Month: June 2022

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

Bulking cooking is often brought up by dieticians and other members of the PKU community as a great way to help manage our diet. The idea being that it makes multiple, microwavable low protein meals which saves the need for us to cook every meal from scratch. In theory, bulk cooking sounds great, but for me it has always seemed incredibly overwhelming. The thought of cooking all that food at once, whether there will be enough room in the freezer to store it and what if I cook too much? What if it goes to waste because I get bored of eating the same thing every day? What if I don’t make enough food so hours of cooking results in only 2 days of meals?

Before the most bulk cooking I ever did was when I would make far too much pasta for dinner (why is it so difficult to get a single portion of pasta right?!), so I would stick any leftovers in a Tupperware box in the fridge, hoping there would be enough for my lunch the next day. However, I didn’t really consider that to be bulk cooking, as I knew of people that would cook large PKU cottage pies, big pots of rice and curry or a slab of lasagne, filling their freezer completely full of meals. So, the question was how do I get myself to the next level of bulk cooking and what do I need to do that?

In a spur of the moment trip to B&M, I finally purchased some freezer pots, labels and decided, as I had seen on social media, I would cook a PKU lasagne, as I knew it was a meal that could make quite a few portions. So, I followed my normal recipe, I made a big pot of tomato and vegetable sauce and put it with the sheets to then put in the oven. When I filled my lasagne oven tray (an old bread tray which I never use) I realised that I had made far too much veg and tomato filling. I decided then that I would also cook a batch of spaghetti while the lasagne was in the oven because why not!

While that was all cooking, I went to clear out a drawer in my freezer and after throwing away month old packets of chips and hash browns, I was able to get one clear. When the food was all cooked; I laid out my pots, somewhat messily forked lasagne, and spaghetti into them, let them cool down and then stuck them in the freezer. Putting them in the freezer, I was nervous considering when do I use these frozen meals? Are they something I should save for only ‘rainy’ days when I’m running late, or I feel poorly? Or do I use them every day?

After successfully cooking and freezing my first bulk load of food, I woke up the next day and realised I actually fancied a meal of avocado toast for lunch! However, I did soon discover when the bulk cooked meals would come into play! It was when I woke up on a workday morning a few days later and I couldn’t even begin to think of what I wanted for lunch, never mind have the energy to cook something from scratch. Normally, I would get so overwhelmed with the thought of what to have for lunch, that I would only ever face eating a packet of crisps and a cup soup. It was on those days when the bulk cooked meals would come in handy, not just the obvious times when you slept past your alarm.

That was my first experiment in bulk cooking and even though I had both lasagna and spaghetti; I was surprised how much I preferred the spaghetti – the main reason being simply because it was easier to stir the spaghetti halfway through cooking, ensuring it had cooked all the way through. Whereas the sheets of lasagne prevented me doing that meaning even after 5 minutes in the microwave, it was still cold in the middle.

This was exactly what I needed to help me realise that for bulk cooking, I didn’t have to make big fancy meals, but just bigger versions of what I already knew.

Hello everyone, my name is Clair Willcocks, I am 27 years old and I am Galen Medical Nutrition’s new PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

Since life has pretty much gone back to normal when it comes to travelling, knowing how easy the PKU EASY microtabs have been on days out, I was really excited to put them through their paces when it comes to going away on long weekends, a week’s holiday and flying. With my previous substitutes going away anywhere was less than ideal.

Last year I was lucky enough to fly abroad to Belfast to meet the Galen sales team, and I was been able to go Tunbridge Wells with my mum for a long weekend of retail therapy! As I did in my previous blog, I want to compare my experiences of travelling before with my substitutes vs travelling now with the PKU EASY microtabs.

Long weekends are great fun but I always find them awkward to pack for, as I have to find the right size bag to put a weekends worth of clothes in and a big suitcase is silly just for a few days. However, if I’m on holiday in England I always have to pack for every eventuality of weather, as it doesn’t matter if it’s July or October, we could still get pouring rain or a heatwave! So not only do I pack for the required amount of days but always extra.

Of course, I then have the PKU element of going away – making sure I bring my prescription food incase I get hungry on our days out adventuring, so I have exchange free snacks. Then as well as fitting a weekends worth (and a bit more) of clothes, PKU snacks and treats, I of course have to make room for my supplements too.

When I was on the premade supplements this was always a nightmare as they were so bulky and made my bag so much heavier carrying around all that liquid. Also in the same principle as the clothes, I would always pack extra just in case something went wrong or I got stuck due to travelling issues, so it meant even more weight in my bag.

Another issue was that I was always paranoid one of the drinks would break, getting liquid all over my clothes, so I would keep them in a plastic bag but the fear was always there! When going camping I’d leave my bag of drinks in the car to save room in the tent, but it meant that in the summer the drinks would start getting warm throughout the day, which made them even more horrific to drink!

The powdered substitutes were a lot easier to pack as they were flatter, lighter and were less bulky, however, a weekend away still meant taking over 10 sachets of powder plus extras which would still take up precious room in my weekend bag. I also still had all the inconvenience of having to make it up while out and about, cleaning the shaker out and carrying around bottles of water to use to drink (and wash out the shaker if I was camping).

Going for a week away had all these problems but fivefold, as not only did I have to pack for a whole week’s worth of clothes, snacks and allow room for any souvenirs I may buy; but also a week’s worth of substitutes.

When it comes to flying its always an anxious time while my bag is being scanned through security as I can’t help but think they might start to ask questions about what this suspicious powder or fluid is I have so much of!

As travelling usually takes up the majority of a day, as well as having it in my suitcase, I also needed to have the substitute in my carry-on bag, so I always had my dietician’s letter with me to explain why I needed to take liquid and powder onto the plane. I’m very lucky I haven’t had any drama with airport security yet but I know people that have and it’s something I’m still anxious about every time I fly.

Now with PKU EASY Microtabs

Travelling for days or a week with the PKU EASY microtabs as my substitute is now so much easier. For me, one pot of tabs is two days worth of substitutes so for a small trip away I only need to take one pot and for a week I only need to take three pots. I still take spares just in case something goes wrong but the pots weigh barely anything and take up very little room. It’s what I’ve always wanted for going away, something discreet, light and not bulky to carry!

Airports are still a little nerve-wracking to go through but an interesting effect of having tablets is that people are more likely to take tablets more seriously as a medication rather than a drink pouch or powder. I’ve found this not only at airports, but also out and about at concerts, restaurants or even in the workplace. Even when I am pouring out large amounts of tablets and it can feel like I really stand out, people seem to better understand the concept of taking tablets as medication and just leave me to it. I don’t find myself having to explain what the tablets are actually for, not as much as I had to with my drinks. To be considered a valid form of medication, the tablets are enough.

As said previously, the PKU EASY Microtabs make it so much easier to take my supplement throughout the day as I travel, as all I need to take them is a bottle of water. Sometimes once I’ve got past security I can buy water in any newsagents, or even when I’m on the plane! However, trying to make room while on the plane to make and shake a powdered drink is certainly not so easy. With the premade drink, I’m always wary of the smell that comes with it, if it stays on my breath or if other people in seats near me can smell it, it’s not like I can crack open a window while at several thousand feet in the air!

Day to day usage as explained in my previous blog is just so much easier, as I just carry just one pot in my going ‘out out’ evening bag or in my back pack, with a bottle of water or any fluid. Then it can be taken whenever, wherever; a restaurant, on the beach, at a picnic bench on top of a hill, at the side of a path in the middle of the countryside with no drama or fuss meaning I can truly be in the moment, whether that is at a meal with my family or on an adventure, lost somewhere in the wilderness.

The biggest compliment of the tablets I have, was when I went away with mum for the weekend. She turned to me late in the afternoon and asked if I had my tablets that day (old habits die hard!) which I of course had been taking when we did get a spare moment, such as with a cup of coffee or at a meal, but even my ever-vigilant mum hadn’t even noticed me taking them, because they were just that quick and easy to take!

That’s why I love the PKU EASY Microtabs, they do exactly what our substitutes should do. Our substitutes are something that we have no choice over and they have to be taken every day, multiple times a day for our health, so they shouldn’t have a huge impact in our everyday lives or be a huge fuss because we’ve got better things to be doing like living our lives! They should be as natural and easy to fit into our routines and lives as brushing our teeth or having a morning tea or coffee and the PKU EASY microtabs do just that.