#Severe ME

[phleb0tomist]

happy disability pride month to people whose main mobility aid is an adjustable bed

people who need to lie flat all the time

people who only sit up to eat or use the bathroom

people who are too unwell to be transported anywhere, even within their own home

people who structure their whole week around recovering from a single planned trip out of bed

people who are technically wheelchair users because they can’t walk, but can’t tolerate being upright for long enough to use a chair either

people who can’t adapt activities to be accesible, and instead have to just miss out on 90% of life

i see you and i respect you and love you. if you feel limited, confined, sick, or bound to your bed, i see you.

[theghoulofme]

so tired of constantly having to tell people about the worst times of my life. all because I'm so disabled that i need help with everything. financially, physically, medically... it's just so tiring having to explain everything again and again and be misunderstood constantly.

[myalgicencephalomyelitiscfstom]

Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time.

from:

[perplexingluciddreams]

Are you FULLY housebound?

I only leave the house for medical appointments, and only if it's absolutely necessary that they are in-person appointments. And when I do leave the house for those appointments I need significant help to even get ready to go out, I use a powerchair, I have to be held by another person to walk from the door to the car, etc.

It also makes me extremely exhausted and in agony by the end of it. I often struggle to get back inside from the car on the way back.

If it can be a video appointment I do that instead.

I am also mostly bedbound, have to spend the majority of my time in bed. Have very little functional mobility, I get up a few times a day to go to the toilet, but even walking the few meters from my room to the bathroom and back is a real struggle.

So I think I fit the definition of housebound, yes.

[livingdeathdiary]

Its funny how one room can become your whole world. Its like I live on a spaceship.

Unmoored.

That is how I feel.

My tether to the terraverse has been stripped away.

I miss the smell of grass. The feel of wind across my face. The deep musk of dirt between my toes.

[reputayswift]

[ripeteeth]

you gotta write for your dick not the stats

[artkaninchenbau]

A h-heartfelt reunion..?

Bonus

[ezramire]

if aught but death part me and thee

[sunrequiem]

The Paradigm Shift We Need For Understanding and Preventing Chronic Disease

Inspired from a thread started by Kathy Eagar, quoted with permission Fun fact: I wrote this nearly a year ago, so it’s time to get it out of my drafts. Photo by Towfiqu barbhuiya A paradigm shift is needed for chronic disease. They are thought to be caused and prevented by lifestyle factors and individual decisions… But many “mild” infectious diseases can have devastating impacts after the…

[theghoulofme]

you know when you go over your energy limits and it feels like all emotional regulation just goes out the door and now you are just sitting there sobbing...

yeah that was me with breakfast this morning

[myalgicencephalomyelitiscfstom]

Content warning: this deals with a very tragic case of death in somebody with ME, related to medical neglect

[faiirygrahamdevanily]

🩵severe mecfs awareness day 08/08

🩵brilliant in depth study giving insight on the traumatizing experience of being long-term bedridden during childhood & adolescence

🩵in depth study about the experience of loss, grief, stigma, and trauma in severe mecfs sufferers

🩵Here's amazing video content & written information

🩵Severe mecfs is an indescribably cruel disease confining people to their bed with unbearable symptoms. They're suffering in silence and isolated from the world. Unable to tolerate light, sound, human presence or any other sensory stimulation for most or all their time.

🩵It's when living becomes incompatible with the very little existence you have left. It's a chronic hell every single second of your time for years & decades ongoing.

🩵It's pure solitary confinement except for the few rare minutes per day you can eventually communicate with your caretaker. Additionally you might be able to use your phone sporadically to be a part of the world, at least digitally.

🩵It's the psychlogical & physical horrors inflicted on patients who endured graded exercise therapy or any other mecfs typical medical malpractice/neglect.

🩵There is almost zero research, zero treatment & little to no support. Mecfs is among the greatest medical scandals of the 21st century affecting a prevalence of 1.3% of adults (statistic from 2021-2022). That means 1 out of 100 people endures mecfs, 25% of them fall into the homebound/bedridden category.

🩵You may never heard of mecfs BUT you most certainly know someone with mecfs, they just slowly faded out of society/everyday life getting homebound and/or bedbound before you could make out why.

🩵Here's a perfect description of the inhumane small amount of living possible especially in the very & extremely severe stages:

🩵My heart carries deep solidarity for severe mecfs sufferers and their precious caretakers.

🩵THANK YOU for reading! Reblogs to spread awareness are appreciated <3

[thestuffedalligator]

My brother-in-law has a Thing where he gives me increasingly rare copies of The Bee Movie and it’s long since gone from “Goofy running gag” to “I don’t know how much money he’s willing to commit to this bit and it Scares Me.”

Where the fuck can we go from here

[livingdeathdiary]

I am like the ship of theseus. Slowly being replaced bit by bit. Is the person who once inhabited me even still here?

[bruciemilf]

Jason’s alcohol tolerance is exactly 0.09%, which Dick knows. Which is the primary reason he roped his siblings into playing a drinking game.

At most, Steph, who likes to think she’s fluent in Jason, — or Batboys with repressed emotions, at least, — anticipated the following:

Angry shouting, maybe some swear words God definetly didn’t approve of, trying to fist fight Alfred’s plants, painting the Batmobile pink, and the works.

She definitely didn’t expect a ruby cheeked Jason to cry in Bruce’s lap.

“What the fuck are we gonna do if we don’t know eachother in the next life, huh?!”

Tim piped up with an a nerdy rant, — technically, if life were to reinvent itself into another existence, it’d simply be an alternative universe being created, — but Jason simply throws his shoe at him.

Bruce, much to Damian’s pride, doesn’t look shaken in the slightest. If he can handle his mother, he can handle everything,

“Sweetheart, I really think that’s not going to happen, thought,” he assures him with gentle conviction.

“But we’re not gonna know eachother! What the FUCK. I want to be your son in every life. I’m gonna kill God.”

“Please don’t kill God.”

“We’re Jewish, what do we care?!”

“Jay,” Bruce promised, “I would find you in every universe.”

That was supposed to make Jason feel better, not make him cry harder. But it’s cute Bruce tried, Dick thinks.

He still grounds all of them for paining the Batmobile, thought.