A Burden and A Gift

I entered 2019 with exceedingly high hopes. Health, wealth, prosperity and new beginnings were surely waiting on the other side of midnight. Though I know that January 1st is an arbitrary date, I had dreamed of leveraging its symbolism. If healthy eating, light exercise, meditation, affirmations and being proactive weren’t quite enough, maybe the promise of a new year would gently push me up over the last small hill on my journey.

Over the last six weeks, I’ve swerved recklessly between feelings of defeat, hope, frustration and ambition.

In four days, I’ll pick up the imagining from my latest PET scan and have my father-in-law review the results. “The program has changed since I retired,” he’ll explain as he scrolls through slices of my body, noting the calcified nodules in my lung, the T-shaped IUD lodged in my cervix and exact measurements and SUV of the self-contained mass hiding behind my kneecap.

One week from today, I’ll gain some insight into my gut microbiome, micronutient levels and hormone balance. Maybe, jut maybe, we’ll discover that one thing–the bull in the china shop wreaking havoc on my body. Or perhaps, for the hundredth time, the doctor will look me sternly in the eyes and explain that everything is within the normal range.

I’m trying to prepare for and accept the answers before they arrive. The doctors may run more tests, scoop out some ornery cells and leave behind a story-worthy scar or they may send me home and tell me to come back when things get worse. I’ll try to contain my sigh when they state that I still appear to have a sparkle in my eyes… while neglecting to mention the sleepless black holes into which they are receding.

I keep telling myself that whatever happens, I will be okay.

Over the weekend, a friend lost his sister-in-law and her unborn child in a tragic accident. Another friend is witnessing Kenyan hunger, homelessness and poverty firsthand. In comparison, my troubles are small and insignificant. I am alive and, in the grand scheme of things, that is enough.

Illness, especially something chronic and so nebulous in nature, is unarguably a burden. This disease has cost me a lot–I’ve spent over $10,000 out-of-pocket on diagnostics and treatment, the crushing fatigue has limited career advancement opportunities and I’ve lost several friends who have been offended by my excessive yawning and early nights.

Yet, as I search frantically for some kind of silver lining, I keep uncovering more and more to be grateful for beneath the fatigue, uncertainty and pain. Here are few big ones that come to mind:

Learning to Listen to my body

The compounding fatigue keeps chipping away at my energy, and it’s reached a point where I know when I need food or sleep and my body give me no choice but to address these needs. I used to hem and haw about what to eat, which book to read or how much longer to stay out. Now, my body dictates these things to me: you’re going to eat whatever is most convenient and you’re going to sleep when you’re tired.

Intentional use of energy

I average 12 hours of wakefulness per 24-hour day, and at least half is spent stumbling through a cognitive blur. While a bit of caffeine helps me through my work day, I have become acutely aware of how I spend my free time. I have approximately 40 hours per week for food preparation, eating, cleaning, seeing friends and family, reading, writing, meditation, waking up, getting ready for the day and everything in between.

My current priorities are health and well-being. A fair amount of my time goes towards buying fresh produce from the farmer’s market, mindfully preparing nutrient-rich meals and sharing these meals with my boyfriend. I begin the morning with meditation and writing, then wrap of the day with a warm shower and a bit of reading.

For secondary priorities, I consider the best way to maximize value while minimizing effort. How often do I need to see a friend to maintain the friendship? How can I best move my body without completing exhausting my energy reserves?

Let go of anything that does not add value

Redirecting my energy towards my top priorities has produced the unanticipated, yet welcomed, side effect of releasing all non-essential tasks. I haven’t used social media in over a year and I’ve dropped the habit of mindlessly browsing blogs, articles, newsletters and shopping websites. I’ve inadvertently adopted an old mantra that once guided my hectic days: create, don’t consume.

I try to utilize my time in ways that feel productive. Whether completing a project at work, preparing a healthy meal, hanging up a load of clean laundry or watering the plants, my time is spent doing necessary things that I’m proud to check off of my to-do list.

Experience immense gratitude for the small things

Yesterday, I felt a small blip of energy after many hours of dragging my feet and literally hopped up and down with excitement. Over the last year, I’ve become more cognizant of life’s tiny blessings. I notice and appreciate aspen leaves fluttering in the breeze, kind and encouraging words, opportunities to help others and when our friendly neighborhood ground squirrel, Nibbles, makes an appearance to snack on some diced carrots.

These small moments of wonder, joy and gratitude help keep me afloat. In a world filled rainbows that span the entire sky, coalitions of elderly ladies who sweep public sidewalks, dog parks filled with wagging tails and resilient folks who find ways to thrive after cancer, it’s impossible for me to stay down for long.

When I consider how wonderful is it to simply be alive, it makes it so much easier to recognize this challenging period as just one stage of many. When I acknowledge that I already have all that I need, I have no desire to indulge in discontent or self-pity, but instead choose to seek out and celebrate those small moments whose profundity can shift the trajectory of our day, and sometimes even our lives.

8 thoughts on “A Burden and A Gift

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    1. In their defense, the friendships disintegrated before I’d identified my health issues, so everyone (myself included) thought I was just exhausted from burning the candle at both ends. While it doesn’t make things right or better, I can understand the frustration they all must have felt.

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    1. I’m guessing you’ve always been a “go, go, go!” personality, which make the choosing that much more difficult. With fatigue, staying up for another hour or two to finish something isn’t an option. Thank you so much for your well wishes, and I hope you’re able to find some answers and relief, as well. ❤

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      1. Honestly, I *never* would have said I was a typical “go, go, go!” personality before getting cfs. I was a messy night-owl with no ambition and a bone-deep hatred of exercise. But getting sick and grappling with priorities showed me that actually I was (and always had been) driven, goal-oriented and an appalling perfectionist. I became really good at time management and long-term plans to beat the fatigue (chipping away tiny bits of tasks regularly and consistently for months or years). It flipped my whole perception of myself, and challenged me to value myself properly for things other than output. It was a weird experience.

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      2. Ah, so perhaps the silver lining of your cfs diagnosis was learning to set, achieve and then celebrate those long terms goals. Having a limited amount of energy in the tank each day certainly put things into perspective, and helps us to identify what *really* matters. I hope that you continue to make progress and keep a positive outlook. I love your comics and I think your sense of humor is a great way to move through life’s challenges and connect with those who can empathize. 🙂

        Something you may look into (if you haven’t already) is gut/microbiome testing. I’ve had terrible, unexplained fatigue for over a year with normal labs across the board. I recently completed the Genova GI Effects stool analysis test, which revealed that my gut is a hot mess! Countless abnormalities, taken together, suggest that my nutrient absorption is so poor that my body is unable to convert food into energy, which makes sense with the chronic fatigue. I’m in the very preliminary stages of diagnosis/treatment, but it seems like a promising path (and one not many doctors seem willing to explore).

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      3. I’ll look into it. I have heard that cfs has recently been linked to gut microbiome things, but still early days in terms of cfs knowledge (and it could be another symptom rather than a cause).

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      4. Yes, our bodies are such complex and still somewhat mysterious machines, and sometimes we just need to move through trial and error until we find something that works for our unique biology. Keep moving forward–I know that cfs (and probably most “syndromes”) are challenging for both doctor and patient. Sending love your way! ❤

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