PKU in a time of Covid

This is a worrying time so I will start by highlighting the NSPKU Video on Coronavirus and the statement on their website. These both contain important advice for anyone with PKU or for those who care for someone with PKU. If you haven’t seen them, please take a look:

NSPKU video on Coronavirus / Covid-19

https://twitter.com/NSPKU/status/1241050317074161664

NSPKU statement on Coronavirus / Covid-19

http://www.nspku.org/news/story/coronavirus-covid-19-

Now more than ever people with PKU will be needing each other for tips on how to use unfamiliar foods or for help with the strain of maintaining a specialised diet. It is also a good time to establish or strengthen your PKU support network. This support network was one of the key outcomes of a panel discussion given at NSPKU 2020 back in February. You can read more about the conference and that discussion here.

Everything just feels a bit rough at the moment and there is plenty to worry about in the news. Here in London, the last few days have felt:

• part ’28 Days Later’ as the busy work and tourist areas have emptied of all but bemused pigeons,
• part Survival Prep hub, as stores have filled with people and emptied of goods, and
• Part stoic ‘Keep Calm and Carry On’ as usually aloof neighbours now smile as we pass each other 2m apart on quiet suburban pavements.

Physical Distancing vs Social Distancing

The term ‘Social distancing’ has been trending everywhere in the last few weeks. Most people have heard of it, fewer people are doing it. It refers the need to reduce the chances of infection by limiting the number of times we interact with people or with surfaces that might have the virus. This will help to reduce the time it takes for this virus to circulate round the population, and give the NHS a better chance of caring for those affected.

I have no problem with the science behind this term. It is sensible advice for anyone with an infection and is as true for the new coronavirus as it is for the more familiar common colds and flus. However, I really dislike the name. It implies the need to cut oneself off from the world. It rings with connotations of loneliness and abandonment.

There have been calls for the name to change to ‘Physical Distancing’ which I prefer. The aim of reducing transmission of infections involves reducing physical contact so the name is more accurate. But it looks like the need to change our lifestyles to radically reduce the infection rate will last for weeks, or even months. Humans are social animals, we will need to maintain our social contacts which may become more important now than ever. That is why I will be trying to use the term Physical Distancing wherever I can (well, wherever I remember too!)

Reducing Physical contact.

On the 12th of March, the UK government released the advice that anyone with a persistent cough or a fever should self-isolate for 14 days. I was with a friend for 12 hours that day who developed a cough that afternoon. None of us have been officially ordered to self-isolate, mostly because it is impossible to get a test. However, my husband and I have chosen to act as though we have been exposed to the virus, though I know there are those who have chosen to act otherwise.

So I post this missive from day eleven of drastically reducing our physical contact with other people. The two of us have spent this time in a small London flat which has three rooms: one bedroom, one bathroom and a kitchen/living area. When he takes a video conference call for work, my desk is in the background so there is no escape. Yes, it has taken some adjustment and is a matter of finding a balance between minimising any risk to others and minimising the risk to ourselves.

The sudden change of lifestyle has meant getting some rules in place. I know from past experience that my mental health suffers without fresh air and exercise. My first two rules have been reflected this:

1. Get outside once a day
2. Get exercise once a day

We have a small courtyard and is has been possible to sit out there, in ski gear, and work in the sun for a while. Exercise has proven a little more difficult. Obviously the gym and other exercise classes are not an option. But it has been possible to get a decent walk around the quiet backstreets of suburbia while maintaining a 2m distance from everyone (and wearing gloves). So every day I’ve gone out for a quick march around the deserted back streets. On Friday I managed my first run in seven months, it wasn’t pretty but it happened.

This has helped to set structure in the day, and give us both a little time away from each other. As awareness of the need for physical distancing has spread it has been easier to walk or run while keeping away from others, but again not everyone is doing it.

You can still be social

My third rule ties directly into my discomfort over the term ‘Social Distancing.’ I have friends and family members who live alone and are faced with the prospect of spending weeks on their own. They will be working from home so will be getting emails and phone calls, but that isn’t friendly contact. Which brings me to the next rule:

3.  Video call someone once a day.

This has proven fairly easy given the wide range of services out there. I have used

• Skype to speak to a friend under “Shelter at Home” orders in California,
• FaceTime to speak to parents who are hunkering down in NZ,
• Discord to share a virtual Friday night beer with London friends now that the pubs have been ordered to close and
• Roll20 to play an online board game with folks scattered around the South East.

Friends have used Zoom to link up seven households for a game of Trivial Persuit, one camera was dedicated to the board. If you haven’t used these services before, most of them are free and easy to use. Seeing a friendly face can make a big difference to a phone call.

Or chose not to be social

This post was supposed to go up yesterday, but I realised in the morning that I was just fed up with anything and everything. Day 10 of self isolation proved to be a day of truly shutting the world out. Phone off, internet ignored and books read. I really needed it as ten days of being cooped up had mixed with general anxiety about the state of the pandemic to leave me feeling wrung out.

Handily, this brought another rule.

4. Cut yourself some slack!

If it is all a bit much, then give yourself some time to stop and ignore stuff. This could be a morning or a full day, ideally a day when you aren’t having to work. Or maybe you turn work and the phone off at 5 and ignore the world for an evening. If ever there was a time to look after your mental health, and that of those around you, this is it. Remember, sometimes it is ok to not be ok and just take a break.

I have no doubt more rules will come along as the weeks stretch out. I’m thinking about setting myself a project - perhaps now is the time to remember how to play my unloved musical instrument in the corner? I will be trying out more recipes and hope to get them up here. In the meantime, I look forward to seeing you all and hearing your tips on Twitter.

Stay safe, and remember that if you need help just ask. The NSPKU and PKU twitter folks are there for you.