I never fathomed that the nerve pain that invaded my body 19 years ago would still be a constant presence today. With pain in my body for so long now, it’s been an even longer journey to manage how to live with it.
What I have learnt is that I can’t ignore it, push it away or trust medication to deal with it. Instead, I need to deal with it myself with my own tools: self-care and acceptance.
When my pain is heightened, it dominates every part of my life. Sleep becomes harder, and that lack of rest only makes the pain worse and my ability to manage it even harder. I’ve had to learn to be kinder to myself and to stop when I need to, even though it’s hard to do with my responsibilities as an advocate. Pushing through only makes it worse, so I’ve had to accept that rest is essential, not optional.
I write in my book:
“…The beginnings of my chronic nerve pain emerged, my damaged brain sending strange signals to my body. My pain seemed trapped inside my tight skin. Any movement, particularly in my left arm, automatically shook up the fiery thick balls of pain. They angrily rammed into each other as they tried to penetrate the skin to escape. If I lay still, the pain seemed to settle and, although still constant, appeared to simmer away deep down. “Don’t move,” I pleaded. “ p 99
Living with chronic pain can also be very isolating. There are times when I’m too tired to explain what I’m going through, leading to even more isolation. “If only others could understand then I’d feel better” would be my thinking. But obviously, this is never true. No one can understand what another person’s pain feels like.
Dealing with the invisible nature of pain is a big challenge as well. Because others can’t see it, they often don’t understand what I’m going through. This frustrated me and still does. However, I’ve learnt overtime that I can’t rely on others to get it. Instead of spending my energy on that frustration, I focus on what I can control, which is managing my pain, raising awareness when I can and taking care of myself.
Over time, I’ve come to realise that acceptance of the pain is key. “To accept what you can’t change and change what you can!’ I used to try pushing through the pain, hoping it would disappear if I just ignored it. But that didn’t work. Instead, I have acknowledged and learnt to accept the presence of my pain.
This has been incredibly powerful for my mentality around being able to manage it when the fullness of my pain can be experienced.
Despite everything, I’ve learned that while pain is constant, so is the need for self-care. On days when the weather is crazy, I’m sleep-deprived, or just plain exhausted, I know I need to juggle things and weave in more self-compassion. It’s a balance, but one that I’m getting better at managing.
I never would have imagined that I could live with this kind of pain for so long, but I’ve learned that with time, patience, and acceptance, I can manage it.
My journey hasn’t been easy, but it’s made me stronger and more resilient.