Learning to Be Unwell (Somewhat Begrudgingly)

On Saturday I ended up sitting in the car in our driveway, sobbing.  Both the dog and the cat stared at me out the front window wondering what the hell I was doing. See, I was driving home from the gym and listening to “The Moth Hour” on NPR. (Leave it to NPR to make me cry!) Mark Lukach was talking about his wife and and her depression. It was so clear that this guy loves his wife. And it was so clear that it ripped Mark’s heart out to see his wife in such an extreme, deep depression. For some reason, while listening to Mark talk about his love for his wife, it occurred to me that I may never get better. I may never not have fibromyalgia. I may never not struggle with my depression. And because of that I couldn’t get out of the car. I couldn’t quite come home.

Lately I’ve been fighting so hard. My illnesses and me — we’ve been locked in an epic battle, each trying to pummel the other into submission. I’m bruised and bloody, but not quite broken. I’m still going through the motions. I’m doing everything I know how to do. I’m resting. I’m exercising. I’m practicing mindfulness every day. I’m eating what I’m supposed to eat. I’m taking the medicine how I’m supposed to take it. I’m stretching. I’m drinking enough water. I’m in contact with all my doctors. I even picked a new theme song (“Proud Mary” by Tina Turner – live version from “All the Best – The Hits” 2005).

And I’m not getting better.

I’m tired of the fighting. So, so tired. But I’m also not about to give up. (KIIIIYYYAAAAAAAA!)

My only other option is to learn how to be sick. Truth be told, I’ve been fighting against this option for quite some time. I’ve shoved it aside with scorn and anger declaring, “What the ^&*(#%$#&**!!! I don’t want to learn to be sick! I want to learn to be well!”

Now I think I have to do both. I need to learn to catch the wave of wellness when I can. And I need to learn how to batten down the hatches and be . . . unwell. I need to learn to be unwell the best that I can, because all this fighting against my illnesses, all this fighting against myself, is killing me. I don’t know for sure, but I suspect that being unwell is a skill. I suspect that being unwell and still participating in my life with love, patience, and meaning can be learned. I also suspect it takes a lot of practice.

As it turns out, there’s a book (FTW!) on how to be sick: “How To Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers”. I’ve ordered it from the library — for the second time. The first time it sat on the mantle and I glared at it for a whole week before returning it. I didn’t open it once. This time I’m ready to at least skim the contents. Maybe even cozy up with a mug of tea, a blanket, and read a few paragraphs.

On Saturday, after crying in the car and after talking to my best friend, I did go inside. I walked in the door to people and animals who love me and who always want me to come home. Even with my illnesses.

What about you? Do you have any advice about learning to be unwell? If not, please share an inspiring quote (I’ll share one too) that helps get you through the hard times. I’m looking for all the help and hope I can get! 

This doesn't have to do with anything. Except I suspect it may also take lots of chocolate to learn how to be unwell.  (original image from http://lulas.com/blog/index.php/chocolate-goodness/)

This doesn’t have to do with anything. Except I suspect it may also take lots of chocolate to learn how to be unwell.
(original image from http://lulas.com/blog/index.php/chocolate-goodness/)

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5 thoughts on “Learning to Be Unwell (Somewhat Begrudgingly)

  1. joslyne Post author

    Here’s my favorite hopeful quote: “Darkness is just a path between light and light.” Except I have no idea who said it . . . Let me know if you know who it was. 🙂

    Reply
  2. Lisa Gibalerio

    Really difficult, in our society at least, not to try to fight, to rally, to battle an illness. All those “soldier on” metaphors can’t really apply to CI. It takes too much precious energy, right? . . . over the long-haul. What I observed in my house was that central to my mom’s co-existence with her CI, was in accepting this hand, “being with” her reality. My mom simply couldn’t muster up the energy to fight it for three decades. Tough balance, that one is. How do you accept what is so, and also hope to be rid of it . . . at the same time? I wish I knew.
    xo

    Reply
    1. joslyne Post author

      Thanks for this, Lisa. You just articulated what I was trying to get at: “how do you accept what is so, and also hope to be rid of it . . .” Hopefully I’m going to learn how to balance this better . . . or even at all. 🙂 Thanks for commenting! xo

      Reply
  3. Sarah

    I feel your pain and wish you all the best in your journey. I have a number of chronic illnesses as well and know the ups and downs of a life that wasn’t quite how I anticipated it to be. It can be so frustrating feeling like your never going to get better, or when you do finally have a good day, suddenly having a set-back which seems to re-start the vicious cycle all over again. The thing that has really helped me come to terms with it is to accept the things I can change and to also accept those which I can’t. When things are really bad, my mantra of choice is ‘this too shall pass’. From this, I’ve decided to ‘make friends’ with my conditions and accept that I have them and that I can try my best to live with them whilst knowing that I can’t really change them. With a friend you can be yourself, and accept who they are without judgement. This removes the emphasis on a cure (which I found quite backwards, because we are always told to not give up hope) but by taking away the hope of a cure, you are forced to accept what is and deal with it the best you can. That has been most helpful for me to move forward and have a new ‘normal’ life. All the best

    Reply
    1. joslyne Post author

      Hi Sarah, Thanks for your thoughtful comment. 🙂 I also often use the mantra “this too shall pass.” It is actually very comforting to know that how I feel now will not be exactly how I feel in 10 minutes, 10 hours, or 10 days. I’m very intrigued by the idea of making “friends” with my illness. My instinct is to fight against that thought but, as I said, I’m tired of the fighting all the time. I do love the idea that with a friend I can be myself. Maybe I can go for “fond acquaintance” and work my way up to friend . . .? The book, “How to Be Sick” arrived at the library today so all I have to do is pick it up and . . . make friends with it. 🙂 Thanks for sharing! This comment made my day! xo

      Reply

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