Tuesday, February 20, 2024

Pura Vida

"Pura Vida...it's Costa Rica's slogan, as well as being a way of life. The direct translation is "pure life" but it's so much more than that. It's living the good life...cherishing simple pleasures...spending time with loved ones...and enjoying a slow, relaxed pace of life." 
- John Michael Arthur

Pura Vida is a phrase I heard or said myself several times daily in the beautiful country of Costa Rica, where I just recently returned from after two weeks' vacation. Costa Rica has been on my “must see” list of places to go for several years. Warm, tropical, known for being eco-conscious, lots of flora and fauna to photograph… It had been over 10 years since my last tropical vacation, and it felt very overdue!

One highlight of this particular holiday was how thoroughly I was able to enjoy it, physically as well as emotionally. I enjoyed the company of good friends, watched the sunset on the beach every evening, ate nearly every meal outside, floated in the pool with a good book, won a card game or two...

Balancing out the gentle, unhurried pace, were also a variety of activities for the senses, including:
As well as the sights, sounds, and smells of a foreign country; all in 30°C+ temperatures; none of which required so much as a nap afterwards.

This would have been a very different trip even a year ago. There would have been resting the full day before and after any activity, and lots of negotiating with myself about which activities might be ‘worth’ that.* I would not have done nearly as much sight-seeing. Just the daily trekking around in the golf cart (our rented mode of transportation) would have been enough of a sensory experience to tire my brain and body for the remainder of the day.

Instead, I was able to enjoy every aspect of my holiday, fully present through it all.

I am SO proud of my nervous system, and I’m proud of myself as well. I’ve done a lot of work to get to this point.

The view from my bedroom balcony
where I did my brain retraining
each day
I continued my brain retraining practices each day in Costa Rica—delighting in the ability to do my 'rounds' entirely outdoors! After 8 months, my rounds have become as routine as many people find the gym.

Now that I’m past the 6-month mark, I’ve been playing with the frequency of my rounds, weaving back in more of the other practices I’m familiar with and have come to enjoy (e.g. yoga, breathing exercises, meditation). At the very least, however, I’m finding my rounds are a nice way to start and end my day.

Especially with palm trees as my backdrop and tropical birds as my soundtrack.

My first spark of hope with my recovery came last summer when, just two weeks into my brain retraining, I realized I hadn’t needed a nap in several days. As I regain the ability to do more and more of the things I love well--like travel--my hope grows. When I have hiccups, I know they’ll pass; and, they are fewer and farther in between.

I was fortunate enough to vacation in the Nosara area, which is on the west coast of the Nicoya Peninsula, one of the world's Blue Zones. Immersed in sunshine, ocean waves, and tropical jungle, it's not hard to see why it's a Blue Zone. This vacation was not just a boost to my nervous system, but a boost to my spirit as well.

Pura vida.

*There is a huge difference between resting because I want to, and resting because I have to.

Saturday, December 16, 2023

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. 

Like a Bird

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

Monday, October 30, 2023

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 πŸ™‚"

Saturday, September 30, 2023

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 (πŸ™‹πŸ»‍♀️), 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.

*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.

Thursday, August 31, 2023

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.

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.

Sunday, July 23, 2023

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 MatΓ©, 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!

Friday, May 12, 2023

Mystery Unfolding

It's interesting to consider that today is ME/CFS Awareness today, as it was a year ago--almost to the day--that I reached my breaking point in this health journey. 

After four years of increasing symptoms, I had not yet been diagnosed. I was recovering from a 3-month-long GI flare that had caused a lot of pain, fatigue, and left me intolerant to even more foods than I had been previously. More often than not, I was headache-y; brain-foggy; nauseated, bloated, and crampy; I was itchy; I was in pain; and I was oh, so tired.

My mental health was not faring much better at that point. I'd been screened and tested for all the things. But having a bunch of tests come back "normal" didn't fill me with relief--I felt anything but 'normal'. Various professionals tried to chalk up some of my symptoms to stress. Of course I was stressed! I was trying to live a life that felt very uncertain, in a body that felt like it was retaliating against me. Sometimes I just wanted to scream, NO! Pay attention! Something is wrong inside me!

But if doctors didn't know what it was, how could they take care of me? How could I fully take care of myself? Was I doing things to make my health worse without knowing it? Was this something life-long, or temporary? Would the day's symptoms interfere with my activities or just simmer in the background? Should I be taking time off work? How would I even advocate for that with a mystery diagnosis? What if it really is all in my head? What if I can't afford this health issue?

I felt like I was being consumed by this thing I didn't even have a name for. 

I had attended a webinar for work a few weeks prior, which included some discussion around mental health. They shared something called the Stress Continuum, shown below.

I was already familiar with the "surviving and thriving" dichotomy. I knew I'd spent much of the last several years 'surviving' (pandemic notwithstanding). And I knew I was feeling particularly rough at that point in time. But this was the first I'd seen that what I was experiencing was not just 'rough' surviving, but that I was camped out in Struggle.

Something hit different seeing everything I'd been experiencing for several months listed so straightforward in the yellow column. "I really can't keep this up" I whispered to myself.

I had a friend offer some wisdom and empathy, and when I limped into my scheduled therapy appointment two days later, it didn't take much of her own wisdom and empathy for me to unravel.

This was rock bottom.

Now; you know how some of the story has progressed. It's amazing the relief and insight a diagnosis can bring. It provides the ability to access and implement relevant treatment strategies; find a community of people with shared experiences to learn and grow with; and interestingly, I've received less of the well-meaning, but often useless, "have you tried...?" comments.

I'm focusing on this aspect of my health journey today, because I think as much as we need to be aware of the disorder itself--to find better prevention, treatment, and recovery strategies--it's important to be aware of the individual's struggle leading up to this particular diagnosis. 

ME/CFS is not the only medical condition out there that is tricky to diagnose. But I would argue it's one of the more maleficent conditions, in that there are no clear tests for it (i.e. you won't find lesions or antibodies), and doctors receive very little training on the condition. Indeed, it never crossed the minds of my GP or the 6 specialists I'd bounced around to (or the myriad of integrative health professionals I work with on a regular basis). There are some who still hold onto the stigma from the 80's that it's not a "real" condition, or that it's psychosomatic at best. However, the CDC recognizes it as a neurological disorder, and while there are no specific tests to diagnose ME/CFS, there are patterns and indicators that show up in those with that diagnosis significantly more than other conditions or the general public (the PEM and the mitochondrial dysfunction, for starters).

In many ways, I am fortunate. My condition was 'caught' early. My protective factors, self-advocacy, and various forms of privilege are likely what kept me from moving into Crisis on the continuum.*

Others are not so fortunate.
  • There are some who go much longer without a diagnosis than my four years.
  • There are those with much more severe degrees of ME/CFS who are consumed by depression or anxiety (or both).
  • There are many for whom it's not safe, affordable, or otherwise possible to keep coming back to their doctor and demanding the next option for answers.
  • There are some who are never taken seriously by any doctor.

My understanding is that the tides may slowly be turning, thanks to Long Covid. There is increasing evidence that Long Covid is ME/CFS. Approximately 80% of people with ME/CFS develop the condition after a viral infection. Many with Long Covid meet the criteria for an ME/CFS diagnosis; it's likely that Long Covid just happens to be ME/CFS where the specific virus is known. And because of the nature of Covid, the medical field is taking Long Covid seriously,** which means hopefully those with non-Covid-related ME/CFS will start to be taken more seriously too.

Until then, I guess we continue our efforts to make the invisible visible, to get the medical attention we deserve, and in a timely fashion, and to advocate for better.

I do hope that you who are reading these posts are internalizing the knowledge and stories I am sharing. And I hope you will be an ally to those with chronic conditions--particularly the nebulous ones like ME/CFS, fibromyalgia, Long Covid, MCAS, etc. In the same way that marginalized groups of people find themselves having to do the work of educating the privileged when they shouldn't have to, the same often holds true for those with chronic illness. Certainly because of my value of learning, I choose to do this to a certain extent. However, I get tired easily, and there is strength in numbers.

How could you help someone around you who might be Struggling today?

*Thought I dipped my toe into crisis when I contracted Covid. Covid made my ME/CFS symptoms ten times worse, and hit when I was still trying to climb out of that rock bottom place. While I did not consider hurting myself, I could start to understand why those who live with more severe ME/CFS sink into deep depression, or consider ending their life.

**Though, given how blasΓ© the world has become about the short and long-term effects of Covid, I still sometimes wonder if they're taking it seriously enough. 

Monday, May 8, 2023

Becoming Aware of... PEM & Pacing

I'm sharing a few educational posts on ME/CFS this month, as it's the awareness month for the disorder.

Last week, I introduced you to Spoon Theory. Today, I want to expand more on what that looks like in real life, and why it can be extra tricky for someone with an ME/CFS diagnosis.

The two main points from my last post were:
  • ME/CFS involves mitochondrial dysfunction
  • Those with chronic illness have limited "spoons" relative to healthy people.
Everyone manages their spoons--their energy--differently. I can only speak to the details of my own experience, but others with chronic conditions are negotiating their spoons on a regular basis too.

Fatigue is a symptom of many disorders and diseases. However, I can't think of other conditions that have the word "fatigue" right in the very name. Those with ME/CFS are required to have a number of certain symptoms to meet the criteria for diagnosis. While the constellation of those symptoms looks different in each person with ME/CFS, the hallmark symptom--which all those diagnosed with ME/CFS must exhibit--is something called Post-Exertional Malaise (PEM). Colloquially, it's known as a 'crash.'

This means that when individuals engage in too much* physical, cognitive, social, or emotional exertion, it exceeds mitochondrial capacity, and the body taps out. During a crash, everyday ME/CFS symptoms get worse, and the level of the fatigue can become completely disabling.

It's our body saying "YOU. ARE. OUT. OF. SPOONS."

Crashing is bad. Not just because it renders the person dysfunctional for time (days or weeks, depending on the severity of the person's ME/CFS), but because--as I understand it--the more often one crashes, the less likely they will be able to recover. (Discussion of recovery/remission is beyond the scope of this post, but suffice it to say, there are a significant number of people whose MECFS improves--sometimes significantly--and PEM/crashing seems to reduce the potential for improvement).

To avoid crashing, those with ME/CFS must pace. We are responsible for figuring out our energy envelope, and pacing activities within that limit. This means we are regularly reflecting on our daily and life choices. Can we go to the grocery store without feeling light-headed? Can we socialize with friends and still drive ourselves home safely? Can we maintain a daytime job without crashing every evening? ...These are the kinds of questions we learn to answer to know how to best count our spoons.

My understanding is that asking the question, "what do I have the spoons for today?" is common for those with chronic illnesses. 

Here's the thing about PEM, though--and why it distinguishes ME/CFS from other chronic conditions that involve fatigue: the impact of over-exertion is delayed. If we've overdone it, we likely won't crash for 12-72 hours (my personal delay seems to be about 36-48 hours). Which means I can feel like I'm pacing my activities fairly well, only to collapse two days later. So, not only do I mentally consider things like whether I should do laundry in the afternoon if I did gardening in the morning; but, I also have to consider things like how the errands I do on Tuesday, and the walk I take with a friend on Wednesday, might impact my work meeting on Thursday.


That's the mitochondrial dysfunction. The body just can't make enough energy with enough efficiency.

I first clued in to the link between activity and PEM in my own body (though I didn't know the term) in 2020. I was training for a long-distance bike ride, and found myself exhausted for several days after just 5-10km stints. Surely, I'm not this out of shape?

I had the wherewithal at the time to scale back my physical activity, though it would be another two years until, with a proper diagnosis, I understood what was happening, and started to understand the impact of other types of exertion as well.

A Spot of Sun (SOTC 210/365)
(c) Photos by Gina
Since then, I've spent the last year in my own personal pacing experiment, trying to determine the limits of my energy envelope; how to enjoy life more while crashing less.

For example...**

I was advised early on that if a standing task can be done sitting, sit; if a sitting task can be done laying down, lay down. So I sit to load the dishwasher; I sit to get dressed; I sit to brush my teeth; I sit to shower (and mostly I bathe instead). When I work from home, I'm more often reclined on the couch than at my desk.

I've learned to re-negotiate the way I engage in my favourite hobbies, as many of them are 'spoon-heavy.'

My kitchen is a perpetual disaster, and I've learned I'm learning to be okay with that.

I've learned that strong emotions drain me faster than pretty much any physical activity.

I've learned that naps after choir are non-negotiable.

I bought robot vacuums.

And I've never gone back to in-person grocery shopping since pandemic shutdowns were no longer a thing.

I'm getting pretty good at noticing when I'm pushing myself a bit too much within an activity. I might feel a bit light-headed, and need to sit down (even though all I did was dare to bake some muffins and cook a meal standing the whole time). My brain might start to get foggy. My heart rate might jump too high. So, I will sit, rest; check in with my body, and adjust accordingly. 

And, I am fortunate to have people in my life, and systems in place, that accommodate to this new pace I'm living, and who offer a helping hand where maybe it wasn't needed before.

To be honest, this time of year is the hardest to not overdo it. It's spring! There is gardening to be had! Photos to be taken! Travel! Fresh walks in the River Valley! Longer daylight hours do all the things!

It's hard to balance it all when it's all so good. 

But I'm learning.

*What constitutes 'too much' varies from person to person with ME/CFS. And in the same person, 'too much' can vary based on other factors. The same physical task that was doable last week may send a person into a crash if their nervous system, endocrine system, or immune system are currently taxed due to external factors.

**It should be noted that clinically, my ME/CFS is considered 'mild' (because I can still work and take care of myself); the changes I've made to my own life would not be sufficient for someone with more moderate or severe ME/CFS.

Monday, May 1, 2023

Becoming Aware... of Spoons

May is ME/CFS Awareness Month. I'm sure it's an awareness month for a bunch of other conditions and causes, but this one is extremely personal, so I'm gonna take it and run with it. It seems so strange to talk about awareness for something I’m aware of every waking moment (and sometimes even in sleeping moments; this damn disorder has infiltrated my dreams on more than one occasion). 

But I would guess that is always the way for the person living with the thing for which they are trying to make others aware.

"Aware is half way there," it has been said; yet, I also feel there needs to be so much more than just awareness of any given cause, disorder, disease, injustice, etc., to move the needle on change or to make amends for damage done. (Hold that thought; I'll come back to it in time.)

May 12 in particular is International ME/CFS Awareness Day. Actually, that day isn’t solely about ME/CFS. It’s the International Awareness Day for several disorders that fall under the umbrella of nebulous multi-systemic neurological or immunological conditions—ME and its cousins, like fibromyalgia, multiple chemical sensitivity... These disorders are common, yet so poorly understood, that they get lumped together.

I guess we really do need to focus on awareness.

I wrote a post last year explaining a little bit about what ME/CFS is, so if you're entirely new around here, or want a refresher, pause for a moment and check that out, or check out the CDC's definition.

There are many facets to ME/CFS, too much to focus on in one post. Today, I want to shed some light on the 'fatigue' part. ME/CFS is one of many chronic illnesses that are considered "energy-limiting." Yet, the 'fatigue' part of "Chronic Fatigue Syndrome" has been so misunderstood and misinterpreted. It's not just just that we need a nap, or a couple good nights' sleep. ME/CFS involves mitochondrial dysfunction. You may recall from high school that mitochondria are responsible for making all the energy your body needs and uses. Well, my mitochondria no longer make energy efficiently. So that means it's hard to have the energy I need to do the daily tasks of living, working, and socializing; and, it's hard for my body's internal processes (digestion, cognition, circulation, etc.) to function at full capacity.

Sometimes I've compared my daily experience to that of being an old cell phone with a battery that drains too quickly, and doesn’t seem to charge properly. It’s as if I’m forever closing power-heavy apps, dimming the screen, and enabling low-power mode, just so I can text my friends.

I just finished a book that uses currency to describe the energy you have to "spend" each day (no overdraft or loan or credit card options, by the way).

Others have described it like a vehicle--there is only so much fuel (and there seems to be a leak somewhere).

However, one analogy that seems to have struck a chord in the chronic illness community is “Spoon Theory.” It’s not actually a theory, it’s an analogy, but stick with me. The creator of this analogy uses spoons to represent energy. Essentially:
  • Everyone wakes up with a quantity of spoons; healthy people wake up with [a lot] more.
  • Every task you do, and every experience you engage in, requires a certain number of spoons (FYI, healthy people use less spoons for the same task as someone with a chronic illness).
  • If you run out of spoons before the end of your day, you’re in trouble.
  • While most people’s spoons magically replenish in full during sleep, that’s not a guarantee for those with ME/CFS (or other energy-limiting chronic illnesses). It’s more than likely we will replenish some spoons, but the number varies from day to day. Yesterday I woke up with 10; today maybe only 6.
Turns out, this analogy resonated in the chronic illness world, and begat a term for people who have to count their spoons carefully--Spoonies. (I'd seen the term Spoonie used on disability-related social media posts, but never really understood what it meant. And then suddenly I was one.)

As you start—or continue—on your awareness journey with me this month, I invite you to take 5-10 minutes to read more about Spoon Theory by clicking the meme below.*

Sunday, December 18, 2022


It was as I sat watching the first Advent candle being lit in church, that I decided I wanted my own advent wreath. It’s not something I’ve ever really been into, and it’s not something we had in our family growing up. But suddenly, I wanted one.

Here’s the thing, though. With my ME/CFS diagnosis, my nervous system is hyper-sensitive, and prone to inflammation from things that other people’s bodies don’t even pay attention to.

Chemical sensitivities are almost always an issue for people with ME/CFS, and I noticed this in myself over the last few years. I am keenly aware of odours, and I can get overwhelmed by fragrances quickly, even if they’re natural, like essential oils.

Suffice it to say, my home has become a scent-free and paraffin-free household. I always purchase a couple beeswax candles wherever I find them, but it turns out the purple and pink of Advent are hard to come by—well, after Advent has already started, anyway.

So, while I knew I wanted an advent wreath with candles, I also knew that, like everything else, I was going to have to improvise and make my own.

The wreath was the easiest part. Then, I managed to find some plain votive holders at Michael’s — you’d think these would be ubiquitous this time of year, but no. And lastly, the candles. The DIY kit arrived from Amazon just a few days ago.

We are on the fourth Sunday of advent, and here I am, lighting my wreath for the first time.

But for now: hope, love, joy, and peace—I will take them all. And because it is also the first night of Chanukah, I used the shamesh to light the advent candles—because Chanukah reminds us of miracles, and I’ll take a few of those too πŸ˜‰