Fatigue

Given the subjective nature of fatigue, it may feel different from one person to the next. Most people however, will experience a degree of fatigue which feels invasive in that, it affects them both physically and cognitively. This means that it is different to the tiredness you might usually have experienced prior to becoming ill or as a consequence of doing something pleasurable.

It is common for patients to sometimes find it difficult to adequately explain how cancer-related fatigue actually feels due to its invasive, fluctuating and troublesome nature.

There are no hard and fast rules for how long cancer-related fatigue will last. Some people report feeling increasingly fatigued in the months leading up to being diagnosed with cancer. Many patients expect to feel fatigued following diagnosis and during active treatments such as chemotherapy which can exacerbate fatigue. However, as diagnosis and treatments improve we are beginning to learn that people living with and beyond cancer may experience significant fatigue which interferes with day to day life for several months and, in some instances, for years. The good news is that, over time, cancer related fatigue may subside and a lot of people get back to their normal energy levels within six months to a year after finishing active treatments.

Your cancer episode and associated fatigue can negatively impact on all aspects of your day to day life. This may include disruption to your usual and taken for granted activities such as personal care, including showering and dressing; leisure and social activities, such as keeping fit or going out with family and friends; and others may experience disruption to work and educational attendance and performance. For people who are working and trying to manage with compromised energy levels, there may be a tendency to use most of their available energy for work purposes. By the end of your working week, you may find there is little left in your ‘battery’ for leisure activities and socialising.

Being unable to do everything you need, want and have to do can prevent you from being in contact with other people as much as you would like. This can understandably lead to feelings of social isolation and sadness.

Additionally, people may experience a sense of ‘loss of former self’ akin to feelings of bereavement and might grieve for the normal life they seem to have left behind. Some patients also worry about the cognitive impact of cancer-related fatigue which may lead to what some people describe as ‘brain fog’. This commonly includes reduced concentration, memory issues and word-finding difficulties, all of which can be scary.

You may also have worries over the expectations others may have of you in terms of pre-illness roles, responsibilities and involvement in day to day activities and events. As cancer-related fatigue is not always obvious to others, it might be that friends, family, or employers, do not seem to understand the impact of fatigue on a person’s life or how best to support them. This may cause you to experience some feelings of frustration, anger or guilt if you are currently unable to do everything you normally do, or what others expect from you. For some, feelings of anxiety and a sense of sadness may lead to distress and low mood which can be difficult to cope with alone.

Relationships of an intimate nature may also be affected by the presence of cancer-related fatigue and you may feel too tired to participate in sexual intercourse. Additionally, your partner may be cautious to do so and worry that they may make your fatigue symptoms worse.

All of these affects are commonly reported by people living with and beyond cancer. However, there are strategies that you can employ to help you better manage these and feel more in control of your day to day activities, roles and responsibilities.

The first step in self-managing your fatigue symptoms is acknowledging that you have cancer-related fatigue. Secondly, being self-compassionate and not expecting yourself to perform all the activities you did before you became ill will help if fatigue is an issue.

Congratulate yourself on what you do achieve rather than what you don’t regardless of how little it seems and do not compare yourself with others or past performance.

If you accept that your available energy is not currently what it used to be, you can then begin to think about how much energy you have in ‘your battery’, how you are using this and whether you would like to use it differently. This self-management approach will hopefully help you to regain some control over your daily activities, roles and responsibilities.

Research evidence demonstrates that activity management and energy conservation may help.

You can download our Sleep Hygiene Index Table and Activity Rest and Sleep log at the bottom of this page.

Here are some top tips for regaining control of your day to day life:

• Identify activities, both physical and cognitive, that drain your battery/energy the most and make a note of these.
• Identify activities that make you feel you have topped up your battery/energy levels. These may include physical activity, such as a paced walk, and do not necessarily mean resting or sleep. Make a note of these.
• Use a diary or calendar as a reminder and to note down what drains your energy and what tops you up.
• Pace the most draining activities and use top up activities to replenish your battery in between. This may help you get through to the end of the day easier.
• Prioritise which activities you need, want and have to do and decide whether they really all need to be done on the same day. Avoid over doing things when you are having a ‘good day’.
• Plan activities in a diary and pace them across the week if possible, to spread out energy expenditure. Plan outings and events and incorporate top up points during the day.
• Getting back to, or slowly introducing, some form of physical activity into your daily routines may help to reduce cancer related fatigue. There is also some research evidence to show this may also help you to return to pre-cancer levels of sexual activity. It doesn’t really matter what type of physical activity it is so it is your opportunity to choose something you would enjoy. It may be through attending a gym or yoga class, or pursuing something less traditionally considered as physical activity, such as dancing, which has been shown in some research to reduce cancer related fatigue.
• Communicate your needs and share your knowledge of leukaemia in a calm and articulate way with all those around you including family, friends, employers, colleagues and health professionals, some of whom will need to be educated by you, about the impact of fatigue on patients with cancer.
• If you are struggling emotionally, try learning a relaxation exercise, mindfulness technique and/or seek medical help from your GP to discuss other support. This may be in the form of counselling or ‘talking therapies’ and/or include temporarily taking medications to raise your mood and reduce anxiety.
• Eat a well-balanced diet and have nutritious snacks throughout the day to top up your energy levels.
• Adopt a relaxing ‘wind down’ regime an hour or two before you go to bed at night in order to promote relaxation and aid restful sleep. Sleep hygiene strategies may be helpful and enjoyable.
• Contact an organisation such as Relate relate.org.uk if you are struggling with communicating your needs to your partner, or intimate relationships.
• Access available information and local support groups and online forums see leukaemiacare.org.uk as this may help reduce feelings of social isolation.
• If you have concerns linked to employment issues contact your local Citizens Advice Bureau or access the Advisory, Conciliation and Arbitration Service (ACAS) website acas.org.uk. Reasonable Adjustments to your workplace and/or work role under the Equality Act, 2010, can be explored to make things easier for you and your employer.
• If you are a student, discuss the impact of cancer related fatigue with student disability services and request support from your organisation, such as extensions to hand-in dates for assignments, if needed.