It is possible to live with this disease. Of course it is. But it is so different and because it is so unwelcome, unwanted, it is bloody hard. Every day challenging myself to get on with it, to cherish positive moments, to bear with the hard stuff, to tolerate accomodate my body's - often dramatic - need for rest. To keep the fears and depression at bay. To accept and maybe one day welcome this new life, to skip over the annoying symptoms and get on with what this illness allows me to do. To let go of the dreams and plans I had which all needed my old, healthy and fit body.
It is a long goodbye.