#chronic fatigue disorder

[enbycarp]

Oh, speaking of tired, do i know any me/cfd bitches? I'm wondering, when you experience dizziness, is it worse during periods when you're particularly exhausted? Or is it all the time? Or does it just come and go randomly?

[purrfurnax]

[scottguy]

Doctors have always been quick to write off what they don't understand. They take it personally because modern medicine (which is ONLY) about 125 years old) made them all feel like Gods. They just won't admit they don't know, so they blame the sick patient.

Arrogance is just baked into the system as well as medical schools - because medicine is hard to learn, selects those with good cortexes but little emotional intelligence. (I find the two are often at odds, you get one or the other.)

A lot of doctors can tell you the treatment, but understanding that *compassion* is part of the process of delivering care is totally alien to those ostensibly "smart" people.

Here, in the west, we "treat" and usually just the affected part. We DON'T care for the entire person, especially patients' emotional needs and questions, which are just routine to the doctor. Doctors can't be bothered to take the time to explain, especially in our American system, which is about maximizing profit and seeing 40 patients a day. (Which leaves precious little time for any meaningful interaction.)

Not all doctors are like this, but even the well-intentioned get pressured by our ridiculous for-profit (for shareholders) system.

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.

[love-me-love-my-weirdness]

Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

[minimallycreative]

autism "i need my routine and the routine was already ignored yesterday" vs chronic pain/disability "good fucking luck dude. you got no bones today"

[tumble-tv]

"kill them with kindness" WRONG run them over in your wheelchair 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽

[a-sassy-bench]

breaking news disabled people aren't using their disabilities as an excuse because it turns out it isn't an excuse it's a state of fucking existence

and existence is everywhere all the time no matter what even if you wish it wasn't

.

[stellaltumi]

my chronically ill best friend just said "I feel like the side effects part of a medication commercial" SO FUCKING TRUE BABE

[vm-sys]

shout out to clumsy people.

shout out to people with coordination issues.

shout out to people with dyspraxia.

shout out to people with apraxia.

shout out to people with muscle weakness.

shout out to people with paresis.

shout out to people with paralysis.

shout out to people with arthritis n/or joint deformities.

shout out to people with chronic pain whose pain makes it hard to control their movements.

shout out to people with chronic fatigue whose fatigue makes them hard to control their movements.

shout out to people with balance issues.

shout out to people with other conditions that make hard to control body n/or movements.

shout out to people who are undiagnosed n struggling with control movements.

it's not your fault. it's not your carelessness. you deserve support n accommodations. you shouldn't be judged or mocked. you deserve respect. your struggles deserve respect.

[panicismydefaultstate]

Just in case anyone else needed to hear this today-

Your health is not your fault. You didn’t do anything to “deserve” this. And you are right, it isn’t fair. You are allowed to feel upset, hurt, angry and jealous that your health, body or mind disables you.

It’s not fair, and that sucks. You are allowed to scream about that as much as you need to.

[mami-chaos]

Normalise mourning the life you may have had before chronic illness took over.

[dreamdropsystem]

yeah. that's all i can say. others system wise might think diffrently but this how i feel - Chocolat

[love-me-love-my-weirdness]

Sometimes I don’t think people get that chronic means chronic. It means forever. I’m going to be stuck with this for the rest of my life and I’ve had to learn to make peace with that myself. Telling me ‘hope you get better soon’ and ‘it won’t always be like this’ is pointless because you’ve completely ignored the definition of chronic illness.

[crippledpunks]

if you are a disabled person of any severity and can make it through a grocery shopping trip, i am proud of you and look up to you. if you can't make it through a grocery shopping trip for whatever reason, pain, anxiety, psychosis, ADHD, autism, depression, memory or attention issues, fatigue, exhaustion, irritability, confusion, dissociation, or anything else, you have my condolences because i'm right there with you, that shit sucks ass. it's needlessly complicated and its something that abled people take for granted

of course disabled people cant go across the entire store to put an item back every time. of course disabled people may need help getting items from high or low places. of course disabled people will get lost even in labeled places because of object blindness, blindness/eye problems, bad attention span, anxiety, or other issues, of course there are who can't make it through the entire store without collapsing

these stores are designed to confuse customers and trap them inside for as long as possible to increase impulse spending, of course disabled people are going to struggle to navigate the store. i love you if you're disabled and can navigate the store, kudos to you, but i also love you if you can't. it's not easy and people take for granted how easy it is for them when others can't do it at all

[tumble-tv]

Some people don't understand why I would voluntarily go through the pain of piercings (and soon tattoos) when I'm already constantly in excruciating pain.

My answer? Because it's the only pain I have control over, and it makes me look cool. I can't control how my joints ache or how my skin burns, I can't control the migraines or muscle spasms, but I can control the piece of metal in my face. I can control the breaking of my skin to add jewels and color. I can control the needles putting ink under my skin to make my body into the art I always admired.

The pain from piercings and tattoos goes away in a few weeks at most. The other pain doesn't. I like having at least a little control over my pain.

[itwasntaphase]

Strange Sensations I crave:

1: taking my spine out and wringing it real good so it cracks every area and helps the pain (fuck scoliosis)

2: taking my eyes out and putting them into a glass of cold water (refreshing for dry eye)

3: Take my skin off and give it a very good scrubbing and moisturizing (no more itchy eczema)

4: taking my brain out and deep cleaning it then soaking it in an ice bath (I'm convinced this would cure my migraines)

5: Scratching behind my eyes (they are often itchy)

7: eating my many pica cravings without it causing issues (i.e. sand, foaming soap, decorative bar soap)

8: taking my muscles apart and soaking each one in a warm bath and then giving it a deep massage (bye bye achy body)

9: Pulling my sinuses out and rinsing them thoroughly (I think it would help my allergies)

10: removing my bottom jaw to give me a break from my TMJ for a while (self-explanatory)

Please reblog this and add yours so I know I'm not crazy in wanting these things. My therapist says these are symptoms from my OCD so that's fun.