Pacing
Learn more about Long COVID, safe rehabilitation and pacing.
Visible is the activity tracking platform for Long COVID and ME/CFS.
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Video Transcript (Audio as Text)
Pacing
[Take breaks, pause, and return to this video as you need, to support your pacing needs]
Pacing is managing the balance between activities and rest.
People with fatigue, post-exertional symptom exacerbation, and other energy limitations often use pacing to enable participation in life activities within limits caused by illness. Pacing may be described as trying to stay within an energy envelope or explained with ideas such as the amount of "battery" or "spoons" a person has available for activities or tasks. However, this balancing act of therapeutic rest and doing as many life functions as possible can be challenging to understand, describe, and do.
Learning to pace can be complex and may change over time. For some people, however, pacing is not possible due to the severity of their illness. For those who can use pacing, essential things in life such as bathing, cooking, household management, working, family and social life, and intimate relationships may feel like they go against the ability to pace. Some people who don't pace may experience a yo-yo effect, resting until better enough to get things done that always need doing, followed by needing to rest even more or using up all energy, resulting in a crash or relapse. This rollercoaster cycle of repeated crashes does not work and can cause immediate and longer-term problems.
Finding the balance between how much activity you can do and how much rest helps you achieve these activities without crashing is the purpose of pacing. Small changes can help avoid crashes, and adequate rest can improve symptoms. However, when living with Long COVID, the amount of available energy may differ between days, and can be affected by different things like the weather, hormone changes, or other illnesses. So the balance between activities and rest may need regular adjustment, with less or more activities and rest, to find this right level. Pacing can be changed and adjusted, but only depending on symptoms. This is why terms like "pacing up" or graded approaches do not make sense, and phrases like "boom and bust" are patient blaming and unhelpful.
So what do we mean by activities? Activities include any physical (showering or walking), cognitive (working at a computer or reading), social (being with friends or family), emotional (being excited or sad) and sensory (loud noises or bright lights) tasks, all of which use energy. We all want and need to do activities, and pacing is not about avoiding all activities. Instead, pacing may help to do essential things still.
Rest is individual and different for everybody. It is finding calm in the chaos. Regular resting, which might include sleeping during the day to add to quality nighttime sleep, taking a break, or finding a quiet space, can help to top up energy levels. Things that may have felt like rest before Long COVID, such as watching movies, listening to music, or reading, may no longer be restful. Doing nothing can feel hard or boring, or your mind might be unable to switch off. Some ways of doing things help calm the mind to support resting, such as slower breathing, mindfulness, or something relaxing. When living with a reduced battery and navigating this often-changing path, it is necessary to listen to your body, prioritise the tasks you want and need to do, including the fun ones, and accept that rest is essential. Taking part in family and social roles may still be possible, though this may now look different. Give energy to things you find meaningful and satisfying to support your well-being and how you feel. Rest is a therapeutic and meaningful activity, even if the world doesn't want you to think it is.
Alongside rest, pacing can also include conserving or managing energy to do tasks in ways that use less energy or use energy in efficient and smart ways, such as equipment to help with walking (wheelchair or mobility scooter), sitting down for showering and meal preparation (perching stool), or breaking activities into smaller tasks, such as cleaning one area of a room at a time. Occupational Therapists can help with strategies and equipment to support pacing and managing energy.
Cognitive activities, like reading or using computers, can be more challenging to monitor than physical activities. With cognitive activities, you may feel you've not done anything but still feel your battery empties. Cognitive pacing can be supported by reducing background noise by using ear plugs, switching between tasks, planning to take regular breaks, keeping a diary to watch for trends in how you feel during and after activities, turning off videos to have only audio during online meetings, and changing screen colours.
Technology can also help pace activities, manage symptoms, and avoid flare-ups or crashes. Even though technology is often designed for a healthy world, technology can be used as a guide, such as monitoring your heart rate, pulse, or step count, alongside listening to your body and how you feel. As a result, technology can provide an understanding of how hard your body may be working during or after activities, allow you to monitor symptoms, predict and reduce the risk of future crashes, validate how you feel, and create a sense of independence or control.
Acceptance of the need for rest and that rest needs to be therapeutic is part of pacing. Society, however, may not always accept rest, as it contrasts with unhelpful societal expectations of being hard-working and productive. In addition, many health and work policies do not help someone pace. So it is crucial to recognise that even with huge personal effort, societal, cultural, legal and political barriers exist to pacing. Even though people may understand pacing, how to do it, or who it may be helpful for, it may not always be possible to pace.
Everybody is different, and pacing is individual. Trying things that sometimes do not work can help to find out what your needs are. There is no guilt or shame if you feel like you have not found the right balance or don't always pace perfectly. Be kind to yourself and check in daily to see if you need to change plans, the amount of rest, or the types of activities.
Pacing is a journey that can take time. You will likely receive lots of poor advice or opinions. But it is your body and your life. You are living and learning how to approach pacing 24 hours a day. Trust your instincts, prioritise your needs, do things that make you happy, and know that pacing is a way to take care of yourself. You are constantly learning, even when the goalposts regularly move. You and others with the same health challenges have many experiences to share. There will be people that help, and you may need to ask others for help or to set new boundaries. But you are in charge. This is your journey. Nobody else's. You are the one who is going to find the balance that works for you.
Credits
This video was illustrated and edited by FisioCamera:
https://www.fisiocamera.it/ fisiocamera@gmail.com
The script was written and narrated by:
Darren Brown, Physiotherapist, UK
This video received consultation by:
Lindsay Skipper, Long COVID Physio Peer Support Committee, Physiotherapist UK
Prof Todd Davenport, Chair Long COVID Physio, Workell Foundation and Department of Physical Therapy, University of the Pacific, Stockton, California, USA
Dr Julia Moore Vogel, Scripps Research, USA
Prof Leonard Jason, Director of Center for Community Research and Professor of Psychology, DePaul University, USA
Lisa McCorkell, Co-Founder Patient Led Research Collaborative, USA
Helen Skiffington, Long COVID Physio AHP Committee, Occupational Therapist, UK
Ciara Breen, Long COVID Physio AHP Committee, Occupational Therapist, Ireland
Dr Michelle Bull, Co-Founder PhysiosForME, Physiotherapist, UK
Sammie McFarland, CEO and Founder Long Covid Kids, UK
This video was peer-reviewed by Long COVID Physio Leadership Team.
Date Last Revised: 9th August 2023