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June 15, 2010 in Uncategorized

I have never blogged before, and I talk about PKU as little as I possibly can. PKU is something I consider, really, the great failure of my life. Needless to say I am off my diet, and have been that way for so long I am embrassed and ashamed to say. PKU and my non-compliance is a cause of so much shame in my life and disappointment in myself I can not even find the words to describe. I almost just clicked right off this site because it is one of those places where everyone seems like they work so hard on their diet, and listening to all of the stories of how people have gotten back on their diet, or even worse never went off the diet just point out to me how awful I am at dealing with anything that has to do with this topic. The truth is though, I dont know what to do, I don't feel like I will ever be able to conquer this, and I want to have a baby. I can not be the reason that my husband and I have a son or daughter that has any problems. When I think about everything that PKU entails I am filled with such resentment. At the same time that I am resentful for all of this, I also have the thought, how can I complain? Things could be so much worse. I am resentful of everything, the fact that unlike my friends who are married and my age who can just decide to have a baby, I have to change everything about my life in order to do so, I am resentful of the fact that my husband has to deal with my resentment everytime the topic comes up, I am resentful that I have had doctors have told me that, "really, its not fair for me to be as intelligant as I am, because I have been off my diet for so long," I am resentful that it caused such stress in my mothers life while I was growing up, and although she doesnt say anything anymore she probably still worries about it, and I am resentful that I am not one of the people on this site who has a ton of friends and knows whats going on in the PKU communitiy, but that I actually despise it. I am resentful of everything I just listed but I am also so ashamed, I cannot believe that this has become such a huge thing in my life, and that I cannot just DO IT. I cannot help but think about what a spoiled, brat I'm being, and yet I can not for the life of me figure out how to change it. I can not figure out how to get my act together and just follow the diet, and keep my levels at a reasonable level. For these reasons I have turned to this blog.........I don't know if it will do anything but if anyone has some of these feelings or has any ideas how I just get over it and do it, PLEASE respond to my blog. I am teacher who loves kids who is terrifyed that I will turn my failure into my husband and child's problem, its not just me anymore, my husband doesn't deserve to have to deal with this or god forbid anything that could happen to our future children. My family doesn't deserve to have to deal with me trying and failing at this whole PKU diet thing. I just don't have the heart to disapoint them all anymore. Please, I feel totally hopeless, suggestions are welcome.... Sorry this is so negative I am actually a pretty fun person this is just a tough topic for me........ Katie

5 Reviews of Hopeless

  1. Registered: May 11, 2010

    Posts: 0


    Well i remember not wanting to be on the diet and cursing it, but i never resented it or the fact that may parents put so much work in when i was a developing child, thank god for that! ( which is the most important point of being on PKU you’d agree i am sure). Yes when i was off diet i was upset with myself for not continuing my parents efforts.
    I found that being off diet my mind was in a constant fog and my energy levels were low quite often, i don’t know if you feel like this, or maybe it is not noticeable at this point for you, as it wasn’t for me until others pointed it out.
    I want a baby, this is why i am back on diet, and i am doing very well! I have great support from my partner, and i am sure that your husband will support you, people will not resent you for being on diet, in fact they notice the change! They have in me anyway! My whole motivation i am sure it will be for you, is that i want a healthy happy baby, and also a healthy happy life for myself. I see being back on diet as not being for me but for the future of my family. I now realize that i should be on diet for the rest of my life, as i feel like the person i should be, trust me its great!

    I hope that this helps you to look at the diet in a different way, because you know there are worse things that we could have wrong with us than a dietary controlled condition!

    Best of luck for your future!

  2. Registered: Feb 2, 2010

    Posts: 0

    Palmerston North, INTERNATIONAL

    Hello :)
    I’m one of those you resent haha, one who’s never been off diet, and I think you are so very very brave for writing all this down, let alone actually posting it! I’m so glad you are being honest, even if it’s not all good stuff. You are an amazing person for being so open and honest about your feelings.

    I don’t really know what exactly to say, as I’ve never been off diet I don’t know how difficult for you it is to get back on, as I’ve never known any different. I have however resented the diet quite often, mainly over the pregnancy issue, it’s extremly unfair, I never ever want to become accidentally pregnant, even on diet I can still cause so much damage to a child because my levels won;t be low enought, and the possibility of the complications and pain I might cause scares me, even if the child is unborn it’s a very horrible situation for me to think about. Other resentment is when my boyfriend wants to go out for dinner or lunch with me, especially if it’s spur of the moment while travelling, it can take so long to find somewhere that doesn’t have just a salad and chips as their vegetarian meal, it can be very frustrating and sometimes upsetting as you just want to enoy your nice evening out.

    Anyways I just want to let you know I admire you for all this, although I don’t know anything about getting back on diet, I know it’s not easy to manage the PKU diet, all I can think to say is take it in small steps and make small goals and work towards them.
    Other then that, I think you can do this :) good luck with everything

  3. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Hi Katie,
    Thanks for being so honest. I’m 30 and have just gone back on the diet in October. I really do understand your feelings. I am really really sensitive to high levels, so going on back on diet was something I realized I had to do when my boyfriend kept pointing out how emotional I was and how difficult it was for him to deal with. Believe it or not, at that time we had been dating for over a year and I had never explained PKU to him. I took him to a meeting in my area, and we both made the connection that my mood swings were diet related. I still have times where I’m a little more relaxed & I end up freaking out emotionally on him. I HATE the feelings of having high levels, and it is so hard to watch every bite I eat. I’ve broken down crying many times over having to go to large gatherings and either not have anything to eat or explain to everyone why I wasn’t. I do have a lot of days where I wonder why I have to deal with PKU.
    I think for me it just clicked when I really realized this was something I need to do to be my best. I have hard days, which is why I visit this website or try to stay in touch with PKU friends. I hope you are able to make it work out. It’s hard, but it got easier for me when I accepted it rather than trying to ignore it. Experimenting with food can be fun, and I feel like I can eat a lot of what I used to by substituting low pro versions. I bring my pastas and breads to friends’ houses, and it’s not so bad. Try Kuvan, or some different formulas. Some things might work out for you better than others. Feel free to email if you want to chat.

  4. Registered: Sep 28, 2008

    Posts: 0

    Manhattan, Kansas

    Interesting. I’ll be honest, I, ever since I was young, have refused to become part of the “PKU community”, I have never (and probably will never) attend PKU conferences, field days or whatever they’re doing, for no other reason than the fact that I don’t feel special. That was one thing that taunted me as a child – being referred to as “special” or on a “special” diet. I kept to the diet, but came off it as soon as I saw a window when I was 19. I ended up having to go back on it because of some mental problems that I’d tried to assure myself was something other than my PKU. Everything from anxiety to depression. Eventually I bit the bullet and flew back to England to see someone I trusted at Middle*** hospital, because, me being as stubborn as I am from time to time was sure that there couldn’t possibly be any American doctors or dieticians to help me figure this out. Anyways, slightly off track there. I understand where you’re coming from. I joined this PKU forum to find some answers – still looking on some fronts. Moving to Japan soon and we’ll see how well trying to manage a PKU diet goes there. I realized the psychological issues I was having were being a burden on my wife, family and friends and realized it was up to me to do something about it, for myself too. Getting back on the diet was interesting…I was pleasantly surprised and mortified at the same time. Pleasantly surprised at the new formulas and foods that were out now – didn’t taste as disgusting as they used to before I came off it and mortified because of how much everything cost and my insurance company leaving me in the lurch because of “pre-diagnosed condition” crap. Anyways, if you’re considering having children, I know, that is something my wife and I have been talking to the doctors about because, if she’s a carrier of the PKU gene, the kid’s probably going to get it, even though it is recessive. However, that doesn’t scare me too much, at least we’ll be able to eat the same foods and that won’t be as annoying for the kid as it was for me, seeing everyone else eat something that smelled awesome and probably tasted great. As for women with PKU having children…I don’t know anything detailed about that to say anything, so I won’t. The specialists know their stuff though, and I’ve been pleasantly surprised with the help I have received in Kansas and how everyone here I’ve spoken to didn’t look down on me for coming off the diet for so long, but were just interested in getting me back on as painlessly as possible. I wish you all the best with whatever you decide.

  5. Registered: Apr 16, 2016

    Posts: 0

    No Location

    Hi katie…I read your blog and I have been mire off my diet than on …I think when weve all been on diet and then come off we think coming offs the right decision but in my experience I think I shouldve been kept on diet …although I dont think it dine me too much harm ..I was off diet when I was 13 then at 36had to back on diet as I was having twins then was able to ccome off again but since that time I think when I had my twins I shouldve been kept on diet now I know in uk when babies are diagnosed its a pku diet for life but I also think its about small steps… I whent back on diet on january this year I only take the pku coolers not on diet as strict but I find everything is a bit of a hassel as in finding time to cook low protein foods as im not great at planning ahead and I think when your on a strict diet things need to be planned …I think in your case its about small steps maybe try being on the low protein substances first till youve got hang of it then maybe trying to think about the low protein foods and trying to work with small amiunts then building up to being able to plan ahead….getting back to when I had to go back on diet when I had my twins..I found it really hard to stick to the low protein drinks I was on phlexy tablets ..couldnt manage taking them then the phlexy 10satchet drinks they were pk but the thought of the silver wrapper put me off …I wasnt good on diet at that time but I muddled through and when my twins were born they were both free of having pku wich I am very gratefull for ….hope I havent been going on and on but if you ever want to chat feel free

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