Mental Health and Wellbeing

The World Health Organisation (WHO) has defines health as a state of complete physical, mental and social wellbeing and not simply the absence of disease or illness.

Our physical and mental health and wellbeing are interlinked – one does not function optimally without the other.

Wellbeing is characterised by:

• A general feeling of positivity, enjoyment, contentment
• Confidence and the ability to engage with the world
• An ability to cope with difficult situations

Good mental health is characterised by:

• The ability to learn and experience
• Managing good and bad feelings, thoughts and situations
• Forming and maintaining meaningful relationships with others
• Building resilience- the ability to cope with life’s ups and downs and adapt to change and uncertainty.

If your mental wellbeing stays low over long periods of time, you may be more likely to develop a mental health problem. Throughout life, we can all experience times of feeling down, worried or stressed, which may be triggered by different situations e.g. experiencing a personal bereavement, unemployment, money problems, under pressure at work, relationship problems or parenting. Also, the additional responsibility of following a PKU diet can for some cause added stress and anxiety.

In such circumstances, it is normal for our wellbeing to be affected however we usually recover after a brief period of time. If these difficulties persist, or if support is not optimal, mental health problems may occur, e.g. anxiety and depression. Having a long-term condition such as PKU may make you more vulnerable to experiencing mental health problems.

In recent years the message for PKU management is Diet for Life which aims to minimise symptoms of ‘brain fog’, irritability, poor concentration and tiredness which in turn helps promote positive wellbeing. If you are experiencing any of these, consider speaking to your metabolic team about improving your current low protein diet or if you are not currently following a low protein diet it’s worth considering returning to diet with your team. Better physical health, a healthier lifestyle and in turn a better quality of life can help you manage your PKU.

There are 5 basic steps recommended by the New Economic Foundation, which are actions based on broad ideas that can help you think about what to do to improve your wellbeing.

1. Connect: Feeling close to and valued by others is a basic human need and one that is essential to function healthily in society.
   • Ensure you spend time with those around you including your family, friends, colleagues, neighbours and your local community. Think of these relationships as essential to your life and spend time fostering and nurturing them.
   • Get in touch with the PKU community e.g. join a social media group, attend local PKU meetings and events
   • Join a new group or look for a new hobby


2. Be Active: Regular physical activity can help lower levels of anxiety and depression across different life stages. Keeping active can play a key part in slowing down cognitive decline. Exercise can help with attention and concentration level as well as increasing motivation and energy levels and inducing wellbeing.
   • Try any physical activity - keep exercise and physical activity fun and enjoyable!
   • Spend time outside - go for a walk or run, cycle, or get out into your garden!
   • Choose to take the stairs instead of a lift, take a walk during your lunchbreak to have a break from the working environment.
   • Track your steps to aim to increase them every day!
   • Completing daily tasks faster can be included when thinking about improving your physical activity levels.


3. Take Notice: Stopping to take notice and paying more attention to the present moment directly impacts on mental wellbeing and health. Becoming aware of your surroundings and being present in the moment can allow you to pay attention to your mental health and wellbeing and in turn help you to feel good. Being present can help you become more aware of your thoughts, feelings and what is going on around you and how you manage. It can help you to accept the world around you including living a life with PKU. Some people refer to this as ‘Mindfulness’.
   • Remind yourself to stop and pause and be curious about what is around you – what can you see, feel, smell, hear, touch or taste?
   • Try mindfulness exercises, e.g. meditation or yoga or downloading a mindfulness app can get you started.
   • Look for the enjoyment in everyday life and reflect on how that makes you feel. Reflecting on your experiences will help you appreciate what matters to you e.g. spending time with loved ones, having time to yourself, writing down things that make you happy.


4. Keep Learning: Learning new skills and gaining new knowledge is important for wellbeing as it fills you with a sense of achievement and accomplishment.
   • Sign up for a course, take on a different responsibility or learn a new skill, such as a basic foreign language class, learning to play an instrument or improving your low protein cooking skills.
   • Keep up to date with developments in PKU e.g. new protein substitutes, new low protein foods, phe exchange updates etc.
   • Set yourself small challenges that you know you will enjoy. Learning new things will help make you feel more confident and is a great way of having fun. Try to not be afraid of attempting something new or revisiting old interests.


5. Give: Giving can help you feel good. Helping out and supporting others can make you feel needed and valued and can boost your self-esteem. Small or big acts of kindness, seeing your happiness linked to the wider community can be incredibly rewarding and create connections with people around you.
   • Do something nice for a stranger
   • Volunteer your time to support others with PKU e.g. share your experiences
   • Go out of your way to thank people who have helped you

• Aim to follow a healthy low protein diet, taking your protein substitute as recommended by your metabolic team.
• Become aware of your food choices and what affects them – your thoughts and feelings affect how you eat and view yourself
• Tune into activities, maybe try “Mindful Eating” – take time to eat without distraction, engage all your senses not just taste and enjoy this time!
• Plan ahead taking active steps to support your organisational skills e.g. by batch cooking, staying on top of your prescriptions, keeping a record of your phe levels - apps and diaries can help
• Engage with the PKU community where possible, e.g. National Society of Phenylketonuria (NSPKU), social media groups, PKU events
• Keep in touch with or get back in touch with your local metabolic team as they are an invaluable source of advice and support with managing your PKU
• Ensure you get enough sleep and exercise.
• Be aware that drugs and alcohol can have a negative effect on our wellbeing.
• Nourish your social life - do things you enjoy

If you are worried about your mental health or concerned that you might have a mental health problem, talk to your GP and/or metabolic team as soon as possible so they can advise you on suitable help and treatment as required.