Whitney Dafoe

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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?

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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=...

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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

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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.  
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#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.
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I feel like my brain is dispersed in this 2 meter nebulous area outside my head and I can’t access any of my thoughts because they’re too far away.
#MECFS #LongCovid

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CHIPPING AWAY AT THE MYSTERIES OF #ME/CFS
Renowned geneticist has spent the past 12 years focused on the disease that has taken so much from his son

By Rachel Tompa
In @stanfordmedicine.bsky.social

@whitneydafoe.bsky.social
@janetdafoe.bsky.social

Everyday is a the beginning of a new dream in a way. We go to sleep dreaming of tomorrow and wake up and dare to dream. But when you have ME/CFS, so often day after day is a heartbreaking betrayal of those dreams by our bodies and minds and by the entire world around us. #MECFS #LongCovid

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…and then you check more stuff on your phone because you're so desparate for connection to the world (not equal to healthy people's phone additions), and then it's over, here come the chocolate cravings and the day has begun. But sometimes you have to pee! 😖

The famous Pee-Chocolate Cycle

The only way to sleep more in the morning is to go back to sleep before you feel the need to pee. Peeing makes you move enough to get hungry, then you eat something and you can't help but check your phone…

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#mecfs #chronicillness #pwME #LongCovid

I really try to express the reality of life with chronic illness in my photographs and writing. I think it's vitaly important. If you have a serious chroinic iillness, you certainly have felt like this. And you should know you are not alone. 💙 But also that there will be days of light again.

TODAY:  Everything is too much to bear.  Everything that is good is gone.  All that is left is keeping on. (which I will)

#mecfs #chronicillness #pwME #LongCovid

😭😭😭 I’m sorry 💙💙🙏

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