Sick Of This BS I’m tired of all of it. I’m tired of being tired and I’m tired of having to use the word tired to describe something so much more profound. Watch for more 🔥🔥🔥💙 I’m never giving up though, I will have freedom!!! 😤💙 ——————————————— #mecfs #LongCovid #ChronicIllness #pwME #spoonie

People from the "wellness" dimension judging people with an illness they have not even bothered to google. What the bloody hell. You can’t call that "wellness" anymore it’s so misinformed and uneducated, it’s just "nice sounding nonsense”. Or in many cases, "harmful nonsense”.

Where does it go when you lose it? When you feel as if you’re in a dream watching your life unfold somewhere else? Where is that place? When you can sense yourself but you feel that it is not truly in you? Where has it gone? Where do we go when we are lost to the fog? #MECFS

I just woke up and had an idea for a project I desperately want to work on. And I felt this rush of excitement, not even working on it but just being able to be mentally engaged with it for a moment. It’s absurd how excited we are to simply live our lives and yet branded "malingerers" 😡 #MECFS

Whitney describes the calculus of everyday life when living with #ME-CFS. Able-bodied people probably can't imagine having to make decisions like this to get through an average day. www.whitneydafoe.com/mecfs/?post=... #disability #chronicillness #PwME

Whitney Dafoe@whitneydafoe.bsky.social · 2mo ago

A video exploration of the impossible decisions ME/CFS patients have to make, constantly having to decide between two options that will both make our health worse… ♿️ Watch, Listen or Read on my blog 👇 www.whitneydafoe.com/mecfs/?post=...

Share a story by @swastrosarah.bsky.social in memory of Maeve Boothby O’Neill: www.smileforme.org.uk/shareastorymaeve 🩵

Share a story – Maeve Boothby O’Neill

In memory of Maeve Boothby O’Neill b.1994   ME. 2008   d. 2021 Maeve died too young.  ME did not kill her.  Medical neglect did.  She was born a scholar and, by t…

smileforme.org.uk

A video exploration of the impossible decisions ME/CFS patients have to make, constantly having to decide between two options that will both make our health worse… ♿️ Watch, Listen or Read on my blog 👇 www.whitneydafoe.com/mecfs/?post=...

Impossible Decisions

A video exploration of the impossible decisions ME/CFS patients have to make, constantly having to decide between two options that will both make our health worse. And how much more difficult these d...

whitneydafoe.com

#pwME, never forget, you are always more than the illness. Even if it kills you, you are much more than it. Your are more than all the medical ignorance and social stigma you endure.

Smile For ME@smileformeuk.bsky.social · 2mo ago

Share a story by @swastrosarah.bsky.social in memory of Maeve Boothby O’Neill: www.smileforme.org.uk/shareastorymaeve 🩵

Imagine watching everything you care about in a house that starts to catch fire.  And there’s a firehose one meter from you, but you're tied to a chair and can’t move.  So you have to sit there and watch it all burn.  That is everyday, over and over again, living with #MECFS 💙

Imagining but never doing Dreaming but never experiencing Longing but never feeling Seeing but never touching Believing but never receiving Envisioning but never achieving Driven but never accomplishing ⠀⠀⠀⠀Loving but always being alone. The experience of living with ME/CFS. —————— 💙 Whitney

I am really sick today…It’s so important to remember that the way you feel in this moment is fleeting. It’s like a ball that keeps rolling, and you just have no idea where it’s going to wind up or where it’s going to land…

A clarification of my previous video about how cathartic it feels to be treated by the medical system for a condition *other* than #MECFS - a known condition that the medical system knows how to treat, with decades of research and studies and drug trials and very well predictable outcomes.

Whitney Dafoe@whitneydafoe.bsky.social · 4mo ago

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

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

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

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

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

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

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