Travelling with Tablets – Days Out

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11 May 2022

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.

One of the best things about the PKU EASY Microtabs has to be how easy they are to take out and about. I did talk about this briefly in my ‘Transfer to the Tablets’ blog but now with last year’s relaxation of the tougher lockdowns, I was finally able to put the tablets through their paces as I went out and about more, even going over overseas to visit Galen in Belfast! Travelling with substitutes was always something that was a real struggle before, so with this blog, I want to provide a direct comparison with what it was like with my previous substitutes compared to what it is like now with my Microtabs!

Days out – Before

Having a big day out is always exciting, but when you have PKU it also makes it a lot more complicated. If I’m going for a day out to London for example, as well as having to organise the train tickets, where I’m going to visit and where I’m going to eat like normal people, I also need to make sure I have my substitutes, double check restaurant menus, and organise what snacks I may need to bring, just in case there is no suitable restaurants around.

On the actual day itself, I would pack my bags with various PKU friendly foods such as prescription biscuits, vegan/gluten free snacks, fruit and crisps etc. I’d also need to pack my substitutes, which before were the GMP powder drinks. I would have had to make sure that I not only have my powder sachets but also my shaker and the water that I would use to make my drink up with. The annoying thing was that shaker always took up so much room in my bag and the water made my bag heavier, meaning I’d always have to carry around a bigger, potentially less practical, comfortable (or even worse, less stylish!) bag. It was the same when I was on the pre-made amino acid drinks, as they were also always so bulky and heavy, I always had to find a bag to fit around them.

I would always try and make sure I’d have my first drink before I left for the day so I had the energy I needed. However, in the rush to try and get everything ready, I would always somehow forget to actually drink my drink. This meant, in those last 10 minutes before I needed to go, I would have to make and force my drink down as quickly as possible; and believe me when I say, trying to drink 500ml of substitute in one hit is a lot of work! If I had just had breakfast it would make me feel so sick because of how filling my substitute was so because of this, the majority of the time I didn’t have breakfast, which of course isn’t ideal just before a big day out!

When I was out and about, and it was time to have my lunchtime drink, I couldn’t really stomach my drink with my lunch as it was so filling – otherwise it would fill me up and spoil my appetite before my meal. If I had it as well as my lunch, I would feel sick from being so full. I also always somehow managed to make a big mess, especially when I didn’t have my shaker or water with me because I didn’t want to carry them around. Instead, I would try to just buy a bottle of water in a shop, empty half of the water into a nearby plant and then pour the powder into the bottle.

However, attempting to get a sachet of powder into a hole the size of a 10p was incredibly messy, no matter how much I tried to open the packet in a funnel like way. Having to make my drink in front of people wasn’t something I was ever really too embarrassed about, as now protein powder drinks you make and shake are now a common thing, but having to do that in the middle of a café still wasn’t really ideal.

Because of how much of a fuss this all used to make (the carrying around of shakers, pouring the powder everywhere, finding enough water to make a decent drink and then finding somewhere to wash out the shaker for next time) I’m going to be honest and admit that on my big days out, I just wouldn’t bother to take my lunchtime drink with me. This of course was less than ideal as for a long day out it would mean that I would get very tired. In addition, if I got home late, I would not have the energy to make my evening drink, as I wanted to just relax or go to bed. So, I wouldn’t have my evening drink either; meaning on a big day out, I potentially would only ever have one drink, my morning one!

Days out – Now I’m on the PKU EASY Microtabs

Getting ready for a day out is now a lot easier, as rather than only giving myself 10 minutes to down 500ml of liquid in one go, with the microtabs, I’ve just been able to just knock back a capful of tablets while trying to get ready and everything packed. As they aren’t liquid, the tablets no longer fill me up as my previous substitute did, which means I have more room and time for a decent breakfast, something which is so important for a big day out or even just for my normal workday.

As I’m packing my bag with all the essentials, I have what I lovingly call my ‘old lady pill bag’ which I keep my PKU EASY Microtabs and the vitamin tablets in. The bag is the same size as a small make up bag and that is all I now need to pack for my substitutes.

I no longer have to carry a 500ml water bottle of water, exclusively to make my drink with. To take the tablets all I really need is a small amount of fluid. This means even if I don’t have water, I can take them with ANY liquid, whether that’s my coffee, Coca Cola or green tea (not that it tastes particularly nice, but it at least gets the job done!) Importantly, if I do want to carry water with me, it can be water that I can drink throughout the day to keep myself hydrated, it’s no longer exclusively for my substitute.

Out and about the best thing about the tablets is that they can be taken whenever I sit down. When I was thinking about this blog, I realised the main time I sit down on a day out is when I’ve stopped for lunch or a snack, so even though you’d think that would be the ideal time to take my substitute as I have the facilities and the space, I couldn’t as my drink just didn’t work with food.

It means I would have to wait for my lunch to go down before I could have it, which would usually be at an inconvenient time. I’d be trying to hunt for a good spot or space to make it, which meant I would be making it on a wobbly park bench or having to buy something just to be able to use the café’s facilities. Now it’s exactly the opposite, I can use my stop for food or a hot drink as time to take my tablets, without it being an issue to my food intake. This also importantly means I’m much more likely to remember to have them, as I think “oh I have stopped at a table, let my get my tablets out!”

One pot of Microtabs lasts just under 2 days for me, so I know I’ll always have enough for the day. I also have different pots for different places (one pot at home, one pot at work, one pot by my bed etc.) which makes them last even longer, so I always know I’ll have my substitute with me. My pill bag is small enough to go in any size bag I need or want to take out, even a tiny evening bag when I go out for drinks!

The Microtabs mean I can now finally work my substitutes around my life, rather than my life around the substitute, whether that’s being able to use a bag that matches my outfit rather than one that’s most practical, being able to be more discreet (and making less mess!) when having my substitutes, being able to eat and drink when I want to and just carrying around less weight. It importantly means I am having my substitutes when I should be, not missing any out or leaving them at home so I am being healthier with my PKU. They really have changed my life so that a fun day out can be just that!

Keep a look out for my next blog which will focus on holidays & flying with my new tablets!


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