We all have our own relationship with our PKU, these are some of the things that have helped me develop a positive mindset with the ups and downs of having PKU.
Supportive people network
I try to maintain a supportive network that accepts me just as I am. It is so empowering and can make my PKU problems much smaller with the surrounding support.
What this looks like for me, is my family and close friends that are considerate, inclusive and thoughtful of my PKU. As I’ve gotten older and taken on more of my PKU responsibilities, I joined several PKU support groups, including going to PKU retreats and conferences that has then allowed me to connect with other adult PKUers in my state. We now go out for regular PKU dinners. This not only helps to talk about our PKU challenges, it also helps to know there are people out there in the same boat as you, taking on the PKU adult world.
Vent
As I’ve gotten older, venting about my PKU can be more full-on, so rather than burden my support network (too much) I vent into my journal. I scribble out all my thoughts and emotions onto the page. It seems that the process of identifying my emotions and turning them into the written word rationalises my thought process, calms me down and I feel somehow better having ‘vented’ to my journal and captured it somewhere.
I am inclined to use the written word, it’s my go-to medium for expression, but I think the strong emotions that PKU can stir up can be expressed in all sorts of healthy ways; art, drawing, dancing, playing music, singing, you name it!
Exercise
Exercise is my go-to stress relief to maintain a positive outlook on life. I don’t always feel like exercising but I feel a lot better after I do a work-out. I find it very motivating and it sets me up for a positive day. I not only feel a sense of accomplishment but my mind is clearer, my breathing is better, and the happy endorphins make my day go smoother.
When things get me down with PKU – going out to get some fresh air in my lungs, with a quick walk around my block, improves my mood almost instantaneously.
I have found starting really small and setting the bar low, helps to get me up and going and then before you know it, you’re in a full-fledged work-out, huffing and puffing, as you sweat out all the PKU worries.
Practice self-acceptance
Self-acceptance can be hard, but we all have the capacity to make the choice; to be our own best friend or our worst enemy. I try to compassionately avoid denial with my PKU. When my levels come back from the lab, I try to “cop it on the chin” so to speak and acknowledge that being aware of the reality of my levels can only help me and my health in the long-run. I then practice compassionate self-acceptance so I can get back on the right track, if my levels are a bit high or a bit of a shock.
For me, I try to be kind to myself, do something nice for myself every day, something I enjoy without any guilt. On special occasions I like to get my nails done, or get a foot massage or buy myself something nice I can afford.
It’s really about loving yourself for who you are, knowing that you have the power to make a positive change, knowing that PKU is not ‘the worst thing in the world’ helps to keep it all in perspective.
Keep it in perspective
There’s an old saying that if everyone could put their problems on a pile in a room, you would go back in and take your own problems back, not someone else’s. It’s a perspective that we need to have. Everyone has their own challenges in life, no one goes along completely free of difficulties, but it’s our attitude that inevitably makes the difference.
I have noticed the more organised I am with my food, the more positive I feel about my PKU and its manageability. Using strategies to make sure I am continually organised helps me stay positive, keep it in perspective and on track with my PKU.
I also know that PKU ultimately is about my health and my ability to process the wonderful world around me, it is a great motivator in times of struggle, where I know good health is the greatest wealth.
Reframing
We all attribute meaning to things. To be mindful of this, helps me to reframe PKU and unlock the positive spin offs to having PKU. For example;
- Do you know anyone else with their own dietitian?
- Do you know anyone else who is as educated on food nutrition and protein as you?
PKU had made me feel okay with being different to others – a super strength. It has also taught me to be resilient on a daily basis. As PKUers we also don’t need to worry about our cholesterol too much. And being vegan in today’s world is getting easier and easier it seems, with it being very on trend.
