The peaks and troughs of exercising with PH

The peaks The peaks and troughs and troughs

Emma Ferguson lives in Northern Ireland and was diagnosed with idiopathic PAH at the age of 16. The English Literature graduate enjoys writing about different aspects of life with pulmonary hypertension, and here, she explains how she makes exercise work for her.

This week, and really this month, I’ve been exhausted. For me, PH exhaustion has a creeping feeling.

It starts with a cold or a particularly tiring few days. The longer the days, the deeper it sets in – so that it’s going to require more and more rest to get rid of it.

So often things don’t stop soon enough. Pressure to meet deadlines and outside forces means that other things slide in their place, usually things in my personal life; pleasures like reading or meeting friends.

Work-life balance is difficult at the best of times, but when unpredictable health is added to the mix, prioritisation becomes even harder but also even more essential. Another thing that gets pushed aside when I’m getting exhausted is exercise, although unlike my other examples, exercise has never really constituted ‘pleasure’ for me.

When I was at primary school (and undiagnosed) I was simply the sickly kid who couldn’t do sports and was regularly off school. By secondary school, aside from mandatory PE classes, I’d written off regular exercise entirely.

The Duke of Edinburgh’s (DofE) Award was eye opening for me. An enlightened attitude to participation espoused by the DofE charity meant that I was able to avoid the heavy rucksack-wearing, incline-walking expeditions mostly associated with the award – and instead travel in a canoe.

This required a lot of additional training for safety, but it was something that I could do.

Over the course of four years, I completed my bronze, silver and gold awards in a sport that allowed me to keep up with my peers. The upper body and core strength required to manoeuvre the canoe was something I was able to build up without becoming too breathless. Completing DofE still relied upon me being relatively well before I set out, but the actual exertion was manageable.

By the time I was at university, walking had become my best friend. We all know the advice about PH and exercise; walking is perfect for people with PH and ideally, we should walk while breathless so long as we can maintain a conversation. Walking everywhere to save money improved my fitness like nothing else. I walked

“Exercise and I will never be best friends, as we don’t meet regularly enough”

of exercising with PH

everywhere; if it was 40 minutes or less, I would walk it. This was great, but only while I was well.

While at university I tried lots of different sport societies from ultimate frisbee where I couldn’t keep up with the running, to Brazilian Ju Jitsu where the intensive warmups at the start of the session were too much. I also tried Park Run [nationwide weekly mass participation 5km events] where well-meaning people not aware of my hidden disability encouraged me to keep going – when really all I needed was to stop.

I’ve noticed, as an impact of PE at school while undiagnosed, that high intensity exercise classes aren’t really for me. Even though class teachers are usually very understanding about my disability when I inform them of it, I still feel an undue pressure to keep going and match the pace of the class.

Yoga classes are the exception to this rule. I got to attend a series of free sessions while at uni, aimed at improving mental wellbeing. They were gentle, focused on breathing and holding stretches. While I found the breathing elements the hardest, there was something about the more contemplative setting of a yoga class that meant I wasn’t as concerned about not doing things properly or stopping if necessary.

When COVID-19 arrived all these classes stopped and my general predisposition against video calling meant that online classes weren’t for me. So, I started using an app called Leap Fitness instead [see page 7 for Emma’s review of this app]. Read Emma’s review of the exercise app ‘Leap fitness’ on page 7.

Emma taking a break on one of her walks

Emma and her mum

Emma writes regular blogs for our lifestyle website, www.phocusonlifestyle.org If you would like to share any aspect of life with PH for our magazine or websites, please email media@phauk.org

I don’t know if regular exercise planning will ever be possible for me, but I have learnt that much of what I’ve mentioned relies upon me making the right calls early on.

It often feels like with PH the best thing you can do is pre-planning; prepare for all eventualities.

Exercise and I will never be best friends, as we don’t meet regularly enough, but better overall awareness about my exhaustion can make us better than casual acquaintances.

Last month I climbed the Stairway to Heaven trail in County Fermanagh and after regular breaks, made it to the top. This month, while I’ve been exhausted, walking has been the limit for me.

If I can shake off the old ideas I had at school about what ‘good’ exercise looks like, and tailor what I can do to fit my condition better, then hopefully there are more peaks than troughs ahead.