The Loaded Question: ‘How Are You?’

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Last week was a long, hard week. I pushed through pain, frustrations, difficulties, weariness, weakness, emotional stress, financial strain, the unexpected, and loneliness. If I was to list everything I dealt with the list would actually take pages and pages of writing. This one teeny tiny page with a collection of words is only a small speck into my world living with multiple sclerosis.

That’s why it’s so hard to answer someone when they approach me with the question we all hear…”How are you?”

How am I supposed to answer that question? Do I honestly dump all my insides out on the table allowing myself to be vulnerable, exposing all that I am for someone to pick through? Do I share only a small part of the first thing that comes to my mind in hopes I’m not judged for what I say? Do I choose to not share anything personal at all and simply fake a smile as I reply with the age old response “I’m fine?”

And then the questions I ask myself at that very moment: Do they really want to know? Are they asking just because it’s the polite and social thing to do? Do I have time to spend on explanations and justifications when they look at me puzzled due to a lack of understanding? Do I really feel like having to explain myself for the umpteenth time?

It’s amazing how many thoughts run through my mind in those few short seconds between “Hello” and “How are you?”

Many times I am able to quickly evaluate a person’s motives and concern for my wellbeing and I choose wisely. Other times I miss it by a mile. I have found the best response is always an honest one. Sometimes it requires carefully constructed words like…

My lawyer says I don’t have to answer that question.

OR

Living the dream… but half the time it’s a nightmare.

The most frustrating thing about living with a chronic illness is having to answer someone who asks “How are you?” when there is no easy answer to give. Why don’t they ask “Are you okay?”  I would be able to answer that one. Unlike a broken leg, MS is always there. It’s not temporary, there is no known cure, and it changes from day to day and even moment to moment.

I have found that if someone truly wants to know about me and how I’m doing, they will take the time to stop, focus on the moment and actually listen. We need those kind of people in our life, and we need to be those kind of people to others.

Today, I’m fine to most of the world, but to those who really care and want to listen,

  • I’m tired (or more like exhausted),
  • Stressed about decisions needing to be made,
  • A financial mess,
  • Dealing with a lot of pain,
  • and Feeling sad mixed with a little bit of hope.

How do you usually answer ‘How are you?’ when living with MS (or supporting someone who is)? Share in the comments—I’d love to hear your go-to responses.

 

 

I’m needing help for the annual website costs of Positive Living With MS. Your donation isn’t just money; it’s an investment—an assurance that those who need a word of encouragement. 🙏

With heartfelt gratitude, I thank you from the depths of my heart for your help.

Show your support by going to this link

 

The day my world tilted

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I once was able to do things others could do without any problems. I would hike through the woods just to clear my head when I needed a break from a busy life. I was able to juggle work plans, family life and weekend adventures without a second thought.

Then came the day my world tilted. It started small: a numbness in my face and hands that wouldn’t wake up, double vision that turned reading into a guessing game, and fatigue so heavy it felt like wearing a lead suit. Doctors confirmed what I feared — multiple sclerosis. The diagnosis hit like a storm, washing away the “normal” life I knew.

The early battles were brutal. Relapses came without warning. One day, I couldn’t walk without a cane; the next day, MS stole my strength to hold a coffee cup steady. Mornings became wars against an uncooperative body — legs that refused to cooperate, a brain fog that turned simple math into rocket science, and exhaustion that made even laughter feel impossible.

There were nights when tears soaked the pillow, when the question “Why me?” echoed unanswered. Friends drifted, work accommodations felt like defeat, and the mirror showed a stranger fighting to recognize my own reflection.

But I refused to let MS write the entire story. Small victories showed up. The first big win came quietly: discovering adaptation was one of the first. When life became too exhausting full-time, I pivoted to online writing about life with MS. The keyboard became a weapon of hope. Posting online honestly about the bad days, the ugly fatigue, and the frustrations helped me to come to terms with what was happening. But it always ended with one truth: “I’m still here, still fighting, still finding joy.”

I was giving people permission to rest without guilt or laugh because my story was a bit comical at times. Physical battles turned into creative ones.

When walking was no longer possible, I found adaptive cycling. With a recumbent bike I could quietly ride in the quiet of my home and it kept my muscles moving.

When my hands trembled too much for detailed art work, I switched to digital work using photoshop which helped against the gray days that showed up. Every finished piece of art was a banner: MS may limit me, but it doesn’t erase creativity.

Emotional victories stacked up too. I learned to say “no” without apology, to ask for help without shame, and to celebrate tiny wins like getting dressed without needing a nap afterward. MS taught me humility, patience, and the fierce value of real friends who stayed through the hard seasons. It revealed inner strength I never knew existed, the kind forged in fire and unbreakable.

Today I can stand with the help of technology using a sit to stand machine and it gives me great hope, not because the disease is gone, it’s still here unpredictable as ever, but because I’m proving life with MS isn’t about waiting for the storm to pass; it’s about learning to dance in the rain, even when the steps are uneven.

Most people don’t realize the battles continue. Some days are still heavy, still unfair. But the victories? They’re real, they’re accumulating, and they’re proof that courage isn’t the absence of fear or struggle. It’s showing up to fight another round, finding light in the cracks, and refusing to let MS define the whole story.

If you’re in the thick of your own MS battles right now, know this: every morning you open your eyes and keep going is a victory. Every time you adapt, rest, advocate, connect, or simply smile through tears… you win. You’re not just surviving, you’re rewriting what strength looks like.

You’ve got this. One day, one step, one breath at a time.

 

I’m needing help for the annual website costs of Positive Living With MS. The journey that led me here was anything but ordinary. Diagnosed with Primary Progressive MS in 2013, I often felt like a lone ship adrift in an ocean without landmarks or guides. But then came you—the readers who reached out through messages and comments. Your voices were the lifeline we clung to when waves of fatigue threatened to pull me under. 🚣‍♀️

And so began my quest: to share not just my personal battles with MS but also the victories, however small they might seem in the grand scheme of things. I write about days that start early and end late, filled with the monotony of pills and doctor’s appointments, punctuated by moments of sheer joy as we find laughter within our limitations. 😄

That’s why today, I stand before you—the generous souls who have made these pages their solace from pain—asking a simple favor: to keep the light on. Whether it’s $5 or $50, every bit counts towards keeping our beacon of positivity shining brightly and helping me answer the calls for support that come in at all hours. 💌

Your donation isn’t just money; it’s an investment—an assurance that those who need a word of encouragement won’t be left searching when darkness threatens to creep back into their rooms. And honestly, knowing you are out there rooting for us makes the fight worthwhile each morning I wake up with MS. 🌞

So let’s keep turning these pages together. Let’s continue laughing through tears and finding reasons in our own stories to believe that hope can be a daily visitor even when life gives more than its fair share of challenges. 🙏

With heartfelt gratitude, I thank you from the depths of my soul for considering this plea for help. Your support is not just financial; it’s a promise kept—a commitment to continue being there in moments of joy as much as we have been during heartaches. 💖

P.S: If what I’ve shared resonates with you, won’t you please share this story? Let’s bring more light into the lives of those navigating through dark times—just one click could make all the difference in our community’s journey to positive living! 🙏💛 #KeepTheLightOn

Show your support by going to this link

 

Live one day at a time… it’s okay to not be okay

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Living with multiple sclerosis can be crazy and unpredictable. I have yet to have two days the same. I have good days, bad days, terrible days, and what the $#*^ just happened days.

One day I was normal and the next it was like I had just gotten off one of the most exhausting, nauseating roller coaster rides of my life. My head was spinning, I couldn’t get my balance or catch my breath, and my vision was blurred. Try doing anything when your body is sending you those kinds of signals. It was like I was living on a perpetual roller coaster ride without a stop button or an ejection lever to help me escape.

At those times I get tired quickly and find it hard to move any part of my body. Even just lifting my arm seems impossible to do because I feel so weak. I have to coax my muscles to cooperate with me in order to do anything. At worse, I can’t get out of bed or even sit up without falling over. It’s at those times that I feel useless, tears flow, and depression sets in, after all I just want to have my life back but MS keeps taking things away.

I have to stop and remind myself that I’m needed and important. That I’m stronger than I think I am. It’s okay to fall apart and need help. I don’t have to do everything but there is always something I can do. Today I’m going to exercise as much as I can. That may seem impossible but my definition of exercise is much different now. I just need to move as much as I can. There are a few hand and finger exercises I have already been doing just to get my upper muscles going.

This morning as I’m bundled up on the couch due to it being cold in my house because I’m trying to save on using too much heat due to the costs, I see two beautiful deer munching on the grass along the tree line. Their playfulness makes me smile. I need that kind of carefree living. To just take things a day at a time and a moment at a time.

My plan today is to just enjoy my day regardless of what crops up… how about you?

A new year has begun

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It’s hard to believe that another year is over and a new year has begun. As they say “out with the old, in with the new,” right? It’s a new year, a new day, I have a fresh cup of coffee… same ole body. Hmm, that didn’t go as planned. I guess you can’t have everything you wish for. I tried wishing for a million dollars too but that didn’t work out for me either. I still have the same bills, house payments, piles of dirty laundry and dishes to clean.

I think the new and the old ran into each other and crashed into a pile on my bedroom floor. It even tried pulling me down there the other day. That accounts for the bruises I now have.

As I reflect over the year gone by, I realize I have experienced some truly wonderful, beautiful moments. Times that made me sing even though I can no longer carry a tune. Times that gave me great joy and created memories that I will hold on to for the rest of my life.

It has also been a year filled with pain, weariness and sorrow. Those are the times I wish I could forget but know I won’t because those moments are still a part of who I am. If nothing else, they have made me stronger. And trust me, I need all the strength I can get right about now.

Last year at this time with multiple sclerosis I was struggling with the use of my legs more than I ever thought possible. I couldn’t hold myself up in a standing position without support or use the recumbent bike in my exercise room without using stretchy bands to hold my legs into position by tying them around my calves in order to peddle without my legs flopping off their position. Rehab was my goal to gain further use of my legs.

Although rehab was well worth it and the exercises I learned I still do to this day, my legs never returned to their full function. Does that make me sad? Angry? Fearful? Sure. But I’m not going to let my disability stop me from living even if I do it from my chair shaking my trembling fist in the air at MS.

I know it’s not easy to find the good around you when the tears come so easy, but there is good out there. Being diagnosed with MS isn’t the end of the world so don’t let it ruin your year before it even gets started. There is a light shining through the darkness. And no, it’s not the light of a train barreling down the tracks heading in your direction. It’s hope.

Regardless of everything happening in your world and the weakness you feel in your body, choose to go into today filled with hope. Hope is the very thing that will get you through the struggle and keep you going when everything else around you appears to be falling apart. Hope that in spite of MS you will accomplish great things this year.

I hope for strength.
I hope for less pain.
I hope for laughter.
I hope for understanding.
I hope for pancakes, lots of coffee, and chocolate…definitely chocolate.

Out of everything I could hope for, most of all… I hope for hope.

Think back over last year. I’m sure you’ve had both beautiful and terrible moments. Times that make you still smile to this day and others that bring tears to your eyes. That’s called life… and you lived it. You experienced it. And although your experiences have changed how you do certain things, why you do them and when you do them, they haven’t changed the person that you are. You are still you.

You may live life differently than you have in times past. You may need additional tools to help you get through your day. You may get tired and weaker faster than before. You may even do everything slower. But you… YOU are not your MS.

You are an amazing, beautiful, lovely, awesome, precious, one-of-a-kind, delightfully unique individual. There is no one else in the entire universe like you. You have so much to offer the world, even with a disability. Don’t allow MS the satisfaction of stopping you from enjoying life or even from enjoying today.

As this year begins, choose to be thankful for all the beautiful moments you have waiting for you and choose to use the terrible times of yesterday as bricks to fill in the potholes along the way. I can’t promise you that the new year will be wonderful and void of any pain, but I can promise you that each brick you place along your MS journey, you are building a path that may ease the burdens of those that will come along behind you.

MS may only leave destruction in its path, but you are leaving a legacy of strength, resilience and beauty. You didn’t know you were doing all that, did you? Don’t ever underestimate your value and worth. You are priceless and those bricks… well, they just might be rubies, emeralds and diamonds which only get formed by pressure! You’ve had loads of pressure to build from. I’m proud of you for not giving up.