Not too long ago I found a mailing list for people with CSS, so every few days I get an e-mail with messages from people all over who have this disease and talk about how it affects their lives, things they have found to be helpful and just generally have a place to go where people really can relate to how we feel. When I first starting reading what other people said I was amazed, for the first time I didn't feel so alone. My friends and family have been amazing as we learn together about this disease, but because it is so rare and no one really knows what it will entail, there were times when I felt overwhelmed with all the problems that kept popping up and all the guessing and wondering. But then I found this mailing site and there were other people experiencing the same things I was going through!
Anyway, today I was reading it and there was a posting from someone with Lupus and she had written this analogy about life with a chronic disease and how it affects daily life. As I read it, I was saying "yes! This is totally it! This is how it feels!" I think her case is more extreme than mine, but the principle is the same. She calls it the spoon theory and you can read it at:
http://www.butyoudontlooksick.com/the_spoon_theory/
2 comments:
That was great (sad, but enlightening). Thank you. I hope you know we are here if you ever need something. :)
I love you sis!
:)
Wow what a story. Good luck coping with your disease- I hope everything turns out alright. I guess you just have to learn to enjoy every minute that you feel good and try to skim through the awful parts...
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