So no matter what age you are, for most women , the elephant in the room always seems to be our weight.  So having PKU should not not make it any different right? Well someday’s I just don’t think so. Like today. Its so tough.  The Frustration can get so overwhelming.

I have always struggled with my weight, and it always seems to be connected to my levels too. Normally When I have bad levels, I have my lower weights on the scale.

I was a very tiny baby and kid.. Then I started to get pretty chunky from age 9 or 10 , then went small again untill 13, and then I got heavy again until I was 17/ 18. Then I really dropped down. I was way to thin at 17, 18 and 19. Accused of being anorexic and unhealthy. I was certainly unhealthy, and suffering from many high level symptoms.

My self esteem and confidence has always been so low and I have a very poor body image. I am very unhappy with how I look. I feel frumpy , ugly and flabby!

It is so hard to manage the balance between low levels and low weight. I can never seem to find the right balance. The Low protein foods are high in carbs and sugar but low in protein. They fill me up and make me feel satisfied ,  I cannot eat enough fruit and veggies to feel full. I always feel hungry unless I have my low protein foods. Plus Im a picky eater and I get sick of fruit and veggies. Though over the last year I have come along way. I use to eat alot of fruit and veggies and I loved them , But I just got so sick of them every single day. With no variety . So I stopped eating them as much, and its taken my years to force myself to start increasing them in my diet again.

I love my protein food and I really get stuck in these phases where I just want one thing.  I always cook it the same way too. Then when I get sick of it I start craving something else. Right now I am on a Rigatini pasta salad kick, every night for dinner!

When my levels are low, I put on weight from the low pro foods, and when I start loosing weight I start raising my levels. So I never stick to a work out routine long enough.

Last month I lost 10 lbs and that pretty much was a result of being active for 3 months prior. Then my levels spiked so I took a break from physical activity to focus on my levels and increasing my low protein foods again. Now I have gained back ALL the weight I lost . Just as I started feeling better about myself and have my clothes start fitting nicer. Now I feel huge again and heavy. Not to mention the discouragement I feel.  I love the summer, I feel like I come alive in the summer and there is so much I want to do , but I hold myself back because I am so uncomfortable. Hot and sweaty and nothing fits comfortably or feels cool enough.  I love the sun and I want to be out in it any chance I get. I love the heat. but I hate my summer wardrobe.  Every winter I get rid of all my summer clothes, hoping it will push me to loose weight by summer so I can get nice clothes.  and every year its always the same.  I find its easier to be eat healthier in the summer though.  I think the heat makes it easier to eat lighter and less starchy meals , maybe because its so hot to have big meals. I do like warm breakfasts and dinners though.  In the winter I am always so cold , so I want warmer , more filling meals. Summer is much easier for eating fruits and veggies. Specially for breakfast and lunch. I tend to eat more salads in the summer to. Salads to me though are a lunch food. I just cant make myself only eat a salad for dinner.  I am trying hard to change these habits I have developed , to develop a healthier life style, but I cant seem to keep the weight off. It takes months to get it off, and then weeks to put it back on!

When I start to change the way I eat, incorporate more variety and more fruits and veggies, control my portions, focus on natural and organic foods, and spreading out my meals That’s when I begin to loose control of my levels. Maybe because I am hungrier? and I try harder not to rely on low proten foods and tend to pick other snacks lower in calories but higher in protein.

Its a constant Merry GO round! Just when I think I am beginning to figure it out something throws me off .  Then throw in working the night line. Sometimes I just feel like the odds are stacked against me. Every year I promise myslef that this will be my year to transform my body and I can picture in my head what I want to look like and how rewarding and amazing it will feel like. I want to be healthy and in shape more than I want to be skinny. I want to be more active and try new things, I dont want to miss out on some activities because I hold myself back from my lack in self esteem.

I have been told that it is very common for PKU women to be heavier in there 20s. The stero type for PKU girls , is blonde hair blue eyes and thin!  Then as young adults PKU Girls start to gain weight and fill out or, “apple shape”  However Like I said that is a stero type. and though I am heavier now in my 20s then I was as a teen, This is not the case for everyone.

A lot of people I meet , When I explain to them about my diet they say things like ” you must be so healthy, ” that’s a pretty great diet”, and then they start to say , “you should be so thin”, But then they stop themselves. They think, because of the amount of things we are “allergic “it should be easy to loose weight or keep it off. Then I tell them my low protein foods may be low in protein but not in calories.  The medical foods we rely on for our brains are not ideal nutritionally.

This became such a problem for me in high school that I just eventually stopped eating.  A lot of that was because it caused me alot of stomach pain when I ate and I still do suffer from Irritable bowel syndrome and gasto- intestinal symptoms. But being honest with myslef, thats how it started, then I dropped a ton of weight and began getting attention and noticed by boys and it went to my head. I loved the attention and getting noticed, hit on or whistled at. It was such a confidence  boost to have heads turn and being checked out. That never happens now. I should be ok with that since I have such an amazing man who loves me for who I am , and makes me feel so special . He does make me feel beautiful but every now and then its nice to be appreciated buy friends and others who dont “have” to tell you your beautiful.

Cole is at the point now where when I start to complain about how I look , instead of telling me not worry and that I am pretty, he tells me to do something about it. That I am not active enough and never follow through or stick to a routine. Sometimes its kinda annoying.But he has a point, he cant make me happy, I have to make myself happy.

Its hard work , its not easy and it will never be easy. I just have to find that balance.  So that’s again what I am doing, taking it one day at a time. tracking my food again and doing my blood levels and now I have to start working on my activity again. Get back to yoga and the gym! Also I hope to get my pool set up this week, then I can swim whenever I want!

One day, I really really hope I can climb this mountain and have the body I have always dreamed about, to look in the mirror and be proud of accomplishing my ultimate dream, and feeling the reward of loving my body.