PKU and Motivation –The Act
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.
I’ve been doing my plan throughout the month and it’s amazing when you are reviewing your life week by week, how quickly a month actually goes! It’s been an interesting experience and I’ve found that I’ve not had to make huge changes to my life, just lots of little ones.
I’ll go down my list that I made in the original blog and give updates as to how I’m getting on with each one.
1. Exercise - I’ve been really enjoying my exercise classes; I can feel I’m getting stronger with every class I go to and even when I was isolating (as I got hit by the pingdemic!) I still was able to keep myself busy, with doing jobs around the house, and doing push ups. As well as this, my local swimming pool has re-opened so I’m hoping to start swimming once the holidays are finished, so therefore should be a bit quieter.
2. Bulk cooking – I’m proud to say I’ve been able to do two batches of bulk cooking, I’ve been doing it on a Sunday, and it’s been surprisingly easy! I started by purchasing some freezer pots from B&M Bargains and some chalk wipe off labels from Amazon. This means I can then write on the boxes what is in them and what date I made the batch, so I know what to eat first! I cleared out a whole drawer in my freezer to allow room for my bulk cooking boxes but I was surprised to find that 8 boxes didn’t take up as much room as I thought. I found the best option was just to cook larger portions of my low protein meals I already knew.
3. Food diary - I’ve been getting better at filling it in and so I don’t focus on the emotional side of counting exchanges, I just fill in the diary when I have had exchanges, but I’ve not been counting the total amount used at the end of the day. Instead, I count my totals at the end of the week and assess from there. I want to carry on doing that and then start being strict again. My biggest enemy when it comes to my food diary is having a takeaway, as I don’t know how much I’ve eaten because I don’t weigh it.
4. Mental Health – I have been journaling at the end of each day, writing in detail how I feel my day went, what positive things I’ve focused my energy on and what negative things I could have avoided focusing on. I have also been doing my PKU journal at the end of the week. I make sure to ask myself questions about how I found my week before focusing on my PKU, I say what I have done well in my diet in the week (e.g., bulk cooking!) and what I didn’t do well the week (e.g., had a takeaway!). I use this motivation plan to focus what I want to do better with my PKU, so I make a note of what exercise I’ve done, how bulk cooking went etc.
5. Giving myself a break – Looking through my notes for the month, I think this is what I have struggled with the most and I think it’s because I’ve not really defined it as it should be. In my previous blog I said this was about focusing on things outside of my PKU so I’m going to call this goal not ‘Giving myself a break’ but instead I’ll call it ‘Focusing on myself’ which in my head sounds a bit cringey but I think part of giving myself a break is not focusing on my PKU but for once, just focusing on myself and what I have done. So far, I have been writing in my journal answers to questions about myself outside of PKU. I ask myself what music I discovered that week, what my favourite outfit I wore was, what friends I connected, to name but a few, so I can remember that I’ve had a great week as myself, Clair, as well as a person with PKU.
6. Treating myself - Okay, this one hasn’t quite worked out as I planned, I’ve had far too many takeaways, but my husband and I are trying to save for a holiday and having a look at what we spend in the month and we both agreed as well as not being healthy, takeaways are costing us far too much! However, what I have found online is a great vegan food supermarket and I’ve been purchasing fizzy drinks that have natural sweeteners in them which you can’t buy in the normal shops. I’ve been keeping them in the fridge, and it’s been a perfect treat. Having treats available like this seems to stop me craving other far less healthy things!
7. Open up more – This is another one I’ve struggled with and I think a lot of people with PKU may also struggle with. As PKU is a part of our everyday lives, it can be hard to open up about it as you don’t want to be a bother to friends and family as it feels like there is always something we are struggling with on a daily basis, whether it’s ordering prescriptions, weighing food, accidently eating something we shouldn’t of or struggling to find PKU alternatives. I think we have a great attitude of resilience, so we can handle anything that comes our way, but the downside to this is it comes with the risk that we don’t open up or let others help us as much as we could.
I’ve recently made a friend, who funnily enough is on a vegan diet but is trying to have more high protein foods! We’ve got quite close recently and we’ve both been really excited to talk about our food and compare diets. The connection I’ve had with them has reminded me that it’s important I open up to friends, so I don’t feel alone. I’m really going to try and reach out more this next month, when I am struggling, or I need someone to talk to.
So that is how I’ve done so far, it’s been an interesting month of reflection and changes and many of them have been very positive, however I will be interested to see what happens, as the novelty of this may start wearing off, it will be interesting to see what I keep, what I fall out of routine of doing and what I may improve upon even further!
Date of preparation: November 2021