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#and me/cfs
capricorn-0mnikorn · 3 months
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Full Transcript at the link; 3-minute listen.
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By taking biopsies from long COVID patients before and after exercising, scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.
Among the most striking findings were clear signs that the cellular power plants, the mitochondria, are compromised and the tissue starved for energy.
"We saw this immediately and it's very profound," says Braeden Charlton, one of the study's authors at Vrije University in Amsterdam.
The tissue samples from long COVID patients also revealed severe muscle damage, a disturbed immune response, and a buildup of microclots.
"This is a very real disease," says Charlton. "We see this at basically every parameter that we measure."
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hellyeahsickaf · 3 months
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I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)
It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:
How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.
Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."
How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills
How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud
Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides
Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance
Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!
There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.
Please boost!
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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
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araekniarchive · 8 months
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@mnvart // Kaveh Akbar, 'Calling A Wolf A Wolf' // @PinkRangerLB on Twitter // @kosmogrl // @devinsturk, '15 Proverbs for the Fellow Chronically Ill' // Jasmine Deporta // Anaïs Nin, House of Incest // the gentle wisdom uquiz by @inkskinned // Rora Blue, 'Sweet Dreams' // Hala Alyan, Dear Layal
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chronicallycouchbound · 7 months
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I’m allowed to be lazy. Disabled or not. Laziness isn’t an inherently bad thing y’all just too caught up in hyper capitalist hustle culture to care. I don’t owe you productivity. I’m allowed to rest.
My rest is radical.
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unveilandresist · 3 months
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by January 10th 1 in 3 people will have had this wave of covid. covid causes long term damage with each infection and wears down your immunity. you do not want this. there is no cure for long covid or me/cfs and there is a significant chance (last I checked I think it was 1/5 infections) of getting long covid that increases with each infection. please protect yourself and your loved ones by wearing a mask. variants have become more transmissible so a n95 or kn95 is the minimum protection to keep yourself reasonably safe(r) from getting covid.
it is important to understand often viruses do not simply clear up and go away. like chicken pox and shingles or what we now think of as polio that is actually post polio syndrome. polio symptoms were mild and 75% of cases are asymptomatic. we do not yet see the full scope of what this virus will do over our lifetimes. as someone who had my entire life derailed by me/cfs after having mono, (almost 10 years ago! it hasn't gotten better!) we have to take pathogens more seriously if we care about ourselves and our communities.
I'm willing and open to talk with people who want to understand better what covid does to our bodies and how we can best practice community care and also harm reduction if we're stuck in unsafe situations at home or work (certain mouthwashes and nasal sprays can help).
if you're watching what's happening in Palestine and live in the US, the government doesn't care about your life either. They lied about palestine and they lied about covid too. It is not just a cold.
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chronicallydragons · 2 months
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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
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You know I’ve been thinking, there should be no guilt in experiencing happiness as a disabled or chronically ill person. We don’t need to suffer every waking moment to justify our experiences and our truths.
Joy is a universal right. And that includes us.
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crippledpunks · 27 days
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chronic fatigue is such a bitch because it's not super obvious at first. it creeps up on you some days, but other days, that's just the entire day. you start your day exhausted as hell, and like yeah, you're aware that you're tired, but you blame yourself for feeling this way. it's always your fault somehow. then comes the end of the day and you realize that it was your chronic fatigue, and you blame yourself for beating yourself up all day long. you can't win
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rosegardeninwinter · 11 months
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we interrupt your regularly scheduled dystopia to bring you this absolutely ✨swoon✨ worthy moment
some observations I’ve made before but which still make me unwell: how this whole exchange feels less like reconciling friends as it does a reconciling husband and wife, how Katniss says her motivation in not being affectionate with Peeta is to spare Gale hurt, how she says he will think (not know, but think) she is acting (almost like she’s not??)
and of course, oh, the way they collapse into each other … Peeta immediately burying his face in her hair … oh, he missed her so much you just know he did … the comfort level they have with each other!!! and Katniss, feeling his warmth run through her … feeling “so good, so impossibly good” like I feel like I need to look away … it’s an exquisite moment you just know Suzanne was so pleased with herself writing it
also, Katniss hugging Peeta so he won’t make her do push ups? she’s so funny I love her
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drifting-bones · 5 months
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they should invent walking that doesn't make you feel like you're going to keel over and die
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fernthefanciful · 2 months
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Please please please I am BEGGING y'all
When you visit someone who is chronically ill or disabled and their house is not as clean or tidy as you'd like: just don't say anything
We *know* okay.
Trust me, we know
We'd love to see it differently too. But the truth is we *can't*. And you know this, you do!
So please. Just shut up. Don't pile on more guilt and feelings of inadequacy. We have enough of our own
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hellyeahsickaf · 1 month
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When I say "I can't do that" what I'm not saying is:
I don't feel interested in doing that
I don't care enough to
I'm too good to be doing that
I don't think you deserve that of me
I'm not in the mood to do that
Not now, I'll do it later
Maybe
If that's what I meant, that's what I would say
What I am saying is:
It will negatively affect me in ways I can't afford
I simply can't physically fucking do that
I can't risk the potentially severe consequences I may experience if I overestimate my ability to do that
And if I explain that I am unable to do that, it is not an invitation to:
Tell me how much my disability hurts your feelings
Ask if I'm sure
Interrogate me because you believe yourself to be the judge of how unwell is unwell enough
Put words in my mouth ("why don't you care?")
Tell me how easy it would be
Remind me of how many other things I've been unable to do. I keep the score more than you do
Accuse me of exaggerating or faking to avoid doing it
Ask me again shortly
Make assumptions about additional explanations. (I must be mad at you, I must not care about this)
Offer compensation in return ("I can pay you" "we can do something you want to do after" "I'll get you something you like")
Ask what it would take for me to suddenly be capable of doing it
Tell me how you do things you have to do when when you're tired and then you can just rest and recover. I am not like you
Remind me of a time I was able to do that. Either I had more spoons or was less severely disabled if at all.
Say that if I was well enough to do X today, I should be able to do this as well. Energy doesn't work that way. Are you capable of running 8 miles right this minute just because you were okay to work a 10 hour shift today? That's what I thought
Suggest simply doing it a certain way ("take your time", "do it sitting down", "we can stop and take breaks", "just take your painkillers", etc)
But it is an invitation to:
Leave me the fuck alone about it 💕
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thatchronicfeeling · 9 months
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July is Disability Pride Month
Let’s celebrate by keeping disabled people ALIVE and SAFE.
Want to know how you can help?
WEAR A MASK. 
(FFP2/3 or N95 give best protection, especially the ones that fasten behind your head)
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cannabisbutch · 9 months
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I hope every disabled person with chronic fatigue has a restful disability pride month
🛌🏼💤💙
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Somebody shared the following today saying: "I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I relate so much" Here's the TikTok link: https://www.tiktok.com/@jeremyandrewdavis/video/7135061608316833070
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