#severe myalgic encephalomyelitis

[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.

#ticked off my niche group ☑️ #hashtag ​technically a mobility aid user but really just spends 23 hours daily horizontal in bed #disability pride month #myalgic encephalomyelitis #orthostatic intolerance #severe myalgic encephalomyelitis #obviously many things can make you bedbound but y’all know my area of expertise is M.E #severe ME #disability #txt #1000

[myalgicencephalomyelitiscfstom]

#disabled #severe myalgic encephalomyelitis #bedbound #bed bound #mecfs

[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.

#chronically ill #chronic illness #disabled #mecfs #myalgic encephalomyelitis #severe me #long covid #me/cfs #disabilties

[barelyfunctioning-amber]

Being disabled is exausting, and even more exausting if you're not fully diagnosed.

I just

...

Want to function more but I just can't.

-Amber

#disabilities #disability #disabled #actually disabled #chronic illness #autism #ocd #severe misophonia #autism spectrum disorder #me/cfs #cfs/me #myalgic encephalomyelitis #chronic disability #chronic fatigue syndrome #chronic pain #chronic fatigue #bps #bladder pain syndrome #oab #actually compulsive obssesive #obssesive compulsive disorder #ibs #ibd #fd #functional dyspepsia #irritable bowel syndrome #inflammatory bowel disease #invisible disability #invisible illness #incontinence

[atikas]

In May of 2021 Maeve Boothby O’Neill was told by an NHS doctor she would “feel much better if you gave your hair a wash”. In October of 2021 she died. Multiple young women are in situations extremely similar to those that led to her death, right now.

#myalgic encephalomyelitis #mecfs #medical gaslighting #medical misogyny #I wish I was well enough to reread it and post some screencaps of key bits but I’m not so #maybe someone has already shared this article on here but I haven’t seen it #people outside the me community need to know what’s happening to people with me especially young women #we know of multiple young women just in the uk in very similar situations to maeve’s before her death #edit: I have tried to add a couple of screenshots from the article #I feel so trapped and frustrated that I’m too severe to do a decent job at making people aware of this illness but anyway

[thesecretlifeofmecfs]

#memes #ferret #chronic illness #chronic illness memes #severe disability #spoonie #spoonie memes #disabled life #mecfs #cfsme #myalgic encephalomyelitis #chronic fatigue syndrome #fibromyalgia

[life-as-a-gummy-bear]

Please donate and share widely. Any amount helps. I’m in the latter stages of ME (Myalgic Encephalomyelitis) a degenerative multi-system neuroimmulogical disease. We need mutual aid to be able to afford the medical equipment, meds, physical therapies and other things that can help mitigate some of pain and sickness im suffering daily. Please help ❤️

#mutual aid #mutual assistance #medical fundraiser #pwme #mecfs #myalgic encephalomyelitis #severe MECFS #very severe MECFS #signal boost #pls share #share widely #chronic illness #chronic pain #bedbound #trans and disabled #trans nonbinary #autistic community #trans community #need help #need financial assistance #please donate #millions missing

[chronicallyuniconic]

Oh, the comparing.

The comments make me want to bang my head against a glass door.

"I've HAD Myalgic Encephalomyelitis"

Followed with:

"I had to pay to go PRIVATE"

They continued:

"it took me 5 YEARS (to go back to work)"

**you** had BURNOUT.

They ain't the same. Stop.

I hate this. All of it.

#chronic life #chronic pain #myalgic encephalomyelitis #burnout #They're not the same #it's not the same #stop it #severe fatigue #chronic illness #chronically ill #chronic fatigue #fibromyalgia #spoonie problems

[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.

#anon ask #severe me #myalgic encephalomyelitis #me/cfs #housebound #bedbound #words from my head

[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.

#myalgic encephalomyelitis #diary of living death #living death #mecfs #severe me #bedbound #chronic illness #spoonie

[phleb0tomist]

the recent surge of articles on severe ME is shattering my heart. we’re looking at a live, ongoing portfolio of the NHS’s failure to protect young ME patients, the same failures that cast a shadow over both my childhood and my current life, and it’s so wild that things aren’t changing. there’s no repair, no apology for the highly preventable suffering or the deaths, which are mostly young women.

the improper care of ME patients isn’t because of a lack of funding, it’s because of ignorance & stubbornness. the bare minimum of appropriate care to prevent a severe ME patient from getting worse is to allow them to be somewhere dark, quiet, lying down, hydrated & fed, and somehow the NHS can’t even provide that. my main shred of hope is that this is finally being reported and i wonder if that will be the catalyst for a little bit of repair. i’m desperate to believe it will be

#feel free to reblog. it means a lot that ppl are becoming aware #txt #negative #medical trauma #medical. #severe myalgic encephalomyelitis #myalgic encephalomyelitis #chronic illness #starvation tw #death mention #let me know if more trigger tags are required

[myalgicencephalomyelitiscfstom]

#myalgic encephalomyelitis #chronic fatigue syndrome #long covid #severe me #severe myalgic encephalomyelitis

[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

#chronically ill #chronic illness #mecfs #myalgic encephalomyelitis #severe me #long covid #my brain went beep boop oh no BEEEEEEEEEE #now resting in a dark room

[kaaspannenkoek]

Star

When I feel alone I like to look up

For every star is a person with ME

Which means that for every star

There exists someone

Who knows what it's like to be me

#me/cfs #myalgic encephalomyelitis #very severe me #schrijfsels

[atikas]

Is there not a rich person out there who cares enough about myalgic encephalomyelitis to give Ron Davis the funding he needs, since the NIH clearly won’t?

#myalgic encephalomyelitis #I hope everyone on ‘team tired’ gets stuck with this illness in its most severe form for decades

[thesecretlifeofmecfs]

If you're friends with someone who has a severe disability, please don't ask them "So how are you- you know, aside from the health stuff."

When you have a severe illness, it affects your life in every single way. There is very little life outside illness when you spend your days bound to a bed or hospital room / care facility.

I'm sure it comes from a good place, but it comes across as dismissive and is just awkward.

#disability tag #severe disability #disabled life #disability advocacy #chronic illness #severe chronic illness #myalgic encephalomyelitis #mecfs #cfsme #spoonie life