“If it was not for colour, visual imagery and emotional expression, my journey experiencing chronic spinal pain would have been very different” says Emma Scott-Smith, Professional Artist and Researcher and Lecturer at the University of Stirling.
From the time I first became bedridden, fashion and art kept me linked to the outside world. My parents would buy the clothes I lusted after in a magazine with my saved-up money and then hang the clothes on the wardrobe at the end of the bed. This was my coping mechanism, along with a soon-to-be daily routine of opiates by the age of 15.
Once in my wheelchair, I began to get my life moving and being productive gaining an offer for my first solo art show at 19. The exhibition, ‘The Last Hope’, expressed my experiences of pain and hope.
Fast forward 20 years, I am working as a researcher and lecturer at university and exhibiting my work internationally.
This has all only become possible by employing a multi-disciplinary approach with the Pain Clinic. I see a pain specialist ‘anaesthetist’, physiotherapist, pain psychologist and pharmacist. This team has enabled me to manage my pain, although flare-ups do occur.
Three months into pregnancy the pain was unbearable
I un-expectantly found myself expecting a second child, so we needed to work together to try to reduce my morphine as much as possible to help me later in the pregnancy. However, I never realised how difficult this second pregnancy would be.
I was plunged into agony three months in. I had been steadily reducing my opiates prior to pregnancy, but now my medication was hardly working. From 85mg, twice daily, I jumped to 95mg, then 105mg, 115mg; up and up. It was awful, I felt so guilty, but the pain was unbearable. I wanted to walk in front of a bus some nights as it was so bad.
Luckily my obstetrician and pain specialist could see the pain. I had a C-section five weeks early as my waters partially went at 32 weeks. I was released from hospital on 170mg, twice daily, which, five months later, I have managed to reduce to 110mg twice daily.
No opioid withdrawal symptoms in baby
I was lucky my baby didn’t have severe withdrawal and was fine after a week. He is a beautiful, heathy boy. My pain is far better than when I was pregnant but still tough compared with my pre-pregnancy pain levels.
I know I’ll be able to reduce further, over time, if I listen to my body and take getting back to fitness slowly. The tools I have learned over a lifetime of living with chronic pain have enabled me to use psychological, theoretical approaches to visually check in on my pain.
I use shapes and colours to visualise my pain
I’ve trained my body not to react to this visual imagery that I associate with the pain in my spine. I used to envisage it as a black, spikey, throbbing mass; now it’s more of a red, golden glow. This visualisation technique is how I allow my body to accept itself.
Having an invisible disability is problematic, as people in pain look fine unless you know the signs. Having two children is something I never dreamed of and now it is a reality. I can’t listen to my body and rest as much as I did before, so the pain is more difficult to manage. But, it has given me such joy to think that my body (with a lot of medical support) has managed this.