Brain Retraining, Three Years Later

Afternoon naps were a necessity,
just to function the rest of the day

I've been reflecting recently on how, just 3 years ago, my health had hit a personal rock bottom: a diagnosis of ME/CFS the year before helped explain why I spent most of my days in a brain fog; why I could barely make it through a 35-hour work-week without crashing; why someone's cologne could render me couch-bound for 2 days; why I could go for a gentle 30-min walk, but not a gentle 60-min one; and why my digestive system had stopped tolerating all but about 5 foods. The diagnosis helped explain those experiences; but it didn't make living through them any easier.

Always slender, I lost a concerning amount
of weight as food intolerances grew

As I learned everything I could about the disorder, I read that some people recover from ME/CFS, some plateau at a reduced level of functioning, and some slowly continue to get worse. Which cohort was I? Was I getting worse? Would I stabilize? Could I be one of the ones who recovered?

Turns out I could.*

The more I learned about ME/CFS, the more I noticed an increased recognition by experts that the disorder is caused by a nervous system stuck in a stress response--i.e. chronic fight/flight. Recovery required calming the nervous system.

And I felt like I had been taking that to heart: increased 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...

You can see the fatigue in my face.
Even the things I loved drained me.

While necessary, these habits and practices didn't seem to be sufficient. For me, something was still missing.

 

It turned out to be brain retraining. 

 

Through a few different people, I had heard about the Dynamic Neural Retraining System (DNRS)--a brain retraining program that promised to re-wire the neural connections in my brain that were keeping my nervous system stressed out.** Looking around at the view from rock bottom, I thought, sure, why the hell not? If it can alleviate even some of my symptoms, maybe I could at least manage the others better.

 

And in June of 2023, I began. 

• After two weeks, I stopped needing naps.
• After one month, scents and chemicals no longer immobilized me.
• After eight months, I could do physical activity at a typical level for someone my age.

The hike to this view shortly after starting DNRS did lead to a crash--
but it was half as long, and I haven't crashed since

 

Zip-lining in Costa Rica;
8 months after starting DNRS

These days, I sometimes find myself in the middle of an activity--swimming laps at the pool, pulling weeds from the garden, baking or batch-cooking--still in a measure of awe at what my body is able to do today. 

The brain-retraining I embarked on was definitely a catalyst in my recovery. However, it wasn't the only factor; and, I think it can be misleading to imply that any one thing can heal a person. When I was an active member of the DNRS forum, there were many who wrote about brain-retraining being the thing that saved them. However, what has been emphasized in any training or work I've done that's revolved around the brain and nervous system, is that healing happens in relationship. Sometimes that includes the relationship with yourself, but also the others who support you along the way--like others in an online forum, for instance; not to mention family, friends, and medical or mental health professionals. I think it can actually be dangerous to say that any one thing--brain-retraining or otherwise--is a cure-all; however, given the boost DNRS gave to my own nervous system, I get why a person might feel that way.

Backyard campfire smoke?
No problem!

For me, I feel like there was a trifecta of support that came together and really helped me gain traction towards recovery. Certainly, the DNRS brain-retraining program was a significant factor. However, before and during DNRS, and even at present, I've been doing the slower, inner work of somatic-based therapy. My therapist is trained in several body-based modalities; the longer I work with her to release stuck traumas, wounds, and emotions, the less I ever want to go back to talk therapy. Talk therapies like CBT have their place; but, the mind and body are so interconnected that we can't simply 'think' or 'talk' our way back to health. Somatic-based therapy has helped continue expanding the capacities of my nervous system, and re-establish authentic attunement to my own body.

Along with brain retraining and therapy, the third important piece for me has been a medication that helps mitigate some of my remaining digestion issues--mostly by boosting gut serotonin levels, where most of the body's serotonin comes from.

Together, those three elements have helped bring my body and mind to a place of regulation and recovery. 

I facilitate workshops for a living.
This was my first conference post-DNRS;
energizing instead of exhausting!
(Photo credit: SGC)

Am I fully recovered? I guess that depends on how you define recovery. A year from the time I started brain retraining, my symptoms had reduced to the point that I no longer met the criteria for ME/CFS--I'm not sure if that's considered recovery or remission, but given that it's a syndrome, and not a disease, I lean towards the term recovery.

That said, I'm still in the process of recovery in terms of gut healing. My repertoire of food has expanded greatly--I now have a handful of foods from each food group, as well as several herbs and spices to make flavours a bit more interesting. That said, I still pack my own meals and snacks for any event where there might be food, and the only restaurants I'm navigating at this point are places like Freshii and Chopped Leaf, where I can custom-create a salad. I take it one food at a time. However, the stress responses my body used to have to these foods is greatly diminished when they are first reintroduced; this tells me I'm doing right by my nervous system. 

Traipsed around Europe for
two weeks; no big deal

Of course, with recovery comes maintenance. The brain-retraining had a strict protocol of regulating practices and visualizations that I did 4 times a day, for a total of an hour a day, every day, for six months. After that 6-month period, there is more flexibility in how to continue with those practices, based on what the person's nervous system needs. I slowly tapered from 4 rounds of practice to 3, then 2, then 1, and one year after starting, I moved away from DNRS rounds as a part of my practice (though I still follow the DNRS protocol with each food I reintroduce).

Still, in addition to the specific brain retraining rounds, the DNRS program is based on five pillars:

1. Recognizing that one's condition is caused by limbic system dysfunction (i.e. a maladapted stress response)
2. Identifying and interrupting the thoughts, behaviours, and emotions that are associated with--and exacerbate--the limbic system dysfunction
3. Creating new neural pathways by completing the DNRS rehabilitation steps (rounds) for the minimum required duration
4. Incremental training to help the brain remember that what it previously interpreted as dangerous is actually safe (e.g. foods, physical activity, scents, etc.)
5. Elevating one's emotional state throughout the day

Selling at an outdoor art market--something I
couldn't have done just two years prior

Most of those pillars will be pillars for life. I've changed some of my habits and routines to live in a way that is more aligned with what my nervous system needs on a regular basis; and my nervous system now takes priority. In my life these days, that looks like:

• Keeping my reduced work hours for better work-life balance
• Prioritizing sleep, and honouring my circadian rhythm as best possible (because society sure won't)
• Regular physical activity--ideally outdoors
• Connecting to and communing with nature 
• Less time on screens
• Boundaries around the way I consume online content
• Honouring creative desires and pursuits (and not just photography!)
• Meditation (I'm particularly fond of yoga nidra, and guided visualizations)

Hiking mountains? Count me in!
(Photo credit: SG)

Sometimes I find myself in the company of others, and I overhear them sharing stories of long Covid, scent sensitivities, bizarre food intolerances, crippling anxiety... and I wonder if they realize they don't need to be stuck there. But there was a time when I thought I was stuck there. And I know everyone needs to come to healing in their own time and their own way. In the occasional instance that it's been appropriate to share a bit of my own journey, I have. And I hope it makes a difference.

And so I share my journey here, too, in the hopes that it will reach who it needs to. You are not alone. And there is a way out.

 

 

This is what healthy looks like

 

 *And, based on my recovery journey, part of me holds hope that the other two cohorts can recover as well. 

**DNRS is not the only brain-retraining program, though it may have been one of the originals. The others I have heard of--the Gupta Method, and Primal Trust--offer similar outcomes, but with a slightly different focus. As I understand it, DNRS focuses on neuroscience, the Gupta Method focuses on meditation and mindfulness, and Primal Trust focuses on attachment.

Six months!!!

Today marks the six-month point from when I first started my brain retraining program. And while I will continue to engage in brain retraining practises for some time, this feels like a significant milestone.

I want to share with you a bit about what this last six months has given [back to] me.

Last weekend, I had choir practice on Thursday evening--a typical Thursday evening activity. I generally get into bed a little later that evening, by the time I get home and carry through the necessities of my bedtime routine. Work as usual on Friday, and that evening, I was at a friend's place, celebrating another friend's birthday – requiring the typical social energy, and also managing the input to all sensory systems. It was a lovely evening, and great to catch up with friends. On Saturday, I typically take my mornings slow and gentle,* but was up, dressed and ready to sing with my choir at a celebration of life service that morning. It was a beautiful and emotional service. I was back at church the next day for the regular Sunday service, in which we typically sing an anthem before the sermon. Afterwards, I went for a walk with a friend to feed the birds along my favourite nature trail. All this around the regular activities of cooking, cleaning, changing over Airbnb beds, commuting to/from work, running errands, etc.

On Sunday evening, I was relaxing at home, and a slow smile crept up my face as I thought about everything I had done over those four days.

In the past, all of those activities would have flattened me by Sunday evening. To try and prevent the crash, I probably would have ducked out of some activities early, or skipped some altogether; I may have chosen to block my Airbnb for part of the weekend. And I would have spent all the in-between time trying to be as still and quiet as possible. I would have had to sacrifice joy, connection, compassion, income, hobbies, and community just to be a functional human being.

I don't have to do that anymore.

I am able to engage in the activities I want without having to clear my schedule for days on either side to pre-rest and post-rest.

Some additional impacts of the gains I've made over the last six months:

• I have been reading more books

• I can use lightly and naturally scented soaps, lotions, and shampoos

• I have returned to standing for cooking/baking, showering, washing dishes, doing make-up and hair, and during Sunday morning choir rehearsal

• My breathing and lung capacity has expanded when singing

• I have more focus and creativity at work

• I have been doing more photography work (not just taking photos, but also post-processing, as well as managing my FB & IG pages).

• I can take day trips or overnight trips, including all the driving, and step back into my regular routine when I get home.

I have just started to have success with food reintroductions, and that will continue to be the main focus of my brain re-training through 2024.

In short, I am thriving. 

*This has been true always, not just since my health changed.

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

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!

Well, That's Interesting...

I've had several Big Thoughts this week--shifting perspectives and gleaning 'aha' moments in workshops attended, books read, relationship interactions had. There is still much that I am tumbling about in my brain, and likely will be for a while.

One of these Big Thoughts struck me quite powerfully this morning. I discovered something about myself. Well, sort of. I was more reminded of two things I already knew about myself, but had never looked at together side by side. And it left me thinking, "well, that's interesting..."

I was at a workshop discussing the pedagogy of play. For those readers not entrenched in the field of early childhood education, some context: play is one of the most important things we can allow children to do if we want them to be confident, competent, successful adults. And without getting into it here, experts are trying to get this message out loud and clear, because there is a rift between those who recognize the need for a play-focused classroom, and those who continue to try and argue for an academic-focused classroom for young children.

Every play workshop I've attended includes a brief definition of play. And it is generally defined including these terms:

• Play is spontaneous
• Play is apparently purposeless
• Play is more focused on the process than any sort of product
• Play is non-literal
• Play is directed and controlled by the child
• Play is intrinsically motivated and voluntary

Any time an adult imposes any sort of agenda onto a child's play activities, they run the risk of hindering the full potential that could have come out of the experience for that child. While I am not perfect, I must say, I do consider myself a pretty darn good play-er. It is generally not hard for me to let play unfold in the child's time, in the child's way. I have had many circumstances where I've gotten right into it with a child. And then suddenly, the parent walks by, or comes in to ask me a question, and looks at the mess noise play space around us. I find myself looking back up at them, scrambling to reclaim my title of Responsible Adult by declaring, "I promise we'll clean it up when we're done."

I lose my sense of time, and I lose my sense of needing to be the adult authority figure.*

I'm a good play-er. And I know this.

Now, look at that list again. Especially bullets 1, 3, and 4. Anyone who knows me well knows that I am not a spontaneous person, I am task-oriented, and I am quite the linear/literal thinker. I struggle so much in my adult life with these character traits.Yes, yes, yes. I know there are positive aspects to each of these traits; that being said, there are so many times when embracing the 'what if' that underlies all of those traits would be so enriching.

It is just so hard to do. And I know this.

But wait.

How is it so hard for me to have these qualities in my daily, adult activities, and yet it is so easy to do when I'm on the floor with a child?...

Well, that's interesting...

I do not have an answer for you. This revelation just happened this morning. But I wonder something. Research shows that when children are engaged in play, they have the ability to step beyond their zone of proximal development. They are able to use language, take perspectives, and act cognitively at levels up to two years ahead of where they show themselves to be when assessed outside of a play experience. They can do things in play that they can't otherwise do.

Maybe it's not so different for adults.

In children, mind you, abilities acquired in play do eventually transfer into abilities that can be carried out in their other daily activities. Because their brains are still growing and new neuron connections are being made.

But my brain is not growing. My activities serve to maintain neuron connections, but I'm not really developing a whole lot of new ones at this point. Not the way a child does.

Still, it makes me wonder... because if there is any way to transfer what goes on when I'm in the block corner to what goes on when I'm in a meeting, or out with my friends...




* Within reason, of course. Child safety trumps uninterrupted play experience.

Left and Right OR 202/365

I am left-brained. And not just left brained, but SO left-brained. I like planning and structure. I'm not a heart-on-the-sleeve kind of girl. I did well in math, and love numbers. I enjoy writing. My way of thinking is sometimes so linear that rulers get jealous.

This is not to say that my right brain never speaks its voice. I have a good sense of colour. I am a visual learner. I love music. Still, right-brained thinking is certainly not my default at any given moment. That being said, I value things that are associated with the right side of the brain: creativity, art, colour, feelings. I have been trying to exercise my right brain more recently, encouraging it to take over sometimes:

• At work, we continue to infuse more concepts from the Reggio Emilia philosophy into our playroom. The decor is coming along nicely; currently, my partner and I are trying to decide if we need to rearrange furniture to better utilize the space (feng shui, anyone?); I'm trying not to let my left brain get stuck in the functionality of the room as it currently is. We are also setting out a variety of craft materials for the children to create art with--and not just the typical crayons, pom-poms and glue. Some of our recent craft materials have included fish tank gravel, marshmallows, twigs. I have spent some time this weekend cutting shapes out of used gift cards--recycling at its most interesting. I have also decided to start scanning some of the kids' art so that our Office Manager can start embedding it into the newsletter instead of Microsoft's clip-art (no offense, Bill).

• My photography is sometimes a paradox. The visual 'eye' needed for photography definitely comes from the right brain (I have even noticed that when I put the viewfinder up to my eye, I naturally go to my left eye, which is controlled by the right side of the brain. Interesting). That being said, I think I'm a left-brained photographer...if such a thing exists! It's taken quite a bit of training and conscious effort to remember to shoot a subject from a myriad of unique and different perspectives, let alone get crazy artistically abstract with my photos. My default is definitely to capture things as they really are, and in the moment; I'm pretty sure I don't even use a tenth of the potential that Photoshop holds for photography. And really, I'm okay with that. It's creative enough just to grab those unique perspectives of the world around me, and I've been working on doing that more often.

It is a long weekend here in Alberta, and I have been using my time today on a couple different photography projects. Letting my right brain influence my cropping, colour-matching, and organizing. I would love to see what it all looks like on an MRI...