Mecfs - Blog Posts

Sometimes it feels like i am already dead. Not part of anyones life anymore. Locked up in my flat. Just a liability for my parents who dont even like me. Like a ghost who is damned to haunt this room, but still has pain and wifi.

NPR

A discovery in the muscles of long COVID patients may explain exercise troubles

Long COVID patients can experience severe energy crashes after physical exertion. New research provides clear evidence that there's a biolog

Full Transcript at the link; 3-minute listen.

Quote:

By taking biopsies from long COVID patients before and after exercising, scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.

Among the most striking findings were clear signs that the cellular power plants, the mitochondria, are compromised and the tissue starved for energy.

"We saw this immediately and it's very profound," says Braeden Charlton, one of the study's authors at Vrije University in Amsterdam.

The tissue samples from long COVID patients also revealed severe muscle damage, a disturbed immune response, and a buildup of microclots.

"This is a very real disease," says Charlton. "We see this at basically every parameter that we measure."

I know I dropped off the face of Earth for a while but for anyone who is still following me:

Would there be any interest in headshot character art in exchange for donations to any ME/CFS foundations and research?

May is ME/CFS awareness month, and I want to do something to contribute.

I'll make another post tomorrow with art examples

🐦‍⬛On chronic illness and existential dread (not edited)🪺

I hope this year I will do more things. Choose to do more things I want to do instead of being afraid. This year I might have the privilege of spending the small amount of energy I have towards things I wish I would have already experienced. But this fears, oh, this fears.. their claws hold me tightly. They whisper „it’s not the right thing, you only have so little, don’t give it away for the perfect or the most important thing“… and I end up not using the small amount of energy. Like a fool. Like a naive, hopeless fool.

I wish I could save energy in a way, that I can stay curled up for days be then have a big eventful trip or just a day where I don’t need to „look at the watch“ (the energy-meter, if you will). But every time I go to sleep, I wake up with a feeling of regret. Every time I go to sleep, I am afraid of the next day. And I long for it, desperately, because maybe, just maybe, it will be the day when I finally move the claws away and am allowed to live?

Scared to disappoint myself, scared of what I have already lost, of the time that already passed. And longing for a fresh day, a fresh start, a fresh chance, just one more chance, I will not fuck it up! And then I do. But I am so tired of myself… it’s not a choice I keep telling myself, because 99% isn’t a choice, but this 1% is so painful. To see my Trauma and fears guide me instead of my knowledge and my hope. Good thing, that hope is patient. But am I? I have to be.

I shall walk when I can, cook when I can and laugh when I can. I shall experience what’s there to experience, no matter how small it seems to be in comparison to others, to those, who don’t live my life. To those, who, (for now?) are healthy. Or can afford the Great Denial. I shall write, I shall paint, I shall sing, as long as it’s possible. I shall get up early when I can and go to sleep early, because my body needs it. I shall be kind to my body, because it’s suffering from the same illness I do. Because it feels, like we aren’t the same, like there is me and there is my body. And there is the tiny child who wants to play, and the most scared adult, who is afraid to move at all, because what if violence will return?

But it will not. I deserve to live what’s there. And next time maybe I will have more.

I deserve to experience the beautiful simple things, because they are what makes life worth living.

Review: the WHY café

Read this today and uff, no, I wrote a book on similar topics and my book is simply better. Don’t wanna brag, but it’s true.

The idea, that once you have found your reason for existence, the thing that you want to do every waking minute of your life, that after that you will have enough money to survive, a job, and oportunities will come to you like it’s universe working for you… it’s fun untill you ask yourself “and what’s about the ill?”

Why does nobody ever thinks about the ill? The Disabled? Those, who don’t have the same room full of “you can do whatever you want”s to choose from?

Made me very angry. So, if I knew what makes me the most fulfilled and happy, and I was knocking at all doors and I was talking to all people about it, learning, creating, trying, working my ass off for this… but then got chronically ill and hat to reconsider everything and give up on bunch of dreams… that means I what, did not want it hard enough? If knowing what you are here for and working towards the fulfilment gets help for universe to make the road easier, does it mean I got punishment? What about people who are d*omg in wars and from diseases? The children even, literal children, why does it happen? Why do most passionate dancers loose legs and writers get brain injuries? I don’t believe in a Christian god who is “testing is”, nor I believe in punishment from “something bigger than we are”. I don’t think people deserved to get ME/CFS and become unable to get up, have a chat, read a book or even deal with smells/light/sounds. I don’t think I was ment to not being able to dance, jump and run, to not be able to wake up and feel rested (ever), to not be able to remember words or what I was doing just in this moment. It’s silly, I need to look for clues when I do things and then forget what I am doing. It’s silly untill it happens to you and you understand, any day your intellectual abilities can just leave you and there is nothing anyone can do.

This book is for health people who are in denial about the fact, that over 80% of Disabilities are not born with. And that at some point in a certain age we all become Disabled and need help and will have access needs. And everyone, especially since 2020, can get things like ME/CFS even if you were healthy before. And then no dream, no fulfilling idea, nothing will help and most certainly not the people around you who so desperately try to forget the existence of chronically ill and Disabled people and about them being just one accident or one unfortunate infection away from becoming one themselves.

Health people are just ✨different✨ in my opinion. If your main problem is not the ultra low amount of spoons, chronic pains, brain fog and not being able to do things most people don’t even think about while doing them.. yeah maybe you can gain smth from this book. But me, haha, I am like that, I just get angry and want to shake folx by their shoulders HONEY DENIAL IS A RIVER IN EGYPT!!

Anyways…

Just mailed my new Newsletter (vol.2 jippie! What a time to be alive!) This time talking about ME/CFS, #stillcoviding, solidarity and anger because of the lack of it. I wish I could host my own magazine type of situation.. Maybe one day with a special person. I love writing, people seem to like reading my things as well or at least most of them. The only way how I can become self-sufficient in a financial way would be by becoming a "full time" educator and writer. (I say "full time", because in my condition the only full tim eactivity I take part in is taking care of my basic needs. Still now always succeeding..)

Other topic: I have ordered some secondhand books and plan to write some book reviews on things i read recently and really liked. There are not many, but i have not written a book review in a very very long time.

I’m still tweaking it, but something the Visible app has hammered home these past few weeks is just how much energy my body expends existing.

Currently lying perfectly still and I’m in the ‘exertion zone’ because I’m in so much nerve pain it's making my heart rate elevate.

Being in pain is burning up my pace points. I’ve used two since I woke up this morning simply by being conscious.

Anyone who dismisses the effects of chronic pain on the body or tells you to exercise to push through it is formally invited to throw themselves into the sun.