serious diet struggles-help?!

serious diet struggles-help?!

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serious diet struggles-help?!

November 5, 2010 in Uncategorized

Hi. I'm Terry. I'm 34 with classic pku. I was one of the generation that was told we could go off diet after a certain age, so I spent 6 years off diet, and have spend the last 15 trying to get back on. Yes, 15 years.  Let's be honest, its not difficult to drink 3 PKU coolers a day. Its difficult, but not insurmountable to watch the foods that you eat-what is proving near impossible is the emotional struggle. I feel an overwhelming amount of failure. The list of things I've lost to, directly or indirectly, high levels is long and has been very painful at times. I've lost countless jobs, friends, my wife, but even moreso, a sense of me. I feel like...I know who I am, but being off diet and having my levels so whacked, I'm not him. I war within myself all the time, hoping desperately that the true Terry will win, not the effed up off diet Terry. I'm told when you're on diet for a while you feel better. I'm told ill start thinking clearly, and all the way normally in a year maybe. Thing is, I don't KNOW any of that. What I know is I try and fail at diet over and over again. I can't seem to figure out a way to do it, and I don't know what to do differently. I live in Canada, and in my province we have some low pro foods covered in our free healthcare, which is great, but even that isn't motivation. Its true that the longer you're off diet, the harder it is to get back on, and the more desperately you need to get back on. That's how I feel-im treading water because I know drowning (just going off diet for life) isn't an option. Anyway, I'm sorry that there's so much in here, I've never known any PKU adults that were off and returned other than my brother, and I clearly could use the support. Any comments at all are welcome! Even a "hang in there" from people that actually know what I'm going through would be amazing! 

9 Reviews of serious diet struggles-help?!

  1. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Hi Terry,
    Sorry things have been so rough — I can relate. I’m a different person off diet too. You will feel better over time. I could definitely beat myself up over some things in my past too; things that I know I would have chosen much differently if I had been on diet & clear minded. Don’t let yourself dwell on it, you only have today. Things will turn around gradually once your thinking is in the right place. Do you have a support system? Even if they are non-PKU’ers, just people that you can talk to?

  2. Registered: Nov 4, 2010

    Posts: 0

    mill park, INTERNATIONAL

    your story sounds alot like mine i was taken of my diet when i was 12 and im 37 now i was on it for three months when i had my first son but i can not do it the food terrible and variety suck i used to have to much trouble keeping down the shake

  3. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    Hi Terry,

    First of all, PLEASE dont be “sorry” you have wrote a bit about yourself. Everyone comes on here because they need help AND want to help other people!! I am also so sorry to hear how much of a bad time you have had!

    I was 14 when I came off diet, I am now 20 and back on diet due to the fact that I wanted to get pregnant. I have been back on diet for just 6months and I ALREADY feel SOOO much better! I started to feel better just a month or two after getting back onto diet. Even when I have my baby I think I will now stay on diet. Hopefully the diet will not be quite as strict as this one. But it is SO WORTH being on diet.

    While I was off diet, I again felt like some random person had come and taken over my brain and body. I was not myself. I suffered depression, anxiety & loss of concentration. At one point, I was too afraid to step out my own front door. I cried nearly every day for about 3 years or maybe even more. I have never been so unhappy in all my life. Learning new skills was SOOO difficult. I couldn’t do simple sums anymore or even make simple decisions about even what to wear in the morning. Everything seemed such an effort and such a struggle. When I was off diet, I felt like a failure every day. Not because I couldn’t get back on diet, just because that is how I felt about myself generally. I just felt low and generally horrible!

    Mardendew described being back on diet as “a cloud being lifted”. I could not put the feeling any better myself. As I said, I have now been back on diet for just 6months, and I started to feel like that only a month or two after getting back to it. I was on anti-depressants when off diet, I have now come off those completley and I feel fine about that. I have so much more energy now! Even getting up in the morning felt like the most difficult thing in the world! Now I get out of bed in the morning and get ready for the day with a smile on my face most days! I cannot remember a time in my life that I felt this good about myself and my life!

    I would like to be able say that I could PROMISE that you will feel better when you get back onto diet. I obviously cannot MAKE that promise, however I definately think that is worth a try! I know from my own experiences that going back onto diet is one of the best things I have done in MY life! It IS hard watching other people eat exactly what you want. But I just think about how terrible I felt when I was eating those things, and it all seems to make sense!!

    I hope telling you about my experiences has made you feel a bit more positive about trying to get back onto diet?! And I’ll give you a “hang in there!” too! Just keep trying! It will all be worth it in the end!! x x

  4. Registered: Feb 13, 2009

    Posts: 0

    Glendale, Arizona

    hey Terry i am Melissa i struggled with my diet all my life sneaking food ever since i can remember my parents never knew in middle school i had it with the teasing and i started getting worse high school i wanted back on my diet i tried and failed when i moved out of my parents house and went to collage i went completely off my diet about a year ago after i dropped out of collage because my grades were so bad and was having a hard time at work i realized i needed to get back on my diet in order to succeed it took me 6 to 8 months to accomplish my first goal and that was to start drinking all my formula it was hard knowing what to eat because i had no idea how much phe was in anything after meeting with my nutritionist she help me set more goals and thought me how to find out how much phe was in everything how to measure and how much i can have a day and although i still need to get my levels a little lower i feel an amazing difference since my levels are lower i had no idea how big of a difference it made because my levels have always been so high

    so my point is DO NOT give up keep trying make goals and look for the help you need from your dr , nutritionist, and family the hardest part is thinking before you eat i work in a cafe i see food go through my line that i love to eat but cant i had to tell myself no everytime i thought about those foods i said it out loud and of course people looked at me odd but you have to do what you have to do for your self not for anyone else and you have to want it

    try to find something that takes your mind off food i like to work out it helps alot

    by the way i blog on here about my diet its called REHAB check it out i might help you

    Your Friend


    ps.. if you need someone to talk to im here

  5. Registered: Sep 20, 2007

    Posts: 0

    Woodbridge, New Jersey

    You never knew any adults who went off diet and tried to go back on? You do now!! I went on when I was 4 or 5 and went off at 10. I tried to go back on when I was in my early 30s. it changed so much in those years i couldn’t handle it. it changed even more and it’s impossible now. Especially when Obamacare goes into full force and i go to prison because i can’t afford to buy insurance. I computed it would cost between 700 and 1000 dollars a month to maintain the diet. i don’t have that kind of money and i don’t know anyone who does.

  6. Registered: Jun 27, 2009

    Posts: 0

    , New York

    Have you watched the presentation by Susan Waisbren on the NPKUA’s website? It might be interesting to hear her findings. Stop being so hard on yourself and take it one day at a time, congratulating yourself on days when you do well and be forgiving on days when you don’t make the best choices. Going back on diet is not just about willpower. I am amazed at the adults that were told they could go off diet and somehow manage to go back on this highly restricted diet. Here is the link:

    If you need some recipes to get you going, try the veggie chili on Cook for Love’s website– it is out of this world delicious!

  7. Registered: Dec 4, 2010

    Posts: 0

    birmingham, INTERNATIONAL

    terry hi , i live in the uk and i have been trying to get back on diert forever , i know exactly what you are going through , i have three children and i have had to send them to live with my motherso that a can finaly attempt to get well , but like you i f have failed soo many times , it makes you lose all confidence in yourself , and the frustration is unbarable ,if you want some one to talk to contact me i could really use your support may be we can help each other , i have never met or wspoken to another oku in my life and i feel very isolated as nonone really undwerstands whats wrong with me xxx

  8. Registered: Oct 12, 2010

    Posts: 0

    belfast, INTERNATIONAL

    terry iys difficult but it can be done. just think out your meals and use the liw protein products. keep in contact with your dietician and the mental confusion does lift. dont lose patience . it is a way of life

  9. Registered: Feb 16, 2010

    Posts: 0

    Deatsville, Alabama

    Hi Terry,
    I understand more than anyone that getting back on the diet is a definate struggle. I am 43 yr old and I was off diet when I was 5 yrs old. Ok that’s young and when I was born my parents moved us from IN to FL just because the drs. in FL knew what PKU was. That’s bad! The drs tried to put me back on diet when I was 10 but I still could not tolerate the formula. I have tried every formula they have ever had and nothing was pleasing. I am married and Valentine’s I will be married 15 yr to the same great guy. He is overweight and I was trying to help him loose weight and the South Beach diet I was trying to do with him until one day at work it clicked and I notice I could not sit still in my seat and concentrate. I knew right then my levels were to high. All my life I have ate anything I wanted but in the back of my head I was calculating at how much everything was that I placed in my mouth. So I contacted my doctors and dietician in 1999 and tried all kinds of formula and landed on phenylade amino acid blend. That was the only one I could get down. My doctor had a heart attack and then was sent to St. Joes and found Belky’s the dietician which is a God send. She helped me out so much because I had the hardest time keeping the pku levels down. In 2007 she and I both did the trial for Kuvan. I cannot tell you if your a responder but for someone that has been waiting all of her life for a pill this was a blessing from GOD. My levels dropped half which most of the time they were in the teens. Everyday is a struggle even being on this but my attitude and concentration level has definately changed. Believe me my husband knows the difference when the levels are too high and that’s when I know I need to cut back. I can’t say that I drink the formula all of the time but I do take the Kuvan and it works no matter what anyone says.
    I do hope you can try the Kuvan to see if your a responder and it works for you. I’m not sure if you know but here in US they are working on a monitor for our PKU levels just like the dibetics has. Not sure if they will get that in Canada or not but hopefully they will for all PKU!
    Just try to keep your chin up things will get better.

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