My Lifestyle as Someone With Multiple Myeloma

On social media, my profile is filled with images of me smiling and looking happy, visiting different places, or doing fun activities. My friends and acquaintances often praise my active lifestyle and apparent good health. However, behind the facade lies a constant battle with a dull throb that plagues me daily. Weekly chores, like grocery shopping or physical therapy, accompany a nagging ache in my body. This persistent pain stems from the six inches of collapsed vertebrae and a severe case of shingles that I contracted more than three years ago. However, its lingering effects still haunt me daily. Despite this, I am grateful that this discomfort does not affect my sleep. For a few hours each night, I can find relief from the constant burden on my tired body. The only solace I find is in my naps; on the shingle-infected side of my body, the pain almost wholly dissipates while I rest.

Despite the constant soreness in my chest and back, I refuse to vocalize my injury or seek sympathy from others. I long to maintain an appearance of strength and self-reliance. I create a good front, but it doesn't accurately portray the struggles I face every day with chronic agony. It feels like a taut elastic band is wound tightly around my midsection, desperately trying to stabilize the leaning Tower of Pisa.

In the June 2024 issue of the AARP magazine, the headline in bold white letters caught my attention: "The War on Chronic Pain." Curiosity piqued; I delved into the stories of others battling frustrating ailments. I decided to stop takingGralise (gabapentin), the prescribed medication for my nerve pain. My daily dose to alleviate nerve pain from shingles had become more of a burden than a help. The persistent drowsiness and lethargy took their toll on my body and mind. Now, as I gradually weaned off the medication, I felt a newfound clarity and lightness. A wave of conflicting emotions washed over me — relief at no longer relying on medication, guilt for not following doctor's orders, and a sense of freedom from the constant need for pill-popping.

I like watching cooking shows, so the idea of competing in a “Top Chef” Quickfire challenge is overwhelming. As I cut carrots and fragrant fresh parsley for the potato salad, I take time to take step-by-step pictures for my Chef Cheen blog. My Virgo tendencies kick in, and I can't help but clean up spills and wipe down counters. Afterward, I begin another dish of baking a mouth-watering apple crisp tart and continuously wash dishes between tasks. My reacher is in the corner, waiting for the stray piece of apple begging to be picked off the floor. After several hours, my body is exhausted and craving for rest. Maybe I should just move to Italy, where I can easily embrace the Mediterranean tradition of “riposo” which is taking a leisurely afternoon or early evening nap to recharge. Then I won’t feel guilty when we finally sit down for dinner served around 10 p.m. It brings back fun memories of the same schedule of moonlit dinners while visiting friends in Sicily. It’s a constant reminder that simple tasks are no longer accessible for me due to the physical toll it takes on my body.

My limitations always hinder my daily routine. Even mundane tasks like laundry and paperwork require a great deal of effort. Before social events, I plan an hour's rest or a nap to last through the evening. Traveling in our car is also a challenge, as I need extra pillows to support my disfigured spine. As I type on my laptop, I sit in an armchair, providing much-needed back and shoulder support. Surrounding myself with strategically placed cushions helps alleviate some of the ongoing discomfort in my body. Despite these challenges, I am determined to focus on my work and continue writing this blog.

Since April 2020, every day at 11:30 a.m., I have gathered a group named the Bells of Hope. The chiming of my Tibetan bells echoes through the internet and out into the world, a reminder that we are still here and staying strong for each other with hope. As I lead this daily gathering, I am filled with a sense of purpose and motivation to keep moving forward. This community of individuals, brought together by our shared values, gives me a sense of connection and support. Each day, I share my thoughts and inspirations with them, creating an atmosphere of positivity and growth. The sound of laughter and conversation fills the room as we unite to uplift each other. Our little group has become a beacon of hope in these uncertain times.

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