A Day In The Life Of A Spoonie


I just returned home from a walk with my dog, Pedey. At 7pm, it's over 80 degrees here, typical for October in California. Pedey's cooling off on the couch, exhausted from the heat and our excursion. We've been going for walks lately, and, due to her excitement about being out in the world, sometimes we take off running. For such a tiny pug, she's surprisingly speedy!

Earlier in the day, I had responded to several unanswered emails and messages. I also reached out to a few new doctors and health professionals to figure out my next steps, and I did one of the scariest things I've done in ages: I called my old doctor, one who was the furthest thing from nice, to ask about obtaining my records.

I ate, I watched part of a movie.

Now I'm writing this piece.

This all sounds so minor to someone without a chronic illness. But the funny thing is, my life with Ehlers-Danlos Syndrome and Lyme disease hasn't been this active since... well, I really can't remember. It's been quite a while. The past several years have mainly consisted of appointments, Google, and Hallmark channel movies. Food has been a source of anxiety, fresh air and exercise intensified the ever-present headache pulsing through my skull, and Pedey and I spent most of our time on the couch, recovering from nothing and everything all at once. (She has a liver that misbehaves, and she came to us with a bald spot on her forehead, the origins of which are still unknown. She's my spoonie puppy partner in crime.) I longed just to go for a stroll outside, but the sunlight was too bright and the cars were too loud. I couldn't take it.

But, at least for right now, I can. And I am deeply grateful. I'm still not able to work because my symptoms have only improved in the last week or so, and my body is far too unreliable to even consider going for an interview, assuming I could score one. But I've made progress. For once, I'm not worse than I was a week ago, a month ago. These are tiny wins, but they are wins. I'm far from cured (the pain from running is uniquely deep), but there is life within me. I don't know when I've ever felt this way, like the hope I have is coming from me instead of from the outside world.

A month ago, I wouldn't have been able to submit any writing to The Chronicles of Babes. My brain wouldn't have entertained such an idea! And yet, here I am, joining this beautiful tribe of hopeful, resilient, engaging women who share these same feelings and experiences.

How fortunate am I?



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