When I was a pre teen and teenager I struggled with my PKU so much. I am not exactly sure why I had such difficulty now. I just did not care. I didnt listen despite my parents pain and despite the education my clinic tried to enstow on me. I didnt want to hear it. I was hungry all the time. I started cheating at 13. My mom made menus for me every night and put them on the fridge about what I was suppose to eat that day. I hated having those decsions made for me , and I was picky about the foods she choose. I am still picky and I go through phases and cravings. Sometimes you just want what you want. I also was always told never to trade my food with my school mates also; pretty much drilled into my head. But At that age I wanted to try things. I had to learn the hard way, food that you cant have when introuduced into your body become like a drug addiction. You want them and crave them and would do anything to eat them. My first ” addiction” was Mr. Noodles , chicken flavour. It started in grade 7. I traded my fruit roll ups for a hole year of Mr. Noodles and when my mom gave me notes to go to the coner store as a treat I bought Sour cream onion sun chips, and mr. noodles. I would eat it all. My levels spiked so much in those years. In to the 20s, i think as high as 25 at some point. I lied about it too. I didnt want to get in trouble, grounded, have privileges taken away or be yelled at. Specially by my clinic staff. I always denied it and said it had to be from something else. I did not realize how sick I was making myself. I started having so many side effects but I swore up and down they where not side effects and something else was wrong. I also truly truly believed this! I eventually ended up in BC Childrens’s hospital for 6 weeks while I was in grade 9 . I had so many tests done and was on my own. My mom could not come with me as I had young brothers and sisters at home. While in hospital I was educated and taught about managing my diet on my own, taught about PHE and high levels and how to track my intake and measure my food. I got a scale and a food list binder to learn about the different values of food. I was also started on many different pills to treat my symptoms that I was getting from the high levels. By the time I left the hospital my levels where stable and I was on 19 pills. It lasted for a while but then I started eating badly again. My second “addiction” was to minute rice. Something that stuck with me untill this year. I swore up and down they would never break me of that addiction. I was so sick of potaotes and pasta. I just love rice and it really was an addction. I litterly had to “quit” and then I would get withdrawls. I have tired to quit 3 or 4 times now. This is the longest I have lasted.
Though out the years I have also gotten “addicted ” to oreos, cookies, yam and avacdado sushi. I am still addcited to sushi and for the past 6 months i have been going out for sushi almost once a week. Well untill april. I went once in april , and twice now for may.
I only eat rice now as a treat if im out for dinner. But I cannot have it in the house. I had to get rid of it all. Cole hididng it on me did not work.
I was also admitted again for high levels at 17 years old. for 2 weeks. To be withdrawn and to drop my levels down. Each admission that I underwent they would drop my levels in the first 3 days , but not allowing me any food and just formula on the 1st day, on the 2nd and 3rd day I would only have my formula for breakfast, and then for lunch and dinner I would have formula and applesauce. I was so sick and hungry. I could not cheat cause they controlled my food and there was not food on the floor or aces to fridge. I could not just help myself. I had daily blood tests from my arm and tests. After my levels where at the lowest they would slowly start introducing food again untill my levels raised up to where they wanted them at.
Luckily those are the only admissions that I remember. I can still remember how sick i was. The migranes, the anger, the low attention span, fatigue. Heightened emotions, vision problems, hair loss. Bleached out hair. Gastro intestianl issues like IBS and gastro reflux. Then the anorexia, not because I wanted to be skinny but I did not want to eat anything. I would have such horrible stomach pain after eating that I stopped eating . In highschool I dropped down to 109 lbs at my lowest and had bleached out blonde hair down to my waist. I started to get alot of attention and it went to my head. I was also taking laxatives every day to help with the IBS but the hospital never told me when to go off them and i stayed on them for over a year untill my dr. caught the “oversight” so i was always malnutrioned and de hydrated. I was bullied so much , pretty much every form of abuse I suffered at the hands of my peers atleast once and on an on going basis. I was so misrible and unhappy. The lowest self esteem and I hated myself. There is no worse feeling then looking in the mirror and hating your own self. I do not no how I got so lost or how I let my self get to far away from myself. i am ashamed of my past and who I was.
I try so hard now to stay healthy but we all have our “ups” and our “downs” its a constant cycle. For me its very related to either my mood or my finaces. IF i am not working, then I dont have money for food, if i dont have food then eat it wrong foods or to much food because I cant satisfy my hunger and then I suffer and cant work. Making it into a cycle where I have to hit bottom to stop and build myself back up.
I have learnt alot about myslef and what happens to me when my levels are high. i learned to read my body and I can tell instantly when I have had to much of something. I am very sensitive now. However even still I tend to over induldge or eat to much or the wrong foods even when I know I should stop. Like with Sushi, and about a year ago with Brown sugar oatmeal. That was an addiction for me as well that I had to ban from our house. Poor cole, having to put up with my food bans because I cant trust myself to have them in the house. I had cravings for weeks after i “quit” that one too.
So now I am very careful about introducing new foods. I do go though patterns though where I only want certin things. Right now my pattern is corn pops with almond milk and low protein pasta salads for dinner. I think I have had pasta salad every single night that I work a night shift for the last month or more. However my last pattern was mashed potatoes, that lasted about 6 months. every single night…. cole really is sick of potatoes now and would be very happy to not see them anymore. But i keep them around to eat on my dinners when I am off and have more time to cook something nice.
I think I have an addictive personality with these cravings and bad habbits. I wonder if anyone else with PKU experiences this? Would it have ever happened If I never cheated or introduced new foods into my diet. Atleast I can say and be proud of the fact that I have never eaten MEAT!!! or anything that would be way way to dangerous for me liek that. I do no better in some areas. My problem is eating to much of what I can have . I have never tried dairy, or meat, sea food or anything like that and I NEVER EVER willl! I have never really been off diet, even though I didnt drink all my formula as a teen I have drank all my formula every day for the last 8 years. I feel it soo very much if I miss it even by a few hours. I feel so sick when I miss a formula that it seriously scares me. I have damaged my body in some ways perminity. I am told I lost atleast 1 IQ point from my high levels, I have more white spots in the grey matter of my brain but I think I am doing pretty good , im not slow and I went to college and now I am a nurse.
I still have problems with my stomach and insensitivities I still have IBS and I still struggle with getting in enough water so as not to be dehydrated. I dont weigh or measure my food. I eye ball it. I have my ups and downs but I think im pretty on track. Well atleast I am making a real effort to be. I am setting goals and working to be compliant and lower my intake and my levels. I am working towards low enough levels for pre conception diet and for my future. One day at a time. Every morning I wake up a fresh start. I will get there! I am way more positive about that.
I really feel for all the adults out there like me that I have met who have come off diet or are not on diet I do not now how they can survive on a day to day basis. I am so sensitive now I can pick up the changes in my body and I really do not like it. I do not like how it feels. IF anyone can learn anything from me or if I could teach any PKU family, new diagnosis or child it would be to not cheat. TO listen, to be educated, to embrace it as a life style, do not be ashamed or feel left out. And to the parents , it does happen, its not your fault. Its our own. You did your best trying to teach us , but sometimes we have to learn on our own. I share my story because I hope to help those who have lost there way or those beginning out so they don’t make the same mistakes I did and heart it from someone like them that its not worth it! Dont make food scary or punishment or take away the fun from good food! And make sure there is a variety. Maybe if I learnt to cook and bake ealier on then I would have done better. I had no variety and felt left out and hungry. I also ate alot of my meals alone. In my room. I cooked all my meals myself to.. Dont do that! make meals social family time! I enjoy cooking now and sitting down to eat with cole. Even if we are not eating the same. We eat similar he just has meat added to his. I like having choices and a say in what I eat. I like to be able to go to my low protein cupboard and decide what ” i feel like” so involve your PKUer in meal planning. Dont plan to many days a head. For me its easier to plan meal by meal then its not as overwhelming. If i plan out the day then get there and its not what I want I either wont eat it or I change it. Another good tip is to make a list of meals with values ( phe and calories) for each meal and place them on a fridge and then when its time to start cooking, pick one of those meals or see what you feel like from the list! I find this very helpful and makes it easier for me to stay on track :)
So thats my message for tonight, thank you for reading!
I hope this post helps even just one person!
I am PKU Strong 