Goodbye PKU

When I was nineteen, I had the opportunity to move into my own flat. At the time, I was getting totally swept along with my new-found social life and freedom. I had so much to discover. Having the chance to get my own space, and be able to break free from leading a double life; it was just too big an opportunity to turn down. It was exhausting trying to be a PKUer, as well as stepping out into normality.

Leaving home was hard. I had little confidence in myself, and I felt guilty that I needed my own space, but I was desperate to find out who I was. My life had changed massively in such a short space of time; it was completely overwhelming.

Getting the key to my flat was such an exciting moment. It was a huge leap towards PKU freedom for me. I have always had huge respect for my parents and the sacrifices they made for me. All the time and hard-work they put into giving me the best chances and opportunities in life. My admiration and deep-seated appreciation for their unrelenting love and support meant, I had a tough time sharing my feelings and experiences with them, despite struggling with my PKU at the time.

With experience, I now understand that one of my reactions to high Phe (Phenylalanine) levels, is to withdraw from interaction with people. I can now only wonder if that was a contributing factor to me moving out. In my head it was never an option to let my parents down in anyway, and I have reflected over this decision for many years. As I have long regretted my impulsive move from home, I hadn’t planned it at all, the opportunity just dropped in my lap unexpectedly, with a job offer.

Looking back now, I can see the battle that was going on in my head before I was even fully off the PKU diet. I was deep in conflict with myself. I was already dealing with the onslaught of anxiety; I just didn’t know it.

Food became a way of me celebrating my freedom. It wasn’t just the freedom of food choices, but my freedom from PKU. I had broken the chains. I’d paid my dues! It was now time to go forth and stuff my face!

Imagine growing up mainly eating nothing but fruit and vegetables. That continuous soft and/or crunchy texture, repeatedly. Back in the eighties, there was only UK grown seasonal vegetables available. It was nothing like the range you find today. Now you can buy fruit and vegetables from all around the world, and at any time of the year. To put this into perspective, back then you couldn’t even get Tomatoes during the winter season! By the age of eleven the most exotic fruit I had eaten was an orange.

In 1988 the Kiwi was imported, en masse, into the country. This new exotic fruit swept across the country, used as a show piece to impress friends and family on dinner tables, in homes all over the UK.

Envisage growing up eating only foods prepared from scratch, constantly baking and batch cooking for the freezer. The dietary foods, including ‘PKU’ biscuits that were so sweet you could only manage one at a time. They were rock-hard, dry, and shattered into crumbs on the first bite. The ‘PKU’ wafers were like eating the box they’d arrived in (literally like cardboard). Then also having to take three times daily, a bitter, sickly-sweet supplement; it tasted like something you’d fertilize the roses with, and left you with the most horrendous bad breath all day, and literally rotted your teeth out.

 I used to make milk out of my supplement to use in coffee. This totally trumped eating it in its original state, which was a paste (almost like having a mouthful of wet sand!). I remember once, working out that a single mug of my coffee when I was a teenager, had the equivalent of seven teaspoons of sugar in it! I challenge anyone to go and make themselves a coffee with seven teaspoons of sugar!

PKU freedom meant, at last, real biscuits and real pastry, eating with limited effort, minimal preparation, and cooking. As you can imagine, I went at it hard! Stuff my face is exactly what I did. Starting with my first night in the flat, I celebrated by having my first ever Fish and Chips! It was the batter that had always intrigued me the most about the fish. If Cod had still been the same as I’d remembered it in the eighties, where I recall watching Mum and Dad picking the bones out of their mouth and piling them on the side of their plate, I would probably have never given fish a second thought. Seafood has never appealed to me in the slightest but offer me traditional Fish and Chips and I would have literally torn your arm off for it!

Every day was a celebration. Everything I was deprived of eating growing up is what I ended up living on. Some days, I would sit down for lunch in my flat with a ‘Pyrex’ bowl of party sausage rolls! I would sit, munching away and watching the tv at my leisure. No more rushing through the door to check the house was clear, before grabbing food in a massive hurry. No more standing at the window watching out for early returners!

This was a whole new world to me and brought a completely fresh enjoyment. A new satisfaction to eating. Savouring food was a totally new experience for me; I’d been so used to rushing. I’d rush, in a panic, so not to be caught. I’d rush eating my food in public because I was paranoid that people were watching me, or notice I was always eating. Or I simply rushed my food just because it tasted so horrible. It was a case of getting it down my neck as quickly as possible!

As a young child, I remember many prolonged dinner times where I had picked over my food. I would eat all the best food first and then play the ‘I’m full’ tactic, but Mum wasn’t standing for any of that nonsense! I would sit there chasing it around the plate for what would feel like forever, but Mum always won on her terms.

As I grew older, I realised that if you mixed the food you didn’t like on your plate, with the food you did, it really helped. The problem was that, often, there was more bad food on my plate, than there was good. Whilst doing this makes perfect sense, it also meant I never got to enjoy the food I loved, because I would end up using most of it to mask the foods I hated.

I started disguising the flavour of things with the use of ‘Tomato Ketchup’; I was literally having it with almost everything. I would put it on toast, in sandwiches and with most of my dinners. This resulted in me going through a long phase with the most horrendous mouth ulcers; three or more at a time, and they were big too.

The continual plague of ulcers ultimately forced me to ease up on the Ketchup. Forcing me to change my approach to eating once again. This time, I decided to start eating all my least favourite foods first, but as quickly as possible! Saving all my favourite food until last, so I could enjoy them. However, this new strategy (which has stuck with me right up until present) was to create a new problem and lead me to the path of over-eating. Regardless of how full I was after eating all my least favourite foods, I was always determined to eat all the good stuff, because I deserved too (I’d earnt it, right?!). This often left me feeling bloated and uncomfortable after food, whilst feeling extremely content.

Before I started this blog back in March, I would have described myself as a complete foodie. Now I begin to question my relationship with food (despite it being the best it has been in a very, very long time). I know that I still have a bad relationship with food, and I need to understand exactly where I am on my journey, and how I can work on improving my relationship with eating.

If you think you’re suffering with an eating disorder or have concerns about someone else, I have provided a link below for the ‘National Centre For Eating Disorders’. If you have PKU and are concerned about your relationship with food in any way, please talk to your dietitian. There are more people struggling with eating disorders within the PKU community than you may realise. You are not alone.

https://eating-disorders.org.uk/

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