My M.E. wax and wane. It changes from very severe to a stage where I can go outside and life is easier.
But the sever state is difficult. You lie there in your bed and your humanity is slowly sliced away bit by bit until all that you are is a being. You are being, but you dont really care anymore if you are dying or being. Sometimes you look at the clock and are happy that yet another hour have past and that you soon can go to sleep again. Theres no dream and no hope anymore, because I am using all my energy to just survive.
I live alone and the last time anyone touched me was in January when my doctor shook my hand. The last time someone kissed me, the last time I had sex, years and years ago.
When I am better I take part in the fight for treatment, for research. And as an XMRV positive I hate when I am told to use my inside voice. Because I have had no voice for so long that when I have found my voice I will shout and make my self heard.