#chronical fatigue syndrome

[ta-matia-tou-morfea]

My best friend Nevra Liz is a 27 year old woman in Karachi, Pakistan who has been suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Ehlers-Danlos Syndrome (EDS), and related comorbidities such as dysautonomia since childhood. However, her health has taken a dramatic downturn in recent years with the onset of severe Premenstrual Dysphoric Disorder (PMDD). Before becoming dangerously ill she studied many languages, and later used her translation skills to help out disabled patients all over the world, and advocated for disability rights. She is no longer able to do any of these things. 

The first smaller goal for Nevra is £4,000 (equivalent to $4898.30, euros: €4661.12)

This includes laparoscopic surgery

at Aga Khan University hospital and a hospital stay, which costs about 670,000 PKR or £2,500.

Nevra needs relief for her excruciating pelvic pain as soon as possible. (Her pain is 9 to 10 on the pain scale every day.)

The remaining £1,500 will go towards hospital stay for additional days, food, medication, transportation, home care, at home nurse, caregiver, supplements, and medical device support items.

We have less than 4 weeks to reach our goal and we need the doctors to continue taking the pain seriously and not deciding against the laparoscopy because of a lack of funds and putting Nevra on random medications again.

The GoFundMe link to donations: https://www.gofundme.com/f/save-nevra

To know more about the case:

https://www.meaction.net/2018/04/05/chronic-illness-foundation-launches-in-pakistan-call-for-support

Your help is valuable and we appreciate it really in these crucial times.

May God bless you 🙏

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizonal, but I need more horizonal. I need to be absorbed by the floor. I think that would fix me

[crippledpunks]

i wanna say fuck you to anyone who shame disabled, chronically ill & neurodivergent people, especially homebound folks, for "spending too much time on their phone/on the internet/etc." when it's the only (Somewhat) accessible way for them to experience the world. many people don't get to get out much even if they want to because of their disabilities. shaming someone for trying to connect with the world, make friends and engage with hobbies in ways that are accessible to them is beyond cruel and unnecessary

[potsiepumpkin]

When the chronic fatigue is chronic

[mindblowingscience]

In 2016, years before long COVID was a thing, the US National Institutes of Health, the largest single public funder of medical research in the world, launched a study into a long-neglected and puzzling condition: chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis, or ME/CFS. Eight years later, the results of that study are finally out. In one of the most thorough investigations to date, researchers took a deep dive into a small group of 17 people who developed ME/CFS after an infection and found distinct biological differences compared to 21 healthy controls. "Overall, what we show is that ME/CFS is unambiguously biological, with multiple organ systems affected," neurologist Avindra Nath, lead researcher of the study and clinical director of NIH's National Institute of Neurological Disorders and Stroke (NINDS), said in an interview with JAMA. For decades, many doctors had dismissed ME/CFS as a psychosomatic condition that was 'all in patients' heads'. Now there is little doubt: a host of biological changes underpin ME/CFS.

Continue Reading.

[a-sassy-bench]

do able-bodied people not understand that if disabled people call out of work every time they don't feel good that we would call out of work every fucking day?

like honestly. what do you think being disabled means?

[anxious-and-in-pain]

it’s okay to do things that make your symptoms worse (as long as you’ll stay safe)

every once in a while you need to eat something yummy. or go on a walk. or a trip to the zoo. take a hot shower. cry your eyes out. dance. listen to music. draw for way to long. write. laugh. sit in a cafe with a friend. paint your nails. dye your hair. go on a run. pet a cat

sometimes you need to do things that are cathartic or make yourself feel alive. sometimes you need the reminder of why you’re fighting so hard to stay alive

this is your reminder that just because it makes your symptoms worse, it isn’t always the wrong thing to do. there can be value in these actions

[mybodychoseviolence]

“surely this will not cause my chronic illness to flare up,” i say, actively doing something that has never failed to flare my chronic illness

[violet-phoenix-nebula]

When someone has a chronic illness or is disabled and can't work, they say a few common things.

It must be nice to sit around all day/sleep all day.

I wish I could sit around all day and not work.

I wish I could sleep all the time.

They don't want to sleep as much as we have to. They'd feel sick and sluggish.

They don't want to sit around the house all day not doing anything. They'd be bored out of their fucking skull.

It's so unbelievably fucking frustrating, but there's a fundamental lack of understanding.

They liken our lives to a vacation, imagining that it's fun and relaxing and we can do whatever fun things we want to all the time.

In reality, it should be likened to an extended hospital stay. You can't do anything and you feel like shit.

[riddledem0n]

Yesterday the 12th of May was Fibromyalgia awareness day. I'm a little late uploading it, but spreading awareness is being done nonetheless. Lots of love for my chronic pain people!! <3

[i-the-spoonie]

[myalgicencephalomyelitiscfstom]

Press release for this Canadian study [Metabolomic and immune alterations in long COVID patients with Chronic Fatigue Syndrome]:

“We do not actually believe that long COVID is a separate new disease,” explains rheumatologist and clinical immunologist Jan Willem Cohen Tervaert, professor of medicine, who is an expert in fatigue associated with rheumatic illnesses.

“Some symptoms — such as the loss of taste and chest pain — are very specific for COVID, but we see a common pathway with ME/CFS, which leads to the same fatigue, brain fog, post-exertional malaise, widespread pain and non-refreshing sleep,” he says.

[crippledpunks]

chronic fatigue weaves its way into everything. people love to tell disabled people they'd love to rest as much as we do, but they fail to understand how tired we are while we rest. we are not relaxed, we are generally pretty miserable, either from pain, irritability, or fatigue- which bleeds into every aspect of your life. being too fatigued to get up off of the couch means that you're too fatigued to get to the cupboard to pull out pans to attempt to start cooking.

the steps hidden within steps that are required to do a lot of tasks related to being a "functioning adult" are daunting, there are often way too many steps necessary to make "Simple" foods or do "simple" chores for disabled people to accomplish these tasks. chronic fatigue often means that even waking up from a nap or night's rest requires time to adjust to and power through

waking up is a process for me. im often no more alert and awake hours after i've woken than I am right after doing so. caffeine does not help fatigue- at least not at safe doses, for me, anyways. many days the act of moving from my bedroom to my living room is too much. taking dishes to the sink can be too exhausting. i have began falling asleep in front of the kitchen counter while standing because i realize the amount of steps required to clean the counters, or do the dishes, or prepare a meal that all of my energy instantly bleeds away

it's okay if you feel this way too. i have been dealing with chronic fatigue my entire life and it cost me my best paying job. i lost my ability to work because of it. it's not just you being "sleepy", you are genuinely too exhausted to function. you do NOT have the energy levels other people do, and that's okay. it's okay to let yourself be tired sometimes and address that instead of trying to pretend you're not tired.

i wish you good luck. you are loved

[potsiepumpkin]

Useful information

[boyfailurr]

being disabled has an affect on the social life that not many people are willing to discuss . the reality is, being disabled means missing out on a lot. the queer bar you think everyone should go to isnt accessible. nobody in your towns high school was willing to talk to the only kid with down syndrome there. not all autistic people were accepted enough to be social in the first place, much less doing drugs and having sex.

there are so many experiences to miss out on

[clownrecess]

Happy disabled pride month to disabled people with undiagnosed physical disabilities

Happy disabled pride month to disabled people with undiagnosed mental disabilities

Happy disabled pride month to mobility aid users

Happy disabled pride month to disabled people who are in constant pain

Happy disabled pride month to AAC users

Happy disabled pride month to disabled people with ableist family

Happy disabled pride month to fat disabled people

Happy disabled pride month to disabled people with scars

Happy disabled pride month to disabled addicts

Happy disabled pride month to disabled people who's disability is progressing

Happy disabled pride month to disabled people who love their disability

Happy disabled pride month to disabled people who hate their disability

Happy disabled pride month to disabled people with underrepresented and/or uncommonly known disabilities

Happy disabled pride month to all disabled people. I love you. /p