Tag: chronic illness

activism, body, disability, health, long covid

Chronic Illness Storytime: Unrest

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Movie poster for the film Unrest. It shows a woman lying on a white bed with brain monitor cords attached to her head. The poster has movie information at the top, including icons some of the awards that it won.

You have to be able to hold two things in your head. This illness destroyed my life. But what it showed me, I could never give that back.

Jennifer Brea, Unrest

Please watch this film. It’s the story you didn’t know you needed. If you want to understand what Long COVID is about, all the articles and essays in the world won’t get you as far as Unrest. No matter that it came out in 2017 before the pandemic. The chronic illnesses that can ravage a body (and a population) after an infection have been around as long as people have.

Continue reading “Chronic Illness Storytime: Unrest” →
body, Brain, disability, health, Learning, long covid

Enough Already: Notes on Sensory Overwhelm (part 2)

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Image source: The Inspiration Room

Why is it not enough to just be a gas station? Why does it also insist on being an entertainment platform, an advertising space, and a point of sale? All I’m asking from the Shell station is a fill-up on my little Prius. But as I stand there, pump in hand, the doors to the convenience store scream with images of Lottery jackpot numbers, cryptocurrency, Marlboros, and every flavor of beverage. Then, as soon as I’ve activated the pump, an upbeat voice starts speaking to me. About what now? The latest fashions on the red carpet? Yes, right at eye level, an entertainment “news”cast video selling more more more. More products, shows, celebrities, a car wash, and an upgrade to premium gas. 

Enough already!

Continue reading “Enough Already: Notes on Sensory Overwhelm (part 2)” →
Brain, health, long covid

Too Much: Notes on Sensory Overwhelm (part 1)

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Photo of a an exploding, flashing roman candle and the shower of sparks around it against a dark background
Photo by Jonas Allert on Unsplash

Last weekend, I attended afternoon tea. One of my girlfriends made a reservation at a fancy-pants tea shop in Old Town Alexandria for six of us a few months back. I was determined to go despite… well, everything. 

For two days leading up to this event, I rested as much as possible. I also cleared the schedule for two days after for recovery. It was going to be taxing but totally worth it. Right?

Continue reading “Too Much: Notes on Sensory Overwhelm (part 1)” →
body, Brain, Creativity, health, Letting Go, long covid

Smoke Signals: Notes on Phantosmia

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Photograph of a single orange flower with smoke coming from the blossom and smoke all around.
Photo by Matthew Henry from Burst

Outside, someone was smoking. The stink leaked in around the closed front windows. It stung my eyes as I sat in my partner’s living room in an easy chair, slogging through a work task. This has been my setup for the better part of the past year: balancing on the tightrope between productivity and rest. Pillows, lap trays, things to hold my feet up. Sunlight. Headphones. Pomodoros.

I tried to ignore the smell but it grew stronger. I glanced out but couldn’t see anyone outside. The place is nestled in a cohousing community with a small group of neighbors. Some may light up the occasional joint, but no cigarette smokers. 

So it must be someone delivering a package. Or working on a neighbor’s gutters.

The smell persisted. An hour? More? I kept working and the reek kept lingering. No voices, no sound of hammering. Just birds and crickets, and as far as I know, none of them have taken up smoking.

Continue reading “Smoke Signals: Notes on Phantosmia” →
body, disability, health, Learning, long covid

Maintenance Required: Notes on a Crash

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Photograph of an old rusted out car sitting on a dirt driveway near a fence and some run-down houses. A cactus is growing next to the car.
Photo by Angelique Downing from Burst

In a Disney princess bag behind the passenger seat lives the crash kit. Here is what you’ll find inside:

  • One basic medium pillow
  • One fuzzy neck pillow
  • One blackout eye mask
  • One pair of Loop earplugs
  • One packet of electrolyte powder
Continue reading “Maintenance Required: Notes on a Crash” →
body, disability, long covid

Slow and Steady: Notes on PEM

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Shannon standing on the lookout of a mountain with a view of the sky and coast of Kaua'i. She has a goofy smile and has her hands turned up
A thousand lives ago on Nounou Mountain Trail, or Sleeping Giant (Kaua’i, Hawai’i, 2022)

Going through photos of the last trip before my life changed, I see her. That me is there, radiating all the pain and exhilaration of the little mountain she climbed with her partner on their first day in Kaua’i. 

I love that girl. She was hurting bad from a bum hip that would get replaced in a year, but she powered through it, sun-happy and heart-strong.

She started vanishing just a few short months later, replaced by a body-snatching invasion of Long COVID symptoms. 

The worst of those symptoms? Post-Exertional Malaise. 

Continue reading “Slow and Steady: Notes on PEM” →
body, Brain, disability, long covid, Take Action

Calling for a Skycap: Notes on Fatigue

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Meme of a person smiling and reaching for a balloon that says "COVID is mild" just before the person is grabbed by a figure that says "Long COVID"

While we still have much to learn about long COVID, a growing body of research paints a worrisome picture, and more needs to be done to help understand, prevent and treat long COVID.

– Sens. Tim Kaine (D-VA), Todd Young (R-IN), and former Sen. Jim Inhofe (R-OK) in The Hill, 8/31/23

Imagine this.

You board that long haul flight woozy from too many hours of debauchery. Your center row seat wedges you between a fussy lap baby and a linebacker whose shoulders take up half your headrest. Plus there is the dude behind you who spends the whole flight playing a first-person shooter game balanced on the tray table at your back.

Continue reading “Calling for a Skycap: Notes on Fatigue” →
body, community, disability, long covid

See Here: Notes on Long COVID

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Smoke and hand obscure face inside black hoodie.

46,000 of us on a Reddit sub. 60,000 on a private Facebook group. Tens (or even hundreds) of thousands still on Twitter despite the fallout from the buyout. Discord groups. Regional discussion boards. And circles absorbing circles as sub-types make homes in community with those suffering from ME/CFS, MCAS, and other illnesses.

These are just the collected few. We are always dealing with small clusters. Only 10-ish percent who get the virus will end up with post-viral syndrome. A percentage of those show symptoms severe enough, or enduring enough, to register among a baffled medical establishment as more than anxiety, aging, or “all your tests are normal, try meditation and drinking more water.”

Continue reading “See Here: Notes on Long COVID” →