A few weeks ago, I posted about being interviewed for a new podcast called Chronically Empowered. About the same time, I did what I guess most people would do: humble-brag. I sent the link to my parents and two younger sisters, saying something like “I’ve started this blog where I’m writing about my migraines, and I was recently interviewed – thought you might like to watch.”
Several days later, my youngest sister replied to say she had watched the whole 45 minutes and then read some of my blog posts. She said that it inspired her to write a response.
I read her email, had a little cry, and felt heartily ashamed of myself.
I had been so focused on my own pain-nightmare, that I forgot that other people were struggling with their own pain problems. Not forgot… just not prioritized, perhaps… not taken the time or energy to properly recognize their stories. Chronic pain is all-consuming, I used to tell myself. But now I realize I should rewrite that narrative: chronic pain CAN BE all-consuming. It is a choice… and it took an email from my little sister to remind me that the choice is mine.
After a few more tears and a talk with my sister – at her suggestion – here is her email:
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Although the youngest of three, due to the genetic lottery, I was the tallest, largest and strongest of the three. This difference became part of my early identity. If my eldest sister was the smart one and the next eldest was the caring one, I guess I was just more of a physical entity, relying on this big strong body to carry me around.
And so it went that I think I became at least reasonably aware of my physical self. I am absolutely not an athlete or good at physical activity, but my body has always been strong. I learned early that your body can hurt when you use it “hard” but also realized early that finding a way to work with pain just became part of life.
Sometimes it was just small pains, twisted ankles, sprained wrists, fingers bent backwards from basketball (not good), but I always had a sense of having some control over how I experienced that pain.
Then before I knew it, I was 26 and about to give birth. At that moment my ability to talk myself out of experiencing extreme pain, or rather, convincing myself that it “could always be worse” became my superpower and I had that baby and three more naturally, experiencing the worst pain I had ever had but still feeling somehow in control of that pain.
So, I progressed in life with this same empowered “pain brain” approach of you won’t get the better of me.
Then in the last 10 years, my body started hurting more. My life and work is quite physical. Things would ache more, muscles getting sore, pains from overusing my body. Some part of me would hurt every day. Eventually I became aware that although other pains would come and go, I was always living with abdominal discomfort. My whole journey of “I lived with a giant fibroid in my uterus for 5 years and it affected every aspect of my life” is a story for another day, but what it also was, was the beginning of my journey with chronic discomfort and pain.
I was blessed that the issue was finally resolved by surgery, but it has now been replaced with a diagnoses of arthritis in the spine and other back issues that suggest some type of pain may persist in some form for the rest of my life.
So, for me personally, it has been a benefit and a blessing to have been able to maintain some control over how I experience pain. That perhaps I have always been mindful of my body and its relationship with pain, and yet…
Even at this most resilient end of the pain spectrum, it is still exhausting on so many levels to experience physical discomfort that almost never abates. The relentlessness of never-ending helplessness of chasing a pain free status quo is something I struggle with.
Rather than moving forward, I think I was just about to fall into the trap of convincing myself that I am just going to have to use my ability to deal with pain to put up with it. Like just give in to it.
I needed my big sister to remind me that there is a bit more to it than just the pain side and there is always another step to take. I have always sort of measured my life moves by “inchstones” rather than “milestones”, to focus on the tiny wins. It has been a general life strategy that has kept me (pain aside) feeling extraordinarily fulfilled despite not really having a lot to show for it. I just needed a one inch kick to get me back on the roll again.
So, I can fully attest to and support the idea of people taking back even the tiniest part of their power over pain.
I am also a massive advocate of tiny steps. I like to think I might have partly helped my children to success by encouraging them when things are difficult (in whatever way they present), to just focus on one small thing at a time. I can’t tell you how many times I’ve used variations on the advice “don’t let the fear of something not working paralyse you from doing anything at all”. Just make one little move. Then another.
That advice should apply to how we face chronic pain and it’s about time I took my own advice.
The irony that it took my sister to remind me to follow my own life principals is not lost on me.
Thank you for the 1-inch kick.
With love
D
PS: hearing, seeing and listening to how positive and forward moving you are and knowing that you are suffering less than you were makes me extraordinarily happy.
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And thank YOU dear D, for your openness and strength, and reminding me of the importance of family… and to keep helping others whilst reminding them (and myself) it is never weak to ask for help.
Take care everyone, Linda x
The Mindful Migraine 
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