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

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.

View this post on Instagram

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!

Plan, Prep, Pace

I hiked among the larch trees last fall. According to the reviews on AllTrails.com, it was considered moderate, yet kid-friendly. "If a six-year-old can do it, surely I can do it," I thought.

At that point in my health journey, I knew that physical activity exhausted me, though I didn't know why. It was a hike that I tried to take slowly and gently; yet, it still left me exhausted for a full week afterwards.

One year later, with a diagnosis in hand, I hold the gift of hindsight.

For those with ME/CFS, it's not only physical exertion that sucks mitochondria dry and frazzles the nervous system. Turns out that cognitive, social, and emotional exertion add to the load as well. When I thought of all the activities surrounding the actual hike, it's no wonder I crashed.*

With a strong disposition of persistence, I considered what would need to happen for a successful hike this year. Peyto Lake was a spot I had yet to see with my own three eyes (the two on my face, and the one on my camera), and I wanted the autumn colours against the aquamarine water.

And I did not want to crash.**

(c) Photos by Gina

• So, instead of a day-trip, it became an overnight trip.

• I worked from home the day before.

• I did not take any Airbnb bookings upstairs in the days leading up to my trip, so that I could be more blasé about cleaning and tidying.

• I did only necessary chores.

• My friend and I agreed I would not do any of the driving.

• And, though I didn't ask, she carried my backpack of snacks, water, and camera gear the whole way.

• We took a slow pace with lots of breaks.

• I monitored my heart rate the whole way; I kept my breathing measured and steady.

• And upon returning home, I didn't rush to put everything away. (My car is still half full of gear.)

All this, on top of the regular, daily things I do to keep my system stable.

...Now, the deceptive part about crashes is that they can be delayed by 12-72 hours after the activity or event. I had 3 crashes during the summer, and two of them I wasn't expecting. It's delightful. (#sarcasm). And so, as I went to bed on Sunday night, I wondered, "did it work?" 

...It worked.

As I type this at the 72-hour mark, a smile creeps up my face. My first pacing success.

Next to actually getting my diagnosis earlier this spring, this feels like the biggest of wins. 

* A "crash" is the term in the ME/CFS community to describe overdoing it. The clinical term is post-exertional-malaise (PEM), which means a worsening of ME/CFS symptoms after any sort of exertion. For me, a crash looks like a dysfunctional 24-48 hours on the couch, with brain fog that would make London jealous.

** Not just because a crash feels extra awful, but also because crashes can contribute to overall decline in the long run. 

The Outcome of Persisting Exhaustion and Exhaustive Persistence

I was in a discussion once on social media about navigating the medical system. Someone commented, "It's a full-time extra job being undiagnosed." Tell me about it; I just got out of that maze.

It started with food intolerances; as I'd had a "sensitive" gut since childhood, everything seemed to point to a gut issue... until about two years in, when I started to connect feelings of extreme lethargy and brain fog to physical activity and/or stress (both positive and negative).

Maybe it's not just a gut issue...

I had already started poking at the medical system because of the newly-developed food intolerances, and so I continued to hop around from specialist to specialist--while also regularly visiting a variety of medical professionals to help manage the symptoms-of-unknown-origin. Somewhere along the way, I realized I didn't even care about getting better--I just wanted to know what was wrong.

The anxiety is high when every bite of food feels risky.

The apathy weighs heavy while you wait for the brain fog to clear.

You can start to feel crazy making so many lifestyle changes without a clear idea as to why.

(Thank God for my therapist.)

I was given a diagnosis of IBS in 2020; by then I already knew that it wasn't the only thing going on. In one of my down-the-rabbit-hole, anything-new-I-can-learn-today searches, I came across a list of symptoms on the CDC website that I hadn't seen before. My eyes grew large as I read a list of criteria for which I checked nearly every box. I asked my GP if it was worth looking into, and she referred me on to someone who might be able to answer that question.

Four years, and six specialists later, I have a diagnosis. An internal specialist confirmed that my symptoms and experience tell the story of Myalgic Encephalomyelitis--or, as it's more commonly known, Chronic Fatigue Syndrome. (I will refer to it by its abbreviation, ME/CFS.)

A surprisingly common, yet poorly diagnosed disorder.

They tell you not to Google your own diagnoses, but at this point in my journey--two gastroenterologists, an internal specialist, rheumatologist, allergist, general surgeon, two dieticians, two naturopathic doctors, my GP, a chiropractor, two acupuncturists, and a massage therapist--we had eliminated and screened for a lot of different things; and, not a single medical professional had even whispered ME/CFS as a possibility. I honestly think it wasn't even in their mental catalogue of options. How long would it have taken to get this diagnosis if I hadn't regularly been checking for new information online?!

Diagnosis day was a good day.

ME/CFS is categorized by the World Health Organization as a neurological disorder. When my food intolerances first came about, I felt as if something in my body had short-circuited. Then, with the IBS diagnosis, I learned that part of the issue is mixed signals between the brain and the gut. Now, seeing ME/CFS as a neurological disorder, it really does seem that my circuits are a bit scrambled!

Will the circuits ever get fixed? Hard to tell. Like the wiring in an old house, there may be only so much that can be done. Some people get worse. Some get better. Most plateau at something less than 100% of their original health. There's no real prognosis. Right now, I just know that I'm prone to flip my breakers more often than others.

It's not life-threatening.

The internal specialist who diagnosed me said I've been doing everything right so far to manage my symptoms and take care of myself. After my appointment, I promptly joined a couple support groups (one local, one online), and I'm hoping to add more tools to my toolkit as time goes on.

I will keep poking the medical system as needed.

I don't know how much I'll share online--with some exceptions, I tend to keep most of the details of my health experiences to myself and those closest to me. However, I know that there is power in community. I know that advocating for myself is important, and sharing parts of my story may help you advocate for and empathize with others. In essence, I now live with a disability--it's a new perspective on something that's been important to me for many, many years. And, as stated before, this is a poorly diagnosed condition--because (as I'm learning) it is poorly understood and poorly researched. If I can help increase understanding, then perhaps someone in the future will not have to go through four years of emotional and physical turmoil before getting a diagnosis.

They're likely tired enough already.

* Image source: https://steller.co/s/there-are-4dxR2bfkaYN/p/1

Bad Days

I've had all the tests.
They say I'm fine.

I am not fine.

My gut had holes
--has holes?

Food once familiar, now foreign
My body attacks
any traces that enter it.

A list of enemies
The full extent of which I am still learning
The list seems to keep growing

Please stop growing

Misread labels,
risky restaurants,
unknown triggers

Sometimes "may contain" is safe
Sometimes it's not

It wraps me up in ache
screws with my body
and messes with my mind

Coming to terms with something
that is chronic--
even if not permanent

(Dear God, please not permanent.)

I'm trying to repair the damage
Trying to convince my body
and mind
that food is not the enemy.

And so, in all this, I
sometimes
have bad days.

A coil of pain wraps itself around my chest
Slowly, repeatedly,
Until everything hurts, and it's hard to breath

And as long as I don't move--

A smoothie for supper.
Ginger for the nausea.
Hot water bottle,
comfy PJs.

I crawl into bed,
wait for it all to pass

wait for sleep.

Aware

I caught in my Twitter feed the other day that the High Level Bridge was being lit up for Food Allergy Awareness Week. My eyebrows furrowed; there's a Food Allergy Awareness week? (Of course there is.)

The High Level Bridge will be teal tonight for @FoodAllergyCAN's Food Allergy Awareness Week. #yeg #foodallergies https://t.co/3zEWsYStpo

— High Level Bridge (@YEG_HighLevel) May 17, 2019

I've become more aware of food allergies and sensitivities recently than I ever wanted to become. Something in my system short-circuited last year, and I now find myself allergic to gluten, dairy, egg, and soy. ...Plus a handful of intolerances on top of that.*

So when it comes to food these days, I'm aware of everything.

I'm not quite out of the woods yet in this journey, but I'd like to share a little bit of what I've learned with you. Let you into a bit of my reality. Because increased awareness of any cause or condition doesn't just come from lighting a bridge in pretty colours. It comes from the shared stories of the people who live the experience.

I am fortunate that my new "health condition" isn't debilitating or life-threatening. But it is chronic. And nevertheless life changing. My heart breathes a sigh of relief when I hold out my laundry list of allergies and am met with empathy.

May this shed light on how you might be that person to others as well.

So. Some thoughts on [my] food allergies in no particular order:


No, I can't cheat.

Allergies are an immune response. Every time I consume an allergen, it stresses out my immune system, thus putting my health at risk. Also, just because my allergies aren't life-threatening doesn't mean they don't make me uncomfortable. Stinging and watery eyes, congestion, heartburn, headaches, shortness of breath, lethargy... sure, that sounds like tons of fun; said no one, ever.

The intolerances are, in their own way, worse. With those, some foods don't get broken down like they should. Worst case scenario, molecules run the risk of passing through my intestines into my body and blood stream not fully metabolized--which could seriously damage my gut over time. Best case scenario is the molecules bypasses digestion and land in my colon, where they are glutted upon by my gut flora, causing uncomfortable bloating and/or socially embarrassing flatulence** for up to twelve hours.

So no, I'm not going to cheat.


No, there's no going back.

I've had people ask if I'm back to eating regular food yet. Here's the thing: I likely won't ever be going back to "regular" food. With the support of a registered dietician, I went through a rigorous elimination and reintroduction process.

But unlike so many eliminations these days, mine was not a fad cleanse.

It was a test.

Most foods passed the test. Several did not. And while allergies can disappear, my understanding is that it's more often the case with childhood allergies that people outgrow. Not sure how long it would take to "outgrow" allergies that start in one's late 30's, but I'm betting it's not anytime soon.


You're right, it is expensive.

I have heard the lament of those who are required to occasionally purchase allergen-free food for someone they know (I used to be one of those people). "Do you know how much it costs to buy the gluten-free kind?" Yes, yes I do. I pay nearly twice as much for 3/4 the amount of food than I did in my pre-allergy life. I also now shop at three different grocery stores, just to have the same variety in my food choices as those without allergies (no store seems to want to carry the same allergen-friendly brands as others; what is up with that?).

It takes extra money, time and energy, just do to the groceries. Consequently, if you are one of the people who have gone out of their way to buy or make me a Gina-friendly snack or meal, know that I absolutely love you.


Eating out sucks.

There is no clearer way to put it than that. For one, I now run the risk of coming across as "that person" with my litany of questions for the server, and the double-triple-checking I make them do. Turns out self-advocacy takes effort and courage--every single time.

In terms of actual eating, the only restaurants I have found--yet--where I can eat with 100% confidence is Freshii and Chopped Leaf, because I can make a custom salad.

But, you guys.

I am so. tired. of salad.

It seems to be all I can order in any mainstream restaurant. And even then, I generally need 2-3 ingredients removed or substituted. I am a salad connoisseur these days; not a title I ever anticipated having.


Travel is stressful.

Because of that eating out thing.

I am so grateful to live in a large urban area where I have at least half a chance at restaurants, as limited as my options may be. Cities also afford access to alternative-style restaurants that cater to diverse dietary requirements (I still have to modify whatever I order, but I feel less judged there. As well, staff at alternative restaurants seem to thrive on the challenge to make me a safe meal, rather than see it as a burden to have to modify the dish). However, when I travel, it generally involves passing through small towns where the definition of salad is iceberg lettuce with tomato and cucumber. That's not going to sustain me.

And even when I find a restaurant that is willing to accommodate, there is always just a hint of worry--what if they miss something? What if my symptoms are worse than before? It's one thing to experience symptoms and just go home; it's another to be out of province and feel crummy.

I'm a bit of a snack-hoarder these days when I travel; and yes, I do pack breakfast in my suitcase--one less meal to purchase is one less meal to stress about.


There was a grieving process.

It took me about four months to realize what I was feeling, but I've experienced legitimate grief in this whole process. I don't like cooking. While I would sometimes try making new dishes, I relied on a collection of easy go-to recipes, mixed in with the occasional convenience meal (e.g. frozen pizza). In addition to now having to make ev-er-y-thing from scratch, suddenly most of the recipes I'd curated over the last 15-20 years were not even an option.

I grieved the loss of this way of being; this routine; this familiarity.

Even more so, I grieved the loss of recipes that I not only enjoyed, but were associated with memories of being shared with others. I can't share those recipes again.

Unlike cooking, I quite enjoy baking. But still, I had to grieve the loss of recipes made for myself and others that could not be adapted, or did not adapt well when I tried (and oh, I tried). While I have started to find new and successful recipes for baked goods, my baking game is still not quite where it used to be. For many reasons, I am still searching for lost joy in this activity.

That being said...


You don't need to feel guilty about eating different food than me.

Okay, I can't actually tell you how to feel. But please know, I don't feel tempted or jealous, nor do I grieve, as you all eat your Hawaiian pizza with double cheese, and I enjoy herb chicken over rice. It's true, I know what I'm missing food-wise. But I also know what I'm missing symptom-wise. And while I'm still on the hunt for a few good alternatives to favourite dishes (like pizza), I am not lacking for good-tasting food overall. Especially as I can still have wine, and dark chocolate, and bacon...


I'm trying not to talk about it all the time.

Really.

I know it worms its way into the conversation every time food makes an appearance. I know it seemed like it was all that was on my mind at first. It was all that was on my mind at first.

It means a lot that you ask how I'm doing. I'm trying to get better at giving a meaningful but concise update; I'd like to get back to regular conversation around the table too. But for all the gains I've made in a year of trial, error, testing, adapting, changing, it still consumes a large portion of my thoughts and routines.

I don't need a bridge to remind me to be aware of food allergies; I'm never not aware.

I see others who've had adult-onset dietary conditions for much longer than myself, and they seem to engage relatively confidently with food. I know I'll get there. I so appreciate the patience and grace that is continually extended.

There is light at the end of this teal tunnel.

Maybe it's that pizza.

*The intolerances have been simmering for years; they just finally seem to have reached the tipping point.
**Like, I don't even want to be in the same room as me.

#IAmGrateful 17

Health

For a strong, healthy body,
a resilient, healthy mind,
and a fierce, healthy heart.