PKU & Lockdown

Greetings fellow travellers on the PKU road. My name is Polly and I write about my PKU & other things over at PigPen.Page & on Twitter (@poconnor). The NSPKU have kindly invited me to contribute to this blog on their fantastic new website.

I’m writing this from day eleven of the UK-wide lockdown, though we were already in isolation so it is day 21 at Chez Polly. Yesterday a friend’s kid shouted across the social distancing: “This is mad!”

I had to agree. And when times are mad we all need clear, compassionate communication.

Knowledge is Power

To that end, the NSPKU have done a fantastic job in getting information about PKU and Covid-19 out there. If you haven’t already seen their video and statement, or even if you have and need reassured again, please take a look at them:

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

https://www.nspku.org/nspku-guidance-re-coronavirus-covid-19/

Suzanne’s video has gone global, with a metabolic company in Europe recommending it to PKU patients around the world. The NSPKU advice lines have been busier than normal and the team is working to provide assistance and reassurance to families both online and behind the scenes. The NSPKU have been providing this support since 1973 but, as with many essential services, their role feels more precious now.

Anxiety in a time of Coronavirus

It is normal to feel anxious when things aren’t normal. That is not a fault. We are caught up in something which is huge and difficult to predict. If we focus on everything we don’t know or can’t do then it is easy to feel overwhelmed. And having or caring for someone with PKU can add to our worries and fears.

I understand and am fearful too. Those of us who aren’t essential workers have been getting the hell out of the way of those who are. But the effect of closed schools and offices might leave us feeling there is little we can do. So let’s focus on what we can do. In a world where if feels like we can’t do anything useful, it can really help to think about what we can do.

Look after yourself, mentally and physically

When we face a future of unknowns, it can help to focus on being as healthy as possible. Plus keeping mentally and physically fit can be a worthwhile distraction from the current worries around us.

Exercise

Exercise releases endorphins which give us a natural high. The current lockdown rules allow us one hour outside for exercise and I can’t have been the only one taking advantage of that. Even if you have never been enthused about exercise before, taking that time to have a stroll outside will keep the body ticking over. And how the body feels can have a marked effect on the mind.

This is something I spoke about on my blog last week. I sat down on day eleven of my isolation and set out a few ‘rules’ to help keep me going. The first two tied directly into this exercise time:

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

Stay social

Rule 3 was to be social and call someone outside my household once a day. Usually this was a video call, but I’ve also played boardgames online and attended my regular exercise class from my living room. All the services that I’ve used to do this are linked on the blog above.

Or you can turn to social media for ideas and company. I’ve spent a lot of time reading about what other PKU folks are cooking up for dinner and checking out photos of others having online fancy dress parties. It is inspiring and helps us to feel less alone.

Routine

We might feel lonely or adrift because things are not normal. We all know this, but we try to keep things as normal as possible. A routine can be an anchor in an unpredictable sea. That is as true for a child stuck at home as it is for the adult looking after that child. So we try to carry on, we try to keep doing what we normally would within the limits of this new reality.

But things are not normal. And it is ok to relax that routine a bit. We are all anxious, we are all a bit tender and vulnerable at the moment. As this progresses we will all be affected by the results of this pandemic. We can’t know how and some of us will be more affected than others. However much we worry and refresh our news feeds, there is much that we just don’t know right now. So…

Cut yourself some slack!

This is my Rule Number 4. This blog was supposed to be written earlier in the week. But I was feeling the weight of the world a bit much so disappeared into a detective mystery and then joined friends for an online board game. I gave myself permission to change my planned routine in accordance with Rule Number 4.

It is ok to not be ok. It is ok to tune out from the routine and the world for a few hours or even a day. Just don’t let it go on for too long. And if dragging yourself out of that slump is difficult then find someone to talk to. It might be someone in your isolation bubble, or a friend over in their bubble. Or you might need someone completely objective and turn to a helpline like Mind or the Samaritans

Find a project

This can help to give you a sense of achievement and gives us something to focus on which reduces anxiety levels. It could be something you work through over the next few weeks of the lockdown or a task that only takes a day.

My long term project is to read as many books as I can. The other half is voracious and I’m now about 80 books behind. That is a lot to get through during lockdown, but it gives me something to disappear into at the end of the working day. My shorter project this weekend will be to get the garden (well, pot plants as I’m in a London flat) in tip top shape.

PKU projects

I’ve had a few mini tasks on my PKU list too and have been ticking them off. The first was to cook up a batch of PKU friendly ‘Fish & Chips’ which I came across at the NSPKU conference. Cooking those was a delicious treat after a lockdown day.

Another task was to go through my PKU stocks, checking exactly what I have and how long they might last. That brought out a couple of boxes of lasagne that were hiding at the back need used up soon. If my lasagne attempts are any good they will be added to my blog recipes.

What will you decide to do?

One of the PKU Twitterati decided that lockdown will be the time for her to find a supplement she likes. An excellent plan and you might try to do the same. Or you might decide to sort out a PKU friendly option for a meal you usually struggle with. Or it might be a chance to do a food diary and check that everything in your diet should be there. It is easy to stray and pick up a hidden exchange or two over time.

Or you might decide today is a day to make a list of all the things you want to do tomorrow and then pick up a box set. And that is ok too. Never forget Rule Number 4!

Before I go, could I ask that you add two items to your Lockdown list:

  1. Help out the NSPKU with their NHS Kuvan Consultation

https://www.nspku.org/respond-to-nhs-consultation-for-kuvan-for-pku/

and

  1. Add your voice to the Aspartame impact study

https://bcu.onlinesurveys.ac.uk/25gq6w5yxe-11

I hope this helped, even if it was just a distraction for a moment or two. May you & yours stay safe & well.

Polly

© Pauline O’Connor 2020

 

You can read more blog posts from Polly O’Connor at her blog PigPen.Page