Thread by @Rikki_BK

I have #MyalgicEncephalomyelitis. It’s been 9 days since @MEActNet’s #StillSickStillFighting action + I wanted y’all to have a glimpse of what #PEM is. Post-exertional malaise is the hallmark symptom for #pwME #MECFS, which half of #pwLC #LongCovid have
#NEISvoid (1/18)

When we push ourselves beyond our energy envelope + don’t #StopRestPace, we end up with #PEM, where we “crash” and get much sicker. (I’m in the front here! We’re used to lying down, but getting up + down, lying on the hot pavement while chanting is really rough for us!) (2/18)

So for this action, we prepared. I got good rest Frid-Sun. I was good about using mobility devices + prioritizing comfort for transit + lodging. I took all my meds (even supplements!) when I was supposed to, put on sunscreen, drank water. Look how rested and ready! (3/18)

After the action on Monday, I had a chill rest of the day + went to bed early. I took Tuesday off so I could rest before traveling home. I knew I was still headed for a crash after 3 hours of protesting (4/18)

Tuesday, I woke up with a sore throat, congested, w swollen lymph nodes + GI issues. It took me a bit to get out of bed, and everything was too bright. I collapsed into the disabled section of the quiet car and slept through the train ride (5/18)

I woke up w my body incredibly sore + my head pounding and full—like I had the flu. With my walker, it took me 40 min to get from the train to the subway. It was hard to breathe + my legs felt like lead. It would have taken me at most 10 min before I was sick (6/18)

Rested + slept the rest of Tuesday. Wednesday, woke up feeling awful, but had to leave the house a bit for work since I was offline Sat-Tues. I used my cane, took my time, sat when I needed. It was low-cognitive work which helped (7/18)

I got home Wednesday afternoon and within the next few hours came down with a fever. I had work to do but it was too much of a cognitive load and everything was still too bright. To bed we went. Here’s where I am most of the time (but with the lights off). (8/18)

Wed night, I’m in bed but foolishly left the light on + Harris is out. I need the lights off but can’t get out of bed. My legs start to twitch from the fatigue. They keep spasming until Harris gets home two hours later, turns the light off, and I fall asleep. Here’s a clip (9/18)

Thursday I did a bit of cognitive work: made an agenda and a template document, sent an email. That took me the whole day. I lay in bed at one point but but couldn’t get sleep or rest (10/18)

Friday, I did some more work. I also didn’t realize until 6:30pm that I forgot to take my AM meds + hadn’t eaten anything. No wonder my body ached. #PEM is cognitive + physical (11/18)

Sat-Tues I got a lot of rest, but I’m still sicker than I was 10 days ago. I knew that recovering from the #StillSickStillFighting action would take me a bit. Everyone participating knew we would be so much sicker afterwards. But we had to take action (12/18)

My circulation is worse (my feet are freezing + #POTS makes it hard to stand for long w/o risking passing out), I can’t fall asleep until sometime btwn 2:30 + 5 am, my temp keeps spiking, + I wake up w body aches, a migraine, congested + sore throat every day (13/18)

It’s hard to explain to folks asking if I’ve “recovered yet” that this sicker me might just be my new baseline. It could take months (or longer) of me being very careful to get back to where I was 10 days ago (14/18)

#pwME knew that #LongCovid would be a 2nd pandemic, bc ME often occurs as a post-viral illness. Before covid 2.5 mill people in the US were “missing” w ME—#MillionsMissing from our families, our communities, our jobs, our lives. My sign: the pandemic is permanent for us (15/18)

Millions more are now missing with Long Covid, half have ME. We’re chronically ill—sick forever—and yet there’s barely any money put into #MECFS or #LongCovid. For decades, doctors, researchers, and the govt have been ignoring patients with illnesses like ours (16/18)

Biden’s claim the pandemic is over + the CDC getting rid of mask guidelines for healthcare providers will worsen the 2nd pandemic of chronic illness. After I got Covid, my ME got much worse

My sign tells Biden to “Declare an emergency for Long Covid + ME” #CovidIsNotOver (17/18)

In an overloaded healthcare system where very few providers take ME seriously, #pwME #pwLC put our health on the line bc this is an emergency. We’re #StillSickStillFighting bc we have to—#PandemicsAreChronic—but we can’t be out on the streets every day. We need your help. (18/18)

Here are some of the incredible orgs that led us last week. We’re resting now—no one has recovered—so follow, learn, DONATE, + protect yourself (+ us) by masking + testing @MEActNet @patientled @itsbodypolitic @MarkedByCovid + ofc @ACTUPPhilly @actupny

act.meaction.net/page/13161/don…