Moving with PKU: Get ready

Welcome to the first of Soheb's blog posts. Soheb also has PKU and is an active member of the online community. He has combined his IT skills and PKU knowledge in several ways to help himself and others manage their PKU.

These include the PKU calculator to help manage exchanges and supplements through out the day, and the associated PKU Talk forums. Soheb has been known to whip up neat software programmes on the whims of the PKU community to make it easier to follow NSPKU’s supermarket food messages.

In these two blogs, Soheb discusses the challenges of moving out of home with PKU and offers his top tips & encouragement:

Part one: Get ready

Take a deep breath.

Moving out can be pretty intimidating in itself, but when you have PKU, it can feel incredibly intimidating. Especially if, like myself, you have rarely cooked and had often relied on the help of others to help you manage your PKU (by the way, there is no shame in admitting that).

If you are considering moving out into a new place, there are a few things you will need to think about carefully. Hopefully as I go through all of this, you will feel more prepared and more relaxed about the possibility of moving. I want to say, however, if you haven’t done all of these things or even any of these things, don’t worry about it. A part of moving out is finding your own groove and re-finding yourself in the process of it all. Take what I’m about to write as guidelines and an encouragement to help you consider other possibilities in moving out rather than as strict ‘do or do not’ rules.

Relax and enjoy yourself!

The thing with PKU that I’ve noticed is that nearly everyone who has PKU tends to overthink things to the point of almost being paralysed by decisions at times. I know I’ve been stung hard by this and it was one of the reasons why I really avoided moving out in the first place. Here’s what will happen as you live out.

You will make mistakes. This is inevitable, but it won’t ruin you and it doesn’t define who you are.

You might go past the crisp aisle and see the bag of Doritos Lightly Salted crisps with the salsa and think “hmm, I haven’t had that in a while, but I’ll be sensible and only have a bit at a time.” So you buy the massive sharing bag of Doritos and dip only to get home, watch a movie or play a video game or something whilst absolutely demolishing the contents of that bag of crisps and dip.

You might go to the cinema and think “hmm, I haven’t had popcorn in a while, I’ll get the small bag.” You pick up the small bag only to get convinced to buy the large bag as it’s like 1p more expensive (thanks, cinemas). Then you go into the theatre only to wolf down the whole bag of popcorn before the film is started and you are dying of thirst from the salty popcorn.

You might find a restaurant that is all about doing hamburgers, but you end up going every other day to this place buying chips and onion rings, completely baffling the waiter and the chefs in the process.

You might even find a local Chinese restaurant and stuff your face with lots of vegetable spring rolls and the greasiest chips known to mankind.

Dear reader, I have done all of these things. Furthermore, I have done these things for days, weeks, and even months to the point where it affected my concentration, my mood, my focus -all of that jazz. None of that matters because...

You will grow from being independent.

You live, you learn, you laugh. All of these things taught me something down the road that had I not ever moved out, I never would’ve grown as a person. Like how I learned to do blood tests by myself. How I managed to fit in cooking my low protein lunch every day while working in dinner. How I became a gym addict and became stupendously fit in the process from struggling to climb one floor to easily traversing 3 floors of stairs with ease. Moving out helped me to learn all these things. And learning helped me to managed my diet with my lifestyle.

Moving out meant I was ready when life had to change.

My daily life moved on from the cosy normal to travelling to London for 3 days for a learning/networking event, meeting clients, and even going on dates. Even if you don’t take these things as far as other people, there’s always that little taste of experience you’ve had so that you become wiser to the next time you are faced with the situation. Which brings me onto...

Things will always get better.

I know, it almost sounds laughable given the state of the world right now, but it is true. When I was 10, the only supplements available were Maxamaid and Maxamum. I used to have this in a thermal flask which

1) made it horrendously warm and disgusting and

2) made me look like the Hunchback of Notre Dame carrying that around in secondary school.

Eventually I was introduced to PKU Express which came with a tiny little green cup with a lid. That was a game-changer. Now I had this little discrete thing I can easily take and actually live a normal life. It has been such a pivotal moment for me that I sometimes refer to my current supplement, PKU Sphere, as PKU Express out of sheer memory muscle.

Blood tests used to be this awful, agonising thing where I’d prick myself repeatedly with this stupid pen lancet thing. But now I have these individual lancet things which I use once and seems to draw enough blood to convince people I’m turning water into wine.

Give moving out a trial run

If you don’t feel comfortable living out, give spending a day or two out a shot - the NSPKU annual conference is a great first step towards that kind of independence. If you have a similar conference in your country, I suggest you should take it and meet up with some PKU people! It will be great, and you’ll learn so much from the process!

I hope you get something out of this, but if there is any one thing I can hope you get out of this, it is to:

think less and do more.

Normally, I wouldn’t offer this advice to anyone, but like I said before, the PKU community (myself included) tends to overthink to the point of paralysis.

It can be tempting to place all these feelings of frustration, conflict, and fears of the unknown at the feet of PKU. And quite honestly, I completely get that. I suspect if I didn’t have PKU, I would probably be a radically different person taking all sorts of crazy risks and whatnot.

That’s not to say I didn’t take any crazy risks. I clearly wasn’t managing my PKU very well beforehand when I jumped head-first into a small box room on my own. At the time, it didn’t feel like such a monumental leap, and in a way, it still doesn’t feel like that. It’s only when I think about the person who I am now that I can trace it down to taking those steps in moving out on my own terms. The key thing to remember is that we can’t let what we eat define who we are and control our future.

Mistakes will happen. You will have high phe. You will have brain fog. You might be a little clumsy and bump into things that are blindingly obvious. You may even have mood swings. But here’s the thing, you will have these things even if you sat at home all day and did nothing.

If you want to move out, go for it. If you don’t want to move out, that’s fine too. But whatever your choice is, don’t let PKU the reason why you do or do not do something.

Soheb’s blog will continue next week with helpful advice on getting ready to move, whether that means leaving home for the first time or for a family with a PKU-er moving to a new place.

**Main image used with thanks to BSD for sharing their work on Unsplash.