As we edged ever closer to lockdown, I noticed how notably little my life was changing compared to everyone around me. I spoke to Nick Parker yesterday, who's self-isolating while living beyond the odds of a cancer diagnosis. We both noticed that perhaps the upheaval in our own lives in recent years had somehow prepared us for this.
On the first day of 2016 a virus that developed into ME/CFS turned my world upside down. I was often confined to my bed, sofa and house as weeks lapsed into months and eventually years. I was forced to let go of my career as my social life and much else I used to enjoy slipped away. As my mobility improved, my physio set a daily walking limit of 20 mins a day to stabilise my activity levels. At first, I felt as if I was under house arrest. Over time, I understood that limiting my activity was actually getting me closer to walking further again. And it did.
If you are self-isolating (and I know how lucky we are to be even talking about this given the reality of Coronavirus out there), this is what my experience taught me that might be helpful right now.
You are a highly adaptable and resourceful human
It's biology, even if you don't 'feel it'. You will adjust. You will start developing new habits and values that you will take with you long after all this is over. When every spoonful of energy my body possessed was rationed, I was forced to take on my grandfather's military preoccupation with the 'laws of time and motion'. And I've noticed how efficient that has made me now my functioning has returned. I had to transform being able to ask for help. I went from struggling to ask someone to carry my bag up some steps to being able to ask strangers to carry my backpack around the entire world for me. You are creative and inventive and more capable of finding solutions than you know. You have probably already adapted far more than you have even realised.
Connecting with family, friends (and strangers too) will be your life raft
In the end this was most of what life boiled down to for me. Being chronically ill is incredibly isolating and I survived because of my family. Some old friends slipped away, lost in their own busyness, others showed themselves in iridescent colours. My guitarist Maitreya and I would send each other long recorded monologues... it meant I could speak to him any time I needed to while he was in the studio... "I'm lying on the floor and I can't move....", He would press record to chat while he drove home. Now as I listen back to copies of our recorded 'letters', they show me how far we've both come.
Today I am watching people becoming paradoxically more connected than ever, despite the physical distance. I much prefer Esther Perel's description of 'cocooning' rather than self-isolating. We are nesting and keeping safe. We are not hostages. Some of us are longing for solitude - we have no choice but to make our relationships 'work', to get through this experience saner, healthier and with friendships intact. While there will be some very real exceptions to this, if you are getting through this on your own, the likelihood is that you are not actually alone.
Your sense of time will drift
Lockdown may feel like a new kind of forever. We regress into a new feeling of eternity in situations like these, and it can be deeply disquieting. Once the initial shock and confusion subsides, time can start to pass frighteningly quickly. Without the demarcation of location, one week can race into another, perhaps leaving you wondering what you've really achieved. The uncertainty can leave us feeling somehow adrift, lost or even sinking. All I would tell the version of myself that lived what felt like day after day on the square distance of a blanket on the floor of her flat four years ago, is that things will change. You will find a way through - one moment at a time it will be given to you - until one day, you will be looking back at this experience and finding something in it that was worthwhile.
Routine and discipline will get you through
Even if it's only one practice, do it every day. Mark some key actions to do at a certain time and stick to them. Find structure where you can, even when it feels almost unbearable. Do it kindly. Keep doing what needs doing. Be realistic about your expectations. Meditating was nearly impossible during the early stages of ME/CFS, until I found the most basic guided practice that I could build on as my mental state improved. I'm currently starting my day with Wim Hoff's breathing and now my parents are too.
Many of us are living through a certain amount of anxiety and anticipatory grief, even if it only sneaks up on you occasionally when you thought you were coping perfectly well. But you can control most of your behaviour, you can choose what you make this time mean and you can choose your response. And the power lies in simple, repeated actions.
Let yourself grieve the losses
Whole aspects of your life might fall away from you... hopefully for now it's only for a time. Dance classes, football practice, festivals, meetings, book groups... whatever it is that made you 'you'. And you might have other losses. A business, a career. There isn't a quick answer - the fact that I still physically struggle to sing in public after 20 years of near constant performing before illness hit still gets to me sometimes. But the grief has subsided. And I have been given so much in return; a completely different appreciation for who I am and what really matters. I have no interest in wallowing but you have to let yourself feel it. And mourn who you used to be and the world you knew, before a new self can emerge.
You might find a new comfort in the ordinary and the domestic
As I let my old self, and the existence I knew fall away (I loved much of my London life - I was dragged away from it pretty much kicking and screaming) I started to find a new contentment in the profoundly ordinary.
It took years to get over the struggle of trying to do every day tasks. I'd sometimes need 2 hours rest from getting dressed. Eventually I found comfort in the moments that would have left my pre-chronic illness self bored out of my mind. Maybe that was the point. I had to do everything so slowly. I would sit and stare into space, study the birds, feel the water drip down my arm as I methodically washed up. I found a new appreciation for the everyday that I hope I have never lost. And that has been more pronounced in recent weeks.
Right now it can feel laborious too; the endless hand washing, constantly thinking through what you've touched on a walk.... But all of this can help drag us, however reluctantly back into the moment, until the beauty of it might even sneak up on you too.
Don't put too much pressure on yourself
If you're not being your greatest or most productive self right now that's OK. You are surviving. Perhaps you are the reason your whole family is surviving. Rest if you can, when you need to. Wake up a bit later if you need to. Give your body what it needs. Ask for what you need. Prioritise your immune and nervous systems. Dance the dance between determination and self-compassion because there are times when being determined and single-minded is the kindest thing you can do for yourself (the thing that gets you out of bed in the mornings), in other moments it definitely isn't. Experiment with the wisdom to know the difference. Try it and see where you end up.
There is so much more to us then what we 'do'
It took all my 'doing' to be taken away from me to really understand this, and I still forget all the time. That what I 'do' out in the world doesn't matter half as much as the way I do things. That and who and how I love. I used to be something of a high achiever and that's far from a priority any more. It's not that I've let go of ambition, it's more that... I've already won a one in 400 trillion ticket to life as a human on planet earth. Being able to walk whenever I feel like it is a great start. If you're responsible for anything it's to make sure you don't get so wrapped up in yourself and attempting to prove that your existence is worth something that you forget to join the party.
Coming out of this will be just as, if not more challenging as getting in
Accepting a new reality of lockdown is one thing. Recovery and reentry is rarely straight forward. Even with a full recovery, my life will never be the same after CFS/ME. I very much doubt somebody will press a button and life will immediately return to 'normal' for us all after Covid 19 either. I kept giving myself 6 months to get back to full health - perhaps that felt both reassuringly close and realistically distant enough for my nervous system to cope with.
In many ways I hope we never return to business as usual. To a world that constantly leaves the lights on, prioritises productivity above all else and has forgotten that life is cyclical. We're going to have to 'dance' our way out of this too. It can be difficult to get a taste of what you've been so desperately missing and then restrict your activity levels again. It may be that we see multiple lockdowns that vary in length until this is really over. But one day lockdown will be over. We will come out of this with losses, and we will come out stronger too. But what we make of this time is up to us.
An ME/CFS Thriver