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?

Banana Bread

0 Exchanges

Ingredients:

3 very ripe medium bananas

3 tbsp of PKU egg replacer

100g of soft light brown sugar

150ml of sunflower or vegetable oil

275g of low protein all-purpose mix

1tsp ground mixed spice

1tsp baking powder

Method:

Step 1

Preheat the oven to 180C / 160C Fan Asisted / Gas 4 and grease a 900g/ 2lb loaf tin. Peel the bananas and mash with a fork. Tip into a large mixing bowl.

Step 2

Add the PKU replacer into a small bowl and add enough water to mix it into the same consistency as mayonnaise. Then add the egg replacer, oil and sugar into the large mixing bowl and use a fork or whisk to combine. Add the flour, mixed spice and baking powder,then whisk together until thoroughly combined.

Step 3

Pour into the prepared tin and bake for 30mins. Remove from oven and cover with tin foil to stop the top burning and cook for a further 30 mins. Check by inserting a skewer into the centre of the bread comes out clean to ensure it has cooked through. Cool in the tin for 10 mins, then turn out onto a wire rack serve warm or cold.

Notes:

It does dry out after a couple of days like PKU bread, but will work great as pudding by adding custard over the top to give it added moisture.

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 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….

A PKU Christmas

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

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

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

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

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

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

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

PKU Festive Wellington

Full Recipe Here

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

PKU Christmas Wellington

3.5 exchanges (less than 1 exchange per serving)

Ingredients:

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

2 tbsp olive oil (garlic infused)

1 tbsp rosemary

salt & pepper to taste

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

cranberry sauce

Pastry:

250g all purpose mix

125g marg

60ml water

Method:

Step 1

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

Step 2

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

Step 3

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

Step 4

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

Step 5

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

Step 6

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

Step 7

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

Step 8

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

Step 9

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

Serve and enjoy with your Christmas dinner.

Another serving idea:

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

Storing:

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

Dan’s Journal 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

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