#neisvoid
Spouse made what are essentially steak enchiladas with a fresh verde sauce & my semi-crashed body decided it tasted cloyingly sweet. Smell & taste going bonkers was a crash thing for me ages before long covid, but I crash more often now so it’s a bigger issue.
Bodies are dumb.
#neisvoid
November 12, 2025 at 3:45 AM
This will be an agonizingly familiar read for every patient who’s encountered the 17-year lag in bringing scientific research from bench to bedside.

#NEISvoid #MECFS #IACC #LongCovid
November 12, 2025 at 3:03 AM
“Worst of all, once in that place, it’s near impossible to do the very things u need to to help yourself escape it. #Depression, quite literally, depresses your spirit, and when spirits are low, life loses all colour.”: buff.ly/yxqTbFh

by @apainprincess.bsky.social
#ChronicPain #NEisVoid #NEisVoid
How to Cope with Flare-Ups & Setbacks of Chronic Pain—with Tools to
A guide to coping with flare-ups, setbacks & extended flares of chronic pain—with tools to help you manage, recover & cope. Finding ways to live with chronic pain — even though so much is al
buff.ly
November 11, 2025 at 11:30 PM
Without getting into details: our society makes being sick & disabled & broke is far more traumatic than it needs to be due to choices actively being made & maintained by healthy & abled & wealthy individuals & that is not ok & I can’t believe this is how things actually are 🙇🏻‍♀️ #NEISvoid
November 11, 2025 at 10:12 PM
To whom it may concern:

This principle applies to self-talk as well as confrontations with other people. I doubt you could do better and still take decent care of yourself. If you could, you would be already.

#NEISVoid
Respect the “can’t”
People with disabilities and chronic illnesses will often say we “can’t” do something when technically, we can, but not without severe consequences we’re not willing to pay. Since, in my experience…
ischemgeek.wordpress.com
November 11, 2025 at 9:12 PM
#migrainechat #NEISvoid

Today’s atmospheric pressure forecast looks like this, which is not good for my head
November 11, 2025 at 8:19 PM
Cw health

Today I had two shoulder injections. Leg x-ray, now waiting to do blood work then breath test. #NEISVoid

Just another day NOT sitting around playing video games like Micro Mike Johnson thinks 🤬
November 11, 2025 at 7:23 PM
Today’s migraine brought to you by…
Spending so much time at the IVIG place waiting to get started despite my 10:45 appt time. I am exhausted after reclining and knitting (and forced socializing with a very talkative lady (54ish) who forgot her cell phone 😳).
#IVIG
#NEISVoid
November 11, 2025 at 3:42 PM
hi, don't have much capacity for new ways of wording things or new angles for getting contributions. I just keep asking and hoping for the best.

ko-fi.com/moriende
paypal.me/belzomalsh
CA/ven: kookysnell

#helpsky #maboost #signalboost #neisvoid 💕💸
November 11, 2025 at 3:03 PM
November 11, 2025 at 11:59 AM
.
.
.
CW death, MAiD/assisted suicide
.
.
.
Sometime in the next few years at most, I'm probably going to die. And I refuse to go the long way as my body slowly suffocates me.

If I can swing it, I want to be a guest at my own wake. Go out after a party with my favorite people. Not too soon, though.
November 11, 2025 at 4:37 AM
#migrainechat #neisvoid

My Dr called in a prescription and the pharmacy has informed me that it will cost $1355 to fill. I would like to try the medication but I’m going to pass. I can’t afford that!
November 10, 2025 at 8:14 PM
What's your favorite / best supplement company that can still ship to the U.S.? #NEISVoid #LongCovid
November 10, 2025 at 8:05 PM
#NEISvoid PSA

TIL patients and caregivers can get free access to Elsevier papers!

Email your request to patientaccess@elsevier.com and include confirmation you are a patient. Turnaround is 48 hours.

#LongCovid #MECFS
November 10, 2025 at 7:45 PM
I got two small donations from a platform that wasn't Bsky, but I really depend on Bsky, as it is my main source of visibility.

unfortunately, visibility does not always translate into goal progress.

I need help.

ko-fi.com/moriende

paypal.me/belzomalsh

CA/ven: kookysnell

#helpsky #neisvoid
November 10, 2025 at 5:29 PM
November 10, 2025 at 2:23 PM
I'm in this skeet and I'd settle for a temporary cessation of hostilities

Just to remember what it's like, for a few days

#NEISVoid
I wish my immune system would stop having opinions about everything
November 10, 2025 at 12:35 PM
“While I’ve lost my job and a portion of my functionality, I haven’t lost my ability to #adapt. I try and tell myself there are still things I can do.": buff.ly/pHTcekU

by twipblog23
#ChronicIllness #career #NEisVoid #disability
When Chronic Illness Puts Your Career and Life on Hold
When you live with chronic illness, it can often feel like life is in a constant state of limbo. You’re caught between the hopes of getting better and the harsh reality that things may never go back…
buff.ly
November 10, 2025 at 9:30 AM
You have to baby doctors too. Like, if you're forced to mention a mistake they made - god forbid - you have to talk about it so delicately and phrase it as if it wasn't their fault. #NEISvoid
November 10, 2025 at 5:00 AM
Finally a lil’ stoned, dammit. All it took was all my meds, which are considerable, heavy duty, you could even say, plus 43 million bong hits and 300 actual mg of cannabis capsules. Listening to George Winston, ffs. The light is dim, my bed is comfortable. Wide the fuck awake. #NEISVoid
November 10, 2025 at 4:59 AM
We've hit $250/635 and we've only got until tomorrow to get the rest! Retweets appreciated!

#MutualAid #HelpFolksLive2025 #NEISVoid #DisabilitySky #HelpSky

paypal.me/LAKnight89
venmo.com/LAKnight89
November 10, 2025 at 1:56 AM
For all of us who have been beaten down by this cruel world: You are seen. You are loved. Your efforts matter.

"All the hate
All the pain
That they've put you through
Only gave you the brave
That I see in you"

Brave (Plumb): www.youtube.com/watch?v=m1IZ...

Lyrics: www.azlyrics.com/lyrics/plumb...
November 9, 2025 at 10:49 PM
alright it's been awhile since I've gone non-verbal for Autistic reasons

but I am excited to confirm my suspicion that I can communicate with ASL even when mouth words are Not A Thing

#NEISvoid
#Autism

PS if you're interested in learning ASL too, I *highly* recommend Queer ASL

www.queerasl.com
HOME
American Sign Language classes for 2SLGBTQQIA+ people. Taught by Deaf Queers.
www.queerasl.com
November 9, 2025 at 10:31 PM
"With no clear answers to go on, it has been hard to stabilize a narrative about my current state: Am I #healthy or #sick? Is my condition alarming or just interesting?": buff.ly/B1FIwjt

via @newyorker.com
#NEisVoid #ChronicIllness #InvisibleIllness
Nobody Has My Condition But Me
Medical researchers find my genetic mutation endlessly fascinating. But being unique isn’t a plus when you’re a patient.
buff.ly
November 9, 2025 at 6:30 PM
the main side effect of my very first flu shot is painful thumbs. the first day was painful hands & legs like the old days, a reminder that my meds are working. but now all the pain as concentrated in my thumbs 🤪 #NEISVoid
November 9, 2025 at 3:11 PM