Mar 10

So, What’s With All The Spoons?

I'm a Spoonie!If you know me, you may know that I’ve been dealing with issues that have caused me not to be able to work like I used to, a fact that drives me nuts by the way. This has been an ongoing situation for far too long, IMHO, but there is, unfortunately, no end in sight. I have not been able to accomplish so many things since I resigned my manager position in 2007, while pregnant with my youngest child. There is no feeling like that of feeling “useless,” especially when you have children.

Every spoonie has struggled with more than just the pain and illness they live with . . . We also have to deal with and accept that there are things we just can’t do and that, no matter how much we want to do, we will never get everything done. It’s just not possible. Out bodies simply won’t permit it.

“So,” I can hear you ask, “what does this have to so with spoons?” Well, to understand you should take a moment to read “The Spoon Theory” by Christine Miserandino. You see, EDS, like so many illnesses, is an invisible disease. You can’t just look at me and say “Oh, she has X.” No, it doesn’t work that way. Not for me, not for so many that suffer MS, Lupus, Crohn’s, and a plethora of other issues. 

If there’s any one thing you take away from my ramblings, please let it be this – no matter what you know or think you know, don’t even assume that someone is being lazy or whiny when they don’t keep up with the crowd. It’s not that we don’t want to, but rather we can’t. We simply don’t have enough spoons . . .

We may have to take things slow or not doing things we want – or even need – to do, but it’s okay. We are still the people you love and we still love you, even when we lean on you emotionally (or perhaps, it’s because we love you that we feel safe enough to lean . . .)

I hope you have an eternal supply of spoons and the heart to loan a few to your loved one that have to count theirs.

     I'm a Spoonie!       Aine

I am a wife, mother, author, and EDS (Ehlers Danlos Syndrome) patient. I have been married for 18 years, have six children and was diagnosed with EDS in 2007, after a lifetime of pain and doctors that could never find the root of my health issues. I now walk with forearm crutches thanks to arthritis and bone spurs in my back, and self-dislocating joints.

18 comments

Skip to comment form

    • Marika Weber on March 10th 2012 at 1:09 pm

    Great post. And you are correct about visibly not seeing other people. I have spoons to give and I have people that give me their spoons, too.

    Marika

    1. Thanks Marika,
      It’s hard to not have enough spoons but people like you make life so much better *hug* . . . Always there with a kind word and a spoon or shoulder to lend 🙂
      Áine

  1. Inspiring post. Thank you for reminding us how important a support system can be for each of us and that we should never stop caring.

    1. Thanks Toni!
      Support and understanding is vital. Thanks for caring 😀

  2. Awesome post! Great reminder!

    1. TY Martha.
      Just wish reminders weren’t needed . . .

  3. As someone going through her last round of chemo and a central nervous system disease that they thought was MS for 9 years and now don’t know what it is…I’m with you hon.

    Sometimes I need those spoons and sometimes I just want to curl up with a book and let others borrow them.

    1. 😀
      It’s hard to not just be ‘sick’ but to have no idea what ‘it’ even is. I was in my 30’s before they figured out I had EDS and that some of my ‘other’ health issues were side effects from the EDS. It wasn’t even my Dr apt, lol. Took my little girl to the genetic spec and he Dx’d us both.
      Hugs and light

  4. Anya,
    Take it easy, hon. Well be here when you’re ready for us. Sending you prayers.

    1. Thanks Maggie 🙂
      That means a lot, truly!

    • Ella Quinn on March 10th 2012 at 3:47 pm

    Great post. I have all sorts of spoons.

    1. Thanks Ella 🙂 Glad you have your spoons … cherish them

    • Casea Major on March 10th 2012 at 5:30 pm

    About three years ago I was diagnosed with Rheumatoid Arthritis, although now it presents more like psoriatic. I have the joint pain and immobility controled but the fatigue is yucky — especially with young kids.

    Aine – 6 kids is a mass of spoons by itself. Add anything to that and it goes up exponetially. I feel you, lady!

    1. Rheumatoid? Ouch!
      Pain and mobility is only somewhat… I can’t take most of the meds 🙁 and forearm crutches are not a fashion statement, darn it. But my kids love me and understand. Sadly, it’s genetic so most of them have it too (be since we know so young they can avoid all the stupid stuff that makes it worse. I didn’t know better, they do).

      6 but I love them! Even when I want to strangle them, lol. They are my own personal cheer squad (but don’t tell the boys I called them cheerleaders, lol)

  5. Aine dear,

    You are my hero! Don’t know how you do it, but you stay brave and make it work, reminding us that what we see is only an image. To find the diamond, you have to look beneath the surface. You ARE a diamond!
    Much love and lots of prayers.

    1. Thank you so much, Camelia.
      Some days are harder than others, especially bad days that also include other peoples false assumptions.
      Never give up, never surrender, right?
      Love and light to you 🙂

  6. Aine, it’s true. So many times we only see what lies on the surface. How we’re brought up has a lot to do with our view, too. People shouldn’t have to wear a sign around their neck advertising a hidden illness. My father-in-law, who’s in his 80’s and looks to be 70, walks and talks like a healthy man. He’s also legally blind with only peripheral vision. So when he stares at someone with his head turned to the side, he’s thought to be odd.

    This is a great reminder to never judge, and never predetermine people. Best wishes for a happy day, Aine!

    1. Thanks Sheri.
      I decided a long time ago that ‘freak’ and ‘weird’ were words to be proud of… I mean, who wants to be a cookie-cutter? But the near obsession for labeling and prejudging others is something that humans tend to do yet almost never understand how hurtful it can be.
      We may have a disability, but we are ‘disabled.’ I am not my issues but I am limited because of them.

      Thanks for seeing past the illness to find the person, I’m sure your FIL appreciates you for that as well 🙂

Comments have been disabled.

Follow

Get every new post delivered to your Inbox

Join other followers:

%d bloggers like this: