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.