Fatigue is more than feeling tired, and it can affect your body, thoughts and emotions. It’s a common symptom when you have a terminal or life-limiting illness. It can be frustrating and upsetting, and may affect what you’re able to do. But there are small changes you can make to help manage your fatigue, and ways to get support with this too.
What is fatigue?
Fatigue is a constant feeling of extreme tiredness, weakness or lack of energy. It does not always get better after rest or sleep. It can affect people in different ways, and at different points in their illness.
You might:
- feel very tired, exhausted, or like you have no energy
- feel physically weak, or like your body feels heavy
- get tired quickly and need to rest more, even during small tasks
- sleep more
- find it hard to concentrate or remember things
- feel low, anxious, irritable, or have other difficult emotions.
Fatigue can change from day to day, and may be worse at certain times of the day.
It can limit how much you can do and may affect your independence. It may affect different areas of your life, such as work, hobbies, and spending time with people important to you. Even things like walking, washing or dressing may feel exhausting. It may also affect relationships with those around you, as you might need more support.
These life changes may affect how you feel about yourself. They can be really difficult to deal with, both emotionally and practically. Some people find fatigue one of the hardest symptoms to cope with.
Managing fatigue
There is no single treatment that takes away fatigue completely. But small changes may help you use your energy in ways that matter most to you. How to manage fatigue will vary from person to person. And there may be ways the people around you or professionals can support you.
Focus on what matters most to you
You might not have enough energy to do everything you used to. Focus on things most important to you, such as spending time with friends and family, or doing something you enjoy.
You could also make a to-do list. Then decide what needs to be done, what you could ask other people to do, what can be delayed, and what could be left.
Pay attention to how your body feels
- Rest when you need to, even if it feels earlier than you expect.
- Try not to push yourself to keep going when you are exhausted.
- Accept that your energy may change from day to day.
- Allow yourself to have days doing very little or nothing, if that’s what your body needs.
Balance activity and rest
You could:
- allow time for rest after each activity
- spread activities across the day or week
- plan a rest day after a particularly busy day
- stop before you feel very tired or exhausted.
Pacing yourself or doing things more slowly can feel difficult, especially if you’re not used to it. But it can be a helpful way to manage having limited energy.
Change how you do tasks
Small changes can save energy. You could:
- sit down while doing tasks
- gather everything you need before starting a task
- use mobility aids such as shower chairs or walking aids
- use long-handled cleaning tools, and long shoe horns to avoid bending and stretching
- ask someone else to help with tasks such as shopping or cleaning.
An occupational therapist (OT) can help with aids, equipment, and changes to tasks. You could ask your GP, district nurse, council or Health and Social Care Trust to refer you to an OT.
Use a fatigue diary and planner
You could try keeping a diary of how tired you feel during activities, and at different times of day. This may help you work out what affects your fatigue most, and plan your activities and rest around what works for you.
Gentle movement or exercise
Some people find that some level of movement helps with stiffness, comfort, mood and energy levels. This could be short walks, stretching or moving in bed or a chair, or an activity like gardening.
Only do what feels manageable. This will be different for everyone, and not everyone finds physical activity possible.
Your doctor or nurse can advise what is safe for you. And they could refer you to a physiotherapist, who can help you to find movements that fit with your needs.
Eating and drinking
Lots of people with a terminal illness eat and drink less, which can affect energy levels. You could try:
- eating little and often if large meals feel too much
- choosing foods you enjoy – these might change over time
- drinks or snacks that give you lots of calories and nutrition, instead of meals.
Wanting to eat less is natural towards the end of life. If you do not feel like eating, try not to worry. Focus on food and drink you enjoy. Your doctor or nurse can help if you or the people around you have questions or concerns.
Sleep and rest
- Rest during the day if you need to. Short naps may be better than long ones.
- Try to sleep somewhere that’s a comfortable temperature, quiet, and not too bright.
- Avoid looking at screens for at least an hour before bed.
- Do something that relaxes you before going to bed – for example reading a book or listening to music.
- Try getting up and going to bed at the same time each day.
- Avoid having caffeine, nicotine, alcohol or large meals close to when you go to bed.
- Tell your healthcare team if any symptoms affect your sleep, such as pain, breathlessness, or anxiety.
Complementary therapies
Some people find complementary therapies relaxing or comforting. These may include:
- massage
- reiki
- acupuncture.
These therapies do not treat the cause of fatigue. But they may help you feel calmer or more comfortable. Always talk to your doctor or nurse before trying any therapy to check it is safe for you.
Talking about fatigue
Fatigue is not always visible, and it can be difficult for people to understand. This can mean people may not realise how much it affects you.
Talking about how fatigue makes you feel and how it affects your life, can help people understand changes they may have noticed. And it can be an opportunity to ask for help if there are things you’re finding difficult. Having these honest conversations can help ease stress for you and others.
Getting support from your doctor or nurse
You can also speak to your doctor or nurse about your fatigue. They can check whether there is anything causing it that could be treated. For example, side effects from a medicine or an infection.
They may make other suggestions about how to manage fatigue. And they may be able to refer you for further support. For example, occupational therapy, local fatigue groups, or emotional support.
The emotional impact of fatigue
Dealing with fatigue can affect how you feel about yourself and your life. You might feel:
- frustrated or angry about not being able to do what you’d like to
- guilty about needing help or rest
- worried about running out of energy
- sad about losing your independence
- lonely if you cannot socialise, or if others do not understand how you are feeling.
Looking after your emotional wellbeing
There may be times you feel unable to do much, or anything at all – this is OK. Acknowledging this, and giving yourself permission to do nothing may help with feelings of stress or worry. During these times, you could find something you enjoy doing that helps you relax.
You might also find it helpful to:
- talk about how you feel
- try breathing or relaxation exercises
- spend time outdoors or by a window if you can.
You could talk to a family member, friend, faith leader, or someone in your healthcare team about how you’re feeling.
If you feel you’d like further support, your doctor or nurse may be able to refer you to different services. For example, a counsellor or psychologist can help you to understand your feelings, and find ways to cope. Or you could look for private counselling, which you’d need to pay for.
Your healthcare team, local hospital, or hospice may have a chaplaincy or spiritual care service. You do not need to be religious to have this support.
Causes of fatigue
Lots of things can cause fatigue when you’re living with a terminal illness. It can be hard to know the exact cause, and there is usually more than one. These can change as your illness or treatment changes.
Effects of your illness
Illness can cause fatigue, including but not limited to cancer, heart and lung disease, kidney failure, and motor neurone disease. Your body uses more energy to cope with illness.
Your illness may also cause changes in your body that can make you feel more fatigued. For example:
- changes in hormones
- some organs not working as well
- symptoms like pain and breathlessness.
Side effects of treatments
Some treatments can cause fatigue, such as:
- chemotherapy
- radiotherapy
- immunotherapy
- surgery.
The fatigue may continue for months or longer after treatment has finished. Some medicines can make you feel sleepy, drowsy or less alert. These include strong pain medicines (such as opioids), medicines for anxiety, and anti-sickness medicines.
Speak to your doctor or nurse if you have concerns about any of your treatments. They may review these to see if they could be causing your fatigue.
Eating and drinking less
Lots of people living with a terminal illness eat and drink less. This may be caused by:
- having a lower appetite
- feeling sick (nausea)
- changes in taste, or problems swallowing.
Eating or drinking less may mean you have less energy. But it’s usually not the only thing causing your fatigue. Speak to your doctor or nurse if you have questions or worries about eating and drinking.
Sleep, rest and activity levels
Fatigue may be affected by how much sleep you get, the quality of your sleep, and how active you are. Sitting or lying down for long periods may, over time, mean exercise and daily tasks become more difficult. But doing lots of things without having some rest may make you feel very fatigued.
It’s important to find the right balance for you. See Managing fatigue above for tips on making the most of your energy.
Infections and other conditions
Different conditions caused by your illness or treatment may cause fatigue. For example, infections, or low iron or red blood cell levels (anaemia). Your doctor or nurse may be able to treat some of these causes.
How you feel mentally and emotionally
Depression, anxiety, and feeling worried, sad or stressed may cause fatigue, or make it worse.
Planning for future care
Thinking about the future can help you feel more in control and less worried. You might want to think about:
- where you would prefer to be cared for
- who you want to be involved in decisions
- what brings you comfort or meaning
- how you would like to use your energy.
Your healthcare team can help you make plans that feel right for you.
End of life fatigue
Fatigue usually gets worse as an illness progresses, but this is different for everyone. For example, some people need to go to bed earlier, or need help with things they previously did themselves.
Many people sleep more and eat less towards the end of their life. They may have very little energy to talk or move. These changes are a natural part of dying, and do not usually cause the person pain or distress.
There may be a point towards the end of life when trying to treat fatigue is not the best option for someone. For example, trying to give them food and water may be uncomfortable for them. Fatigue may even give some comfort at this stage. If they are more sleepy, they may be less aware of difficult symptoms like pain or anxiety. This point is different for everyone, and may be in the last weeks, days, or hours of their life.
It’s OK if you or the people around you feel worried or scared if your fatigue gets worse. Your doctor or nurse should help keep you comfortable, and support you and those close to you during this time. You could speak to them if you have any questions or worries about the end of life.
Supporting someone with fatigue
Supporting someone with fatigue can be difficult. Fatigue can be hard to understand if you have not experienced it or known anyone who has.
It can be worrying to see someone sleep more, stop doing things they enjoy, and even stop doing daily tasks that seem small. Some things in your relationship may change, and you may find you need to do more. This may affect your own energy levels, work, and personal life. You might be understandably confused, frustrated or worried.
You may wonder:
- Is this normal?
- Am I letting them rest too much?
- Should I encourage them to eat, move or stay awake?
- Does this mean they are getting worse?
Try to remember that fatigue is a common and natural part of living with a terminal illness. As an illness progresses, the body needs more energy to cope, and people often rest and sleep more. This is not caused by a lack of effort or motivation.
Fatigue may get worse towards the end of life (see End of life fatigue above).
How you can help
You can support someone with fatigue by:
- finding out how fatigue feels for them, so you can better understand what day-to-day life is like for them
- understanding that energy levels can change from hour to hour or day to day
- accepting that fatigue will happen, even when care and treatment are good
- letting the person rest when they need to, without pressure or guilt
- offering help, but respecting the person’s choices about what they can manage
- focusing on comfort and what matters most, rather than trying to do everything
- letting them know they can talk to you about how they’re feeling
- suggesting ways to spend time together that will not need much energy
- explaining their fatigue to others who may not see or understand how it affects them.
Getting support for yourself
Caring for someone with a terminal illness can be physically and emotionally exhausting. It’s important to also consider your needs, and whether you’d like emotional or practical support too.
The nurse, doctor or another member of the health or social care team may be able to help by:
- helping with tiring or practical tasks
- encouraging rest without pressure
- answering questions, and talking about any worries.
You could ask if they know of any local support services. For example, community or voluntary groups, or services at a local hospice or hospital. Carers UK have a directory of local support services for carers.