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.

Why Do I Struggle with PKU

The struggles with PKU can be very complex. This is because there is a wide range of challenges that can arise. Some of these are caused by factors out of my control, throwing up unexpected challenges. For example, an issue with my prescription order, causing a delay in one of the many products I rely on daily. Not receiving a delivery of my supplements (of which I must take four times a day) can have an immediate impact on my PKU diet.

The supplement is all-important because it contains all the minerals and goodness I miss from not eating high protein (normal) foods. Alongside this, and important to me, it fills me up. When I am living on a diet fit for a rabbit, I need something that’s going to keep me feeling full and satisfied. Without my supplements for a day, I feel hungrier. This means I need to eat more, and in turn my protein intake increases for the day (which I must closely monitor) raising my Phe (Phenylalanine) levels.

Just as Superman loses his superpowers when Lex Luthor hangs kryptonite around his neck. High Phe levels have a similar effect on me, because I lose my ability to function properly.

Despite the vast difference in my capabilities when my Phe levels are high compared to when they are low, I cannot detect the change as my levels increase. I find this strange because when I was a child, I’m sure I could tell if my levels were high. This is because I felt a little out of control of myself. I would suddenly become aware I was being silly and pushing the boundaries. Like the throttle jamming on a car. I knew I needed to slow the car down, but I didn’t have total control!

As an adult now, I am totally blind to it. Ask me and I will be convinced that I am doing things the same as if my levels were within range. I don’t know when or why this has changed. Maybe it’s from spending many years off the PKU diet? Maybe I’m just numb to it now. I can’t really explain it!

Being organised is the key to surviving on the PKU diet (as I’ve said many times) and it’s something I am still grappling with daily. I’ve tried to work on those areas that are out of my control. So, I asked myself, what could I do differently to help myself combat the difficulties in my supply of prescribed supplements and dietary foods? The main cause of these delays are due to late deliveries, human error or stock issues. The result was, I slowly managed to increase my stock of prescribed foods at home. This has allowed me to create a surplus, a buffer for when things don’t run smoothly. This has been a challenge due to the cost. My average monthly prescription is worth over £2,500. Consequently, my GP has been reluctant to allow me to order extra. I now ensure I have enough stock to carry myself for an extra two weeks. I have also linked up with another PKU family locally, so we can help each other out if we have supply issues.

The state of my mental health has also been an enormous factor in how much I struggle to manage the PKU diet. I take medication for depression and anxiety and have done for some time now. My mental health is something that has always been an issue for me since I was a child. Like many, I didn’t realise I was struggling with my mental health until I was much older (well into my thirties). As a young adult, it plagued me, but I just thought I had to put my big boy pants on and push through it. In the nineties, there was very little focus on mental health. No one ever spoke about it.

Mum and Dad were there every day when I was younger to put a PKU meal on the table. As a child, this meant at least my Phe levels stayed in range regardless of how I felt. As an adult, I must battle the symptoms that PKU throws at me like fatigue, depression, anxiety and severe brain fog; despite this, I must still manage my own Phe levels. Getting a PKU meal on the table when you are tired, depressed and can’t focus on anything can be impossible.

If I hit a low point when I am due to go shopping and the cupboards are bare, or maybe on a day when I’ve planned batch cooking to restock the freezer; things can go south very quickly.

If I physically can’t get off the sofa to get to the shops or prepare a PKU meal, I go into panic mode. If I get hungry, I am going to grab whatever is available in the cupboards. Worse still, it could have me reaching for my phone to get a takeaway delivered. This means my Phe levels will rise above where they should be, and tomorrow, I will be suffering even more. Extra fatigue and feeling yet more depressed will be the order of the day. I will be less likely to follow the diet (especially if I still need to go shopping before I can cook a meal from scratch).

One of my other struggles, and I know many other PKUers struggle with as well, is being judged by others because of weight and apparent laziness. This issue isn’t restricted to just people with PKU. But many people living with a hidden health condition, including those who deal with fatigue, chronic pain, and mental health issues.

I have openly spoken about my struggle with Compulsive Eating Disorder many times. Every time I speak about it, I hope it helps someone to avoid the path I took. It’s a dangerous path, especially for someone with PKU. People who judged me on my weight and laziness helped to feed my disorder. The truth is it used to bother me. It doesn’t anymore, but it’s been a long and painful road getting to this point.

Over the years, I have encountered some ignorant people. A few have been family members who should’ve had a better understanding of PKU. Some are even guilty of making me feel the need to go home and binge on so much food, I would pass out from the protein overload. I did this in part, because they made me feel ashamed for struggling in life and not measuring up.

I’ve worked hard to get past the shame of being overweight and at times unenergetic. I’ve learnt to appreciate the important people in my life who always support me and are there for me, understanding my struggles. My wife, my children, my parents and my brother are the most important people in my life. There are friends and family who have supported me over the years, and whether they take the time to really understand PKU or not, I know I am accepted for who I am. For them, I am also truly thankful.

For those who judged me and called me ‘Fatboy’. I really couldn’t care less anymore! I no longer allow myself to be affected by them. It’s taken me a long time to get here, but I now know my worth! To all of those who understand what I’m talking about, stay strong, be yourself, and surround yourself with people who love and accept you for who you are.

‘But you’d have to walk a thousand miles in my shoes, just to see what it’s like to be me’ – Eminem ‘Beautiful’.

This song really resonated with me during the peak of my struggles to get a handle on PKU again. When I felt no one understood what I was going through. Although it was a dark time for me, I realise now I am not alone. There are plenty of people who care and understand. Some with PKU and some without.

My message to you is don’t suffer on your own like I did. If you give the people closest to you a chance to step up, they won’t disappoint you. If you don’t have anyone close to you, then reach out to the PKU community via a Facebook group. There are many there who are always ready to support anyone in need!

Failing this, here are some support numbers to call. Please, DON’T be alone in your battles!!!

Helpful links:

Samaritans 116123 – UK ONLY

befriendersworldwide – have contacts in 51 countries

Dan’s Journal February

A phone call from the appeal board got February off to a great start. Just a couple of days into the month, I learnt that we had won our case and secured our daughter a place at the best school in our area. So much excitement was to ensue. All our hard work, tears and stress had paid off; now as a family, we would be able to start rebuilding our lives.

It wasn’t the start of the month I had expected. The results of our appeal had come in, in a matter of days, not weeks, like we had been told. I was really flying high and smashing the diet in the process. With such a weight lifted off my shoulders, I turned my focus more towards ‘Truth About Life With PKU’. In the pages and pages of notes I’ve made over the last couple of years, I had long abbreviated the name (Truth About Life With PKU) to TALWPKU. I sat at my desk one morning with a coffee in hand. On the wall in front of me was a post-it note with the heading ‘TALWPKU’ on it, and it dawned on me, if I removed the ‘W’ and replaced it with a ‘K’, it became ‘TALKPKU’.

TALKPKU is the name of a new project I have started working on this month. It has been in the back of my mind for about 18 months, and I felt now was the perfect time to start moving forward with it. The TALKPKU project will be aimed at raising awareness for PKU. I do have a long-term goal, but as I am keenly aware, achieving this will only be possible if I stick to my PKU diet. I know I need to keep the pressure I put myself under to a minimum, and it’s the key to me succeeding. I am so excited about this project that it is so hard not to tell all now! But a step at a time, I will shape TALKPKU over the coming months. I ask you, please keep following Dan’s Journal to find out more and see how the project is progressing.

When the PKU diet and I are working in tandem, my productivity levels are 10 fold. There is no stopping me. I can multi-task and manage my time so much better; these two things are non-existent off diet. Now the school pressure is off, I plan to capitalise on it!

The 28th of February was Rare Disease Day and my birthday! Sadly, all my birthday plans had to be postponed after I managed to catch Covid. So, with a headache that felt like someone was ringing ‘Big Ben’ in my head, I spent my birthday feeling rather sorry for myself!

It can take nothing more than a dose of Covid to throw the PKU diet in the air. Feeling as rough as a bit of sandpaper, I ended up grazing on whatever I could find lying around the cupboards and fridge. Fortunately, I had just baked a fresh loaf of PKU bread (which helped). One good thing about Covid is losing your taste. It isn’t such a bad thing when you are on the PKU diet. I managed to use up a few of those PKU prescription products that have been kicking around in the back of the cupboard.

Despite the bumpy end to the month, February has been kind to me. Plenty of positives to take away and build on in March. The birth of TALKPKU, along with my daughter starting a new school has been some of the highlights for me. Along with another milestone passed this month was Dee and I celebrating our 4^th wedding anniversary! I don’t know where that time has gone. I’d like to take this opportunity to thank my amazing wife for all her love and support. Having support without being judged is incredibly important when negotiating life with PKU. Maybe we should consider a day to give thanks for all the support and dedication our hard-working parents, families, friends and carers have given / give us? Who is your PKU rock?

Image provided by Engin Akyurt

Fight or Flight PKU

One of the biggest challenges I find with an invisible disorder like PKU is nobody ever sees the inner turmoil. My battle with PKU is completely down to me. Some days it feels like I’m floating in space, alone. This journey is mine to take, and I take it solo. Some days I feel like I’m at war; me against the world. I must plan, fight and defend continually, just to stay in control of my destiny. It’s exhausting, but I can’t stop. Yet on the outside, I appear like any other ‘regular’ guy going about his daily life.

PKU is like a ‘monster’ that lives inside of me. It’s like having a personal devil willing me to fail, forever in the background chipping away at me. I can keep ‘him’ quiet and locked away in a cage, but only if I eat the right foods and stick to the PKU diet. If I deviate from the diet, even the slightest bit, his voice starts to get louder. ‘He’ uses distracting tactics, stopping me from creating my meal plans or batch cooking; making me reach for the wrong foods. Eventually, escaping from his cage, ‘he’ takes control. Once he is in control, I am out of control and at the bottom of what I call the ‘PKU spiral’.

This is the lowest point that PKU brings me down to and it’s a lonely place to be. Sometimes I have the strength to react quickly and fight back straight away. If I eat nothing but low protein foods for 24 – 48 hours, I can block him out. But if I can’t, it takes a huge amount of energy, especially when I am already struggling with fatigue. If you can imagine a Nasa space shuttle launch, that is how I would describe the energy needed to shove ‘him’ back in his cage.

The ‘monster’ has been in charge of the steering wheel for more of my life than I have! And ‘he’ believes he should still be driving. ‘He’ doesn’t want me to succeed and ‘his’ voice is in my ear, tempting me when I am at my weakest. Once you have been off diet, he always has leverage against you and ‘he’ will use it against you!

Only in recent years have I understood how much PKU has had control over me. More than I had ever realised. The impact on my life has been far greater than I had ever given it credit for. I have spent much of my adult life ignoring the fact I have PKU. I had just put it in a box in the back of my mind and shut it away. I have only recently realised this ‘monster’ has been running things for most of my adult years. Now at 46, I am starting to regain control of my life.

It has been about a year since I discovered I hadn’t been in the driving seat all this time. The truth was ‘he’ had been out of his cage for two decades now, and this meant it was going to take a lot of effort to get him back in again and even more to keep him there!

Life with high Phe (Phenylalanine) levels, combined with stress and high-pressured situations are dangerous territory for a PKUer to walk in. In these situations, I find I am prone to acting irrationally, leading to very poor decision making. Worse still, if I need to make big decisions quickly I will run for the hills and hide because I can’t cope with the situation.

High Phe levels seem to cause a complete breakdown in my capability to quickly assess and deal with intense situations. My natural reaction is to go into fight-or-flight mode. Looking back through my life, the fight-or-flight mode explains so many of my struggles.

As an upper junior (year 5-6 now), I was an angry child. The real me was terrible at standing up for myself. I was hopeless at standing my ground. However, during this period of primary school, I was always fighting. Often over the silliest things. As I reflect now, I can see that I had zero tolerance. Someone simply calling me names would very quickly have me wildly swinging for them!I would often find myself looking for an excuse to fight. If I was feeling irritable, I would scour the playground looking for somebody who was picking on someone else, and then I would start on them. It was as if I had no control over my emotions. The anger just came out of its own accord. I do question now, if this was the first time I had experienced ‘the monster’ taking the wheel off me?

One day during my final year in primary, I had gotten myself into a blind rage with a kid who was always deliberately winding me up. I snapped and got into a big fight with him. Not only did I hurt him, but I accidentally hit the teacher when he was trying to break us up. Fortunately, the teacher understood that I had caught him purely by accident, but the incident really did scare the hell out of me!

It was at this point, I realised I couldn’t go through my life fighting. I had become frightened of myself and so I suppressed my anger, making flight my new default reaction. I went the other way and just absorbed anything that was thrown at me. I managed to get through secondary school without getting into a single fight. I did take a few hits from kids at school, but I just sucked it up and walked away! I guess you could say I grew myself a thick skin.

As my Phe levels get higher, I’ve learnt the thick skin I’ve developed seems to get thinner. When it can’t absorb anymore, I go into flight mode. I learnt to control which way I would go; to fight or to fly, because I’d become scared of what damage I could do as I grew bigger and stronger; hence, I always chose to fly. Sometimes, flying instead of fighting your corner is the wrong thing to do. Sometimes you need to stand up for yourself. But I can’t.

If you ask anyone who knows me, they will tell you I am a kind, caring and gentle person. When my PKU isn’t under control, it smothers me and my ability to think rationally. It will heighten my sensitivity to my surroundings, noises, conversations and distract me; keeping me from focusing on what I am trying to achieve. When it is not under control, it influences my decisions and stops me from being the real me. I have no choice but to fight my war, for every hour of every day, for the rest of my life. There are people working hard to provide us with new treatments; who knows, maybe even in the future, a cure! A cure would banish ‘the monster’ from my life forever, and that would be amazing. But every new treatment will at least make the cage stronger. It will make his voice quieter. Increasing the chances of me being in control of my destiny and reaching my full potential in life. This is my dream and no doubt a dream I share with everyone who struggles to live with PKU.

Images courtesy of Specna Arms, Lil Artsy & Rodnae Productions

Dan’s Journal January

I have been battling with hunger recently. Some nights I have gone to bed early just to try to get past it. I lay in bed at night, still hungry, my stomach rumbling in protest. In fact, I think it may be engaging in deep conversation with itself, as the gurgles respond to the rumbles. In the morning I wake up so hungry it’s not even funny!

I’ve been starting the days with larger portions of low protein foods, but I’m still feeling fatigued. My head is clear and I’m ready to get stuck into the day, but my energy levels are low. I have found myself taking extra time for breakfast. First, I’ve been taking my supplement/formula as well as eating Weetabix, then an hour later, having protein free toast and a coffee.

I manage to get going, eventually; it’s just taking me longer than normal each day. I’m not used to this. Normally, I am an early bird. I get all my best work done at the beginning of the day. I love nothing more than to see the sun rise each morning. It sets me up!

After months of hard work, my daughter is finally getting more help and support. It’s clearly making an enormous difference. Enabling us all to focus more on our own well-being and importantly for me, my PKU diet. Having a chance to take stock, get organised and catch up with some batch cooking has been invaluable.

As January progresses, I’m feeling mentally stronger and determined every day. This is having a positive knock-on effect, as I’m getting more organised as time goes on. I have been eating more regularly and consistently, not having to starve myself in a bid to control my Phe (Phenylalanine) levels. This has also really helped me combat my recent lack of energy.

I have been working hard alongside my wife Dee, desperately trying to get our daughter a new school placement since November. It’s been a hard road so far, and that same road has only grown longer this month. After hearing we’d been turned down for all our applications, we had now been forced into entering the appeals process. It’s an endless battle, but a battle I can cope with now I have less on my plate!

As I have continued to consider what I want to achieve to improve PKU life for everyone, I have never felt such a sense of pride about my PKU. PKU hasn’t just happened to me, it is me! For the first time in my life, I feel like I want to start a conversation about it with all the people I meet. I have a new confidence. I don’t want to shy away or hide from it anymore. Ever since I was a teenager, I have deliberately hidden PKU from everyone possible. I have been hiding a part of myself from the world! Now I want to share it with the world!

Raising awareness is something that is becoming ever more important to me, and I know it is part of what I want to be involved in moving forward. I am a writer and I especially love writing about PKU. The burning question in my head now is, what can I do with it?

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 October

October kicked off with weeklong celebrations for my non-PKU brother’s fortieth birthday. My parents joined us from Spain, where they have lived now for almost twenty years, so it’s a rarity to have the whole family spending a weekend together. My brother chose to do this on a canal boat, and it couldn’t have been a better weekend.

On day one and being the early riser, I took the early morning shift, sitting at the rear of the boat navigating the sixty-foot-long barge through the winding canals of Hampshire. The scenery was just beautiful.

I always find PKU easy around my family. I just slip back into the old habits. Mum always clicks into PKU mode so effortlessly. She is enviably highly skilled at adapting meals to fit around PKU, often without even a pause for thought. Back at her home, I am always intrigued by how her cupboards are always stocked with everything she needs. On the rare occasion that an ingredient is missing, she always amazes me by producing some random item from the back of the cupboard that will perfectly replace it! Sadly, I don’t have the same knack that my mum displays in the kitchen. But I so wish I had!

It was a fun weekend despite embarrassing myself in front of a pub garden full of people. It was our first evening, and we had moored up for the night outside a lovely riverside pub. Despite being chilly and the sun setting, every table in the pub garden was occupied. Stepping on to the bank with the rope in hand, I reached down to tie the boat up; when my jeans split from front to back with the loudest rip I’ve ever heard in my life! This was followed by an enormous cheer from the pub garden. So, with nothing else I could do, I turned and gave a little bow to my delighted audience, and then quickly disappeared back on to the boat.

My food highlight for the weekend was when I discovered that vegan applewood cheese (from Asda) tastes very much like you’re eating bacon. It was another cold crisp morning and as I steered the boat towards our last destination; A family member brought me out a toasted mushroom and smoked cheese sandwich with tomato chutney. It was a real treat!

Overall, my PKU diet had been on a far more positive track this month. There have been a few difficulties, but it has once again, been an extremely stressful month as my wife and I tried to support our daughter (and each other) through what was an incredibly challenging time.

It’s been hard when I have frequently felt like I’m failing as a father. It stings somewhat. I have felt that all my hard work and sacrifices have been for nothing. It has been hard to digest and move past. This was how I hit my lowest point this month, and I cracked under the strain reaching out for something to make me feel better.

Once again, I fell into old habits. I found myself sat in the car at the local McDonald’s drive-thru where I tried to find some refuge by binging out. The few minutes of euphoria were abruptly quashed by the feeling of disgrace, disappointment and dread. What had I done? I’d let myself down, and I’d let my family down BIG-TIME! What good was I going to be to them now for the next 24-48 hrs? I was so cross with myself; I forced myself to sit and work out just how much protein I had devoured in less than twenty minutes.

I sat for a moment astonished as I quickly double checked the math again. I had just eaten 78g of protein in one sitting (what on earth was I thinking?!), this is happens when I feel sorry for myself. This is what a moment of weakness can do, in what had been probably one of my most stable PKU diet months of the year. I had to make sure this was just a blip, and I went back on diet immediately. I would not let this stop me from supporting my family, ruin plans or set me back; like it has repeatedly done in the past.

After a couple of days of a ‘super strict’ PKU diet, I was back to feeling ‘normal’ and once again able to sit here at my desk, not only to continue journalling but also to deal with the bumpy road of life I am currently travelling along. Keeping PKU at the centre of what I do is becoming a forever bigger part of my routine and journey. Spreading awareness and sharing my story is growing evermore important to me, and as I move forward, I would like to do more, and be more involved in helping to change PKU for all of us.

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….