-repulsed

‹𝟹﹕body age : 21

‹𝟹﹕conditions : level 2 autism, dysautonomia, class 4 paes, arfid, malabsorption disorders, mcas, hsd, chronic migraines, anxiety, dpdr, did, me/cfs, degenerative disc disease

‹𝟹﹕disclaimer : i reblog things i relate to, but this does not necessarily mean that i have the disorder(s) mentioned !

‹𝟹﹕asks : open + anon on

໒꒰ྀིっ˕ -｡ྀི꒱১ farewell !

[wheelie-sick]

chronic fatigue vs 430mg of caffeine daily who will win

[lupusbaby]

When you’re chronically ill or disabled, a short task also requires an allotted recovery time or flare time. I can vacuum my bedroom in 10 minutes with difficulty, but then I need 2 more hours to rest because I exerted myself. I might even need an entire day to recover from a more difficult task. So a 10-minute task now becomes 2+ hours, and an hour task becomes a day. So when I ask someone else to do a task I can technically physically handle, it’s because they can do it in minutes and I need hours.

[neapolitan-constellation]

i love mris shoutout mris #mymri

[birdbyt3]

a message to my fellow wonderful disabled/chronically ill butches and femmes: there is a place for us, we’ve always been here. you don’t have to follow the ‘big strong provider butch’ or ‘perfect put together femme’ archetype to belong, and you don’t have to explain yourself to anybody 🫶

[zmpl]

the most evil person alive would like to start their career in mental health

[neapolitan-constellation]

Had my nerve conduction study today! ^_^ It hurt like a motherfucker, and that comes from someone with a high pain tolerance jdjfkfkfk.

They were like "hey we're gonna electrocute you for thirty minutes" and I was like "okayyy ♥️" but I was a FOOL. THAT SHIT ACTUALLY HURTS 😭😭

[neapolitan-constellation]

in a horrible crash. fullbody weakness, incredibly tired, horribly hungry but eating gives me intense nausea, migraine, light-headed and dizzy, short of breath, etc. :(

[neapolitan-constellation]

Had my nerve conduction study today! ^_^ It hurt like a motherfucker, and that comes from someone with a high pain tolerance jdjfkfkfk.

They were like "hey we're gonna electrocute you for thirty minutes" and I was like "okayyy ♥️" but I was a FOOL. THAT SHIT ACTUALLY HURTS 😭😭

[weenhands]

this is literally just because of my curse

[official-celiac-posts]

[disabled-bug]

‼️ content warning for talking about (necessary, healthy) food restrictions ‼️

Please don’t be rude about somebody’s dietary restrictions.

Sometimes people don’t even notice it in the little comments about how gross vegan food is, how bad for you dairy-free milks are, how everything gluten-free tastes like cardboard…people don’t choose their food intolerances!!!!

I have to use a lot of substitutes for MEDICAL REASONS, and I’ve had people tell me to my face how gross that is. Vegan cheese tastes like glue. Oh, you have to try a gluten free diet? That’s so trendy now, but really you don’t have to. The food is so bland.

I do have to, actually. It’s discouraging to hear how inferior your food is when there’s no other option!!!!! Please try to be considerate of people’s non-negotiable needs.

Also don’t be mean to people who do choose their own dietary specifications, that should go without saying. Be considerate and respectful of what people have to eat!!!

With love, if nobody is practicing unsafe or dangerous eating habits, mind your business ❤️

[yellow-cat]

some days are really hard and it can be difficult to understand why. but usually its probably because my blood is haunted

[neapolitan-constellation]

I wish there was a way to just Obtain nutrients without the hassle of consuming things. I hate eating and the pain that it causes. Attempting to find food to eat is so hard with all of my intolerances, especially since I'm unable to go grocery shopping and have to rely on my parents remembering to buy me food. Whenever people complain about difficulty eating, the usual recommendation is "get a tube" or "try a liquid diet" but both of those involve the food going to your intestines anyway which is what I'm trying to avoid. Like, I don't want to digest stuff. Can I skip that part?

[neapolitan-constellation]

"Okay, you're fructose intolerant, so the only fruits you can eat are citrus and stone fruit. Wait, you're also polyol intolerant so you actually can't have stone fruit. Oh, you're histamine intolerant too, so you can't have citrus. Vegetables? Well vegetables also have fructose and polyols. And you're gluten intolerant too so no gluten-containing grains but be aware that the remaining grains have fructans anyway. And you can't have galactans so no nuts or lentils. And cane sugar is 50% fructose so any product with sugar is also not allowed, but you can't have sugar substitutes either because those usually have polyols. And because of your POTS you can't have anything heavy or high volume, so limit both your carb and protein intake. Also soy makes POTS worse too so avoid that."

haha ok man 👍

[neapolitan-constellation]

tried leaving the house today. the goal was to get lunch at a shopping centre and then walk around. i felt incredibly sick after eating just half my meal. my mum said we should just go home instead of doing any shopping. i was unable to walk through the car park to the car. my brother had to practically drag me. i've been resting in bed for the past two hours since getting home. i was yelled at for being lazy and difficult. i couldn't survive a fifteen minute outing.

[neapolitan-constellation]

hey I've been going around yapping with my mutuals about disability stuff and I realized I haven't checked in with you in a while. How's it going? Did you ever get any treatment for PAES?

ps I hope you're doing good 🍀

AAH sorry i'm answering a month late 😭😭 thank you so much for checking in, that's very kind! i'm getting by!

a summary of everything:

- i am in pain 24/7 and my walking is getting worse (abnormal gait, covering less distance), but my mother is heavily against me getting surgery or using a mobility aid of any kind (she referred to the surgery as "mutilation"?????????)

- even if i were to get surgery, it wouldn't be until nov/dec at the earliest because my two uni placements won't allow for surgery recovery time :(

- i'm currently seeing a neurologist because there's Something Else going on, which may or may not be causing the fPAES?? i don't know.

i'm really hoping to get everything sorted out by the end of the year :,)

[sprinklesharkie]

hai i got my new wheelchair !! i'm sooo excited !! it's very freeing to have a mobility aid thats better suited for my needs n i'm so super excited to decorate it !!