People living with Cerebral Palsy (CP) can experience fatigue to a greater degree than others. This can lead to some challenges in everyday life. Luckily, there are several things you can do to minimize your experience of fatigue.
What exactly is fatigue? How is it experienced? And how can you create a good balance between activities and energy?
Fatigue in people with CP is a relatively new field of research. As a result, the evidence-based methods for managing fatigue are currently limited.
The information in this article is based on existing literature from the field of fatigue research and experience from clinical work.
It is primarily aimed towards adults with CP, but it can provide inspiration for people of all ages; children with CP also experience fatigue more frequently than children without CP.
What is fatigue?
The term fatigue is often used in CP research. Fatigue can arise because people with CP may have to use more physical and mental resources to perform activities of daily living. This can lead to a reduced capacity for physical and/or mental activity.
There is evidence that adults with CP experience fatigue more frequently than the general population. Fatigue can have negative effects on the individual’s quality of life and general health. Many people feel they have to limit their activity level and spend more time planning their day in order to manage their fatigue.
Research has also shown that adults with CP become tired more quickly and that they are generally less physically active than their typically developed peers. Fatigue can be taxing and can affect how much people with CP do in their daily activities.
How is fatigue experienced and expressed?
Fatigue is experienced differently from person to person. Some people experience it mentally, which may cause difficulty concentrating and remembering things. Performing tasks and making decisions can become overwhelming. Others may have a physical experience, feeling that their muscles are weak or are not reacting as usual.
Regardless of whether fatigue manifests physically, cognitively, or both, it can affect your mood, and some people can feel sad or irritable. You may blame yourself, feel guilty, lazy, or that you ‘should pull yourself together’, when the fatigue sets in. The symptoms can be present at the same time of day, or they may vary depending on the activity you are doing.
Because fatigue is not usually visible, it can be difficult for others to understand. Many people with CP feel misunderstood because of fatigue, and many have experienced that their fatigue is mistaken for laziness.
Why do many people with CP experience fatigue?
We don’t yet know why many people with CP experience frequent fatigue. Studies suggest that the prevalence among adults with CP is between 30-60 %. For comparison, 10-30 % of adolescents and adults without brain afflictions experience fatigue.
Fatigue is also a burden for people with other neurological challenges. Many people that have had a brain injury later in life experience a greater degree of fatigue. They typically describe the fatigue after brain injury as having a different quality and intensity than the fatigue they experienced before the injury.
Initially, fatigue in people with CP was viewed solely from the perspective of physical activity and the muscle tiredness that occurs during physical activity. We now know that many other factors are involved. Cognitive and mental functions, including concentration and overall focus, can also become exhausted. This may be because people with CP have to use more cognitive and mental resources than other people to perform their daily activities.
How can I reduce my fatigue?
It is not dangerous to feel fatigued, but it can be uncomfortable. It can be a good idea to avoid feeling overwhelmed or overloaded for longer periods of time. You may not be able to eliminate your fatigue entirely, but it can become less of a burden.
You can reduce your fatigue in different ways. Here are three strategies you can try:
The most widespread approach to treating fatigue in people with acquired brain injuries in Denmark is called ‘energy management’. Briefly, this is an evidence-based approach you can use to learn about and manage your fatigue. This can involve registering your energy levels and planning periods of rest in between the day’s activities.
Many factors may contribute to your fatigue, including sleep disturbances, depression, pain, medication, and epilepsy. As part of an energy management program, you will typically identify factors that contribute to your fatigue and learn how to target them with an intervention. Energy management is usually part of a more comprehensive and interdisciplinary intervention.
You can use a calendar or weekly schedule to see patterns in your fatigue:
- Is it most pronounced at specific times of the day or week?
- Does it typically arise after certain activities or the day after a particular activity?
- Which activities give you energy, and which activities drain your energy?
The goal is to find out how you can structure your day to recharge your energy for the most important activities. You can score your experience of fatigue associated with an activity on a scale from 1-10, where 1 is ‘no fatigue’ and 10 is ‘exhausted’.
You can also record your level of fatigue at specific times of day with red, yellow, and green pens or markers. The frequency with which you should aim to document your fatigue will differ from person to person.
The more frequently you register your level of fatigue, the more nuanced your overview will be. However, the process of documenting this information may be tiring. For this reason, it is an individual decision - which can be made in cooperation with a health professional.
When you have completed this documentation, the next step is to prioritize, plan, and structure your activities. This can also be done using a calendar or weekly schedule.
Additional planning and structure can be tedious in the short term but can give you more energy and stamina in your everyday life. Distributing the activities that demand the most energy throughout the week will ensure that they don’t pile up, and that you have energy to do the most important activities.
You can also plan breaks (both relaxing and active) depending on your needs. A break can be a change in activity, alternating between mentally and physically demanding activities. In this way, you can plan either an active or relaxing break depending on the type of activity you are engaged in. The activities that feel mentally and/or physically demanding are not the same for everyone and must also be evaluated individually.
It is important to note that change takes time. It can take several weeks to create a map of your fatigue levels, and it can take a long time to make changes to your schedule of activities. You may need to make small adjustments on an ongoing basis, and you may need to try different approaches so you can find the right strategy. Make the changes systematically, so it is clear what works and what does not work. If you try out too many new things at the same time, it can be difficult to know what is or is not working.
We know from scientific studies and practical experience that physical activity and exercise can, in some cases, improve both mood and the mental experience of fatigue. For most people, it feels natural to rest when you are tired. However, this is not always the most appropriate strategy because rest does not necessarily mitigate fatigue. In some cases, inactivity can lead to more fatigue. For some people, physical activity may be a better strategy.
Physical activity can be incorporated into existing activities. It can serve as a break from another activity, or it can replace a break or rest period. You can also integrate physical activity into transportation, cleaning, or personal care activities. Another option is to try endurance training with a physical therapist (possibly free of charge).
The scientific literature on interventions that can mitigate fatigue is limited. The few small studies that have been performed in the field of neurology indicate that endurance training, i.e., training that increases your heart rate/pulse, can reduce fatigue. This type of exercise should be performed at moderate to high intensity.
A physical therapist can guide you to the right intensity and frequency to improve your fitness. It will likely take some time (up to several months) before you can feel the effects of endurance training. In the beginning, it may feel like the intervention takes more energy than it provides.
Physical activity can also be performed in a social context. This can be both fun and motivating. Even practical chores like cleaning or shopping count towards physical activity.
Involving your network
For some people, it can be a good idea to share your experience of fatigue with relatives, friends, or a close colleague. This can give everyone a better understanding of your situation. Start a conversation about how you can work together to make changes that give you more energy for the activities that are important to you.
Changes in your environment may also help. Finding a room to work in without too many distractions, so you can take an active break – take a walk and/or get some fresh air - or switch between activities that are physically and mentally demanding.