One of the reasons why Cultivating Change came about was down to chronic pain!
Chronic pain is one of those physically debilitating problems that feels endless, is so draining and tough to cope with on a daily basis. It also affects your mental wellbeing because it is hard to talk about. You also don’t want to seem you are moaning about it and you worry what people will think about you, particularly as they can’t see it. Often people don’t know what to say to you about it and there is little medical support apart from pain relief which comes with it’s own problems. I have lived with a degree of chronic pain for the last 20 years and therefore, totally understand the impact it has on physical and mental health.
I first slipped a disc at 18 doing my A levels but managed to recover well with physiotherapy. From the age of 25 years old my back left me in a lot of pain, even doing normal day to day activities triggered my pain. As a keen sportswoman I had to turn down any opportunities to do activities I love such as playing tennis or netball with friends and even low impact exercise classes instigated pain. In 2004 I had an epidural so I could get through my wedding day and walk down the aisle, followed by my first back operation in 2006.
I struggle to accept my body’s limitations and keep researching chronic pain, I’ve tried to keep active, believing I could beat this pain if I kept doing all the things I read about. I walked, tried pilates, yoga on a one to one basis and followed physiotherapist exercises given to me to the letter.
In 2015 it just became too much! I couldn’t walk without extreme pain and with 3 young children and a teaching job it was overwhelming. Taking opiate painkillers helped me to reduce the pain so I could carry out the essentials but mentally it took a real toll. I felt a failure as a mother, wife and teacher and my self-esteem took a huge knock. I got my self-worth from achievements in my job and life and when this was all taken away could not see any way that I was useful. I hated always having to say no to friends and family or leaving early if I went to social events and felt very guilty that I couldn’t join in.
I still do say yes to going out and doing more than I should as I want to do normal things, but the effect it has on me in the days after is painful and exhausting. There is a constant discussion in my head whether it is worth the pain? Basic things people without pain don’t have to worry about just make me feel exhausted and inadequate. A mixture of guilt, high expectations, fatigue of living in pain and not knowing if this will change is wearing and takes extra strength to get up and face the day.
There are often inaccurate judgements made by some medical professionals about chronic pain and I have had some very negative experiences. Some professionals fail to fully understand the impacts of chronic pain, often finding it easier to p blame a patient’s mental health as a cause of chronic pain. This for me was the other way round. Being in pain with little support and hope has caused feelings of inadequacy, loneliness, depression and self-doubt and this gets worse when you are not listened to!
In 2015 I was lucky enough to meet a supportive spinal surgeon who finally diagnosed my physical issues and I have subsequently had 6 operations to stabilise my back and pelvis. This has resulted in me having a stronger structure, being able to walk again and stand up straight; but due to the amount of metalware in my body I am still getting a lot of pain. in 2019 i have had a spinal cord stimulator inserted into my spinal column to try to block my pain signals and this has given me hope that I can reduce the pain further at some point.
Life is harder with pain both physically and mentally and I know there are many people out there who are struggling silently with it. Change is needed in the approach to patients with chronic pain and instead of blaming mental health, professionals need to work together with the patients to find solutions.
Thankfully, I have had some great people in my life who have taught me to accept my pain more, not fight my body and live well with the body I have. My adaptive yoga teacher told me ‘the doing is in the undoing’. This was a key turning point for me as I realised success doesn’t come from continually pushing your body, but looking after it, mentally and physically. I have learnt to work within my boundaries and I am now starting to work with it rather than against it.
Throughout these difficult years, being outside in nature has been so important to me. I have discovered my happy places are outside, such as by the river, at the beach or simply in my garden. When I am having a hard flare-up, just going out and sitting in the garden, focusing on the flowers and vegetables and their day to day growth and changes in colour, smell etc have given me hope that life is precious and a bad day is only temporary and there are always options.
Here, at Cultivating Change, one of the things we want to talk about are the impacts of living with chronic pain and therefore support people to also get outdoors and grow or just relax in nature in as little or as much capacity as they can; become part of a community doing the same thing. Hopefully helping people achieve a more positive quality of life.