12/05/2022
What PKU feels like....
- It’s when food is always on your mind.
It’s planning your whole day around food.
- it’s having to find the energy to cook meals for yourself separate to what your family is having and trying to keep it interesting enough so that you are motivated to stay on track.
- It's avoiding food that you dont know the protein content for.
- it’s constantly checking the nutrition panel on foods to see what the protein content is to see if I can eat it
- It's turning down offers of food you CAN have that your friends made just for you because it doesn't fit your plan that day. Or food that your employees offer at your job as a thank you!
- It’s "it’s ok, im not hungry" when you are starving and there are no safe choices.
- It’s a formula that people constantly remind you that it looks and smells disgusting - like we don’t know already!
- it’s making sure you get every ounce of forumla your suppose to drink throughout the day. With out forgetting or becoming too busy for it!
-it’s feeling too tired and depressed to drink your formula even tho you know you’re blood protein levels will go up if you don’t and having constant anxiety that food is killing your brain
-it’s seeing clinicians that often know less about PKU than you do and have little understanding of just how hard the diet is because they don’t have to live it EVERY. SINGLE. DAY
-its wondering if you’re getting diagnosed properly because you have so many medical conditions secondary to PKU and your doctor doesn’t understand that they are associate with it
- but it’s also seeing a dr for something else unrelated and it being automatically dismissed at being linked to or caused by your PKU (this just happened to me the past few months, after complaining for years, got to admit, this sucked)
-its having a lot of anxiety about seeing any doctor because they don’t know anything about how PKU affects your brain
- It’s feeling really sad and emotional but having no idea why.
- It’s products in your grocery delivery that you spent hours carefully picking out being swapped for something you can’t have. Or shopping in the gluten free section of the grocery store and hoping the foods you pick out are good and low enough for you phe tolerance
- It's trouble holding a real time emotional or thoughtful/intellectual conversation or debate.
- It's trouble thinking some days.
- It’s the feeling of utter exhaustion but never getting time for a rest/nap.
- It's the sinking in the pit of your stomach when you realize you have been eating too much protein and you will have a PKU headache and cloudy mind for the next couple of days.
- It’s laughing off being very clumsy when levels are high to hide from everyone how much it actually worries and frustrates you.
- It's the long wait to see if you are eating healthy enough and your blood levels are staying within a safe level.
- It’s weighing or measuring EVERY SINGLE THING that goes into your mouth.
- It's the social separation from your friends
-its constant anxiety no matter how much you wish It would go away.
PKU is not for the weak, but I value those that walk in the same shoes as me. And I'm thankful for those people that do understand more than anyone.
