The question I have been asked the most often about phenylketonuria is probably in relation to the effects I feel when I do not follow my diet. So I will talk about it here by telling you a very personal story.
Several years ago, I started doing some research on social media (which were then very recent) on phenylketonuria. I stumbled upon some interesting pages, one of which organized a live podcast on the subject. One could hear about, among other people, an American dietitian who was also a PKU. The title of the podcast: Lifting the Fog.
So I listened to this very interesting podcast that opened my eyes to a very important reality. When we do not follow the diet, it is not many weeks or months later that we can feel the effects, but rather a few hours or days later. In fact, the dietitian explained that when she started to forget a few things (details, like her keys) or had a little more trouble getting organized, she took a moment to think about what she had eaten recently. In general, this behavior was explained by a botched diet in the previous days.
That’s when I decided that I was taking control of my diet. Definitely. And it was later that I noticed that the podcast was indeed aptly named.
Although I had a hard time respecting my diet during my studies, it never stopped me from functioning because I was lucky to have a mother who made me follow the diet very closely during my childhood (always remember that it is important to follow the diet carefully for a baby or child). I imagine it is also possible that we are affected on different levels (this is also what psychologist Susan Waisbren said when she was asked about it by the podcast leader). I did very well during my studies in science in CEGEP, then my bachelor’s degree and my master’s degree in communication in university. But when I fully took control of my diet afterwards, I could not help but notice what it did to me. It was literally a fog that had dissipated. Everything appeared even clearer and easier than before. I was simply brighter, faster, calmer and more serene than before.
Why do we have to continue our diet as an adult? Because it’s important for our health, because it allows us to live to our full potential. Because if you cheat right now, you simply do not realize what it is doing to you.
Do you have similar experiences to tell?
If you’re interested in the podcast, it’s still available by clicking here.
~ T
This is very interesting to read! I am newer to the PKU community because my partner has PKU and is currently trying to get back on a strict diet. He has never used the term « fog » before, but I’ve noticed some of the things you mentioned in his behavior like forgetfulness, and lack of organization. I often think it’s just laziness and being careless, but I’m beginning to see that it probably has much more to do with him being « off diet » or not on the best diet….
Thanks for sharing! I look forward to reading more from you!
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You’re welcome! 😃
I didn’t even realized myself that it was like a « fog » until I listened this podcast. Don’t hesitate to join our community on Facebook. I have a Page and I just started a Group 2 days ago! Look for Phénylcétonurie Quebec. 🙂
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