My Journey With CFS


's story

Janet was at a complete loss with how to deal with her 17 year old daughter’s diagnosis of Chronic Fatigue Syndrome in December 2013.

Only after her GP suggested she contact Salus Fatigue Foundation did she begin not only to learn how to support her daughter to improve her health and wellbeing, but also to enjoy time for herself and meet others who understand the impact of CFS.

“As a parent, the diagnosis was scary, and I was at a complete loss with how to deal with it”

My daughter was diagnosed with CFS in December 2013 at the age of 17.
This followed from having glandular fever in 2012 and a particularly nasty virus in 2013 that left her feeling tired all the time and very down and withdrawn.  The GP gave us the contact details of Salus and I contacted them in January 2014.

From the first contact I was welcomed to get involved with Salus activities and encouraged to attend the education classes.

“I found the classes on nutrition, the immune system, pacing, stress and sleep well structured and very informative particularly as everyone was encouraged to talk about their experiences, symptoms and to ask questions.”

Initially my daughter was upset by her diagnosis because there was no pill that was going to make her better and at first she was resistant when her illness was discussed.

The breakthrough came when she accepted that it was affecting her life and that in order to improve she had to accept help. Over time I gradually introduced changes to her diet, added vitamins, gave her suggestions to improve her sleep and talked through the concept of pacing her life. She stopped walking to school but overtime took up gentle yoga at home using the Wii to keep active.  I particularly concentrated initially on the things she enjoyed like aromatherapy oils and candles to reduce stress.

My daughter did not want anyone at school to know because she didn’t want to be different but with my encouragement we contacted her tutor.  Her teachers actively supported her because they could see she was trying to continue under difficult circumstances.

The last year of A levels has to be the hardest year at school with exam pressure, coursework and planning the future.  By looking after herself and recognising her limitations she successfully got through her exams and she definitely improved once this stress had gone.

The family and carers support sessions have been a source of information and reassurance that we are  not on our own.  In addition, the retreat days enabled me to enjoy time for myself and meet others who understand what CFS is about.

“Salus has definitely given me the knowledge and confidence to stay calm and actively support my daughter.”

My daughter got her ‘A’ levels and has just started a degree in journalism.  She realises that she has to put her health first but so far she has been able to enjoy being 18 and away from home for the first time.

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