Working from home with PKU

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s 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.

The world has changed a lot since the Covid-19 lockdown back in 2020, and as much as it was an incredibly scary and strange time, there were also some positive changes that came out of it. One of the main ones being how we work and commute. So many jobs have been reimagined so we can work from the comfort and safety of our own home.

For a lot of companies and professions working from home isn’t an option – for example mechanics, doctors, builders etc. However, for a lot of industries, working from home not only makes sense for the employees, but also the employers. They no longer have to spend money renting out huge office areas or be limited to only recruiting from in their local area – they can now recruit both countrywide and even potentially worldwide. The changes have had significant benefits for employees as well. They no longer need to commute to work, saving thousands of pounds on commuting costs (which is also good for the planet!) and in turn, have a lot more flexibility for a home/work life balance.

My home set up!

When the lockdown originally began, I didn’t work from home myself. I was put on furlough until August when I went back into the office, but I noticed that working from home was being taken more seriously in the job market. In 2022 when my job was no longer really working for me and I was applying for other jobs, it was my friend who suggested the option of remote roles where I could work from home, so I applied, was successful in finding a new job and have been in that role for over a year now!

Working from home is definitely a personal preference, some people like the commute, the change of scenery from the house and they do enjoy the social side of an office or working space. For me, I really have enjoyed working at home, having my own space, not having to commute, and not having to worry about other people distracting me.

There are also many benefits to remote working from a PKU point of view, and I would really encourage others with PKU to explore these roles if you’re looking for a new job or work within a role or industry where you could potentially change.

Of course, it’s not an option that is open to everyone, but I wanted to share the benefits and the negatives of what I have found so far with PKU and working from home.

Benefits to Working From Home

There are no temptations.

At every workplace I have had, there’s always been either a café or vending machine to tempt me into buying a quick treat, or even on the way to work, it’s just so easy for me to pop into a newsagent’s and grab myself a bag of crisps, or a chocolate bar. It certainly is much easier than trying to cook pasta first thing in the morning or have a cooked meal, where you have to wait your turn for the microwave at lunchtime. Unfortunately, once I started opting for the quick treat, this is a hard habit to shake.

I discovered when I was trying to keep track of my exchanges that a bag of crisps may be 1.5exc or a chocolate bar 1exc and t’s shocking how quickly those 1-2exc snacks start adding up.

Being at home, I am in total control of what I keep in my kitchen and in my snack tin. I make sure to never have any snacks more than ½ an exchange so that if I do snack, it’s not impacting my diet. If I really am desperate to go to the shop to get something I shouldn’t, it means I actually have to force myself to go outside, when I could stay cosy inside.

I can have my substitutes at any time without an explanation needed.

What I have really enjoyed about working from home, especially in a brand-new job, is that because I’m by myself I can have my substitutes at a time that suits me. I can set loud alarms to remind me to have them without disturbing other people and I don’t have the nightmare of leaving my substitutes at home, praying I have spares in my desk. Importantly, I also don’t have to go through the usual barrage of questions, which as fun as it can be to answer and raise awareness, sometimes I just want my PKU life and my work life to be separate. It can be really tiring having to explain every time you get a new job what the substitutes you are having are, which of course then leads to questions about your diet, food and your general health.

I can eat food at any time I need it.

I can have any snacks at my desk, again without questions of why am I just eating a box of plain crackers, why I’m only eating fruit, or what’s in my sandwich. As well as that, with my PKU diet I find the best thing for me is eating little and often. Working from home means I can just get up, go downstairs, and grab food from the fridge whenever I need it, without having to make up an excuse like making a tea round for other people. I can just go eat food!

I can have better home cooked meals, there’s no more sharing a microwave or forgetting your lunch at home.

This is a big one, as going into a job on a daily basis, I would try to have a nice big low protein meal but it can be so tiring to find time in the morning to cook a big meal or prepare a salad, as well as getting ready and leaving enough time to commute. Even if you do all that, you could still annoyingly leave your lunch at home, meaning you either have to spend money on snacks that have exchanges or go hungry the rest of the day.

Once you get to work and the lunch bell has tolled, there’s nothing worse than finding there’s a huge queue for the microwave when you only have half an hour to cook and eat your lunch. Now as well as snacking through the day, I tend to have my big lunch at the end of my day (at 3pm) where I can make a pot of pasta, prepare a completely fresh salad (nothing worse than a warm soggy salad!!) or stick one of my bulk meals in a microwave and watch tv while it cooks. This way, I can now take my time to eat my meal, rather than trying to scoff it down in only 15 minutes.

The dreaded tea rounds.

If I was trying to be good on my diet, I knew the first thing I’d have to kick from it was normal cow milk in my tea and coffee, as a splash here and there does add up. The number of times I’d have to explain to confused colleagues that my milk was in a small carton, or I just wanted hot water for my herbal tea or black coffee with sugar and yet, despite this, there would always be one person who just couldn’t get it. What I found annoying (being annoyed at this is very selfish, I know!) was having to do a whole tea round for everyone in the office when all I wanted was just some hot water for my herbal tea bag. Again, now I’m at home I can have whatever variation of tea, herbal tea, coffee with PKU milk that I want and not only that, but I can also have them all in my favourite big mugs with no need to worry they’ll be used, stolen, or broken!

More freedom and time to experiment with the diet in general.

Like being able to make fresh meals, the time saved in commuting means I also have the energy to experiment with my meals, meal planning, prepping or organising myself around my PKU diet in general. For example, I have my fridge food diary and can fill it up as and when I eat, or I can put a slow cooker on all day making a bulk cook curry, knowing I’ll be in the house.

Negatives of Working from Home

Of course, it would be dishonest of me to say there’s no downsides to working from home, so here are a few I’ve found so far.

The social side of being in a workplace.

As much as it sucks having to explain over and over again your condition and why you eat weird food and have weird drinks or tablets, occasionally I would find people in a workplace that don’t just see you as some weirdo or ignore you. Many people can be really supportive and want to ensure that I was okay. They’d ask if I needed any help with my PKU and remind me to take my drinks or microtabs. I do miss that face-to-face element of support that can be lost working from home.

I think if I went straight from school to a work from home job, I would have missed out on the confidence that explaining my diet and answering those weird questions gave me. Now that I’m confident in myself and on my diet, I do just want to be left alone. It is a catch 22 of enjoying being by myself but there are elements of the social workspace I do miss as well. Generally the fun you have with people in a workspace, for every person who can be a wind up and annoying/rude, there are also people who are just wonderful to be around.

Forgetting to eat as much because you’re NOT packing a lunch box.

Even though I’ve said how useful it is being able to eat at home, it does also take discipline to make sure you are eating properly. The number of times I have genuinely forgotten what I’ve got to eat in my cupboards is silly; like if I have fruit in the fridge or what snacks I have in my snack tin. With a lunch box it does have the benefit of gathering everything together in one place so I can make sure I am eating everything, and nothing goes to waste. Knowing I can just go downstairs and open a cupboard does sometimes make me lazy. I’ve tried a few variations of putting a lunch box together or putting notes in the fridge to remind me what I have in there but it’s something I didn’t think would be an issue when I started working from home.

With no commuting there’s less exercising and getting out of the house.

This has been a big one for me. I am fortunate to live in a small town with a number of industrial parks and so the majority of jobs I have had, have never been more than a half an hour walk/15-minute bike ride away. This meant I would be walking for over an hour every day. Working from home means I don’t do that anymore. In the winter it’s a blessing not having to walk in blistering cold or pouring down rain but it’s very easy to forget I’ve not been outside in over a week or done any exercise. I now have to make sure I do my best to prioritise exercising and walks, whether it’s for my physical health or just my mental health of getting outside of the house every now and then.

Conclusion

Working from home is not for everyone. It may be that your job simply isn’t suitable, or it may be that the downsides such as the non-social aspect are too much for some people. However, I’ve personally found, when it comes to the PKU element of my life working from home has made my life a lot easier.

I’m glad I’ve done it now at the later point of my PKU experience. I think when I entered the world of work, it was good to have that face-to-face interaction, to know what support a workplace can give you and what support you need to ask for. It also can be fun to raise awareness with other colleagues and I know I’ve had some great discussions and opened people’s eyes to life with PKU. Nevertheless, constantly raising awareness and being an advocate can get tiring, especially when at the end of the day you’re just trying to do a job so you can pay your bills.

I personally have really enjoyed being in my own space, where I can look after my health, without having to explain to anyone what I’m doing and have the energy and ability to experiment with ideas. Whether that’s setting myself alarms knowing I’m not disturbing others or being able to work with my own routine and appetite.

More and more workplaces are now offering remote working and are being flexible to allow their employees to work from home. I believe that having the option to work safely in your own space is a really positive one for those with conditions and it’s definitely a change that has been for the better whether it’s improving work life balance or even just employees being able to save money in commuting. Working from home may not be for everyone but it’s definitely something I think should be available for anyone.