Living with a health condition can cause lots of different feelings, such as feeling sad, angry or worried. We hear from young people that coming to hospital appointments, sometimes needing to take medication and perhaps getting admitted to hospital, are all tricky things to manage. We want you to know that you’re not on your own in feeling this way.
We’ve put together some downloads and links which some children, young people and their families might find helpful. On this page, there are links to lots of different topics.
You might feel that some of them are not going to be useful to you, this is OK, maybe scroll through until you find something which might be.
Sometimes, children and young people tell us that they would like to meet someone in person to have a space away from the team, maybe even away from family, to talk about what it is like to have chronic pain.
If you feel that it would be helpful to discuss any of your needs (and/or any parental concerns) further, please contact the chronic pain team in the first instance, who can discuss this with us should you agree to this.
Pain
We meet lots of children and young people who experience chronic pain. We have found some videos explaining chronic pain, along with ideas for ways to help manage this; https://www.youtube.com/watch?v=C_3phB93rvI or search you-tube for ‘Understanding Pain in less than 5 minutes, and what to do about it!’
We like this cartoon explaining the need for the different approaches to managing pain;
http://www.theacpa.org/condition/a-car-with-four-flat-tires
www.paintoolkit.org is a website with information, tips and skills, to help you understand and manage chronic pain. It explains ideas of pacing, planning, setting goals, relaxation, stretching and exercise.
By following this link, you can find a young person friendly booklet; https://www.parksmed.co.uk/wpcontent/uploads/2013/09/Pain-Toolkit-forteenagers.pdf
Self-help websites
These web-sites cover lots of different topics; for example about low mood, self-esteem, feelings of anger and managing anxiety.
Anxiety
Are you struggling with feelings of anxiety, triggered by your health condition or by other things in general (e.g. school, family or friends)? For ideas on how to try and manage this, try; http://youth.anxietybc.com/
Don’t forget the ‘get self-help’ website for advice managing anxiety as well; https://www.getselfhelp.co.uk/docs/AnxietySelfHelp.pdf
Fatigue
We know that it is really common to experience tiredness, or fatigue, when living with chronic pain. For advice on pacing and goal setting to begin to help manage this, try this resource; http://www.getselfhelp.co.uk/chronicfp.htm
If you would like to try a sleep relaxation podcast, try www.mymind.org.uk/thebox/ and click on “chillax relaxation”.
Appearance
Does your health condition affect your appearance? If this is something which
you would like support with, the changing faces website has some downloads you might find helpful. There are some around building confidence and feeling different you might like to look at https://www.changingfaces.org.uk/getsupport/self-help-guides/childrenyoung-people
Podcasts
The websites below contain podcasts you can download for free alongside other information you might find helpful. Scroll down to find some podcasts you
could try: https://www.mentalhealth.org.uk/podcasts-and-videos
Mindfulness
In the chronic pain team, we really like mindfulness. Mindfulness is a way of learning
to experience the present moment, rather than being carried away to the past or the
future.
https://www.headspace.com/ is a free app where you can learn some mindfulness
exercises. It also has some animated characters to help you learn.
We also like the app called ‘Calm’. This also teaches skills to help feel calm, and has nice
techniques to help slow down your breathing; https://www.calm.com/
The ‘Unwelcome Party Guest’
Sometimes, young people tell us that no matter what they might be struggling
with, they wish that it would just ‘go away’. Below, is a video clip all about an
unwelcome guest at a party. Maybe play this clip, and imagine that ‘Brian’ is
playing the part of something you struggle with; pain, fatigue or anxiety for
example. Maybe see if this could be a different way of you thinking about your
difficulty; https://www.youtube.com/watch?v=VYht-guymF4
Books for Children and Young People
‘Be the Boss of Your Pain’, by Timothy Culbert and Rebecca Kajander. This is a book on pain management for children aged 8 years and over. It explains the link between the body, the mind and pain. It may help your child to understand how pain can affect their mood, emotions, sleep and appetite. It contains practical skills to help your child try to feel more in control of pain without always relying on medicines for example.
Complex Regional Pain Syndrome (CRPS) Explained: By Teenagers for Teenagers,
by GR Lauder and R Massey. This book provides clear information for teenagers who
develop CRPS presented in a way for teenagers to understand. It explains the importance of the team approach, and the journey from diagnosis, to team management, to recovery. More information about the book can be found on its website www.crpsexplainedforteenagers.com
Imagine a Rainbow: A Childs Guide for Soothing Pain, by BS Miles and N Wong. An illustrated book to introduce younger children (aimed at 4-8 years old) to using their
imaginations to cope with pain. It includes a section to explain the technique of imagery and deep breathing for parents, and how to use these with your child.
GrrrOUCH! Pain is like a Grouchy Bear, by C Morgan and C Beshara. An illustrated book aimed for 6-10 year olds, presents ideas to help cope with pain using rhythm and rhyme. This book encourages children to communicate their feelings, and explore and describe pain with words and images.
Books for Parents (and Older Teens)
Conquering your Childs Chronic Pain: A Paediatricians Guide to Reclaiming a Normal
Childhood, by LK Zelter and C Blackett-Schlank. Written by a children’s doctor about the causes and repercussions of chronic pain in children on both the child and family. It discusses a multidisciplinary approach with suggestions including yoga, hypnotherapy, acupuncture, relaxation techniques and medications.
Relieve Your Child’s Chronic Pain: A Doctors Program for Easing Headaches; Abdominal
Pain; Fibromyagia; Juvenile Rheumatoid Arthritis and More, by E J Krane. Written by an American paediatric chronic pain doctor aimed at parents. Part 1 gives explanations about the common types of chronic pain that affect children and how it differs from adult chronic pain. Part 2 focuses on treatment strategies, including physical and mind-body techniques. It gives tips on how you can adapt these to use at home, and how to cope
with the impact and the emotions chronic pain may evoke for a child and family. Part 3
brings all sections together, with questions frequently asked by parents and success stories.
Managing Your Child’s Chronic Pain, by TM Palermo and EF Law. Written by paediatric psychologists, this book supports parents to learn how to help their child and family when they have a child experiencing persistent pain. This book discusses deep breathing, relaxation strategies and sleep interventions to help parents support their children. Contains guidance to help prevent relapse, maintain progress and prevent future problems with pain and disability.