This year I will be half a century plus five however in my mind and for my sanity I am thirty eight and three quarters. It is not just that separates me from others as I also have PN (peripheral neuropathy) in both legs and my left arm. But it's still not that there is something else. I have lived with HIV and AIDS for well over 20 years and I am told that my RA came about because of my HIV status.
I don't blab about my HIV status because I don't really want the whole world to know, it's a very private thing and that part of my body is in good order. It's the RA that is destroying my life. I have been on numerous RA regimes, Methotrexate 25mg weekly at the moment and I am waiting to start tocilizumab and there is great hope that this will be the drug for me however as we know it could take months for it to be effective. How will I last that long when I am unable to wash myself, dress, prepare a meal, shave, toilet myself and as for walking that went months ago. I have a wheelchair that can only be used outside because our apartment is too small to use it internally. I have a rollator and walking sticks but because my pain is so severe I no longer walk, I place feet, stagger, lean on walls to get me from bed room to toilet to lounge. Today at 1330h I am still sat on the side of my bed unable to move because I have an awful lot of pain in my shoulders, elbows and hands.
I am blessed to have a truly magnificent partner and it is him and him alone who provides me with care and it is getting harder for both of us. He is my all and without him I would be in a nursing home, and yes we have discussed that. What worries me the most is, will my RA have progressed so much that the new treatment might not be able to help it, will I ever get my early morning walk on the beach? What will I be like in a month's time, 2. 3 or 6? Even all the love in the world won't beat this but am I the only one who lives a life like mine.