Spoonies vs Winter: A Love-Hate Relationship

I love winter. Fresh-baked gingerbread. Wearing slippers and sipping hot chocolate while I write, cats nestled by my side. Holiday dinners with family and friends. Christmas trees, menorahs, fluffy snow everywhere...

But I also hate winter. Daily panic attacks because of the weather. Scrubbing my hands until they're raw, because the person sitting next to me on the bus coughed. Fearing I can't pay the heating bill because I'm underemployed but still was turned down for disability. Icy fingers and toes (which is saying something, for an anemic). Being sad that I don't have the strength to toboggan or snowshoe like I used to.

Thus is life for a spoonie; things you once enjoyed, you can't as much (or at all); things you once paid no mind to, make life incredibly difficult. Winter also brings Seasonal Affective Disorder (or symptoms thereof), additional expenses, like heating, boots and warm clothes (difficult to afford if you're un- or under-employed thanks to a disability), and unfortunate run-ins with family members who don't 'get' the illness you're dealing with. And every day, you're forced to struggle with pain, fatigue and stigma on top of it all.

Do you have a love-hate relationship with winter? How do you cope?

Just keep fighting.

Every day, I pray my pain will go away and this dark, increasingly heavy cloud of fatigue over me will dissipate... but it doesn't. The more tired I am during the day, the more my insomnia plagues me at night, and I eventually pass out, sleeping all day. Then I can't fall asleep the next night. It's a never-ending cycle.
And yet, optimist that I am, I keep hoping my fatigue will magically go away, my doctors will find a cure for my pain, I'll 'snap out of' this, I'll drink a few cups of coffee or take an Advil and be totally fine.

But chronic pain and fatigue don't just disappear.

It's a daily struggle to walk the very thin line between accepting we have an ever-present disability, and allowing that admission to derail our attempts to live a fulfilling, happy, meaningful life. 

I know the struggle is worth it, deep down. Even on days like today, when I've been up for almost 40 hours or when my joints ache so much I sob or when I can't stop pulling my hair out.

Just keep fighting.
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