SPMS and the Continuum of Acceptance

SPMS and the Continuum of Acceptance

Jennifer Silver Linings
Some days are hard, while others are still harder. Then there are days that bring you to your knees. I am kneeling.

Pain ricochets through my body like a pinball machine on tilt. Flashing lights dance as if to announce the imminent. “Danger, Will Robinson!”

I hit the proverbial wall — hard. And it hurts. Why am I so surprised? I am no stranger to MS-related limitations, yet they frustrate me. I strive for the goal posts, but they elude me. I see them, but as I move, they do, too. I fall short and cry.

One of my best attributes is my heart. I love to love, excel at being kind, and enjoy giving. I am a loyal friend, loving family member, eager volunteer, and grateful individual. I am doing better at establishing boundaries to avoid self-imposed resentment. What I seemed to have omitted is my physical self. It has been a humbling awakening.

Why am I continually confounded by the manifestation of my disease? I watch the distinctions between good and bad days blur. Unlike my days with relapsing-remitting multiple sclerosis, every day with secondary progressive multiple sclerosis (SPMS) is physically challenging. If it weren’t for my attitude, the daily pain and frustration would engulf me. As simplistic as it sounds, I focus on the things I can still control.

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With an unpredictable and progressive disease like MS, it is essential to use tools that help us to cope. Our attitudes are malleable. We can invoke cognitive and behavioral methods to encourage positive thoughts. Like many with MS, I experience emotional instability. Stress, sadness, pain, and anxiety tend to exacerbate this. Additionally, lesions on the areas of the brain responsible for emotional response and self-control heighten irrational responses. I sometimes respond to a stressful situation with simultaneous tears, laughter, and rage.

This morning, I am in pain and missing a beloved rescue event. I run the gamut of emotional indecisiveness — should I stay or should I go? Ultimately, my body decided for me, and here I am. I wonder why, after eight years, I still struggle with acceptance? The grief cycle perpetuates.

Such a powerful sequence.

Because of the progressive nature of MS, coping is a continuum. Without tools to manage the emotional fallout, we cannot help becoming sad or depressed. I practice strengthening my attitude daily. I pray to a benevolent God in whom I trust. I actively seek gratitude and look for opportunities to be of service. I acknowledge those who continue to keep my spirits buoyed. I spend time loving and talking to my golden retriever, Abby. I seek positive quotes to inspire me to adopt new perspectives. I repeat mantras to change my thought processes.

I do whatever it takes, and I encourage you to do the same.

From this moment on I will be kind to my body and my heart. I will no longer chastise myself about another missed commitment. I will acknowledge the validity of grief and love myself through the process. I will remind myself that I am not my MS, my pain, my fatigue or my missed obligations.

I am blessed. I am grateful. I am good.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

8 comments

  1. Chris Torofias says:

    Fortune cookie from the lunch I just got summed it up for me.

    “Don’t be discouraged, because every wrong attempt discarded is another step forward.”

  2. Cecilia M Rich says:

    Thanks for your honesty and the straightforward look at your life as you wake everyday knowing that you must cope with whatever is on your plate! I’ve had MS now for 27 years. I awoke today with the desperate realization that my left leg and right arm are nearly gone! I grimace and allow myself a moment of “Why?!” before I make a mental list of today’s events/chores. Then I pull my rollator close to the bed and swing myself up!

  3. Thanks for sharing your article! This was the perfect day for me to read it. I have been going though some challenging times (haven’t we all?!), and woke today feeling a little helpless and hopeless.
    Then I read this article and remembered all the good things; beautiful, wonderful, emboldening things about ME!
    Through the 30 years I have been diagnosed with MS, and especially during the last 6 or so years, when I progressed to SPMS, I have successfully used my positive attitude and gratitude for what I DO have, with the occasional “blip” like this morning.
    Thanks for pinching me awake again!

  4. Mary Ellen says:

    Thanks for putting my feelings and experiences in writing. It appears I struggle with similar issues. Your missive will serve as a mantra for me. I will refer to it often when I question why I am here. I have been on this journey for 22 years and my nature is to not give up……..THANKS! Again for the encouragement.

  5. Cynthia King says:

    I went against my husband and got a stair lift. He hasn’t spoken to me since last night. He didn’t want it in the way when he does his two loads of laundry. I can’t help that my ms isn’t invisible anymore. It requires walkers, wheelchairs and yes, a stairlift. I’m tired of wearing the same pair of underwear and would like access to the laundry. We have a finished basement that needs updating and I need a project. Even if I just sit at the bottom of the stairs to supervise the work I will feel productive. My husband says I’m wrong in thinking he doesn’t really understand the burden that ms is. He thinks what he does is way more than more than most husbands. Sure, he does. But he does what he does when he feels like it. Well ms has its own timetable, and it comes with a lot of unattractive accessories.

  6. Stephen says:

    I want to pull all sorts of quotes from this essay and post them. “Why am I continually confounded by the manifestation of my disease?” How many times have I felt weak, or extra tired, or weird pains, and thought, “what’s wrong with me?” Only to smack my forehead and reply, “Oh, yeah. I have a progressive incurable unpredictable neurological disease,” and then go forward from there. One step at a time.

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