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?

21 thoughts on “The Good Hours Are Not Guaranteed

Add yours

  1. Pushing for productivity’s sake is an ingrained trait for me, as well. I’m recognizing…need to continue recognizing…that pauses are ***purposeful***, not signs of a paltry work ethic. Thanks for your post, Erin. And to answer your question…only two good hours a day? I think I’d divide it up between my dear ones, my loved ones – inclusive of friends and family by birth/choice – and check in on folks. My mind is less overrun when I can share my love…hopeful thoughts…cosmic courage with others. xo to you today! 💕

    Liked by 3 people

    1. It’s such an important lesson. I suppose figured it wouldn’t stick unless I learned it the hard way… which is probably true. 🤣😂🤣 Oh, I love your response, Vicki! A big yes YES to spending valuable few moments connecting loved ones!!! 💕

      Liked by 1 person

  2. It’s truly difficult to imagine only 2 good hours per day Erin. You are brave to share this life you experienced and so genuine in telling the story. When we are forced to evaluate priorities in life, for whatever reason, time seems to become paramount; an essential component. Ironically, I have been working on a post for HoTM about time. My 2 hours: I would walk among the trees and the sun or rain or snow. That is my renewal.

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  3. Only two good hours a day… in them I’d make food, talk with friends, and read a few pages in a novel. I’d forget about work priorities and keeping up with the news and cleaning house. Kind of seems like a good idea to focus on those things now with all my hours come to think of it.

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  4. Lots of wisdom in here Erin. Love this line . . . “Instead use your time to do things that bring you to life.” Early in our marriage, we faced some health challenges. We came to the same conclusions. We could waste our time on the things that didn’t matter, or we could focus on the things that did, made a world of difference. I’m glad to hear that most of your days are now filled with twenty-four good hours. Prayers that that continues. Thanks for sharing.

    Liked by 2 people

    1. Thank you for the kind words and prayers, Brian. I’m glad that you and your wife not only survived the hard times, but carried that lesson about priorities forward. That shift in perspective truly makes such a difference.

      Liked by 1 person

    1. Hi B, thanks for reading. Gosh, I am so sorry for all that you’ve had to go through. It’s a tough balance. To be perfectly honest, I pushed HARD through the first few years until I physically couldn’t. The only only thing that keeps my from drifting back into Productivity-land is fear of it getting bad again. It’s tough learning to not only listen, but trust ourselves. You’ll get there–Im’ rooting for you!

      Liked by 1 person

      1. Thank you, Erin! Over the years I’ve let a lot go, extra responsibilities, etc. especially at work. It’s been helpful. And I’m learning to be more honest with others about my illness and limitations or I guess boundaries and that’s been helpful as well. I’m still working on trusting myself and believing in myself mostly during the times I’m really struggling and in a CFS flare. A work in progress! 🙂 I really appreciate your sharing your journey with us!

        Liked by 1 person

  5. Honestly I can’t even imagine only having a couple of “good hours” a day because I go, go, go! There are days I lack energy to be sure but I tend to just push myself through anyway. That would be extremely frustrating for me… 🙈 I’m glad you’re feeling better now! ❤️

    Liked by 2 people

    1. I used to always be on the move, as well, so I can completely relate! It was extremely frustrating… for the first few years I was convinced I was “just getting old” (at 25 ha!) or I was tired because I ate a few squares of chocolate (sugar bad!), so I kept going. If I had understood sooner, I like to think I would have been kinder to myself. Thank you, Carla! I am so grateful to be feeling better! ❤️

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  6. So much of what you shared is like a page out of my history book. Taking all your energy to raise the hairbrush (you’re the only other person I’ve heard describe the fatigue that way, but it’s exactly true)… Making it through the work day (because you must), only to completely crash… Everything else being allowed to slide… Unfortunately, I sort of swung the other way though, and once I started feeling relatively “normal,” tried to make up for lost time. I’m just now getting to the place of realization that we must make our time really count. Your post was a great reminder of that, and I appreciate it. Thank you for this, Erin! ❤️

    Liked by 2 people

    1. Oh, Kendra, it breaks my heart that you can relate to that heavy fatigue and muscle weakness, as well as all those struggles that accompany it. 💔 I’m so glad that you’re feeling better yourself, and that you’re learning to find the right pace. There is so much I want to do, so I can relate, but it’s a constant weighting of risk versus opportunity. I’m figuring out that it doesn’t take all that much to find happiness. ❤️

      Liked by 2 people

      1. Thank you, Erin, and so happy you’re in a better place too! We have much to be thankful for. Hugs to you, friend! ❤️❤️

        Liked by 2 people

  7. Wow – what an incredible way to bring the Mary Olivia quote to a focal point about how we are spending our time! You had to learn so much the hard way – thank you for sharing that in such a transformative way with us. So glad that you now are experiencing 24 good hours a day and leveraging all that learning to truly live this wild and precious life!

    Liked by 2 people

  8. “In the early days of my illness, I pushed through the fatigue. I pushed myself to the limit to meet society’s expectations, and my condition worsened for it. I betrayed my own best interests. But I know better now.”

    When I got Shingles for the 1st time in my 20s, I was all about pushing myself past my limits to show how productive I was being. I felt I needed to exert super-human efforts to be accepted. Unfortunately, not taking the illness seriously enough to rest, I got a relapse. I hadn’t learned my lesson, so I kept getting relapse after relapse until the Shingles became chronic.

    Sometimes we can be our own worst enemies, by creating illness or prolonging illness, when simply limiting our activities and getting more rest would have closed the gate from it entering our lives.

    This isn’t about trying to blame the victim, but rather to inspire each of us to value our health, to guard it, for even a strong athletic person in their 20s can succumb to illness. That was a deep life lesson I learned coming out of that time.

    Liked by 1 person

    1. Yes, Tamara! I couldn’t have said it better myself. The pressures of society and our own selves are so powerful, and it’s hard to step back and allow things to be sub-par or incomplete… it’s so hard. I’ve always been one to learn from other’s mistakes, but my time of illness was the exception… that was a lesson I had to learn to hard way. Like you, it’s been a deep lesson and I will never again take my health for granted.

      Liked by 1 person

      1. Yup, that’s me too! Learn from others for so many things, but for my health I had to learn experientially. Lime you I know better now and fi d gratitude in so many moments. I still don’t regret going through it, because it opened the door for me to heal from all the trauma that I went through. I never thought I’d be able to say that, but I see it clearly 20/20 hindsight!

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