This is the best explanation for how it feels to have this illness that I have seen even though it is written about lupus. She is also right that I am not sure which I miss more–the loss of the ability to just live life without thinking about enregy expendature and balancing and rebalancing what I do each day based on how life changes–just the spontaneity that I used to have–or the fact that there are so few spoons now–that even if I plan life well, I still cannot do all I need to do much less what I want to do. One is the loss of potential or spontenity and the other is a feeling of loss of competence or being able to fill the shoes that I used to wear. I miss the fact that I can no longer plan a future because I do not know what life is going to bring and I cannot celebrate my past because it is gone. All there is is each day and each day is a struggle.
Sometimes With-little hope.