Category Archives: Uncategorized
WWYD - Telling others about PKU
I don’t think that there can ever be any one right answer to this question…. What do you tell other people about PKU?
I think there are a few reasons why there is no one answer.
- every PKUer is different and handles their self-image differently. Some people may be comfortable telling everything about PKU to anyone that asks, while some might never want to tell anyone anything…
How being off diet (PKU) changed my life… and I don’t mean for the better
After reading a lot about people choosing to be off diet because they don’t like it or resent it recently I have decided to share my story about how being off diet changed my life. I apologise in advance if I waffle or go off track in places, but this is an emotive topic for me and I know this is going to be exceedingly difficult for me (on an emotional level) to write. I’m sorry if any of this upsets or worries you, but I am telling it how it is. I feel when it comes to things like this full and sometimes brutal honesty is important.
I want to preface this by saying that there are some people out there who don’t seem to be affected by being off diet. They are lucky and from what I can tell through my interactions with other PKUers across the world, those people are few and far between (and much envied). I would like to point out that I am on diet and have been since January 2010. I feel much better on diet – less mood swings, no anxiety and far less depression, better mental clarify, continually improving memory and only the normal busy mum type of exhaustion. The only real negative is that I have a LOT of trouble losing weight on diet but this isn’t – and never will be – a good enough reason for me to go off diet ever again.
Alright, so here goes. A word of warning – this is going to be very long. Very. So you might want to go and make yourself a cuppa before you start.
Growing up I was always very strict on the diet and apart from the odd blip my levels were always good. My parents were always told
Kate was always strict on her diet during childhood. Despite feeling constantly sick from her formula she still managed to lead a very active life
diet for life as far as I know and I never really questioned it until late in my teen years. With that said, I do think that some of the issues I had with the diet began early in my childhood. This all centred around formula. As a child up to the age of 13 or 14 the only formula available to me was Aminogran. Now I hear that this is still available though I can’t imagine anyone being happy to take it unless it has improved immeasurably! As far as I’m concerned, this stuff was the foulest thing known to mankind. One of my earliest memories is that of my parents holding me down on the floor, holding my nose and pouring my formula down their throat. They had to be cruel to be kind and now as a mother myself I can’t imagine how hard that must have been for them. Once I got a bit older the only way I could get Aminogran down was to mix it into a paste and spoon it into my mouth. Ugh. My mouth is watering and I feel sick just thinking about it. The moment it made contact with my saliva it would start to expand and I would have to hold my mouth closed with a handful of tissues then wash it down with lemonade as quickly as I could. I took it morning and night and would spend the next 8 hours or so feeling nauseous, bloated and lethargic. Sometimes I would throw it up. I think this is the reason for my huge phobia of being sick. Living like this was very difficult. I led a very active childhood and sometimes it was hard to function at school, let alone play netball, swim or ride horses when you were feeling like puking.
When I was in my early teens we were told that other formula options were now available. This came in the form of Maxamum XP and it was a huge improvement on the A-word but I think that by this point, psychologically, the damage was done. I had a HUGE aversion to formula – any formula. After a while on Maxamum and finding the large volume difficult to deal with I started finding ways to ditch it without my parents knowing that I wasn’t taking it. I poured it down the sink, gave it to the dog (who liked it and incidentally lived to a very ripe old age… I always wondered if the formula had something to do with that lol), watered the plants with it. Anything to not have to drink some or all of it. Through all of this though, I never cheated on my food.
It wasn’t until Kate had finished high school (this photo was taken shortly after she graduated) that she started to struggle with the diet
It wasn’t until I finished high school that I started to cheat on the diet. Through the last two years of high school I was mercilessly bullied about my PKU by a very nasty boy and his gang of cronies. For the most part I ignored it as best I could, though I realise now that it got to me on a deeper level far more than I realised at the time. I was relieved when high school finished and went off on Schoolies Week. Schoolies is an Australian tradition – rite of passage even – for school leavers, and is basically a week long holiday ofpartying, usually at the beach. I went away with one close friend and a bunch of people I didn’t know too well, two of whom were vegetarians. I thought this would make things easier for me and was optimistic about coping with my diet on holiday (especially as I had already successfully managed my diet during a three week long school trip to Japan a year and a half earlier). I couldn’t have been more wrong. I had several run ins with one particular girl (one of the vegetarians I thought might be a bit more understanding, no less) over her eating all the food I had purchased for myself. I had little available to me to eat and I had to make my meagre funds stretch for several weeks as I was moving on from the Gold Coast to a friend’s house in Brisbane (8 hours south of my home town) to continue my holiday afterwards. Three days in to our week-long stay she loudly accused me of making up PKU to gain attention. I argued with her, insisting that PKU was very real, but was completely devastated when not one other person, including the girl who had been my best childhood friend, stood up for me. I spent the rest of the holiday alone avoiding the others aside from when we went to the beach parties at night. Instead I spent my time alone on the beach, taking surfing lessons, window shopping and reading. Looking back at that incident is hard. I never acknowledged at the time just how much it really upset me and when two months later I received a Christmas card from the same girl, declaring she had told her mother about me and had been made to send me a card to apologise, I pretended it didn’t hurt and threw the card in the bin without a backward glance. Now that I think about it though, I wasn’t just hurt. I was feeling ostracised. Different. Ashamed. Yes, I was ashamed of who I was because I had PKU and that made me different. I have never acknowledged any of this before. Not until today, right now, sitting here typing my story. I feel a bit like I want to cry, yet I feel strangely relieved also.
Anyway, after this I started cheating on my diet. I started picking at things I couldn’t eat and completely stopped taking my formula. At first I didn’t feel the effects. I’m sure my parents probably noticed a difference but I felt fine. I started university – a double degree in professional communication (journalism) and languages (Japanese language and culture) and excelled. I averaged high distinctions and was top or close to the top of my year group in every subject in the communications degree. However, my increasing denial of the diet was starting to get to me. I had started eating tofu on quite a regular basis as it was in my favourite dish from the on campus Chinese takeaway. My concentration started to suffer and I experienced the first hint of memory issues. I struggled with my courses in Japanese. This was partly because it was an immersion course, meaning no English was spoken at all, and I felt like I was out of my depth. The second reason was my issue with concentration and memory. I didn’t link it to PKU at the time and blamed everything else instead. I had no idea what my levels were – I had started refusing to go to clinic or have blood tests – so it was easy to deny that my levels were high and it was impacting my life.
Six months into my degree I was offered a full cadetship by the editor of the local newspaper. I accepted it and this was where the real trouble with my diet started. At first I would get baked potatoes with cheese for lunch. You know how they say that marijuana is a gateway drug? Well, for me cheese was a gateway food. My new cheese habit progressed to stopping at McDonald’s when I was out on a job. I would go in, buy a cheeseburger or a sausage or bacon and egg McMuffin and take it back to the car and sit in the car park stuffing it down as fast as I could. I knew I shouldn’t be eating this stuff and I was terrified of being seen. It was my dirty little secret that was getting way, way out of hand. I would then drive back to the news room with all the windows down to get the food smell out of the car. Then the guilt would set in. Inevitably I would end up wanting to throw up everything I had eaten. It was almost like an eating disorder. Maybe it even was in a way. I never did make myself throw up my high protein binges, but I came close to it. Many times. I have no shadow of doubt that I would have if I wasn’t so afraid of throwing up. Instead, I let the guilt consume me and would get depressed.
During this time I used food as a coping mechanism as well. Journalism isn’t the easiest of professions. You see a lot of tragedy. Sure, I lived the high life sometimes – partying, junkets (free holidays offered to the media to generate positive publicity), rubbing shoulders and sometimes even partying with the famous. The flipside of that highlife is this: horror car smashes, gruesome murder scenes, seeing dead bodies dragged out of rivers, being carried away from the scene of the crime or lying on the road where they were thrown from a motorbike or through the windscreen of a car. Sieges. Once I was even held hostage by a man threatening to kill himself. Hearing screams of indescribable agony, anguish and grief. Doing ‘death knocks’. Living by the words ‘if it bleeds, it leads’.
While any normal person would find this stuff disturbing, my constant high levels were doing me damage and I lost my ability to cope. If my levels were where they should have been I’m sure that while all of these things would still have no doubt left their mark on me as a person, I would have been able to cope better. Alongside all this I experienced three years of bullying at the hands of two horrible bosses. I completely lost my mental clarity and was unable to stand up for myself or even reason with people. One day I crumbled. I got up from my desk, walked out and I never went back. I’m sure at this point I had some kind of break down and the first of many incidents of panic attacks, terrible anxiety and depression.
I was 20 years old and I had it all. My own home, a car, holidays, a great lifestyle. And a career I had just chucked down the toilet because I was in such denial of how my levels were affecting me.
Over the next few years more bad decisions with food led to bad decisions in love and money. I had a string of bad relationships, a string of failed jobs in communications and PR, and I lost pretty much everything I had worked so hard for. I developed a pattern with jobs. I would get my levels down a bit, get a job and do brilliantly for a bit. Then the effects of high levels would kick back in and I would start screwing up. Big time. Then either my contract would not be renewed (technically I was never fired because I didn’t take on permanent jobs) or I would realise I was probably going to lose my job and quit before I was fired. Rinse and repeat. I could talk the talk but I couldn’t do the walk. Not that I would acknowledge that. As far as I was concerned they (meaning those I worked for) were jerks and my high levels, exhaustion, depression, inability to communicate effectively on both a social and professional level and terrible, terrible memory had nothing to do it. And I was in total denial that when my levels improved, albeit very temporarily, these symptoms started to ease considerably.
Eventually I somehow managed to get a high powered, highly paid PR job. I managed a small staff and PR programs across four countries. Only, I went back off diet after only two weeks in the job. And after a while I was screwing up. Big time. The long term high levels were affecting me, and badly. I would have whole conversations with people and then a week later have no recollection of any conversation taking place at all, let alone the content of those conversations. I would attend meetings and not be able to understand what was going on, let alone decipher my notes from those meetings. Sometimes I wouldn’t remember the meetings – crucially important meetings – at all. I was badly depressed and spent my weekends at home, in bed with the curtains closed. Sleeping or crying, usually. I am amazed my now husband stayed with me. I must have been so hard to cope with when I was like that. In fact, my being off diet almost split us up on many occasions.
Long story short, my contracted was terminated early. I managed to get myself a lower graded job for a lot, lot less money. And I stuffed that up too, so I quit. That was the last career focussed job I had. Not long after that we moved back to Australia from England. I used leaving England as a reason for quitting. When we we got to Australia I couldn’t get a job. No-one would have me. I did a couple of bits of temping but only managed to get a regular, ongoing job when I decided to get back on diet properly. I had been trying hard at the diet but falling off the wagon a lot since we got back, but I wanted to have a baby so I went on the preconception diet and kept my levels under 300. Within weeks I had gotten a job. It was only as a barista in a children’s play centre, but it was better than nothing. I had been accepted to university too and I started a teaching degree in the same month I started the job. I did very well too. I fell pregnant in May 2010 and sadly I lost my job when I announced my pregnancy (but I did win an unfair dismissal case). My daughter was born premature and small but healthy in December 2010 and I vowed to stay on diet. I have fallen down since – a lot – then but I always get back up and I will never stop trying. I still can’t get a job though. That is one of the major after effects of screwing up my life by screwing up my diet for so long.
I’m 28 years old, almost 29, and I have no career because I ignored my PKU and I messed up badly. it’s in the past – years in the past – but my family suffers because of this and despite wanting to expand our family we cannot afford to have another child because I can’t get a decent paying full time job. The only job I have been able to get was 8 hours a week in retail. I need to go back to decent paying full time work for financial reasons but nowhere will have me, even in the most basic admin role. All I can do is keep trying, and I will.
PKU is a part of who we are but it is not WHO we are. We are so much more than our condition. PKU does not define us. We define it. The diet is part of our life and even though it can be tough, life is a whole lot easier if we just embrace it and get on with it and take the good with the bad. This is a lesson I wish I had learned a long, long time ago. Something I would like to add… I had very frequent attempts to get back on diet, and in fact, until very recently I never acknowledged I was off diet at all. I was always buying formula and low protein foods, I could just never make myself stick to it all. I wish I had.
If you have gotten all the way to the end of this, then thank you for reading. This turned into quite an essay!
Please feel free to ask anything you like. This has been very difficult to write (emotionally) but I am glad I have done it.
Focussing on health and fitness
I haven’t done much with this blog after I said I was full of good intentions, so I thought I’d better get back on here and update you all on what I have been up to.
Unfortunately, no-one seemed to be too keen on doing guest posts for the blog so that idea – which was the basis for my revamp – went out the window.
Instead I have been focussing on my health and fitness and learning all I can fitness, exercise and weight loss in general and how PKU affects these things (and vice versa). It’s an interesting journey and even though I’ve got a long, long way to go it’s prompting me to think a lot about what I would like to do with my life in the future and further study in these fields is certainly a possibility.
I have been documenting all of this on my Tumblr blog, Kate Losing Weight. The blog itself isn’t PKU specific although there are constant references to PKU and when I learn something about the relationship between PKU and fitness/weight loss I post about it.
In favour of losing my weight and getting fit I have, for the most part at least, stopped using almost all low pro products and instead I am striving to see food as fuel and to fuel my body with fresh, whole foods. i’m not finding it easy but it is working (oh-so-slowly!). That means I have no recipes to blog but if i do I promise I will post 
PKU, weight loss, exercise and phe levels
I have just written and posted an article on my Tumblr about PKU and weight loss which includes some tips on low GI foods that are low in phe and discusses what, when it comes to exercise, can put your levels up and how you can help to avoid it happening. I have been working on my weight loss goals very hard lately and I am learning a lot!
Vegan Alfredo – a delicious low protein pasta dish
Let me just start by saying that this recipe creates a meal that, if you like avocado
, is heaven in a bowl. Yes, it really is that good. In fact, this is my new favourite. Avocado isn’t phe free, but, here in the UK at least, it’s not terribly high either. While avocado is higher in fat than some fruits, it’s rich in antioxidants and good oils, so it’s very nutritious.
I found this recipe on the Glow Kitchen Blog.
Ingredients (1-2 servings)
- 1 large avocado
- Juice of half a lemon
- 1/2 tsp salt
- 1/4 tsp pepper
- Small handful of fresh basil
- 1/4 cup some kind of low pro milk: almond milk, rice milk, Sno Pro etc (or water) to thin it out
Instructions
Simply combine all the ingredients in a food processor and blend until smooth. Mix through a serve of
your favourite low protein pasta, cooked according to the packet directions.
PKU/Low protein Mediterranean Style Rice Bake
Okay, now I freely admit that I haven’t actually tried this but it sounds awesome! If you try this before I get to have a crack at it please post a reply and let me know how it was.
3 cups cooked low pro rice OR brown rice if your phe intake allows
1 cup small artichoke hearts, quartered
1 cup asparagus pieces about 1″ long, blanched
½ cup sun-dried tomatoes in oil, with oil
¼ cup diced roasted red pepper
170g low pro cheese (preferably a kind that melts)
2 tablespoons red wine vinegar
3 tablespoons extra virgin olive oil
2 tablespoons fresh parsley, minced
1 teaspoon salt
½ teaspoon black pepper
Preheat oven to 190º C. In a large mixing bowl, combine rice, artichokes, asparagus pieces, sun-dried tomatoes and roasted red pepper. Stir to combine. Cut off 117g of the low pro cheese (if block – you can also use grated) and break into ½”-sized pieces and add to the bowl. Add red wine vinegar, olive oil, parsley, salt and pepper and toss to combine.
Spread rice mixture into a casserole dish. Dot the top with remaining low protein cheese. Bake for 25-30 minutes or until heated through and the cheese begins to brown lightly.
Remove from oven. Serve warm.
Makes 6-8 servings.
Low pro crustless spinach quiche recipe
Hi everyone,
I just wanted to make a quick post to share this delicious sounding recipe with you. Mara Alexander, whose husband Kevin has PKU, shared a recipe for low phe crustless spinach quiche on her website. In addition to being low protein, the recipe is also gluten free, egg free and casein free.
It looks and sounds absolutely delicious, I plan on giving it a try this week! Go to the recipe by clicking here.
With all the best intentions…
Back in December I had all the best intentions of firing the blog up again and then, as usual, life got in the way. A couple of days after my last post, Miss E ended up in hospital for the better part of a week with a form of cellulitis that she somehow got around her eye and was only discharged on Christmas eve. Add to that the fact that my parents were over from Australia visiting, Christmas, additional work hours for Christmas/Boxing Day/New Year sales and planning Miss E’s Christening and… well, I’m sure you get the picture.
Life has calmed down a little (but quite frankly, not a whole lot) now so hopefully I can come good on my promise of doing more with this site. Just before Christmas I approached a few people asking them to do guest blogs, however the response wasn’t all that positive so I will be going to try again soon.
In the meantime, here is an update on what is happening with my life and my PKU. The new year has brought with it further intentions of weight loss and dietary compliance and I have been working hard to stick to my New Year’s resolutions. Just before Christmas I joined Weight Watchers thinking it would help me, but truth be told I have still struggled to balance the WW diet with a low protein one. I tried not counting my Lophlex in my WW as I have heard of other PKUers who have had success with weight loss through WW this way, but it didn’t work for me. I have been getting back to the gym though despite my best intentions my efforts have been a little sporadic (and a huge apology on that note to my gym buddy, Mrs Z). For the last five weeks I’ve been battling with terrible shoulder pain and I found out today that, previously having being effectively dismissed by two different doctors, I have a fractured collarbone. Now that I know what’s going on and what not to do I will be becoming more of a regular at the gym again though I can’t do any resistance training, pilates, yoga, body pump or swimming – all the stuff that will help me increase my muscle mass, basically!
In terms of diet, well… I admit, I’ve been a little up and down. Over Christmas and New Year with everything that went on I had a pretty big blow out on phe and I struggled to get back on track. I had a clinic visit last week and my exchanges have been dropped down a bit and I am now getting into a good rhythm of eating as I should. Thankfully, formula has not been a problem for me to get down ever since I was pregnant and had to take six doses a day, so I didn’t have to contend with that side of things. Since coming up with a great meal plan over the last week with the help of a couple of fabulous PKU friends (you know who you are – thank you!) I have lost 2lbs and I am feeling more awake and generally better. I have been eating hot oats for breakfast with a few prunes and maybe some fresh fruit after if I’m still hungry, soup for lunches with salad or crackers and dinner has been stirfry, steamed veg, a small amount of brown rice and something sweet potato related. It seems to be doing the job. It’s the first week since I’ve been doing WW that I have lost more than 0.2kg. I also lost a total of 6.5cm from various parts of my body and during the week I did a spin class and walked 10km one day while pushing Miss E in her buggy. So yeah – nothing amazing on the exercise. I will be interested to see if I have lost again when I weigh myself in another week or if I gain it back like I have been doing. I’m still waiting on a level from my clinic visit last Friday and I’ll be doing another one on Monday to see how the drop in exchanges has changed things.
Other than all that, doing mummy-daughter things with Miss E (who is generally a cheeky little delight!), working at the shop and being busy with work for the Metabolic Disease Foundation (but that’s another post!), nothing much else is going on. I feel like I’ve got plenty to keep busy with though
So that’s pretty much everything here for now. If you have any suggestions for a guest blogger I would love to hear from you!
Take care until next time
Kate x
Planning a new and improved Living with PKU… I’m back!
Hi everyone
After a long hiatus from blogging I’ve finally decided that it’s time to revive things and get it all moving again.
I hope you’ve all been well over the last… well… many months (!) since I’ve been gone and certainly a lot has happened in my life.
Perhaps most notably (for the purposes of this blog at least) has been my ongoing struggle with my diet since having my daughter, who is now a big 1 year old! With motherhood has come a whole new set of challenges with the diet and I freely admit to the fact that I have found it much harder to maintain my levels than I thought I would.
Anyway, enough on that.
The point is, I’m back. I’m thinking the blog will take a bit of a different direction to it’s previous format of almost 100% recipes. Don’t worry, I’ll still be posting recipes, but if I’m honest I no longer get a lot of time to get into the kitchen and experiment. Hopefully that will change as Miss E continues to grow up and become more independent. However, I intend to invite guest bloggers to join us, cover events and try out other new things too. A URL change might also be in there… we’ll see!
Please bear with me while I figure out what feels right for the new and improved Living with PKU
