I’m taking each day as it comes

Andy has a rare type of pulmonary fibrosis. At the start of the year, as the coronavirus crisis began, he was in hospital with a pneumothorax. He shares how he’s coped with lockdown and how he plans to approach the next few months, as many return to a relatively normal life.

I’ve been living with a rare type of pulmonary fibrosis called pleuroparenchymal fibroelastosis (PPFE) for 7 years now. In that time, my lung capacity has reduced by almost 50% and I’ve gone from being able to run marathons to laboured 5 - 10ks at an ever slower plod.

When COVID-19 began

When COVID-19 first came on the scene, I was only just recovering from my most recent pneumothorax. As a result I was physically and emotionally drained, and was very anxious at the prospect of catching coronavirus. I knew that as someone with a serious lung condition, I would be at higher risk of developing more serious complications were I to pick up the virus. However, the fact that I was also recovering from a serious lung collapse and a month in hospital with a chest drain, left me feeling even more vulnerable.

I made the decision to leave my small flat in London as soon as possible to go and live with my Dad down in Bournemouth a week ahead of lockdown. I didn’t want to be anywhere near the hustle and bustle of the city where the risk of infection would be far higher. Living with cleaner air, plenty of room and not far from the sea was far preferable to a cramped flat in a polluted and busy part of London, with just a few paving slabs for a garden.

In hindsight, it was the best decision that my wife and I could have made.

Coping with lockdown

That’s not to say that life in lockdown has been easy. Not being able to see friends and loved ones and my Dad being seriously ill a week after we arrived was really tough. However, on the whole I’ve been able to make a decent fist of it.

From the beginning, I settled into a routine and did my best to get fit after my pneumothorax. One of the first things I did was order an exercise bike which I try and ride 3 or 4 times a week. If there was one tip that I’d recommend to anyone it would be make sure that you get some exercise in, no matter how little it might be. It’ll help you stay strong and will make a huge difference to your mental wellbeing.

Initially, I watched all the government updates and news bulletins religiously. However, I soon realised this was only making me feel more agitated. I limited myself to reading the BBC news website once a day and decided to get the rest of my information from the BLF website and email updates instead.

Life won’t be normal for us

Some people are taking the guidelines like the 1 metre rule, wearing a mask and regularly washing hands seriously. Others clearly aren’t. My wife, dad and I have had to make big adjustments to stick to the shielding guidelines. We haven’t come this far only to venture out and pick up the virus from someone less careful.

I won’t be looking to rush back to the life that I was leading before coronavirus and lockdown. For me, there are just too many risks and unknowns to be confident about returning to things like going to the pub, taking the tube into London or going shopping.

Ultimately, I don’t think I’ll feel 100% comfortable about going out properly until a vaccine is developed. But I can’t stay squirrelled away for ever. That wouldn’t be good for my mental health or fair on my wife or dad.

So we’re looking to slowly get back to doing things we collectively feel comfortable with. For us that’s been things like having my wife’s parents come and visit in the garden, going for walks when it’s less busy and ordering takeaways.

Taking each day as it comes

It’s going to be hard watching other people go back to relative normality. Especially when you see pictures of people doing things that could result in transmission levels rising again.

I’ve realised it’s not worth getting angry or worried about things that are beyond my control. Instead, I’m going to approach the coming days, weeks and months rather like I’ve had to approach life since coming to terms with my lung disease. I take each day as it comes, focusing on the things I can control and only taking risks I feel comfortable with.


Comments

I really related to your story Andy, thanks for sharing. Similarly, I went from running marathons until I was diagnosed with lung disease in 2018, now it's just about 5k for me too. It's been a scary time recently, I couldn't agree more with taking one day at a time, and not getting angry at others actions. It can really start to consume you. Good luck to you and your family, hopefully we will see an end to this soon.
Thank you for sharing your thoughts And experiences*
good for you, i have copd, good luck, regards john fairbairn
Hi it’s good to read your story & not feel alone . I also had to leave my family & have been with my mum . I am making steps to move back home but challenging with living safely with others & added worry of rising Cases does not help . Sometimes it feels so overwhelming but as you say it’s one day at a time & having a positive mind set & making plans that feel right for you . Best wishes to all .
Good on you, Andy! Wishing you all the best.x.
Inspiring and heartfelt given I too suffer with a lung condition and agree with the emotional comments Andy raised. As i have tried to re-join society i have had a period of anxiety and fear but an doing a little each day exercising in nature at quiet times of the day.
Well done Andy for your positive blog about your pulmonary fibrosis and how you have coped during lockdown. I admire your decision to move to a cleaner air environment which seems to have helped. you. I have relatively mild bronchiestasis and don't have to shield and am lucky to be living in Dorset also. I am in tune wth your recommendation for taking some exercise however small as it definitely helps to restore ones mental health. I hope you keep well in the future.
Well done indeed for taking the time to share your thoughts and suggestions for us all to enjoy and benefit from and we will have to make sure we are very careful about how we live our lives. Take care of yourself my friend. Kind regards, Peter.
Any help and advice in the meantime is very much appreciated. Everyday is a bonus for all of us.

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21 July 2020