Joanna and her husband Mark built a life together in Somerset. He worked full-time as a postman and spent his time tending their garden, growing vegetables and flowers, while she has worked in the same nursing home for 13 years. The couple, who recently celebrated their 22nd wedding anniversary, enjoyed a busy and active life.
However Mark lives with ME/CFS and, over the past two years, his condition has progressed.
“Mark is now unable to work at all,” Joanna says. “He lies in bed and occasionally manages to come down the stairs for an hour.”
For a long time, the couple felt they were facing the disease alone. “We didn’t even know there was research going on until I found ME Research UK on Facebook,” Joanna explains. “We had felt so isolated dealing with it alone.
“But this shows me that we are not alone – and something is being done to learn more.”
Inspired by that discovery, Joanna decided to take action herself. Wanting to raise awareness of the realities of living with ME/CFS and supporting the search for answers, she signed up for Walk for ME and set out to raise funds for research.
What began as a fundraising challenge soon became an opportunity to spread hope and to connect with others affected by the disease.
On the day of her walk, Joanna was joined by Mark’s sister Helen and two colleagues from the nursing home. Accompanied by dogs Gertie and Daphnie, the group set off towards The Bishop’s Palace in Wells, where they stopped for refreshments at the halfway point.
There, they had an unexpected encounter that left a lasting impression.
“A lady came up to us to say thank you for raising awareness,” Joanna recalls. “She had lived experience with ME. It was good for us to see someone that has come out the other end, as she had been in bed for two years.”
The conversation gave Joanna something precious to take home to Mark: hope.
“I actually found the day quite emotional. I think it was because this situation has become the norm, and on this day I was reminded that it’s not.”
The support she received from family, friends and colleagues has also been overwhelming.
“People’s generosity has amazed me. From family to people at work. I didn’t think I’d raise anywhere near my £500 target. But just today, after I put up a poster at work saying how close we were, someone has donated and we’ve reached it!”
Through her fundraising, Joanna has raised vital funds for the charity. But she has also helped shine a light on the realities of living with ME/CFS – and, in doing so, she has reminded others affected by the disease that they are not alone.
Thank you, Joanna. Give our best to Mark.
