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Nov 16

Who needs more spoons?

If you’ve ever struggled to explain a disability or illness to others because you don’t “look” whatever they think is sick/disabled, then you probably know about the great little story called The Spoon Theory. If you are one of the fortunate, those that don’t have to worry about if they have enough energy, enough strength, enough _____ to get everything done you need to do in a day because of your health, congratulations!

What I wanted to share with you today is how The Spoon Theory  has affected me and mine. I struggled for a long time to figure out how to make others, especially those with good health, understand that I’m not being lazy, I’m not ditching out on them, and that I would really rather hang out/work/go out/etc. than be stuck at home because I’m simply too tired, in too much pain, well… simply do not have enough ‘spoons’ to get through my day. This is not the easiest thing to make others understand! Sadly, it’s been an uphill battle even within my family.

You see, as many of you know, I have a genetic disorder called Ehlers-Danlos Syndrome. Some days I have the ability to write, read, enjoy my children (as long as I don’t do too much physically), but others… and by far the greater number of days, I have little to no energy thanks to pain and exhaustion. When I began writing, I used forearm crutches and gave my first MC the same disorder I have. Now, however, I have been told that the crutches need to go away and I need to use a wheelchair almost exclusively. Talk about depressing. There are so many places I simply cannot go now, thanks to my chair. Many shops are not accessible. Others have isles/racks too close so I can’t look around within, even though I can get inside. And don’t get me started on the ramps around me! Ugh…. too steep and oddly banked! GRrrrrr

My point is not to make you feel bad for me, I don’t want that! But rather, to make others see that those of us that have to back out, that can’t do all the things we once did, don’t want to be this way and that we aren’t being lazy. I would invite each of you to take a couple of minutes to read The Spoon Theory and then see if you might think a little differently about those around you. See that the person at Wal-Mart using the electric cart, that person that doesn’t look elderly or disable, just might have something ‘wrong’ and really need that cart. That the person who rarely goes out, might need a friend willing to stay in and help them some…

There’s this great shop I found, I used them in Desires’ Guardian in fact, that makes spoon necklaces and such. I’d love to share that with you also. In DG, Chase wears a choker of a spoon from Sunshine Silverware! They’re a real thing and I simply love the wide variety of spoon items she has for sale.

I know I rambled a little, but I hope you find a new understanding for those that want to be “normal” because we want to do more, we just need more spoons in our day to make that happen. Winking smile

About the author

TempeO

Tempeste O’Riley grew up in the deep south and escaped her conservative, oppressive roots as soon as she could. Tempe is an out and proud omnisexual/bi-woman whose best friend growing up had the courage to do what she couldn’t – defy the hate and come out. He has been her hero ever since.

Though new to writing M/M, she has done many things in her life but writing has always drawn her back – no matter what else life has thrown her way. She counts her friends, family, and Muse as her greatest blessings in life.

4 comments

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  1. debfirpo

    Omg I totally understand! I have fibromyalgia. I’m not lazy, I’m so tired snd hurt so bad that I can’t go walking around through all the shops. It’s a struggle to do the grocery shopping. I still work but it’s becoming more than I can take. I love my job,I don’t want to lose it. People just don’t understand. Bless you. Gentle hugs!

  2. Betty

    Hi Tempest, here’s another fibro person for ya, I understand to some extent, not in a chair and I am sorry you have be, but at least your not a quad. Little blessings add up when you can think enough to count then. the exhaustion is a bitch, I’m too stubborn to take it easy when I know I should and that usually works against me, I got very tired, really damn quick, with the meds they kept trying shove down my throat and am using therma heat wraps, more expensive but do a lot of good, We run our own business so again I lucked out with that one, get tired? come in the house and watch some netflix maybe a couple of hours or occasionally a couple of days. I had to have the Dr. explain to the hubby (Mr. sensitive he’s not, but I’m keeping him and looking forward to another 39 years…..I know, when the hell did that happen? that means I”m how old?) So, you stick to your imagination, and just draft a new story or something when things get too much, I find a temper blast now and then relieves a lot of the “I have it soo bad blues”. And for those who look down their noses, or don’t have the capacity to understand everyone is different, well they can get the bird. Hang in there, take your joy and laughter where you find it, you just never know, that’s what makes things interesting don’t you think?
    jeez, this is turning into a lecture. hang in there, think up more lovely stories for us all to enjoy! a huge hug….and am going to check out sunshine silverware…
    Bett

  3. debby236

    While I do not have as debilitating a problem. I do have asthma and more allergies than I can count. I cannot wear makeup and get a tattoo, and have to buy special clothes detergent, shampoo and even deodorant. I need to know what is in my food. I cannot just try and I’ll like it. I do not eat certain foods because I do not like them but because they do not like me.

    One of my daughters is an amputee, another severe asthmatic and the third has a skin condition. Life is never easy when you have extra thrown at you. I wish you all the best in life.

  4. Kathryn Ruffins

    Thanks, as a person who deals with arthritis and mental illness, this is so on point!

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