Rediscovering Life After Diagnosis, my journey with chronic pain and finding Purpose despite pain – Nikki’s Story
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Setbacks and Shocks
In early 2014, I had a normal day at work in a busy supermarket—serving customers and filling the frozen food section. The following day, a rare Saturday off, I was determined to enjoy it. But when I stood up from the kitchen table, I felt a niggle in my lower back. I assumed I’d just twisted awkwardly. As the day went on, the pain worsened.
By Monday, I couldn’t go to work. My GP signed me off for a week with painkillers and anti-inflammatories. I told work I’d be back soon—once the medication kicked in. But I never went back.
After X-rays, MRIs, and several other tests, I found out I was born with a spinal defect. At 36, it came as a huge shock. By 2015, I was told I would never work again and needed a disabled parking badge because my body was ‘too delicate.’ More shocks.
Finding My Own Way
I tried many different types of treatment before deciding—together with my doctor—to come off all medications. Surprisingly, my pain didn’t increase. That’s how I knew I’d made the right decision for me at the time.
I began regular chiropractic treatment, and my chiropractor explained my condition in a way no one else had. Finally understanding what was happening in my body helped me make the changes I needed to move on. I started doing daily physio, which helps me stay strong.
As I got stronger, I started going out again. I joined a local women’s group, and by 2017 I was nominated as Chairperson—something I still do. It’s voluntary, so there’s no pressure if I need to step back.
I even started playing music again—something I hadn’t done since school. With less pressure and a new routine, I found time for the things I love.
“Understanding what was going on with my body helped me move on with my life and as my body got stronger, I had time to do things I hadn’t done since school”
Regaining Control
Regaining Control
Now, I feel like I have more control over my life. I’ve learned how to pace myself. My top priorities are my physio and appointments, but I make space for joy too. If I have a group outing or a band gig, I rest the day before and after to make it manageable. If something feels like too much, I make small changes—like organising a lift.
Finding Support through Chronic Pain Ireland
A lot of what I’ve learned about managing life with chronic pain came from Chronic Pain Ireland workshops. I especially found the pain management skills helpful. I was surprised to learn about the emotional grief we experience—and it made sense, because I was right in the middle of that process.
I’ve made lifelong friends through CPI, people who truly understand. Just being in a room with people who ‘get it’ was a massive relief, especially in the early days.
““Being part of the Chronic Pain Ireland community, meeting others who just ‘got it’ was a massive relief”.
Giving Back
Over the years, I’ve fundraised and advocated for Chronic Pain Ireland. In 2016, I hosted a ‘Celebration of How Far I’d Come’—a way to thank those who had supported me. That event became an annual fundraiser that people now look forward to.
In 2024, I was proud to become a Chronic Pain Ireland Pain Ambassador. I use my voice to raise awareness, challenge stigma, and let others know they’re not alone.
I’ve also contributed to Chronic Pain Ireland’s ongoing research initiatives with a variety of University partners, as a Public Patient Involvement (PPI) representative with lived experience of chronic pain helping develop and co-design supports and I’ve learnt to facilitate workshops on stigma.
I advocate because Chronic Pain Ireland is an amazing but small charity —and I only found it by chance. If my story helps someone else find it sooner, that’s worth it.
My advice to others
Ask questions. Get the answers you need to move forward. It’s not easy, but it is possible. There will be ups and downs—but once you understand your limits, you’ll find your rhythm.
Take every referral offered. Ask questions. Some may not help, and that can be tough—but keep going. Someone will.
And it’s okay to say no. To ask for time. To make the decision that’s right for you.
Find a local group or take part in Chronic Pain Ireland’s events and coffee mornings online —because tea, chats, and laughter truly help.
And of course, for chronic pain support reach out to Chronic Pain Ireland and avail of the services they provide.
“Living with chronic pain isn’t easy, but with the right support and understanding, we don’t have to face it alone”.
