What Living with MS is like for Me

This post is Part Five of My MS Story

Have you read about how I coped with my MS diagnosis?

No two people living with MS have the same disease experience. The uncertainty and inconsistency between patients are two of the many challenges of this disease.

My MS is not your momma’s MS.

But we might have a lot in common.

I lead with this caveat because it’s essential to understand that everything I’ve shared so far, and everything I’ll share moving forward, is my MS story. It’s unique to me and the symptoms, emotions, and experiences that I have while living with this disease every day.

The Physical Burden

You can’t see that I live with MS or any health condition. My symptoms are invisible, or I learned masking techniques from all the years I kept my disease a secret.

But this disease is my constant companion.

Managing my MS symptoms is a full-time job. When we’re young and healthy, we often take our body’s resilience for granted. My body refuses to let me off the hook. I have to sleep right, eat right, move right, stretch right, plan right, think right. Or guaranteed I won’t feel right.

My lesions have gifted me several symptoms to manage daily. The most significant symptom I have is spasticity in both my legs, which is most impactful in cold weather and as the day progresses. My routine includes stretching twice daily, walking, wearing loose-fitting pants, and using a heating pad on my thighs in the evening. When those wellness strategies don’t relieve my pain, I resort to taking a medication called Baclofen and going to bed right after dinner.

I thought I knew fatigue before I met MS. Oh, how I was wrong. That was just being tired. Fatigue is a whole-body sensation where your wading through water at a cellular level, and your fully submerged brain drowns. Consistent sleep, drinking plenty of water, stress management, afternoon naps, and staying out of the heat helps to manage my fatigue. But some days, I just live treading water in my invisible pool while the world speeds around me.

Each lesion brought its own set of symptoms. I’m fortunate that my Tysabri infusions has prevented new lesions from forming, but it doesn’t fix my the destroyed myelin. Those scars are permanent.

Tingling numb legs. Forgetting what my husband and I just talked about. Unintentionally throwing objects at the ground. Tight corset sensations around my ribs. Being the world’s largest fart factory, also known as weird GI issues.

The list of symptoms I manage continues.

The Emotional Burden

My grieving process was long and messy. It holds awards for the worst and most embarrassing, cringe-worthy times of my life. I accepted the truth of my disease years ago, but it regularly tests my grit, resilience, patience, and ability to find daily joy despite the physical hardships.

Find me the one person living with MS who never gets emotional about how MS impacts their daily life so I can give them the world’s most UN-human being award.

I have fewer emotionally challenging days as the years since my diagnosis pass. But I still have these days every month, and as I age and my disease progresses, I expect more.

Living with an incurable chronic disease is bullshit. You don’t get a break. You don’t get “better.” It’s just there every day, ready to test your coping skills.

Allowing yourself to be emotional is crucial to include in your MS survival kit. Cry when you need to cry. Get mad when you need to get mad. Be anxious when you need to be anxious. It doesn’t mean you aren’t strong or that MS is winning. It means you are human, and you accept that this disease sucks.

Just find ways to bring yourself back to contentment and seek joy. That’s what I do.

MS doesn’t consume my life. It’s just there.

The Internet and anxiety demons relentlessly tried to convince me that MS would steal my happiness, identity, and self-worth. At times, it has, but overall I still live a “normal” life.

I continue to make incredible memories with my husband. I’m capable of monumental achievements and moving my body to accomplish the tasks I choose.

I work. I play.

I live life exactly how I want to live, and MS comes along for the ride. As my life’s passenger, MS has particular needs that I must attend to and can be a real pain in my ass, but it’s only that: a passenger. Over the years, I’ve learned to manage my disease’s physical and emotional burdens and practice giving myself grace when the burden is too heavy that day.

MS makes my life a harder and tries me at times, but I live an adventurous, joyful and fulfilling life with MS.

Part six of my story will be released soon. Please follow my blog to receive a notification when it’s posted or keep checking back

Part six of my MS story is coming soon.

© 2020-2021 Alexys Carlton. All Rights Reserved.

Published by Alexys

Hi, I’m Alexys. I love to write. I enjoy the process of finding the best words to express my points, emotions, and imagination. Alexys Writes is my personal blog, a place where I write about whatever I want and share it with you, my dear reader.

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