‘Petrified’ nurse with rare conditions says she’s terrified of ‘dying cold and alone’

A woman with a rare health condition is scared of “dying this winter from the cold and becoming another statistic”.

Susan Mathews has been told her energy bill will triple this winter.

She lives with a disorder that affects her body’s ability to control her temperature, leaving her feeling extremely cold all year round and even dresses in winter clothing to keep her body warm.

Susan, of County Armagh, Northern Ireland, also relies on an electric wheelchair to move within her home and, in addition to oil-fired heating, uses electric blankets to stay warm.

The 66-year-old, who worked as a nurse for seven years until her condition forced her to quit, says she has even cut back on food essentials such as fruit.

But even cutting back has not stopped her fears that she will struggle to make ends meet.

She said: “We’ve seen a lot of statistics over the past few years and I don’t want to be one of them who dies from hypothermia. I don’t want to be another statistic.

“Both the oil and the electricity providers told me they went back to what I was paying at the coldest period last year and said it would now triple. That shocked me to the core.

“Last winter I was just about keeping my head above water. Now I don’t know what I will do. I am petrified.

“With my grocery shopping, I’ve already given up fruit – and it’s my favourite thing to eat. But now with the situation I’m in, it doesn’t count as an essential anymore.

“I just need to stay on track with only essentials.”

Susan suffers from three rare conditions: Arnold Chiari Malformation, Syringomyelia, CSF Leak Cerebro Spinal Fluid Leak, which all affect fluid in the spine.

These, coupled with injuries from multiple brain surgeries, have left her body unable to regulate its temperature.

Susan shared her story during Chiari Malformation Awareness Month to highlight those dealing with a rare disease this winter.

She said: “My condition means I am unable to keep my body warm.

“Now the only thing that is a complete necessity is my electric blanket. I’m wrapped up in that all the time.

“I remember last year sobbing and sobbing on a daily basis because I was so cold.

“I’m known for staying positive, but it’s becoming more and more of a struggle.

“The heat to me is vital. I’m afraid I will be someone who is going to die in the cold and alone.

“I wish someone else could tell me what else I could do to keep myself warm.”

Susan has also recently had a fall which has lessened her mobility on her right side, meaning she has had to rely on her tumble dryer recently and her energy bills will increase as a result.

She currently volunteers at a charity helpline for people with her condition, Syringomyelia Arnold Chiari Association (SACA), and says the fear is widespread from other callers.

Susan added: “They say stress is a killer and I can see why. I’ve had people on the phone telling me their oil will run out by Christmas.

“People are really, really worried about what is going to happen to them. It doesn’t help that we don’t have a Government here at the moment.

“And there’s so many like me out there. I don’t know how we’ll carry on.”

Around 60 per cent of homes in Northern Ireland use home heating oil.

Earlier this week home heating oil customers in Northern Ireland are to get a one-off payment of £100 to help with rising energy costs.

Susan said: “I haven’t received support. It angers me that nothing is being done.

“Last year I felt lost and forgotten about. Covid didn’t help matters. I speak to the Cedar Foundation which helps me talk to people.

“My family are my greatest support network. I don’t know where I would be without them. But I am awfully worried about keeping myself warm this winter.”