This is ME/CFS. Unrelenting. Unforgiving. Never ending. You fight and fight for crumbs of life that most muggles throw away. Crumbs that are not even good enough for the dogs. And then ME/CFS launches a new assault and you are back in the trench you were in years ago. No mercy. No solace. A forever war that keeps taking and taking and taking…
Oh Whitney, what a nightmare! My heart goes out to you💙 🤞 it's just a blip and you get back to the magnificent progress you were at before, knowing that your efforts will be seen in '27 and 🤞you may even be upright for the first viewing!! 🤞🤞🤞🤞💙🤞💙🤞💙🤞
Whitney, this is so heartbreaking. I know that horrific vulnerability you talk about. And I know what it’s like to have a stress response that’s on fire all the time - the extreme sensitivity to basically everything is one of the most hellish things for me. All I can say is I’m with you and thank you so very much for putting yourself through this for all of us ♡
I understand this so much... This is pretty much almost exactly what I go through & endure. These words you write could have come out of my own mind - Even though I don't have ME/CFS. Instead, I have FND & Fibromyalgia, and these words describe almost exacrly what I've been living these past few years, in a HELLISH 12 year (& counting) journey I've been on. I've been rendered bedbound or, at least, room-bound, struggling to get out of a bed that's 6 inches off the floor (it's a floor bed). Functional Neurological Disorder was something I only recently discovered even existed, and found out it was THAT which led me to my worst symptoms (that wasn't the blinding agony of severe fibro), including Quadraplegic Paralysis and Extreme & wide-ranging Paresthesia. The worst part, though, is the Functional Seizures BlackOuts and the Extensive, overwhelming Fatigue that barely allows me to do anything. I don't have "Spoons" I have one really rusty tiny egg-spoon that most of the handle's fallen off from, at best.
The words that your condition, "launches a new assault and you are back in the trench you were in years ago. No mercy. No solace. A forever war that keeps taking and taking and taking" resounded so much with me.
The "Stress Response" thing being described in such a way that is understandindable, are words I have never been able to voice or explain; barely even understood by even myself. I'm trying to climb out of it right now, but I've gone backwards a bit and my phone has remained off for maybe 5 days now. I dare not turn it on yet. I'm So Petrified of the post, that someone else looks after it and has to help me every now and again face it, with me shaking in terror inside. As an Autistic Person with Alexithymia, it is always a constant struggle to understand emotion (good or bad) or what's going on with your head. Your descriptions and context about this phenomena has been eyeopening and insightful.
Thank you for taking the effort and energy to write this post
You were amazingly brave to spend two whole days speaking and interacting with this film crew, especially since you'll be kept waiting 2 years for the results. I can't even spend that much time on consecutive days with my own family!
Oh Whitney, what a nightmare! My heart goes out to you💙 🤞 it's just a blip and you get back to the magnificent progress you were at before, knowing that your efforts will be seen in '27 and 🤞you may even be upright for the first viewing!! 🤞🤞🤞🤞💙🤞💙🤞💙🤞
Whitney, this is so heartbreaking. I know that horrific vulnerability you talk about. And I know what it’s like to have a stress response that’s on fire all the time - the extreme sensitivity to basically everything is one of the most hellish things for me. All I can say is I’m with you and thank you so very much for putting yourself through this for all of us ♡
I understand this so much... This is pretty much almost exactly what I go through & endure. These words you write could have come out of my own mind - Even though I don't have ME/CFS. Instead, I have FND & Fibromyalgia, and these words describe almost exacrly what I've been living these past few years, in a HELLISH 12 year (& counting) journey I've been on. I've been rendered bedbound or, at least, room-bound, struggling to get out of a bed that's 6 inches off the floor (it's a floor bed). Functional Neurological Disorder was something I only recently discovered even existed, and found out it was THAT which led me to my worst symptoms (that wasn't the blinding agony of severe fibro), including Quadraplegic Paralysis and Extreme & wide-ranging Paresthesia. The worst part, though, is the Functional Seizures BlackOuts and the Extensive, overwhelming Fatigue that barely allows me to do anything. I don't have "Spoons" I have one really rusty tiny egg-spoon that most of the handle's fallen off from, at best.
The words that your condition, "launches a new assault and you are back in the trench you were in years ago. No mercy. No solace. A forever war that keeps taking and taking and taking" resounded so much with me.
The "Stress Response" thing being described in such a way that is understandindable, are words I have never been able to voice or explain; barely even understood by even myself. I'm trying to climb out of it right now, but I've gone backwards a bit and my phone has remained off for maybe 5 days now. I dare not turn it on yet. I'm So Petrified of the post, that someone else looks after it and has to help me every now and again face it, with me shaking in terror inside. As an Autistic Person with Alexithymia, it is always a constant struggle to understand emotion (good or bad) or what's going on with your head. Your descriptions and context about this phenomena has been eyeopening and insightful.
Thank you for taking the effort and energy to write this post
You were amazingly brave to spend two whole days speaking and interacting with this film crew, especially since you'll be kept waiting 2 years for the results. I can't even spend that much time on consecutive days with my own family!