ahmo
Senior Member
- Messages
- 4,805
- Location
- Northcoast NSW, Australia
I've only recently looked up from my 1.5 years participation on pr, from the Methylation and Detox forum to see what else is going on. I've spent a long time on this thread today and yesterday. I've also spent time on the thread, "What is the One thing about Suffering w/ Severe ME/CFS that the world Needs to Know?"
I thought I could comprehend the questions reasonably enough to answer the poll, which I did before reading much else. I'm posting now to revoke my YES vote for #2. I didn't like the APPEALS label so much as thought it expressed something about the fatigue. But not only my reading thru the thread, but my own experience today makes me wish to revoke my vote.
I've been rearranging my space over the last few days, pacing myself. Still, "Abnormal Prolonged Postexertional Exhaustion And Low Stamina" does not describe how I am today. It does not allude to how sensitive I am to light today, how I can hardly open my eyes, not due to sleepiness, but to some neurological discomfort. Nor to my slightly slurred speech. Even reading the many pages of this thread was more on the order of being in a trance, unable to mobilize myself to get up and go lie down.
In venturing out from pushing myself to understand and implement methylation protocols, into the wider world of pr, I've learned that some of the members whose names and avatars I recognize, are bed-bound or wheelchair bound. I am home-bound, having gotten off my bed a year ago. Weekly showering and a severely restricted diet make tending to my daily needs manageable.
Since I found my way out of a downward spiralling hellish existence 2.5 years ago, I have been on a path of healing. That healing has been of my CNS. I have slightly greater stamina than I did, so I'm less wiped out when I go out to Dr or shopping. I even managed to participate in a couple of family/friend visits of 2 hours in the past months, though I felt shattered afterwards. But it was the first time I could actually sit and participate in a conversation like this for more than a decade.
What am I trying to say? Please cancel my vote. But something else. For the entire time I've been disabled, I've felt like I'm justifying myself. To the world and to myself. Regardless of the dictionary meaning, I believe malaise would reinforce that. Even now, as soon as I start feeling the least bit better, my mind jumps to what I can do to start earning some money. As If!
I see that the viral infection I had 3.5 years before I collapsed was the onset. I even came to call myself 'chronically fatigued' at the time, started looking for info re CFS. I see that I'm so much better off than so many. And I recognize that the only reason I'm better now is because I'm micro-managing my biochemistry.
Maybe I should have posted this on the "What is the One Thing About Suffering..." thread. I think I'm just coming to grips with the liklihood that as much better as I feel, this is likely as good as it gets. For that I'm very grateful, life before was unbearable. But I'd far rather ME, even w/ the CFS attached to it, than "Abnormal Prolonged Postexertional Exhaustion And Low Stamina". thanks, ahmo
I thought I could comprehend the questions reasonably enough to answer the poll, which I did before reading much else. I'm posting now to revoke my YES vote for #2. I didn't like the APPEALS label so much as thought it expressed something about the fatigue. But not only my reading thru the thread, but my own experience today makes me wish to revoke my vote.
I've been rearranging my space over the last few days, pacing myself. Still, "Abnormal Prolonged Postexertional Exhaustion And Low Stamina" does not describe how I am today. It does not allude to how sensitive I am to light today, how I can hardly open my eyes, not due to sleepiness, but to some neurological discomfort. Nor to my slightly slurred speech. Even reading the many pages of this thread was more on the order of being in a trance, unable to mobilize myself to get up and go lie down.
In venturing out from pushing myself to understand and implement methylation protocols, into the wider world of pr, I've learned that some of the members whose names and avatars I recognize, are bed-bound or wheelchair bound. I am home-bound, having gotten off my bed a year ago. Weekly showering and a severely restricted diet make tending to my daily needs manageable.
Since I found my way out of a downward spiralling hellish existence 2.5 years ago, I have been on a path of healing. That healing has been of my CNS. I have slightly greater stamina than I did, so I'm less wiped out when I go out to Dr or shopping. I even managed to participate in a couple of family/friend visits of 2 hours in the past months, though I felt shattered afterwards. But it was the first time I could actually sit and participate in a conversation like this for more than a decade.
What am I trying to say? Please cancel my vote. But something else. For the entire time I've been disabled, I've felt like I'm justifying myself. To the world and to myself. Regardless of the dictionary meaning, I believe malaise would reinforce that. Even now, as soon as I start feeling the least bit better, my mind jumps to what I can do to start earning some money. As If!
I see that the viral infection I had 3.5 years before I collapsed was the onset. I even came to call myself 'chronically fatigued' at the time, started looking for info re CFS. I see that I'm so much better off than so many. And I recognize that the only reason I'm better now is because I'm micro-managing my biochemistry.
Maybe I should have posted this on the "What is the One Thing About Suffering..." thread. I think I'm just coming to grips with the liklihood that as much better as I feel, this is likely as good as it gets. For that I'm very grateful, life before was unbearable. But I'd far rather ME, even w/ the CFS attached to it, than "Abnormal Prolonged Postexertional Exhaustion And Low Stamina". thanks, ahmo
