A day in the life of a working mother with PKU
By Claire Briggs
As a child, I just got on with it, knew no different and trusted my mother wholeheartedly to provide for me and ensure I got what I needed. Now, as a mum to my two boys and as an adult striving to keep myself and my boys and husband healthy and well fed, I can see the huge impact my mum has had on my own life. She literally saved me.
You see, the survival of a PKUer wholly depends on the luck of the draw – by this I simply mean the roulette of life – what kind of family you are born into. I was lucky to be born into a family where they had time, love and understanding.
For those people who are born into families who struggle with any of these attributes, life for a PKUer can turn out very differently. Imagine if my mum just found it too hard (I wouldn’t blame her – weighing every morsel of the limited food I was able to tolerate, even the baby vomit to calculate how much protein I had actually digested!). Imagine if my mum had not got the patience, commitment and sense of self sacrifice for her child that mum had. Imagine if my mum had struggled financially and had to work long hours as well as care for 2 PKUers (and a non PKUer in the middle!). My mum was in the luckier position that she didn’t have to work so she chose to give up her career as an interior designer for the Ulster Museum for the sole purpose of committing her much needed time to baking and caring for her two PKUers. In those days there was far less prescribable foods and today’s availability and range of vegan and suitable veg food is incomparable to the meagre amount available in the 1980’s.
So in short, my mum is my saviour and without her I would be been incarcerated in an institution a long, long time ago. Instead, I am a Headteacher of a lovely little school and I have had the joy of learning and studying, finding love and getting married, been blessed with two gorgeous boys and found immense pleasure in motherhood.
Life as an adult with PKU is by no means straightforward. My mum continues to be my rock but of course I have had to make my own way in life. I live in Scotland now and mum is in Northern Ireland. My main struggle in life is balance, as well as occasional bouts of anxiety and self doubt and difficulty with decision making. I find it hard to strike it right as my priority, as with most mothers, is my children. I come down the pecking order in terms of self-care which I know is wrong but it is hard when I find myself feeling that self-sacrifice and love that my own mother gave me as I bring up my boys. They come first. I have days when I am feeling fantastic that I have managed to cook an awesome meal that everyone loves and I can sit in on it with my own similar version PKU style! However, more often than not, I find myself cooking up the most delectable meal for my husband and boys and I sit down to another bowl of PKU pasta with frozen veg and gravy. My easy go-to meal when I haven’t had the time or the energy to cook up an inspired, healthy meal for me after cooking for the rest of the clan! I long for exciting, flavoursome meals.
In an ideal world I would simply batch cook! Of course! However, life is not always that easy and time is a huge issue for me. I work 5 days and am trying to run a school while teaching the pupils full time. It is a challenge probably beyond the energy and capabilities of a PKUer but I thrive on it and love my job. My work life is another part of life that often comes before my own health. I read about other PKU folk who have realised that they need to balance their life and have come to understand that due to the restraints of our diets and the impact it has on our lifestyles, we should listen to our bodies and take a little more time for rest. I agree wholeheartedly. But life as a nearly 40 year old with 2 kids and a full time job isn’t really allowing for that rest!
My Daily Routine
Well, it starts with waking up. I get up at 6.30 (or hit the snooze button and get up at 6.45am) each working day. I usually munch two slices of PKU Juvela bread with butter and marmite. The bread itself is dry and polystyrene like but with plenty of butter I enjoy it! I love my Glytactin 15 chocolate flavoured supplement and once I have had it I am set up for the day. It is really filling and I like the taste – much gentler and smoother than other supplements I have tried. The first time I had it I couldn’t believe how filling it was. I remember saying to my husband, ‘This must be the way it feels after you eat a steak! I am so full!’ I took it at lunch that day and in the evening I could hardly eat dinner I was still so full!
After breakfast and getting the boys ready for school, I leave the house about 7.30/7.45 and drop them at their breakfast club. I am really lucky that neither of my boys have PKU. I head to school and am usually there by 8.15am.
School starts at 8.30 and throughout the day I am on my feet constantly and have a to-do list that only seems to grow! At break time I take my second Glytactin of the day (the kids thought it was chocolate milk for the first few months I worked there and I had to explain that it was medicine! They thought I was drinking two cartons of chocolate milk in school everyday!) I teach P1 right through to Senior 2 (14 year olds) and there are only 30 kids in the school which sounds bliss but it brings it’s own challenges as the diversity and range of levels and abilities I teach from hour to hour means that I am constantly having to be ‘on the ball’ and flexible to all their needs.
I have a very savoury tooth and so I struggle to eat a lot of fruit. My major downfall is crisps so for break I usually eat a bag of crisps and a banana. I am allowed 15 grams of protein a day and while I must admit I do not always count them, on a working day, I am not usually that far off. I used the LowPro app to record my exchanges and my supplements and have found it useful in tracking how I am doing.
For lunch, I usually just have my Glytactin. Sometimes I have a tin of soup but I do find my Glytactin and a banana do the trick. I have to have lunch in the classroom with the kids and as I have little time out of class I tend to work through lunch on admin etc. I need to get better and more imaginative with my lunch. Sometimes if I have made enough dinner the night before I might bring it in and reheat it which is a rare treat!
I leave school at 3pm most days with the exception of a Thursday when I stay late (and bring an extra Glytactin!). When I get home I am usually ravenous so make some PKU toast and have some crisps or olives. I have recently discovered the Free From cheeses which have no protein and have been a God-send as I used to eat a little regular cheese from time which will have affected my levels.
My dinner, as I have already mentioned, is the part I struggle with – once I have cooked for the family I have little energy left to cook for me. My usuals are PKU pasta, veg and gravy or perhaps a stuffed mushroom, potatoes and veg. I eat a lot of veg. I don’t have a sweet tooth so never have pudding. I take my last Glytactin of the day after dinner.
I enjoy cups of tea after work and in the evening and use Coffee Mate as milk which is free. Coconut milk is also a favourite of mine for the rare occasion that I have a coffee.
Glytactin has really changed my life. Prior to Glytactin, I took a different supplement which was hard on my stomach and didn’t taste great at all. I rarely took it and felt the worse for it. I now take my Glytactin religiously 4 times a day and look for it if I don’t! My body tells me when I need it and it is like clockwork! I have a lot more energy these days and I am able to stay up later in the evenings. I sleep really well and my mental outlook on life is more positive when I am taking my supplement. I have found social media to be a huge support to me and PKU forums are great for recipe ideas and also just seeing that others are going through similar trials as me.
The weekends are definitely more challenging for me. I find I am out of routine and although I still take my supplement 4 times a day it can be a little irregular and I find my diet is less controlled. Eating out is difficult at times but I tend to ask for veg, potatoes and gravy and most places provide – although with varying levels of satisfaction! I find Italian restaurants to be the best. I can ask for my veg, chips and gravy or I can bring my PKU pasta and they happily oblige to create a Pomodoro pasta or the like for me. It is marginally easier now that veganism is fashionable. I had a great Portobello mushroom burger with vegan cheese and in a gluten free bun the other day. I always explain to the waiting staff that I am on a ‘strict medical diet’ and that usually does the trick. Sometimes they want more info but I don’t tell them anymore or I am likely to get a lettuce leaf on a plate! The whole ‘allergic to protein’ thing puts the fear of God into them!
Aspirations for the future and being grateful…
So, life in the day of a PKU is challenging but a way of life that I have had to adapt to more as an adult than a child, when my mum bore the brunt of the challenge! Day to day, I manage but I am aware of the need to do better. I am aware of my need to be fitter, get more exercise (umm..not sure when!) and to eat healthier as I am only getting older! I have many frustrations, from cooking to walking around the food shop and realising I can eat about 2% of the foods available! However, I feel mightily blessed and lucky to be healthy, to have had an education and have thrived in many things.
I managed best on my diet when I was pregnant and had to do it for the sake of my unborn child (it is funny how you do it for your child but not just for you!) and feel very grateful for my children every single day. PKU is a pain but managing it has made me count my blessings in life and appreciate my mum beyond anything in life! So to all you mothers and fathers to PKU babies and children out there: keep going – I know it is tough but keep going. You are literally changing the future for your children and when they grow up they will appreciate and love you all the more for it.
We would like to thanks Claire Briggs, for writing this very candid blog post for us, demonstrating the importance of family support and care. Claire is thriving in her career and is a devoted mother and daughter, that refuses to let PKU hold her back. She manages her PKU in a healthy way, whilst getting the most out of life and her family. If Claire can do it, so can you.
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