It’s not just painful joints: my journey with psoriatic arthritis ahead of Ride London 201930 July 2019
On Sunday 4 August, tens of thousands of cyclists will take on the challenge of riding 100 miles from London to Surrey as part of Prudential RideLondon.
Among our team of 70 fundraisers is Tom Gallagher who was diagnosed with psoriatic arthritis in his early thirties. We spoke to him about why he’ll be donning a Versus Arthritis cycling vest and why taking part means so much to him.
I had many problems with my knees growing up
Looking back, I find it hard to pinpoint my transition to having arthritis. But by my early twenties I had stopped sport all together. This was difficult as I was active and adore team sports, but the pain was too much.
It wasn’t until a few years later, that I sought a second opinion and was told I had arthritis. I was officially diagnosed with psoriatic arthritis four years after that. I was 33 at the time and despite a few flare ups, where my joints would swell dramatically and lock, I was living a fairly normal life and didn’t want to take the methotrexate I was offered.
A year later, I limped back to the hospital with a stick, pain and swelling throughout my body, a gradual and increasing onset of tiredness had taken over my mind and body. It felt like I had been hit by a truck, and each passing day it was getting worse rather than better.
It’s not just painful joints. It’s like having to hold up weights, sometimes heavy, sometimes not so, but always there.
The condition has had a huge impact on my life, but I feel remarkably blessed. I carry a fair amount of pain in my knees and hands, but my body has responded well to the treatment for the past five years. It’s been a gradual process but I’m now in the best health I’ve been in since my early teens.
I run an organisation that has grown up around me, increasing in size and scope year on year. Initially, my capacity to manage this workload completely disappeared. You feel drained, sometimes completely bottomed out. When it got really bad, I spent a few weeks unable to walk. I was so grateful that my board stuck by me. It’s important that employers are flexible and allow people to find what works for them.
My friendships took a hit too. I can’t commit to the same level of engagement that I used to and for a good year I was nowhere to be seen. Not only are you in pain and feeling exhausted, you feel embarrassed. I am a confident guy, but at this point I was a shadow of my former self.
It was really hard with my kids in particular. I couldn’t have them sit on my lap, I wasn’t able to run and play with them, missing key moments in their development. Now that I’m able to ride my bike with them, it’s one of the great joys of my life.
It took a toll on my mental health as well as my physical health
My wife Jo has stood by me through it all. For a short period in 2014 she was my carer. She worked full-time, raised our two kids and all without any help from me. I felt lost in a trap of fear and loneliness, and without her I’m not sure I would have emerged.
I also have my faith, which has been key to my mental and physical health, and my desire to press on. This has been tested at times, but ultimately my beliefs give me hope and have been tremendous drivers in getting me through dark times.
These days, while my capacity is less, I like to think that I manage it well. I schedule a full day’s rest. I take time out with my family. And, of course, I cycle. I take the methotrexate, and sometimes it means I have a low day as it causes nausea and side effects, but on other days it doesn’t affect me.
My experience of cycling with arthritis is actually a good one
I took up cycling as a way to keep fit. Its non-weight bearing so I’m able to do it despite the pain in my knees and wrists. I also find it has a positive effect on my mental health.
Don’t get me wrong, it’s not been all smooth sailing and getting to this point has been a gradual process.
I built up slowly, taking things one step at a time. If you haven’t been exercising you can’t suddenly do this. I started off swimming a few times a week and then got an e-bike, and for nearly a year I cycled that to work and back. Once I’d built up strength, I made the jump to using solely my muscles.
There needs to be a greater understanding of the condition
I am incredibly proud to be riding for Versus Arthritis. Firstly, because I truly want to see progress made in the area of medication. Medication can feel like both a blessing and a curse. I’m very aware that it’s helped me to get me to where I am today, but also that it doesn’t work for everyone. I want to see more progress made in this area.
Secondly, I want to share my story, and the story of others. It’s a silent disease, and often dismissed as “a bit of pain” due to a lack of understanding.
This is one of the biggest rides I’ve done. I hope it motivates people, I hope it raises awareness, I hope it raises money, and I hope it’s a fun day!
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