My battle to recover from debilitating ME (From The Argus)
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My battle to recover from debilitating ME
4:49pm Monday 20th February 2012 in Comment and Analysis By Siobhan Ryan, Health Reporter
Julia Trewick of Brighton, with her daughter Sophia who had ME but has recovered – Picture by Terry Applin Buy this photo »
Sophia Trewick was diagnosed with ME in January 2010 by consultant paediatrician Kamal Patel at the Royal Alexandra Children’s Hospital in Brighton.
She had suffered a virus in August 2009 from which she never seemed to recover.
There was little treatment the hospital could offer, apart from medication for her migraines and monitoring.
She also tried an alternative treatment, called the Lightning Process, with the help of life coach Sherree Ginger.
With all the support and back-up treatment, Sophia managed to battle her way back to health and is now doing well at school.
Here she talks about the impact the condition had on her life.
Aching
“When I had ME I felt very tired and achy in my legs.
Sometimes I would have to sit out of sport at school and when I tried to play tennis because my body got tired so fast.
"I didn’t want people to think I was weak so sometimes "I would try and carry on.
"It didn’t work, I just felt much worse later.
"I often found it hard to get to sleep and trying to work on the computer made me feel sick too.
"Sometimes I felt very sick and had a churny tummy and this made me not want to eat, which was not like me at all.
"Primary school was a very different thing for me because I couldn’t do the things I loved anymore.
"My friends were surprised because this was not like me at all.
"I told some of them what was happening but only a couple of them actually understood.
Dr Patel only wanted me to go to school part-time and "I had to build that up very slowly to half a day, which was even weirder for my friends.
"They thought if I was well enough to do half a day then why couldn’t I do a whole day?
"I ended up only doing maths and English at primary school which was alright for a while because I enjoy English, but I was missing things like art, music, history and PE.
"I think the teachers did their best.
Difficult
"They hadn’t had a pupil on half days before but some of them didn’t seem to understand that I didn’t want to be treated as special or different. I wanted to be treated like all the other kids.
"I know I was a bit different at that time and sometimes it was difficult to concentrate if I wasn’t feeling right but I didn’t want the teacher to over focus on me.
"All I needed was for them to know but not make it obvious.
"Sometimes if I felt really unwell my face would go a grey colour and it helped if some of them would recognise this.
"I have played tennis for a long time and it was very frustrating for me not playing.
"When I was very ill I think half the reason that I got better was because I had lots of different goals that pushed me forwards and they gave me the motivation to try.
"My tennis coach supported me for the whole time and I am very grateful to her for helping me.
"Dr Patel told my mum and dad about the Lightning Process which I did at the end of that school year when I was ill.
"Sherree Ginger is incredible and I would recommend her to anyone, young or old.
"She taught me some techniques and strategies for dealing with my symptoms and they have stuck with me ever since. I still use them today.
"On my first day with Sherree she told me to go swimming with my mum, something that I hadn’t done in ages. It was brilliant.
"I just used my newfound strategies and I was OK.
"When I do big trips or go away from home on a school trip without my parents, I can get very scared and tired and worried that ME might come back.
"I think I had grown reliant on my parents when I had ME and to be split off from them makes me not feel so confident in myself.
"I use the things I learnt when I was doing the Lightning Process so that I feel more confident.
"Now I am at Dorothy Stringer School in Brighton and I am doing all the things I like to do with my new friends.
"I am back at school full-time and I have been since the beginning of Year 6.
"Finally, I think the most important thing for me was the support I got. Not just from home, from everyone.”
