🌱 I'm going to post this here too, we need $315 more to clear a negative balance! Boosts and donations help a poor, trans, disabled system. 💚

https://ko-fi.com/radicaldreamers/goal?g=0

20 / 335

#MutualAidRequest #MutualAid #CrowdFund #CrowdFunding #NEISVoid #Help #BegPost #DisabilityCrowdFund #TransCrowdFund #Fundraising #Fundraiser

"As was done with the successful metformin randomized trial shown to prevent Long Covid, participants were recruited digitally and sent the medication (be it active or placebo) via the mail. This is the concept of the direct-to-participant digitized clinical trial, at scale, through smartphone apps and websites, that my colleagues (especially Steven Steinhubl) and I introduced several years ago"
https://erictopol.substack.com/p/long-covid-mitochondria-the-big-miss
--
#LongCovid #fda #nih #DrugTrials #recover #NEISvoid

Slept 9 hours. Took an hour before trying to get up. Got back in bed and rested another hour. Tried to get up for Advil because prescription painkillers weren't doing enough, and every nerve in my back lit itself on fire. It was hard not to scream. Took Advil, went to the bathroom. Got vertigo and nearly collapsed on the floor. Managed to sit on the toilet until the room stopped spinning and my knees were maybe ready to not buckle. #NEISVOID #spoonie

Hier je me suis lavé les cheveux, ça devait faire une douzaine de jours que je ne l'avais pas fait et j'en pouvais plus.
Aujourd'hui j'ai des sales courbatures dans les bras.
Saloperie de maladie
J'ai mal
#pwME
#LongCovid
#NEISvoid

Mon nouveau pilulier qu'il est beau 😍
En espérant que ça soit utile à d'autres et sans prétendre réinventer l'eau chaude, voilà comment je m'en sers :
Le dimanche je le remplis. Chaque soir quand il n'y a plus rien à prendre je retourne l'étui du jour avec le nom en dessous et je le mets à la fin de la pile.
Ce qui fait que : ce que je dois prendre aujourd'hui est toujours dans le premier étui, et que je vois d'un coup d'œil combien d'étuis sont vides
#MaladeChronique
#NEISVoid

Are #pwME familiar with this Youtube-podcast?

It's called "Post-Exertional Mayonnaise". Anyone interested?

https://www.youtube.com/watch?v=RqBqMtvTRS8

#MEcfs #NEISvoid

Such a good read on what it's like to care for people with a chronic and debilitating illness
#pwLC #pwME #LongCovid #LivingWithLongCovid #NEISvoid #disability

One of the many great paragraphs:
"I do accept that this is my role now— I’m a writer and I’m a carer—but no one told me I’d be trapped in a time loop explaining this disease to a society which isn’t listening."

https://rob-obrien.medium.com/dont-forget-about-the-me-cfs-long-covid-carers-we-need-help-49f33b297096

#spoonie #disabled #wheelchair #NEISvoid #accessibility friends...

Anyone have a good resource for determining how accessible a city really is? How well you can get around with a wheelchair, how much you can see, how accessible the transit system is, etc.?

#ChronicIllness in #NYTimes
"Since my diagnosis I’ve thought often of my aunt, who has lived with progressive #MS for years. Without #HealthInsurance, she did not have access to advanced imaging, diagnostic testing, medication or lifestyle guidance until her disease was very advanced. Instead, she found ways to self-medicate. Now in her early 60s, she is immobile, hardly able to speak and unable to navigate social programs for which she is eligible"
Gift link
https://www.nytimes.com/2023/06/29/opinion/photography-multiple-sclerosis-chronic-care.html?unlocked_article_code=5dj4ya1bC7Gl1AIeWK54eqXdgbA6hsNWwwbak1ZDd7T_9suh3LnzYW6b3g106yQvq5dVWV5QGTVY4_QGYhbhllCSYkweF2DbsfVlYr3j4bVwwoI0GlqQQ7o9tL4hCS0jq1i9Uyepk6BGzhgS3MqcuIk0IvQEXhbKipDcxkjiT-qyn27JoFRsI0OlQm4MCBgX7zbjH2O1TG53qKggq2CiBAokcbEGPsMelA2eu2SBwzjVTsEKYc23dSOP4MuSCw2GtLkiIajnaRs-14sC3SoeW-nixSwSp2bCuYPQ0XlgTA2pvJz5vaYUocwASNI9hR37x_aTj_6gnAGFxJCGGT9XF9Guo7s7cTKTSEdxZh6iGv9De_vLdQ&smid=nytcore-ios-share&referringSource=articleShare
--
#NEISVoid

@Anjouschka
#ActuallyAutistic
#NEISvoid
Si vous avez des réponses 🧡

@p1nkyyy Zusätzlich zu den von dir verwendeten Hashtags vielleicht unter #NEISvoid (No End In Sight), das wird auch von ME/CFS-Leuten benutzt

It’s been nearly two hours since I had a Difficult Bathroom Session and I’m /still/ stuck lying down. I wasn’t even crashing at all beforehand. This /sucks/. :(

#MEcfs #IBS #NEISVoid

From the bird site:
s.e. smith 🐀 @sesmith

If you are a disabled person who uses a third-party reddit app for accessibility reasons, I want to talk to you! Writing a piece highlighting this issue since it's been poorly covered. Ping me: sesmith @ realsesmith dot com

#NEISvoid #Disability #reddit

Things are rough. My family's in the middle of a move, and we decided to change the address for my #Medicaid and #SSI so I could look for doctors before we were fully moved. Bad idea. Couldn't get them proof of address in time, now I have no health insurance and am running out of meds. We're reapplying but not sure what's next. Pain getting worse. Mom's planning on taking me to the new place Tuesday either to stay or at least go to Texas Department of Human Services. #ChronicIllness #NEISvoid

So for the first time (that I remember) I dreamt I was using a wheelchair last night.

I don't think I will really be using a wheelchair any time soon since I can't sit for very long and my arms are weaker than my legs.

But I think my subconscious is now figuring out that I am actually disabled.

Fellow #pwME, would you like to share about your process of coming to terms with being disabled?

#MEcfs #NEISvoid

It's so hard to feed myself when I know that anything I eat is going to *hurt.* #NEISVoid

the fucking depression that comes with all of the medical fuckery is *unreal* sometimes.

really doesn't seem like I am ever going to get adequate healthcare. it is fucking hard to be effective at work, effective at home, do the things I need to do, when 80% of my brain is occupied by "what do I do? there's no hope for me".

and I need my job to pay for my shitty ineffective insurance so the remaining 20% of my brain will go to work and I just won't clean or eat or be happy today. #NEISVoid

It’s 6:40am and no sleep. The worst commercials are aimed at insomniacs. 2 in a row referring to Covid in the past tense & a crooked carrot drug for men. Literally, crooked carrots. At this point I’d watch the ad with the bent carrots on a loop instead of the false post-Covid, nurses with no masks hugging people propaganda. *Internally screaming so I don’t wake the people who sleep.
#CovidIsNotOver #WearAMask #insomnia #PwME #NEISvoid

I got my diagnosis today.

It's been 33 years. One year ago I presented my self diagnosis to my doctor and asked for her official stamp of approval. Now it is finally done.

#MEcfs #peME #NEISvoid

[Automatic repost https://twitter.com/dystobot/status/1660729836942381063]

RT @HeartBravoFl: So new thing over the last year is my face pulls my jaw over to one side and my jaw has been dislocated, it pops, and can last minutes. People can hear my jaw popping when it happens! Yes, it hurts. #dystonia #ChronicPain #neisvoid #Chronicillmess #BrainNeuroma #TN #GP #MCAS etc https://t.co/XY4j8RMWT5