Activity Management: for Young People Living with Fatigue Conditions

Activities can be lots of things. They can be physical (such as walking) cognitive (requiring concentration and memory such as schoolwork), and social (like texting a friend). All activities use energy, some use emotional energy, others are relaxing. Different activities might be more or less demanding for you.

• Cognitive (thinking) activities include concentrating on schoolwork, talking to friends, playing video games, reading or texting.
• Physical activities are any kind of movement that uses energy, not just exercise or sport; they include functional activities such as getting out of bed, climbing the stairs, washing your hair, walking to school or baking a cake .
• Social activities; include chatting with friends at school or online, eating with your family or going to a party.
• Emotional activities could involve speaking about something that is worrying you or looking at social media.

You might be someone living with chronic fatigue syndrome (ME/CFS) or another fatigue condition and may find it difficult to take part in daily activities or activities you previously enjoyed. You might experience an increase in symptoms after certain activities and find you need to rest or sleep more. It is important to stabilise your activity levels and then build up gradually.

Here are some strategies to help you get back to the things you want to be able to do. Everyone is different and you may need to adapt these for your own situation. If your symptoms are mild, you may be able to progress more quickly. If your symptoms are more severe, you will need to use a more gradual approach.

Boom and bust

It can be frustrating and upsetting not to be able to do the things you want to do and tempting to do more on a day when you feel better or when you don’t want to miss an important activity. This can lead to a worsening of symptoms and be followed by having to rest more

to recover. This is known as a ‘boom and bust’ pattern. Over time, boom and bust can lead to you doing less activity and make it more difficult to stabilise your symptoms. Many young people report that stabilising activity (pacing) is a good way to start to manage their energy better and reduce the flare-ups in symptoms.

PACING or energy management

Pacing is a way of balancing activity and rest: finding a manageable routine with realistic amounts of sleep, rest, activity and social interactions. Pacing helps you to make your activity and energy levels more consistent and reduce setbacks. Before starting to increase your activity it is helpful to stabilise your routine.

Rest

Getting regular good quality rest is important for managing and improving symptoms. Taking regular rest breaks throughout the day before you get too tired is important. Restful activities vary i.e. reading can be restful for one person and tiring for another. Experiment with relaxing activities such as reading, colouring, listening to music, simple breathing exercises or mindfulness. Try to avoid using screens when resting. While taking rest breaks is usually helpful, sleeping in the day can have a negative impact on the quality of your night-time sleep. It can be helpful to gradually reduce daytime naps.

Taking regular rests to recharge and ‘top up’ your ‘batteries’ will help you to manage your energy. Try to avoid completely draining your batteries!

You should aim to establish a good pattern of sleep, mealtimes and activity. Having a regular routine, that has some flexibility, can be helpful and can also help you sleep better.

It can take time to work out how much activity is manageable without making your symptoms worse. Using an activity diary, activity tracker or step counter can be a helpful way to track activity to help to identify and set realistic activity limits. Remember all types of activity can have an impact so pacing applies to thinking, social, emotional and physical activities.

Example of a baseline for an activity:

If you can walk 20 minutes on a ‘good day’ but can only walk for 5 min comfortably on worse days then your baseline is 5 minutes for walking. Try to limit walking time to 5 minutes and see if you can do it more regularly. It can be frustrating to limit the time initially but once your activity is more stable you can start to gradually increase it.

It is important to include enjoyable activity not just things you need to do. You may not be able to do things as you used to initially and might have to experiment with doing things differently to start to get back to things you enjoy.

If you wanted to bake a cake but think it might be too much for you, see if you can do things differently such as starting with a simple recipe, breaking the task down into small chunks, getting some help, taking rest breaks or sitting rather than standing.

You may find it helpful to focus on one activity at a time, limiting distractions that may make concentrating difficult. For example, putting your phone away and sitting in a calm quiet space to read or study.

It is not always possible to pace activities completely so don’t worry if things don’t always go to plan. Sticking to planned amounts of activity as much as possible is good way to start. If you think you have set your baseline too high or too low you can always adjust it. In time as your symptoms improve you can relax the ‘rules’ a bit if there is something important that you want to join in with.

Once you have established a manageable and more stable routine you may wish to start thinking about building up your activity levels.

You may be really keen to build up your physical and mental activities as quickly as possible. Or you may be concerned about increasing activity levels having found it made you feel worse before. It is important to increase things slowly, looking at your overall activity and try not to build everything up at once. Decide on your priorities and goals and try to gradually build up one activity at a time, adding in new activities once things are more stable.

Physical activity is well recognised to be beneficial for health and wellbeing but can be difficult to achieve when you have significant fatigue. Children and young people with symptoms such as fatigue commonly report an increase in symptoms following physical activity. For some this will be after activities of daily living (washing and dressing) while others may struggle with higher intensity activities such as taking part in PE at school.

If you have been unwell and less active for a while, your muscle strength and general fitness will have reduced which will make things harder. Finding a manageable way to maintain and gradually increase physical activity can help you to start to work toward your goals. Our bodies like to move. Try to find a manageable activity that suits you. Take it gently to start with rather than just pushing through symptoms.

Start with a small amount of gentle activity that you would be able to do most days (not just on a good day) without increasing symptoms. Perhaps try gentle stretches, a short walk or an activity such as baking. Give it a go, then reflect if it's the right amount/ type of activity for you. There may be some trial and error working out what is manageable for you.

If however, you have concerns about symptoms such as chest pain, shortness of breath, palpitations or dizziness check with your doctor before starting to increase your activity.

Depending on your symptoms, you may need to adapt activities to find something that works for you. For example, if you suffer with dizziness when standing, you may benefit from starting activities or exercises lying or sitting and gradually progress to upright activities.

Building up your baseline: once you are able to do your chosen activities at your baseline regularly, without a significant increase in symptoms, you can start to gradually build the activity, either by increasing time, frequency or by adding a new activity. You can also increase the intensity, but it is better to build the time or frequency first. Increase by a small amount, just ‘nudging’ up activity levels gradually. Resist pushing through your symptoms.

• Start Low, Go Slow!
• Don't rush back to high intensity activities too quickly
• Build up gradually to allow your body time to adjust.

After increasing activity levels continue at this new baseline until it feels more manageable and doesn’t increase symptoms before increasing again. It may take 1-2 weeks or more until you are ready to increase the amount you are doing again.

Once you are comfortable with lower intensity activities for longer periods, you can start to experiment, gradually increasing the intensity of the activity for short periods; for example, walking faster for a few minutes. Increase by a small amount, build up slowly and stabilise activity before progressing to check the impact and allow your body to adjust.

Don’t forget to look at your overall activity when building up. When other demands are high i.e., the start of school term or exam time, it might not be a good time to increase your physical activity levels. School holidays might be a good time to increase activity levels when there is less pressure from school.

Gradually build up your fitness levels before starting vigorous sport or PE. Once you feel ready to start PE, perhaps begin with warm up sessions, part of the PE lesson or take regular rest breaks in the session. Talk with your teacher first so that they understand you may need support with this.

Your family, friends or school may be able to support you in your activity management and improvement; if you feel you need more specialist support from a physiotherapist or occupational therapist you should discuss this with your doctor.