Monday, January 23, 2023
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I have Raynaud’s Disease and am having to spend £450 on energy to keep warm

I’m determined not to suffer more than I have to (Picture: Samantha Priestley)

Pulling a blanket around my shoulders, I wrapped my hands around another hot drink.

Soon, the numbness and pins and needles in my hands caused by my Raynaud’s Phenomenon eased and eventually, subsided.

With weeks of cold weather stretching out in front of me, and worries about rising energy bills, I’m not sure how I’m going to manage my condition this year.

I was diagnosed with Raynaud’s about 10 years ago, aged 40. Raynaud’s is a problem with circulation in the body that sees sufferers dealing with numbness and pins and needles in the hands, feet, face, and sometimes other parts of the body.

For many sufferers, Raynaud’s can cause skin colour to change, meaning hands can turn white, though personally I don’t have this symptom. 

It’s not known what causes it, but triggers are stress, alcohol and, most of all, the cold. 

There doesn’t have to be much of a drop in temperature for my toes to cramp, and my hands to go numb. Whenever I have a flare-up, I can’t feel my hands and feet, so I can’t carry on with work or do regular tasks until it’s passed.

There’s no cure, and the onl;y thing to do is try and keep warm (Picture: Samantha Priestley)

Looking back, I was always the one who was cold at school, at home, and amongst my friends, when no one else seemed to be – that is, except my dad.

Dad suffered with cold hands that would go white at the fingertips in winter, and I always wondered what it was – but he never went to the doctor with it. He just ignored it; got on with things.

I wore gloves a lot, would always huddle close to a radiator in winter and would hold hot drinks, or sometimes even hot bowls of food, to warm my hands.

I didn’t think much of it, just that I felt the cold more than other people.

Over the years though, the pins and needles and numbness in my hands and feet got worse. I’ve been stood in queues when my feet have gone numb and I’ve had to try to hop about to bring some feeling back – something that only happens when I get in the car with the heater on and warm them up again.

When I started to feel tingling in my lips too, I decided to see my GP.

She asked me what made the pins and needles and the numbness better, and when I told her I put my hands on a radiator, she immediately said, ‘That’s circulation problems; you have Raynaud’s Phenomenon.’

Some people’s fingertips turn white (Picture: Getty Images/iStockphoto)
And it can affect toes too (Picture: Getty Images)

She told me there’s no cure or treatment for Raynaud’s and the only thing I could do was keep warm.

By that point, I’d thought there must be something seriously wrong with me, so I was a little relieved to learn it was a fairly common condition.

Thankfully, it doesn’t affect me at all in the summer but during the colder months, I use blankets when sitting watching TV in the evening, wear fingerless gloves at work, and I have the heating on constantly – I need to know that, in the cold, I can always put my hands on the radiator.

Normally, that’s easy to do – but this year, it’s proving harder. While everyone is struggling with the energy crisis and worrying about higher fuel bills, I’ve been trying to keep my heating off for as long as I can.

But I’ve been experiencing the symptoms of my Raynaud’s for weeks now and other solutions – like more layers and cups of tea – aren’t enough to keep them at bay. There’s only so many hot drinks you can wrap your hands around, only so many pairs of socks you can put on.

Among the triggers are stress and alcohol (Picture: Samantha Priestley)

The government isn’t doing enough to address the energy price problem. Energy companies are making huge profits while ordinary people suffer. People are freezing – with some opting to eat cold food rather than cook a hot meal, just to save on costs.

The government could offer more help to households out this winter, too. The £67 a month we currently get in discount as part of the government’s Energy Bills Support Scheme is welcome but doesn’t scratch the surface. And some experts warn that higher costs are predicted to stay in place for the next decade.

I’m currently spending £450 a month on energy, over double what I was spending this time last year. I live in north Sheffield, close to The Peak District, where we do get snow often due to the higher ground.

Sadly, I have no faith that the government or energy companies will do anything to make the coming months easier on ordinary people. It’s a scary time for all of us, and with the prospect of constant discomfort thanks to numb hands and feet, it’s a bleak winter for us Raynaud’s sufferers.

I’ve decided that, if I have to ride out this energy crisis with my Raynaud’s, I might as well ride it out in style.

I’ve invested in a heated blanket to wrap around me and I’ve switched off the radiators in lesser used rooms in the house, like the spare bedroom and the kitchen where the heat from cooking makes the room warmer.

I have a fluffy blanket for watching TV on the sofa in the evenings, too, and I fill up two hot water bottles at night to rest my cold feet on, which keeps my symptoms at bay for a while.

I’m determined to not suffer more than I have to.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk

Share your views in the comments below.


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