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.
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
- 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