My name is Marcus Hamilton and I live with chronic pain

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My name is Marcus Hamilton and I live with chronic pain, 24 hours a day, 7 days a week, 365 days a year. That is, I am perpetually teetering atop a dark chasm called Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy.

The ‘initiating injury’ or in layman’s terms, the cause of this nightmare, is what I thought was an insignificant and trivial accident.

I knocked my knee on a door frame.

Normally this would be a small and innocuous accident, taking a day or so to recover from. It is natural for your body to feel pain at the time of injury, maybe the pain lingers for a few days to enable any trauma to heal, but then it would be gone – a mere memory. But then again, most people don’t develop CRPS.

CRPS is a malfunction of the autonomic nervous system, the part of the nervous system responsible for the control of our bodily functions which are not consciously directed, such as breathing, the heartbeat, digestive processes, and of course pain.

In my case, over time CRPS has spread from the original site on my left leg to the top and sole of my left foot.
My ‘Fight or Flight’ response has become mixed up in an inexplicable short circuit, which continued to send constant pain signals for weeks, then months and now years. The pain signals that are sent cause skin colour changes, temperature changes, inflammation and other ‘complex’ symptoms caused by my medications. We call these ‘flares’.

My nervous system is constantly over-reacting, turning simple things into a nightmare. Even the smallest incident can stop me in my tracks for days, weeks or even months. It is like playing ‘Go Fish’ with my autonomic nervous system. A flare can be caused by blood tests, accidental bumps and falls, medical treatments including invasive surgery, or things as inconsequential as a child’s passing touch, a gentle breeze, the barometer dropping, a splash of water, hot or cold… well, you get the picture. My nervous system does not work properly, it’s a bit of a drama queen. And each flare brings on amongst other things exhaustion, insomnia, frustration and anger. I seem to be constantly having to fight against my own body.

This condition means that when I have a flare I can go days without stepping out of my bedroom. Doing something as essential as showering can be a step to far. The simple things in life like shaving or preparing a lunch are the first things to go out the window. I have forgotten about date night or fishing with the boys; even my own children’s birthdays can be a major hurdle.

I live in a hectic house with four kids and a very patient wife. Our youngest child has just turned three so on those noisy days the first thing I reach for in my toolbox are my headphones. Understandably, it has taken the family a long time to adjust to Dad’s life with CRPS. We all live with it, it’s not just me. Some days I feel like a failure, as a husband, a father and a friend. Other days I feel like I have achieved the world, albeit in small chunks.

Failure usually revolves around dealing with family and friends and how those relationships have been constantly interrupted by pain. Achievements can be huge things from a family trip to Auckland Zoo through to simple things like reading with my children, but usually I find that anything worth doing means I need to boom and then bust, as a I reap the consequences of doing too much.

I have learnt new and interesting words that I didn’t even know existed … catastrophizing, neuropathic, impacted bowel, brain fog, paranoia, hematologic, musculoskeletal pain, mechanical hypoesthesia, amongst many others.
Doctors and other medical professionals often have a poor understanding of CRPS and its treatment. The medical community needs to have ongoing training on how to care for people who are in chronic pain. Unfortunately, I have lost count of the number of times my understanding of my condition has outstripped medical specialists’ understanding of even simple concepts. Eighty per cent of my treatment has been provided by professionals who have treated me well … but we always remember those 20%.

There are many things I still haven’t come to terms with: the fact that this is a chronic condition; the fact that I probably won’t work full time again; that I must undergo ongoing treatments and surgeries, many with health risks. I still haven’t come to terms with the fact that there is no cure.

The emotional effects of suffering from CRPS are often overwhelming. I exist in continual, unbearable pain. Losing the ability to work, being unable to move freely and the impact this has on my family, the constant stress on social and loving relationships, huge ongoing financial issues, the lack of consideration and support from family and friends, these all contribute to the development of pain flares, anxiety and depression. I have found myself becoming swamped, dejected, and a feeling of hopelessness constantly sneaks in.

I know personally why CRPS is dubbed the ‘suicide disease’, with some people I know desperate at times to halt the incessant pain by ending their life. It’s one of the many tragic aspects that accompanies CRPS.

Of all the medications and pain killers, the psychology and physiotherapy, of all the mindfulness and positive thinking I do; the one thing that keeps me going is the love of my family. They are the single most important tool in my toolbox. The privilege of watching them grow, mature and be happy is the best and easiest pill for me to swallow.

The endorphins that are released by the loving touch or emotional support of my wife and children provide me with the best therapy.

My family and friends keep me grounded, they help me in ways I could never hope to describe or explain in mere words.

Some days I must be the most challenging friend, father and husband but I need to take the time to recognise them. They live this life with me – seeing their smiles, hearing their laughter, keeps me going. I am lucky to have meet my wife Rosemarie as she has stood by me through all of this, she taught me the true sense of our vow “through sickness and health”.

I have many things happening on the horizon including a Fundraising dinner in early November for my assistance dog, surgery to fit a new Spinal Cord Stimulator in late November then of course the recovery, working towards raising money for an assistance dog… and of course watching my beautiful family grow.