I know some other people are envious of me. Ridiculous, but there we are. I often wonder if they would want my poor health along with the life of Riley they perceive I live.
I know I am fortunate. I know things could be much worse.
Yet I am powerless and the more my disease progresses the more powerless I become. It seems to me that this is the one thing that has NOT changed since my childhood. I was powerless then and am still powerless now. Nothing has changed in that respect. I can’t decide to leave without losing everything I have-dogs, yarn the dyeing, the car and I would find it very difficult to care for myself. I don’t want to leave, that isn’t the point. I just hate feeling trapped and powerless and having very little control over my life.
I absolutely dread the possibility that my disease will see me totally dependent upon others, so much so that I will not let that happen. No way, not ever. I will NOT be at the mercy of ‘healthcare professionals’. I have been there done that and will not again let others have that power over me.
Like many people I fantasize about winning the lottery. I don’t dream of fancy cars and gold taps. I dream of having a full time housekeeper and an aide on MY terms. If they are no good or take the piss, I can fire them and get another. Money is power. I think only those who have both think it isn’t.