Surviving winter with an autoimmune disease

Recently I met Sara, writer at High Heels and Training Wheels.  Sara is a caring young mom that has lupus and is suffering during this bitter cold Chicago winter too.  I am grateful she offers ideas below on managing this never-ending freeze and love that she incorporated my daughter’s favorite movie, Frozen.

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There was a time, not too long ago, when it was so hot that I was certain winter would never come and I was never going to be cold again. I would never flare again from lupus. I was Olaf dancing healthily through an eternal summer in my mind.

Except either Elsa or Mother Nature tricked me and winter has come once again.

So here I am in the throes of another Chicago deep freeze dreaming of California warmer times and counting down to the dog days of summer. Being cold physically hurts me. My lupus has once again flared because it too despises winter. My body aches. My joints are stiff. My fingers and toes are flashing their patriotism as they turn red, white, and blue (something called, Raynaud’s Phenomenon) and they have become close to useless. I can barely function and move. Bone chilling takes on a completely different meaning when you’re a lupie. And that’s only the tip of the iceberg. (Haha get it? Iceberg?)

I hate the cold, but if I am sentenced determined to live in this tundra then I must make it through year after year.

Here are ways that I survive the winter:

1) Stay indoors! Ok, not really. Well, kinda. I don’t think I would survive staying in my house all day everyday. After two or three days I’m ready to escape leave and do something. I struggle with this because during the summer I can take the kids to the park, sit and relax while the boys play. That helps them burn energy, helps me not overdo it during a flare, and helps us get some fresh air. Unfortunately during the winter that’s not an option and I can’t stand germy indoor play centers (especially since I’m on immunosuppressants) so instead we go to museums, walk dead-mall (easier to not spend money!), go to the movies, or if I’m really adventurous we go to LegoLand. Tip: Try to find places with covered parking. This will help you avoid the elements and make it easier to rush indoors without necessarily having the coats, hats, mitts, child, scarves, gloves that you will inevitably lose inside. Then once you’re unloaded and ready…run like the wind and get inside.

2) Consolidate shopping trips. Sure I may love Target’s stuff more than Meijer’s. I may like Mariano’s food more than Meijer or Target, but these superstores are a cold hating woman’s safehaven. I can get all of my shopping done in one store. Toothpaste? Not a problem! Plastic storage bin? We got it! Taco dinner fixings? Head down to aisle J25! I only have to get in and out of my car once which means at least five fewer minutes are spent being outside. When your hands lose circulation and don’t function after only 30 seconds in the cold (and that’s with double layering your gloves) you suddenly become less worried about quality or cost (I’ve learned that with an autoimmune disease, sometimes you just need to lower expectations.) My hands and feet are worth more to me than organic bananas. Tip: You can get organic foods at Super Target!

3) Dress appropriately. Yes, most of the time we do this, but if you have an autoimmune disease that’s temperature sensitive you have to go overboard. Give up fashion, give up style, and get bundled. I wear the biggest, poofiest, purple down jacket that is in existence. I look like Barney’s long lost bloated sister. I put on a thick hat, gloves (I’m still searching for a great pair that doesn’t make my hands respond so painfully to the cold, but for now I wear one or two layers of gloves to help), and a scarf for good measure. I may grab some hand warmers if I have to be outside for a long period of time. I wear two pairs of wool socks, knee high wool-lined boots, and on the worse days I wear an UnderArmour top and bottom (For the record, those feel more restricting than Spanx!) under my clothing. If I can keep my core temperature warm then usually I’m semi ok. Well except for trying to use ice cubes I can’t feel for hands and feet.

4) MOVE. If all else fails, and it very may well, I suggest you move to a more temperate climate. Too much sun can do awful things to you when you have lupus so a happy medium is essential. Of course this is easier said than done and I know it’s probably not going to happen, but I’m still California dreaming anyway.

Now go cuddle up with your heated blanket and plan your survival tactics for the rest of this winter. In good news, we only have NINE Mondays left until Spring!

Read more of Sara’s writing at High Heels and Training Wheels. Follow her on Facebook here and Twitter here.

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