It's a subject I have largely avoided discussing with anyone other than my closest friends lately because I felt a sting of embarrassment at my own initial enthusiasm and subsequent silence. I am a perfectionist by nature and don't cope well with failure.
However, I am presently engaged with some pretty heavy work surrounding my own existence. This has led me to a more peaceful place, a place where I can more readily embrace the uncertainties of life and the uncertainties of M.E. It has led to some 'brave' but scary discussions. Some with others, such as officially ending a 7 year relationship, and some with myself about how I cope (or don't) with being unable to always control and fix everything.
So, I think it's healthy I share my response to that forum post here. My embarrassment and guilt about not being able to follow through on my initial plans are now more tempered by realism and a focus upon getting myself in a good place spiritually before I try to work out how best I can be of service to others.
Hindsight is wonderful, as we all know. More importantly, experience is valuable if we keep learning from it.
I think I was the epitome of a relatively newly-diagnosed person who had never really encountered a situation as unexplained as M.E. before. I, rather naively, felt that there must be a way to beat this through brainpower, research and determination. Being skilled at running before I learn to walk, lol, I also decided I must do something for the greater good. I must channel what energy I had into helping others.
Looking back, this was misguided, although well-intentioned. Greater minds than mine have been wrestling with the puzzle of M.E. for many years and it now seems a little foolish to consider I was going to avoid being a statistic and get well again through my own abilities. A very wise friend of mine said to me recently that I would benefit from "stopping being a knower and becoming a learner" - this is sage counsel indeed.
I still have an ambition to do something of real value for others. I just have to be more realistic about how I can best utilize what skills and energies I possess. But yes, my focus has had to shift a little from the community to myself. Not because I have become more ill or because I have become more selfish but because I now realise that I was avoiding dealing with my own lack of control over this illness. Coming to terms with the fact I cannot cure myself and there is no missing formula that everyone else has missed all these years is difficult psychologically.
The past year has been a rollercoaster of emotions for me. I have sulked, I have mourned, I have raged, I have argued, I have spoken my mind when my thoughts still weren't clear and I have argued with and upset people I care about. So much of this seems tied to my own need to accept 'what is' without giving up hope for the future. I am therefore working a lot more on my spirit and considering the more philosophical approaches to dealing with illness.