Grant’s Story

I had the pleasure of attending the Living Well Course at St Mary Hospice in Autumn 2017.

In 2014, I was diagnosed with a condition called Axonal Sensorimotor Peripheral Neuropathy. It is a genetic condition which causes the core (the Axone) of my peripheral nerves to die from my extremities back over. The most significant symptom is severe pain in the feet and hands, running up into the arms and legs. The pain is extremely hard to supress using conventional pain medicines and requires specialist treatment with tricyclic and other neuropathic pain treatment drugs and sometimes in combination with opioid drugs like morphine or fentanyl. The pain can be debilitating and relentless. In my case, like so many others, the pain gradually wore me down and it became so bad that it seemed my only refuge was when I was asleep. Sleep became my best friend, when in fact it was my worst enemy. I spiralled quickly, I let the pain control me, I became anxious, depressed and angry and I became addicted to a pattern of unhealthy daytime sleep. My life had stopped. I was stood still, letting the days just drift by whilst being held to ransom by my pain.

However, I was introduced to the Living Well Course at St. Mary’s Hospice and can genuinely say that it has turned my life around.

I’d already spent some time with the Persistent Physical Symptoms Clinic, learning about my condition and learning about how pain works, however, what I really needed were the tools with which to fight the pain and the spin off symptoms that prolonged pain causes. This is what I was missing and this is exactly what I gained in my time on the Living Well course. We learned seated and standing Tai Chi techniques for relaxation, we were shown box breathing and other techniques to help take focus away from pain, we were even shown techniques for accessing the brains very own toolkit of amazing pain relief chemicals, as well as learning about health enhancing foods and drinks. The course centred on the philosophy of being kind to ourselves, something I found very hard to do when consumed by pain, but eventually, with the support of the St Mary’s practitioners, I found the ability to take a metaphorical deep breath and I started to focus on my recovery. Fundamentally, my time on the Living Well course gave me the strength to start the healing process, it equipped me with the tools I needed to aid my recovery and maintain my resolve even when that recovery would inevitably become difficult from time to time. I now make the best of my time with family and friends, I keep my mind busy as much as possible, I even chose to pursue a new career that I have dreamed about for years and I no longer let my pain control me. I’m not cured, but I no longer let the pain deteriorate my mental health or stop me from doing the things I want to do. I feel I gained this resolve as a direct result of the Living Well course at St Mary’s Hospice and I am proud to be able to share my experience with others.

Follow the link to find out more about our Living Well Services. And thank you to Grant for sharing your story, we hope this inspires even more people to benefit from our services. With special thanks to our funders including Ørsted.