Dr. Martina Melzer, published: 23.01.2022

 

What is Pacing?

Pacing means as much as: Know your daily energy limit. Divide your activities in such a way that you don´t consume more energy than you have available in a day.

Pacing is actually useful for everyone. It helps to not overload yourself and then lie exhausted on the couch in the evening. Instead, you divide your day in such a way that there is always enough energy. Healthy people may, of course, exceed their energy limit from time to time, for example by going on a long hike, giving a strenuous lecture at work or doing extensive gardening. But they should also listen to their bodies and take a break after the effort.

Anyone who is chronically ill or has an infection often has less energy available than a healthy person. This is because the illness or infection costs energy. Those who suffer from exhaustion due to an illness have only very limited energy reserves. This is where pacing becomes really important. And for people with ME/CFS, it's essential. But pacing is not that easy. It is an art and a science in itself. It took me a year to learn how to pace. And honestly, it's still a challenge.

 

Why Pacing is so important

Pacing is so "vital to survival" for people with ME/CFS because it helps prevent the dreaded Post Exertional Malaise (PEM) - the deterioration of the condition after too much activity.

The problem is often: there are better days and worse days. If you feel a little better, you think "Ah, finally, today I can get everything done that wasn't possible the last few days." Then you overdo it and get the receipt the next day: You lie down, feel like "battery empty", are not able to do anything. This is called "boom and bust" or "push and crash". Pacing helps to get out of this up and down, to get into a more stable state. Pacing also guides you to permanently say no, sorry, I can't, this is too much, I am too exhausted.

 

What pacing can do, what it can't

Pacing is a coping mechanism. A tool to get a better grip on overwhelming exhaustion. To stabilize the state a bit, to make life a little bit more predictable, to better manage everyday life. Pacing has helped me to slow down the constant deterioration of my condition.

With this method, you learn to recognize typical triggers that cost a lot of energy and exhaust you in particular. You can then avoid them or manage them well. With the help of pacing, I have also learned to take consistent breaks and to observe myself carefully.

Pacing is not a cure, however. You can't pace yourself healthy. What was problematic for me, for example, was that I recognized more and more triggers and avoided more and more things. I kept limiting my life. I thought that if I just rested, slept and lay down enough, then these cursed symptoms would finally stop. But they didn't.

At some point the time came for me, and this is also written in the sources I have linked below, to restrict myself a little less again. Very carefully, with a lot of patience, in baby steps, I tried to expand my radius again. Testing the limits, falling on my nose again and again. I learned: I can do more again, trust myself more, if I listen very well to my body, if I do what I do as relaxed as possible, extremely slowly, with pauses. If you combine pacing with many other small strategies, it can actually contribute to recovery from my point of view.

 

What sucks your energy?

As a healthy person, you think first and foremost that physical activity costs energy. That is  true. Doing sports, for example. In reality, however, all movement costs energy. For example, standing, sitting, lying down, turning over in bed, lifting an arm or drinking a glass of water, going to the bathroom, taking a shower.

You also burn a lot of energy mentally. Talking, reading, talking on the phone, watching TV, driving, working, taking care of family.

Emotions and feelings can take more energy than you imagine. Every argument, every upset, sadness, fear, laughter, a wedding. All of these burn up energy.

Environmental stimuli such as sounds and light, the weather also demand the organism and go on the energy account.

Some activities demand physical, mental and emotional energy at the same time (in my case, for example, doctor's appointments). And stress is one of the biggest energy robbers of all.

 

First steps

First, the most important thing is to determine the status quo. What do you do all in a typical day? Physically, mentally, emotionally. For how long? How strenuous is an activity for you? Are there things that particularly exhaust you? This means: You have to observe yourself very closely, be mindful.

An activity log can help tremendously. For example, I wrote down how many hours a day I spent doing something and how many hours I spent in bed or on the couch. I wrote down how long I did something at a stretch, what symptoms I had, what I ate, how strenuous something was, how I estimated my battery power.

A fitness tracker helped me a lot in recording my daily steps and checking my pulse. Because: the higher the pulse, the more strenuous the activity. Often, I didn't really realize how much something was exerting me. Looking at the tracker then startled me. I set myself an upper limit for the pulse, which I wanted to exceed as rarely as possible. I also set myself a maximum number of steps per day. So when the tracker was happy because I had reached what it considered its lowest step count, I knew: okay, slow down, stop.

How to find your individual heart rate so you don't overload yourself? Very difficult. These sites were very helpful to me:
http://www.cfsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope

http://www.cfsselfhelp.org/library/topic/pacing

https://workwellfoundation.org/wp-content/uploads/2021/03/HRM-Factsheet.pdf

The Australian ME/CFS organization Emerge has even released a pacing app:
https://www.emerge.org.au/blog/mecfs-pacing-app

The so-called heart rate variability, in short: HRV, can also help to recognize one's energy limit and to avoid a PEM. Roughly speaking, HRV indicates how well the stress nerve (sympathetic nerve) and the rest nerve (parasympathetic nerve) are in balance. I used an app for a few months to measure HRV.
More Infos:
https://www.healthrising.org/forums/resources/your-crash-in-a-graph-how-heart-rate-variability-testing-could-help-you-improve-your-health.353/

 

Find your comfort zone

Whether it's ME/CFS, depression, MS or cancer: all illnesses that are associated with fatigue significantly limit one's everyday life. To make the best of it, it helps to plan, set priorities and accept help.

Planning: What do you have to do this week? What costs a lot of energy? What will take less? At what time of day do you have more or less energy? Divide up your week accordingly - as best as you can. Routines help to save energy, because you have to do less thinking.

Set priorities: What's most important today? What can wait? Do you have to do the laundry today or can you do it tomorrow? Is showering three times a week enough? How can you divide activities into small units?

Accept help: Be honest with yourself. There are activities that you have to do, but they cost a lot of energy. Who can do them for you at least some of the time? Who can go shopping for you? Help you with the cleaning? Take your letters to the post office? Drive you to the doctor? This is where you really have to jump over your shadow and dare to ask for help. That way, you have more time to rest and for your recovery. And in the end, everyone benefits!

 

Practical examples

Showering: Do you have to shower every day? Are two or three times a week enough? Can you clean only your face and armpits? Do you have to blow-dry your hair? Would a stool in the bathroom help you, since sitting requires less strength than standing? I was pretty limited there for a while. And after showering, I usually had to lie down for half an hour because I was flat.

Cooking: You can cut vegetables while sitting, or you can get a standing stool. You don't have to do it all at once, you can also cut vegetables in the afternoon, put them in the fridge and put them in the pan in the evening. It has helped me tremendously to stockpile and store leftovers in the fridge or freeze them. Frozen food that is already chopped also saves work and is sometimes fresher than from the vegetable counter. Those who are too weak to cook must ask for help or request a care service.

Go shopping: Is it possible? Who can go shopping for you? Can you have groceries delivered? I couldn't drive myself to the grocery store for a while and it took a lot of effort to ask for help. With time I managed to do it myself again, but it was the event of the week: lie down beforehand, drive slowly, rest in the parking lot, use the shopping cart as a walking aid, don't forget compression socks, sneak through the supermarket with tunnel vision and work through the shopping list, don't forget the PIN from the card at the checkout if possible (keyword: brainfog), rest in the car again, drive home, go it into the apartment, lie down, leave the bags in the car and have someone else carry them into the apartment.

Cleaning: Can you do it? It's very exhausting. Can anyone help? Do you have to vacuum or is sweeping enough? Don't mop sometimes? Clean less often? Here, too, I had to limit myself a lot. Cleaning the apartment took about a week. Depending on my energy, I could do something heavier or just dust a bit. Fortunately, someone supported me here. Again, perfectionism is counterproductive.

Social contacts: Big issue. I restricted and withdrew terribly for a while. It was just too exhausting. Here, too, you have to ask yourself: what is possible? Better to just mail, message, or phone or still meet? You have to rest before and after and set a time limit. And ask yourself: When is the best time of day for you?

 

Overdid it? What is important then

You can be "the King of Pacing" and it will still happen to you over and over again: You overload yourself and fall flat again. That's okay, it happens to everyone. Don't be hard on yourself, be kind to yourself. That's just the way life is. The important thing now is not to waste unnecessary energy. In a crash, the body has to produce the energy molecules it provides from scratch again. And that takes time. That's why you have to rest a lot.

 

Important: The content on this page is for informational purposes only and is not a substitute for talking to your doctor or other therapist. The content reflects my personal experiences, research and findings that have helped me and that I therefore want to share. However, in your personal case, completely different things may play a role and other things may help. Please talk to your doctor or therapist before making any decisions that affect your physical or mental health. Also important: I don't want to convince anyone of anything here. Rather, I want to point out possible ways that hopefully can help some people to improve or overcome their Fatigue or ME/CFS.

 

PS: Of course, I research and check everything I write here as well as possible. Nevertheless, I am only human and make mistakes. In addition, I may draw completely different conclusions as someone else would. Simply because they fit my story. But every story is different.

 

Sources

ME Awareness NZ: The Art and Science of Pacing. Online: https://m.e.awareness.nz/a-guide-to-pacing-for-pwme

Stanford University: PEM-Avoidance-Toolkit. Online: https://www.omf.ngo/pem-avoidance-toolkit/

Action for ME: Pacing for People with ME. Online: https://www.actionforme.org.uk/get-information/managing-your-symptoms/pacing-and-energy-management/

ME Action: Pacing and Management for ME/CFS. Online: https://www.meaction.net/wp-content/uploads/2020/10/Pacing-and-Management-Guide-for-ME_CFS-8.pdf

Emerge AU: Stop, rest, pace. Online: https://www.emerge.org.au/stop-rest-pace

Royal College of Occupational Therapists: How to conserve your energy. Online: https://www.rcot.co.uk/conserving-energy