This, on top of the fatigue, the brain fog, the chemical/scent intolerance, the anxiety--all of which also seemed to be slowly getting worse.
This can't continue.
I had already been learning about how, for those with ME/CFS and similar multi-systemic, nebulous disorders, calming the nervous system is key in terms of any chance of recovery.
And I had been taking that to heart: increasing time spent in meditation, mindfulness, and nature; reducing my hours at work; reducing screen time; regular acupuncture and massage; yoga; a therapist with specific training in nervous system regulation; reconfiguring my Airbnb to be even more of a self-operating machine; breath work and vagus nerve exercises; maintaining hobbies and social connections to the best of my ability...
While necessary, these habits and practices clearly weren't sufficient.
As I wandered through my days wondering if I was missing something or if I was going to be one of the ones who just continued to get worse over time, I found myself listening to a podcast on ME/CFS recovery. In one episode, the host happened to mention a brain retraining program I'd heard of several years ago. It didn't seem like a fit at the time, and I hadn't given it much thought. Later, I'd seen it mentioned in a support & recovery group on Facebook, but at that point, I thought the practices I had in place were surely the equivalent.
Hearing it mentioned yet a third time in the podcast episode, I decided to reconsider it.
And my brain has been in rehab ever since.
The program is called the Dynamic Neural Retraining System; or, DNRS. In line with doctors and researchers like Gabor Maté, Ellie Stein, and Alex Howard, DNRS describes disorders like ME/CFS, fibromyalgia, long Covid, multiple chemical sensitivities (MCS), mast cell activation syndrome (MCAS), etc., as the nervous system being stuck in a maladaptive stress response--i.e. stuck in fight/flight/freeze. What happens when the brain is stuck in fight/flight/freeze? Excessive release of stress hormones like cortisol, leading to dysfunction in body systems like digestive, adrenal, and immune. The brain also starts to experience things as a threat that aren't really a threat (like food). And the longer the brain and nervous system are in this state, the stronger those faulty neural pathways become.
This I already knew. What I struggled with was how to get out of 'stuck.'
DNRS offers a specific protocol of practices to get the nervous system--specifically, the limbic system--out of the maladaptive stress response. Using principles of neuroplasticity, DNRS draws on practices from cognitive behaviour therapy, neurolinguistic programming, and emotional regulation to rewire the dysfunctional pathways that have developed in the brain over time.
...And it's working?!
At the time of this post, I have been doing the DNRS program for just over a month. The protocol requires commitment to doing the practices for an hour each day for a minimum of six months. That said, the program creator and coaches repeatedly mention that most people see changes and shifts well before the six-month mark. I have no idea what to expect for myself, or on what time frame.
However, in the last several weeks, I have noticed:
- Increased energy - I mean, I'm no Energizer Bunny, but I'm now able to get through the regular activities of my day without feeling like a leaden, brain-foggy mess by 3pm (which required a nap if I wanted to do anything--like make supper--during the remainder of the afternoon or evening).*
- Improved mood
- Increased tolerance to scents and chemicals - two months ago, the forest fire smoke was incapacitating. Last weekend, I went camping in the smoke-filled mountains for two days without issue.
- Increased cognitive clarity - I've noticed this most in the way I've been crushing it at word puzzles and DuoLingo lately.
- Increased presence in social activities
This is not small potatoes!** Aside from the practical benefits of feeling like a functioning human being more often, it has provided an increased hope for my own recovery.
I share this here for a couple reasons:
- Knowledge is power. We can learn so much from the stories and experiences of others.
- DNRS encourages it. One of the pillars of the program involves maintaining an elevated emotional state often to counterbalance the exacerbated negativity bias that has developed. Sharing and celebrating positive outcomes maintains hope and motivation to continue on tough days (because it's not a linear process and tough days will still happen as the brain re-configures its neural pathways).
DNRS is not a substitute for all the other work I've been doing, and the other work I've been doing is not a substitute for DNRS. Indeed, DNRS participants are encouraged to maintain healthy practices that provide safety cues to the brain, and support that elevated emotional state.
I am so looking forward to continuing to experience the rewiring of my brain and nervous system in real time. I'll let you know what I discover!
*To use the language from previous posts, it appears I have a few more spoons at my disposal.
**And gives me hope that soon there will be real potatoes!
