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'Cystic fibrosis can be a little overwhelming - there's never a day off'

Cystic Fibrosis is Ireland’s most common genetically inherited disease and Alannah Shesgreen has learned to live with her diagnosis and thrive. Now more than ever she is grateful she’s well enough to live her best life

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Not holding back: Alannah Shesgreen is training for a marathon

Not holding back: Alannah Shesgreen is training for a marathon

Not holding back: Alannah Shesgreen is training for a marathon

Social distancing, self-isolation, hand hygiene. All too familiar buzzwords that have infiltrated our daily conversations in recent weeks.

Many reading this will have had their entire life structure disrupted by an invisible enemy. Personally, I haven't seen friends face-to-face in weeks, my hands are washed raw and even leaving the house for an "isolated" walk induces that small bit of anxiety that I could come across a wide array of bacteria, all threatening to hospitalise me for weeks on end.

For most, these are entirely new thoughts and scenarios. For me, not so much. The precautions people are now taking in a Covid-19 world are ones you come to know at a young age living with cystic fibrosis (CF), no matter how healthy you may be.

My first recollection of being in a hospital is a bit hazy. I can't tell you my age, why I was there, or even what hospital. I just remember the green linoleum flooring and a feeling of pure intimidation.

The feeling never really goes away. However, as you grow, different emotions come into your head. As you learn to take control of your health, appointments become less overwhelming. That "hospital smell" no longer haunts your clothes for days. And once in a while, you get a bizarre pang of nostalgia for the children's hospital you knew so well.

Growing up with CF, I found it easy to be entirely oblivious to any difference between myself and my peers.

True, I could tell other seven-year-olds what a pancreas did. And, yes, I found myself shocked when classmates would tell how they could get up at 8am and be out the door half an hour later.

For me, I would spend roughly an hour morning and evening managing my CF, from nebulisers to inhalers, from chest physio to taking meds. Time which was extended by my CF-related diabetes diagnosis in 2017.

But having a certain routine built into your life from a young age means you accept all of that as just the way things are.

A majority of the girls I went to primary school with, I also went to secondary school with. It meant that I was mercifully spared many a "why do you take those pills?" or "what were you doing at the hospital?" questions. These questions would become commonplace later in college.

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When you are younger, and if you are lucky enough to have parents like mine, you know you can rely on them to gently remind you to do treatments.

But there does come a point where you are drop-kicked into the "real-world" and become accountable for your own health.

On completing my Leaving Cert, I decided to study Law and Accounting at the University of Limerick. Despite getting chucked into St Vincent's Hospital in Dublin for weeks at a time each year since starting - most recently for three weeks in February - I have pushed myself to keep my grades up and I am on track to graduate with a First Class. But don't hold me to that!

In recent years I have spent time figuring out what exactly having CF means. I learned to live my life according to my rules and not according to an illness that could consume my every waking thought.

I have also learned to fully accept my CF. One of the best summers I've had was in London. With the exception of only those that really needed to, no one knew I had CF. My treatments could be artfully concealed, and a cough brushed off as a summer-time allergy. Silly as it sounds, it made it easier for me to feel like an actual person who didn't need to be tiptoed around.

I wasn't ashamed of my CF, but at the time I wasn't ready for it to be a part of me. It took two hospital admissions to acknowledge that it will always be part of my life. If I want to get to know people then people need to know me, CF and all.

Every now and again, CF does become that bit overwhelming. There's never a day off. You don't get to take the same mundane risks your friends do. And even at peak health you are constantly aware this could change any second and so you work and work to keep yourself that way.

Whether it's checking your blood sugar up to eight times a day, taking upwards of 30 pills in a 24-hour period, or simply getting enough sleep, life demands a lot.

Whilst I don't wake up every single day bounding out of bed intent on making the day extraordinary, I do work to make sure I can look back on life and say that nothing held me back.

Getting me to the point today - interning at a leading law firm, albeit remotely right now - has taken years of commitment from not only me, but my parents, doctors, nurses, teachers and many more. I don't intend to waste that effort.

I love performing and so I joined the drama society at university. In fact, I recently took part in a production of Chitty Chitty Bang Bang by the Cecilian Musical Society at the Lime Tree Theatre in Limerick. It was a huge thrill.

But perhaps the best thing to come from my taking responsibility for my health is a love of running. With exercise key in maintaining CF health, and what with me not doing enough of it, I needed to change. Now I am getting set for my first marathon taking place in Belfast, which has been rescheduled for September.

My training right now consists of running up and down the same stretch of quiet road near my house four or five days a week, but all within the 2km government Covid-19 exercise restrictions, of course. I am also focused on building up my strength and mobility with regular light weight sessions at home. There have been bumps along the way due to injury, but I will get there. So, it might take four hours, or six, but running, walking or crawling, I am determined to cross that finish line.

Every day I wake up - coughing or not - grateful. Grateful I have so many people I care about and who care about me. Grateful I am well enough to give my life the best go I possibly can. And grateful I decided to find a way instead of an excuse. I am my CF, but I am also so much more.

Alannah Shesgreen is a patient ambassador for Cystic Fibrosis Ireland's (CFI) 65 Roses Day. Unfortunately, CFI has had to cancel its 65 Roses Day collections on Friday, April 10 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 at this time. Please support CFI on 65 Roses Day, Friday, April 10, by donating online at 65RosesDay.ie

 

What is CF?

⬤ Cystic fibrosis (CF) is an inherited chronic disease that primarily affects the lungs and the digestive system.

⬤ A defective gene causes the body to produce thick mucus that clogs lungs and obstructs the pancreas, stopping natural enzymes from enabling the body to break down and absorb food.

⬤People with CF experience a range of symptoms including frequent lung infections, persistent coughing, wheezing and shortness of breath, along with poor growth and weight gain in spite of a good appetite. Over time people with CF accumulate significant damage and scar tissue in their lungs which leads to end-stage lung disease requiring a double lung transplant if possible.

⬤ Ireland has the highest incidence of CF in the world, with almost 1,400 people diagnosed with the disease.

⬤ Figures from the Cystic Fibrosis Registry of Ireland Annual Report 2018 show that the counties with the largest numbers of people with CF are Dublin (327), Cork (167), Limerick (73), Tipperary (60) and Galway (59).

⬤ In 2018, there were 1,129 hospitalisations for 529 people with CF.

⬤ In 2018, the median age of a person with CF was 21 years, though survivability for a growing number is now predicted into their 30s and 40s.

⬤ In 2018, there were 140 individuals with CF aged 40 years or older.


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