‘Taking ownership of your pain’. I read this expression in a forum post on the new Chronic Pain Team website and it got me thinking. About 6 years ago I was not coping with my pain and in a bad place mentally, I did not know how to keep living like I was and had reached a stage where I needed to make a decision, I knew things could not continue the way they were. At this point in time I had not been officially diagnosed with CRPS and therefore I was not receiving any useful treatment for my pain and in fact believed nothing existed that could help me, I was ignorant about neuromodulation and Ketamine infusions, these came later. Apart from the support of my husband I was on my own to find a way to keep living with my pain.
What I did was very simple- I developed my coping list of strategies and prepared to meet my pain flares head on.
Reflecting on this period of my CRPS journey where I was not receiving any treatment I realise that it actually served a hidden benefit: I learnt to take ownership of my pain and I became a survivor of each pain flare on my own. So when help finally came my way I was absolutely blown away that there was something on offer that could help and when I finally got my spinal cord stimulator I was even more amazed, I took nothing for granted. And then when I had my first Ketamine infusion and it took all the pain away I was even more surprised.
However, ultimately the medical profession can only do so much and there are bad periods where I still have to ‘do it on my own’. So I celebrate surviving this wretched disease for over 9 years and am grateful for all the help, care and support I am now receiving.
I think that taking ownership of your pain is an essential part of living with crps, you become the manager of your pain. Yesterday, despite some bad pain last week, I was invited to go for a short drive to the top of One Tree Hill (doesn’t every county town have one!) to do some sketching and take in the view of the rather stormy weather from a great height. It was an outing I needed to do, it did not involve a medical appointment but it did involve a small risk of flaring my pain but I decided I must take this risk and do something to lift my spirits. The stormy sky was stunning in the distance as it moved across the Grampians ranges from one end to the other; it was beautiful to be up so high looking down on the world. It was a reminder that there is a life to be lived despite my physical limitations and that I need to make more of what is at my door step and not set my sites too high when I am feeling depleted.