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?
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.
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!
I’ve been excitedly counting down the days until this month. Last September, over a pint in ‘BrewDogs’, I decided to go to Download Festival this year with my non-PKU brother Gareth. The plan was to camp for three nights and embrace the whole festival experience. This was to be my first ever camping trip since returning to the PKU diet.
I had initially planned to take a little gas stove for cooking, so I could cook protein free toast to have with jam as breakfast and again later for an easy snack. Also, boxes of protein free pasta mixed with either pesto or ‘Dolmio’ stir-ins and then I would add mushrooms, peppers and sweetcorn, etc.
It was a few months after I made my initial plans; I discovered my bro was going to be rocking up in his campervan. We not only had the facility to cook, but also a small fridge! This was a game-changer for managing my PKU diet. I’ve got to say I’m loving campervan life now. Maybe I’ll even get myself one someday! We arrived early evening on the Friday and after setting up the van and awning, we made a start on dinner. To start the weekend off, we had Aldi’s ‘Salt and Vinegar No Fish Fillets’ with some left-over chip shop chips. It was a tasty way to start off the weekend before heading over to the main stage to watch Kiss perform their last ever UK performance. A fantastic first night and first ever experience of Download.
Fortunately for me, although my bro doesn’t have PKU, he has, in recent years, become vegan. He is always coming out with new and exciting ideas that are easily tweaked to suit my PKU diet. We lived off gnocchi, asparagus and broccoli with pink beetroot pesto for the rest of the weekend and cereal for snacking on. I must admit I didn’t feel hungry once.
The weather was incredible all weekend, and the atmosphere was just amazing. I ate well and yet still stayed on diet and took all my PKU Sphere. Although I will say, the supplements don’t go down great with a next morning hangover – I may have had a little too much rum on Saturday night! But you must expect this when you get to see both Megadeth (for the first time) and Iron Maiden back-to-back!
An amazing weekend was had by all and when we packed up and drove out of Donington Park on Monday morning despite feeling exhausted and sore, the only thing on our minds as we drove off-site was, we have totally got to do this again next year!
Reaching the age of sixteen, and more importantly, the end of my PKU diet, had been a goal I had focused on for as long as I can remember. Despite growing up knowing there was an end game, I didn’t just reach sixteen and say “Goodbye PKU, hello freedom!” It just wasn’t that simple.
When I was young, I had no idea what freedom of eating even looked like. I just knew that it meant being the same as everyone else. The need to not be different was all that drove me in those early years. It was the lack of fulfillment in my diet, at about ten or eleven years old, that fuelled my interest in the forbidden foods. Whilst I was wary of trying new things, I was driven by a new awareness that everyone around me wasn’t just rushing through every mouthful, just to clear their plate. People around me were really enjoying what they were eating; comments like ‘this chicken is so tender’, or ‘it’s not chewy at all’ really opened my eyes to the lack of different textures on my plate.
Whilst some moments were very much planned, like my first ever ‘Big Mac’, many big moments of stepping away from the PKU diet were just impulsed decisions. A moment of bravery, driven by curiosity and a real need for a variety of flavours and textures. The world had so much more to offer me! I couldn’t wait to break free from my boring PKU diet of fruit, vegetables and other synthetically processed foods and flavours. I always had this image of a wild-haired professor like ‘Doc’ from ‘Back To The Future’, in a lab somewhere in the world, concocting all these disgusting formulas; and using PKUers like me as his unfortunate test subjects!
Coming off the PKU diet was a very strange time for me. I was leading a double life. By day, at college, I was leading a perfectly normal existence; nobody knew about my diet. I went through my days as just one of the lads, eating sandwiches out of the cafeteria at lunchtimes, just like everybody I hung out with.
By night and at the weekends, I was very much still a PKUer. I didn’t tell my parents that I was slowly coming off the diet because I didn’t plan it. It just naturally happened over time. If I’m completely honest, the journey off of my PKU diet began when I started gaining my independence. Knowing I would be coming off the diet in a few years. Bite by bite, I slowly started eating my way towards freedom. I didn’t notice any changes in myself through those years (every PKUer whose been off diet will tell you the same!), this gradually encouraged me to keep raising the bar and pushing the limits of my protein intake.
When I finally turned sixteen, in my head I was free, but in practice I found it hard to just walk away from my supplements. I didn’t have the first clue how to start a conversation about stepping away from the diet with anyone. I certainly don’t recall having a conversation in my teens with my PKU support team and dietitian. We never spoke about what would happen when I turn sixteen; how would things work? Do I get up on my sixteenth birthday and shout “Woo-hoo!” and head straight for KFC to celebrate? Could I go out in the garden and burn all my PKU booklets and t-shirts? No one helped me, or my incredible parents navigate this important time together. There was no support at all. We were just dropped.
Landing my first job on my 17th birthday; I started working for a well-known pizza company. This was an exciting phase of my life that, not only put real regular money into my pocket, but also introduced me to pizza! That job would also re-unite me with many faces from both secondary school and primary school; faces I hadn’t seen in years.
Within a week or two of working there, I learnt that, as an employee, I got fifty percent off! As I’m sure you can imagine, I soon plucked up the courage to try my very first pizza. I had only recently discovered melted cheese, in the form of cheese on toast and I was already hooked. My cousin Gavin had introduced me to it one Wednesday lunchtime. I had a half-day at college every Wednesday, and I would leave college at midday on my motorbike, and head straight to his house to turf him out of bed. We would then have cheese on toast and a mug of coffee whilst watching ‘Terminator 2’ or other epic nineties movies, before heading out to the garage to dissect our motorbikes for maintenance!
Again, Gavin had introduced me to cow’s milk. I had never had coffee without my Aminogram supplement. My supplement originated as a horrid gritty paste, which over time had been watered down into a gritty, sickly sweet, but yet an extremely bitter flavoured milk; the only thing that was strong enough to take the edge off that rancid flavour, at least enough for me to be able to take it without gagging, was coffee.
I’d never tried a real coffee before! I was surprised by its smoothness. It was sweet but not sickly sweet, and so creamy. I had no idea how to take ‘real coffee’ so I just took it the same way Gavin took his coffee, white with two sugars. I guess this kick-started my journey off PKU, as gradually, I dropped my supplement in favour of real coffee.
Remembering that first cheese on toast still makes me smile! It just blew my mind completely; the cheese I tried was Red Leicester (I loved that orange colour; it still attracts my attention in the cheese aisle now!) with Branston pickle on top. I remember my cousin dipping a large knife into the jar; this was to cover the knife with the pickle, whilst avoiding the crunchy lumps. I adopted this same tactic myself, until I discovered ‘sandwich’ pickle. I’d had enough of hard crunchy food! I just wanted to focus on the texture of that soft melted cheese!
It had been a busy Friday night delivering pizzas. Every time I returned to the shop, turning the corner on my moped, the smell of pizza in the air made my stomach spin with excitement. Needless to say, it didn’t take me long to give in to the attraction of that inviting aroma. I decided to get myself that ‘fifty percent off pizza’ in the form of a Garlic Pizza Bread, using some of my generous tips from that evening. Opening the box, I took in the view before me and then tucked right in. I remember thinking ‘Oh my goodness! What have I been missing all these years?!’
My next step was to progress to the all-famous Hawaiian pizza; my first ever real pizza! I was always conscious that it was high in protein before even adding having meat on it, hence my choice, with just a bit of ham and then pineapple, which was protein-free (in my head I was still taking everything step by step). Any odd mistakes or undelivered pizzas were often given to the crew members on long shifts or overtime, so opportunities soon came along for me to try every variety of pizza available on the menu, slice by slice!
Free pizza was like a dream come true, and my love for this Italian cuisine grew and grew. This led to me frequently purchasing pizzas, as I stepped away from the humble ham and pineapple and replaced it with my new favourite, Pepperoni pizza. During the summer of ’94, I ate enough pizza to sink a battleship. I was living the dream! I had money in my pocket, my own transport, an incredible social circle and my huge appetite for food was being satisfied beyond belief.
They were good times; one of the best summers of my life! However, unbeknown to me during this time (and this I have only discovered whilst writing this blog) the PKU guidelines had already been changed from ‘coming off the diet’ at the age of sixteen to ‘diet for life’. Although the guideline was changed in 1993, I didn’t find out about this until 2005. After getting my first computer connected to the internet at home. I accidentally stumbled across it. I was completely gobsmacked!
This blog has been quite a journey for me. Raising yet again, many more questions and emotions. If any of my blogs have raised any questions for you, please get in touch with me via the links to Facebook, or leave a message here. I can also be contacted by email at truthaboutlifewithpku@gmail.com
I hope to bring a Q&A podcast to accompany this blog soon, to answer some of the questions you’ve put forward.
Truth About Life with PKU 