Learning to Re-Love Life

Last March I wasn’t doing well. I had been flared for about 9 months: most of those confined to my apartment. My mind went to dark places, darker than I ever thought possible. I felt that I wasn’t living, merely surviving. I became the victim in my own personal horror story.

Every ache, every symptom, every day, I would complain. Why me? Why won’t this end? I visited specialists at Cleveland Clinic, neurologists, lyme experts, acupuncturists, chiropractors and more. After a failed trip to the movies, I was told a wheelchair was probably my best option.

And one afternoon I was tormenting myself, reading what it was like to be confined to a wheelchair when your legs still work, and I came across something unexpected. I came across a story of a girl, like myself, who after years of failed medicines and doctors, discovered neuroplasticity and healed herself.

Instantly I thought it was snake oil…but I read on anyways. I read about Norman Doidge and his miraculous discoveries about the brains way to rewire how it fires and completely heal people with strokes, phantom limbs and more. As for POTS, the explanation goes that the brain experienced some form of trauma and for years had been in fight or flight mode, constantly firing and revving itself up more and more in a loop.

I took a leap of faith. I bought a program that specializes in neuroplasticity for people with limbic system disorders such as POTS, CFS, Fibromyalgia, anxiety and more.

The program commanded me to not complain, but instead fill my mind with positive memories whenever I experienced a symptom. It taught me to list out what I was grateful for, rather than what I resented. It told me to not predict my future, but to live my life, embracing it for what it is. I learned to take each day as it came and savor the good ones, and realize the bad ones would be over soon.

Most of all, I learned to take charge of my health. I was no longer a victim, but rather the puppet master. I chose if I would be happy and took ownership of my life.

It wasn’t easy. I didn’t see results at first because it’s not as simple as a change in attitude. My brain had to physically rewire the way it fired to teach itself that every situation was not life and death. You have no idea how hard it is to say “I feel amazing” when you’re curled around a toilet bowl with an icepack on your head. But I did it. And I continued to do it, day in and day out. I would challenge myself with triggers and teach myself to not respond.

And slowly, I began to heal. As of the day I’m writing this, I am just over 6 months into my program. I am not symptom free quite yet, but I am happy, and I have reclaimed my life.

Last weekend I went to a wedding and danced the night away, standing for a half hour at a time (unthinkable to a POTSy!). Before that, I went to Ireland, and while completely exhausted by days end, I averaged 12,000 steps each day and went out to eat for every meal. My stomach aches decreased, my migraines became less frequent, my fatigue lessened and my confidence in myself, and my ability to enjoy my life went way up.

I’ve decided I’m going to start posting successes and positives of my journey. Comment if there’s a particular aspect of my story you’d like me to elaborate on and I’ll be happy to share!