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Testimonials

I refuse to give up hope for either of us

My name is Esme. I'm 46, and have had CFS/FM since 1974, after a bout of Mono. I was diagnosed at age 32. After the mono, I never felt the same again. I carried on as usual, but just thought I was "delicate" -- that is, I was easily tired, needed a lot of sleep, and any time I overdid it, I paid for it by becoming ill. I developed a long-term problem with my sinuses and allergies, which I have problems with to this day. I was able to live fairly normally until I had my daughter at age 29. After that the fatigue became unbearable. I started hearing about the "yuppie flu" while I was pregnant, but it was not until my daughter was 2 that I learned more about CFS, and it answered all my questions about my health, including the chronic pain in my neck and shoulders. My GP actually agreed with my diagnosis!

I've struggled to earn my way monetarily as a member of our little family. I now work for myself, but could never support myself if I had to live alone.I would say my condition in my 40's has improved dramatically, except for the fact that I now have developed migraines, which aggravate my CFS. I've had to deal with an unbelieving husband, which has been very painful, and caused me much guilt and self-loathing. He has come to accept it, but is not exactly whole-hearted with his support.

My daughter always seemed very healthy and energetic, and I always thought, "Thank God she's not like me." At 10 she started having prolonged bouts with flu, cold, sinus infections. After a particularly bad flu in grade 8, she could not fully recover. She was diagnosed with "post-viral fatigue syndrome" by a pediatrician. Neither this doctor, nor our family doctor (now different) would agree with me that she had CFS/FM. They both said, "You don't want to label her with that at HER age!" Well, the diagnosis has been confirmed this past year by two CFS/FM experts in Toronto. She has terrible trouble with migraines. Last year she had to start going to school part-time, which she still does today, and even so, has many absences. She's had to give up drama, flute, and dance due to her illness. My talented, beautiful. lively daughter struggles to get through most days. It breaks my heart. Nevertheless, she has kept her sense of humour, her sense of style, and still has hopes of becoming an actor. I refuse to give up hope for either of us, but especially for her.