Dan’s Journal November

I have heard nothing back from my gene test yet. I’ve been talking to others around the UK, and it seems the waiting time is extremely variable. Some people have waited a few weeks, while others have waited months; one person has reported waiting 6 months! So, my wait must continue.

Despite my best efforts to stay on the diet this month, it’s been a bumpy ride, to say the very least. I keep saying this (only because I know it’s the truth!), but the key to cracking the diet and getting the best out of myself relies on me achieving the PKU diet consistently, every day. Getting access to the Sapropterin trial really means the world to me. The chance of getting real help to achieve a stable diet is forever on my mind. I know that there’s only a small chance I will respond, but I must hold on to that hope. I have to cling on to it because currently, I can’t achieve the consistency I need to be ‘normal’ everyday. I’m feeling fed up with my Phe (Phenylalanine) levels bouncing around like a pinball machine and all because ‘life’ impedes managing my PKU diet properly.

This month my wife and I had to remove our daughter from school due to continued bullying. The school were failing to protect our daughter and had left us with no other alternative. The stress and upheaval this month has challenged my dedication to the PKU diet and tested me at every turn. November has seen many emotional conversations at home between the three of us. Many more conversations with strangers that have pushed me right out of my comfort zone. But I have held fast on the diet as best I could.

I haven’t binged on food this month, which is a huge result considering the tension and stress I have been under. I am proud to have weathered the storm that both October and November have brought me. Now I move into December feeling strangely optimistic. Although my journey is long, I know I have made significant progress in understanding myself and PKU of late. Every month I understand a little more about how PKU affects my daily life and the reasons I am not being consistent with my Phe levels. Another month further along my PKU journey and yet another lesson I have learnt about myself.

Inside, the feeling of wanting to do more for PKU continues to grow within me. I want to dedicate more of my time to help improve the lives of everyone living with PKU. The urge to do something positive helps me to feel more at peace with the journey I still have ahead of me.

One morning, I sat with a coffee and a notepad, quietly brainstorming ideas. How can I be more useful to the PKU community? How do I become a bigger part of the fight for change?

As I sat writing a list of everything that came into my head, I focused on all my knowledge. Recalling the many conversations I’d had with people all over the world directly affected by PKU. It made me realise there is so much work to do to ease the suffering of PKU, on many frontiers.

I realised my struggles with PKU paled into insignificance compared to some plights PKU families are finding themselves in, all around the world. In some countries, PKUers don’t have access to any formulas/supplements or low protein products at all. In other countries, people struggle to get the funding they need for vital PKU treatments.

It has been extremely humbling for me to hear the stories of other PKUers from across the globe. Despite my current struggles, I recognise that because I had treatment as a PKU child, I got through the most destructive and dangerous years of PKU life. Because of the access I had to treatments, no matter how early those treatments were, or experimental, I had a chance of a ‘normal’ life and consequently I am better off than so many of our PKU brothers and sisters.

I’m still figuring out my place in this giant jigsaw puzzle that is Phenylketonuria, but I know I want (and need) to have a bigger part to play in easing the suffering of PKU.

Dan’s Journal September

My aim for this month had been to rebuild my plans and push forward with the progress of the personal goals I had set myself. My diet is the key to achieving. I know I can achieve anything if I can get the diet right. PKU should undoubtedly be the most important thing in my life. It affects every aspect. This was the pep talk I gave myself at the beginning of the month, knowing I had just come through a tough month. I was starting September on a good footing. PKU was, and would continue to be, top of my priority list.

I spent the first weekend of the month in Swansea to help my son move house which was great. Now he is all grown up I don’t see him so often, which is hard. These days he is very busy working on his PhD, and although we talk every week, it’s not the same as spending proper time together, even if it is humping boxes about!

I finally started my journey in pursuit of a Sapropterin trial (another brand of Kuvan), after my PKU gene test dropped through the letterbox, courtesy of our cheerful local postie! Once I had negotiated the boredom of being twenty-seventh in the queue, calling my doctor’s surgery, I booked myself the required blood test. A few days later I had the blood test done and with the relevant paperwork completed, I immediately dropped it in the post box at the end of my road – so it could begin its trip to Bristol (so I am told) where it will be processed. Now I just have to wait for the results!

The latter half of the month was to be far more challenging. My daughter disclosed something to me and my wife that pulled the rug out from under both of us. We were both completely unprepared and shocked by what we had learnt. I’m not going into any details for obvious reasons, but anyone who has received out of the blue ‘life changing’ news, knows, that from that very moment, it puts you and your family unit into a bubble, and within that bubble, everything from the outside world ceases to exist. PKU went from the top of my priority list to the bottom. I had to step up and take control of the situation. My daughter and wife jumped to the top of that list, and PKU became the lesser priority.

Over the next few days, I got to know the inside of our local police station better than I had ever imagined. Reporting a crime to the police is something I have experienced before, but never have I had to report a crime on behalf of someone else; the fact that person was my twelve-year-old daughter, was heart-breaking.

The following days were consumed by endless phone calls, emails and face-to-face meetings. With my diet out of the window because of no meal planning, shopping etc; followed by the comfort eating, which is my main coping mechanism (when under stress), I couldn’t have been further out of my comfort zone talking to and meeting complete strangers.

I sat in my office one morning at the crack of dawn, my head was a complete mess. Many PKUers refer to it as ‘PKU fog’ and I had a severe case of it! I knew I had to be there for my family. They needed me, this wasn’t the time to breakdown and go into self-destruct mode. I took the day to rest up and starved myself of protein. The next day, I was already feeling a little more in control. Whilst I started to re-posture myself to better support my family, I also recognised that I had to keep reducing my Phe levels to cope.

I finished September ‘PKU strong’ because I had to. The journey continues….

A PKU Christmas

Christmas has always been a challenge for me since returning to my PKU diet,especially given my long history off the diet. Add to that my track record of sneak eating food at Christmas as a child and it’s not surprising. It’s not helpful that I’ve spent more time away from my PKU diet during my life than I have spent on it. Something I will always live to regret! During this time, I’ve tasted many foods I should never have tasted, and sadly, I can’t turn the clock back and forget all those incredible tastes and textures. Despite the PKU flavours improving over the years, the textures remain as boring as ever! If I could go back in time and give advice to my younger self, I would say ‘Just don’t try it, I promise you, you are so much better off not knowing!’.

The hardest thing about PKU is that you can’t ever escape food. It is everywhere, all the time! Walking through my city centre now compared to when I was a child (and it was just a town centre back then), I would have had to contend with the smell coming from a bakery or an old coffee shop. Now the high streets are crammed with fast-food places and restaurants with tempting aromas from cuisines all over the world. And they just keep coming, opening one after the other.

It is a normal everyday experience to see food on the tv all the time, to smell it in the street every day, but, at this time of year, it is on another level! The Christmas adverts for food on tv come thick and fast and are even more tempting than ever! And then walking through the high street, it’s just food stand, after food stand, after food stand; one stall has the biggest hot dogs I have ever seen in my life, another with roasted chestnuts, one selling roast turkey rolls and then one selling fresh donuts. When it’s dark, cold and you’re out Christmas shopping; there is this whole Christmas atmosphere, with Christmas trees, Christmas lights, Mariah Carey blaring through speakers hidden under a Christmas tree and then the amazing smell from all those food stands. How am I not supposed to be tempted by all that food?! Especially because a few Christmases ago, I wouldn’t of thought twice about bagging myself a hotdog at the very least!

Still here I am, and I know better than anyone that I am a hundred times better on the PKU diet than I am off it! It’s very hard for anyone who doesn’t have PKU to understand how hard it is to fight that moment of temptation. I gave up smoking several years ago after many failed attempts. I finally achieved it by disassociating myself with anything involving smoking. But you can’t do this with food.

I can often find myself watching total strangers as they purchase the food I crave. I stand there, glued to the spot, watching them eat it; the temptation building inside me. It’s even harder if you are with friends or family, looking on and watching them stand and order at those Christmas food stalls, soaking up the Christmas atmosphere and getting in the ‘Christmas spirit’. I never feel fully in the moment like everybody else. It’s like I’m on my own, looking through a window, feeling detached from the fun and the atmosphere. This, for me, is the moment where I have a choice, a choice to either be weak or strong. If I’m strong and don’t give in to the temptation, the moment of isolation generally passes quickly. But If I’m weak, then I’m likely to step out from behind the window and get something I shouldn’t, just so I can re-join everyone else.

Every year I am getting PKU stronger, and this year is no different. I continue to learn more about the way I think and how I approach food. It’s a continual learning curve to see how far I can push myself to be more PKU and less ‘normal’.

I haven’t had turkey at Christmas now for a few years, but the pigs in blankets have always been far harder for me to resist. This year I am going to be saying no to them. It is time to break those chains, to enable me to focus on PKU this Christmas. I have been busy planning my own PKU Christmas dinner over these past few months. After many hours in the kitchen, I have finally come up with something that I can look forward to every year. I’m looking forward to this as my new PKU tradition for future Christmases.

PKU Festive Wellington

Full Recipe Here

A massive thank you to you all for the support this year! I hope you all have a fantastic Christmas, be safe, have fun and I’ll see you all in the new year!

PKU Christmas Wellington

3.5 exchanges (less than 1 exchange per serving)

Ingredients:

700g root vegetables (I’m using parsnip, sweet potato, butternut squash, swede, carrot and sprouts)

2 tbsp olive oil (garlic infused)

1 tbsp rosemary

salt & pepper to taste

90g stuffing (made up as per instructions on packet)

cranberry sauce

Pastry:

250g all purpose mix

125g marg

60ml water

Method:

Step 1

Peel and chop the root vegetables of your choice into 1 cm cubes. Put them into a pan of boiling water and boil for 5 mins before draining.

Step 2

Pre heat oven to 180C / 160C Fan / Gas 4. Then putting the drained root vegetables into a mixing bowl and add the olive oil, rosemary, salt & pepper and mix thoroughly. Take a sheet of greaseproof paper and lay onto a baking tray. Evenly spread out the seasoned root vegetables over the greaseproof paper, before roasting in the oven for 20 minutes.

Step 3

Taking another piece of greaseproof paper, roll the stuffing into a sausage shape approx. 5 inches in length. Setting the stuffing aside for a moment, spoon some cranberry sauce onto the greaseproof paper and then add the stuffing sausage on top. Then spoon some more cranberry sauce over the top of your stuffing sausage.

Step 4

Take your roasted vegetables and crush them lightly with a potato masher and add them over the top of your cranberry and stuffing sausage. Roll the whole thing up in the greaseproof paper, folding the ends over and allowing to cool (if time, I would allow some time to chill in the fridge before step 6)

Step 5

Make the pastry by adding the flour and butter to a mixing bowl and mixing into breadcrumbs, then add the water to the breadcrumbs and mix to form your ball of pastry.

Step 6

Divide your pastry into two halves. Take the first half of pastry and roll it out on a sheet of greaseproof paper for your base. Then carefully unwrap your roast vegetable filling and transfer onto your pastry base. Trim the edges of your pastry but ensure you allow a border of pastry around your filling. Using a pastry brush, brush some low protein milk around the border of your pastry base.

Step 7

Roll out your second half of pastry onto another sheet of greaseproof paper. Then use the paper to transfer your second half of the pastry and placing it over the top of your Wellington, peeling away the greaseproof paper. Trim around all the edges to make it neat.

Step 8

Brush the pastry with low protein milk. Then with any left-over pastry roll out and use to decorate the Wellington. I’ve used a couple of Christmas tree and candy cane pastry cutters I had. Once again brush over any decorative pastry with your low protein milk.

Step 9

Cook in a pre-heated oven 180C / 160C Fan / Gas 4 for 20 mins.

Serve and enjoy with your Christmas dinner.

Another serving idea:

On Boxing Day, I love to cook ‘bubble and squeak’ with any left-over veggies and then I like to add sweet potato mash and cabbage to it. I serve this for the non PKUers with cold meats and pickle, but this year I will have my Wellington as the replacement for cold meats and the pickle will give it a real freshness!

Storing:

Slice and freeze individually. Personally, I like to use zipped freezer bags as you can let the air out, then it uses less freezer space than normal plastic containers. I normally wash them out and re-use them.

Dan’s Journal July

July started on a massive high with my eldest son (non-PKU) graduating from university with a degree in engineering. Like so many others, they had delayed his celebrations for a year because of Covid. It was time to be the proud dad and take the drive up to South Wales to celebrate his incredible achievement. It truly was a tremendous achievement, despite being forced to spend a large part of his time learning remotely, as well as being completely isolated from his family. He had even spent a huge chunk of his work placement year working from home, being denied the opportunity to travel to conferences around Europe, as originally planned.

Back home, my younger daughter has been having a tough time at school and it is having a big impact on all of us. Both my wife and I suffer from anxiety and depression, so day-to-day life can be a battle anyway. Often, when one of us is having a good day, the other is having a down day and vice versa. There are some days when we are both up, and days when we are both down. Those down days are a real slog. Add into the mix a teenage girl who is also struggling mentally and some days it feels impossible to stay afloat. The last couple of weeks, it’s taken everything I’ve got to lift my daughter up, just to get that hint of a smile that lets you know that you’re making a difference, no matter how small. Meeting teachers, making phone calls, sending emails and trying to get extra support put in place for her. It’s been plain exhausting.

My diet has gone out the window. Because of the stress and a very low mood, I have eaten things I haven’t eaten in ages. I was sitting one morning and suddenly realised (as I was eating through a packet of digestives), I was punishing myself. I was deliberately eating the wrong things in anger. In anger with myself! I don’t know why? I was just taking everything out on all the foods that I knew weren’t good for me.

Now I had to deal with a lack of energy on top of my low mood, and my stress levels had increased as my Phe (Phenylalanine) levels spiked. I was back to doing the bare minimum each day, spending most of my time on the sofa; grazing on junk food, watching tv and sleeping.

Thankfully, we quickly reached the summer holidays and as my daughter spent her weeks at home, so the atmosphere rapidly changed. A much more chilled and happier daughter meant that stress levels reduced, and I once again manoeuvred myself back on to the diet, so I could quickly regain control of my Phe levels. To say this month has been a rollercoaster is an understatement! Managing PKU when life throws you a curveball can be challenging, and that challenge never really goes away. It’s just something you must learn to cope with.

Reflecting on this month, it has occurred to me that one of my biggest personal successes has been the part I have played in my children’s lives. My children are everything to me. Despite my battle with PKU, depression and anxiety, I have always strived to put them before everything. Some days it’s beyond hard. I’m not perfect, I’m not trying to say I get everything right. It doesn’t matter how old or wise you are, everyday you are still learning, and I think it’s important to keep that perspective. You can’t be the best version of yourself if you’re not continually questioning what you do and are always open to learning new things

Dan’s Journal

May 2022

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.

Dan’s Journal

June 2022

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!

PKU vs Binge Eating

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.

Until next time.

Dan

Survey

How PKU has Affected my Finances (part 2)

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!

Stay safe.

Dan

How PKU has Affected my Finances

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 28^th 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!

Dan

Helpful Links:

National Centre for Eating Disorders

Christians Against Poverty