#severe MECFS

[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

[neonarboretumart]

Nobody gonna see this post but I’m at my wit’s end- THERE ARE NOT ENOUGH WORDS FOR SYMPTOMS THAT AREN’T PAIN.

For years now, but far worse in the last two or three, I’ve been getting a sensation in my spine, legs and left side predominantly that is worse and more frustrating and disruptive than any pain I’ve had bar severe migraines. It stops me sleeping, causes sensory meltdowns and is just pure hell. When I have it it’s hard to think of anything else. But I can’t adequately describe it.

The closest I’ve got is it’s sort of like how you feel when you need to pee or sneeze or when I have a twitch or spasm coming, but intensified by a thousand and in different parts of my body. Nothing relieves it. It’s like my nerves are burning, but, again, it’s not pain at all. Other than being in flare (MECFS, POTS, Behcets, widespread chronic pain disorder) there’s no definitive trigger. I get a similar sensation when I have a spasm/twitching flare but it’s rarely as intense as when it’s on its own.

And I can’t look it up. I can’t ask my doctors about it. I cant describe to my mum exactly why I’m so upset and frustrated because I don’t have any words for it.

It does concern me because of how it almost exclusively affects my left side and my spine, or at least to any great extent. If anyone else gets this please please let me know I’m not just going batty or something.

#chronic illness #chronic illness symptoms #chronic illness support #mystery symptoms #mecfs #severe mecfs #pots #nerve shit #like #is it to do with the whole buggered up brain thing?

[thesecretlifeofmecfs]

People aren't meant to live like this for weeks- or months- on end, isolated within the same four walls, in the dark and quiet, alone.

The secondary depression that comes with being seriously physically ill is all too real. We need sunlight, companionship, stimulation. Our health tries to deprive us of these necessities, but we cannot thrive without it.

#chronic illness #chronic illness awareness #severe disability #severe mecfs #mecfs #cfsme #chronic pain #myalgic encephalomyelitis #chronic migraine #chronic fatigue syndrome

[livingdeathdiary]

So many must fall through the cracks.

The exhaustion is insurmountable.

Chronic fatigue syndrome.

And parkingsons is chronic shakey hands syndrome.

Brain fog.

And hepititis is liver fog.

People cannot imagine.

Limbs leaden to the ground. Paralyzed.

It is not fatigue, it is neurological disintigration.

They push until they collapse.

They collapse until they cannot get up.

Rotting in place. Withering away with no one left to care.

Too lost in delerium to ask for help. Or too lost in the sea of social media to be seen.

Never "my problem."

Always too hopeless.

The only ones who understand withering away themselves.

Lost in living death.

But it is the neglect that kills.

#myalgic encephalomyelitis #severe ME #severe MECFS #digital diary #living death #my diary #diary of living death #chronic illness #severe illness #neglect #dear diary #diary #severe me #spoonie #mecfs #chronic fatigue syndrome #chronic fatigue

[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]

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

[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

[per1shed]

life with severe chronic illness

#ME/CFS #very severe mecfs #i’m tired #i don’t want to go on anymore #l

[perplexingluciddreams]

finally managed to have a bath. but mum had to wash me because I couldn't do it myself. very frustrating because if there's one place where I'd really like to keep as much independence as possible, it's bathing. especially because I hate being touched, it's so painful to me :(. but I feel a bit better because I'm clean.

I've been having to wear a neck pillow constantly though, because I'm so weak and heavy that I can't hold my head up by myself. still in a lot of pain. but we're back to having more regular appointments over video, so hopefully we will be getting more support soon. (especially from occupational therapy to help with things around the house to help me and maybe some things to help strengthen me if that's even possible).

they also help with organising other appointments which is so helpful, I'm really grateful we have them to help us.

been on some new medication for pain as well, slowly increasing the dose. I've not noticed any difference yet (especially with this awful crash and new level of pain) but the fact that I've not reacted negatively so far is really good, I have a history of negative reactions to medication so I'm quite hopeful about this helping as it gets to a higher dose.

#autism #autistic #nonverbal #nonspeaking #high support needs #me/cfs #cfs/me #mecfs #cfsme #myalgic encephalomyelitis #chronic fatigue syndrome #chronic fatigue #chronic pain #chronic illness #severe me #disability #disabilities #disabled #words from my head

[chomesuke]

watching your life and all your relationships fall apart as you are barely able to leave your house is a very devastating part of being chronically ill.

#i often just try to be glad I'm not a severe case so i can actually leave bed and do things occasionally #but still #it's awful #i can't even keep up properly with online friends #or hobbies at home #even sitting up is too much effort sometimes #i try not to be too depressing or depressed but still. it's bad and i am unhappy. #things are worse at the moment bc of my stressful housing situation also and i have no idea when it'll everchange #mecfs stuff #I'm tired and in pain and anxious and i miss being healthy

[karistina]

I wrote this post in 2022, but it's still very relevant. In fact, I struggle each year to compose things on the days of the year dedicated to my various illnesses and disabilities, so I scheduled this post to go live today all the way back in December 2022.

Severe ME/CFS is a debilitating chronic illness, often with post-viral onset. Some of you reading this may be Long COVID patients who meet the diagnostic criteria for ME/CFS.

#mecfs #chronic fatigue syndrome #cfs #Severe ME Awareness Day #disabilities #chronic illness #fatigue #chronic pain #spoonies #Long COVID #housebound #bedbound #disability awareness

[life-as-a-gummy-bear]

Please check out the pinned version of my gofundme post and donate and/or share as widely as you can please! I also, now, have the link in my bio. Seriously, any amount you can donate helps, any sharing helps, even across platforms.

#signal boost #mutual aid #pwme #mecfs #very severe mecfs #myalgic encephalomyelitis #mutual assistance #trans community #chronic illness community #disabled community #trans and disabled #please help #donations needed #please donate #chronic illness #chronic pain #queer mutual aid #trans mutual aid #disabled mutual aid #fundraiser #medical fundraiser #fundraising

[neonarboretumart]

Things are rough. We’re heading into winter, and I’ll admit, I’m lonely and a little terrified. I’ve not seen any of my friends in person for a very long time, and I haven’t spoken to my best friend properly since last year. My dysautonomia is worse than ever, and covid prospects are the worst they’ve been for people like me since the pandemic began.

I’m so tired of the way things are. I want to hold value as a person again. I want freedom desperately. I want to feel safe. No, scrap that. I want to BE safe. I just want to be safe.

#illustration #spoonie #spoonie artist #dysautonomia #mecfs #cottagecore aesthetic #chronically ill #immune suppressed #immunocompromised #still shielding #evusheld #CEV #clinically vulnerable #CEV people deserve basic human rights #I want healthcare without risking severe illness and death #I’m sick of being gaslit #it’s not just a cold #it never was #disabled #behcets disorder #not disposable

[thesecretlifeofmecfs]

Health Diary: March 6, 2023

TW: While this post is not about an ED, it could potentially be triggering to those suffering from one.

I'm sharing this the day after because I didn't have the energy to type.

I had the most severe crash I've ever experienced (that lasted more than just a couple hours).

I was unable to stand or walk to the bathroom. I had no one to take care of me, so I had to avoid drinking water so I could hold it for the 11 hours my partner was gone at work. My arms were too tired to lift food to my mouth, and so I also went that entire time without eating.

I was able to watch about 2 hours of TV (I watched a documentary so I could zone out as needed), but spent the rest of the time in a half-asleep state with and eye mask and my noise canceling headphones on listening to binaural beats or other low stimulation music. Since I couldn't actually fall asleep due to breathing issues related to dysautonomia, the entire day was excruciatingly boring.

My cat was by my side, purring, the entire day. I'm so grateful for him.

#tw #myalgic encephalomyelitis #mecfs #cfsme #chronic fatigue syndrome #severe mecfs #severe cfsme

[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

[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