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When Life With Chronic Illness Feels Like Endless Days at Sea

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Growing up, cruises were our go-to vacation. I’d pack one set of bags, leave them in my room to travel from destination to destination throughout the week, without having to move hotel rooms. I was able to see many of the beautiful islands throughout the Caribbean and enjoyed some of the most amazing sunsets into the vast ocean.

4 women on the deck of a ship

My favorite days were the ones at sea when the ship was traveling to the next island. I’d spend my days by the pool, swimming and enjoying unlimited virgin pina coladas at the swim up bar. I’d spend my time with the children’s camp, making new friends, participating in scavenger hunts and cooking classes, making wonderful memories. And at night, in the darkness of the inside cabin, that cruise ship would rock me to sleep.

A group of young people in bathing suits and lifejackets on a rocky beach

They were bliss-filled weeks filled with memories I fondly look back upon.

Now, four and half years in to endless days at sea, what I wouldn’t do for one more stop. A day on an island filled with excursions.

Four and a half years ago, I took a two and a half hour plane ride and have not left the boat since. After many tests ruling everything else out, I was diagnosed with Mal de Debarquement Syndrome (MdDS) — an illness that leaves you feeling as if you’re in constant motion.

My symptoms feel as if I am constantly out to sea. I experience the nausea, anxiety, falls, feeling off balance, chronic pain, chronic fatigue and migraines associated with this constant motion.

So here’s a short glimpse into a typical day in the life of this “rocker” (as we like to call ourselves):

6:45 a.m. — My eyes shoot open to the sound of my alarm. I hit snooze as my brain is not ready to wake up yet. Yep, the boat is still rocking. I try to find my footing and waddle into the bathroom. I take a mixture of pills to help calm my brain, the nausea and the anxiety. I sit in the shower or lean against the wall while the rocking intensifies as the water hits my back.

7:15 a.m. — My young children have made themselves and me breakfast. Something small to calm my churning stomach and of course my double espresso (the true reason I’m able to make it through the day), and we laugh and talk about our day ahead. The boat is still rocking.

8 a.m. — I sing my three children their good morning song and send them off to walk alone to school as my body does not have the energy to walk with them this morning. The boat is still rocking.

8:15 a.m. — I have my extension cords lined up to plug in my hair dryer and straightener. I put in my contacts if I’m having a lower symptom day, otherwise I apply my makeup and throw on glasses. I listened to a podcast to update me on the latest news of the day, so I’m prepared to discuss with my students. The boat is still rocking.

9 a.m. — I drive to class at my local university. I have every folder labeled and organized alphabetically. I have three pages of lesson plans printed so I can provide as specific examples for my students as possible. I turn off the lights to the classroom as the fluorescent lights can set off a migraine and open the blinds to let the natural light in. I give Annie’s folder to Abby and vice versa. I swear under my breath, but promise to get them correct before midterms. During our discussions, I can’t recall the name of the person about whom I’m speaking. My students help me fill in the blanks. I apologize on my high symptom days, but my students give me grace. The boat is still rocking.

11:30 a.m. — I waddle back to my car and collapse into it. My body and brain are exhausted. The boat is still rocking.

Noon — I have a quick bite to eat with an anti-nausea pill and then crawl onto the couch to rest until it’s time to pick up the kids from school. The boat rocks
my body off to rest.

2:50 p.m. — My eyes fly open again to the sound of my alarm alerting me it’s time to get the kids. My body and brain do not have the energy to pick them up today, so I text their principal or a friend and ask them to send my kids to walk home alone. I can’t take another anti-nausea pill to calm my stomach as it’s too soon. The boat is still rocking.

5 p.m. — Dinner is a sheet pan dinner as I can throw some chicken and veggies into the oven and voilà, dinner is ready. I take an anti-nausea pill in hopes that my stomach can handle the food. My kids, husband and I swap stories about the day. The boat is still rocking.

7 p.m. — Our family has played a game, gone for a walk, read a book or watched a show. My 10-year-old son sits on my feet while we play to help me feel more grounded. It’s now time to get ready for bed, and I join my children in the routine. I take another round of pills to calm my brain for bed. The boat is still rocking.

8 p.m. — We tuck the kids into bed, saying their prayers. I follow shortly behind and my husband tucks me in. The gently boat rocks me to sleep as my stomach rolls with each new wave. I dream of the cruise ships I once departed. I dream of the white sandy beaches and the ocean wrapping around my toes as I slowly step into the water. I dream of the virgin pina colada with the umbrella.

6:50 a.m. — My eyes shoot open to the sound of my alarm again. I hit snooze as my brain is not ready to wake up yet.  The boat is still rocking, but I’m in Iowa. Rain hits the outside windows, and I realize it’s one more day on the boat ride that never ends. I put one foot on the floor, then the other, and go through all the motions for another day. And the boat is still rocking.

Images courtesy of the contributor

Originally published: April 17, 2020
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