Excellent find, muffin, thanks for posting. The direct link to that specific article is:
http://www.cfidsreport.com/News/10_What_Kind_Of_Freedom.html (or click
here). Feel free to cut & paste into your original message!
I had a period of several years of partial remission that I mistook for recovery (oops) in which I went gradually (over years) from being bedbound to being able to live independently and work full-time. When I was ill, I had imagined that life would be great when I was recovered and that I'd feel really happy. In fact, life was a real struggle - I was fifteen years behind in my career, which made me feel like a failure surrounded by people at my grade young enough (just about) to be my children; I had no partner and had re-emerged into life too late (for a woman, at least) to have much chance of finding one to my liking; everyone else had paired up and I felt a bit of a freak being single when everyone around me was in a couple. There was such a stigma to ME (in the UK) that I felt I had to be very careful about who I told about my history (I later found that someone at work had spread around the department the idea that I had been mentally ill despite having been sympathetic to my face). But by trying to keep my history secret for my own protection, I felt as though I was cutting people off and living a lie. Et cetera.
On the other hand, my old friends (with only one exception) had stayed true and in touch; my family had cared for me, supported and believed me; I made new, sound friends during the early stages of my independent living who knew all about my history and didn't care about it (except to be supportive); and many other good things happened.
I think that being housebound/bedbound bends one out of shape; in some ways for the good, in some ways causing damage. Getting better doesn't fix that damage automatically and presents new problems. This time round, I've realised that I have to do some work on myself if I'm going to be prepared for recovery in a way that allows me to get the most out of it.
One thing that interests me is meditation. I've been reading a lot about neuroplasticity (the ability of the brain, even the adult brain, to rewire itself due to certain kinds of training) and meditation - the science is now backing up claims that meditation (non-religious, anyone can do it including atheists) can help you to be happy and at peace with yourself, and well-disposed to others, even in the most difficult circumstances. I'm trying to find a structured course that I can do at home.
I've also been considering counselling (though I wouldn't seek this via the NHS for fear of it ending up on my medical records). I'm not sure about it, but I've been wondering if I maybe need some help to come to terms with the accumlated losses of over 20 years of illness. I don't want to get well and then still be dragging my illness around with me in my head.
I'm so sorry, Tom, that you are so angry, but I can completely understand why. I think one of my coping strategies when I was younger was to internally disparage the things I was missing out on to lessen the pain of losing out on them. However, when I came to "recover" I found that I wasn't able to enjoy good things as much as I had expected, perhaps because that strategy had blunted my capacity to value good things (not in a healthy "detachment" way but in a rather unhealthy "contempt" way).
Maybe now's a good time to review how we're coping mentally while we're still sick and review whether those really are good coping mechanisms. I know that some of mine aren't, and when I examine them, they seem to be ones thought up by the much younger self I was when I first got sick.
I'm not sure if I'm older and wiser or just older and weirder now but with at least some prospect of recovery with the XMRV work I'm starting to try to re-examine my assumptions about how I should deal with the world now, and what I want for the future.
Interesting times, as they say...
