Building Chimneys: Connecting and Confessing to Other Spoonies

Spoonie Slumber Party

Spoons in pajamas with birds and a tree in the background.

I recently had a Spoonie friend stay with me for a week.  It was wonderful.  Yes, it took spoons to visit with her, but everything in life does.  And even though it might have been physically draining, it was emotionally refreshing.  Plus, as someone who also lives with chronic illness and pain, she overlooked my cluttered home and helped “host” herself without a hint of judgment.

Bottled Time Chronic Illness Terms. Spoonie - person with chronic illness, pain, or disability (esp. invisible); Dish - A Spoonie's spouse or partner; Normie - The average person not affected by chronic illness. "Spoonie" is from The Spoon Theory ButYouDontLookSick.com

For those new to Bottled Time, here’s some definitions that will help you better understand the posts.
For the regular Bottled Time Travelers, take another look at that adorable dish and spoon. “Ahh….”
Ok, everyone ready? Onward and upward!

My friend and I spent most of our time lounging in our pajamas in the living room.  It reminded me of sleepovers spent with the girlfriend you would call immediately after getting off the bus, even though you’d just spent all day with her in school.  The one to whom you could tell anything because there was a part of you that she understood in a way that no one else could.  Except, instead of whispering about our crushes over cups of hot-cocoa snuck in the middle of the night, we were discussing our illnesses and their reverberating effects on our lives and psyches while sipping semi-illicit glasses of wine in the afternoon.  Symptoms, treatments, relationships, thoughts, feelings, individual and global philosophies – pretty much anything remotely related to being human was on the table.  Heck, we even discussed being non-human as we flew our geek-flags and watched an entire season of The Vampire Diaries.  The conversations were ones that would have sent most Normies running for the hills.  They included things that we’d barely admitted to ourselves, let alone to our husbands.  And like drinking vampire blood, we both walked away from the experience feeling refreshed and invigorated.

The Smoke-Filled Home

Clip art of man with zipper on his lips

Image found on ActiveRain.com

Why were these conversations so renewing?  Like I said, many of the things we discussed we hadn’t fully admitted to ourselves.  Or they were topics we tried to avoid in everyday conversations.  Common sense and experience teaches us Spoonies that launching into a litany of our physical symptoms and their corresponding emotions is not “polite conversation” and leads to jilted interactions and the loss of companions.  Not even our dear Dishes can take all of “it” all of the time.  So, for the most part we zip our lips. Even though we’re dealing with it in one way or another all day every day, we find that to maintain relationships and the general progression of life, we should talk about it as little as possible.  But in these situations, we become like a house without a chimney.  Our symptoms, thoughts, and feelings are burning within us.  The smoke is multiplying and has nowhere to go but to fill us with its choking darkness.  As we’re enveloped in that ashen fog we start losing sight of the positive things in our lives.  Our rationality and understanding of chronic illness and its cyclic nature gets obscured.  Evil thoughts begin to whisper to us from the fire’s embers and we feel alone, a little crazy, and ready to “Abandon all hope ye who enter here” (Dante, Alighieri; The Divine Comedy).  Opening up to another Spoonie builds the missing chimney.  We can breathe.  We no longer have to endure this overwhelming part of ourselves alone.  The evil thoughts lose a bit of their hold and we gain some strength.  With our freed up power and energy we might even be able to take the next step and install a window in our home to let in some sunshine.

Confession is Good for the Chronic Soul

Country cottage with smoking chimney.

Image found at LonelyPlanetImages.com

We need other Spoonies in our lives.  We need to build chimneys and let out the smoke.  We need to install windows to refresh our soul.  With all that in mind, I’m starting a new section of this blog where we can do just that together.  I invite you to whisper your chronic secrets to the Bottled Time Family.  These can be anything that you’d like to say to another Spoonie directly or indirectly related to your illness or condition.  As I’ve said elsewhere, chronic illness is not all we are, but it does affect every aspect of our lives.  Maybe you’ve tried eating toilet paper because someone on a plane once told you her grandmother was healed of all illness after eating 3 rolls of two-ply.  Or perhaps you sing “Mary Had a Little Lamb” before each surgery because you believe it’s good-luck.  Whatever your situation, it’s time to uncork your confession and pour it into an email to BottledTimeBlog@gmail.com.  Preferably add your own artwork, but if you’d like me to add some for you I will.  Let me know whatever, if any, identifying information that you would like posted with your confession (ex. name, location, illness, age).  Confessions can be completely anonymous.

I will post these confessions as most confessions are stated, quickly and simply.  They will not have my usual essay-style (after this one) or plethora of related links.  I will however put a few questions for thought and discussion to help Spoonies connect and build their chimneys.  As Home-Depot says, “Let’s build something together.”  I say let’s make it a chimney.

Uncorked Confessions #1: Fear of Failure

To get us started, here’s one of my confessions.  It’s one of those evil thoughts that whispers to me from the embers.

I fear that I am failing being sick.  And that I no longer know how to be well.

Chimney Questions:

  1. How do you feel you are doing being sick?
  2. If you were magically well tomorrow, how would you handle it?
  3. What do you think it takes to be sick “well?”

Feel free to respond in the comments section below or join in the discussion on the Bottled Time Facebook Page.  You can also find Bottled Time on Twitter (@BottledTime) – a great place for connecting and building chimneys!

*Note – you can now use your Facebook or Twitter profile to comment directly on this blog.  Thank you WordPress for making commenting easier!


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11 thoughts on “Building Chimneys: Connecting and Confessing to Other Spoonies

  1. Tosha, I am so pleased to see you posting again, and this post was well worth waiting for. The chimney analogy hits home — truly heartfelt. And I’ve had Dante-mind — thought for a few years it was permanent. Realizing the impermanence of that mindset is one of the big things that helps me live sick “well.”

    If I awoke magically well tomorrow, I’d handle it as the easy event ever in my life. How easy would it be to walk out free of an enemy’s torture chamber a completely healthy, uninjured, innocent “Normie?” I would be the happiest boy on the planet!

    Being sick, somedays I’m a work in progress, and others I actually get to progress in my work.

    Oh, the other big thing that helps me live sick “well” is allowing for dog days — get petted, eat as much as possible, love and be loved, sleep alot, and dream about a leash-free world.

    All my best to you,
    Cary

  2. I think I fear the fear. If I were magically well tomorrow, I would be like that person who walks out of the torture chamber but is still afraid of the bumps in the night. Life has taught him that the unimaginable can happen. I think I would worry about conserving spoons or that the other shoe is going to drop at any moment. And if we get to the heart of it, sometimes those evil embers tell me that I am not chronically ill, I’m just lazy. If I were well tomorrow, would I have the ambition to carpe diem, or would I be shown to be truly lazy? Evil embers, somebody should stomp them out – I’m working on it. “Be your own best friend,” right? I would never tell a friend in my situation that she was lazy.

    I really like the work in progress/progress in your work balance & the dog days analogy. Eleanor does love the off-leash doggie parks. Hopefully I’d be like her – a bit timid at first and then tearing up the place until I’m ready to collapse from truly earned exhaustion.

    Thanks for the comments Cary!

  3. If magically healthy, I think of being healthy as before being and knowing sick. Why limit the magic? I’d have same tiny fears that I had as a Normie. And we both know you aren’t, haven’t been, and would not be lazy. This is certain. A spoonie secret: we can never confuse being ill with being lazy. One who fights for life as hard and bravely as you leaves no place for the existence of laziness.

    All my best to you,
    Cary~

    • Thanks Cary. A work ethic and aversion to laziness were ingrained in me as a child and are naturally part of my personality. Prior to CI I was always “going.” It is hard not to look at my slower pace and diminishing productivity with disdain when I compare myself to the former me or to other Spoonies that I view as “doing it better.” I’m slowly getting better at not comparing myself to others. Two steps forward, one step back.

      • We have exactly this in common. I fight it every day. Hang in there my friend. Comparison of ability is a concept we don’t need to pay any attention to.

  4. YAY for you blogging again! I missed you. 🙂

    I emailed you my confession, and I’ll answer your questions here:

    How do you feel you are doing being sick?

    I think I’m terrible at being sick. I’m selfish, and I get caught up in how unfair everything is too much. I feel entitled to health – doesn’t everyone? Being sick reveals what a bad person I am.

    If you were magically well tomorrow, how would you handle it?

    I’d be happy. I could do all the work I wanted to do all along. But I might secretly miss the attention and “laziness.” Not that being sick is ever the same as being lazy, but the “taking things slow” I guess is what I’d miss. If I was magically well, I’d feel obligated to work and work and work – probably until I made myself sick again.

    What do you think it takes to be sick “well?”

    Kindness and hope. That Disney Princess attitude. I think that the people I know who are sick “well” remind me of Snow White. Ever tranquil and hopeful in the face of adversity. A regal sort of inner peace.

    LOVED this post, Tosha. Refreshing, and as always, just the thing I needed to get me through the week. You’re so good at sparking conversation! To get comments on my blog, you’d think I was pulling my reader’s teeth out. I don’t know how you do it! Keep it up. 🙂

    • I often feel the same way – that chronic illness is bringing out the worst in me, instead of the best. Part of the reason for my “failure” confession. If adversity is supposed to reveal our true character than my character is…well, I certainly wouldn’t be a Disney Princess.

      Sometimes I am able to appreciate the moments of slowness that CI affords. I allow myself to enjoy them because I have CI and they’re necessary. However, there is something about appreciating the moments and moving at a slower pace that is overall good. I certainly admire those who do this in their regular lives and therefore exude that inner-peace. Hopefully I can come to appreciate a slow pace for its own merits and therefore would be able to enjoy its qualities if I were magically well!

      I’m very excited about your confession and the included artwork! I’ll email you to let you know when it will be featured on the blog. As you’ve noticed, chronic pacing means I don’t post every day. Also, remember that most of our target audience is dealing with chronic pacing themselves. Many will read and not comment, or they may comment at a later date. Posing questions can help initiate conversation. I also think the fact that people can now use their Facebook or twitter accounts to comment (and not have to make a WordPress account), will be very helpful. Keep writing and drawing! I for one enjoy it!

  5. If I was magically well tomorrow – id be ecstatic (havent experienced that emotion for a while – this is just a guess!) I think Id be praising god, thanking my lucky stars… and for about a month id appreciate EVERYTHING. Then after that Id probably morph into a normal, and take everything for granted again. :oD

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