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Back on track again

Back on track again

Paul, our UK Mevalia blogger, explains in a series of articles how is life with PKU in his personal opinion.

So, the later stages of my school days were being lived out in a fashion where I had completely washed my hands of PKU, and I carried this way of NOT coping (with my diet) into my working life when I left school at 16.

The administration placements I found myself working in after school were very laid back, which was fortunate because I eventually found that line of work wasn’t suitable when I’m not on the PKU diet.

My concentration, and thought process, simply isn’t at the necessary level for me to be competent in that line of work while I’m polluting my brain with toxic phenylalanine every day, it’s as simple as that!

At the age of nineteen, while I was still off the diet, I was working in an office which wasn’t so laid back and, while working for this company, I realised my mind just simply wasn’t up to the task.

It was embarrassing at times!

I left that job after a year of feeling I didn’t fit in, but it was a lesson learned in the long run and I eventually became a wall and floor tiler, which (not meaning to blow my own trumpet here), I quickly became very good at.

Some of my bathrooms used to ‘WOW’ me, never mind the customers!

I worked as a tiler for several companies before then having a spell of self-employment, which was going brilliantly until the recession caused a drought in my second year.

One thing is for sure… I find it interesting how I excelled in a physical job whilst not being on the PKU diet, but failed miserably in a more intellectual job role.

That just goes to show how we are more likely to pick up on our cognitive PKU symptoms if we find ourselves doing office work, rather than a physical job!

There was very little thinking, or concentration, involved in my job while I was spreading blobs of ‘slop’ of the back of a lump of clay, then slapping it on someone’s bathroom wall.

It simply didn’t put my PKU symptoms to the test, like an office job did.

No wonder I was more suited to that line of work!

To make things even more interesting, I returned to the office environment when I found myself short of tiling work - but this time I’d be dealing with customers who are threatened by repossession of their homes.

Very intense, and I was still not on the PKU diet too! (Am I mad for doing this to myself?)

I was struggling to make an impact when I started out in that office, and I was just ‘keeping my head above water’. Then a few months into my new employment, my sister (who also has PKU) inspired me to give PKU another chance – and I’m so glad I did!

My sister had been through a PKU pregnancy and her efforts brought the importance of the diet back to the forefront of my mind, which sparked a curiosity in me about how I might feel if I was avoiding the foods that caused me harm.

So, I decided I would arrange contact with the dieticians at the Royal Victoria Infirmary, in Newcastle, and immediately took the diet seriously, sticking to my seven daily exchanges of protein.

Things were going very well, but I did have one hiccup!

While I was out and about one day (about two weeks after my PKU return), with no access to any PKU friendly foods, and only a Burger King being in my range of sight… I had a double cheese burger!!


This ‘cheat’ might have been the wrong thing to do at that time, but it became the most life changing moment of my PKU life - if not, my whole life!

I went to work the following day, after eating that cheese burger, and found those intense conversations with struggling mortgage customers weren’t going as well as they had been recently.

As I read the notes on a customer’s account, to help me justify my reasoning to the customer, I found myself getting halfway through the note, then having to begin reading it all over again.

I just wasn’t absorbing the information, and I was having a nightmare!

This was when I realised the impact of having high phenylalanine levels, and I instantly concluded that it wasn’t worth losing my mind just to conveniently satisfy my appetite.

I vowed to myself that I would never cheat so heavily again, and I never have done since – because that experience made me realise how much potential I’ve been blocking for so many years!

After returning to the diet I became a solid performer in that office, I began studying an English literature degree, tried my hand at stand-up comedy, and (although this isn’t intellectual) I also ran a marathon.

All these things were achieved over the period of a very short period after returning to PKU, and my working life has went from strength to strength ever since – with my studies, so far, going exactly to plan.




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