Disclaimer: This blog is from patient to patient, and is not intended to be medical advice, just kind words and hope delivered with love. If you or someone you know has been told that they have Multiple Sclerosis, here is encouragement from someone who understands. “Loosen up, lighten up, live it up. Don’t give up.”
Four years ago this month I received an early morning phone call from my friend and primary doctor. When I answered, she started the conversation with, “The results from your MRI are back, and you are showing signs of MS.” Ever mindful of narrative, I appreciated that she didn’t say, “You have MS.” I asked her for next steps and she suggested one of the western New York health corporations. From there I encountered an abyss…the same frustrating black hole experience that has become our health care system. I was already familiar with the ghosting, miscommunication and confusion of a portal, data and pharmaceutical-driven declining medical world, having dealt with it for 18 years in the mental health side of it. Here was its identical twin.
This time I was prepared. After leaving the mental health system in 2017, I found quick recovery from a Bipolar Disorder diagnosis by creating a customized treatment plan that included nature immersion, writing and connecting with others, all things that I value. I took charge of my own care by doing my homework and researching alternative means of coping with emotional distress that helped me see that I am not disordered at all.
So when I entered this new MS realm, I used the same approach. At my first neurologist appointment, the doctor explained that “they” don’t know the cause of MS. When I told him I was sure of what caused mine (years of emotional trauma), his academic training ignored the possibility. He knows the drugs well, however, and kindly offered me more than a dozen to choose from. I made my choice from the ones he prefaced with, “Now if you were my sister…” After three years on two different medications, I ended this therapy altogether because they were causing me secondary illness (also known as side effects).
I have had success in reducing symptoms by exploring different modalities. What works best for me are meditation, being still in nature, sound therapy and Feldenkrais. My numb hand responds well to handwriting therapy, and a good sense of humor works. I added a Chinese Medicine practitioner to my caregiver team because I appreciate her whole body, mind and spirit approach. I’ve tried different exercise programs, and I have adjusted my diet, depending on what feels right. When my body tells me to move, I do, in whatever form I am feeling in the moment. That consists of lifting small weights, free form dancing or taking a short walk. If my body tells me to take a rest, I sit, meditate or take a nap. I have found my most effective doctor to be my intuition.
The hardest part of living with MS has been dealing with all of the conflicting information, “evidence” and opinions about what causes and eases symptoms. I gauge the right formula for my wellness by listening to my body instead of “experts” who claim to have all of the answers. I know my body best, so directing my own treatment guarantees that I am getting the optimal comprehensive and compassionate care.
If I can contribute anything to the MS community, it is sharing the hope I have found from those groups and individuals who support my health journey and beliefs. If you are looking for help in the form of details or ideas, please feel free to send me an email at firstname.lastname@example.org.
And remember, “Loosen up, lighten up, live it up. Don’t give up.”