#chronic fatigue disorder
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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?
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#disability#chronic pain#fibromyalgia#chronic fatigue#chronic illness#long covid#sleep disorder#activism
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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.
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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.
#disability#actually disabled#young disabled#wheelchair user#cane user#chronically ill#chronic illness#chronic pain#chronic fatigue#functional neurological disorder#cripplepunk
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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"
#chronic pain is a bitch#chronic pain#chronic illness#chronic fatigue#chronically ill#invisible disability#disabled#disability#physical disability#disabilties#cripple punk#cripple posting#cripplepunk#autism spectrum disorder#actually autistic#autism#neurodivergent#autistic things#audhd
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"kill them with kindness" WRONG run them over in your wheelchair 👨🦼 👩🦼 🧑🦼 👨🦽 👩🦽 🧑🦽 👨🦼 👩🦼 🧑🦼 👨🦽 👩🦽 🧑🦽 👨🦼 👩🦼 🧑🦼 👨🦽 👩🦽 🧑🦽 👨🦼 👩🦼 🧑🦼 👨🦽 👩🦽 🧑🦽 👨🦼 👩🦼 🧑🦼 👨🦽 👩🦽 🧑🦽 👨🦼 👩🦼 🧑🦼 👨🦽 👩🦽 🧑🦽 👨🦼 👩🦼 🧑🦼 👨🦽 👩🦽 🧑🦽 👨🦼 👩🦼 🧑🦼 👨🦽 👩🦽 🧑🦽 👨🦼 👩🦼 🧑🦼 👨🦽 👩🦽 🧑🦽
#wheelchair#ambulatory wheelchair user#ambulatory mobility aid user#chronic illness#chronicpain#chronic disability#other chronic illness bs#chronic disease#chronically ill#disabled#fibromyalgia#undiagnosed chronic illness#disablity#chronic disorder#chronic pain#chronic fatigue#invisible illness#invisible disability#disability#physically disabled#disabilties#cpunk#cripple life#cripple problems#cripple punk#queer cripple#crip punk#undiagnosed chronic pain#joint pain#screenreader unfriendly
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my chronically ill best friend just said "I feel like the side effects part of a medication commercial" SO FUCKING TRUE BABE
#we have the same medical condition#pots#potsie#pots syndrome#chronic nausea#chronic joint pain#chronically ill#chronic fatigue syndrome#chronic illness#chronic pain#chronic fatigue#spoonie#invisible disability#disabled#actually disabled#gastroparesis#hypermobile ehlers danlos#ehlers danlos syndrome#hypermobility spectrum disorder#hypermobile eds#hypermobility#wheelchair#wheelchair user#mobility aid#cripple punk#cripplepunk
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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
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#i fucking wish it wasnt too for what its worth#disabled#disabilities#actually disabled#physical disability#physical disabilities#neurological disability#epilepsy#ehlers danlos syndrome#hEDS#hypermobile ehlers danlos syndrome#spoonie#chronically ill#chronic illness#chronic pain#chronic fatigue#crip punk#cripple punk#cpunk#c punk#seizures#seizure disorder#actually epileptic#disability culture#1k
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Reblog if you understand that disability is not a monolith and two people with the same disability do not have identical experiences ✨
#actually disabled#chronic disability#me/cfs#autoimmune disorder#chronic fatigue#chronic fatigue syndrome#chronic illness#chronic pain#disability#actually autistic#invisible disability#disabilities#sensory processing disorder#autoimmune disease#disabled#thyroid disease#fibro#fibromyalgia#hashimotos#high support needs#hyperlexia#autistic things#thyroid#cane user#wheelchair user#chronically ill#sensory issues#sensory overload#special interest
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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.
#positivity#disability#disabled#coordination issues#dyspraxia#apraxia#actually dyspraxic#clumsy#arthritis#chronic pain#chronic fatigue#learning disabilities#developmental disabilities#neurological disability#neurological disorders#repetition#repetition tw
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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.
#chronic illness#chronic pain#chronically ill#i’m so done#disability#chronic fatigue#mental illness#fibromyalgia#ocd#disability activism#invisible disability#cripple punk#angry cripple#mini rant#ehlers danlos syndrome#hypermobile eds#pots syndrome#potsawareness#generalized anxiety disorder#it’s ok to not be okay#disability allyship#cripple life#it’s not fair
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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.
#fnd#chronically ill#chronic illness#chronic fatigue#functional neurological disorder#actually disabled#cripplepunk#physically disabled
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Normalise mourning the life you may have had before chronic illness took over.
#chronically ill#chronic pain#migraine#disability#disabilties#functional neurological disorder#fibromyalgia#spoonies unite#spoonie strong#spoon theory#chronic fatigue#chronic illness#chronic migraine#spoonie struggle
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Friendly reminder that all emergency pull cords must touch the floor. This does not mean tied up or resting on something or a foot off of the floor. In the United States, the cord must be within 2-6 inches off of the floor, but the best length is 2 inches from the floor.
These pull cords are also much easier to see if they are red and are less likely to be pulled out of curiosity when they are red.
#informative#information#chronic illness#disabled#chronic disability#chronically ill#chronic disease#chronicpain#other chronic illness bs#disability#disablity#disabilities#disability advocacy#physically disabled#actually disabled#disability rights#invisible disability#chronic disorder#chronic fatigue#chronic pain#wheelchair user#wheelchair#cpunk#angry cripple#cripple life#cripple problems#cripple punk#cripplepunk
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I’ve never seen younger people using canes. That is why I use my cane with pride so that I may be the person that assures another that they have a right to stability. They have the right to the independence and support of a mobility aid. I hope that by living my life as I choose I may be able to drown out some of the rampant ableism being fired at the youth of our community.
#disabled#disability#ableism#chronic pain#chronic fatigue#mobility aids#wheelchair#cane#FND#functional neurological disorder#disabled community#disabled rights#living with a disability#cane user#mobility issues#disabled youth
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yeah. that's all i can say. others system wise might think diffrently but this how i feel - Chocolat
#chocolat's art#chocolat#sugar sugar rune#chocolat meilleure#disabled#disability#cane user#chronic illness#chronic pain#chronic fatigue#chronically ill#art#autism#autistic#autism spectrum disorder#actually autistic#autie#asd
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