Changing Seasons

This past summer, my garden was mostly flowers, as I only had about 5-6 vegetables remaining in my food repertoire. I still made room for those veggies in the raised bed; surrounding them with marigolds, poppies, and sweet peas. Then, promptly after sowing     the seeds, I had a flare that took most of those remaining vegetables off my list.

As I watched sprouts break through the soil a few weeks later, I resigned myself to the fact that it would all go to friends, or the office, or the food bank, come harvest time.

I started my DNRS brain retraining in mid-June; flowers were coming into full bloom, the lettuce was starting to look like lettuce, the parsley was just starting to get tall. During the summer, I did many of my 'rounds' (the set of retraining practices I do each day) in my back yard, often facing the garden; my bare feet in the cool grass, grounding me and connecting me to nature as I calmed my limbic system.

I was growing vegetables and neurons at the same time.

Iceberg lettuce was one of the vegetables I was still eating; I grew it for the first time this year, and I loved being able to grab leaves at will to add to my meals (also, non-mass-produced iceberg lettuce has so much more flavour!).

The Brussels sprouts never sprouted, so their leafy stalks got yanked.

The rutabaga found homes among my coworkers.

Rhubarb was shared with one friend.

Raspberries with another.

I found I loved having the energy to work the garden, even if I wasn't eating most of it. 

By late summer, the only vegetable remaining in the ground was the carrots. I just couldn't part with them. I pulled them on a warm afternoon in September, carefully scrubbing, slicing, blanching, bagging, and then tucking them into the freezer.

Since starting my DNRS program, I've actually nibbled on small, single bites of a few different foods here and there, though my limbic system was clear each time that it was still outside my training zone. I knew that many people in the program had been able to start reintroducing foods almost immediately, while many others didn't even start reintroductions until after the initial 6-month training period. I was starting to get the sense that my nervous system might be in the latter category.

Accepting this was almost as hard to digest as food.

But I still wanted to try.

A couple weeks ago, I pulled a slice of carrot from one of the bags in the freezer. Mixed it into my meal. And I don't know if it was the love and care that went into growing them, or the new neural pathways, or both, but my limbic system considered it from all angles, and said,

"Okay 🙂"

via GIPHY

Halfway Through Brain Retraining

I titled this post "Halfway Through Brain Retraining" and not "Halfway Through Brain Rewiring" on purpose. While the minimum length of DNRS practices is 6 months, many who follow the DNRS program continue their practices at varying intensity for longer in order to rewire their nervous system to a state that's considered recovered.

I will definitely be practicing and re-wiring for longer than 6 months.

However, as far as the mandatory one hour of brain-retraining practices that I must do each day to set my limbic system firmly on the road to recovery, I am halfway through!

Part of the brain retraining involves incremental exposure to previous triggers to help the limbic system remember that things like scented hand soap, going on a hike, or eating vegetables, are not dangerous. Well, I made an 'oops' a few weeks ago. I overwhelmed my limbic system, believing it was ready for a certain level of challenge when it was not--at least, certainly not under the circumstances in which I challenged it.

The 'oops'es are to be expected; I am re-negotiating my relationship with my nervous system, some facets of which have been my "normal" for over 30 years! There's bound to be some missteps along the way. Insert flare-up here.

It was a long, painful, uncomfortable several days, I'll give you that.

And yet.

In psychology and neuroscience there is something called the Window of Tolerance (WOT). It's essentially our capacity to handle everyday stresses and challenging situations. For someone whose limbic system has become stuck in a stress response (🙋🏻‍♀️), the WOT is smaller, meaning it doesn't take much to go from "I got this" to "I don't got this."

It was actually towards the end of August that I noticed my WOT seemed to have expanded. I'd had a handful of somewhat aggravating situations over the course of a couple weeks that, in the past, would have each triggered an emotional response much greater than what the situation called for--essentially falling out of the Window. But they didn't--each of the situations was like, "well, darn. Okay, Plan B. No big deal. I got this."

I was so proud of my nervous system!

I didn't mention it in my 2-month update, because it still seemed surreal. Did my Window just get bigger? Y'know, it does look wider. The ledge seems thicker too. I'm sure there's more light coming in...

In the past, nothing sent me spiralling emotionally like a flare-up; they were unpredictable, painful, and each one took more foods off my tolerance list. Not only would I fall out of the Window, it felt like I also landed in the thorns of the rosebush below. Even at my 'best' over the last 5-6 years, I've spent most of my time sitting on the Window sill, legs dangling over the edge.

With my recent 'oops,' I certainly fell out of the Window; anyone would. However, rather than drop to the thorny ground below, I managed to grasp the sturdier Window ledge with my hands on the way down. I hung there for a minute, facing to the wall. "Damnit." Took a deep breath. Found my feet and placed them underneath me. And then, with a strength I haven't had in some time, climbed back in through the Window. 

I sat on the ledge for a little bit, as I caught my breath and brushed the dirt off my hands.

And then I made my way back to standing inside the window, looking out and admiring the view. 

I don't know that this analogy does justice to the significance of this milestone. Physical well-being aside, the hardest part of the last several years has been the increased volatility of my emotions: extreme emotional reactions to any level of stress, with poor recovery time;* not really ever feeling at ease; and certainly not feeling like 'me.'

To see the change in my response to mild stressors is one thing. To see the change in my response to one of my biggest stressors leaves me in a little bit of awe, to be honest.

I really am proud of my nervous system--and pretty proud of me as well.

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A post shared by Zulaikha 🌈✨💌💗 A Dose of Reminders ✧.* (@adoseofreminders)

*i.e. irritability or anxiety or ruminating long after the stressful event is over--this is a sign of a nervous system in a toxic/chronic stress state.

Brain Re-training Update at 2 Months

So, I'm two months into re-wiring my limbic system. While the minimum length of time I must commit to the practices of the DNRS program is 60 minutes daily for 6 months, the program developers and coaches state that many people notice changes within the first few weeks.

DNRS makes it very clear that recovery is not linear. There will be improvements, some large, some smaller, sometimes the body will take a step backwards as the limbic system tries to communicate using old neural pathways.

(c) Photos by Gina

I acknowledged some of the changes I had noticed by the one-month mark--mostly around improvements in energy, mood, and cognition. I've continued to remain diligent in my re-training practices, and I was curious to see where they would take me next.

I have certainly continued to enjoy the extra energy in my days; I can't recall the last time I needed a nap (!). Additionally, even after I engage in modestly strenuous tasks, I find the rest period needed is shorter; and I no longer feel at constant risk of a crash. I even managed to stay up late to watch the Perseids recently, without significant repercussions the following day.

I like having more spoons.

Over the last month, I have continued to notice shifts. A few that are more personal than I feel comfortable sharing, but I will comment on two:

First, I seem to be losing less hair. A couple years ago, I noticed there seemed to be a larger amount of hair in the shower trap after shampooing than I recall at any other point in time. I presumed this was related to a lack of nutrition. However, there is noticeably less hair in the shower trap (and in my brush) these days. My diet has not [yet] changed, my hair-washing and styling habits haven't changed, the quality of shampoo and conditioner hasn't changed... so I can only assume this is another benefit of my slowly-healing limbic system.

Second, I am experiencing fewer headaches, and less severity of pain when they occur. Over the last 2-3 years, OTC pain-relievers either didn't work or weren't tolerated, so to say that is a welcome change is an understatement!

Again, I share this journey with you for a few reasons. Part of the DNRS re-training involves creating as many positive associations and cues of safety in the brain as possible. Spending time in an elevated emotional state helps the brain get out of the fight/flight in which it's been stuck, and back to safe/social. Documenting my journey can help me remember that I'm making progress on those days where the non-linear aspect of recovery feels all too real.

Documenting is also a way to celebrate, both alone and with others. Friends and peers have commented that there's a vibrance in my presence, a freshness in my face. When I've shared what I'm noticing in my body, they have celebrated with me. This empathy is a piece of the recovery too.

And lastly, as I was reminded by a friend, but didn't articulate as clearly in my first post, my story may become someone else's survival guide. I have been poring through innumerable 'survival guides' over the last five years, and it has finally brought me here. Perhaps I can be the turning point for someone else down the road.

The Road[s] to Recovery are Pathways in My Brain

This can't continue, I thought. Yet another GI flare from accidental ingestion of a trigger substance, and a few more foods became collateral damage in the process; leaving me with a total of 10 foods my gut can handle. And that includes baking soda and salt.

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:

1. Knowledge is power. We can learn so much from the stories and experiences of others.
2. 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!