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Currently (2020) my most updated blog is pinkfeldspar.

Spaz is a useful side blog for sorting other stuff out.

Thursday, December 15, 2016

living with raynaud's

Imagine being stuck in a body that doesn't respond to environmental change properly. Imagine being along for the ride and there is nothing you can do but try not to grit your teeth too hard and wade through it. Imagine someone next to you making fun of you being a big baby and telling you to tough it out. Imagine finding out years later you've got a real condition that not only makes you more miserable, but impacts your quality of life in ways people who mock can't even imagine.

I've apparently had Raynaud's since childhood. Waiting for a school bus on a snowy morning had my teeth uncontrollably chattering when others' weren't. Doing chores involving cold water on a self sustaining farm included years of garden to freezer or shelf food prep. Working outside in winter to the point of not feeling hands and feet was not only expected, but very much taken for granted, even when a person couldn't feel their hands and feet again an hour after coming back into the house.

None of us knew the difference, except that I'm more of a whiner. I was the big baby, and I learned to tough it out. What I've never told anyone is that as I've gotten older, I've experienced some very scary incidences of vasoconstriction in my limbs to the point of my arms, legs, and face blanching completely white, and teeth chattering uncontrollably, not from going outside, but from simply sitting on my couch watching TV (or even sleeping) and a sudden nervous system feedback glitch tells my body I am in the arctic and I must conserve heat as much as possible, and even though the house is plenty warm, I'll chatter uncontrollably in 3 layers of bathrobe, sweater, and blanket in front of a space heater until my body can believe it really is hot and I can finally throw all that off.

I used to take hot showers, but that got dangerous, and nowadays hot water triggers a histamine response, so I look like I'm rashed out from head to toe when I take a hot shower. A hot shower would be really good for my fibromyalgia, but I don't dare go more than warm.

I live at odds with climate control. I wear sweaters all summer even when I feel warm because I'm so intolerant of air conditioning. I wear short sleeves in winter so I can layer up and down as needed at the drop of a hat because the tiny degree range from the heater going off to clicking back on is miserable.

My body cannot respond correctly to even the smallest temperature change. I avoid summer sun like the plague because I overheat so easily, even though I wear sweaters in the house and set the thermostat higher than many people do. Imagine being like this and going through hot flashes. That was fun for all.

I never wear or use fleece, because I'll suddenly need to strip at any moment or collapse from sudden heat exhaustion. I nearly always have sweaters or extra shirts hanging on chairs to grab and throw on in case I feel the least chilly. I own the temp controls in every car I sit in, and to other people I seem obsessive with fine tuning temp regulation. My family is so used to me being like this they don't even question it.

But it's a real thing. If I'm in a crowded area and overheat, I have to bolt. If I must get through a cold area for some reason, I have to deal with recovering from feeling colder much longer than I ever let on. If I'm at the back of Walmart picking up milk and eggs without a sweater on, I'll still be very cold by the time I get back to the register, and the vasoconstriction in my hands will make even swiping a debit card somewhat difficult. I've broken my eggs a number of times just getting them home because I couldn't control my hands.

This is only one of several things that affects how my hands work, but I know a lot of other people live with Raynaud's too. For some people it's fairly mild, your hand hurts holding a cold can of pop or beer. For others it's a game changer, deterring you from hanging out at stadiums for sports and concerts, or doing fun things with family and friends in weather temp extremes. It seems like a simple thing, like a no big deal kind of thing to have a weird cold hand and feet type of syndrome, but as people age, it becomes a much bigger deal. Less blood flow means less feeling and slower healing. Over time, this sometimes turned into amputations for some people.

It's hard imagining what things are like for other people, but comparing their complaints to how you feel the world isn't fair. If someone says they're cold, they really are cold and need to warm up, and even if you are hot yourself and think they're just whining, you don't know whether they might be living with a condition that will one day claim a limb.

Fast Facts About Raynaud's Phenomenon
Frequently Asked Questions - The Raynaud's Association
How Serious Is Raynaud's Phenomenon? - The New York Times

Just as Ford tells Arthur, "Always know where your towel is", I always know where my sweater and socks are. And I own an insane amount of gloves. Gloves are awesome.