It’s important to note that everyone develops at different stages and some of these tips and suggestions may be more relevant at different times as you move through your teenage years.
- Aim to follow a varied and colourful low protein diet, while taking your protein substitute as recommended by your metabolic team to help get the right nourishment. Your diet works for both your body and mind – when you take your protein substitute and keep to a low protein diet this can make a marked difference to your energy, concentration and mood.
- Be aware of your food choices and what affects them – sometimes your thoughts and feelings can affect how you eat and view yourself. If this applies to you, then you might find that keeping a “food and symptom” diary can help you pinpoint the effects that your feelings have on your food choices.
- Keep active - physical activity is so important to feel good. Choose activities you enjoy and can do with your friends, so it doesn’t feel like a chore – it’s meant to be enjoyable! Regular exercise is great for your body and your mind, it boosts your mood, gives you more energy as well as relieving stress and anxiety and increases the hormones needed to feel good! Being active can also be helpful to break up long periods of sitting and studying and help energise you.
- Spend time with your family and friends – having good relationships with those that you love and care for is important. Keeping in touch with your friends with PKU is also a good idea as they will probably be going through similar situations and you can share experiences, knowing that they’ll understand. PKU social media groups can help with meeting others with PKU and keeping in touch if your friends don’t live close by.
- Keep up to date with PKU – by attending your appointments with your metabolic team, and joining the Metabolic Dietary Disorders Association (MDDA), you will be able to keep up to date on; the latest protein substitutes, newly available low protein foods, low protein diet updates, dietary (and other) treatment/management developments, and much more.
- Beware of alcohol and other drugs – Learning about the effects of alcohol is part of growing up. Drinking too much can have negative effects on your health and wellbeing. Be aware that taking illicit drugs might affect your mental health.
- Tune into your eating, consider “Mindful Eating” – take your time to eat, and limit all other distractions for a short while I.e. try putting your phone in your pocket for 10 minutes to get the most out of your meal by limiting interference. There are apps available for download to support mindfulness. I.e. “Calm” and “Aura”.
- Keep in touch with your local metabolic team as they are the main source of information and support with managing your PKU. Doing this independently of your parents and caregivers can feel daunting at first but is an important part of taking responsibility for yourself. Plus, there might be things that you want to ask the team that you don’t want others, including your parents, to know.
- Support others – volunteer your time and do something nice for someone. Sharing your experiences with PKU is a great way to support others.
- Try something new – this can help you feel good about yourself and give you a sense of achievement, e.g. learn to cook your favourite low protein meal, and then, cook this for all of your friends!
- Ensure you get plenty of sleep – lots of sleep significantly helps with both the wellbeing of your body and mind. Too little sleep can make you grumpy, snappy and effect your concentration span in school and college, which may impact relationships and make learning harder.
Always try to remember to have fun, accept who you are and don’t compare yourself to others – we’re all unique, so remember to also accept others for who they are.
If you are worried about difficult feelings and thoughts, talking to someone such as an adult you trust and feel comfortable with, can make a big difference and is helpful in getting things into perspective. Just sharing your concerns with someone you trust, for example, your parents, family members, GP and metabolic team, may help lighten the load.
Not sure who to talk to? If you’d rather not chat “face-to-face", the websites listed below may provide the information you seek, and offer the support you need.
Headspace is an Australian Youth Foundation specialising in information and support regarding mental health and wellbeing.
Kids help line is a free, confidential, 24/7 online and phone counselling service for young people (aged 5-25 years).
MDDA is a national wide group which supports and represents individuals and affected by PKU (and other IEM) whereby treatment involves a medically controlled diet.
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