The lack of control is probably what I struggled with most

“The last couple of years have been particularly unpleasant. Most people, like myself, just want to see the back of it all. 

I’ve definitely found people’s reactions to me being ‘vulnerable’ difficult. I don’t like being vulnerable, and I don’t see myself as vulnerable. I don’t like a lot of fuss so I don’t mention PH if I can avoid it, and people being more cautious has sometimes been a bit overpowering. That, I know, is my own bad reaction to other people’s kindness. 

On the other hand, being labelled as vulnerable gave me a legitimate excuse not to do things [when restrictions allowed].

At the start of the pandemic, I was living with my husband and two grown-up children, and they were very worried about bringing the virus into the house – to the extent that my daughter moved out. 

Then when my son had to return to work in London towards the end of 2020, he moved in with his girlfriend because he was concerned about the potential guilt of bringing something home to me.

I found that quite hard. I had a problem with the fact that something outside of my control was controlling something so significant in my life.

I’m a bit of a control freak, so the lack of control is probably what I struggled with most through the pandemic. 

My way of coping, with the pandemic as with everything, was distraction therapy. 

I’m a bursar so I was able to work from home, and although I found that difficult, it kept me sane. If I had been in the house 24/7 with nothing to do, I think I would have gone mad.

I had a spreadsheet and everything, and because I’m an accountant by trade I worked out all the tax implications, and where the money would go depending how much I won. Distraction therapy is a big part of my life.

I was able to walk each day because we are very fortunate in owning a field at the back of the house. My aim for a good few years now has been to complete 5,000 steps a day and I was able to continue that. I’d walk lengths up and down the field, and if it was ever too wet, I would put Abba on the TV and do sidesteps instead.

Getting the 5,000 steps in each day gave me a sense of control. I have been known to do sidesteps next to the bed at 11.55pm, just to hit the target. 

Working, walking and my spreadsheet have all helped me over the last couple of years. 

It’s normally a two-hour drive each way to my specialist centre, but I can do a lot of the tests at home and send them the results. I’d be happy for it to continue like this.

Having the vaccinations has made a difference in terms of what I now feel able to do, but not necessarily what my husband feels I’m able to do. He’s very cautious and worries about me getting something. 

To be fair, in 2007 we were told I would only have five years, and as I’m now in year 16, maybe his caution has paid off. He has been very frightened of covid, it’s been a massive thing for him. 

I’m keen to get back to ‘normal’, to go on holiday and to eat freely in restaurants. But my husband is fearful for me and sitting on a plane with so many people would be a major issue for him. That’s why a private plane is listed on the lottery spreadsheet!” 

~Sarah told her story to the PHA UK in the summer of 2022~