Amy’s story

“I feel I’ve been given a new lease on life and am physically able!”

Amy began experiencing pain her joints in her early 20s. When her GP on the Isle of Man mentioned it could be axial SpA, that was the first she’d heard of the condition – around 15 years after she first experienced symptoms. Last year, she took part in Walk Your AS Off. 

Here’s her story.

I began experiencing pain in my joints in my early 20s, but at first it was limited to my knees and wrists. I had multiple surgeries to repair arthritis and enthesitis damage but without any mention of a possible cause related to something rheumatological. In my late twenties, my lower back and hips started to ache. Mostly at night and early morning at first, my lifestyle slowly adapted by moving less and taking more medication. Eventually, in my mid-30s, my spine hurt all day and night and I’d gained a large amount of weight as I exercised less and less. I ate poorly as standing to prepare meals was often too much of an ask and was depressed and tackling an overwhelming anxiety disorder.

“I ate poorly as standing to prepare meals was often too much of an ask and was depressed and tackling an overwhelming anxiety disorder.”

When my GP here in the Isle of Man mentioned that it could be axial SpA, it was the first I’d heard of this condition. We’d been treating the chronic back pain to the point where I was taking morphine every day and unable to work. Since I was diagnosed and started being treated, I’ve managed to come off the strong painkillers. In June 2022, I suddenly experienced my first bout of uveitis. Since my body was becoming stubbornly resistant to steroid treatment, I was no longer able to see well enough to drive.

So, I started walking to do daily errands and visit friends. I found that I was able to move and exercise when I’d lived in fear and resentment of my body for over a decade. Despite discomfort, the understanding that my pain from axial SpA doesn’t have to always limit my physical abilities allowed me to keep busy and somewhat transformed my relationship with my body. I’ve learned to befriend the pain. I discovered that I can be an active participant in my own life, and I will be okay. Over the last 10 months, I’ve slowly worked up to 5–10 mile daily walks. I still have bad days when I can’t move as much, and my walking pace leaves a lot to be desired. It’s a time consuming but hugely rewarding daily activity. But, in combination with proper nutrition, I’ve dropped over 8 stone so far. I was subsequently diagnosed with sarcoidosis which explained my chronic uveitis. However, I’m more than happy to get around by foot now versus driving.

“I was no longer able to see well enough to drive. So, I started walking to do daily errands and visit friends. I found that I was able to move and exercise when I’d lived in fear and resentment of my body for over a decade.”

To motivate me to get out each day in winter, I decided to set an achievable 2-mile daily target which I could reach no matter the wild Manx weather! NASS has been my go-to charity for the past few years. They’ve provided me with invaluable information and online support. So, I set up a JustGiving page and asked my friends to donate their spare change. 62 days of walking through December and January, I often went far further than the 2-mile target. But no matter the storm or spattering of snow, I’m so pleased that I fulfilled the goal – and raised £380 for NASS. With our cost-of-living soaring, I didn’t feel it fair to digitally beg. So, I asked friends to forfeit their morning takeaway coffees, which proved effective in slowly growing the end sum. Instead of bombarding their social media timelines, I sent a fortnightly reminder with pictures and stats on Facebook and Twitter, which boosted donations as well.

Now, I’ll be taking part in Walk Your AS Off this May. I’ve not set a daily target this time, just to get out and explore our beautiful Manx glens and cliff paths now that I feel I’ve been given a new lease on life and am physically able!

Feel inspired by Amy’s story? 

Click here to find out how to sign up for Walk Your AS Off.
Click here to create your fundraising page and start fundraising for NASS!