Unravelling the mystery of fatigue

In this special feature as part of our Brain Drain: Wake up to fatigue! campaign, Occupational Therapy Clinical Specialist Donna Malley writes about why fatigue occurs, and what we can do to help. 

How many of you reading this blog can relate to the following statements?

• It’s like my brain just shuts down…I can’t communicate or think any more
• I try to sleep but my head just whirs around, or I do sleep but don’t wake up feeling refreshed
• Friends think I’m lazy or not motivated as I let them down at the last minute, or have to leave early

Fatigue affects many people at some point in time, but it’s not always understood as a significant consequence of brain injury. This type of fatigue feels completely different; more intense, longer lasting, and doesn’t necessarily seem to relate to what we have just done. And it doesn’t seem to go away after rest either… so what’s going on? Why does fatigue occur? And what can we do about it?

Our brains control everything we do, what we think and feel, and the pace at which this happens. After a brain injury, it seems as if more physical and mental energy is needed for daily life and it feels as if this energy drains far more quickly than before. It’s like having lots of apps open at once on a smartphone; things slow down and the battery drains really quickly until ‘the computer says no’! This is frustrating, can feel unpredictable and difficult to explain. Fatigue can impact work, family and social life, as we may struggle to keep up with conversations, feel more irritable, find it hard to make decisions and keep cancelling plans as we feel too tired. In fact it seems to make other consequences of the injury even worse!

Despite physical and mental fatigue being so commonly reported, scientists are uncertain exactly what fatigue is and why it occurs. They do agree that many different factors interact to contribute to each individual’s experience of fatigue; these can include physiological, cognitive, physical, emotional, personal and social factors. Here at The Oliver Zangwill Centre for Neuropsychological Rehabilitation, I have found it takes a lot of detective work to figure these out for each person, what particular activities or situations may be triggers, and what combination of management strategies are likely to help each individual.

There are things that, in combination, can help and information is available on the Headway website, for example this article on coping with fatigue.

However, it’s not easy to use these strategies in our daily lives consistently. A healthy diet, exercise and getting a good night’s sleep are common sense, but can be difficult to implement after brain injury for a variety of reasons. Changes to mood and emotions are not easy to manage without support from people who understand, such as Clinical Neuropsychologists. Strategies to compensate for memory slips may seem logical, but really hard to action in the moment. And pacing – an easy thing to say, but it’s not as simple as having a break every few minutes!

There is no quick fix or magic pill to take, although scientists are looking, so do speak to your Doctor about whether medication may help. There may be other medical conditions affecting your energy levels to take into account. Working with an occupational therapist is a good idea, as they can work with you to find out what factors are relevant for you, how to make activities take less effort, and manage the environment to help you process information more effectively so you can participate in the activities you value most. Sometimes fatigue improves, it may even go away, but some people may need to be more consciously aware of their energy levels on a day to day basis. Sharing experiences is a good place to start as it can feel so confusing. There are some great blogs from people with personal experience on the internet and social media, although I would recommend management advice is discussed with your therapist or GP as each person is different. So do “wake up to fatigue”; it’s real, it’s common and it isn’t yet fully understood, but together, through sharing experiences with others, we can learn how to make the most of the energy we have, and live our lives more fully.