PKU and Motivation –The end of my journey

Clair Willcocks


Hello everyone, my name is Clair Willcocks, I am 27 years old and I am Galen Medical Nutrition’s new PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

I’ve now done two blogs of how I’ve been managing the battles of motivation I have when it comes to staying on my diet and even though this is my final blog, it’s of course nowhere near the end of the journey, when it comes to managing my diet. However, these blogs have been a great way to reflect on how I have done and what has really helped me.

1. Exercise - I still really enjoy going to the gym, I go straight after work, so it means by the time I get home I’m knackered. This means as well as feeling fitter, I am able to sleep a lot better. Even though I was struggling with feeling hungry after the gym, I’ve recently discovered a good post-gym snack in bananas, they keep my energy up, so I have handle then also having to cook a meal.

Our local swimming pool has finally opened after refurbishments made during the lockdown, so my husband and I have been going swimming together once a week. We go late in the evening so it’s not very busy and we don’t go any longer than an hour. Swimming is such great exercise, whether we are doing proper lengths or just mucking about in the water. It’s also been a really nice way to spend time together, away from screens, scrolling through Netflix and the general stress of the day.

2. Bulk cooking – This has still been going well. As well as doing my spaghetti as previously mentioned, I’ve also been making jack fruit curry with veg and servings of low protein rice. Going between these two options is giving me great variety in my bulk cooked meals. It’s been perfect for those days when I can’t even begin to think about what I want for lunch/dinner, when I just want to grab something and go. I will have to do a blog going into more detail about my bulk cooking adventures in the future!

3. Food diary - It was still too overwhelming keeping up a weekly food diary. I found that especially as I’m going to work, I’m generally having the same things every day, so it seemed a bit pointless filling in the same meals over and over again when the main focus needs to be on the exchanges. So instead, I’ve made my food diary even simpler by just making it into a daily exchange counter. I put how many exchanges I had for breakfast, lunch, dinner, and pudding and then any snacks in-between I just include in those four categories. 

4. Mental Health – Over these past months, I’ve really learnt how to ‘focus on myself’, and basically learning to be kinder to myself. I had my metabolic appointment via Teams and when I was explaining the past few months to my dietician, she seemed really impressed with what I was doing! It was a great boost to remind me that despite the occasional lack of motivation and take away, overall, I am doing a good job and I need to remember that. Even if I have bad days, they don’t define me, and tomorrow is always a new day to try again. 

5. Treating myself - It really hasn’t been working trying to ‘only’ have one fast food meal a week, as one does always soon lead to more. Sometimes the best thing I can do is just tell myself no, to not even go there, so I’ve been trying to learn to say no to myself. If I really do want to treat myself or if I’m craving McDonald’s or a big bag of crisps, what I have found helpful is treating myself with sugar, so for example, having a pack of vegan sweets or full fat coke. My dentist may not be too happy and it’s still not the healthiest option, it at least scratches the itch of a craving and it’s still better than have 5 exchanges worth of large chips from McDonalds!

6. Open up more – This is the thing I am most proud of myself for achieving, I really think I have made sure to make an effort to open up about my diet with my loved ones, whether it’s going to my friends and family for advice, to excitedly share my latest creation, newest find or for them to just lend a sympathetic ear. I don’t need to keep this all to myself, they do want to hear, and they want to be there for me with this aspect of my life as they would want to for any other part of my life.

As said at the beginning, this is not the end of my journey, I still struggle with the diet and being honest, I may always struggle with it, because no matter how organised I am or how many vegan options there are available, for now diet for life is the only way to treat PKU in the UK and the diet still is so difficult.

However even though I can’t change my diet, what I can change is how I choose deal with it, by making sure to ask for help if I’m feeling overwhelmed, always being open to trying new ways to manage my diet, whether it’s bulked cooked meals or finding different ways to treat myself and if something doesn’t work, to just keep trying until I find something that does.

Always reminding myself what makes me, me, away from the label of ‘PKU’, what keeps me going generally in life, such as exercise, a day out with friends or a pack of Haribo Giant Strawbs. Overall it’s about making sure to focus on all the things I am doing well with not only the things I struggle with, and when I do, I ask for help, not struggle alone.


Date of preparation: November 2021

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