Looking back on the different stages of my life, as a thirty-four-year-old PKUer, phenylketonuria certainly brings its challenges in various ways. In my late childhood I experimented with foods I shouldn’t be eating, I completely ‘washed my hands’ of the diet in my teenage years, struggled with my efforts of returning to the diet in my early twenties, and now – after successfully returning to a PKU lifestyle - the challenges are mostly staying organised and dealing with the social aspect of adult life with PKU.
So, when does PKU become easy?
If I was asked whether I was happy with my PKU lifestyle right now, I’d say “yes”.
Not because I feel it’s easy, or I deal with it in a different/better way than anybody else, but mainly because I really do feel the benefits of my phenylalanine levels being where they should be.
I feel I can now work at the level of my potential and really give myself a chance of doing all the things I want to be doing – and that feeling far outweighs any challenges I encounter in my day to day PKU lifestyle.
Despite being happy with the way things are these days, I still don’t feel this is the easiest time of my PKU life. I have had an easier time, while still adhering strictly to the diet, and that ‘easier time’ was in my childhood.
Let’s face it…
At the time of our lives, before we begin heading to the shops without our parents (experimenting with chocolate bars and ice-cream), we simply don’t know any different.
We have our meals made by our parents, which may be a different meal to what they’re eating, but we know we are on a special diet and they’re not. We accept it!
We know our friends at school eat different foods to us at lunchtime, but we understand they’re not on a special diet either - so we accept that too!
We are given a set way of living when we are diagnosed as babies, and it only becomes difficult when we start to become more independent in the later stages of our childhood and we begin to open our minds to other possibilities (for me that was around ten-years-old), and the real personal PKU challenges began at that point.
We all need to become independent to grow into adulthood, so this difficult stage is a lesson we all need to work through. Some of us might stay strong with PKU through that period of life, but, if you do begin to eat the bad things (like I did), handling PKU can become more difficult as you may begin to develop adverse eating habits and resentment towards the condition.
This is exactly what happened to me, but if you find yourself in a similar position, it can get easier again.
After turning your back on PKU, knowing (deep down) your actions are not having any positive effects on your life, but holding you back instead, the way to make PKU life easier is to accept it again - just like you accepted it as a child, when you knew nothing else!
It sounds so simple, doesn’t it? (If only it was)
I found my return to PKU, in my late twenties, brought a better performance in the workplace and the beginning of doing other intellectual activities, which I never previously believed I was capable of.
For me, at that time of my life, and ever since, there could have been no better reason to accept PKU again – and it has genuinely transformed my life.
All the things going on around us, the temptation, the peer pressure, the social inclusion, etc, are all external influences - but it is only the way we feel inside that really matters!
We can learn from our younger selves by remembering how we didn’t allow ourselves to be affected by these ‘external influences’ in our childhood. We were happy and strong enough to prevent them from affecting us, before then being weakened and misled by society in the very next stage of our lives.
If we accepted PKU as children, we are strong enough to do it all over again!