Helen Lewis's Story
“My Raynaud’s has definitely gotten worse this year. I used to have an attack a couple of times a week, particularly if I was outside in the cold, but now it happens every day, even in my own house.”
Helen Lewis, an associate university professor from South Wales, was diagnosed with Raynaud’s in 2017. Following subsequent tests, specialists confirmed her Raynaud’s was secondary and she was also diagnosed with scleroderma.
Helen is supporting our Raynaud’s energy campaign, which is calling on the government to ensure heating remains affordable for people with Raynaud’s whose health depends on staying warm. She says that, even though she earns a good income, she is worried about heating costs and is actively trying to reduce the amount she uses.
“My Raynaud’s has definitely gotten worse this year. I used to have an attack a couple of times a week, particularly if I was outside in the cold, but now it happens every day, even in my own house. We haven’t even had any very cold weather yet.
“Although I earn a good income, I’m still worried about the cost of heating. Last winter, I’d have put the heating on from September and have it on quite regularly, but right now, I try not to put it on, and if I do I only have it on for an hour or so a day at the most.
“I work from home several days a week, so I’ve made sure my computer is in the sunniest spot in the house. Other days, I’ll compare the cost of travelling to work to the cost of heating my home, and if I know the weather is going to be particularly cold, I might decide to travel to the office that day.
“I’ve also started to close off rooms, use an electric blanket and go to bed earlier, but it’s really difficult because when you’ve got a Raynaud’s attack coming, it doesn’t matter what you do to try to stay warm, it’s going to happen regardless.
“If I have a particularly bad Raynaud’s attack and my fingers and toes go completely numb, I can't manage simple household tasks like making a hot drink, opening a door or using the computer. There are lots of things I can't do until my hands have warmed up.
“I know I’m in a privileged position with my regular income, but I do think there's a squeeze on middle-income earners, particularly people like me with underlying health conditions, who aren't eligible for lots of cold weather benefits and things like that, it means the energy hikes are unaffordable.”