That's my PKU life

April 16th 2:14 am

Well Night 4 of 4 tonight. I know its been a while since my last post. I am sad to say I have fallen some what off track. I am so frustrated and exhausted. Why cant everything go right at once? there is always something!! You see, everything is pretty good right now , im finally looseing weight, I have a great job that I love , I am working lots of hours , I am more active and I am finding I really love sports and being active. I am enjoying activities much more than going to the gym. Like yoga, boot camp, badminton, Swimming, aqua fit, soft ball and I am looking to try some sort of dance and horse back riding. I am very happy and my pain is being manages pretty well. 

all sounds good right? well no! My levels are spiking! my last 2 levels have been over 11. my last one being 11.8 , and this time I do not know why??? I dont feel like I have changed anything that I have been doing for the past 5 months. I am eating low protein food, I am eating more fruits and veggies. I am drinking plenty of water , and still drinking my green smoothies.  The only things that are diffrent is my sleep schudel for work. My clinic is very understanding and is not worried. They said I am just adjusting to my shifts and new routines. But honestly I thought i had it under control. On my night shifts, I eat dinner with cole, than I bring snacks for 1am and 3 am if i am really hungry. I bring veggies, fruit or low pro . At 5 am I have my formula and a low pro bagel . Then I go home and go to sleep. I dont eat again till dinner when I wake up. I am drinking all of my bettermilk too.  On my days off the first day I try to stay awake 24 hours now. I dont go to sleep when I get off. So like today when I go home I will try to stay awake all day so I can go to sleep tonight and be able to sleep during the night. I just had some crackers, and I wont eat again till 5 , today i brought Froot Loops as I just ran out of my cambrooke bagels. I will have a snack at 10 am after yoga. Low protein lunch at 1 pm and maybe a snack in the afternoon, normally fruit and a regular dinner with cole when he gets home. 

So honestly other than the occasioal sushi I am not sure why my levels are high and it has left me feeling very discouraged. I even have not been recording since April 7th. I havent done any blood tests since April 1st. I cant let this go on. I have to get re motivated and step it up other wise this will become a pattern and will be harder to get back on track. I dont want to stay down to long. So I am trying to remain positive and get re motivated. I havent had a “BAD PKU” day or week in a while . Even when did though I didnt let it bring me down. However my levels have not spiked in to double digits previously. My clinic is not worried since range is 10 and so they are not to high. Cole is not worried either. But I was doing so good!!! I was getting them to my goal of under 6. 

I guess I need to re evaluate my goals and my plan. Starting with to start recording again and do a blood test to see how far off track I have gotten. Since im running out of cambrooke foods I should plan to do some baking tomorrow. I will be to tired today. 

Its just hard not to get discouraged sometimes is it not? what do you do when you are feeling knocked down? How do you get back on track? Have you ever experienced anything similar with your levels? have you noticed any patterns or life style changes that effect your levels? id love to hear from you! 


Discover more from I am PKU Strong

Subscribe to get the latest posts sent to your email.

2 thoughts on “April 16th 2:14 am

  1. . I had my levels rise when I was under stress. It was the first time ever they rose. I wasn’t aware that the emotions had such an effect on my levels until then, but they do.

    Like

  2. I’ve missed your blogs Amanda, and was wondering how you were doing. I’m so sorry for the discouragement. It makes staying on track even harder.

    Not sure if this will help, but a while back, when I was going through a rough time, I read a book called ‘The Two Degree Difference.’ I’ve often refered back to this book, both for myself, and for others. One of the illustrations in the book was about the guy who was mayor of New York when 9/11 happened. During his tenure, the crime rate dropped drastically. When asked how he did it, he said he fixed one broken window at a time. Houses with no broken windows are less likely to get vandalized. The basic principle was that making ‘big’ changes is overwhelming. However, fixing one window at a time results in big changes. Keep making your ‘one change at a time’. You are making a difference.

    Annemarie Davis

    Like

Leave a comment