Voices from the UK's pulmonary hypertension community
Julie Royle is 63 and lives in Manchester with her partner Kevin. She was diagnosed with PH in 2012.
“It was devastating to be told I was in a group that needed to shut the doors and windows and stay inside. I didn’t even go in my garden to begin with.
It was as if the whole world just shut down. The news was showing clips of every country at a standstill, and the grass was growing, and the fish were swimming because we had stopped polluting the earth.
I was getting more and more fretful being in the house. It brought back the fear I had when I was diagnosed with PH, when I didn’t know what the future was going to be.
It took me right back to day one in terms of thinking how vulnerable I am, and that I might not make it if I don’t do exactly what I’m told to do.
I didn’t think anything could be worse than my diagnosis. I thought I had been down that black tunnel, but it brought it all back and I wasn’t ready for it.
I felt I had even less control this time. With my PH I could learn what was best for me and how to live with it, but with the pandemic, all liberties were taken away and I had to be a robot.
Even my son and daughter were worried about going out in case they killed me, so I was thinking ‘there’s no chance for me’.
What was going to happen to me and Kevin? It was like our world had ended. When you heard that there were millions dying around the world, it was hard to see a way out of it.
We watched the daily briefings, and they were terrifying. I thought it was the end of my life, and I couldn’t see a way out of it. It all frightened me to death.
I contacted the PHA UK for help and had some telephone support. On the day that shielding ended, I took part in a fundraising walk for them, around the lake at my local park. I couldn’t believe how much better that walk made me feel.
Things got a bit better, until everything shut down again later in 2020.
Every time there was another lockdown, it felt like we’d taken five steps forward then ten steps back.
The first lockdown nearly destroyed us. We went downhill mentally as well as physically and at some point, my brain kicked in and I realised we had to do something about it. I thought if we didn’t die of covid, we’d die out of inactivity or fear.
FaceTime was a lifeline. I used it with family and friends, and we were all checking up on each other every day.
I did a lot of cooking, and we decided to redecorate the house. Online shopping made a massive difference because when things came to the door it felt like we were still part of the world, and I spent a lot of time sourcing things like paint online.
I started doing my own six-minute walk tests from my front door to the back of my living room and used my house as a gym as the utility room is in the cellar, so I have to climb stairs to do things like the washing.
All of this helped the second lockdown pass quite quickly and we found our fighting spirit.
When the vaccine was introduced, it finally felt like we could start living again. It was the only thing that was going to bring us back to the world.
We’ve now been on short breaks in the UK, and we’ve been abroad, but we’re still careful in daily life. We avoid crowds and I still go out with a mask and gloves. I’m very particular, and I won’t touch a door handle without a tissue.
I was like that before covid, but it’s ten times worse now. I’m happy to keep up with any vaccines that come out which mean we can live a better life, but I don’t think I will ever stop taking precautions because I think it will be here forever.
I’m an optimistic person and I can’t believe how much I dropped at the beginning. The government scared people to death and they need to be sorry for that.
The government led it and the media fed it. They made even sensible people think that it was the end, and I don’t think I can forgive them for that.
I’ll never be told again how to live my life and will make my own choices. The key thing for both Kevin and I now is that we want to try and live while we can.”
We initially interviewed Julie over the phone, in May 2022, where she shared the experiences above. A few weeks later we visited her at home, to record the video below.
Life is short, and that is exactly what the last couple of years have shown us
The lack of control is probably what I struggled with most
I wasn’t willing to go back to work and put her in danger
Every corner I turned during the pandemic was scary, but my specialist centre gave me hope