“These pains you feel are messengers. Listen to them.”
WHAT DO YOU THINK WHEN YOU HEAR THE NAME ME?
AS A MAN WHO has lived with this poorly understood condition for almost twenty years, I would like to share my story and offer an insight into the devastation it can cause to the lives of those affected. I would also like to offer a message of hope to fellow sufferers – if you live with ME, you are not alone.
I had encountered a string of health problems throughout my childhood and adolescence. From irritating knee pain to minor kidney problems, there always seemed to be something niggling away in the background. One problem would run its course only to be replaced by the next.
Although somewhat frustrating, this never stopped me functioning each day and I remained active as much as possible. I got on with life and worked around each complaint as best I could.
Shortly after my eighteenth birthday I started experiencing bouts of acute pain in my abdomen. My symptoms included chronic muscle cramps, intense sharp pains in my gut and bowel and bloating in my abdominal area.
These episodes gradually became more frequent and more severe. I remember the pain being so intense that one evening I lay in the foetal position begging my mother not to call an ambulance. I was a proud young man and wanted to prove to myself I could ‘handle it’.
After several weeks of these episodes, I had a change of heart and made an appointment with my GP. A couple of visits, and several tests, later I was diagnosed with Irritable Bowl Syndrome (IBS) and was handed a leaflet with a small amount of information about the condition and sent on my way.
The following months resulted in further visits to the surgery with a number of additional complaints. Something wasn’t right; I felt very out of balance. But this was just the beginning.
A year later, my health broke down completely. A painfully restless night in the spring of 1998 manifested into an onset of flu-like symptoms the following morning. The virus lasted a number of weeks.
I was floored initially but managed to pick myself up and battle through each day despite feeling very unwell. I thought I could shake it off as I had done with my health problems in the past. But this time it was different. This time it was relentless. I was getting weaker by the day.
My symptoms continued to worsen as the weeks and months passed by. Each day I woke up feeling worse than the last and, no matter how much I slept, I never felt refreshed.
My body felt heavy and most of the time I just wanted to lie in a darkened room. The pain was not just in my stomach now; it was spreading all over my body.
My muscles constantly ached and burned, my joints felt like they had been clubbed with a sledgehammer, my glands were swollen and tender and my throat was constantly inflamed.
It was like suffering from a hangover, jet lag and flu all at the same time combined with the most extreme exhaustion I had ever experienced.
I had a good relationship with my GP, but each visit resulted in nothing more than a sympathetic ear and the offer of a bottle of antidepressants.
Despite my declining health, I didn’t look unwell. For this reason, my attempts to tell people how I was feeling were often dismissed.
When I became unwell I was studying at college and working part-time as a door steward at a local nightclub. My evenings were often spent training in the gym. The advice I was given by my peers was to man up and get on with it. And that was exactly what I tried to do.
I was becoming somewhat embarrassed by my condition after my failed attempts to convince others of how debilitating it was becoming. Eventually I stopped talking about it altogether. I tried to carry on with life in an effort to seem ‘normal’ for fear of ridicule or being branded a hypochondriac.
But my denial only made things worse. The slightest exertion was making me breathless. I could not hold a conversation without losing concentration and I struggled to retain information. It was becoming impossible to hide it.
I dropped out of college because I had fallen too far behind. My attendance was so poor I sometimes missed a fortnight at a time, and the thought of catching up and getting out of bed to attend morning classes was placing added stress on my already aching body.
In a short space of time I had lost my health, my fitness, my confidence and my ability to think logically and clearly. I was no longer in education and eventually I was forced to give up work. I was losing interest in life.
Over the next year, I was referred to a number of specialists. I was frequently pricked with needles to extract blood and required to produce multiple urine samples for on-going tests. On occasion I was asked to strip down so that a camera could be inserted into my body to see what was going on inside.
Sometimes I left the treatment room feeling like I hadn’t really been listened to or that they didn’t believe it was as bad as I was describing. It was difficult just to make it to appointments and each visit was more difficult than the last. In amongst the negative experiences, there were occasions when I met with doctors who I could see genuinely wanted to help. But one thing they all had in common was none of them knew what to do.
I couldn’t believe how little help was available for someone in my position. It was a scary time because I did not know what was wrong with me. My symptoms were multiplying and getting worse all the time. For all I knew I was dying a slow painful death – it certainly felt like I was.
After eighteen long months of despair I met with a specialist in Aberdeen who seemed to have an understanding of my wide spectrum of symptoms. I was diagnosed with Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME).
I am thirty-five now and I have never recovered.
I had heard of ME before, but I knew very little about it. Such is the scepticism surrounding the condition, I knew it as the illness where people ‘get tired’. Now I was experiencing it first hand and was living with a level of pain and exhaustion I did not think could exist inside the human body.
When I began researching my condition I was horrified to learn the disease can last for decades, even life, ranging from low energy levels to a bed ridden state of unimaginable discomfort. In some cases, the sufferer is confined to a wheelchair and in extreme cases can remain in a state of paralysis for the rest of their life having to be fed through a drip. Sadly, the suffering can be so great, some of these brave souls take their own life.
How could it be that so little is known about something so devastating?
In his book ‘Better Recovery from Viral Illnesses’ Dr Darrel Ho Yen concludes that people who have ME can experience a greater level of pain than those suffering from terminal illnesses such as Multiple Sclerosis (MS) and a variety of cancers.
Dr Nancy Klimas splits her time researching and treating people with AIDS and ME/CFS at The professional Arts Centre in Miami. In 2009 she said “My HIV patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. My CFS patients, on the other hand, are terribly ill and unable to work or participate in or care for their families. I can tell you that if I had to choose between the two illnesses [AIDS and ME/CFS] I would rather have HIV.”
To experience chronic pain and exhaustion for a short time can be distressing. But can you imagine living with these symptoms for months; years; even decades, without respite? How difficult would it be to function from day to day on even the most basic level? A person with ME can find even the simplest of tasks complicated, draining and time consuming.
ME can affect every aspect of a person’s life and the lives of those around them. Imagine being so unwell you are no longer able to work. This creates a lack of income which leads to financial worries. Limited finances and poor health lead to social withdrawal, which then leads to low self esteem, anxiety and depression which can exacerbate the physical symptoms and crush a person’s drive to get better. And so the vicious cycle repeats.
This doesn’t just affect the sufferer. What about those who have a partner or family member who has given up work to care for them on a full-time basis? Their life can be affected to almost the same degree as the sufferer’s.
Studies show people with ME are often ‘high achievers’. To deprive a person of meaning and purpose can be devastating – it can lead you down a very dark path. I have feared for my mental health many times over the years.
I have been so depressed my behaviour led to the breakdown of personal relationships. I have pushed people I cared about away and I have hurt them because I felt I had nothing to offer. My situation has seemed so hopeless I too have questioned whether I wanted to continue living.
My health continued to deteriorate for a number of years after my diagnosis. I returned to part-time employment several times over these initial years, but was not able to remain in any job for long before the sickness days piled up and I was completely burned out. Eventually I dreaded going to work because my pain was so intense and I had become sensitive to stimuli such as noise, light and busy places.
My symptoms were ever evolving and new stress-ors entered my body all the time. Just when I was finding coping strategies, my already aching body was swamped with all sorts of new symptoms. After many failed attempts to re-join the world, I could no longer take the disappointment and I withdrew from society, and life, altogether.
I was now in my mid-twenties and hadn’t known a life without pain since I was a teenager. Each year was harder to get through than the last. I was missing out on my defining years. Only a vestige of hope now remained.
Ten years ago, I reached rock bottom. My days were spent alone in bed or on the couch. I was in constant agony and it was a struggle just to wash myself and prepare meals.
It felt like there was an acidic substance circulating in my body melting my organs, and my muscles felt like they were on fire whilst being sliced by a rusty blade.
My bones felt like they had been placed inside a vice and tightened until they were beginning to shatter.
My stomach was constantly bloated and tender. I dreaded meal times because eating only increased the pain.
My body was so sensitive it hurt just to be touched.
The strain on my central nervous was causing me to think, and at times act, irrationally. I was suffering from confusion and short term memory loss. And my concentration span was so short I struggled to watched television or hold a conversation.
I was in a very deep depression and had been suffering from anxiety and panic attacks for some time.
I was often unable to think about ways to improve my quality of life because my cognitive function was so poor and my brain was too exhausted. I had developed obsessive compulsive tendencies as a means of coping with losing control of my life.
Living with such discomfort and isolation was near impossible.
I was in a deep hole and no one was coming to rescue me. I could no longer rely on the medical profession to provide the answers I so badly needed. And I could no longer wait for someone to come up with a cure – I had to take responsibility for my health and search for some answers of my own.
This was going to be my greatest challenge since becoming unwell because several years of relentless exhaustion had taken its toll and my enthusiasm and drive to get well was almost non-existent.
Despite having little fight left, I was going to have to pick myself up and confront this thing that was living inside my body.
But where to begin? I had made a vow to take responsibility for my health but didn’t really know what to do or where to start.
Initially I was fearful of doing anything that might increase my pain or set me back. It was scary, but I felt somewhat liberated after so many years. I had regained a small measure of control again, perhaps not over my health but at least over the decisions I made.
I had always been interested in fitness and nutrition, so I started making gradual changes to my diet. I began eating food in as close to its natural state as possible whilst cutting down on processed foods. I stuck to food that I digested well and increased my water intake to aid the absorption of nutrients. My food would be my medicine and my medicine would be my food.
I also began studying the relationship between mind and body and the impact of thoughts, emotions and behaviour on the physical body. Reading was very difficult because I often struggled to retain information and could not concentrate for long before I was exhausted.
I tried my best not to become frustrated because this only depleted my energy further and often resulted in me losing my temper and driving my fist into a wall or through a door.
Whenever I had the energy, I surrounded myself with inspirational material in the form of music, books and movies. I decorated my flat with positive pictures and symbols of strength and health. I spent as much time as possible with people who supported my growth and I tried to make decisions that empowered me.
Eventually, despite my pain, I started exercising again. I had always been told to rest as much as possible. I challenged this by reminding myself that too much rest had brought me nothing but boredom and depression and had done little to alleviate my pain and exhaustion.
I only wanted positive input in my world. Anything that drained my energy such as foods high in sugar or saturated fat, negative people and certain television programmes were avoided whenever possible.
I started to view health as a jigsaw puzzle. It might take me a lifetime to complete the puzzle, but one thing I had in abundance was time. I was discovering my own truths. I was beginning to develop new beliefs about my condition, its cause and what I needed to do to manage it better.
Some pieces of the puzzle came to me early on and I was clear on what I had to do to manage my pain. Other pieces still allude me.
I continue to improve and refine my eating habits, exercise regularly and put myself in situations where I can develop self-confidence.
Mastering my thoughts and feelings has proven more difficult. Ten years on, there are still occasions when I allow fear and negativity to tighten its grip. I still experience periods of depression and self-pity and question whether I want to go on when the pain becomes too much. My point being, the ability to grow and develop is endless. We can always strive to learn and do things better and each time we fall, we must get back up.
In recent years, the Western World has become faster and more materialistic. People work longer hours, spend less time at home, eat faster, walk and talk faster, spend a vast amount of time learning about the latest advances in technology and use social media sites to express themselves.
Some of this change has benefited us greatly by improving how we access information and communicate in certain situations, but I believe so many of us have lost the essence of why we are here.
My health would not allow me to live at this pace – and for that I am thankful. If nothing else, the loss of my health gave me the opportunity to take a back step and see the beauty in life that so many of us either take for granted or miss in our new world of distractions.
Could learning to pay attention to what is going on internally within our bodies and externally in our environment be key to the healing process?
Although unpleasant, the presence of pain is a sign something is not right and that some form of positive action is required. If we do not enforce change, the pain continues.
If our bodies can create a disease state, does it not stand to reason they can also create a healing state when placed in the right environment?
In his book ‘Chronic Fatigue Syndrome, ME and Fibromyalgia: The Long Awaited Cure’, Dr David Mickel states “These conditions are reaching epidemic proportions worldwide – especially in the western world”.
Eaton adds to this by suggesting there are around 1.2 million diagnosed cases in the UK alone and more than 4 million in the USA.
Is it a coincidence that the number of cases of ME and associated conditions are rising in modern society? I believe this rise will continue until we address the problems of modern living.
Over the years, I have gradually regained a degree of sovereignty over my health. I still experience these symptoms on a daily basis, but I no longer live under their constant dominion. Paradoxically, I have grown to accept my pain as a reminder when I am making poor decisions or not being true to myself.
I look healthier now than I did ten years ago; I seldom take medication for my symptoms; I am satisfied with my level of fitness; and I have managed to remain in employment for several years with a good sickness record. I may not be able to exercise as I once did, but the fact I even make it to the gym again is a massive success.
I am a more empathetic person as a result of my experiences and have learned to feel a great deal of compassion for the suffering of others. As a result of this, I make friends more easily and form more meaningful relationships.
Despite my limitations, a more disciplined approach to health has made it possible for me to focus my energy on participating in life again, even if only on a part time basis. I have climbed mountains, travelled alone to countries at the other side of the world, skydived and gained qualifications in drama and fitness. I have now returned to my passion of fitness training.
Without taking responsibility for my situation and discovering my own truths, I would still be spending my days alone with a blanket and hot water bottle watching life pass me by.
Living with ME is a terrible ordeal – but it doesn’t have to mean the end; I’m proof of that. If I could say one thing to anyone suffering from the condition it is this; you can still live a meaningful life and if you have the faith of a mustard seed you can move mountains.
For some, it can be a long path to recovery. Embrace the journey; you may learn more about yourself on the way than you could ever have dreamed.
The sky may be overcast but the sun has not gone.
Thank you for reading my story and showing interest in my experiences.
Alan J Goodwin