Tag: Lupus

Napping

Long distance, remote adventures are tough. They are made immensely more challenging when living with an autoimmune illness.

People express their bafflement that I can tackle a multi-month paddling trip and still claim to struggle with lupus but there are many ways I have learned over the years to cope with my illness.

One of the most effective strategies is my ability to nap wherever I happen to be if I feel inclined. And outdoor adventures allow me to partake in one whenever I want and for as long as I want (something that work places tend to frown upon).

Since lupus sauntered into my life napping has become one of my favourite pastimes.

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Time Unused

Sailing the Gulf Islands and Desolation Sound six years ago was the first time I experienced lupus symptoms. Since then I have learned how to adjust my life to accommodate her.

“When the body is rendered useless, the mind still runs like a bloodhound along well-worn trails of neutrons, tracking the echoing questions: the confused family of whys, whats, and whens and their impossibly distant kin how…It was all I could do to get through each moment, and each moment felt like an endless hour, yet days slipped silently past. Time unused and only endured still vanishes as if time itself is starving, and each day is swallowed whole, leaving no crumbs, no memory, no trace at all.”

This is from the beautiful book, The Sound Of A Wild Snail Eating by Elizabeth Tova Bailey. It has me remembering those days on the sailboat when I too observed a snail go about its day in the woods.

adventuring and playing is so vital to my life. living with lupus makes me appreciate the health I still hold, health I took for granted before. Never should we take for granted health and youth. They are so fleeting.

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Weather And Moods

I hate to admit the weather affects my mood.

I can endure the rain and cold for some time but these past few weeks of traveling the Oregon Coast have been particularly cold and wet. While I have enjoyed trail runs and beach strolls the cold rains have knocked my enthusiasm from traveling a little.

The hiking has been less frequent but we have thoroughly enjoyed hopping from one tiny coastal town to another, going from coffee shop to junkyard to another coffee shop, then the thrift store, junkyard, bakery, coffee shop, gear store, coffee shop… you get the idea. I love any place that advertises, “Espresso, gear and beer.” If it was sunny outside I’d feel guilty being so idle but with all this rain I can enjoy my fourth cup of coffee and read another hundred pages before noon, then stroll around the corner to another eclectic café and feel not an ounce of guilt.

Along with the winter storms a lupus flare is threatening to kick up again. Learning to “take it easy” has been a difficult to accept as necessary. I feel like a restricted husky unable to run free. The rain knocking down my enthusiasm for trail runs and hiking helps keep me from overdoing it, reminds me to just chill, take things easy, to relax. Which is what a lupus flare requires.

We’ve looked at the weather forecasts and sunny skies are in our future. Hopefully my mild flare will subside and I can enjoy a few more some beach runs and forest scrambles before the long drive home back to the Yukon.

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A Simple Happiness

What a happiness to find myself on the Pacific Coast, among old-growth redwoods. After two months of hiking and camping in the desert the lushness of the north coast rainforest is intoxicating. The shades of green are jarring. Whales and seals and sea lions swim offshore. Elk and cougar roam the forest. Spotted owls and varied thrush hide in the depths of the woods.

What happiness it is to be here.

This wandering life is not always comfortable or easy. There are long days of cold or wet or both. It is tough, not always quite as idyllic and romantic as it might appear, especially on social media. Added to that uncertainty is the self-doubt and insecurity I am internally plagued with. Joint pain from lupus pulses in my knuckles on these cold, damp mornings.

But there are moments such as this when all worry and concern dissipate and I am left with this simple emotion of blissful happiness. What a winter solstice day we enjoyed yesterday wandering in a rare wilderness.

 

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Trail Running Canyons

Until lupus interrupted my life five years ago I was an avid trail runner – when I wasn’t consumed and obsessed with backpacking, that is. I have continued to run but not with any consistency or with the endurance I once held. Instead of celebrating a strong forty-kilometre Sunday trail run I have had to learn to be happy with an eight-kilometre run. This winter, however, I have been felling strong when usually this is when I am at my weakest. Taking time from work to camp and hike in southwest US desert for a few months has done me well – mentally and physically. I have been waking up lately finding myself excited for a run. The other day I felt assured my body was strong enough for a fifteen-kilometre trail run through a canyon. It was half the distance I once considered easy but I haven’t run these distances with any regularity for so long. I won’t lie and say the run was easy. The trail was a steady gradual climb up and ran along a deep sandy canyon wash and over boulders, slickrock and chockstones. A few days earlier I jarred my shoulder in a slot canyon (see previous IG post) and after eight kilometres of running it began reminding me of its presence, reminding me that I was running with a body not quite 100%. Despite the challenging trail run I did obtain that addictive runner’s high that has eluded me since lupus came along. That high kept me floating about happily the rest of the day. I’m still taking it easy, careful not to push myself too much, but this high from running, there’s nothing quite like it.

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