November Q & A!
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| Photo by Nick Morrison on Unsplash |
A couple of weeks ago I posted on my social media asking you guys for any questions you had relating to childhood or young adult experiences with PKU, anything to do with school, university or what it's like transitioning into adult clinic, etc. This little idea was inspired by the work I did with Metabolic Support's NextGen group at their conference last month. After working with some of the young children and adults from the IMD community, I felt motivated to try and do more to help the younger generation. At 22 I've been through, what I felt to be some of the toughest years, my teens. I've made the transition from child to adult clinic and I've experienced university. I know that I would've appreciated some guidance or just someone to talk to as I was growing up, which is why I'm offering this help out now.
I promised that I would respond to your questions in my next blog post and so here it is!
"What did your parents do to help you manage your PKU better as you were growing up?"
This question got me thinking back and made me realise just how grateful I am to have such a loving and considerate family!
My parents would always try their best to evenly divide my exchanges (protein allowance) up throughout the day. If there was a special occasion, such as a friend's birthday party, they would make sure to account for this and leave me enough exchanges so that I could have a treat.
They also never ate food around me that I couldn't have and in turn taught my younger brother to do the same.
They dedicated a lot of time to baking goodies for me! Some of my favourites were my Nanna's jam tarts, my Mum's vegetable pie (you can find the recipe here: https://thepkulife.blogspot.com/2018/11/how-to-make-vegetable-pie-with-fates.html) and my Stepdad's savoury pancakes using Fate's All- Purpose mix which I loved to have with roast dinners.
"How to make a routine?"
When I was growing up, we always kept a little chalk board in our kitchen which I got into the habit of writing down my exchanges on each day. I'm not even sure how this began, but I guess it's something that my parents taught me. It helped me to accurately keep track of everything I ate in a day, ensuring I didn't go over (or under) my allowance!
Back in the day when I used to take four supplements per day, I had set times that I would have these - one with breakfast, one with lunch, another mid- afternoon (3-4 pm) and one at dinner time. I was always quite good at remembering to take my supplements, once you initially create a routine it becomes easier to stick to it. But if you are quite a forgetful person I would suggest setting reminders on your phone. These days it's much easier for me to manage as I only take two supplements, one with breakfast and one with dinner.
"How to calm a baby when taking bloods?"
As I'm yet to experience parenting, I had to ask my Mum about this one!
This is always going to be a difficult situation, but it can be made slightly easier by rubbing the baby's heal (or wherever you take the blood from) beforehand just to get the blood flowing and warm up the area of skin - this way the blood tends to come out a bit easier, hopefully making it a quicker process.
"How early in your life did you learn to make food yourself?"
Honestly, I was a very well looked after child and my parents did all of my cooking for me for a long time. I understood how my exchanges worked and how to calculate how much protein was in something from a fairly young age, but actually cooking my food I didn't begin to learn until I was around seventeen years old! At this point I began to learn bits ready for my move to university. However, looking back this seems terrible and it's certainly not the advice I'd give out now. I'd say the earlier you begin to learn the better!
"How can I deal with travel? My supplements normally hold me back from many events."
I always say this, but you should never let PKU hold you back from anything! When I travelled to Cornwall for a month this summer, I arranged to have my supplements delivered to my accommodation. Admittedly, I was nervous about this but it worked out perfectly and saved me a lot of hassle. It would not have been ideal carting all of my supplement along with my other stuff on a seven hour train journey.
I have also heard there are possibilities to arrange supplement delivery abroad - this is something I have never done, but it is always worth asking your doctor or dietitian about.
You may also want to reconsider which supplement you are on, especially if you tend to do a lot of travelling. I take Cambrooke's Bettermilk which is ideal for travelling - they are packaged in very thin sachets of powder, all you need then is your shaker and water (which you can access from pretty much anywhere). I've done a lot of travelling this year, but I couldn't imagine taking my old supplement (the Cooler) with me. They come in much larger pouches of liquid, taking up more room in your bag, have the possibility of bursting and ideally need to be kept refrigerated. It just depends which supplement is best suited to your lifestyle, everyone is going to be different.
That concludes the Q & A - I would like to say thank you so much to all those who sent me a question! This was really fun to do and has hopefully provided you all with some helpful advice. I would love to do more of these in the future, so do let me know if you have any questions!
"How to make a routine?"
When I was growing up, we always kept a little chalk board in our kitchen which I got into the habit of writing down my exchanges on each day. I'm not even sure how this began, but I guess it's something that my parents taught me. It helped me to accurately keep track of everything I ate in a day, ensuring I didn't go over (or under) my allowance!
Back in the day when I used to take four supplements per day, I had set times that I would have these - one with breakfast, one with lunch, another mid- afternoon (3-4 pm) and one at dinner time. I was always quite good at remembering to take my supplements, once you initially create a routine it becomes easier to stick to it. But if you are quite a forgetful person I would suggest setting reminders on your phone. These days it's much easier for me to manage as I only take two supplements, one with breakfast and one with dinner.
"How to calm a baby when taking bloods?"
As I'm yet to experience parenting, I had to ask my Mum about this one!
This is always going to be a difficult situation, but it can be made slightly easier by rubbing the baby's heal (or wherever you take the blood from) beforehand just to get the blood flowing and warm up the area of skin - this way the blood tends to come out a bit easier, hopefully making it a quicker process.
"How early in your life did you learn to make food yourself?"
Honestly, I was a very well looked after child and my parents did all of my cooking for me for a long time. I understood how my exchanges worked and how to calculate how much protein was in something from a fairly young age, but actually cooking my food I didn't begin to learn until I was around seventeen years old! At this point I began to learn bits ready for my move to university. However, looking back this seems terrible and it's certainly not the advice I'd give out now. I'd say the earlier you begin to learn the better!
"How can I deal with travel? My supplements normally hold me back from many events."
I always say this, but you should never let PKU hold you back from anything! When I travelled to Cornwall for a month this summer, I arranged to have my supplements delivered to my accommodation. Admittedly, I was nervous about this but it worked out perfectly and saved me a lot of hassle. It would not have been ideal carting all of my supplement along with my other stuff on a seven hour train journey.
I have also heard there are possibilities to arrange supplement delivery abroad - this is something I have never done, but it is always worth asking your doctor or dietitian about.
You may also want to reconsider which supplement you are on, especially if you tend to do a lot of travelling. I take Cambrooke's Bettermilk which is ideal for travelling - they are packaged in very thin sachets of powder, all you need then is your shaker and water (which you can access from pretty much anywhere). I've done a lot of travelling this year, but I couldn't imagine taking my old supplement (the Cooler) with me. They come in much larger pouches of liquid, taking up more room in your bag, have the possibility of bursting and ideally need to be kept refrigerated. It just depends which supplement is best suited to your lifestyle, everyone is going to be different.
That concludes the Q & A - I would like to say thank you so much to all those who sent me a question! This was really fun to do and has hopefully provided you all with some helpful advice. I would love to do more of these in the future, so do let me know if you have any questions!
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