“I was 13 years, and had no energy at all, but now I live my life the way I want to”

I first became ill at the age of 13 with severe Glandular Fever. The lymph nodes on my neck were severely inflamed and I was hospitalised due to an abscess developing on one.

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Female

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.

Children and adolescentsFemaleSevere ME/CFSME/CFSGraded exercise therapyActivity managementOther methods

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