Living with Phenylketonuria can be challenging at the best of times.
Planning meals. Weighing food. Counting protein. Blood tests.
I think we can all agree, it’s not the best of times right now.
I feel like we’re currently living in a bit of a paradox. At a time where we need to stay cool, calm and collected, we’re instead distracted, panicked and overwhelmed.
Which is totally understandable.
However, what I’ve come to learn in my 30 years of living with PKU, is that the success of my dietary management hinges on my ability to stay level-headed and make the right decisions.
A challenge considering our current climate.
After a bit of reflection, I’ve brought together a few ways that are helping me navigate this situation. I hope by sharing them, they may alleviate some of your own uneasiness and help us get through this together.
Define a new routine. With significant changes to my usual work/life routine, home has now become the place where I work and relax. Where I exercise but also where food is available to me 24/7. Definitely dangerous.
The disruption to my usual routine blurred the cues and structure I had set for myself in order to manage my low protein diet.
Something I have found super helpful is to build a new daily routine. I see this as an opportunity to set a healthier routine. I wake up at a regular time and an added benefit of no longer needing to commute to work is that I can fit in an hour-long morning walk.
I eat at regular times and drink formula when I usually would. To stop myself grazing I plan most of my meals for the week, along with snacks too. I keep my snacks fun and something to look forward to. A mix of healthy foods like coconut yoghurt with fruit and treats like a mini Easter egg.
I have kept to my usual work hours, make sure I sleep at regular times and of course fit in some relaxation.
Eat well. All this time at home has sparked my creativity. I have set myself a challenge to try a new recipe each week. I generally cook a large portion on the weekend, and leftovers serve as great low protein option I can nibble on when I find myself drawing open the fridge door. So far I have made cauliflower fritters, cauliflower fried rice, ANZAC cookies and a hominy vegetable soup. My favourite recipe I have discovered is this coconut sago dessert.
Lychee, Mango and Coconut Sago
- Place 100g of tapioca pearls, 400ml coconut cream, 1/8 tsp vanilla essence, 1 tsp lime juice and 1 ½ cups (375ml) water in a large saucepan. Stir to combine.
- Set aside for 30 minutes to soak.
- Bring the tapioca mixture to a simmer.
- Cook on low until tapioca pearls turn transparent. Approximately 15 minutes. Stir occasionally.
- Remove saucepan from heat. Add in 1/8 cup of sugar and ¼ tsp of salt and stir through. Allow to cool.
- In a small pan, toast 1 tbsp of coconut flakes.
- Serve tapioca mixture in cups topped with toasted coconut flakes, halved lycee and mango pieces. Drizzle with honey or maple syrup.
Keep connected. As well as making sure you’re ok, don’t underestimate the impact little acts of kindness can have on another person. Put together a care package for an elderly relative. Leave a note under a friend’s door. Bake your favourite treat for a special person or call to check in with a friend.
Along with reaching out to support others, maintaining social connections for your own mental wellbeing is important. Has anyone else jumped on the Houseparty app? My friends and I have been hosting mass video calls, screaming and laughing through our phones playing trivia, quick draw and headsup. We have such a great time, taking us away from focusing on the situation we’re in.
At work, we have been scheduling Zoom meetings just to ‘chat’. Nothing work related. Purely a time dedicated to those conversations you have on a trip to the kitchen for your morning coffee.
My sister also celebrated her birthday in early April. While we would usually get the extended family together for a delicious dinner followed by cake, this year it looked a little different. A video call with the family, including two extremely cute and excited screen-hogging niece and nephews made for an interesting birthday celebration. While our ‘Happy Birthday’ singing may have been a little off (that internet lag hit hard!), it was a birthday celebration to remember. From all parts of Sydney we were connected and having a great time.
Try a video call with family or friends. Reach out to those you care for and love, your support group, for your own wellbeing and selfcare.
Do energising activities. Being at home can become all consuming, with no boundaries between school, home or work. To break this up I have loved being out in nature. Whether it be a walk in my local park alone or with a friend, or a bike ride. Rediscover boardgames. Work on your garden or play a game of soccer in your backyard. Essentially, do more of the things that give you energy, to balance the drain of being at home.
Be kind to yourself. And on days where all this just doesn’t work out, know that’s okay. We’re in unprecedented times, dealing with some pretty distressing situations. It is important to remember that one size does not fit all when it comes to looking after ourselves, so do what you feel is best for you.
