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So I married a superhero…

02 Dec

By now most of you know that my wife, Rhonda, is American, but what you may not know is that she’s also a superhero.

She is Spoon Woman.

When I got to know Rhonda, over five years ago now, she was just another American I could playfully wind up on Facebook. She was introduced to me by a mutual acquaintance and we soon became good friends, finding common ground in politics, music and literature, amongst other things. 
Even more amazingly, she shared my sense of humour and found my first forays into the writing entertaining, saying nice things about blog posts I sent her and generally coming across as one of the more sane and well-balanced Americans that I’d met, during my initial exploration of the internet in general and Facebook in particular.

She also told me she had fibromyalgia.

Ok, I’m guessing that if you know as much about fibromyalgia now as I did then, you’re probably reaching for a dictionary, or more likely opening a new window so you can Google it. So let me save you the trouble.

Have you ever pulled a muscle, or had cramp? 

Of course you have, everyone has had those “Uh-oh!” moments, the ones that result in you suddenly hopping round the bedroom at two in the morning, swearing your head off and trying to straighten your toes. Or that horrible sensation in your back when you try lifting something just that fraction too heavy and realise too late that you’re going to be wincing every time you bend over or get up from a chair for the next week.

Well, imagine that feeling, but all over your body.

All the time.

You can’t, can you? You literally cannot imagine it, because your brain quite rightly won’t allow you to synthesize that experience, any more than you can really remember just how bad toothache is. There is a failsafe in your brain which stops you experiencing pain, except when it is received as the kind of emergency warning signal that it’s designed to be.

If you put your hand in a fire, your brain tells your hand that it’s in pain, because that’s the quickest and most effective way to get the idiot who put it there to take it out.

Except that isn’t quite right. What’s actually happening is the nerves in your skin are telling your brain that your hand is burning and your brain, in reply, is telling your hand that it’s in pain.

But what happens if your nerves tell your brain that your hand is burning, even when there is no fire? What happens when your nerves tell your brain that your whole body is burning?

Put simply, Fibromyalgia (or “fibro” for short) does basically that; it causes neural transmitters to constantly send false positive pain signals to your brain, resulting in permanent, chronic and sometimes seriously debilitating pain, everywhere at once, all the time. The very idea of it is terrifying to me.

When Rhonda first casually mentioned her condition to me, during a chat on Facebook,  I didn’t quite know how to take it. I mean, here was a woman who looked after her daughter on her own and ran a special needs residential care home and seemed to work eighteen hour days, almost every day; that didn’t seem like someone who was in constant pain to me.

Maybe, I thought, you can just have “mild” fibro, perhaps it wasn’t all that serious after all. But that only went to show how little I knew of Spoon Woman’s abilities.

Rhonda once told me; “There are three ways fibro can affect you; you can let it take over your life, just lay in bed and give up; you can moderate your lifestyle to alleviate the impact it has on you; or you can just get on with it. I decided that I was going to just get on with it and I wasn’t going to let it affect my life.”

I was awed by her attitude at the time, having never met her in person and only having known her a short while, but I just accepted it and thought no more about it.

Fast forward a few years, she and Audrey are here in the UK, we’re married and Rhonda is working full time at the local chip shop. A dream come true.

Except that isn’t quite right. Dreams-come-true don’t usually feature constant pain, at least mine never have.

You’d never know to look at her, that Rhonda was anything other than the perfect loving wife and doting mother. She cooks, she cleans, she does laundry like there’s no tomorrow, anyone would think she was addicted to housework. You’d never know she’s in discomfort, that her myofascial tissue is screaming blue murder and her skin itches so badly she wants to scratch it off. You’d never know the muscles in her back are locked into solid knots, so bad she has to lie on a deep tissue massage roller in the evening to release the pain, or that she has hypersensitive pressure points on her skin that can deliver bolts of agony if touched.

You’d never know, because she is Spoon Woman and she knows how to best use her spoon supply 

When I was going through one of my regular fibro Q+A sessions with her the other day, Rhonda asked me if I’d ever heard the spoon analogy. Funnily enough, I hadn’t.

Imagine you have a finite supply of spoons and you need to “spend” a spoon in order to have the energy to do everyday activities: 

Get out of bed – one spoon. 

Take a shower – one spoon. 

Get dressed – one spoon.

Get the kids off to school – one spoon.

Drive to work – two spoons. 

Find somewhere to park – one spoon, etc etc…

The secret is, to portion out your supply throughout the day, so that you don’t find yourself out of spoons when you still have stuff you need to do. And, like the energy boost tokens you pick up in video games, extra spoons may be obtained through napping.

Naps are sacrosanct in our house, I’ve learned to respect the power of The Nap. And I collect spoons, too, in my way. 

If I see laundry that needs doing, or if I can take Audrey out and leave Rhonda to nap in peace, if I have time to do the housework before she gets home from work and insists on getting the vacuum cleaner out, then that’s one more spoon I’ve saved for her, so we can enjoy the times we have when we’re all here together.

I’m still awed by her, my superhero wife, now more than ever, as I learn more about what she has to deal with, every hour of every day. Because, like all of the other, secret and silent superheroes with “invisible” illnesses, to look at her, you’d never know.

{To read about the origin of Christine Miserandino’s  Spoon Theory in full, GO TO THIS LINK}

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27 Comments

Posted by on December 2, 2016 in aardvark, Blogging, Personal anecdote

 

Tags: , , ,

27 responses to “So I married a superhero…

  1. John W. Howell

    December 1, 2016 at 22:51

    Touching story. Thanks for sharing.

     
  2. Playamart - Zeebra Designs

    December 1, 2016 at 23:50

    That has to be about the sweetest, loving a genuine tribute that can be written. it’s from the heart – not enough people are comfortable being candid and refrain from sharing kind words about a loved one.

    You probaby know the history of this song, which seems appropriate for your post:

    Lisa

     
    • dalecooper57

      December 2, 2016 at 16:54

      Thank you Lisa. I don’t know the artist, I’ve never heard the song, nor do I know the history, but I shall research it immediately.

       
      • Playamart - Zeebra Designs

        December 2, 2016 at 20:07

        you are in for a treat with his music… his wife suffers from auo immune – i think- and ‘her diamonds’ are the tears….

         
  3. BarbCT

    December 2, 2016 at 01:38

    What a beautiful tribute to your wife. I, too, am a “spoonie” since the mid-1980s, so I know what she goes through. You are a rare man, my friend.

    Now, please suggest to Rhonda that she go to http://www.ldnresearchtrust.org and learn about the use of low dose naltrexone in the treatment of fibromyalgia and other autoimmune disorders. The Trust also has a Facebook group and a channel on video . com that has loads of testimonials. There are also some videos on YouTube.

    Let me tell you why I suggest this. One year ago my daily spoon supply was very low. I often had to use a cane and certain weather shifts could make me bedridden, as would overexertion when I did have energy. Thanks to LDN, I no longer use a cane, I rarely have to take pain meds, weather shifts don’t affect me much, and my recovery time from overexertion is less than 24 hours (as opposed to 3+ days before). And I’m still improving.

     
    • dalecooper57

      December 2, 2016 at 07:55

      Thank you Barb, that’s very useful, I’ll tell her.

       
  4. BarbCT

    December 2, 2016 at 01:39

    That’s supposed to read Vimeo.com, not video.

     
  5. Bee Halton

    December 2, 2016 at 10:09

    Sending healing energy to your wife. What a great post and thanks for explaining fibro.

    My husband is in constant pain with his back. He had an accident many years ago when he was a fireman but he deals with everything the same way than your wife. And I collect spoons for him as much as I can :-). Have a great weekend!

     
    • dalecooper57

      December 2, 2016 at 11:01

      Thanks, Bee. All the best to your own superhero

       
      • Bee Halton

        December 2, 2016 at 11:07

        Thank you!

         
  6. Dan Antion

    December 2, 2016 at 17:52

    Sweet – By the way, the email link to this was off by a day. You may have lost some readers who were met with a 404 error.

     
    • dalecooper57

      December 2, 2016 at 18:25

      Really? That’s odd.
      The original notification e-mail link was dead?

       
      • Dan Antion

        December 2, 2016 at 20:04

        Yes – it was off by on day -01 vs -02

         
      • dalecooper57

        December 2, 2016 at 20:23

        Hmm, ok, thanks.

         
    • dalecooper57

      December 2, 2016 at 18:28

      I’ve been having some odd WordPress glitches recently, including the sharing to Facebook option stopping working got no reason, whereas before, all my WP posts were shared automatically to my Fb account, now; nothing.

      But I’ve not had actual blog posts go missing before.

       
      • Dan Antion

        December 2, 2016 at 20:06

        This happens a lot with blogs I follow. Maybe not “a lot” but once or twice a week. The URL will be 2016-12-02 and the link in the email is 2016-12-01.

        I’ve learned to got to the blog’s main page and look for the current post. I wish they let us customize the 404-error page (maybe they do).

         
      • dalecooper57

        December 2, 2016 at 20:25

        I do occasionally get e-mails telling me a blog has posted, then get the “oops, nothing there” message, come to think of it, I’d never thought to check the homepage, I’d always assumed it was a deleted post.

         
  7. Charlotte Hoather

    December 2, 2016 at 21:08

    Awesome ❤️ I love your true life love story, I wish you both lots of extra spoons xx

     
    • dalecooper57

      December 2, 2016 at 21:16

      Aww, thank you Charlotte, you’re very sweet. Did you read the full story on the other blog?

       
  8. willowdot21

    December 2, 2016 at 21:29

    You are right she is a superhero and like all super heroes she just gets on with life! Power to you both!! xxxxx

     
    • dalecooper57

      December 2, 2016 at 21:46

      Thank you.
      Rhonda is very touched by all the comments, she doesn’t think she’s special at all, but we know better. ;~}

       
      • willowdot21

        December 2, 2016 at 21:59

        Yes we do !!

         
  9. Lori Carlson

    December 6, 2016 at 00:42

    Such a wonderful post about your brave wife.. my sister has fibro and she is in pain all the time. It’s true, she has to use her energy selectively in order not to run out by the end of the day.

     
    • dalecooper57

      December 6, 2016 at 07:56

      Thank you, I hope your sister finds ways to cope.

       
      • Lori Carlson

        December 6, 2016 at 17:39

        You are most welcome and Thanks Guy 🙂 she takes way too much medication and soaks a lot in the tub. Helps some, but she is a full time nurse, so it’s hard on her

         

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