It’s Raynaud’s Awareness Month. Daisy Leverington talks about her relationship with the mysterious Ray Nord.
When I was 12, my fingers and toes started to die. They would turn purple, then entirely white, as the blood simply stopped flowing inside them. It wasn’t particularly painful as they changed colour, but when the blood started to pump back into them after 20 minutes or so, it was like someone shoving needles up the length of my digits.
As I was only 12 and the internet hadn’t been invented, I simply assumed I was slowly dying. I wondered if I would make it into one of my Dad’s paranormal phenomena annuals as a case study once I was dead. My life goal was to feature as a Monster of the Week on The X-Files. It took two years for the idea of visiting my GP to occur to me.
Appointment booked, I hopped off the school bus and into the surgery. It was winter, and I remember that I had three dead fingers at the time. The doctor had a look, chewed his pen and declared that I had “early onset Ray Nord’s Disease.” It also never occurred to me to ask who Ray Nord was or how he passed on his germs, but I glumly accepted this wasn’t something that could be cured. I ignored it for another few years while I waited for some scientists to invent Google.
At 18, after a particularly chilly December in my very cold university halls, I discovered that Ray Nord didn’t, in fact, exist. Farewell Ray, you were my first serious relationship. A trip to the computer room on campus confirmed I had something called Raynaud’s disease, a condition which restricts blood flow to the extremities and causes them to ‘die’ temporarily. There isn’t a cure and no one really knows what causes it.
“My husband has learned that putting my ice-cold limbs all over him in bed is not an invite for shenanigans, but a medical necessity.”
It doesn’t seem to kill anyone, but it can turn into more serious conditions such as lupus over time, although the statistics suggest this is very rare.
Raynaud’s has had very specific and peculiar effects on my life. Extreme cold brings it on, but then so does wearing certain shoes, or holding a heavy carrier bag on the way home from the supermarket. Some people experience it around their mouth or nipples, so I’d imagine that breastfeeding my daughter could have been a LOT worse.
As I type this I’m under a blanket in front of a roaring fire, with freezing cold hands and feet. I know that if I want to go to bed soon I will need a hot water bottle for my feet unless I want to get woken up in the night by cold aches. My husband has learned that putting my ice-cold limbs all over him in bed is not an invite for shenanigans, but a medical necessity. Poor love.
Raynaud’s makes me walk funny when it gets my toes, as it can be painful to have my entire bodyweight on a dead digit. Sometimes I can’t grip properly if I’m carrying something. The most common effect it has is to make people go, “JESUS CHRIST WOMAN, WHAT THE HELL IS WRONG WITH YOUR HANDS?” which was fun at school.
In cold weather I can feel it hanging over my hands like a chilly ghost, a slight ache which makes me very aware of any changes in environment or temperature.
I like to look on the positive side of this body-oddness and see myself and those of us with this condition as walking early warning systems for upcoming cold weather.
We are an elite group of humans, capable of diverting blood to our major organs at the slightest hint of a breeze. Our bodies overreact to the cold like toddlers to vegetables. We are superhuman. We are temporary zombies. And even though Ray Nord broke my heart at an early age, I’m not sure I’d be without my weird little condition now.1992 Views
Daisy Leverington - Actor, mother, expert at winging it.