Living well with cf web

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contents INTRODUCTION

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CHAPTER 1

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Challenges of Living with CF: COPE C: Changing health O: growing Older with CF P: CF and your Personal life E: Everyday care: the demands of staying well

CHAPTER 2

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Anxiety/ Depression: Dealing with the Black Dog CHAPTER 3

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Helpful Coping Strategies CHAPTER 4

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Taking Action: Becoming a Self-Manager WEBSITES/INFORMATION

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ACKNOWLEDGEMENTS

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CONTACT DETAILS

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©2013 by Dr. Ailín O’Dea, Senior Psychologist in Cystic Fibrosis, Beaumont Hospital, Dublin 9. All rights reserved. No part of this booklet may be reproduced, in any form, without written permission of the author. Email: ailinodea@beaumont.ie, phone (01) 8092881, or Dr Ailín O’Dea, Dept. of Psychology, St. Raphael’s Portacabins, Lr. Ground Floor, Beaumont Hospital, Beaumont Rd., Dublin 9.

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LIVING WELL WITH CF: Taking Care of You

Introduction

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ystic Fibrosis (CF) can be a physically challenging condition.

Having a diagnosis of CF means you will go through different ups and downs in your health. These changes will also affect how you’re feeling and thinking. It’s a cycle in some ways, because how you’re feeling and thinking will also affect how you deal with your CF. So looking after you, your emotional and mental health, is an important part of living well with CF. This booklet is about the kinds of challenges you may face as a person living with CF. It looks at what can help you to cope well and also at what can happen when you’re feeling overwhelmed. The information presented here draws on both the experiences of people with CF and on the research.

We hope you’ll find the booklet useful, though of course each person’s emotional journey with CF is as unique as the physical course of his or her condition. We also understand that the best person to describe what it’s like to deal with CF is you; the person with CF. That’s why we have included a feedback form at the back of this booklet. It means you can get in touch about your experience and make suggestions as to how we can improve future editions of this booklet.

It is important to note that many people who have a diagnosis of CF cope really well most of the time. That said there are times when some of the more difficult aspects of the condition can put physical and emotional pressure on you. This can lead to emotional distress from time to time. This booklet aims to speak to those times and hopefully offer support to help you through them.

Finally, warm thanks to the many patients in Beaumont CF unit who have contributed to this booklet by sharing their experiences. Thanks especially to those who agreed to being quoted here (patient quotes appear in italics).

LIVING WELL WITH CF: Taking Care of You

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Challenges of Living with CF: COPE

C

ystic Fibrosis is usually diagnosed at birth or early in life, so for most people it is something they journey with throughout their lives. This means that there may be long periods in a person’s life where they don’t really have to think very much about CF, besides perhaps doing their daily treatments and chest physiotherapy. For other people, antibiotic treatments and hospital admissions are part of their lives from quite early on.

It’s no one thing in CF, it’s all the different things added together that makes it hard to deal with.

Since there is clearly no “one size fits all” way of describing the emotional issues in CF, this section looks at the times people tend to find difficult. They’ve been divided into four sub-sections, summarised here by the word COPE:

C: CHANGE: O: OLDER: P: PERSONAL: E: EVERYDAY:

Changing health and CF growing Older with CF CF and your Personal life CF and the demands of Everyday care

C: CHANGING HEALTH & CF This section looks at five different areas:

1.

2.

3.

4.

5.

Change in Lung Function New Diagnosis New Treatments Burden of Treatment Dealing with a Moving Target LIVING WELL WITH CF: Taking Care of You

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1.

CHANGE IN LUNG FUNCTION Worry about a drop in lung function (FEV1) is a common cause of worry for people with CF. While the CF team emphasise that lung function is only one indicator of your overall health, a change in this score can be a source of stress.

This is often because of worry about how difficult it might be to get back to what your lung function was before now, or worries about what the change means in the long term. Changes in weight or other physical changes can also cause worry.

2.

NEW DIAGNOSIS A new diagnosis, such as diabetes, can be upsetting when the news is first given. It can feel like a lot to take on, on top of dealing with CF.

3.

NEW TREATMENTS The addition of new treatments to your routine can be stressful.

Sometimes, new treatments actually make your routine easier (e.g. nebs that take less time), but taking on new information and changing your routine is a challenge, even when the change is a positive one.

4.

BURDEN OF TREATMENT One important cause of stress for people with CF is the pressure of having several aspects of treatment to keep up on a daily basis. This often includes chest physiotherapy, medication, nutritional drinks/supplements and nebulised treatments. It’s a lot to manage and can feel like too much at times, particularly if you’re also dealing with a chest infection, or a stressful life event on top of CF.

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LIVING WELL WITH CF: Taking Care of You

5.

DEALING WITH A MOVING TARGET One of the most difficult things about CF can be that because of its changing nature, you may have to deal with new challenges on a regular basis. This can be difficult because coping with change is hard. You may have a year when you feel quite well and do not think much about your CF. On the other hand, sometimes a number of issues come together in CF (e.g. a number of chest infections or CF-related issues), which can be physically and emotionally exhausting. In other words, CF is often a changing condition, which can put pressure on you and your loved ones to change and adjust with it.

O: GROWING OLDER WITH CF The outlook for people with CF is very different today from what it was ten or even five years ago. New research studies are producing exciting findings every week.

New treatments are being developed and tested as you read this booklet. You may well be doing your bit in all of this by taking part in research or drug trials. People with CF are living longer and can expect a better quality of life than before. This also means that relatively new concerns, such as being a parent with CF, are now part of the mix of issues dealt with by many people.

This section looks at four different areas:

1.

2.

3.

4.

Changes to your treatment Having Children/Becoming a parent Loss of CF friends Transplant

LIVING WELL WITH CF: Taking Care of You

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1.

CHANGES TO YOUR TREATMENT

Needless to say, the CF team are there to guide and support you through important changes in your treatment. Getting a portacath inserted for easier access to veins, or getting a PEG feeding tube are examples of some of the changes people with CF may deal with over time. While Needless to say, they may be recommended by your CF team to benefit your the CF team are health, taking on something new can still feel difficult.

there to guide and support you through Worry about pain and about the procedure itself are important decisions common causes of concern. Worry about other people that affect misunderstanding CF and what it means are also part of why your health. such situations can be hard. Now and again, CF may become even more visible to others if your condition means that you need to use something like portable oxygen. Fears about how people might see you or react to you are very common when adjusting to something new like portable oxygen.

2.

HAVING CHILDREN/ BECOMING A PARENT Thinking about having children brings up different issues when you have CF. Firstly, there is the question of fertility testing for men, as most men who have CF cannot have children without the help of fertility treatment.

This means attending a specialist clinic. For both men and women, there is also the question of whether your partner is a carrier of the CF gene, and whether there is a risk that your child may have CF. However, there are people with CF who deal with these issues and go on to become parents.

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LIVING WELL WITH CF: Taking Care of You

Parenting can be both a stressful and rewarding task. For parents who have CF, there may be My Mummy certain extra things to consider. Childminding has CF for times when you need help or are unwell may be important. Worries about who will take care of your child if you become unwell is a common cause of concern. Explaining your CF to your child may also be a worry. Thankfully there are great resources now available to parents, such as story books that explain CF for children (My Mummy has CF available on the CF Trust website: http://www.cftrust.org.uk/aboutcf/publications/booklets/) and books that advise parents about how to tell their children about CF (see list of resources for parents at back of this leaflet). The social worker on your CF team may also be an important support. written by Andrea M Armitage illustrated by Jessica Stockham PUBLISHED BY THE CYSTIC FIBROSIS TRUST

3.

LOSS OF FRIENDS WITH CF Many people with CF have friends or acquaintances who also have CF, especially friends made through Facebook and online CF forums. A difficult part of growing older with CF is that you may become aware of individuals with CF who have died as a result of the condition. The death of a friend with CF can be a discouraging and difficult time. It may mean the loss of an important support person in your life. Sometimes it causes worry and questions about your own health.

LIVING WELL WITH CF: Taking Care of You

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4.

TRANSPLANT Last but certainly not least, the issue of lung transplantation is one you may be more likely to face as you grow older with CF. Lung transplantation in CF is a complex issue. The decision to go for transplant assessment in the first place is an important one, usually made jointly with your loved ones and the CF team. If transplant is something you are worried about, it can really help to talk openly to your CF team rather than waiting for someone on the team to bring it up first.

Being on a wait list for lung transplant can bring hope, since having a transplant can be a life-saving and life-changing treatment for people with CF. Of course having a lung transplant also brings risks and means you will need ongoing medical care after surgery. For some, waiting on a call for transplant can be stressful, as of course there are no guarantees as to when you will get a call. This is why it is important to have good support around you from the very beginning of your journey, when you may be thinking about whether or not transplant is the right option for you.

P: CF AND YOUR PERSONAL LIFE This section looks at four different areas:

1.

2.

3.

4.

1.

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CF ‘getting in the way’ CF becoming more visible Socialising/cross-infection CF and relationships

CF ‘GETTING IN THE WAY’ For some people, CF does not feature very much in their lives until something important has to change because of their health. Not being able to play sports at the level you used to, for example, or having to stop an activity altogether can feel like a huge loss at first.

LIVING WELL WITH CF: Taking Care of You

At a more ordinary level, doing something like starting a college course and having the extra burden of treatments on top of college life can feel very challenging and even unfair at times.

2.

CF BECOMING MORE VISIBLE Having a diagnosis of CF is only one part of who you are, but there are times when this part may become more visible in some way and this can be difficult.

Explaining your CF to a boyfriend or girlfriend, for example, can be a source of worry. Explaining to an employer that you need time off for home IVs or hospital appointments may also be difficult.

3.

SOCIALISING/CROSS-INFECTION As our understanding of cross-infection has developed, advice about mixing with other people with CF has changed. There is now a strict hospital policy which does not allow people with CF to socialise or interact faceto-face because of the risk of passing on bacteria.

For some people, especially those who shared wards with other people with CF as children, this has been a difficult and frustrating change. This is partly because a normal source of support for a person going through difficulties is to talk to other people in a similar situation. Unfortunately, for people with CF, using phones and social media is currently the safest way to interact with others who have CF. For some people this can add to a sense of loneliness when going through a difficult phase with CF.

LIVING WELL WITH CF: Taking Care of You

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4.

CF AND RELATIONSHIPS

Starting into a relationship with someone can be a fantastic and

exciting time. If you have CF, it

Sexual Health can also bring up issues such as in Cystic Fibrosis how you talk about your CF with your partner, and how you deal with the effect of CF on your life together. For more information on these issues, there are two % # )! # $ booklets you can read. One is a Beaumont Hospital publication called Sexual Health in Cystic Fibrosis (available in the CF unit). The other is a CF Trust publication called Cystic Fibrosis and Relationships: A collection of real life experiences, available on the CF trust website: http://www.cftrust.org.uk/aboutcf/publications/booklets/ Produced By:

Amandeep Kaur Mann, Sanjay Haresh Chotirmall, Cedric Gunaratnam and Noel Gerard McElvaney

CF is very hard for your partner to understand and it’s very difficult for them not to treat you differently, to worry‌it puts a huge strain on the relationship.

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LIVING WELL WITH CF: Taking Care of You

E: EVERYDAY CARE: THE DEMANDS OF STAYING WELL This section looks at four different areas:

1.

2.

3.

4.

Medical procedures Tests Body image/Food Hospital stays 1.

MEDICAL PROCEDURES Medical tests and procedures are an ordinary part of attending clinics and staying in hospital for people with CF; this doesn’t mean that they are always easy to cope with. Some people, for example, have very strong fears of needles, despite having to deal with them on a regular basis. Facing into a new procedure (e.g. a new Port being inserted) can also cause stress and anxiety.

2.

TESTS Routine tests (e.g. lung function test) can sometimes be a source of stress. This is especially true if, for example, you’ve been working hard on treatments and physio and you’re keen to see an improvement in your lung function.

Other tests (e.g. analysis of your sputum) can be a source of worry if, for example, you are concerned about new bacteria and treatments you may need for them.

LIVING WELL WITH CF: Taking Care of You

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3. BODY IMAGE/FOOD Body image worries are quite common for people with CF. People with CF often tend to be slimmer and may find it hard to keep weight on. This can be a worry for a number of reasons. Firstly, you will be encouraged by the CF team to keep to an ideal weight as this helps to fight chest infections. Unfortunately weight can drop very quickly during an infection. This can be very discouraging, especially if you’ve been working hard to get your weight up.

Cystic Fibrosis and Body Image

For some people being slim can be a worry in itself. This can be because of fears about how other people may see you or judge you (this issue is looked at in detail in the CF Trust booklet Cystic Fibrosis and Body Image, available on the CF Trust website: www.cftrust.org.uk/aboutcf/publications/booklets/).

Feeling pressure to put up weight can also make your relationship with food difficult from time to time. Feeling that you have to eat even when you don’t have an appetite can be stressful. Some surveys have found that fear of gaining weight can be a problem, particularly for women with CF. Changes to your body shape and self-image can be hard to cope with, even if weight gain might be a positive thing for your health. Women (not just women with CF) tend to report feeling more comfortable with a lower body weight, while men with CF more often describe feeling thin and wanting to be heavier.

A collec on of real life experiences Wri en by people with CF for people with CF

Other common body worries in CF include feeling conscious of having a bloated tummy, as well as feeling self-conscious of PEG sites, port sites and coughing. A common worry that is not often talked about, particularly for women with CF, is urinary incontinence. Finally, gaining weight post-transplant or as a result of steroid use can also be a source of stress in CF and may be an important part of the adjustment you have to make following transplant.

If you have had any or all of these body image worries it is important to know that you are not alone and that these are very common concerns for people with CF. Don’t be afraid to talk to your team if you need support. Practical help is available for many problems including, for example, urinary incontinence or tummy bloating. In particular the CF dietician and psychologist are there to help you with body image and food issues.

4.

HOSPITAL STAYS: Long spells in hospital or admissions that come quite close together can be stressful. While the team do their best to make you as comfortable as possible during your stay, hospital can never match the comforts of your own space where you have more control over your environment.

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LIVING WELL WITH CF: Taking Care of You

Anxiety/Depression: Dealing with the Black Dog

CF doesn’t let you get comfortable…I feel like there’s always something around the corner and that really gets me down sometimes.

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oping with a chronic health condition can be stressful full stop. It probably comes as no surprise that having a condition like CF leaves you more at risk of going through periods of emotional distress.

Sometimes it can even lead to periods of depression or problems with anxiety because:

Having a physical health condition like CF affects more than your body; it impacts on your relationships, work, family and the choices you make in life.

If your CF becomes really difficult to deal with you may feel a lack of control over your life, which can be a scary experience.

Despite all the supports you might have around you, dealing with the difficult parts of having CF can be a lonely experience; it can be hard to talk about your fears, sometimes because you’re afraid of upsetting people.

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WHEN STRESS GETS OUT OF CONTROL Everyone gets down sometimes. Everyone has anxious days for all kinds of reasons.

As already mentioned, dealing with CF brings its own particular difficulties, and these are bound to cause upset and worry from time to time. One bad day, or even a few bad days, doesn’t mean you have a problem. Most times you will work through the upset by yourself and move on.

There are times, however when you may need extra support. If, for example, you feel that you are getting so down you’re in a depression, or so worried that you have an anxiety problem then it’s probably time to look at it.

Anxiety and depression often come together. They form part of your body’s warning system; your body’s way of saying “hey, there’s something not right here”. This might be for any number of things such as: ■ ■ ■

There is something out of balance in your life.

There are worries you need to unpack and look at.

You’re carrying a heavier load of stress than is good for you.

Signs that your worry is becoming an anxiety problem might include the following;

THOUGHTS Constant worrying thoughts about CF or other things Dread; feeling like the worst will happen a lot of the time Stressful thoughts intruding in your mind when you don’t want them

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FEELINGS

BODY SENSATIONS

Feeling tense or wound up/ unable to relax

Butterflies; unexplained tummy upset/diarrhoea

Agitation/restlessness

Dizziness/feeling faint

Panic/intense fear that comes “out of the blue”

Being aware of your heart beating

Fear of losing control

Panic/sudden fast breathing

LIVING WELL WITH CF: Taking Care of You

Signs that you may be going through a depression include the following;

THOUGHTS

FEELINGS

BODY SENSATIONS

Losing interest in things such as your appearance

Feeling like a failure/ disappointed in yourself

Feeling tired/ slowed down

Critical/self-blaming thinking

Guilt/ loss of self-confidence

Sleeping a lot less OR a lot more than usual

Not expecting things to go well/not looking forward to future

Not being able to enjoy things like you used to

Eating a lot less OR a lot more than usual

Difficulty making decisions Difficulty concentrating

Feeling sad Crying or feeling like you want to cry but can’t

Feeling people would be better off without you/ thoughts of suicide (though difficult to talk about thoughts of suicide are very common in depression)

A very important point here is that with both anxiety and depression, some of the symptoms are also signs of other physical health issues.

This is why it’s so important to talk to your doctor and CF team, first and foremost, to check whether symptoms such as stomach upset, fast breathing or sleep problems are not a sign of other medical problems.

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YOUR DISTRESS AND YOUR CF

Courage is not about being brave and not being scared.

Sometimes it is that quiet voice at the end of the day that says I will try again tomorrow Part of the reason it’s so important to deal with feelings of distress is because they have such an impact on your CF. Feeling motivated to do your daily CF routine of nebs, physiotherapy etc. can be hard at the best of times. If you’re struggling with depression, motivation to do your treatments can be the first thing to go. It can work something like this:

FEELING LOW/ OVERWHELMED

CF SYMPTOMS GET WORSE FEEL GUILTY/UNWELL

LOSE MOTIVATION: DON’T DO TREATMENTS

As for anxiety, sometimes with CF feeling a little anxious or worried can help motivate you to do treatments. If your anxiety gets out of hand however, and you become overwhelmed, it can cause you to “freeze” and feel unable to do anything.

Sometimes it can cause you to avoid dealing with your CF altogether (the “fright or flight” response). For that reason it’s important to keep anxiety in check. The interesting thing is that the more you learn and understand about your treatments and your CF, the more in control you tend to feel. So, as in most things, avoiding dealing with it (tempting as this might be sometimes!) tends to increase anxiety.

As for anxiety, sometimes with CF feeling a little anxious or worried can help motivate you to do treatments. If your anxiety gets out of hand however, and you become overwhelmed, it can cause you to “freeze”.

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LIVING WELL WITH CF: Taking Care of You

WHAT TO DO IF YOU’RE ANXIOUS OR DEPRESSED Positive coping strategies are discussed in a later section. These strategies can help you cope with distress so that it does not become a serious problem. If you are answering “yes” to a lot of the symptoms of anxiety and/or depression described here however, then you may need to look beyond your usual support system for help.

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It’s ok to have a bad day, cry or do whatever you need to, everyone has bad days.

Talk to a Health Professional you Trust Your first port of call could be to talk to a health professional; your CF nurse, your CF consultant, your GP, or any member of your healthcare team that you trust. The team are used to dealing with these issues and can often reassure you, especially about health worries you might have. The team can also help you to get other supports (e.g. psychology and social work) that you may need.

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Counselling/ Therapy There is a lot of confusion about what’s involved in counselling and psychological therapy. The most important thing if you’re feeling depressed or anxious is that you talk to someone you trust in a confidential space where you never feel judged. It is also important that the person you talk to is qualified and experienced to work with the difficulties you are going through.

The psychologist on the CF team is there to help you, especially through difficult times. Don’t put off making contact; get in touch to make an appointment if you want to talk. It doesn’t have to be a crisis with your health; it can be about everyday worries that are on your mind. Of course, you are also welcome to make contact in a time of crisis. The psychologist can help you understand what’s happening and support you on the road to recovery.

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The social worker on your CF team is also there to support you through difficult times. Social workers are especially good at supporting you with family and relationship issues, as well as helping you put practical things in place to help you cope.

As a Beaumont patient you are invited to contact the psychologist or social worker directly (details at back of booklet) if you want to meet with them. You can also ask any member of the CF team to make a referral to social work or psychology on your behalf.

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Support Groups If you are going through a period of depression or anxiety there are self-help groups (such as Aware) you can join. Many people find it very helpful to talk to others in the “same boat” when they’re going through a bad time.

Once again, it’s important to try it out and decide if it’s the kind of support you need.

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Medication Feeling very anxious or depressed when you have CF is a serious issue. This is partly because, if you are feeling very anxious or low, you may lose motivation to look after yourself. Unfortunately, this can quickly put you at risk of getting an infection or becoming unwell. For this reason, it’s important to move quickly with depression or anxiety in CF. Part of your treatment plan might include medication such as antidepressants. While medication is not always a long-term solution, it can help you through a difficult patch. It might help pull you out of the worst of your distress so that you can function a bit better and do other things to help you get well. Your CF doctor will sometimes suggest you look at the issue of medication with a psychiatrist, a doctor who has expertise in this area.

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LIVING WELL WITH CF: Taking Care of You

Helpful Coping Strategies When I’m thinking well I’m feeling well.

I

t’s a short statement, but the quote you just read summarises this whole section in many ways. You might find it interesting to know that the patient who said this is someone who has dealt with a lot of the most challenging aspects of CF for a long time. “Thinking well” doesn’t always mean being positive. Expressing anger, upset or frustration can be a positive thing if it’s what you need to do. This section is about the kinds of things that can help you cope in the best possible way with your CF.

TALK

It’s important to realise you’re not the first person to feel like this and it’s okay to feel down.

Talking helps. It’s not always possible to change the reality of what you’re dealing with, but talking to the right person can help you to deal with that reality in the best possible way. Oftentimes, it’s through talking about something that you’ll learn how you really feel about it.

The right person to talk to might be a person close to you, though some things are easier to share with people who are not so close. Think about the people in your life who can support you in the different ways listed on next page.

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TYPE OF SUPPORT

NAMES (fill in)

People I can depend on in a crisis People I can be totally myself with People who make me laugh People I can talk to about my feelings People who are good listeners People who share my interests and hobbies People I can cry with People I can be quiet with People who make me feel good about myself People I can talk to when I’m scared People who can explain my CF and treatments People who can help me with big decisions People who can help with financial matters People I can talk to about my symptoms People who make me feel good about my future

STAY ACTIVE

I feel better about myself when I keep active.

We all know exercise is great for the body and the mind. Not so many of us follow all the good advice with the right actions. Taking exercise could be even more of a challenge if you are dealing with breathlessness, fatigue or poor body image. In spite of this it is really important to try and keep moving, at whatever level you can, because of the many benefits of physical activity. Exercise, even at low levels, can boost your immune system, your sense of well-being and your mood. Even simple stretches or a short walk can help. Talk to your CF physiotherapist about what kind of exercise is right for you.

Low mood kills motivation. That’s why sometimes it’s good to commit to an activity (e.g. a shopping trip with a friend), even if you don’t feel in the mood to go. When your mood is down you often have to go ahead and do the thing before you feel like doing it; chances are you’ll feel better after.

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LIVING WELL WITH CF: Taking Care of You

CONNECT A lot of people with CF overcome the cross-infection problem by making contact with other people who have CF on the internet. There are plenty of social networking sites and online forums (some

CF sites on Facebook help...talking to CF’s from all over the world and finding out how they cope. listed at the end of this booklet) you may want to access. The internet can be a mixed bag however, it is important to look at the kinds of messages being posted on the site to decide if it is right for you. Negative messages and even cyber-bullying can happen on CF sites as much as any other interactive website.

LAUGHTER AND FUN

With friends I laugh and joke… sometimes laughing and joking about something scary makes it less scary.

It’s not always easy to see the funny side of things, especially when you’re unwell, but having a laugh is a great way of relieving stress. When you laugh, feelgood chemicals (endorphins) are released in your brain and your muscles relax. In the longer-term laughter and positive thoughts also support your immune system by fighting stress and helping you feel connected with others. Again, it’s whatever works for you. For some people, comedy DVDs are great, for others getting out for a night or being around friends you enjoy does the trick.

RELAXATION AND MINDFULNESS Coping with CF can be demanding. Over time stress can build up and cause tension, both physical and mental. That’s why it’s important to really stop and “take the temperature”, tune in to your body and your mind for some few minutes every day.

This time-out might be a relaxation exercise, a short meditation or whatever focused relaxation you find helpful.

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Some exercises like relaxation breathing and progressive muscle relaxation are aimed at relaxing the body. Other exercises use imagery to help quiet the mind with pleasant thoughts and distraction.

Mindfulness can also be very useful. It is a practice that helps you to stay in the present moment. This is done through paying attention to what’s happening in your body and your mind, here and now. A very important part of this is how you pay attention. Mindfulness is about paying attention to yourself in a gentle and even a loving way. It is not about trying to relax, but more about learning how to accept things just as they are.

The Beaumont Hospital website has a great resource where you can learn more about relaxation and mindfulness, the Mindfulness and Relaxation Centre (MARC).

There are a wide variety of relaxation and mindfulness exercises you can download free of charge for your personal use (lookup Mindfulness and Relaxation Centre under Departments on www.beaumont.ie/marc) The exercises on the MARC site are all safe and gentle. For some, though not all people with CF, focussing on the breath is difficult or stressful. The thing to do is try the exercises and see what works best for you. If one type makes you uncomfortable in any way, try something else from the menu. If you are worried about whether an exercise is okay for you to complete, ask your doctor for advice.

For Beaumont patients there is also a regular Stress Management course run by the Health Promotion Department in the hospital. You can contact Health Promotion for information on upcoming dates.

WATCH YOUR THOUGHTS!

I think how I feel healthwise ties in hugely with how I am feeling mentally. If I am down in myself I feel sick, chesty, tired. But when I’m happy, even if I have an infection, I still feel good. So I try to keep on top of my thoughts, don’t let things build up.

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LIVING WELL WITH CF: Taking Care of You

Thoughts affect feelings and feelings affect action. It goes something like this:

THOUGHTS

ACTIONS

FEELINGS

A simple example; you have a lung function test, you don’t score as high as you’d hoped and the following might happen: What’s the point? I worked so hard and still didn’t get the score I wanted!

Cut back on nebs Exercise less

Discouraged Down

A different cycle can happen if you are paying attention to your thoughts and try to catch the automatic thought (i.e. “what’s the point? I worked so hard and still didn’t get the score I wanted!”) as it happens and gently challenge it with a more helpful thought: I did my best, the drop is only slight, I’m doing well to keep the level I have

Keep up nebs Continue with exercise

Encouraged Motivated LIVING WELL WITH CF: Taking Care of You

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When you look carefully at it, an unhelpful thought or self-statement often comes before a difficult feeling or emotion. We all have patterns of thinking that are unhelpful. The problem is they often become automatic, so we’re not even aware they are happening. Unless we stop and examine our patterns; take a look at the table below to see if you recognise any of the unhelpful thinking styles:

UNHELPFUL THINKING STYLES MENTAL FILTER: Usually this means looking at the negative parts of a situation and forgetting the positive parts, so the whole picture is coloured by what could be a single negative detail (e.g. “my weight has dropped so this clinic visit was a total disaster”).

SHOULDING AND MUSTING: Sometimes by saying “I should…” or “I must… ”you can put unreasonable demands or pressure on yourself and others (e.g. “I should never need to do IV antibiotics”).

JUMPING TO CONCLUSIONS: We jump to conclusions when we assume we know what someone else is thinking (e.g. “the doctor looked worried so he must think I’m doing really badly”) and when we make predictions about what will happen in the future.

OVERGENERALISATION: When we overgeneralise, we take one instance in the past or present, and impose it on all current or future situations. Often we use phrases like “I always…” or “Everyone…” (e.g. “everyone thinks I look thin”).

PERSONALISATION: This involves blaming yourself for everything that goes wrong or could go wrong, even when you may only be partly responsible or not responsible at all (e.g. “if I hadn’t been so busy I wouldn’t have got a chest infection”).

LABELLING: We label ourselves and others when we make strong statements based on particular situations, even though there are examples that don’t fit the label (e.g. saying “I’m just no good with hospitals” because you find going to clinic stressful).

CATASTROPHISING: Catastrophising occurs when we “blow things out of proportion“, and we view the situation as terrible even though the problem itself might be manageable (e.g. “I missed one round of IV’s, so there’s no point in doing any more of them”).

EMOTIONAL REASONING: This thinking style involves basing your view of situations or yourself on the way you are feeling (e.g. “I have a bad feeling about this clinic visit, I just know something’s going to go wrong”).

BLACK & WHITE THINKING: This thinking style involves seeing only one extreme or the other. You are either wrong or right, good or bad and so on. There are no in-betweens (e.g. there’s no point in doing chest physio since I haven’t done it any day this week”).

MAGNIFYING AND MINIMISING: In this thinking style, you magnify positive parts of others and minimise your own (e.g. “Joe Bloggs has it easy, he’s never unwell. I’m always on IV’s”).

This is just a sample of the information that’s out there about the links between thinking, feeling and behaviour. If you’re interested and feel this is an area you could 26

LIVING WELL WITH CF: Taking Care of You

work on there’s lots more you could look up for yourself (see websites listed later).

Also, there are specific programmes you could follow (some “cognitive behaviour therapy” programmes) for help with particular problems like shyness, anxiety or depression. Sitting down with a therapist or psychologist to look at your patterns in more detail is also an option to consider if you feel you could benefit from it.

MAKE PLANS

I don’t let CF rule my life. Plan holidays, even if you’re on oxygen; plan a trip in Ireland, a weekend break with friends. This gives me something to look forward to, to think positively about. It gives me an extra reason to keep myself as well as possible, to do all my meds and nebs….I plan my future.

No matter how sick you are don’t let CF make you put your life on hold.

If your CF leaves you feeling very unwell, you might feel like your life is out of control. CF patients (like in the quote above) often report that planning something nice in co-operation with your team, even something small, is really important to get you through those times. It might be as small as meeting a friend in the hospital coffee shop while you’re an inpatient. It could be a longer-term plan like learning to drive or doing a class. It all helps you put a shape on your day and gives a focus to help you through the days when you’re struggling.

LIVING WELL WITH CF: Taking Care of You

27

The first responsibility of any chronic disease self-manager is to understand the disease. This means more than learning about what causes the disease and what you can do. It also means observing how the disease and its treatment affect you‌..Some of the most successful self-managers are people who think of their illness as a path. This path, like any path, goes up and down. Sometimes it is flat and smooth.

At other times the way is rough.� (p.7 Living a Healthy Life with Chronic Conditions)

Taking Action: Becoming a Self-Manager iving life with a chronic condition can be challenging. Living life with CF can be especially challenging for lots of reasons. One important reason is that the journey with CF can be hard to predict. Sometimes this can lead to feeling a lack of control or a feeling of helplessness. Becoming a selfmanager of your CF is therefore an important part of taking back some control.

Setting goals for myself (e.g. going to college) or something as simple as walking the dog... makes me feel more in control of my life.

This approach also fits with the research, which shows that the people who manage best with their CF treatments tend to cope in a positive way (they score high on optimistic acceptance and hopefulness). The people who over-use distraction and avoidance as ways of coping with CF tend to do less well with their treatments.

So what can you do to become a good self-manager? There are a few important things to lay the foundations:

1 2 3

Learn as much as you can about your CF; talk with your CF team, ask questions; remember you are a partner in your care Learn what coping strategies work for you; look after your emotional and mental health Set goals; around your CF and your everyday life LIVING WELL WITH CF: Taking Care of You

29

SETTING GOALS: START WITH AN ACTION PLAN

Pla n

A few basic points on setting goals and making action plans are as follows (adapted from Living a Healthy Life with Chronic Conditions); 1.

It has to be something YOU want to do

2.

It has to be reasonable (you can do it in a week)

3.

It has to be specific (e.g. “drinking one more Fortisip each day” as opposed to “putting on weight”)

4.

It needs to answer the questions;

5.

■

What?

■

How much? (How many times a week?)

■

When?

■

How often?

You have to feel confident it’s something you can achieve

Deciding what you want to do is probably the trickiest bit. You might truly want to follow your treatment regime exactly and exercise every day, but if at the moment, you only take your treatments now and again and excercise once a week then you're unlikely to do a complete u-turn. Well, you might do everything for a few days, or even a week, but you’ll probably quickly fall back into your old ways. On top of that you’ll probably feel a sense of guilt or failure for not following through on your goals.

So setting reasonable goals is really important.

Start off with a small action plan. What’s the most important thing for your health at the moment? Is it to get better at taking a particular neb, or to do more exercise?

Your CF team will help you here. While of course we encourage patients to do everything they’re supposed to do, we know that in the real world this doesn’t always happen. So don’t feel embarrassed if you feel your CF routine is not so great at the moment; be honest with the team and ask for help setting goals and getting back on track.

30

LIVING WELL WITH CF: Taking Care of You

SUPPORTING YOU ACTION PLAN: CHARTS AND APPS It’s important to write down and record your plan and the results. You can use different tools to do this. If you have a mobile phone you can probably set reminders to help you. If you have a smart phone there are lots of applications you can use, depending on your goals. Different apps available at the moment include; ■

Medication trackers/pill trackers

■

Chest physiotherapy app

■

Inhaler counter (for help with nebs)

There’s also the old pen and paper option; it’s important to write out your action plan using a chart something like this so you know exactly what you’re doing.

SAMPLE ACTION PLAN FORM This week I will take X neb

(What) (How much) (When) (How many)

How confident am I?

(Rate 1-10)

DAY

CHECK OFF:

COMMENT:

Monday

✓

Great start; reminder on phone helped

Tuesday

✓

Left if a bit late but got it done

Wednesday

✕

Felt too tired and chesty; didn’t have energy

Thursday

✓

Guilt of missing yesterday made me do it

Friday

✓

Told mam about plan; she reminded me

Saturday

✕

Had fight with boyfriend; didn’t feel like it

Sunday

✓

Thought about my plan; felt motivated again

An important part of all of this is sitting down to review what’s happening, what’s working? And, if you’re not achieving your goals, what’s getting in the way? Did you set the bar too high? Do you need help to achieve your goal? Do you need to look at any unhelpful thinking that might be getting in the way (e.g. “there’s no point, I missed my neb yesterday”- see earlier section on unhelpful thinking styles)?

LIVING WELL WITH CF: Taking Care of You

31

Even more important part is to reward yourself for a job well done. Rewards can be any treat that you enjoy (e.g. a few hours of online gaming at the end of the week or a trip to your favourite cafe).

The point of course is to start off small and in time you may build in the different elements of your routine to put together a chart something like this (there’s a blank form at the back of this booklet for your own plan);

ANNE’S WEEKLY CF CHECKLIST Monday

MEDS: Aquadek Losec

WEEK START DATE: Tuesday Wednesday Thursday

MEDS:  Aquadek  Losec

MEDS:  Aquadek  Losec

MEDS:  Aquadek  Losec

Friday

MEDS:  Aquadek  Losec

Saturday

Sunday

MEDS:

MEDS:

 Aquadek  Losec

 Aquadek  Losec

 

INHALERS: INHALERS: INHALERS: INHALERS: INHALERS: INHALERS: INHALERS: Seretide AM  PM  TOBI podhaler AM  PM 

Seretide AM  PM  TOBI podhaler AM  PM 

Seretide AM  PM  TOBI podhaler AM  PM 

Seretide AM  PM  TOBI podhaler AM  PM 

Seretide AM  PM  TOBI podhaler AM  PM 

Seretide AM  PM  TOBI podhaler AM  PM 

Seretide AM  PM  TOBI podhaler AM  PM 

NEBS:

NEBS:

NEBS:

NEBS:

NEBS:

NEBS:

NEBS:

Ventolin AM PM

Ventolin  AM  PM

Ventolin  AM  PM

Ventolin  AM  PM

Ventolin  AM  PM

Ventolin  AM  PM

Ventolin  AM  PM

 

Hypertonic S. Hypertonic S. Hypertonic S. Hypertonic S. Hypertonic S. Hypertonic S. Hypertonic S. AM  AM  AM  AM  AM  AM  AM  PM  PM  PM  PM  PM  PM  PM  Pulmozyme Pulmozyme Pulmozyme Pulmozyme Pulmozyme Pulmozyme Pulmozyme AM  AM  AM  AM  AM  AM  AM  PM  PM  PM  PM  PM  PM  PM  32

LIVING WELL WITH CF: Taking Care of You

OTHER LIFE GOALS: TAKING THE SCENIC ROUTE Just as important in all of this is setting goals for things you want to do outside of your CF routine. The same points apply in setting these goals. You can use the Action Plan Form to break the goal down to smaller steps, as well as whatever technology, reminders etc. might help.

A difficult part of having a condition like CF is that you may have to overcome more obstacles when it comes to certain life goals. Say, for example that you’re keen to finish a college course. If you have a busy daily treatments schedule and you tend to need IV antibiotics from time-to-time it may mean you have less time to attend classes/ study, and you may even need time off college every so often.

Taking the scenic route to your goal means that you might have to be more flexible and creative as to how you get there. With the college course, for example, you might need to take it part-time over a few years, as opposed to full-time study. You might need to get accommodation very near college or on-campus to cut down on commuting time. You might have to explain your situation to your tutors or even get in touch with the disability officer in college to make more flexible arrangements for getting your course work done.

The key message, however, is that there is often a scenic route or an alternative way of getting to your goal. It’s important to dream, think ahead and imagine where you want to be in your life. It’s also important to talk to your CF team about your hopes; since their job is to help you enjoy the health you need to achieve your goals.

It’s important to dream, think ahead and imagine where you want to be in your life.

LIVING WELL WITH CF: Taking Care of You

33

USEFUL WEBSITES/MORE INFORMATION INFORMATION ABOUT CF: www.cftrust.org.uk/ www.cfireland.ie/

MENTAL HEALTH SUPPORT: www.headsup.ie/ www.headstrong.ie/ www.yourmentalhealth.ie/ www.beaumont.ie/marc www.letsomeoneknow.ie

MEDICAL SELF MANAGEMENT: www.restartliving.org/

PARENTS WHO HAVE CF: www.cysticfibrosis.ca/assets/files/pdf/WhenAParentHasCFE.pdf

DRUGS/ALCOHOL: www.drugs.ie www.talktofrank.com

CBT WEBSITE: http://www.cci.health.wa.gov.au/resources/consumers.cfm

POSITIVE COPING/SUPPORT See the following website for 40 practical tips for mental health and well-being, put together by the Psychological Society of Ireland; www.psychologicalsociety.ie/psychology-matters-psi www.patientslikeme.com

USEFUL APPS HEADSPACE MEDITATION CYSTIC FIBROSIS CONNECT 34

LIVING WELL WITH CF: Taking Care of You

ACKNOWLEDGEMENTS SPECIAL THANKS ARE DUE TO THE FOLLOWING FOR HELP IN FORMING AND EDITING THIS BOOKLET:

THE BEAUMONT FOUNDATION for their generous funding.

The CF TEAM at BEAUMONT HOSPITAL; Dr Cedric Gunaratnam, Ruth Hannon and Fiona McInerney deserve special mention for giving detailed feedback.

The PSYCHOLOGY TEAM at BEAUMONT HOSPITAL, thanks especially Norah Jordan (past Department member), Mark Dillon for his computer skills, Mark Mulrooney for his one genius suggestion and Jenny Wilson-O’Raghallaigh for permission to use the MARC website details.

Thanks to Esther Behan for her endless patience in designing the booklet.

Inspiration came from the Irish Cancer Society booklets: “The Emotional Effects of Cancer” and “Who Can Ever Understand?”

Inspiration also came from the Arthritis Ireland booklet: “Coping With Emotions”.

The Centre for Clinical Interventions website (cci.gov.au) was helpful in forming the section on “unhelpful thinking styles”.

“Living A Healthy Life With Chronic Conditions” by Lorig et al. informed Chapter 4 of this booklet Finally, and most importantly, warm thanks to the many people with CF attending the Beaumont Hospital CF Unit who have made, and shaped, this booklet by sharing their stories. It is a genuine privilege to work with you.

Orla Walshe was particularly generous with her time and gave detailed feedback on an earlier draft of this booklet.

Dean Archbold also contributed much to this booklet with his valuable insights.

LIVING WELL WITH CF: Taking Care of You

35

WEEKLY CF CHECKLIST WEEK START DATE:

Monday

MEDS:

Tuesday Wednesday Thursday

Friday

MEDS:

MEDS:

 

MEDS:  

MEDS:  

 

Saturday

Sunday

MEDS:

MEDS:

 

 

 

INHALERS: INHALERS: INHALERS: INHALERS: INHALERS: INHALERS: INHALERS: AM PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 

AM PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 

NEBS:

36

NEBS:

NEBS:

NEBS:

NEBS:

NEBS:

NEBS:

AM PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 

AM PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 

AM PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 AM  PM

 

LIVING WELL WITH CF: Taking Care of You

FEEDBACK FORM Things I liked about this booklet:

Things I didn’t like about this booklet:

Changes I suggest to future editions of this booklet:

Thank you for your feedback. Please send it to: Dr Ailín O’Dea, Dept. of Psychology, St. Raphael’s Portacabins, Lr. Ground Floor, Beaumont Hospital, Beaumont Rd., Dublin 9 or Email feedback to: ailinodea@beaumont.ie LIVING WELL WITH CF: Taking Care of You

37

NOTES

DESIGN/LAYOUT: Esther Behan, Tel: 086-0728191.

38

LIVING WELL WITH CF: Taking Care of You

CONTACT DETAILS

CLINICAL PSYCHOLOGIST Dr Ailín O’Dea, Beaumont Hospital Tel: 01-8092881/ 01-8092223 - bleep 044.

Email: ailinodea@beaumont.ie

SOCIAL WORKER Fiona McInerney – Tel: 01-809 3290 - bleep 037

CF UNIT RECEPTION Jean Kirwan – Tel: 797 4851 / Fax: 01-797 4868

CF NURSE SPECIALISTS Helen McCarthy Annemarie Lyons Claire Bolton – Tel: 01-852 8404

PHYSIOTHERAPIST Eleanor Styles – Tel: 01-797 4866 - bleep 040

DIETICIAN Ruth Hannon – Tel: 01-809 2357 - bleep 763

LIVING WELL WITH CF: Taking Care of You

39

“Sixty-five roses” is how many children first learn to say “cystic fibrosis”.

The purple rose, like the rose pictured, has become an internationally-recognised symbol of cystic fibrosis.