PKU and Motivation –The Plan

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 come a long way on my PKU journey, from being on a ‘half’ diet, eating rubbish, never weighing food and only having one or two substitutes a day, to now finding great substitutes that work for me so I can easily take them every day. There is a whole list of prescription food to choose from and more vegan alternatives than you can shake a stick at! I also have all the tools for my diet such as my food diary, all my Tupperware and of course, my trusty scales. As well as all of this, I now understand better all the reasons to stay on diet, that the best option for me is diet for life and how much difference being on diet makes to my physical, mental and emotional wellbeing.

So, with all that in mind, the question I’m asking myself today is why do I still struggle with motivating myself to stay on the diet? Why do I have a week where I can fill in my food diary perfectly, weigh every meal, cook myself great lunches but then a week later, all motivation seems to have disappeared and I can barely manage to weigh my breakfast? I find I’m having cup soups for lunch and have takeaways all the time (and no matter how “vegetarian” it might be, it doesn’t mean its low in protein!)

Why is this? Is it rebellion? Is it a lack of motivation? Is it feeling overwhelmed with how much work it takes to be on diet? Reflecting on this, I think the answer can be as simple as really sitting down with myself and understanding that the PKU diet is incredibly difficult. You must be precise, weighing every mouthful, dealing with the emotions that come with social eating and the frustrations that come with it. The diet is constant and there is really no such thing as a day off when it comes to living with PKU.

The next question I am asking then is what could I be doing better to keep myself going on those unmotivated weeks? As I know being on diet is what’s best for me physically, mentally and emotionally, I’m trying to think through the physical, mental and emotional changes I can make or improve upon. It’s the beginning of the month now, so I’m going to list a few ideas in this blog, give them a month and then come back to this at the end of the month with my feedback and thoughts!

1. Exercise - I know exercise really helps me, it makes me feel positive about myself, my body and I’ve been doing 2 different classes a week at my gym, High Intensity Interval Training (HIIT) and Abs (core) both of which are very enjoyable but are rather painful the next day! Exercise is also a great mood booster, and it really helps improve my sleep. I want to try and keep doing at least 2 exercise classes a week, with also one home yoga session for flexibility.

2. Bulk cooking – It’s something I’ve been meaning to experiment with for a while, so I’ve got meals not just for the weeks I enjoy cooking but also for the weeks I can’t motivate myself to cook, and therefore end up buying snacks. I was thinking that maybe on Saturday or Sunday I could bulk cook some free from protein meals such as PKU friendly shepherd’s pie, lasagne, curry etc. The only problem is whether my freezer is big enough for bulk meals!

3. Food diary - I do still have my fridge magnet food diary and I think to keep the motivation up to use it, I need to keep it as simple as possible. I will only use it for counting protein rather than all my food, just the digits, 1g, 0.5g, 0 etc. as its about getting back into the habit of observing, not putting any emotions against them of ‘doing bad vs doing well’.

4. Mental Health – I think my biggest struggle is that I tend to be really hard on myself when it comes to my diet, thinking I’m never going to be good enough but it’s important for me to remember this is a really overwhelming diet and as I’ve said before, it’s about the little wins, living day by day and that tomorrow is always a new day to try again. I want to start writing in a journal what I have done well this week, no matter how big or small.

5. Giving myself a break – on International PKU Day, we heard from Susan Waisbren, a Psychologist in PKU and I asked her the question “how do we find ways to give ourselves a break from a condition we can’t ever take a break from?” What she recommended was to focus on finding our identity outside of PKU. She said go through a list of questions asking ourselves ‘what’s my favourite colour, music, food etc.’ ‘what activities do I enjoy doing, what do I dream about?” and then at the end of all those questions finish the sentence ‘I am the kind of person who…’ so as well as doing my end of week reflection on how I’ve done in the week with regards to the diet, I also want to reflect on how I’ve done as a person, who I am and what I’ve enjoyed!

6. Treating myself - It’s important to remember that it’s okay to treat myself, as it’s better to have the occasional treat then being so constantly strict, I end up driving myself crazy and just have a big blow out, even if it’s a McDonald’s take away once a week or a meal out once a month where I don’t count what I’m eating.

7. Open up more – I know living with PKU can also be very lonely, so I really want to make opening up more about my diet a high priority, whether that’s with a friend, family member or my dietician. I know my friends and family care and they don’t find me annoying talking about PKU, they just want to help! I also want to write about this in my reflection notes of who I’ve spoken to in the week.

So, there is my plan for the month. I may have given myself a lot to do there but I’m going to make sure I take it all easy, to keep myself focused on the main points, not get lost in too many details and doing my reflection notes at the end of the week. As I said before, depending on how well this goes, I will do a follow up blog of how I’m finding it, what has worked so far and what hasn’t, so watch this space!


Date prepared: October 2021

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