This is a whole mood this week.
#ChronicPain #hypermobility #NEISvoid

Having a bit of an existential crisis today about my disability, because of how varied my day to day experience can be. Asking for this was hard. The fact that it didn’t surprise my doctor and he thought it was a good idea was somehow…harder?
#ChronicPain #NEISvoid #hypermobility

Appropriate #pacing and #rest are my body's best friends. #NEISvoid

How is everyone feeling?

What activism is happening in the Disabled Sphere?

How can we better support one another?

What ways can we make protests more accessible?

These are questions I've been thinking about lately. It's why I'm working on the collective access zine. (It's almost finished!)

EDIT: This was meant to start a discussion on what we're all working on and/or needing.

Having migraines and chronic illness flare-ups has been brutal. However, I still managed to update the Shared Moments: Book 4: https://archiveofourown.org/works/59837869/chapters/165907621 #Korrasami #FanFiction

It took me months due to how sick I've been. Writing is my main mode of coping, and when I can't use it to cope, I struggle with despair. So to finally finish that chapter and push it out to #AO3 ? What a relief.

I just need to find a new balance with my health, my writing, my coping, my activism, and my resting. Ugh, it feels overwhelming when I write it out like that. #ChronicallyIll #NEISvoid

PLEASE HELP ME ESCAPE!

Please #boost and share to other platforms.I don’t have energy left (see below).

Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the articles below is me.

Last year:
https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/

Now things are worse, I’m much sicker, being neglected and will die without a safe stable #home. Doctor’s words.

If not mentioned in the article, my father is a diagnosed #narcissist with #psychopathic & #antisocial tendencies by a #psychiatrist. He urged me get away from my father asap because he is not a ‘safe person’ & neither are the other family members who lured me back through the promise of help.They didn’t help they made me progressively worse to the point of almost incapacitation at stage of #illness.

A year later:
https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/

I’ve tried every level of government, every service and they simply won’t help.

Are able help? Please ask people in real life if they have somewhere for me to go. Could they take me in (I can pay small rent)? A lot people have ‘big house, not enough money’ problem. I can help!

Is anybody an #advocate? I desperately need help.

I would be incredibly grateful for any help beyond words.

Please read articles for full information.

Thank you for reading.

#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #Abuse #Housing #Dysautonomia #SocialWork #MedMastodon #PWLC #MutualAid
#HumanRights #Press #Housing #Journalism #MECFS #SevereME #Abuse #Neglect #MutualAid #Narcissist #Psychopath

For those whose disability makes it hard to write your own Alt-Text, the altbot is now privacy-centered, which means none of your data is leaking to unscrupulous cooperations.

I still think it's better and less prone to error when humans write Alt-Text, but it's nice to know this exists. #AltText #accessibility #disabled #NEISvoid

post link:

https://fuzzies.wtf/users/micr0/statuses/114172532499348433

I have been in absolute agony all day, and nothing I do is stopping it.

"Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical & mental wellbeing, study finds"

https://www.eurekalert.org/news-releases/1074887

Research on people with autoimmune diseases but people with other conditions will sadly be able to relate

@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@lupus @mecfs
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #MEcfs #CFS #PwME
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Home from the hospital, now navigating what little assistance remains in the US with additional ailments and need survival funds in the meantime. Food, electricity, plus need to get internet set back up so I can stay in steady communication with the world (and also not be bored).

@mutualaid @mutual_aid @MutualAidVisibility @disability @blackmastodon

https://ko-fi.com/bpsycho
https://www.paypal.me/longbongsilver
https://Cash.app/longbongsilver
https://venmo.com/u/longbongsilver

"These little-known bank accounts allow Americans with disabilities to save and invest"

Anyone heard of this before? Supposedly a change coming in 2026 to allow more to save... #NEISvoid #disability

https://apnews.com/article/able-account-disabilities-savings-439fe21204ff443a1c0d907a112b99a0

I've been feeling really crummy the last few days, so here's a solidarity selfie with other #spoonies having trouble. Lots of love, everyone. You're not alone.

[Marked sensitive for eye contact.]

SUDDEN EMERGENCY! 1st rent (500 dollars) for new apartment due before move-in in 1 week!
Disabled, in hospital, need move-in set up before discharge!! No other options!! NOTHING left!!

I ended up screwed over on my previous electric bill. Turns out when you cancel to move service the company around here retroactively charges you the difference between the budget billing and how much they *wanted* to charge you. It was either make them whole or not have electricity at the new place, they won't transfer otherwise.

@mutualaid @mutual_aid @MutualAidVisibility @disability @blackmastodon

https://www.paypal.me/longbongsilver
https://Cash.app/longbongsilver
https://venmo.com/u/longbongsilver

When the meds and heating pad combo hits *just right*
#NEISVoid #SpoonieLife

Disabled people are amazing. We're out here putting in 200% just to keep going while exhausted, in pain, sick, systemically oppressed, going through an unending cycle of doctor visits and medication changes and side effects, having to do the health research ourselves when medical professionals ignore us, living in a world that isn't designed with us in mind. Sorry not sorry able-bodied people but we're kind of more badass than you

Symptom: Coat Hanger Pain

I only learned about this term very recently, from yumpsuit on the Fediverse. Thank you so much for letting me know about it!

I am almost disproportionately thankful to have a handy description for letting people know what I’m feeling, as well as how to look for ways to try to mitigate the pain. Reading about Coat Hanger Pain resonated deeply, in a way similar to how I often feel when I get a diagnosis: a feeling of relief, connection, community, and hope.

Many people who have not been chronically ill see a diagnosis as a negative. Indeed, many disabled people are never told their diagnoses, and are never told they are disabled. This needs to change, because as Granite and Sunlight explained:

Many people are disabled for a long time before they get a diagnosis which explains what is happening to them, and there is a resistance in the medical profession to giving long-term diagnoses, especially for young people and for women with chronic conditions which lack good treatment options, because of an outdated belief that labels are limiting and they don’t want people to ‘see themselves as disabled’. The fact they are already disabled, already struggling, is why disability justice advocates are trying to help medical professionals change their approach to this. Most people just want answers and context for what is happening to them – not having a name for it doesn’t mean it isn’t affecting their lives. Diagnosis gives people access to context, support and community who can help a person manage the condition better, but these are not built into the medical response to disability. Despite these delays, the person is still disabled all that time, and still needs access to the support and adaptations which can help them live good lives managing their conditions.

For more information about this, I recommend Brianne of No End In Sight’s TEDx Talk, Disease Begins Before Diagnosis.

https://www.illmarks.com/symptom-coat-hanger-pain/