Living with Pku? Its okay - me too!

Hey I'm Chloe, I'm 20 and I have PKU! I'm currently at uni in my third year studying English. Hopefully you'll find my blog useful if you're also living with PKU! Take a look...

[chloel97]

So today I've just started up a fresh blog, with the same idea as this one! I've created it on blogspot as I thought it would be much more accessible to people and it will hopefully help to raise more of an awareness of PKU. Please head over to thepkulife.blogspot.co.uk and have a little read. It's a working progress at the moment, but I'm really excited for what I have planned 😊

[chloel97]

So today I tried out this new formula from Cambrooke ( a new American company) and honestly it's the first time I can actually say a supplement tasted nice! I'm going to be honest I was a little doubtful about trying it because I've never been able to tolerate anything but the orange flavoured Cooler - I've been on that same supplement for over 10 years now - and I'd just gotten used to taking it. I was told that this formula would be completely different to any other I'd had before as it wouldn't taste like a protein substitute and it wouldn't have an off-putting smell. Again, I was very doubtful that both of these things would be true... However, I discovered that I was wrong! It's the first formula I've tried that I didn't have to just tolerate, but I could actually enjoy drinking. It has a sort of sweet taste to it which I found made it very pleasant to drink. The only downside for me is that this is a powder you have to mix with water, so it's not as quick and convenient to take on the go as the Cooler is. But I'm certainly willing to deal with this one small problem if it means having something a little more drinkable! I only had this one packet that my doctor gave me to trial, but I've been told that there are a range of other flavours available too. I think it's time for me to finally leave the Cooler behind 😀👍🏻

[chloel97]

Cooked a vegetable stir fry tonight! This is one of my new favourites because it's so quick and easy to do! I used a range of vegetables; potatoes, carrots, broccoli, red pepper and a little bit of onion. But you can use whatever you like of course, depending on your daily protein allowance. I also used a pack of Super noodles, which work out at about 5 exchanges for half of the packet. So it's a fairly low protein meal, but perhaps something a little different for you guys to try! 😊

[chloel97]

Tonight’s meal - because I’m feeling rather lazy (it’s Saturday night so I’m not feeling that bad about not cooking!😉)

Even though I’m basically off diet now and I have the option of eating meat, I still very much prefer to stick with veggie foods, just because I haven’t really gotten used to the taste of some meats yet…

This is one of my favourites 😊

[chloel97]

On a more serious note...

Something has been bugging me for a long time now and I felt the need to rant about it on here because why not?! And more importantly I feel that it may also concern some of you guys too…

So since I turned 19, and I’m now definitely being classed as an adult (even if I don’t really feel like one yet!), I have discovered that I must pay for my prescriptions. This came as a bit of a surprise to me as I’m still in education and so I assumed that the rule was if you were you would not have to worry about this yet. However, I was wrong. I have been told that I must now pay for all of my low- protein foods that I order on prescription, as well as the lancets that I need in order to do my bloods.

Now, at the time when I first discovered this, I was actually still on my diet. A typical prescription order for me would’ve included; several boxes of pasta, a few tubes of the ducal powder, several packets of the Fate all- purpose mix (to make my bread with), a box of spaghetti and a batch of the Pro- zeros. Obviously I would also have several boxes of my supplement on top of this. As I wasn’t following a completely strict diet at the time, I didn’t need tonnes and tonnes of low- protein food, which was a good thing I guess. But it still would have been rather costly! A box of low- protein pasta on prescription would cost around £8, which I think is an extremely unfair amount considering a packet of regular pasta in a supermarket costs just under £1.

I was aware that I could have just paid for a yearly prescription if I’d liked, which would’ve meant I could’ve ordered as much as I liked for the year for a certain amount of money. But I decided that personally it would’ve not been worth it, as I would only need to order foods every few months or so; in the long run I probably wouldn’t have gotten my money’s worth.

Considering all of this, it was at this point that I decided to move away from my diet (although not completely, as I would still need my supplements), and begin eating ‘normal foods’. I began to include usual bread, milk and pasta in my diet rather than the low- protein ones. However, I understand that I’m extremely lucky enough that I was able to do this. I am aware that probably for many of you guys this wouldn’t be an option at all. If you follow a strict diet, then you will depend daily on most, if not all of the low- protein foods on prescription. This is where it angers me most. We obviously didn’t choose to have PKU, we were born with it. And so what are we supposed to do about this? Perhaps paying for a yearly prescription will be worthwhile for many of you, which is great news, but there is still the principle of this that frustrates me. In my opinion people such as us, with PKU, shouldn’t have to pay for any of their foods, as they are important dietary requirements not things that we would choose to eat if we had the choice.

I think a while back, the last time I attended the annual PKU conference around 2014, I heard something about the need to make low- protein foods available in supermarkets. Although there is the question of which would be cheaper – buying on prescription or in the supermarket? But I do honestly think this is such a wonderful idea and I hope in the future this is something that can happen. Many people are not even aware of PKU, but it’s something that should be known of. And so I think this would also contribute to raising awareness of our condition.

Anyway that’s my rant over with for now, let me know what your thoughts are on this subject...

[chloel97]

Hey I'm back!

Apologies for my extremely long and mysterious absence! Life just sort of got in the way I guess. Now that I’m halfway through my second year of uni things are starting to get real serious - and scary! I’m already starting work on my third year dissertation and beginning to think about career possibilities, so there’s a lot of stress…But hey it’s cool! As well as all of this happening, I am currently trying to work on something pretty big. It’s going to be a very long piece of written work, just basically detailing everything I’ve gone through to do with my diet, right from being a tiny little baby up to where I am now (almost 20!!). It’ll be like a timeline of my life I guess! In the piece I’ll be focusing on all of the struggles I’ve had in the past to do with school, fitting in with friends, travelling abroad and moving away to university. But not just the negatives, also a lot of the positives -  I’ve come a long way, many things concerning my diet have changed and for the better! The aim is to reassure you guys that, yeah we might have PKU, but it’s honestly not that bad and you can still live a relatively normal life with it! :)

Just a quick update on where I am at the moment in terms of my diet…I am currently not really on the diet. I’m not actually counting my exchanges, and I’m eating many ‘normal’ foods, although I still take my supplement twice a day. I am keeping track of my levels each month with my bloods though, and my doctor and dietician have been very satisfied with the results so far, so all is good!

It was quite a scary thing to come away from what I’ve been used to for so many years of my life, and at first I was apprehensive. But now I am used to it and I am reassuring myself by taking regular bloods, it has made my life so much better!

But anyway, I’ll definitely be writing more about this subject in the piece I’m working on, which is definitely on it’s way I promise! 😅

[chloel97]

Nice and simple meal for me tonight. Jacket potato with beans and cheese. This is a good one for me as it was easy for me to use up my remaining exchanges with (these days it tends to be a struggle!). But of course, you can add whatever you like as a filler depending on your protein allowance...

[chloel97]

Apologies for my long absence guys...I got preoccupied with uni work and other things... Anyway last night I tried something a little different. I was originally just going to have a plate of vegetables but then my flat mate gave me a cool idea! She said why don't you make a sort of stir fry dish with noodles; I thought it would be interesting to try out so I did. Although, instead of noodles I used low profin spaghetti, mixed with carrots, a little potato and broccoli. Of course you can add whatever you like in there though! Cook the vegetables and spaghetti separately and then throw it all together in a frying pan with a little bit of sweet chilli sauce to give it some flavour. I thought it was great! And plus it didn't use that many of my exchanges, only the potato and broccoli were counted for 😊

[chloel97]

Major throwback to about 12 years ago when I used to live my life by these books…wasn’t even aware they still existed until now! Anyone else remember these or still use them now?

[hannahedwards92x]

Are you going to the conference in March ?

[chloel97]

Unfortunately I don't think I will be going to the conference next year Hannah :( I would love to, as I've always really enjoyed them. But I just can't afford it this time round...

[chloel97]

Major throwback to about 12 years ago when I used to live my life by these books...wasn't even aware they still existed until now! Anyone else remember these or still use them now?

[chloel97]

This is the first yoghurt I've managed to discover that is only 3 exchanges! Even less than the tiny fromage frais yoghurts that are 4 exchanges each (which you can get about 3 small spoonfuls out of!) Plus they're really yummy!

[chloel97]

I'm having a similar meal tonight to yesterday's, except I decided to mix the quorn fajitas with some Loprofin pasta instead...perhaps another good meal idea for you guys to consider?😀

[chloel97]

Tonight I had quorn fajita strips fried together with red pepper and onion, I also decided to mix a bit of pasta sauce in there too (that was mainly because it needed using up though!). I also had a small portion of chips to make the meal a little more filling...and it was delicious! I had half the pack of the fajita strips, which was roughly 10 exchanges. I realise this may be a little high for some of you, but here's an idea...why not split the pack again and go for a quarter of a portion for about 5 exchanges? It's something different to add to your regular meal routines anyway :)

[chloel97]

Cooked vegetables yesterday evening for myself- very yummy and very healthy too!

[chloel97]

Student support...

I apologise for not posting an update in a while guys, but something I've been meaning to write about for a few weeks that I've found useful here at uni is the Student Wellbeing Centre. It's a little building based on my campus which is basically there just to support students in anyway possible, whether that be with financial problems or the stress of uni work etc. Anyway, I went for a meeting with these people just to discuss my diet and what exactly it entails. They were kind enough to offer me advice on a few different support systems they have in place, although I said at the moment I was managing fine; personally my diet doesn't really effect how I work. But it was certainly reassuring to know that if I ever did need help that they're always there for me. So if any of you guys are thinking about university in the future but are worried about your PKU or whatever, do not fear for there are always people around to support you if you need it😊

[chloel97]

I tried this for the first time tonight and it was really tasty😊 I’m going to be honest, I had to improvise slightly with food tonight as I didn’t have enough exchanges left to eat what I had originally planned. So I had a portion of Mevalia’s Anellini, which actually tastes just like pasta (40g is half an exchange, but it’s on the packet anyway). I mixed it with some tinned chopped tomatoes and cheese. Simple enough to make; I’ll definitely be using this meal sometime in the near future.

[chloel97]

I have a cupboard dedicated to me in my communal kitchen (as we all agreed on that) which is where I store most of my food. Other than that, I use my mini fridge in my room 😊

[chloel97]

I tried this for the first time tonight and it was really tasty😊 I'm going to be honest, I had to improvise slightly with food tonight as I didn't have enough exchanges left to eat what I had originally planned. So I had a portion of Mevalia's Anellini, which actually tastes just like pasta (40g is half an exchange, but it's on the packet anyway). I mixed it with some tinned chopped tomatoes and cheese. Simple enough to make; I'll definitely be using this meal sometime in the near future.