About a year after the extreme virus that marks what I think of as the beginning of this illness I was labelled with CFS by a professor of Rheumatology at the Mineral hospital in Bath. It felt like second best as he really wanted to show FM, but I didn't hurt enough, then. I guess he was out of his comfort zone but he was OK if not really interested.
Six months later and I go on a course run by the ME clinic there. A shoestring operation, a psychologist, a couple of physio's and no budget.
Eighteen months in to this thing you have worked out a lot for yourself, I hadn't discovered PR at this point so it was intuitive coping; it worked. The first session had 13 people, by the third it had dropped to 3 and stayed there. I soldiered on because I was determined to get well....there is wisdom in crowds.
The information was mainstream Biopsychosocial but prior to the working out of GET so pretty woolly, It was a waste of time but it was my only contact with other people who knew what I was feeling. The irony was that the PT's delivering the material didn't have a clue. The stuff was deadly, the seats were hard, I left much worse than I arrived...I was still doing what I thought I should. Should, could , would and must were words I ditched and were mostly replaced by no.
In an early session they put a white board up and drew a short horizontal line about three quarters of the way up on the left side. One by one they got us up to draw the course we thought our illness would follow, a sort of saw tooth, a plunge followed by a recovery to a point below the start. Being naive and optimistic I continued my line to a point above the start point much to their consternation. "How can you expect that" they demanded, "because of all I will have learned" I relied. The pantomime horse stomped off.....( I thought of them as working together much as that theatrical Neddy, one the head, the other....)
The received message of the time was that 30% got worse, 30% stayed the same and 30% improved with presumably 10% fleeing this cuckoo's nest. I am older now and wiser but the message was of acceptance, to give up hope? I doubt I would have been strong enough to reject that so thoroughly now knowing what I do, but that was who I was and I am glad to have remembered that.
I remember a young woman in a wheel chair, so ill she seemed partially transparent, almost ethereal. Her partner lifted her effortlessly onto a chair. She didn't speak, she understood more of this than any of us; I think my performance made her smile...
Six months later and I go on a course run by the ME clinic there. A shoestring operation, a psychologist, a couple of physio's and no budget.
Eighteen months in to this thing you have worked out a lot for yourself, I hadn't discovered PR at this point so it was intuitive coping; it worked. The first session had 13 people, by the third it had dropped to 3 and stayed there. I soldiered on because I was determined to get well....there is wisdom in crowds.
The information was mainstream Biopsychosocial but prior to the working out of GET so pretty woolly, It was a waste of time but it was my only contact with other people who knew what I was feeling. The irony was that the PT's delivering the material didn't have a clue. The stuff was deadly, the seats were hard, I left much worse than I arrived...I was still doing what I thought I should. Should, could , would and must were words I ditched and were mostly replaced by no.
In an early session they put a white board up and drew a short horizontal line about three quarters of the way up on the left side. One by one they got us up to draw the course we thought our illness would follow, a sort of saw tooth, a plunge followed by a recovery to a point below the start. Being naive and optimistic I continued my line to a point above the start point much to their consternation. "How can you expect that" they demanded, "because of all I will have learned" I relied. The pantomime horse stomped off.....( I thought of them as working together much as that theatrical Neddy, one the head, the other....)
The received message of the time was that 30% got worse, 30% stayed the same and 30% improved with presumably 10% fleeing this cuckoo's nest. I am older now and wiser but the message was of acceptance, to give up hope? I doubt I would have been strong enough to reject that so thoroughly now knowing what I do, but that was who I was and I am glad to have remembered that.
I remember a young woman in a wheel chair, so ill she seemed partially transparent, almost ethereal. Her partner lifted her effortlessly onto a chair. She didn't speak, she understood more of this than any of us; I think my performance made her smile...
