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

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In January this year I spent 3 weeks in the hosptial for a pretty serious infection and related conditions. My experience there was at once a surprise and a discouraging setback that added to my symptom burden. In this post I relate my experience and thoughts on what it means for all of us.

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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 and my body is going through "growing pains" or maybe more accurately "healing pains" adjusting to new meds and a possibly long healing process…

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I started eating again in 2024. After 11 years not eating a crumb of food or even drinking a drop of water. I got all fluids and nutrition from tubes inserted into my body. For 11 years.

In 2025 I have another big improvement to announce.

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

What will 2026 bring❓

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…every single researcher at Ron’s recent Working Group Meeting - every researcher there said they don’t care if they are the ones to discover the cure for ME/CFS, they just want a cure to be found to end our suffering. That is unheard of in scientific research or in any field of study - even in the arts…one thing to be grateful for today…

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My Jtube broke finally and I have to go to the hospital tomorrow and I’m feeling stressed...It is so hard seeing the real world and really feeling it and then coming back to my room and closing all the doors…The spontaneity that healthy people show so clearly is at once a refreshing reminder of what life is supposed to be like, but also a shocking and profoundly sad reminder of what my life is like…

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To all those living in silence and darkness. Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffering, agony and loss…

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That is ME/CFS. We live with world champion symptoms with no idea what is causing them or what will happen with those symptoms or what our future holds. We hold onto hope but are often crushed by this harsh, unrelenting illness…

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