Tag: Lupus

Reprieve

After a really crummy summer – health-wise – I seem to have gone into remission from lupus. No inflammation. Not even a twinge of arthritic pain in a knuckle. Even my blood work was perfect before we left home for this road trip. This is a first in six years.

I am ecstatic of course. Before becoming ill I was a morning person, going out for 20-30 kilometre trail runs with my malamute before work. Then lupus came along and put an end to all that joyous freedom.

I have forgotten how magnificent it is to wake in the morning and not feel pain. My hands flex into fists again. My knees lift me out of bed without trouble and carry me down the trails. I am again leaping out of bed as soon as the sun is rising, crawling out of the warmth of my sleeping bag to stand out in the cold above a canyon and watch yellow light fall across the land.

While on the road I have been keeping in touch with two friends each battling far worse autoimmune illnesses than me. It is nice to speak with others who understand what autoimmune illness does to your body, your mind, your spirit. This illness is difficult to explain to people who cannot feel our joint pain or understand the full weight of fatigue – fatigue that is much more crushing than your “I’m jet lagged” tiredness or your “oh, I couldn’t sleep last night” fatigue.

The sun I’ve been frolicking about in these past few weeks have been divine. And I am most definitely grateful for where I am – physically in the desert and in my health.

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Lupus Is A Bully

“My spirit is broken.”

This is what I told my specialist the other day.

Some might say that’s dramatic, especially since I appear to have such an awesome life.

It’s true. I have a great life. I get to spend the majority of my time not working, playing outside instead. I paddle, hike, ski. I go on multi-week and multi-month backcountry trips. I have more time than most to saunter about in wild places.

And I have John in my life.

But having a lovely life doesn’t negate the struggles I face daily in coping with an autoimmune illness. I can have a good life and still struggle with depression. That doesn’t make me ungrateful though plenty have said that is the case.

I am well aware that when it comes to autoimmune illnesses I have it pretty good. It could be a lot worse. But losing the ability to do what I love most, to lose abilities I once held dear is jarring. It requires a whole rethink of how I see myself. It means finding joy in new things. It means mourning the loss of what was my identity.

If a person talks about struggles they risk being labeled a downer. A complainer. Ungrateful.

But it is just that fear of speaking of struggles that isolates us. And isolation leads to loneliness and the path beyond becomes darker. It leads into a realm that is even more forbidden a topic to discuss.

Instead of telling people to buck up, pull up your big girl panties, how about just listening. I post stories about lupus not for sympathy but because adventuring in the backcountry with an autoimmune illness means what was once easy will no longer be. It is isn’t possible to move through life without lupus influencing my day to day life so how can I possibly never speak of how she bullies?

2019 NWT Paddling Trip Recap

This summer we traveled into one of Canada’s newest national parks, Thaidene Nene National Park Reserve. It is a wilderness not accessible by road and because of this some have questioned its value as a national park due to its lack of accessibility.

It’s true. It’s a tough place to reach. Not many will see this place or travel in it but it is a remarkable wild place, home to muskoxen, moose, black and grizzly bear, wolf, wolverine and so many birds.

It deserves protection regardless of whether it is accessible to people or not.

Our 12-week paddling trip was shortened to just six weeks due to several factors, mostly thanks to lupus kicking my ass and the lakes on the Barrens still being frozen in mid-July, both of which are very effective in stalling the forward momentum of a canoe.

The fatigue that accompanies lupus and the persistent ache of joints made this trip, already challenging enough, only tougher. Exhaustion trailed me all summer. It is a frustrating, maddening symptom of lupus. This is not your normal, just paddled 12 hours and now I’m tired kind of exhaustion. This is a tiredness indescribable. When it hits, there is not enough coffee or energy drink to combat it. When it overwhelms I tend to simply plop over and pass out, wherever I happen to be.

Not wanting to push on and risk a full-on flare, which can take months to settle down again, we cut our trip short.

Despite the challenges, oh, what an adventure we had. We spoke only with a half dozen people in six weeks but had the constant company of arctic terns. We wandered among herds of muskoxen, shared beaches with black and grizzly bears, found shorebird nests and lived and traveled across a remote landscape for six wild weeks.

The East Arm of Great Slave Lake
Favourite Campsite on Great Slave Lake
3am sunrise
Along Pike’s Portage
On the Edge of the Barrens

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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