“Be careful of Mommy’s bad arm!” This phrase is often spoken in our household, sometimes lightheartedly, but it stings nonetheless.
Living with RSD/CRPS has been my reality for over a decade. It’s been a part of my life since before my youngest two were born, even before my oldest son’s memories began. My eldest daughter has vague memories of me being healthy, which I suppose is for the best—less painful than the vivid recollections of a more active me. I often wish she could remember me as I used to be: the mom who played in the snow, kicked a soccer ball, and swam with abandon. I know it’s selfish to want her to see me as I once was—before the disability changed everything—but I can’t help it. So, I tread carefully around those memories, like navigating a field of landmines.
This isn’t the first time I’ve faced mockery regarding my disability. Whether it’s impatient sighs from people in line at the grocery store or whispers about how long it takes me to get my items on the belt, the judgment is ever-present. It all began innocently enough—a workplace accident that escalated into RSD, a condition where my nerves are in a constant state of alarm, sending signals of pain to my brain. My arm feels perpetually injured, and every day I wonder how much pain I’ll endure. Will it be manageable, or will I find myself retreating to bed, unable to function?
There’s no fairy-tale ending to this story, but I keep pushing forward. I’m a wife, a mother, and I have aspirations of becoming a writer, dreaming of seeing my novels on the shelves—even if it means typing with one hand. My stubbornness keeps me motivated; I refuse to let RSD take away any more of my life than it already has.
I’m not graceful about my challenges. I struggle daily and often hide my pain from my family. I lie to protect them, so they see me as their mom, not as someone defined by a disability.
During a recent gathering, my youngest daughter was excited to join a new group at a church basement. Unfortunately, the dampness there triggered an uptick in my pain. As I tried to help clean up, I apologized to another mom nearby. “Oh, I know,” she scoffed, her tone dripping with disdain. “Your arrrrrm.”
Those words cut deep, leaving me feeling humiliated, as if I had been slapped in front of my child. This wasn’t the first instance of being mocked for my limitations; it’s a reality I face often. But I keep going, determined not to let RSD take any more from my family. I remind myself to take it five minutes at a time until I can breathe easier.
My children deserve my best, and I won’t deprive them of that. In a sweet moment, my youngest reaches for my hand, hesitating as he looks for my wedding ring—the sign that it’s okay to touch me. When he squeezes my hand and says, “I love you, Mommy,” it reminds me why I fight against RSD every day.
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In summary, living with a chronic condition like RSD is not only a daily struggle, but it’s also a journey filled with moments of resilience. Despite the mockery and challenges, I remain committed to being the best mom I can be for my children.