It’s been quite a while since I’ve posted. I’ve actually lacked the ability to post, and I’ve been lying in bed for quite a while. Years, in fact.
I realize that MECFS is TMS. In my own mind, this is beyond dispute. My primary problem is one of weakness. There are two theories on this, one is that the nervous system is making my body feel like it has no endurance or strength, when in fact it does. The other, is that the nervous system causes cellular dysfunction, which results in the weakness and lack of endurance. The latter theory is referred to the cell response theory.
I wonder if anyone here has any opinions, one way or the other as to which is most likely to be valid. I asked many people with MS who try to push through simply getting worse. Succeed, however. Those are absolutely certain of their success seem to succeed.
I am beyond weary of dealing with MCS. People speak of acceptance, but I can only maintain acceptance for so long. When I very slowly and steadily build strength and endurance over six months, living with extreme limitation, and then having a major setback, it’s a lot to bear. people have said that until I reach a point where I can bear my situation indefinitely, until after years, I’m able to resume some normalcy in my life, I won’t get better. Maintain a healing mindset for half a year is one thing, maintaining it year after year in spite of setback is another.
furthermore, a renowned TMS doctor, whom many of you have likely heard of, has said that I most certainly have enough endurance to sit down all day long. A period of six months, I had built myself up to being able to sit in a chair for most of the day, as opposed to lying in bed. I went through periods of stress, that resulted in feelings of neck, weakness, primarily. I did not know if the danger response theory, or the weakness of illusion theory, so to speak, was the correct one. Airing on the side of caution, I lay down for a while. I was still up for a couple hours here and there, but was lying down for a long period of time. So you know what I’m talking about, I’ll spell this out. I don’t mean to bore you, I just want to let you know where I’m coming from. I had gotten to the point where I was able to sit in a chair for 14 hours, and would stand every half hours so for a couple minutes to help my circulation. Had a crash that left me more or less bedridden for 10 days. Over two or three days I worked my way back to being out of bed for 13 hours, and sat for 13 hours for two or three days. at that point I had another crash, that sent me back to bed for another week and a half. I was then out of bed for longer periods of time, I don’t know how many hours per day, for a few weeks. I was getting out of bed with brakes. at one point I was up for 13 hours in one day. I’ve been crashed for the better part of a week. For one day, I was up for 13 hours, and then was lying in bed for another week. I was up for nine hours and one day, 10 hours yesterday, and here I am today having only been up for a few hours, and feeling profound weakness.
it seems to me, that after lying in bed for this long, I would certainly have some real weakness that would prevent me from setting up. What do you think?
my living situation is about to change dramatically. There are activities of daily living that I simply cannot perform. In spite of this, I’m thinking perhaps I need to force myself into a situation of greater independence. Perhaps I need to go to a health resort, or something similar. perhaps being in such a situation would force me to adapt. Perhaps the TNS doctors is right, and that I actually do have more endurance than I think I do. Let me know what you think, thanks
I realize that MECFS is TMS. In my own mind, this is beyond dispute. My primary problem is one of weakness. There are two theories on this, one is that the nervous system is making my body feel like it has no endurance or strength, when in fact it does. The other, is that the nervous system causes cellular dysfunction, which results in the weakness and lack of endurance. The latter theory is referred to the cell response theory.
I wonder if anyone here has any opinions, one way or the other as to which is most likely to be valid. I asked many people with MS who try to push through simply getting worse. Succeed, however. Those are absolutely certain of their success seem to succeed.
I am beyond weary of dealing with MCS. People speak of acceptance, but I can only maintain acceptance for so long. When I very slowly and steadily build strength and endurance over six months, living with extreme limitation, and then having a major setback, it’s a lot to bear. people have said that until I reach a point where I can bear my situation indefinitely, until after years, I’m able to resume some normalcy in my life, I won’t get better. Maintain a healing mindset for half a year is one thing, maintaining it year after year in spite of setback is another.
furthermore, a renowned TMS doctor, whom many of you have likely heard of, has said that I most certainly have enough endurance to sit down all day long. A period of six months, I had built myself up to being able to sit in a chair for most of the day, as opposed to lying in bed. I went through periods of stress, that resulted in feelings of neck, weakness, primarily. I did not know if the danger response theory, or the weakness of illusion theory, so to speak, was the correct one. Airing on the side of caution, I lay down for a while. I was still up for a couple hours here and there, but was lying down for a long period of time. So you know what I’m talking about, I’ll spell this out. I don’t mean to bore you, I just want to let you know where I’m coming from. I had gotten to the point where I was able to sit in a chair for 14 hours, and would stand every half hours so for a couple minutes to help my circulation. Had a crash that left me more or less bedridden for 10 days. Over two or three days I worked my way back to being out of bed for 13 hours, and sat for 13 hours for two or three days. at that point I had another crash, that sent me back to bed for another week and a half. I was then out of bed for longer periods of time, I don’t know how many hours per day, for a few weeks. I was getting out of bed with brakes. at one point I was up for 13 hours in one day. I’ve been crashed for the better part of a week. For one day, I was up for 13 hours, and then was lying in bed for another week. I was up for nine hours and one day, 10 hours yesterday, and here I am today having only been up for a few hours, and feeling profound weakness.
it seems to me, that after lying in bed for this long, I would certainly have some real weakness that would prevent me from setting up. What do you think?
my living situation is about to change dramatically. There are activities of daily living that I simply cannot perform. In spite of this, I’m thinking perhaps I need to force myself into a situation of greater independence. Perhaps I need to go to a health resort, or something similar. perhaps being in such a situation would force me to adapt. Perhaps the TNS doctors is right, and that I actually do have more endurance than I think I do. Let me know what you think, thanks
It was clear that she COULD do the things should felt she couldn't because when she stopped "thinking" about it, she could do them just fine. For example, if a chicken ran by and her subconscious instinct kicked in, she would run down those stairs like an Olympian where previously when she was thinking about it she just stared at them. Same with throwing a toy in the pool. If the toy was already in the pool and she wanted to get the toy, she would stand on the edge of the pool for an hour hoping the wind would bring her the toy. But if you threw the toy in while she was watching, she'd jump and fly through the air into the pool, grab it and swim out.
