Spoonie, Chronic Illness, POTs
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Living with a Competitive Body

How I manage chronic illnesses that slow me down in a fast-paced world.

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Living with a Competitive Body

My memories of those first few days are foggy and scattered, as I cling to the bannister in the east stairway of my high school. I shake nonstop, as I attempt to descend the flight of stairs after my last class of the day, Creative Writing with Mrs. Lytle; I barely make it to the bottom when I forget where I am all together. I am hospitalized. I am diagnosed. I am re-hospitalized and re-diagnosed. My medicine lists grow and change and change again to adjust to my changes.

As though my life is a Wikipedia article, subject to continuous edits, I have "you can contribute to this list by adding to it" written across my forehead. After three years of doctor's appointments, I have been diagnosed with the following: Postural Orthostatic Tachycardia Syndrome (POTs), Ehlers-Danlos Syndrome, and Mast Cell Activation Syndrome (MCAs). Unlike my initial diagnosis of POTs, the illnesses that followed were less of a "discovery" and more of a "confirmation" of symptoms I already had. The diagnoses did not come all at once, but one after another like a procession of slow moving cars, with Mast Cell Activation Syndrome arriving almost three years after the first. With the new arrival of the already expectant MCAs came two new medicines to add to my daily cocktail.

While taking six pills in the morning (excluding the one I need to take every four hours to raise my blood pressure) is not where I saw myself three years ago, the addition of the life-saving medicines in my life has given me back a piece of who I was before. The combination of prescription drugs, vitamins, and over-the-counter medicines combats the worst of my symptoms, while I fight everyday to push myself to do more than the day before. This rigorous competitive drive, while responsible for a good amount of my progress, often leads me into episodic setbacks; knowing that I am so much healthier than I was years ago, I find myself pushing my body to the absolute limits, until it gives out under the self-induced pressure. It takes the gentle reminders of my friends, family, and loved ones to prevent this from happening everyday, but the need for success still revs its engine throughout my core.

On the days that I listen to the horsepower of my body, responding positively to the medicine and progress I have made, I go for a run, wake surf, or exert myself in some fashion that I will most likely regret later. My muscles ache in protest, my hip bones shift from their correct place, and my heart beats like hummingbird in my ear. I will spend three days recovering, and still push myself to do it all over again until I am blown out and hospitalized. No matter how sick I get, I remind myself you have been so much worse, and I push harder, because the same competitive soul that fights my friends in video games is the one that fights myself.

For the inevitable days of pain and discomfort that follow these competitive bouts, I have created a loosely ritualistic recovery method. Whether it be a day out in the summer sun, a jog down the street, or any other physically exerting activity for someone with chronic illness, I take precautions prior and address issues that arise following immediately. Unspoken and unwritten (before now), I repair my body through things I have accumulated over the past three years:

  1. Hydration. One of the most important things for someone with POTs is to stay as hydrated as possible (this is also just a rule of thumb for anyone, sick and healthy alike). While I can guzzle two bottles of water in one sitting, I will end up needing to use the bathroom constantly if I do so. On the days of recovery where I am bedridden, this isn't necessarily ideal. To combat this, I suggest using Nuun Tablets, or the powder-version of Liquid I.V. Hydration Multiplier. Both contain electrolytes that help hydrate you faster. While it is no substitute for the real thing, it can help your body be as hydrated as you would be drinking more water without having to do so.
  2. Rest. This one is obvious, and the most important. Despite my competitive soul telling me to keep going, I know that if I don't rest, I will eventually be hospitalized from passing out. Whether it be laying in bed with a good book or Netflix binge, or several naps paced throughout the day, rest is key in recovering. (I also just suggest naps 100%- they are the only thing that gets me through the day, even when I am feeling "normal").
  3. Limit Yourself. While I will want to say yes to going out with friends the night after I spent all day wake surfing, I remind myself to politely decline. As much as I would love to hang out with them, and I feel down that I am missing out, I have to prioritize my well-being.
  4. Lastly, Treat Yourself. When you miss out on things due to your illness, you might find yourself down and lonely (or at least I do). In these times, I treat myself in a variety of ways, whether it be to a nice, cold cup of vegan-friendly ice cream, or to a phone call with my family. Whatever makes you feel better when you are feeling down, treat yourself.

(Photo Credit: Celia Mascio)

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