The Transfer to Tablets! Part 2
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.
So, at the end of my last blog, I was talking about how I finished trialling the PKU EASY Microtabs, that I was really happy with them and that because of this I had finally made the decision to go over to the microtabs permanently. However, as excited as I was, I wasn’t fully ready to transfer over to microtabs 100% just yet. I wanted to be on the 4 caps a day but still keep one GMP drink. Mainly because it was summer, so it meant I was drinking plenty of water but also on a more emotional level; I was really struggling with idea of eventually stopping the drinks, as no matter how much I hated having them, the thought of letting them go was really scary as they had been with me all my life!
During this period of having both the GMP drink and the microtabs, what really surprised me was that it made me realise how filling my drinks actually were because of the amount water I was drinking. It made me think back to when I was younger, when I would complain to my mum that I was hungry, but she would always come back to me saying, “well, have you had your drink yet? Remember, your drink is food too!” As much as I hated her saying that (because of course, all I wanted was another packet of crisps), it turns out she was right; my drinks were food because of just how much they filled me up! All through my life, to counteract how filling they were, I have had to work my substitutes around all of my meals.
Unfortunately, over the last 10 years because I have been in such a bad place with my substitutes, it meant I had turned taking them into such a long-drawn-out emotional procedure, but I realise now, as well as not getting my incredibly vital substitute the other issue was that because I couldn’t eat until I had my substitute, this resulted me not eating at all! On my worst days, I would end up sitting there getting more and more upset from not only being hungry but also from not having my substitute, until finally I would explode, resulting in either a big fall out with whoever I was with or have a huge binge eat. On the other side of that, if I did eat but I didn’t have my substitute, my food would never quite fill me up, so either way I would always be hungry and always upset. Transferring to the PKUEasy microtabs, I wondered whether they would fill me up in the same way.
Well, the short answer is that they simply wouldn’t! However, for me, I realised this meant that I could finally work the substitutes around my life, rather than then my life around the substitutes. As they didn’t fill me up, it meant I could have my microtabs whenever I wanted, before or after meals, first thing in the morning or last thing at night. Either way for the first time in my life, my substitute finally didn’t make me feel sick or full. Furthermore, because they take barely any time to have, it meant I was finally free to have my substitute when it suited my actual life and work routine. When I fully understood this, I finally made the decision to go fully over to the PKUEasy Microtabs.
Well as I’m sure you can imagine, when I did get the call from the pharmacy saying my full months’ prescription of the microtabs was ready to pick up, I was practically skipping to and from the pharmacy. I was so excited, coming home with tablets in hand, knowing how much difference these tablets were going to make to my life! When I got home, I then had my final GMP drink that afternoon and to give it a proper send it, I live streamed the whole thing. It was an emotional goodbye but definitely a happy one.
So, you may be thinking ‘does this mean, with tablets in hand, it is now a ride off until the sunset, happily ever after moment for Clair?’ Well, not quite yet! Of course, like everything, the novelty of having something new does soon wear out and you find you’ve got to use the new exciting thing in everyday normal life…. We’ll explore this further next time!