How Pacing Changed My Life

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Art: Elizabeth D’Angelo

A guide for people with
Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome”

Pacing is a technique that some people use to manage activity and exertion levels. Many of our readers report that pacing help them improve symptoms and lessen crashes. When people pace, they use a heart rate monitor and try to stay below a certain heart rate level (called “anaerobic threshold”).

Here’s where you can learn a great deal more about the science behind pacing and how to get started: How to Practice Pacing

BROOK PACES
– by Brook Costello

I believe if I had started pacing five years ago, I could have avoided becoming severe. A heart rate monitor really changed my life and saved me from declining further.

I was in the worst crash when I started! My heart rate would go from 70 to 120 just rolling over in bed or going to the toilet.

I think the key when you are that severe is to lower your expectations and pay attention to patterns. Pay attention to the things that trigger spikes and things that might help.

For example, my heart rate spiked worse if I rolled over and pulled the blanket up at the same time. I learned to roll over slowly, pause, and then pull the blanket up. I started doing everything in a similar manner. Slowly, one step at a time, with a lot of long pauses.

It felt comical when I started but I could see that it made a difference in my heart rate patterns. I started by aiming to keep spikes below 120, or to at least stop and pause every time I spiked over 120 so that it could come back down before I moved again.

Also be aware that even with heart rate pacing you can still trigger bad crashes from emotions, stress, sound, and cognitive use. Be careful with those things as well.

KRIS PACES
– By Kris Rudin

I’ve been doing this for six months. At first, just sitting upright sent me over the threshold.

I tried to minimize my time over the threshold, and took to lying down all day, even to eat, except for getting dressed, brushing teeth, etc.

FINALLY, las week I had a day when those activities did NOT send me over AT. The next day I still went over, but fewer times, and not as high. The whole week was MUCH better! But then I had an emergency trip to ER and a hospital stay and I’m back to where I was in January!!! 😩

But, I DID see progress. Yes, it took months and months, but it’s taken me 15 YEARS to get this sick, so I can’t expect a quick fix overnight. So, yay for pacing!! Keep doing it. Try to minimize the times and duration of being over threshold. It’s slow, but you CAN make progress.

MAGNOLIA PACES
– By Magnolia

I do a combination of pacing with a heart monitor and planned resting. When I’m up doing anything active, like light household chores, I use an interval timer app. As long as I don’t try to move too fast, I can stay below my threshold for roughly two minutes of activity then I rest to allow my heart rate to go back down. So I set my timer for 5 or 10 cycles:

  • 2 minutes light housework
  • 3 minutes rest
  • 2 minutes light housework
  • 3 minutes rest

After that, I do a planned rest of about 30 minutes to recover.

If I overdo it and find myself in Post Exertional Malaise, I do aggressive rest where I only get up to eat and use the restroom until about 24 hours. Once I start to feel better, and my body is telling me it’s ready to be active again, I do some gentle stretches and/or supine exercises, with my interval timer set to 21 cycles of:

  • 20 seconds stretches
  • 1 minute rest
  • 20 seconds stretches
  • 1 minute rest

That’s 7 minutes total of exercise. That helps work off some of the “wired” energy that’s telling me to get up prematurely, and helps with pain and stiffness from laying down. I’m probably more regimented than most, but that’s just what feels comfortable for me due to my autistic brain. It takes a lot of energy to transition between rest and activity if I try to do it without the timer.

LILAC PACES

Before I started pacing, I couldn’t make recreational excursions with my family. I had to severely constrain my activities, even at home, in order to cling to that last little bit of ability to drive when absolutely necessary.

Once I started using a monitor, I was astonished at how much some things I did not consider taxing were very taxing, and also pleasantly surprised that a few things I’d been avoiding were actually not so bad. For example, my heart rate monitor showed me:

If I’m resting in my chair, my heart rate would stay below the threshold. Then when I get up, it takes about 2 minutes to exceed my threshold.

However, if I’m resting in my chair and doing cognitive tasks (paying bills, reading something complex, or – god forbid – talking on the phone to some bureaucratic *$%&@#) my heart rate would still stay below the threshold, but… Then when I get up, it would immediately skyrocket.

So I’m still learning to pace. Sometimes I tell my family: “I need to do the bills, so if you want anything for the next hour, talk to me now, because once I start on this, I need to be left alone, OK?”

Now that I’ve been pacing for a while, I can get more cognitive stuff done. I can even get out of the house for “just for fun” things every few months… I’m working on trying to get out once a month, regularly.

My advice for newbies:

🌷Buy the best gear you can

🌷 But don’t wait to try pacing until you can afford the gear.

🌷 Don’t push once you leave your safe range. Sit the hell down by any means necessary.

🌷 Lay down in the hallway with your feet on the wall at the doctor’s office if you have to.

🌷 Sit on the floor in the parent-teacher-conference if you have to.

🌷 Sit on the floor at the garage while waiting to check out.

🌷 Tell that *$%&@# on the phone that you’ll have to continue the conversation at a later time.

It’s worth making those choices, because it gives you more spoons to work with later, and helps you build spoon-capacity.

FACEBOOK GROUPS

THANKS FOR READING

🌷 This page is part of the free online guide: How To Save Spoons: A Self-Advocacy Guide for ME/CFS

🌷 Art on this page by Robin Mead and Elizabeth D’Angelo. Page Updated: 8/1/19

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