The illness
Writing this blog has been a tricky one for me because many of you that know me know that I am a very private person. But from somewhere deep down inside something was telling me I needed to write it. I don’t know where it came from or why now but for the first time in 15 years from when my illness first kicked in, I feel like it’s time to share my side of the story.
I guess it’s part of my own personal therapy to try and break down the many scars it has caused me. I also think it’s because I see more light now as I come out of the darkest of times. More importantly I want to help other people out there who might be going through long term illness or troubled times. I want to show them more than anything that hope is not lost, and you can find a way through. I also want to help shine a light on chronic illness to all those people that haven’t gone through something like this. Many of which make way too many assumptions about what it can be like to live with it. This so often makes it way more difficult for the person dealing with it.
Where did it all begin?
Fitness wise I had been in the best shape of my life after just putting in my best Ironman performance at Ironman Germany. I then took a long rest period and was slowly starting to get back into training again. Then one day I felt a strange tingling sensation that started in my feet and quickly spread to the rest of my body. It felt bizarre to say the least. I then went out on a bike ride with a friend who had just recovered from a 2-year cancer battle. I really struggled to hold his wheel and I just felt completely exhausted. Deep down inside I knew something was seriously wrong.
I will probably never know exactly what caused it to come on, but two things happened very close together. In the 4 weeks leading into the first symptom’s coming on I had a chest infection. I then decided to have a flu vaccine. 12 hours after having this vaccine my nervous system went into meltdown.
Was it the virus I had or was it the vaccine or was it a combination of the two of them so close together? I will probably never know.
It’s just too big a coincidence that these things happened within 12 hours of each other. What does pain me to now know is how many others this has happened to over the years. Many have had bad side effects from the flu vaccine, some of them lifelong and completely debilitating. But the same can be said for viruses. It’s all incredibly well documented online.
None of these potential side effects were mentioned to me at the time but maybe I was very naive to think vaccines were risk free. The vaccine debate will rage on but I’m not writing this blog to knock them because I believe for most of the population they will work. I was just one of the unlucky ones.
All I know is I went from a healthy triathlete in training to someone that couldn’t walk up a flight of stairs without feeling terrible. Little did I know this would last a total of 12 years as my body just became incapable of doing any form of exercise.
It’s hard to imagine what it’s like to lose what you love doing most. At the time it seemed insurmountable. Where I found the strength to get through the next 12 years, I don’t know but it came from somewhere.
The symptoms came on gradually but got much worse over time, these were:
- Severe nausea (I wanted to throw up most of the time)
- Massive debilitating headaches/migraines that could last days and weeks at a time. I became addicted to Nurofen and on bad days I would be taking up to 8 a day
- Massive waves of fatigue
- Extreme sensitivity to noise, light & heat
- Dizziness
- Visual problems
- A feeling of being spaced out and disconnected from the world. This was by far and away the worst feeling & was a constant every day.
- Numbness in different parts of my body
- Non-stop muscle twitches (fasciculations)
- Bizarre aches and pains that would appear in certain parts of my body then disappear after a few weeks or months
All these symptoms would multiply and worsen with any form of exercise. It just became totally intolerable. If I did nothing these would subside somewhat, but we’re ever present. It felt like different parts of my body were being attacked daily. It took all the physical and mental strength I had just to keep getting out of my bed each day to go to work. When I look back, I honestly don’t know how I managed to do it.
Just to give you some examples of how bad it really got, I even found walking upstairs difficult because that was enough to bring symptoms on. Frequently when available, I would use a lift to go from one floor to the next. Even at home where I have one flight of stairs, I used to do this as slowly as possible. The thought of even swimming 25m in a pool filled me with dread.
It was terrifying to say the least.
I then spent 2 years being tested for everything under the sun. I saw every top specialist in every field and spent a small fortune doing so. When all the tests/scans kept coming back negative (most were done 2-3 times), they come to a diagnosis of exclusion.
I was told I had Myalgic Encephalomyelitis (M.E.)
Also known as Post Viral Syndrome (PVS) or Chronic Fatigue Syndrome (CFS). I was also told it would clear up in about 3-6 months by many senior Neurologists.
From what I know now this is the label they give to you when they really don’t know what’s going on. There is so much in medicine that they just don’t have answers for, more so than what they do have answers for. The nervous system is also one of the most complex and least understood areas of medicine.
I have never felt more relief when I was about 8 years into my illness when I listened to a podcast with a top American doctor. He said that for every patient that came into his practice 20% of the time they will know what is going on and how to treat it, the other 80% of the time they have no idea. It was strange how relieved I finally felt when I heard a doctor finally admit this. I saw an honesty in his answer that I think I would have appreciated hearing a lot earlier.
After being passed around from one specialist to the next for about 2 years I simply gave up with the Western medicine approach and turned to the alternative medicine path. Again, I searched out the very best in their field. I tried everything and no stone was left unturned. One top nutritional Doctor (who came highly recommended) prescribed a course of vitamins, minerals and potions to take that saw me taking nearly 40 tablets a day. I can laugh about it now because I was so desperate at the time, I would have taken anything. But as with everything else the promises made were untrue and everything failed.
I hit rock bottom.
This all happened over a period of about 4 years. Towards the end of that time, I started to feel like if I was going to be able to learn to live with this, I had to start doing it on my own terms. No one could help me or give me answers so in a way I accepted I could have this for life so had to find my own way of dealing with it.
If I was going to be able to live and survive with this illness, I made myself one promise:
‘Forget the things you can’t do anymore and focus on the things you can do & be sure to squeeze the greatest amount of enjoyment of them’.
I resolved to use the energy I had as an athlete and direct into my coaching of other people. It became less about me and more about helping others. I wanted to become the very best Coach I could possibly be. If I couldn’t do it myself, I could live it through others.
This is what saved me.
Many people asked me over the years if I found it difficult watching others swim, bike and run. I can honestly say I probably got more reward out of coaching and helping others than I did competing myself. What I missed the most was the intoxicating feeling of blood pumping through my veins whilst being out in nature, then feeling the resulting high afterwards. I never stopped thinking about that. My only frustration at times was wishing people would appreciate how lucky they are to be able to do what they do and not get so caught up in their first world problems.
If there’s one thing chronic illness gives you it’s perspective.
The other things I focussed on were my 2 favourite F’s…Family and FOOD! Spending time with loved ones was key to helping me get through this period. I’m just as obsessed about food as I am about sport. Over those years I became a pretty handy in the kitchen and some of the meals I cooked for my family during that time were legendary. Let’s just say they were the best fed family in South Wales! If I wasn’t experimenting with a new recipe, I was pouring over cookery books and watching cookery programs on TV. I could probably recite to you every Rick Stein cookery program word for word. I also used the time that I lost as an athlete to spend time finding the best restaurants in the UK and beyond. When I look back, I had some incredible experiences. This was part of my therapy, it also helped expand my waistline significantly!
I must admit one of the most difficult things I dealt with having a chronic illness with no cure or very little understanding about it was other people’s assumptions about what they thought was happening. The level of insensitivity I experienced at times was simply breath-taking. Although admittedly a lot of the time it was just due to a lack of understanding. Most seemed to take the viewpoint that because it was a more obscure label unlike other illnesses that it was all in my head or some psychological element at play (including some Doctors). This used to enrage me. I believe for certain conditions this can be the case and I’m not knocking those people at all, but for me it couldn’t have been any further from the truth.
All I kept thinking to myself was “why don’t you try and live in this body today and experience the pain and discomfort I’m feeling for one day then see how you feel about making that comment”. It’s narrow-minded short-sightedness at best. Just because a person looks fine on the outside it doesn’t mean they can’t be in a world of pain & suffering on the inside.
The result of this was I shut up shop and became more fiercely private than ever before. I couldn’t and wouldn’t talk about it with hardly anyone, not even my family. I just wanted to deal it in my own way.
Was this the right thing to do?
Looking back, I can say it was a resounding yes. We all have to find our way of dealing things and that should be respected. Some people feel talking helps, I most certainly didn’t. In fact, it made things worse for me because it reminded me I had an illness every-time someone brought it up. At times it was gut wrenching to talk about it.
I did let a few people in, but these were people that I felt wouldn’t judge me, poor pity on me but would just be good listeners. Timing was also crucial, because there are times you feel strong and can open up and talk more and others where you are feeling so weak you feel like you could quite easily shatter. It was a fine line to walk, and the strong times were few and far between.
It also astounded me how many people when you tell them what is happening to you seem to default to wanting to tell you about someone else they know who had been through an even more horrific experience. I will never forget one of my friends telling me in the first year of the illness that he knew someone who had been through something similar, and he had to give up everything. He also lost his job, parted from his wife and had been for a very long time. Honestly, I could have walked away from him right there and then and never spoken to him again. It really is astonishing how many people do this even when you tell them you have minor ailments. A game of Trump cards it most certainly isn’t.
When people are suffering the last thing they want to hear is negativity like that. It felt like someone twisting a knife into my gut. All I needed to hear was a few choice, positive, kinder words and it would have made the world of difference. The lack of sensitivity I experienced from those around me never ceased to amaze me, especially when you are so totally and utterly fragile.
If I could give advice to others, it would be to learn to be a good listener. Also don’t assume you know anything unless you’ve been through a similar experience. Being able to truly listen is one of the greatest qualities you can find in any human being. Frequently we are drawn to these kinds of people because it’s a sign high level of emotional intelligence. These were and still are the people that I value the most and are closest to me. They just get it, and you feel it, they make things just a bit easier for you rather than harder. These were the only people I could let in, but the time had to be right.
Did I crack mentally during this time?
I came close on several occasions. Thankfully two things were there to help me at that time, my best mate and anti-depressants. My best mate is a recovering alcoholic of 6 years so has been through some horrific experiences himself. But no one I know has a higher level of sensitivity and emotional intelligence as him (well most of the time ha-ha). Most importantly in that moment when I felt I was losing it I made the decision to call him. This was so important and is a lesson for anyone out there when things get too tough. He just knew what to say to me to get me slowly back on track.
There were also a few of times when anti-depressants were the right answer for me. This wasn’t an easy path to choose but I’m thankful I did it now. They helped stabilise me when I needed it the most. When my mental state improved, I gradually weened my way off them. I did those 3 times over a 12-year period and stayed on them for no longer than 6months at a time. There is absolutely no shame in reaching out and taking this help when needed.
For all the horrifically bad times I experienced during my illness I also experienced some of the best moments of my life in that 12-year period. I became a far better Coach because I realised that helping others is way more rewarding than just helping yourself. I can’t even begin to tell you the joy I felt seeing others achieve their dreams and goals no matter how big or small. I became completely immersed in coaching and how to be a better coach and was able to travel the world to work with some of the best coaches and athletes during this time.
I also set myself a very private goal of Coaching an Ironman World Champion. This goal was achieved in Hawaii in 2017 with Emily Loughnan (now Kelly) and is one of proudest coaching achievements to date. To be there with Emily and to share that journey and experience with her almost made all the suffering worth it. That moment we shared on the finish line in Kona was the stuff dreams are made of.
There were also other things that inspired and drove me on during this time. My escapism came in the great books I read, of which there were many. Most of them were about people who had endured and overcome some kind of hardship but had found and a way through. My 2 favourite books that helped me enormously through that period were ‘Man’s search for meaning’ by Viktor Frankl (non-fiction) & ‘The Count of Monte Christo’ by Alexander Dumas (fiction). The first is about a Jewish concentration camp survivor and the second is the story of a man who gets imprisoned for 20 years for something he didn’t do. Both are books of hope, they are about never giving up in the face of insurmountable odds. I drew such strength from these stories, they were perhaps the only time I could escape from what I was experiencing.
The recovery
When I think back now some of my other symptoms had slowly started to subside in the months leading into this moment. It was September 2021 and I decided to go for a 10min walk around the block where I live. What made this walk so different was that I felt good at the end of it. This was a feeling I hadn’t experienced for the previous 12 years. I just dismissed it as a one off, but when I went for a walk the next day it felt the same and I managed to double my walk time to 20mins.
For 12 years that walk had been too much for me, but I forced myself to do it a few times a week to keep myself sane. I knew I would also have to lie down for a few hours after that to let my symptoms subside.
I began to walk further and further each day. Within 6 weeks I was walking for 2 hours 5 times a week. It was a total and utter revelation. Once I reached 3 hours, I started to believe I might be able try swimming or biking again. There was no way in a million years I was going to attempt to do that at the club where I work. My poor conditioning, weight gain and general lack of confidence in my body put pay to that. I also didn’t want to be asked any questions by the people I knew at the club where I’ve worked for 23 years. I just wasn’t ready to let anyone, including my family know just yet.
So, I joined a local gym with a pool where no one knew me.
I have to say the 12months I then spent there being completely anonymous was exactly what I needed to rebuild my fitness and confidence. I will forever cherish that time because I started to do things that I never dreamed I would be able to do again. I remember how nervous I was about my first swim, it felt like going back to my childhood and starting all over again. I’m pleased to say the stroke didn’t feel too bad and I managed a whopping 8 x 25m on 2mins rest as my first session back (yes you read that correctly – 200m total).
Even more alarming was my first indoor bike session. At 60 watts my heart rate was 150bpm. Those who work with power will do a double take when they read that. It stayed that way for about the first 8 sessions or so where I only did 15-20mins. I can’t even begin to tell you how hard that felt.
My first attempt at running was nothing short of horrific. It lasted 20metres before I felt my knees were going to snap and my discs in my lower back were going to explode. I had never had knee pain in my life, now the pain was excruciating. This happened every time I attempted even the shortest of runs. This really crushed me because it really felt like I would never ever be able to run again.
My lack of conditioning and muscle atrophy was astonishing, but what can you expect when you have literally done nothing for 12 years? Everything wastes away and I had gotten 12 years older in that time. I also experienced so many of the issues people have with significant weight gain. My joints were incredibly painful, I had high blood pressure and my resting HR was 85bpm. I had lost 5inches around my thigh girth alone. My weight pre- illness was about 70kgs, now it was 89kgs.
One of the people who then helped me most in my recovery was my brilliant physio – Nathan Carter. Nathan was pretty much the only person I told about what I was doing. His advice was sound and clear, you need to rebuild body strength first before doing so much cardio as I kept getting one injury after another. The main problem was my mental strength was good, but I just didn’t have a strong enough body to back it up.
Then the work in the weights room really started. Nathan introduced me to an extraordinary Strength Coach who helped me rebuild my body and my confidence. His name is Jack Healy. The sensitivity, care and attention he showed when working with me was astounding and each time I saw him my confidence in my body grew. I have so much to thank both of them for.
To give you some context of where my body was at, I attempted to do 10 body weight only squats and nearly collapsed at 5. I couldn’t even deadlift the Olympic bar because it was too much for my lower back. Through trial and error, I worked out where my baselines were, it was shocking to say the least. The hardest part was letting go of the athlete I used to be and expecting the same level of progression as before. That athlete was gone completely. I had a new body, far less forgiving and I had to listen to it. This was far from easy, and I had to reach for new levels of humility.
It would be a further 12 months of doing 3 x strength sessions per week before my body was ready to run again. I started running again after 14.5 years in June 2022 when my weight was 75kgs, my blood pressure was normal, and my resting HR was 45-50bpm.
Over this recovery period of 2 years many tears were shed out there training as I did things I never ever dreamed I would do again. The longest swim I built up to was an 8km pool set and the furthest I managed to bike was 151miles to Portsmouth and back. I also did a solo half Ironman one Saturday to see if I could. This took me about 7 hours when I was closer to 4:30 back in the day. I also managed an 18mile slow run/walk a few weeks ago. I guess I just did all of this to prove to myself that the illness was gone but boy do I like the long slow stuff now. A very good thing because the speed I once had is all but gone!
I have focussed primarily on just aerobic training in this time as my body just wasn’t strong enough to cope with any form of interval training but that is now slowly starting to change. I remember my old Coach saying to me to develop a good level of aerobic fitness takes 5-6 years. I honestly believe this is true for most athletes. The only difference is most will start from a higher baseline than where I was at. I’m ok with this though and I’m in no rush. I always made a promise to myself that if I ever came out of the illness, I would just enjoy training for training’s sake rather than for the competition. I’ll leave that but live that through my athletes for now.
Someone commented the other day that I’ll finally be “on show” again at my training camp in Lanzarote in a week’s time. After what I’ve been through that’s the last thing you want to hear. I’m clearly not the athlete I was and if you think you can rebuild the body quickly in 2 years after 13 years of no activity you are very much mistaken. What I will be there for is to start that process of rebuilding and using others to push me on to that next level. It will be the first time in 15 years that I feel able to exercise with others and I’m going to enjoy every minute of it, even if they do make me suffer this time!
Why did it go away?
I honestly have no idea.
All I can tell you is I just went for a walk one day and it felt different. And for all those people that ask if I did something different, I can categorically say I didn’t. I just didn’t give in and tried to live my life in the best way I could. I got lucky pure and simple.
What did illness teach me?
So many things I am grateful for:
It taught me to never take anything for granted.
It taught me the greatest reward in life comes through helping others.
It taught me to never take the people that love & care for you for granted.
It taught me to live in the moment and cherish the good times.
It taught me how to show a greater understanding & empathy towards others.
It made me a better Coach.
It made me a better person.
What does the future hold?
Who knows.
My illness is still quite a sensitive subject because they were the darkest, loneliest years of my life. I think that shadow will always be with me. I still feel at times I can talk about it and other times I’d rather not. I prefer to look to the future now.
All I know is I will take each day as it comes from here on in and will marvel in the fact that I can now do what I love most again. Maybe I’ll even start to document the journey back through an Instagram page or through my blogs. I find it easier to write about myself than talk about myself that’s for sure!
There might be one more journey left for me as some kind of athlete so let’s see where this old body can take me. I
f you made it this far thanks for reading and feel free to pass onto others. I would always want to be there for anyone experiencing something similar.
My door is open.
