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Supporting Children Living With Long Covid to Manage Their Energy With Pacing Penguins

Updated: Jun 15, 2022

One of the most common symptoms experienced by children and young people with Long Covid is fatigue or 'Energy Limitation'.


This blog discusses how Long Covid affects energy use, how children describe their fatigue and then uses our Pacing Penguins poster to share tips on how pacing can support recovery.



Pacing Penguins Energy Management Poster


Created by people with Long Covid, for children and young people with Long Covid.


Our poster aims to address the challenges children and young people may experience with fatigue/ "energy limitation", and doing all the activities that they need and want to do. It is designed to be used alongside our Cautious Tortoise Poster.


This is a long blog. You may find it helpful to print it out or read it in sections.





What is Fatigue/Energy Limitation?


One of the symptoms of Long Covid we hear people talking about is something called fatigue. In general life this can be a word some people use to mean “very tired”, but when it comes to Long Covid it is a confusing word to use. This is because Long Covid fatigue can feel more like we have no energy left in our bodies at all, and when we feel like this our legs and arms might feel heavy or we might get bad headaches, feel dizzy, mix up our words or experience other symptoms.


The type of fatigue that people living with Long Covid get is different to that ‘ready for bed’ feeling or ‘had a busy day’ tired. The fatigue experienced with Long Covid can be overwhelming; it is not possible to "push through". Some people with similar illnesses to Long Covid call their fatigue “energy limitation” and they talk about how they can best use the reduced energy they have.


Describing Fatigue


Describing this lack of energy is a challenge. Here are some examples of language used by children and young people from our support group to describe how they feel:

  • Heavy

  • Tired

  • Exhausted

  • I feel lazy

  • I can’t concentrate, sooo tired. I can’t think straight

  • Like my batteries have been removed.

  • I feel like an old man

  • I feel rubbish

  • Fuzzy eyes and fuzzy brain. Body feels crinkly. Can't get my brain to work. My mouth can't say what I want it to.

  • Feels like I haven’t had any sleep for days/years

  • So tired that you can't think straight and feel that you're going mad.

  • Drained

  • Energy just goes to -1000





What is Post Exertional Symptom Exacerbation (PESE) and why do I need to know about it?


Some people living with Long Covid find that, when they do an activity, they have no energy left straight away. For others, it can take up between 24-72 hours after an activity to feel drained of energy or find that their Long Covid symptoms are becoming worse.


This is something called Post Exertional Malaise (PEM) or Post Exertional Symptom Exacerbation (PESE). This basically means that your energy limitation, or worsening symptoms, is caused by activity (exertion).


PESE is a symptom that is well documented by people living with Long Covid. It's important to know whether or not you have PESE because if you do it is best to make any changes to your activity level very slowly and generally graded exercise therapy, where you add in extra activity no matter how you feel, is not recommended for you.


Keeping a diary can be helpful. Try it for a week or two. Record activities, symptoms and feelings. This will help to work out if PESE is a difficulty for you.





Introducing the LCK Pacing Penguins Poster!






Why are we talking about penguins?


Using an analogy can help to explain things so we are going to use a penguin analogy to help explain how to pace your energy.


  • We all need energy to be able to take part in activities.

  • Penguins get their energy from fish.

  • The more fish a penguin has, the more energy they will have.


A penguin has to get or save fish to be able to have energy available to do the activities they need to do each day. Once a penguin has used up the fish they have, they can not get more fish until the next day.


Energy Levels and Long Covid


The types of things that can help you save energy are included in the 'How to Gain Energy' box in our poster.









What Energy Levels Are Common or Usual?


Most people, when they are well, have a good amount of energy that they can use each day, and may even have some energy to spare; they probably don't have to think about their energy levels too much.


Sometimes when they have a particularly busy day, or if something unexpected happens they might be more tired than usual but, getting a good night's sleep generally means that they are back to their usual self the next morning.



What Energy Levels Are Common for People Living With Long Covid?


People living with Long Covid often find that they need to plan to manage their energy levels. Each person living with Long Covid is unique. This means that each person living with Long Covid will have their own usual energy level. Energy levels can change between days, or though out each day depending on:


  • Sleep (quantity and quality)

  • Food

  • Rest

  • Environment (temperature and noise)

  • Activities that the person has done

  • School/work

  • Physical or mental exertion

  • Emotions


Long Covid Kids aim to help children and young people living with Long Covid to have a greater understanding of how to balance energy levels. These guidelines are written by people living with Long Covid who know how it feels, but who also have professional experience supporting people with energy limitations.




Let's Think About Penguins can Pace



Imagine two penguins.

Imagine each fish they eat as a unit of energy.


Peng is a healthy penguin who has 20 fish each day, 20 fish provide enough energy to do all of the activities in the examples below, with some energy to spare.


All activities require energy! - Examples

  • Eating uses 3 fish

  • Waddling over ice uses 5 fish

  • Swimming uses 3 fish

  • Chatting to another penguin uses 2 fish

  • Thinking uses 2 fish


However, Poe the penguin is living with Long Covid and has 10 fish each day. 10 fish is just an example because each penguin is unique - it could have more or less - but this helps us understand that living with Long Covid can mean we have less energy to start each day.



Now it is time to do some maths!


It takes Peng and Poe half an hour to waddle over ice to get to the water to swim.


How many fish does each penguin need?


How many fish do they each have left?


What else can they do?


Answers


Waddling + Swimming + Thinking = ?

5 + 3 + 2 = 10


Peng would use 10 fish, and have 10 fish left that could be used for other activities.


Poe would also use 10 fish, but only had 10 to start with. Poe would not have any fish left for other activities.


After swimming they normally sit and chat.


Doing the activity this way means Poe would not have enough energy to sit and chat after swimming.


Allowing others to help


If Peng helped Poe by pulling him on a sled across the ice, Poe would have enough energy to swim and chat, and also have something to eat later.


Allowing other people to help with part of a task is a useful way to save fish.




How Long Covid Symptoms Affect Energy Use


Components of Long Covid such as those listed below can often affect a person's available energy:


  • Pain

  • Healing

  • Poor Sleep

  • Symptoms

  • Mental Health


People living with Long Covid can wake up at the beginning of each day with less energy than we did before getting COVID-19. Sometimes, we can wake up more tired than when we went to bed. On days like these, we might not have any spare energy and may need to rest.


So what we have to work out, is how much energy each daily activity uses. As we have said before, each person is unique so this can't be worked out for you but we will help you to work it out for yourself.


Activities can require different amounts of energy on different days depending on how your symptoms are on any given day.


Some people living with Long Covid find that physical activities take more energy and some people find activities involving thinking, talking or concentrating use more energy.


Sometimes, activities we enjoy use less energy than the ones we don't.


Examples

  • If you like maths but don’t like history, an hour of maths homework might take half as much energy as an hour of history homework.

  • Crying and getting upset or angry can use lots of energy.

  • Having a laugh with friends can also use a lot of energy but the difference with laughing is that it might also help to top up your energy by making you happier.

Just like any new skill, learning to manage our energy levels takes time and practice.


Other things that are "Energy Drains" are shown below:












Sensible Energy Use


Planning Ahead


Planning ahead can help us avoid running out of energy, and/or help reduce the risk of worsening symptoms. Try to avoid using all of your available energy at once or in a short space of time.


Example


When we feel very poorly, getting washed and dressed can take all of our energy for the day. So if we get up, washed, dressed and eat breakfast all in one go, we might find that we have used all our energy for the day, and need to have a sleep to top up our energy levels.


One suggestion to manage this could be:


Get up and eat breakfast first (remember food = energy).

Then have a sit or lie down for ten minutes.

Then have a shower.

Then have another lie down in your towel until you have cooled down.

Then dress into your underwear.

Pause again.

Then put on the rest of your clothes.

Finish with another rest.


Although doing this might still take the same amount of energy, the rests can help top up our energy levels. This might mean we can also do something we enjoy later, such as talking to friends. Doing things we enjoy is an important part of recovery.



Accepting Help


Having help with part of an activity, or doing the activity in a different way can save energy.


Examples


  • Sit in the shower rather than stand.

  • Have a seated wash at the sink.

  • Allow someone to help with dressing.

  • Get dressed in the morning and wash in the evening.

  • Plan what you want to wear and get the clothes ready the night before.



Dealing With the Unexpected


It is advisable to save some of our available energy for the unexpected. This isn't always possible so be aware that unexpected activities may make you more tired or have more symptoms so you might need to add in extra rest after they have happened.


Examples


  • A friend dropping by

  • An unexpected problem

  • A symptom flare-up

  • A fun surprise

  • A shock



Practice Makes Progress


It can take time to learn how to save, and use energy wisely, There will be times when we don’t quite get it right. This is a normal part of learning a new skill and we need to be kind to ourselves if we make mistakes. It can be helpful to talk about what can be done differently and keep a diary to look back at.


Sometimes we can't work out a reason why our energy ran out, and this might simply be a part of Long Covid that we are still trying to understand.


When we feel less well, we have to be gentle with ourselves and not push too hard. Remember to keep talking to your Doctor about any prolonged or worsening symptoms.



Expectations and Borrowing Energy


Some activities are really important to us, and we may be able to 'borrow' some energy from the next day.


'Borrowing' can make us more symptomatic but we might choose to make this decision occasionally.


Save 'borrowing' for really special or important events (like a birthday party, wedding reception, concert, shopping trip, etc) because it often means taking energy from quite a few other days.


Allowing for the likelihood that 'borrowing' may result in having less energy means we can plan quiet days before and after the event where we expect to use less energy than usual.


Expecting to have less energy means that we are better able to manage those days and less likely to get as upset by having to make these changes.



Ways to Approach Special Activities


Finding new and enjoyable activities can be really successful for some people. Other people prefer to adapt the activities they usually enjoy, so that they can still do things that make them happy, but in ways that use less energy.


Examples



Kirsty loves reading, but when she got Long Covid she found it difficult to concentrate and her eyes got sleepy, very easily. Reading was very important to her, so she switched to listening to audiobooks instead, and did things like listening to one chapter, stopping for a rest, and then listening to another chapter. Over time she has been able to go back to reading print books but it still takes her longer than before she had COVID-19, and she makes sure to rest more often.



Sammie enjoyed walking by the sea, but when she got Long Covid she found all standing activities too much of a challenge. Being outside was important to her, so she switched to sitting outside listening to the birds and occasionally walking a few steps in the garden. Over time she was able to go to the beach and walk to sit in the sea, and eventually floating and bobbing on good days. She isn’t able to go for long walks yet but she can now enjoy a swim with friends on good days, and this makes her really happy.


Making a list of low energy activities to enjoy on low energy days can be helpful. Enjoying an activity for much less time, even if it is only for five minutes can make us feel much brighter.


Here are some additional tips for "Sensible Energy Use"







How Pacing Energy Can Help to Support Recovery


When we manage our energy levels well we can find that we start feeling better and are able to do a little more.


Feeling Energised? Be More Tortoise Less Hare


Avoid doing too much on a single energised day. It can be exciting to feel energised but easy to use that energy up too quickly.


Waking up regularly with more energy is a good sign, and it may mean we are ready to do a little more. This is often a time that we feel like we are ready to go back to doing what we did before we were ill. Some people will be ready. Other people will need more time.


See the Cautious Tortoise for more guidance.




Doing too much too soon can cause a set back. This means we can feel like we have taken a backwards step in our recovery. It can happen when we use all our energy up.


It is important to know that if symptoms get worse and can't be linked to using up energy it is advisable to seek advice from a doctor or another health professional to see what might be causing this.


When we do feel better it usually means we are doing everything right.


It is wise to make any changes to activity levels slowly, to make sure we are ready and not using up more energy than we think.


Time is a great healer


Over time adults, children and young people have recovered from Long Covid. The guidance in our blog is a useful resource to support recovery.



Who else can help?


Getting pacing right can be tricky, and sometimes we might need help from other people to work out how much energy each activity takes, or how to reduce our energy drains. But there are health professionals who can help - and they are called:


Occupational Therapists


An Occupational Therapist (OT) is a health professional who specialises in helping people to do the things that they have to, and want to do. They can help find ways to make activities easier to do, provide equipment and other ways to support recovery. A doctor can refer you to an OT. Find out more here. Occupational Therapists can work in hospitals but they can also come and see you at home. They might work for the NHS, for Social Services, your School or Privately.





You can also find out more information about Occupational Therapy for Long Covid here.





The Royal College of Occupational Therapists Quick Guide


The Royal College of Occupational Therapists (RCOT) are the professional body for Occupational Therapists. They developed a quick guide for OTs on how they can help children and young people with Long Covid. This was published after consultation with Long Covid Kids, in December 2021.




Where can I find out more?


Download your own copy of the Pacing Penguins Poster Below.

Pacing Penguins_update
.pdf
Download PDF • 398KB



LCK Senior Occupational Therapist

LCK Occupational Therapy Student

CEO




Published: 23rd December 2021

Last updated: 24th March 2022





 


About


In 2021 Long Covid Kids became the first UK-based, international registered charity advocating for families, children and young people living with Long Covid.

The charity focuses on recognition, support and recovery and has already received recognition from the NHS and the Centre for Disease Control in the USA, as well as being a recommended resource in the NICE Long Covid guidelines.


Support Our Work


While children are living with life changing symptoms and families struggle to seek support, we need to be here. Your donation will be used directly to support families living with Long Covid. Find out more about our Impact.




Our Mission


Purpose
  • We believe all children should be able to thrive and look forward to a positive future. That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.

Our Vision
  • To achieve recognition, support and recovery for Long Covid and related illnesses in children and young people




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