Why do I only ever concern myself with the dampness of my cacti’s soil immediately after I have finished washing my hands? #ImTheProblem #FaultyLogic #YetToMakeAChange

How to recognize &/ treat Heat Exhaustion / Heat Stroke Source: www.health.mn.gov/heatplanning

🧵 "How to Apply For—& Receive—Your SSDI: Long COVID makes it tricky.Know the rules" longcovidmd.substack.com/p/you-may-qu... Blog with linked video recording Most of the advice is specific to SSDI rather than more generally useful internationally Also useful for other #spoonie #LongCovid #MEcfs 1/

Keep feeling bad about doing nothing, years of energy limiting chronic illness and I'm still bad at this

While I’m touched my phone thinks I use the word “tittle” with much regularity (not like I’ve never used it) but in this case I did (sadly) just mean title. #WordsAreFun #Typography #Autocorrect #ImSoFancy

Friends in the #PwME circle, I was trying to find an article but I'm drawing a blank. It was about why normal sleep hygiene doesn't work for someone with ME/CFS, and was written by a medical ME expert I think? If anyone knows what I'm referring to, please drop the link! #NEISvoid #LongCovid

Posting this again because a lot of people said they found it helpful! Guide to ALT text: www.perkins.org/resource/how...

I'm asking that, for this pride month, you commit to a $1 monthly membership (or more, if you can) to help keep me and my family going. It's also a great way to celebrate pride! ko-fi.com/joannablackh...

sorry i used whimsy on you but in my defence i'd run out of sarcasm

Automatic transcription can be much faster than manual transcription, but it's not as accurate. Humans can catch errors that software may miss because of background noise or poor audio quality. Always review and edit transcripts before publishing.

Hi #ChronicIllness Community (my #NEISvoid fam), how are we currently organizing our medical info/history? I have binders, dividers, tabs & too much paperwork. By body part? By speciality? What is the most intuitive way to catalogue it all? #MountainOfPaper #PoorTrees #MedSky #Medical #Organization

Help a Black queer disability community leader survive the SSI process as my lawyer appeals the most recent denial I'm hoping that w/ community help I can raise 💲to get help w/ food & r3nt $125 for food $1750 for r3nt by June 3rd $maelee21 V: @ Maelee-Johnson PayPal.me/maeleeJ ko-fi.com/maedaej

I’m not entirely sure what type of life my phone thinks I’m leading as it’s correcting my slight misspelling of “difficult” to “disco hot”… (not that I’m entirely opposed to that fantasy) #NEISvoid

Solidarity with and many thanks to those who have come before us #mecfs #MECFSAwarenessDay

Ohmigod, you guys… I’ve found the secret to stopping joint pain… Turns out garlic wards off more than just vampires 🧄👍🏼 /s #NEISvoid #Pain #IfOnlyItWereThatEasy #DontTryThisAtHome #ThanksPopUpAd #ThingsIWillNeverSay by #SeriousPeople

Mask up for yourself and for those who can’t. #WearAMask #Protection4All #PublicHealth #Equity

I'm too busy to do everything well so I will focus on doing it all very poorly

Still haven’t decided if cursing at inanimate objects is more helpful or hurtful #NEISvoid #LowPowerMode #ThatSpatulaDeservedIt

Women are too often dismissed when it comes to their health told it’s “anxiety”, “your age” or “all tests are normal” #LongCovid is following a pattern many women already know. Women living with Long Covid deserve to be heard, believed and supported. #IWD2026 #NoMoreGaslighting

@joyannreid.bsky.social proudly being a Cussin’ Christian is just …. *chef’s kiss* Who could ask for anything more?

Heartburn + MCAS + Vertigo + CCI Cannot please them all at the same time.

i need an emotional support perogi

The irony of trying to find my thumb brace while not wearing my thumb brace isn’t lost on me. #HeldTogetherByTape #LigamentsAreOptional #NEISvoid #IYKYK

I feel both seen and called out #NEISvoid Still, it’s a good + validating read.

The first autocompleted search result of “how to make bacon in mi” is “how to make bacon in Minecraft”. Thank you for your attention to this matter. #TheseAreTheDroidsIAmLookingFor #Naturally

Special shout out to my #NEISvoid peeps. May you keep on keepin’ on (and when in doubt, consider it could actually be the weather’s fault for your current ++ of symptoms)…

Every day is a workday for disabled people. Every minute of every day, many of us are “at work”. Disabilities are 24/7/365… we don’t get any time off. For example, last night I dreamt I was having a bowel operation and tests… I woke up in the pain I was in whilst dreaming.

Hits too close to home #NEISvoid

You work, then you recover from work. Rinse and repeat. No buffer. #NEISvoid

Thanks so much to everyone who donated and shared! I need many more donations before my next neurosurgery trip in 7 weeks — at least 1 more trip after this, if all goes well I’ll reapply for financial aid and flight assistance but may not get it, so please help! Link ⬇️ 1/2

And it will never been convenient.

I dare anyone, really, to guess what tv show this episode description is about: “Various events occur, in a certain specific order.” #YouHaveReallyPaintedMeAPicture

Merry Christmas to everyone pushing long COVID forward. The researchers, patients, advocates, clinicians, policymakers, etc. Thank you for the care and persistence. Millions are waiting under the tree, hoping Big Pharma shows up.

This is an abject failure of public health. And it's tearing society apart. Pandemics require collective action. "You do you" is not a viable or recognised public health strategy. It has created a vacuum populated with misinformation, disinformation, & eugenics. It never had to be this way.

Would love for someone to ask the lawyer who exactly he imagines will fund these trials/studies whose lack he’s opining #ACIP #YourTreat #WithWhatMoney

Is he saying that *ONLY* those that practice medicine have imperfect data? Implying, he, as a (medical) researcher—“[he’s] only licensed to practice medicine; [he’s] a researcher”— has perfect data? #ACIP #LiterallyUnbelievable #ShowMeThisMagicalLandWithPerfectData

Why yes, let’s just erroneous use the word “outlier”. It has no clear meaning in the epidemiological, public health, or statistics fields. #ACIP #ThisIsNotAYouDoYouThing #ITooHaveDissatisfaction

Did anyone’s ears also perk up when Malone said “the totality of the evidence as it exists today”? As in, not based on theoretical or hypotheticals. Shall they actually adhere to this statement? #ACIP #ShowMeStatisticalSignificance

This International Day of Persons with Disabilities falls on a flare day for me (of course it does), so I'll be short and sweet. Disabled people know what we need. Our expertise must drive, create, and shape systems that actually work for us.

#NEISvoid #TheMoreYouKnow

“Don’t let the bastards grind you down. I love you all.”

Holy pain-relief, Batman!? #AsIfThisWasNotHardEnoughAlready

People tend to think of discomfort as less bothersome than pain, but in some circumstances it can be much worse. Something to think about.

Shoutout to my fellow maskers!

“…health as discipline, illness as lapse.” A little too close to home.

Excuse me as I build a castle out of all the bricks they threw at me #NEISvoid #ThisISMeTrying #TaylorSwift #ThisMetaphorWorks