Issue 10: Hear from the ENO Breathe Community

In our tenth issue of the ENO Breathe Newsletter we have collected lots of news, events, awards and stories from the past few years, but we also wanted to use this opportunity to share advice and tips from this amazing community. Carry on reading below, or click on the links below to jump to a particular section, or article:

An intro from Jo, our participant content curator

Artistic contributions from past participants, James and Sue

A collection of news and acheivements from the past three and a half years

Your contributions to a list of “what I know now” living with long Covid

Top tips and mantras for managing long Covid

An intro from Joanna Herman, our participant content curator:

Jo: It is a month of anniversaries… one to be celebrated: two years since our newsletter began (our 10th issue now), and the other rather more sobering: 4 years since the start of the pandemic, and for some of us, the start of our (tediously) long Covid journey. So, it is a difficult month for many.   

But let’s dwell on the positives:   

Since our first edition we have grown from a few hundred, to a community of nearly 3500. Some are starting our long Covid journeys, some have finished, and others are still on the tortuous path. We have evolved into a wonderfully resourceful community that is both a joy and a privilege to be part of. I feel grateful that despite the shocking lack of clinical help I’ve had, I managed to get referred to ENO Breathe – it has been a lifeline for so many of us, no explaining to do of why we need a lie down, no excuses needed if we need to finish early, or if we just want to listen and not partake… just come as you are…fully understood and fully welcomed. 

The newsletter has flourished keeping us all connected, sharing our long Covid journeys and stories of triumphs and tribulations.  

A quick google on the traditional 10th anniversary symbol was the rather uninspiring metals: tin or aluminium, but what they are representative of does, I think, reflect what so many of us had to find with long Covid… i.e. strength and flexibility. 

I have been really moved by what so many of you have shared in response to my callout for submissions. So much resonated, showing admirable courage in what many of us have had to face – however big or small the challenge, we have risen to the endless hurdles that a long illness puts in anyone’s path. But with this often comes new openings, possibilities and connections: possibly the silver lining of this (or any) illness. We are a unique community for long Covid, bound by laughter, breath, song and some seemingly daft (think spell casting!), but highly effective exercises. Long may that, and the friendships forged, continue. 

I leave you with words of the wonderful song that Rob introduced us to some months ago, which I think should be the anthem for long Covid… it has forced us to slow down, but what joy we can find when we really do slow and savour. They would be wise words for anyone to adhere to, long Covid or not: 

What am I rushing towards,

What am I rushing for,

Slow down, slow down,

Slow down and savour.

Artistic reflections on ENO Breathe

Over the years of ENO Breathe, poetry has offered comfort and inspired many poets amongst us, the ENO Breathe community.

Sue Robbins: The below sonnet is an attempt to capture the feeling of breathlessness, and how that has affected my view of the world. 

A Short Walk 

What was a just appreciable track 

begins to peter out altogether 

and my concentration gathers itself up 

to note the scrubby grass, the sheep and heather 

how the failure of my energy to last 

means once again this is no small endeavour 

as every other breath becomes a labour 

and near horizons loosen and untether. 

I’m struggling to addressmy limitations  

(which isn’t just a matter of more patience

for that I’d have to take leave of my senses 

and divorce my body from the evidence) 

when seeing me, a hiker stops to gesture 

at the understated glory of the heather.

A look back…

We have picked out our favourite bits of past ENO Breathe news, and collated them here for you to have a look through: News from the past three and a half years of ENO Breathe.

What I know now (and wish someone had told me at the beginning)

Collated Lessons from the ENO Breathe Community

There have been many common themes that you have shared as coping strategies and top tips for living with this illness: practical and joyous, imaginative and unusual…but if they work for one, then maybe they might work for more. Some are really obvious now after living with this illness for so long, but if only someone had told me right at the beginning it would have made the long Covid rollercoaster a much smoother ride. It feels like what we have come up with has evolved into something much bigger than a few tips: perhaps a guide for living with long Covid. 

Some of the Rudimentaries: 

Grieve: Allow yourself to grieve for your former self…it may return, but there may be a prolonged period when it’s just not there. It’s so hard to let go of what you used to be able to do but when you do it certainly makes life easier. The little voice in your head berating you for not being able to do something when previously you didn’t think twice about it. I’m sure you are all familiar with the 5 stages of bereavement some, or all, of which may apply in life-changing illness: denial, anger, bargaining, depression, acceptance.  

Acceptance that things have changed: again, they may go back to how they were, but better to reach a place of acceptance that there is a different you at the moment. Perhaps the hardest lesson to learn, but acceptance doesn’t mean that you are giving up hope of full recovery – it’s about finding some peace with the place you are at for the time being. 

Embrace this new self:  

• Adjustment to your new/current self: finding new ways of doing things that make things manageable… sometimes you need to be quite inventive, but there is usually a way. Afterall long Covid is not the first longer term condition to exist (I refuse to call it chronic as I still believe that I will fully recover).

• Celebrate what you can do: focus on those triumphs (what I call the green shoots of recovery) – however big or small they are, and don’t focus on what you can’t do. 

• Reframing how you view life – almost like learning to look through a different lens. Things can be just as joyous and fulfilling but perhaps in a different way – and maybe not the way you imagined (comes back to adjustment). 

• Learn to put yourself and your needs first as much as you can (possibly one of the hardest lessons, and not always possible): set your boundaries. If you know things are not working for your illness, try to find other ways of doing things rather than pushing through. For those who depend on you, putting yourself first means that you are in better shape to be able to support others (not easy I know!). 

• Learn to rest properly: most of us don’t realise what proper rest is, until we’re forced to. Not done while watching TV or doom-scrolling, or chatting on the phone. Proper rest means physical, mental and emotional i.e. a total switch off for brain and body.  

• Permission: give yourself permission to be just as you are: if you need more rest despite having had a full night’s sleep, then allow yourself (if possible) to do what needs to be done. Some days are just like that, and we all know that everything passes, but sometimes a lot of rest is just needed. Remember that bad days don’t last forever, and we all have peaks and troughs: it’s the nature of the long Covid. 

• Ditch the expectations: life is not how it was before, but that doesn’t mean you can’t celebrate the one thing you manage to do that day. Expect nothing and you can only be pleasantly surprised. 

• Be true to yourself: don’t think you might be imagining it all… what you’re feeling is real and there are 65 million others around the globe who have also been experiencing this very real illness (whatever some naysayers/conspiracy theorists might like to think!). 

• Laughter and connection: being with people who are uplifting and easy to be with, that require no energy on your part… even if not up to partaking just being present with others makes the journey less isolating. So many of you mentioned the ENO Breathe sessions as a lifeline, a community and a lot of fun – tune in to what is accessible for you. Sharing the journey with others in the same boat lessens the load. 

• Find joy in the little things, and try to find at least one thing each day, be it seeing or doing something. It may be in unexpected places or things close to home e.g. just sitting outside gazing at the sky or listening to birdsong. Find things that are appropriate to your physical state that day. More joy = more energy 

• Listen to one’s body and rest when it tells you. Of course, it doesn’t always tell you at the appropriate time – we’ve all “crashed”! And we still need that early warning system. But with time I think we all become much more tuned in to what our bodies can manage and what is clearly too much. 

• Look back month on month, not day by day – it’s easier to see how far you’ve come. We all know that some days are better than others, but generally the trajectory is upwards if you look at a longer one. 

• Remember that you won’t die of breathlessness (even if at times it feels you might!). 

• Some degree of recovery will happen – and it may be complete. 

• That LC is a B#+&ch’ and it can be unpredictable and changing – accept it. 

• Be prepared for fresh challenges along the recovery road. 

• The three P’s: pacing, prioritising and planning. However tedious they are, they really do work. 

Our body battery has to run all physical, mental and emotional functions… if you have a marathon meeting due that will required all your brain power, perhaps you need to shelve your usual exercise that day: it’s about choices and prioritising, and with time (plus trial and error!) we all get better at it. 

• Be mindful: I know it’s a buzz word but it works. Being 100% focused on what you’re doing, and not trying to do lots of things or allowing your brain to wander really helps direct limited energy reserves where needed.   

• Relax everything and breathe. A lot.  

• And… sing like there’s no-one listening. Especially when no-one’s listening. Even if you have no real singing voice!  

Big thanks to those of you who have shared your pearls of long Covid wisdom: Maria Sophie Quine, Andy Searle, Chloe Leckie, Sayeeda Satteur, Dave Peckitt, Gay Caul, Liz Hughes, Kam Samdhur, Louisa Cliff, Clare Norrish, Angela Jones, Alison Goldie, and Anne Topping.

Tips and Mantras for long Covid

We’ve gathered tips and mantras from the ENO Breathe Community. We have compiled them into two lists for you to print out, or save, and keep as little reminders. 

Your top tips for long Covid:

• Grieve
• Accept
• Embrace your current self
• Adjust
• Celebrate your achievements, however small they may seem
• Reframe your view of life
• Rest properly
• Permit yourself to be just as you are
• Ditch the expectations
• Be true to yourself
• Laugh…A LOT!
• Find joy in the little things each day
• Listen to your body
• The three P’s: Pace, Prioritise, Plan
• Be mindful in everything you do
• Relax everything and breathe
• SING anywhere, anytime

Download a PDF version of the top tips here

Your mantras for long Covid:

• Recovery is non-linear 
• Bad days don’t last for ever 
• Go with the plan not the mood (don’t get diverted!) 
• I won’t die of breathlessness, even if it feels like I might

Download a PDF version of the mantras here

ENO Breathe Newsletter Issue 10, suggestions submitted by members of the ENO Breathe Community

Thank you Jo, and all our past participants for your contributions to this tenth edition of our newsletter!