Conquering the Energy Vampire Battling Myasthenia Gravis Fatigue

Managing Myasthenia Gravis Fatigue Coping and Treatment Strategies

Breaking the Fatigue Cycle: How I Manage Myasthenia Gravis

By Kelly Aiken, as told to Kara Mayer Robinson

In 2012, I discovered I was the not-so-lucky owner of myasthenia gravis, a condition that causes muscle weakness and fatigue. Fast forward 10 years, and fatigue is still my unwelcome companion. But fear not, my friends, for I have uncovered some clever ways to manage it.

The Morning Glory and the Evening Plunge

Picture this: I start my day feeling like a champ. My energy levels are soaring like a freshly launched rocket. But as the day progresses, the fatigue monster claws its way out from under my bed. By late afternoon, I’m running on fumes.

Come 6 p.m., you’ll find me cozied up in my bed, enjoying a solid 14-hour horizontal rest session. Yes, you heard that right, 14 hours. If I don’t clock in the required amount of beauty sleep, fatigue swoops in like a vengeful superhero, ready to take me down.

Sleep, my dear friends, is a fickle beast for me. I struggle to fall and stay asleep, and, boy, does it amplify my fatigue. No sleep means no energy, and no energy means no superhero powers for me.

But wait, there’s more! The fatigue saga includes its own set of villains: heat, stress, illness, bug bites, and even certain foods like sweets and greasy delights. It’s as if they all gathered for a secret meeting, plotting to drain me of every ounce of energy, just for kicks.

And here’s the kicker: sometimes the fatigue strikes out of the blue, like a ninja in the night. I could be feeling on top of the world, and then, bam, the world comes crashing down on my tired shoulders.

The Fabulous Roller-Coaster Ride of Treatment

My treatment is like a wild roller-coaster ride, with my fatigue as the unruly passenger.

Once a month, I get strapped in for a 5-day series of intravenous immunoglobulin (IVIg). Oh, if only there were a prize for impersonating a rag doll! During those days, my body goes on strike, moving at the pace of a sleepy snail. Even my brain joins the sedentary party, taking its sweet time to process anything.

Before my IVIg days, I underwent plasmapheresis, a plasma exchange extravaganza, every single week. I have to say, my brain threw a tantrum during those times. It slowed down to a crawl, making basic thinking feel like solving the mysteries of the universe. After five grueling years, I decided to switch gears and give IVIg a try. Thank the stars, it made a world of difference! Suddenly, my body found its rhythm, and my personality made a triumphant return. The weakness and fatigue were no match for this superhero duo!

Unleashing Strategies to Tame Fatigue

In my battle against fatigue, I’ve mastered a few tricks up my sleeve that would make even the craftiest magician proud.

First, let’s talk gadgets. I’ve acquired a jar-opening contraption that’s like a knight in shining armor, slaying tight lids with ease. And let’s not forget the trusty automatic can opener that ensures I won’t be defeated by a stubborn tin. Oh, and my favorite hack: attaching a belt to my laundry basket, transforming it into a loyal sidekick that obediently follows me around. Laundry duties? Check!

But there’s more to it than just gadgets. I’ve discovered that when a task feels like climbing Mount Everest, there’s usually an alternative, less strenuous route to conquer it. It’s all about using a little creativity and finding the path of least resistance.

And when a task truly exceeds my superpowers, I have a squad of heroes on speed dial. Yes, ASKING for help is something I despise, but I’m eternally grateful for those who come to my rescue. Plus, my local MG support group deserves a shout-out for their wisdom and camaraderie.

Now, here’s a little secret I’ve uncovered: Tylenol, my friend, can have a knack for taming fatigue’s viciousness. It seems to stall the pain’s intrusion and, in turn, delays the fatigue’s grand entrance. So, if I have jam-packed days ahead, I pop some Tylenol first thing in the morning, kickstarting a marathon against fatigue.

But let’s not forget the importance of mind and body harmony. Some folks find solace in meditation or yoga, while others embrace the open road for a walk when their body permits. As for me, my happy place is in the water. Swimming laps feels like pure bliss. It’s like the water casts a magical spell, supporting my weary muscles and extending my spine to newfound heights. It’s the closest thing to heaven I’ve found on Earth.

Embracing the Rhythms of Rest

Here’s a simple life lesson I’ve learned the hard way: resting when your body screams for it is the secret to keeping the energy thieves at bay. Ignore that plea, and prepare for the haunting consequences.

Once upon a time, I pushed myself to the brink of exhaustion before admitting defeat. But let me tell you, fatigue is an undefeated champion. There’s only so much rebellion you can muster before your body waves the white flag.

These days, I’ve become a master at listening to my body’s cues. I’m like a dance partner in perfect sync, spinning gracefully with fatigue’s rhythm. Of course, I still stumble from time to time and must relearn my limits. But hey, no one said superheroes were immune to the occasional misstep!

Finding Silver Linings in the Land of Fatigue

Ah, the hardest lesson of all—the art of letting go. Myasthenia gravis dealt me a tough hand, forcing me to give up the career I adored. No more shaping young minds, no more uplifting those in need. It was a bitter pill to swallow.

But as time passed, acceptance wrapped its comforting arms around me. I’ve come to appreciate the less extreme versions of bad days that now tango into my life. And I hold on to the truth that everything is temporary. Feeling good and feeling bad—they’re both fleeting visitors on this roller-coaster ride we call life.

So, my fellow fatigue warriors, let’s grip that grab bar tightly and hang on for dear life. We may stumble, we may get lost in the twists and turns, but remember, the ride is worth it. The fatigue can be managed, and brighter days await us all.

Stay strong, embrace rest, and keep conquering fatigue, my friends!

What are your strategies for managing fatigue? Share your superhero hacks in the comments below!