Navigating Ups and Downs with MS

Navigating Ups and Downs with MS

Jennifer Silver Linings

Today, I ate a dog treat. I was eating cookies from a nearby bowl when I broke a dog treat in half for Abby. Instead of putting the other half in my pocket, I put it in my mouth and chewed. Wondering how the brand could screw up so badly, I finally realized what I had done, and spit out the rest.

I am operating on fumes because of an exacerbation. It takes a great deal for me to admit things are difficult, but I am waving my white flag. I exist in an existential state — I’m here physically, but completely disconnected. My mind is in a cognitive quicksand, and my body in perpetual slow motion.

As my disease progresses, it’s harder to find a finite trigger for any flare. Things that were once tolerable can now aggravate my disease, and I often feel I am walking blindfolded through a minefield of explosive triggers. Inevitably, I stumble, and one blows, and as I struggle to walk straight, I set off three more.

That pretty much sums up my week.

I find myself growing weary, and that weariness spills over into every aspect of my life. From relationships and activities to appointments and obligations, everything is fair game. Even as I sit and type, my mind travels, and it takes everything I have to bring it back to the present tense. (By the way, I wrote that last sentence almost two hours ago.)

Upon diagnosis with SPMS, I never gave too much thought to the pervasive nature of this disease. Now that it permeates every crevasse of my being, I admit there are times I am fearful. I am fearful of a future with a progressive, incurable disease. I am fearful of further decline. I am fearful of being a burden to my loved ones.

Nevertheless, my worst fear is relinquishing today for a fear unrealized. I cannot think of anything worse than forfeiting my many blessings for anything — let alone something that may or may not happen. While I have fewer good days, those that are good are in Technicolor. My world has grown brighter alongside progression and that is God’s handiwork. The hours I have spent lying on the lawn, surrounded by my beloved golden retrievers, watching the palm trees sway have been some of my happiest and most fulfilling. As much pain and difficulty I endure because of progressive MS, so too, are the innumerable gifts I cherish most.

On the days that bring me to my knees and sometimes keep me there, I remind myself that I can do this. On the days I stumble and fall, I get up and remind myself that I can do this. On the days when the pain falls hard, I remind myself that I can do this.

Moreover, on the days I eat dog treats, I remind myself that this too shall pass — I can do this.

***

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6 comments

  1. Sherry Haywood says:

    I feel overwhelmed with the inabilities to do the things I used to do everyday, EVERYDAY.
    I struggle to explain this to other people around me as they just see me as having an “off-day” more often than not…
    I wonder to myself… “How much longer am I going to have to deal with this? Will this ever end? Is it going to be like this for the rest of my life???”
    ****I really hope they find a cure but it doesn’t look as though anything is going in that direction anytime soon…(at least in my lifetime…)****

  2. R says:

    As a fellow dog lover, I admire your humor under duress. May your pooches bring you comfort on both the lousy and wonderful days.

  3. Debi Wilson says:

    I can totally relate to what you are going through Jennifer. Great article and I love your positive attitude! I agree, those of us with MS are strong and we can do this!:)

  4. Alan says:

    I absolutely understand where your coming from. I’m also dealing with severe depression, mood swings and anxiety attacks and my Neurologist wants nothing to do with that part of my disease. So I go into my appointment and totally forget to tell him how bad the neuropathy is. Or that while his little flashlight didn’t show any Optic Neuritis my Eye Docs machines has it all mapped out. I am always asked if I had had any flares or relapses. After 5 yrs I’m still not sure what one is. And I always feel stupid or as much f I’m being a drama queen if I ask. The hundreds of symptoms we suffer through are they just what we just have to “deal” with or are some real relapses?

  5. Donna says:

    Has anyone given the ‘Coimbra Vitamin D Protocol’ a try? I’ve been reading a great deal about it and I think it’s worth a try. It has shown 95% successful results with MS patients throughout the world.

  6. Jennifer Sand Bodurtha says:

    Hi all! I have never posted my MS history before, but my experience may be helpful. I was diagnosed with RR MS 30 yrs ago. I researched diet and followed Dr. Ira Swank’s Low Saturated Far diet of fewer than 10 grams per day. Very doable and have only broken it a few times. Plus, have been on medication beginning with Copaxone and now Techfidera. Learned yrs ago that I am allergic to beef. Yup, made my right eye blurry 45 mins after. And thought about the blurryness in past. Don’t touch now and never will again. Plus, full of saturated fat. My disability is fatigue and can no longer work. And don’t go anywhere except to my Baptist Church. I think I am very blessed and hope my experience proves helpful to everyone! God bless you all and will keep praying for a cure.

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