#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]

[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.

[mochasucculent]

Dumb thing that would not leave my brain

[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]

"The Dilemma of Caring and Doing Research for Severe ME/CFS Patients" by Christian Kull based on the experience of trying to get care for his son

[faiirygrahamdevanily]

🦚🪽posts that remind me both of emilie and severe mecfs never cease to amaze me

🦚🪽these might be THE most adequate and accurate severe mecfs descriptions I've ever seen!! (credits to m.e_and_more on ig)

🦚🪽snippet of my severe mecfs félix fic:

[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

[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.

[isawken]

was recently having talks about saving up for a several-week vacation with my partner and he said something that i seriously cannot stop thinking about and i need to Ask The Audience

this is not cumulative, you must have spent over 14 calendar days outside of your hometown in one stretch to be able to hit Yes

i’ve never asked for this before but if you could rb for reach that’d be cool, this is a straight up potential worldview-shattering revelation right here and i need data if im gonna shatter my dang worldview