Managing fatigue when you are living with a terminal illness
Fatigue is extreme tiredness. It may, at times, have a big impact on your life. This page has information about the things you can do to manage fatigue – and the support you can get that may make fatigue less overwhelming.
On this page:
What is fatigue?
Fatigue is a feeling of extreme tiredness, weakness or lack of energy. For some people, it can also mean finding it hard to remember things or concentrate. It's different to normal tiredness. And it does not go away after rest or sleep.
Speak to your nurse or doctor if you think you have fatigue. They can find out what's causing it and can support you with ways to manage it.
Read about how you can get support for fatigue.
Living with fatigue
People sometimes say that having fatigue is like being 'wiped out', 'hitting a brick wall' or a feeling of 'sudden crashing tiredness'. It can affect all areas of your life.
It may affect you in these ways:
- difficulty sleeping at night
- problems with your short-term memory
- feeling like your arms or legs are heavy
- difficulty with daily activities like washing and dressing
- difficulty concentrating and making decisions
- loss of interest in sex
- lack of motivation
- not enjoying things you usually do which could include meeting friends or work.
You may find having fatigue is frustrating and upsetting, especially if it's stopping you from doing things that are important to you. You may also feel guilty if it means you cannot do as much as you did before.
But it's very important to remember that having fatigue is not your fault.
At first, you feel regret, guilt and frustration that you can’t do as much as you used to be able to. But you can accept it and find a new starting point.
What causes fatigue?
Some of the things that can cause fatigue can be treated, or they may only last for a short time, including:
- treatments like chemotherapy, radiotherapy and surgery
- eating less because you've lost your appetite
- not being as active as before
- side effects of treatments or illness, such as low red blood cell count (anaemia)
- some prescribed medications like corticosteroids and opioids
- anxiety and depression.
If you think you have fatigue, speak to your doctor or nurse. They can look into what's causing it and support you with ways to treat it.
Explaining fatigue to other people
You might find it hard to explain to other people what this type of overwhelming tiredness is like. And you might feel guilty about feeling so tired − and that you cannot do the things you want to do.
But because fatigue is 'invisible', people may not know that you have it unless you tell them. If you can explain to others how you're feeling, it can help them understand and think about how they can support you.
It's a good idea to think about who you want to share this with. You might want to tell people who can give you specific practical support (for example, your employer). Or you might want to share how you're feeling with a person, or people, who are important to you. People you might want to share this with could then include:
- family (including children)
- friends
- health professionals
- colleagues
- your employer.
You can explain to them that you do not have as much energy now as you used to. And that you need to use the energy you have for the things that are most important to you.
It can also be an opportunity to ask for help if there are things you're finding more difficult. This could be things like shopping, driving or housework.
Fatigue diary and planner
Keeping a diary of your energy levels can help you spot if you're more tired at a particular time of the day, or after doing certain activities. It's called a fatigue diary. You can share it with your doctor or nurse. It can be helpful for them to see how fatigue is affecting you.
You can also look back at your fatigue diary and then use this information to help you plan what you do in a week, using a fatigue planner. You might want to share the fatigue planner with people important to you so they can support you with your activities.
Your GP or hospital doctor
Your GP or hospital doctor can look into what's causing the fatigue, prescribe medicines that may help, and recommend ways to manage it.
Physiotherapists
Physiotherapists can help you plan your daily activities in a way that saves your energy. If you want to do more activity, physiotherapists can show you ways to exercise safely. They can also help you manage other symptoms including breathlessness.
Occupational therapists
Occupational therapists (OTs) can help you plan activities so you can still do the things that are most important to you. They can recommend techniques, equipment or changes to your home like handrails. These changes can make it easier for you to carry on with daily life.
Hospices
If you're living at home, you can still have treatment and support in a hospice. At many hospices, you can attend their day services. This is a part of the hospice for people who are not staying there.
Healthcare professionals at the hospice run sessions to help you manage your symptoms. Some hospices run group sessions where you can learn about how to manage fatigue, anxiety and breathlessness.
You may want to ask your doctor if there are any sessions at your local hospice you can go along to. Hospices also have wards where you can stay for a longer period and get extra support to manage your symptoms.
Clinical nurse specialists
Clinical nurse specialists are experts in particular illnesses such as cancer and heart failure. They can give advice on how to manage fatigue, and give you information about support groups and classes in your local area.
Palliative care nurses
Palliative care nurses are part of a hospice or hospital team. They are specialists in managing symptoms and supporting people with a terminal illness. Palliative care nurses work in hospices and hospitals and can also visit you at home.
Social workers
Social workers can help you with benefits and getting carers if you're entitled to support at home. They can also arrange respite care for friends or family members who are looking after you.
See our page with information about benefits when you're ill.
Social prescribers
Your GP may refer you to a social prescribing link worker. This is a professional who can put you in touch with community-based support including services that can help with practical, emotional or social needs you may have. This could include welfare or benefits advice or services offering emotional or social support in your community.
Other professionals
You might find it helpful to talk to other professionals such as counsellors, psychologists, music and arts therapists, and spiritual advisors. They are trained to talk to you about what’s most important to you and support you with any worries, fears and concerns. They can sometimes be accessed through a hospice. Or you can ask your doctor about what services are available in your area.
Speaking to other people who have fatigue and know what it feels like is really helpful. When I come to the gym at the hospice, I don’t need to explain what it’s like to the other people there. They get it.
What helps with fatigue?
There are ways of doing things that can help you manage fatigue. It can help if you start thinking differently about how you do things and plan activities to make the most of your energy.
You may find it helps to imagine that all the energy you have is stored in a battery. The battery only has a set amount of charge before it needs to be recharged. In the same way, you have a set amount of energy to do all the things you want to do. So, give yourself time to rest and recharge when you need to.
Making the most of the energy you have
The five Ps – prioritising, planning ahead, pacing yourself, positioning and permission – are a way of making the most of the energy you have.
Prioritising
If you do not have enough energy to do the things you used to do, think about what matters most to you and prioritise these things.
What's most important is different for everyone. For some people it will be spending time with others like friends, family or children. For other people it may be very important to be able to work, or get outside into nature, or watch a sport, or keep up with a hobby.
You could start by making a list of the things that you want to do. Then highlight the ones that matter most. Try to include things that you enjoy and can help you relax as well as work or things you need to do.
Planning ahead
Plan ahead by thinking about what you want to do in a week. Then spread activities across the week. Try to avoid having two busy days together. If you have a very busy day, plan a rest for the day after. And think about timing your activities in a day − so that you can rest before starting on something else.
Some people like to use a diary to plan ahead. Or you might want to note it on your phone or phone calendar. And having something to look back on can help you to plan activities for the times when you seem to have the most energy.
See more information about having a fatigue diary and planner.
Pacing yourself
If you're not used to doing things more slowly, you may find this difficult. But try to take the time you need and pace yourself. It's also OK to ask for help if you need to. It's important to try to listen to your body and understand your own limits.
Positioning
Doing things in a different way or in a different position, can save you energy. For example, sitting down to chop vegetables or sort out the washing uses less energy than doing them standing up. So, think about whether there are easier ways to do some things.
Permission
Give yourself permission to do things differently. This might mean asking for help with things you used to do by yourself. Or it might mean taking rests and having a nap.
Even if you plan ahead, you might not always have enough energy to do the things you planned to do. So, be kind to yourself and try not to worry if you do not get through what you wanted to that day.
I have a nap in the afternoon. I know that I’ll have around 45 minutes sleep after lunch and it helps. If I’ve got a lot on, I might have to miss the nap and then I’ll be more tired in the evening. I had to give myself permission to do this and not feel guilty about it.
Physical activity
Try to stay as active as you can without overdoing it. This might seem like an odd thing to say when it takes energy to do exercise, but being active can give you more energy. And using your muscles can help to keep them stronger which can help you to maintain your independence.
These are things to be aware of if you're doing physical activity:
- You should still be able to talk in short phrases while you exercise. Slow down until you recover your breath if you find it too difficult to talk.
- Controlled breathing exercises are a way to manage your breathing while you exercise. Find more information about breathlessness and controlled breathing exercises.
Physical activity could be things like walking, gardening or swimming. But simply moving your arms and legs in bed or in a chair can also be helpful. If possible, try to do something that you enjoy. A physiotherapist can help you find the best activities for you.
In some areas of the UK, doctors can prescribe exercises classes. They might be held at a local gym or at the hospital. Some hospices also run sessions where you can use the gym. Ask your doctor or physiotherapist if there are exercise classes you can join in your area.
See more information about keeping active.
Sleep
Getting a good night's sleep can help to boost your energy. But we know it can be difficult to get enough sleep when you're living with a terminal illness. It could be because you're worried, you cannot do as much in the day, or because you have symptoms that are making it more difficult to sleep.
You may find that these tips can help you to sleep better:
During the day
- If you can do some physical activity during the day, this can help you to sleep at night. Or just getting outside for a while in natural light and fresh air may help.
- Following a routine, for example getting up and going to bed at the same time every day, may improve your sleep at night.
Before bed
- Try to do things that help you relax before bed. Listening to music or trying relaxation techniques such as deep breathing might help. Some people find having a bath before bed helps them get to sleep too.
- Doing the same routine each night can help you feel ready for sleep.
- Avoid caffeine after midday and nicotine and alcohol in the evening.
In bed
- If possible, go to bed in a room that's quiet, calm and at a comfortable temperature.
- If it's too noisy, you may want to try earplugs.
- Try not to use electronic devices such as tablets and smartphones in bed.
If being worried or having too many thoughts is making it harder to sleep, it can help to keep a pen and paper beside your bed. Write down the things you're thinking or worrying about before you try to go to sleep, or you can write them down if you wake up in the night. Just writing worries down can help calm your mind and you may be able to deal with some things in the morning.
Find more support for sleeping well from the NHS.
Eating well
Food is fuel for your body and helps to maintain energy levels. But having an illness can affect your appetite. If you're finding it difficult to eat, speak to your doctor or nurse. They can refer you to a dietitian.
If you find eating tiring, try having smaller portions and snacks throughout the day. Try to make the most of times when you feel hungry, or when your appetite is best. And if your taste changes, try different foods and eat the food that taste best to you now.
You might find you do not have the energy to prepare meals. If there's a friend or family member who you can ask to help, that could be a way that they can support you. You can also ask your doctor or social worker about getting healthy meals delivered to your home.
See more information about eating well when you're ill.
Relaxing
Finding ways to relax can help you to manage fatigue. Try to find time to relax every day.
You might find it helps to:
- do breathing exercises
- listen to music or an audiobook
- spend time outside
- have a bath
- try meditating.
People can find meditation apps like Headspace or Calm helpful for relaxation and to support a better night's sleep. Some of these apps start with a free trial but you may need to pay for them later.
Complementary therapies
Some people find that complementary therapies like acupuncture, reiki or massage make them feel more relaxed, and this can help to manage fatigue. Speak to your doctor or nurse before having complementary therapy. They can advise you on the safety of different types of therapy. Some complementary therapies might not be suitable or safe for you, depending on your health condition and treatment.
Read more information about complementary therapies.
Support for your feelings
Living with fatigue can be difficult. It might make you feel depressed, frustrated, anxious or guilty. If you're finding it hard to cope, try talking to someone you trust about how you're feeling. This could be a friend, family member or your doctor or nurse.
You can also contact our free Support Line on 0800 090 2309* for practical information and emotional support. Or you can email us at support@mariecurie.org.uk
Your doctor or nurse can prescribe medicines to help, and they can refer you to another professional for more support. A counsellor or psychologist can help you to understand and work through your feelings.
Counselling is a talking therapy that is sometimes free at hospices, hospitals or GP surgeries. If this is something you want to try, ask your doctor or nurse. They can let you know what talking therapies are available locally and can help you decide which treatment is best for you. For more information about free counselling services speak to your GP.
You may also be able to get private counselling, which you need to pay for. For more information, ask your doctor or look for a qualified counsellor near you. Visit the British Association of Counselling and Psychotherapy website to see a directory of counsellors.
Having depression or anxiety can also make your fatigue harder to manage. Getting support for depression and anxiety may help to improve your fatigue too.
Fatigue towards the end of life
People can feel more fatigued as their illness progresses and they approach the end of their life. You can still use all the techniques that have helped before such as pacing yourself and planning what you do. But the things that are most important to you might change and you might want to prioritise different things.
Towards the end of life, everyday activities may become too tiring to do. Needing to sleep or rest more than usual is normal.
Read more information about what to expect at the end of life. You can also contact the free Marie Curie Support Line on 0800 090 2309*. Or email us at support@mariecurie.org.uk
Supporting someone with fatigue
If your friend or family member has fatigue, there are things you can do to support them:
- Understand that your relationship to the person might change as they may need you to help them with more activities.
- Talk to them about what activities are most important for them now.
- Support them to do those activities at their own pace.
- Support them to do things independently if they can. Be aware that how much they can do might change over time.
- Be prepared that you might need to take on more tasks such as cooking and cleaning. If you need extra help with this, speak to the person's doctor or their social worker, if they have one.
- Encourage the person to talk about any fears or worries they have.
Supporting someone with a terminal illness can be rewarding but it can also be very challenging. If you need extra support, speak to your GP about how you're feeling. They can support you with your own health, refer you to a social worker or recommend support groups in your local area.
You can also call the free Marie Curie Support Line on 0800 090 2309*. Or email us at support@mariecurie.org.uk
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About this information
This information is not intended to replace any advice from health or social care professionals. We suggest that you consult with a qualified professional about your individual circumstances. Read more about how our information is created and how it's used.
