This is fairly negative so it may be best left unread but it's how I feel; nobody, however, wants to hear it and this is the only place I can think of to say it so I'll just apologise in advance.
I hate having Parkinson’s. I resent it, I am fearful of it and I can find no degree of real acceptance whatsoever. I hate the impact it is having on my friendships, my job, my choices my present and my future. I deeply resent being advised to think positively as though it is a switch that can just be flicked on that will make everything better.
I put my best game face on and go through the motions to make other people happy but in reality, I do mind that I'm no longer able to do things such as going on walking or cycling holidays with friends. And I do mind when people walk on without me and arrange to meet me later because I’m slow. I want them to slow down and wait.
I hate other people’s reactions to this condition. When I'm out, I see others avoiding PWP and I hear the comments that they make and I realise how very, very far away from understanding, awareness and public acceptance of this condition we are.
I can’t contemplate the future and I find nothing much to celebrate in the present.
Nobody wants to hear this. Friends read PUK's website and tell me that I just need to eat better or do a bit of Tai Chi and socialise with others ‘like me’ (then nobody will have to wait for me or be embarrassed by my shaking) oh, and if I could also just think positively, it'll all be fine. My life with PD is only challenging, apparently, because I'm not doing the right things and I don't have the right mind-set.
I know that nobody can sort this out for me, but right now it doesn't feel fine and I want to be allowed to say so without being judged or excluded because I have the wrong attitude and I might infect others with my negativity.
I know that I'll regret posting this in the daylight, but it's stupid o' clock right now and I seem to have less resolve in the early hours so I'll just apologise again in advance. :-S