Voices from the UK's pulmonary hypertension community
Mark* lives in Hull and is a carer for his wife, who has PH. He gave up his job to protect her during the pandemic.
“I’ve been married to Sue* for 37 years and she was diagnosed with idiopathic pulmonary arterial hypertension in 2012.
The last couple of years have been fairly rough. In March 2020 I was a full-time school bus driver, and suddenly all the schools closed.
The company that employed me did what the government asked and put everybody on furlough, so overnight, I lost all the friendship of my colleagues at work.
I found it really hard. The first few months [of the pandemic] were dreadful and I think I probably caused Sue a lot more grief than I realised.
Work was a big part of my life. Home time was loving and caring for Sue and making sure we had good days out when we could. My downtime from that was going to work.
My respite from care was a 12-hour shift on the buses and I loved it.
I’d know every passenger that boarded the bus and although they were only short chats I’d have with them, I might have them five days a week. And then suddenly, it disappeared.
I didn’t realise what Sue’s life was like without me in the house.
It soon became apparent how much she had changed her lifestyle to enable her to do things, and how difficult her life was, and there was me complaining about not going to work.
Everything came as quite a shock. I knew Sue was ill, but not how much it had changed her life.
I hadn’t really picked up on what was happening when I was at work 12 hours a day, but it was working that had kept me sane.
Life was very difficult in the first few months of the lockdown. But by keeping me going, Sue got respite from herself. It gave her a purpose to keep me happy, rather than the other way around.
She was always bolstering my feelings, always chatting, and together we totally re-did the garden. She was using that, I gathered, to keep my entertained.
Sue came up with the ideas and I took care of the practical side. We built raised beds so she could continue gardening, as one of the things I noticed when I was at home more was that she had to sit on the floor to do the weeding.
Whilst she was shielding, Sue wouldn’t leave the house or garden and wouldn’t speak to the neighbours. She wouldn’t go within 100 feet of anyone because of what she’s got.
I had to support my father-in-law as well as Sue because he was in his 80s and living alone. He didn’t take it as seriously as he should have done, and he used to get very upset when I would come into his house wearing face coverings and gloves to deliver his shopping. I was doing that to protect Sue.
When I got back Sue would stay in the bedroom whilst I showered and changed my clothes, which would be washed each time. Even now, Sue insists we wipe down all the shopping when it comes in and leave it on the side for a day before we put it away.
I am now fully retired from the bus company. After the first six months of the pandemic, we had a long discussion about how we might be able to make it safe for me to go back, but Sue was, rightly, still very concerned about it.
If I went back to work, I would have to live upstairs in the house and Sue would have to live downstairs, and I didn’t marry her to split our lives into two separate entities.
I wasn’t willing to go back to work and put her in danger. I took early retirement in September 2020 and to enable me to do so, we had to remortgage the house.
We are both now fully vaccinated, and it has given me more confidence. I would take the vaccine today, tomorrow, or any day you want to give it to me.
I’ve started playing a bit of golf again and recently, for the first time in two-and-a-half years, Sue and I met some friends outside for a meal.
We have started going out a bit more, but we are still very conscious that covid hasn’t gone away. Sue still can’t go out and live because if she gets it today, it’s no different from getting it two years ago. It’s still crippling.
Things haven’t really changed from a vulnerable person’s perspective. Society might think it has changed, but it hasn’t.
We are both concerned about Sue getting covid. Maybe it’s selfish, but I didn’t marry her for her to die.
If I could find a way of going back and making it possible for me to have continued working I would, but we are happy and content in our own environment. We do what’s necessary, and we just get by.”
~Mark told his story to the PHA UK in the summer of 2022~
*Names have been changed on request
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