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Chronic Illness Curve Ball ⚾️

You ever live your life wondering where you’ll go next? What’s in store for you? It’s just so amazing to wonder and live it out to see. Like an awesome game of professional baseball. Two teams going at it, bottom of the ninth inning, so close to winning(feeling better), you and your team could win it all. Bases loaded, 2balls 2strikes..crowds roaring. It’s all on you. Literally. You don’t know what’s going to happen next. Awesome right? Wrong.

Well that is definitely true for a lot of people but for those of us, most of us who are chronically ill it is not in a “yay, let’s see where this takes me” kind of way. This is an “I’m genuinely scared and don’t know what’s going to happen to me next” kind of way. Not knowing what i’ll be thrown next makes being chronically ill all the more difficult. Each pitch thrown at me is different from the last just like each flare gets harder to figure out.

So I’m sitting here on my couch in my living room watching my favorite Marvel movies, (that’s a given, I know) not expecting anything new which is obviously ridiculous of me to be thinking that way. Sometimes my pain is at a good level that I’m curiously optimistic thinking it will last or I’m expecting my usual conditions all flared and they have lots of room to become more before I ever get to fall asleep. I’m used to it right, people think we should be. Being stuck between first baseman and second. Between two different flares or multiple..then BAM, something hits me and makes me double over, fall down, fetal position, I cringe, bellow out in tears. Sometimes the full body soreness and bruising is like I’ve been hit by an automatic pitching machine. Sometimes under my skin I feel burning as if I didn’t wear my sun screen the whole day. Some days it’s hard to see because the sunlight is in my eyes and it’s blinding me, too painful to look at but that’s not sunlight it’s just the lamp light and it’s somehow become intolerable. The sound of the tv is blaring in my ears like a crowd when they holler as their favorite pitcher takes the mound but moments before it was fine and on low I might add. Now suddenly it sounds like i’m standing in front of a large amphitheater speaker and it’s blaring in. my. ears. My heart is pounding because I didn’t move at all. Which is funny because it feels like I’ve got up, ran around all four bases and sat back down real fast. The dirt and grass stains are from not being able to shower as often as i’d like. The gear bag with all my equipment is like an emotional bag of “feelings and words” I try not to express. I’m not playing a full game of real fast pitch but my body thinks it did. Here and there I get new symptoms, new pitches to memorize, new players, new opponents..guess what it’s another ailment, symptom or side effect from my medications. I’m thinking to myself, “Oh great” another obstacle I have to to learn to go through (over again and again,) before I can even get to home plate.” Which for me is a good pain day. Yes I just said Good Pain day is my Home Plate. That’s when my pain is tolerable. It’s in my mind but still not enough for me to give in. So I keep on playing, trying to steal another base. Trying to steal time with my family. My kids, fiancé and pets. Trying to be outside my home and pretend I’m “normal.”

This “shitty game” is just overwhelming. Here I was thinking I’d grow up fine. Id make it through this game we call “Life”. I’d live a “normal” life whatever normal even is because to me no one knows how to be normal. We are all different and we’re meant to be that way. Anyways, Here I was thinking my game would be okay and fun, maybe full of awesome cool memories..until the next pitch was let go and it hits me so hard I realize I’m playing a whole different ball game.

This isn’t fun. This isn’t a game. It’s not something I get to walk away from after so many innings. This is a lifelong tournament and I’m forced to run around all the bases with no Home plate to ever stop at. The Umpire and Coach is my body and it’s been paid off by my conditions. They make the calls and determine how my game goes. They determine when my innings(flares) end. The team is my doctors and specialists. All lost as to what we do next. No roster or game plan. No speech or motivational talk to direct us. When it’s my turn to bat, which are the short moments in between of me advocating for myself, I strike out. I foul..I take a walk. It’s very rare when I get a Home run hit (finally being diagnosed.) The Umpire and Coach aren’t ever happy and begin to yell and scream at me the moment I try to help myself. This chronic illness “game” is not a game I want to play anymore. I did not sign up to play this. I didn’t practice at all. I didn’t put a uniform on but some how they called my name and I’m out here running, giving it my all.

This is very hard, it’s never understandable and it’s never predictable. No two pitches are the same. It’s like the final hit of the game. You never know what could happen and you’re always on the edge of your seat, nervous and overwhelmed with gut wrenching anxiety. It’s the Curveball I never saw coming.

Xoxo The Chronically Ill Queen

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1 Comment

Dr. Bhagat
Dr. Bhagat
May 20, 2020

Wow. I've been dealing with my daughter's medical condition since 1996 when she was 8. I've experienced incredible pain as she has lived the journey you so well describe. But, as I tell her, even though I am the closest to her, I still have no idea what it is like to be in her shoes - or shall we say, body. Even I, who has advocated for young people with chronic conditions for over 15 years, know that we need to hear from you and the millions of others like you. You have a powerful voice and your experiences need to be told, need to be shared, need to be felt and need to be understood. I hope you…

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