Written by Jo Willacy
Health journalist Jo Willacy has cystic fibrosis (CF) and CF-related diabetes. She’s one of the 1.5 million in the UK with a serious illness who has been advised to remain at home for a minimum of 12 weeks due to the coronavirus pandemic. Here, she tells Stylist how it really felt to get the message – and the realities of her new isolation.
My phone hasn’t stopped pinging. Messages so kind, I’ve been reduced to tears. ‘I hope your relentless positivity keeps you going,’ said one.
But there was one text I knew was coming. The ‘official’ one from the government, instructing me to stay inside for the next 12 weeks.
A friend, who’s had a lung transplant, got hers first. I was jealous. Ludicrous, I know. How were they being sent? Alphabetically? I’d be way down the list. By severity of illness? I might be promoted.
My text finally arrived at 3.09pm this Monday. Can your heart sink while simultaneously feeling a sense of relief? That’s what happened to me. The message, from the NHS Coronavirus Service, said I’d been ‘identified as someone at risk of severe illness if you catch coronavirus’.
It gave strict instructions. ‘Please stay at home for a minimum of 12 weeks. Home is the safest place for you. Staying in helps you stay well and that will help the NHS too. You can open a window but do not leave your home and stay three steps away from each other indoors. Wash your hands more often, for at least 20 seconds.’ It finished with a link for more advice for the ‘extremely vulnerable’.
I’d been prepared for this; having been glued to social media, the UK CF Medical Association had forewarned me. But as anyone else in the group of 1.5 million people would agree, it’s a frightening place to be.
The pandemic’s speed at taking hold has been mirrored by my sky-rocketing anxiety. Scratchy throat? Headache? Many a night I’ve convinced myself I have both.Despite living with CF all my life, and losing my sister, Kate, to it when she was 28, I’ve never suffered from anxiety. My husband, Gavin, jokes I cope with anything CF-related, but god forbid I stub my toe!
People with CF have lived for years with the fear that the rest of the world is now facing. Due to cross-infection, we cannot mix with each other – think Five Feet Apart. My bridesmaid’s daughter has CF. Libby, 12, and I have never been in the same room. Our friendship is built on waving through windows or FaceTime. Last week, my sister-in-law dropped food to our doorstep and chatted through the window. It was all too familiar.
I’ve always considered myself lucky. I have CF, but I’m 47. My parents were told that I might not make the age of eight. Growing up, the average life-expectancy from someone with CF was 30. Now, according to the CF Trust, ‘half of all babies born with CF today are expected to live to at least their mid-40s.’
For two years, I’ve needed oxygen to walk or exercise. Then, in December last year, I swallowed the first dose of new daily pills that should change my life.
Trikafta (the Triple Therapy) is not yet licensed here in the UK, but I take it via a Managed Access Programme for Compassionate Use, having had a lung function lower than 40% for the last 10 years.
Five weeks into taking the pills, my lung function increased from 34% to 41%. My head-turning chesty cough vanished, and my oxygen requirements halved. I had more energy than I knew what to do with. And then coronavirus hit.
Now I’m confined to my house until mid-June – at the earliest. I can’t even go for a walk. No one can step inside the front door.
A line in The Text saying I could open windows sent me into meltdown. Did that mean I couldn’t go in my garden? Friends on my ‘CF Solidarity’ WhatsApp group were confused, too. Normally, my CF team would answer any worry but now they’re only responding to emergencies. I get that. Thankfully, my Mum spotted in the instructions that I could go in a ‘private space’, as long as I stayed two metres from neighbours.
I’ve worked from home for years so no change there, but my garden now feels like a lifeline. This honeymoon period of ‘House Arrest’ has been bearable, thanks to the sun and nightly Zoom socials.
I’ve done a ballet barre workout in my garden, I’ve hula-hooped, I’ve weeded and I’ve danced with Strictly pros on Instagram Live (come on Aljaz; I’m waiting!). Give me a week of rain, though, and this positivity will wane. It will, at some point, regardless.
Getting a slot to have food delivered is impossible. I’m fiercely independent so asking our neighbour to shop for us is hard, but I have no choice. I’ve called the Sainsbury’s number for ‘vulnerable customers’ but can’t get through. Libby’s mum rang it 200 times on Monday.
When Gav was still doing our shopping, my anxiety was stifling. Last week, having listened to too many news bulletins, stress beat me. ‘I’m terrified,’ I sobbed. ‘I don’t want to die from this.’ Now Gav’s fully self-isolating, I’m calmer. He can still go for a walk – social-distancing to the point of paranoia.
I’m not afraid of dying from CF. I expected to die ‘a good death’, in a hospital ward I call my ‘second home’, with NHS nurses caring for me who I’ve known for 25 years, and Gav and Mum holding my hands. If I get the virus, that’s no longer guaranteed – that’s what scares me. People are dying from coronavirus without their family and with NHS staff pushed to their limits.
I’m staying in for those staff. I want them there to be able to care for me, and countless others, again when this is over.
Images: Getty, courtesy of author, Unsplash
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