It was just a normal slightly damp, rainy Sunday afternoon. I’d been down at the local park indulging in my usual weekend pastime of playing football and trying to plaster myself in vast quantities of Mother Nature. I always used to measure how well a game had gone not by skill or goals scored but by just how much of my once gleaming clean kit had been coated in thick brown mud. The game had gone well, there was not much kit left showing through the dirt.
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| Looking remarkably clean playing football in the back garden |
Normally a game of football would be a walk in the park. I would run home and think nothing of playing basketball or tennis after. I had endless amounts of energy.
Today though, was different. I felt heavy and tired. Keeping sleep at bay became impossible. Eventually I gave in, the sofa was just too inviting. Just a few minutes kip. Nothing much. Afterwards I carried on as normal, why wouldn’t I? Sleep had done its job and I felt fine again. It was nothing that unusual but maybe that afternoon was the first sign of my body not being able to keep up with the active life of a teenage boy.
A few months later the flu hit. Just a winter bug, nothing unusual. I would be back to normal after a week or so. Then I caught tonsillitis. Another week or so off school nothing too bad. It was just the winter, people always got ill in winter. Usually I avoided the worst of the bugs but maybe this was just my turn to have a bit of bad luck. Those weeks off turned into months, my once active limbs turned heavy and my mind filled with fog. While the illness went most of the side effects it brought stayed with me. They just didn’t clear. No matter how hard I tried I couldn’t do the things I wanted. The tiredness consumed me and I knew I was in trouble, I just didn’t know what was causing it.
Part of the problem back then was just getting diagnosed. Half the battle was getting someone to believe me and tell me that I was actually ill. Twenty years ago the knowledge about M.E was severely lacking, the debate went on as to whether it was actually an illness.
On the rare occasions I would make it into school I would be met with the comment ‘well you don’t look ill.’ There was this overriding sense that people just didn’t understand what I had. But then, how could they? I couldn’t even understand it myself.
What's worse was that the doctors had no idea what was wrong with me. I had so many blood tests that I felt like a piece of Swiss cheese. Every time we would go through the same process. Blood tests would happen and the results would come back and show I was supposedly perfectly healthy. The doctor would then turn to my parents ignoring me completely telling them that, "as far as I can see there's nothing wrong, get him back into school he should be fine" This just confirmed to me that they thought I was lying, skiving, trying to bunk off and skip exams. It was the only logical diagnosis, the tests showed nothing was wrong. This just confused me even more.
There are only so many times you can be told that you’re lying before you start to question yourself. As a twelve year old kid I trusted those in a position of power. The doctors knew so much more than me. What if they were right? What if I wasn't ill? Maybe I was faking it? These questions would soon be answered when I tried and failed to get back to school again but it would play on my mind. Why couldn’t I do what I had done before? Why could others still do all the things I used to? Why was it just me? All these questions would spin around my sleepless brain, I would spend another night pondering them, getting no where nearer to answers.
I was pushed around from doctor to doctor, most of them performing the same tests and getting the same non existent answers. They would scratch their head and then perform more tests. One doctor tried to prescribe me antidepressants. I think it was more for their piece of mind, just to say they had done something.
The thing was I wasn’t depressed. Nowhere near. Yes my world had changed beyond all recognition but I tried to stay positive and enjoy the things I could do. My Formula One obsession only got worse and rather than playing sport I decided to watch it. And I mean all of it. Snooker, darts, golf even indoor bowls became interesting to me. That’s how bad things had got. My life was about getting the most out of the limited range of things that I could do rather than longing after the things I couldn’t. I couldn’t dwell on the things I had lost. So I stayed positive and I would go into the doctors with a joke and a smile. This just confused them further. Surely he must be depressed, he must be covering it up.
After nine long months it finally happened, someone told me I was ill and told me what I had. M.E had been mentioned before but not in much detail. I was convinced most of the doctors thought of it as a non illness. An excuse made up by lazy people to justify their lack of participation in life. That day things changed, someone believed me. My parents had been pushing for a second opinion and for the first time I saw a doctor who had done some research on the illness. He had worked with people who had M.E and read the latest research that was being conducted in the U.S. Finally someone had knowledge and experience about what I had rather than just looking at test results and telling me that there was nothing wrong. The consultant reeled off a list of symptoms, I nodded my head to pretty much all of them and he said “Well it's obvious you have M.E then.”
Finally I was officially ill. I can’t tell you the relief it was to hear those words and to find out that it wasn’t just me who had this strange thing called M.E. After all the months of self doubt I finally had some answers to all the questions I had been asking. Now I had piece of mind I could try and work out how to get myself better. The first stage in my recovery was actually being told that I was Ill.
Today though, was different. I felt heavy and tired. Keeping sleep at bay became impossible. Eventually I gave in, the sofa was just too inviting. Just a few minutes kip. Nothing much. Afterwards I carried on as normal, why wouldn’t I? Sleep had done its job and I felt fine again. It was nothing that unusual but maybe that afternoon was the first sign of my body not being able to keep up with the active life of a teenage boy.
A few months later the flu hit. Just a winter bug, nothing unusual. I would be back to normal after a week or so. Then I caught tonsillitis. Another week or so off school nothing too bad. It was just the winter, people always got ill in winter. Usually I avoided the worst of the bugs but maybe this was just my turn to have a bit of bad luck. Those weeks off turned into months, my once active limbs turned heavy and my mind filled with fog. While the illness went most of the side effects it brought stayed with me. They just didn’t clear. No matter how hard I tried I couldn’t do the things I wanted. The tiredness consumed me and I knew I was in trouble, I just didn’t know what was causing it.
Part of the problem back then was just getting diagnosed. Half the battle was getting someone to believe me and tell me that I was actually ill. Twenty years ago the knowledge about M.E was severely lacking, the debate went on as to whether it was actually an illness.
On the rare occasions I would make it into school I would be met with the comment ‘well you don’t look ill.’ There was this overriding sense that people just didn’t understand what I had. But then, how could they? I couldn’t even understand it myself.
 |
| Me with M.E.I still looked the same but in the space of a few months everything had changed. |
There are only so many times you can be told that you’re lying before you start to question yourself. As a twelve year old kid I trusted those in a position of power. The doctors knew so much more than me. What if they were right? What if I wasn't ill? Maybe I was faking it? These questions would soon be answered when I tried and failed to get back to school again but it would play on my mind. Why couldn’t I do what I had done before? Why could others still do all the things I used to? Why was it just me? All these questions would spin around my sleepless brain, I would spend another night pondering them, getting no where nearer to answers.
I was pushed around from doctor to doctor, most of them performing the same tests and getting the same non existent answers. They would scratch their head and then perform more tests. One doctor tried to prescribe me antidepressants. I think it was more for their piece of mind, just to say they had done something.
The thing was I wasn’t depressed. Nowhere near. Yes my world had changed beyond all recognition but I tried to stay positive and enjoy the things I could do. My Formula One obsession only got worse and rather than playing sport I decided to watch it. And I mean all of it. Snooker, darts, golf even indoor bowls became interesting to me. That’s how bad things had got. My life was about getting the most out of the limited range of things that I could do rather than longing after the things I couldn’t. I couldn’t dwell on the things I had lost. So I stayed positive and I would go into the doctors with a joke and a smile. This just confused them further. Surely he must be depressed, he must be covering it up.
After nine long months it finally happened, someone told me I was ill and told me what I had. M.E had been mentioned before but not in much detail. I was convinced most of the doctors thought of it as a non illness. An excuse made up by lazy people to justify their lack of participation in life. That day things changed, someone believed me. My parents had been pushing for a second opinion and for the first time I saw a doctor who had done some research on the illness. He had worked with people who had M.E and read the latest research that was being conducted in the U.S. Finally someone had knowledge and experience about what I had rather than just looking at test results and telling me that there was nothing wrong. The consultant reeled off a list of symptoms, I nodded my head to pretty much all of them and he said “Well it's obvious you have M.E then.”
Finally I was officially ill. I can’t tell you the relief it was to hear those words and to find out that it wasn’t just me who had this strange thing called M.E. After all the months of self doubt I finally had some answers to all the questions I had been asking. Now I had piece of mind I could try and work out how to get myself better. The first stage in my recovery was actually being told that I was Ill.
Here is a link to my just giving page, raising money for Action for M.E.
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