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You Don’t Get Over Multiple Sclerosis

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Have you ever mentioned a new multiple sclerosis symptom and been told to “get over it”? I’ve always found that response strange. Get over what, exactly? The pain? The fear? A chronic illness that doesn’t leave? What am I supposed to get over?

You don’t just get over something you live with every day, every hour. It’s easy for someone outside your body to say “get over it” when they aren’t the ones dealing with the symptoms, but a person doesn’t get over multiple sclerosis. They live with it.

I have no control over how my body will feel from one day to the next—or even from one hour to the next. One day I may feel relatively okay. The next day it can feel like I’ve been hit by two Mack trucks. I can’t decide how my body will behave, so how am I supposed to simply “get over it”?

People often respond differently to temporary problems than to ongoing ones. If I had a broken arm, most people would offer to open doors or carry things for me. A broken arm is visible and temporary. Once the cast comes off, the need disappears and life returns to normal. A chronic illness doesn’t work that way. It doesn’t go away no matter how much anyone wishes it would. That’s why expecting someone in the middle of pain, weakness, or another MS symptom to just “get over it” doesn’t make sense. It isn’t a decision.

“Today I’m going to ignore that my legs don’t work, get over it, and walk across the room.” That doesn’t make multiple sclerosis disappear. Ignoring it doesn’t work.

Often, the people who offer that kind of advice are frustrated. They want you to be over it so they don’t have to keep adjusting or dealing with the unexpected. Most people genuinely want to help, but they also want the problem to go away so their own lives stay uncomplicated. They’re thinking about their own inconvenience as much as your struggle.

Don’t apologize for hurting or needing help. Don’t let someone else’s response make you feel guilty for having a hard day. You are the one living with MS, and you have the right to feel what you feel. Many people with MS stay quiet about their symptoms for this reason—they don’t want to be seen as a burden when they know the challenges are ongoing.

But you are not a burden. You have a burden, and by definition a burden is something too heavy to carry alone. Don’t be afraid to ask for help. The people who are meant to stay will ask how they can help lighten that load when they can. Let the others go.

 

The Wobbly Bunch

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When Fatigue Shows Up Uninvited

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Have you ever had every intention of getting something done before the day was over, only for it not to happen? I’m a pro at that. I can put something at the top of my to-do list, set a phone alert to remind me, and still end up so exhausted that I barely have the energy to lift my arms—or even my head. Whatever was on the list simply isn’t getting done.

That happened yesterday. I had plans to clean the bathroom and take out the trash. Both seem simple enough, right? They are—until fatigue decides to pay me a visit.

Once fatigue shows up, you can forget about me getting anything done. It’s one of the most unwelcome guests in my life, second only to multiple sclerosis itself. Fatigue can strike early in the morning (sometimes as soon as I open my eyes), after my shower, partway through the day, or even in the middle of an important task. Its schedule is completely random, and it has no intention of sharing the itinerary with me.

I’ve had to learn to go with the flow on a daily basis. That’s not always easy, but it’s necessary if I’m going to make it through the chaos that surrounds me. One thing MS has done is teach me to value life far more than I ever did before and not take things—like being able to work—for granted. Work used to be my passion. Now that my career is a thing of the past, living has become my new one.

MS changed things. It made life more difficult in some ways, but it also gave me a different perspective. I see how precious each day is, how special the people who care are, and how short life can actually be.

I woke up this morning to a new day. My phone reminders are ready with a few things I need to get done, but I’m okay if I have to shift things around—or if I fall asleep and miss out on everything. Life is too short to get caught up in the land of to-dos.

Instead, I’ve made a to-don’t list. For me, it’s made life with MS so much easier to manage:

  • Don’t hide your struggle.
  • Don’t try to conquer everything all at once.
  • Don’t dwell on what could have, should have, or would have been.
  • Don’t let stupid things get to you.
  • Don’t hold onto hate.
  • Don’t place irrational conditions on your day.
  • Don’t neglect the people who have stuck around.
  • Don’t cry over spilled milk.
  • Don’t forget to find reasons to smile.
  • Don’t compare your journey with others.
  • Don’t take anything for granted.
  • Don’t lose your sense of humor.
  • Don’t worry so much.
  • Don’t wait for the perfect timing.
  • Don’t give up.

This list doesn’t erase the fatigue or the hard days, but it helps me show up for the life I actually have—messy, unpredictable, and still worth living. Some days that means checking things off. Other days it means letting the list go and simply getting through. Both count.

 

The Wobbly Bunch

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The Day I Ended My Career

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One of the most difficult days of my life was the day I handed my boss the resignation letter that ended my career. I had been raised to take pride in my work and to work hard to make something of myself. Quitting didn’t fit that mindset. It went against everything I knew.

I loved my work, but as each day passed I could see the drastic decline in my abilities. I was continually missing deadlines and would forget how to do even the simplest tasks. What I had enjoyed so much had become a struggle. I tried for months to make it work, covering up my mistakes with quick-witted replies and longer hours, but deep down I knew it was time to make a change. I also knew my decline was pulling the people around me down, and they deserved better than what I was able to give.

The thought of no longer working ripped me apart inside. I knew my work did not define me, but I could feel life changing so fast that it scared me. Life wasn’t supposed to turn out this way. MS wasn’t supposed to happen.

The worst part for me was when my last day finally came—the day I shut down my computer and turned the light off for the last time in my office. There were no farewells or goodbyes, no cakes or cards, nothing to even suggest that my entire life was about to change. That day ended just like every other day.

I remember walking to my car doing everything I could to hold back the tears. My thoughts were screaming, “Doesn’t anybody care? My life is over. I’m scared and don’t know what I’m going to do,” but no one could hear the screams. No one saw the tears.

That night I cried myself to sleep. Depression hit hard. I didn’t want to do anything or go anywhere. My life became filled with PJs, TV reruns, and tears. The grieving was real, and it was slowly taking over. The worthlessness I felt was overwhelming.

The emotional roller coaster took me completely by surprise. After all, I had always been the positive one—the person who could find the good in anything. But where was the good in a lifelong career coming to an end? Where was the good in MS taking away something I loved? I just couldn’t see it.

It took time and a lot of hard work to pull myself out of the despair that swallowed me. It wasn’t easy. I had to keep reminding myself every day that my work did not define me and neither did MS. I would tell myself, “I am who I am. I’m pretty spectacular and uniquely amazing at that—not because of what I can or can’t do. Just because I’m me.”

Eventually I stood tall again, but I still have moments when a rush of tears shows up. Even just yesterday, as I sat on my couch reflecting on my life, the tears came.

I don’t think people looking in from the outside truly understand the extent of the pain and heartbreak that can come with a chronic illness that slowly steals bits and pieces of your life. That kind of crushing and breaking… I hope others don’t have to go through it, but I know many will.

If you’re in a storm right now, know that no matter how hopeless things appear today, there can be a brighter tomorrow. Keep moving through the tears and the pain. MS doesn’t get the final say. Plans may have to change and you may have to shift how you do things, but you are still in charge of your life. Cry if you need to—even scream if that helps you release some of the pain—but give your heart time to heal. The unknown is terrifying, especially when you can’t see the road in front of you. But you aren’t a failure, stupid, or broken. You are somebody. And being somebody is the best thing anybody could ever be.

 

The Wobbly Bunch

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Living stress free… is that even possible?

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Stress is not a good combination with multiple sclerosis. I hear all the time how stress needs to be limited to keep from triggering an exacerbation, but how do you do that in a world full of “I want it now” people and “it can’t wait” situations?

There are hundreds of lists on the internet explaining what you can do to avoid stress, but listing things out and doing them are two different things. Then if you add MS into the mix of things, it seems an impossibility.

Maybe your day starts something like this…

You wake up in the morning to a busy day planned. You didn’t hear the alarm clock earlier so you are already being rushed to get your day started. It’s early, you’re exhausted and your body isn’t cooperating. You take a shower, and even though you did every cool down technique you know, your body is simply too weak to keep going at the fast pace you have set for yourself.

You take a moment to rest then push on to get dressed so you can get out the door to make up for missed time. All the while, playing through your head is a rundown of everything you must do today. You have lists created, app alarms set on your phone to remind you of your time constraints and post-it notes scattered everywhere.

You do your best to hold back your frustrations but before you have even left the house to begin the day, you are feeling overwhelmed and defeated.  Somehow MS just doesn’t fit into a busy day and somehow you always seem to forget that tiny little fact.

The unexpected happens much more often now that MS is a part of your world. You get tired faster, weak muscles limit your functionality, your vision messes with your ability to complete even the simplest of tasks, dizziness and vertigo trip you up, and your thinking gets all muddled in the process. It’s hard planning for the MS unexpected. I always say a life with Multiple Sclerosis is like a box of chocolates…you never know what you’re gonna get. (Thanks Forest Gump for the inspiration.)

I have discovered that stress makes you extremely tired and can cause MS to worsen, but it’s stressful to avoid stress so you end up stressed out anyway. It’s really not easy trying to avoid stress. Ugh…just thinking about it is stressing me out.

So how do you fit a life with MS into a stress free list found on the internet? Well, for me that’s an impossibility. It seems MS doesn’t like lists or plans. It kind of has a mind of its own and doesn’t seem to want me to know ahead of time what it has in store for me throughout the day.

When life become overwhelming, and many times even before it gets to that point, I find that I need to take a moment to step back from all my commitments, work, and obligations. I need to take a moment to pause and re-examine everything. Literally.

Is there anything I could change or remove from my day that would help ease the load? Do I really need to vacuum the house today, tomorrow or even next week? If I wait and take a shower before I go to bed rather than when I get up in the morning, will it help? Can I recruit someone to pick up a few things from the store for me so I don’t have to go? Will the world fall apart if the laundry isn’t finished?

You are more important than the chaos that surrounds you and way more important than the stress that it can cause. Work on changing your workload bit by bit, little by little, moment by moment. You won’t be able to quit everything (which I happen to think would be nice to do at times) and you won’t be able to stop the world from spinning out of control, but you can make a positive change in your own life.

Take time to slowly work your way out of those over-commitments by finding others willing to step in and help. You may need to juggle schedules around and say no to people you normally wouldn’t say no to, but in order to simplify your life and relieve the pressures weighting you down, you have to do it. It’s not an option.

Do what you can today and leave the rest for another day. Take one step closer to living stress free, and before you know it you will be enjoying your life….even with multiple sclerosis.

 

The Wobbly Bunch

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Well… hello again!

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After regularly blogging about my multiple sclerosis life since diagnosis in 2013, I stepped away for more than 8 months. If I’m being honest, I wasn’t sure when—or even if—I would return to blogging. Life has a funny way of filling up our calendars, shifting our priorities, and convincing us that we’ll “get back to it next week.”

As it turns out, next week took a little longer than expected. But here we are!

Coming back feels a bit like opening a favorite book you’ve been meaning to finish. Everything feels familiar, yet somehow brand new. There’s excitement, a touch of nervousness, and a whole lot of ideas waiting to spill onto the page.

During my time away, life didn’t stop. I learned new things, picked up different perspectives, celebrated wins, stumbled through challenges, and collected stories worth sharing. Sometimes stepping away gives us exactly what we need: fresh experiences that make us better storytellers.

So why return now?

Because I missed it.

This time around you can expect a little bit of everything — stories from everyday life, lessons learned, things that inspire me, practical tips, occasional adventures, and probably a few unexpected rabbit holes. If something catches my attention or sparks my curiosity, chances are it’ll find its way into a blog post.

Think of this as a fresh chapter rather than a restart. The past posts helped me get here, and the next ones will continue the journey.

This site is entirely human-created and it always will be. If you’re sick and tired of reading AI junk – I know that I am! – I urge you to support a human writer and fellow MSer who maintains a blog like this by visiting frequently, sharing links to posts, adding your comments at the end of the posts you have something to say about, and, when deserved, sending a donation to help me cover the costs. This is currently an ad-free, subscription-free blog and I’d like to keep it that way. But your participation is what motivates me to keep writing.

Let’s make this chapter a fun one. I already have some great content for next week’s blog. Every Thursday… be ready for a great new read.

And if you haven’t seen the great new, I have just published a book. Check it out on Amazon- “The Wobbly Bunch: Funny Takes on Living with Multiple Sclerosis”. I’m sure you will enjoy it. There’s nothing better than laughing, especially when you most need it.

The Wobbly Bunch

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The Wobbly Bunch: Funny Takes on Living with Multiple Sclerosis

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My new book is finally here. You don’t want to miss getting a copy for yourself. It’s filled with illustrations about life with multiple sclerosis.

Are you looking for a laugh? Make humor a main ingredient in your MS life. Whether you are looking for a smile, a sarcastic meme, or just a good laugh, The Wobbly Bunch has it all. Sometimes you just gotta laugh to keep from crying.

You can get a copy from Amazon. A paperback, hardcover, or e-book for a Kindle or any other type of tablet.

The Wobbly Bunch is a small illustrated humor book filled with short one-liners about the unpredictable, frustrating, and surprisingly funny side of living with MS. Each page features one joke and a simple cartoon of the characters who personify those symptoms: Roly Poly, Zippy, Twitchy, Sleepy, and Dizzy.

This is not a medical guide and it is not meant to replace professional advice. It is a light, honest look at fatigue, brain fog, balance problems, pain, and all the other uninvited guests that come with multiple sclerosis.

It is for anyone living with MS, anyone who loves someone with MS, and anyone who could use a smile on a hard day. The pages are easy to flip through, one little laugh at a time.

Take your time. Savor the moment. And enjoy.

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Goodnight, Moon: A See-You-Later from Positive Living with MS

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Decluttering started in my kitchen, and now it’s reaching my website. After a lot of reflection, I’ve made the difficult decision to stop writing my weekly blog posts. I wasn’t able to raise the funds needed to keep the site running, and I see that as a clear sign it’s time to let this chapter close.

I want to thank every single one of you from the bottom of my heart — for your support, your comments, your shares, and the way you’ve walked this journey with me. This little corner of the internet has been a safe place to laugh, cry, vent, and find hope together, and I’ll always be grateful for the connections we’ve built here.

This isn’t a forever goodbye; it’s more of a “see you later.” You can still find me on X (@PositiveWithMS) and Facebook, where I’ll pop in to share thoughts, encouragement, and maybe a silly meme or two when I can. Let’s keep the conversation going in those spaces and even beyond the screen when life allows.

For now, I’m stepping back to focus more on the present moment, on resting, on caring for my health, and on whatever comes next. I’ll miss this space and so many of you, but I’m also looking forward to what’s ahead.

So for now, I say goodnight to this beautiful chapter. Goodnight, moon. Goodnight, stars. Goodnight, Positive Living with MS.

If you ever need a reminder: You are strong, brilliant, and incredible — mighty MS warriors every one of you. Never forget that. Keep shining, keep fighting, and know I’m cheering you on from wherever this path takes me.

With love and gratitude,
Penelope

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.

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.

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?