Writing with ME

Writing a book is hard work at the best of times. What's it like with a dibilitating illness?

I have ME.

What does that mean? Myalgic Encephalomyelitis is, by anyone's count, a stupidly long name, but it's arguably more accurate than its other name, Chronic Fatigue Syndrome.

For me, having ME has meant a massive change in life. I used to run 5Km 2-3 times a week. I worked in a stressful job, managing eight different educational courses, from pre-GCSE to degree level. I thoroughly enjoyed walking, having the odd drink, and driving anything with a motor, including aeroplanes.

All of that has gone now.

For the past few years, I have become intolerant to caffeine and alcohol. I cannot even eat a large meal, as it will cause my other symptoms to flare up. My balance is so bad that I need a walking stick outside the house. I can't walk far at all, so need to use either a mobility scooter or an electric wheelchair to simply go anywhere. I cannot drive, as I can collapse with no warning. Memory, immune system, in fact, most of the autonomic system that the body just does without us thinking about it, has been affected. Feeling refreshed after a good night's sleep is now a distant memory; a summer romance from my teenage years.

You know what? It could have been worse. There are some poor souls with ME in a much worse state than I am.

Of course, it still could get worse if I don't carefully manage myself as best I can.

So, I have taken refuge in something I have always loved: books. Not just reading them, but actually writing them. Yes, I'm slow at it, as my concentration doesn't allow me hours of work at a time. There will be days when I can't even concentrate properly on watching a TV show, let alone plotting or editing. Even lifting a phone up to read can be hard going.

But I persevere. Like Stephen Hawing said: "Concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with."

So, what are my strengths? It literally takes me hours to gather the energy to get out of bed each morning. But, during that time, I can think. I can plan, probe at weak points of plot, come up with new ideas or shape old ones.

I can't draw to save my life. But I can learn how to use software such as GIMP to edit other images, or ask my suffering wife to draw or paint for me. In fact, she kindly drew the cover of The Child of Fire and Earth, though I edited it on GIMP.

Apparently, I can even write, according to some lovely reviews and feedback I've had.

All of these things give me something I hadn't had in years: HOPE.

Having a chronic illness can be very lonely. It's difficult for other people to understand what you are going through. It's tough seeing other people do things you used to do. It's incredibly hard living a life that, up until recently, is so far removed from what you had before.

But by keeping my mind sharp, by doing the things I can do well, I have a reason to get up each morning. I have hope that people will enjoy my work (which some people already have done, bless them). I have hope that, regardless of whether this illness fades to a distant memory or consumes me, that what I can do now lives on.

I hope you have time to read them, some day, and remember me.