That's my PKU life

My Confession.

this is a difficult post to share with everyone today. However I have a confession to make.

I recently lost my way and fell off track with my management of my PKU.  I am sad to say things just spiraled out of control, one thing after another and I found myself stuck. I know how to pull my self out . I know what I need to do to keep myself healthy and how much better I feel when I am on track. I just could not seem to do it this time.

I thought when getting coverage of our low protein foods would make things easier for us adults. What excuses could we have now not to be on track?

Well turns out, its still the prepping, the planning, the measuring, the cooking, the baking, The managing every detail all the time. Sometimes it just gets so overwhelming and seems pointless. Even though I know in my head that it is not pointless. It protects my brain and keeps me healthy.  Some how I lost sight of that .

I started snacking on things here and there, my portions got to big, my choices where not healthy. I did not doing any low protein baking or cooking. I grabbed things from the cupboards that where easier and took last time. Like Rice, mashed potatoes. If I was hungry id grab cereal, chips, a few ciders here and there out at gatherings. Making excuses like its a special occasion. Its Ok I had a low PHE breakfast or I will eat something low for dinner. I began skipping lunch cause I was being to lazy to make anything.

The one thing I didn’t mess up on was my formula though. I drank it every day and my regular amount.

This went on for a few months. I think since May , One day just lead to the next, I had no motivation. I stopped being active or going out. Spending more time withdrawn and at home by myself.

Then I started noticing the effects it was having on me. The headaches started after a few weeks, from there I started having trouble with sleep. I wanted to sleep all day long and then all night. Would spend hours napping doing nothing. so tired and wanting to be in the dark in my room. My pain increased.  My concentration was effected, I feel more down, easily frustrated and sad.

Then I started noticing when talking to people at work I was loosing hole words. Trying to explain things, could see it in my head and knew what it was but could not think of the word I needed. That really freaked me out. I told no one what I was experiencing or what was going on.

My followers and my fans see me as an inspiration and think I do so well. I didnt want to let them down. I didnt want to admit I was struggeling and needed help.

I told Cole first, then one of my best friends Ashley. After saying it out loud I knew it was time to change. I set up my note book again and have been writing down what I eat but not tracking phe or calories at the moment. Trying to make different meals, cook and bake again. Add more vegetables and fruit. Increase my water.

I normally drink my formula twice a day, 2 packages of bettermilk and mio at breakfast and at dinner. Nothing at lunch or before bed.  After talking to my dietician I am trying to spread it out more. It means smaller amounts and volumes so not as satisfying to me . but more efficient to keep my going through the day.

I called my dietician after I talked to cole and Ashley. I confessed what was going on. I know no one can help me. That I have to do work on my own. I know how to do it. I have done it before. But It just seemed so overwhelming. Also cause I want so badly to loose weight and I am not. Knowing what I have to do and how much work it will be was overwhelming and discouraging me.  You see I am so happy with my physical image . I have no self esteem or confidence in myself. I do not feel pretty or happy with my body. I look in the mirror and  all i see is flaws. I see fat and flab and to much weight. I want to loose 50 lbs. I have set it in my mind if I can loose the weight everything will be better and I will be happier. I am not focus on being healthier and eating healthier. I am to focused on numbers and that if i loose weight my pain will be better, I will be happier , I will feel pretty and more confident and Cole would be happier too. I feel like I let him down physically and am an embarrassment. Though he constantly tells me that is not true!!! Hearing friends and family and Cole tell me I look good does nothing for me. I just feel they are being nice and thank them but never believe them.

So this is where I have been. Not right in my head and still having the headaches so wanting to sleep so much.

I started making a real effort again on June 18th so almost a week now. Cannot tell yet if there has been any improvements , still have the headaches but not sure about my word loss cause I have not really seen anyone or talked to anyone.  I feel a bit better some days. Making my portions smaller and spreading out meals during the day has been a real challenge. However the weather has been so nice it has been influencing my meal choices, making it easier to want to eat fruits and vegetables.  I am forcing myself to try new things , make different meals , even though my body is craving my old favourites and warm carb meals like rice and potatoes.  My clinic recommended a work shop called “craving change”  they think it would be helpful for me. They have it in Vancouver but they are looking to see if there is anything similar here.

I have not done a blood test to see how off track I actually got , I think physiologically it is hard for me to take a blood test when I know my levels are off because as a kid I got in so much trouble and yelled at our ended up admitted to the hospital. So I tend to do a blood test when I know they are stable. I am working on this and hope to do one soon!

So this is where I am . Its easier to share now as I am taking steps to pull myself back up. It is a roller coaster though and its important to not feel alone, ask for help and reach out . It is not easy to do alone. I am trying not to be ashamed.

Thank you for listening and your support.

Hoping the next few weeks continue to get better and then my goal is to start lightly back into physical activity.

 

 

 


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10 thoughts on “My Confession.

  1. Hey Amanda
    I so know what you are going through. I am on holiday in Vancouver and know my levels are off as well – too much sleeping! One low pro meal at a time, eh babes :) You can do it!

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  2. Well, Amanda, you have taken your first steps–acknowledging the problem and then making a plan to help yourself: make a plan and then work the plan. Inside you KNOW you can do this. Inside you KNOW you WILL help yourself. I believe in taking things in small pieces rather than becoming overwhelmed by the big picture. Literally, take one day at a time and be proud of yourself as you help yourself. Plan ahead and push on through. You want this. You will do it; yes, you will. May God keep his hand on your shoulder, pretty girl. And here’s to Y-O-U because Y-OU are worth it!

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  3. You can do it! One meal at a time. I Manage my 3 year old’s low protein diet, but I understand the challenges of trying to stick to any healthy diet as a woman. I bet it IS all about the planning ahead- making your meals and snacks ahead if time each day. It is work- but you’ll feel better. I’ve never been a bathroom scale person. I bet if you focus on healthy you’ll get results. Sorry for your struggle. I’m sure you’re not the only one out there! Sincerely, Nicole, PKU mom

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  4. Hey Amanda,
    I think you are doing really good. I have a very hard time staying on track it is hard because I live my sister and her family so I am out if my routine. I am going through a divorce and I don’t have my own place yet to set everything up like setting my med out and calendars because every time I do she is wanting everything put back up and then I forgot it. I think you do a great job at keeping track. You are only human and we fall off track some times.

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  5. Hey Amanda, my name is Anne (25), i also have PKU and I live in Germany. I really like your blog and I hope that you will continue going on so well as you do. I do not have any problems with my pku at the moment, since 2 years I am pretty well. What helped me most was that I started doing lots of sports, like almost every day. That kept me busy, so that I even never thought about what to eat, rather it helped me focusing on a much healthier nutrition and the other hand, also had a positive influence concerning the phe level. how much are you allowed to eat every day?

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  6. Hi Amanda! Keep strong! Don’t give up! My son is 10 years old, he’s PKU, we’re from Argentina (so forgive my english). You’re our inspiration!!!! We expect we can send you some strenght through this post. Always remember you’re not alone… not only because of your family and friends, but also because of us….

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  7. Hi Amanda, you can do it…….I get you…you know exactly how to say and even how to link everything together. I should actually be saying the same as you are now… I feel lazy but I find the food choices hard to be consistant. I have had trouble even getting in my supplement the last few months. You are very inspiring. xx

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  8. Wow Amanda.. It’s like reading my own personal diary when I read your blog. Even the not catching my words, you described that so well. It is incredibly frustrating. I try to explain it to people that don’t have PKU that being on your game is like holding your breath… eventually I know that I am going to mess it up. I recently am on my game again and got one level down to 8 from being around the 20s!! I am also trying to exercise and trying to lose weight too. I am planning and shopping on Saturdays and prepping for the whole week on Sunday. It absolutely takes my whole weekend but it is so worth is for me to have a better week. I know that this whole phenomenon and all its challenges makes us lose hope and its really easily to slip into depression and hense all the sleeping. Really, we have to fight.. We can do this. I really want to thank you for having enough courage to be honest because it helps people like me know that I am truly not alone in this battle even though it feels like it all the time.

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