What is the problem?
Fatigue affects up to 60% of adults with CP, and can dominate how we live our daily lives.
It’s difficult to explain fatigue to family and friends if they’ve never experienced it. They need to understand that fatigue is different from tiredness – it is not just about getting more sleep. We may have to use 3-5 times as much energy to perform the same tasks because of the way we move, our muscle control and the concentration we need to exert.
Fatigue is different for everybody, and changes day to day – the unpredictability is also frustrating. It is also important to understand our particular fatigue, and whether it is masking other medical causes of fatigue such as diabetes, heart disease, thyroid disease and sleep apnoea. Speak to your GP because a simple blood test can rule these out.
What is Tiredness?
This can be resolved with rest and occurs following over-exertion or sleep deprivation, and lasts a short period of time.
What is Fatigue?
- It is associated with a neurological condition that is different from normal tiredness and not always related to activity and it takes a longer time to recover from it.
- In people with a neurological condition, it can often stop them doing what they want to do and going where they want to go and can impact work and social life.
- People describe feeling exhausted, tired, weak and lacking in energy.
- Muscle aches & cramps
- Problems with concentration
- Sleepiness • Irritability
- Slowness of movement
Fatigue is thought of in two ways.
Primary fatigue – directly related to your neurology and because your nervous system has to work harder to send messages from your brain to your body. There is very little we can do about this.
Secondary Fatigue – not caused by the condition but by other factors affected by your condition. Here is where we have a lot more control.
- Sleep difficulties – can be falling asleep, staying asleep or getting the right kind of sleep. Increasing the quantity and quality of your sleep can really help when trying to manage fatigue.
- Anxiety, stress & depression – low mood can make you feel tired and lethargic, however feeling fatigued can also increase the feelings of low mood. Stress can make anyone tired and living with CP can also be stressful, creating a vicious cycle. It is important to seek support to develop strategies to support your mental health.
- Pain and spasms – can affect quality of your sleep and also your motivation to take part in physical activities leaving you with less energy and ability to cope with the fatigue. It is important to think about what you can do to manage and reduce your levels of pain.
- Physical deconditioning – the increased effort needed to carry out everyday activities can result in greater fatigue. Therefore, trying to maintain your cardiovascular fitness and muscle strength can support this.
- Nutrition and hydration – poor diet and dehydration can increase feelings of fatigue.
- Medications – drowsiness is a common side effect of many medications used to treat adults with CP If you notice this, you may want to talk to your doctor about other medication you could take.
- Other medical conditions – a simple blood test can show if there are other issues contributing to fatigue including thyroid function, vitamin and hormone deficiencies, and anaemia.
How do we manage it?
Energy conservation techniques:
It is important to learn strategies to manage your energy. You need to begin to understand how much energy realistically you have in a day and how to prioritise the tasks you want to achieve.
It is important to be guided by your own patterns of fatigue, they will be unique to you!
Here are some things to think about when planning your day.
- Start to understand your energy patterns – if you have more energy in the morning plan more tiring tasks first. Keeping a fatigue diary can help you to start to identify these patterns (see image)
- Prioritise tasks – you might not have the energy to do everything you want to in one day. Feel confident in choosing the most important things and become more comfortable in delegating and asking for help.
- Schedule rest breaks – don’t wait till you are too tired to have a rest
- Before starting an activity it’s important to get organised – gather and organise all items before an activity e.g. preparing a meal.
- Think about your posture – are you sitting in the most comfortable and supported position? e.g. sit rather than stand, think about whether you have good seating support in your wheelchair or bed. The better you are supported, the less energy you will use.
- Think about the equipment that can help – use equipment to make activities easier. e.g. a grab hand. and consider the assistive technology you could use to make your life easier especially around mobility.
- Think about your surroundings, temperature and lighting can make your fatigue worse. Start to become more aware of your physical environment – how many times you have to walk up/down the stairs.
It is important to learn strategies to manage your energy. You need to begin to understand how much energy realistically you have in a day and how to prioritise the tasks you want to achieve.
Fitness & Exercises:
It might feel counterintuitive but staying fit and active is one of the best ways to combat fatigue, and here is why:
- Becoming more active can help to improve your general health and endurance and therefore support your energy levels
- Being more active improves the working of your heart and lungs , builds muscle strength which can help with fatigue
- One of the best side effects of exercise is the release of feel-good hormones endorphins and encephalins and the boost of energy you get when you exercise.
- Being more active helps you feel more sociable and gives you more energy to participate in the activities you enjoy with the people you want to be with. This in turn often increases your motivation and the energy levels you need to join in.
Nutrition and Hydration:
Your diet and fluid intake can have a direct impact on your energy levels
- Eating small meals more frequently through the day may steady your blood sugar level.
- Think about portion size and balanced diet to improve your nutrition. Think about the types of food that you eat and which ones give you energy for longer.
- Keep hydrated, many of us do not drink enough. It is recommended that adults drink up to 2 litres of fluid every day.
- Some people with Cerebral Palsy may find it hard to get their nutrition right for their energy needs. Problems with chewing, swallowing, reflux and absorption of nutrients and minerals can mean a person doesn’t take in what they need. A dietician will help you to understand how to best manage your diet so that you are getting the right amount of nutrition from your food without compromising your energy levels.
Rest and Sleep:
The amount of rest you get, and the quality of your sleep will have a direct impact on your levels of energy.
- Directly tackle the reason that you might not be having good sleep e.g pain, positioning.
- Employ good sleep hygiene.
- Employ the pacing techniques that help you best manage your day.
- Think about your energy consumption over a week.
- Consider what activities you want to take part in and how best to prepare for them. For some it might be about clearing your diary before the event to make sure that your energy levels are optimum. For others it will be important to have ample recovery time and for some things you will need both. Learn what works for you.
Resources
Explaining the spoon theory to someone with a chronic illness.
https://www.youtube.com/watch?v=GDio-hS-M54
Better Ways to Cope With Fatigue – Headway
https://www.youtube.com/watch?v=MhcTCIl-RDY
Scarlett Murray is a 22 year-old mother of one, and a talented writer who blogs about her experiences of living with Cerebral Palsy. Her form of CP is left-sided hemiphlegia. She tells us her story.
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Rio Boothe is 19, studying Sport Business at Liverpool John Moores University. He is also an aspiring Paralympian. He tells us his story.
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Clive Gilbert is a leading policy expert on assistive technology for disabled people, drawing in part, on his own experiences living with Cerebral Palsy. He tells us his story.
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