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.

Get the Book

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?

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.