Feeling The Medical System Work Before leaving the hospital I had some conflicting emotions about going home versus staying there. There’s something deeply cathartic about having a medical issue that’s known. You go to the hospital ...

Read or listen to the whole post on my blog:
www.whitneydafoe.com/mecfs/?post=...

Before leaving the hospital I had some conflicting emotions about going home versus staying there. There’s something deeply cathartic about having a medical issue that’s known. You go to the hospital and they diagnose you and they have a treatment plan and follow that plan…
#mecfs #LongCovid

I'm tired of my computer. I want to go outside and play in the dirt. Make something stupid. Show no one. Take it no where. And destroy it afterwards. And then rub the dirt in my face and run around like a madman. #MECFS
2/2

When you have #severeMECFS, you can't be very active at all, so if you're lucky and can tolerate a screen (and many or most can't), about the only thing you can work on involves your computer. 1/2

In The Hospital

In January this year I spent 3 weeks in the hospital for a serious infection and related conditions. My experience there was at once a surprise and a discouraging setback.

Read the whole piece and watch the video on my blog 💙
www.whitneydafoe.com/mecfs/?post=...

#mecfs #LongCovid

I want to venture out into the garden today on Easter, find an egg, open it up, and find my life waiting for me in there.  On pause.  Swallow it whole and then do anything I want.  Anything.  I just want to picture it and go, my body firing into action.  Follow the white rabbit!

#mecfs #pwME

…crying, cursing, righteous anger, pulling out what’s left of my hair, whatever it takes to get through one more day and closer to that day when we get real treatments and a cure. It breaks my heart every single day, but I can live with a broken heart. I need to feel freedom again.

Living just one more day with #MECFS is the saddest, most horrifying thing I could imagine. But I’m going to do it. I’m going to wake up tomorrow and let another day slide past me without living it. And I’m going to get up the next day and do it again. Acceptance, letting go, courage…

A quote from 2024, but sadly still urgently relevant today:

"Care for ME needs a complete overhaul worldwide if we are to care for ME patients the way we care for patients with any other health condition." — Whitney Dafoe @whitneydafoe.bsky.social

#MyalgicEncephalomyelitis #pwME #MECFS

I can’t act.  I can think of worlds from simple to profound.  But I can’t act on making any of it.  So I sit and watch it.  And I watch the world pass by without it.  And without me.  This is the torture of #MECFS.  We are HERE and we are ALIVE but we cannot act on LIFE to LIVE.

Drinking coffee to try to get my mind to work feels like pushing on a cow's butt to try to get it to walk. #MECFS #LongCovid

💙💙💙

💙💙💙

💙💙💙

👏💙💙💙

👏💙💙💙

I feel like a war torn soldier, at war with the whole world for the most basic human rights.  But I'm a devastatingly fragile, severely chronically sick person.  Why don’t I feel like I’m being taken care of by a kind and loving society that wants me to thrive again?

#mecfs #LongCovid

This waiting game,
Waiting for a ride,
To that golden land where,
Life happens.
How long must we wait,
We millions?

🙏💙💙💙

I had a very serious medical incident happen right after posting my last video about talking again and have been through a lot…I'm ok now, I’m recovering…

Read or listen to the whole piece on my blog👇
www.whitneydafoe.com/mecfs/?post=...

#mecfs #chronicillness #pwME #LongCovid #resiliance

I started eating again in 2024. After 11 years not eating a crumb of food or a drop of water.

In 2025 I have started ‼️ TALKING ‼️ again after 12 years of not saying a word to anyone!

What will 2026 bring❓

👀 Watch, Listen and Read the whole post in my blog:
www.whitneydafoe.com/mecfs/?post=...

😊💙💙💙

I'm healthy because I’m a good person and I pray and I deserve it. Oh wait, I’m not healthy. Fuck me.

#mecfs #LongCovid #chronicillness #Disability

When you have a better day, and you're scared to do anything with the energy/clarity because you know how fast you can lose it and it just feels so good to *feel* more alive, you're happy just thinking and feeling. You truly know how sacred life is, and how relentless ME/CFS is.
#MECFS

🤣

I'm thinking some of the things that water doesn't extract help with blood flow to the brain. 🧠🤷

Chocolate Covered Espresso Beans 😍 
My new weapon against the dark lord.  For some reason these little buggers help a lot with brain function (but with limits, they don't cure bad days). No chest rush or jitters like coffee, just a brain boost. Somebody stop me! 😊

#mecfs #pwME #selfportrait

I can hear Whitney whispering, but I can't make out the words well enough to decipher their meaning or their purpose. I know I am still alive, still yearning, still clawing for life, but all of the things I used to know are hushed, dulled, numbed.
#MECFS #LongCovid #pwme

Many of us ME/CFS patients only see the world through bars.  Even if they are not seen, they are there; Bars of pacing, restraint, radical rest, isolation, or phyical constructs like my window, sheltering us from the world of buzzing, energy guzzling muggles outside.  
2/2

#mecfs #pwME #LongCovid

The moon outside my window.  During certain times of the year it moves down through the trees and I can see it for a fleeting moment between branches before it disappears down over the bushes.  It’s the only time I’ve seen the moon since 2013;  Through the bars of my window.
1/2