My Journey With CFS


's story

Julian is one of a number of beneficiaries who have developed ME/CFS type conditions after sustaining a head injury.

He has written this article because he wanted to share with others the experiences he has gone through over the past six years and explain how SALUS has been so supportive to him.

I was mid 40s when I was struck on the head by a golf ball. I was in good health prior to the incident and had a progressive career as the Managing Director of an insurance company.

However, following the incident I have suffered from the following conditions:

  • Headaches and migraines (particularly ‘ocular’ migraines)
  • Shooting pains in my head
  • Tinnitus
  • I lost interest in life
  • Extreme tiredness (I sleep on average 40 50% longer than before)
  • Balance issues (I was diagnosed as having a damaged middle ear)
  • Memory and concentration issues
  • I do not deal with stress very well nowadays
  • I have noticed a lot of muscular and joint issues

I underwent a year’s treatment for my balance issues which have much improved. This was daunting at the time as I had to visit several hospitals many of which were based in London. I used to feel spaced out and the whole thing was exhausting. However, I always remained positive that I would improve and would listen and act on the advice I was given.

I involved my GP in all of this process and she was extremely helpful. She did not know all the answers but was open with me and tried to find solutions. A key point that my GP made was that medicine still has huge amounts to learn about the brain (which I took to mean that I may not find out exactly what I am suffering from).

Following my treatments in London the tiredness, migraines and tinnitus symptoms still continued – my time at work was considerably reduced for at least 3 years. My doctor therefore referred me to the ME/CFS unit at Nuneaton hospital who diagnosed me with CFS. They provided me with a fact sheet and supportive suggestions which I again followed.

“It was at this time that a friend told me about the SALUS group. I read the SALUS leaflet and went onto the website. It was great to know that there was a support group who cared about people having similar issues to myself.”

I started attending the King’s Heath group about 18 months ago and found the group extremely supportive in the following ways:

You can discuss conditions which people can relate to without judging you. This can either be on a group basis or one to one as you prefer.

We are offered suggestions to help improve our well-being. There is always an understanding that if we are concerned about any suggestion we speak to SALUS and then see our GP. Examples include meditation, yoga, diet, managing work life balance and exercise.

I have now taken yoga on a weekly basis and have completely revamped my diet. I now eat a fruit and vegetable based diet. Coffee is a no-no – I do admit to not always sticking to this but we all need a treat so don’t tell SALUS! After returning to full time work, after various consultations I decided to move to part time from 2015. This was to manage my tiredness and stress levels. I found this difficult at first as it was something I didn’t want to do but I now realise it was the right thing for me. Yes I do get very tired at work but I do have recovery time so on balance it works for me.

“In summary I would say find a GP that cares, remain positive, use your local SALUS support group and heed the advice you are given. This may not completely cure you but I feel it has really helped me.”

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