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Coping with fatigue

Although there is no cure for fatigue, some of the strategies below can help you manage the side-effects of brain tumour-related fatigue. 

Many people's fatigue begins to improve within six months to a year after treatment. However, some people experience it for longer and the effects of fatigue can be debilitating no matter how long you experience it.

Up to 80% of people think there is nothing that can be done for tumour-related fatigue and don't mention it to their healthcare team. 

However, if fatigue is affecting your quality of life, speaking to your healthcare team can result in treatment for some of the factors that contribute to fatigue - for example, pain, anxiety or depression. They may also be able to refer you to other specialists that can help such as counsellors, support groups or complementary therapists.

    Top tips for coping with fatigue

    Fatigue can be part of a vicious cycle caused by the side-effects of brain tumours and their treatments. Many of the symptoms of fatigue can make you feel more exhausted, making the fatigue worse and, consequently, increasing the impact of those symptoms.

    However, if you can work out what triggers your fatigued, you may be able to find a way to break the cycle.

    Many people have found the 'three P's' helpful.

    Prioritising

    Write a list of activities that you do regularly and assign priorities to them, with number one being the most important to you.

    If you find this tricky, you can split the activities into four categories:

    • Things I have to do.
    • Things I want to do.
    • Things someone else can do for me.
    • Things that don't need to be done or don't need to be done right now.

    Planning

    Keeping a diary of your activities and when you feel fatigued can help you identify possible triggers and patterns in your energy levels. You can use this information, alongside your list of priorities, to plan your day.

    Setting yourself goals can give you a sense of purpose and achieving your goals can be a real boost to your recovery. However, you should try not to be too ambitious and set realistic goals.

    Accept that sometimes your fatigue will be too overwhelming to do everything on your action plan and remember to celebrate your achievements.

    Pacing

    Where possible, you should try to break down your tasks into smaller, manageable chunks. You can do this using the same categories used in the prioritising section above. 

    Planning short rest breaks throughout the day can help minimise the impact of fatigue. As a guide, you should rest for ten minutes out of every hour, but try not to sleep during these rests - as this could affect your sleeping pattern.

    Keeping 20-30% of your energy in reserve can prevent you from burning out. "Spending" it wisely by shopping online or asking others to help you out can be a great way to conserve you energy.

    Other ways of coping with fatigue

    Treat specific causes

    Fatigue can be caused by a wide range of factors, including your treatment, your medication, your diet and your mental health. Speaking to your healthcare team may help you discover what is causing your fatigue and take steps to lessen the impact. 

    It's important to remember that you should never change your medication or treatment without speaking to your healthcare team first.

      Stay physically active

      If you're living with a brain tumour, gentle to moderate exercise can help:

      • increase your energy levels
      • reduce pain
      • improve the quality of sleep
      • stimulate your appetite
      • boost your sense of well-being.

      After the exercise, you should feel energised, not wiped out. So, it's important that you don't overdo it. Finding a type and level of exercise you can manage and enjoy doing most days of the week can help you find the right balance.

        Keep your mind active

        Cognitive fatigue can be part of physical fatigue. Puzzles or activities, such as arts and crafts, can help stimulate your mind and leave you feeling mentally refreshed.

          Have a regular sleep pattern

          Keeping to a regular sleep routine can play a big part in lessening the impact of fatigue. To encourage a regular sleep pattern you should try to:

          • avoid sleeping during the day
          • not drinking caffeine and alcohol close to bedtime
          • have your bedroom at a comfortable temperature
          • stop using back-lit devices or screens one to two hours before going to bed.

          If you aren't able to get to sleep within 30 minutes of going to bed, you should go to another room and read or listen to music until you feel sleepy. Then repeat your getting ready for bed routine again.

          Eat like a marathon runner!

          Your diet is important and plays a vital part in maintaining your energy levels. 

          Pasta, fruit and whole-grain breads provide you with long-term energy. Eating little and often will help keep your energy levels stable, particularly if combined with vegetables, dairy and a small amount of protein.

          Using frozen vegetables or pre-cut foods and sitting down while preparing meals can help conserve your energy. Making large amounts and then freezing leftovers for future meals can be a great time and energy saver. 

            Manage stress and anxiety

            Stress and anxiety use up lots of energy. By learning to recognise your triggers and how your body responds to them, you can help lessen the effects of fatigue.

            There are many strategies to help cope with anxiety, including mindfulness, breathing exercises, relaxation aids, colouring books, gentle music and herbal pillows. Simply talking about your worries has been shown to help reduce fatigue.

            Your GP can provide information and, if necessary, refer you for counselling.

              Find reliable information

              Making sure you have access to reliable information about your diagnosis and treatment can mean you're better equipped to cope with fatigue.

                How can I explain my fatigue to others?

                Analogies about conserving energy can be useful when explaining how you feel:

                • A rechargeable battery, which runs down more quickly than before you were ill.
                • An A4-sized envelope. Before you had a brain tumour, you packed all your activities into the envelope and it closed easily. Now you only have an A5-sized envelope, so you cannot fit in all the activities you used to do.
                • A car with a broken petrol gauge. You know there is 'fuel' in there, but don't know how much is left, so you need to be more cautious and think about how you could refill it.

                We have developed a range of employment resources which may help you when explaining the effects of your brain tumour to your employer or when you are looking for work.

                Get help, advice and support

                If you or a loved one has been diagnosed with a brain tumour, you can always contact our Support and Information team. We offer a wide range of support, from advice over the phone to events where you can meet and share experiences with others.

                If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:

                Information and Support line

                0808 800 0004 (free from landlines and mobiles)

                support@thebraintumourcharity.org

                Phone lines open Mon-Fri, 09:00-17:00

                You can also join our active online community on Facebook - find out more about our groups.

                Why Prioritising, Planning & Pacing are so important

                Angela explains the importance of the 3 Ps when you're living with a brain tumour: Prioritising, Planning & Pacing

                Alfie's story

                Three years ago, Alfie had a grade 1 pilocytic astrocytoma completely removed.  Now he shares his experiences with fatigue and how he manages day to day.