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Grace Under Illness

Feb 9, 2011

I come from a family with a long, proud tradition of talking about how much they help people and using many words and craftily placed mirrors to perpetuate this charade, but whose behavior has seared one lesson deeper into my psyche than any other: “You’re on your own, Kiddo”.  If I’m not mistaken, it’s spelled out in Latin on our family crest :-/.

So, from an early age, I’ve been an overachiever, a control freak, a failed perfectionist, and a royal pain in the butt, at times.  I have taken care of myself, my children, needy siblings, sick relatives, and strangers who were down on their luck.  It’s what I do… I take care of things, of people, of problems.  Or, it’s what I used to do.

Part of living with a chronic illness is learning to accept the reality that you are no longer the person you once were, then adjusting to a new identity.  I went kicking and screaming into my ‘new identity’ and the surreality of being told that No, there’s nothing we can do for the pain or fatigue, it’s time for you to learn how to live with it.  Forever.  I knew that’s what the doctor said, but I figured that wasn’t what he meant.   Not really.  It’s not like he meant FOREVER forever. 

Twelve years and 9 months ago (though it took about a year to actually get a Fibromyalgia diagnosis).  Sometimes it feels like forever.  A car accident that would be described as ‘minor’, except for the pain that never went away.  The inability to sleep.  The inability to stay awake.  The inability to get things done or to ever be that version of me again.

THIS version of me has to learn how to accept help.  And you know what?  It’s soooooo much harder than giving help, than taking care of things.  I don’t like it, nope, don’t like it at all.  But when the Fibromyalgia Flare Demon comes and knocks me down, I literally do not have a choice.  As a control freak, I really hate that… but I’m learning.   And I’m trying so hard not to be a royal pain in the butt while I do.

But maybe I’m looking at this the wrong way.  Maybe my husband feels more needed and more loved and more vital during one of my flares.  Maybe he needs to give and I need to shut up and just gracefully receive.

<< so difficult >>

I am now at the brighter side of my flare.  I am moving and standing without help.  Heck, I vacuumed today!  My husband and I are able to look at each other without the pain, the concern and neediness between us.  Though we’ve known each other a long time, we are still newlyweds and this interdependence thing has a learning curve that can do without the addition of a flaring chronic illness. 

Ultimately, though, this situation helped us to grow closer.  I stopped fighting and gratefully accepted help, along with the fact that the house was going to be more messy than usual while I was stuck in one place – able only to stare at the dust, not clean it. 

So, yes, this version of me can’t do half as much as I used to do and I often wonder about my ‘purpose’ with a 12-year-old identity that STILL feels foreign, but surrendering didn’t feel like defeat this time because my husband and I went through my flare together.

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10 comments

  1. This is just a stunning post! Half of it could be said about me… and the other half I REALLY ought to listen to hehe ;) I’m glad I happened by your blog and will definitely be “watching”.

    To learning curves, glasses half full and grace under ANY kind of struggle ;)

    – Rayn


  2. Wow, thank you, Rayn! :-) Sounds like we have something in common, and you’re right: ANY kind of struggle deserves a good toast!

    I need to listen to my own ramblings sometimes, too – especially since writing will capture an emotion from a particular moment or day, but all too often, I will lose it and need to be reminded. (“Gratitude?? I’m not feeling all that grateful about ______ right now!” This could easily be me, too.)

    Thanks for stopping by!
    Debi


  3. Hey Debs,
    Great post and I understand where you’re coming from. I don’t have any chronic health issues but a very close friend of mine suffered TBI as a result of a car accident. And she struggles with this very thing daily. I think I’ll send her over her to read this. So great to see you back – missed you much.

    Hugz,
    Annie


  4. Hi, Annie! So good to see you here :-)

    Hope your friend has more good days than bad. I’d love to hear any input she has, as well.

    Missed you, too… It’s good to be back :-)


  5. Great post! You’re right…after being that care giver it’s so insanely hard to be the one being cared for. That mentality of ‘I can do it myself’ may never go away. It’s hard to HAVE to become someone new, someone you didn’t choose to be. Sounds like you are figuring it out though! With someone wonderful in your life! I cannot imagine not having someone wonderful there to help me through. We got lucky that way and that is definitely something to be grateful for!


    • Hey, Leana…
      You’re absolutely right – I don’t know how I’d go through all these changes and the mental anguish that comes along with them if I didn’t have someone wonderful to help me through it all, as well as the special comfort of God when I choose to accept it (and not indulge in my Mr. Hyde persona where I shake my fists at the sky, asking “Why, why?”)

      I’m glad you have a special someone to help you walk this challenging road with.

      Peace,
      Debi


  6. love this post debs xx


    • Hey, Kitty…
      Thanks so much <3
      (Hope you're not going crazy without sugar in your life :-o More power to ya!)

      Debi


  7. the first thing i did after i logged in?? dropped in here. :D im glad i did. love your posts as usual debbi. take care…

    P


  8. Thank you very much, Nanny! Sorry it took so long to acknowledge your comment – had surgery recently and am trying really hard to get back to normal (or my version, anyway :-))



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