A Journey Not Sought

My pain journey began about two decades ago with compression fractures in my spine that were not diagnosed as such for almost a year. I do not blame my doctor for assuming that it was soft tissue damage and not ordering x rays because I could bend and though I did not yet know it, have a very high tolerance for pain.

When lots of physio did not improve my issues and things only seemed to get worse in terms of severe flare ups (10+ on a pain scale and no longer able to even lie down), everyone agreed that this was not normal healing and that something had been missed.

A wonderful local physiatrist quickly saw what was what and knew that the priority was to get ahold of the pain. So began the pharmaceutical experiments and disasters which ultimately taught me that I was sensitive to medications in general and forced me by default to embrace gentle exercise (especially walking and movement in a warm therapy pool) as my primary pain reliever.

Ablation of the nerves in a facet joint, performed by the local pain clinic of the time, was abandoned as a hoped for treatment when the nerves grew back in weeks instead of many months.

I kept trying to get back to work and my pain addled brain could not grasp why my body was not recovering as it had always done before. Normal sleep was a memory; sensory imput so exaggerated that it added to the pain. Central sensitization and fibromyalgia had set in on top of the myofascial pain. I could no longer think, find my words or remember much of anything. I lived in a constant, continual pain haze, flailing about as we looked for the ever elusive specialist who would know what to do to fix me.

Then I discovered a series of Mindfulness Based Chronic Pain Management courses run through OHIP’s telemedicine system and my life changed. Slow baby steps within this new way of being and supported by learning the power of formal meditation on the mind/body connection and how that all relates to chronic pain, set me on the path to gradual pain maintenance.

Of course, I assumed that I could then manage a successful return to work. My colleagues were so supportive and so many accommodations were made by my employer that I was sure to rally. Unfortunately, my body could not catch up, could not rise up sufficiently over my pain levels and the everlasting exhaustion that comes from living in pain to return to work even part time and heavily accommodated. This was emotionally devastating to me and it has taken me the 15 years since to accept my state of disability.

In those years, there have been other bits of success along the way...finding family doctors who have a special interest in treating chronic pain, discovering the benefits of various supplements, joining a local chronic pain support group, intramuscular stimulation to calm down the numerous trigger points, therapeutic craniosacral massage, osteopathy, CBD, LDN, TENS, Neurofeedback and Neurofield treatments, to name a few.

I recognize that I am blessed to have been able to try out and apply all of these alternative modalities for pain relief, when so many other chronic pain sufferers have yet to discover them much less be able to afford them. Over the years, I have had to do battle on many fronts with my long term disability insurance and extended health benefits provider to make them honour my coverage. This has left me with a measure of PTSD connected to any of my dealings with them and does influence my pain. It is my profound hope that someday, our government will both govern health insurance providers the way car insurance is monitored so that they cannot arbitrarily deny health benefits to those they insure by backing up their cases with “independent” medical exams done by people that they have employed themselves. Further, that advocates for chronic pain patients be provided for those unable to defend or properly represent themselves along their pain journey.

As you can now surmise, I keep many balls in the air attending to my pain, all day, everyday, and it is what I must continue to do to maintain my current level of pain management. I have now gone through enough “pain emergencies” to understand that I cannot slack off...that if my supports were to be taken away, if I could no longer afford them, I would slide back into living in that zombie-like pain haze that is no life at all.

I have great compassion for all of the chronic pain warriors (and those who love them) who find themselves still on the worst part of their pain journeys. I wish you “Bon courage” as you find your way. In the meantime, I will continue to speak out on your behalf, in the hopes that at least some of the supports that have contributed to my current level of pain management may be eventually be made accessible to all.