Just finished reading "Still Alice" by Lisa Genova: This story has been made into a movie and actress Julianne Moore received both an Oscar and a Golden Globe. I have yet to see the movie but now (after reading the book) I am very keen to! It is an emotional read and I laughed and cried along, maybe more than most. I was able to draw parallels that a perfectly healthy person probably cannot.
While my mind is probably okay (I hope!) my body is failing me and I share the fears that we read about. I am genuinely afraid that one day I won't be able to do things for myself and that I will become a burden on my loved ones. Like Alice, I have also formulated my own exit strategy so that I can leave this world with dignity. And... even more like Alice, I am afraid I will leave it too late!
Alice had five questions that if she was not able to answer, would lead her to instructions on what to do next. I have no such a plan - not yet. But, I have had the discussion with both my husband and children that if I was at a point where my quality of life was less than that of a beloved old pet with hip-dysplasia, they are 100% clear on my wishes.
My heart broke for Alice and I understood her frustration as clearly as if it was my own. I think the story even made me feel grateful (for the first time in a long time) that my failures are mostly physical. I am still far from incapacitated and still independent and mostly functional but I have that vague awareness that this will not always be the case and at times even have a week or two to "practice being useless" when I have a bad flare.
I might even be inspired to write my own story, in as much as it would be based on a woman living with CPS and other largely unheard of invisible pain conditions.
Having just come out the other end of yet another unsuccessful intervention (TFI) that left me worse off for over a week and then back to my unpleasant normal self I think that I might have enough material to actually get started on something more important than this little blog with it's little, but well loved, audience.
First I have a bit of a "TO DO" list, but after that, I will give this some more thought.
