The Good Hours Are Not Guaranteed

“Tell me, what is it you plan to do with your one wild and precious life?”

Mary Oliver

Every now and then, I like to drop into chronic fatigue forums. I think it’s an exercise in recognizing how far I’ve come, practicing empathy for those still suffering, and a chance to identify new research into the root cause and potential treatments.

Someone on a forum recently posted that their neurologist told them, “You only get two good hours a day. Don’t waste it on bullshit.”

That Period In My Life

There was a period in my life where my weekdays consisted of nothing more than working, commuting, and sleeping. Weekdays, I would sleep at least twelve painfully restless hours. On weekends, I would sleep over sixteen hours and try to toss in a shower.

There was a period in my life where it was such an effort to lift my arm that I often went days without eating, brushing my teeth, or combing my hair. I didn’t have the energy to worry about bad breath or or body odor.

There was a period in my life during which I had to tackle the single flight of stairs at work in four increments, with resting periods in between. As a burning sensation coursed through my muscles, my inner cheerleader shouted at my inner child.

There was a period in my life during which I would frequency arrive home from work with no recollection of the hour-long commute. My boyfriend was “actually” disabled, so quitting my job to recover never felt like an option.

There was a period of my life during which I told myself and everyone around me that my fatigue was “mild” but, in retrospect, I know now that I would have been bedridden if I didn’t believe my income to be an absolutely necessity.

A Few Good Hours

For most of my illness, the good hours were few and far between. I had two good hours per week, if I was lucky.

There was a short span in early-2019 during which a new medication briefly offered relief: “I spent nearly two weeks standing atop a grassy cliff, overlooking the crashing waves as the salty breeze brushed up along my check–it was heaven. And then I fell off the cliff and now lay splayed upon the jagged rocks below.”

Several months later, I was able to walk across the house without feeling like I’d just run a marathon, noting that “my health journey has taught (or, if I’m being honest, forced) me to rearrange my priorities, remove stressors, and simply chill out.”

By the time I’d reached the four-year mark, I had figured out not to waste my precious few waking hours on trivial things. When it really comes down to it, most of what we spend our time on is trivial.

Looking back, I’m embarrassed to admit that personal hygiene, home tidiness, and regular meals feel by the wayside. However, I also feel a tinge of admiration that I practiced self-care in the way that called to me. I rested my body, I allowed myself sleep.

Don’t Waste It On Bullshit

Don’t waste your time doing things you can delegate. Don’t waste it doing things that make you feel miserable. Don’t waste it with people that make you feel bad about yourself. Don’t waste you time on things that aren’t additive.

Instead use your time to do things that bring you to life. Spend your time talking to friends or calling your mother. Spend your time taking a relaxing bath. Spend your time engaging in your favorite hobby. Spend you time cleaning the bathroom, if that make you feel like you’ve got it together.

It doesn’t matter what you do. It’s about what makes you feel good and makes you feel like yourself. No matter how fatigued, every day I captured a moment or two of joy in my five-year journal.

When you only have two good hours in a day, or even in a week, you quickly learn to use the time for things that matter you you. The focus is on that which is necessary to sustain you–nourishment, joy, and connection. It becomes obvious that the things society tells us we should prioritize–television shows, a perfectly tidy appearance, and one-upping our neighbor–don’t matter at all.

The Carryover

Most of my days are now filled with twenty-four good hours. However, I still cherish each moment as if it were the rarest thing in existence. I understand now that my health is not a given. The good hours are not guaranteed. I no longer take them for granted.

Before becoming sick, I was bombarded with the message that productivity is the only way to live and be happy. In the early days of my illness, I pushed through the fatigue. I pushed myself to the limit to meet society’s expectation, and my condition worsened for it. I betrayed my own best interests. But I know better now.

Unless someone has experienced the crushing fatigue of chronic illness, it’s wholly unfathomable. It’s not the same as the heavy eyelids after pulling an all-nighter. It’s not the same as suffering through a bad sinus infection or recovering from a painful broken bone.

But there is a message here for all of us. We all have a limited amount of time left. It may be days or may be decades. In Mary Oliver’s now-famous poem, she asks: “What is it you plan to do with your one wild and precious life?”

Imagine, now, that you have only two good hours per day. How would you spend your time? What would be your priorities? What might you cut out of your life? What would sustain you through the hard times?