Coyote Jones · @coyote_jones
120 followers · 6 posts · Server toot.cat


This March marks 3yrs living with Post-COVID complications.

While some of the minor symptoms have improved over the last couple years, there are many that refuse to relent ( , severe , neuropathy, muscle weakness, migraines, tremors, brain fog, tinnitus, etc). It took over 2 and a half years to find a medication that provided any substantial improvement, and even that took finding a provider willing to reach out to the right researchers for options. I will also be heading to Northwestern’s neurology dept. in a few weeks to continue testing, so I’m crossing my fingers for an increased momentum of progress this year. If nothing else, being a data point feels like an important part of the journey.

Unfortunately grief has also become a huge factor in this process. Becoming disabled in my 30’s was not in my life plan (especially just months after completing undergrad and moving across the country). Coupled with the state of *gestures broadly at everything*, it’s hard to really wrap my head around this new normal. Whatever dreams and aspirations I had before are simply no longer realistic, and it’s been a struggle to reimagine personal expectations for the future, alas I’m doing my best to do so.

In my experience, Long-Haul / Post-COVID Syndrome isn’t frequently discussed or acknowledged outside of the medical field (and even then it’s a mixed bag). Not to mention there’s a large percentage of folks who vehemently deny its existence entirely.

I’ve only shared a tiny fraction of this journey publicly (on other platforms) and sometimes I wish I’d had the strength to share more of my experience for the sake of awareness and advocacy, but to be frank, the politicization of the pandemic coupled with my exposure to COVID-denying family, friends, and community members became a detriment to my mental health. Battling the long term affects of a new virus in real time is a psychological hellscape of its own without also being expected to defend the reality you’re living in. Fortunately I’ve had access to mental health resources during this time, and I can’t stress enough how dire my situation would be without that support.

I often wonder if we’ll ever truly comprehend the long-term consequences of this .

#postCovidsyndrome #covidlonghauler #chronicillness #pots #chronicfatiguesyndrome #pandemic

Last updated 1 year ago

Vikram Jha · @invinciblejha
20 followers · 149 posts · Server diya-mastodon.com

RT @fi_lowenstein@twitter.com

here's how you can get involved:
📣 If you are a patient / , please fill out this form so we can include you on the list: tinyurl.com/2xc4265r
📣 If you are a clinician, researcher, or other expert, please fill out this form: tinyurl.com/3b7kdxb9

🐦🔗: twitter.com/fi_lowenstein/stat

#longcovid #covidlonghauler

Last updated 2 years ago

Coyote Jones · @coyote_jones
116 followers · 5 posts · Server mastodon.cc

Hello! Oddball Xennial here.
and in the U.S. Grateful companion to 2 feline friends and a stellar partner. My social interests include and I love Mexican food, used book stores, collecting art, and road-trips. 31 months into an unfortunate journey of being a

Other topics of interests:

#arthistory #cats #oddities #folkart #gardening #assemblage #painting #collage #covidlonghauler #xfiles #humanrights #publichealth #conservation #environmentalism #artist #mixedmedia #photographer #introduction

Last updated 2 years ago

Coyote Jones · @coyote_jones
112 followers · 1 posts · Server mastodon.cc

Hello! Oddball Xennial here.
and in the US. I am a companion to 3 feline friends and a stellar partner. My social interests include and I love Mexican food, used book stores, collecting art, and road-trips. 31 months into an unfortunate journey of being a

Other personal interests:

#arthistory #cats #oddities #folkart #gardening #assemblage #painting #collage #covidlonghauler #xfiles #humanrights #publichealth #conservation #environmentalism #artist #mixedmedia #photographer #introduction

Last updated 2 years ago