By Sophia, Emilyn community writer
If you look up the definition of an alchemist, you might read about early forms of chemists that could convert base metals into noble ones, for example, lead into gold.
People living with MS are alchemists, too. We are transmuting matters of the mind every day. Transforming fear into love, anger into kindness, uncertainty into acceptance, and yes, pain into strength and resilience. Every single day.
Puzzling together just the right constellation of words to describe what my pain feels like can be a challenging task which has me come face to face with my suffering.
My diagnosis came with an array of symptoms. A numb leg was one of them. After nearly a year of pins and needles and numbness, the pain began. I was patient with it at the beginning but after a few weeks, I was experiencing debilitating pain. My neurologist explained what neuropathy is (nerve damage) and prescribed medication, physical therapy, and recommended staying away from stress.
The level of pain usually determines what sort of day I can expect to navigate through. I gave myself a scale: 1 to 10. Today, it is at a 7.
My body is in a civil war. My mind, however, is the peace mediator and still has the capacity of making intentional choices. I try my best to take charge of the little control I do have and begin my quest.
One of the things that has helped me, even on my worst days, is to actually be grateful that it is me. I don't even want to contemplate how I would feel if I knew that a loved one was subjected to this pain. My wish would be to take the pain from them and do exactly what is happening now – be the one to live with it. It gives me a different perspective on this experience.
I follow my doctor's recommendations. Take pain medication and slowly increase the dose, hoping it will work, and go to physical therapy. Now, on a good day, my scale is at a 4 or even a 3.
The most difficult and best advice I have received so far has been to be kind to myself. A worrying mind makes suffering worse. Treat and talk to yourself like you would a good friend. I slowly introduced some self-compassion into my life.
Collect uplifting quotes, lean on friends (they are gold!), humour, beauty – flowers, an epic meal, a good book or a silent walk.
The list is endless. Thankfully.
As a teacher, my students are enabling me a distraction from pain. They are my focus and my mind has a chance to not think about the pain but rather about explaining the wonders of our Earth and how it all came to be. There were times, however, when pain dominated my mood and it was hard to distract myself with a leg on fire.
Depression started to creep in. After nearly three months of accumulating pain and my zest for life diminishing, I sought out a Psychologist, specifically one experienced in Cognitive Behaviour Therapy (CBT).
It took a few sessions of talk therapy to purge the experience of being diagnosed with MS at the start of a global health pandemic and my treatment being delayed several months due to the first lockdown.
My psychologist introduced pain management which included him guiding me through mindfulness meditation (non-judgmental awareness of the present moment), breathing exercises and visualisations. For example, imagining turning down the pain and turning up the relaxation knob, or of lighting an oil lamp and turning the flame further up and then dimming it. Taking the mind, thoughts and focus away from the pain helps to tame it.
Pain is so unpleasant. No one wants it but many of us live with this reality. The comfort is that there are so many diverse options to support us. Each one of us needs to assemble our own concoction of what works for our needs. Being my personal alchemist has taken me a long time and a lot of trial and error. In fact, I am still working on it each day. Step by step. Walking lightly.
For now, I do know this: pain takes a backseat when we find ways to not give it our full attention. I am learning how to cultivate acceptance and accommodate this unexpected guest.
By Sophia, a member of Emilyn's community, is a Greek sociologist, educator and artist. She was diagnosed with RRMS in February of 2020.
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