I've written seven posts that I've either taken down or not published for one reason or another. I feel like things are germinating in me but I'm not feeling very articulate. There is a lot going on internally as well as a lot going on in the ME/CFS world.
There is a documentary called "What About ME" due to come out in 2011. I watched the trailers and found them quite moving. At one point there is a woman talking about the people she knows that have committed suicide as a result of this illness. She said their bookshelves were lined with self-help books.
Here's a link: http://www.whataboutme.biz/
The suicide rate for people living with this is very high. The psychologizers would have people believe that we suffer from depression that will be fixed with some anti-depressants and cognitive behavioral therapy. They fail to see that 25% of us are so ill that we can not attend to basic activities of daily living, that we live our lives in isolation, and that we have a neurological disorder (in addition to immune system dysregulation) which produces all of the symptoms consistent with traumatic brain injury. We are fighting very hard for our lives.
This is a very different life from the one I imagined. I've gone from researching ideas for my dissertation to researching the best wheelchair to get. From going out for coffee with friends to living my life in isolation. I used to believe in the medical system for the most part. I now see how we don't have a medical system at all but an insurance system which is great when you are healthy...but horrible when you have a chronic illness.
I think what shocks me most is how easy it has been for people that I knew to discard me once I became so disabled by this. Trying to reconnect with old school friends has been eye opening. Things are fine until the question: "so what are you doing now?" I tell them and then never hear from them again. I once believed in the constitutional illusion that all people are created equal. They should have included a disclaimer "that all healthy people are created equal." Once you become disabled you realize there is a US version of the caste system with disabled people at the bottom. So I no longer answer the question "what am I doing now." In fact, I've stopped trying to reconnect with anyone.
One would think that after 3 years of being sick that I'd get used to it by now. With this illness 3 years is nothing. Three years is still within that window of shock and awe. It is still within the time frame of being hit with more losses as the few people who did try to maintain a relationship with me have also gone their way.
I'm still angry about it all. Maybe it will never go away. I do have moments of peace and joy. Most recently was last weekend when I was able to leave the house for a little while. We went to a high end stereo store so I could get some headphones. I treated myself to a pair of Grado 125i headphones which are ugly but sound heavenly. The whole experience at the store was wonderful. I got to sit in a comfy chair and listen to different headphones. I'm grateful I can still listen to music. It's the one thing this illness hasn't touched except for those rare days when my head hurts too much to listen to anything.
I guess I'm adjusting to the fact that I've tried so many treatments with nothing to show for it. Short of stem cells I don't know that anything will help.
So I will continue my search for a wheelchair/scooter, lick my wounds, and continue to try to grow spiritually.