What is PKU? Is it a disease or a condition one has to live with or is it just bad luck. To me, someone who has had it for 19 years, it’s just a small part of my life. I don’t consider myself different from anyone else out there. You could say it’s just like having a lisp, or wearing glasses or even just being short! The one thing I do know is you just have to get on with it. In fact, as someone who wears glasses, I would say this is a bigger handicap for me. I am a keen sports person but was never really able to pursue my love for football. I tried contact lenses but my eyes never really took to them. Now, I am a keen runner and I am on my fifth marathon.
I think it was much harder for mum and dad than it has been for me. They were carriers but never knew about it till they had me. My brother and sister are both fine: but hey, I am fine too (I just wear glasses, oh and I have a special diet).
The hardest thing for me has been this first year away at university. I have always been fairly good with my diet but being away from home and learning about life means you have to try knew things. Having PKU at school was much easier: I grew up with many friends who knew about my PKU, so I never really had to explain it.
At University, I was all alone (like many of the new starters) in the beginning. I didn’t want to stand out too much so I did make the decision to go from XP Maxamum to Phlexy 10 tablets. I just felt it would be easier for me, and it has been.
Most people think I am a vegetarian: it’s only really my close friends and the guys I share the kitchen with, who know I am PKU. There is no problem what so ever.
Funny, I have re-read what I have written and although I started trying to big myself up about PKU it is clear that it was a bit daunting to start off with going alone. Clearly for me I should not have worried, anyone else out there doing the same sort of thing should not worry too. The biggest problem I do have is getting hold of my prescriptions, particularly the low protein products. I only have access to a small cupboard in my communal kitchen, so most of the stuff is stashed under my bed. I usually go to the chemist with my empty rucksack and just pile it in there.
An introduction to the demon drink has been an education in itself: learning about aspartame and alcohol has given me a better understanding of this vice! I have been known to let myself go every now and then. I finally ended up getting a job in a bar: it meant I could still socialize (in a way) and not have to come up with an excuse for not drinking; my running has been another excuse for not drinking too.
When ever I go out eating I opt for the vegetarian meal: I don’t make a fuss about what’s in it, I just pick around the food.
My first year is almost at an end. I’ve had a few downs but many more ups: just like all my other friends. I am still on diet and although I religiously take my tablets I have gone off track once or twice with my exchanges. I’ve got another big challenge coming up this summer. I want to travel around Europe for 6 weeks, but I am only going to have my trusty rucksack. I’ll never get all my stuff in the one bag so my mum is pulling her hair out, but it’s something I’ve got to do. I’ll let you know how I get on