With no end in sight, chronic pain has a massive impact on your life and emotional wellbeing. Tricia O’Shea and Rosie Farrell share how they learned to live alongside their symptoms and the importance of remembering that you are not alone
Living with chronic pain means that every aspect of 58-year-old Tricia O’Shea’s life has changed utterly. But she’s determined to let other sufferers know that while her life looks a lot different to what it once did, it’s a life full of new purpose.
It was April 2010 and Tricia was working as a PE teacher, based at a number of different primary schools in Co Kerry. An accident on her way home from work one afternoon left her with injuries to her lower back and pelvic area, which resulted in the onset of chronic pain. It put an end not only to the teaching career she loved but also to her passion for exercise and the great outdoors.
“‘Do something you love and you’ll never work a day in your life’ is something I lived by. My philosophy was that through teaching physical education, I was also helping children to build their self-esteem and confidence. When I wasn’t at work, I was climbing mountains, dancing or doing yoga. Movement was not only my working life, it was my passion,” says Tricia of her lifestyle prior to the accident.
Injuries to her hips and her coccyx mean chronic pain is now part of her everyday life. At times, her whole body is overloaded with episodes of pain so bad she cannot move and has to call for help. She will require ongoing pain management treatment for the rest of her life.
The only way she can describe it when one of these acute episodes occurs is that she’s left immobile and roaring in pain. The last time this happened was in 2019 when she was hospitalised for two weeks, and Tricia never knows when one of these pain episodes will erupt.
On top of the chronic pain, she also developed a number of medical conditions including osteoarthritis, sleep apnoea and gall stones in the wake of the accident.In a diary entry from the New Year in 2012, Tricia wrote that she was very stressed. “My heart and spirit are broken, and I’m confused as I remain in chronic pain. I’m sad, lost, afraid, and overwhelmed. I find it hard to deal with the ongoing physical and psychological exhaustion, memory lapses, and inability to focus. I feel lonely, isolated, angry, and frustrated”.
Describing that time as a low point, Tricia decided that she couldn’t keep looking back to what life had been like before. She says she needed to let go of the past to allow herself to feel hopeful for her future.
She began to eat more healthily and more mindfully, taking courses with Chronic Pain Ireland (CPI) to help build her knowledge in this area. She realised that while movement was painful, she would walk as far as she could even if it was only around the house. She began using tools of meditation, music therapy and relaxation techniques to help manage her condition.
Understanding her own body and being consistent with the techniques that allowed her to manage her condition all helped. “You can’t control what’s happening but you can control how you respond to it. That’s the key to the whole thing,” says Tricia, who also managed to reverse some of the medical conditions she was diagnosed with.
“Six years ago I never thought I’d see the day I’d walk outside this house on my own. I was on so much medication and I was in so much pain. This year, I ended up in Athens presenting at an international conference on chronic pain and music therapy. I never thought I’d get outside the door, never mind out of the country,” she says.
Being open to asking for help, reaching out to organisations like CPI and realising she wasn’t alone were also hugely helpful along the way. “I was determined to get back to my old life but until you accept that you can’t go back — you can only move on to a new normal — it’s only then you can improve,” she adds.
Now 32 years old, Rosie Farrell was 25 when she was diagnosed with MS. And while not every MS sufferer will have chronic pain, it became part and parcel of Rosie’s life.
In her case, the pain developed slowly at first, becoming so bad that she couldn’t stand up. In 2016, a spinal relapse brought pain the likes of which Rosie says she has no words to describe. At the time, she and her then-fiancé Niall were planning their wedding and Rosie, who was working for Irish Country Magazine, thought there was no way they could go ahead with plans for their big day.
One day, exhausted with pain and on the floor, she read a piece of advice that never left her. It was simply — ‘know that you’re not alone’ — letting readers know that they would be able to live with chronic pain.
It was around this time that Rosie connected with CPI because she wanted to find people who, like her, were suffering from chronic pain.
“For me, admitting I had chronic pain was harder than admitting I had MS. That was a turning point, as I hadn’t grieved after I’d been diagnosed with MS or with chronic pain but I had to grieve for what I’d lost to build my life back up again. I was now a different person and I had to see what my life could be like as that person,” she says.
Now living in Sligo with her husband Niall, Rosie says in-patient neurological rehabilitation in 2019 and new MS medication meant she stopped using her wheelchair all the time about a year ago. While there are days she still needs walking aids, Rosie has gone from a place where she couldn’t walk for two minutes to being able to walk for half an hour on some days.
She started working remotely in 2016 at a time when it was still relatively rare and now does a few hours a week, although any prolonged length of time at the computer can cause a pain flare-up. Her week must be mapped out well in advance to make sure she’s not overstretching herself because doing too much can lead to more pain.
“One of the things I had to learn was having boundaries for myself. That’s not being selfish — that’s self-care. It’s me looking after myself so I can enjoy life,” says Rosie.
“I’m the best I’ve been in years. There are days when I hit a number two on the pain scale but you can go from a two to an eight if you’re not careful. There are things that are within my control, things like trying not to get too stressed because that extra bit of stress can send me into a flare-up,” she says.
Rosie can’t stress how important it is for people to realise they’re not alone. “Knowing that I could still live a really happy and enjoyable life as someone with a disability — that, for me, is a big thing,” she adds.
Life is different to how she saw it going for her but she points out that none of us knows how life will turn out. Letting people know they’re not alone on their journey is also why she started blogging about her experiences. Those voices who reminded her that she wasn’t alone when she was first diagnosed provided her with a lifeline. She hopes she may now be that lifeline for others.
According to Martina Phelan, chair of Chronic Pain Ireland, everyone who suffers from chronic pain is on their own unique journey and it can be shaped by injury, experiences, stigma, suppressed emotions and past traumatic events.
For September, which has been designated Pain Awareness Month by the World Health Organisation, CPI is hosting a series of events. And as part of CPI’s 30-year milestone celebrations, it’s launching the Hidden Disabilities Sunflower initiative to highlight the plight of those living with chronic pain and non-visible disabilities.
Sunflower lanyards are being gifted to all CPI members and can be worn in public to discreetly indicate to others that the wearer has a hidden disability and may require additional support.
“People need to know there are others out there and that there are treatment options. A lot of people have never heard of CPI or they might not know there are pain specialists out there,” adds Martina Phelan.
For more information visit chronicpain.ie and for Rosie Farrell’s blog, see creativelyrewired.com