ME/CFS: Our Family's Story

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i had a sudden onset to ME/CFS following a viral-flu-like illness just after arriving on holiday in England (after flying long haul from Australia) in 1993..The flu-like symptoms remained and i struggled to continue working full-time as a Speech Pathologist in Melbourne, Australia. i had been married for just a year and was happy, unstressed and very socially & physically active prior to the illness. i am now 52 years old so have suffered from this illness for 23 years though the course has been variable. i was fortunate to be diagnosed within a few months because i worked alongside teachers who visited students with ME/CFS in their homes. A wonderful & sympathetic person listened to my symptom description & suggested I had CFS. she gave me a tape of a presentation from a paediatrician who specialised in adolescents with ME/CFS. (Kathy Rowe). I didn't realise how lucky I was to be diagnosed so quickly. I saw a  physician who recommended continued activity and advised that the condition would resolve!.

Initially, after 2 years, i was 95% recovered. However, the condition returned during 2 pregnancies & breastfeeding. However, i was still well enough to work part-time and managed to lead an almost normal (but challenging life). When my children were small they assumed all mothers napped in the afternoons!

About 8 years ago, I participated in a 4 week, in-house program which included GET & CBT. i deteriorated dramatically after contracting a virus following the program. I was forced to give up work, hobbies, my limited exercise & social life and become a house-bound recluse. I have tried various experimental treatments during the that time but without success so far. I am lucky in that I have a very supportive & understanding husband who has remained by my side as we watched all our dreams & plans dissolve before our eyes. I consider myself fortunate to have two wonderful children.

When my daughter was 14, she suffered a normal viral illness - but has never recovered. Her ME/CFS was quickly diagnosed & treatment commenced. She missed 1/2 of the Year 8 school year then progressively improved increasing her school & social participation gradually during the last 5 years. She currently is studying her VCE (final year of secondary school) with 80% of the normal academic load. She grieves for the sports, part-time jobs, student exchanges, overseas trips that ME/CFS has stolen form her life. We grieve that she cannot reach her real potential with ME/CFS dragging her down.