Over the last few weeks, I have found a comfy ‘middle ground’ with my PKU diet, enabling me to function much better than I have been in recent months. I’m not fully back on diet yet, but I am getting closer every week.
Reflecting over the last couple of weeks, I have achieved quite a lot, which shows me I am regaining control of my PKU levels. I can usually measure my own Phe (Phenylalanine) levels by how productive I have been, although, because this works in hindsight, it’s not much help at keeping me one step ahead and staying in control. Higher Phe levels mean I will flag earlier in the day. Often if my levels are very high, I start struggling early afternoon and if I don’t react and cut down my Phe intake, I will soon reach a point where I won’t be able to get going at the start of the day. It is at this stage I starve myself in order to reset. This is often because I am so lethargic that it is too much effort to prepare something to eat. Previously, I used to just eat our special low protein pasta, or toast with jam, to get my levels to drop quickly. But in recent months, this has now started playing havoc with my stomach, and I just can’t do it anymore. This makes bouncing back from high Phe levels much harder.
My biggest achievement this month has been finally completing my children’s writing course, which I am so thrilled to have passed. This month has also seen me complete the planning and preparation for a project I developed throughout the course. I am super excited about getting stuck into my first ever children’s novel, which I plan to start writing next month.
The end of this month saw me and the family heading off for our annual 5-day break to Butlins. Holidays and the PKU diet are always a challenge, and for a PKUer who is struggling to stick to the diet, it can be the perfect storm.
Taking my supplements close to mealtimes, I aimed to fill myself up. Not wanting to be super hungry when I sat down to eat, hoping I could take the edge off my hunger to give me a better chance of eating less. It started off well, but as the week progressed, my inner compulsive eater kind of took over. I may have eaten a few things I shouldn’t have and too much of a few foods I should be eating with more caution. But I stuck with my supplement routine, and I know this stopped me from eating much more than I did. I know I am a compulsive over-eater, so I am going to take sticking to my supplements as a little win, at least. We all had a fantastic break away together, with some much-needed quality time, rest and relaxation. Once I was back home though, it was once again time to turn my focus back to PKU and getting the diet right.
I’ve been excitedly counting down the days until this month. Last September, over a pint in ‘BrewDogs’, I decided to go to Download Festival this year with my non-PKU brother Gareth. The plan was to camp for three nights and embrace the whole festival experience. This was to be my first ever camping trip since returning to the PKU diet.
I had initially planned to take a little gas stove for cooking, so I could cook protein free toast to have with jam as breakfast and again later for an easy snack. Also, boxes of protein free pasta mixed with either pesto or ‘Dolmio’ stir-ins and then I would add mushrooms, peppers and sweetcorn, etc.
It was a few months after I made my initial plans; I discovered my bro was going to be rocking up in his campervan. We not only had the facility to cook, but also a small fridge! This was a game-changer for managing my PKU diet. I’ve got to say I’m loving campervan life now. Maybe I’ll even get myself one someday! We arrived early evening on the Friday and after setting up the van and awning, we made a start on dinner. To start the weekend off, we had Aldi’s ‘Salt and Vinegar No Fish Fillets’ with some left-over chip shop chips. It was a tasty way to start off the weekend before heading over to the main stage to watch Kiss perform their last ever UK performance. A fantastic first night and first ever experience of Download.
Fortunately for me, although my bro doesn’t have PKU, he has, in recent years, become vegan. He is always coming out with new and exciting ideas that are easily tweaked to suit my PKU diet. We lived off gnocchi, asparagus and broccoli with pink beetroot pesto for the rest of the weekend and cereal for snacking on. I must admit I didn’t feel hungry once.
The weather was incredible all weekend, and the atmosphere was just amazing. I ate well and yet still stayed on diet and took all my PKU Sphere. Although I will say, the supplements don’t go down great with a next morning hangover – I may have had a little too much rum on Saturday night! But you must expect this when you get to see both Megadeth (for the first time) and Iron Maiden back-to-back!
An amazing weekend was had by all and when we packed up and drove out of Donington Park on Monday morning despite feeling exhausted and sore, the only thing on our minds as we drove off-site was, we have totally got to do this again next year!
You define binge eating when a person regularly eats large amounts of food during a short period. Often eating until they feel uncomfortably full (like after Christmas dinner!). These binges are often planned, done alone and may even include ‘special’ binge foods— usually the binge can be followed with feelings of guilt and shame.
What are the signs that you may be struggling with binge eating disorder?
Do you eat when you’re not hungry?
Do you binge eat without an obvious reason, eating until you are uncomfortable?
Do you eat sensibly in front of others and then make up for it when you are alone?
When you are emotional, albeit positive or negative, do you reach for food?
Do you have feelings of shame, guilt and embarrassment about your weight or the way you eat?
Is your eating affecting your health or way of life?
Do you fantasise over how much better your life would be if you were a different weight or size?
Have you ever eaten food that is burnt, frozen or from the rubbish?
Are there certain foods you just can’t stop eating until they have gone?
Do you spend too much time arguing with yourself about what or if you should eat?
Do your eating habits make yourself or others unhappy?
Do you fast or massively restrict your food or calorie intake?
Do you always need to be eating food, drinking, chewing or sucking on sweets?
Do you struggle to regulate your weight, weight loss followed by uncontrolled weight gain?
Do you hide food or stockpile certain food types?
Scarily, I answered yes to 14 out of these 15 questions. If you answered yes to several, it is possible that you have a compulsive eating disorder.
My advice to you would be to talk to your PKU support team, and they will give you some guidance. There is currently no research or data for PKU and binge eating disorder, but it is very clear to me that there needs to be some. The more PKUers that come forward to share their struggles, the greater the chance we have of highlighting this issue.
In my case, binge eating manifests itself in the foods that were forbidden or restricted for me in childhood. As I have said previously (sneak eating in childhood), I started sneaking food when I was 4-5 years old, to feed the hunger. Then, as I grew up through my teens, I somehow crossed the line of eating because I was hungry, to eating because I was compelled to. When I finally came off the PKU diet, I went mad for everything, oblivious to where the path was leading me!
When I recently joined O.A (Overeaters Anonymous) and attended my first few meetings, I listened to the other members talking about their battles with food, and I felt so alone. How on earth was anyone in this room going to understand my situation? We are all fighting this mental health issue (eating addiction), but for myself, I knew the binge eating was fuelling the symptoms of my PKU. This fed the decline in my mental well-being. Sucking up all my energy and leaving me unable to put any effort into anything.
It’s hard to describe the pain that accompanies severe mental fatigue – when it physically hurts to get up and do something and takes so much energy to mentally prepare for going out and meeting people. Planning social events in advance is something I dread doing. I avoid it at all costs. I am very spontaneous with my plans because I must be. There are days when I just can’t cope with being in social situations – It can take all I can muster just to walk into a pub, café or restaurant; where I am meeting up with friends or family, and the mental effort of doing it hurts so much, it’s torture. It fills me with so much anxiety, anger and frustration; leaving me feeling exhausted.
Being stuck in your own head is the worst feeling in the world. It’s like being trapped inside a body that refuses to move, despite giving it everything you’ve got! It’s like cycling uphill with friends who are all much fitter than you. You’re the slowest and get left behind. Eventually you give up peddling, exhausted, and get off to walk and push your bike instead. Looking ahead, you see your friends disappearing into the distance, nobody even noticing you’re missing! That is me, sat in the pub or restaurant on my own, with a group of friends, being silently overlooked, unable to interact; bored and clock watching, wishing the ground would just swallow me up.
I used to be a gardener, and I remember on one occasion being on a job where I was installing about 30 metres of fencing. At the end, I stood back to admire my work and to my horror – I had set the first post in the ground upside down, so it didn’t match the rest! It’s so demoralising when you work your butt off all day, then on stepping back to admire your efforts, you realise you have made a stupid, but major, error!
This has been my working life over the years. Someone always comes along and points out that half of what I’ve done is either back to front, upside-down or is littered with silly mistakes – and I had been completely oblivious to it, until that point. I would look back and not understand how I could make such simple mistakes, let alone overlook the errors – having to have them pointed out to me. This was a slap in the face every time. This had been my livelihood for over 20 years. I shouldn’t have been making these rookie mistakes, ever, but I was making them all the time.
Over time, I developed a feeling of hatred towards myself and low self-esteem and self-worth followed; the continual embarrassment of being made to feel stupid, eradicating all my confidence over time, and always leading me back to binging on food to console myself. At its peak, it was an ever-decreasing spiral of chaos, with one disorder feeding the other. I didn’t understand how anyone at O.A was going to relate to my story?
What I didn’t expect to hear from members sharing at O.A, was, although they didn’t have PKU, they still experienced the same cycle of mental health issues I do, feeding their eating addiction. While PKU may supercharge my cycle, the fact remains that people who suffer from an eating disorder, in some strange way, have a closer understanding of my life living with PKU.
During the last year, I have realised eating disorders are far more prevalent within the PKU community than I’d realised. What concerns me looking ahead is, with the introduction of Sapropterin (Kuvan), will it be a helpful preventative for future PKUers against ‘binge eating disorder’, or could it become the same fuel that being released from the PKU diet was for the older generation PKUers, like myself? Overwhelmed by the door opening on a world of new and exciting foods.
Please take a moment to answer my very short survey (link below). It would be interesting to get some statistics on this subject to share with NSPKU and indeed other PKU associations around the world. PKU may be rare, but our community worldwide runs into the millions. Collectively, we can have a global voice which could potentially have a greater impact for all of us. If I can get 2,000 people to answer this poll from around the world, that would be the equivalent of double the adult PKU population, here in England.
Please share this with your PKU groups and encourage your fellow PKUers to take part. In the meantime, please all stay safe.
Over-eating has ruined my finances over the years. While I have control over the very worst of it, I sometimes feel like I’m so close to the edge of a major binge-out. I’ve been back on the PKU diet solidly now for 10 months, and whilst I have had several mini binge-eating moments, I have been working hard to make them as low in protein as possible. This is in a bid to limit the impact on my Phe (Phenylalanine) levels.
This year has seen me take a huge step forward on my journey returning to PKU life. Keeping my head clear from the PKU fog during this last year has been paramount in helping me focus. I have been capable of deep, honest, self-reflection; for the first time in my adult life.
Writing my blogs during this last year has enabled me to start unpacking a warehouse of boxed-up memories and experiences, that have built up over decades. Finally clearing through the memories that have clogged up my mind for so long has been a monumental milestone for me to reach. Imagine having a slow laptop, then deciding to do a factory reset, giving it a new lease of life. As I continue to write and share my blogs, it feels like I’m finally clearing my mind of all the unnecessary junk.
When you spend so much time being anxious and worrying about every detail of your life, you blunder your way through, day after day. Never stopping to sit back and take stock. Not ever taking the time to reflect on what has happened or learning to approach things from a different perspective. Getting back to the PKU diet has enabled me to do just that. Many things have come to light during my hours upon hours of reflection, during recent times.
I have discovered that my relationship with food has consumed every part of my life. My true focus for working and earning had been solely to feed myself during those years. I’ve always had a bigger picture of where I wanted to go in life. Where I wanted to be by now, but only now do I see the harsh truth in front of me. The truth is – filling my stomach and cupboards has been the only priority on my agenda of life goals.
My attitude to money has always been to earn more, rather than spend less. Countless times I have burnt myself out working second jobs, or working huge amounts of overtime. Some weeks or sustained periods I’d be clocking 80-90 hours a week. I was always aiming for a promotion or skipping from one job to the next, in the hope of earning better money or, having better opportunities for promotion.
I would spend hours working out complex budgets seeking how I could earn extra money, along with hours of planning for major career changes. One minute I’d be telling everyone I was going to become a schoolteacher, then a police officer, even an IT consultant. It seems ridiculous now. I wonder how people didn’t think I was barking mad at the time. Looking back now I think ‘what on earth was I doing?’. I know now, that being off the PKU diet and eating 8 times the amount of protein I should have been, meant there was no way in the world I could have had the focus, energy, or mental health needed to take on such challenges. I was expecting way too much of myself. Of course I was going to fail. How was I ever going to succeed? Oblivious to it all, I would go on to the next disastrous idea and for over 20 years, the cycle kept repeating itself.
I was brought up in a family where the value of money was both taught and appreciated. We were the family that took sandwiches and drinks out with us, and saved spending money on food, for special occasions. I was taught to always be responsible with money. Yet despite how I was brought up, I found myself accommodating the huge cost of involving food in everything I did.
Since fully returning to the PKU diet 10 months ago, I have reached the stage where I understand I’ve had time for reflection, but now it’s time to start fighting back against these lifelong habits. I know that maintaining my diet is the key to me achieving this next chapter of my PKU journey. I have learnt I don’t have a choice; I must nail it! Failure is not an option for me now, especially given how far I have come.
This next phase of my journey has commenced by admitting to myself, my family, and everyone around me, that I have an eating disorder. I am a compulsive over-eater! All those years I had been telling myself that I was working myself to the bone to invest in my future, when what I was actually doing was feeding an addiction.
If you had asked me 10 months ago if I had an eating disorder, I would have answered with a definitive ‘no’. Over recent months, I have acknowledged to myself that I have a binge-eating disorder. I truly believe it has been caused by the extremely restricted PKU diet I had to adhere to during childhood, albeit for the sake of my health. It’s shocking to think I have a binge-eating disorder, and despite suffering from it for over 20 years, I have only just recognised it.
Throughout adulthood, I believe, the cost to myself for making poor financial decisions easily exceeds £150,000, which is staggering. Our PKU support team, here in the UK, recognises that there appears to be a link between PKU and eating-disorders, but there is currently no research available, something I believe needs to be investigated moving forward.
Despite feeling completely stunned by this year’s revelations, I am feeling strangely empowered and highly motivated moving forward. Having reached out for professional help in the last couple of weeks, I am thankful to be closing 2021 at this point in my journey.
There will most definitely be more reflection done in 2022, but this new year is the start of a fresh chapter for me. Looking forward, I am excited as I begin my journey with new friends at OA (Overeaters Anonymous) as I start to learn new strategies to enable me to move forward with both my eating-disorder and PKU.
I hope the growth I make through the next year will help other PKUers like me who are also battling with an eating-disorder. I know there are many of us struggling all over the world.
This is the year that BH4 (Kuvan) will finally be available for all of us here in the UK! This is going to help many PKUers to move forward in their journeys.
Wishing you all a good and prosperous New Year! I look forward to sharing more of my journey with you and maybe even getting the chance to catch up and meet some of you throughout 2022!
As far back as I can remember, I have always spent far too much money on food. But this wasn’t always the case. My parents always taught me to save regularly as a child. I can remember the trips into town with Mum, so I could pay my savings into my building society account.
The habit of saving gradually faded as I grew more independent. A trip to the shop one morning, during the school holidays to buy stickers with friends led me to witness, for the first time, my friends buying penny sweets and bags of ‘Space Raiders’ (corn snacks). I quickly realised I could start feeding myself for less than 15p.
At 10 years old money was not easy to come by, and despite only spending a few pennies at a time, it soon added up. It wasn’t long before I recognised that if I was given enough money to buy three packets of football stickers, but only bought two, it left me with enough money to get sweets, and a snack as well.
As I moved into secondary school and my appetite grew, so did the need for more money. I had progressed to a drink and bag of crisps and the cost had risen to about 50p a trip. This was far less sustainable and, because I was no longer collecting football stickers, I was solely relying on pocket money and any odd change I’d find on the floor, during my travels.
One day, I started washing cars with a few friends and figured out there was money to be made. The problem was, with such a big group of us getting involved initially, it was only making us pennies once it had been split between six of us. As luck would have it, people soon got bored and, within a couple of weeks, it had dropped down to two of us. As the weeks drew on, it ended up just being me.
I was fortunate over time to acquire several regulars in my road with the average price being £2 a car. The cash I earned cleaning cars kept me in food until I was old enough to get a paper round. Paper rounds were a good source of regular income, but much harder work than cleaning cars for the money it paid! I kept a couple of my regular car washes going to give me some easy, extra cash.
When I progressed into full-time employment, I was still living at home. At that age, you don’t have to think about budgeting. You have more money than you know what to do with.
Moving out into the great wide world was a whole new thing altogether. Your priorities have to change overnight. It didn’t impact me much at the start, having to pay for rent, council tax, electric and gas, etc. I was working as a manager in the pizza business and had access to lots of free or very cheap food. I was off the PKU diet and eating pizza continually. I was winning at life as far as I was concerned!
When I decided to move on from the pizza business and pursue my career in gardening & landscaping (which I’d trained for in college) was when the money struggles started. I had not long bought a house of my own and things were going well until the mortgage rates started to increase, and I had to tighten my budget. I had never had to prioritise anything over my food budget before. Even as a kid, whatever sum of money I had, it was always reserved for food first.
I continued the same eating habits despite my food budget shrinking. To make matters worse, this coincided with the period when my eating had developed into a problem! I had quickly progressed into regular binge eating and my food bills were growing out of control, just at the time I needed to curb them.
I got swallowed up in the darkness during those next few years, eating myself into oblivion. I stopped paying my bills and just sat on what cash I had. I was consumed by the fear of going hungry. I was going to the supermarket and loading up a trolley with food a few times a week, just for myself. My evenings and weekends were spent sitting in front of the tv eating until I passed out. When I finally woke up, I would continue eating.
When I bought myself the house, I had a plan. A plan that would set me up for the future. I bought what had originally been my Grandparent’s house. The house had many fond memories and was just perfect for me at the time. The bones of the house were solid, but it needed an awful lot of work to modernise it. I was no stranger to hard work, and the house’s affordable price meant it was just what I needed to get myself on the housing ladder.
My plan had always been to live there while I renovated it over a few years. Then once it was completed, sell it, to enable me to afford a more suitable property and move back to the area where I grew up. I never achieved this goal despite hours of hard work which included fitting a new kitchen and re-wiring the entire house. I had already invested a lot of money on materials after moving in; all I needed to do was get on with it.
Room half renovated with abandoned ladders and materials
When I descended into the dark world of binge eating, all my renovation works just stopped. I was going to work, eating and sleeping all day, every day for months, and months, and months. I can’t even tell you how long this went on for because I don’t remember when it started. All I can tell you is it was somewhere between 1 and 3 years.
I hit the ground one day and realised I was in big trouble when a court summons came through the door for unpaid council tax. I was in arrears with everything. Burying my head in the ground, my initial response was to pull a sicky and spend the next few days at home stuffing my face. The real wake-up call came when I missed my first mortgage payment, several weeks later.
It was, at this point, I realised that I was going to have to wave goodbye to owning my own home and I put my house on the market. I did make some money on the sale of the house, although nowhere near its full potential, had I finished the project. Unlike my original plan, what money I did make on the sale, only paid off the vast debts I had built up and left me no option but to rent. The only upside was I got a fresh start, with a clean sheet and a small reserve of savings.
I was adamant I wasn’t going to let myself get back into that position again, and, it was at this point I returned to the PKU diet for the first time. The change was just incredible. Within a week or two I was completely re-focused and starting to plan my comeback!
I started by ditching the job I was in. I had quickly found myself a much better-paid job, working as a courier. It was highly active and pressurized, but the new PKU me was totally nailing it. Or at least I was nailing it until I hit the wall with the diet.
I crashed off the diet and quickly discovered I couldn’t cope with the stress, pressure, or workload of my new job! Before I knew it, I was ringing my old boss and asking him for my old job back. I quickly returned to my old place of work (with my tail between my legs), and in less than a month of returning, I had slipped back into the eating, sleeping and working routine, once again.
Thank you for reading. Please join me again on Tuesday the 28th of December for ‘How PKU has Affected my Finances Part 2’.
Thank you so much for all your supportive comments, and for sharing your own experiences with me. I look forward to reading more of your stories!
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 Kuvantrials, 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.
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!
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.
Willy Wonka’s golden ticket
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.
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.
Reaching the age of sixteen, and more importantly, the end of my PKU diet, had been a goal I had focused on for as long as I can remember. Despite growing up knowing there was an end game, I didn’t just reach sixteen and say “Goodbye PKU, hello freedom!” It just wasn’t that simple.
When I was young, I had no idea what freedom of eating even looked like. I just knew that it meant being the same as everyone else. The need to not be different was all that drove me in those early years. It was the lack of fulfillment in my diet, at about ten or eleven years old, that fuelled my interest in the forbidden foods. Whilst I was wary of trying new things, I was driven by a new awareness that everyone around me wasn’t just rushing through every mouthful, just to clear their plate. People around me were really enjoying what they were eating; comments like ‘this chicken is so tender’, or ‘it’s not chewy at all’ really opened my eyes to the lack of different textures on my plate.
Whilst some moments were very much planned, like my first ever ‘Big Mac’, many big moments of stepping away from the PKU diet were just impulsed decisions. A moment of bravery, driven by curiosity and a real need for a variety of flavours and textures. The world had so much more to offer me! I couldn’t wait to break free from my boring PKU diet of fruit, vegetables and other synthetically processed foods and flavours. I always had this image of a wild-haired professor like ‘Doc’ from ‘Back To The Future’, in a lab somewhere in the world, concocting all these disgusting formulas; and using PKUers like me as his unfortunate test subjects!
Coming off the PKU diet was a very strange time for me. I was leading a double life. By day, at college, I was leading a perfectly normal existence; nobody knew about my diet. I went through my days as just one of the lads, eating sandwiches out of the cafeteria at lunchtimes, just like everybody I hung out with.
By night and at the weekends, I was very much still a PKUer. I didn’t tell my parents that I was slowly coming off the diet because I didn’t plan it. It just naturally happened over time. If I’m completely honest, the journey off of my PKU diet began when I started gaining my independence. Knowing I would be coming off the diet in a few years. Bite by bite, I slowly started eating my way towards freedom. I didn’t notice any changes in myself through those years (every PKUer whose been off diet will tell you the same!), this gradually encouraged me to keep raising the bar and pushing the limits of my protein intake.
When I finally turned sixteen, in my head I was free, but in practice I found it hard to just walk away from my supplements. I didn’t have the first clue how to start a conversation about stepping away from the diet with anyone. I certainly don’t recall having a conversation in my teens with my PKU support team and dietitian. We never spoke about what would happen when I turn sixteen; how would things work? Do I get up on my sixteenth birthday and shout “Woo-hoo!” and head straight for KFC to celebrate? Could I go out in the garden and burn all my PKU booklets and t-shirts? No one helped me, or my incredible parents navigate this important time together. There was no support at all. We were just dropped.
Landing my first job on my 17th birthday; I started working for a well-known pizza company. This was an exciting phase of my life that, not only put real regular money into my pocket, but also introduced me to pizza! That job would also re-unite me with many faces from both secondary school and primary school; faces I hadn’t seen in years.
Within a week or two of working there, I learnt that, as an employee, I got fifty percent off! As I’m sure you can imagine, I soon plucked up the courage to try my very first pizza. I had only recently discovered melted cheese, in the form of cheese on toast and I was already hooked. My cousin Gavin had introduced me to it one Wednesday lunchtime. I had a half-day at college every Wednesday, and I would leave college at midday on my motorbike, and head straight to his house to turf him out of bed. We would then have cheese on toast and a mug of coffee whilst watching ‘Terminator 2’ or other epic nineties movies, before heading out to the garage to dissect our motorbikes for maintenance!
Again, Gavin had introduced me to cow’s milk. I had never had coffee without my Aminogram supplement. My supplement originated as a horrid gritty paste, which over time had been watered down into a gritty, sickly sweet, but yet an extremely bitter flavoured milk; the only thing that was strong enough to take the edge off that rancid flavour, at least enough for me to be able to take it without gagging, was coffee.
I’d never tried a real coffee before! I was surprised by its smoothness. It was sweet but not sickly sweet, and so creamy. I had no idea how to take ‘real coffee’ so I just took it the same way Gavin took his coffee, white with two sugars. I guess this kick-started my journey off PKU, as gradually, I dropped my supplement in favour of real coffee.
Remembering that first cheese on toast still makes me smile! It just blew my mind completely; the cheese I tried was Red Leicester (I loved that orange colour; it still attracts my attention in the cheese aisle now!) with Branston pickle on top. I remember my cousin dipping a large knife into the jar; this was to cover the knife with the pickle, whilst avoiding the crunchy lumps. I adopted this same tactic myself, until I discovered ‘sandwich’ pickle. I’d had enough of hard crunchy food! I just wanted to focus on the texture of that soft melted cheese!
It had been a busy Friday night delivering pizzas. Every time I returned to the shop, turning the corner on my moped, the smell of pizza in the air made my stomach spin with excitement. Needless to say, it didn’t take me long to give in to the attraction of that inviting aroma. I decided to get myself that ‘fifty percent off pizza’ in the form of a Garlic Pizza Bread, using some of my generous tips from that evening. Opening the box, I took in the view before me and then tucked right in. I remember thinking ‘Oh my goodness! What have I been missing all these years?!’
My next step was to progress to the all-famous Hawaiian pizza; my first ever real pizza! I was always conscious that it was high in protein before even adding having meat on it, hence my choice, with just a bit of ham and then pineapple, which was protein-free (in my head I was still taking everything step by step). Any odd mistakes or undelivered pizzas were often given to the crew members on long shifts or overtime, so opportunities soon came along for me to try every variety of pizza available on the menu, slice by slice!
Free pizza was like a dream come true, and my love for this Italian cuisine grew and grew. This led to me frequently purchasing pizzas, as I stepped away from the humble ham and pineapple and replaced it with my new favourite, Pepperoni pizza. During the summer of ’94, I ate enough pizza to sink a battleship. I was living the dream! I had money in my pocket, my own transport, an incredible social circle and my huge appetite for food was being satisfied beyond belief.
They were good times; one of the best summers of my life! However, unbeknown to me during this time (and this I have only discovered whilst writing this blog) the PKU guidelines had already been changed from ‘coming off the diet’ at the age of sixteen to ‘diet for life’. Although the guideline was changed in 1993, I didn’t find out about this until 2005. After getting my first computer connected to the internet at home. I accidentally stumbled across it. I was completely gobsmacked!
This blog has been quite a journey for me. Raising yet again, many more questions and emotions. If any of my blogs have raised any questions for you, please get in touch with me via the links to Facebook, or leave a message here. I can also be contacted by email at truthaboutlifewithpku@gmail.com
I hope to bring a Q&A podcast to accompany this blog soon, to answer some of the questions you’ve put forward.
Truth About Life with PKU 