Like a spice to be sprinkled over my food, I need some hope right now to make my life more palatable. I've been researching CCSVI (Chronic Cerebrospinal Venous Insufficiency) and contacted a few doctors but haven't received any exciting responses. Unless you consider notification that I'm on a waiting list as "exciting."
Until a few months ago I had no hope. It wasn't as depressing as it sounds---I simply had accepted a fate of slowly going downhill with my symptoms. I had become used to planning my daily activities in segments that lasted no longer than three hours door-to-door. Because my short-term memory was so bad, I carried paper and pencil around everywhere I went (it was how I could be sure something important wouldn't be lost in my unreliable memory bank). All the adaptations I made were completely woven into my life in a way that I thought was permanent.
However, after hearing about some of the improvements gained by patients treated for CCSVI I regained some hope. Life tastes slightly better these days. It may be a fleeting feeling but for right now I'm enjoying a dash of hope.