#ChronicIllness #ChronicPain folx: have you either created or purchased a clothing storage solution that doesn’t require much bending over?

There were floor-to-ceiling shelves in the little closet where I last lived, and it was so nice not to bend over too much to obtain the daily necessities. Kept the least needed items closer to floor level. Just pulled out a plastic bin to get what was needed. Can't build-out much in a rental, but would love ideas if you have 'em. Thanks!

Second day this week that I’ve woken up before my alarm in awful pain. I think it’s more weather related than anything, but it’s super frustrating.
#ChronicPain #NEISVoid

Call to action!

#MEAction has written a letter to NIH demanding full funding for the ME/CFS Research Roadmap

And they've asked folks to sign on to this letter:

https://airtable.com/appEwdLZCdtR0xwuv/pagMvv9RZYLxZiDFe/form

From the letter:

"NIH budget for ME/CFS is $13 million for fiscal year 2024/25– the lowest in comparison to its disease burden of any disease monitored by NIH"

Even if you don't sign please boost

Thank you!

@mecfs @longcovid

May is EDS awareness month in Massachusetts
https://ctdnewengland.org/2024/05/16/proclamation-for-eds-awareness-month-in-ma/

Top tier spoonie fashion accessory (no worries, was getting my first follow up ultrasound of my remaining thyroid half since I had the partial thyroidectomy last year. Gotta do it every year)

The whiplash of going from several good pain days and the imposter syndrome that comes with it…
To a day where everything hurts so bad I can barely walk. Ugh.
#NEISvoid #hypermobility #ChronicPain

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
1/