The Battle of Taking Supplements – Part 1

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s 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.

Our supplements are the things that give us the energy and ability to live our best life. They are also our literal food, just one 20g supplement is the equivalent of 4 large eggs or one steak meal! Supplements provide us with the essential amino acids to be able to grow, thrive and keeps our levels (somewhat) in check. Our parents are told this from our birth, and we are told this from as young as we can comprehend it. These supplements are a part of our lives, just as much as brushing our teeth or sleeping is, so why oh why are they so difficult to take and why is it so easy to forget to have them?!

For a while that answer was an easy one, they were (for me) just simply terrible! The flavour, smell and texture were just awful. They were difficult to make and awkward to carry around. Back in the days of Maximum when I was little, my parents had to carry around a tub of powder with a measured scoop, count out each scoop and then shake it with water. The amino acid powder would never dissolve enough so there were always horrific lumps. The flavour of the drink was so strong that by the time they watered it down enough for me to stomach it, I’d easily be drinking a litre of water per supplement, which really messed with my appetite.

Happily, for parents and patients alike, there have been many innovations in supplements since then. We now have a huge range to choose from, there are so many different brands, flavours and styles. A huge range of flavours away from the classic orange or blackcurrant, you can put them with fruit to make smoothies, and you can even put it in your food. And of course, if you want to avoid flavour and faff of liquids altogether you can have the PKU EASY Microtabs!

But despite this, it’s still feels like taking supplements can be a lot of work, especially as an adult PKU when you’re trying so hard to have a healthy/work life balance, as well as managing a diet and trying to fit the multiple amounts of drinks/powder/tablets that needs to be taken every day. It can be really hard to get routines in place and get the balances right, and thankfully I’m finally getting somewhere with making sure I get all my supplements in me. With all my experience so far, I thought I’d write about a few things I’ve noticed that have helped me, in hopes that it will help others.

Overcoming the mental hurdles

Sometimes the biggest battle I face with having supplements is the battle that takes place in my mind. With PKU, there are no doubt wonderful, exciting moments, but it can also be extremely hard. Even though food can look quite normal now thanks to advancements in medical food and vegan products, for me it felt like my supplements were the one thing that always made me stick out in a public place, social situation or at a meal. They can be a reminder of how different I truly am.

When I was younger, I didn’t want to admit I was different, I just wanted to ignore my diet, ignore taking my supplements, maybe with the hope that ignoring it would make it go away? But of course, it never did. Ignoring it just made me so much worse. Getting back into my diet I saw the physical and mental difference it had on me – it was a such a positive change; I knew being on diet was the best possible thing for me.

However, the supplement was still a challenge to take. It still for me served as that reminder of how different I am and how hard this diet was. This would mean that every supplement I had came with an emotional brick wall I had to tear down every time.

In the end I learned what I now realise is called ‘The Grey Rock Technique.’ I didn’t let myself put any emotions on whenever I had my supplement, I would just take it as if I was doing any other routine or chore, washing up, brushing my teeth, hoovering, just get it over and done with as quickly as possible, not allowing it to overtake my mind.

I actually learnt this from watching PKU kids at a Kent meet up, the kids just would sit there and down their drinks in one! I was so shocked knowing how long it took me, a proper ‘adult’, to take them! But that was definitely the trick, just forcing myself to sit down and take it as quickly as I could, not letting my brain have any time to think in between each mouthful. Then by the time I knew it the drink was finished! This really helped push me in getting the supplements down me. The problem however wasn’t just about getting them down me, it was also remembering to have the things amongst a busy life!

Listening to my body is something I’ve recently discovered. This week I had a day off, just to relax and play Xbox. I was sitting there thinking “gosh I’m hungry” but I just had breakfast and so I wasn’t really in the mood to eat, and then I thought to myself have I taken my supplement? I realised it had been hours since my last supplement. It’s also the same for other strong feelings such as when I’m feeling fidgety, low energy or tired for no apparent reason. I go through a check list in my head, when did I last have my supplement, when did I last drink water, when did I last eat? (If I want to be extra mindful, I also ask myself when did last go outside as working from home means I can be stuck inside for longer than I realise!)

Why I do this is so I connect having my supplement to the physical world. As said before the problem with PKU diet is that it is hard to notice the physical symptoms. We don’t instantly faint, throw up, get hives or anything if we don’t take our supplement.

So, I try to listen to my body in the normal everyday by going through that checklist. It’s also helpful for general mental checks, for example, why am I feeling tired, emotional, overwhelmed etc.? When did I last eat, drink, what was sleep like, when did I last go for a walk? It’s a very helpful tool to use to find the root of issues rather than relying on those emotions that can be confusing!