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I Constantly Wonder What It Would Be Like to Be Healthy

Some people don’t know what it’s like to be stuck in a fragile body with a soul that longs for adventure. I miss the little things I used to enjoy, like playing in the rain. But now? Rain causes pain and my heart shatters every single time. The part of me I was before Ehlers-Danlos syndrome and fibromyalgia still lives within me. I get giddy and excited when I hear thunder, but then the debilitating pain starts.

I constantly wonder what it would be like to be healthy.

To never know what a flare felt like, or to dance in the rain once more.

To only need annual check-ups and to not know I can swallow a handfuls of pills at a time.

To dance again without worrying about my balance or the risk of dislocating/sub-luxing my hips and knees.

To enjoy sunshine on my face without overwhelming nausea and mast cell activation syndrome flare.

To play in the snow without a flare that can last weeks at a time.

To not see uncontrollable sadness in a loved ones’ eyes when you tell them you can’t get out of bed.

To not be pitied when people find out I’m sick.

To never know what it feels like to hear someone utter the words, “Well, you don’t look sick.”

I want to know what the good things feel like again.

When my colitis was bad, I at least had more mobility in between flares. Not that colitis doesn’t feel like hell, but at least I could walk to the toilet without fear on injury. I know with these issues I’ll never know what these things feel like again. There is no remission, no cure, hardly anything that helps, and little known of the causes. I’m afraid to leave my bed out of fear I’ll hurt myself once more. I’m afraid to see doctors out of fear I’ll be diagnosed with a new illness. I’m afraid of making plans since most times I end up having to cancel.

I’m tired of being afraid.

If I had one wish, it would be to be healthy. I’ve been fighting illness since birth; I’ll be fighting until my death, but at least I know I never gave up. Being sick isn’t a death sentence for me, but feeling like a caged bird in my own body is overwhelming most days. I try my hardest to stay positive, but I can’t always be strong. I get weak, I cry, I pick myself back up, and I try again. This is a cycle in my life I feel I’ll never be able to break.

I am a spoonie. I’m a zebra. I am a fighter. I am a warrior. Once my journey is finished, I’ll know peace. When the good days come, I welcome them in a warm embrace, but they’re so few and far between now. I long for a body that doesn’t feel like a prison, but I’m grateful I’m alive. I know love; I’ve seen beauty, and I know I’m here for a purpose. Maybe I won’t know why and what it all means until the end. But until then, I push forward.

Fellow spoonies, know that we may hurt, but we are warriors. We battle our bodies daily and every day, we win. Remember that.