Did any of you find that being in limbo or being newly diagnosed that you were actually questioning if you wanted to even be here living with the prospect of this disease? Maybe it’s because I feel like I don’t have much in my life good anyway but the thought of this disease having it/being in limbo just tops it off really.
Hi Anon x I guess the answer is yes from me!
It certainly entered my head while I was really bad last year with a 4 month relapse and I was made redundant and lost my career directly because of it … and the suffering seemed to go on & on forever!
However even at my worst it was always only a passing thought - except for once or twice after a bottle of wine and a blow out with one of my family -
Looking back some of the words I would use to describe how I felt are daunted, despair, panic, fear, vulnerability, loneliness & isolation. The only positive ones I can think of are strength & hope!
I still feel these things sometimes when something reminds me that I may be a hell of a lot better than I was but that it hasn’t really gone away - it’s still there threatening - eg when I get somthing new - like the numb & tingly patch that for the last 4 weeks has been niggling me on my back - just below left shoulder blade. It’s almost like ‘it’ is there poking me day and night saying
“I’m here! I haven’t gone away! I can come back whenever I feel like it and wreak havoc with your life again!!”
Anyway what I’m trying to say is when you are in the throes of it like you are - feeling so ill, isolated and helpless - thoughts like that are natural - especially like you say if you are at a point in where other areas of your life are not good either x
So go easy on yourself - think strength and hope. Talk to people on here or anywhere you can! Actually there was a thread on here last year about suicide and you would be surprised at how many people think about it - that’s the nature of chronic and debilitating ilness I’m afraid x
Hope it helps to know you are not alone xxxxjenxxx