Community Discussion Forum Adults and PKU off days Reply To: off days

Avatar of Hunter

Hi Everyone-

I am new to, and am excited to meet people going through tht same things I am! 

I was on NeoPhe for aabout a year after really struggling with my diet during college. I really could have cared less if I ate right because I couldn't tell a difference in how I felt. I wanted to eat healthy like my friends… with whole grains and lean proteins and little carbs… aka the opposite of a PKU diet. When my levels are low I am able to compare and see that I feel better than before… but when my levels are high I am in a fog and I don't seem to notice or sometimes even care. Looking back I slept a LOT and had REALLY bad headaches… so obviously I felt different, I just didn't notice or… maybe didn't want to notice.

But as of the last few months I have come back to the old diet from when I was a kid, Nicole1982- I, too have severe classical PKU which gets frustrating because sometimes 10 exchanges seems impossible to follow and not be starving. Thankfully I have found out about SO MANY products recently that have made this transition easier. I am also studyign to be a dietitian so I was concerned about the overall nutritional content of all of the LoPro products (fiber, carbs, transfat, etc) but I am finding more and more products that are nutritionally balanced and taste GOOD so that too is encouraging.

Back to tough days though, I have been really good over the past few weeks especially and the other night I was out to pizza after a halloween party with my friends. I just sat there while they DEVOURED their pizza and calzones like they were never going to eat again, and I just got angry and sad and broke down later that night— WHY ME!? These people don't have to worry about what they are going to eat or how much, they are hungry: they eat. IT SUCKED!!! But in the end, I didn't have any pizza or anythhing and went home and got myself a snack, and my boyfriend let me vent and let it all out. I am reminding myself t's OK to get frustrated about this diet because it is a huge undertaking… but it can be done! 

I think the motivating factor for me is that my high levels affect other people if I am moody or tired or have a headache, and more importantly if I want to have kids one day, I will need to have this tight control. I find when my levesls are lower it is easier to not cheat, but one cheat leads to 2 to 3 to 4 and then I am a few days down the line wihtout formula and all out of whack and think 1 more won't hurt. It is a vicious cycle… but so far I have broken it! I hope to keep it up, and am happy I found this forum to share. Sorry for the rambling I am just so pumped to have people to share all of this with, people who understand !!!! 

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