Helping you understand the energy limits of ME/CFS and Long COVID
People with ME/CFS and Long COVID are not able to do all of the activities they used to be able to do. We experience an increase in symptoms after simple activities that would not have been a problem before ME/CFS or Long COVID came into our lives.
This is because people with ME/CFS and Long COVID don’t make as much energy as a healthy person at a cellular level. It is like a battery that never recharges fully, and it drains faster than normal.
When our “battery” gets low, our symptoms get worse and our ability to function and move our bodies declines. If we keep pushing even though our battery has drained, we will “crash”. This is the “red zone” known as post-exertional malaise and only complete rest is a safe activity.
Remember – our batteries are never the same as when we were healthy. Even when we are resting and pacing, what we can do in a day will be less than before.
Ask yourself these questions:
- How much rest do you need to recharge?
- Are you constantly draining the battery without being able to refill it?
- Is that balancing out with what you are doing during the day?
- Do you need to build in more rest time?
I feel like a battery that is never able to be recharged fully despite resting a lot and limiting my activities to only the bare essentials needed to get by” quote from NAM
How do we stop our battery draining too fast and minimise symptoms? We do what we can with the energy we have and adopt a stop, rest, pace approach to all of your daily activities.
Stop
Activity before you experience symptoms, or as soon as you notice an increase in symptoms.
Rest
Take regular rest breaks throughout the day.
Pace
This involves breaking activities up with periods of rest, to allow our battery to charge. Everyone will be different in how much we can do and how much rest we need.
What is the best way to rest?
Rest is individual and you may like to note how you prefer to rest physically and mentally. You may want to try different strategies to see what works best.
For some, complete rest involves absolutely minimal activity, which means no stimulation such as TV, social media, reading or listening to music.
For others finding a way to relax the body and mind may be just as beneficial. Rest can be many things and may differ depending on your symptoms and severity of ME/CFS and Long COVID.
Some ideas include:
- a 20 minute audio meditation
- sitting in nature
- lying with your legs elevated and a mask covering your eyes
What is Pacing?
Pacing involves undertaking less activity than what you have energy for on a given day, and breaking activities down into short bursts, with added rest breaks. For example, instead of taking a shower, brushing your teeth and combing your hair in one go, pacing might mean that you take a shower and then rest, until you feel ready to undertake the next activity.
The aim of pacing is to leave some ‘energy in your battery’ at the end of the activity. Some ME/CFS doctors advise patients to try to do no more than 50-60% of what they feel they can do. Pacing, like any other skill, must be practised. It becomes easier over time.
An increase in symptoms after adding additional activity may indicate that you have exceeded your energy limits and you should reduce to the previous activity level.
If possible, you should not attempt more activity until PEM has reduced.
Be realistic
In an ideal world, you would always be able to stay within your energy limits and would never experience PEM but this is probably not possible or realistic. Many people have work or family commitments or live alone, and daily life may take you beyond your energy limits.
In addition to this, sometimes there are activities that you want to do, and that are important for overall wellbeing, that will take you outside of your energy limits. It is important to be flexible and realistic, but also to return to the principles of pacing and try to build these activities into everyday life.
How to get support with Pacing
Our Telehealth Nurse Service provides free consultations where you can get assistance with symptom management and guidance on pacing.
