by Robyn Jones


A thought-provoking insight into a lifetime spent with the debilitating disease Myalgic Encephalomyelitis.

I began to write my experiences with Myalgic Encephalomyelitis (M.E.) also known as Chronic Fatigue Syndrome (C.F.S) as a way of dealing with all that the illness has thrown at me, as well as those close to me, since I was 6 years old.

As I continued to write, more and more people kept asking about the disease – they knew someone with it, or had heard of it but didn’t know much about it – wasn’t it just feeling a bit tired?

It dawned on me that maybe my jottings could actually prove useful – providing a true and honest insight into the disease which, even today, is thought by some to not even exist.

Sample Chapter

A Cartoon-Inspired Diet

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   We may have obtained a name for my illness, but sadly the name, ‘ME’ doesn’t go hand in hand with a cure.
 I continued to see my private consultant, who decided the best course of action was to try and ease my symptoms. His first proposal was to find out if I was sensitive to any foods, reasoning that if I was, then this reaction may be aggravating my symptoms. He therefore started me on The Stone Age Diet. I think it is also known as the Elimination Diet, but I am glad that it was presented to me as the ‘Stone Age’ diet. The name was the best bit of the whole thing – all very Fred Flintstone and Barney Rubble, and I liked watching The Flintstones on TV. That link made it less intimidating, and far more inviting.

   I remember sitting at his big wooden desk looking across at him when he described the diet to Mum and me. I was mortified on hearing I would no longer be allowed to eat my favourite foods, and burst into tears. Why couldn’t I just have a pill or some medicine that would make everything all right - like Calpol did when you had a temperature, or a cough sweet when you had an annoying tickly cough? Why did I have to go on this restrictive regime that felt more like a punishment than help?

I needed to endure this limited diet for at least a month to start with, to allow any last remnants of unsuitable foods to clear from my system and for any withdrawal symptoms to pass. I then had to gradually introduce one new food, in its purest form as possible, every three days and take my pulse before and after eating it, recording the results for the consultant to look at during the next consultation. If my pulse was much quicker afterwards than it had been beforehand, or I experienced symptoms such as bloating or fatigue, then I was deemed as being sensitive to that particular foodstuff and should try to avoid consuming it. 

   The test I looked forward to the most was the day I had to try dark chocolate. Chocolate on medicinal orders - I liked that idea! I remember going to the local newsagent the day before the test and buying a bar of Bourneville chocolate. I sat at the kitchen table, pen and paper to my right to record my results and my pulse, my watch in front of me, and the delicious bar of confectionary to my left. I took my pulse, and then carefully unwrapped the bar, flicking my forefinger under the seam, carefully undoing the paper and then unfolding the gold foil, revealing the rich, dark chocolate. I broke off a couple of squares and popped them into my mouth, savouring the taste as they melted on my tongue.

I waited for a couple of minutes and then took my pulse again. I crossed my fingers and hoped with all of my heart that I wouldn’t be sensitive to chocolate. To my relief, I wasn't - chocolate was OK!    The diet revealed I was sensitive to beet sugar, wheat and dairy products. It didn’t mean that I was allergic to the food, so it wouldn’t be a case of avoiding that food at all costs; it was purely to try and help alleviate my symptoms. 

  This sensitivity was such that I probably wouldn’t have noticed if my body had been healthy. My initial reaction to these findings was horror that I would no longer be able to have my favourite meal: a toasted cheese sandwich. Why couldn’t I have been sensitive to broccoli or spinach? I wouldn’t mind having to live without them – but no cheese sandwiches!?!



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