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#longcovidawarenessday

11 posts8 participants5 posts today

In Feb 2020, I went to New York for work. A month later, I could barely walk to the store across the street. Brain fog got progressively worse. It took me almost a year to start being able to walk minimally again and for the fog to clear. I still remember the day I woke up with mental clarity for the first time in 10 months. 3 years to fully walk long distances again with a rehab program.

It's #LongCovidAwarenessDay. I'm mostly functional now. A lot of people aren't. All the local long COVID specialist programs have had their funding dried up. I'm one of the lucky ones who got help, and got better enough to kinda sorta keep going.

What happens to the people who get long COVID now?

(This is a thread now.🧵)

Continued thread

I have a much harder time thinking these days. There are times I'm so tired that when I go to talk, I speak gibberish. I forget words all the time. Trying to find the word is like dragging my brain through a glue trap. I have a hard time reading any one thing for very long. I'm glad I can still write coherently, but I don't seem able to write much after supper. I'm also finding that I have an extremely hard time concentrating on much of anything after supper. I'm afraid I'll have to stop signing up for online evening classes because I can barely stay alert during them. It feels an awful lot like when I had mono back in 1989. #LongCovidAwarenessDay #LongCovid #Covid #BrainFog

Continued thread

As far as I know, I've only had COVID once. It was a "mild" case. It didn't feel any worse than a cold and a bit of a sore throat for me. And even though I was fully vaccinated, took Paxlovid right away, and rested very very hard for three months (going to bed whenever I felt even the slightest bit tired), I still ended up with long COVID. I was strong and healthy before. I trained five days a week at the gym and yoga studio and hiked on weekends.

I'm scared shitless about getting COVID again. I'm one of the very few people I know who still masks regularly. #LongCovidAwarenessDay #LongCovid #Covid #MaskUp

I was an athlete for years. I did fitness competitions, trail running, mountain running, obstacle course races, interprovincial bicycling, hiking, and martial arts. I was a professional dancer, an aerialist, a model, and a LARPer. These days, I spend the vast majority of my time sitting down. I go to the gym a couple of times a week and try to go for walks every day, but if I exert too much or think too hard for too long, I'm exhausted.

This is not the normal feeling of being tired after a grueling workout. It's not a mind over matter thing. It's the kind of fatigue you feel when you're sick or dealing with a nasty injury. #LongCovidAwarenessDay #LongCovid #PostExertionalMalaise #ChronicIllness

It’s International Long Covid Awareness Day, and my latest article looks at the reasons why people believe they don’t know anyone with Long Covid.

We desperately need increased visibility into this debilitating chronic illness so that we can raise awareness and fund treatments, mitigations and cures.

Anyone can get Long Covid. It’s not limited to ‘only the vulnerable’ or those who had a severe initial infection.

This disease does not discriminate. Even people with asymptomatic initial infections have found themselves disabled by Long Covid.

It’s time we start processing the trauma of the pandemic and stop living in denial.

We are in the middle of a mass disabling event, and the longer it takes us to admit that, the more people will be harmed.

Let’s spread the word that the only way to avoid Long Covid is to avoid getting Covid in the first place.

Wear a mask. Stay home when sick. Clean and ventilate the air.

When we all agree to care about the air we share, we can begin to bring about real change.

disabledginger.com/p/i-dont-kn

The Disabled Ginger · I Don't Know Anyone With Long CovidBy Broadwaybabyto

Five years into the COVID-19 pandemic, this global public health crisis isn’t winding down, and more people are developing Long COVID each year.
This week for #LongCovidAwarenessDay, we’ve compiled a fact sheet of up-to-date statistics & citations on Long COVID.
Data is one of the most useful tools to strengthen understanding of #LongCovid: patientresearchcovid19.com/202

For all slides, visit our Instagram:
instagram.com/patientled/

You'd think people would want to know if there was a disease that killed more Americans than all our wars combined and is still killing, that causes long-term illness at yearly rates higher than all cancers combined, that all are at risk for, but that all could take actions to prevent. You'd think they want to protect themselves and their families. You'd think that this would be the #1 world priority. It is for me.

Replied in thread

publichealthinsider.com/2024/0
via piaille.fr/@riotmuffin@ni.hil.
Bande dessinée mettant en scène l’histoire de Jesse, un activiste de BLM, ancien professeur de lycée, écrivain et musicien luttant avec le Covid Long. Cela fait partie d’une série de bandes dessinées qui méritent d’être partagées pour aider à sensibiliser et motiver l’action pour #LongCovidAwarenessDay et au-delà
(article et BD en anglais avec des Alt text en anglais, il y a une version espagnole disponible en lien dans l’article)

4/46

"Long COVID Awareness Day intended to do just that; create awareness through organized actions, many of them put on by disabled people struggling with day-to-day activities. Major media outlets ensured that the top “Long COVID” results on Google that day would be minimizing, unscientific propaganda instead of news about activists, their work, their message, and their illness."

thegauntlet.news/p/media-celeb

The Gauntlet · Media celebrated Long COVID Awareness Day by denying its existence By Julia Doubleday

This photo is from a protest at the CDC in 1990 by ACT UP.

The context between HIV/AIDS and Long COVID might be different but the government response is the same.

The “CDC Kills” banner was true in 1990 and it is true in 2024.

digitalcollections.library.gsu

#CovidIsNotOver

#LongCovidAwarenessDay

digitalcollections.library.gsu.eduACT UP demonstrators hang a banner reading "CDC Kills" from the roof of the Center for Disease Control, 1990

Just seen a poll on here that indicates that 39% of people don't know anyone with Long Covid.

It's something I've thought about often - I know very few people with Long Covid "in real life" - and *all* of the ones I know aren't people I know personally, rather they're people who are "my account manager's boss's wife" - that kind of thing.

Which makes me wonder - do any of you downplay it or, even, just flat-out lie about it?

Example: I am absolutely lying about the severity of it to my employer, because I was eking out my support payments from them, and needed them to think that I am returning to work at some point.

I also still hope that one day I may be able to return to work, and I don't want any "hm, not sure we should employ him, he has Long Covid" thinking going on (my industry is one of those where everyone knows everyone). This bleeds into some more personal friendships, particularly ones I've made through work.

Does anyone else do this?

For those with milk allergies or want to try something different, I just found a study of a mineral water and banana peel kefir that was studied for HIV treatment. (Includes the recipe/process)

Banana Peel Kefir: An Economic Potent Treatment for HIV-Infected Patients

researchgate.net/publication/2

It is even used as a preventative for HIV. something to add to diet for Covid.

#LongCovid #LongCovidAwarenessDay
#Covid

“To engage with the reality of [the #COVID] crisis, we need to understand how adopting an individualist approach to public health is destroying decades of labor activism, human rights progress, and hard-won protections.” #SARSCoV2 #LongCovidAwarenessDay thegauntlet.news/p/institution

The Gauntlet · Institutional COVID denial has killed public health as we knew it. Prepare to lose several centuries of progress. By Julia Doubleday