Bedwyr's story: "Living with fatigue means listening to my body"

Bedwyr Gullidge, 37, from Pontypridd in Wales, was born with a congenital heart condition. He reflects on the challenges of living with fatigue. 

Bedwyr Gullidge was born with holes between the four chambers of his heart, a condition called atrioventricular septal defect. He now has permanent atrial fibrillation and early symptoms of heart failure.

“I had three open-heart surgeries as a child, and it was always tough getting back on my feet after the op.

But being diagnosed with atrial fibrillation in my 20s was a whole new challenge. I started to notice I could not do as much and felt washed out towards the end of each day. I compare it to the feeling of walking against water in a pool, because for me, just walking can be draining.

At that time, I was working full-time in a cinema, spending all day on my feet. I was needing to drive there more often because the 30-minute walk would exhaust me before even starting work.

In the years that followed, I learned to listen to my body. In my job as a lecturer in cardiac physiology at Swansea University, I have the option to work from home some days, depending on my lectures. I also plan each day carefully. If I have three lectures, I’ll take breaks between and head home early to recover.

It helps to be open with your manager. I might ask, ‘I’m getting worn out doing X, Y and Z. Can I just concentrate on X and Y for now?’

The same applies to family and friends. I’ll say, ‘Can we take a break rather than continuing shopping?’ I try to spend time with people who appreciate my limits and my needs.

I still like to challenge myself but I'm mindful of when to stop

I still like to challenge myself but I’m mindful of when to stop. On a recent electric mountain biking trip, I became aware that my legs were exhausted and I felt like my heart rate was really high. So I stopped. If I’d pushed on, I would have come off the bike.

When I realise there are things I cannot do, it can be demoralising. But in those instances, I focus on what I can do, and ask myself, ‘How can I build up to that? Can I do something related?’ It also helps to know that I’m not alone in this; other people have gotten around the same challenges.”

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