Issue 1: Hear from the Breathe Community

Welcome to the participant part of the ENO Breathe Newsletter, which I will be curating. I acquired Covid in the first wave, and I find it really hard to think I’m at my two-year anniversary (although anniversaries are usually something to celebrate!). Like many of you, I am still riding the physical and emotional rollercoaster that is Long Covid.

Pre-Covid (do you remember those days?) I worked as a Consultant in Infectious Diseases in the NHS, lectured at the London School of Hygiene and Tropical Medicine, and also taught a very dynamic form of yoga (Ashtanga). All that has changed. I haven’t been able to return to work as a doctor, and still remain a long way off being well enough. The yoga I now teach and practice is much more sedentary. Galvanised by the lack of help that people I knew were getting with ongoing symptoms following their acute Covid infection, I started a yoga group to help with recovery, focusing on specific breathing techniques to help them access their lungs and breathe again. At that stage (May 2020), it wasn’t called long Covid but none of us were getting better, having all been ill around the same time in March. Unable to work, I started writing articles for the national press, the first one prompted by my frustration at the lack of care for anyone, like myself, who had not been admitted to hospital. I’ve continued to write when I can, alongside doing podcasts, and every now and then I am interviewed by the BBC when they want an opinion on long Covid. There still seems to be so much need for help, and stigma persists for many of those with the condition.

When I finally managed to get onto the ENO Breathe programme, it was like a breath of fresh air. Up until that point, apart from the yoga group, it had felt like a very lonely path into unknown territory. What a joy Suzi, Lea and others bring to our homes on their zoom squares, and for me it was wonderful to feel like I finally had some support. I always come out of a session feeling chilled, and uplifted with the wonderful melodies we sing. However, one of the best things for me, and I’m sure for many of you, is the camaraderie that has come from WhatsApp groups formed during our original cohort. We have shared so much of this difficult journey together: we laugh, we cry, we share symptom conundrums, work dilemmas, good days, and bad days. But until recently we had never met.

That all changed with the trip to La Boheme, at the London Coliseum. Three of us from our group planned to meet and, if up to it, go out together afterwards. I wasn’t having a good week long Covid-wise before the planned trip, but really wanted to go – not just the excitement of finally getting to a West End performance again, but to actually see some of my virtual friends in the flesh. So, I cancelled anything that wasn’t essential for the days before, paced myself well (don’t you just hate that necessary ‘P’ word?), and finally got there. The three of us greeted each other like we’d known each other forever, surrounded by the pre-performance buzz of excitement on the top floor of the Coliseum. It was also good to meet some of the Breathe team (Katie, Tanja, Emily and Anya), and it felt like this was an extraordinary milestone for many having their first major outing. Being a regular theatre goer in my pre-viral life, it felt like a major step towards a more normal life. I knew I’d missed it, but didn’t realise just quite how much until I’d been. We all really enjoyed La Boheme, although perhaps seeing an opera about a woman who struggles to walk up the stairs because of shortness of breath and a cough might seem somewhat ironic for a group with long Covid!

After the performance we found somewhere with a sofa (I needed to be semi-horizontal by then), that served excellent cocktails. We sat there chatting for hours like old friends, talking about everything other than Covid, and discovering we had much more in common than just our symptoms. We now have a group called Culture and Cocktails, and will plan more outings. We all paid the price for days afterwards, but it was worth it!

I’m delighted to have been asked to curate the ENO Breathe participant newsletter, but this is YOUR Newsletter, so please tell me what you want to be reading about. We’re all living with long Covid – some further along the path of recovery, others still having it dominate their lives two years on. We’ve all had to develop coping strategies, modify our lives, and perhaps are struggling to see this as the new normal, and let go of our pre-viral selves.

Please email me with articles you’d like to be considered for publication, or that you’d like to contribute to, or topics you’d like to see covered in this newsletter. This is the space for your voice!

Joanna Herman
[email protected]
7.3.22