Life, pain and the whole damn thing

In case you’ve almost missed it, this week was National Pain Week. Chronic pain has many sources and is not usually visible, which is why many of us who suffer with it are inevitably faced with the exclamation, but you look all right! Just a hint folks, not a good way to start a conversation with someone whose every fibre is screaming although you can't hear the vocals. 

I can't speak for the origin of the pain of others but I suspect conditions of onset might be common. Mine developed after lifesaving surgery and gave me a completely new set of challenges. It took three years to diagnose properly. By then, I was barely functional. I own up to being a major overachiever so I was resistant to the adjustments that needed to be made. I had a high-profile corporate career, a large extended family and community commitments. I wanted to get up, go, and keep living the life I thought I'd get back once my surgery was over. Luckily, a fantastic pain specialist, stints in a rehab hospital and a team of physios, osteopaths, occupational therapists and counsellors, all worked to help me get a new perspective on the situation.

The first thing I had to do was to develop acceptance. Notice that I used the word 'develop' – it took a while. On the days that I felt better, I rushed to do heaps of 'catch up' things then wondered why I crashed the next day. I learnt with practice to do something called 'pacing'. Ha! No mean feat for a woman who lived at a million miles an hour.

My specialist gave me a useful analogy one once, telling me to think of my daily energy availability as a pie (pizza if I'm keeping with my Italian origins). This has to be sliced up for allocation – your brain needs the energy to think, move and to process all those functions that run like background apps of which we're unaware. With chronic pain, the brain is also trying to get that pain under control so for that it grabs the largest slice of the pie/pizza (as any of you with hungry kids would understand). This leaves less energy for the background bits that have to keep running regardless. And, if on those days I'm trying to do too much with a smaller energy slice, it's no wonder exhaustion ensues. When I finally understood this and married it with what I'd been taught to help manage my pain – medication when needed, eating well, relaxation, massage, counselling, yoga and appropriate exercise - I achieved more.

One of the characteristics of my pain is that it is unpredictable. More correctly, the peaks in it are. It's always in the background and when I stop and mentally scan my body, I feel pain it everywhere. But there are days when for no discernible reason, it spikes and that can last for a while. On those days, I might not be able to put my feet on the floor without pain so it's hard to walk. Nerve pain fools me into trying to work out if the sensation is burning hot or freezing cold, any kind of stimulus is painful, my head gets fuzzy and concentration is a chore. I can't grip things, I can't sleep and I can't eat. Nausea sets in and fatigue can be a bitch. That's just the stuff that's easiest to deal with.

I've consulted anyone who is an 'ologist' in every field because chronic pain is a complex condition involving many body systems. All of this helps me to understand and to manage. However, chronic pain affects us physically and psychologically. It can be depression and is anxiety provoking. At times, I feel vulnerable as if my body is letting us down. The worst part of the condition for me was the initial loss of identity. After almost dying from the medical condition that resulted in the pain's offset, I was forced to give up my career and income, which was gutting. I identified with my job. I couldn't do as much for my family and friends nor be involved in the activities that I loved. Good counsellors and staying connected to people as much as I could, got me across the line, helping me understand that living life differently can have benefits.

Making changes didn’t mean giving up enjoying life. To the contrary, it meant that through learning to understand my condition, and how to manage it, I could go on living, even if it was in different ways and at a different pace. It isn’t perfect, far from it. I read avidly about new research and practices in pain management, I constantly try to improve how I approach it.

My suggestion to anyone struggling with chronic pain is to find a pain practitioner or a pain support clinic – advances in neuroscience are being made all the time, which practitioners know about and can apply to each person's situation. Read up on the condition, adjust to the circumstances where possible by following management strategies. There are websites and resources that you can hook into and follow. Stay connected to the world.

Chronic pain brought me a changed life. While this has its challenges, my life still  has potential, I still have contributions to make, there is still happiness and even joy.