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

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.

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

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/

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.]

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

"Meet the Americans who still take COVID-19 precautions seriously"

https://www.news10.com/news/national/ap-vulnerable-americans-live-in-the-shadow-of-covid-19-as-most-move-on/

Image is from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19
@chronicillness
@spoonies
@disability
#neisvoid
#chronicillness
#chroniclife

Flare from self defense class has now been a full week - aggravated, I’m sure, by car travel and sleeping in a strange bed. I’m ready to return this defective body now. #NEISvoid #ChronicPain

I am getting to the stage of my life where I now understand why my grandfather mostly refused to travel - he always said that there were too many things to pack and remember and organize at the place he was visiting.
As I look at my suitcase full of heating pads, mobility aids, and massagers…yeah, I get it.
#ChronicPain #NEISvoid

Oh nothing much going, just using my heated blanket as a whole body heating pad because everything hurts…
#ChronicPain #NEISVoid

I'm considering writing a #Blog post about how #Technology can be more #Accessible and #Inclusive for people with #Disabilities and #ChronicIllness. One example that comes to mind is the need for more personalized customization in health tracking features on #Wearables like the #AppleWatch.

For me, the exercise and stand goals aren’t realistic due to my health limitations. On bad days, the constant reminders to move can feel discouraging rather than motivating. While there’s the option to turn notifications off entirely, I still want to track my movement or standing progress in a more flexible way. It would make a huge difference if the activity rings and goals could be fully customizable to accommodate individual abilities and needs.

To my fellow #Disabled and #ChronicPain warriors: What other areas do you think tech could be more inclusive? Whether it’s device features, apps, or software design, I’d love to hear your thoughts! Would you also be okay with me including your name or username and a quote from you in the blog post? I want to uplift your voices as part of the conversation.

Although this post is meant to elevate disabled voices, developers, designers, and usability experts are welcome to join the discussion and learn how to create more inclusive tech.

Let’s brainstorm ways to make tech work better for everyone! Thank you in advance for sharing your insights!

#DisabilityRights #InclusionMatters #Accessibility #PWD #TechForGood #AssistiveTechnology #UX #DigitalInclusion #HealthTech #NEISVoid #Disability #Blogging #WordPress #WebAccessibility #InclusiveDesign #ContentCreation

@disability@a.gup.pe @disability@beehaw.org @disabilityjustice @mastoblind @main @actuallyautistic @spoonies @a11y @disabilitytech @accessibility @blind @neurodivergent
@neurodiversity @neurodivergentblind @spooniechat @chronicallyill @wordpress @technology @opensource @disabilityadvocates @accessibledesign @programmers @usability

Another depression self-portrait, but make it Fantasy™ this time.

Reminder: #MEAction is giving away 2 copies (one paperback, one audiobook) of the book "Pillow Writers Anthology 1: Near-Life Experiences"

Their "Chronically Complex" podcast has extracts from the book:

https://www.meaction.net/chronically-complex-meaction-podcast/

Deadline for entry is December 15, winners will be selected the next day

I can't find an announcement on the #MEAction website but here's a link to what they posted on Bluesky:

https://bsky.app/profile/meactnet.bsky.social/post/3lbkjfa4w6c2t

@mecfs

It's cold and raining, so guess who is in extra pain, has extra vertigo, and still had to go to get medical tests done? At least it wasn't super far from my house and I had the 15 bucks to uber home
#disability #NEISvoid #complaining