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Hi I've just found you here, it's the most energetic ME forum I've found yet.
I went down with a virus over 3 yrs ago now, a post-viral 'train wreck' is how I think of it and so much of what you say resonates with my experience. I don't even know where the first 18 months went, I lived one day, hour, second.... thought at a time. I shelved, delayed and avoided; did anything to reduce the burden of life...you all know how it is, and now 3yrs on I am emerging from this miasma a different person; I used to quite like who I was, I'm not so sure about the new me.
Some one commented on the pain of not only being seriously ill but of not being believed and for me it has been this rejection by society that has left the deepest wounds. I seem to be speaking as if it is all over but it is not, everyday is a battle and I take very little for granted.
I still have my job, which I do less well than I did but better than I have been and by and large my colleagues have been sympathetic if not overly helpful. I find myself in a sort of limbo where I can think of doing some normal things again and am not completely defined by pain and fatigue but still can't do much. My cognitive abilities have returned sufficient for me to appreciate some of that which I had been oblivious to( one of the few kindnesses in this trying condition).
During an exercise at the ME clinic we were asked to draw a line to illustrate the progress of our health from before the onset of the illness to recovery. The line plummeted and slowly staggered upwards ending higher than it began; when queried I spoke of my belief that this illness could be transformational for it made one change and yes, grow into someone with more compassion and a deeper self-knowledge. This view didn't meet with unanamous aclaim! but I hold to it even more firmly now. I would in no way downplay the cruel and unusual suffering experienced by all those who pass this way, or justify it by future 'gain' but I am irrevocably changed; though at what cost?
How do I define myself?, as someone who has ME, will recover from it or will become asymtomatic and is ME the pain and well, you know, or is it the distance from those that can never understand; a gulf that may fade over time.
I practice craniosacral therapy and use the term Bodymind to refer to the interface of what we percieve as material and psychological.It is a concept I find useful as it allows for the manifestation of symptoms without the need to classify them. Richard Bentall in his book 'Madness explained' seeks to unravel the mess that mental Health classification has become and I think that his multifactorial approach offers a model for looking at the dysfunction of nervous and immune systems which lead to the multifarious symptoms of ME/CFS/FM/ MCS and on and on. Acronyms proliferate so fast, people are in danger of being swallowed up by them.
I seem to have gone off on one but hope that it resonates with someone and maybe their take on this can cast some light on this crazy alice in wonderland world I have fallen into.
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