Tag: me/cfs

body, Brain, Letting Go, long covid, Mindfulness

Immune Response

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Color photograph of a plant seedling in dark soil, beginning to open a three green leaves from red stems.
Photo by Daniel Hajdacki on Unsplash

Thank you for protecting us. You were so brave. You did exactly what you needed to do to keep that mess from doing its worst. Considering all of the ways we could have been done in, all of the dangers at the door, it’s really a marvel that you knew just what to do. Your arsenal was stocked and you, skilled at using everything in there. You kept us safe. You have our deepest gratitude.

Now that we’re sitting down here together, we have something else to tell you. It’s important. We need you to hear this. Are you ready?

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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.

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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!

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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?

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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. 

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