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. 

@trishagreenhalgh

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 blasé the world has become about the short and long-term effects of Covid, I still sometimes wonder if they're taking it seriously enough. 

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.

...Right?!

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.

(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.

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.*

* This guy on TikTok took the analogy even further. (language warning)