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Image / Editorial

Coronavirus Diaries: ‘Living with cystic fibrosis means self-isolating for however long it takes’

02nd Apr 2020

Aoife Rafter is trying to stay grounded and grateful as she heads into her fourth week of self-isolation

“Day 24 of self-isolation and I think it’s safe to say that it’s been a rollercoaster of emotions already. I jokingly used the term ‘pre-pandemic’ this week. That scared me. I then began to wonder, ‘When the hell will we be truly post-pandemic?’. I catch my trail of thought before I get another rush of anxiety. I never could have imagined enduring a time like this, but then again, I’m getting used to feeling like an impostor in my own reality.

I can’t really go on describing my self-isolation experience without giving a little background detail on recent events in my life.

Due to health reasons related to my life-threatening lung disease cystic fibrosis (CF), I was forced to give up my lifelong dream of travelling and living short-term in Australia.

To cut a very long and traumatic story short, I arrived home to Kildare from Sydney on 23rd June 2019 and was diagnosed with cervical cancer that very day. Twenty-seven years of age, cystic fibrosis, and now cervical cancer. My heart broke that day forever.

As I am so young and have no children, I was lucky enough to do one round of IVF before my oncology treatment commenced. I had my radical hysterectomy the following September and 25 sessions of radiotherapy over Christmas.

Thankfully my treatment was successful and I am now cancer free. So I had been spending the past three months recovering, recuperating, attending several hospitals and clinics as an outpatient and, overall, just getting my life back on track. Until now.

It’s fair to say that I’m at a pretty high risk of contracting this deadly virus.

I decided to undergo self-isolation quite early as per CF Ireland’s advice. Not to mention the fact that my immune system is still recovering post-oncology treatment. So it’s fair to say that I’m at a pretty high risk of contracting this deadly virus.

I’ve been living back in my family home due to my recent health battles. I am beyond grateful that I have the opportunity to do so, but living with others only heightens my anxiety during this time. Every day we are updated on what exactly we should and should not be doing to limit our chances of bringing the virus into the house, and potentially putting my life in danger. Each time my family leaves the house, I am at risk of contracting this virus upon their return.

I’m somewhat used to having to amuse myself due to frequent hospitalisations and being home sick, but this is a whole other level. I’ve had to exchange coffee dates in the local cafes for coffee and voice-notes at home, Pilates sessions for Skype sessions, dates with my boyfriend for video chats and dinner dates with family and friends for dinner alone in my newly converted living area upstairs (thank God for the timing on that one!).

I am so thankful of the timing the universe chose for my cancer journey to commence and cease.

I then realise how trivial these sacrifices are, as I think of those going through oncology treatment right now and have no visitors for support. A time I can relate to all too well. I know how crucial support and the presence of loved ones is during a time like this. I then turn these anxious thoughts to feelings of deep gratitude.

I am so thankful of the timing the universe chose for my cancer journey to commence and cease. I have learned that I am braver and stronger than I ever knew, but I’m not quite sure how I would get through a situation like that. A cancer diagnosis alone is petrifying, anxiety-fed and life-altering, but cancer plus a global pandemic? My mind selfishly can’t go there.

Having CF involves a hefty daily treatment routine of physiotherapy, exercise, medications and nebulisers. This combined with the new and intense ‘Distance and Disinfecting’ regimen that I have now adopted is both exhausting and somewhat depressing. A constant reminder of how different I am from everyone else. I’m not safe in this new reality, my life is yet again, at risk.

This experience is having so many obvious negative effects on my life, but it also has many positive ones. It’s a constant merge of the two throughout my day. I mistake rushes of anxiety for COVID symptoms. I check my temperature twice a day to put my mind to rest. I turn to my Calm app for meditation support and sleep aids every evening. I burn incense until it can be smelled throughout the house. I wash my hands approximately 30 times a day. I walk one of our four crazy dogs a day.

I disinfect my living space three times a day. I wear latex gloves when I need to go downstairs. I cry twice a day. I water my new plants and order more bits to turn this isolation pad into some sort of a sanctuary. I’ve finally taken the time to write, a passion I have put aside for 10 years. I connect with others who are at high risk via my Instagram account.

Although I have had very little human touch and this will likely lessen still, I am consciously connecting 

We share our tips and our fears on this whole situation. I find great solace through these connections. It reminds me that we are all different but we are not alone. Loneliness is just a state of mind, it’s not my reality. Although I have had very little human touch and this will likely lessen still, I am consciously connecting and being touched in other ways, deeper ways, both with myself and others.

Ultimately my goal throughout all of this is to stay grounded and focused on what I have control over, and what I can be grateful for, to place my attention on the fact that as of this moment I am healthy. I know now better than ever, that this is all that truly matters.”

Aoife is a CF patient ambassador. The national fundraising day for cystic fibrosis — 65 Roses Day — takes place on Friday 10th April. Cystic Fibrosis Ireland has taken the decision to move their campaign online and are asking the public to support them by donating online at 65rosesday.ie
You can find her on Instagram 

Read more: From Singapore to Sydney: Women around the world tell us how coronavirus is impacting them

Read more: The hidden symptom of coronavirus that nobody’s talking about

Read more: Irish man compiles list of free services to keep you entertained during Covid-19 pandemic

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