Photo by Jonathan Pendleton on Unsplash

Staying motivated with PKU isn’t easy. Setbacks can be tempting sometimes, but in our experience working with people living with PKU we’ve found there are a few things you can do to help make it easier to stay on track.

1. Make a planning calendar.

Even though planning can be hard at first, once you’ve got one in place it’s easier to keep your motivation up and to stay on track. It helps make living with PKU more predictable. Even just a cheap printed calendar where you can plan meals over time, mark dates when you know you’ll be eating out, reminders to carry the essentials with you on travel days (such as spare formula, a small snack and low protein milk or CoffeeMate). It’ll make life a lot easier, which in turn makes it easier to stay on track, feel more balanced and feel way better.

2. Find your why.

Sometimes holding in mind what’s most important to you in life can provide you with powerful motivation to stay balanced. We call it, finding your why. Maybe it’s your career, being mentally in one piece for loved ones or maybe it’s your children. One person’s why may not be right for another, and that’s okay. But find what’s important to YOU and then lean into it. Maybe even write it down atop your planning calendar so you see it every day. Why not?

3. Find your tribe.

Surround yourself with supportive people. Be it at home with your partner, friends and family or online. Events are fantastic for fostering connections with others who “get it” too. Here’s a tip: on Facebook search “PKU” in the search bar at the top of the page. At the top of the results page will be various tabs – click on “People” and then you’ll notice on the left hand column is a geography filter. Click on your town or zip code and voila! A list of people in your area who have an interest in PKU will be displayed. Reach out to a few, share stories and recipes. Help each other achieve metabolic balance and feel better.

4. Write it all down.

Information can also be very motivating. Write down your PHE levels, food, how you feel physically and mentally on a daily basis. It’s amazing how you will start to see patterns and then how those realizations help to motivate and shape your planning. If you start a planning calendar, you could also just write down your numbers on each date. Or even a spreadsheet. Either way, it’s about generating feedback and learning from it.

5. Be kind to yourself.

PKU isn’t a race. It’s a lifestyle. Cut yourself some slack and don’t beat yourself up too much. Getting angry at yourself is only going to make you feel worse. There is always a point to trying, just get yourself back on track with the next meal. Take it one day at a time. And then you’ll feel better which we believe will be all the incentive you need to stay on the balance track. Because feeling better means being more of who you are. And that’s what it’s all about, right?

Hope that helps. If you have other ideas, please post them below for all to see. Because we’re all in this mission together. The mission to:

Feel balanced. Feel better.