A Personal Journey

A Personal Journey
May 11, 2012 Paul Tomkins

This is the last day of ME awareness week. Last autumn I was asked by Sir Peter Spencer, Chief Executive of Action for ME, to share my story in the charity’s Interaction Magazine. Given that some of it relates to the creation of this site, I thought I’d also share it here. (Please note, there is no mention of Liverpool’s tactics or whether Andy Carroll was worth £35m).

For some people ME hits them like a speeding train at a level crossing. Bam. Mine, however, approached more stealthily, like a carbon monoxide leak: the slow, insidious creep, imperceptibly enveloping me until, after a number of years, I found myself faded and foggy.

For the longest time I knew that something wasn’t right, but neither I nor a number of physicians could put their finger on it. Still only in my mid-20s, I was more tired than I should have been for someone so previously athletic; had more muscle aches and head pains than anyone I knew; had a sleep pattern that had gone haywire; and, to my horror, experienced the trauma of rapid hair loss (although it transpired that that was merely the onset of male pattern baldness).

It’s been a long journey, from denial and depression to a kind of acceptance that can never be totally complete; part of me will always think I’ll return to normal – that I’ll be running around like a kid again one day. (Perhaps this is also a symptom of being middle-aged, and refusing to accept certain realities.)

As a teenager I’d competed in country cross country races, and played football semi-professionally in my early-to-mid-twenties. At school and college, I’d play football morning break, lunchtime, afternoon break, and then go home and play football; and at the weekend, I’d play for a team.

But by the age of 25 things were changing; I was suffering from post-match exhaustion. It rendered me fairly useless in between games, but abated just in time for the next match, and missing mid-week training actually helped. I was sleeping for several hours immediately after a game, and for the next three or four days felt like an old man. I was forever getting mysterious viruses that laid me low for weeks at a time.

As someone who was fairly driven, I was working hard as a designer at the Guardian newspaper, and somehow managing to get up to Liverpool every other weekend, as a season ticket holder at Anfield. At the same time, having given up playing semi-professionally, I was still playing Sunday League football and five-a-sides at work. But gradually each task started to become too taxing.

I began to struggle to do any of them properly. I knew something was drastically wrong when, during a lunchtime five-a-side game, I was tackled by an obese, middle-aged woman who had all the co-ordination and athleticism of a Henry Moore statue. I tried running past her, but it felt like I was mired in treacle, with legs made of jelly. Her movements were only perceptible via time-lapse camera, but she was still too quick for me.

It was soon after this humiliation that I was diagnosed with ME. I was 28. There followed a series of failed attempts to improve my fitness; also called ‘outright denial’. Sometimes I felt okay during what was only moderate exercise by my old standards – the serotonin and dopamine temporarily masking the problems – only to feel ill for a week afterwards. Eventually I accepted the reality, although not without the accompanying depression. By this stage, in 2001, I was married, with a baby on the way.

Inevitably that didn’t go too well; there was too much pressure, and I was too ill – exacerbated by the depression – to cope. I was forced to find a new job to help pay the bills, and it was a disaster. The first few days were okay, but then every subsequent day took more out of me than I had to give.

While the marriage didn’t last, my son remains my number one priority to this day; even though his arrival adversely affected my health, his presence in my life has given me a lot of joy and strength, and at times has kept me going. When he was born I feared all the things I was not physically able do with him, like run around for hours kicking a ball together. However, for the most part, I’ve learned to focus on what I still can do, rather than that which now eludes me.

And while I’ve had to adapt my thinking, we’ve managed to find things to do together that are not too taxing. And every once in a while, I say ‘to hell with it’, and push myself beyond my limits, such as when going on a short holiday (never more than four days). I accept the fallout from overdoing things, but it can still be hard on those days when I feel too washed out to do much more than watch TV with him. Hopefully he understands.

My nadir was in 2003, when, as a depressed, balding divorcee who only saw his son for a fraction of each week, I was living on Incapacity Benefit in a cheap rented bungalow. I saw myself as only half a man; possibly less – a mere quarter. They were dark days. But the strangest thing about my illness is that it led directly to the most ‘successful’ years of my life. Just as my son came out of a failed marriage, my career came out of my illness.

I’d dreamed of being a writer since about the age of 18, but there was one major obstacle: I wasn’t very good. At school I’d only enjoyed art and sport, and as such, I hadn’t bothered to learn how to write particularly well. From the age of 18 onwards I began to write furiously in my spare time, and that provided my education. Of course, had anyone read my work back then, they’d have said ‘stick to the day job’; they didn’t read it, and obviously I stuck to the day job.

But by 2003 – unfortunately, and yet fortuitously – I had no day job to lose. At the time I was writing about Liverpool FC on the internet, blogging as a hobby (a blobby?), and by late 2004 I thought it’d be a good idea to write a book (after at least two people told me it was worth considering; one hinting that they might even buy it). And so started the journey from societal castaway to reasonably respected writer. It’s not been without its ups and downs, but the past few years have seen me achieve things I never felt possible.

I was lucky in that, unlike most writers, I never suffered rejection letters with manuscripts: I sent my first book, on Liverpool’s 2004/05 season, to just one specialist publisher, and they never even replied. Given my design background, I quickly took the decision to self-publish, and although that meant extra financial pressure and far more work, it gave me control over my destiny, and any deadlines were flexible, as I was the boss. The book topped the Amazon.co.uk football chart soon after its release, and having only had 1,500 copies initially produced, with later reprints it went on to sell over ten times that amount.

Costly print bills due to my naivety meant that I made no profit, but the number of sales, and good reviews, helped my reputation. I was asked to write an unpaid column for the official Liverpool website soon after, a role I fulfilled for five years. Other reasonably well-reviewed books followed, as I became a full-time writer, but the pressure of having to sell a certain number of copies to make a living was immense, especially given the sporadic nature of sales (adversely affected by bad results), and profit margins that, at best, remained slim. Stress, just like physical exertion, lays me low, and it was getting the better of me.

Wondering how I’d continue, Anu Gupta of Digital Query suggested setting up a subscription website, where people pay a small fee each month to read my work. Highly sceptical, I took up Anu’s offer to build, for free, such a site, with payment only due if it was a success; what was there to lose?

Thankfully, the number of subscribers quickly passed the anticipated levels, and now I’m at the point where, for the first time in over a decade, I get a healthy monthly income; two years on from its launch, numbers continue to rise, and the site has won awards.

I wouldn’t say that it’s stress free – maintaining high standards can take its toll, and I’m the type of person that always strives to do better (most of those I know who suffer from ME tend to be similar) – but I can now afford to employ an editor (Chris Rowland), and to pay several of the contributing writers.

The income has allowed me to move in with my girlfriend, Kate, whom I met via an ME forum five years ago. Kate’s ME is more severe than mine, although unlike mine, hers has gradually improved over time, from the point where she was bed-bound a decade ago to now getting out of the house a few times a week.

We have my son a couple of days a week, and while our day to day existence remains a challenge, we’re doing pretty well, all things considered.

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