Read on Twitter
Today is Day 149 since my first covid symptoms and still down and out with a serious chronic illness. Here with an update as the pandemic and its breakdowns continue. 1// https://link.medium.com/Bfb3iZtU18
I went public with my personal health in June. My hope is by knowing someone with covid, you can help change society’s behavior & attitudes. Grassroots networks are self-advocating for research & amplifying our stories; we need awareness and change. 2// https://www.technologyreview.com/2020/08/12/1006602/covid-19-long-haulers-are-organizing-online-to-study-themselves/?truid=69658840d8e359ff4641358ff60a1aab&utm_source=the_download&utm_medium=email&utm_campaign=the_download.unpaid.engagement&utm_term=non-subs&utm_content=08-12-2020
No one knows the lasting effects of SARS-CoV-2. Not length of illness or the laundry list of permanent damage. 1 in 5 aged 18-34 (w/no chronic medical conditions) has experienced long-term symptoms after testing positive 2-3 weeks prior, per CDC. 3// https://www.cdc.gov/mmwr/volumes/69/wr/mm6930e1.htm?s_cid=mm6930e1_w
Some of my doctors hesitantly call it a variation on ‘presumed post covid post viral issues’. “Hesitantly” bc no one knows what this is nor what to do. “Presumed” bc I’ve had no positive covid or antibody tests. Still ruling out The Other Things. 4// https://www.bmj.com/content/370/bmj.m3026
It took 145 days for a doctor to feel confident enough to name a diagnosis. A neurologist who specializes in headaches thinks it’s post-viral NDPH, new onset daily persistent headaches. Starting another new treatment plan now. 5//
Doctor after doctor comes back with negative/normal tests. A few more specialists to see, otherwise waiting for research to catch up. The best care is under academically-oriented physicians who are hungry to solve the new plague & publish papers. 6// https://www.nature.com/articles/d41586-020-02335-z
Highlights: Overall there’s relative improvement with time. Working assumption is that rest will bring full recovery. Relocated to my parent’s house in Chicago early August from NYC. On a leave of absence from work. Leaning on a community of peers also dealing w/ post covid. 7//
Search “covid long haulers” and all our stories read variations on the same. Days 1-11 were flu-like 10x. Days 12-67 were mainly ‘mild’ pulmonary problems except when breathing got more severe. After a steroid burst, these have been my main symptoms: 8//
http://www.wsj.com/amp/articles/three-months-in-these-patients-are-still-ravaged-by-covids-fallout-11593612004
http://www.wsj.com/amp/articles/three-months-in-these-patients-are-still-ravaged-by-covids-fallout-11593612004
NEUROCOGNITIVE FUNCTIONING. My brain doesn’t work as before. I can’t process complex issues beyond a few minutes. I can’t read or write beyond snippets. Forget words and spelling. Clumsy. My short-term memory isn’t great. 9//
HEADACHES. Nonstop headaches. Physical and mental exertion relapse symptoms, making them 5x worse. The crash recovery time is getting shorter (except when longer) as I learn to manage this. Dehydration (< 3-4 liters/day) makes it worse, too. 10//
FEVERS. Consistent low fevers that sometimes spike. Currently fever-free since Day 139 — longest stretch since I got sick.
FATIGUE. Tired all the time with restless exhaustion. No naps. Insomnia. Working on incremental increases in how I use my physical & mental energy. 11//
FATIGUE. Tired all the time with restless exhaustion. No naps. Insomnia. Working on incremental increases in how I use my physical & mental energy. 11//
NEUROPATHY. My feet are tingly and sore to touch let alone walk. I lay down a lot.
HAIR LOSS. My hair significantly thinned — the body’s common response to trauma. 12//
HAIR LOSS. My hair significantly thinned — the body’s common response to trauma. 12//
OTHERS. Those are my main symptoms except when they’re not. Ringing in ears. Blurry vision. GI upsets. Muscle aches and weakness. Joint pains. 13//
My case is dubbed mild. Not counted on official lists. No hospital visits. CDC found 1/3 of covid patients not sick enough to be admitted to the hospital don’t fully recover. We don’t have data on these people. 14// https://www.washingtonpost.com/opinions/dont-just-look-at-covid-19-fatality-rates-look-at-people-who-survive--but-dont-entirely-recover/2020/08/14/3b3de170-de6a-11ea-8051-d5f887d73381_story.html
I’m in good spirits. I’ll probably get better. People can get better after post-viral syndromes. Maybe not. Either way I got lucky in health & support nets. Grateful for privileges: good health insurance, good healthcare access ( @MountSinaiNYC), a supportive employer & money. 15/
State & federal policies can’t contain this until we see new federal leadership. Maybe it’s my NYer-during-March/April trauma or it’s just good pandemic protocol, but follow the damn guidelines as best as scientists understand them today, & best as your situation allows. 16/
I hope you & your loved ones get lucky, too. Many more won’t. You have neighbors & friends & family & networks of low-wage workers that serve your comforts. I don’t know how to explain that you should care about those other people. 17// https://www.cidrap.umn.edu/news-perspective/2020/07/studies-people-color-bear-larger-share-covid-19-burden
Also avoid getting covid so you don’t have to negotiate the nightmare of contracting a nine-month-old disease while navigating our broken civic and medical infrastructures. Fight for the greater injustices. @EdYong209 of @TheAtlantic reports it best 18// https://www.theatlantic.com/magazine/archive/2020/09/coronavirus-american-failure/614191/
I don’t know what else to say other than to scare you with one of the infinite stories of a previously healthy thirty-something facing potentially permanent chronic illness. 19//
