When Being Chronically Ill Finally Hits You
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Health and Wellness

When Being Chronically Ill Finally Hits You

I crawl towards an uncertain future with a disease, armed only with hope and a salt shaker.

When Being Chronically Ill Finally Hits You
Author's Photo

Tonight I came home from a wedding I have been eagerly awaiting for eight or so months now. A friend of mine tied the knot and had the best day of her life, while I simultaneously realized what being sick truly means.

When you’re heading out to an event such as a wedding, there are several things you must prepare for:

  • You need to be tactical. Dress for weather but also make sure you look stellar underneath your raincoat and umbrella.
  • You are going to see a ton of people, and you WILL need to greet them by hugging/kissing/shaking hands with them. So much germ sharing
  • You need to ensure your dance moves are up to date
  • You need to get a babysitter for the kids – thankfully I only have two cats so I made sure my mom would feed them and coddle them just enough so that they would feel loved while I was gone
  • You will be out of the house for at least 12 hours – think food, water, charger (survival essentials)

However, what packing for me meant all of that, but much more.

My clutch had to be carefully arranged so that I could fit my ID, some money, bobby pins to make sure I looked stellar throughout the event, and my phone to take incredible selfies.

Then came the medical essentials. I had to pack an inhaler so that if my lungs decided to start to ruin the evening, I would be able to somehow control them (spoiler alert: this didn’t work); I packed a plethora of pills that I would need during the 12+ hours I would be out of the house; I packed my rescue nitro-glycerine bottle in case one of my other disorders tried to make me crumple into the fetal position mid first dance; I packed my glucose meter and insulin pen; I packed emergency sugar packets in case my blood sugar went low; and finally I packed tissues – not because I feared I would cry at the ceremony, but because coughing and tissues go hand in hand like salt and pepper or Donald Trump and lunacy.

This all happened before I even stepped out the door to head to the wedding. Once I got there I had to deal with the fact that my energy for the day had already been depleted to no near zero levels from preparing for the event itself (the irony that is chronic illness.) That meant trying to juggle enjoying myself and sustaining myself. I didn’t want to appear tired or sick because this was a night for celebration and no one wants to be the damper in the couple’s day.

So let's fast-forward through the courses of the meal (with added salt) and the delightful speeches, all of which I got to spend sitting down – a god-send. By this time it was past 10:30 p.m. and I am honestly usually in bed by that time. The dance floor started to move and shake so I got up there, I wanted to have fun and share in the love and joy of the day!

The only problem was that my lungs work at less than half the capacity of every single other healthy person. I struggled to keep up with my friends and entourage as we shook our bodies to the beats of the songs. I am not describing dancing that requires serious choreography or marathon runner level cardio, simply dancing (there were some people on the dance floor who had at least 40 years on me and who were able to keep up.) I was attempting to dance for five minutes, coughing nearly the whole time, when I decided I needed to sit down and rest.

My first thought was that any photos would no doubt capture me mid cough on the dance floor, ruining precious moments and Facebook profile photos. My second thought was pure gut-wrenching terror. Was this how the rest of my life was going to feel? Not being healthy enough to dance for five minutes amongst friends? After catching my breath and using my handy inhaler I decided to be brave and head back out to the dance floor because YOLO. I only made it another five minutes, coughing non-stop before I gave up again.

I was never able to catch my breath enough at the wedding to truly enjoy myself. I did not want that to affect any single other person in attendance’s evening, so I decided that leaving very early in the evening would appease my lungs, my overthinking conscious, and the other guests. What I didn’t know when I left was how deeply this day would shake me to my core, how I would never look at myself as capable of living like my healthy friends did – ever again.

I lost some hope on that day, after months and months of living in a cycle of getting sick, recovering, then getting sick again. And it’s not that I don’t try my hardest to combat the very nature of my disease, the progressive, fatal, makeup of what I face; rather, it is that I fight my hardest and persistently lose. When I wake up with a fever, or I have to sit down after climbing one flight of stairs, or I cough throughout an entire movie at the theater – I am losing.

The wedding day was a life-changing day for my friend, and for myself. She has a new beginning to her life, and I mine. She steps forward with all her hopes and dreams beckoning her forward, and I crawl towards an uncertain future with a disease, armed only with hope and a salt shaker.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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