My name is Tom Martin and I suffer from M.E.
I've been thinking about that sentence for a long time now. To be perfectly honest it scares me, but seeing it up there now in black and white feels good. It feels like the right time in my life to talk about it.
Up until recently I would try to do pretty much anything to avoid talking about my M.E. I used what I liked to call the British ostrich tactic, a stiff upper lip, bury my head in the sand and carry on as normal. Nothing to see here folks, EVERYTHING IS OK. I would ignore my symptoms and try to live a regular life covering up anything that remotely showed what I was feeling. I preferred to say nothing at all, but if anyone asked I was better, I was definitely better. The more I said it the more I was trying to convince myself.
I was embarrassed about it, I mean, how do you tell people you need a day off or can't go out because you are tired? If feels like the excuse you use when you can't be bothered to make an excuse up.
Ok, so it's more than just tiredness, but it becomes really difficult to explain, sometimes I struggle to understand it myself. As a result only a hand full of people know what I went through, I just covered it up, from friends, colleagues and pretty much everyone. As time passes it becomes even harder to talk about it. How do you suddenly say all this to people you have known for years and who have no idea?
So I thought I would do the 21st century thing, write it in a blog and post it online for all to see.
I have had M.E for well over half my life now. I was 12 when the illness first hit. In the space of a few weeks I went from playing every sport I could lay my hands on to hardly having enough energy to lift myself up off the sofa. I had Flu then tonsillitis and just didn’t recover. While the flu symptoms disappeared I was left with that overwhelming sense of exhaustion that comes with the illness. To do anything felt like wading through quick sand, everything I did seemed to cost me huge amounts of energy.
To a young teenager this was a confusing time in my life. For the first time my body would just not do what I wanted it to. The more exhausted I became the less I could do. At my worst I was pretty much house bound, my physical condition deteriorated to such a state I needed a wheelchair to go on walks with the family. Both physical and mental activity would leave me drained. I struggled to concentrate. Reading more than a paragraph, even talking became difficult, my voice became a whisper. The biggest difficulty was that no one seemed to know what I had.
After what seemed like forever I was finally diagnosed. One day I saw a consultant who had been reading into research on the illness being done in the USA.
He rattled off a load of symptoms:
- Fatigue following mental or physical activity
- Intolerance to exercise, joint pain, muscle pain
- Memory, concentration or attention problems
- Clumsiness, walking difficulties
- Sore throats, enlarged glands
- Headache
- Temperature control problems
- Flu-like symptoms
- Sleep disturbance
It took a while but eventually I started to recover. Small things at first, I would take a step more each time I walked down the drive or read a paragraph extra in a magazine. The downward cycle had been broken, yes it took three long years but eventually I was able to recover to a stage where I could go to college.
Finally a normal life.
Or so I tried to make people believe. If anyone asked it was at this point I considered myself better. This was the moment I had fully recovered. The truth is though that the M.E has never left me. In my head I thought it may disappear like a common cold. One day I would wake up, and the feeling of fatigue would be gone. In reality though this isn’t how the illness works. It still affects my everyday life and I have had to develop coping mechanisms that allow me to help control the illness and push it into the background.
So what’s it like? Well probably the best way to describe my version of M.E is permanent jet lag. You know, that feeling of having to claw your way through the hours until you can get to bed at a sensible time. Everything feels like double the effort, your limbs feel like twice the weight. The smallest task seems an impossibility. It’s the kind of tiredness that dominates your thoughts, leaving you unable to think of anything else. All you want to do is sleep. Your head feels like it’s surrounded by cotton wool, the kind of feeling you have during a cold. Often thinking of things to say or solutions to problems feels like delving around in a thick soup, desperately trying to fish out the croutons of ideas that you know are in there somewhere. It becomes hard to verbalise your thoughts. The connections between your brain and mouth just don’t match up. On the bad days you feel like the world is moving in fast forward around you, everything happens too quickly, leaving you unable to make decisions. Unable to keep up.
Now if this was just jet lag then you stick it out as long as you can before bed safe in the knowledge that after a good dose of sleep you will most likely feel better. The M.E never goes though, every day I wake up and all this is there with me. Ok, so it does change from day to day. If I get my sleep/diet/exercise pattern just right then I can cope with it but it’s always there lurking in the background. Some days it’s a mild jet lag, others it’s a full on trip to New Zealand.
The ostrich tactic had worked well for many years. I would ignore my symptoms and push on through. There were times I think I came close to breakdown but I needed to believe I was better, to believe that the M.E had gone. It’s what got me through those first few years of my life, version 2.0.
This tactic worked until a couple of years ago when I had a really bad winter. I was struggling with work and gradually slipping back to where I had been. My first thought on waking up in the morning was how long it would be before I could get back into bed again and try and get some sleep. That's when I decided to start running. By doing small amounts I could try and change my body and my sleep patterns without making myself so tired I would fall back to square one. I later realised that I had stumbled upon an official recovery method called graduated exercise. After a while it seemed to make sense. Those first few runs were torture but eventually I felt a change, a spark of energy. It was only gradual, I would run a street further each time but running started to help. It not only made me physically tired which meant I could sleep more easily. It helped with the mental side of the illness. It gave me something to look forward to and goals to achieve. Finally something was working and I was starting to win the battle.
Running is now the most important coping mechanism I have. It has made me confront my illness rather than trying to ignore it. No longer can I use the ostrich. It has served me well though, it was what I needed to do to get on with life. The M.E had to be buried. If I didn't want to be defined by my illness I couldn’t use it as an excuse. I wanted my actions and achievements to be judged on their own merits. I didn't want people saying “He’s doing well despite…” or “That’s pretty good considering.” I wanted to see what I could do on a level playing field.
Running gives me that level playing field. In races I am judged on my running and running alone. It’s me versus the clock.
A few years ago I would have laughed at the suggestion of running a marathon however it now if feels like the natural progression of my running. In May I will run my first 26.2 mile race in Liverpool. It’s something that scares me and excites me in equal measure. I want to use this blog as part training diary part M.E ramble. Hopefully I can explain a little more about the illness and how I use running to cope with it.
So to draw a neat little conclusion to this first ramble, yes I have M.E but I am able to run and you know what, it's pretty damn good. I’m going to run this marathon and (deep breath) I'm going to do it in under 3hours! There I said it!
I’m not going to lie, I am running this Marathon for selfish reasons. First of all I want to see if I can actually do it and then how quickly I can do it. Whilst I did not set out to run for charity M.E has been a huge part of my life so I feel it is only right to raise some money to try help others who have been affected by the illness. Have a look at my just giving page and if you can please donate. It’s a very worthwhile cause.
