We’re being as positive as possible these days…. Things like not talking about the illness in front of her, not asking her how she feels yet, of course, being open to listening at any time. ( Every evening she still fills out the record sheet but that’s the only time it’s really been brought up the last few days, unless we’re at the doctors)
Sometimes she will quietly say things that encapsulate so beautifully how she feels that I kind of have to save the words up to process later.
Thursday “What if I get so tired I fall asleep and – bleugh – I die?” (It was the ‘bleugh’ that did me in, it was a kind of fatalistic, popping noise)
Yesterday “I really like driving. Not driving driving, being the passenger. Because I can go places without using any energy.”
I’ve debated whether to place these comments in the public domain but they give such valuable insight into how it feels to be twelve and have CFIDS that I’ve decided to go ahead.
I’d love to hear what your child has said that helped you understand how they feel.