HIV Stops with me James Chud

There is a website that needs mentioning - HIV Stops With Me.com (no spaces) These folks also publish personal stories like my own, along with informational articles, polls, and information about resources for us HIVers. I have recently agreed to be a correspondent for this organization, even though there is an overlap in purpose with my own. I am not in this for the ego gratification, only as a budding activist in a community dear to my heart. I am motivated by a need for recognition of a problem that is being totally over looked - the needs of the silently disabled. Long term HIV survivors might not have opportunistic infections plaguing them at present, yet they remain unable to work routinely because of the litany of symptoms other than infection that are part and parcel of HIV disease. Society's definition of disabled needs amending to be fair to this community. I welcome any and all to throw their two cents in.

The first paragraph was originally posted on 8/05/07 - I am adding on now because I see how incomplete it was.

There are indeed two types of 'silently disabled' people. The first, as I mentioned above, suffer from any one or more of the 'co-morbidities' normally associated with aging in America. Heart disease, diabetes, COPD, arthritis, alzheimers, etc. The interesting thing that research now supports is that men over 50 with HIV infection experience twice as many of these issues as those who do not have HIV. Long Term Survivors also deal with debilitating fatigue that is undeniable. For me it has been shocking. There are good days and bad days, but when it hits, I just can't muster the energy to get my butt out of bed. It is so severe, that I keep a large container next to my bed in which I can urinate when I am too tired to even make it the three steps to my bathroom. I remember that when it first started, I could not figure out what had worn me out so much - the problem was that there wasn't anything to pin my fatigue on other than HIV.

I have been an active person all of my life, so the energy thing hit me extra hard. I can only offer this that if it happens to you, trying to figure it out will prove very frustrating, Just accept it if you can and learn to work around it.