The infected lymph node was removed, and I was in hospital for a week on antibiotics. I was discharged and some months later I still could not get out of bed. I had no energy at all to move, I could not talk to my family and I couldn’t tolerate light or noise, so I had to have a dark quiet room and a stairlift to get downstairs.
I had no energy at all to move, I could not talk to my family and I couldn’t tolerate light or noise.
After a few months I was referred to a specialist children’s CFS/ME service. My parents were taught about techniques to manage CFS/ME, and very very gradually I began to get better using activity management. My parents would divide my time to ensure that after an energy intensive activity (such as reading) I had a period of rest straight after. By doing this, the amount of time I spent on energy intensive activities gradually built up.
After a couple of months, I could be home tutored for 10 minutes a day, which increased by a few of minutes each week. I suffered a few setbacks when I overexerted myself, so had to return to the activity levels I had a few weeks before and build it up again. I also struggled with sleep, both going to sleep and staying asleep, so I was prescribed medication which helped.
After missing a year and a half from school, I began to go back for one lesson a day. I kept gradually increasing my activity until I was back at school full time after 3 years. I took a reduced number of school leaving exams, but I was still able to go to my first choice of University and study the course that I wanted.
It took around 3 years to class myself as recovered, CFS/ME is no longer a part of my life but I listen to my body and if I am feeling a little tired then I make sure that I look after myself with 8 hours of sleep and relaxation time.
It took around 3 years to class myself as recovered, CFS/ME is no longer a part of my life.
I am in my mid-twenties now and I can live my life the way I want to. I lead a very active life including regular scuba diving, swimming and yoga. I am so thankful and never take my health for granted.
The author of this post wished to be anonymous for personal reasons. She lives in England. The picture is genuine.