The Last 15 Months Part 2

May 2024

It was only a few weeks before we were due to take our daughter and ourselves on a much-needed break to Butlins when a letter arrived on our doorstep. It was a Section 27a from our landlord (otherwise known as an eviction notice). We had a month to find a new home. We were out. No arrears, no issues from our end at all. Chaos and blind panic ensued.

Now I find myself frantically house hunting on top of everything else I have going on (see Part 1), along with packing down the house single handedly. My wife, Dee, was laid up in bed getting over a double infection (on top of her usual complex health conditions), fighting to be fit to go away on holiday.

PKU wasn’t even on my mind at this point. How am I supposed to find time to plan meals in advance, shop and batch cook? I was continually grabbing food on the go, while attending never-ending appointments with counsellors, housing support groups, never ending unplanned meetings with my daughter’s head of year and pastoral support teams, I also had various daily and weekly hospital and doctor’s appointments for my wife; all while squeezing in house viewings in between as I went. Life literally couldn’t have been any more stressful!

It was several days later that I discovered the eviction process took more like six months before it would reach the court. Given this new information, we decided to go ahead with our Butlins break as planned, clear are heads and then return and push on with house hunting.

July 2024

Three days before we were due to head to Butlins, my wife received a text message from her estranged family (a very long and complicated story) to announce the death of her Mum. A vague message with next to no detail other than a date a few days before. It’s hard to put the feelings into words. We had already had the rug pulled out from under us with the eviction notice; this was just too much. We just sat in silence, looking at one another. Aside from the obvious grief of losing her Mum, we both knew that this was going to reignite tensions within the family. The family we had moved hundreds of miles to get away from. To escape abuse and lies that had already devastated our family and forced us to move mid-COVID.

We weren’t wrong in dreading what games and nastiness would be directed at us by the family this time. It started with the withholding of all the information on the death of Dee’s Mum. (Despite this, we decided to still head to Butlins for our daughter’s sake; she was looking forward to it). All further communication (from Dee’s family) after the initial message was cut off. We knew nothing of the circumstances or her Mum’s whereabouts. I set about ringing around hospitals and funeral directors from our chalet in Butlins, for hours, trying to find out any information I could. Everyone I spoke to had been told not to talk to us. We couldn’t find out anything; it was just a wall of silence.

After being helped by a good friend, we managed to obtain the date and time of the funeral. With much deliberation, Dee decided she needed to go. Why should she be stopped from going? She/we had done nothing to deserve the way we were being treated.

It was a very long and sombre drive to the crematorium. When we arrived, we were a few moments behind everyone else, although nothing had started yet. But we were refused entry and had to stand outside in the foyer, my wife distraught and refusing to leave until she had at least had some private time with her Mum. We stood there helplessly while the police were called on our request.

We never got entry to the service and instead had to listen to the whole service through the closed doors from the foyer, while trying to negotiate for my wife to at least get some time with her Mum afterwards. All requests were refused. The service finished and the guests were ushered out a back door to avoid us. They all left without saying a word. And not a word has been said since. It was devastating to see my wife go through this. My daughter didn’t deserve not to be considered by them either. How do you explain this to a teenager who is already battling mental health issues (many caused by this family in the first place)? It was heartbreaking. We could do little more than come home and deal with the issues we still had waiting for us at home.

The 4-week deadline to vacate our home passed and we are no closer to finding somewhere to live, due to our current circumstances. It became obvious that finding a new place to live was going to be a bigger challenge than we’d ever imagined. The rental market was like I’d never seen it before. Rental prices had gone through the roof and much of it was well out of our budget. To my surprise, whatever was within our budget required a guarantor, regardless of whether we could afford the rent or not. I am a 48-year-old man with a family, so who on this earth am I meant to ask to be my guarantor? For the first time in my life, it was looking like I could be made homeless, along with my vulnerable teenage daughter and disabled wife that I care for, not forgetting my PKU diet and other health issues I needed to manage. I was beside myself with anxiety.

I was eventually put in touch with an anti-homelessness charity called Launchpad, who was there to support me in finding a home and/or temporary accommodation. It was through the charity that I discovered temporary accommodation would more than likely be a hotel room and we could be there for months. To manage my PKU, not having a kitchen wasn’t an option. I emailed my PKU team at Guy’s and St. Thomas, who are an amazing support team. They wrote a letter stating the importance of a kitchen for managing my PKU diet, along with other information about PKU. I added this to a growing portfolio of evidence that the charity helped me compile for our case for social housing. I have never had to deal with so much paperwork in my life! I don’t know how I would’ve managed to get it all done without them. Launchpad were fantastic!

August 2024

With our main portfolio of evidence submitted to the council to further our housing application. It was now a waiting game. What would come first, an offer of social housing or the eviction date?

Meanwhile, we tried to continue our private rental search, but it was hard to get a viewing; we just weren’t meeting the criteria to even view places. When we managed to view properties, we were putting in an offer regardless of the condition, but we were declined every time. It was demoralising. Lots of the properties were in pretty poor condition. It is quite an experience to be made to feel not even worthy enough to pay through the nose to live in some over-priced hovel that a landlord has the cheek to even advertise as a home.

The days dragged by as we tentatively waited to find out our fate. The private rental market continued to look futile as we waited for the local council to chew over our application and for the court system to decide our fate with the eviction. What would happen first?

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The Last 15 Months

December 2023

Welcome to Dan’s Diary. Navigating PKU life can be challenging at times, and here, I want to share with you my personal experiences; the ups and downs of life with this rare disorder.

It’s been a long time since I first started writing this blog. It’s the longest it has ever taken me to write one. It’s not because I have had nothing to say, but because life has been throwing a lot in my path.

It started on Christmas Day in 2023 when I developed a burning sensation in my chest. I was forced to abandon cooking our Christmas dinner, leaving it half-cooked, for a trip to the local hospital. After a short wait and being wired up like a Christmas tree, I was given an ECG. My observations came back all clear (all is well with the old beatbox!). Following much back and forth from the medical professionals, I was diagnosed with Shingles. Eventually, with my medication in hand, I returned home (at 7 pm) to try and salvage Christmas dinner.

The medication I received had to be taken every 4 hours. This included during the night. Having to wake up in the night to take medication destroyed my sleep pattern. I am a heavy sleeper and can’t get back to sleep for anything, once I’m awake. In the days that followed, I was like a zombie as my days began at 3 or 4 am and it doesn’t take many nights like this to put life into a wobble!

The lack of sleep and energy affected my ability to manage my PKU diet and left me feeling pretty rubbish over the Christmas period!

As you can imagine, I was so grateful to wake up in 2024. I’m not one for New Year’s resolutions, but I love drawing a line under everything and the feeling of a fresh start. There is nothing better than closing the book on all the ups and downs of the previous year. I find something invigorating about the optimism of a new beginning. That notion that things can be better and anything is possible; it’s almost nostalgic for me. The opportunity to learn from past mistakes and build on any successes I can claim from a year passed. I do love New Year!

I am no stranger to fresh starts. It’s how I approach the PKU diet daily. No matter what happened on the diet yesterday, today is a fresh start. Always a fresh bank of exchanges (my protein allowance) for the day ahead, regardless of a previous good or bad day. My daily focus is taking all four of my supplements and hitting my allowed target of exchanges.

Since returning to my PKU diet, I’ve always found it hard to plan my meals. I like to go with the flow and eat what I am in the mood to eat (I guess I’m clinging to the old habit of being off the diet), but this method contradicts how PKU works, often putting me at the disadvantage of finding myself inappropriately organised. It’s something I need to work on in 2024.

Jan – April 2024

The day arrived when my daughter returned to school following the Christmas holidays. It was time to rediscover our daily, family routine after the festive holiday hiatus. I love the daily routine that term time brings. I thrive on it. I am always up early; a fully paid member of the 5 o’clock club. It’s my most energised time of the day. Nothing is better than seeing the first light in the morning, accompanied by the silence broken by the birds singing. I make the most of this quiet time to get on with work and chores around the house.

My daughter has been suffering from mental health issues caused by bullying at school for a while now. Dee and I have been working hard to support her and set up as much support from outside agencies as possible. This meant weekly, often daily meetings with the school and other healthcare professionals. But truth be told, everything has been painfully slow at getting activated and we were helplessly watching our daughter sliding further into darkness. It was truly heartbreaking. My daughter’s slow spiral had caught me unawares. It was so gradual at first, that I hadn’t noticed the severity of its impact on my life. I thought I had a handle on everything, but I was unaware that things had changed so much.

Life had been becoming more and more about supporting my daughter and I’d had to learn a whole new way of parenting. Everything I had ever learned about being a good Dad, suddenly seemed to count for nothing. The rule book had been ripped up in front of me. This realisation meant my priorities had to change overnight. I already care for my wife who has many health conditions and now I was stepping up as carer for a teenager who was becoming increasingly isolated.

My once vibrant, fun-loving daughter who attended many clubs and sleepovers, had dropped out of all her clubs over a short time. One by one she had lost her friends and became a recluse who never left her bedroom and who cried herself to sleep at night. It was devastating to watch. My daughter, a bright child with good grades and perfect school attendance, became the opposite. Her attendance had started to slide and her grades began to slip.

Despite our daily communications and meetings with the school staff and arranging counseling within the school. Regardless of the many emails and appointments for extra support from outside charities and the local council, things were still skidding in the wrong direction. We were helpless.

During this time, Dee’s (my wife) health was taking a new pattern of decline. It had been in decline for years, but something had been shifting. This change meant she was becoming increasingly frustrated at being unable to do more to help and support us both. This only aggravated her already poor health even more and she was going through a miserable time of her own. The start of this year has seen Dee fighting off infection after infection in addition to the conditions she already has to contend with on a normal day. It has been tough to watch. Seeing someone you love going through this and being unable to wave a magic wand, is unimaginably hard.

Managing my PKU diet around all this had become near impossible. My days had no routine, every morning I got up not knowing what the day would bring, a trip to the hospital with Dee, a meeting in school with my daughter, or both! I was having many bad or non-existent days on the PKU diet. I then followed these days by cutting out protein completely, trying desperately to reset my Phe levels. This high and low trend in my Phe (Phenylalanine) levels continued for months as I tried to do the diet when I could. I stopped sending in bloodspots because I didn’t see the point; I knew I was failing at the diet and why shame myself by letting other people see it? The feeling of guilt, shame and embarrassment for not succeeding with the diet can be epic. It’s something I struggled with daily, and it is exhausting, depressing and a downright lonely place to be.

As we approached May, the meetings and emails from school had peaked, becoming a part of my daily routine. My daughter’s absence had become so bad that she spent almost as much time at home as she did in school. We decided to take a few days away to Butlin’s to get away from all the stress and see if we could reset things. Unbeknown to us though, by the time we returned from Butlins, things would be even more complicated…..

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PKU Chocolate Log

Protein Guide – Entire Chocolate Log is 4 Exchanges. Please note, if you use just Mevalia Chocotino and no dark chocolate the entire Chocolate Log is 1.5 Exchanges.

Ingredients:

For the cake:

6 tsp of PKU egg replacer

200mls of water

170g caster sugar

170g low protein mix

4 tbsp cocoa powder

1 tsp baking powder

For the filling & icing:

25g butter

0.5 tbsp golden syrup

140ml pot Elmlea 100% plant double cream

70g chocolate (I have used half dark chocolate & half Mevalia Chocotino)

100g icing sugar, sifted

icing sugar to decorate

Method:

Step 1

Heat the oven to 200C/180C fan/gas 6. Line a baking tray with baking parchment. Place the egg replacer and water into a bowl and beat together. Then add the caster sugar and whisk together until its mixed.

Step 2

Mix the flour, cocoa powder and baking powder together in a separate bowl, then sift onto the egg replacer mixture. Whisk this together until its completely mixed, then pour into the tin. Tip the tin from side to side to spread the mixture into the corners. Bake for 15 mins.

Step 3

Lay a sheet of baking parchment on a work surface. When the cake is ready, tip it onto the parchment, peel off the lining paper, then roll the cake up along its longest edge with the paper inside. Leave to cool.

Step 4

To make the icing: melt the butter and dark chocolate and/or chocotino together in a bowl over a pan of hot water. Take from the heat and stir in the golden syrup and 3 tbsp double cream. Beat in the icing sugar until smooth.

Step 5

Whisk the remaining double cream until it holds its shape. Unravel the cake, spread the cream over the top, then carefully roll up again into a log.

Step 6

Spread the icing over the log, then use a fork to mark the icing to give the effect of tree bark. Scatter with sifted icing sugar to resemble snow and decorate.

PKU No ‘Sausage’ Rolls

Less than 0.2g exchanges each

Ingredients:

170g sachet of Paxo stuffing (made up as per instructions on the box)

400g of low protein all-purpose mix

200g of Marg

Water

Method:

Step 1

Preheat the oven to 180C/ 160C Fan/ Gas 4. Take a baking tray and line it with grease proof paper.

Step 2

Add the low protein mix and Marg into a mixing bowl. Using your fingertips, rub the flour into the Marg until it forms breadcrumbs. Next, add water to the breadcrumbs a tablespoon at a time, mixing into your breadcrumbs until it forms your desired texture (I personally prefer it very slightly tacky as it holds together better after being cooked).

Step 3

Split the pastry into to 2 halves (just for ease). Take the first half and roll it out on a piece of grease proof paper. Sprinkle some low protein mix on top as you roll. Then trim the edges so you have a neat rectangle of pastry. Take a handful of the stuffing mix and roll into a sausage in your hand. Place the stuffing sausage along the longest edge of the pastry rectangle. You may need to join a few stuffing sausages together to do this. Using the greaseproof paper, roll the pastry around the sausage inside the greaseproof paper and then peel away the paper at the last moment. Gently firm the join on the stuffing roll and then roll back on to the greaseproof paper before transferring to the baking tray and rolling it off. Repeat this until you have used all the pastry and stuffing mix.

Step 4

Brush the pastry with oat milk before placing the baking tray in the oven and cooking for 20 mins. Once removed from the oven, allow to cool before cutting with a sharp knife to desired size.

Notes:

Please note that Paxo stuffing has the lowest amount of protein content. I cut mine into ‘party sausage roll’ size and this recipe made thirty-six rolls. The protein content for the stuffing is 6.5g and so worked out at less than 0.2g of protein each.

I would recommend you take the protein content of the stuffing you use and divide it by the number of rolls you divide your batch into at the end, so you know the protein content of your own individual rolls.

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 August

During the first couple of weeks of August, my wife has been struggling more than normal with her own health. Alongside her being diagnosed with Anaemia and being referred for an investigative procedure, I have been going through a period of self-loathing. Punishing myself quietly in the background with food.

The result; my brain is feeling crowded. I have so much going on inside my head, but it’s missing any clarity. My mind is continually jumping from one thing to the next and my brain can’t keep up. I am jabbering away at my poor wife (thinking out loud), trying to make sense of my own thoughts. An audible brain fart which results from having a succession of dreadful days on diet. I feel unsettled, and this is where I must be careful; it’s the point where I unpick any progress and achievements I’ve made over recent months. I change my routines and abandon current projects for new ones, with no thought or rationality (anything from hobbies, planned outings, to career paths).

I stop and force myself to seek some solitude. It takes time and energy to clear my head. My mind is like watching the cycling in the Olympics. The team pursuit where you have two teams of four going round the indoor track. The leader keeps dropping to the back as they continue going round and round. Before you know it, you don’t know who anyone is. You’ve completely lost track of everything. You have no choice but to sit and wait for the race to end so you can catch up with what’s happened.

Finally, with my mind empty, I can think back over the recent days or weeks. I know I have already started unpicking things and damaging some of the progress I’ve made recently. Now it is time to return to reality, like a butterfly breaking out of its cocoon. I emerge, ready to break the cycle and make a stand. I need to make a stand against my inner bully! The inner bully who keeps trying to tell me that I can’t do it! That I’m useless and will amount to nothing but a failure.

It’s hard when the bully in your life is tearing everything down, hitting that vulnerable spot with no mercy, again and again. It’s hard when that bully is the voice in your head. There is no escaping it. There is no reprieve. You can’t hide or avoid it. It follows you around night and day, and it grinds you down until you give in; you sit on the couch and let go of all your dreams, and all the plans you’ve been working hard to build. You let it all go because you are tired and there is nothing else you can do to fight it.

I found Jesus a few years ago, and He lifts me up in these dark times. He gives me the strength to fight my inner bully. Once I have retreated into my cocoon of solitude and cleared my head, the Lord gives me the strength to break out like a butterfly with renewed strength, enabling me to keep fighting back. Without Him, I wouldn’t be able to keep emerging from my cocoon, to step out from my safe space. When my mind runs away with itself, solitude is my comfort blanket.

After reclaiming my mind and regaining my strength, I can see the positives in front of me. I may have undone some of my progress, but I realise I haven’t got to start back from the beginning. Sure, I’m going to have to work harder to catch up, but I’m not at the beginning of the journey, I’m still very much on the journey!

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

Living with PKU

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wishing you all the best until next time.

Stay safe.

Dan

Goodbye PKU

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Photo credits: Shutterstock