Bring in the light - the rollercoaster of "knowing" my pain

I have had some time to reflect on my very long history with my chronic pain. From diagnosis to the present, it is well over 30 years. Of course, there have been many ups and downs along the way. There have been times when I have known something for certain only to later form another viewpoint. Sometimes it comes with education, sometimes via support from my community and sometimes from looking internally. Learning, re-learning and starting over.

Building this knowledge has been a rollercoaster of emotions and lessons.

At the bottom of the rollercoaster (AKA Darkest Days): Pain was like being trapped in a dark tunnel. No light, no fresh air, no happiness, no escape. When I was in pain, I would withdraw to this dark place accompanied only by my disturbed headspace of negative thoughts, blaming myself for past mistakes or worrying about the future. I accepted these thoughts as facts and could see no path towards the light. I was drowning in this depressive blackness. I was so caught up in my own pain, physical and emotional, it was very hard to see anything beyond the darkness. I was blinded to the impact I was having on others, selfish and unaware of anyone but myself. But the problem was, even though I felt isolated and alone, looking back, I had taken my loved ones down into that dark place with me.  

Gaining momentum (AKA Welcome to Pain Science 101): Attending the self pain management course in 2009 was a big turning point for me. I learnt many tools and skills to change my approach to pain. I learnt pacing, was introduced to mindfulness and I became aware of how much my mindset influenced my experience. I put these learnings into action and, for the most part, proceeded to live well with chronic pain. 

Sharp dips (AKA Re-Learning): In early 2019, I completed a half marathon, but a few months later a flare up came and stayed. My ability to manage my pain shifted. I fell into past habits, I became trapped by fear again. Add in a global pandemic and last year felt very hard. I found myself snowballing once again. All that information I thought I "knew", it went out the window - I forgot it all. This was me, a person who had for many years professed live well and #SelfManageChronicPain. Was I though? Really? Managing? So, back to the drawing board I went. 

More realisations (AKA Feel to Heal): I knew I needed some help. A lifestyle based exercise and education program materialised just when I needed it. Through this process, I have recently been examining many parts of my inner world, asking myself questions about my pain, my future, examining my values and purpose.  Much of this work revolves around the question - how will I get through this? What changes do I need to make? I have been pausing, pulling back from distractions to turn inwards...I am getting closer to the answer. And these days, I am saying to myself less of the "I know..." and more of the "I feel...". 

The rush (AKA The Secret? Maybe?): When you are on a rollercoaster and it is grinding, clanking and slowly creeping towards the top, you know what is coming. Your pace quickens, a sharp intake of breath. It is equally scary and thrilling. The anticipation. I feel like I am right there, on the cusp. The exhilaration of the rush downwards is right there in my grasp. I feel like I am so close. 

What has made me feel this way?

1. Working out what I want. I have always been very focused on pain. Pain as a measurement tool, Pain as a trigger, Pain as a reason. That feeling of being in that dark place - that was definitely to be avoided. So often my goals, my plans, my dreams involved some aspect of avoidance. I even used it as a motivating factor in the early days - my "WHY" was clear - "no more darkest days". No more being at the bottom of the rollercoaster - or falling in that hole in the road (this is a gloriously pertinent poem by Portia Nelson). Recently, my life coach (quick shout out to the amazing Anna Baylis) asked me to flip the wording - focus on what I DO want. And my answer came quickly. A while ago, we went on a family bushwalk to a local (secret!) waterfall. I was very mindful on the walk, stopping to examine with awe the wonders of the natural environment, totally engaged in the company of my husband and kids, revelling and lingering in the joy of the experience. Pain was there too, just a physical feeling in my body. This is it. This is what I want. More waterfall days!
2. Working out who I am. My twisted, metal-shackled spine is a part of who I am. My challenges, my pain, all a part of what makes me uniquely and imperfectly perfect. While I understood the importance of acceptance, I have only recently come closer to this crucial realisation. To truly accept and love myself, means accepting and loving all parts of me. My pain is not something to be managed, tamed, compartmentalised. I need to finally, really listen to what my body is telling me. What is my pain trying to tell me? I am coming to realise, it is this -  Connection, Compassion - loving all of me, as I am, in this moment. 
3. Working out what needs to go. A few more blog posts to follow on this topic. Just as a butterfly sheds its cocoon to transform, there are a few parts of the old me that need to go. Break up letters will need to be written. But, as a heads up, "achievement", "doing" and "control", you have been warned - you are in my cross hairs. To truly soar, I need to welcome in kindness, patience, love and awareness. 

So, there you have it, I have summarised my 30+ year history with pain into one rollercoaster of a ride!

And, I am not done yet - #AlwaysLearning

The person in the Mirror

 A quote that real hit me in the feels was this:

 

If you are looking for that one person to change your life, look in the mirror. 

 

For so long I was desperately seeking a cure, a magic pill, someone (anyone!?) to take away my pain. I never realised there was so much that I could do that would impact my experience of pain. Often we search outside of ourselves for help, redemption, reassurance, satisfaction. We actually have much more control over these things than we realise – if only we choose to seek it and believe it. 

 

Mindfulness has helped me realise this. And it comes from the “without judgement” part of being aware of my present moment experiences. In doing so I can be aware of the things within my control and those that are influenced by or forced upon me by others. Even just the ability to identify my thoughts and not allow them to carry me off into dark places. 

Yet, sometimes having all the control can also be challenging. There are times when I feel tired, overwhelmed and convinced I cannot do it. I notice these thoughts. And I will look back at that face in the mirror and tell myself. Just do the next right thing. 

 

Recently my son was talking with his peers at school about social injustice. Apparently, the whole class was fired up about a number of problems they saw in our world. I am grateful to hear that their teacher had directed the conversation towards solutions. He had asked me that night what can one person do to make a difference. He felt numbed into inaction by the feeling of overwhelm at the enormity of the problems they had discussed. We talked at length about how one person can make a difference. I used myself as an example, by choosing to self manage my pain I was able make massive changes in my daily life. I was able to return to work, to re-connect with friends and family, to pick myself up and starting living fully once again. I use this story and my experiences to share with others hoping that somewhere, someone might read some of my reflections and make their own changes. 

 

Another example I told him about was my Dad. At age 80 and somewhat sparked by recent lockdowns, he has gotten into Facebook. He has been sharing some tunes he has made online. He has compiled them into a CD and is sending it to people, asking them to pass on the favour by either doing a random act of kindness or contributing to their local charity. This is one person, doing something and making a difference. Paying it forward.

 

One person, making a commitment to themselves, to act, to make a change. It is possible. 

 

I have experienced this first hand, big changes in our life come when we start with the person in the mirror. Be kind to that person because they are always there. As Jon Kabat-Zinn says “wherever you go, there you are". There’s no hiding from that person. So why not be their friend, their ally, their cheerleader.