Issue 3: Participant Stories

Curated by Joanna Herman

Andy Hall: An Adventure to Nepal

After five weeks in a coma and on life support, I had to learn to walk again and use my left arm. During the subsequent five weeks, as I got fitter, I found my breathing was not so good. I then had a heart attack. So, a triple bypass and a valve later, I was told a six week course with ENO might help with my breathing and recovery. Still working and with a lot to do, even at 74, I decided to join them.

I live near the south downs, so spend many hours on them walking my dog and cycling. I also train young people for their Duke of Edinburgh award, so I needed to get fit again.

It is easy to sit in a chair, but I’m not someone who can just do nothing, so when my son said he was going to Nepal, I felt I had to go too.

I have been many times previously, but I was a bit apprehensive. I had done six weeks of the ENO Breathe Programme, and did feel my breathing was a bit better. I continued to do the exercises, and adapted them to help with my walking – breathing in for three steps and out for three steps. In a similar way, I adapted them to cycling: breathing in for three pedal cycles, and breathing out for three. As you can see from the photos (below), we cycled to 2000 meters, somewhat higher than the Downs at 270 meters that I had been training on. I think my improvement has been achieved by setting small goals in order to achieve the big one, combined with the help of ENO Breathe, and my strong sense of competition and drive.

I don’t think I will get back to my pre Covid fitness, but things have improved – last year I managed a 180 mile cycle ride that raised £1300 for the intensive care unit that looked after me for ten weeks.

While we were out in Nepal we rafted, cycled, walked and kayaked. The Nepalese guys we paddled with were so pleased to see us, as they knew how ill I had been, and how well I was recovering. I have now been there twelve times, and it has some of the best white water in the world. We have made some great friends, and in the last few years, we have also led a couple of trips.

Flying was not a problem, and although I was apprehensive, it was better than I had anticipated. It is great to still be able do what I enjoy it, but if I am honest, it is harder, although I am a bit older!

Lullabies: Hilary Thomson

ENO Breathe helped me to re-connect with my breathing at a time when, suffering from Long Covid, I was not only doing a lot of strange, ‘shallow’ breathing but at times felt I had forgotten how to breathe altogether! (It was a relief to find other people were experiencing the same thing because I thought it might be just me!).

It also helped me regain my voice, which had been damaged by Covid. I still occasionally get ‘husky’ and a bit hoarse towards the end of the day if I’ve done a lot of talking, but it is a lot better than before I started the course. And my singing voice, which had gone from fairly strong and confident to feeble and wobbly, is getting back to where it was. (I’m not a singer as such, but like most people I like to sing to myself from time to time!).

But interestingly I found ENO Breathe also connected me back to the lullabies that I used to sing to my children, which were the same as those my parents had sung to me.

My three children are now grown up, but some of the happiest memories I have from their childhoods are the quiet times at the end of the day when I would sing them off to sleep. It was soothing to sing to them and share some of the ‘stories’ behind the songs as we went. And it brought back happy moments with my parents, who had sadly died by then.

My father’s mother was from Tyne and Wear and one of the songs he must have learned from her was ‘Caller Herring’, a lullaby about fishermen going out to fill the ‘creels’ while children were asleep in bed: ‘While ye were sleeping on your pillow, dreamt ye ought of our poor fellow, darkling as they face the billow, all to fill yon woven willow’ … Also, of course, ‘When the Boat Comes In’.

My mother’s mother was descended from Dorset farmers and I wonder whether ‘Curly Locks’ and ‘Where Are You Going To, My Pretty Maid?’ were songs she heard from her mother.

All happy, comforting feelings which have helped me along what has been a long recovery of breath, voice and wellbeing for over two years. Thank you ENO Breathe!

Effie Galletly: The Push and Pull of Slow Recovery

The thing that bothers me most after more than two years of living with the aftermath of COVID-19, is the social pressure I am feeling to get better – be it real or imagined.  I know my life has become restricted by my symptoms. I recognise the reality of it having gone on for what feels like a very long time. I do believe that I am gradually, albeit very slowly, getting better. Am I imagining others thinking I should be better by now? Am I doing it to myself? It’s hard to tell sometimes.

Part of the reason for such worries is that there are so many symptoms of LC, and very little in the way of remedies. With my symptoms I may seem completely normal to others. It is almost as though the disease is invisible. In some ways it is lovely to be treated as normal, as that is what I want to be. It is a tug between these two elements: what I would like, and the reality of what I now am. The third element is a determination to get better. I want it. Family and friends want it for me too. Society expects it ‘by now’. It can be an endless wrangle using up precious energy that I need for other things.

My experience of having long Covid has opened my eyes to what many others live with all the time, the less abled of all kinds. Those who live with illness from childhood, those struck down by infirmity, by accident or freak event. There is lot to be learned.

But what’s to be learned from dealing with all the pushing and pulling? Well, I do my best to remember that even though it has been over two years since I contracted the virus, I know that I am much better now than I was a one year ago. When I am asked how I am I can honestly say, ‘Much better thank you’ but feel obliged to add, ‘a bit up and down still, but better overall. It’s a slow process’. I hold on to that to get me through, in the full knowledge that it may well be another year or even longer, BUT with the hope that it won’t be.

It is with these kinds of thoughts that I come to an ENO Breathe Twilight session. What a relief. I can forget that part of the struggle. I don’t know if others find this, but I am so happy to take part in these sessions and so grateful that they are available. There are no tests to be done, no blood taken, no X-rays. Just me. No, that’s wrong. There are all these other people and we are all going through many versions of the same thing. And then a Suzi, or a Lea, or a Rob, or a Jonathan pops up and we’re off. It is so encouraging to be given practical help that is given with such cheery aplomb. For me it has made a huge difference. From dreading a simple thing like a conversation with a friend, when I used to run out of breath and wasn’t able to contribute as much as I wanted, I now recognise when I need to step back and remind myself of the simple steps that will make a difference. And I succeed. Thank you ENO Breathe. Thank you for the practical exercises. Thank you for keeping the pressure off. Most of all thank you for making it fun.

Thank you to Andy, Effie, and Hilary for contributing to this newsletter. We hope that you enjoyed reading these articles.