It’s good for me to be able to talk about what I’m going through. Which is difficult with a rare pain disorder because not many people can comprehend what it’s like. So when I do talk about it, it’s either within the online group I am in, or at a fortnightly pain clinic appointment.
At the moment I am in strange place of limbo with my condition. All the work I am doing with the pain clinic is to find ways to reduce stress – which in turn will make managing pain easier to do.
It was strange in the early days of developing central pain to be told by doctors and professionals that it is basically down to me to learn about my condition, and make sense of it. With the frustration of clear MRI scans and nothing showing in my blood results it became what felt like an isolating time. People wanted clear answers, such as my wife who was struggling herself to deal with the massive change in my physical health.
I was told it would be a very long time before I understood the complexity of my condition. And if you have for any reason looked into brain function, neurotransmitters or tried to understand how pain signals are sent and processed in the brain through the central nervous system you will understand why.
But as I have discovered, understanding the science is easy compared to the complexity of learning how to make sense of managing it all on a daily basis. I have worked closely with the pain clinic on this. The number one item in my tool box is no non contemplative meditation.
Because the pain is permanent, it takes a big toll on my mental health. As much as I try to manage staying out of flare ups through rest and minimal physical strain, I always eventually become overwhelmed through sheer mental and physical exhaustion. I can’t avoid flare ups. And with no real pain relief, the strength to cope must come from within my mind. In mentally dealing with the pressures and frustrations of a permanent condition. Which is constantly evolving.
I’m 18 months in with central pain syndrome, still early days in the scheme of things and it’s the toughest thing I have ever had to face. And even though I now know a little, I am still trying to make sense of the pain. I have to stay one step ahead of something bigger than me, and largely beyond my control. And there lies the real daily challenge.