Voices from the UK's pulmonary hypertension community
Laura’s* son has pulmonary hypertension, and the family had to make difficult decisions to protect him during the pandemic.
“Dean* was 19 when it all started happening. At the time, I worked in a supermarket, and I remember a young man in the canteen talking about what was going on with the virus in China. He said, ‘it’s only a cough,’ and I said, ‘it might be to you, but I’ve got a son who could end up in hospital with just a normal cough.’ I remember that conversation clearly.
The day after Boris Johnson announced the lockdown, I had to go into work. I turned up for my shift and I kind of fell apart. How could I go to work in a supermarket with the risk of bringing it home to Dean?
My manager allowed me to go home, and I got a sick note from my GP so I could protect Dean. But my husband also works with the public, and in addition, he was a carer for his elderly mother – who also had carers going into her house.
What ended up happening was probably a bit extreme, but we took the decision to live apart to protect Dean and we didn’t come together again until June 2021.
My husband lived with his mother, I stayed with Dean, and that was our life.
As well as working at the supermarket at the start of the pandemic, I also worked for a bank, and luckily they both agreed to giving me 12 months unpaid leave so I could look after Dean. I ended up taking voluntary redundancy from the bank in the end because the whole thing made me realise we could cope on less income and there is more to life than work and routine.
We didn’t go out anywhere in those early days, and the Tesco delivery became the highlight of our week. We shut ourselves away and we found joy in nature in the back garden.
Dean kept himself busy by studying for a City & Guilds qualification and writing stories based on Doctor Who and Star Wars. He didn’t like hearing the news.
The only place I would go was to my dad’s to deliver his shopping, and the only time Dean left the house was when he had to go into hospital to have a new Hickman line fitted. I knew the time would come at some point, but I hadn’t anticipated it would be in the middle of a pandemic.
Whilst travelling to the hospital, I suddenly realised that life was continuing for most people while ours was still on hold. We were driving down the motorway and I saw all the lights of the other cars, with people going to work, and that’s when it hit me.
When restrictions allowed people to meet up again, my husband would come round, and we would sit distanced in the garden.
Dean and I started going for drives, going for picnics, and to the coast, but even filling the car up with petrol was like a military manoeuvre.
I think I was probably at my most anxious when the world opened up again. That was the worst bit.
We did start to go out a little but then the omicron variant came along, and we went back into our shells again.
Dean and my father (who was 86) qualified for a vaccine before me, but when I took them, I was allowed to have one too. I cried because it meant I could protect them both.
It was only after he had his second vaccination that my husband moved back in, 15 months after having to leave.
I still feel we did what was best for us as a family.
I returned to work at the supermarket in August 2021 and although it was a good thing, I was worried about what I might bring home. I’m still the only person there that wears a mask.
For me, getting back to work meant I felt like I was contributing to society again. Whilst friends and colleagues had stepped forward and worked through the pandemic, I had stepped back.
I did beat myself up a bit because I wasn’t contributing to society, but I didn’t have a choice; I needed to protect my son.
Dean is now desperate to get out and get living again. He’s desperate to get into lots of shops, and to eat out, and I am hopeful that we will get back to that. We are getting there, and I think we will make up for lost time.”
~Laura told her story to the PHA UK in the summer of 2022~
*names have been changed on request
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The lack of control is probably what I struggled with most
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