Managing the PKU/Work/Life Balance
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.
Growing up through school and college, it tends to be an easier time for those of us who have PKU as our lovely parents do a lot of the organising for us. They organise our packed lunches, feed us dinners when we get home and remind us to have our substitutes (to name but a few of the amazing things they do!). However, when it comes to entering the world of work and living by ourselves, it can feel like our whole world goes upside down. There is so much to think of, whether it is hitting our work targets, ensuring we get up in good time to do the daily commute or trying to maintain a work/life balance like everyone else in the world. With all this going on, PKU can be an added complication that may, unfortunately, get left on the side lines.
But it does not need to be this way! We are fortunate to be living in 2021 when we have so many different resources literally right at our fingertips, with all the different ways that humans have learnt to organise themselves. We can watch YouTube videos, listen to podcasts or even read blogs. We should never be scared to try something new, especially when it comes to our diet. What is even more important than finding what works for us is also that realisation when something is not working for us, that it’s okay to just let it go and try something else; the next thing we may try may be the thing that makes all the difference in the world. Here are a few things that I have learnt from experimenting with organisation and what I have also learnt from my experiences of starting a new job.
I have tried Excel spreadsheets, fancy apps and just writing it down on paper but when it came to food diaries, I could never seem to find a format that worked for me. It was not until I saw someone using a large whiteboard in their kitchen that I was inspired! I am a very visual person so when I found on eBay a magnetic food diary and, most importantly, found some multi coloured whiteboard pens that I realised it meant I could stick it onto the side of my fridge and fill the diary in as I was physically putting the food into my lunch bag. Game changer!
A food diary can be hard to stick to and even harder to see the point of, but it was not until I started using it that I realised the point of a food diary is not to judge or reprimand me on what I have or should have not eaten, it is just there to observe. It’s there so I can see what has worked for me and I have done well with, or if I have not done as well as I would have liked, I can then see why. It helps me to make real, effective changes to improve my diet.
It goes without saying that when it comes to the PKU diet there is always so much to remember! Whether it is that all-important calculation to figure out how much protein there is in something per 100g, how much protein is in boiled potatoes compared to roast potatoes or that one recipe that was shared on Twitter two weeks ago but for the life of me I cannot seem to ever find again. I really recommend finding a way of highlighting these kinds of notes. For this I have been using magnetic whiteboard squares I also found on eBay. It makes it so much easier for when I am inspired to cook/try something new, the last thing I want to be doing is scrolling through my phone to find that kind of information.
I have realised it is important when starting a new job to make my line managers aware of my substitutes as soon as possible. I make them aware of what they are for and what time I may need take from my work to prepare and have it. This has been where the PKU Easy Microtabs have made such a difference in my work life, as there is no preparation needed, I just unscrew the cap, pour them out and take them, no measuring, shaking, spilling, bad smells or lumps. Also, to help remind myself to take them, I have found the silent alarms feature on my smart watch is of great help. It just vibrates on my wrist when it is time to take them, which is perfect as it does not disturb anyone I work with. There is also an alarm app on my computer at work, so if I have forgotten to charge my watch, I always have a backup.
As well as substitutes, I have found eating is a conversation that potentially needs to be had with line managers. I have had to have discussions about what the rules are on eating at my desk and whether allowances can be made for me to be able eat throughout the day, so I can work to the best of my ability. I find it is so important for me to have snacks throughout the day and a good meal at lunch as it really keeps my energy levels going and that my blood levels can be just as affected from having not enough food as having too much!
The running joke of living with PKU is how much Tupperware we use. However, it was not until I went back on the strict diet that I realised how important Tupperware is. I think on an average day I must now have at least 4-5 different pots in my lunch bag. Not only are these pots for my low protein/prescription snacks, it also means that if I make a large meal the night before, like pasta, I can keep the leftovers for lunch the next day. This then saves me precious time in the morning (especially if I have slept in!).
Being British, the tea break in the workplace is almost (if not more) important as the work that gets done! Yet, I have come to realise that unfortunately the odd ‘splash’ of milk in my tea does eventually start adding up. A great solution to this is the milk alternatives, coconut milk, almond milk etc. (please be aware some may need to be counted!) but the real winner for me is herbal and fruit tea. They are a great way to have a hot drink as not only are there hundreds of different flavours out there, it means I am drinking more water throughout the day and having less caffeine. They are also completely free of protein/sweeteners and they are just incredibly healthy for you! Herbal and fruit teas are one of those things I just cannot imagine life without now.
It is always really hard to bring up PKU with your work colleagues but is a conversation that does need to happen as before you know it, the work Christmas meal comes around and you get asked if you want the roast turkey or the beef for dinner! Please know, in my experience people are genuinely very lovely and interested in learning about PKU and even though they will have many questions I find a lot of the time you can turn it into a fun game of “guess what I can and can’t eat”. I love the reaction I get from people when I say that I cannot eat chocolate!
The more we are open about our PKU in the workplace, whether it is our substitutes or the food we eat, the more our workplace can help us. They can do the serious stuff like make sure that we get given the time we need to have our substitutes and do lovely things like make sure that on the Christmas meal we get extra helpings of vegetables, so we do not feel left out. It really is amazing how far my workplaces have gone to make me feel included.
It can seem really daunting to face all the PKU diet head on, to get ourselves and our diet organised. The trick I have found is to have fun with it, to go out of my way to find what works for you when organising. For me it is having colourful pens on a whiteboard, for you it could be a note pad with sparkly gel pens or an Alexa reminding you to take your substitutes while it plays your favourite song.
The biggest difference for me (apart from discovering herbal tea) has been the food diary, even though it was scary at first and it did reveal a few skeletons in my closet (how much protein is in crème of soups for example – yikes!). Nevertheless, it has really been worth the effort, as the food diary for me makes the difference between “maybe, it feels like I have I had a good week?” and knowing at the end of the week that I have had a great week and that boost really makes me feel like I am finally owning this PKU and work-life balance!