That said, the last year or so has led me on one fairly hellish adventure.
In August last year I tried my fifth - and what will undoubtedly be my final - ketamine infusion. Even now I can remember almost nothing of it beyond watching my nurse flush blood from my IV line. I have vague memories of seeing flashing lights and stars, and starting to laugh uncontrollably - I know my poor Dad who was beside my bed said later he thought I was joking, then he became very frightened for me when he realised I wasn't. At some point after that my muscles began to twitch and jerk, throwing my whole body into intense spasms that lasted for more than 48 hours.
Neither my parents nor my doctor will tell me what went on during those few days, just that I am 'lucky not to remember'. It's episodes like this that really bring home how hard a disease like this is - not just for those of us who feel the physical pain, but those who care for us and those around us. Our families, our close friends. Even the doctors we form long term bonds with through our treatments.
More recently, I've been seeing a couple of new doctors. I've written here before about having problems with fainting, with funny fevers and so on. It seems that they are indeed a problem with my autonomic nervous system - and the line of thought now is that I have an underlying genetic disease called Ehlers Danlos Syndrome. EDS interferes with formation of collagen- one of the 'building blocks' of skin, muscle, ligaments, organs. It accounts for a lot of things that we've noticed over the years - my very loose/flexible joints, on and off joint pains, my poor healing, easy bruising and so on.