#MyPhlexiblelife - Karen's Story

I remember when I was a toddler being told “no you can’t have this - you’re not allowed”. You slowly start to realise that there’s something different about yourself compared to all the other children; you start to understand that you can’t eat what they’re eating, and by the time you’re between 3 and 5, you kind of know that you’re different. 

My mum used to tell me a wee story about when the ice cream van would come round our park, and I’d be the only child that wouldn’t be getting ice cream. The ice cream man used to feel sorry for me and he would hand me one, but I would just stand there staring at it because I knew I wasn’t allowed. I was only about 4 or 5, but all the other children knew I couldn’t eat certain things as well and were like “Oh, you’re not allowed that!”

I suppose every child is curious about the taste of different foods, and I would have been trying to steal and hide things like cheese around the house, and then sneak around trying to have a nibble and a taste. But my siblings would have found out and seen what was happening and told on me! As a child, eating foods I shouldn’t have would be very dangerous for my brain as it was developing, but I don’t think kids realise how serious it is as you grow up in those early stages. When I went to kids’ parties and things, it was always the parents who were kind of panicked, thinking “What’s going to happen if I give her the wrong food? Will she have a severe reaction?” I used to just have to bring my own foods, and I found that knocked my confidence socially - I used to be afraid of people asking me “Why can’t you eat that? What’s wrong with you?”

From a very young age I was into Gaelic football, and I played for my local clubs and at university - I was still playing socially before COVID started, so I’m really looking forward to getting back to that. But I’ve always just loved watching sports and I would try anything; I really enjoy the confidence boost it gives you. That said, I wasn’t confident enough to properly commit to it at school, because having PKU I naively thought “Gosh, how would you be able to train properly when you can’t eat protein, which is so essential?” I couldn’t see how the protein substitutes would give you enough, and I thought that with PKU I’d never be good enough to be able to commit to training. So I didn’t do PE at school for GCSES; I went down the more scientific route of chemistry and biology and things like that. 

I went to university to study dietetics, which is all about the diet and its effects on health, with a focus on practically applying a scientific understanding of nutrition. After doing that for two and a half years, I left uni because I just wasn’t feeling well and I was putting myself under a lot of pressure. I was struggling a wee bit mentally and going off-diet, and I could see how that was really affecting me. My memory, my concentration and my mood swings were quite bad, and through listening to a few different stories of other people who had been off-diet, I was inspired to regain control of my diet. I went to one or two of Nutricia’s Low Protein Living Weekends which made me think I really need to get back on track, and once I started to work on that and gradually build up to the full low protein diet again, the difference was unbelievable. In my experience, it wasn’t just my memory and concentration that improved, but I felt better in myself and people were noticing a difference in me. Don’t get me wrong - it’s very difficult sometimes to have to stick to the same types of foods and a certain protein level, but the benefits definitely outweigh the restrictions. 

After I left university I went into administration training to have something to keep me going. I did qualifications in business administration and was working in the health service in different admin jobs. My goal from a young age was to be a personal trainer, and I’d never really let myself believe that I could go for that - but while I was doing the administration work I started developing myself as a personal trainer on the side. Over the course of the last year or so, I’ve done my level 2 fitness instructor course and now I’ve finally qualified as a fitness instructor - so I’ve realised that with PKU you can still do whatever you want. There’s no activity you can’t do. I can build muscle, I just didn’t believe when I was younger that with PKU I could do such a thing - but the protein substitutes allow you do that, as part of your recovery. Now I love all sorts of training, but I particularly love doing weight training, and when COVID lifts I want to get the work experience which will allow me to train people in the gym as well. 

I’m at the point where I realise how important it is to keep my diet under control, and for me that involves spreading my protein substitutes over three times a day - particularly as now I’m so into exercise and training, and I’m aware of the importance of having protein substitutes for recovery and follow-on training. I have a far more balanced approach to my diet now, and I find a big part of that is being willing to try new things. The protein substitutes have changed a lot since I was a kid, and I remember my mum telling me that she nearly had to force feed them to me. But over the years, being willing to try new products from the likes of Nutricia has made things much easier. I really enjoy the fact that the protein substitutes are a part of my meals, because I see it as the protein part of my food and really enjoy drinking it - particularly when I’ve found the flavour that suits me. It allows me to ensure I’m getting my water intake for the day as well, because I dilute the protein substitutes quite a bit - so that’s useful in making sure I stay hydrated. It’s important to be able to experiment and try new things, but also to realise that if you go over your allowance you shouldn’t be too harsh on yourself - just start a fresh day and take it from there. 

The reaction of some parents who find out their child has PKU might be something like “Oh gosh, what am I gonna do, this is awful!” But I would just say: look at me. There are so many opportunities now and so much variety in food, and there’s so much support these days - PKU doesn’t stop you living a full life. It doesn’t make you less able or less of a person; you are good enough, and you will be able to achieve what you want to achieve in life. You just have to go for it, and don’t let it put you off trying to do what you want to do. 

Disclaimer: The views/opinions presented are solely those of the individual and do not necessarily represent those of Nutricia.