Thursday, 20 March 2008

On Monday, 18 February I saw a movie (IT'S MY PARTY) that gave me the reason why I was not finding any story regarding PML apart from the medical records that are completely useless for living one's life. The reason why there is no one to tell the story about PML is because they are all dead; in a very twisted way death when you have PML can be a blessing in disguise, however in my case PML is from today 10 years and although something creative is coming out in the last few weeks, most time of the 10 years were a continuous nightmare.
let's face it, society is not ready for somebody with PML to live this long.
Whenever I meet other disabled people I get common identification in the way that my individual problems are not a reality for me exclusively but nearly every other severely disabled person experiences those kind of problems at one time or another or sometimes all at the same time; and so I found out that Social Services do not work for anybody except for the people working in the Social Services department (as I say very often "they sit on very expensive chairs"). I have written several letters to my local MP and I never got a satisfaction from her at all, many letters- yes, plenty; but answers - none. So everybody seems to be playing the game of bureaucracy in an imaginary castle. The voluntary organisations try to do as much as they can, but let's face it they are voluntary they don't get paid, so there is so much they can do.
it seems that AIDS only remembered on Christmas, so at this time of year the charity organisations get money from the public in general but the rest of the year - nothing; however people like me live the whole year, not just Christmas.
The housing is a problem for everybody, but in my case it's even worse; as I am in a wheelchair full-time I need to propel myself everywhere in my flat, the nightmare that it is for me moving from one room to another when I am alone (when I am with a carer, the carer pushes the chair) is only noticed in the pain I feel in my neck, shoulders and upper back. But since I live in a house for somebody with mobility problems, nobody gives a damn to the fact that I do not have mobility problems, I just don't walk, that is a different thing all together.
So, all in all this last 10 years would have been better if I had died sooner, so I would not be such a difficult person to be looked after by all the different people that helped me through this last 10 years. TO ALL THOSE PEOPLE, PASSED AND PRESENT, THANK YOU VERY MUCH INDEED FROM THE BOTTOM OF MY HEART, BUT I WILL BE STILL CRYING OUT THE SAME STUPID THINGS THAT I CRIED OUT BEFORE.
TODAY ALSO IS THE 25TH BIRTHDAY OF MY EVENING CARER, SO JOIN ME TO WISH HIM HAPPY BIRTHDAY TOO.