My name is Mark, I am 24 years old, and during the summer of 2019, I was diagnosed with axial spondyloarthritis, also known as ankylosing spondylitis. Everyone seems to be writing a blog these days, so I thought I would give it a go.
I have thought about doing one for a while, but never thought anyone would like to read it. However, it’s got to a point where there are so many thoughts in my head, it’s about time I got some of them down. This isn’t going to be some sort of inspirational post where I tell you all that I’ve overcome my illness and now I’m thriving, I am unfortunately very much still struggling. This is a bit like those infuriating autobiographies that sports people write even though they’re only two years into a professional career (unless you’re Ben Stokes, he can do whatever he likes). This is for me to air some anger and frustration, and maybe let people know that they’re not the only ones struggling.
For anyone reading this who doesn’t know what axial SpA (AS) is, it is a form of inflammatory arthritis that attacks the spine, pelvis, heel, eyes, bowels, and a load of other things. If this sounds horrendous to you, then that’s because it is, and it doesn’t stop there. If the inflammation remains uninterrupted, it wears away at the tendon attachments that you find attached to bone, and the healing process results in these flexible tendon attachments being replaced by calcium deposits, and can eventually lead to fusion of the spine and sacroiliac joints. Sound bad?
Inflammation of the front part of the eye, called anterior uveitis, can badly affect your vision if left untreated, and inflammatory bowel disease, from what I’ve heard, is probably the worst of them all. Fortunately, not everyone gets all the symptoms and comorbidities, and an early diagnosis can help prevent these things happen or lessen their impact if they do. But even an early diagnosis may not bring back the life you had previously.
So where did it all start for me? I had tendon problems in my ankle and behind my knee in my early teens, but they could have just been injuries. I also had something called reactive arthritis when I was 15, which caused my knee and wrist to swell up as a result of my immune system’s whacky response to food poisoning. This came back the following summer, but seemingly without a trigger.
After this, groin and back pain followed when I was 17, but it was minor, and it didn’t stop me from playing back to back hockey games on a Saturday. I was in the gym 3 times a week, doing mostly cardio, playing a lot of hockey, and playing in the 1XI at my local cricket club. I had a summer job, and then off to university.
I was mostly fine at university, other than a weird moment of horrific back pain whilst dancing to S Club 7 at freshers’ ball, which resulted in me throwing up from the pain (and alcohol) and fainting.
It took me 5 years to get my answer to this and I’m not sure it’s the one I wanted.
In my first year of uni, I somehow managed to get into the 1XI of the uni cricket team, and it was probably the most fun I have ever had playing sport; I am still gutted that a shoulder injury stopped me doing this in my 2nd and 3rd year. I picked up hockey again in my 3rd year and loved it. As a 20-year-old, I was normal, active and sociable.
Even when my groin and back pain returned in 2017/18, I didn’t take any medication. I just thought I was weak, so saw multiple physios and kept exercising.
Eventually I got fit again as I graduated and started playing cricket again in June 2018. The next few months saw improvements in my strength and mobility. The odd flare up followed me, but a combination of gym, swimming and pilates got me to the end of 2018 in good shape. However, while back in Southampton visiting my girlfriend in February 2019, I woke up at 3am in agony. I didn’t feel anything the night before, the pain in my back was sudden and agonising. I spent about an hour writhing around on the floor before I had to wake up my poor girlfriend to ask where the painkillers were.
I struggled for another 3-4 days, before being put on naproxen, which immediately made me feel normal again. I haven’t been off drugs since this point.
The naproxen worked for a while, but just as I was moving to Didcot to start my new job, it got worse again. I had an MRI scan privately about a month before then, which showed some minor disc issues, which became the problem for a couple of months – another misdiagnosis to add to the list.
The pain got worse and worse as I exercised less and less, until one weekend the pain subsided and suddenly I had a very red eye. It was extremely painful, but thinking it was just an eye infection, I left it for a day.
It was only when I woke up and my vision was blurry that I rushed off to the eye hospital.
The eye doctor took one look at my medical history and questioned why no one had picked up on my back pain before. An afternoon of stinging eye drops and an eye injection where the anaesthetic didn’t work followed, and I was sent on my merry way with steroid eye drops.
However, my eye got worse later in the week, and I ended up spending 3 days and nights in hospital having hourly eye drops through the night (apologies to the nursing staff for having to put up with me, I was very tired). To top this all off, I was discharged the day before my birthday. I was completely drained, and the combination of severe inflammation and lack of sleep left me with a complete loss of appetite and incredible fatigue for the next week. Fortunately, my back pain subsided, and the cricket world cup was on. I was signed off work for an extra two weeks, so I had the pleasure of sitting in my parents’ living room watching cricket. It was heaven.
With axial SpA(AS), you know before you know.
Anyway, there I was, returning to my office job after 3 weeks off, life completely turned upside down, flashes and floaters in my eye from the trauma, and expected to go on living life as normal. It was surreal. Luckily, I only had to wait another month for a rheumatology appointment, where I was told what AS is. When someone explains what axial SpA (AS) is, all your symptoms start to make sense. Axial SpA (AS) symptoms get better with movement, which explained how in my 4th year of university, I could go from being unable to put my socks on in the morning to running around a hockey pitch in the evening. It explains why 20 minutes of high intensity training on an exercise bike made me feel better, and why I felt rubbish in the mornings as well as after rest.
Fortunately, my medication was changed to a different anti-inflammatory quickly, and overnight the pain almost disappeared – it was life changing.
I started doing strength training again, albeit in very small steps, and swimming became even easier. I had some pain in my groin and neck/shoulders, but this was well managed with swimming and I was waking up pretty much pain free. I was put on an immunosuppressant in November 2019 in order to get more of the pain to subside, and to hopefully prevent the uveitis returning. I was struggling with fatigue for a month or so, and some stomach pain which turned out to be stress-related IBS, but the pain had almost vanished, so I was happy.
However, 2 weeks before Christmas I had a major flare up. I tried exercising through it with running and swimming, but this level of pain was horrendous, and I only just about made it through Christmas, with a combination of exercise and hot water bottles. To be honest, I am only marginally better now than I was in January. I’m probably fitter and stronger, but the pain is at a similar level and my mental health is worse. I came off the first immunosuppressant in March and moved onto a different one. These drugs are relatively new and have revolutionised the treatment of many different inflammatory conditions, but not everyone responds to them, including me. Well, when I say don’t work, they probably work a bit, but I still can’t run and struggle to lift things.
Lockdown was immensely tough. But, then again, it was rubbish for everyone, so I won’t say too much about it. Just please wear a mask. And wear the thing properly.
I am now 15 months into my diagnosis. Honestly, I feel worse than I did this time last year. I thought it would all be up from there. one of the first things I asked about at my first appointment was about playing sport. I was ecstatic when I was told that I still had a chance if the treatment worked. By October 2019, I thought I genuinely thought I would be able to feel relatively normal again. But right now, I feel further away from it than I think I ever have. Axial SpA is relentless, and when it gives you a good day, it will just as easily make the next few weeks hell.
I have tried swimming, yoga, strengthening, running, pilates, somatics, the Wim Hof method, and supplements. I even tried not drinking for two months. I have been on 4 different types of medication, and it is very hard to see the light at the end of the tunnel, even if my rheumatologist tells me it’s there. I was never the most confident person, but arthritis destroys any confidence and self-esteem I once had. Its debilitating. It weaves itself into every part of your life and tries to tear it apart.
I am better than when I was first diagnosed, but I am nowhere near where I want to be.
Maybe I just need to accept that this is my life now. Unfortunately, I hate being told what I can and can’t do, and it’s the sheer stubbornness within me that keeps me going. That, and the wonderful rheumatologists, the two physios that have helped me (thank you Dan and Rachel), Zoe Clark the osteopath who has been working with NASS during the pandemic, and Jamie Boder who has been helping me with yoga (I am practicing every day I promise!). I miss sport very much. It was somewhat bearable when no one else could play, as it meant they could join me in the misery. My love of cricket is inexplainable, as it is probably one of the worst games to play, especially when you pay to play game where you could end up spending you whole Saturday afternoon doing nothing. Its bonkers, but I love it and miss it.
Arthritis doesn’t get the coverage it should. I’m not asking for it to be prioritised above other illnesses, but some consideration would be nice. There are estimated to be over 10 million cases of arthritis in the UK, encompassing 100 different variations. Osteoarthritis, Rheumatoid Arthritis and Gout are the most common. Axial SpA (AS) affects roughly 220,000 people in the UK, but I sometimes wonder if people are being missed because no-one has ever heard of it. Its more common that Multiple Sclerosis and Parkinson’s combined.
One huge misconception about arthritis is that it only affects old people.
Two thirds of people with arthritis are under 65, and even people in their 20s are diagnosed with osteoarthritis. There are also 15000 children in the UK with arthritis. That’s 15000 children growing up in constant pain – it’s all they know. And yes, I know there are other children out there with disabilities which also need attention and funding for research, but that doesn’t mean arthritis doesn’t deserve it too. I’m not asking people to understand what this is like, how could you? It’s an invisible illness which can cause an unimaginable amount of pain. To others, I’m just the weirdo crying on the bus to work for no reason.
The advances in treatment and research over the last two decades gives hope, and the level of care I have had from the NHS is brilliant. NASS is doing some wonderful work in trying to get the delay to diagnosis from 8.5 years to 1 year and improve the level of care across the whole of the NHS through education and collaboration. There are some wonderful people out there helping, and the next few years could see great advances in treatment. I don’t know if there will be a cure, but obviously if there is one, hit me up. I just hope it’s not too late for me.
Mark is a mechanical design engineer at the Central Laser Facility, who loves cricket and supports West Ham. You can follow him on twitter here.
