Wondering if the NEISvoid/disability community will find each other again after being scattered to the wind. Would love a map or list of people and what sites they are using now in one place. Where are people actually active and where do they want to be active? (examples: I can't figure out if the Discord is still invite only and many still can't get an invite to Bluesky)
#NEISvoid #Disability #Spoonie

Been having trouble with really bad diarrhea for a couple of days now, sometimes (but not always) triggered by eating. I’m hungry at the moment, but I really don’t want to even try going into the kitchen, figuring out what putatively innocuous food to attempt, & fixing it.

#MECFS
#IBS
#NEISvoid
#ImTiredOfThisMECFSGame
#CanWePleasePlayADifferentGameNow ?

Example of brainfog: Me reading post in my Home thread and thinking "I like that post. I should follow that person. Let me go check their bio." Then realizing it is my Home feed. I follow these people.

Then immediately repeat the process 2 more times.

#NEISvoid #BrainFog #ME/CFS #ChronicIllness

Here's the latest News in Brief from the Science for ME forum, a summary of news for the week starting August 28.

This 2-part summary includes news articles, research, advocacy, coming events, and more:

https://www.s4me.info/threads/news-in-brief-august-2023.34622/#post-492098/

@mecfs
@longcovid

#MEcfs #LongCovid #ChronicIllness #NEISVoid #Science4ME

Hey #NEISvoid and anyone interested..

I found this 20 pack of auras for $12. They are the same ones I've bought from other places/sold by Amazon directly.
https://a.co/d/eEtCbBc

It is really hard for me to see pictures of my very young nieces in school and social settings without masks. COVID has gone through their house more than once and it will happen more I'm sure.

I cannot imagine how upset I would be if the ME/CFS that I have lived with for almost 15 years was the result of something my parents had known about and chosen not to even try and protect me from.

#NEISvoid #chronicIllness #LongCOVID

I realized that my insomnia correlates strongly to my digestion/abdominal pain/diarrhea. Ugh. #NEISvoid

If doctors are so worried about addiction, then we could as a society do the following:

1. Give pain meds to those who need it to alleviate pain. Prescribed pain meds can be safer than forcing those in pain to find alternative methods to alleviate the agony. Stop forcing us to suffer.

2. Fund programs that assist and support those with addiction. Stop penalizing and imprisoning them.

3. Listen to patients and work with us to meet our needs!

#NEISvoid

The back pain is irritatingly bad today. Makes it hard to do much, so am in bed with a heating pad. Took Tynelol for the pain.

The only pain meds the doctor gives me is Tynelol, gabapetin for nerve pain, and the muscle relaxer. That's it. But it sometimes isn't enough.

I hate how stingy doctors are with pain meds. Like they're ok with suffering due to their irrational fear of addiction. Supervised pain meds is better than those going to other sources to dull the pain. #NEISvoid

Maybe you were careful in the early stages, & stopped later when governments started saying it was over. You can have participated in a number of ways, & what I say is still the same. If you're still alive & with us here on earth, it's never too late. We can't give up. We won't give up. Join us & spread hope. 🧵 #CovidIsNotOver #NEISvoid #ChronicIllness

Are there any #doctors here that can help me out with this prescription? I’d be so incredibly grateful.

#MedMastodon #Medicine
#ChronicPain #Neisvoid #Spoonie
#ChronicIllness
@chronicillness @chronicpain
@mecfs @neisvoid

Here's the latest News in Brief from the Science for ME forum, a summary of news for the week starting August 21.

This summary includes news articles, research, advocacy, coming events, and more:

https://www.s4me.info/threads/news-in-brief-august-2023.34622/#post-491127/

@mecfs
@longcovid

#MEcfs #LongCovid #ChronicIllness #NEISVoid #Science4ME

People stop calling when you don't have "fun" stuff to talk about any more. The life of a chronically ill person. Lonely as hell.

I accepted when friends disappeared years ago when I couldn't keep going to events or happy hours. Now the world is ok if I disappear (COVID) and my own siblings have stopped calling or texting.

Feeling really alone. Sorry this isn't a happy post, but that's kind of the point.

#disability #NEISvoid #isolation #chronicillness

Blarg. Jury duty summons. I take two different immune suppressants while living in a county with a 243.5% increase in #Covid cases over the last ten days.
We haven't eaten in or at a restaurant since late 2019. Yet, I'm supposed to sit with 250 of my neighbors in a courthouse basement and hope I don't catch a preventable disease that could kill me. #CovidIsNotOver #NEISVoid

I mean, knocking things over is kind of my thing.

#NEISvoid #Disabled #EDS #POTS #MECFS

As I try to stay hydrated today, I would like to stress that there is NOTHING wrong with using 2 hands to keep a glass, mug, or water container steady. I don't even use containers without lids (except for my tea, with which I live dangerously) because I will most definitely knock them over or pour water on myself.

#NEISvoid #Disabled #EDS #POTS

I've already thought too much today. I need to stop thinking. #fibromyalgia #neisvoid #disability

Raise your hand if you crashed this week, or are teetering on the edge of a crash 🖐️. Maybe if we band together we can crash together and lighten the load.

#disability #Neurodivergence #Neurodiversity #mentalIllness #mentalHealth #NEISvoid #chronicIllness #chronicFatigue #fibromyalgia #ChronicPain

I've been not eating enough mostly due to how hard it is to get prepared meals that are gluten free and dairy free (and actually TASTE GOOD). So today I feel awful.

My caseworker also takes so long to do anything, so I don't know if anything will come of the needs I shared with her. We'll see I guess?

#NEISvoid

Here's the latest News in Brief from the Science for ME forum, a summary of news for the week starting August 14.

This summary includes news articles, research, advocacy, coming events, and more:

https://www.s4me.info/threads/news-in-brief-august-2023.34622/#post-489895/

➡️ Note: Due to a mastodon bug the link preview shown below goes to top of thread. The link posted above goes to the latest news.

@mecfs @longcovid

#MEcfs #LongCovid #ChronicIllness #NEISVoid #Science4ME