Issue 8: Hear from the ENO Breathe Community

Sue Robbins: A Short Walk

Sue used to write poetry before she got Covid, but with the brain fog and fatigue she experiences, has found it was enough just trying to keep up with work. This sonnet is the first thing she has written since getting Covid 3 years ago and it is an attempt to capture the feeling of breathlessness, and how that has affected her view of the world.

Rachel Johnson: Covid: The Sequel

Like most of us would be, Rachel was expecting groundhog day of the worst kind when she got Covid for a second time. However, she was pleasantly surprised that Covid: The Sequel turned out much better than her experience of Covid: Part 1…

Catherine Tregoning: I’m a Chartered Health Psychologist with Long Covid: Let’s talk about coping!

Catherine uses her background as a health psychologist to share some tips for coping with what long Covid throws at us, from the perspective of both health professional and patient. 

Joanna Herman: Travel with Long Covid: spotting potential pitfalls and how to mitigate them

Jo has found, by trial and plenty of error, that there are better ways to travel to avoid downward spirals of long Covid symptoms. Here she shares her top tips for avoiding long Covid travel pitfalls.

Caroline Smith: running a half marathon in aid of ENO Breathe

In October this year, Caroline will be running the Henley Half Marathon and raising money for the ENO Breathe programme.

Sue Robbins: 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 address my 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.

Rachel Johnson: Covid:  The Sequel

My Covid journey began in January 2022.

I’d more than likely had Covid as soon as we locked down two years prior and I was three times vaccinated by this point, so wasn’t overly concerned, optimistically assuming my body would know what to do. It transpires that in fact my body had not received this memo: more like had taken one look at it, shredded it, thrown it in the bin and immediately set the lot on fire. The first few days after testing positive, my symptoms were nothing more than a heavy cold. It quickly became apparent that crippling fatigue was by far the worst symptom, which still plays a huge part of my life eighteen months down the line. For the next four months I struggled to stay awake for longer than 90 minutes at a time.

I had recently started a new job that required a 30 minute drive each way which was now impossible to return to, until I could safely get myself there and back to our rural home. My employers were brilliant and allowed me a very phased return over the next two months. Despite having spent the previous four months being flopped comatose on the sofa, in hindsight I realise that was far too much, far too soon, and I believe this perceived guilt to get back to work as soon as possible massively hampered my recovery.

I work in a primary school, and it became clear that the Covid had wiped out my entire immune system: every three weeks without fail for the rest of the year I ended up bed bound for a week with whatever the latest round of germs were – chest infections, tonsillitis, ear infections, the heaviest colds with dangerously high fevers, vomiting bugs: you name it, I had it. The impact it had on family life was immeasurable. In fact I didn’t have much of a life for most of 2022. Repeated blood tests showed me to be a near perfect picture of health and at one stage my desperate pleadings via the e-consult system resulted in a stern call from a GP asking me to stop wasting everyone’s time with yet another “minor sore throat.” Thankfully at some point an antibiotic-requiring illness led me to a slightly more sympathetic GP who referred me for some long Covid support, one branch of which was the ENO Breathe programme.

I will forever be grateful that I was asked to participate, which happened at a time when my mental health was really starting to dip nine months into continual illness.  The validation I felt from meeting other sufferers in real life (via zoom) brought me to tears on more than one occasion, as these were the first people who ‘got it’ and understood the impact of it all. It was genuinely a lightbulb moment for me knowing I wasn’t imagining it all, or being accused of making it all seem worse than it was, and gave me a much-needed boost.

My annus horribilis sadly concluded with yet another week of horrific illness with a severe chest infection requiring antibiotics as well as steroids, and I completely missed Christmas, New Year and my early January birthday: I termed the illness ‘no-vid’ as not once did I test positive for Covid despite feeling more unwell than I did for those first few days of having it back in the January of 2022. That was a turning point for me in terms of trying to keep myself safe from further infection, so apart from at work, I returned reluctantly to mask wearing when out. I also tried harder to listen to cues from my body about what it needed be it rest, or rescheduling things to avoid overwhelm, and to not be afraid of prioritising my body’s needs. As well as now being in a position to get myself fitter, I finally started to see occasional glimpses of my pre-Covid self in the spring months.

So imagine my horror then when I tested positive for Covid again back at the start of May, two days after a colleague did. The panic was palpable. Armed with lots of exercises from the Breathe programme, as well as my newly found positivity and advice from the long Covid clinic about life in general (such as reaching out for support, even just to ask a friend to do the school run), I did feel a lot more in control about what my body needed to do for this round of Covid. Six days later I was back at work. The only thing that lingered was a dull headache, and I am delighted to report there has been no further decline in my ongoing recovery from long Covid since this latest encounter with the virus. It was a shock to hear so many comments along the lines of “oh gosh, you aren’t still worrying about that are you?”.

I appreciate Covid began over three years ago now and is probably a bit old hat for many, having long fallen off the radar, but for the likes of myself, the reality continues. It is a shame that ongoing covid symptoms are not widely addressed anymore, and it is a conversation I am very happy to have with anyone who will listen. I just wanted to send hope to anyone else with fears about catching Covid again that actually, it is possible to be back to your usual activities quite quickly, especially if like me you’ve had ongoing support since diagnosis and a few tricks up your sleeve. ENO definitely were in my thoughts and actions during it all, and I will be forever be thankful for this.

Catherine Tregoning: I’m a Chartered Health Psychologist with Long Covid – Let’s talk about coping!

I contracted Covid in March 2022, and it soon became apparent that my symptoms weren’t going away any time soon. Inevitably, I was diagnosed with Long Covid and continue to struggle with a long list of symptoms. One of the hardest things has been the breathing issues which now mean I’m unable to walk very far and interferes with my incessant need to talk!  As a Mum with kids, mobility and fatigue problems are particularly difficult. And as someone who’s self-employed and ‘trying’ to run my own psychology practice, work is major challenge. And exhausting. The illness has been life-changing.

As a Health Psychologist, I’m now suddenly seeing things from a patient’s perspective. This often ‘invisible’ condition, like other invisible conditions, has so many challenges. It’s so common, yet can be so difficult for others to understand.  Even for health professionals.

Any change in life can be difficult and stressful, even the smaller changes or changes we want (like a new job or to move house).  Change throws out all that we’re familiar with. Instead of running every day on auto-pilot, suddenly everything has to be re-thought. With the sudden onset of Long Covid, change can affect every aspect of life…. our daily routine, work, hobbies and interests, relationships, mobility, and other physical and mental capabilities.

So how can we help ourselves to cope with all of this? Here are some practical suggestions to help us adapt to this major change.

1. Use distraction

It’s common to feel stressed and anxious when we become unwell. Stress results from feeling you can’t meet all the demands put upon you; anxiety comes from all the unknowns.  So, give yourself mental breaks. Schedule in time when you won’t mentally deal with ‘stuff’ that’s causing you stress and/or anxiety. Instead, do something you enjoy, that will occupy your mind and distract you. Stress can exacerbate health problems, so it’s important to try to manage your stress levels.

2. Use your breathing

Remember the exercises from your ENO Breathe programme: focusing on breathing exercises is something which is perfect for occupying and distracting your mind. They also calm you down.  Even just a few deep breaths will tell your mind and body that you’re calm, and give you a little boost of oxygen. Shallow ‘stressed’ breathing adds to fatigue through reducing your oxygen intake, so you want to avoid that. Your breath is always with you, so is always something you can use as a coping tool.

3. Talk, talk, talk about it

It might seem a cliché, but talking really does help. To explain how we feel to others, we have to put our thoughts into some form of logical order and make it all make sense.  So, talking to someone else helps us to ‘sort our head out’. It’s easy to feel isolated when ill, so meeting up for a chat or talking on the phone, helps with this.  Letting someone else know how you feel, can result in them offering not only emotional but practical support.

4. Try to find others ‘like you’

That might be someone else with long Covid, or with another chronic condition. This can take away the feeling that we’re the only one going through something like this.   It can feel great to meet others who fully understand, and sharing information and experiences can hugely help coping.  Charities and programmes like ENO Breathe can really help connect us.

   5. Remember that a bit of self-care goes a long way

As someone now with chronic fatigue, I have days where I totally feel like not dragging myself out of bed.  So, I ‘get’ how tempting it can be to stay in pyjamas, unwashed, teeth unbrushed! However, as a Health Psychologist, I would say this can in fact make you have a feeling of being even more ill. Freshening up, getting dressed and ‘acting’ like you’re a bit more well than you are can make you feel perkier.  So, if you can get up and out of your PJs, you might feel brighter.

6. Try to adapt to change rather than resist it

When you first become ill, your instinct can be that you have to try to ‘get back to normal’. I did exactly that – and fell flat. I realised I’d have to adapt. It’s hard to accept the change because we want things to go back to how they were. In the 1960s a Swiss Psychiatrist (Elizabeth Kubler-Ross) developed a theory around how we adapt to change and reach the acceptance stage (see Diagram below). It takes some people longer than others, and some move backwards and forwards through the stages.  However, once acceptance is reached, you start finding ways to do things differently and get more out of daily life. Look at the model and think about where you might have been a few months ago compared to now.

7. Finally, always ask for help if you need it

This might be help with practical things, or help with coping socially, emotionally or with your mental health.  Ask friends, family, OR anyone you find approachable.  Contact one of the many charities which you can find online who support mental health, Long Covid patients, or those with other related health conditions.  Talk to your GP, as they will be able to refer you to appropriate mental health services, in addition to any specialist physicans that may be needed.

I hope that something in this article is helpful to those of you reading it.  Long Covid can be tough to cope with, but always remember that there are things you can do to help yourself and others with it.

I’m on Instagram if you’d like to find out more about coping with Long Covid from a Health Psychologist’s perspective:

@long_covid_mental_health
@dr_catherine_tregoning

Dr. Catherine Tregoning PhD CPsychol AFBPsS
Chartered Psychologist

Please note, Catherine’s piece is not connected with the medical expertise given by ENO Breathe or the Imperial College healthcare teams. 

Joanna Herman: Travel with Long Covid: spotting potential pitfalls and how to mitigate them

Having recently endured the trial of navigating Barcelona airport, I wondered if airports have generally got bigger, or do I just take more note of the size (and the battery power required to endure them)?  I was on my way back from a magical time deep in the Pyranees, where the only vista was tree-clad mountains, the only sounds the thrum of insects and trickle of mountain streams…a veritable garden of Eden.  But the journey was a huge challenge.  The flight to Barcelona, the 2.5 hour bus journey to Perpignan, and a 1.5 hour minibus ride round endless winding mountain roads.

But I didn’t do it all in one go.  I learnt from my mistake some years ago with my first trip 6 months into long Covid: a 3.5 hour flight followed by a 2 hour drive (by someone else) across the island of Crete, which took me days to recover from.

I know many people with long Covid have been worried about travel and how it might impact negatively on their symptoms.  Much as people with young kids or toddlers used to be almost fearful of long-distance travel, with many choosing to avoid it altogether. Often the fear of what might be is not borne out by the reality of the experience.

Given it is the holiday season, I thought I might share my top tips for travelling with long Covid, how to make it easier, and how to minimise the effects it might have on symptoms.

So here are my suggestions learnt through, at times bitter, experience:

1. 1. Book mode of travel at sensible times: If you know you’re worse in the mornings go for an afternoon flight or train, and vice versa. Cost will be an influencing factor, but if it’s only a bit more it’s probably a price worth paying so you can enjoy more of your time away and need less recovery time.
   2. Book assistance. I never thought about this as I didn’t consider myself to warrant it. In the years prior to Covid we’d be travelling each summer with my elderly mother who eventually capitulated and agreed to assistance, so my view of that need was skewed. However, a friend who worked for the airline I was travelling with booked me some. And thank goodness she did. That first trip I couldn’t stand for long periods in queues or walk long distances (it can be a mile from check in desks to departure gates at Gatwick, not to mention walking the length of the platform at Paddington or Euston past 12 coaches of a long train). Factor into that, dragging a wheelie bag or carrying some hand luggage, everything takes its toll on long Covid battery power. So now, whether a long train journey or a flight, I book assistance.  It makes a huge difference to how I arrive the other end. Friends often seem shocked and surprised that I would need it, but then they don’t tend to see me on my bad days when I keep myself to myself. But I’ve also found surprise at the assistance desks, be it station or airport. I have often been asked who’s the assistance for….when I reply “myself”, the person behind the counter will usually look me up and down as if to say, “you look fine to me”…but we all know LC is an invisible disease. The disbelief is even worse on the return leg when I may be tanned and looking well!  But I’ve got used to brushing that off.  I know what I need and I have no hesitation in asking for it (likewise seats on a crowded tube).
   3. Paced packing. Make a list well in advance. Start weeks before in case there is anything you realise you need to buy before you go.  My era of just popping to the shops the days or even hours before departure, or picking things up at the airport are long gone. (Of course, you may be going somewhere where there are plenty of places to pick things up that you may have forgotten, but I seem to specialise in the ultra-remote where there are no shops anywhere nearby!). Do your washing well in advance, and start to put things together at least a week before.  What is key is avoiding anything that might be last minute in the days before departure. As we all know, rushing and Long Covid do not mix well.
   4. Clear your diary of anything but the essential for the days just before departure. Ideally have nothing planned except a rest day before the day you leave (the theory is good, although it doesn’t always work in practice despite the best intentions).
   5. Pace your journey. If there are multiple legs to your journey try and have a day between them to recover. I had a couple of nights in Barcelona to get over the flight and the efforts of just getting organised prior to departure (why is there always more to do than you think?), which meant that by the time I had to do the two buses for 4 hours to the Pyranees I felt much better.
   6. Think ahead to your arrival: could anything booked in advance make your arrival easier? e.g. pre-booked transport rather than having to stand in a queue; if arriving late and staying somewhere that provides food could you pre-order to have it in your room so that when you get there you can just eat and collapse into bed.
   7. Don’t get carried away……you may want to do all the sights at your destination, but they will always be there, and you may need another trip to see them all. I had to satisfy myself with a wonderful view of the famous Gaudi Casa Battlo in Barcelona from my balcony – I knew a 2 hour tour with a bunch of others after all the travelling would do me no favours at all.  Instead, I wandered around the backstreets soaking up the atmosphere and café culture, and admiring plenty of beautiful architecture along the way.
   8. Ditch the expectations….and you may be pleasantly surprised. For the first year or so of my Long Covid journey I always went away hoping to be able to do x, y and z. But I’ve now ditched that attitude, and I don’t really expect or even hope to do various things. I just enjoy and celebrate what I do manage.  I very much live in the moment, of how I am feeling, and I don’t beat myself up if I can’t do things….I guarantee you’ll be pleasantly surprised by what you do manage.  But like everyday life with Long Covid, it’s about deciding what you want to prioritise.
   9. Mitigate for the return. Plan to come home a day or more earlier than you usually would to give yourself time to get over the travelling prior to return to work or any other commitments.  You may regret having to leave your paradise a day early, but believe me you’ll thank me!

   I’ve found that with all the above, travelling is much more doable and enjoyable, and I need less recovery time both going out and on return. Holidays are meant to be rejuvenating and even with long Covid I think they still can be.

   Bon Voyage!

   ---

Caroline Smith: running a half marathon in aid of ENO Breathe

I’m running the Henley Half Marathon in support of ENO Breathe.

Donate towards Caroline’s £1000 fundraising goal for ENO Breathe

Prior to contracting Covid in April 2020, I had enjoyed long-distance running. However, the virus took nearly everything from me.  I felt close to death and spent the following year suffering from recurrent pneumonia and breathlessness. I was constantly and rapidly mouth breathing, and had difficulty doing simple activities such as walking or making a hot drink. My long Covid NHS clinic advised me to try the ENO Breathe to see if this would help me regain some control over my breathing.

Attending the programme was a great comfort: I no longer felt alone with the condition, and the simple pleasure of singing whilst doing breathing exercises skillfully re-settled my respiratory rate. Using the exercises we were taught enabled me to take on more physical challenges. I even discovered that I could e-bike better than I could walk! Eventually I was able to walk further, and then decided to start the well-known 5k run plan. Finally, I could see progress in my physical health.

Since doing the ENO Breathe programme I have continued to challenge myself. Although my lungs and heart may never fully recover, I have been given the all clear to strive towards my next goal, a half marathon.

Usually, I would run this for myself, but it gives me the opportunity to give back to ENO Breathe who have helped me on my Covid recovery, and continue to help so many others.

I have committed to raise £1000 to support the the programme and wanted to invite you to join me on this journey.

Donate towards Caroline’s £1000 fundraising goal for ENO Breathe

A huge thank you to everybody who contributed content for this issue. Please do get in touch with any ideas or submissions that you would like to be considered for future newsletters. This can include poetry, prose, artwork, or anything else. If you want to write something but you’re not quite sure what, please do get in touch at [email protected] to chat about it. 

– Joanna Herman, Content Curator