ME/CFS Recovery Story

advocacy Jan 31, 2022
Eleanor Stein, MD FRCP(C)
ME/CFS Recovery Story
8:38
 

 This is a story written by Mellissa, a person managing the symptoms of ME/CFS and comorbidities and how her life was transformed by Dr. Stein’s educational programs. Introducing self-management and neuroplasticity led Mellissa on a path of self-discovery resulting in improved health. Mellissa is now starting her own business to help others.  We hope this will help inspire hope with living with these hard to diagnose illnesses.

Welcome Home

By Mellissa Bell

“The greatest thing, then, in all education, is to make our nervous system our ally, as opposed to our enemy.”  William James

The concept and practice of neuroplasticity has been deeply transformational in my life. If you had asked me 10 years ago, I would never have believed that working with my nervous system, befriending my body, and learning how to feel safe would change everything. In fact, I thought it was alien-level crazy talk when Ellie presented the first bits of neuroplastic learning to a group I was in, close to a decade ago now. It has been rather a long journey of discovery. 

Ellie and I go WAY back to the early days of her practice when I was a newly diagnosed, very ill young mom with two toddlers at home. I had been moderately unwell for many years, but things went straight downhill after my second pregnancy. Extreme pain and fatigue would leave me suddenly feeling like my body would just collapse. Brain fog was my constant companion and frustration to everyone in my life when I kept forgetting what I was talking about mid-sentence and could not, for the life of me, remember who phoned 5 minutes ago! I had a continual sore throat and postnasal drip, insanely dry eyes, migraines, food and chemical sensitivities, racing heart and anemia. Having all these problems without any sense of what was going on made me feel anxious and depressed most of the time and I was dangling pretty darn close to the edge emotionally. There really are no words that could illustrate how impossible it felt to be a wife and mother of two little people who desperately needed me when I had so little to give. I felt like I was disappointing everyone and I pushed myself even harder to try and make up for it, which only accelerated my downward spiral.

Like many chronic illness patients, I made pit stops at the offices of countless professionals, trying to solve the puzzle of my constantly changing myriad of health challenges. I visited specialists from Internal Medicine to Cardiology as well as a bunch of alternative medical practitioners and an impressive list of mental health therapists. I had so many tests that I long ago lost count. I tried no less than five different antidepressants, sleeping pills, anti-anxiety drugs, pain meds and natural supplements all without much success. Eventually, after multiple visits to my family doctor, my geneticist and Dr. Stein, my rather complex and lengthy catalogue of diagnoses were settled on: FM/ME/CFS, Ehlers-Danlos Syndrome (EDS) and early-onset osteoarthritis (OA). Add in Environmental Sensitivity (ES), POTS, low blood pressure and Irritable Bowel Syndrome (IBS), and you need a degree in acronyms just to read my medical reports! 

In the early 2010s, I took a leave from my part-time job, hoping things might improve (spoiler alert:  they didn’t!) I was barely surviving through a carefully crafted set of skills (AKA dragging myself out of bed in the morning, enduring very intense crash cycles and a high focus on trying not to pass out from the smell of chemicals everywhere I went.) I was a ninja-level master of life in survival mode, subsisting on a diet of adrenaline, hypervigilance, and disembodiment. 

Stuck in a rut as I was, I just could not believe that my awareness could change my biology. The thought of it made me feel defensive and irritated. If it was MY responses and MY beliefs that were somehow contributing to MY symptoms, then maybe it was MY fault that I couldn’t change. But you know how sometimes when you are resistant to something it is because a part of you somewhere realizes there is something you really need to know, even though you aren’t quite ready to accept it yet? And… it keeps coming back to you, REPEATEDLY, until you pay attention? 

As a little experiment, I decided to try a few things myself. And to my utter amazement, I started to notice little changes; subtle shifts in how I interacted with my body and my environment. I wasn’t falling asleep during every movie; I didn’t have to run in the other direction from the cleaning aisle at the grocery store. My heart rate slowed down and my iron levels went up, I didn’t feel anxious and depressed 24/7. Put all together, this started adding up to me feeling more grounded and stable. 

I joined the Neuroplasticity in Action group and began meeting for weekly practice with a couple of partners, and this quickly became one of the most unexpected adventures of my life. There is something quite extraordinary about inviting two nervous systems to rebuild together, in companionship. This is what psychologists call “co-regulation,” how one nervous system soothes, calms and cheers on another so that both are made more resilient in the process. It reminds us that recovery just isn’t designed to be a solo journey.

What I didn’t understand when I started out is that neuroplasticity is about more than just my mindset. Research has repeatedly shown that traumatic experiences take us out of union with our bodies, away from the feelings of confidence and goodness that we are meant to enjoy as our birthright. This is NOT our fault! We also know that a felt sense of safety is absolutely essential for the nervous system to relax enough to open up to new experiences.  We cannot pressure ourselves into a recovery state and we can’t speed up the process. We can only slowly and intentionally build security and relationships with our ways of thinking, our internal structures, our cellular patterns (epigenetics anyone?) and then invite our systems to try new ways of functioning that are healthier for us. As our bodies learn that these alternatives can be beneficial and are not going to overwhelm us, we can grow in our capacity to be vulnerable and welcome more. We become curators of steady, reliable, protected spaces in our deepest parts, and we can begin to come “home” to our truest sense of self. 

When a person has been ill for such a long time, the world feels like such an adversarial place. You never know which woman beside you at the coffee shop will be wearing strong perfume, or when the restaurant server swears there is no gluten in the dish you ordered but a few hours later your stomach says otherwise. To live with a constant sense of scarcity of internal and external resources creates a great deal of anxiety and stress for the system and is a rigid, heavy, unyielding way to exist. I knew that place for a long time. Now, having a beautiful mat resting on the front porch of my nervous system that says “welcome home, you belong here” has made ALL the difference in how I approach being alive. As a by-product, I am happy to say that my energy has improved, and my pain levels have reduced. But, full disclosure, I still can’t run a 10K, or consume copious amounts of gluten without paying for it later. It has not been the complete, televangelist style miraculous “healing” I dreamed of, and I honestly don’t know if I will ever get to the place where I have zero symptoms. 

As my health improved, I took more courses on nervous system awareness, Internal Family Systems and neuroplastic practices and other FM/ME/CFS patients started approaching me about meeting with them. I was a counsellor, mental health educator and advocate in my pre-illness life, and it was my always my intention to go back to that work “someday” when I got better. As my energy levels improved, I realized that my heart’s desire was to work with people with chronic illness, to help ease the distress and bring compassion and wisdom where I could. 

I opened Numa Coaching to fill the need for support, mentorship, advocacy and trauma-informed care for people living with chronic illness. We all need understanding, support and encouragement from someone who really gets it, deep in their bone marrow. The focus of Numa is to invite people back into relationships with their nervous systems and to build regulation and safety in simple, gentle ways, which is what I firmly believe it takes to create space for healing. If I can help people dust off the welcome mats for their own systems and savour every bit of goodness that is developing in their bodies, then I am doing all that I set out to do.  

If you are interested in my work, want to hear more of my story or just want to say hello, visit my website at numacoach.com. I write a blog on neuroplasticity and chronic illness that I hope you will find encouraging and enlightening. And if that doesn’t pique your curiosity enough, you can also find out what “Numa” means, how bad writing is related to colosseums and why I am singing songs from “The Sound of Music.” 

I wish you every possible bit of goodness in your journey.

Mellissa 

Numacoach.com