Step 1 writing on chronic pain

September 12, 2012

Today I decided to start writing a narrative of my pain story that I hope to share on the blog.  I have been putting this off because it is time-consuming and can be painful to look back at the difficult periods in my life.  I am including information about periods of my life when I had physical and emotional pain and my thoughts around it.

I am surprised at how helpful this has been.  I am able to see some links that I didn’t really think about before.  Initially I was thinking I didn’t have much pain as a child, since I rarely missed school.  As I started to write more, I can remember several situations where there was both pain and shame around the pain.

The thought of writing and sharing a personal story can be terrifying.  I can feel the vulnerability of sharing such personal information.  Even though I have been less specific in situations where it involves other people, I am sharing honestly my own thoughts and feelings.  I do believe that the healing comes from looking at the truth of a situation, and being able to think and talk about it without shame.  I hope that each of us can learn to honor and even love the parts of our stories that make us uniquely us.

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Step 1 – what I can’t control about having chronic pain and fibromyalgia

September 12, 2012

A big part of step one is understanding what we can’t control, looking at our thoughts, and the losses caused by our pain.  I have created several lists that reflect on these questions.  I find that looking directly into my pain, is often the best way for me to learn to live with my losses and find hope.

There are many things I can not control about having chronic pain and fibromyalgia.  Below is my list of things I can’t completely control.  Some of these may not be directly related to chronic pain, but can impact it regardless.

  • Pain level – having pain spasms, sensitivity to touch, back pain, trigger points, myofascial pain, tingling pain
  • Fatigue level – being tired, lack of energy, not able to focus
  • Medical world – doctors, nurses, pharmacist, lab technicians, finding a cure, medication impact
  • Weather – rain, heat, humidity
  • Relationships – what others think, what others feel, how they respond to me
  • Initial thoughts and emotional triggers – overreacting, taking things personally, losses

Consequences/impact of having chronic pain and fibromyalgia.

  • Loss of number of relationships I can keep up with
  • Loss of time being physically productive
  • Loss of career options, money
  • Additional stress, harm to body because of medications
  • Intensified other problems, more difficult to manage
  • Conflict with other people who didn’t believe I had pain, or thought I caused it
  • Initially didn’t have coping skills to deal with it
  • More time in escaping behaviors
  • Loss of self-esteem and sense of value in our culture
  • Could be more self-centered in dealing with pain
  • Less stable, less predictable, harder to plan
  • Difficulty keeping up with house, young children, and responsibilities
  • More needy of others
  • Trust in prayer, impacted view of God

Destructive thoughts

  • I am not worthy
  • I caused my pain
  • People don’t care
  • God is punishing me
  • People are better without me
  • Expecting things from others they can’t or won’t give
  • There is no hope
  • I am alone
  • No one understands
  • I can’t live like this
  • I need a cure, I need an answer
  • I need to escape
  • I will do anything to get rid of my pain
  • There is no hope

Fortunately this is just the beginning.  Though it is painful to create these list, I hope it will help others recognize the struggles and losses of dealing with chronic pain.  The chronic pain may always be a part of me, but it doesn’t have to always create the destructive thoughts I have added to this list.  Though not a part of step 1 I will end with a more hopeful list.

Positive thoughts of having chronic pain

  • I can make it
  • I am valuable
  • I am stronger
  • My relationships are deeper
  • I have more compassion
  • I am kinder, more vulnerable
  • I prioritize my time better
  • I can say no when I need to
  • I have much to give to others
  • I am loved and can find the resources I need
  • I am not alone, there are many people who struggle too
  • My higher power cares and is here for me
  • I can still do what is important even if it looks different
  • I can find a new career path

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