The nights are drawing in. The weather is more unpredictable and colder. And my Raynaud’s has started acting up. Oh the joys. I wish I could say, “I wish it was summer every day,” but my Raynaud’s still acts up when it’s hot. When people are in bikinis and shorts I am walking around with my head held low in trousers and (shock face) thermal vests and socks! How I love winter when I don’t have to be embarrassed about how many thermal items I am wearing or that I am wearing a coat, hats, gloves and scarf and resemble an eskimo lost in Dorset.
When I was first diagnosed with Raynaud’s back in 2006 I found it hard to manage not knowing what to do or try. Over the past few years I have found out how hard and unpredictable it is living with Raynaud’s. There are many challenges of living with this condition that people don’t realize. When I was first diagnosed not many people had heard of the condition. But now 10 years later it is a lot more common, and most medical professionals know about it.
Shopping in Iceland is a challenge in itself — all that frozen food just looking in the shop gives me a sense of dread. Quickly grabbing your food, throwing it in the trolley and then looking down at your black mottled hands, and then thinking with dread, “I’ve only got two things in the trolley and am at the beginning of the shop.” Jump up and down that you can now do an Iceland shop online in front of your laptop with the heating on and have it delivered to your front door, saving your poor hands.
Walking into a supermarket and down the fridge aisles with a thin cardigan just wishing the person in front of you blocking the whole aisle will move so you can get to the next warmer aisle. There is no way of avoiding the dreaded cold aisles as you need milk, butter, yogurt, etc. When you’re in the supermarket on a “hot” day and the blasted air conditioning is on and you’re freezing, people give you funny looks as your in trousers, boots and a thick cardigan. Wait until they see the heated hand warmers and gloves in your bag. If only they knew.
Having a shower or a bath is difficult. Even 10 years later, it’s the same as if I was first diagnosed. Getting in is all right, but two minutes my lower limbs go a dusky black, followed by pins and needles and numbness. I am unable to physically stand. After a minute I get out again. And then I face the problem of trying to get warm again and get circulation back quickly.
I wish I could go swimming in the middle of a heatwave, but for me getting in and out of water is a big trigger for my Raynaud’s. One minute I go into the sea pink and come out mottled blue like something that has turned in the washing machine, a white top mixed in with the bright blue t-shirt, if you know what I mean. At school during PE swimming classes I used to get laughed at. My skin tinged a deathly blue just for being in the pool 10 minutes. I was called a freak just because of my circulation. I was bullied whenever I had a flareup. I was left out of activities because of my condition. I couldn’t do full swimming classes or play out in the snow.
Living with Raynaud’s is tough all year round, not just in the winter. When you’re newly diagnosed with no idea what to do or try, it seems very daunting. But there are things out there that can help: thermal gloves, socks, leggings and vests are great. Wearing thick socks and slippers around the house help. There are electric blankets for the bed and throws for sitting in a chair. I also find a lot of my information on my condition on the following website: https://www.sruk.co.uk/.
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Thinkstock photo by Ingram Publishing
I am living with multiple chronic illnesses and I fight through each day trying to raise awareness of a condition that no one seems to understand or accept. My goal is to raise awareness to prove that just because someone is ill, it doesn’t change the fact that they are still the same person they were before their diagnosis. All that’s changed is that they now have a faulty body. No one who is ill should have to fight to be believed or listened to, whether by family, friends, doctors or strangers.
chronicallyillphoenix