Hi Steve, am pretty sure I had read your story years ago.
Yeah, I do feel all these procedures may or may not be necessary, but I suppose if it means living a little longer with some sort of normality then so be it. But it’s when things start changing and it’s either keep on going day by day with the possibility of not making it or taking the chance to either cure ( big if ) or prolong life.
In my case I didn’t really have much option last time, it’s was surgery or die.
This time I feel I am a little more inclined to say no, but of course that could change, I really don’t know but if last time was anything to go by then I would tend to say defo not. I know for fact they would end up amputating, they had mentioned it before.
I am 52 this year and feel that ain’t a bad innings, if I get to say 60-65 then I will think I had done well.
I also now have other issues because stupidly I did bodybuilding, and ended up injuring my shoulders and also arm tendons. But that’s not a huge prob just painful.
Oh well what can we do in all honestly.
I will never forget something my brother said to me whilst in my darkest times, undergoing surgery which didn’t go well.
As we all knew this wasn’t looking good at all he said, if it were him he would rather go while under anesthetic than awake, and I tend to agree.
Just seemed to resonate with me, but my only issue is who gets left behind and the pain it must cause.
But the biggest issue some of us face is being within the hands of professionals that don’t know of it, or how to deal with it, that’s the thing that really worries me, you feel you surely are in the best place but as I have seen time and time again with our condition that just isn’t the case.