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Counting My Spoons: Life with Ehlers-Danlos Syndrome

EHLERS-DANLOS SYNDROMEIn 2012, I was diagnosed with an incurable progressive disease called Ehlers-Danlos Hypremobility Syndrome. After struggling all my life with pain, dislocations and subluxations, migraines, stomach issues, multiple surgeries (nine to date) and so much more, I finally knew what was the root of my health problems. Ehlers Danlos Syndrome is a rare genetic collagen deficiency disease, and something I had never even heard of prior to 2012.  

Now, I have a name for what ails me, and I get up each day counting my spoons. The spoon theory is “a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are a tangible unit of measurement used to track how much energy a person has throughout a given day.”  

Even before I became a mom, I had to be a planner. I would take into consideration my activities scheduled for the day and calculate how badly they would affect me by that evening or the next morning. I had to do this to function day to day. It was a give and take relationship; my life had become measurable in spoons. 

Let’s say I start the day with ten spoons. Making breakfast, getting dressed, making the bed, and every other small task takes a spoon. And some things take more than one. Showering, for example, takes a few spoons and leaves me feeling completely depleted, overly exhausted and occasionally in hives. It’s not fun, so I shower at night, instead of during the day, to conserve my spoons.

When I was diagnosed, the doctors told me that women with the condition can suffer multiple miscarriages and have complicated, high risk pregnancies.  I always wanted to be a mother, so this was very difficult for me to wrap my head around. Happily, I’m now a mother – a single mother – to a thriving toddler, pushing through insurmountable pain every day, yet still putting my son first.

I don’t like for him to see me suffer, so I smile through the pain, and I fake it for both of us. He is a young impressionable child, and the last thing he needs is to be concerned that his mama is hurting. He deserves to grow, learn, and feel supported no matter what I am going through. This means that when I dislocate my knee crawling after him, I put it back in and slow down but continue playing.  It is not easy at all, and I have bad days where I meltdown. Every mom does.  

But when you are a mom with a chronic pain disease, life is harder, and you either stay positive, or you sink into a hole. I choose to stay positive, to count my spoons, and to surround myself with supportive, caring friends and family. Most of all, I choose him, my son. He is the reason I fight. On the dark days, where pain is all consuming, I choose to remind myself to be present.  

Motherhood comes with enough pressure as it is, but can you imagine having your hip come out of place, popping it back in and continuing on with your day?  It makes for difficult days, but, more than anything, I am thankful that I get to even be my son’s mother. I get to teach him and watch him grow. Every single day is special because I do my best not to take time for granted. Hug your children, try not to sweat the small stuff, and remind yourself that there are mothers out there who start their day yearning for more spoons.  

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