Resources you might find useful

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Resources You Might Find Useful (Rheumatology) PIAG 55 (262kB)

Introduction

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, managing symptoms, needing to take medication and perhaps being 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 that children, young people and their families sometimes find helpful. Perhaps a member of the team has offered you this leaflet because they thought it might help. What do you think?

Sometimes, children and young people tell us that they would like to meet us in person to have a space away from the team, maybe even away from family, to talk about what it is like to have a health condition. The Rheumatology team would be happy to chat with you about this if you would like.

On this leaflet, 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.

If you feel that it would be helpful to discuss any of your needs (and/or any parental concerns) further, please contact the Rheumatology team in the first instance, who can discuss this with us should you agree to this.

Helpful websites

Children and young people can struggle with different things, at different times. These web-sites have advice and techniques about lots of things, including managing feelings of low mood, anger, anxiety, and self-esteem for example:

• http://www.getselfhelp.co.uk/
• https://www.camhs-resources.co.uk/
• http://www.moodjuice.scot.nhs.uk/
• http://www.mymind.org.uk/thebox/

Breathing and relaxation exercises

It can be difficult to know how to manage tricky thoughts and feelings if they show up for you.

Breathing exercises can help to reset what might be going on inside our bodies, which can help to bring about a sense of calmness. The internet has lots of audio and video clips….maybe try out the ones ones below…

• Bubble Breathing – https://www.youtube.com/watch?v=5DqTuWve9t8
• Mini-meditation – https://www.youtube.com/watch?v=cEqZthCaMpo
• Belly Breathing – https://www.youtube.com/watch?v=sn_2GY1gTyo
• Muscle Relaxation – https://www.youtube.com/watch?v=JPrKsWgI66g

Sleep and feeling tired

For advice on chronic pain and fatigue, try reading this online leaflet – http://www.getselfhelp.co.uk/chronicfp.htm

This includes advice on pacing, goal setting and also talks about the role of our thoughts and feelings.

The Head Space website (https://www.headspace.com/) offers you the ability to download an app to try some mindfulness exercises which might also help with sleeping and feeling
calm.

For more sleep tips, try https://www.mymind.org.uk/media/1488/mmb006_chillax.pdf or https://youngminds.org.uk/find-help/feelings-and-symptoms/sleep-problems/

Feeling worried or anxious?

It is not uncommon to experience feelings of worry or anxiety. This could be linked to how you feel about your health condition, or might be caused by a number of other things…maybe school, your friends, or home life.

To understand more on axiety, and other tricky feelings, try this link; https://youngminds.org.uk/find-help/conditions/anxiety/

Don’t forget the ‘get self-help’ website for advice around a range of difficulties as well.

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. Find out more at https://www.changingfaces.org.uk/get-support/self-help-guides/children-young-people

Pain

When you have a health condition, it is not uncommon to experience pain. We have found a you tube video explaining about pain with ideas for ways to manage this;
https://www.youtube.com/watch?v=C_3phB93rvI

For information, tips and skills to help you understand and manage chronic pain, go to https://www.parksmed.co.uk/wp-content/uploads/2013/09/Pain-Toolkit-for-teenagers.pdf

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 watch this one clip, https://www.youtube.com/watch?v=VYht-guymF4, and imagine that ‘Brian’ is playing the part of something you struggle with; pain, fatigue or anxiety for example.

This leaflet only gives general information. You must always discuss the individual treatment of your child with the appropriate member of staff. Do not rely on this leaflet alone for information about your child’s treatment.

This information can be made available in other languages and formats if requested.

PIAG: 055