A Day In My Life – What It’s Like To Live With Cystic Fibrosis During A Pandemic

Welcome to my life with cystic fibrosis...

Ashe Spillane is a makeup artist from Ireland who lives with cystic fibrosis. Like the rest of us, Ashe is isolating at home, following the necessary guidelines on lockdown as outlined by the Government. The only difference is that Ashe is classed as a vulnerable person or at “high risk” due to cystic fibrosis.

Making this uncertain time even more daunting, people with cystic fibrosis are categorised as extremely vulnerable to the coronavirus and so, have to take even extra precautions to mind themselves during this difficult time.

People with CF have been advised to cocoon over the past couple of weeks. Similar to people over the age of 70 and with other high risk diseases, this means they’re not to leave their houses, even to go out shopping and they’re to minimise contact with everyone, including their families.

Here, Ashe has given us an insight into a typical day for her since lockdown has begun. 

7am. My arm pulsates to my Fitbit wake-up call. I hit snooze. After spending the night uncontrollably coughing and having difficulty breathing, I deserve a lie-in.

I drag myself out of bed at 8.30am. Some morning skincare to feel fresh and the daily routine begins. A glass of water with PPI (stomach acid reduction tablet) for starters, then two inhalers, two nebulisers, chest physio and a rainbow of tablets equivalent to half a pack of skittles.

Welcome to my life with cystic fibrosis (CF). I was automatically screened after birth as my eldest brother David has CF too. Hospitalisation was rare growing up as our parents worked hard to keep us well.

Fast forward 23 years and a trip to Thailand, I was knocked out. Thanks to an infection, I went from having lung function of over 80 per cent to 28 per cent. Recovery was hard and I’ve never been able to regain the lung function lost – I’m currently at 60 per cent.

Come 10:30am, two hours later and my treatment regime is finished. It’s now time for exercise – usually an hour’s walk or some time on the treadmill. Without physical activity, I can experience a 15-20 per cent drop in lung function. This workout is then followed by 30 minutes of HIIT (high-intensity interval training) or weights. Finally, it’s breakfast time and 4-6 more tablets to help my pancreas digest food.

I’ve been isolating due to COVID-19 for six weeks now, so I try to maintain productivity each day – with an episode or two of Grey’s Anatomy thrown in! Every morning we open the windows and disinfect all surfaces – the house has never been so clean!

My dad has multiple sclerosis so he’s in isolation too. As a family, we are taking every precaution we can. Our house is off-limits to all – even my little nephew, which is super-hard. Mom only leaves the house for essentials. She collects the shopping from Tesco every two weeks and, on the rare occasion, pops to the shop if we’re stuck for milk.

The day goes on, and with each meal or snack comes another round of tablets. Around 7pm, my nightly treatment routine starts, which is my two-hour morning routine all over again.

Then, after that’s done, it’s time to relax and unwind with some music and my 11-step skincare regime. I’m a makeup artist so it’s in my blood!

Finally, at 11.30pm, it’s bedtime. I’m hoping for a good night’s rest. Imagine what it’s like on days when I go to work!

Ashe Spillane is a patient ambassador for Cystic Fibrosis Ireland’s (CFI) 65 Roses Day.

Unfortunately, CFI had to cancel its 65 Roses Day collections earlier this month on Friday 10th April due to COVID-19. This is its national fundraising day and was targeted to raise €200,000 to help fund essential supports and services needed more than ever by people with cystic fibrosis. However, you can still help them by making a single or monthly donation to Cystic Fibrosis Ireland by clicking here

You can also see current CFI updates on the coronavirus by clicking here.  

For anyone looking for cystic fibrosis support during this time, you can ring CFI by calling 1890311211


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