Living Below the Threshold: Pacing

How to close apps to conserve energy

I hate pacing.

I hate everything about pacing.

Part of me feels like a big fraud for attempting to write this post because I’m FAR from having it mastered. But, I think, that’s part of it—accepting that this isn’t something you necessarily master. It’s an entirely new way of living. It’s not a part of the day, it’s the whole day. And everything about it feels incredibly unnatural. I have found it to be the least intuitive thing I’ve ever done, so I needed really practical implementation strategies.

Simply being told, “you need to pace,” was meaningless to me. I needed a framework that clicked for me, and with a little help, I found one. I hope this post helps others in the way I needed help—how to actually implement pacing.

Pacing seems simple but it’s actually pretty complicated, so this post is a bit longer. Pace yourself…sorry, I couldn’t resist.

MEpedia

Disclaimer! I’m not a medical professional and this isn’t medical advice. ME is highly unique to each individual. What works or is even do-able for some, won’t for others. Nothing I say here is intended to be universal. Also, pacing must match lifestyle circumstances and, therefore, has to be scaled to your best fit. Honestly, it takes privilege to pace. Last, pacing is not going to cure me (and likely not you, I’m afraid). It has, however, made my disease experience and PEM feel a little less out of control.

Batteries & Apps

“You’re an iPhone 2 in a world of iPhone 14’s and you’re running too many apps.” When Amy Mooney, MS OTR/L first said this to me, it was like a lightbulb going off. We’ve all heard the analogy of ME to a phone battery, but, honestly, I never found it terribly helpful from a practical standpoint. I would hear, “use 30% less battery.” What’s that even mean?

Amy told me I could think about each discreet “app” as including the following: exertion, time, socializing, cognitive tasks, and each of our senses (hearing, sight, smell, touch). All of these apps use battery life, or metabolic energy. This simple framework has changed the way I pace by creating more specific, tangible things I can do to close some apps. This was a mindset shift that reframed pacing as something I’m doing every moment of every day. By knowing what my apps are, and pairing them to specific tools, it’s a fairly easy and seamless way to make constant adjustments without a lot of thought.

Level of Exertion

In the Bateman Horne Center video below, Amy discusses what pacing for PEM can look like. One of the foundational resources they mention is the Workwell Foundation Pacing through Heart Rate Monitoring guide. Using a heart rate monitor to stay below your anaerobic threshold (AT) is a method of monitoring your “exertion app.” Workwell’s guide has a base recommendation of setting your AT at 15 beats per minute above your resting heart rate. This can be a great place to start, particularly if you’re in a “push/crash” cycle because it’s a very conservative starting point. Staying below this heart rate for a period of time could help get you out of that cycle, but it will generally require extreme, sedentary rest.

15 bpm above resting, however, may be unrealistic to maintain, plus it might be unnecessarily low—much lower than your actual AT. For example, my resting heart rate (HR) is 60 bpm. Staying below 75 bpm is neither feasible nor necessary for me to avoid PEM (at my current baseline). So, there’s also a few rough estimates one can use instead of 15 bpm above resting and in the absence of a CPET (measured AT). They’re explained well on Solve ME’s guide on how to use a heart rate monitor to avoid PEM. As detailed there, you can try this equation:

(220 – age) * 0.6 = estimated AT
(If you are more severely ill, use 50% or 0.5 instead of 0.6)

A big caveat with HR monitoring is orthostatic intolerance, especially POTS, which presents unique challenges to this form of pacing. All pacing is easier, and probably more successful once comorbidities are managed.

Heart rate monitoring and staying below my AT with a watch set to buzz at my estimated AT, has been hugely eye-opening and helpful. I use the 50% threshold for my watch as a good, conservative sentinel. I know if I’m going over that number, I have a little wriggle room and time to adjust. Our thresholds are so low with ME, it’s almost impossible to stay below it without seeing it in real time and making constant adjustments to control it. I can’t recommend HR monitoring enough. Having said that, as I learned the hard way, it’s far from the only pacing tool and technique some of us need. Remember all the apps we’re running. HR monitoring is only addressing one.

The Clock is Ticking

The MEAction Pacing and Management Guides provide a little more insight into the various causes and triggers of PEM. It mentions cutting activities in half or breaking them into manageable chunks. The time app. I have found that the length of time I spend doing a particular activity, regardless of my HR, can induce PEM. I’ve also found that repetitive muscle movements, even if I’m staying below my AT, can sneak up and bite me if I do them for too long (exertion/time).

This one is so stinking insidious and cruel. You might be doing something that feels like minimal exertion when all of a sudden, you’re smacked upside the head with terrible symptoms. Or vice versa, you try to exert more energy over a very small timeframe and get smacked. Energy use is both discreet and cumulative—with each of us having our own personal set of triggers and thresholds. I have found it helpful to set the timer on my phone when I’m trying to accomplish something. Limiting the amount of time spent on a given task before proactively resting, or task switching, can be the difference between the frustration of pacing versus three days in agony.

Closing Apps

Once I started thinking about pacing through the apps analogy, I saw all kinds of ways I could be conserving energy and avoiding/lessening PEM. The mindset shift helped me to start seeing things I used to do for symptom alleviation as things I could be doing as part of my daily pacing routine. Things beyond proactive rest. I’ve come to (begrudgingly) accept that pacing (for me) means measuring out absolutely every little use of energy, every minute of the day.

No matter what I’m doing, I think about which apps I’m running and whether or not I can close any. The examples below can be extended to any task or activity and modified to fit your threshold.

Trying to get a few dishes cleaned? If you don’t need to be standing, sit. Body position and holding are actually exertion, especially if you have orthostatic intolerance. Stools on wheels with backrests are great in the kitchen, like this one. I find the backrest really important because without it, it’s more difficult to keep my heart rate down. If you don’t need to be listening to anything and there’s background noise, that’s an app running—your brain is hearing and interpreting noise and that’s using energy. Pop in some ear plugs or use noise cancelling headphones. I use these Sony headphones and find them very effective. You might be surprised how much background noise there is even in a “quiet” house.

The dreaded shower. Adapting self-care routines seems to be one of the first things we face. A shower chair is an obvious way to reduce your exertion during a shower. A not so obvious trick is using silicone ear plugs in the shower to reduce the noise of the water hitting the floor, like these. Drying AND brushing your hair? Do both at once with a drying hairbrush—while sitting, of course. Don’t forget to use your earplugs while the hairdryer is on! Turn down your visual app by reducing the light in the room as much as possible.

Enjoying an audiobook? Resist the temptation to glance at your phone and shut down your visual app entirely with a mask. I like the Manta eye mask for comfort and complete darkness. Audiobooks are great because they automatically eliminate your visual burden, but they still require a fair amount of energy. Completely shutting down visual stimulation and positioning your body for rest is energy saving. Elevating our legs can be really helpful due to the blood flow issues documented in ME. If you don’t have an adjustable bed base, use a leg elevating pillow wedge. Our hearts struggle to pump blood and our brains struggle to receive adequate blood—adjusting body position can effectively reduce the exertion app that’s always running.

Similarly, conversations burn through massive amounts of energy. Position your body, eliminate background noise, use sunglasses—limit all the extras, even when they don’t feel like extras. A body is like an idling car, it’s always burning fuel.

You get the point. It has helped me to think about pacing in specific, discreet ways, like apps. My first approach was much more limited to levels of perceived effort, which didn’t work for me. It was too ambiguous and far too easy to talk myself out of properly pacing—because pacing through life is unnatural. If you’ve been frustrated, it’s not because you’re failing at pacing. It’s because pacing is foreign and strange and maybe you haven’t found the mindset that clicks for you yet.

Yes, You Need One

I see a lot of people with ME question the need for a mobility device. There’s a ton of discomfort and guilt for using one when you’re still able to walk. Guess what? Most mobility device users are ambulatory, here are some facts and stats. If you need a mobility device to prevent temporary or permanent disease progression, then you need a mobility device! I actually have a full range of devices depending on the situation. A cane, a seated cane, a rollator, and a lightweight, foldable power wheelchair. The cane is something I have with me almost all the time outside the house. Even if I’m out in my wheelchair, I have my cane for moments when I get up. It forcibly slows me down to pace when I’m having a “good” day. It also signals to people around me that they may need to pass on the left, I’m a slow-moving vehicle! The seated cane is perfect for walking around my yard. If I want to see the garden, I can use the seat to keep my heart rate down the moment it starts heading towards the danger zone.

I use a Polar watch, which allows you to set heart rate zones. You can then lock in a zone and your watch will buzz when you hit the upper number.

I use all these tools plus the Visible App to help me pace. Sometimes I get it right. A lot of times I don’t. But with all we know about PEM and disease progression (such a great video!), if pacing reduces my odds of becoming severe even by some small percentage, count me in.

Let’s Chat

I just love this video. An easy-to-follow 45-min conversation between some of the experts, with and without lived experience, tackling the issues of PEM and pacing. Gez Medinger is an investigative science journalist and patient advocate for Long Covid. He was a filmmaker and marathon runner when he became ill with Covid. He now makes fabulous YouTube videos, like this one. I love this because it feels like sitting around with a couple of friends who really get it and can offer insights, nuance, and gems of advice.

You can find other resources about pacing here:

Dialogues for ME/CFS Pacing Video

BHC ME/CFS Page, see video on pacing

Long Covid Physio Pacing Resource Guide

Yes, it Sucks

I get it. Pacing feels like prison—a life sentence. When living less is the only intervention, you know the medical system has failed you. We can hate it. We can resent it. But I don’t think we can avoid pacing. Find what works for you and stick with it. We don’t have to do it perfectly; we just have to stick with it and do our best.