Re-Building my PKU Mindset

About three years ago, I embarked on yet another journey back into the world of PKU. I call it a ‘world of PKU’ because it often feels like I’m living in an alternate reality, since stepping away from all the forbidden food that I had come to call normal.

Before I started this journey a few years ago, I had once again been away from the diet for about 10 years. My binge eating had peaked during this time, and I had gained over 10 stone in weight. Not only was I struggling to buy clothes to fit me, but I was continually growing out of them. It was like being a teenager all over again.

Consequently, my health deteriorated. I wasn’t sleeping properly at night; I was tired and struggling through my days at work, having to stop and nap during my hour-long commute to and from work. I even got to the point I was having to sleep at work during the day. I was having to hide my work van in the country somewhere, just so I could safely sleep without being spotted. I was a mess! Eventually, after having to leave my job due to ill health, I was diagnosed with ‘Severe Obstructive Sleep Apnea’. This is when your airway collapses completely (due to being overweight, particularly around the neck) blocking your airways during sleep and forcing your body to wake up. After the sleep investigation, I was told that I had stopped breathing on average 87 times an hour, throughout the night! One of the worst cases they had seen in that hospital.

Since my diagnosis, I have been using a CPAP machine, which delivers a constant flow of air through a tube and mask; creating enough pressure in your airway to prevent the tissue from collapsing. The CPAP machine changed my life overnight and allowed me to return to normal sleeping patterns and daily routines. Now the CPAP machine goes with me wherever I sleep and will continue to until I can reduce my weight sufficiently and stop my airways from collapsing.

The best thing about trying (and failing) to return to the PKU diet as many times as I have is learning some big lessons along the way. I was adamant I wouldn’t fall into the same traps again. Previously, I always started the PKU diet feeling incredible in days, and within a fortnight I was replanning my whole life around the new me. Simply because I realised I could achieve so much more; and I wasn’t wrong, I could achieve far more. At least, until I stumble away from the diet and then my entire world implodes around me. Leaving me in chaos, unable to cope with my current situation.

This time when I returned to the diet, I had a very different approach. I started off being very realistic and with a new mindset. In the past, I have made the same mistake of getting on the diet, feeling fantastic, and immediately changing everything in my life, because I was feeling invincible. I would be either chasing a promotion at work or studying for a new career. But all I was achieving was to set myself up for failure. This takes me back to my last blog ‘Living with PKU‘, where I talked about not being able to consistently fulfill my potential.

Being realistic and knowing my limitations has been the key to me not putting too much pressure on myself, whilst returning to diet this time. I knew there were going to be tough days ahead, where sticking to the strict diet was going to be impossible for me. I had to learn to accept that. I set off with the mentality that no matter how bad a day had been, tomorrow was a new day, with a clean sheet. Regardless of the previous day, I would always get up and have my supplement and my daily allowance would start from zero.

I also had to accept that following a bad PKU diet day, would probably mean achieving very little or even nothing the next day. This has been extremely important for me, and over time it has brought home that a poorly managed PKU diet one day, equals low productivity the next. This is the cycle that I need to break to consistently fulfill my potential.

Being kind to myself has given me time to adjust to the changes of returning to the PKU diet. It’s only recently I have realised that I am starting to choose not to stray from the diet, especially at times when I would have previously caved into temptation.

There has been a lasagne in the fridge for 2 days now, left from my non-PKU daughter’s dinner. It’s winked at me several times, but it’s still there. Two years ago, that Lasagne wouldn’t have even made it into the fridge! I’ve chosen to leave it there on more than one occasion, and this is because I had important things to do the next day, and I knew I needed to have a clear head so I could be the best version of myself. Enabling me to fulfill my potential.

I was very foolish all those years back to think I could flick a switch, and just return to the PKU diet. It is a real challenge and for anyone trying to return to a PKU life. I urge you to not jump in feet first, and understand that you’re going to feel like you can take on the world, and it is true; but at the start only on the good days. Be aware that you can easily bite off more than you can chew at the very beginning. Keep life as simple as you possibly can. Work on building that consistency. Work on choosing the diet for a better you against the temptation of throwing it all away for a bad meal.

Person Jumping off a cliff into the sea feet first

It’s been 15 years since I first tried to return to diet, and finally, I am starting to look at my future. I have achieved more in the last 12 months than I had in the last 12 years! I’m thinking of returning to studying in the future, but I know I am not ready yet. Instead of rushing into it, I am taking time to understand where I need to be to achieve my future goals. The PKU diet will allow me to reach my full potential, but now, I understand I must accept the PKU diet completely, to fulfill it.

Some years ago, I felt very offended when a PKU consultant said “You don’t need Kuvan. The diet works!” in reply to me asking him about Kuvan trials, during a routine appointment. I now understand what he probably meant; the diet does work (but only if you let it). However, it’s not that simple. For many of us, it’s taken years, even decades to get to grips and understand our battles, not just with the restrictive diet itself; but our lifestyles, being released from the diet at various ages, eating disorders, and mental health. The comment that the consultant made to me had a huge impact on my relationship with PKU, and it set me back several years. It seems to me that some PKU consultants and support teams are missing the bigger picture completely of what life is really like as a PKU adult.

I truly hope this helps some of you who are struggling to return to diet, see it from a fresh perspective. No one tells us how to return to the PKU diet, and it’s so much more than just giving up certain foods and taking a supplement.

Thank you for continuing to follow my blog. I am humbled to see my story reaching 47 different countries during these last eight months.

Please stay safe and I look forward to reading your comments.

Thanks

Dan

Living with PKU

Food is everywhere. It’s a part of everyone’s social life no matter where in the world you call home. We socialise over food daily, from family mealtimes to meeting friends at the coffee shop. We gather at picnics and barbeques in the summer, we celebrate birthdays, weddings and christenings; with three-course meals and multi-tiered cakes. It’s nothing new. Looking back through history, Kings and Queens and other historical figures are repeatedly depicted feasting socially. Probably one of the most famous images for me is the mural painting ‘Last Supper’ by Leonardo da Vinci.

Food plays a huge part in every major holiday worldwide. I’ve spoken about my struggles at Christmas in a previous blog (SNEAK EATING IN CHILDHOOD), but it wasn’t the only one I struggled with. If I had a good haul of chocolate eggs at Easter, I would be eating my way through them for weeks. Long after everyone else had forgotten about Easter.

As a PKUer, you must eat a low protein diet every day, without fail. People hear the word ‘diet’ and think ‘I’ve done Slimming World, that’s not so bad’, but, it’s no comparison at all. There is another presumption that has increased in recent years for PKUers, and that is we must be vegan. Again, this is not even close. Imagine being a forced vegan (remembering that for most, becoming a vegan is a choice!). Start by removing all the nuts, beans, lentils and pulses from the vegan diet. After taking those important ingredients away, a large percentage of the vegetables we eat still contain some protein, so we are restricted on portion sizes for those too. We also must rely heavily on pharmaceutical companies for food; including our staples – such as bread, pasta and flour. I can have a bigger food delivery arrive from Dial-a-Chemist than I receive from Tesco!

In recent years the vegan movement has helped the PKU community in many ways; bringing some new products into the mainstream, like vegan cheese and oat milk; which has been life-changing for us. Also, and more importantly, veganism has brought PKUers a step closer to freedom. It has brought an acceptance of eating differently to ‘mainstream’ society. Many people have probably overlooked this fact and many younger PKUers will never know any different. This acceptance has had a huge impact on our ability to blend in with the crowd. I feel much more comfortable eating in public now than I ever have done.

For those of us who struggle to consistently restrict our diet, one wrong turn and things can be on a very fast spiral downwards. The short-term effects for me include irritability, a reduced ability to focus and concentrate, and problems with staying awake (especially after meals). This can have a massive impact on my ability to socialise. As a PKUer, we are often oblivious to these declines in our neuro-cognitive health. This makes managing it by ourselves even more challenging. It’s like asking the second rider on a tandem to steer when they haven’t got a clear perspective of the road ahead.

When the diet is not managed correctly, PKU becomes a vicious cycle of decline. As the Phe (protein) levels increase, so do the symptoms. This excess build-up of Protein is toxic to our brain, and many PKUers describe suffering with ‘PKU fog’. I can only describe the fog like this; imagine trying to do a hard math equation, with a 5-minute timer running, whilst stood in the middle of the biggest and loudest rock concert (you just can’t hear yourself think). This can be PKU reality in a silent room. No room is ever noiseless, just stop and listen where you are now!

PKU’ers often describe the difficulty of holding down a job. I can’t count the number of jobs I have walked away from over the last twenty-five years. This was due to an intolerable level of stress and anxiety that would build up over time and it would plague me. Eventually, and adding in the PKU fog, I would reach breaking point. The smallest thing sets me off and I would be off out the door, without warning. I have walked away from many jobs that I’ve loved over the years, and some great colleagues/friends too. Some of those jobs I have been exceptionally good at doing, and I’ve always known I had the potential to make them into a decent career. But I couldn’t help repeating the same patterns of behaviour over and over. Consequently, I self-sabotaged many good opportunities over the years because I was binging on food. This led to me losing all faith in myself and my abilities when hitting rock bottom.

I have spent much time trying to understand these downward cycles, and I have concluded; when life is good, having high Phe Levels has very little effect on me. The problems begin when everyday life gets challenging, and I start being pushed to the limit of my comfort zone. I feel this is when PKU has its biggest effect on me. My ability to think on my feet and react rationally is completely impaired. My emergency response is to throw up my guard, followed by an immediate instinct of removing myself from the situation and hiding away.

Man sat on his own head down at an empty dining table

One of the reasons I struggle with social and emotional relationships is so many social events are based around eating and drinking. For anyone struggling to manage the strict PKU diet, socialising is an absolute minefield. Often planned social events can evolve. A simple trip to the cinema can end up with an unexpected pitstop at Pizza Hut.

Because I find myself going underground when I struggle, I drop out of communication with people; many friendships over the years have been lost through lack of contact, not wanting to go out, or even not wanting to be around people. I was previously cut off after not staying in contact with my PKU support team, when I found myself pulling away from them during a difficult time. That was probably when I needed them the most. Surely they know these signs?

I know, like many other PKUers, I live substantially lower than my potential in life. This is because I fight daily to stay on my PKU diet. It has been impossible for me to consistently perform at my full potential. What I can achieve in six to twelve months, I can undo in a fortnight if I fall off the strict PKU diet. How am I supposed to plan my future like this?

Despite knowing what I am capable of on my good days, I still struggle to manage my PKU consistently (without the help of KUVAN) then I am left with no choice but to set my bar much lower in life. I am like a racing car running at half throttle. I should be fighting for a podium finish but instead, I can’t even consistently finish the race.

It’s a tough pill to swallow knowing that you are being held back in life. It can be demoralising at times, to know that there are drugs available that may just help you, to be consistently the best version of yourself. It’s not just for my benefit, but for my family; my wife, my children and my parents and sibling who have watched and fought alongside me my entire life. They too deserve to see me fulfill my potential. I’m sure this is the same for far too many other PKUers and their families, especially here in the UK.

Thank you for reading and for following my journey. Last month my PKU story ‘HAS PKU GIVEN ME AN EATING DISORDER?’, our PKU story reached 746 people. Please let’s keep spreading the word and sharing with friends and family.

Keep commenting and reaching out, your stories are inspiring me too!

Wishing you all the best until next time.

Stay safe.

Dan

Has PKU Given Me an Eating Disorder?

My parents had always been preparing me to take control of my diet for as long as I could remember. As I was growing up, I should have been starting to prepare myself for that all-important time, when I turned 16. The time when it would finally be all on me to take control and manage my PKU diet – on my own. Instead, I was fully focused on the fact I would be coming off the diet.

Growing up through these years with that mindset led me to a path of discovery. I can remember when I started eating a whole bag of chips from the ‘chippy’ instead of weighing out the usual handful I would normally get. This is how I gradually took control and started really drifting away from my PKU diet, particularly during my last year of secondary school. I ate the things I had always eaten, many of which were those good foods that I had been using to disguise the bad foods on my plate. Those foods that, in many cases, I hadn’t been able to fully enjoy all my life. The foods I had always loved but had been forever dissatisfied with the small portions I’d endured over the years.

For me, it started by not weighing anything. Where I could, I increased the portion sizes of everything I had been restricted on. I would go around all my local chip shops (it didn’t matter how good or bad the chips were) and I would measure up each portion size. By the time I was about 16, I was eating enough chips, I now realise, to feed a family of three! After settling on my favourite chippy, I would happily and regularly cycle a 40-min round trip. Many times, I even walked it, if my bike was out of action.

The chips kept me satisfied for some time but eventually, I tried my first battered sausage. Of course, this addition wouldn’t stop me from still having the biggest portion of chips available! This continued until I had tried everything off the menu that appealed to me. I was feeling great. I didn’t feel any different and so I ventured ever further away from the PKU diet.

On my 17th birthday, I landed my first job, delivering pizza. Enjoying every aspect of the job, I eventually worked my way into management. The hours were long and at one point I was consistently clocking up 80-90hr a week! I was earning good money, having huge amounts of fun, and I was more than happy to be eating pizza for breakfast, lunch and dinner!

It was also around this time that a new housemate led me to discover bacon sandwiches and the BLT. The salad had never tasted so good! I was loving food to the extreme and I started eating as if someone was going to come and take it off me at any minute! Eating had never been so much fun. As these early years away from the PKU diet progressed I became overwhelmed by all the exciting choices. It was like there was something new to try around every corner.

I still hadn’t discovered the world of Chinese food yet. Sure, I had had a couple of vegetable dishes over the years, but I had barely scratched the surface. Nor that of an Indian menu. I had still never tried chicken, lamb kebabs, or even a proper burger. Still, other new worlds of food opened before my eyes.

Engulfed by choices, I began to forge a new relationship with food. Searching and eagerly trying these foods for the first time. I was fast developing a taste and an overwhelming desire for all these often unhealthy but extremely tasty foods. Every day I felt like I was the winner of the Golden Ticket in Charlie and the Chocolate Factory!

One normal working day, with my good friend and work colleague in 2003, I ended up at an impromptu pub lunch and business meeting. This introduced me to what would be my ultimate nemesis, a world of food I hadn’t explored yet that would change my eating habits forever – pub grub! Lasagne, bangers & mash, scampi & chips, steak & ale pies, and real burgers like I’d never seen before! Before I knew it, I was eating lunch in my local pub four or five times a week, for months and months.

Once I tried eating bangers & mash I wanted more. After eating those fancy burgers, lasagne, pies, and scampi; I wanted more and more and more! And so, with my newfound freedom, I ate more.

All of this came at a huge cost. I never had any spare money as it always got spent on food. The same as when I was a teenager, most of my pocket money was spent on cheeky bags of crisps and sweets. Now I was easily spending a hundred pounds a week, just eating out.

Eventually, my eating out habit started to influence what I was cooking at home and my portion sizes became excessive. I was literally eating and then sleeping almost immediately afterward (this is one of my many side effects of not following the PKU diet). The only thing that would get me through the days at work was planning a pig out (as I called it). Sometimes I would even pull a sicky so I could eat to excess, knowing I’d crash out for hours afterward.

I must have lived like this for about seven years, eating every meal like it was going to be my last. After a series of major events in my life, including ill health, debts, having to sell my home, and allowing myself to get into a series of very poor and unhealthy relationships. I found myself in a deep depression and I really struggled through the days. Bit by bit, I cut myself off from the world outside my front door. Back-to-back I would be watching seasons of 24, and films. I built up an extensive DVD collection over time whilst I continually munched on endless crisps and biscuits.

I was overweight, unhappy and unfulfilled in most of my life goals. It was then that I remembered the discovery I had made some years earlier, PKU was a ‘diet for life‘ I had buried my head in the sand with regards to returning to the PKU diet. Sure, the idea had been in my head for a few months after the initial discovery, but I hadn’t been about to give up my freedom. How was I supposed to make such a huge step backward?!

It had been about 12 years since I had come off the PKU diet and finally, in desperation during 2008, I reached out to my local pediatric doctor and dietitian. I spent a short six months back on the diet, lost four and a half stone, and admittedly felt like a new person. Sadly, despite those improvements, it was totally unsustainable. A serious lack of their support at the time, coupled with hating my new supplements, meant I was doomed from the start.

I quickly became miserable. Having broken away from feeling down and depressed, and very soon after restarting the PKU diet, I had returned to the feeling of low moods and depression. It wasn’t long before I caved in to my need for ‘real’ food (which was everywhere). I cracked under pressure, abandoning the PKU diet. I succumbed to the temptation and, once again, headed back to the road of overindulgence.

I buried my head in the sand once again and got used to living my life with very high phenylalanine (Phe) levels. Living on cooked breakfasts, burgers and the like, the deeper I got into this downward spiral and the worse my eating habits became. I was spinning totally out of control. Latching onto certain unhealthy foods, and eating patterns, I would just happily eat them day after day.

Another decade on, in more recent years it has really felt like higher Phe levels were having a bigger effect on me than ever before. I felt more stressed, more irritable, tired, and the brain fog had become unbearable. Some days I just couldn’t function at all, with minimal amounts of focus and concentration. My weight was totally out of control, I’d gained nearly 10 st in as many years, and I was now suffering from severe obstructive sleep apnea.

I do worry now about how much damage I have done to myself. During these many years, I have abused myself with food. My concerns are not just from a general health point of view, but the damage done by PKU. Very little is known about the future of PKUers. Indeed, very little is known about the effects of PKU on older adults. This is something we need to change, together. I don’t want to see the young PKU generations fall into the same ‘bear pit’ as I have. KUVAN must be here for the long term for everyone in the UK and so do any other new drugs and treatments of the future.

I grew up on the diet and I know managing it as an adult is extremely tough. It is near impossible when you are fighting the symptoms of high levels. Add to that an overeating disorder, or indeed any eating disorder, and it is impossible to adhere to a strict PKU diet. How do I know? From experience.

Setting up our future PKU generations to grow up on a super relaxed PKU diet (e.g. using KUVAN) and then expecting them as young adults to suddenly go on to a hardcore low protein diet, with zero experience, is going to have devastating results for many individuals and their families. We must keep fighting this together.

Thank you once again for reading and following my blog. As always, I appreciate your comments. Please keep sharing with family and friends and let’s spread the word. PKU is for life, not just childhood.

Stay safe.

Dan

#PKUisForLife

Goodbye PKU

Man stood on mountain peak celebrating, on top of the world

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Eating junk food nutrition and dietary health problem concept as a person with a big wide open mouth feasting on an excessive huge group of unhealthy fast food and snacks.

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

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

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

Photo credits: Shutterstock

Sneak Eating into Adulthood

During my teenage years, my sneak eating grew to new heights. Despite the allowance of my Protein intake being the highest it had ever been, the PKU diet was still extremely tough. I just needed to eat all the time!

When I started secondary school, I got my own key, and I would be the first to get home most days. I would walk around the corner of my road expecting an empty driveway, and, on confirmation, I would excitedly pick up the pace. The all too familiar ‘Ready Brek’ man burning sensation inside me as I approached the door, key in hand.

I had about twenty minutes before I needed to leave and collect my younger brother from school. Once we had both returned home, Mum wouldn’t be very far behind! Hastily letting myself in, I didn’t mess around! I knew I only had a short window of time. Kicking off my shoes, I would bound upstairs, dumping my bag and uniform in a heap on my bedroom floor, change my clothes, and hurry back downstairs in a flash.

A sneaky packet of crisps, a biscuit; anything ready to eat which I could waft down quickly and easily, with no mess. I was always sure never to eat the last of anything. If the biscuit tin was full up, game on! If it was almost empty, then I would hunt for something else. Anything that would be less obvious it had been raided! Then, making a swift exit out of the front door, I would rush off to collect my brother.

During this period of my life, things were constantly changing. It wasn’t long before my brother was walking home from school on his own. I would just have to be home for when he arrived, to let him in. This meant my twenty-minute window home alone had now (thanks to my brothers very slow walking home, Cheers Bro!), become more like forty-five minutes.

This meant the end to my panicked rush home. Although I never hung around after school, my time home alone was too precious. I generally didn’t do any clubs, and I was very careful not to get any detentions. I would never do anything after school until I had gone home and ‘changed’ out of my uniform. Nothing would make me change my routine of going home to ‘stuff my face’; except for one person from school. That very special person, is now my beautiful wife!

Now that my brother had started walking home, I would let myself in and carefully check that the house was actually empty, before getting changed and hunting for grub. I had even started checking the garden and garage everyday now! This paranoid behaviour all started when I came home from school one day and, as I’d expect, there was no car in the drive. But to my surprise, when I let myself in, I found Dad unexpectedly at home! This was because the car had gone in for an MOT and Dad had finished work early. This really shook me at the time! I remember the disappointment and my heart sunk when I suddenly realised I wouldn’t be able to find any extra snacks that afternoon. It was also a real wake-up call! A huge realisation that getting caught mid munch was a very real danger.

It was at this time I developed the habit of sneak eating while standing in the lounge. I stood, transfixed on the lounge window looking up our road, watching out for an early returner! I started gobbling things down; they were barely touching the sides. Looking back, there was no enjoyment in this. I was on full alert at all times, my heart pumping hard! I was sure that I’d get caught sooner or later, and the thought of that scared the life out of me.

I was around 12-13 years old when I discovered it was a much safer option to go to the shops to buy and eat my food out instead. Best of all, I could go out with my mates and do it without sacrificing time with them to eat. So gradually, this became the new thing.

Whilst all my friends started going to the shops and into town at the weekend, spending all their pocket money and paper round wages buying the latest clothes, trainers and music; I was spending every penny I had on food!

I never had the latest clothes. All my Iron Maiden and Metallica T-shirts were old ones, that were ‘reduced to clear’. I just couldn’t afford to have the latest stuff and fund my eating habit.

When I went into town, whether on my own or with friends, I would always get off the bus, walk through the crowded market, into the shopping mall, and straight to the bakers. First purchase was a sausage roll from the ‘Swiss Chalet’. Sausage rolls were my thing. But, like I have mentioned previously, it was not about the sausage, but the pastry. I always had to have my pastry ‘fill’ and sausage rolls just happened to be the cheapest option. If any other pastry had been cheaper, then I would have bought that instead. On the rare occasion that a vegetable slice was available, I would have always opted for that instead.

My visit to town always ended with a visit to ‘McDonalds’, or preferably for me at the time, ‘Burger King’, as I would get to have onion rings as well as fries.

Prior to us heading home via the bus stop, we would always end up in a music shop. My friends would be buying T-shirts and/or albums; but, after eating my way around town, I never had much money left and would only have enough to buy a couple of singles, or maybe, on the odd occasion, enough to get a marked down T-shirt.

During this time, I was still sneak eating at home when a safe opportunity presented itself; while eating away from home progressively became my new normal. As I turned 15 and 16 years old, I spent more and more time out and about, with sleepovers becoming more frequent. I began getting a new fulfilment from eating with others; others who didn’t really know a great deal about my PKU diet. I never spoke about my PKU and, as I moved into new circles of friends, it was a huge relief to just blend in with everybody. Consequently, my PKU gradually became my secret and slowly, I moved away from it, in the knowledge that, being over sixteen I had outgrown the need for my restrictive PKU diet.

Writing this article has been tough. I have had to look really hard at myself. I have not only started dealing with the guilt I carry from this period of my life, but I do now question whether I have also been fighting ‘Binge Eating Disorder’.

I want to finish this by giving a special thanks to my fantastic parents. I have been truly blessed to have them. My Mum has worked tirelessly, cooking for me over the years and organising menus for school and camping trips etc; and I took this all very much for granted, as I guess all children do at that age. But I now know and appreciate the hard-work, dedication, support and love that was poured into my life from the moment I was born and every day since. Thank you both for everything.

Images from GettyImages and NSPKU

Sneak Eating in Childhood

The very first time I made the snap decision to start sneak eating, I must have been 4 or 5 years old. Back then, the house we lived in had the bathroom downstairs, at the very back. The only way to get to it was through the kitchen.

I remember that day clearly. Mum had left the kitchen and had gone to another part of the house. I spontaneously opened a cupboard door, grabbed a slice of bread from an opened loaf, and then dived into the bathroom to hide, while I devoured it.

I remember how I felt during that moment; that feeling of sheer panic when I almost got caught. That moment when Mum returned to the kitchen, while I was still eating that slice of bread, has stayed with me forever. Having stuffed it all into my mouth at the point I heard her returning, I was fully committed. To make it worse, Mum was now asking what I was doing in the bathroom! Unable to speak, I continued chewing ferociously in silence. I felt like the ‘Ready Brek’ man as I burnt inside with adrenaline! Mum had realised I was up to something, and subsequently, I remember getting told off, after sheepishly appearing from the bathroom.

Unbeknown to me at the time, this would become a regular habit in my life. I hated doing it even at that early age (and it never got any easier). I always felt extremely guilty. It felt very wrong, like I was stealing; but I was hungry!

I can’t remember the second or third time I took the opportunity to sneak eat, but I do know that the habit continued to grow. It started with the items I could easily get, and just the foods I knew I could eat. I was too scared to try anything forbidden by my PKU diet. I knew it was dangerous, and so it started with a biscuit from the biscuit tin or a bag of crisps; anything to ’fill a hole’.

As I got older, the habit of sneaking food grew with me. Over time, one sneaky biscuit became two, then three. At family gatherings, I would find myself hovering around the buffet table. I would wait for ages until everyone had left the room or area around the table. Then I could add a few extra crisps to my plate. Sometimes, I would quickly eat something and then replace it on my plate, before sitting with everyone in the next room. As I became older (about 10 years old), it then progressed to shoving a sneaky cocktail sausage in my mouth when no one was looking, or a party sausage roll; and so it continued. Anything I could find that would fit in one mouthful would be my target; and so my interest gradually turned to try new things.

This pattern of behaviour became a way of life for me. I can only describe it as some kind of survival instinct. This behaviour has never sat right with me. It felt wrong on every level, yet I felt I had no other choice! I was always hungry and increasingly dissatisfied with my PKU diet. It sounds ridiculous, but the satisfaction I had from a cocktail sausage, my goodness! The flavour, and the texture was like nothing I’d ever experienced. My mouth used to water at the mere thought of a chance at getting to eat something like that.

When I was sat in the car, and we would be driving to an Auntie’s house for tea; whether it was a party or a general gathering, I was already thinking about the buffet table. Depending on the occasion, or which relative’s house we were going to, I would already know what was likely to be on the buffet table. I would already be hoping to see party sausage rolls; they were my favourite! Although I loved my PKU pastry (it was unique in both its flavour and texture), having discovered ‘normal’ pastry, I just couldn’t get enough of it.

I always looked forward to family events immensely; whether it was barbecues, birthdays, or Christmas. It wasn’t just because I loved spending time with all of my family. I would also be very excited at the thought of a buffet table, and the treats it had to offer me. Every child loves the exciting build-up to Christmas. Putting up the Christmas tree, decorations, letters to Father Christmas and I was no exception. But for me, Christmas had another exciting event to offer. It was buffet season! We were talking back-to-back buffets, for a week or more! By January, I had certainly had my fill of vol-au-vonts, as well as sausage rolls. I even ate mushroom vol-au-vonts on one occasion, just to get my pastry fill (and I hated mushrooms)!

For me, one of the things I have always identified as a PKUer is the majority of our low protein food is either soft or crunchy (or both). Neither of these take much chewing; a few chomps and it’s gone.

As a child, I would always be the first to finish eating at the dinner table. I remember always being told to slow down, that I should chew my food properly. “You need to chew your food at least twenty-five times before you swallow it”, my Dad would advise me from time to time. I always took this challenge very seriously, but I could never understand why, before I had reached the tenth chomp, I was chewing on fresh air?! Despite this, and trying my best to continue taking it seriously, I would sit there and carefully count, chewing an extra fifteen times, even though my mouth was empty. Hence, I quickly reverted to my original eight chomps a mouthful. It felt like I was trying to beat ‘The Guinness Book Of Records’ for the greatest number of chews ever, whilst eating a single mouthful of roast dinner (with no meat)!

Consequently, as I grew older, so did my frustration at the lack of variety and satisfaction the PKU low protein diet offered me. As I grew into my teens, my appetite grew massively. I had many successful (or so I presumed) years behind me of sneak eating, that had meant my confidence was at an all-time high. Despite all the extra protein, at the time, I always felt fine. I was never ill. I never felt the slightest change in myself (although looking back now, I have a very different opinion), so I continued pushing the boundaries of my PKU diet.

Gradually, this continued to build confidence in me, allowing me to normalise the habit of sneak eating in my head. I convinced myself, over time, that I was in control, and the habit became bigger and bigger. Instead of just taking the rare occasions to sneak eat, I started looking for more frequent and safer options. It was at this point I started creating my opportunities. As I got older, this became easier, and I became braver, taking more and more risks. It had become a completely normal part of my life.

My next blog continues my story of sneak eating through to adulthood, which will be available here, in 4 weeks.

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