Found in Stuff.co.nz http://www.stuff.co....be-excruciating
Chronic pain means a drop of water can be excruciating
Last updated 15:36, December 12 2017
It has taken the family a long time to adjust to Dad’s life with CRPS. We all live with it, not just me.
I live with chronic pain, 24 hours a day, seven days a week, 365 days a year. I am perpetually teetering atop a dark chasm called complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy.
The ‘initiating injury’ was what I thought was an insignificant and trivial accident.
I knocked my knee on a door frame.
Do you live with an invisible illness?
Share your stories, photos and videos.
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. But then again, most people don’t develop CRPS.
* CRPS can be painfully debilitating long after the healing
* Assistant dog needed for Hamilton man living with 'invisible' pain syndrome
* No relief in life of chronic pain
* Positive life, positive me: Invisible illnesses will not rule my life
CRPS is a malfunction of the autonomic nervous system, the part of the nervous system responsible for controlling bodily functions that are not consciously directed, such as breathing, the heartbeat, digestive processes, and 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 continues to send constant pain signals, years after the original injury. The pain signals cause skin colour changes, temperature changes, inflammation and other ‘complex’ symptoms related to my medication. 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 exhaustion, insomnia, frustration and anger. I am constantly fighting against my own body.
When I have a flare I can go days without stepping out my bedroom. Even showering can be too much. Simple things such as shaving or preparing lunch are the first to go out the window. I have forgotten about date nights 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 3, so on noisy days the first thing I reach for 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. 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: catastrophising, neuropathic, impacted bowel, brain fog, paranoia, hematologic, musculoskeletal pain, mechanical hypoesthesia, among many others.
Unfortunately, I have lost count of the number of times my understanding of my condition has outstripped medical specialists’ knowledge of even simple concepts.
There are many things I still haven’t come to terms with: the fact this is a chronic condition; the fact 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 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 stress on social and loving relationships, huge ongoing financial issues, the lack of consideration and support from family and friends all contribute to the development of pain flares, anxiety and depression. I have found myself becoming swamped, dejected, and hopeless.
I know why CRPS is dubbed the ‘suicide disease’. Some people I know are desperate to halt the incessant pain by ending their life. It’s one of the many tragic aspects of CRPS.
But I have things on the horizon, including surgery to fit a new spinal cord stimulator and fundraising for an assistance dog.
Of all the medications and pain killers, the psychology and physiotherapy, the mindfulness and positive thinking, the one thing that keeps me going is the love of my family. The privilege of watching them grow and be happy is the best and easiest pill for me to swallow.
My family and friends keep me grounded, they help me in ways I could never hope to describe 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. I am lucky to have met my wife Rosemarie, she has taught me the true sense of our vow 'through sickness and health'.
- Stuff Nation