What Can Axial Spondyloarthritis Give Back to You?
Axial spondyloarthritis has taken a lot from all of us who have it. The life we thought we were going to have, the hobbies or passions we have had to reduce or let go.
But, if we look in the right places, if we step back from the in-your-face every day reality of living with chronic pain, you might find that it can also give back, in ways that we never expected.
My name's James, and I've had axial spondyloarthritis for over 20 years. My career in IT came to a halt one year when my symptoms got so bad that I could barely move. For 8 months, my life consisted of shuffling on two crutches in excruciating pain from my bed, to the sofa, to the toilet. The rest of the time was just existing, in severe pain. The only time I left the house was to visit the hospital (looking back, it was good training for life in lock-down!).
Although this was pretty much my rock-bottom, it was also the seed for changes in my life that I'll always cherish, and be thankful for.
Realizations and life changes
I realized that I didn't really like the job I had in IT. I realized that if I ever got back to work, I needed to find something that wasn't just a paycheck. I realized that my work had to be something that I loved with a passion. This, I decided, was the only way I would be able to motivate myself. And this is what I'm doing now - I left my IT consultancy job, and I've started my own business to build a symptom diary app called Chronic Insights. It's something that I'm passionate about because it's using my experiences to actively help other people with chronic pain.
I started to play the piano, because one day lying on the sofa in pain, I heard a song by Philip Glass called Metamorphosis. It sounded so beautiful and yet so simple, that I decided right then that I would learn how to play it, to give myself something to do. Today I can play about 30 songs on the piano, and I'm so grateful for this skill that I have, a skill that I wouldn't have if I didn't have axial spondyloarthritis.
Chronic pain without frustration
I also discovered mindfulness and meditation, something I turned to when I was desperate for something to help calm my emotional turmoil. Mindfulness has taught me that it is possible to live with chronic pain without the fear, anxiety, and frustration that had locked inside my head for so long. Without this experience of having axial spondyloarthritis, without this enormous test of my resilience and character, I would never have found out how strong I can be, and I would never have discovered the peace and calmness that I have found in mindful meditation.
So, although I mourn the life that I could have had without axial spondyloarthritis, I also cherish the things that it has given me, and celebrate the person that it has made me.
What has axial spondyloarthritis given back to you?
Does reading AxSpA patient stories help you in your journey?