CG003 Mental Wellbeing

Mental wellbeing is highly topical at the moment, especially in the UK, and rightly so, it affects many individuals and families living with rare conditions. Our NHS has developed a useful guide that you may like to explore. It begins with the evidence based Five Steps to Mental Wellbeing, many of these these can be expanded to include physical wellbeing. We explore some of these ideas below:

1. Connect

Connecting with others is important to many of us through family, friends, the abundance of Facebook groups and other social media are testament to that. The Pompe Support Network draws from some of those discussions to provide ideas and proposals for projects that will lead to useful publications, events or facilities. It is important to us that everyone in the community has a voice and is able contribute to our productions.

2. Be Active
Being physically active is always beneficial, but so is being active in many aspects of life. Hobbies, group activities and employment that you enjoy and make part of your life can all bring great sense of achievement and contribute greatly to mental wellbeing.

3. Keep Learning
We all benefit from educating ourselves in all sorts of areas, including the University of Life; it gives us a sense of achievement and new confidence. Being part of the Pompe Support Network can help us all learn about living with Pompe, information on research into new treatments, and introduce ways to improve physical and emotional wellbeing.

The Network will also communicate how learning is helping others in the community, through, for example, learning a musical instrument or singing a new song.

4. Give to others
We see the generosity of the human spirit constantly through connections within the Pompe community. A simple “thank you” often benefits both the giver and the receiver. Giving advice to the community can have immeasurable significance through the connection with others, the exchange of knowledge, and the pleasure of giving.

Making charitable donations will also create ripples of pleasure throughout the community!

5. Be mindful
The NHS Website sums up mindfulness pretty well, describing it as:

“Paying more attention to the present moment – to your own thoughts and feelings, and to the world around you.”

We would like to explore all the ways people find their inner-peace, through mindfulness, meditation, yoga, gong therapy, music therapy, or just staring out of the window.

Facebook group for Mental Wellbeing
To join the Facebook group, you must first join the Pompe Support Network