Hi, my name is Helen Scally, I live in West Yorkshire and I have 3 children. My eldest, Kian (17) has PKU and my other 2 children Erin (15) & Nate (8) are non-PKU. I work part-time in a school as a Special Educational Needs Administrator and I am also the Mental Health and Wellbeing Lead for 11 Primary and Secondary academies.
Effects of Coronavirus on families with PKU
This is my first blog post and I thought I’d start with a subject that everyone seems to be talking about right now and that’s Mental Health and Wellbeing. 2020 was a very unusual year and mental health has very much been in the limelight as we have all had to cope with situations that we have never found ourselves in before. The disruption in our daily lives has caused many people to suffer with anxiety, increased stress levels and depression. People with PKU and their families also had extra stress including; would we still be able to get the specialist protein substitutes and low protein food? Can we still speak to our dietitian? Will the labs still be running in order to process phenylalanine levels? Will the people stockpiling foods, who have never eaten fruit before in their lives, please leave it so that we can actually buy stuff that our kids can eat?!
Going into lockdown in March sent the whole country pretty loopy and whilst most people were stockpiling toilet roll, I was trying to find a supermarket that had low protein cheese, frozen French fries and butter in stock!! Kian has a pretty limited amount of foods that he likes to eat, so I have to admit that walking into the supermarket at the beginning of lockdown and not being able to buy the few things that he likes to eat sent my stress levels a little high – I had my family on alert to grab things whenever they were out.
Good mental health is important regardless of whether you or a family member has PKU. Your mental health influences how you think, feel and behave in daily life. It also affects your ability to cope with stress, overcome challenges, build relationships, and recover from life’s setbacks and hardships.
The Stress Bucket
There is a really good theory called ‘The Stress Bucket’ which was developed by Brabban and Turkington (2002). Imagine you are carrying around a bucket and all the things that happen in your life, all the challenges and stress, add water into the bucket; these might be financial worries, health issues, changes that are happening, anxiety, relationship problems etc. Your bucket fills up quite easily with all these different types of stress flowing in and it’s important that you find activities to help lessen the load. You might find that talking to friends helps to relieve some of the load or going for a walk or having a bath; we all have different ways of coping and the main thing is to realise that your bucket is getting full and that you need to do something before it overflows.
Hints and Tips to Improve Your Mental Health and Wellbeing
You may have seen some of the poster campaigns that have been running throughout this last year, advertising the ‘5 Ways to Wellbeing’. Evidence suggests that there are 5 steps that you can take to improve your Mental Health and Wellbeing, these are:
1. Connecting with other people – feeling close and connected with other people can uplift your mood and ease your worries. It helps you to build a sense of belonging and self-worth and gives you an opportunity to share positive experiences with others. I feel this is especially important for people with PKU and parents of a PKU child. I know that I have benefitted massively over the years because I have a friend who also has children with PKU.
2. Be physically active – being active releases stress and tension, burns off excess energy, makes us feel happier by releasing endorphins and boosts our immune system. This doesn’t need to involve a hardcore gym session or a 10 mile run. It can be going for a gentle walk or simply turning up the music and having a dance around the room.
3. Pay attention to the present moment – this is also known as mindfulness. Our lives are often so busy with thousands of thoughts every day that we don’t notice the things going on around us. Taking a few minutes out each day to take notice, can make you feel more present and less stressed and overwhelmed.
4. Learn new skills – this boosts confidence, helps you to achieve new goals, can help you to connect with others and can keep you occupied if you need a distraction. This could involve; learning to cook a new low protein food, learning a TikTok dance routine or maybe learning some DIY skills.
5. Give to others – this doesn’t have to be presents or money, giving people your time is much more important. Doing things for others without being asked, can make you feel happy – and them too!
If you can find a way to incorporate at least some of these into your daily life, then you’ll find that your stress bucket becomes easier to carry around and hopefully, life will start to feel a little less crazy.
It’s said that an average of one in ten thousand babies are born with the rare genetic condition, phenylketonuria (PKU). That’s the equivalent of just nine people in a full capacity Wembley crowd. Yet, despite extreme rarity, and against huge odds, my newly wedded wife, Nichola, and I - both diagnosed at birth - recently celebrated an ‘all PKU’ marriage. Now, with our big day existing only in our memories, these are our tips for organising a PKU wedding:
