Coping with fatigue

There are many causes of fatigue including:

• previous treatments
• anaemia
• eating problems
• pain
• other symptoms due to illness
• psychological effects of illness

Fatigue affects everyone differently and can cause many different symptoms. Some people find that their fatigue is very mild and does not interfere much with their daily life; however, for some people it is extremely disruptive. Some of the more common effects are described below.

• Difficulty doing the smallest chores. Everyday activities like brushing your hair, showering or cooking can seem impossible
• A feeling of having no energy. You feel as if you could spend whole days in bed
• A feeling of having no strength to do anything
• Lack of concentration
• Having trouble thinking, speaking, or making decisions
• Difficulty in remembering things
• Feeling breathless after only light activity
• Dizziness or a feeling of light-headedness
• Difficulty sleeping (insomnia)
• Loss of sex drive
• Feeling more emotional than usual

Fatigue can affect the way you think and feel. You may find it impossible to concentrate on anything. This may affect your work, but it can also occur with things that you usually enjoy doing; even reading or watching TV can be difficult.

Fatigue can affect your relationships with family and friends, as it may make you become impatient with people around you, or lead you to avoid socialising because it is too much effort.

Planning

Planning ahead is important with fatigue. Plan your day so that you have time to rest and do the things you want to do most. It is important to be realistic about what you can do and not try to do too much.

You may wish to consider keeping a fatigue diary to help you to see how treatment affects your energy levels. This may help more with planning activities for times when you are likely to have more energy. An example of a fatigue diary can be found on the Macmillan Cancer Support website.

Doing things for yourself is very important, but try not to feel guilty if you have to ask other people to help.

An occupational therapist can visit your home to help you to find ways of saving your energy.

Managing day-to-day

Family, friends, neighbours and social workers can all help you with your everyday activities and are often glad of the opportunity to support you. Here are some tips and ideas which may help you.

Housekeeping

• Spread tasks out over the week
• Do a little bit each day rather than a lot in one go
• Ask other people to do heavy work where possible
• If you can afford it, employ a cleaner; if not, you can ask for a home help from social services. However, depending on your circumstances you may still need to pay for this
• Use a wheeled shopping bag to carry supplies and shopping
• Sit down to do whatever chores you can
• Use long-handled dusters, mops and dustpans where possible
• Ask someone to take your rubbish bags out

Shopping

Ask others to do the shopping when you can. If you can’t, or would rather shop yourself, these suggestions may help:

• Make a list before you start
• Write the shopping list following the layout of the store so you don't make more work than necessary
• Use the shopping trolley for support
• Shop at less busy times
• Ask for help in the shop/supermarket with packing and carrying groceries to the car, or ask them to deliver
• Shop with a friend
• Do your shopping over the internet and have it delivered

Laundry

• Where possible, always use a trolley to move your washing to and from the washing machine
• Get help to hang up washing
• Use a lightweight iron
• Sit down to iron
• Use non-iron clothes
• Slide the iron onto a heat-proof pad to avoid lifting it

Meal preparation

• Try cooking simpler meals
• Reheat convenience/precooked meals
• Try eating little and often – eat small meals and snacks throughout the day
• If you can, sit while preparing meals
• Prepare extra dishes when you are feeling less tired and freeze them for when you need them
• Prepare double portions and freeze half for later
• Use oven dishes you can serve from, to save washing up
• Don’t lift heavy pans – dish out at the stove
• Ask others to move heavy items to the table
• Avoid bending and stretching when preparing
• Let dishes soak rather than scrubbing and let them dry themselves
• Use a dishwasher if you have one
• Use placemats instead of tablecloths. They are easier to put on the table, and to clean

Child care

One of the worst aspects of fatigue is that sometimes you might feel that you are letting your family down. This can be especially upsetting when you have children. No one is suggesting that you must ask others to take over caring for your children. However, there are things that you can do to make the caring a bit easier on yourself:

• First of all, explain to your child(ren) that you are feeling tired and so will not be able to do as much with them as before. You may be surprised at how well they respond
• Plan activities with your children that can be done sitting down
• Try planning activities where there are facilities to sit while the children enjoy themselves
• Don’t lift smaller children. Use a pram or pushchair if you have to transport them
• You may be able to involve your children in some household chores
• Accept offers from trusted others to take your children to and from school or childcare
• Accept friends’ and neighbours’ offers to look after your children occasionally
• Get babysitters in from time to time so you can do some of the things you enjoy doing

You may find that you can’t continue working due to fatigue, or that you have to reduce the amount of time that you spend at work. It can help to talk to your employer or personnel/human resources officer and let them know that you may need some time off due to your illness or its treatment.

Don’t feel that you have to work if you are too tired, but if you do want to carry on working, you may be able to find ways of making your work less tiring for a while.

People with certain illnesses are protected by the Equality Act, which prevents employers victimising or discriminating against people with a disability. The Act also states that employers are expected to make reasonable adjustments to support employees in the workplace. You may want to make suggestions for adjustments that could help to support you. Things that your employer can do to help include:

• changing your hours so that you can travel to and from work at less busy times (outside the rush hour)
• asking colleagues to be supportive and to help with some of your work
• finding you a parking place near to your place of work
• letting you take a short break every now and again to lie down and rest
• allowing you to work from home, if possible
• finding you lighter work if your job involves physical exertion or heavy lifting

If you are self-employed, it can help to talk to the Department for Work and Pensions about benefits that you may be entitled to claim.

Some useful hints:

• keep a diary of what and when you eat every day
• try to take advantage of the times when your appetite is best
• if your taste changes, try different foods, or eat the foods that taste best to you
• ask your doctor or nurse for any leaflets that are available which give dietary advice
• you can also ask your doctor to refer you to a dietitian, who can give you helpful ideas

It's important to try to exercise a little if you can, even when you are unwell. Research has found that exercise may actually help relieve the symptoms of fatigue. The problem is that too much exercise might make you tired, as can too little, so it’s important to find your own level. A good balance between being active and getting plenty of rest is best. The physiotherapist at the hospital may be able to advise you about what would suit you.

General suggestions for exercise

• Regular, light exercise such as walking has been shown to reduce fatigue as well as nausea and vomiting, and can help some people to sleep better
• Plan some activity or light exercise into your day
• If exercise is impossible, try to stay active in your daily routine
• Pay attention to how your body reacts to exercise: how did you sleep? How did you feel the next day?
• Drink plenty of fluids before, during and after exercise
• Perhaps keep a record of your activities to share with your doctor or nurse, so they can help monitor your progress
• It's important to find a balance between activity and rest, and to exercise in a way that allows the muscles to recover after activity
• Don’t exercise if you feel unwell, are in pain or have any other symptoms that worry you, such as feeling breathless. Let your doctor know if you feel unwell or have worrying symptoms

It’s very important to try to keep a normal sleeping routine when you're ill, even though your fatigue may make you feel like sleeping all the time. There are many ways to overcome fatigue which your nurse or doctor will be happy to discuss with you. In the meantime, the following might be a useful guide to make the most of your rest periods:

A 10-point plan for better rest

Sleep quality is very important and may help to fight fatigue as well as reduce your need to sleep during the day. The following  pointers should help ensure better night-time rest.

1. Sleep just long enough

Sleep for as long as you need to feel refreshed during the following day, but not more than necessary. Limiting time in bed seems to produce better-quality sleep. Too much time in bed can lead to disturbed and shallow sleep.

2. Wake up at the same time every day

A regular wake-up time in the morning seems to strengthen most people’s sleep routine and eventually leads to regular times of going to sleep.

3. Exercise regularly if you can

A regular daily amount of exercise may help to deepen sleep over the long term.

4. Reduce noise

Occasional loud noises (such as aircraft flying overhead) disturb sleep, even if you don’t remember the disturbance in the morning. If your bedroom is noisy, you could mask some of the noise using a small electric fan, or you could use ear-plugs.

5. Keep a steady temperature in your bedroom

If your room is either very warm or very cold, your sleep may be affected. Room temperature should be comfortably warm.

6. Have a bedtime snack

Hunger may disturb sleep. A light bedtime snack, warm milk, or a hot drink seems to help some people to sleep better.

7. Avoid stimulants

Many people who have problems sleeping are very sensitive to stimulants. It is best to avoid drinks that contain caffeine and chocolate for a few hours before bedtime.

8. Know how naps affect you

Some people find that daytime naps help them sleep better at night, while others sleep less well after them. Find out what suits you best.

9. Limit your intake of alcohol

Alcohol can help tense people to fall asleep more quickly, but the sleep tends to be broken. It is advisable, therefore, to avoid large amounts of alcohol near bedtime.

10. Know when to say 'enough'

Rather than lying in bed tossing and turning, you could get up and watch television or read a book. Wait until you feel tired again and then go back to bed. Audiotapes with stories may help you to sleep, and are stocked in most bookshops and libraries.

Mental exercises can also help you to sleep. These usually take about 10 minutes and include:

• trying to remember the lines of a song or poem
• making alphabetical lists of girls’ or boys’ names, countries, trees or flowers
• reliving a favourite experience in every detail
• writing a letter in your head
• relaxation exercises

Your body will still get some benefit from lying quietly in bed resting, even if you are not actually asleep. Although you may feel as if you have been awake all night, you may well have managed to have several hours of good quality sleep.

Making time for activities that help you relax is very important in dealing with and preventing fatigue. Stress uses up energy and can make you feel more tired. It is very likely that you will feel more stressed than usual when you start treatment for your illness.

Suggestions for relaxation

The following suggestions may help you to relax:

• talk to others about anything that is worrying you
• try distraction techniques such as reading, seeing friends and listening to music, to take your mind away from worrying thoughts
• if you can, try to avoid some situations that make you anxious
• take light exercise, such as walking

Although relaxation is often seen as ‘doing nothing’, many people find it hard to unwind, especially if the stresses and strains of the day are difficult to forget. However, specific relaxation techniques can help to relieve tension and recharge your batteries.

There are two types of relaxation exercise:

• physical ones, which work on tension in your body
• mental ones, which help to relax your mind

It is important that you find a quiet, warm, dimly lit, relaxing place where you will not be disturbed, then lie or sit in a well-supported position. You will get the maximum benefit from these techniques if you practice them for 5 to 15 minutes each day; just experiment until you find the best exercise for you.

It is not possible to describe each technique in detail in this section; however, the following list will give you an idea of what is involved. Ask if there is a nurse or other health professional in the hospital who can help you with this.

• body awareness – concentrating on different parts of your body
• tensing and relaxing each part of your body in turn
• breathing exercises
• imagery exercises
• relaxation tapes (music or natural sounds such as bird song or rippling streams)

Talking to your doctor or nurse

Prepare for your next appointment with your doctor or nurse by writing down questions that you want to ask.

Never be embarrassed to ask them to repeat and explain anything that you don’t understand.

Your care and wellbeing is the doctors’ and nurses’ priority, so describe all of your symptoms to them. It can be difficult for anyone to understand how much fatigue can affect your life, and how distressing it can be, unless they have experienced it themselves. For this reason you may need to emphasise to your doctors and nurses the difficulties that it causes for you.

Discuss everyday actions that you find difficult, such as climbing stairs, cooking or bathing. If you have kept a fatigue diary you can bring it in to share with the health professionals looking after you.

It can often be difficult to discuss emotions, especially when you are ill, for fear of upsetting yourself and others. Try not to let embarrassment stop you discussing your emotions with your doctors and nurses. It may help if you take someone to the appointment with you. When you have fatigue it can be difficult to remember what the doctor or nurse has said and your relative or friend can help to fill in the gaps.

Specific questions you may like to ask:

• What could be causing my fatigue?
• What treatments may help me?
• How can I cope with my fatigue?
• What help is available?
• How can I best support my relative who has fatigue?
• What can I do to help reduce my fatigue?

Talking to other people

Some people find that it can help to talk to other people who have had fatigue. You may be able to speak to someone at a local support group. Talking to other patients at the hospital may also be helpful.

Things that you can do to help someone with fatigue include:

• Understand the different ways of dealing with fatigue by reading the information in this section
• Write down the impact of fatigue on their daily life
• Write down the impact of fatigue on your daily life
• Go with them on their visits to hospital, where possible, and discuss the impact of fatigue on your lives
• Discuss with the doctors and nurses the ways of reducing fatigue that you have already tried
• Discuss what could be causing the fatigue
• Take in a fatigue diary and discuss it with the doctors/nurses
• Look through the diary with the person you are caring for to find any pattern of fatigue
• Identify times when they have more energy to arrange activities such as having family round to visit, shopping, and working

Taking time for yourself

If you care for a person with fatigue, it can be very difficult to take the time that you need for yourself.

Carers Scotland can give you support and information.