Grounded
By, Caitlyn Conroy-Ursillo
For those of you that know me personally, this title might seem deceiving, as I have been a rule follower my entire life. The fear of failing was enough to scare me into almost always doing the right thing – I rarely needed the threat of losing privileges to get me on the right track. From crying after “dropping my star” in first grade (Sorry Mrs. W! I thought you told the class we could pack up!) to sobbing after receiving a failing essay grade in 11th-grade History, disappointment always sunk in when I wasn’t able to maintain my perfectionist tendencies. It’s safe to say I’ve been afraid of being grounded for the past 26 years – but starting in 2020, parts of my life were taken from me that I still have not been able to get back.
It was a dreary, cloudy Friday. Valentine’s Day to be exact. Dealing with minor cold-like symptoms, I went about my professional development day at work, taking part in training with my fellow teacher colleagues. We all enjoyed a nice breakfast in the library, and I made sure to drink some orange juice, as I wanted to boost my Vitamin C in any way that I could. Slightly before our lunch break, I started feeling dizzy, but figured it was just my body exhausted from a long week of teaching nine- and ten-year-olds. My co-worker and friend of mine went to a quick lunch, and returned for an afternoon full of meetings.
Walking back to the library, my dizziness returned, but again, I decided to shake it off, even though this was an unusual feeling for me. I sat down to hear an administrator speak, and within seconds, my heart was pounding out of my chest. 120. 140. 167 beats per minute (BPM). I couldn’t focus on a single word that was being presented. As my heart rate increased, my vision went fuzzy. Black tunnels began to cloud my peripherals, and I knew that something was very wrong. Not wanting to make a scene, I quietly texted my principal, “I’m not feeling well, I need to see the nurse.” Within 60 seconds, him and I were rushing to the office, where I elevated my feet, he called 911, and fear started to set in. Am I going to pass out? Am I having a heart attack? I’m only 23 – this can’t be something that serious.
On the way to the hospital, paramedics questioned,
“Has anything stressful happened to you lately?”
“Are you feeling overwhelmed?”
“This is most likely a panic attack.”
While a traumatic event had occurred within our school community a week prior, I couldn’t see the connection between that event and these symptoms. No stress was felt that day at work. I was happy to spend time with staff in trainings. It was Valentine’s Day, and my (now husband) and I were going on a special date that evening. How could this be a panic attack? Despite knowing my own body, others around me tried to convince me that these symptoms were related to anxiety.
ER visit- February 14, 2020
After a few hours in the ER, and a diagnosis of “the beginning of a virus which can increase your heart rate”, I was sent home to rest. The following days were increasingly worse: more dizziness, no appetite, no energy, elevated heart rate. I couldn’t make it through full days at work, and even when I squeaked through an 8-hour work day, my evenings consisted of naps, light dinner, and an early bedtime.
Over 3 months’ time, one cardiologist appointment, 3 to 4 primary care visits, multiple rounds of lab work, an echocardiogram, a chest X-ray, and a beta blocker later, I was diagnosed with mononucleosis. That explained the fatigue, lack of appetite, and weight loss. But beyond this bout with mono, I continued to have lingering symptoms; symptoms that couldn’t be explained by a gamut of doctors.
Still recovering from mono?
Anxiety?
Deconditioning?
Lyme?
These were the “answers” I was being given, but I grappled with them for months and months to come.
Two and a half years after my initial mono infection, I was at my bachelorette weekend with my best friends at the beach. We all were looking forward to a low-key getaway, full of games, good food, and good company. The first morning of the trip, we enjoyed beautiful views while fueling up on breakfast before getting in the car to go exploring. Within minutes of being in the car, the same symptoms that landed me in the ER in 2020 came rushing in: nausea, spiked heart rate, sweating, tunnel vision. I sat silent trying to fight it off, but my friend that was driving looked over at me in the passenger’s seat, and immediately knew something was wrong. I thought I’d have to ask her to pull over so that I could throw up or lie down on the side of the road to pass out safely. With my feet now up on the dash, a cold water bottle behind my neck, and my amazing friends getting us to a drugstore to grab a Gatorade, I was able to make it back to the beach house, awake and alert. However, my energy tanked, my appetite was gone, and my dream weekend with my girlfriends came crashing down in front of me.
By the end of April 2022, with the wise guidance of a fellow Dysautonomia warrior and best friend, I researched more information regarding one of her diagnoses: Postural Orthostatic Tachycardia Syndrome (POTS). I had known some details of this chronic illness through the awareness raised by my friend, but never truly understood all of the potential symptoms of POTS. Through my findings, I decided to conduct a “Poor Man’s Tilt Table Test” at my house. This unofficial test had me lie flat on the floor for 5 minutes with no additional movements, tracking my heart rate on my smartwatch. After 5 minutes, I needed to stand up and still for an additional 5 to 10 minutes, tracking my heart rate once again. The criteria for an official Tilt Table Test (TTT) and POTS diagnosis is an increase in heart rate, changing positions like I did, of 30 BPM or more. With an increase of 55 BPM, going from 81 BPM to a sustained 136 BPM, I knew it was time to seek professional medical advice. After seeing similar results with standing tests at two different cardiologists’ offices, alongside explaining my other symptoms, I received an official diagnosis of POTS, and have been trialing various pharmaceutical and non-pharmaceutical treatments ever since.
I spend many of my days fighting with my own body, slugging electrolyte drinks, tablets, and medications to lessen the dizziness, increased heart rate, and slew of other symptoms. Weekends are my recovery days, quieting headaches, joint pain, and fatigue that can interfere greatly with my ability to be a young, social, and active 26-year-old woman. During the week, I stand on my feet for hours as a teacher, but the early mornings, lunch hours, and later afternoons are spent grounded. On the floor. Feet elevated. Looking up at the world from below, trying to maintain normalcy, while battling near-constant symptoms.
The biggest struggle, aside from the physical, is the mental toll that POTS has taken on me. Even though I am very much alive, I often grieve the loss of who I used to be: Softball player. Cheerleader. Group fitness instructor. Bootcamp instructor. 5K runner. A person who could walk up the stairs at work or home without feeling out of breath and faint. A teacher that could play tug-of-war with her class at Field Day and not end up in the nurse’s office. A sister that could compete with her brother, shooting basketball hoops on the boardwalk for 45 seconds, without needing immediate salt, Gatorade, and a bench to sit on.
After field-day tug-of-war
Me running the Race to Beat POTS 5k … before I developed POTS
For anyone going through chronic illness, I will say that something that keeps me emotionally grounded is my support system. I have amazing family members, friends, and co-workers that know my story, and are always willing to help in whatever way they can. And for all of those people, I am eternally grateful. The check-in texts, conversations at work, the distractions and laughs. All of these are noticed and appreciated, and I couldn’t do any of this without my support system. Thank you to everyone that has been a listening ear, a shoulder to cry on, or a hand to hold!
While this may be what life looks like right now, and I wish I could turn the clocks back to who I was before POTS, I will not give up hope. I will continue to fight for a cure, to share my story, and to support those within the chronic illness community. Thank you to Dysunderstood, and to Ella Eastin, for creating this platform to spread awareness and strength.
Items to Keep You Grounded During a Symptom Flare:
Electrolyte drinks
Salty snacks
Prescribed medications
Compression garments
Headache hat (or ice packs)
Ice roller
Clean sheets
Fuzzy blankets
Soft pillows
Comfy clothes
Snuggles with pets
Texting friends and family
Facetime calls
Arts and crafts
Online shopping
Netflix, Hulu, or a streaming service to watch your favorite shows
Open windows
Fresh-air walks
Asking for help when you need it!
Thank you to our primary sponsor, Vitassium by Salt Stick.
Audio Accessibility Feature brought to you by Nurse Mates®.