I'm wondering about this. I notice quite a number of ME sufferers can apparently push their boundaries for a big event, then suffer payback and still return to their previous level of functioning.
This is not my experience. I find that if I push* at all even where payback is relatively mild, that I still progressively loose ground. I'm consequently cautious in what I do.
*(actually not even "push" but simply relax my brakes for a moment)
I'm only ill since sudden onset March 2012. I haven't worked since that date. I had some big losses over the first few months until I got good online advice. Then a few more lesser losses as I worked things out.
Finally I reached stability around Nov 2013, and kept at a level for about 8 months until a virus rocked my boat again in June this year, so I'm now struggling with how low my new level is. I'm heart rate monitoring and using a Fitbit, and coping mentally surprisingly well - no doubt down to excellent family support.
Yet, I wonder if there are a sub-set of us for whom this is illness is actually progressive?
Perhaps I'm not long enough ill to see a real trend in my state? I'm aware that an up-turn for me is still very possible - especially as I'm now doing everything I possibly can to help my condition.
However it seems as if every small mis-judgement I make is like a ratchet pulling my level ever lower and not releasing it afterwards.
Does anyone know are there figures on this?
I've created a poll here to get a feel for what others have experienced - although I'm aware that those who are on a recovery trajectory may not stay around on the forum, so their experience may be under represented in the answers.
Interested in others' views on this matter too.....
Edit to clarify the options:
I imagined people would be either on a general
and that within each of those they would either feel that the trajectory was either
I thought those whose path was erratic may not be certain of the direction, so used the word "unsure".
Hope that helps.
This is not my experience. I find that if I push* at all even where payback is relatively mild, that I still progressively loose ground. I'm consequently cautious in what I do.
*(actually not even "push" but simply relax my brakes for a moment)
I'm only ill since sudden onset March 2012. I haven't worked since that date. I had some big losses over the first few months until I got good online advice. Then a few more lesser losses as I worked things out.
Finally I reached stability around Nov 2013, and kept at a level for about 8 months until a virus rocked my boat again in June this year, so I'm now struggling with how low my new level is. I'm heart rate monitoring and using a Fitbit, and coping mentally surprisingly well - no doubt down to excellent family support.
Yet, I wonder if there are a sub-set of us for whom this is illness is actually progressive?
Perhaps I'm not long enough ill to see a real trend in my state? I'm aware that an up-turn for me is still very possible - especially as I'm now doing everything I possibly can to help my condition.
However it seems as if every small mis-judgement I make is like a ratchet pulling my level ever lower and not releasing it afterwards.
Does anyone know are there figures on this?
I've created a poll here to get a feel for what others have experienced - although I'm aware that those who are on a recovery trajectory may not stay around on the forum, so their experience may be under represented in the answers.
Interested in others' views on this matter too.....
Edit to clarify the options:
I imagined people would be either on a general
- up trend,
- down trend, or
- neither up or down...
and that within each of those they would either feel that the trajectory was either
- consistent or
- erratic.
I thought those whose path was erratic may not be certain of the direction, so used the word "unsure".
Hope that helps.
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