Going Full Circle: My Fight Against Guillain Barre Syndrome
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About this ebook
Guillain Barre syndrome is an horrific and very frightening illness, basically this illness takes away all of your bodily functions, to the level where you cannot do anything for yourself (even breathe), and you truly believe you might die, unfortunately some do. The one characteristic of Guillain Barre syndrome is that it in no way affects the function of your brain, to be fully aware of what is going on around you yet be unable to move or even speak is mind-glowingly awful. It was because of the retention of all his mental faculties that the author was able to chronicle all the suffering in accurate detail. This level of lucidity and accuracy makes this book a compelling read for anyone, even those without the illness, as a "human interest" tale of the biggest battle this author ever had to face. Of course this book will be of use to fellow sufferers and their families, but it is aimed at the wider audience as well. There is some biography at the start of the story to give you some idea of the authors background, which saw him as a serving soldier in the Armed Forces. Nothing has been left out this story, however unpalatable it may be, from the rapid decline, the loss of all of bodily functions, and eventually the need for life-support systems. The story encompasses all of the highs and lows, the raw emotions, and personal thoughts of this illness, and there are many. The lighter side of the story comes later in the book, dealing with the immense battle it took to regain all the physical functions, which people take for granted, like breathing, talking, eating, drinking and having to learn to walk all over again at forty years of age.
Phillip Taylor
Phillip Taylor lives by himself in a small coastal village in North Yorkshire, with his two cats, having been previously married for sixteen years, but with no children-his marriage being a casualty of his illness, like many sufferers of Guillain Barre syndrome. Before his illness he was a support-worker looking after young adults with learning difficulties, prior to this he was in the British Army as a Royal Engineer for eleven years. He now occupies his time socialising, and in quieter moments doing carpentry, writing other books, and is hoping to return to full-time work in the future.
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Going Full Circle - Phillip Taylor
Copyright 2007 Phillip Taylor.
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the written prior permission of the author.
Note for Librarians: A cataloguing record for this book is available from Library and Archives Canada at www.collectionscanada.ca/amicus/index-e.html
ISBN: 978-1-4251-2540-0
ISBN: 978-1-4669-5824-1 (ebook)
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Contents
INTRODUCTION
CHAPTER ONE
CHAPTER TWO
CHAPTER THREE
CHAPTER FOUR
CHAPTER FIVE
CHAPTER SIX
CHAPTER SEVEN
CHAPTER EIGHT
CHAPTER NINE
CHAPTER TEN
CHAPTER ELEVEN
CHAPTER TWELVE
CHAPTER THIRTEEN
CHAPTER FOURTEEN
CHAPTER FIFTEEN
CHAPTER SIXTEEN
CHAPTER SEVENTEEN
CHAPTER EIGHTEEN
CHAPTER NINETEEN
CHAPTER TWENTY
CHAPTER TWENTY ONE
CHAPTER TWENTY TWO
CHAPTER TWENTY THREE
CHAPTER TWENTY FOUR
CHAPTER TWENTY FIVE
CHAPTER TWENTY SIX
CHAPTER TWENTY SEVEN
CHAPTER TWENTY EIGHT
CHAPTER TWENTY NINE
CHAPTER THIRTY
CHAPTER THIRTY ONE
ACKNOWLEDGEMENTS
POSTSCRIPT
I dedicate this book to my friend the late Bob Tempest~
You were one of a kind
INTRODUCTION
My name is Phillip Taylor and this is my story about being struck down by an illness known as Guillain Barre syndrome. Probably just like you, I had never heard of guillain Barre syndrome before I happened to contract it-most likely through an infection caused by Campylobacter bacteria in something I ate, it was just unfortunate, but it has changed my life immeasurably. My motives for writing this story aren’t for self promotion, as I am still a very private person-they are purely because it is an awful and very frightening affliction and I want to explain what typical sufferers have to go through. Although my care has been excellent I always had the feeling that quite a few of the people looking after me failed to appreciate just how terrifying and undignified an illness it is-and it is my desire with this book to redress the balance from a sufferers point of view.
What is guillain Barre syndrome? It’s unusual name comes from the two doctors guillain and Barre who studied it in the 1900s-before this time it was known as Landry’s Ascending Paralysis, first observed by doctor Jean Landry in 1859. Doctors guillain and Barre re-named this illness and recorded increased protein levels in spinal fluid, this is still one of the main methods of diagnosing the syndrome. guillain Barre syndrome is Acute ascending progressive neuropathy-it causes muscle weakness, loss of sensations and movement and in it’s ultimate form respiratory failure, but a whole catalogue of other problems present also, as you read my story I will attempt to explain all of the various problems that I encountered with this illness. guillain Barre syndrome is basically when your own immune system goes into overdrive and creates vicious antibodies which mistakenly attack your peripheral nervous system and the Myelin sheaf which covers the nerves is stripped away, damaging the nerves underneath.
I have quoted a few facts and figures below to give you an idea of the statistics of guillain Barre syndrome.
-1500 cases per year in UK
- Most common cause of acute neuromuscular paralysis
- An equal opportunities condition
- 5-10% of patients die-from respiratory failure, cardiac arrhythmias, pulmonary embolism
- 25% of patients need ventilation-typical time on ITU is 6 weeks
- 10% are left with significant disability after 1 year-resulting from axonal damage
All is not lost though as with good nursing, a lot of luck-and a will to not give in to the various problems that this illness throws up-you can beat Guillain barre syndrome, but you have got an immense battle on your hands to do it…
CHAPTER ONE
MY EARLY YEARS
I finished my education at Hodge Hill Comprehensive school in Birmingham in June 1983, after I had completed my examinations. I was never particularly gifted in an academic sense and I was happy enough with a few 0-Levels and some CSE grades for the time being, I didn’t really need anything else to launch myself into the adult world. I considered that I had spent more than enough time learning and had no desire to go to college, I wanted to get out and get a proper job
. I was very fortunate in landing a place as an engineering apprentice at a large vehicle transmission plant near to my home. Like many young people at the time I was going into the enormous Midlands-based business of manufacturing cars and trucks-things are very different now-we don’t make any large-volume cars that are British any more.
Although I worked very hard (and for the first time in my life did all my home work, without being badgered for it!), it slowly began to dawn on me that even if I completed my apprenticeship I would just end up mindlessly feeding a machine all day. I thought that this was a waste of skills and decided that in the long-run I would be better off trying something else instead. I began in earnest looking for a change of career route, one that would enable me to work outside, and hopefully with a little less monotony.
I decided to do something reckless (well, it felt quite reckless at the time!),I went along to the Army careers office to see what, if anything, they had to offer me. How things have changed in a little over twenty years-I clearly remember that the Armed forces back in the Eighties was full-up-hardly any vacancies
,this was not strictly true, it was more of a product of media sensationalism
. The fact of the matter was that if you had in you what they were looking for, then there was a job for you within the British Army
- picture this with today’s situation where wild horses
won’t drag people through the door. I can’t say that I blame people though, today’s Army is an absolute joke-due to endless budget cuts. We are now so depleted and over-stretched that If ever we had another threat like the Falklands again (with no NATO backing)we would be in dire straits.
I did the numerous tests and did well enough to have virtually my pick of any of the army regiments that I wanted. My step-dad had told me not to even think about volunteering to go in the Infantry, or the Royal Military Police (because I wasn’t enough of a bastard, as he put it!). There really was only one choice for me-the Royal Engineers, this made me very proud-and I carry this pride with me to this present day. Every British soldier has reason to be proud of what he, or she is-but there are soldiers
- and then there are Royal Engineers, the real crack
troops of the Army, first on to the battlefield and quite often the last off it! My corps. is very superior about it’s attitude and to us if you aren’t a Sapper
then seemingly you are an inferior soldier-at least in an intellectual sense, if nothing else (well to us anyway). There is nothing wrong in this way of thinking-it is just healthy rivalry
- and this competitive spirit exists throughout the forces-it is what keeps a sense of pride in the various regiments and this is very important. If you remember back to the Falklands conflict in 1982-there was a race
between the Paras and the Royal Marines to see who could get to Port Stanley first, this is the rivalry
that I am talking about in it’s ultimate incarnation. They were both vastly out-numbered by the well dug-in Argentine soldiers, but they were merely another obstacle towards their ultimate goal, they were chomping at the bit
which is how they managed to tab
sixty-five miles over awful terrain in record time and fight a battle on the way, the Argies
were purely incidental to the equation, what mattered to them was who put the Union Jack up first, now that is a competitive spirit!
When I joined the Army in January 1984, I was one of the youngest ever adult recruits at barely seventeen years of age. At first I found the occasional violence and harsh discipline of basic training very hard to take. I very nearly didn’t bother to finish my training, as I began to tire of being constantly treated without any respect or an ounce of humanity at all. I didn’t realise the reason why, or appreciate it at the time though, I just know that I hated it enough to want to go back to my civilian life again. There was of course a very good reason why we were treated in this way. It used to piss me off so badly (and presumably everyone else) that I wanted to pass training, just to piss them back off In return-this reverse psychology
works very well! Unfortunately this system has now all but collapsed, due to the now infamous political correctness
-Army NCOs are now not even allowed to swear at a recruit, let alone belt
one. The result of all this softness has had a fairly predictable result-and this is purely a personal view point-it produces stroppy, ill-disciplined, know-it-all little bastards, who aren’t worthy of the uniform (of course I don’t mean everyone),just a large majority of our newer soldiers, god help us.
As an ex-NCO myself I speak from experience, young lads now join up who previously had a drug habit, and they don’t think the Army is reason enough to let their old habits die, this is why you see Army drug-bust stories in the national press all the time-the problem really is as much of a scourge of modern life in as well as out of the forces. I hate drugs and really try to distance myself from them but in the Army you are relying on some of these drug addicts
to watch your back
-whilst carrying automatic high-powered machine guns. Hang on a moment whilst I get off my soapbox!
I never expected to serve in the forces for as long as I did, it just turned out that way, I feel that in that time I did my bit for Queen and country, and more than once I have been in dangerous situations, where my life was on the line and sometimes I wondered if I would be coming home alive from some jobs. Many soldiers have similar thoughts and we all learn that it goes with the job
-though I think we should get paid more for our troubles!
Whilst serving with 38 engineer squadron in Berlin I became a bit a bored with building medium girder bridges and lying on my stomach all night in wet fields, looking for dummy mines. Against more advice my step-dad had given me (like NOT volunteering for Northern Ireland)I fancied a change of scenery and for a chance to work with animals-which I adore. I saw an opportunity to work as a dog handler in the Province and jumped at it. My step-dad had died suddenly the previous year, if he had still been alive I wouldn’t have dared to do it.
I really enjoyed serving in the Province as to me it was real soldiering
what I joined up for. The sense of danger/excitement was an intoxicating mixture. As firstly a guard dog, then a specialist tracker handler, I got to see some of the action whilst swanning around in helicopters (and the pay was good, for once!). Like a lot of soldiers who work for long periods on operational tours, it does eventually start to take a toll on your mental state. Whilst on leave, back home in England, my mother said I was starting to lose it
-and that I really must see someone about it-charming
, I thought, but she was right (she was rarely wrong about anything in her life).
Being on almost constant five minutes notice to move
had made me very jumpy and hyperactive, I found difficulty sleeping at night (this was when all my demons
would come out to haunt me)-all the silly risks that I sometimes took. The adrenaline which used to kick in when I was on dodgy
jobs used to blind me sometimes to the dangers inherent in the job of tracking terrorists across the countryside and possibly stumbling into a booby-trap. Booby-trapping was a classic IRA tactic that had been responsible for the deaths of many people-both military and civilian, it is a relatively risk-free way to kill people. The IRA, for all their bravado, never did have the balls to take on British soldiers face-to-face, in a fire fight, in case they got a bullet themselves!
My decision to decide to go back to a safer way of life came about quite literally by accident. I was out on a job in Newry, proper bandit country
, and as ever I was impatient to crack on with a task before it went completely dark, I didn’t notice a homemade
hand grenade that I had just sent across the pavement with my clumsy feet. I was lucky, it was just one out of a total of six that had been thrown off a high embankment at a passing Army foot patrol, not ONE of them exploded-I have never been so grateful that the quality-control Of IRA armament and weaponry was so crap!
I managed to secure a quieter, and safer, job back in England so that I could sort my head out, though I never did actually see anybody
(that’s for wimps), I always sort my own troubles out. It was down near London that I was to meet Linda, the woman who I would be married to for nearly sixteen years. Linda was a cracking wife who seemed to relish the Army way of life, we would go on to have a lot of adventures in the time we were together (which in the Army wasn’t very much sometimes). I left my southern posting in 1992 for a posting with an engineer regiment again in Ripon, North Yorkshire.
I would have to do one more operational tour, in Bosnia, in 1993. By this time I had started to cool a little towards the Army, I had grown rather disillusioned by the politics that under-pinned some of the decision making. This was the second time that I had been selected
by the powers that be to go to a war-zone (the first time was Gulf war one
). Each time I was absolutely certain that it was for the same reason-namely that on each occasion I was the NCO who didn’t have any kids, (it isn’t good PR when a soldier is killed in action and has children). Don’t get me wrong here,