Published in InterAction 67, Spring 2009
Nicknamed ‘The Duracell bunny’ by his friends, Tim Donovan lived life in the fast lane until M.E. forced him to put on the brakes. Here he tells us his journey from complete exhaustion to getting back on his beloved bicycle.
In 1997 I was working very long days at Ford Motor Company in the quality department. My role took me across two countries, flying to Germany each Monday at 7am, returning to England Friday 7pm, working 10-12 hours each day. I ran five-six miles in the evenings as a way of switching off and socialised with work colleagues afterwards.
After two years of solidly burning the candle at both ends (and a bit in the middle), I literally ran myself into the ground. I started to feel very unwell, I couldn’t sleep, drive a car and was painfully thin. With no change in diet, I lost almost a stone in weight in a matter of weeks. I had numerous blood tests that only revealed low white blood cells count.
Heavy tired arms and ‘brain fog’ made driving a car very difficult; I felt that I couldn’t concentrate enough to be capable of driving safely. Bizarrely, given my daily exhaustion, I was unable to sleep as I found that my mind raced each evening – I felt I was in a vicious circle.
In March 1999 aged 24, my local GP diagnosed me with either Post Viral Fatigue Syndrome or M.E. It took several days of reading about this and similar illnesses on the internet to understand what I was facing. Most of the literature I read was quite bleak and I found it very challenging not to lose heart!
The main challenges I faced were utter exhaustion, a complete inability to sleep and shaking or trembling. This was difficult for me, as I had spent my entire life rushing around, always busy.
The worst symptom personally was feeling ‘dumb’; it was like my brain had slowed down. I couldn’t remember things, couldn’t get words out and had regular mood swings as a result. It was very frustrating when I couldn’t remember a specific word that would explain exactly what I wanted to say (especially when people would try to help by finishing my sentences for me).
A cloud over me
Another surprise was how this affected my family and partner (an area that I think people forget). I simply didn’t consider the impact my illness would have upon them; to some extent I was in a survival mode and had been quite selfish (sleeping when I had to, accepting help with groceries, worrying about how I was going to get better – which in itself I found could actually stress me more). My mother and twin sister were very worried but supportive. My father was especially patient with me as I ‘unloaded’ all my issues and worries on the phone.
I often found it difficult to follow advice along the lines of “Tim, please rest!” because after I had rested, I would feel momentarily better and wanted to do something out of either frustration or boredom. I found periods of feeling slightly rested were rapidly followed by much longer periods of exhaustion and without much provocation.
My partner at the time did much research to help both of us understand how we could help ourselves. Over a long period of time the illness that was originally a cloud that hung over me, started to get her down as well.
The reaction of my friends was unexpectedly split. Some were supportive and helpful, reading up for themselves about what M.E. was (rather than take up what little energy I had to quiz me about it); others however couldn’t ‘see’ the illness so simply couldn’t accept it as anything other than psychosomatic. This generated feelings of guilt as I felt as if people were judging me based on what I was able to do.
For years I still felt almost embarrassed or guilty to discuss M.E. and how it has affected me with people I didn’t know that well. I found it difficult to explain in a way that people could understand. Bizarre as it may sound, I often felt that people I spoke to left our discussions thinking that I had somehow ‘talked myself into’ being ill!
With hindsight, I had been struggling with illness for a number of months prior to this diagnosis, not realising how much my activities were damaging my immune system. My GP referred me to a specialist in Essex, who I saw for almost two years following a graded activity program supported with prescribed medication. This approach helped me and within a year I was much better. However, the improvements were not permanent and in 2001/2002 I went back to the GP still struggling with chronic fatigue. I was then referred to an M.E. specialist in Tilbury, Essex, who I saw from 2002 onwards.
After the thick end of ten years and a lot of rest, medication and dedication on my part to follow a strict regime, (rest and very structured use of the energy I had; no living on tomorrow’s energy!) I am now better. My last appointment with my specialist in April 2008 was an emotional affair for me, both one of reflection (of how far I had come), and also positivity.
Achieving a childhood dream
After M.E. had kept me from riding my beloved bicycle for so long, it seemed only fitting that I would go to France with my long-time exercise buddy and best friend Jon, to have a go at the French Alps as a sort of cycling pilgrimage. I nudged a few friends in the office for some sponsorship, some of whom had seen me go from being quite unwell to essentially being more active than many of them are now. They very generously put their hands in their pockets and I raised about £1300 to help out other people with M.E. This money went to the ‘Get Well Club’ that is run by the patients of my specialist.
My cycling trip was essentially following in the footsteps of many of my Tour de France heroes. I went up Col du Glandon (1924m), Col de la Croix de Fer (2067m), Col du Telegraphe (1566m), Col du Galibier (2645m) and the infamous 21 hairpins of Alp d’Heuz (1860m) … difficult to get your heads round the heights unless you’ve been there!
I had met my cycle companion Jon 16 years ago at Leeds university and had done everything with him ever since: music concerts, partying, running, cycling and of course relaxing. He saw me through the fittest I’ve ever been to the most ill I’ve ever been. Having Jon there was an additional reminder of how far I had come in terms of kicking the illness.
Putting my sense of satisfaction at completing the rides into words is challenging (especially as engineers aren’t known for their creative writing skills!). Imagine something or someone that you look up to and admire, like a professional sportsman on television, an icon, a rock band, anything that stops you in your tracks with awe or admiration. Focus on that image, imagine that moment and then blink to find that you are right there with them, doing the activity yourself. You’re part of it, the sights and sounds, the lights, the air, the clothing, your breath… absolutely anything and everything involved in the feeling just heightens it.
To achieve something that I never dreamed I could is an odd sensation and it took a while to sink in. This is especially true as I have spent a number of years controlling my efforts and energy levels with thoughts of “I can’t do that!” in the back of my mind.
Learning from my illness
Some of you can no doubt empathise; but I’d also wager that all of you are capable of achieving your dreams too, even those you haven’t yet thought of! There is nothing special about me at all, other than I have learned from my illness and have come out of the other side with a healthy appreciation of the value of life, plus I’m maybe a bit more organised.
Since the ride I have had no after effects, the cycling event has left only fantastic memories and a lump in my throat for completing a childhood dream.
I think it’s important for all of us to reflect on both ‘ups’ and ‘downs’ – the ‘ups’ to celebrate and the ‘downs’ to learn. You don’t actually learn anything but arrogance unless you make mistakes.
A singer I love once sang “how d’ya know where you are going if you don’t look back?”. I guess for me this is something I seldom do; perhaps we are all poor at it. For me, looking back from now through healthy eyes to a time when I was so unwell yields mixed feelings. Sometimes it makes me sad at the time I lost, sometimes happy at what I can now achieve.
However, the thought that never changes is perhaps a surprise… I would do it all again! I have become a more organised, more thoughtful, less selfish, more balanced person as a result of my journey. That’s not to say I ever thought this whilst I was unwell of course, just that once you get through to the other side, the view is much better than you would ever think while living with M.E. I sincerely hope you all do, and I know you all can complete this journey!
My full cycling journey is available to read online (click ‘Alps Blog.pdf’).
View a pdf of this article