Pacing
Consistently keeping your activities and exertions (physical, mental, emotional, social) below the level that causes a worsening of symptoms.
Pacing terms like “energy envelope” and PEM defined here.
Why is Pacing important for people with ME/CFS and Long-COVID?
A hallmark symptom of ME/CFS and Long-COVID is PEM, or Post Exertional Malaise, a worsening of some or all symptoms after exertion (physical, mental, emotional, social). And, though neither disease has any consistent, proven treatments or cure, learning energy management can help stabilize, minimize, or avoid many of the worst symptoms.
Pacing is a proven energy management technique that has been shown to work to reduce or avoid symptoms from PEM.
About 90% of people find Pacing “is appropriate to their needs” for managing the illness, and, for over half, symptoms or severity measurably improve.
Pacing can lend a sense of control over your illness and improve your quality of life. For some people, Pacing can help increase your capacity for exertion over time.
Not pacing, often expressed as “pushing and crashing,” leads to worsening symptoms and can cause long-term or permanent damage or deterioration.
For more on why Pacing works, see here.
Practice Pacing
Note: Pacing aims to stabilize symptoms. It is not a cure and, while it often gives the patient increased symptom stability and control over their life and energy, it does not necessarily lead to a consistent increase in ability or capacity for exertion over time.
FEEL what energy you have for today
Pacing requires knowing your daily energy limits, or your “energy envelope.” Everyone’s available energy for the day is different, and it may also be different for you each day.
To learn about your own energy envelope, you need to determine your “usual” baseline. Basically, what can you “usually” do? Of course, your baseline can change, sometimes drastically, over the weeks and months, but what is it right now?
Ask yourself, what can I realistically do in a day without triggering PEM:
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How many hours or minutes can I sit upright, stand, walk or do minor chores (dishes, shower)?
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Can I do any vigorous activity (work, exercise, going out with friends)? How much?
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How many hours do I need to recline, rest or sleep?
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Can I do more later if I rest or sleep now?
Note: Over time, it often becomes easier and more “intuitive” to know (or “feel") what your energy envelope will be on any given day.
However, when you first start Pacing, you may need to measure, record and track your activity patterns in a structured way.
More help and tools coming!
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Module 2 of this email series will be: Recording and tracking tools
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Module 6 will be: Apps and measurement devices to help manage your illness.
LEARN what triggers or worsens PEM
What depletes your energy, or triggers/worsens your symptoms? Different types of activities, exertions and stimulations affect different people more or less, and affect the same person more or less at different times.
Determine what the triggers are for you, then determine how much you can take of each of these exertions before you start to have worsening symptoms.
Which things you can safely do, how much of them, what time of day, in what order, and in what duration are all personal to you.
Common triggers
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Physical (anything from simply sitting upright, standing or showering, to exercise)
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Mental (work/school, thinking, listening, speaking, reading, calculating)
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Emotional (both positive and negative emotional response can expend energy)
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Social (being with family, interacting with friends, social media)
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Biological (examples may be digestion of a large or high-fibre meal, having your period)
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Stimulation (light, sound, chemical, scent, vibration, touch)
ADAPT your life and activities to stay within your energy envelope
The key to Pacing is to plan activities and exertions for the day that will take LESS energy than you have available for the day (stay safely within your energy envelope).
To do this, you must think differently about how you live your life. You may have always had lots of energy or been able to “push through” to get things done. You cannot and should not do this with ME/CFS or Long-COVID.
“Pushing through” when your body tells you it is too much WILL trigger PEM and may land you on the couch, in pain, feeling weak and sick, or worse for days or even weeks and months.
The answer is Pacing and here is how to do it:
Prioritize, re-assign, eliminate
Prioritize the activities that are the most critical or the most important to you. Then re-assign or eliminate as many as you need to avoid triggering PEM.
Switch activities
Switch between different activities more often and more regularly than you would have done prior to your illness.
Control Sensory input
Be aware of noise (background music/TV/family sounds), smells (cooking, mown lawn), vibrations (moving car), light, texture of materials that are touching you, hot or cold.
Monitor biological markers
For some people, high heart rate, high or low blood pressure, sweating/chills, starting your period and other bio-markers are early warnings of possible PEM. Take these as a sign to rest more and be more vigilant.
Adapt activities
Adapt the activities that you must do or are important to you to make them take less energy.
Rest
Rest regularly and often until you know your limits. Rest usually means sitting, reclined, with feet up, or lying down, possibly alone, in dim light and low noise.
Pay attention to time of day
Are you able to do more without worsening symptoms at certain times of the day? Is it different for physical and mental exertion?
Medicines and Treatments
While there is no cure or single effective treatment, treating individual elements and symptoms of the illness (like pain or nausea) can work alongside consistent Pacing to stabilize and sometimes improve your illness.
