#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.

#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

[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

[myalgicencephalomyelitiscfstom]

#myalgic encephalomyelitis #chronic fatigue syndrome #severe me #mecfs #cfs

[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

[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

#my life #bee movie #he’s already given me the academy For Your Consideration copy #and copies in greek mandarin and korean #AND copies of the bee movie video game AND pez dispensers AND christmas ornaments #AND bee movie converse sneakers distributed only to members of the cast and crew #at this point i fully expect to find the severed head of jerry seinfeld in a box this christmas #10k #20k

[artkaninchenbau]

A h-heartfelt reunion..?

Bonus

#Sir Crocodile #Monkey D Dragon #Emporio Ivankov #Dragodile #Crocodad #My art #One Piece #We're not gonna talk about the work I should be doing rn I have Severe Procrastinitis and I'm doing my best okay #Alternative version where it was both Crocodile and Garp beating Dragon's ass before Iva-chan joined in but that was too much effort lmao #I'm a believer in Dragon being a Wind Logia so don't worry guys he is 100% taking this beating intentionally #He knows what he did and he's dealing with the concequences of his actions. With grace. #You know I realize Iva-chan should be two whole meters taller than Crocodile but we're just gonna ignore that #Look Iva-chan taking Crocodile's side and being like ''Crocoboy is right you fucked up bad Dragon'' brings me joy #And for real I've been wanting to draw this for months. But never did because I had other shit to do. Which I still do #But. You know. Sometimes you need to draw a shitpost. It's ✨ self-care ✨ #And appearently One Piece shitpost comics have become the thing I draw for myself on occassion

[1alchemistart]

dont got much to offer for The Holiday but have these sillies!

happy valentines day :D

#sxf #spy x family #damianya #damian desmond #anya forger #my art #i am sleepy rn im scheduling this ahead of time like several hours ahead JKSDFKLS #unrelated to sxf. the tags are my speaking place shush #was not expecting the toby fox newsletter to have so much for me to think about JKKLDFSS #good ole gaster sending us love letters (we don't KNOW it's gaster but like. typing pattern + him being the only character to be like) #(directly referring to the game as deltarune) #ALSO THE WEATHERMEN HAVE NAMES NOW ?!?!? AND ARE IN LOVE ???!?! #so happy for them fr #i didnt get the mettaton card but like just know. that is my essence. all those blingee-core sparkles. those picmix hearts. me #anyway YIPPEE WAHOO

[fluentisonus]

me reading one of the most famous books ever written: do people know about this book. do they know.

#<- has happened to me several times actually w different books #thoughts

[greykolla-art]

“I’m a SHARK-” said Alastor the deer demon, “because it’s a good metaphor!’

(NO I will not do a part 2!💕)

#grey art #hazbin hotel #hazbin hotel comic #radiostatic #one sided radiostatic #vox #hazbin vox #alastor #the radio demon #comic #I feel like the coloring got weird here but whatever 👌💜 #I think Vox severely overestimated his importance to Al #and to prevent himself from dying from cringe he became a supervillain #I’d absolutely hate Alastor with a passion too if he made me feel that small.😂 #radiosilence #onewaybroadcast

[phleb0tomist]

guys i’m SO EXCITED for the Decode M.E study!!!

if u follow my blog you might know i’ve been mostly bedbound from myalgic encephalomyelitis for about 7 years. ME has basically zero funding, and a history of controversy and medical fraud when it comes to treatments and research. lots of patients have been mistreated and made sicker by dangerous treatments (including me). this biomedical study is looking at genetic causes to give us better treatments!

please go ahead and read about it, or TAKE PART if you have M.E, especially if you’re a severe patient!! we need more data from severe patients because our voices are often missed.

it’s uk only, but sharing could reach other uk-based ME patients! the survey is accessible, it can be done at home and has dark mode, audio transcriptions, and phone assistance for people who can’t look at screens due to light sensitivity. :)

#please feel free to reblog! #medical #myalgic encephalomyelitis #chronic illness #me/cfs #severe ME #health #txt

[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

[myalgicencephalomyelitiscfstom]

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

#myalgic encephalomyelitis #severe me #medical neglect #mecfs #cfs

[perplexingluciddreams]

do you think your physical ability deteriorate is because severe ME + autistic catatonia or are you suspecting something else? :o

also!! know you are considering switches for AAC. have you thought about/ruled out eye gaze? my motor decline too (don’t think as severe as yours) and am thinking about options…

all neutral questions!! not tryin to imply anything or give unsolicited advice

Autistic catatonia definitely plays a part in my physical deterioration (as does severe ME), but I do think that there must be at least one other thing at play here. ME can explain weakness due to lack of activity, catatonia can explain freezing, trouble initiating movements, slowing down of movements, worsening motor planning. But I also have rapidly worsening balance and coordination issues (especially affecting my gait), shakiness and can’t make precise movements (which is partly catatonia I think, but catatonia can’t explain why my fingers/hand shakes when I try to touch my screen, or why my foot misses the leg of my trousers several times when my mum is helping me get dressed). I also have significant weakness on my left side that has been getting worse for quite a while. So I’m pretty sure there is something else going on, I just don’t know what. I hope I can get some answers soon because it makes me very anxious not understanding what is happening to my body.

I have considered eye gaze! I will hopefully get to try lots of options at SCTCI (the Scottish AAC place- not official name but I can’t remember what it stands for 😂). Even if I don’t use eye gaze right away I will definitely choose a device that is compatible with eye gaze cameras because if I keep deteriorating at this rate then I will need it at some point in the near future. I think I would like to try switches first though, I don’t know why but I just prefer the idea of it- maybe it makes me feel like I have more control?

Sorry for super long answer but I had lots of words for these questions! Thank you for asking :D

#ask #autistic catatonia #severe me #myalgic encephalomyelitis #aac #aacdevice #aac user #switch access #eye gaze

[livingdeathdiary]

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

#severe me #dear diary #digital diary #living death #my diary #myalgic encephalomyelitis #diary of living death #chronic illness #diary #spoonie

[technofinch]

bro i swear we're not gonna do anything weird this time i just need you to meet me in the cemmy (<- new way to say cemetery)

#this post is open to blorbotagging #for me personally it's herbert west of course but i know several of you have your own cemmygoers