Becoming an independent person is one of the best and scariest feelings in the world. Whether that’s finally getting your own place, moving in with friends, a partner or going to university. Either way, you’re finally away from your parents and have the freedom to choose what you do, how you want to live and what to buy. You want Walkers branded crisps rather than cheapest alternative!? You go for it! You want friends’ round for a film night until 3am? No more asking permission or worrying about disturbing other people. Want to clean your house while blasting out heavy metal at stupidly loud volumes? The world is your oyster! However, as well as the best feeling, it is also one of the scariest because YOU GET FREEDOM OF CHOICE.

I realised this when my boyfriend and I first moved in together. There was no parent to tell or remind me what to do, which meant I had to make a conscious choice to go to bed at a good time so I would be wide awake and productive the next day, to wash up after each meal so I didn’t have stacks of plates everywhere, to eat healthily and cook a meal rather than get a takeaway every night. I had to set my own boundaries and keep myself in check, as there was no one to rescue me if I didn’t set my alarm and sleep in making me late for work!

This gets 10 times more overwhelming when you have PKU, as you may have had 18, 25 or 30 years of your parents taking care of your meals, bugging you take your supplements, or waking you up to go to work. Even if they did try to make you as independent as possible with your PKU and work life after a certain age, you know they would still be there to keep one eye on you, to keep you on the straight and narrow. With your parents around, you could never stray too far off the correct path without them stepping in.

So, there I was suddenly, aged 19, sitting with my boyfriend in our rented flat, with our Xbox and TV set up on the floor as we didn’t have a tv stand yet and we’re both tired from just finishing work; still not done the washing up from the night before. I’m starving as not only do I not have the energy to cook, but I also don’t have the energy to have my evening supplement, and so my boyfriend turns to me and says, “take away?”

Unfortunately, if you’re not careful and have no one to keep an eye on you, one takeaway turns into every Friday, which then turns into every other day. It was the same with my supplement. One missed drink, turned into two missed a day and then turned into the bare minimum of “well at least I’ve had one today!”.

So, 11 years later, what has changed? What have I done to organise myself, to help my diet and my routine, so I can be a functional and thriving adult with PKU? (For most of the time!)


As I have said before, the biggest thing about having my own place and independence is that I soon got incredibly overwhelmed trying to get everything done. As well as maintaining a complex diet, there’s also cleaning, tidying (which are not the same thing!), washing clothes, running a car, budgeting my income, socialising, maintaining my mental and physical health. It’s no surprise that too soon I get burned out and just abandon everything, to ignore it and just go with the easiest option, which is not bothering to cook, not bothering to take supplements and to just grab a takeaway.

It’s all about prioritising. I’ve realised now that before I do anything else, my PKU must come first, as without my supplements and food, I don’t have the energy to get anything else done. For example, I know I need to have my first supplement before I do anything else in the morning, as that is what will give me the energy to be able to focus on what needs to be done next and I can also gauge how hungry I am to know what to eat with what exchanges I have available.

Once I’ve had my supplements and I’ve eaten, I can then set realistic goals and priorities. I can sit down and ask myself, what jobs need doing in that day? I’ve realised I can take the pressure off myself by knowing I don’t have to clean the WHOLE house every single day. Today, I just need to put the clothes wash on and hang it, empty the dishwasher or I just need to vacuum downstairs. The smaller I make my daily list, the more time I allow for each individual job. By not trying to squash everything in, in as little time as possible, the less likely I am to get overwhelmed and burnt out. Either way, I’ve learned the hard way if I don’t look after my PKU first, if I don’t prioritise my supplements and food, then I don’t have a chance to look after myself or anything else.


It’s also been about finding the right motivation to keep myself going, to stay on diet, to keep on top of my home chores. For me the right motivation is not just “because you should” or “cause it’s good for me”. With both house jobs, I had realised the motivation for me to keep my house tidy was simply that the tidier my house, the less likely I am to lose things, to find places to put specific things like my keys, so I can save myself time and energy manically searching for those things whenever I leave the house. The same with cooking, I found the more effort I put into making better meals, the less I rely on take aways which saves me both money and my blood levels from going crazy.

It was the same with my PKU, I started seeing the negative effects of not having my supplements, (something that our parents probably wish we didn’t have to learn through experience) and now I’ve come out of the other side, I am back on diet and having my supplements I can see the change in me, I can see how much easier I can focus, how less emotionally erratic I am and I’m not constantly having this underlying anxiety about what damage I’m doing to myself. That gives me the motivation to keep going with it.

My biggest motivation overall, is that anything I do to make an active and positive change, makes me feel like I’m showing love to myself, by giving little gifts to my future self. Whether that gift is bulk cooking meals like spaghetti or curry, so on those days when I really can’t be bothered to cook, I don’t have to think or dive into my bank account, I can just put something in the microwave and have a nice filling meal that will be so much better for me. Or maybe I give myself the gift of washing up and tidying before I leave the house, so when I get home later, I walk into a clean and tidy house knowing I can now just rest. Not doing it because I ‘ought’ to but doing it because I want to, and I know how much better I will feel later for doing it.


Organisation doesn’t mean having a complete written out plan for every meal and for every day of the week, or an extensive to do list for the house on the weekend that must get done. For me, it’s putting in those tiny steps of organising and buying those products that save precious time and energy that I can then put to good use elsewhere.

For example, having an electronic vegetable dicer rather than chopping veg for making pasta sauces or buying frozen prechopped veg that can just be stuck in the pan to be boiled. Having my supplements already packed in every bag I use, big or small, so I don’t get caught out when I’m out and about.

Buying an excess amount of food containers so when you do want to bulk cook, you’re not running out because the used ones are still in the dishwasher. Getting a whiteboard for your kitchen and counting your exchanges on a tally chart so it’s clear and visible rather than trying to load a whole excel spreadsheet. Having a timer on your phone or getting a cheap smart watch just to remind you to have your supplement.

Maybe it feels like a waste of money, it’s excessive or even can feel like you’re cheating, but as far as I see it, no matter how big or small, if it gets the job done, if it gets me organised, gets me fed and gets my supplements inside me, that’s all that matters.

It’s okay to have ‘bad’ days.

So, my systems are in place, I’ve got my bulk food in the freezer, my gym bag is packed ready to go after work but for whatever reason, when I wake up, I just can’t be bothered. Maybe it’s the seasonal blues when it starts getting darker in the evenings, or maybe the day before work my manager really laid into me and I’m dreading going in this morning.

On those days, I must remember I can’t be perfect all the time, that it’s okay to leave the vacuuming for another day, that when I get home after work, I can just go straight to the couch and play xbox all evening and not think about what needs to be done. I also need to remember that on those days I am allowed to ask for help, that I can ask my husband to cook for me, or if he’s had a bad day as well, we can order in take away and it doesn’t mean it’s the end of the world. Just because I have one bad day, it doesn’t mean that there’s no going back or that I’m a failure forever.

If I had a bad day or a bad week even, I always try to say to myself, tomorrow is a new day and next Monday is a new week. I know that tomorrow, I can get all my supplements in me, I know next week I can cook better, I will make sure to go to the gym after work and I will feel great for doing it, but right now, it’s okay that I can’t.


I think the biggest thing about ‘Adulting’ is being kind to yourself. We have so much going on in our lives, so much to think about, compared to when we were kids or young people, whether it’s work, the cost of living crisis, our friends, our career goals, our own mental health or our partners wellbeing, as well as living with a complex and difficult diet.

Whether being kind to yourself means putting routines in place so you can give your future self a tidy home to come back to or just admitting today is a bad day and you’ll start again tomorrow, or most importantly, just reaching out and asking for help needed. The true secret of being an ‘Adult’ is that no matter what age, career or living situation people are in, NO ONE has it all figured out yet, we are ALL just guessing as we go.

There is no magical age when you turn 18, 29, or 55 where you suddenly get the carrier pigeon of truth, holding the meaning of life, the universe and everything and suddenly you FINALLY understand how to be the most productive and perfect version of yourself.

Know that despite what you see or hear online, everyone really is just as clueless and is also just trying to do their best to get by. The most important thing is that you are doing whatever works for you and being proud of yourself for getting through the bad days as well as the good, tomorrow is a new day to try again.

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