#medically complex

[fanon-and-canon]

"you always have something wrong with you"

well yea, no shit. its like im chronically ill or something

[zylahbee]

“consistency is key” doesn’t apply to many disabled people.

going to the doctor and having them tell me that, and that i need to stick to a schedule they have deemed appropriate is completely comedic.

what about the fact that my health and ability to do anything is a constant gamble? it can change drastically and almost instantly at any given time.

what about how right now i can stand up and make myself breakfast, but by lunch time? who knows. i may be unable to even sit up.

how do u listen to me explain that i dont have a daily or weekly schedule because of how unpredictable my health is, and reply by giving me a schedule.

do you not think i have tried to stick to a routine and schedule like all the healthy people around me??

all i see is people with consistency. i grew up thinking i was broken because i couldnt. i have pushed myself to breaking points trying to fit your mould of success and health.

im sorry if you experience this too. im going to make another post about what consistency can look like for me and other disabled people. because while we dont fit the classic definition of it, there are ways we can make our own version. i wish doctors would listen to me and would help me find my version instead of insisting on theirs, but they havent, so i wanna try help others find theirs. prt. 2 here (now going to make multiple more posts on this topic lol)

[rollingblakely]

Love how my options are: take the medication and feel like death… or don’t take the medication and also feel like death. At this point I’d like to speak to the manager of bodies, please.

[eepyfaggoth]

Extremely pathetic that doctors will try to pin “makes you starve” disease as actually ur just crazy and like. U can’t argue because starving makes u crazy and it’s not fair 👍

Extremely wimpy behavior on their part. Ego so big ur gonna kick someone while they’re down because they can’t fight back. I’m trying to get away from small dick jokes because I think they are like. Inherently oppressive. And I’m want to be a good feminist. But I can’t find the words for what I’m actually trying to say instead

I lost over 30 percent of my body weight, for me this was triple digits, after resisting weight loss without eating enough for a long time, and yeah. I am out of my mind 👍 I also have reactive hypoglycemia and the only things I can eat trigger it. There’s no winning. I’m in a spiderweb of double binds and I’m less and less lucid enough to navigate it

I also fully think gastroparesis Facebook groups are comparatively worse than other groups because we’re all fucking. Starving. And doctors take advantage and also get off on it.

I stg if I hear another person tell me they only need xxx/1xxx calories because they weigh 1xx and gain weight on anything more I’m going to get murdery.

“I get 1400 calories through my tube but I’m still sick and hungry for some reason” is deranged

I honestly can’t even blame starved thin people with gastroparesis for the fatphobia as much as others, not because it’s okay it’s fucked up and like they have proximity to the norm and no solidarity, BUT like they aren’t in their right minds and doctors faults. And neither am I but like. Shrug. The power/oppression dynamics are real but it’s like. “Pain is bad” or whatever and they sometimes aren’t psychologically or cognitively capable enough for me to blame them

Did u kno? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet? Are you dead yet?

Are you dead yet?

[zylahbeeart]

how do other chronically ill/disabled people answer the “what do you do for a living/are you at university/do you travel” type of questions when you cant do any of those at the moment 😭

i feel so pathetic and stupid being like.. ermm i do none..! i just.. yk.. try to keep myself alive

[sleeping-reverie]

Psych med side effects can be so weird. Like wdym the pill I take for the bugs I see in my food makes me randomly replace words even if it's completely irrelevant? Once I tried telling someone to take some meds and instead I said "Dude you bro should." wtf does that mean?

[a-totally-reasonable-username]

The worst thing about having multiple complex disabilities and chronic illnesses is that they don't agree with each other.

Doing something to help one thing either makes five other symptoms worse or you can't do anything about a certain symptom because all the things that would help are made impossible by other symptoms of a different disability. It feels like you can only ever loose.

One of best things i ever found for my autism, severe sensory issues and trauma, was using a weighted blanket. It helped ground me and i have always struggled with feeling disconnected from my body and "not knowing where my body starts and ends". Any type of consistent pressure feels incredible.

I had to stop using my weighted blanket two years ago because the weight constricted me in dangerous ways during seizures. My joints are now so weak that i struggle with the weight of a normal blanket.

Since i was ten years old i worked hard to use healthy coping mechanisms and replace self harming behaviors. When i was 14 i found that listening to music and taking long walks at night worked for me (i'm lucky to live in a place where it is safe for me to do so). By 15 i was able to consistently use this instead of self harm. By 17 i became bed bound. I got a wheelchair. I'm now unable to leave the house alone.

I struggle with eating and can't get enough calories in me. The solution is calorie drinks, smoothies, milkshakes, etc. I can't swallow any liquid thicker than milk.

It feels like there's nothing that can help and it feels like all my effort only ever ends up useless. It's not true but with so many similar situations it's often difficult to not give up and the only reason i haven't yet is because i'm on antidepressants.

[whatshouldwecallchronicillness]

When I forget how to have a normal conversation...

[spacedocmom]

Doctor Beverly Crusher

@SpaceDocMom

Health care workers who resent patients with complex medical issues have no business working in health care at all. emojis: black heart, blue heart, masked, spoon

3:34 PM · Aug 1, 2024

x.com/SpaceDocMom/status/1819018917701881871

[heatlightning-mp3]

y'all wanna know the wildest thing. the monday of the week i was admitted for sepsis (on thursday), i was noticing that i felt super gross and was having low grade fevers. i messaged our pcp about it bc we'd just ended a course of iv abx like two days before and didn't seem to be getting better

she told us to go to the er, thought maybe kidney infection, but our temp had gone down and we were so scared of them just dismissing us again and burnt out that we decided not to go until we got some sleep

we ended up going the next day when we woke up and while we were there home health called kind of alarmed because our wbc during their lab draw was like. 2x the amount where it's considered elevated

and then the hospital sent us home. even tho someone had already diagnosed us as septic via remote eval. and blood cultures grew out the next day 😂

idk exactly where im going with this now but honestly it feels like it was a really close call. its happened several times now where we get sick, seek or are sent in by a nurse/home health for help, and then just keep getting sent away over and over and over again until we're at a point where we feel too terrible to even bother

and like. thats really scary. because we literally had a blood stream infection. sepsis can progress and kill you in hours and we'd already been discharged approaching septic the friday before and they just wouldnt believe us about it

[chronicillnessfromateensmind]

lol just got medically gaslight again 😙✌🏻

[zylahbee]

anyone who thinks health issues end with walking out of the hospital doors, massive reality check for ya. there is no clocking out of chronic illness or disability.

surgery does not cure everything, medication does not cure everything. hospital cannot cure everything.

the amount of people in my life who believe that when i go to hospital, i will be discharged cured or symptom free is astonishing to me.

most of these people have known me long enough to have seen me through multiple hospital admissions and every time they come back to this way of thinking even though its never happened.

[rollingblakely]

My new chair is here and I’m pretty sure this is the most comfortable I’ve been since birth. 😂 Bubba approves, too! I was able to make dinner, load the dishwasher, and restock the fridge/freezer independently! The zero gravity tilt has helped a lot with the pain in my back + pelvic girdle. Gratitude doesn’t feel like a big enough words for how I feel. This is my 4th chair within the last two years and I actually feel like this one is mine. Like it’s a true extension of my body; we are one. I love her and am so grateful to have her. ❤️ I have not found a name yet so I’m open to any suggestions you may have, or tips/accessory suggestions too!

[saturn-canine]

Went to the ER last night. Eloped tho bc that shit was taking too long gonna see my PCP tomorrow. I might have tachycardia?? Will figure it out tomorrow. The nurses looked mortified as I wobbled myself out the hospital. But I wasn't bout to spend the night?!

Also I have THE TINEST baby mustache coming in eeee!!

[crip-writing-shit]

you use my stars to construct your constellations

do my scars spell it out for you?

do my legs read;

brave   

or

weak?

strong

or cowardly?

does my story work for you? 

is it neat and well packaged and clean?

is it messy and gritty like all must-see tv?

what do you see in my calendar? 

the hour long commutes?

the doctor after doctor?

or the time I left open for you?

[sleeping-reverie]

I probably shouldn't have kids, I have all the inheritable diseases on both sides of the family and the odds are definitely NOT in their favor.