Author: Hannah Maxwell-Smyth

On holiday with PKU

Like everything else with PKU, traveling and holidays can be so overwhelming. Even if you don’t factor in the PKU, booking places to stay, arranging flights, getting to airports, and ensuring someone comes in to feed the cat—all of these require careful consideration! This is even more true if you’re a young adult or going somewhere alone for the first time. It’s your initial experience booking and packing for your own holidays, whereas usually your parents would take care of everything.

For those with PKU, there’s an additional layer of complexity. They have to navigate spending a week in the big wide world, where you don’t know whether there will be restaurants that can cater to your diet. Hotel staff often won’t have a clue what PKU is, and there’s the constant worry of having to explain, yet again, that it’s not an allergy or intolerance.

As a result, for someone with PKU, it can feel easier to forgo holidays altogether and stay at home. However, this is a real shame because, as the saying goes, “travel broadens the mind.” And it’s true—you don’t have to embark on a six-month backpacking adventure around the world. You can still enjoy and experience new places, cultures, and food, or simply have a change of scenery to give you a break—even if it’s just for a few days or a week in a cosy hotel!

So, through this blog, I hope to share my experiences—whether I’ve travelled with my parents, friends, boyfriend, or gone away by myself. The good news is that people and companies in the hospitality industry are often more accommodating, kind, and understanding than you might think!

Packing and PKU

Whether you’re going abroad or staying in the UK, packing for PKU is not really any different from packing your clothes. Personally, I always end up taking far too much underwear and an outfit for every circumstance—because apparently, I’m either going to change every single day three times a day, or I’m expecting a zombie apocalypse to happen at any moment. When it comes to my personal stuff, I tend to overpack. However, in the case of PKU, I believe it’s impossible to overpack.

The things I mainly take—regardless of where I’m going in the world—are low-protein bread, crackers, snack bars, and maybe pasta. Of course, I also bring my supplements. In addition to the amount I need for the time away, I usually take an extra two or three days’ worth of supplements, just in case we encounter unexpected delays. Whether we’re stuck abroad in an airport, on the road, or dealing with cancelled trains, it’s always good to be prepared (and hey, who’s to say there won’t be a zombie apocalypse?). I also make sure to pack one or two extra days’ worth of supplements in my day bag, as well as in my suitcase, just in case I get separated from my luggage.

Travelling in the UK

Travelling in the UK has numerous benefits, (as well as the politics of boosting local economy) and one of the biggest advantages is not having to worry about language barriers when describing PKU. You’re familiar with the local shops and restaurants, or having to handle airports and flying. Although staying anywhere in the UK might seem more expensive than going abroad, you save money by avoiding flight costs. Deciding whether to travel abroad or stay within the country for your holiday isn’t always easy.

One aspect I particularly love about traveling in the UK is the option to use Airbnb (other accommodation booking options are also available! This is just the one I use), which means for a weekend I basically get to have my own home away from home. No set times for breakfast or washing out my drinks in the toilet sink.

Renting a tiny cottage or apartment just for my husband and me means we have our own fridge, freezer, cooker, microwave, and either a front room or dining room. Depending on the Airbnb’s location, we’re usually close to a local convenience store or supermarket too meaning you can always pop out and get snacks.

I’ll never forget our honeymoon in Brixton, Devon. We had an Airbnb right by the sea at the end of March, just a few days after our wedding. Some days were warm and sunny, while others were rainy. Whenever the weather turned a bit too “English,” we’d head to the Co-op. He’d grab a big packet of salami, and I’d get a huge pot of olives. We’d then cuddle under a blanket, watching DVDs.

Having our own home for a weekend or a week also means we can bring food to cook—pasta, rice, baking flours for cakes or bread, and cold storage items like yoghurts, vegan cheese, or milk. It gives us the flexibility to cook meals the night before your big days out, rather than relying solely on eating out. While dining out is nice, it may not always be suitable for our diet or wallet!

Whether it’s a honeymoon, a girls’ weekend away, or a romantic getaway, booking an Airbnb provides the freedom to store everyday food as if I was at home. Plus, I have the comfort of being able to eat breakfast or dinner whenever I want, not just when the restaurant is serving.

Hotels

However, hotels are still a great option, especially as they tend to be cheaper and are perfect for short breaks. You’ll also be surprised by how accommodating hotels can be nowadays!

I usually stay in hotels with my mum when we have a girl’s weekend away. Whenever we book, Mum has always been able to contact them via email to explain my dietary needs and see what amendments are available. She’s even requested that a fridge be placed in the bedroom, which most hotels are happy to do for medication. Having a fridge in the room means it is perfect for storing milk, yogurt, or bread.

If the hotel can’t provide a fridge in the room, they typically have one behind the reception desk. They’ve usually been more than happy to hold any of my dietary items. On many occasions, I’ve gone to reception at breakfast time to ask for my milk or yogurt and give it back once I’m done.

Most hotels include breakfast, and for our convenience, it’s usually a buffet-style breakfast—perfect for someone with PKU! If I need exchanges, there are usually cereals available (I do bring my scales with me!) or cooked breakfast options like hash browns or beans. For protein-free food, they always offer freshly chopped fruit and a toast machine. Guests can toast their own bread to their preferred level of doneness. That’s why I always bring prescription bread on holiday. Toast is a great protein-free way to start my day and get ready for exploring wherever I am!

I also enjoy bringing vegan yogurt because hotels always have fresh fruit available. The combination of fresh fruit and vegan yogurt is delightful. Sometimes I even pair the yogurt with a little cereal. My mum and I also take fruit from the breakfast bar for snacks later when we’re out and about!

I think it’s important to remember that it’s okay to ask places to make accommodations for our PKU. It’s not putting anyone out or being awkward; PKU is just as serious as any allergy or intolerance. Also, at the end of the day, hotels want you to choose them for your holiday! They want good reviews that highlight their accommodation and friendliness. By allowing plenty of time to contact them and make any necessary adjustments, staying in a hotel can be a viable option.

Just because you’re paying to stay in the hotel doesn’t mean you have to dine at their restaurant in the evening. There have been many times when my mum and I have gone to a local supermarket, picked up some snacks for dinner, and enjoyed them while watching films or TV in our hotel room!

Eating Out

The wonderful thing about traveling now is the accessibility of the Internet. Before travelling, we can use search online to learn everything about the area and plan our itinerary, including things to do and places to eat!

Eating out is always an option, especially now that there are more vegan restaurants available. In a worst-case scenario, there are always reliable chain restaurants where I know I can have chips or my favourite salad.

Furthermore, one of my favourite things about going on holiday is the chance to try even more delicious food than I ever thought possible. If you visit big cities like London or Manchester, they have excellent ALL-vegan restaurants which blows my mind whenever I go that every single meal option is vegan!

Even in small towns, local restaurants or pubs offer a chance to step out of my comfort zone when eating out. This allows me to experience so much more of life, which is what holidays are all about!

(A side note regarding vegan restaurants: Be aware that some dishes can still contain a lot of protein due to ingredients like lentils, tofu, or soya. So always still worth checking the menu before going in don’t assume vegan equals low protein!)

In my next blog, I will discuss traveling abroad with PKU, visiting other countries for holidays, flying, and how I manage my diet despite language barriers!

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!)

Priorities

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.

Motivation

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

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.

Conclusion

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.

Returning to diet is one of the hardest but most important decisions that I have made for myself, for both my physical and mental well-being. It is so overwhelming the thought of going back to the strict diet after having the freedom of being off diet, putting those restrictions back onto myself, and learning how to do my diet all over again, so how did I manage it?

Dealing with the emotions

The beginning of my downward spiral to going off diet began with my drinks. I couldn’t face drinking them, and it wasn’t just the bad flavours, textures or smells which meant I kept letting them slide, or only having one or two a day thinking ‘that’ll do’; it was the emotional brick wall I was facing every time I had them. Having these three drinks a day makes me forever ‘different,’ that PKU is stuck with me for life and the memories of parents going “drink your drink, drink your drink.” I was spending all my precious energy trying to smash that wall down every time I had to have my drink, only for that wall to be built back up the next day. This emotional wall meant it would take me an hour or sometimes many hours to finish one drink, which meant it was warm and even more unpalatable. Never mind the other two that I also had to fit in that day!

It was my dad who found a way to break down this wall, to just get me back into the habit of doing the bare minimum, but the most important thing which was getting my drinks down me. He suggested when I had my drink, to set a countdown for 30 seconds and to just drink as much of it as I could in that time. No emotion or overthinking, just drink it. If it wasn’t finished by the end of the 30 seconds, then to tip the rest away, to just try again next time and it was shocking but it really worked! I think it was a shock and awe tactic with my brain. Focusing on the ticking clock made me forget the emotions and pain behind it. I just kept doing it until it was another emotionless driven habit like brushing my teeth or putting deodorant on. I’m still not perfect, occasionally the wall gets built back up, especially when I’m tired or I’ve had a tough day, but I know I have the skills now to get through it.

Food and cooking were no different. Ordering prescriptions from my GP and trying to cook and weigh food were again reminders that PKU is something that will always be a part of who I am. Especially when I had to weigh food, as it was a literal representation of how restricted my diet was. With food, it was all about making baby steps towards healthier eating. Not sitting there expecting myself to cook a whole vegan paella in one hit, not forcing myself to attempt to cook a roast dinner every night, it was just about the little wins. Challenging myself to cook one completely exchange free meal, replacing my exchange snacks with free to eat snacks from my prescription foods, so I didn’t have to worry about the emotions behind weighing or measuring.

As always, social media was a huge pressure. I saw pictures of low protein pies, risottos and stir fries and go “oh god, that’s what I should be making!” but I realised I needed to turn that pressure off in my head, that just because someone was maybe further ahead of me in their diet, doesn’t mean I was failing in mine. I reminded myself, as you have to with all social media, to be kind to myself, to give myself time to work up to that; again, making it all about these small steps to get over the emotional barriers.

Dealing with the practical

One change that I made, which helped me take the pressure off myself, was taking the time to find what vegetables I enjoyed cooking as well as eating. I recognise that before I would fall into the same emotional traps repeatedly. I would have a shopping cart full of veg (lettuce, cabbage, carrots, cucumber, sweetcorn, tomatoes, beetroots, suede, potato, peppers, onions… argh!) and I wouldn’t use any of it, not realising it was because it made me feel so overwhelmed. Of course, I wouldn’t and couldn’t have eaten all the veg quickly enough before it soon all went bad, so then I’d then have to go through the guilt of having to throw away food that would have been fine if I had only cooked it! I would do that nearly every week and then wonder why I was so upset all the time. So instead, I challenged myself to find two or three vegetables I know would work in any meal, and that’s it. For winter where I’d have warmer meals, like pasta dish or a curry, it would be peppers, courgettes, and radishes or in the summer when I was in the mood for salads it would be cucumbers, tomatoes and lettuce. I’d base my food shopping on what I fancied that week rather than ‘what I ought to be eating’.

I reached out to my dietician and asked her to help get my daily intake of protein back in control. She asked me to do an honest food diary, of exactly what I was eating, stressing that she wasn’t going to judge me or tell me off but just so she knew what she was dealing with first in terms of me returning to diet. What shocked me the most about doing a food diary was finding out the snacks that I had been eating were causing the biggest damage towards my exchanges! Whether packed in my bag for lunch or bought from the work vending machine, I thought they were okay because they were ‘only’ 1, 1.5 or 2 exchanges but it turns up if you have a few snacks like that a day, they soon start to add up. Rather than the 5 exchanges I should have been having a day, it turned out I was easily having 9-10 exchanges.

So I decided to try and cut those ‘heavier’ snacks out of my life, I replaced walkers crisps which were 1.5g exchanges each to Pombear crisps which were only half each. I replaced chocolate bars with fruit or fruity snacks for lunch bags that were exchange free, basically getting rid of anything in the house that individually over 1g of protein. No matter how good I thought I could be, if I had a pack of mini rolls in my cupboard or a 6 pack of crisps in my workplace draws, I know I had no self-control. I could easily eat through all of them without even thinking, but I can’t eat protein if it’s not in the house! So I just had to get rid of it all. What really helped me with this was the NSPKU website, which has great resources on all sorts of supermarket foods that are completely free of protein which you can replace higher protein items with.

For my supplements, I again reached out to my dietician team, asking them to send as many samples from as many different companies as possible to try. It’s amazing how much change the world of PKU supplements has seen just in the last few years, so it’s always worth trying as many samples as possible to see if anything new has come out that you may have missed, that could be so much better then what you’ve been on for decades! Looking online to see what others are having and what they recommend also helps. I know many of my friends have switched to the PKU Easy Microtabs because they heard about them from me before they even heard from their dieticians. Explore all the possibilities of what is new out there, whether that’s supplements or food!

Outside factors

One reason I went off my diet wasn’t just because of how difficult PKU was, but the changes I was going through in my own life. I now recognise at 16 I had a whole world of choice introduced to me when I was due to leave secondary school. I was choosing what job I wanted to do, whether I wanted to go to university or college, what course to pick, what friends I wanted to stay in touch with. I couldn’t help but have this overwhelming feeling that I could chose every part of my future, but not the part of me that was PKU. That part of me felt like it would be the same limited diet and world for the rest of my life. It was too much for my ‘immature’ 16-year-old mind to handle.

I was also away from the watching eyes of my mum; I was spending more time with my boyfriend and friends. Friends I wasn’t entirely honest with about how much help I needed with my PKU, that I felt I could ‘get away’ with being off diet. When my boyfriend and I moved in together at 20, this was heightened as I didn’t have any parents watching over me at all! As mentioned in my previous blog ‘Adulting’, I just wanted to be my own person, I didn’t want to live in this limited world of food and drinks, weighing and cooking.

When I decided to return to diet at 25, I started to see the positive effects of being on diet. I was no longer foggy headed, over emotional, I started to lose weight (I gained 2 stone in under a year being off diet). The scarier side effects like slurred speech, loss of concentration and making mistakes at work were starting to ease off. I was starting to realise that being off diet really wasn’t worth these symptoms. Even when I thought being off diet wasn’t affecting me, deep down somewhere it really was.

My friends and family could see how much better I felt in myself. The fog that was permanently over my head was finally lifting and that helped me realise, no matter how difficult the diet is, it is worth it and that I don’t have to let PKU get to me because there are so many more options for me and other PKUer’s now. I did find good things that could replace the unhealthy items, that my world was actually not so limited. My friends wanted to help me, they wanted to support me in anyway possible, whether that’s having snacks in their house or finding specific restaurants they knew I could happily find many things to choose from.

At huge chain restaurants there are now vegan menus available at nearly every restaurant, supermarkets are making their own brands of coconut based dairy products, there are so many PKU companies with whole ranges of food and supplements to try and even though the sugar tax has limited us in some soft drinks, supermarket own brand drinks and health-conscious drink companies are starting to use less artificial sweeteners. It’s a huge world out there for people with dietary needs.

Conclusion

It is so hard, to try and take away all that emotional burden and conflict I felt with cooking or having my supplements, but I know now that it is so worth it, to feel healthier, happier, and more in control of my life. I now know that it’s not the diet that controls me, but that I control my diet. My loved ones say they can notice the difference in me when I’m on diet, that I am less anxious and healthier, and I know I notice the difference in myself. So, I now make sure to get help from my husband and my friends, to ask them if we can go out to eat in places that are more suitable for me, to have food in the house that I can eat if I’m staying over. I ask them to remind me to have my drinks, to check in with me to see if I have done my blood spots; good friends want to help because they want to see you happy and healthy.

As much as social media can put unnecessary pressure on us to have a ‘picture perfect’ diet, it can also be an incredibly useful tool. I know from personal experience, the online PKU community is so incredibly helpful, the ideas, recipes and support shared without judgement is so precious. The NSPKU website also is invaluable as it has great resources, and dieticians are there for us and want to help us guide ourselves through the battle of returning to diet. I am proud to say that now I am back on diet, I am not just surviving, I am thriving and I’m sure in the future I will still have more struggles to face, more battles to fight and more walls to knock down, but I feel more prepared now than ever.

It’s so strange to write this, knowing that at the end of this year, it is my 30^th birthday, and well over a decade since I was actually a teenager! For me, the ages of 13-18 were difficult. Not only for PKU, but just with school and life in general. I’d love to go back to my younger self now and save her a few of those “you can only learn things the hard way” style lessons that life throws at you. This is exactly why I write these blogs, in the hope that my experiences may help others and help them feel like they are not alone.

What’s helped my confidence regarding my diet is realising I’m going to have blips, and that’s okay. It’s not the end of the world and especially when I was a teenager, I had so much going on in my head. I was trying to figure out who I was, what I wanted in life, education, boys, and going out with friends. I didn’t see PKU as my “special diet”. I didn’t want to be special. I just wanted to be normal, and this frustration definitely lead me down the path of going off diet.

On this note, if my parents in particular are reading this blog, this is a warning! I’m going to be very honest about my diet right now, so turn around now before it’s too late!

“Peer pressure” are the two words that every parent fears, regardless of if their child has PKU or not. Whether it’s sex, drugs or rock n roll; every parent fears their child getting in with the wrong crowd, especially when they are teenagers. I would say however with my PKU, peer pressure around food isn’t necessarily caused by others, but by what I would call ‘you pressure.’ Maybe I was lucky, but none of my friends ever forced me or bullied me into eating badly or to go off diet. They just left me to it, they had some basic understanding of what my PKU was and they let me get on with it. It was my own self that made me feel like I had to look ‘normal’ and to eat ‘normally’. For me, it was especially true when I was spending time with my boyfriend or going into town with my college friends for lunch. I suddenly had my own money, freedom and independence and I realised no one would stop me!

The more I ate, the harder it was to stop, convincing myself ‘one bite wouldn’t hurt’.  The problem with a ‘one bite wouldn’t hurt’ mentality is that my gauge for what one bite was would get wider and wider. Before I knew it, the sneaky chocolate bar would turn into a daily chocolate bar from the vending machine at work, or the odd biscuit at work, turned into helping yourself to the pastry treats someone brought in on a Friday. The occasional visit to the local kebab shop for a little treat turned into a weekly trip to get chips. The normal chips turned to cheesy chips and at one stage a garlic bread was added to my order!

I always say my biggest advice is NEVER eat cheese. It is so addictive, I joke to my friends that it’s like my drug! It’s just as tempting, addictive and damaging for me! The ‘not even once’ campaign can definitely be applied to cheese.

My friends and boyfriend probably also didn’t realise the extent of how far PKU goes, how strict I actually had to be and and if I’m honest, I probably used this to my advantage. I knew they wouldn’t call me out or tell me to stop like my parents of course would have. I wish I had been honest with my friends from the start but I was scared that they would turn into my carers, that they would feel obligated to look after me and scared to go out to eat. Because of this, I never asked for their help with my diet. I just got on with it, wanting to be independent but also wanting to be free. I recognise now that this was a big mistake but I’m proud to say the relationship I have with my friends now has greatly improved since then.

Fortunately, now in 2023, getting food out and about is definitely easier for PKU people than back in 2010 when I was in college with my own money at the age of 16-18. Pretty much every restaurant now has vegan cheese as standard. Being health and environmentally conscious is much more of a bigger deal, so maybe if teenage me was around now, I would have made better decisions for myself because there are now better options available?

I honestly didn’t think going off diet was affecting me for a long time. I didn’t even consider that I was going off diet, as I was still having some (albeit not all) of my drinks and my mum was still making and weighing the meals I ate when I was at home. As I have discussed before, there is no immediate allergic reaction to eating this food, so I thought I was ‘getting away with it’, but looking back, the damage was definitely being done.

How I feel now vs how I felt then, it’s obvious going off diet was negatively affecting me. I was very emotional, erratic, unable to focus, clumsy, tired all the time, foggy headed a lot of the time and if I had really gone too far, the next morning I would be slurring my words. I don’t want to think of the damage it was doing to my brain. I think the thing that finally pulled me back was realising, it just wasn’t worth it.

As delicious as this naughty food was, or as good as the feeling of being independent was, none of that was worth it. Not the food hangover I was getting, the feeling of literally losing my mind, the weight I had gained (I gained around 3 stone in just under a year!) and how a sudden change in diet completely ruined my teeth! I went from only having one or two fillings to a whole mouthful of metal, because I was eating textures and foods that I had never had before. I just wish I had realised all of this sooner rather than later.

It was never just about how delicious the food was (although it doesn’t help when you’ve had a lifetime of growing up with bland PKU prescription food) but more so what was going on in my head. I wasn’t a confident person. I was bullied through the majority of my school years due to my ginger hair, I was struggling to get on with my mum (as most teenage girls do!) and at the end of school, I was making those ‘big life decisions’. What subjects I should pick? College or 6^th form? University or work? Your whole life is in front of you, which options should I take? The one thing I had no choice on was my PKU. Going off diet when you’re a teenager is just another way to take control of your world, to help find your own identity away from the label you’ve been given all your life. My go to line when describing going off diet as a teenager is “Other teenagers’ rebel through drink and drugs, PKU teenagers’ rebel through doughnuts and pizza.”

Something that I understand better now is that although peer pressure didn’t affect me much as a teenager, we can make the choice to have healthier friends. Our diet is important, it needs to be taken seriously and that means it has to be considered at all times. My friends now, who know my past, know how easy I am tempted by eating bad food, and know I’m trying my best to stay on diet. My friends will now make sure to ask me what I need if I’m visiting them or if I’m staying over the night. They will go out of their way to ask if I need any snacks, what fruit they need to have in the house, or if we go out for the day, they will remind me to make sure I pack my low protein food snacks as well as normal food. They will pick and find vegan restaurants in the area we visit for me to enjoy, so we can still have a nice meal out without having to compromise on my health.

I’ve realised I have to stop myself from feeling guilty, like I’m being selfish or putting them out of their way and from feeling like I’m forcing them to do this for me. They aren’t! They want to do it because they are my friends, because they love me and they want me to be healthy. True friends will make that effort for you and your PKU, because my PKU is just as serious as any other condition.

For example, if I had a friend with a peanut allergy, I wouldn’t consider it rude if that friend asked me to no longer have peanuts in the house or if we wanted to go out for a day, I know I would check for restaurants in the area that were allergy friendly. PKU is no different and it’s okay to let your friends do that for you.

PKU can really show the red flags in a friendship. I’ve had friends in the past that weren’t willing to be flexible with where we eat, or whenever I would visit, we would only ever get take away. Sure it is a nice treat every now and then, but for me it could not turn into a weekly habit. They just wouldn’t think or want to put the effort into having PKU friendly food in the house.

What’s interesting is I find that with the friends that aren’t willing to accommodate for my diet, we tend to fall out over something else in the long run, so the diet and how they handle it is a big red flag that this friendship won’t work long-term anyway. So now I understand that asking for help is okay, no matter at what stage of your life, and a good friend will want to help you with your diet – a bad friend will not.

I am a huge advocate of making parents aware that their PKU child will probably go off diet at some point. Whether that’s just cheating occasionally, sneaking food, or going full blown out for a cheese pizza with their friends. You can’t have a whole childhood of control and not expect some kind of push back during those years when you are at your least confident and most vulnerable to bad decisions. To used a clichéd example, it reminds me of parents who are incredibly strict with their children through their childhood, only to find that at the first taste of freedom, the child struggles to cope with it and very much “rebels”.

My personal concern is that consultants or dietitians may not be honest with the ugly side of PKU. Maybe they don’t want to scare parents or worry them about what their child will do regarding diets and lifestyle. I believe that education around PKU is critical for parents. Arming them with information and understanding is always the best way forward. My mum said at the NSPKU conference one year she heard Eileen Green say ‘blips in the diet are okay! And they do happen!’ which really helped her accept that things weren’t perfect all the time. I really hope that any parents of children, teenagers, or young people with PKU understand that unfortunately, you cannot protect your children forever. They will definitely learn lessons the hard way, just be there for them when it goes wrong, with open arms and understanding!

For those growing up with PKU, teenage life, including going to college or university, hanging out all hours with friends or having a partner, it is a whole new life of independency that is exciting and new and one we don’t experience before. With our food, diet and life being so strictly controlled, it’s only understandable that my first taste of freedom was the taste of glazed ring donuts. I wish that I had been more open with my friends, more willing to ask for more help to keep me on the straight and narrow, and to realise sooner rather than later it’s really not worth coming off diet.

I really do hope life is easier for those growing up now with PKU, restaurants are more accommodating to dietary issues, there is more vegan food readily available in chain restaurants and there are so many different options for prescription food.

Believe me when I say though, you definitely aren’t alone in wanting to just eat everything and anything! Most PKU adults have been through what you are going through at some point. None of us are perfect, there is no perfect follower of the diet, no matter what we portray online.

You know your diet better than anyone. Feel confident that you can explain it and be open & honest with your friends. You will know the good ones from the bad ones quickly with how they accommodate your needs. You’re going to make mistakes, you might cheat on your diet, but that doesn’t mean you’ve let yourself down or it’s the end of the world. it’s important we learn from our mistakes and try to do better, even if it means learning the hard way.

We also now have the wide world of social media! If you don’t feel you can be honest with your parents, or your friends, then reach out to the PKU community! This diet is hard work, and no one should have to face it alone – no matter what stage of their life they are at!

You’ve got this, being on diet is always the best way to be.

If you ever need someone to talk to my inbox is always open on twitter (@Clairbear42) or Mastodon (@ClairTheGinger@pkutalk.com).

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

The sun is out, the trees are lush and green again, and the daffodils have been and gone. It’s official… Spring has finally sprung, and Summer will be following shortly!

With the change in weather and heat, I find that I’m not in the mood for the big heavy meals that I would eat in winter and autumn like soups, pasta bakes, hot pots, and lasagnes. On a warm summer’s day, the last thing I want to do is hang around the oven and cook big meals for a long period of time, so I thought I would share my favourite summertime meals that are perfect for a sunny day & my top tips to make them even better!

Salads

Summer is always the perfect time for a salad. There is no cooking or baking required, just chop up a few veg and throw them together! I think a common mistake when trying to prepare for salads is having too many different types of vegetables: radishes, mushrooms, peppers, tomatoes, lettuce, cucumber, the list goes on. It is great to have a wide selection of veg available but then you’ve got a fridge full to use before they go out of date, and you are left eating salads every day for the next few weeks.

I now make sure to shop week by week, taste by taste, and only buy the veg that I know has multiple purposes. For example, I know to always buy tomatoes and peppers as not only do they work in every salad, but they can also be used for curry or pasta sauce. On a week that I fancy an avocado salad, which requires cucumber, I’ll make sure to get just enough to last for that week, not buy 3 because I’m over excited.

The great thing about salad is that it’s versatile to suit your exchange needs! It can be completely free of protein with just the chopped vegetables, or you can add extra protein, whether that’s a few scoopfuls of canned sweetcorn, tinned potatoes or smaller bits of normal cheese.

When making a salad, it is important to add fats. If you are not adding protein, it’s very easy for the salad to be too low in calories & not very filling. This is when vegan cheese, olives, vinaigrette or even avocado come in. A favourite tip of mine for avocado salad is to add some Violife Greek style white block cheese.

Cold Pasta

We all know that the real fun of making pasta is that you never make the right amount. You mean to make a portion for yourself, and you end up making enough for a family of 4. I however use this to my advantage using the extra to make a meal for the next day.

There are a few great ingredients you can add to pasta so you can have it hot or cold, meaning you can go straight out in the sun and enjoy your lunch! The ingredients I like to add to cold pasta are:

• Tomato paste with herbs
• Chopped fresh tomatoes with herbs
• Gluten free pesto (18g = ½ exchange)
• Violife cheese

Side Dishes

I love adding a side dish and dips to a hot meal, such as jacket potato. Olives, vegan cheese such as Violife Greek block or vegan Babybels make a great addition. My personal favourite side dish is guacamole, which is always better made fresh in my opinion. I love it with oven fries, crisps, gluten free pretzels.

My perfect guacamole is made with ripe avocado, lime juice, a finely chopped small portion of onion, and tomatoes. For an extra kick, I have been experimenting with adding a small amount of chilli pepper. For Christmas, I was gifted a Ninja Chopper, which is a gamechanger for making any kind of dip or salsa although I need to experiment more with making the salsa! If the avocado is ripe enough (or overripe) it is easy enough to stir it all together in a bowl with a spoon.

Fruit

You can’t talk about a summer meal without mentioning the classic fruit salad! What’s great about vegan products coming out is that not only are there so many different options for cheese but also for cream and yoghurts. I have named a few below but the list honestly goes on with the majority of these being around 0.6-1g of protein per 100g/ml, so you can have pretty big dollops of them too!

• Elmlea Plant Double Alternative To Cream (0.6g)
• Food Heaven Whipped Spray Cream Vegan (free of protein!)
• Swedish Glace Vanilla Non Dairy Frozen Dessert (1g)
• Koko Dairy Free Greek Style Yogurt (1.1g)
• Koko Dairy Free Plain Yoghurt (0.6g)

One thing I’ve enjoyed adding to my morning yogurt breakfast is compote, which is surprisingly easy to make. It lasts quite a while in the fridge and adds some much-needed sweetness to any desert!

All you need is a bunch of mixed berries – blackberries, strawberries, blueberries etc. Chop them up into smaller chunks, add to a pan with 100g of caster sugar and a few tablespoons of water and then bring it all to boil. Once it’s boiling, lower the heat for the berries, simmer for 5 minutes and that’s it! All you need to do is place the mix in an airtight jar, leave it cool with the lid open and then once cooled pop into the fridge, ready to spoon into any desert required.

Conclusion

We all love summer, whether it’s the hot weather, going on holidays, trips to the beach or just sitting in our back gardens on a summer evening. We can enjoy eating outside at a family BBQ, taking a delicious, packed lunch to work to eat in the park or simply enjoying a snack at home in the comfort of our garden. Managing your diet in the summer is important and hopefully some of these ideas can help you enjoy it at the same time!

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

The world has changed a lot since the Covid-19 lockdown back in 2020, and as much as it was an incredibly scary and strange time, there were also some positive changes that came out of it. One of the main ones being how we work and commute. So many jobs have been reimagined so we can work from the comfort and safety of our own home.

For a lot of companies and professions working from home isn’t an option – for example mechanics, doctors, builders etc. However, for a lot of industries, working from home not only makes sense for the employees, but also the employers. They no longer have to spend money renting out huge office areas or be limited to only recruiting from in their local area – they can now recruit both countrywide and even potentially worldwide. The changes have had significant benefits for employees as well. They no longer need to commute to work, saving thousands of pounds on commuting costs (which is also good for the planet!) and in turn, have a lot more flexibility for a home/work life balance.

When the lockdown originally began, I didn’t work from home myself. I was put on furlough until August when I went back into the office, but I noticed that working from home was being taken more seriously in the job market. In 2022 when my job was no longer really working for me and I was applying for other jobs, it was my friend who suggested the option of remote roles where I could work from home, so I applied, was successful in finding a new job and have been in that role for over a year now!

Working from home is definitely a personal preference, some people like the commute, the change of scenery from the house and they do enjoy the social side of an office or working space. For me, I really have enjoyed working at home, having my own space, not having to commute, and not having to worry about other people distracting me.

There are also many benefits to remote working from a PKU point of view, and I would really encourage others with PKU to explore these roles if you’re looking for a new job or work within a role or industry where you could potentially change.

Of course, it’s not an option that is open to everyone, but I wanted to share the benefits and the negatives of what I have found so far with PKU and working from home.

Benefits to Working From Home

There are no temptations.

At every workplace I have had, there’s always been either a café or vending machine to tempt me into buying a quick treat, or even on the way to work, it’s just so easy for me to pop into a newsagent’s and grab myself a bag of crisps, or a chocolate bar. It certainly is much easier than trying to cook pasta first thing in the morning or have a cooked meal, where you have to wait your turn for the microwave at lunchtime. Unfortunately, once I started opting for the quick treat,  this is a hard habit to shake.

I discovered when I was trying to keep track of my exchanges that a bag of crisps may be 1.5exc or a chocolate bar 1exc and t’s shocking how quickly those 1-2exc snacks start adding up.

Being at home, I am in total control of what I keep in my kitchen and in my snack tin. I make sure to never have any snacks more than ½ an exchange so that if I do snack, it’s not impacting my diet. If I really am desperate to go to the shop to get something I shouldn’t, it means I actually have to force myself to go outside, when I could stay cosy inside.

I can have my substitutes at any time without an explanation needed.

What I have really enjoyed about working from home, especially in a brand-new job, is that because I’m by myself I can have my substitutes at a time that suits me. I can set loud alarms to remind me to have them without disturbing other people and I don’t have the nightmare of leaving my substitutes at home, praying I have spares in my desk. Importantly, I also don’t have to go through the usual barrage of questions, which as fun as it can be to answer and raise awareness, sometimes I just want my PKU life and my work life to be separate. It can be really tiring having to explain every time you get a new job what the substitutes you are having are, which of course then leads to questions about your diet, food and your general health.

I can eat food at any time I need it.

I can have any snacks at my desk, again without questions of why am I just eating a box of plain crackers, why I’m only eating fruit, or what’s in my sandwich. As well as that, with my PKU diet I find the best thing for me is eating little and often. Working from home means I can just get up, go downstairs, and grab food from the fridge whenever I need it, without having to make up an excuse like making a tea round for other people. I can just go eat food!

I can have better home cooked meals, there’s no more sharing a microwave or forgetting your lunch at home.

This is a big one, as going into a job on a daily basis, I would try to have a nice big low protein meal but it can be so tiring to find time in the morning to cook a big meal or prepare a salad, as well as getting ready and leaving enough time to commute. Even if you do all that, you could still annoyingly leave your lunch at home, meaning you either have to spend money on snacks that have exchanges or go hungry the rest of the day.

Once you get to work and the lunch bell has tolled, there’s nothing worse than finding there’s a huge queue for the microwave when you only have half an hour to cook and eat your lunch. Now as well as snacking through the day, I tend to have my big lunch at the end of my day (at 3pm) where I can make a pot of pasta, prepare a completely fresh salad (nothing worse than a warm soggy salad!!) or stick one of my bulk meals in a microwave and watch tv while it cooks. This way, I can now take my time to eat my meal, rather than trying to scoff it down in only 15 minutes.

The dreaded tea rounds.

If I was trying to be good on my diet, I knew the first thing I’d have to kick from it was normal cow milk in my tea and coffee, as a splash here and there does add up. The number of times I’d have to explain to confused colleagues that my milk was in a small carton, or I just wanted hot water for my herbal tea or black coffee with sugar and yet, despite this, there would always be one person who just couldn’t get it. What I found annoying (being annoyed at this is very selfish, I know!) was having to do a whole tea round for everyone in the office when all I wanted was just some hot water for my herbal tea bag. Again, now I’m at home I can have whatever variation of tea, herbal tea, coffee with PKU milk that I want and not only that, but I can also have them all in my favourite big mugs with no need to worry they’ll be used, stolen, or broken!

More freedom and time to experiment with the diet in general.

Like being able to make fresh meals, the time saved in commuting means I also have the energy to experiment with my meals, meal planning, prepping or organising myself around my PKU diet in general. For example, I have my fridge food diary and can fill it up as and when I eat, or I can put a slow cooker on all day making a bulk cook curry, knowing I’ll be in the house.

 

Negatives of Working from Home

Of course, it would be dishonest of me to say there’s no downsides to working from home, so here are a few I’ve found so far.

The social side of being in a workplace.

As much as it sucks having to explain over and over again your condition and why you eat weird food and have weird drinks or tablets, occasionally I would find people in a workplace that don’t just see you as some weirdo or ignore you. Many people can be really supportive and want to ensure that I was okay. They’d ask if I needed any help with my PKU and remind me to take my drinks or microtabs. I do miss that face-to-face element of support that can be lost working from home.

I think if I went straight from school to a work from home job, I would have missed out on the confidence that explaining my diet and answering those weird questions gave me. Now that I’m confident in myself and on my diet, I do just want to be left alone. It is a catch 22 of enjoying being by myself but there are elements of the social workspace I do miss as well. Generally the fun you have with people in a workspace, for every person who can be a wind up and annoying/rude, there are also people who are just wonderful to be around.

Forgetting to eat as much because you’re NOT packing a lunch box.

Even though I’ve said how useful it is being able to eat at home, it does also take discipline to make sure you are eating properly. The number of times I have genuinely forgotten what I’ve got to eat in my cupboards is silly; like if I have fruit in the fridge or what snacks I have in my snack tin. With a lunch box it does have the benefit of gathering everything together in one place so I can make sure I am eating everything, and nothing goes to waste. Knowing I can just go downstairs and open a cupboard does sometimes make me lazy. I’ve tried a few variations of putting a lunch box together or putting notes in the fridge to remind me what I have in there but it’s something I didn’t think would be an issue when I started working from home.

With no commuting there’s less exercising and getting out of the house.

This has been a big one for me. I am fortunate to live in a small town with a number of industrial parks and so the majority of jobs I have had, have never been more than a half an hour walk/15-minute bike ride away. This meant I would be walking for over an hour every day. Working from home means I don’t do that anymore. In the winter it’s a blessing not having to walk in blistering cold or pouring down rain but it’s very easy to forget I’ve not been outside in over a week or done any exercise. I now have to make sure I do my best to prioritise exercising and walks, whether it’s for my physical health or just my mental health of getting outside of the house every now and then.

 

Conclusion

Working from home is not for everyone. It may be that your job simply isn’t suitable, or it may be that the downsides such as the non-social aspect are too much for some people. However, I’ve personally found, when it comes to the PKU element of my life working from home has made my life a lot easier.

I’m glad I’ve done it now at the later point of my PKU experience. I think when I entered the world of work, it was good to have that face-to-face interaction, to know what support a workplace can give you and what support you need to ask for. It also can be fun to raise awareness with other colleagues and I know I’ve had some great discussions and opened people’s eyes to life with PKU. Nevertheless, constantly raising awareness and being an advocate can get tiring, especially when at the end of the day you’re just trying to do a job so you can pay your bills.

I personally have really enjoyed being in my own space, where I can look after my health, without having to explain to anyone what I’m doing and have the energy and ability to experiment with ideas. Whether that’s setting myself alarms knowing I’m not disturbing others or being able to work with my own routine and appetite.

More and more workplaces are now offering remote working and are being flexible to allow their employees to work from home. I believe that having the option to work safely in your own space is a really positive one for those with conditions and it’s definitely a change that has been for the better whether it’s improving work life balance or even just employees being able to save money in commuting. Working from home may not be for everyone but it’s definitely something I think should be available for anyone.

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

I’ve spoken before about PKU blood tests – how frustrating the wait time can be and how it all feels very backwards, compared to other diet related conditions. For example, with diabetes you normally assess your blood levels and then choose what you want to eat, rather than eating and then assessing how you’re doing based on your blood levels afterwards.

But as well as the physical battle of trying to keep on diet to keep my blood levels low, there’s also a different battle going on. There is an emotional battle in my head whenever I receive my blood test results.

The whole month I could be following my diet to the letter; tracking everything that I’m eating, keeping notes of when I’m taking all my substitutes, avoiding take aways etc. So, when I send off my monthly blood spots, only for the results to come back saying they were a lot higher than I was expecting, maybe even over the recommended target, it can be really gutting.

Upsetting to the point where I just want to cry, scream “what’s the point?!” and order myself a big take away to eat all my sorrows away (understanding that this will make my levels even higher, of course.) Unfortunately, I know it’s not just me that has had this experience, it happens to us all. To quote Beauty and the Beast, this is a “tale as old as time” when it comes to PKU.

 

Before – The Lies

When I was a teenager, around the age of 15-17, I was just trying to get on with life. I was studying for my GCSE’s, going to college, working in a charity shop, maintaining relationships and generally, trying to get on with life. I was wanting to fit in with friends and go on days out or holidays, so I would eat whatever I wanted, regardless of the negative effects.

In college I had lost all routine. I struggled to get the drinks down me and I was struggling with my diet. I had brain fog, I struggled to keep my emotions in check and could see the untaken drinks piling up.

I knew I was losing track; I didn’t need my blood level from the dietitian to know my bloods were high, but I didn’t care. It was the price I paid for a ‘normal’ life. Add these emotions on top of all the teenage hormones running around in your blood stream, telling you ‘it’s you versus the world’, feeling overwhelmed with studies or relationship issues. Getting blood results back just proved what I already knew – that I could not escape from my PKU and what I was doing had consequences. The high digits made me feel like if I was failing at my PKU, and I was also failing at my life.

Not only that, for some reason I strongly suspected my dietitians were judging me. They were asking me why my levels were high and if there is anything they can do? In my head, they knew I wasn’t sticking to my diet and I knew they knew, and were angry with me. I was angry at them for being judgemental, that they couldn’t know what I was going through. I struggled with this diet every day on a basic level, and they saw me just once every 6 months/year. What could they do or how could they possibly understand what it’s like?

Eventually, this mental angst would rise up every single time I did my blood test. I knew, I wasn’t sticking to my diet, and so doing the tests I knew my blood levels were going to come back high which completely put me off doing them at all. It felt like the high result was inevitable no matter what and I didn’t want that email from the dietician calling me out on it. I felt shame, shame I wasn’t doing well on my diet and that the blood results proved this for all to see.

The problem with this was that before I knew it, I would go months without doing any blood tests at all. At my next appointment, the dietitians would ask why there was a delay in blood spots, so my doctors had no idea what my diet was doing. When I went to my check-up they would question it, offer to help and the consultant would ask their usual question of “how are you doing with your diet?”. I couldn’t answer this question honestly, because the answer was I was doing awfully. To be honest even being asked that felt wrong, like how can your everyday life, emotional, mental, and physical struggles with a metabolic condition be summed up in one answer or in a 15-minute doctor’s appointment?

They told 16-year-old me that, “You just need to have your drinks and stick to your diet and your levels will come down.” It was so frustrating to hear this over and over again, like it was just ‘that easy’ to get control of my diet and to take my drinks. I still wasn’t able to, and I didn’t feel I could be honest with my dietitian or doctor because of the fear of shame, so I would just always answer “I’m fine, my diet is fine.”

Teenage me felt that I was doing everything I could to stay on my diet (as much as I wanted to anyway), but I was burying my head in the sand and ignoring my issues. What’s worse is I didn’t know how to ask for help, so I figured what’s the point of trying? I might as well just eat what I want because my levels would be high either way?

Now – The truth

The truth is that my dieticians and doctors didn’t understand what I was going through because I wasn’t talking to them. I wasn’t asking for the help that I needed because I didn’t think they would understand or be able to help. I remember the first time I was finally honest and said “look I’m actually really struggling and I don’t know what to do” and my dietitian & I sat down and went through my diet and what we could do.

The more I’ve opened up with my dietitians, the more help they’ve been able to give me. Whether it was completing a 1-week food diary to see what can be changed, helping me to get me the foods I need with my GP, sending the latest food products for me to try or just having regular check in calls to see how I am. I even asked if I could do more regular blood tests to help get my levels down and they said that would be fine!

It turns out they weren’t judging me over my blood levels and thinking I was ‘failing at life’, they were just keeping an eye on my health! It’s important for me to remember the only contact my dietitian/doctors have with my diet is my blood levels. If they are to spike and continue to be too high, it could mean something is very wrong that needs to be dealt with and there is no judgement behind the phone calls or emails.

Yes, a more regular testing system would be helpful; a home testing system would be even better so we can do on-the-spot testing. Maybe there’s better ways dietitians and doctors can open the floor, so patients can have a more honest conversation. However, in the meantime, it’s important for me to remember that just like the number on a set of weighing scales, it does not represent my body shape, type, or how ‘healthy’ I am. The monthly blood test is just a digit, an average of how I’m doing. it does not represent my whole PKU life.

Just like weight, there can be so many factors to a high or low level, and if the level is consistently high then I need to be working with my dietitian to try and improve it for my own health. The high level may just be a one off but what if it isn’t? What if I’m innocently eating/drinking something I didn’t realise had high protein? What if I’m doing all the wrong kinds of work outs? What if I have an infection and I don’t realise?

I have good months and bad months, just like good days and bad days and like everything, it’s about finding balance in what works for me whilst also maintaining my health. If my levels aren’t great this month, (even when I thought they would be!) it’s not the end of the world. There is always next month to try again! It’s just another part of PKU life that needs to get done to keep myself healthy. The digits do not define my whole life or my whole PKU experience.

If I could go back to my younger self, I would tell them that it’s okay, that yes, this diet is bloody hard! But you’re not alone. There are people that can help as long as you ask for it, so you don’t need to make yourself feel alone. Of course, the doctors can’t understand what it’s like to have a metabolic disorder, but it doesn’t mean they can’t help.

The digits do not define me but how I react and respond to them do.

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

It’s January, so that means it’s time for “quick everyone run to the gym!” due to all the lavish food and sweet treats we consume over Christmas. This is a blog I’ve wanted to do for a while, but I wasn’t sure how to word it, as I’m not a personal trainer or a workout expert and I’m certainly not a dietician. I’m just a regular person with PKU who has a work from home job on the phones. Who am I to offer fitness advice or tips?! I may not be able to offer the secret to a ‘perfect body’ or the top five super foods to boost your immunity, but I know what I can do, is share what I’ve done, what’s helped me and hope that maybe it will help others. So here are my top 5 tips around exercise, that I’ve found help me get fitness into my life.

1 – Try anything and everything!!

Exercise is not a one thing fits all, as everyone has different fitness goals, energy levels and abilities. When people think of getting fit, they immediately assume getting a gym membership is the only way to get a fitness routine going but that’s definitely not the case, especially as everything is so financially tight, not everyone can afford a gym membership right now. Great news is, there are also so many free resources available to try as well as paid ones which can be affordable. If something doesn’t work, just keep trying until you find the one that does! The resources I’ve used so far are:

• YouTube tutorials – there’s one for every kind of exercise, whether it’s yoga, Pilates, HIIT or dance routines. I used these during lockdown and tried to do one every other day. The great thing is, if you don’t like the way one youtuber does their routines or their voice, you can try another!
• Mobile Apps – there’s so many free apps with a range of dance workouts from 7 daily minute workouts to “do a split/get a six pack in 30 days” (not too sure about that one but you get the idea!)
• Setting my daily routine with a few basic exercises I can do in my front room – 5 push ups a day challenge or 30 second plank or 10 squats
• Exercise routines found on TikTok (often easy, fun, and short!)
• A walk in your local park
• A bike ride around your local area
• Home exercise equipment – you can buy all sorts of cheap equipment now online and in supermarkets such as weights, exercise bands and kettle bells.
• Gym routine – doing 3 sets at the gym using their machines – 1 day for legs, 1 for arms and 1 for cardio
• Swimming once a week
• Exercise classes (often done in local school halls as well as gyms!)

A lot of gyms will have a free trial day, paid apps have one-month free trial (just remember to cancel!) and online videos like TikTok and YouTube tutorials are endless, I just had to keep trying until I found something that made me look forward to exercising. Which brings me to my next point…

2 – If I don’t enjoy it, I won’t do it!

There is so much to try and to experiment with, I found a great starting point to help build an exercise routine was when I made myself a whole list of exercises to try out. Squats, burpees, push ups, sit ups etc. The most important part of going through that list was making sure that I binned any exercises that I just hated doing. It doesn’t matter how good jogging on the treadmill, doing planks or burpees is for the body, if it’s making us dread exercising every time we think about it, it’s no wonder we never get it done!

If I don’t enjoy a class or find I am not motivated to go to it, I just won’t book it again in the future. I don’t see it as a failure just that I’ve not found the right thing for me.

For me personally, I prefer going to the gym to exercise, even though it does cost money and a lot of the workouts I do could easily be done in my front room. I’ve just realised this past year I cannot focus when I try to exercise at home, I need to have a separate place to get my head in the right place to exercise, which is why I enjoy the gym. But if you don’t enjoy something just keep trying different options until you find something you do.

3 – 1% is still better than 0% and 1% gives you room to grow!

With exercise it can be very tempting say “if I join the gym, I HAVE TO GO EVERY SINGLE DAY FOR 3 HOURS” or you see people online doing 10 push ups every day, going for a jog twice a day, doing a 30km bike ride. Seeing all that, I know it can make me feel like what I’m doing isn’t enough, with my one session of yoga in the morning or a walk around the park; seeing that it can make me feel like if I’m not doing enough, what’s the point of doing it at all?

What helps me, is to focus what I’m doing rather than trying to compare myself to others, remembering that it doesn’t matter what I’m doing or how often I’m doing it but just knowing that I am at least doing something. I know a 10-minute walk around the park is still better than nothing. I start off with getting myself out there and then once I’ve got comfortable, pushing myself to maybe do a longer walk or try and run it, has been not only the best way do an exercise routine but actually kept me going week after week.

I’ve tried time and time again to give 100% from nothing, thinking that push will motivate me to keep going but it really doesn’t work. There’s nothing that puts you off exercise faster than telling yourself you have to do 10 push ups and go for a run every-single morning, then finding out your only physically able to do 3 push ups, this leads to you just opting for a sleep in, which in turn makes me feel like I’ve failed and puts me off ever trying to do it again.

It’s all about small steps, putting a little bit of a effort every day, giving that 1% to then aim higher, rather than reaching too high too quickly and falling. Even if it’s 1 push up a day for a week before moving to 3, then a month of 3 before moving to 5, pacing yourself can make a huge difference in getting over the battle of not wanting to do it. Eventually after enough time I can feel myself getting stronger and it may lead to those 10 a day, but knowing I’ve pushed myself in the right way makes me feel so good and keeps the exercise routine sustainable.

4 – Tomorrow is a new day and Monday is a new chance to try again.

As much as I know it’s important to keep an exercise routine going, I can just have days or weeks where I just don’t have the energy, emotionally, mentally, or physically to do it. Again, this can really mean I get stuck in a guilt trip of then feeling too guilty to ever start again or just writing myself off that if I do try again, I’ll probably just give up like last time.

I try to conquer this by knowing that my last week does not have to define my next week. Monday is a new week, a new chance to give it another go. I also do this with my diet, if I’ve had a bad week of eating or not taking my substitutes, I know I can give it another go next week, missing one day or one week of exercise is not the end of the world!

5 – Remembering that it’s not just for my body, it’s also for my mind

I know for me, exercise isn’t just to help with fitness and to make me “swole” or thinner, it also really helps with my mental health. That feeling when I push myself during exercise to further than I thought I could go is really wonderful and it’s amazing how going for a walk, getting some fresh air and spending time with nature, really does genuinely make feel better all over.

I also find after a really good workout in the afternoon or evening, I sleep so much better because I’ve tired out both my mind and body and better sleep is always a good thing. There’s something special about actively going out of my way to do exercise that helps me feel like I’m doing something, that I am in control of and makes me feel good, even if I don’t lose any weight or gain any muscle, the fact I’m doing something, I’m taking action to help myself even if it is, that 1%, is still better than nothing.

Conclusion

Over the past few years of my exercise journey, I’ve discovered the worst thing you can do to yourself is force yourself to do exercise you don’t like, with the belief that the pure idea of “but it’s good for me” will push me along, but good intentions are just simply not enough. To actually create a habit of exercise, it’s got to be something I enjoy, something I look forward to doing, so it becomes a part of my weekly routine as much as going to work or doing a food shop.

Also, the best thing I can do for myself with exercise, and with life in general is just go easy on myself. Life can be pretty difficult sometimes (especially these past few years!) whether it’s financial worries, getting overwhelmed with what’s happening in the world or just feeling overwhelmed in general with my PKU. Just because I miss one day of exercise doesn’t mean it’s the end of the world, tomorrow is a new day and Monday is a new chance to start again.