How I Find Certainty While Living With an Unpredictable Illness

Jessie Ace avatar

by Jessie Ace |

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31 Days of MS, MS episode, certainty, gratitude, unique, symptoms, the circle, affirmations, fatigue, depression, progress, presentable, disclose, dog, temperature, end of the year, uncertainty, online community, conflict, bloated, enabled, caffeine

I glanced at the clock: 15:51. I was relieved.

For some reason, I’ve been obsessed with time lately. I’m not sure if it’s due to lockdown anxiety or the ups and downs of my multiple sclerosis, but time has become a constant source of comfort for me. Weird, isn’t it?

When we feel out of control with various parts of our lives, we search for a constant. Time goes by every day without fail.

I blame my husband for causing this obsession. After reading “Atomic Habits,” a book by habits expert James Clear, he added a digital clock in every room of our house, in an effort to increase his productivity. 

Because who doesn’t want to know that they shower for exactly four minutes? 

I support whatever he does. The problem with having digital clocks everywhere is that it’s caused me to develop a weird obsession with time.

It all started right after I began experiencing tingling whenever I looked down. A few days later, I noticed my hands felt a little strange. It was mild at first, then became more intense.

“Here we go again,” I thought. My mind quickly went into a downward spiral. What if this happens? What if that happens? It was like the end of my world as I knew it. 

I’m fortunate that I haven’t relapsed since being diagnosed eight years ago. 

Over the last eight years, I almost forgot what it’s like to have something unplanned happen to your body. At first, I freaked out. Finally, I accepted that it’s how life is with MS. I don’t think I’ll ever be used to this feeling of uncertainty

A day later, my hands felt burnt, as if someone had held a flame to them while I slept. On the surface, they look normal. Nobody seems to understand what I mean. 

A day after that, my left leg decided to do the same thing. People without an illness don’t know how lucky they are not to experience this. 

As silly as it sounds, the only thing that settled me and prevented a full-on panic attack was going to the bathroom at precisely 12:34, 10:02, 22:55, or 8:08 (which I call “BOB time” because the numbers look like they spell out “B:OB” on a digital clock). The symmetry on the clock fills me with relief. 

It’s official. I think my string of MS “blips” has made me lose it. 

Finding something constant is so essential when we have such an unpredictable disease. It gives us comfort in times of distress. 

I’ve spoken before about the roles that uncertainty and certainty play in our lives. Having an equal share of both is vital for our happiness. 

We get plenty of uncertainty from our bodies and the world around us. We need to balance it out with something certain. I think that’s why time works so well for me. 

Do you have something that brings you certainty amid the chaos, however strange it may sound? Please share in the comments below.

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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, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Lesa W avatar

Lesa W

So as I begin this journey being newly diagnosed, so many questions, fears, unknowns run through my mind. I have found comfort as a woman of faith that has brought me calm and peace in my uncertainty. So one thing is certain for me and that is my relationship with Jesus! He is my constant among this chaos, with the unknown of having this thing called MS and my constant strength as I live each day with this new disease that has come into my life. Jesus is my certainty in the uncertain!

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Jessie Ace avatar

Jessie Ace

You can get through this Lesa, you're strong. It'll give you some challenges along the way you may not be prepared for. You can do this I know you can. This community is super helpful if you have questions, check out the forums in the MS News Today website. #StayENabled - Jess

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