free at last
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something I have been thinking a lot about, when is recovery really recovery.
When my illness first started it was like hell on earth. Like some kind of viral attack immune dysfunction. sleep disturbance, allergy effect nightmare that went on for months at a time with barely days between relapses.
PEM is something I thought about because I read it made it worse, I tried to cut it down. But even doing nothing did not stop the relapses. As the years rolled by, and I got better. I still seemed to get symptoms if I exerted myself greatly. Though sometimes I would seem to get little reaction, and others a big one ?
went on like this for many years.
Now PEM doesn't appear to be a primary symptom. I can exert myself and not crash like I did for all those years. And when I think I am finally reaching a stage in my life where this illness is beaten. out of the blue. I will get a crash that lasts about 24 hours
I had one recently. All the usual, wondering if I have food poisoning, or if I have caught a virus, or flu.
That toxic poisoned feeling one gets when they are ill with a virus, or bacteria. But again it dawned on me after about 12 hours of symptoms, it was the old me, the old ME I should say. I actually was dreaming sitting on a couch, and vomiting. It woke me up and I felt sick. Yet after a while I realised there is no way this food poisoning.
Not sever enough to be uncontrollably vomiting. But feeling sick none the less. and that feeling in the brain
that the sickness is in the brain. slurred speech, staring in to blankness. I can always feel it in my brain ? Photo sensitive. like the brain is being poisoned by something ?
I keep having periods now where I sleep all the time, cant stay awake for very long, before I have to sleep again. sometimes it has gone on for days. as it has recently. then after the crash. I felt better much more awake for a few days at a time. I still get pains in my head, and in my eyes,, my eyes ach every morning I awake my eyes are hurting.
Every morning, I have one side of my nose completely blocked, like I have a cold. When I get up it clears. Next morning completely blocked again ? on and on.
I have to have my gall bladder out soon, as they say it has to come out. Last time I had a bad attack my liver swelled and I was jaundiced. But these conditions are likely not related. Though I have had gut problems all through this illness which first started twenty years ago.
Though lately its been a little better since I cut back on fats. And started on the high veg diets I did in the past, that helped me partly recover.
So I do consider myself mostly recovered, PEM is for the most part not a primary symptom anymore. Though even that is unpredictable. As I appear to Occasionly still get the toxic symptoms, even if I am doing little,, and even if I have been well for months.. This illness is nuts. am I recovered or not ?
when I think I am free of this illness,, I get twenty four hours were it says aha I am still here. hiding waiting ?
yes the crashes seem to happen less and less these days, sometimes for ages. And yes I only seem to feel terrible for about twelve to 18 hours. feeling a llot better by the next evening for example.
But considering the sleep problems still have, sleeping for ages yet still feeling tired. the head and eye pains
poor memory. photo sensitivity. And infrequent crashes, am I recovered. is this still ME SEID chronic fatique syndrome. or what. whats going on ? is all this echos of a past partly recovered illness.
I just don't understand. Am I a success story. I feel I am. Though I am traumatized by the past. And I am scared to go out in the winter as I cant handle the thought of catching flu. I am sick of being ill. And will avoid it in the winter time. Even by losing my freedom. I haven't gone in a supermarket for months my partner goes in for me ?
Anyway sorry for such a long post. Not sure I should bother others on here with the questions, as I know what some must be going through. But just thought those that can have the strength might understand all this more than I do ?
When my illness first started it was like hell on earth. Like some kind of viral attack immune dysfunction. sleep disturbance, allergy effect nightmare that went on for months at a time with barely days between relapses.
PEM is something I thought about because I read it made it worse, I tried to cut it down. But even doing nothing did not stop the relapses. As the years rolled by, and I got better. I still seemed to get symptoms if I exerted myself greatly. Though sometimes I would seem to get little reaction, and others a big one ?
went on like this for many years.
Now PEM doesn't appear to be a primary symptom. I can exert myself and not crash like I did for all those years. And when I think I am finally reaching a stage in my life where this illness is beaten. out of the blue. I will get a crash that lasts about 24 hours
I had one recently. All the usual, wondering if I have food poisoning, or if I have caught a virus, or flu.
That toxic poisoned feeling one gets when they are ill with a virus, or bacteria. But again it dawned on me after about 12 hours of symptoms, it was the old me, the old ME I should say. I actually was dreaming sitting on a couch, and vomiting. It woke me up and I felt sick. Yet after a while I realised there is no way this food poisoning.
Not sever enough to be uncontrollably vomiting. But feeling sick none the less. and that feeling in the brain
that the sickness is in the brain. slurred speech, staring in to blankness. I can always feel it in my brain ? Photo sensitive. like the brain is being poisoned by something ?
I keep having periods now where I sleep all the time, cant stay awake for very long, before I have to sleep again. sometimes it has gone on for days. as it has recently. then after the crash. I felt better much more awake for a few days at a time. I still get pains in my head, and in my eyes,, my eyes ach every morning I awake my eyes are hurting.
Every morning, I have one side of my nose completely blocked, like I have a cold. When I get up it clears. Next morning completely blocked again ? on and on.
I have to have my gall bladder out soon, as they say it has to come out. Last time I had a bad attack my liver swelled and I was jaundiced. But these conditions are likely not related. Though I have had gut problems all through this illness which first started twenty years ago.
Though lately its been a little better since I cut back on fats. And started on the high veg diets I did in the past, that helped me partly recover.
So I do consider myself mostly recovered, PEM is for the most part not a primary symptom anymore. Though even that is unpredictable. As I appear to Occasionly still get the toxic symptoms, even if I am doing little,, and even if I have been well for months.. This illness is nuts. am I recovered or not ?
when I think I am free of this illness,, I get twenty four hours were it says aha I am still here. hiding waiting ?
yes the crashes seem to happen less and less these days, sometimes for ages. And yes I only seem to feel terrible for about twelve to 18 hours. feeling a llot better by the next evening for example.
But considering the sleep problems still have, sleeping for ages yet still feeling tired. the head and eye pains
poor memory. photo sensitivity. And infrequent crashes, am I recovered. is this still ME SEID chronic fatique syndrome. or what. whats going on ? is all this echos of a past partly recovered illness.
I just don't understand. Am I a success story. I feel I am. Though I am traumatized by the past. And I am scared to go out in the winter as I cant handle the thought of catching flu. I am sick of being ill. And will avoid it in the winter time. Even by losing my freedom. I haven't gone in a supermarket for months my partner goes in for me ?
Anyway sorry for such a long post. Not sure I should bother others on here with the questions, as I know what some must be going through. But just thought those that can have the strength might understand all this more than I do ?
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