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 Spending more time withdrawn and at home by myself.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.

When I was a child my momma signed me up with Medic Alert Canada with a life time membership. This is something they no longer do and my membership has been grandfathered. Which means it cannot be changed. I wore a sports bad medic alert bracelet as a child in elementary school. I do not remember what it said. I was also to young to understand the importance of a medic alert and how useful they can be.

When I started college to become a license practical nurse in 2009 I made the decision that it would probably be a good idea that I wear one again. I figured that with my history and medical issues that it would be my best interest. If anything every happened to me and I could not speak for myself or was badly hurt the first responders, paramedics and medical staff would know right away that I had PKU. Many people ask why me why? they say they are not going to feed me if I am passed out so why does it matter?

My answer to that is you never know what could happen to you or how others may respond. For myself I am so sensitive to my diet and eating that If I do not eat regularly I become very sick and can pass out. Like a diabetic almost. Diabetics who wear medic alerts people can read them if they are having symptoms and know what to avoid giving them and what not to due.

My bracelet also included my account code and a hot line number. Anyone can call that number and have my file pulled up with special instructions. I have spent a lot of time in the hospitals over the years, and many trips to the emergency. Though I have not been in a situation where I have needed it, It is comforting to know I have it if I need it. To me it is as important as if I was carrying an epi pen. It also included my allergy to codeine. ( a none PKU Allergy I discovered I had the hard way during a trip to emergency. )

I have not taken of my bracelet since I had first put it on. Almost 5 year. This past week it broke off my wrist and I lost it. This created a panic attack for me and I was desperate to have it. Luckily Cole found it under the couch and we where able to get it fixed. It looks like an o ring got caught on my wool blanket and broke off. The rings have become weak with wear.

My bracelet says :

PKU needs special diet

no Aspartame or Phenylalanine

Alleric : Codeine.

When I lost it and thought I was going to have to replace It I wanted to change the wording to be more detailed and include :

Phenylketonuria:

Allergic to phenylalanine and aspartame .

requires medical low protein diet and formula.

However I cannot afford to replace mine yet and am happy to have it back. Really made me think more about its importance, at-least to me . It is of course personal choice.