It is important to have a toolkit of things to try out for times when our strong feelings might make us act in unhelpful ways.

This leaflet gives some ideas for you to try out at home.

Dealing with Chronic Fatigue (CFS/ME) in Young People

We have learnt how feelings affect our bodies (especially strong ones like anger and anxiety), and we know from cognitive behaviour therapy that they can also affect how we behave.

If we feel angry and frustrated, we might shout or swear at someone (often someone who we really love and who really loves us).

If we feel anxious and worried about something (like trying to make a new friend), we might avoid doing it, and make up excuses.

If we start shouting at someone, you can see what might happen next. They might shout back, even louder. Or they might cry.

In the end, we have even more problems than when we started!

If we avoid making friends, we end up with no friends! We know that having friends can help people get better, so having them is a GOOD THING.

With thanks to Professor Paul Stallard, The University of Bath, for his original work, from which this has been adapted.

This is one of a series of information leaflets on managing CFS/ME in children and young people. These are also available on our website at www.rnhrd.nhs.uk.

For more information on our service, please contact Heather Hill on 01225 473425 at the Specialist Paediatric Chronic Fatigue/ME Service, Royal National Hospital for Rheumatic Diseases (NHS Foundation Trust), Upper Borough Walls, Bath BA1 1RL.

Specialist help for ME

CFS/NHS/PAEDIATRICS/BATH

Specialist help for ME

CFS/NHS/PAEDIATRICS/BATH

Managing Feelings and Emotions

Find the fun thingsWhen you feel down, you stop doing things, even those things that you used to like doing. Hobbies, interests, activities or visiting places you used to like going to (e.g. cinema) happen less often.

One of the first things to do is to start having fun again. Try making a list of all the fun things you used to do and enjoy.

Mike’s list looked like this:

stopped playing my guitar•don’t listen to music as much•don’t phone friends anymore – wait for •them to phone me

can’t seem to read anything•not been to town on Saturday afternoon •for a few months

You may find that you start doing things again but can’t do them for as long as you used to. Don’t worry – the trick is to do just a little bit more each time you do something. By adding just one more minute a day you will soon build up the time you are able to spend on your favourite activity. Keep reminding yourself that you are doing well, and remember that positive thinking zaps your negative thoughts.

Mike was feeling very down and so even just trying to do something he used to enjoy felt impossible. Because this first step can be so hard it is important that it is small.

Mike chose to start by playing his guitar for five minutes each day. Mike felt this was possible and by setting a very small target there was more chance that he would be successful. As soon as he started playing, Mike realised how much fun he used to have and was soon playing his guitar more often and for much longer.

Mike then moved on to the next target he set himself. This was to telephone one friend each week. Mike found that the more he did, the more he enjoyed himself and the more he wanted to do.

Absorbing activitiesThe first way of relaxing is to find something else to think about and do. Rather than listening to your negative thoughts or your anxious or angry feelings, try and do something else.

Some people find that they can switch these thoughts and feelings off by becoming totally absorbed in certain activities:

computer games, reading, watching •the TV/DVD, playing an instrument, listening to the radio or music may be helpful (but remember to count certain activities as ‘high energy’)

The more you concentrate on what you are doing the more you drown out any negative thoughts or feelings. At those times when you become aware that you are listening to your negative thoughts, try one of the activities you find helpful.

So for example,

instead of lying in bed listening to your •negative thoughts, put on your personal stereo and listen to some music

during the day that you feel worse than others. Each hour, write down on a piece of paper what you did and choose a number from 1 (feel really good) to 10 (feel really low) to rate your mood.

Lisa’s diary looked like this:

10.00 – in bed; Mood • 7

11.00 – in bed; Mood • 8

12.00 – sitting in my room, thinking; •Mood 10

1.00 – downstairs, had lunch with •mum; Mood 4

2.00 – in my bedroom listening to •music; Mood 4

3.00 – in my bedroom, sitting around; •Mood 9

This helped Lisa to see that the times she felt worse were when she was sitting in her room not doing anything. When she was downstairs with others or listening to music she felt better.

instead of •worrying whether your friend will call, read a magazine

Relaxation exerciseWhen we are angry, anxious or worried, our muscles become tight. As we relax, our muscles relax too. Practise using a relaxation CD to help you tense and relax different groups of muscles. Just enjoy the feeling of being completely relaxed.

Remember – you can’t be worried and relaxed at the same time.

Controlled breathingThere are times when you may suddenly notice that you have become anxious or wound up and need a quick way to relax and regain control. Controlled breathing is a quick method that can help. The idea is to concentrate on your breathing and this will help you to relax. You can use this method anywhere and people won’t even notice what you are doing!

Slowly draw in a deep breath, hold it for 5 seconds and then very slowly let it out. As you breathe in, breathe in nice, positive feelings. As your breathe out, breathe out all your worries and anxieties.

Doing this a few times will help you regain control of your body and help you feel calmer.

The more you practise, the easier you will find it to block out your negative feelings and the better you will feel.

Sometimes we get very anxious before we have to do something. This way of relaxing can help you prepare yourself so that you feel more relaxed before you face your problem or difficult situation.

Remember – the more you practise the more it will help.

My Relaxing PlaceWith this method you chill out by thinking about a special place that you find restful. Think about your dream place. It could be somewhere you have been or a pretend place. Imagine a picture of it and make the picture as real as you can and think about:

the noise of the waves crashing on the •beach or the sound of the wind blowing in the trees

the smell of the sea or the scent of pine •forests

the warm sun shining on your face or •the wind blowing gently in your hair

Physical exerciseWhen you are feeling physically stronger, taking a little exercise, like a short walk or a gentle swim, will help your body relax and get rid of the anxious feelings you may have had during the day. As you build up the length of time you can walk or swim, you will find your body feels better too and this will help you feel less anxious.

Check what you do and how you feel.

When people feel down, they stop doing things. They don’t go out so much and may sit around or stay in bed all day. A useful first step is to check what you are doing and to see if there are any times

Learn to relaxYou can control your anxious or angry feelings by learning to relax. You can do this in different ways, but remember:

There is no one way of •controlling your anxious or angry feelings

Different methods may be •useful at different times

Find out what works for you•