7,50 €
Mehr erfahren.
- Herausgeber: Cherry Red Books
- Kategorie: Ratgeber
- Sprache: Englisch
- Veröffentlichungsjahr: 2015
Alex Howard was a normal, happy teenager until just before his 16th birthday, when he began to experience strange, unexplained physical symptoms. In time he was diagnosed with ME, or Chronic Fatigue Syndrome, a severe illness that the medical profession has yet to offer an explanation or cure for. After spending two years bedbound and developing clinical depression, Alex committed himself to finding a cure and returning himself to health and happiness, eventually finding the key to his illness and, in creating the changes he was striving towards, realising his life had been irrevocably transformed for the better. In this updated third edition, Alex shares his ongoing journey since the first edition of WHY ME? was published, including setting up The Optimum Health Clinic, an award winning charity specialising in treating ME/CFS which has treated thousands of patients in over thirty-five countries around the world. A detailed resource section includes transcripts of interviews with several experts discussing the limitations of orthodox medicine in treating M.E. and the clinic's model of the seven subgroups and three stages of the illness, along with easy to understand explanations of their suggested treatments for M.E. and tips that M.E. sufferers can follow. 'WHY ME?' is an invaluable account of Alex's journey and source of guidance for anyone struggling with their health, facing a challenge that feels insurmountable or searching for deeper meaning in their life. As well as providing a wealth of information about healing mind, body and soul, 'WHY ME?' is an inspiring story of love, triumph over adversity and the ability within us all to create change in our lives.
Das E-Book können Sie in Legimi-Apps oder einer beliebigen App lesen, die das folgende Format unterstützen:
Ähnliche
WHY ME?
My Journey from M.E. to Health and Happiness
Alex Howard
Dedicated to all those I have been fortunate enough to work with over the years.
Your desire to create change in the face of often seemingly insurmountable adversity inspires me every day.
Alex will be donating all royalties from this edition of “WHY ME?” to registered charity The Optimum Health Clinic Foundation. The Optimum Health Clinic was founded by Alex in 2004, with a commitment to make integrative medicine treatment for ME/CFS available to all. The Optimum Health Clinic is currently working on a randomised controlled trial as a key step towards one day hopefully government funding being available for treatment.
Registered Charity number 1131664
Acknowledgements
Sitting here thinking of those who have impacted on my life, I am filled with the deepest gratitude. Of all those who assisted in my journey, there is one person without whom this book would never have been written: my uncle Iain McNay. The impact he has had on my life will be obvious to everyone who shares my journey.
There have been many teachers along my path who have impacted on my journey in some way, and I’ve recommended books at the end of those whose work I encourage you to explore.
Those who have helped in proof reading, and assisted me in clarifying my ideas in writing, are Catherine Buchan, Diane Fenton, Ashley Meyer, Penny Faith, Gabrielle Wellington-Spurr and Alison Manos. For the second and third editions, I’d also like to thank Anna Duschinsky, Val Duschinsky, Anna King and Richard Anderson for their suggestions and editing.
I would also like to express a public thank you to The Optimum Health Clinic team. Your tireless work and commitment has made so many things possible. It is because of your determination, integrity and endless dedication that we’ve been able to help so many people in so many difficult situations. May our shared vision continue to blossom and flourish as we continue to spread the word that recovery really is possible.
Finally, to my wife and beloved, Tania and our two beautiful daughters Marli and Ariella, you make every day a blessing and those years of suffering worth it in every way.
FOREWORD
By Shirley Conran OBE
It is said that everyone has a book in them. This is not true: some people don’t have even a paragraph. However, Alex Howard is a walking library: first there’s the story of Man battling against Adversity, then Man on a Quest, followed by a Medical Detective and finally Love Story with Happy Ending when two people part.
I always want to know what happened after the end of a book, particularly so when, some years ago, I read Alex Howard’s WHY ME? because Alex and I have something in common: M.E.
Forty years ago, when I was Woman’s Editor of the Daily Mail, I went into hospital with viral pneumonia and came out with M.E., to face a wall of medical disbelief that I was ill. My GP sent me to three different “experts”; quickly, I realised that they were psychiatrists, quickly I realised that they were wrong in their diagnoses: I am not workshy, I do not need to draw attention to myself and I am not a hypochondriac. Quickly I realised that the medical profession was saying, “If we cannot find anything physically wrong with you, then you must be mad, to some degree.” When I realised that it was the medical profession that was wrong, I decided to avoid their Kafkaesque attitudes and deal by myself with the symptoms of my illness.
However, when every medical expert is telling you that black is white, when your family is worried about your odd behaviour, and when you lose your job and your income, you probably will need a psychiatrist. Eventually I met one, who said, “I’m going to assume that everything you say is true”. He understood my contempt for psychiatrists and from then on, he helped me deal with my symptoms. Once he scribbled a note to my new GP. “What have you told him?” I snapped. He took the note out of the envelope and handed it to me. It read, “Dear Colleague, contrary to what you may at first believe, this patient tells the truth. Yours sincerely, Jonathan Gould”. So he meant what he had said, when first we met.
One day my mother said, “You’ve changed for the better, since you met that Dr Gould”. Certainly, I had stopped being an appeasing, unctuous, eyelash-batting, role-playing little woman. Now, I didn’t care what people thought of me, but what I thought of those people; now I stood up for my own opinions; I became friendly with my body; I learned to be my true self. I grew up.
Eventually, I no longer had money problems: I could afford to have M.E. because I made a fortune in property and another fortune when I became an international author. I travelled round the world eight times, seven of those at the expense of my publishers. I was able to financially help my children when they needed it.
One day I realised that the silver lining of M.E. is that it pushes you onto your own resources; it forces you to think for yourself and to create your own disciplines and determination, because the only person that can understand your condition and improve it …is YOU.
Dr Gould died and for the next twenty years I spent a fortune trying everything that claimed to cure or help M.E. None of it worked.
Then I read a book and immediately identified with the young author, who had been bedridden for two years as a teenager. Alex Howard eventually earned a first class degree in psychology and Swansea University should be proud of him.
“WHY ME?” was a gangly, exuberant book and the dynamism and determination of the author shone beyond the grammatical errors (I’m still an editor!). Three years ago, I actually met Alex. Meeting someone with M.E, forced to lead a similar life to yours, is like meeting someone who comes from your home town and speaks your language, after you have spent years in a foreign land. Because Alex had dealt so successfully with his illness - and was clearly helping others to do so - I decided to ask for his help. So Alex became my mentor. We talk for an hour every fortnight. My health and my well being have improved considerably.
Often when a new edition of a book is published, it adds nothing much of value. But, the added chapters of WHY ME? kept me up beyond midnight, and I used the highlighter so much that some pages are almost yellow.
Alex takes the reader along his journey through adversity to success; he does not hesitate to tell of his stupid behaviour: he succumbed to the temptation of overworking and he suffered the consequences. He struggled financially and emotionally to reach his well-deserved success, both personally and with his clinic The Optimum Health Clinic.
In this new edition, the autobiographical sequence - what Alex did next - is followed by three transcripts of TV interviews with the three directors of The Optimum Health Clinic. And - to use two of Alex’s favourite adjectives - these chapters are incredibly amazing.
I shall re-read them tonight, and often afterwards, because - to my surprise - just reading these added chapters has taken me a step further in my own M.E. quest for health. I nearly wrote “battle with M.E.”, but I no longer regard M.E. as my enemy. I look upon my symptoms as messages from my body that I reached burnout in the past because of my determined, stressful, body-ignoring behaviour. I now suspect that my M.E. is partly the result of living a hardworking, exciting, adrenal-filled life in a way that my body could no longer tolerate, but that I refused to face.
For three years, I have argued with Alex that complete recovery in M.E. is not possible.
Now, I am not so sure.
Having read this new edition of “WHY ME?” I have a new courage, a new willingness to explore where I have - until now - refused to go. I have a new optimism based on facts that I know are scientifically proven, not some mindless, new, fix-fast “discipline”. My determination has been renewed. I feel that I have just started to take the next step towards… dare I say it…recovery. I wish you the same good fortune.
Shirley Conran OBE
London, August 2009
Introduction To Third Edition
It is now over eleven years since I finished working on the first edition of this book. One third of my life. In that time so much has happened. The seven-year period you are about to read about in many ways feels like a distant memory. On one hand it is hard for me to see the world through the eyes of that terrified boy who woke up one morning to face his world falling apart. On the other hand, in my work with The Optimum Health Clinic I am reminded almost daily of the fear, loneliness and pain we experience when battling with an illness like ME/CFS. For me, the personal suffering is over, but for you, the journey may just be beginning. If so, I hope in some way this book can be a companion and guide for you.
Reading back through some of these pages with the benefit of the last eleven years is an odd experience. I hear a younger voice to the one I know of myself now. A voice that is at times perhaps a little righteous, and at others utterly indignant of those who I felt should have helped me and didn’t. With the perspectives that come from over a decade working as a professional in the field, I feel a little more considered in my opinions, yet I also realise my younger voice is as important now as it was then.
Yes, there are many complex reasons why conventionally available treatments for ME/CFS are decades behind those being pioneered in clinics such as The Optimum Health Clinic. There are many well-intentioned people simply working with fundamentally flawed ideas, but things are slowly changing. We can seek to understand, we can be compassionate and we can cultivate patience.
But, for the sixteen year old me that woke up to a life destroyed, and the eighteen year old me that considered taking his life, I will not soften my words or attempt to be more politically correct. When I found my path out of ME/CFS, I wanted to scream it from the rooftops and shove it down the throats of all those who had failed in their duty to help. And, I had every right to feel that way.
Treatment of ME/CFS in this country is a scandal - hundreds of thousands of people in the UK alone suffer from an illness that has clear causes, effective treatments, and identifiable biomarkers. They’re generally either told it is all in their heads and there is nothing wrong with them, or that they’re seriously chronically ill and they will never recover. This is not good enough - in my day job it is appropriate I choose my words carefully when speaking publicly, but here I will not censor myself. People with ME/CFS deserve better. You deserve better. Things need to change, and it can start with you and I.
Here is my story. One day I hope to hear yours.
Alex Howard
London, July 2014
Introduction
These are mediocre times. People are starting to lose hope. It’s hard for many to believe there are extraordinary things inside themselves and others. I hope you can keep an open mind.
Unbreakable
As a child I always loved stories of great adventure and discovery. Films such as Star Wars, Back to the Future and The Karate Kid consistently held a special place in my heart. I often dreamed about experiencing my own quest and story of dramatic transformation. Along the way I would meet wise teachers who would teach me great things, towards the end I would fall in love, and there would then be a dramatic climax where I did great things. Yet, by the age of fifteen years old I had all but given up hope of my quest, telling myself that such adventures only happened to other people. I was wrong. My own quest did happen, but it started in the least likely of places and the most surprising of ways
One day I woke up and something in me was different. I was very seriously ill, but no one had any idea what I was actually ill with. In time it became apparent that I had developed one of the most poorly misunderstood chronic illnesses known in Western society, an illness for which according to the world’s “experts” there is no cure. “Why have I got ME? Why is this happening to me?” I endlessly questioned as I spent several years virtually bed-bound and sinking into a deeper and deeper clinical depression. Then, one day someone planted a seed of belief in my mind that just perhaps I did have all I needed to transform my life and my world, regardless of what traditional thinking suggested. Feeling like I had no other choice, I gave every ounce of my desperate existence to finding a cure for my ME, along with my clinical depression and major anxiety.
When I consider my world these days I still ask, “Why me?” but I ask from a very different place. Why was I able to change something that is apparently unchangeable? Why do I now have a quality of life that seven years ago I could only have dreamed of being possible? You hold the answers to these questions in your hands. I pray that as you let them sink into your heart they will be more than just intellectual concepts. Knowledge is nice. Action creates change.
In love and warmth,
Alex Howard,
Contents
CHAPTER 1: A NIGHT OF CELEBRATION (SUMMER 1996)
Your vision will only become clear when you look inside of your own heart. Who looks outside, dreams. Who looks inside, awakens.
Carl Jung
It was the perfect summer evening. The hot sun of the day was slowly draining away and leaving a gentle warmth. My girlfriend Emily and I were on our way to some friends after spending a relaxing day together enjoying the growing anticipation of three months of freedom. We were both nearing the end of our GCSE’s and only had a couple of exams left. There was a magical feeling of passion between us. It was like one plus one equalled ten when we were together. Emily had shoulder length blonde hair and a good figure; I was hoping that in the near future I was going to be exposed to more of her beauty.
I had fancied Emily throughout most of secondary school, but by the last year I had given up hope. I had been genuinely surprised when she had asked me out in the last few weeks of term. Much to my mum and stepfather’s frustration, we spoke on the telephone every night, despite usually having seen each other in the day. The telephone bills were a stretch for them to pay, but I didn’t care; I felt as if I was falling in love for the first time.
We got a lift from Emily’s parents over to her cousin’s beautiful house in the Surrey countryside. It had five or six bedrooms and acres of land, very different to where I lived. Our friends were already there and soon we were lost in conversation, me with the guys and Emily with the girls. Apart from hoping to make use of the empty house with Emily and beat my mates in the race to lose our virginity, I was also particularly excited about talking to Tom, Dale and Nick about the band we were starting on Friday.
As the four of us sat round a table swigging our cans of beer, which we had stolen from our parents, we got planning.
“We can use my basement to jam,” offered Nick, our newly discovered drummer, as he opened another can of beer.
“Cool man,” said Tom, our singer, in his slow, deep voice. “I’ve got a few new riffs we can jam on.” Tom was one of the more trendy guys at school, and I was loving the fact that I was now associated with such people.
“I’m gonna borrow a bass guitar from a guy my dad knows,” added Dale, one of my closest friends, as he crushed an empty can in his hand.
“Wicked,” I said, trying to sound as cool as I could. “I have a few new tunes as well, I’ve also worked out the guitar solo to that Ash song ‘Uncle Pat.’ Sounds well good.”
“No way,” said Tom, tossing his hair out of his eyes, “That’s a bitching solo, I can’t wait to hear it.”
And so we continued together, plotting our path to international stardom. After a while Emily caught my eye and I left the guys to spend some time with her.
As the golden sun continued to go down over the rolling Surrey hills, Emily and I headed for a walk alone together in the woods. While we strolled along side by side, hand in hand, my mind drifted back to the events of the recent months. I had scored reasonable grades in my mock exams the previous Christmas, but there were very high expectations in my family. My two elder cousins and sister, Georgina, had set the standard by achieving twenty-seven A’s and only three B’s between them. Such expectations led to a fair amount of pressure on me. Of course I was assured that it was the kind of person I was that mattered. However, children are sensitive to their environment, and years of torment from both family and peers told me different.
The coming months were to see some exciting changes in my life. It was really starting to feel like the traumas of the past were over and I could finally forget about the horrors that had made up my family life. The attempted suicides, the violence, the abuse and the alcoholism, perhaps they were all finally done with? I wanted to look forward, not back, for I had always believed that was where my happiness lay.
Emily and I carried on walking and reached a rubber tyre hanging from an old oak tree. We took it in turns to sit on the tyre and gently push each other. As I caught the swing and pushed her again, we caught each other’s eye.
“You seem a bit quiet,” Emily said to me inquisitively, “Are you okay?”
“Yeah I’m fine,” I replied, “I’m just glad to be getting away from Ashcombe. You know what I went through at that school. I can’t wait to start the band on Friday. I really think we’re gonna rock.”
Soon we got bored with the swing and sat down in the grass nearby. I leant forward and kissed Emily’s neck, working up towards her mouth. Putting my arms around her I gently stroked her back, not daring to let my hands rove where I really wanted them to. It was a strange situation: I knew what I wanted, but I had such mixed feelings about going for it. What if Emily wasn’t ready? What if I ruined what we had? Perhaps even more frightening, what if she actually did want to as well? Of course talking about the idea was out of the question. Such a conversation was not in our dialogue.
After some more kissing and cuddling, and my guessing that the issue had been avoided for another day, we made our way back to the house and rejoined the celebrations. I was starting to feel less carefree. I was going to have to go home soon. My mum and stepfather didn’t trust me enough to let me stay the night. This meant I was going to have to leave the party just as it started to reach its climax. This annoyed me, as did most things to do with my family.
As I waited for the embarrassment of being picked up at 11:00, Emily made my heart stop.
“I’m so drunk I would probably sleep with you,” she whispered in my ear.
Wow, I thought to myself, she does want it too! My mind started to imagine one of my wildest dreams coming true: having sex with the girl I had fancied consistently for four years. At this point, I didn’t even care about the fact that I would be beating most of my friends to it. It was a precious moment. Even I knew it.
However, despite the fact that I was a rather intoxicated teenager with raging hormones, my conscience told me to be cautious. If Emily really was drunk, then maybe she might regret it the following morning? If she needed alcohol to be ready, did that not mean she needed more time? I knew what I wanted, but I also cared about her. Surely one more night of chastity was worth it, just to make sure, I reasoned. After all, the summer was mine to do with as I pleased. There would be plenty of other chances.
“I have to go soon,” was the best excuse I could come up with. The light was poor and I never saw the reaction in Emily’s face as a group of friends joined us. The beauty of the moment disappeared as fast as it had emerged. One thing was for sure though: my life was going from good to great.
While I waited for my mum and stepfather to arrive, my friends and I sat around chatting about the last four years of school and our plans for the future. Most people, like Emily, were just going to start a course that interested them and see where they ended up. Tom, Dale and Nick were all in this category, they thought playing music was “cool and everything,” but they didn’t really believe we could make it in the music industry. Dale probably came closest to sharing my drive and ambition, but even for him success was more of a nice idea than a necessity. It was different for me. I needed to do something special with my life. I wanted more and I wasn’t scared to ask for it. I hated the world I had grown up in and I was willing to do whatever it took to avoid that kind of life.
As I sat in the car with my mum and stepfather on the way home half an hour later, I made my frustration at having to leave early known by ignoring them. This was a progression from mumbling my words and slouching my shoulders when I was only mildly annoyed with them. When we arrived home, I went straight to my room and rolled out my dumbbells from under my bed. I used my angst at my family to help me lift my weights in my intoxicated state. I reasoned that to be a successful musician I had to look the part. Despite the fact that I had been lifting weights for several months with no obvious difference, I still kept at it every day without fail.
Getting into bed that night I was the happiest I could remember being. Two of the most exciting things that I could imagine were on my mind: Emily and I were going to have sex, and the guys and I were on our way to becoming famous. With the summer holidays also just about to start, I couldn’t wait to get started. For the first time in my life I really felt like my dreams were coming true.
Turning over and falling asleep, my mind was overflowing with plans for the future.
That was to be my last night of health for years.
CHAPTER 2: THE MORNING AFTER
Waking up sometimes needs a very loud alarm clock, especially if we don’t know we are sleeping.
The estate where I grew up was several miles from the nearest town, Dorking. The bus service was quite infrequent, and so the easiest way to get there was to have a lift from Mum on her way to work. This morning I had a hairdresser’s appointment and so Mum woke me up at 8:00, ready to leave with her at 9:00. After the hairdressers, I had to go and clean out one of the sheds at my grandparents’ house in the middle of Dorking. I didn’t feel right. I couldn’t put my finger on it. It wasn’t like a cold, I didn’t ache, and I didn’t feel sick. I somehow just didn’t feel right. I wondered if maybe I had a hangover. It seemed like the only explanation, because I felt a bit like I was drunk, although it wasn’t quite the same. Whatever was wrong though, I just tried to ignore it. I had to get to the hairdressers for my appointment; I wasn’t willing to hang around on my holidays.
Having gone through my morning routine of having a shower, getting dressed, eating breakfast and cleaning my teeth, I managed to get to the salon. As I sat in the chair I explained to my hairdresser, Tony, that the same short back and sides as last time would be great. Once he had started cutting, the conversation soon graduated towards small talk. We discussed family, exams, the weather, and so on. I felt like hell. My heartbeat was starting to feel like an accelerating train. Even worse, with every faster beat my temperature was rising. It seemed like it would only be a matter of time before I reached breaking point, though I had no idea what that was. As my anxiety started to rise in union with my heart rate and temperature, I tried to focus on what was happening around me, attempting to take my mind off my body and the storm I could feel brewing inside. It wasn’t working.
Tony had been cutting my hair since I was a baby. It didn’t feel like that long since I had been coming for haircuts without my grandmother accompanying me. Only a few months’ ago I had had to work hard to convince Tony to give me extremely short hair, so concerned was he about the wrath of my family. Of course that only made me more determined to have my hair cut shorter on future occasions.
The salon had the unforgettable smell of cut hair and hairspray, and as it was the beginning of summer, it was quite busy. As I looked at the locks of hair falling to the floor beside me, I wondered what would happen to them. Would all those months of growth just be thrown away?
The cutting continued. I really didn’t feel right. My mind started telling me that I should say something, but what? I knew that explaining my situation would be very embarrassing, and could also land me in a fair amount of trouble when I got home. Drinking under age would not have been a problem, for I had been one of the few of my friends that didn’t have to steal alcohol. my family was more than comfortable with drinking. However, letting this be known in public would be unacceptable.
I reasoned that it was too late now to do anything anyway. Tony had already taken large chunks of hair off the back of my head with the clippers. I could hardly go home with massive patches of hair missing. Maybe, I would be okay if I could just relax and not think about how I felt? Yes, that ought to work; you hear about how people get themselves into a panic and make things worse, I thought to myself. But I was a levelheaded person, and certainly had no history of panic attacks. Why would I start now? But why the hell couldn’t I focus on the mirror in front of me? My heart was now going into palpitations; I was going to have to say something. I began to pass out. What was happening to me? What was wrong?
“Could I, erm, have a glass of water,” I managed to mumble.
God, that sounded stupid, I attacked myself. Maybe it would help though; at least it would let Tony know that something was wrong.
“Sure, are you alright?” Tony asked, a slightly concerned expression on his face.
“Just feeling a bit dizzy,” I managed to add, trying to smile to reassure him.
Tony walked off to get me some water and I struggled to pull myself together. However, the longer I sat there, the more nauseous I felt. The more nauseous I felt, the more scared I became. Unable to even influence what was happening in my own body, I started to develop more and more of a sense of helpless. I so wanted to tell someone how I really felt. But what could they do anyway? I certainly didn’t want a scene. I decided that I would have to sit it out. If I fainted then at least I wouldn’t have to battle anymore. Until something like that happened it seemed easier to say nothing.
The next thing I saw was the inside of a blurry ambulance, with a panicking paramedic rushing around beside me searching for something. Then my consciousness drifted off again and I was aware of lying in a hospital bed unable to speak. Everything was swirling into a daze in the whirlpool that had become my mind. Nothing seemed real. I felt like I didn’t even exist. The only thing I knew was real was the fear that was burning inside.
Tony returned with a glass of water, and for a few seconds I remembered again that I was in the hairdressers. At least one of the assistants probably now knew there was something wrong, for they appeared to have been chatting in the next room. Maybe that was good, but maybe it also meant I was going to have to explain myself when I got home. That was hardly of much concern at the moment though. The only thing that really mattered right now was getting through the next ten minutes; getting my hair cut without falling apart. Then I could force myself home and get what was left of my head together.
Somehow, after being close to passing out another three or four times, I managed to survive the rest of the appointment giving relatively little away. Looking back, it seems obvious that I should have said something. After all, it was hardly my fault that I felt ill. But, at the time, that seemed impossible. Even my most basic senses of reasoning had left me. Hairdressing appointments were to haunt me for many years to come.
I decided to take a longer route to my grandparents’ house, which was really only five minutes away, in the hope that I might be able to walk off whatever was wrong with me. It didn’t work. However, it did help me to reduce some of the horrible tension I could feel inside. I wished that I didn’t have to go and help out, but I felt like I had no proper excuse. The only explanation I had so far was that I had a hangover. That would certainly not be good enough. I didn’t feel especially like resting anyway. I couldn’t conceive of anything that would change the way that I felt apart from time, and I wanted to keep as busy as I could in that time. The last thing I wanted was to be alone with the cauldron of fear that had become my mind. I was meeting Emily later that afternoon and so I tried as hard as I could to focus on that.
Once I arrived at my grandparents, I briefly said “hello” before getting to work in the shed. I just wanted to get it finished. I knew that the sooner it was done, the sooner I would be able to leave. I have little memory of the next few hours, just intermittent recollections of a spinning dark hut, dusty flowerpots, and dozens and dozens of insects. Apparently I did manage to clear out the shed, sort out the flowerpots, and also have lunch. I have absolutely no recollection of eating at all.
That afternoon I confessed to Emily how strange I felt. She, too, thought it unlikely that I had a hangover. Nonetheless, she agreed it might be a good idea to go for another walk and get some fresh air. We therefore walked a couple of miles together in the hills at the back of where she lived. It had little effect. Her comment of the previous night was apparently forgotten. Sex was hardly top of my priorities anymore anyway; I was far too concerned with my current struggle with my mind and body. I also doubted Emily would even remember what she had said. She herself had admitted she was quite drunk. I assumed I would be feeling fine again soon and another opportunity would present itself.
The next day was band practice and Tom, Dale, Nick and I spent the day living out our fantasies of being rockstars. We climbed on the drum kit while playing, screamed lyrics at the tops of our voices, and thrashed our guitars and bashed the drums as fast and as hard as we could. There was, of course, also the making of the obligatory demo tape to play to our friends. As far as we were concerned, we were the best band in the world and we couldn’t wait to prove it. First stop Nick’s basement; next stop Wembley Stadium.
However, despite the adrenaline of my passion, there were several times in the day when the dizziness rose past a level that I felt I could cope with and I had to sit down. My head just didn’t feel like it was properly attached to my shoulders. Every time I moved it seemed to want to fall off. As hard as I tried, I just couldn’t seem to pull myself together.
The next morning I still felt like there was something very wrong with my balance, but I was less anxious about how I felt. I continued to assume that I would start to feel better soon. Resting didn’t seem to make any difference, and so I decided that the best strategy would be to take it relatively easy, but for the most part try and get on with life as best I could.
My best friend, James, and I arranged to play golf together. James was, like me, around six feet tall and well built. He had shoulder length black hair and dark eyes. The two of us had spent most of the last year racing to grow our hair, as was the fashion amongst our friends. However, mine had just curled upwards and so I had eventually given up and had a French crop. James had been unable to make the party, as his final exam had been the day after. “Lucky git,” I had thought to myself at the time. I was now rather pleased that I had more time until my last two. It would have been a nightmare to take an exam feeling the way I was.
James and I had been to different primary schools, but ever since discovering in our first year at secondary school that we both played golf we had spent almost every weekend together at the local golf club. It was a strange environment for both of us as we were both from families with limited income. The only reason we could afford the sport was that, in an attempt to encourage young talent, membership for juniors where we played was virtually free. To mix with the upper realms of society made us feel like we were something special and we loved it. We were well known at the club for playing whatever the weather. I had even turned up during the snow the previous winter. If I couldn’t be a musician, then I hoped to be involved in professional golf in some way. It was my second love.
After our round of golf in the morning, we watched the FA cup final on television in the afternoon. I fell asleep for the entire ninety minutes. It seemed that as my dizziness continued I was becoming more and more exhausted. I stayed the night over at James’s house, and although still not feeling right, I continued to fight what was happening in my body. The next day we decided to play golf again.
We started as usual teeing off at the first tee. By this time I was feeling extremely drained and my body was really struggling. However, I had felt tired before at the start of a round of golf, and, once begun, it had always passed. Today was seemingly different though. By the second hole I was far from feeling better. Yet, I decided to push on. It was a beautiful summer day, and I had been playing well recently. I didn’t see why I should have to spend my holiday resting.
By the start of the fourth hole I just wanted to sleep. The fourth hole at Betchworth Park, where James and I played, was a long par four where you teed off from an elevated position over 150 yards of heather. James made a great 250-yard drive right down the middle of the fairway. It was my turn. I had just bought a new driver, which I had been dreaming about having for several years. I had finally saved the money and purchased it for myself as a reward for working so hard toward my exams. This was a perfect opportunity to test out my new toy: a long straight hole with the added distance brought by teeing off from an elevated position. I didn’t care. By now I just craved sleep like I had not been to bed for days. I managed a feeble drive off to the right hand side, barely clearing the bracken and bunkers.
James knew that I had been feeling under the weather and could see how much I was having to battle with my body to drag myself along the path, through the bracken, towards my ball in the rough.
“Are you sure you wanna keep going?” he asked. “We have all summer to play, why not go home and get some kip?”
“No, I’m alright,” I tried to reassure him.
“Well at least take my trolley,” James offered.
Although reluctant to make James carry his bag, which was substantially heavier, I really was exhausted.
“If you’re sure, that would be cool,” I weakly thanked him.
We attached my bag to the trolley and continued towards my ball. After walking another hundred yards, I had to sit down. I just didn’t feel I could walk another step.
“Do you mind if we call it a day?” I mumbled.
“Sure, you look like hell,” offered a concerned looking James. “There is no way this is a hangover.”
“I know,” was all I could think of to say, becoming increasingly worried at what might really be wrong with me.
I tried to get up, but stumbled back down again. My legs just didn’t seem able to take the weight of the rest of my body. The dizziness of the past days had also reached a new climax. My head felt like it was no longer even attached to my shoulders. I knew things were bad; I just didn’t know how bad.
James took my bag, and I eventually managed the short walk back to the clubhouse. I got a lift home and went straight to bed. Lying in that bed should have been the greatest relief of my life. It wasn’t. Lying in the bed itself was an effort.
As was often the case during illness, I stayed at my grandparents. It was actually here that I spent much of my childhood. My mother worked full time as a company secretarial assistant, and afterwards in the evening she taught the piano four evenings a week, and then also on Saturday mornings. My stepfather had worked shift work since before he and my mum had married when I was seven. As a consequence, there was rarely anyone available at home between 9:00 in the morning and 7:30 in the evening. My grandmother believed that my sister and I needed more attention than was available at home, and so insisted that we return from school to her and my grandfather’s house until our mother had finished teaching. We would then return home for a few hours, where we would sit in front of the television upstairs on our own.
As I spent the next few days sleeping and watching television, no one really gave my health another thought. Everyone assumed that what I was experiencing was due to exam stress and that a good rest would see me back to full health. My grandmother took me to the doctor after a couple of days, just to make sure nothing serious was wrong. I had the usual blood and urine tests, but everything came back as being normal. A virus was decided to be the cause, something the doctor told me it was not possible to test for. The diagnosis seemed logical to me. I had been stressed, and certainly hadn’t had as much sleep as I should have. I was informed that such a scenario is classic conditioning to weaken the immune system, and so invite a virus to enter the body.
My energy levels changed very little over the next couple of weeks, although rest did begin to bring more of a relief. Apart from intense fatigue and dizziness, I also developed pains in my muscles and joints. My legs especially troubled me. I had often suffered from aching legs when tired in the past, and this seemed to be the case now more than ever before.
My prime concern was that I still had two exams left. They were both Design and Realisation papers, and together were worth fifty percent of my final mark for that course. For a few days it seemed that it might be impossible for me to take them, as they were two and half hours each and just getting out of bed meant the room would spin uncontrollably. The thought of missing the exams due to illness was hard to take, especially as I had worked so incredibly hard for my coursework.
I had made an electric guitar. The rest of the class had ruthlessly mocked me all year, thinking the idea ridiculously over-ambitious. They had designed and built simple things like model boats or rabbit hutches. The mocking had only made me more determined as I spent many lunchtimes and extra hours after school trying to complete my invention. It had been a true labour of love. Time had ended up getting the better of me, but despite not finishing completely, I had still scored the highest mark in the year. It felt great to succeed against the odds.
Fortunately, by the time the exams came my energy had improved just enough for me to be able to go out of the house for several hours at once. Arrangements were therefore made with the school that I could sit the exams with other students who had special needs, meaning I could leave early if I had to. The day of the first exam came just under two weeks after that first Thursday morning at the hairdressers. I thankfully managed to get through it with few problems.
By the second exam, a couple of days later, I was actually starting to regain significantly more of my energy. In the evening afterwards, Emily and I went to an end of exams party to celebrate our final freedom. Despite still feeling better I ended up only staying a couple of hours. As the evening had gone on, it had become more and more difficult to fit in with my friends without drinking any alcohol. I hadn’t touched a drop since the previous party, as the last thing that I wanted was to aggravate how I was feeling. I just hoped that life would get completely back to normal soon so that I could put my mind back to my three loves: music, sport and Emily.
The next few weeks did start to see even more of my energy returning and the dizziness finally beginning to subside. I continued to go out for longer and longer periods and began to resume life as I knew it. Within another couple of weeks, I decided I was well enough to start my two summer jobs. Apart from wanting to get back to normality, I also desperately needed the money to fund my holiday to Shropshire later that summer.
My summer jobs were gardening for one of the senior members at the golf club, and working as an office junior at WS Atkins, an engineering company. The first week was no problem, I got tired, but I only worked four days - two gardening, and two at the office. It was not until the second week that things really started to change once more.
I spent the Tuesday mowing the lawn at my gardening job where I was helping to renovate the garden. I was feeling extremely weak again. The mower was very heavy, and there were several acres to be cut. Making the task even more difficult was the fact that the lawn was on an extremely steep hill. My rapidly draining energy meant that what was a challenging task anyway started to become almost unbearable. I sweated and strained in the hot sun, pushing myself all day long. I simply didn’t know how to say “no” and just stop. As far as I was concerned my body should have been able to do whatever I asked of it. It had, after all, always done so up until recently.
By the evening I was horribly exhausted. However, I had arranged to go and see Emily – my reward for a long day’s work. We decided to go for a short walk together around the recreation park at the back of where she lived. As we reached the lake, we stopped for a few minutes to throw some bread to the ducks.
After running out, we headed toward the other end of the park where the sports pitches were. I was really trying to be cheerful and good company for Emily, but that wasn’t how I felt. I was increasingly frustrated with my health and how it just seemed to be going from bad to worse. I told myself that it was my problem though, trying as much as I could to be the person that I knew she wanted me to be.
As we walked past the sports pitches, I spotted someone I knew from some of my classes at secondary school training with the local football team. I tried to watch. Something was not right with my vision. Everything seemed blurred and I just couldn’t focus properly. I somehow knew my eyes were fine, yet something clearly wasn’t. The more I tried to focus, the more blurred everything became. My heart started to race with anxiety. What the hell was happening to me? Why had I not recovered after a few weeks’ rest? What else could I do? How I longed to just run around and forget about the bizarre symptoms I was experiencing. However, I had more pressing things to worry about: tomorrow I was due to work at the office.
It was a gorgeous summer morning as I set off for the train at 8:15. The warming sun reflecting off the car windscreens onto my tanned skin reminded me of how much I normally loved this time of year. Playing sport at every opportunity meant I was always out in the sun developing a great suntan. That was who I was, an active and energetic teenager. The more I was losing touch with that, the more I was losing touch with myself. I was starting to see a different kind of me. I didn’t like it.
I arrived at the office in plenty of time and started going about my usual duties of photocopying and typing. The feelings of the previous weeks were back with a vengeance. I was dizzy and tired, and increasingly struggling to concentrate. However, I had already started working three weeks late for the summer due to what was happening to my health, and although I had quite a lot of control over my hours, there was work that people were expecting done. I decided to push on. I hadn’t passed out in the hairdressers. Why should I now?
When lunchtime came I went for the usual walk, in the hope that it would ease my feelings of dizziness and exhaustion. It hadn’t worked in the past, but it would again give me space. I headed towards the town, listening to my Walkman as I walked. My head was filling with anxiety. What was going on? I had already taken a good few weeks’ rest. It was becoming abundantly clear that I did not have a simple virus infection. Why was this happening to me? Suddenly the music on my Walkman became flat and started to slow down. It quickly came to a stop. For a minute I wondered what was happening, but it soon clicked; the batteries had run out. I headed towards the newsagents to get some new ones.
Before I knew it my lunch hour was gone and it was time to return to the office. I had been putting off what I had to do that afternoon for as long as I could. I had to make telephone calls to other companies on the mailing list to update the WS Atkins database. I hated using the telephone, especially to people I didn’t know. However, I couldn’t say anything to my boss. I had been brought up to please other people over myself, and that is what I attempted to do.
I eventually plucked up the courage to make the first call. It was a wrong number. I tried the next one. The company had moved. The fear was rising; I was feeling worse than I had done in weeks. I tried to fight it, promising myself that after today I would take it easy again. I called the next number on the list. This time I got through and was able to ask the list of questions I had in front of me. The person was helpful, which surprised me. I wasn’t used to being treated with kindness. I decided perhaps it mightn’t be that bad.
After I finished the call, I got up to go to the toilet. A huge wave of nausea and dizziness swept over me and I dropped back in the chair. I felt horrific. After a few minutes, I managed to stumble to the toilets and sat down in one of the cubicles. Hiding from the world for a while, I attempted to reassess.
As I sat there, trying to understand what was happening, I began to notice how, like the night before, I couldn’t focus properly. This was becoming scarily familiar. The room was blurred, but, once again, I knew there was nothing wrong with my eyesight. The problems seemed to be with my balance. What on earth would cause my balance to be affected?
I wanted to wretch my guts out into the toilet and have some visible expression of the horror that I felt inside. Yet, somehow there was no release. I wanted to scream, but again I couldn’t; I was too scared to cause a commotion. I just tried to swallow my suffering and push on, hoping that everything would be okay. However, even swallowing normally was starting to feel wrong. My entire body just didn’t seem to be working the way it was designed to. My balance, my heart, my eyes, my swallow reflex, they were all going wrong; what was happening to me?
I still had three hours of the working day left. Yet, I was ahead of schedule and so could call it a day if I had to. But I didn’t want to go home early. It would mean losing money and could also get me a bad reputation. I questioned inside: why should I have to keep missing out on my summer of freedom? My stubbornness and determination kicked in and I pushed myself to continue. I decided on no more telephone calls though. I just did some simple typing and tried to keep my head low. I thankfully managed to get a couple of naps with my head on the desk when no one was watching. I felt even further sickened by my having to do this just to survive the day.
By the time I got to bed that night, I was as ill as ever. It was quite obvious that something serious was wrong. However, I was an optimist. How bad could it really be? Surely I would get better with time? Thankfully, at that stage I never dwelled on how much time.
