A 15-year old teen girl, a good friend of ours from our local group, reads a poem she wrote about living with ME/CFS:
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
How sad to be so young and faced with this terrible disease.
ReplyDeleteIt's funny, I watched this video and the first thing I thought was, "She doesn't look sick!" The same thing I'm afraid everyone is always thinking about me.
ReplyDeleteI know I can seem as bubbly and healthy as her myself for a short time, even though I feel hollow and feeble inside, and then I go home and go back to resting for days at a time.
ha ha Alison - I sometimes find myself thinking the same thing when I meet someone with ME/CFS!
ReplyDeleteActually, Christina is a good friend of ours. Before she started treatment for OI, she would sometimes faint 6 or 8 times a day! Her POTS is very severe. She had a very bad winter but is actually feeling pretty good right now, thank goodness.
That is one of the worst paradoxes of this illness, isn't it?
Sue