This section looks at fatigue, sleep disorders and relaxation. It offers practical advice for dealing with tiredness and trouble with sleep, as well as tips on relaxation.
Most of us are familiar with tiredness of the body. But children with an acquired brain injury often also experience a different kind of tiredness.1 ‘Fatigue’ can have an effect on a child’s mind and senses as well as their bodies.2, 3
Perhaps you’ve experienced that feeling of not being able to take anything in when you’re tired. This is one aspect of fatigue.4 It’s been described as “like wading through treacle”, or as if someone is “being weighed down by something.” It’s this tiredness of the mind that medical professionals call cognitive fatigue.
The “cognitive” part simply describes the different processes that go on all the time in the brain.5 Fatigue can leave children feeling irritable and frustrated.4 It can affect concentration and have a big impact on a child’s schooling.6
It’s these very processes that can slow down or seem harder to children experiencing fatigue. Naturally, this has an impact on a child’s everyday life such as:
- Social situations, talking to friends and family
- Keeping up with studies in school or college, or completing tasks in the workplace for young people.7
Does it mean a child with ABI can’t do the things others can?
Fatigue doesn’t necessarily mean someone with an acquired brain injury can’t do things. But it does mean some aspects of everyday life might take a little longer and it will usually mean more regular breaks.
It may well mean a child goes back to school in stages starting part-time at first.8 It may make homework and activities outside school that much more difficult.7
Children and young people may fall asleep soon after their return from school or college.6 Fatigue is not unlike a Formula One car. It can still complete the circuit but not without its regular pit stops to refuel.4
Much like one of these cars, children with acquired brain injury (and those around them) have to think hard about pacing themselves. If they don’t there is the danger they will overdo it and take longer to recuperate.9 We talk more about this below.
The effects of acquired brain injury don’t exist on their own
We know that many of the effects of acquired brain injury are bound up together. Acquired brain injury is best thought of as a set of overlapping difficulties.10
Fatigue is a good example of a difficulty that may have wider effects. Children’s concerns that they can’t concentrate or ‘keep up’ with friends their age may be a source of anxiety to them.
This may be particularly true in school.11 And fatigue may be tangled up with some of the other effects of acquired brain injury.
Children can become more irritable as a result of feeling tired, and they may become frustrated at the feelings of tiredness.4
Fatigue can have a genuine impact on a child’s social life. While their friends get together for sports or social activities, children with an acquired brain injury may simply be too tired to do so.
I wonder if my friends think Charlie just needs a good night’s sleep. But it’s not that simple." A parent's experience
Sadly, fatigue can’t simply be ‘sorted out’ by catching up with sleep. Overtiredness can have an almost contradictory effect in actually making it hard to sleep.
Much like other aspects of brain injury, fatigue affects individual children in remarkably different ways. And much like brain injury as a whole, it’s extraordinarily complex.
What can be done?
There is no one simple way to deal with fatigue. But families and children themselves can do a lot to help themselves.
Much of the battle is in understanding that fatigue is there. While we know that fatigue is one of the effects of acquired brain injury, there isn’t a great deal of knowledge about how we should manage it.
But we can look at fatigue and tiredness in other conditions – such as ‘chronic fatigue syndrome’ to try to understand what might help.
Pacing
It may be difficult to strike a balance between activity and relaxing. Research in chronic fatigue warns about the dangers of a ‘boom and bust’ cycle. This is where a child might push themselves too hard one day, but spends the next day unable to do anything because they’re exhausted.9
The key is in keeping a more consistent, regular level of activity, with room for breaks. If children are anxious about keeping up with classmates in school or being left out of social activities with friends, they might overdo things.
With your child, talk through the things that have made them tired. Talk about why it might be good to hold back on some of these things.12
Occasionally, Michaela will try to do too much – she’s very conscientious about her schoolwork – but she usually pays the price the next day in feeling shattered. The problem of course, is that it ends up being counterproductive in the long run." Parent's experience
Encouraging children to pace themselves and take regular breaks can avoid this kind of difficulty. Try to explain that they’re better off trying to spread their activities over the week.
Rather than getting everything done in a single day, they can get the same amount done in smaller doses. As hard as it sounds, much of this is in asking children to accept their limits. And that they sometimes must say no to things they would like to do.12
It’s also helpful to bear in mind that some activities we carry out use more energy than others.
Some additional tips
(Used with kind permission from Trevor Powell, from his book Head Injury: a Practical Guide).13
- Try to spot the early signs of fatigue and take it easy.
- Do tasks for a set period of time. Spend 30 minutes on something rather than trying to complete it.
- Plan rest times, especially after tiring activities.
- Remember that a meal can sometimes help.
The danger of misunderstanding
Some children who’ve experienced fatigue talk about how frustrating it can be to be misunderstood.14
My teacher seemed to think I had a bad attitude because some days I’d be okay, but on others I just couldn’t keep up as well."
Like many aspects of acquired brain injury – often referred to as the ‘hidden disability’15 – fatigue isn’t an easy thing to describe to others.
If a child had broken their leg it would be clear to those around them because their leg would be in plaster. But parents talk about their deep frustration that brain injury isn’t as easy to ‘get’ to relatives, neighbours and friends.16
It is particularly important that your child’s teacher(s), tutor or employer understands fatigue and the effects it has on them. The classroom can be particularly frustrating for children experiencing fatigue if their teachers aren’t informed.17 The ‘Talking with teachers about acquired brain injury’ section may help you explain brain injury to others.
The importance of relaxation
All of us know someone for whom relaxation comes very easily ... while for others, it can take genuine effort.
For some, it requires a conscious decision to relax. It might seem strange to say it but relaxation is a skill.18 Children are no different to adults in this respect.
As we’ve described, those with acquired brain injury can be tempted to push themselves too hard, ignoring the signals their bodies are giving them that they’re tired. So finding the time to relax is extremely important. Not doing so may be frustrating and counterproductive in the long run.19
Try to encourage your child to think and talk about what relaxing means to them. The word ‘relax’ is frequently associated with others like ‘quiet’ and ‘solitude’.
Some children find it easier to relax in an environment with few distractions or noise. And it can be helpful to talk to your child about the advantages of having a quiet place to relax in the home. This might be particularly appropriate for children who are sensitive to noise or those who are easily distracted.
If they’ve been at school, or in therapy sessions, children may have been stimulated over the course of the day and may benefit from some time out. Putting some thought into relaxation may help children with their stresses and anxiety.20
It may also help other members of the family with their own stresses and strains.
This dedicated section goes through some practical relaxation tips, step by step. But what follows are a few other examples of relaxation techniques:
- Yoga – this is made up of some slow-moving exercises and breathing techniques. It’s supposed to build up muscles, help people feel healthy and relieve stress.
- Tai-chi – this is a Chinese system of even slower movements. Lots of people find this helps them to relax.
- Pilates – this is another exercise system. Sometimes, special equipment is used.
Sleep
Our thanks to the MS Society for its help with our material on sleep hygiene and nutrition.
What is sleep hygiene? 21
This curious phrase describes some recognised ways of getting a good night’s sleep.
We know that adults with traumatic brain injury commonly have difficulties with sleep, and it’s thought children may experience the same problems. These might include getting off to sleep, disturbed sleep or waking up properly in the morning. 22
Not getting enough sleep may make the effects of fatigue seem worse. “Thinking straight” may be harder and difficulties with behaviour may be more exaggerated.
And although it sounds odd, being tired can make it even harder to get off to sleep.23 So sleep hygiene is very much about trying to break that cycle.24
What follows is a guide to sleep hygiene. It’s unlikely to solve all of your child’s problems in one go, but it can certainly help.
We know that establishing a routine can be very beneficial for children with acquired brain injury.25
- Try not to let your child overdo it during the day. It might sound like it doesn’t make sense, but being too tired can actually make it more difficult to sleep.
- Try not to allow too much sleep. Sometimes napping can be better than an extended sleep and lie-in.
- Try to keep regular hours. Get your child to bed each night and get them up around the same time each day, if possible.
- Try to make their bed and your bedroom somewhere they go only when they want to sleep. They should try to avoid watching TV or playing computer games in bed.
Before bed
Avoid sugary drinks such as hot chocolate and try milk instead. If they’ve been doing any kind of exercise or physical exertion, try to encourage them to take time to wind down before bed.
Avoid homework or any ‘high energy activity’ that’s likely to get the cogs whirring before bed.
If they have anything they need to do, or something that’s bothering them, encourage them to write a list for the next day or talk it through.
This might help prevent it from troubling them during the night.
Some children find taking a bath helps, while others might like to take some time to read.
Nutrition
The food and drink children consume can be an important part of dealing with fatigue. These things are the fuel for our bodies and minds, after all.
If we consider some of the food and drinks that are high in sugar:
- Chocolate
- Fizzy drinks
- Sweets and cakes
Most parents will be familiar with the ‘sugar rush’ that accompanies these foods. It’s the short-term boost we get from sugar.
While this kind of short-term fix might seem helpful for children experiencing fatigue, it is unhelpful in the long-term. The reason for this is that these foods give children a higher blood sugar level at first, but it quickly drops away, leaving them feeling more tired.
On top of this, of course, is the fact that foods high in sugar are unhealthy.
What should children eat and drink?
Perhaps it’s no surprise, but a healthy, balanced diet is the best approach. Try to give them as many fruits and vegetables as possible.
And just as high sugar foods give people that short-term boost, there are a number of foods that provide a slower, more long-term release:
- Milk
- Fresh fruit
- Yoghurt
- Multigrain bread
Eating regularly also helps. Rather than skipping breakfast, try to encourage your child to eat at similar times each day.
Drinking water can help avoid headaches. It can also help with tiredness and improve concentration.
Making time for friends and family
Some children may find time with their friends and family helps them take a break. It’s important for all children to have time with others their own age.
It isn’t always easy to make time for friends and family, but it can be of great benefit to children.19
Managing fatigue with the Spoonie Kids resource
The Spoonie Kids resource was developed by Joanna Hunt, specialist occupational therapist at The Children’s Trust. The Spoonies are a group of children who all live with fatigue, limiting the amount of energy they have.
The resource helps professionals, and parents, work with the child to understand how they can manage their fatigue so they are better able to participate in activities, but without pushing themselves too far.
Seemingly simple activities such as getting dressed or brushing teeth can take a lot of energy after an acquired brain injury. In spoon theory, a spoon represents an amount of energy. Spoonies only have a certain number of spoons per day, and have to be careful not to use more than they have, otherwise they will crash. Different activities take a different number of spoons.
The Spoonie Kids resource can be downloaded here and you can learn more on www.spooniekids.co.uk. If you are a professional wanting more information, please contact Joanna directly by email and she can supply the Spoonie Kids presentation and video.
