M.E. and me. Chronic Fatigue: My Recovery After 10 Years
By Stuart Aken
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About this ebook
ME/CFS: Stuart Aken had the condition for ten years. Now recovered, he records here his account of that time. In his short book, you'll find information, advice, and a very personal story of what it is to suffer the condition and to recover from it. You'll also discover a message of hope for all concerned. So, whether you're a sufferer, carer, friend, relative or colleague of someone struck down with the condition, you'll find everything you need to help you understand the reality of this much misunderstood ailment. And, by buying this book, you'll be helping a charity aimed at providing practical help for all involved with ME/CFS.
Stuart Aken
Writing since I could hold a pencil, I've always been fascinated by words and their power to entertain, transform, educate, illuminate, and influence. Stories are fundamental to human beings; they form an essential part of our psyche. It's an honour to be privileged to tell my own versions of tales that have abounded for millennia.Born in Hull, England, in 1948, I had my first writing published as illustrated articles for the British photographic press at age 19. I stilll take photographs in a semi-professional capacity. I have 8 published novels, a science fiction novella, a self-help guide to ME/CFS, and several anthologies. My fiction started with a radio play, Hitch Hiker, broadcast by BBC Radio 4 in the 1970s. My short stories have been published and have been prizewinners in competitions.I'm married to a charming, intelligent and lovely lady who proof-reads my work. We have a daughter who, at the time of writing, is working in Australia.
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M.E. and me. Chronic Fatigue - Stuart Aken
M.E. and Me
Chronic Fatigue: My Recovery After 10 Years
Copyright 2013 Stuart Aken
Published by Stuart Aken at Smashwords
Smashwords Edition License Notes
This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your enjoyment only, then please return to Smashwords.com or your favorite retailer and purchase your own copy. Thank you for respecting the hard work of this author.
Table of Contents
Acknowledgements
Dedication
What This Book is For
And How Long Have You Been Feeling Like This?
But, What is it Called, this Condition?
Accepting Limitations
Varying Degrees of Suffering
Retrospective Discoveries
Waking up Dead
Sex Rears, or Fails to Rear, its Head
Supporters Are Vital
A Wife’s Tale
A Daughter’s Tale
I’m Feeling Anxious About…
Pacing for Recovery
Dealing with Decriers
Stresses and Strains
False Recoveries
Creating an Escape
Coming Alive Again
Appendix
About the Author
Other Books by Stuart Aken
Connect with Stuart Aken
Acknowledgements
The writing of any book involves input from more than the author. Although this work is essentially mine, as the writer, I owe thanks to the various organisations I have quoted and listed as resources at the end of this book. I also wish to thank Madeleine, Linda Acaster and Dr Penny Grubb who acted as my beta readers and pointed out the many ways in which the text could be improved. I thank my daughter, Kate, for her contribution and for her loving support during my illness. I thank my wife, Valerie, for her unstinting support and care during the illness, her contribution to and her suggestions for improvement of the text of this book, and her unconditional love. Lastly, I thank Action For M.E., which provided me with an anchor at a time when I most needed it.
Dedication
This book is dedicated to Action For ME, a charitable organisation that strives to help people with ME/CFS and those who care for them. Half the proceeds from this work will be donated to this organisation in recognition of their vital work on behalf of sufferers and their carers.
What This Book is For
There have been many books written about Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS). Some have been memoirs, some are guides, some are medical treatises, some are self-pitying diatribes and some are inspiring works of hope and courage.
This book is presented to you as an honest account coupled with advice, suggestions and a message of hope. It is intended to help unbelievers overcome their prejudice and fear and understand the reality. It is meant to inform and advise those who help victims, so that they might do that sterling work more easily and more thoroughly. It is mostly aimed at helping sufferers from this pernicious condition to cope with the many symptoms and effects they encounter.
Most importantly, it is intended as a message of hope for all involved: if I can recover after 10 years with the condition, then it is possible that all sufferers can find a way to become whole again.
I wish you well, in every sense of that word.
And How Long Have You Been Feeling Like This?
The question came with a world-weariness that suggested the doctor had experience of similar cases, which makes me wonder why he wasn’t more sympathetic or knowledgeable. At the time, February 2003, medical attitudes to ME/CFS were even more varied, and frequently more insensitive, than they are today. It was a time when the profession had largely decided to entrust the fate of sufferers to the psychiatric horde who seemed happy to declare the condition resulted from a form of depression. Even so early in my diagnosis (or, more accurately, non-diagnosis) I knew that depression might well be one result of an inability to be as active as I had always been.
The eventual outcome of this initial ‘investigation’ by one of the GPs at the surgery I attended, was an appointment with an endocrinologist. This specialist was charged with discovering whether I had any of several illnesses that might explain my fatigue.
The visit to the doctor had come about after a prolonged spell of general illness, which had begun with a virus infection in November 2002. I’d gone down with a flu-like complaint with the added inconvenience that it affected my balance. The sickness had persisted but I’d returned to my job after a week’s absence, hoping it would go away.
It didn’t.
By Christmas, I was growing more unwell and feeling constantly tired. Early in the New Year, I found it an effort to spend a whole day at work, even though the work was office-based and not at all manually tasking.
The February visit followed a few weeks during which I’d been unable to be at my place of employment for more than a day or two at a time. My boss, a patient and understanding type, had reluctantly hinted there could be disciplinary action if I didn’t attend more regularly. At the time, I had no idea what might be ailing me. I continued to battle into work on every day I was actually able to get out of bed and drive the twelve miles to the office.
I struggled on intermittently until April, when I was seen by the specialist. Several rather peculiar tests followed. One involved me remaining as still as possible for a given period but not allowing myself to fall asleep. There were others. In the end, the battery of checks showed I wasn’t suffering from any of the identifiable conditions the tests were designed to detect. The endocrinologist informed me the result ruled out the specific illnesses they had tested for and was therefore what he termed a ‘non-diagnosis’. I was suffering from one of possibly half a dozen conditions that, for the sake of convenience, had been bundled together and labelled ‘ME/CFS’.
He told me I would recover within twelve months. He advised me to do what I was able to but that I should not, under any circumstances, exert myself. I must take life more slowly. And that was it. No follow-up appointment or counselling, not even an introduction to help outside the medical profession. I appeared I was on my own.
I smiled ruefully at the