You tell me, dear friend and ME sufferer, that you're worried, because I, instead of paying attention to my physical limits, go for a walk and that “Search far”, so, better fight / deal with psychological distress. It would be stupid, when I can only get out of bed, to go to the bathroom or not at all, just because I followed my instinct once too much.
I look back at mine 25 Years of myalgic encephalomyelitis, of which about 8 mild, I can say the following: you can do a physical 100 times, make emotional or mental border crossing (and with that I'm talking about more or less normal activities), but once out of 100 times this activity / experience results in irreversible damage. I know about myself, that I at least 4 experienced such irreversible damage, each time it was insane inner excitement for weeks, in which I have the strictest, disciplined, could no longer maintain an everyday life that was chronically separated from social experiences.
In these states, I had to leave my pensioner cloud room and submit myself to the psychiatric institution, where I went so excessively over the physically tolerable limit, that I then after weeks, back in my isolation, had an irreversible loss.
It was always these completely insane physical / psychological / mental states of excitement over weeks or months, that forced me, the routine and discipline of forced immobility and thus the stabilization of physical illness, to give up, that forced me, Break out!
You can't 20 Living on the brakes for years and more. A situation always-always comes up at some point, in which one has to destroy the prison walls of ME or they are destroyed from the outside: this could be constructive, it could be life, change, Departure, Be movement! It could be health!
But with myalgic encephalomyelitis this is only degeneration and permanent irreversible damage and bed rest or even: as you say: Care level.
I don't know, wie ich mich hätte schonen können, further encapsulate and protect inside!!! And i have to tell you: I do not see, how I could have so-called provisional and could have continued provisionally. I have been outwardly unlived as well as most years, I didn't let myself go with the world, out there, because i knew, with a high probability he would only give difficulties and thus a progressiveness of the complaints.
But I always went out, raus auf einen Spaziergang. Wenn du mir jetzt sagst, that this is dangerous, still to do in my condition and without a wheelchair, just, because in the moment it gives me the feeling of freedom; dann fühle ich diese verzweifelte Absorpiertheit, which often almost petrifies me:
Do you mean, I believe, that I can feel better, physically and the post-neuroimmune sickness shortens or weakens, when I run out of last things, that give me something like joy?
I wish so, it would be like that! But it is not like that! And as much as I believe in it, that body and soul are two different things, I think just as much, that from a certain level of psychological hopelessness there can be no more physical stabilization.
And, I would stop my walks, would get me meal service, a housekeeper, who cleans and washes for me, I would consistently lie in bed for a year 24 Hours, when I knew, that after this year there will be therapy, that heals me and frees me from illness! But there is no therapy in sight …. far and wide not …
I do not know, what the survival strategies of the others are, the more than 10 Years home-bound or more: They are confined to bed and therefore in need of care for years. What is your hope? You are not represented on the forums (understandably), they got lost, they must have imploded, their psyche must also have imploded, their personality must have dissolved ….
Then, love: have these muscle weaknesses and neuropathies etc.. improved once through consistent protection? No!
Who knows, love, what the mechanisms are, in my case, that I no longer have the ability to regenerate, after having been able to maintain a stable plateau for years, a time, in which I continuously howled my cap to my Platonic, how much falling in love with me, the intoxication, the confrontation, to be seen was missing!
I always believed in it, that the feeling of joy and pleasure is an antidote to physical ailments. What is my joy and my lust, when i die inside? Well, I said yes in my chapter of the novel, Curriculum Vituosus, you would have to put the protagonist into a coma for a while, perhaps it would stop the pathophysiological processes of ME ….
Edge of Ironie