By Nicki Hayes

29th June 2020

Categorised in Good To Know

Here at FamilyCarersNet, we know the wealth of knowledge that family carers have acquired thanks to their personal experiences of caring. In this post, Nicki Hayes shares how strategies learnt whilst an unpaid family carer are serving her through the pandemic and asks: ‘What strategies have you learnt that could help others now?’

Anyone else getting up in the morning and looking at their phone, diary or calendar just to clarify what day of the week it is? As an experienced family carer, you may not be. After all, lockdown for many of our community is, in some ways, ‘business as usual’. I know that I, for one, smiled when I read Shereen’s words in her Guardian article last week.  Am I alone in this?

Every day has been more or less the same for years – being carers has prepared me and my brother for lockdown.
– Shereen

I think there’s a lot to be said about this observation from Shereen. The point that many people are missing though, and something that here at FamilyCarersNet we’re keen to – forgive me for the use of this word – ‘alert’ the wider world to, is the fact that unpaid carers know shit. By ‘shit’, I mean ‘useful stuff’ of course.

During my time caring for a teenage daughter with CFS/ME, for example, my daily mantra became ‘control the controllables’. I’m now watching too many of my friends recovering from what seems pretty clear to be Covid-19, although they’ve not been tested. I’m seeing post viral fatigue symptoms. And I am thinking – “Goddam it – you need to focus on controlling the controllables.”

I’m not the only one thinking this by the way. The ME Association is being very proactive in sharing advice to previously healthy people who have had (or probably had) coronavirus infection and are struggling to return to their previous levels of health and energy. 

It’s not just unpaid carers who can benefit from controlling the controllables. We all can…

‘Controlling the controllables’ is not a mantra I invented myself. It’s one of those eternal truths that pervades all cultures in one way or another. It was reading Viktor Frankl’s Man’s Search for Meaning that brought it home to me though. And the mentoring I’ve been lucky enough to have over the years from Mike Pegg, aka The Positive Encourager.

At times, it’s become more than a mantra to me, it’s become a way of life. This was especially so during the years I home schooled my daughter through her GCSEs. The home schooling choice was a way to manage our non-controllables. She was living with ME/CFS. Getting into school, consistently, was just not possible. We had to find a way around it. We did.

It’s only through controlling the controllables that we can stay in the growth zone…

Recently though, I’ve started to notice myself slipping out of this habit. I’ve stopped controlling my controllables and started to feel overwhelmed and drained. Watching the following infographic going viral on various social media platforms has, thankfully, brought me back to myself.

You see, last week, since the change in Government messaging from ‘Stay at Home’ to ‘Be Alert’, I’ve began to tumble arse over elbow away from the growth zone, to thunder through the learning zone and to fall frenetically towards my factory setting – the fear zone.

“Aghhhhh! This is not me! This is not who I want to be!” became my internal monologue.

I knew exactly what to do though. I went back to basics and clarified what I could control and what I couldn’t control. I then built on what I could control and found ways to manage what I couldn’t.

It was as easy as 1,2,3 (well, 1,2,3,4 actually). I’d done it before. I knew it worked. I could do it again. And I did do it again.

Here’s how I took control of my controllables this week.

Step 1: I clarified what I could control…

Looking at the examples in the fear zone of figure 1, I was quick to realise that I had not fallen into many of these behaviours at any time, and that those I had –‘complaining’ and ‘getting mad easily’ – could be easily controlled.

Hurrah! I immediately felt freer.

There was something else that was impacting me far more than any of these things though. It was my loss of the concept of time. I so wanted to write time in the ‘I can control’ section of my controlling the controllable grid. But, aware that I had not yet been able to locate or build a tardis, I decided to put ‘time’ in my ‘I can’t control’ section, along with ‘the virus’.

Step 2: I clarified what I couldn’t control…

Moving swiftly forward to this step, I smiled upon realising there were actually only two things I couldn’t control relating to my current energy slump: ‘time’ and ‘Covid-19’ itself.  

Sure, they were big things, but there were only two. I felt even freer. 

Here’s how my thought process went.

I cannot control time …

Last week, it wasn’t until midday on Wednesday that I realised it was Wednesday and not Tuesday. It wasn’t just the day of the week that was eluding me either, it was the passing of hours. Hours, for me, were just moving too quickly and not in that nice way when you’re in what psychologists call ‘flow’. Nope, they were racing on in a frightening “WTF? I’ve still got all these things on my ‘To Do’ list to do and so far today I’ve been very busy doing – well, what – exactly?” way.

I wanted to slow time down. I couldn’t.

I cannot control the virus …

Last week, I also began to feel fearful for the people I know who believe they have had the virus and who were experiencing near constant fatigue and muscle pain, amongst other post viral symptoms. I feared for them and also for my daughter, who is currently as well as she has been in four years and is choosing to continue her part-time job at the local corner shop.

I wanted to control the virus. I couldn’t.

Step 3: You can build on what you can control…

So, stepping back to the things I could control, how could I build on them?

My first step here was to think about when, where and how I’ve controlled controllables before, to identify my successful pattern. And so the ‘successful patterns’ flashbacks began.

Flashback 1: My daughter’s illness and that balancing act of running my own small business around her health, wellbeing, and educational needs.

Flashback 2: The wise words of Viktor Frankl:

Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.

– Viktor Frankl

There were more positive flashbacks, but you get the picture so now I’ll get to the point.

Choosing how to respond is where our power lies…

We cannot choose what happens to us but we can choose how we respond to what happens to us. It was up to me to choose how to respond to these things that were stealing my energy. I’d made choices before about much more difficult things, without the life experiences that I now have to inform me that choosing wisely is where our power lies.

Working through number three on my controlling the controllables post its, I ultimately arrived at the reaffirmation of an old behaviour: I could choose my attitude to this pandemic and I would choose to continue to be optimistic.

Now, here you might need to bear with me as I know that I am very lucky in being able to choose optimism. Let me show you how I got there, with the caveat that this is just my experience and the hope that you can find your own way toward your chosen attitude.

  • We’re living in a climate crisis too remember, and this pandemic is forcing the world to slow down and showing us what our planet could be like if we were to make different choices about the way we live, the way we consume. Isn’t that something to feel hopeful about? 

I have many other things to feel hopeful about too, but they are personal and not for this forum. I bet you have personal things to feel hopeful about. I encourage you to find and focus on them.

Step 4: I could find ways to manage what I couldn’t control…

So, here comes the best bit: the energy that comes from realising that, although there are always elements that you cannot control, there are ways you can manage them.

Let’s look at my first uncontrollable: time …

I challenged myself to identify two examples of how I was allowing time to control me, yet where there was the potential for me to take back some of the control. The answers were so obvious, if I hadn’t learnt to let go of shame years ago (thank you Brene Brown), I’d have felt shame.

My care-giving habit was stealing time …

One of the reasons I was losing track of time was that I reverting back to my childhood pattern of responding upon being told to jump, by asking “How high?”. I was too busy looking after the needs of too many other souls and to an extent they neither needed nor (in most cases) expected.

I couldn’t control the fact that so many people I felt responsible for had needs. Or that I’ve been programmed since childhood to have a care-giving (I prefer this phrase to care-taking) habit, a habit that is not always helpful as it can enable self-sabotaging behaviour in others.

I could, though, control when and how I responded to other people’s needs …

For example:  

  • I could choose when to respond to requests, rather than just stopping in my tracks and responding in the moment; 
  • I could put a timer on my phone when working and refuse to be interrupted until this timer sounded (I choose to split my work hours into 45 minute ‘non-interruptible’ and 15 minute ‘available to respond to ‘actual’ needs’ periods).

I began to use my 45 minute slots productively. I let the phone go to voicemail. I let email and texts come in without checking them in the moment. It felt good. I no longer felt that time was controlling me. I felt even freer.

Now let’s look at my second uncontrollable: the virus …

In setting my 45 minute timer, I realised that one of my non-controllables (time) was being fed by the other (the virus, or more specifically, my fear of the virus). My pattern of being pulled away from a task in hand wasn’t just a reactive thing. It wasn’t just me responding to others’ needs. I was proactively and constantly seeking ways to control the virus. This pointless behaviour was just feeding my fear and pulling me away from my task.  

For example: 

  • I was compulsively checking social media;  
  • I was planning my whole day around the Covid-19 press conference. This had become my highlight, my ‘joie de vivre’. I could not control what time it was on, what they were going to say or how they were going to say it (which often made me feel angry). And I was also finding it difficult to get back into flow and do constructive things after watching it; 
  • Now people were expected to ‘be alert, rather than ‘stay at home’, every day my daughter had a shift at work, I was worrying about whether she’d come in contact with the virus. I feared how her body would cope with it. A good deal of time, energy and focus was spent worrying about this big invisible thing that I could not control.  

Just like I’d found a way to manage my inability to control time, I could find a way (or ways) to manage my fear of Covid-19: 

  • I could be intentional about not checking social media constantly – my 45 minute dedicated work time was already helping here; 
  • I could just stop watching the press conference. I could catch up with the day’s event at the end of the day via my chosen reliable sources, if I still wanted to; 
  • I could applaud my daughter for her bravery, take pride in her attitude, and put steps in place to support her to control her controllables by, e.g., taking responsibility for her own health and safety.  

I’m no longer constantly checking social media. Neither am I watching the press conference any longer, just the news. I am amazed and inspired by my daughter, who continues to stay in her growth zone, no matter what. I no longer feel as drained and overwhelmed. And I am no longer tumbling, thundering and falling frenetically towards fear. I’m back in my growth zone, feeling free even though I know I am not.

What strategy do you use as a family carer that might help others cope with their Covid-19 experience? Get in touch or head over to The Pod and get sharing!