Back in February 2018 I wrote the below blog which received an amazing positive response from most, so I thought I would post it again with a few alterations. My current physio said that it was a great write up and that it should be shared to inspire those who have recently been diagnosed with axial SpA (AS) or to provide continued encouragement to those who are in need of some enthusiastic motivation from someone else living with axial SpA (AS) whilst also providing a further update since the last post.
A couple of years ago, whilst out running with a group of friends, I got chatting to one of the younger men in the group. I asked why he joined and what he hoped to achieve. The 25-year-old told me his story and to my surprise he had been diagnosed with ankylosing spondylitis about 6 months ago. He was advised to take up exercise, which he did a little of, but wanted to do more and get fitter in general.
I also live with axial SpA (AS) but I’m much older (just turned 47). Coincidently I found out about my axial SpA (AS) when I was the same age as him – so I shared my story with him. He was genuinely amazed and told me about ASone so I could share my story with some of the younger people living with axial SpA (AS) to give them some guidance and hope.
I was diagnosed with axial SpA (AS) in 1998. Back then I started to develop severe back pain, but doctors continually said that I was suffering from Sciatica. Different kinds of treatments and drugs didn’t make the pain go away. Eventually I visited a rheumatologist for tests which revealed I had a disease called ankylosing spondylitis. I had no idea what this meant and how it would affect me in the future.
Once diagnosed I spent 2 weeks in a hospital undertaking intensive physiotherapy. I felt a bit like a guinea pig: students were attending my physio sessions to learn more about the condition and how to treat it.
I felt lucky in a way that it’s not a disease that will kill me but given the opportunity it can make my life a severe painful misery. To be honest, occasionally this is the case!
One thing that does prevent it from getting worse and helps to control the pain is, believe it or not, regular exercise! It helps preventing my spine from fusing together, it keeps me flexible and helps to control the pain.
Back in my 20s, I didn’t move a lot and smoked about 30 cigarettes a day (which is advised to give up as this enhances the condition and it’s not good to smoke in general). Because of my diagnosis I had to change this lifestyle quite rapidly.
After the physiotherapy course I continued the healthier exercising regime, but the pain wasn’t going anywhere. I had more better days than before, but it still wasn’t enough. Some days I couldn’t even get up from a chair due to the pain being so extreme.
In 2010 I started to run a lot, cycle to work and joined a gym. Some were saying this must be a mid-life crisis, but this was my way of controlling the pain.
After some time of being more active, the pain started to be much less, but the stiffness was still there. I did notice that winter training had some great effects on my mobility and pain levels, it must have been the temperature that helped the joints. However, after I knocked out a 30k run one cold, Sunday morning, I couldn’t do anymore running for a week! The recovery took so long… That was a lesson on importance of pacing, which I learnt the hard way and as well that my body was hugely different compared to other runners.
In the next couple of years or so I increased my running. Mainly because I got a London Marathon place thanks to a charity and I managed to raise £10k. I hadn’t mentioned to anyone about my axial SpA (AS), I just got on with it and tried to continue as normal.
Now I’m addicted to running, cycling, fitness, yoga and gym. No one would notice that I live with axial SpA (AS), it’s not something I normally share. However, I thought about it and decided I should, as there are many other people around the world (we are talking millions!) who live with this life-long condition.
In 2017 I had the confidence to join a running club – Metros in Harrow, London – which I have to say was the best thing I have ever done for this condition and my fitness. With club’s regular meet ups and my own running sessions I was getting around 50-70 km a week!
You would assume I was doing really well and I wish that was the case. The truth is I was still in pain most of days. It’s quite normal for me to suffer after a long and fast run, and then recover for couple of days before I can come back to my training.
My motivation when I wrote this original article was to be able to keep running as much as I did then. I really want to run 2000 km in total that year, sadly that didn’t happen and only clocked up 1806, I fell short again in 2019, But thanks to the lock-down of 2020 I have already managed to run 2158km to date. Sadly though as I write this I’m injured due to tearing my left calf so I have been out for 3 weeks with another 2-3 to go before I continue on my new target 2020 MILES.
Some of this year’s achievements are:
In March, after seriously considering running a marathon again I took on a hilly 20 mile race which I completed in 2hr 30mins but by half way I started to get horrible pains in the glutes which then run down to my calves, which happened to be the same horrendous pain for many years when I drive long distance. I remember clearly wanting to give up so many times and stopped to walk before pushing on once again. I obviously collapsed in a heap at the end holding my lower butt cheeks (a beautiful sight no doubt). Thus totally reminding me that running this distance isn’t my thing and it’s not worth the pain or punishment it causes.
Back in June I raised some money for a charity where I decided to run as much as I physically could during 1 week and clocked up 132km – which included 5 half marathons – Of course I was dead on my knees by the time I finished the last run.
PBs wise – since the Feb 18 post I have done quite a few – I broke my Half Marathon PB by over 3 mins 1hr.27, 10k broken by about 2 min and now 38.56 after years and years of trying to get under 40. Then there is the 5k in 18.21 which was about 30 secs quicker than previous.
There have also been plenty of track and field events also as my running club takes part in a Vets League – so I broke a record in the High Jump for my age Group for my club, funny as I had never done before and took to it quite naturally. I went on to win an award for taking part in the most events (3000, 1500m, 800m, 400m, 100m, Javelin, Hammer, Long Jump, High Jump, Triple Jump Sadly I didn’t win any over the 4 separate events) and scored highest out of all that took part in our club and was also awarded another award for services and motivation to the club and members, which was a total surprise.
You can probably tell that I am someone that will do anything no matter what and I don’t let axial SpA (AS) dictate what I can and can’t do. I’m in control (most of the time).
However, it’s not all about the competition, awards and beating the records even though they are very motivating for me. The large part of it is that I just want to stay fit and not endure the pain when I’m not exercising.
And trust me after all these years the pain is still there, but I can’t imagine what it would be like if I didn’t have running, exercise or my running friends around me to continually motivate and inspire me.
I appreciate that everyone is different, and axial SpA (AS) comes in many forms and affects people differently, but if I could give some advice to anyone who has been living with axial SpA (AS) or just have been diagnosed, I’d say, don’t give in!
Keep moving and believe you can do anything you want to do. These are my methods of being in control of axial SpA (AS) (as much as I can!). I know many people who do the same as me, but I also know it might not be for everyone. Find your way and intensity, but again, don’t give in and keep moving!
20 years ago, I was a young guy but unfit, lazy and heavier than I am now. Who knew that axial SpA (AS) would be a blessing in disguise. It turned out to be my driver and motivation to keep strong and fit.
I hope that by writing this article I will be able to inspire anyone with axial SpA (AS). I want to let you know that you’re not alone, you can find the support you need out there, but the only way to control your axial SpA (AS) is to do something about it yourself! Don’t let it get the better of you and keep moving!
Axial SpA (AS) hasn’t beaten me, it made me fitter and stronger, let it do the same for you!
Marcus is a serious businessman and a serious runner. He battles his axial SpA (AS) by being very active and not giving in to his condition. You can follow his progress on Instagram.
