The rollercoaster effect

The rollercoaster effect

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The rollercoaster effect

February 26, 2013 in Uncategorized

I have been controlling my diet for the last almost year on what seems to be a rollercoaster ride.  After deciding last year to get my levels down where they needed to be I recieved a level of 14 which is great considering the last had been 32.  But I found that in hearing a great level I get frustrated at the amount of focus and work I put in to get that level.  I am VERY classic PKU (NO part of the emzyne whatsoever)  I have found that in needing a great level I have to litterally STOP ALL food intake and drink the formula only.  My last level was 9.4  a great level but once again in hearing that I got lazy.  started eating again plus bread and some cheeses.  SO my levels shot up again I found myself mentally beating myself up over not sticking to the regiem.  I kept thinking that "Im gonna do it today"   and then a friend would ask me over for lunch...  bad decisions were made and as I lay in bed again... "tomorrow is another day I can do it tomorrow".     Until I realized that for me I needed to call my socialworker at the U. and get the nutritionist to make an appointment with me.  I stayed on the phone with her for an hour  some crying and some laughing at how horrible I was doing.   As she always does she lifted my chin and verbally wiped my tears and helped my focus to return.  I started with a glass of formula and decided then at least a week (because in my mind a week is doable) I would be strict again.... In doing that another hill n the rollercoaster of my emotions.  I got MAD. REALLY  mad.  I had a ladies dinner night at church where the older ladies had all made homemade soups and homemade breads... I sat in the corner with my arms crossed drinking water and frusterated that this exact senario has gone on my whole life... I thought last year I had finally accepted this. I was doing so well (off and on) better than I had in the past years.   Why was I mad again???  And am I going to frequent this anger? Will I ever be totally ok with PKU? and what purpose does PKU have in my life?  I came home and cried as I made dinner for my 2 nonPKU kids. I drank another glass of formula and my son asked "mom, are u OK?"    In that moment I had to pause and think what lesson do I want or in fact need my children to understand about my tears.    I turned around and explained that PKU isnt fun or easy but I do it because I love them so much and want them to have the best mom they can have.  I not so many words I told them we all have things that we have to do to take care of ourselves that we may not like at all, but that it is important to do them anyhow to stay healthy and live a full life.  My son at 11 years old looked contemplatively at me and said, "We love you too,Mom, so much", with a tear in his eye.    Who knew some of my lifes hardest struggles and greatest victories would soften the heart of my loving son.    I hugged him, kissed him on his cheek and sent him upstairs to brush his teeth.  My heart was lighter and I felt my weight lifted as I made yet another glass of formula.  

1 Review of The rollercoaster effect

  1. Registered: Nov 22, 2006

    Posts: 0

    Davis, California

    Hey Nickelle1980-
    I am also an individual who has had classical (very classical) PKU for my whole life. I am allowed to eat 4 grams of protein a day (a slice of bread max) which is bloody miserable.

    I’ve always been very sensitive to protein intake to the point which my housemate and boyfriend can notice when my levels are high. I get very emotional, angry, and irritable for no reason. Sometimes im ‘fun’ and spastic. (My housemate doesnt use the word fun). Overall I personally hate having high levels.

    My mum has always told me- Put your PKU first- otherwise it will put itself first. And as all mothers are, she is right. Being frustrated, angry and irritable has never done me any good. Despite its frequency. My overall drive is that it doesnt feel good to be like that. My irritable swings sound a lot like your rollercoaster.

    Social events are hard; its hard and its not gonna happen over night, but heres what I do to help:

    -Lunch with friends-
    ——Its hard because you dont want pitty, or attention from it but make sure they all know and are familiar with what you can or cannot eat, they’ll start to think about you and help you with what you need.
    ——- Find a go-to meal or restaurant. I have a few favorites, my number one is salad and fries (a small handfull of fries is roughly 2g protein, and a salad can help as a filler. Take aminos before your meal because it will fill you up greatly! In thai restaurants I have Tom Yum (hot sour) soup, or sweet and sour veggies with a small bit of rice (really small).
    ——- Limit yourself to eating out. I generally hate breakfast and avoid it (college student- coffee and class is my breaky), then I have one 2gram meal, snacks are impossible to enjoy low protein so I generally have a few more grams there, and then a free dinner. Lunch and dinner can be swapped. But it means you really cant go out to eat too often. Even once a day I find kicks up my levels too much just because I over estimate or cheat.

    -Social events with food
    —–Bring your own tasty dish to share with everyone! I promise this is the only way you’re not sitting there watching everyone eat. A salad, or roasted veggies, or hell- a jug of smoothie. Anything helps pad the stomach in such a situation. (plus they think you’re adorable for bringing something)
    —–If bringing something isnt an option, like a wedding, eat before you go. Again, it sucks and social events based around food really arnt fun for PKU people, but remove food as a factor and it gets more fun.


    I didnt see you mention anything of PKU food products- really look into getting some! My two staples are PKU bread and PKU pasta- they’re virtually free and I’ve discovered that you can put anything on toast and it tastes fine (not gourmet but some things are better than other, and the bread acts as a free filler), and pasta is just a low protein go-to! It looks (and apparently tastes) normal.

    I recommend asking your dietician to send you some formula trials- there are soo many different types! (Seriously- one tastes like gatorade- but its a lot of fluid to drink in one day!). Find one that works best in your lifestyle as well as your taste.

    I am rarely at home and so I prefer the pills (I take 72 pills per day plus additional supplements- so not the best if you hate pills) but it makes it easy to do anytime, anywhere. I shouldnt have an excuse for not doing them. There are also ones called add-ons that you tip on your food, and the taste of the food disguises the minimal taste of the add-ons. There are milkshakes, milks, gels, gatorade, bar, most everything you can think of! Its wacky. (They have yet to come out with a stomach pump- if only!)

    Also if your kids are up for it, maybe offer them to trade cleaning the table for making aminos- they choose. Having someone else mix your aminos is just a simple blessing in life! I highly recommend trying it! (It’s hard to ask, but people are very interested and eager to help!)

    Best of luck! I’ll try and be on more frequently if you have any questions or comments! I would love to help in any way possible!



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