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Activity and pacing

Managing activity is an important part of living well with fatigue. It helps you to build a firm foundation for recovery.

Why do I not have energy some days?

Most people have days when they feel they can do more. Some days they may have more to do which mean they are more active than usual. After busy days, many people notice they feel quite fatigued and worn out, and feel they need to rest more.

There is not always a pattern to these ‘good’ days and ‘bad’ days. Most people do more on their ‘good’ days as they feel more able, and less on ‘bad’ days so they can rest.

Boom and bust cycle

This is called the boom and bust cycle:

  • You have a good day with more energy and motivation to be active, or you have lots to do that day
  • You are doing more things and maybe you feel like you need to catch up or push through
  • You end up crashing and feel fatigue. This leaves you with less motivation and a low mood
  • You need to rest and recover so you cancel plans and stay home doing less

The boom bust keeps you stuck in a pattern of good and bad days. Over time people often feel as if their symptoms are getting worse and feel they can do even less than before. Although it helps you cope from day to day it is not a helpful pattern for recovery.

Illustration of boom and bust graph with activity slowly going down

Pacing

Pacing is a way of reorganising how you do every day things such as going to school, seeing friends, and doing your hobbies. Using pacing can help you to do more things and feel confident that you will be able to do what you planned.

Many people find that they begin to improve once they accept the changes brought on by their chronic fatigue, and follow a realistic and achievable approach to getting better. We appreciate how frustrating and difficult this can be.

Pacing is an approach that is planned around your activity choices. It helps you move away from a lifestyle that is controlled by your symptoms.

Your activity safety zone

We all have levels of activity that we can manage on a daily basis. These activities do not cause lots of fatigue or pain after doing them.

If we suddenly did something that needed much more strength, stretching or energy than usual (such as lifting something heavy, or going for a long run) we would expect to feel sore and tired. These levels are called thresholds or our comfort zones. They are there to keep our bodies safe and well.

With persistent fatigue people notice that their levels (thresholds) are lower than they used to be. You may worry about making things worse or just feel you cannot do things as they did before.

Our bodies change very quickly to adapt to new situations. When a person does less, their body also changes. For example muscles shorten, joints become stiff and energy levels fall. It now takes less activity to reach our lowered thresholds. On top of this, you may experience fatigue and pain. This is called ‘deconditioning’ and is a normal result of reducing activity.

The boom and bust cycle shows how, over time, people feel their ability to do all the things they want gets less and less. The more they push through, the more it triggers their symptoms, which takes longer to recover.

What is activity?

Activity is anything you do that needs mental or physical energy:

  • Physical tasks include getting up, showering, dressing, walking, travelling and sports
  • Mental activities include watching TV, using your phone or computer, school work, reading, concentrating and multi-tasking
  • Social time include using your phone or being with friends or family
  • Emotional situations include having arguments, feeling low or anxious or being under stress. Emotions often use up lots of energy

Each person can cope with different levels and types of activity. Understanding what your ‘safety zones’ are, and being clear about what you actually do each week, can help you manage things more effectively.

Activity diary

Keeping a record of when and what you do helps you to look at your own lifestyle, and plan changes that can help your recovery. You will be given an activity diary in your energy management sessions. When you have filled it in, your diary will show the times you are asleep, resting, and doing low, medium or high levels activities. Your therapist will help you make your pacing plan from this information.

Get organised

Be consistent about the main things you do every day. This means setting regular times for going to bed and waking up, all your meals, including breakfast, and for regular, short rests or breaks. This will form the framework that you can plan your activities around.

Finding your baseline

Your baseline is the amount of activity you can do without making your fatigue and other symptoms worse.

To be effective your baseline needs to be at a level that you can manage on good and bad days. At the beginning it might feel you are doing less because you are taking an average level of activity rather than following the highs and lows of the boom and bust pattern.

Illustration of baseline and activity graph

Each activity has its own baseline that will change as you recover. A good start is to set your baseline at half of what you can do on good days. Your therapist will be able to help you with this. You may need to divide up the activity into smaller chunks to be able to manage a longer time (for example a school day).

It is also important to think about how often you can manage an activity through the week.

On good days you may feel like you need to ‘catch up’ on things you missed but you need to resist this temptation to avoid over doing it. Gradually build up your energy so eventually you can do more on any day, not just your good days. Stick to the plan as best you can.

Activity plan

Below is an example of mapping out a day. In between waking up, meals and bedtime, you can add your daily activities and planned breaks. You will probably need a different plan for weekdays and weekends.

Illustration of day activity timeline

Sleep and regular rests are essential to help you manage your activities.

Your therapist will give you more information about sleep and good resting. If needed they can advise your teachers about how you manage your school day.

Increasing activity

Once you feel you can manage the things you have planned, without experiencing boom and bust days, you can start to increase your activity levels.

You can do this by:

  • Lengthening the time you do an activity. Around 10 percent increase is a good start. Do not try to increase everything at once
  • Increasing how often you do something each week such as walking the dog 2 times a week rather than 1 time
  • Adding in an activity you have stopped, or trying a new one. For example introduce some exercises or making contact with an old friend

The effects of changing activity

Our bodies react to change in many ways. You may notice that instead of having good days and bad days, you may just feel okay for a while. This is a good sign that means things are settling down and finding a level.

You may still have some fatigue such as extra stiffness or aching in the first few days after doing something new. This is normal and is your body’s response to doing things differently. At times like these it can be easy to feel worried or low. Symptoms usually settle down as your body adjusts.

Recovery will happen alongside your fatigue and other symptoms. Focusing on what you can do, rather than what you cannot do will really help you to move on. Over time your thresholds will gradually increase.

Flare-ups

Flare-ups are a very common part of managing energy. They happen for most people during recovery. Flare-ups can be triggered by many things including:

  • stressful events
  • illness
  • low mood
  • anxiety
  • increasing activity
  • dealing with new demands

Your therapist can help you make a personal flare-up plan.

What if it does not work?

If you are noticing that your fatigue is increasing and your sleep is more disrupted, go back to your baseline to check on how much and how long you are doing things for. You may need to make adjustments if there are other things going on in your life that need your energy and attention.

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Disclaimer

Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.

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