Giving in...giving up
My ME/CFS started on the left side. I have frozen left toes, cannot stand on my left foot, cannot walk without assistance except sliding on my wood floors around the house. Weaker overall on the left side and because of this, I have now pulled internal muscles/ligaments in my right hip because of favoring the right side, have pain in shoulders etc., form being unbalanced. While I had relapsing/remitting CFS I would get strong all over, but once going into a crash, the left foot was the very first telltale sign and by the next day I would be bedridden, 1 day. The crash would last 4-6 months. Now I am two years permanenlty disabled and housebound mostly. No ability whatsoever for much of anything except struggling to take care of my house and feed my husband...I am determined no matter what.
Tests for MS did not show anything all this time, neuros looked at me and told me to take antidepressants. I do feel the neuro weakness coming from right side of my head. The rest of it, the OI, heart problems, no sustainable ability, digestive problems and cognitive lapses are whole body.
Perhaps in my case, since my initial infection led to mono and Guillian Barre, I have tough neuro problems. The Guillian Barre started on the left, ended up totally paralysed from the waist down, partial waist up and left side of face.
After almost 30 years building to the point I am at now...I don't even push for tests or anything...it feels like there is no hope now at 57. I don't have my life, friends, career...nothing except this computer and my TV being my window to the world.
Funny, for years I tried with doctors and now have no fight left in me. Feel like I am dying from the inside out from this and there is nothing that can stop it now.
How can you get treatment if you no longer have an income and can barely afford you co-pay...answer me that one. I can barely even come to this website anymore...keeping information in my head is too hard. You have to want to figure this out and I did for almost 30 years...left, right, whatever...the virus is winning. The damm virus is finally winning and ending my race.
Sorry to put such a damper on this, but without real treatment and doctors recognizing this...I have no hope period, so most of the time there is no point in going on and on about how I feel. I feel bad all the time. Now I am trying to just life day to day with no ambition, no vision of a future...no hope. This is where is comes to, it beats you down until there is not even curiosity left. I am not one of the lucky ones and instead of concentrating on this DD killing me everyday, I try to just live, just live and cope. From how I feel now...all the struggle for years, all the denial, all the doctors, all the supplements, everything I have read, done, participated in...none of it can stop it. This illness is taking my life. Tell me how you solve that.
Concentrating on CFS/ME daily is frankly a waist of precious time now. I try to be happy, that is all, just as much as I can for as long as I have. This is a terminal illness and I finally know that. All any of you can do if you are young still and have strength, fight for those of us who have to finally give up, give in, stop fighting and find peace with it however we can.
JJ
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