Epiphany hit me last night that I might have hypoparathyroidism. It would explain the worsening of some of my problems (POTs, fibro, muscle spasms & weakness, etc) & why my mouth is so damn dry lately. I need an Endo, just fighting the executive dysfunction to call
#spoonie #disability #NEISvoid

Thyroid ultrasound report came back. Nodule on the remaining thyroid is a little bigger but otherwise everything is unchanged and looks good
#spoonie #disability #NEISvoid

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

If y’all are ever like “Lēna, you’re such a genius”, please note that I just called my spouse panicking about “not having enough hands for this”.

The task in question? Replacing the ball on my nose piercing. Surviving a massive stroke ain’t all fun and shitposts. -Allēna #NEISvoid

Find your level of ability today.
Set a short timer for what you want/need to do. 5-15min. According to your ability.

It might get you started to do extra things too, but when the time runs out don't add any extra big tasks, just finish what you're doing.

Then reflect after, and the the next few days how it felt.

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

I do not have enough spoons
to process every new attack on me
and also fight for survival

all I'm able to do
is hope against hope
that someone stronger can hear me

and that they will recognize
that I'm not the only one
who needs the help.

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

I wrote my Disability Manifesto by thinking of all the Disabled people who have shaped my life. All the brilliant books I've read by Disabled people. All the art we've done, all the organizing we've done. Where we found ways to pace, work with our limitations, and where we won battles not despite our disability but of our Disabled selves.

https://reshapingreality.org/2025/04/15/birds-disabled-manifesto/

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

I still can't believe how sick I have become over the last 13 years. There's just so much loss. #NEISvoid #MECFS

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

Pain flares always leave me so wrung out. And more often than not, weepy and emotional.

Even when I have someone actively helping and taking care of me,it's so hard and isolating. And a bit scary if I'm being real.

Just feeling like one huge raw, exposed nerve right now.