Voluntary work

There are a variety of organizations that may be contacted with a view to finding out about doing voluntary work.

TIMEBANK

TimeBank is a national volunteering campaign that:

offers a number of ways to get involved in your local community;

runs a number of targeted volunteer initiatives; e.g. in sport, the environment and the arts.

For further information telephone 0845 456 1668 or visit the website at http://www.timebank.org.uk.

UK VOLUNTEERING FORUM

The UK Volunteering Forum brings together the four national volunteering development agencies in the UK, and offers a range of resources for potential volunteers, volunteer managers, and anyone seeking up-to-date information on volunteering. For further information visit the website at http://www.ukvf.org.uk/.

NCVO

The National Council for Voluntary Organisations (NCVO) is the umbrella body for the voluntary sector in England. You can contact the organization by telephoning their help desk on 0800 2798 798 or by visiting their website at http://www.ncvovol.org.uk/.

CITIZENS ADVICE BUREAU (CAB)

The Citizens Advice Bureau (CAB) is an organization that gives free, confidential, impartial, and independent advice on a wide range of subjects including employment, benefits, housing, and debt.

For further information contact your nearest CAB by telephoning or dropping in during working hours Monday to Friday. The CAB main website can be visited at http://www.citizensadvice.org.uk/.

Website for information on CFS

The Chronic Fatigue Research and Treatment Unit based at King’s College Hospital, London, has a website offering further information about CFS: http://www.kcl.ac.uk/projects/cfs/.

Referral to a specialist

If you have found that the book has helped you, but feel that you would like to be seen by a specialist in CFS, ask your doctor if there is a specialist center in your area and if you can be referred to it.

Finding a therapist

If, after working through this book, you would like to have some sessions of cognitive behavior therapy with a therapist, you can ask your doctor to refer you to a qualified therapist in your area who specializes in working with people with CFS. Alternatively you can contact the British Association for Behavioral and Cognitive Psychotherapists (BABCP), which holds a list of accredited therapists who work both privately and in the NHS. You can contact it via the website http://www.babcp.com.

Please note that the information in this chapter was correct and up to date in September 2009.

  PART FOUR

How Others Can Help

Introduction

This part of the book has some brief information for people who are close to you. It talks about what chronic fatigue is, how it can affect you, and how they can help.

  15

Some guidelines for partners, relatives and friends

It can be extremely helpful to people suffering from chronic fatigue syndrome (CFS) to have someone near them who understands a little about their problems and the way in which they are trying to tackle them.

The purpose of this chapter is to give you:

some basic facts about chronic fatigue syndrome;

guidance on how you can help them to get the best out of this book.

Facts about chronic fatigue syndrome

What is chronic fatigue syndrome?

Chronic fatigue syndrome (CFS), also known as post-viral fatigue syndrome or myalgic encephalitis (ME), is a condition which affects people in different ways. The main symptom is persistent fatigue, which can be severe and disabling, leading to a restricted lifestyle. Other associated problems may include painful muscles and/or joints, sore throats, headaches, dizziness, poor concentration, and memory loss. Problems with sleep are common; for example, sleeping more during the day, having difficulty in going to sleep at night, and waking frequently. Sleep is seldom refreshing.

Fatigue and other symptoms will differ greatly among individuals. As a result of their symptoms, people with CFS may be greatly restricted in their lives. For some, symptoms can be so severe that they remain in bed or rarely leave their home. Others are able to carry out activities for some of the time, for example go to work, look after the home, or do a course of study, but become so exhausted at other times that they are unable to do anything else.

What causes CFS?

There has been a lot of speculation about different causes of CFS, but it is unlikely that a single cause will ever be identified. However, the following factors seem to be associated with the onset of the illness in many cases:

an initial illness or a series of infections;

leading a busy or stressful lifestyle, whether at work or at home;

stressful life events such as bereavement, moving house, changing jobs, getting married, ending a long-term relationship: all these may lead to increased vulnerability to infections and/or fatigue;

having high personal expectations and striving to do things ‘perfectly’: this can be frustrating, causing despondency and fatigue.

What keeps CFS going?

People often ask why the CFS keeps on going, months or maybe years after the person first became ill. Some of the reasons are listed below.

Resuming normal activities too soon after an initial infection may sometimes delay recovery.

Resting too much once an initial infection has subsided can cause its own set of problems. The body becomes out of condition quite quickly: the muscles, immune system and nervous system are particularly adversely affected. The problems which may ensue include muscle weakness, being more prone to illness, and feeling sluggish, with poor memory and poor concentration.

Alternating overvigorous exercise with resting for long periods can inadvertently make the problem worse in the longer term, as the body does not get used to a consistent pattern of activity and rest.

An irregular bedtime or getting-up time, or resting too much in the day, may contribute to disturbed and unrefreshing sleep at night. Not sleeping well at night is likely to increase feelings of fatigue and other symptoms.

Worries about activity making the illness worse may lead people to stop or reduce certain activities. This restriction of lifestyle in turn can cause them to feel frustrated and demoralized.

Receiving advice from a variety of sources can lead to confusion and uncertainty about what to do for the best.

The debilitating effects of CFS can lead to other problems; e.g. financial difficulties, reduced social contacts, or changing roles within the family. These difficulties can understandably trigger feelings such as frustration and helplessness. These feelings, which are a natural human response to stress, can then lead to low mood for some people and depression for others. Low mood itself can lead to a variety of problems including tiredness, which can further reduce the desire to be active.

How can you help?

If you are close to someone with CFS who is using this book, your understanding and support can be extremely helpful in assisting them to get better. This book describes a variety of techniques based on cognitive behavior therapy (CBT). This is a pragmatic approach that is helpful to some people with CFS.

The following are some ways in which you may be able to help your partner, relative, or friend.

Discuss with the person their views on how they best feel that you can help them. It may be that they want you to be significantly involved; e.g. by accompanying them on planned walks, phoning them to make sure they are out of bed, or discussing their progress on a daily basis. On the other hand, they may want to get on with their program by themselves, but want just a little bit of support and encouragement from you.

Take time to read the information in this chapter so that you understand a little more about CFS and what they are trying to do to overcome it.

Give praise for any achievements that the person makes, as this is likely to help them to recognize that they are improving. Achievements may be very small; for example, getting up 15 minutes earlier each day, walking for five minutes twice daily, not sleeping during the day, reading the paper for ten minutes a day. All achievements, however small, are signs of improvement.

Encourage all efforts that the person is making in relation to their program, whether it is doing a particular homework activity, filling in their activity diaries, or reading information in this book. The techniques described in this book are time-consuming and require a lot of effort, so the more support anyone gets for using them the better. Remind them that they can overcome their illness by persevering and that small step-by-step achievements are the key to success.

When your partner/relative/friend starts to tackle their unhelpful thoughts, they will initially be trying to identify thoughts that may be hampering their progress, such as ‘I will never get better’ or ‘I should be able to do more’. Once the person is able to identify these unhelpful thoughts, they will learn to challenge them and try to think of more ‘helpful’ or ‘positive’ alternative thoughts. You may be asked to point out when they say something ‘negative’ or ‘unhelpful’. Challenging unhelpful thoughts can be difficult as it is not always easy to see a helpful alternative. This particularly applies when someone is feeling poorly, upset, or a bit low. If your partner/relative/friend is struggling, especially if progress is slow, you may be able to help by pointing out some helpful alternatives; e.g. what they have achieved so far.

Please also consider the following points:

When starting to work through this book, the person may notice an increase in their symptoms. This is usually temporary and occurs as a result of changing their patterns of activity and rest. Encouragement and support at this time are particularly necessary as they may feel like reducing their activities in response to an increase in symptoms. It is important to stress that any increase in symptoms is both normal and temporary, a side effect that occurs because they are changing what they are doing. Encourage them to persevere with the techniques as people usually find that their symptoms gradually decrease and they are able to do the activities with less discomfort and then increase what they are doing.

Sometimes people want to do too much – usually on ‘good’ days when they are feeling better. It is important at these times to encourage them to stick to their program, as doing too much and not taking planned rests can lead to an unacceptable level of increased symptoms, delay progress, and lead to a setback.

If the person wants you to be actively involved in their program, it may be helpful for you both to set aside a regular time each week in which to discuss how they are getting on. This will give you the opportunity to reinforce their achievements, give encouragement when they are having difficulties, and discuss any worries that you have in relation to their program. It is important that you approach any concerns about their program, whether you think they are doing too much or too little, in a non-judgmental manner.

Setbacks can occur at any time. They are a ‘blip’ in the recovery phase and certainly do not mean that the strategies described in this book are not helpful. Setbacks are more likely to occur in certain situations; for example, if the person has another illness, moves house, has a bereavement or other distressing experience, or has a number of deadlines to meet. These stressful situations may give rise to increased symptoms and an inability to maintain their program. At these times, it is important to remind the person that setbacks are only temporary. Encourage them to read the appropriate sections of this book in order to get back on track again. Setbacks should be viewed as challenges to be overcome and not as disasters. If a setback occurs after the person has finished working through the book, then encourage them to devise a small activity and rest program for a few weeks, or until they feel they are managing better.

We hope that, after working through this book, people will be able to do more and need less rest. It is important to encourage them to continue with a balance between different kinds of activities and rest. Breaking this routine, or stopping certain activities, or resting at irregular times may lead to a risk of sliding back. As long as a good balance of activity and rest is maintained, then recovery will be sustained. They may gradually make quite substantial changes to their lives; e.g. returning to work, starting college, or taking over household responsibilities. Although these are all signs of good progress, making these changes can be quite frightening, particularly if the person has been ill for some time. Your support and understanding will almost certainly be appreciated.

  Appendix

Seeking professional help outside the UK

Association for Behavioral and Cognitive Therapies

305 7th Avenue

16th Floor

New York

NY 10001

USA

Tel: 212 647 1890

Fax: 212 647 1865

Website: http://www.abct.org

Australian Association for Cognitive and Behavior

Therapy (Western Australia)

E-mail: Rebecca.A.Anderson@gmail.com

Website: http://www.aacbt.org/

The European Association for Behavioural and Cognitive

Therapies has a list of member associations.

E-mail: eabct@vgct.nl

Website: http://www.eabct.com

  Index

aches and pains ref1

activity

daily program of ref1, ref2

diaries ref1, ref2, ref3, ref4, ref5

fear about increase ref1

increasing levels of ref1, ref2

introducing new ref1, ref2, ref3

monitoring levels of ref1, ref2, ref3

overvigorous ref1

planning activity program ref1

prioritizing ref1, ref2

program ref1

recording ref1, ref2

reduced tolerance to ref1

reducing ref1

regularity of ref1, ref2

reviewing program of ref1

stabilizing ref1

worrying about ref1

worrying about starting new ref1

activity program ref1

and future progress ref1

making changes to ref1

for people who generally do too much ref1, ref2

for people whose activities have greatly reduced ref1

planning first ref1

weekly review ref1

acupuncture ref1

adolescence, CFS in ref1

adrenaline production ref1, ref2, ref3, ref4, ref5, ref6, ref7

alcohol

sensitivity to ref1

and sleep patterns ref1, ref2

all-or-nothing thinking ref1

alternative medicine ref1

Americans with Disabilities Act (1990) ref1

antidepressants ref1

anxiety

associated with CFS ref1

exposure therapy ref1

managing ref1, ref2

physical symptoms of ref1

appetite loss ref1

Association for Advancement of Behavior Therapy (USA) ref1

assumptions ref1, ref2

Australian Association for Cognitive and Behavior Therapy ref1

automatic thoughts ref1, ref2

autonomic arousal ref1

average, being ref1

BABCP ref1

back-to-work schemes ref1

balance, life ref1, ref2, ref3, ref4

bed

avoidance of resting in ref1

comfort ref1, ref2

time spent in ref1

bedrooms

associations of ref1, ref2

temperature ref1, ref2

bedtime

routine ref1

time of ref1, ref2

behavior ref1

and anxiety ref1

changing patterns of ref1

beliefs

challenging ref1

core ref1

different levels of ref1

new/alternative ref1

benefits

giving up ref1

receiving ref1, ref2

bereavement ref1

biological clock, alteration of ref1

black-and-white thinking ref1

bloating ref1

blocks to recovery ref1, ref2

blood flow, altered ref1

blood pressure ref1, ref2, ref3

blood tests ref1, ref2

body rhythms ref1, ref2, ref3

body temperature, regulation of ref1

books, helpful ref1

boom and bust pattern ref1

bowel problems ref1

breaks

going without ref1, ref2

see also rest

breathlessness ref1, ref2

British Association for

Behavioral and

Cognitive

Psychotherapists

(BABCP) ref1

CAB ref1

caffeine

sensitivity to ref1

and sleep patterns ref1, ref2

cardiovascular system, changes in ref1

case studies ref1, ref2

catastrophizing ref1

CBT see cognitive behavior therapy

cell mitochondria ref1

central nervous system, autonomic arousal ref1

CFS see chronic fatigue syndrome

chest

pain ref1

tightness of ref1

childhood

beliefs and assumptions formed in ref1

CFS in ref1

children, reduced attention to ref1

chores

breaking into manageable chunks ref1, ref2

setting targets ref1

chronic fatigue syndrome

autonomic arousal in ref1

blocks to recovery ref1, ref2

case studies ref1

causes of ref1, ref2

CBT for ref1

conflicting advice about ref1, ref2, ref3

definition ref1, ref2

diagnosis ref1

fears about the illness ref1

guidance for partners, relatives and friends ref1

learning how to cope with ref1

maintenance of ref1, ref2, ref3

management of ref1

monitoring activity, rest and sleep ref1

physiological aspects of ref1

preparing for the future ref1

prevalence of ref1

setbacks ref1

setting targets ref1

sustaining improvements ref1

symptoms ref1

understanding your own problems ref1

unhelpful thoughts ref1

useful resources ref1

website ref1

worry, stress and anxiety related to ref1

circadian rhythms ref1, ref2, ref3

Citizens Advice Bureau (CAB) ref1

cognitive behavior therapy

definition ref1

procedures ref1

stages of program ref1

success with CFS ref1

comfort zones, breaking through ref1

complementary medicine ref1

concentration problems ref1, ref2, ref3

confidence, in own ability ref1, ref2

conflicting information ref1, ref2, ref3

conscientiousness ref1

consistency, of activity and rest ref1, ref2

core beliefs ref1

contesting ref1

formation of ref1, ref2, ref3

identifying ref1

maintenance of ref1, ref2

new/alternative ref1

reasons for changing ref1

corticosteroids ref1

cortisol, disturbed production of ref1, ref2

cultural issues ref1

daytime, sleeping during ref1

decision making, worries about ref1

depression ref1, ref2

diaries

activity ref1, ref2, ref3, ref4, ref5

new thoughts ref1, ref2

sleep ref1, ref2, ref3

unhelpful thoughts ref1

diet ref1, ref2

and sleep ref1

digestive problems ref1

disability allowances ref1

Disability Discrimination Act (1996) ref1

divorce ref1

DIY ref1

dizziness ref1, ref2

doctors

consulting your GP ref1, ref2, ref3, ref4

referral to a specialist ref1

downward arrow technique ref1

education

employment and educational schemes ref1

target setting ref1

emotional reasoning ref1

emotions ref1

distinguishing from thoughts ref1

employment rights ref1

encouragement ref1

environment ref1

as block to recovery ref1

sleeping ref1, ref2

European Association for

Behavioral and

Cognitive Therapies ref1

evening primrose oil ref1

evidence, of core beliefs ref1

exercise

grade ref1

reduced tolerance to ref1

regular ref1

setting targets ref1, ref2

and sleep ref1

experiments, testing core beliefs ref1, ref2

exposure therapy, and anxiety ref1

faintness ref1, ref2

family

changed role in ref1, ref2

guidance for ref1

problems within ref1

support of ref1, ref2, ref3

fatigue

definition ref1

vicious circle of ref1

feelings ref1

distinguishing from thoughts ref1

feet, blood flow ref1

fibromyalgia ref1

financial problems ref1, ref2, ref3, ref4, ref5

food intolerances ref1

friends

guidance for ref1

loss of contact with ref1

support of ref1, ref2, ref3

frustration, sleep problems ref1

gardening ref1

getting up, regularity of ref1

glandular fever ref1

guilt ref1

hands, blood flow ref1

headaches ref1, ref2, ref3

hearing, problems with ref1

heart rate, increase ref1

herbal remedies ref1

high expectations ref1

home

activity program at ref1

as block to recovery ref1

home improvements ref1

homoeopathy ref1

house, moving ref1

hyperventilation ref1

ICB (Incapacity Benefit) ref1

illness

fears about CFS ref1

other ref1

and setbacks ref1

immune system, disturbance of ref1

immunotherapy ref1

inactivity and fatigue ref1, ref2, ref3

physiological results of ref1

incapacity benefit (ICB) ref1

income protection ref1, ref2

Income Support (IS) ref1

infections

and onset of CFS ref1

resuming normal activities too early after ref1

influenza ref1

insurance, income ref1, ref2

irritability ref1

IS (Income Support) ref1

isolation ref1

jet-lag ref1, ref2

Jobcentre Plus ref1

jobs see work

joints, painful ref1

King’s College Hospital, London ref1, ref2, ref3, ref4

labelling ref1

lactic acid ref1

Learndirect ref1

leisure time, setting targets ref1, ref2, ref3

life, interconnecting aspects of ref1

life events

and CFS ref1, ref2

and setbacks ref1

lifestyle

balance ref1

and CFS ref1

making changes to ref1

and sleep patterns ref1

light

sensitivity to ref1, ref2

and sleep patterns ref1

Linkline ref1

loneliness ref1, ref2

low mood ref1

magnesium injections ref1

maintenance of condition ref1, ref2

marriage ref1

mattresses ref1, ref2

ME (myalgic encephalomyelitis) see chronic fatigue syndrome memory ref1, ref2

mental filtering ref1

mental functioning, changes to ref1, ref2

mind, over active ref1

mind-reading ref1

monitoring

activity levels ref1, ref2

progress ref1, ref2, ref3

sleep patterns ref1, ref2

target achievement ref1, ref2

mood disturbance ref1

mouth, dryness ref1

muscles

changes in function ref1

cramps ref1

painful ref1, ref2

tension ref1

myalgic encephalomyelitis (ME) see chronic fatigue syndrome

napping ref1

cutting out ref1

National Council for

Voluntary

Organizations (NCVO) ref1

national insurance contributions ref1

nausea ref1

NCVO ref1

neck muscles ref1

neighbors, support of ref1

nervous system, changes to ref1

neurasthenia ref1

New Deal ref1

New Deal ref1

Plus ref1

New Deal for Disabled People ref1

new thoughts diary ref1, ref2

nicotine, and sleep patterns ref1

night shifts ref1

nightmares ref1

noise

sensitivity to ref1, ref2

and sleep patterns ref1

numbness ref1

napping ref1

osteopathy ref1

overgeneralization ref1

pacing ref1

panic attacks ref1

partners

guidance for ref1

relationship difficulties ref1, ref2

support of ref1, ref2, ref3

perfectionism ref1, ref2, ref3, ref4

permitted work rules ref1

personal standards, high ref1, ref2

personality, and CFS ref1, ref2

personalization ref1

physical reactions ref1

physiological/psychological debate ref1

pins and needles ref1, ref2

pleasurable activities ref1, ref2, ref3, ref4, ref5

positive, elimination of the ref1

post-viral fatigue syndrome see chronic fatigue syndrome

postural hypotension ref1

predictions ref1

pregnancy ref1

problem-solving ref1, ref2

alternative solutions ref1

defining the problem ref1

evaluating solutions ref1

implementing solutions ref1

reducing worries at night ref1

professional associations ref1, ref2

progress

evaluating ref1, ref2

recording ref1, ref2

sustaining ref1

physiological/psychological debate ref1

pupils, dilation of ref1

PVFS see chronic fatigue syndrome

quality time ref1

recording see monitoring

recruitment rights ref1

redundancy packages ref1

regularity, of activity and rest ref1, ref2, ref3

relationship difficulties ref1, ref2

relaxation ref1, ref2

planning ref1

responsibility

for illness ref1

pie chart ref1

taking back ref1

rest

decreasing ref1

formula for calculating daily ref1

monitoring ref1, ref2

planning ref1

regularity of ref1

scheduling ref1

stabilizing ref1

too much ref1, ref2, ref3

what to do during ref1

restlessness ref1

risk-taking ref1

routine, establishing ref1, ref2, ref3, ref4

rules, formation of ref1

SDA (severe disablement allowance) ref1

self-expectations, high ref1, ref2, ref3

self-help programs ref1

setbacks ref1

managing ref1, ref2, ref3, ref4, ref5, ref6

support with ref1

triggers ref1

severe disablement allowance (SDA) ref1

short-term memory problems ref1

should and must statements ref1, ref2

sight, problems with ref1, ref2

sleep

in the day ref1

diaries ref1, ref2, ref3

disturbed patterns of ref1, ref2, ref3

environment for ref1, ref2

getting to ref1, ref2, ref3

hygiene ref1

monitoring patterns ref1, ref2, ref3

optimal patterns ref1, ref2

preparing for ref1

setting targets ref1

sleep-wake rhythm disturbance ref1, ref2, ref3

strategies to improve ref1, ref2, ref3

too much ref1, ref2, ref3

waking early ref1, ref2

waking frequently ref1, ref2

social activities, setting targets ref1, ref2

social support

lack of ref1

wrong kind ref1

statutory sick pay (SSP) ref1

stress ref1

associated with CFS ref1

continuing stressful situations ref1

managing ref1, ref2

supplements, dietary ref1

support ref1, ref2, ref3

support groups ref1

sweating ref1, ref2

‘switching off’ ref1, ref2, ref3

symptoms

and anxiety ref1, ref2, ref3

on CBT program ref1

CFS ref1, ref2

focusing on ref1

temporary increase of ref1, ref2, ref3

targets

breaking down into manageable steps ref1

clearly defined (measurable) ref1

different types of ref1

future ref1, ref2, ref3, ref4, ref5

how to set ref1

realistic and achievable ref1

setting your own ref1, ref2, ref3

sleep patterns ref1

specific ref1

target achievement records ref1, ref2

therapists, finding ref1

thoughts ref1

changing patterns of ref1, ref2

see also unhelpful thoughts

throat problems ref1, ref2, ref3, ref4

Timebank ref1

tingling ref1

tiredness

‘normal’ ref1

profound ref1

trauma ref1, ref2, ref3

trials, CBT for CFS ref1

triggers

of CFS ref1

of setbacks ref1, ref2

tunnel vision ref1

UK Volunteering Forum ref1

unhelpful core beliefs ref1

unhelpful thoughts

and anxiety ref1, ref2

and CFS ref1

challenging ref1

characteristics of ref1

diaries ref1

evaluating ref1

identifying and recording ref1

overcoming ref1, ref2, ref3

standing back from ref1

suggesting alternative thoughts ref1, ref2, ref3

support with ref1

writing an action plan ref1

urine tests ref1

vicious circles ref1

viruses ref1

vision, disturbed ref1

visualization techniques ref1

voluntary work ref1, ref2, ref3, ref4

walking ref1

warning ref1

website, CFS ref1

welfare benefits ref1, ref2

winding down ref1

women, CFS in ref1

words, searching for ref1, ref2

work

activity program at ref1

anxiety about ref1

changing job ref1

educational schemes ref1

employment rights ref1

and incapacity benefit ref1

income protection ref1

returning to ref1, ref2

stress at ref1

target setting ref1

worry

associated with CFS ref1

managing ref1, ref2

physical signs of ref1

and sleep problems ref1, ref2, ref3

see also problem-solving