#Tag · bonfire.cafe

Alexis Bushnell

@alexisbushnell@toot.wales · 3 weeks ago

Dear brain fog,
I do not have time for you today.

Yours,
Chronically ill and refusing to change her life to reflect that.

#ChronicIllness #LongCovid #Fibro

gittaca boosted

bananamangodog

@bananamangodog@aus.social · 3 weeks ago

Perhaps the most frustrating thing about having a chronic energy limiting disability is other people's ignorance about chronic energy limiting disabilities.

Every time your self preserving actions, inability to do something, requests for accommodations, skeptical attitudes, or apathy towards my situation occur it diminishes my ability to do things. I'd absolutely be able to do more if everyone else either had a little compassion or would just fuck off alltogether.

#MEcfs #ME #MyalgicEncephalomyelitis #ChronicDisability #ChronicIllness

bananamangodog

@bananamangodog@aus.social · 3 weeks ago

Perhaps the most frustrating thing about having a chronic energy limiting disability is other people's ignorance about chronic energy limiting disabilities.

#MEcfs #ME #MyalgicEncephalomyelitis #ChronicDisability #ChronicIllness

scattershot

@scattershot@merveilles.town · 3 weeks ago

Jess Mahler and 1 other boosted

:banana_slug:

@thief@weirder.earth · 3 months ago

🚩 HOUSING EMERGENCY! $725/2500 OVERDUE by 1 day

please help my very #disabled #Indigenous friend cover utilities & rent. she's currently in the ICU with septic shock. she needs to be a safe house for her family escaping domestic violence & US fascism. she has a $100/day late rent fee & will be served an eviction notice on the 5th. you can buy her #jewelry below!

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@mutualaid #MutualAid #native #nativeArt #MutualAidRequest #beads #beading #creativeNatives #onlineShop #SmallBusiness #handmade #MastoArt #creativeToots #FediGiftShop #FediArt #OriginalArt #LGBTQIA #queerMutualAid #fascism #ChronicIllness #beautiful #shop #crowdfund #fundraiser #noAI #asexual #poverty #helpFolksLive2026 #emergency #urgent #design #winter #IndigenousMutualAid #art

a beaded hairpiece made by kiamichi for her sister. on an ivory colored background, sits a 3-petaled flower in pink, purple, and red opening beneath the sun in yellow and gold. under the flower are three shiny vibrant green leaves with rolled-up vines extending to the right and left of the flower in the center.

Linktree

mahtheyzhawey | Twitter | Linktree

Disabled Native mom/artist. Any help/sales goes to rent/survival funds.

Ko-fi

Buy Mahtheyzhawey a Coffee

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itch.io

The Girls from Pasadena by Erica Rivera

15 twisted, transfeminist modern fables

Cara Sutra

@carasutra@kinkycats.org · 4 weeks ago

Cried twice today so far.
Introductory online M.E. clinic meeting this morning with a view to getting more help plus assessment and diagnosis. It was quite emotionally heavy.
Plus the wire on my left hearing aid has decided to break, so I'm down to right side only, and it really highlights just how reliant I am on them both. Worried about the future & how I'll cope.
Could be worse but could be a lot fucking better as well.

#chronicillness #myalgicencephalomyelitis #deaf #hearingaids #Health

Bryan (he/him) 🇺🇸 🏳️‍🌈

@resplendent606@climatejustice.social · 4 weeks ago

Angela Antunovic boosted

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

Short blog post by K. Johnstone:

"'You'd get better if you just....' is bullying and we don't deserve it."

https://substack.com/@mecfs/note/c-203079885

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #LongCovid @longcovid #ChronicPain

K. Johnstone
4d
Making sense of ME/CFS

"You'd get better if you just...." is bullying and we don't deserve it.

People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'.

The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking.

It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies. — K. Johnstone 4d Making sense of ME/CFS "You'd get better if you just...." is bullying and we don't deserve it. People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'. The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking. It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies.

Substack

K. Johnstone (@mecfs)

"You'd get better if you just...." is bullying and we don't deserve it. People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'. The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking. It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies. The truth is we all try so incredibly hard. We've all tried a million different meditation techniques and supplement protocols. We all do everything we can to 'calm our nervous systems'. If that stuff worked, we'd all be cured. As chronically ill people, every day we endure a reality that most people can't even imagine, and don't want to imagine. "You'd get better if you just..." is their way of refusing to accept our reality. The person speaking is too cowardly to face the enormity of our illness, of what we have to endure in our lives, so they try to make it smaller. They try to make us smaller. "You'd get better if you just...." is aggressive. It's bullying. The person speaking doesn't see themself as a spiteful bully, but that is what they are. Underneath the barely-concealed contempt, is fear. We don't deserve any of it. (As a little post-script, I want to 'confess' that I actually lean really hard into all the mind-body stuff. I do mindfulness exercises several times throughout the day, I do breathwork, I do a tiny bit of very gentle yoga, I do self-massage. Living with chronic illness is a daily struggle and that stuff helps a lot with my emotions. But it hasn't cured any of my chronic illnesses. It infuriates me that the people who tell me to do mindfulness are actually talking about the basic 101 version of mindfulness, when I'm already doing that shit at PhD level.)

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

Short blog post by K. Johnstone:

"'You'd get better if you just....' is bullying and we don't deserve it."

https://substack.com/@mecfs/note/c-203079885

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #LongCovid @longcovid #ChronicPain

Substack

K. Johnstone (@mecfs)

Alex, the Hearth Fire and 1 other boosted

Jennifer Moore 😷

@unchartedworlds@scicomm.xyz · 4 weeks ago

Google Docs

Covid Conscious Communities Survey

**You must be at least 18 years old to fill out this form** Note: in this survey I use the term "Covid conscious" to refer to anyone who takes precautions against getting/spreading COVID-19. I recognize that some people prefer to use other terms, or might feel that they do not take enough precautions to be considered Covid conscious. Anyone who recognizes COVID-19 as a harmful disease that needs to be mitigated is welcome to fill out the survey. Hi, my name is Jamie and I am doing my master's thesis on Covid conscious communities. I am a social anthropology student at Stockholm University. I myself am Covid conscious and chronically ill/disabled, and with my thesis I hope to highlight the importance of Covid conscious communities and the many things that can be learned from them. In my thesis I will argue against narratives that pathologize Covid conscious people. My main research question is: how do Covid conscious communities resist harmful societal norms and systems? This survey is one of several ways that I am gathering data to help answer this question. Filling out this form is completely voluntary, and you can skip any questions that you don't want to answer. Feel free to scroll through and just answer the questions that you have the energy to answer. Partial answers are welcome. Your answers can be as long or short as you want. If you have any questions for me, you can write them (and your email address) in the final question box and I will do my best to get back to you. Everything you write in this form will remain anonymous. Thank you so much for taking part in this survey! Please share it with your Covid conscious friends if you can! This survey will close in March 2026. Project supervisor: Ivana Maček

Jennifer Moore 😷

@unchartedworlds@scicomm.xyz · 4 weeks ago

Google Docs

Covid Conscious Communities Survey

Alexis Bushnell

@alexisbushnell@toot.wales · 4 weeks ago

Didn't take my antihistamines long enough before I had a shower and now my body is angered.

Can you get that E45 type body wash in a bar?
I'm thinking of switching to something like that to see if that helps reduce the rash, itching and burning of showering but would prefer to avoid plastic if I can.

#ChronicIllness

Alexis Bushnell boosted

Tom Kindlon

@tomkindlon@disabled.social · last month

“Disability at home”

“This website documents the ingenuity and creativity that caregivers & disabled people, including those with chronic illnesses, use every day to make home accessible.” (repeat)

https://www.disabilityathome.org/

#disability #chronicillness #disabilityaids #disabled #caring #caregiving #spoonie #spoonies

Tom Kindlon

@tomkindlon@disabled.social · last month

“Disability at home”

“This website documents the ingenuity and creativity that caregivers & disabled people, including those with chronic illnesses, use every day to make home accessible.” (repeat)

https://www.disabilityathome.org/

#disability #chronicillness #disabilityaids #disabled #caring #caregiving #spoonie #spoonies

Alexis Bushnell boosted

Brennan Kenneth Brown

@brennan@social.lol · last month

The Pandemic Never Ended. We Only Pretend it Did | 🔗 https://brennan.day/the-pandemic-never-ended-we-only-pretend-it-did/

#PublicHealth #COVID-19 #ChronicIllness #MedicalEthics #SocialCommentary

brennan.day

The Pandemic Never Ended. We Only Pretend it Did

Six years into COVID-19, the world has moved on while the virus continues to disable millions. An examination of the ongoing pandemic, long COVID, and our collective failure to prevent a mass disabling event.

Alexis Bushnell

@alexisbushnell@toot.wales · last month

Part of my learning to be disabled process is clothing.
I'm a big dungarees fan, but they aren't practical for working from bed. So I have bought some second hand Lucy and Yak trousers which are stretchy waist bands, slouchy style, but still outdoor clothes (i.e. not pyjamas) so I can get dressed but still be comfortable even on bed.

It is such a huge learning curve, becoming disabled. So hard to figure out what you need and what actually helps.

#ChronicIllness #Disabled #ActuallyAutistic

Alexis, a woman with light skin tone and bright pink hair sitting cross legged on a bed. She is wearing a pale pink t-shirt with a space ship hovering above mountains on it and text around it reading get in losers, we're doing butt stuff. Her trousers are loose Lucy and Yak casual ones in pastel purple, pink, green, yellow and orange with some black splashes. On the bed behind her is a small fluffy white, black and brown dog.

Alexis Bushnell

@alexisbushnell@toot.wales · last month

I've just launched a GoFundMe for my friend who desperately needs a scooter/powerchair. Her current one is far too heavy, damages her back, and is now also dying, meaning she is basically stuck.

She has a whole bunch of illnesses including COPD, long covid, and is neurodivergent.

If you have some spare cash, it would be so appreciated.

Boosts encouraged.

Link: https://gofund.me/b18f80fc3

#Fundraiser #Disabled #ChronicIllness

Brennan Kenneth Brown

@brennan@social.lol · last month

The Pandemic Never Ended. We Only Pretend it Did | 🔗 https://brennan.day/the-pandemic-never-ended-we-only-pretend-it-did/

#PublicHealth #COVID-19 #ChronicIllness #MedicalEthics #SocialCommentary

brennan.day

The Pandemic Never Ended. We Only Pretend it Did