Fibromyalgia: Living with Chronic Pain

Fibromyalgia: Living with Chronic Pain

“In three words I can sum up everything I’ve learned about life: it goes on”, Robert Frost

I have frequently cited the works of adiemusfree from her HealthSkills Blog. She has become my guru for updates on research regarding pain. I take hope because of her personal struggles with the issues surrounding living  with acceptance in lieu of catastrophising. Daily pain is exhausting, depletes our energy, leaves us with a sense of hopelessness. Each new symptom (and there are many) can be like taking one step forward and two backward. How do we continue? As she says in her October 18/15 blog: “After all, life doesn’t stop just because pain is a daily companion”. The same could be said of the other myriad of symptoms we experience.

Chronic pain has become one of the leading reasons for doctor’s visits, work day losses, increases of pharmaceutical approaches for controlling the symptoms and the emergence of Pain Clinics. Health care professionals are trying many strategies to ease the suffering of millions of those of us with a less than good quality of life. Among them is the American law professor, Toni Bernhard, who documents her journey through the maze of adapting to and living fully with chronic illness. Her newest book is a practical and honest account of the ways in which a person living with chronic illness can turn her/his life around. As I have discussed so frequently Mindfulness Meditation is integral to her work.

It would seem that among the experts of chronic pain, the advice is very similar: exercise moderately when able, meditate, learn to say “no”, avoid being around friends and family who do not support you, always keep in mind the idea of ‘pacing’ yourself, practice self compassion and above all learn to live, rather than to be subject to defining oneself as PAIN! Living in the past or looking into the future is counterproductive. Being in the moment is the only way to live life fully.

It has taken me a long time to stop thinking like an invalid, rather than to acknowledge that I will live with pain but it will not define me. I will continue to do things I enjoy, with limitations, rather than waiting for the pain and fatigue to overtake me. But, oftentimes I give in to hopelessness particularly when my energy is depleted. It is somewhat difficult to accept that monitoring myself is the “new normal”.

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Adiemusfree, the author of HealthSkills Blog writes : “We all know that having pain can act as a disincentive to doing things. What’s less clear is how, when a person is in chronic pain, life can continue.” (October 18, 2015). She goes on to say how complicated it is to work around what is considered to be “normal” within daily living. Life never proceeds along a linear straight path without daily fluctuations. What is normal on a snowy, blustery, isolating day differs from a lovely autumn day when getting around outside is less problematic. Some things are beyond our control; while others are of our own doing. Trying to organize a dinner party for a dozen family friends at Thanksgiving is a major undertaking. But taking a drive in the countryside to leisurely appreciate the beauty of the day can be soothing. Yet, both are what we might enjoy and having to exclude the one that would cause stress and anxiety might produce feelings of guilt and sadness.

This time of the year when there are such things are “scarecrow festivals” that make one smile can be just the medicine one might need.

But serving and preparing a dinner for guests can result in catastrophic thinking as one tries to be the perfect host. Yes, a gorgeous pie made for our Canadian Thanksgiving dinner in October. Granted it was made by my granddaughter, nonetheless the work required for a dinner of twelve can be overwhelming.  Sensibly, I was able to say that  I was tired (the fatigue that only those who have it can understand it) and would be the only person present who would not be doing any of the work. In the past I would have exhausted myself trying to manage the entire affair. It takes a great deal of courage to be present at an occasion and not organize and take care of others. It takes old age to recognize that I can do both. Go for a ride to see the colours; go to a Thanksgiving dinner and sit back, watching others, being thankful we can be there and not feel overwhelmed with anxiety about how we should take charge.

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After my month long participation in June at the Pain Clinic, I slowly began to realize that those of us with chronic pain fit a profile that is very similar to one another. Many of us are prone to catastrophizing about our symptoms, often give in to depression following a bout of anxiety over some new experience of pain, and generally cannot remember that life varies often from hour to hour, certainly day to day. That there are challenges for us there is little doubt, but the term chronic implies that it is permanent, without any joy left to be looking forward to, little wonder we give in to a sense of despair. Anxiety- looking to the future with a catastrophic outlook. Depression- looking back on the past wishing we could change what we have become. It is not living in the present moment.

How many of us have fearful thoughts about the future? I do often. In Mindful Meditation seminars we are taught that thoughts are not facts. Believing I cannot ever again undertake a task that gives me joy is a challenge I face daily. We often have to compromise but sometimes the brilliant ways in which we have modified our accomplishments can be very satisfying.

I have been reading how Buddhism defines destructive emotions as passion, aggression and ignorance. I can relate this to fibromyalgia. Unless we become the expert of our own lives we will continue to suffer from ignorance about this syndrome with which we have become afflicted. It is the inability to see the truth about our relationship to this over-stimulated central nervous system. If we continue to treat fibromyalgia with aggression rather than kindly as part of our Self then we only exacerbate the symptoms. Without self compassion we will continue to treat ourselves in ways that continue to cause more suffering. Then there is passion which is the desire for a different life than what we have.  I am not a Buddhist nor an expert on the philosophy, but one of the basic concepts is that of suffering. It can be translated into anxiety or stress, the mental form of which can be suffering from growing old and illness both of which are endemic to fibromyalgia as we wonder if this pain will last forever and how we will manage in the future. We all suffer, it is part of the human condition. However, often fleetingly, there is joy.

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So, on this grey November day when the leaves have almost all fallen from the trees and we wait for the first snows (at least in my part of the world) I have to practice what I preach. Stop and enjoy some of the beauty still left from the autum colours.

References:

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