January 2004. I got out of bed and felt shooting pain deep in my right glute. Aged 12 I called this leg pain, as I was embarrassed to call it pain in, well, my bum. I went to my friend James’ birthday party to play badminton, and found every time I had to run I was getting this sharp pain.
2 weeks later this had evolved to pain so severe I had to get picked up from school as I was paralyzed, quite literally, in pain. My dad had to carry me to the car to go to the GP who sent me to hospital. Some blood tests and an x-ray showed there was nothing abnormal, and after 24 hours in a hospital bed I found I could just about walk again and was discharged.
This is how my story of Ankylosing Spondylitis started, and it would take close to 10.5 years before I got diagnosed.
This pain would come and go over the coming years, but the one thing that never went away was the pain I would get when trying to run, which eventually led to me being unable to run.
Understandably, this significantly affected my childhood. I still have my under 11’s cricket trophy in my room as it was the last sporting achievement I had before the pain took over my life.
Aged 13 my dad was diagnosed with gastric cancer, and this was when I took up road cycling, which was my outlet for the pain and anger I felt. 6 months later he passed away, but I still remember a few days before the palliative morphine took over, he promised me we would get this pain sorted so I could get playing sport again.
Sadly, this didn’t come to pass. Although I had cycling, struggling to deal with the grief of losing my dad led to me requiring anger management and bereavement counselling. This was all exacerbated that I was a teenager, unable to do a lot of the things that I wanted to do.
I’m sure you can appreciate, if you’re unable to play football, rugby, cricket or any other sports, you’re hardly going to stand out in the cruelty of secondary school. Remember, this was back in 2006, the year Floyd Landis won, and was quickly stripped of his Tour de France title for doping. Cycling was not the sport it is now in the UK!
Moving to 2009, I found that the severity of the pain in my glutes would fluctuate, so sometimes I could do gentle running. To do this, I had terrible running technique, but it reduced the pain. It was, again, a way to express frustration at the physical, and psychological pain I was in. I entered my first half marathon (The Great North Run), raising money for my local hospice. I hobbled round in 2hrs 12, and found I was hooked to my hobbling version of running.
I repeated the GNR in 2010, on 2 weeks training after suffering from a flare up and a mysterious stomach virus that left me struggling to eat a thing for month. It led to me starting medical school in Cardiff as a very lean 18 year old. I was 8 stone if I remember correctly, and 5’11”!
My first year brought the fairly standard events. A lot of socialising, a lot of big nights out, and sports teams that didn’t require me to run, as it still wasn’t a strong point. However, it was also in my first year that the pain seemed to finally abate. It was also at this point where my Ironman Journey would start. 7 years after the mysterious pain had started, and, dismissed by doctors as nothing, it seemed these ‘growing pains’ had finally stopped.
I was struggling for inspiration to revise for my first year exams, which led to me youtubing ‘inspirational videos’, and a video called ‘Ironman Triathlon Inspiration’ came up.
It showed crazy people swimming 2.4 miles, in open water, with THOUSANDS of other people at the same time!
And THEN, can you believe this, they cycle 112 miles. 112 miles! Madness. Who on earth cycles 112 miles! And the video showed people throwing up on their bikes, collapsing on their bikes due to exhaustion, and then kept on going. What sadistic lunatics!
And then, then they run a marathon. After all that, the nutters run a marathon. And in this video there’s a man, unconscious at the side of the road. But then, he comes round, he eventually gets back up, gets walking, gets running, and he finishes this monstrous ‘Ironman’.
I had never seen anything so sadistic, appalling and utterly merciless in my entire life. And I was infatuated with it. I watched video after video after video of Ironman. A few weeks later I entered the Leeds triathlon, my first ever triathlon.
I then got a place in the Great North Run, which was a week after. Then, after seeing my mum run a 5k, I decided that that was a good excuse to enter a marathon. And heck, I entered the Cardiff half marathon which was the next Sunday after the Liverpool marathon. I called this the ‘Enduro Tour 2011′ (4 races in 5 weeks), where I raised £1500 for Cancer Research UK.
I completed all my events (just about), and was on top of the world. I was a triathlete and marathon runner, by the age of 19. I had passed all my resits and entered my second year of medical school. Everything was going so well.
Then, a couple of weeks after the Cardiff half, I started to notice the pain in my glutes again, this time, coupled with low back pain, although this paled in comparison to the glute pain. I was filled with fear, thinking this had passed, that it was only growing pains.
This flare up (I was still being told there was nothing wrong with me by GPs at this point), would last 2.5 years, and led to 2 years of being on anti-depressants, as my love of endurance sport, particularly running, had been snatched away from me.
My GPs treated me as a malingerer, as I kept on going back, complaining of this paralyzing pain. Often getting so bad I would struggle to even make it to the loo, which my room was next to.
I had to deal with the stress of my course, and the pain, and the depression that had come from it.
Sadly, my doctors did not see the pain as a cause of the depression.
Eventually this led to me begging a GP to refer me to a specialist as I told him, ‘A young man like me should not be in pain like this, for so long. Something HAS to be wrong’. I was told that the best he would offer was NHS physio, which had a waiting list, even though I had been receiving private physio for months already. I was so desperate; my mum helped me to see a spinal surgeon privately, as recommended by a physio I was seeing privately in Cardiff.
This led to me receiving facet blocks (injecting steroids and anaesthetic into the facet joints), which didn’t work. A year later I had the facets ablated. Which also didn’t work.
By this point, I’m 21, finally off anti-depressants, and seeing my spinal consultant’s registrar a few months after the op (in the NHS, all my ops were done NHS, but the initial consultations were private). Just as the registrar is sending me off, having given me advice on chronic pain groups and such, he asked as I opened the door when the last time I’d had an x-ray was.
12 years old I told him. A look of utter shock crossed his face, and he asked if he could do one more quick examination on me (this was the first time he’d met me as a patient).
A quick check of how much my lumbar spine flexed, and how much my chest expanded was found to be far, far less than it should have been. I was sent to x-ray, and results came quickly back. Looking at my spinal x-ray, even with my limited 3 years of medical knowledge, it didn’t look too great.
“I think you have a disease called ankylosing spondylitis. I want to refer you to rheumatology”.
For the first time, in 9.5 years, I have a potential diagnosis, rather than being diagnosed with a symptom (GPs always felt it was sciatica).
A couple of months later I was seen in rheumatology, where I undertook more blood tests than I knew were possible, x-rays, a full spinal MRI, and a few months of waiting. Around March/April 2014 I was finally diagnosed with AS.
I rejoiced. Many could never understand why I was so happy with such a tough diagnosis. But to me it was simple. The pain had a name, it had a face, it had the potential to be controlled. I’d never had such a luxury. My life seemed to be on the up.
A few months later I started Anti-TNF. I was terrified, simply because I knew this was the best treatment there was, and I was terrified it wouldn’t work, just like everything else. After a month of being battered by side effects, I took my first tentative steps in running again…
And then I tried a bit of cycling…
And a bit of swimming.
I was pain free, my glute pain, for the first time in 10.5 years, appeared to be gone. In fact, it was sacroiliitus all those years, and on MRI/ X-ray mine looked knackered. But I could run again, and I felt amazing.
My back pain still remained, but becoming active meant I felt in control, and it was much more bearable. I found I was running week after week, and the SI joint pain seemed to be staying at bay.
I wanted to train a few more months before entering Ironman. The race that had kept me going during those flare up years, riddled in depression. Ironman became an obsession, and a love.
And typically, entries came out far sooner than I was comfortable with…I bought my place.
I didn’t know how long the enbrel (etanercept) injections would work, or if they would work for any running more than a mile or two, but I took the risk, because getting a place once they’d sold out would be impossible.
I was also around this time I got twitter, found NASS, and the wonderful Gillian Eames introduced me to Raj, Gerry, and Nathan. And through these gentlemen I would find more AS sufferers, who would become my backbone throughout the next year, training for an ironman, whilst also revising for my medical finals (I’d somehow made it into my final year at this point).
There were so many ups and downs. I’m sure those who followed me on twitter found me to moan an awful lot for someone who had ‘inspire’ in the user name! Some days the back pain would leave me suffering on the ward, and then unable to train. Other days I’d feel great.
But eventually, I got to Ironman race day…
It had torrential rain. It had incessant head winds, with the most brutal climbs, and the run saw me overcome with abdominal pain that had me keeling over at the side of the road by 8 miles. But I bloody well finished it, because out there, every drop of pain I felt was nothing compared to the years of AS pain I’d suffered. The years of being told there was ‘nothing wrong’ with me.
I am proud to call myself an Ironman.
But most importantly, I became an Ironman in the name of NASS, for all of us who suffer from this relentless disease. Many AS sufferers will be like me in my early 20’s, barely able to walk. But for every step we take, we win a small battle.
And trust me, I am incredibly grateful for every single swim length, pedal stroke and run stride.
PS, I graduated as a doctor 2 days before Ironman, hopefully I won’t be seeing any of you in a hospital any time soon!