A massive THANK YOU to Maximum Mileage athlete, Marcus Weedon, for sharing his story on living and Running with Ankylosing Spondylitis, a long-term back disease. Have a read of his quite inspirational words below!
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 suffer from axial SpA (AS) but I’m much older (just about to turn 49). 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, to share my story with some of the younger people living with axial SpA (AS) to give them some guidance and hope.
For those who don’t know what Ankylosing Spondylitis is, It’s a painful, inflammatory, progressive rheumatic disease, mainly of the spine and as well in my case, the vertebrae fuse together, for what I can only describe as being similar to limescale developing on taps over time.
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 prevent 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, drank my fair share 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 2011 I started to run once or twice a week, 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 any more running for a week! The recovery took so long… That was a lesson on the 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, 3 years in a row, 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 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 meetups 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 the days. It’s quite normal for me to suffer after a long or fast run and then recover for a couple of days before I can come back to my training.
My motivation is to not let AS beat me, in fact, it’s for me to beat my AS by continuing to move, since increasing the running I have gone a bit nuts and I set myself challenges which are for someone with my condition very challenging, luckily I’m hugely competitive with others and myself so I always achieve!
Some of these achievements are:
2021 for what has been probably the worst time for many, lockdown was a blessing for me. I set myself a target to run 2021 miles for the year which I’m ahead of. In May I took part in a charity team race where we had to run 6 miles each day, I decided that If I was going to raise any money from my friends then I would need to run much more than this, as this was almost normal, so decided to do 7 HM’s in one week, they weren’t all continuous or in one go, but when completing this I then continued and pretty much ran a HM every day for May clocking up 705km for the month
PBs wise over the last few years – I broke my Half Marathon PB by over 3 mins 1hr.27 in 2019, 10k broken by about 2 min and now 38.56 (2020) Virtual, after years and years of trying to get under 40. Then there is the 5k (2019) in 18.21 which was about 30 secs quicker than the 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 2019 & 2021 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 events) but scored highest out of all that took part in our club and have also been awarded another award for services and motivation to the club and members, which was a total surprise.
On top of that this year I was astonished to be award ‘Runner of the Year’ for the crazy running/achievements which included the May Madness, hosting and running in 1 virtual running 48 relay event against another hospitality team, plus captaining the Metros team in a similar event x 2 whereby smashing out a 9-mile run in 1 hour at 4 am, running an 18.47 5k on a track in April, running 3k in 10.46 in May at the track event, running a 5.21 1 mile challenge pretty much 2 times this year.
Strangely this award I had worked hard for before and thought I would have been in for a good shout the previous 3 years but when I least expected it, look what happened!
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. A 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, 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 about running with ankylosing spondylitis I will be able to inspire anyone with axial SpA (AS) or indeed anyone who has any disease, condition, illness or injury. I want to let you know that you’re not alone, you can find the support you need out there if you are finding it difficult to cope by 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!