Life-support at all costs

The stream of new people from this or that department that might be of help in my situation never seem to dry up. Yet not a single one has actually managed to do me any favours. I´m waiting for the same answers now as I did in april, buy surely I must understand that from may to august Sweden is on holiday and sick people just have to wait. In the meantime I have become more ill, more dissolusioned and more desolate.

The Invest in ME conference in London this year sold me their DVD, and although it said "treatment" with big red letters on the cover (among other things), I don´t know why I let it get to me. There might be something they do in the US to a group of ME sufferers that tested positive for a certain virus in a stomach biopsy, and 28% of them have shown some improvement. But that is in the US, and will never happen in Sweden. Besides, I am one of those who didn´t have a virus infection at the onset of my illness, so I´m even a minority within this "pretend-it-not-there-and-it-will -go-away-government-policy" illness. And all I can do is to look out the window and try to stay positive. They don´t know what they´re asking!
Indeed I wasn´t depressed at the onset of this, and I managed to maintain a bit of hope for the first year because I sometimes had periods when I could take a bus and visit people or even drive to do some shopping.

But those periods are long gone. I smell and don´t even remember when I showered last, but I don´t dare to do it because then I might not even be able to go to the toilet by myself afterwards.

There is an ME forum where cherpy housewives say they can talk themselves in to thinking that they get the luxury of staying in bed all day. Well maybe I could too if I in between also could have days when I slowly could walk in a park or have a coffee with a friend.

No, who am I kidding. I am a pessimist by nature and I never liked staying in bed, it will never seem like a luxury to me, period. I am alone and don´t remember what human touch is like, the friends I used to have thankful for the distance that makes it easier to pretend I´m not there.
I see no hope anymore and I don´t want to hear that I´m too young to be written off at the same time as no officials will lift a finger to help me. The cost of keeping me alive and suffering will escalate when I develop more illnesses thanks to the sedentary nature of ME, but yet this CPR must continue indefinately because its a code of conduct that western healthcare is built upon. Regardless of my wishes.