The joy of seeing the bride and groom perform their ‘first dance’ before the rest of the reception guests pile onto the dance floor. Of having a party with friends, when someone plays a song that just begs us to start to move in time to the music. Or indeed a good Saturday night out, perhaps when we were younger.
For me it was a career – I had danced all my life and it never seemed as though there would be anything else I should do. After leaving school, I was offered a place at London Contemporary Dance School which enabled me to turn this passion into a profession.
The four-year training was tough; ’twas in the 80s when sports science and body shaming weren’t recognised and daily technique classes required you to push through pain to constantly improve your performance.
It was during this time my back pain started but I assumed it came with the territory. After graduating with a 2:1 Honours degree, I went on to dance professionally and felt I had found my place in life.
I travelled all around the UK, touring with various dance companies such as Gestures Dance Company (Manchester,) Opera North and Scottish Dance Theatre.
Then, when I had my two wonderful children, I worked as a dance teacher. As my career progressed, so too did my back pain, I was told it was just muscular but I knew my body, there was more to this and so I had to pay for my own MRI to see what was going on.
From having had a normal spine that I had seen in an X-ray from when my pain started in my training, I now had multi-level osteoarthritis and degenerative disc scoliosis, where several discs had worn away – basically they were fusing squiffy.
In layman’s terms, this meant that for the past 30 years I have lived with this neurological condition which causes persistent and progressive pain. It used to be very slow and painful to even get out of bed and I was taking a lot of painkillers just to get through the day teaching dance classes. At this point, 12 years ago, I had to give up my teaching career and retrained as a dance movement psychotherapist.
Once I had the MRI, I was taken more seriously and, over the next ten years, a treatment called radio frequency denervation made a significant difference. Although I still had pain, a lot of the jolting nerve pain disappeared. I was so grateful for this but a few years ago I was told I couldn’t continue it as I had had it done too many times.
Funny how, as one door closes, another can open. I was at the doctors for something completely different and the lovely nurse noticed from the way I moved that I was in pain. This started a whole conversation about living with chronic pain.
She had experienced fibromyalgia and had overcome a lot of her pain by having oxygen therapy at the Multiple Sclerosis Lothian Therapy (MSLT) charity, which is based in Leith. She thought that there might be some treatments offered which would help me.
Despite not actually having MS, the staff and volunteers were so very welcoming. They suggested I tried using their oxygen chamber which is in their office.
Imagine, if you will, watching a film about deep sea divers who emerge from the water and then sit in a tank which pumps pure oxygen into their bloodstream for about 45 minutes. Well, that’s what I did. I may have been a tad sceptical but constant pain makes you not think twice about leaping into the unknown.
In the end, I feel lucky to have found this charity, now rebranded as Compass, which treats all those with neurological problems (apparently around one in five people in Scotland).
It hasn’t and won’t cure my condition completely, but I can now get out of bed more easily in the morning and have cut back on the painkillers. The other thing it has done for me, which I hadn’t anticipated, is that it has helped me to stop fighting my pain and to reach a place of acceptance.
I met some amazing people in the oxygen chamber, all with different reasons for being there from MS, cancer, motor neuron disease and more. We would all swap advice and information on things that were helping us and there was an unsaid sense of concern and respect. I found it humbling and realised that so many of us have medical struggles, but if we can accept where we are with it, we can be more in the moment in life.
It’s been exhausting focusing on my pain, trying to defeat it and feeling sorry for myself. I now accept it. It’s no longer my enemy.
I live a slightly different life to accommodate my pain. I have had to reduce my work hours, I spend each morning mobilising, stretching and strengthening my body so I can use it.
Maybe as you get older you care less of what people think and that’s why I own how I live: sitting in a restaurant with a hot water bottle sticking out of my trousers and special cushion to sit on; pressing down and whizzing forward, legs dragging behind (fabulous back stretch) as I push a trolley in the supermarkets. And the one that embarrasses my kids the most is the ‘oooeeer’ noises I make as I get in and out of the car.
I hope I am a testament that it is possible to live happily with chronic pain. Having said that, if there is someone out there with a miracle cure, I’d be more than happy to give it a bash!
For more information about Compass, visit its website wearecompass.org.uk