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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

 

See you next year…

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The Holidays are upon us and I want to let you know that I will be taking a break for the remainder of the year. Expect my blog posts to restart again early 2026. I will still be sparingly on Facebook and Twitter during this time. You can’t get rid of me entirely. (Grin)

I deserve this break and remember you deserve it too. I will be spending my time…

RELAXING

Regardless of how stressful my day is, I need to take time to de-stress and distance myself from blogging. You’d be amazed at how exhausting putting my thoughts into an understandable written form can be.

CONNECTING WITH OTHERS

I need a little bit of time set aside to spend with family and friends with no pressure to do anything other than just to be. Small talk, times of laughter, no agendas, and no time limits.

ENJOYING UNLIMITED COFFEE BREAKS

Oddly enough caffeine breaks for me are super effective and will be guilt free during this time.

Merry Christmas, Happy Hanukkah and Happy New Year to all.
I’ll see you soon.

There’s nothing I hate more than MS

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There’s nothing I hate more than multiple sclerosis. I could say liars, fake people, politics, bad punctuation, and people honking at me because I don’t drive fast enough… but those things just don’t come close to MS.

MS keeps me up at night. I toss and turn and even yawn all throughout the night but I don’t seem to sleep more than 2 hours at a time. It’s no wonder that I wake up exhausted. That’s not a productive sleep at all.

Because of MS my emotions seem to have a mind of their own and tend to go haywire without any provocation or reason. I have been known to cry without cause, laugh at seemingly sad moments, and forget what I’m doing while I’m doing it. That just adds to my crazy mixed up emotions.

I feel like a prisoner trapped in a dysfunctional broken body. Like I’m jailed up inside of myself without control over how my body will behave from one moment to the next. MS has taken over my life completely. So what am I to do?

Marilyn Monroe says it best. I never thought I would be quoting her.

This life is what you make it. No matter what, you’re going to mess up sometimes, it’s a universal truth. But the good part is you get to decide how you’re going to mess it up. Girls will be your friends – they’ll act like it anyway. But just remember, some come, some go. The ones that stay with you through everything – they’re your true best friends. Don’t let go of them. Also remember, sisters make the best friends in the world. As for lovers, well, they’ll come and go too. And baby, I hate to say it, most of them – actually pretty much all of them are going to break your heart, but you can’t give up because if you give up, you’ll never find your soulmate. You’ll never find that half who makes you whole and that goes for everything. Just because you fail once, doesn’t mean you’re gonna fail at everything. Keep trying, hold on, and always, always, always believe in yourself, because if you don’t, then who will, sweetie? So keep your head high, keep your chin up, and most importantly, keep smiling, because life’s a beautiful thing and there’s so much to smile about.
— Marilyn Monroe

Don’t worry about tomorrow. Live for today and be happy. It’s possible to do. Listen to  Bobby McFerrin and let the song brighten your day. It always does for me. It makes me smile no matter what is happening.

Is it possible to be thankful living with a chronic illness?

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We live in a world that is prone to complaining and arguing. Think about it… everywhere you turn people are discontent with their jobs, their home, their entertainment choices, their car, their families, their life, even their health. For some people it is hard to find anything that they are content with.

They complain about their work schedule, about forgetting an appointment, about the wait time at the doctor’s office, about prices at the store, about their boss’ attitude, and even about other people always complaining. People seem to be discontent in just about everything around them.

When we meet others with multiple sclerosis we discover we have a common animosity. I went to a meeting with other MSers after I was diagnosis with MS and I felt like I was at an AA meeting…

Hi, I’m Penelope and I have MS…  then everyone spent the time complaining about their struggles. Complaining just seemed to be a part of the culture. We all complained and in our complaining we bonded together.  I noticed that bitterness and complaining was contagious. When I left I felt worse than when I arrived. This world is so twisted.

Feeling sad about this time in my life or where multiple sclerosis is taking me is just not who I am. I decided I was going to change that kind of thinking. I was going to choose to be thankful instead.

I may be worse off than I was last year at this time but I still have a lot to be thankful for… I just have to look for it in the oddest of places. Do you know what happened when I changed my way of thinking? Did my life get better? Did MS go away? Did my pain cease to exist?

NO.

I admit that sometimes it’s hard to be thankful. Sometime it becomes difficult to see anything good around you but even in the middle of difficult times, goodness is there.

I made a casserole last week and forgot to add any spices to it. It looked delicious but sure didn’t taste like it. I’m thankful that I was able to whip up a batch of seasoning to add to the dish and I didn’t have to trash it. It was actually quite tasty.

The weather here is finally cold. Freezing cold. I don’t like the cold because my muscles freeze up with it. I woke up today to a cold, cold house and a body that wouldn’t move. I’m thankful for my heated blanket, my fuzzy slippers… and hot coffee. It’s a veg out kind of day. I’m thankful for those kinds of days.

Other things I’m thankful for… good friends, a fireplace even it’s fake flames, pumpkin pie, pizza delivery, family, my own home where I can feel safe and warm, laughter, love, pain because I wouldn’t feel the joy in this world without it, a full pantry, and hope for a better tomorrow.

Here in the USA it’s thanksgiving season… don’t spend it complaining. Allow yourself time to vent and to talk about the problems you are facing but once you let it all out… let it go. Complain less, live more. Your life is what you make of it. Fill it with gratitude.

I think you will find that you are more fortunate than you realize. What are you thankful for?

My Adventures in MS-Land

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The phrase “down the rabbit hole” comes from Alice’s Adventures in Wonderland, where a curious girl named Alice tumbles into a strange, topsy-turvy world after following a rabbit. One moment she’s on solid ground; the next, she’s falling into Wonderland, where logic bends and the unexpected becomes routine.

I, too, have fallen — unexpectedly — into a place I call MS-Land, a realm shaped by multiple sclerosis. Like Alice, I’ve learned to navigate its quirks, though my fall came with a stumble down the stairs, courtesy of MS’s unsteady grip.

In MS-Land, the rules grow “curiouser and curiouser,” as Alice might say. Take the riddle of what to eat and drink — it shifts daily. One day, rice feels like a safe haven; the next, it betrays me with fatigue. Coffee might lift me up, only to let me crash. Dietitians seem as lost as the Mad Hatter, each peddling a different tea party menu. I’ve decided to trust my own palate, forging a path through the chaos without a marketing firm’s glossy promises.

Deeper down the rabbit hole, I meet a cast of peculiar characters, not unlike Alice’s Cheshire Cat or Queen of Hearts. There’s the BusyBody, buzzing with unsolicited tips; the KnowItAll, lecturing me on cures; and the NoseyNeighbor, peering into my struggles. Their intentions may be kind, but their advice spins my head with confusion and dizziness — symptoms MS already amplifies. I’ve found their chatter less helpful than the silence of my own research.

That research has become my guide, revealing tools to navigate this strange land. Leg and foot braces steady my wobbly steps, walkers support my journey, and trapeze bars hoist me in bed. Wheelchairs and scooters ease my fatigue, while adjustable beds adapt to my needs. There are eating utensils I strap to my hands to prevent dropped forks or spoons, exercise bikes with seatbelts to keep me secure, and cooling vests to fend off summer’s heat. These are my Wonderland gadgets, practical magic in a world that defies normalcy.

Yet, the truest companions in MS-Land aren’t tools but people — those who know its terrain and challenge me with care. Like Alice’s wiser guides, they ask gentle questions: Is this choice serving you? Friends, family, mentors, or a counselor — they’re the ones willing to descend the rabbit hole with me, walking beside me as I map this unpredictable place. It’s okay to fear what lies below; the journey is less daunting when shared.

As I venture deeper, exhaustion creeps in, my thoughts tumbling like Alice’s after her fall. I muse — do brown cows give chocolate milk? It’s a silly distraction, and soon I doze off, dreaming of cows leaping over the moon, one landing softly on my toes. I wake, unharmed, still able to move. In MS-Land, even dreams offer a reprieve, a reminder of resilience.

We don’t need to dwell in the rabbit hole forever. Each trip down fosters a deeper connection — to myself, to others — unlocking an inner strength that flows from those bonds. I hope you, too, have companions ready to explore this strange land with you, no matter how odd the path. In MS-Land, as in Wonderland, the adventure shapes us, one curious step at a time.

I will never sugar coat my life with MS

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Have you ever had one of those days when you wished you could just curl up into a ball and hide away under the covers in bed because life was simply too much, too crazy and too overwhelming to bear? That was me yesterday. I woke up in tears… literally. That happens to me from time to time, only yesterday it hit me really hard. Harder than usual.

I hate when that happens. Sometimes no matter how hard I try to remain upbeat, positive and steadfast, I fail. It just goes to show that even people like me who strive to find the good in everything around them actually have times when they wish their out of control life could be put on hold and the pain had a pause button.

I’m human and I’m real. I will never sugar coat the difficulties of living with multiple sclerosis and I never want people to think that MS is a breeze to manage. Too many people out in the public don’t hear of the struggles we go through because too many MSers don’t talk enough about the truth of living with a chronic disease.

I am thankful for those living with minimal symptoms and that can handle the pain with ease at any given moment whether it be physical or emotional. But I know for a fact that’s not me. I talk about the struggles I face because I believe the more the public is made aware of what we experience, the more they will come to understand the reasons we have our unpredictable mood swings, cancel seemingly simple plans and spend so much of our time at home.

It’s not always easy for me to voice my needs. That’s because many times I don’t even know what I need in the first place. So when someone calls or stops by and asks how they can help out, I don’t always have an answer. It’s not because I’m being rude, antisocial or don’t want their help. Most of the time it’s because I simply can’t see past the pain in the moment to know what I truly need. That kind of thing requires too much thought and most of the time my brain just blanks out.

But I can tell you this, what ALWAYS helps is genuine care, concern, support and love. Those things help at any given moment and can be expressed through a simple “thinking of you” text, help around the house, offering to pick up some groceries, or just stopping by for a chat.

My greatest fear is to be forgotten in this fast paced, on-the-go world. It’s easy for that to happen too because many of us get to a place where socializing becomes extremely stressful and is filled with too many uncertainties and obstacles.

Getting out of the house requires great planning and considerations that many people don’t really think about. Will the place I’m going to be accessible for my needs? Will I have quick access to a bathroom when needed? Will I be in a place where I can remain cool? If a meal is involved, will someone be there to help me cut my food? If I get too tired (which is normally a given in my case), can I leave early? Does it cost because I live on a limited budget and even small expenditures are impossible to afford?

Any number of questions have to be considered in order to leave the house. Some days those questions are easy to answer, other times they are simply too much to face.

I woke up yesterday with my laugh-box broken because the questions in life smacked me in the face as soon as I woke up. If that ever happens to you, give yourself a break and allow yourself the needed time to grieve. Grieving is a real part of living with MS, and it’s okay to have those moments. Just try not to stay there.

I had my good cry already yesterday. The world may never see my tears, but they will always hear my pain. I refuse to be silent in the struggle.

Multiple Sclerosis: How it began in my life

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I woke up one morning about 14 years ago and knew something was wrong… really wrong. The day started out just like it always did. My alarm clock buzzed me awake declaring a new day had begun. I sat up, stretched really big and yawned, only as I rubbed my eyes I could tell something was different.

I sat in bed and realized I couldn’t feel the upper right-side of my face. It was such a strange feeling. It wasn’t like I could have slept wrong pinching a nerve in my face. Was that even possible? And I knew an elephant didn’t sit on my head during the night because elephants don’t live in my neighborhood. What was it?

I spent a few days contemplating its cause. I think I was more hoping it would simply go away than anything else, but each day I woke up to more of the same as the numbness kept growing on the right side of my body: my head, torso, arm, leg and even my vision. That’s when I became concerned.

My diagnosis was a quick one due to the increasing symptoms that began appearing all throughout my body. The MRI’s were indisputable. They showed the damage taking place inside my body. My immune system was having a picnic creating lesions in my brain and spine. They seemed to be starving and my Central Nervous System was their food of choice.

Ever since that day, multiple sclerosis has been tagging along with me trying its best to define me. I’ve tried to shake it loose, hide it away, deny its existence, and even ignore it in hopes it would find somewhere else to live, but no matter what I’ve tried, it seems to simply dig its heels in deeper refusing to move.

For whatever reason, MS has made its home in my body but even though it is a part of my life, it’s still not who I am. I am not my diagnosis. I am not my symptoms. I am not MS.

My identity isn’t tied up in this disease. But do you know what else I learned? My identity isn’t my career, my talents or my style either. Because of MS my career ended, my talents became a struggle and my style became simple. Life changed and in the change I discovered I wasn’t any of those things.

But if those things are not me, then who am I?

I’ll tell you who I am. I’m a fighter who refuses to give up. I’m a warrior in the making. I’m brave, I’m courageous and I will never surrender. That’s who I am. Sure, days get hard and I cry much more than I ever thought possible as the world comes crashing in on me, but somehow I rise above the despair, the pain, and the heartbreak. Somehow I get through my day. Somehow I make it through the struggle. My faith in God, my tenacity and my never quit sprit keeps me strong.

I’ve learned to be thankful in all circumstances. To look this disease of MS squarely in the eyes and say, “I am not defeated because of you and I will never give up.” Sometimes I have to do that while shaking my fist in the air as I remind myself that even though I feel weak and broken, I am still a winner.

I’m thankful for my weaknesses. I’m thankful because they show me just how strong I really am. You see, my strength isn’t measured by the amount of things I can or can’t do. If that were the case, I’d be in a whole lot of trouble. No, my strength is determined by the attitude I bring with me while going through the chaos I face daily.

Don’t let MS define you. Don’t let the bad days determine who you are. With each passing day, you are an amazing warrior standing strong even though your body is weak. Some days the battle will overwhelm you but you will also have days when you will overwhelm it. Stay in the fight. You are not your MS. You are amazing. You are fabulous. You are incredible. You are… well, you are YOU!

When did society stop caring for the sick?

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My biggest pet peeve is people who say one thing and then either do the exact opposite or nothing at all and prove themself to be untrustworthy. I’m finding it harder and harder to believe people will do what they say they will do…unless they are getting a paycheck in return (and even then they are not always trustworthy).

It’s sad really. As my health declines, my circle of friends have decreased with it. It seems that happens to everyone I talk to when it comes to living with a chronic illness. It’s easy to commit to helping someone for a month or two, but anything longer than that you become a burden to them and they find other things to take up their time.

When did society stop caring for the sick? It’s easy for someone to post a status online saying how much they care about others or share a cute picture of cats as well as ones of a beautiful flower garden to say they care, but to actually get their hands dirty and physically do something is waining. You just don’t see that happening much anymore.

People seem to want the recognition by the masses. They want the press coverage and plaques of achievement hanging on their wall to show off their accomplishments and prove that they care for others. I’m just sitting here at home needing my trash taken out and can offer a hug in return. Not much. But a hug will last much longer than any 15 minutes of fame. After all, a hug is eternal.

I am pretty good at faking being okay for a few hours if someone were to stop by to visit or I needed to go to the store. Make-up and hairspray does wonders. But come live with me for just a day and you will see how tough life with MS actually is.

Don’t just assume because I’m silent, that I’m okay. Most of the time I get tired of always asking people for help and getting excuses in return. That’s why I simply quit asking. Sure, you can fault me for that. I should be more persistent in voicing my needs. But the flip side to that is when I am persistent, I get a defensive response that basically becomes an “I’m sorry I can’t help you today, I’m busy” reply.

My advice: Hang onto those that have proven their word time and time again. Shower them with thanks and gratitude as often as you can so they know that their work and help is needed, valued and appreciated. Get creative and come up with a back-up plan for all the other people that disappoint you.

You might think you aren’t hurting enough. That there are people worse off than you and have been through more struggles. You may even think your story isn’t significant enough when you compare it to others and then the thought comes to your mind that people will think you are just seeking attention.

There is no measurement for pain, hurt and loneliness. No matter where you are in your story or what it looks like, it means something. Your pain is important because it’s yours. Your story can help other people continue their stories as well. Yes, all pain is different but there are things that we all share when the darkness comes and we feel hopeless.

At times you may even find yourself in a place where your thoughts fight back at you more viciously than they ever did before. Where you think and feel too much and just want to be numb to it all and left alone. 

I want you to know that you are valued.
You are important.
You exist.
You breathe.
You love.
You fight.
You hurt.
You feel.
And because of everything, because you are here in this world, you matter.

Never let other people’s actions keep you from knowing how amazingly incredible you really are. You truly are an beautiful person and not a burden. You may be living with an incurable, unrelenting, horrible disease, but you are AWESOME!

Multiple sclerosis is not a death sentence

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I think we all go through a stage at the beginning of being diagnosed with multiple sclerosis where we think life as we know it has ended. I used to tell people that MS is just two letters in the alphabet, it’s not a sentence! Sounds good to say but when you get a closer look at it by living with it, that kind of thinking changes.

As time went on I thought of it as more of a death sentence than simply 2 letters because it seemed to be the death of everything I knew. My mobility, my ability to feel and function in a regular capacity, the decline in my cognitive function, just so many changes to my bodily usage had decreased and caused me tremendous difficulties. So much so that I felt less human than anything else.

And with my bodies ability becoming so much worse it was more of a death sentence to me than anything else… yet when looking at all that I have endured I don’t see it as a death sentence at all. It more of a faster path to death but not a sentence. Life still happens and there are still moments of happiness and joy in the process.

You can be happy, even in a “broken” body. It may not seem like it now, but the truth is that you can build a happy, meaningful life for yourself, even if you’re never able to walk, hear, or even see like you used to.

It goes without saying that your disability has already changed your life in big ways. But with commitment, creativity, and a willingness to do things differently, you can reduce the impact your disability has on your life.

While you can’t go back in time to a healthier you or wish away your limitations, you can change the way you think about and cope with your disability. You are still in control of your life and there are many ways to improve your independence, sense of empowerment, and outlook. No matter your disability, it’s entirely possible to overcome the challenges you face and enjoy a full—and fulfilling—life.

Don’t let MS control you, you be the one in control. You’ve got this!

Never regret… today’s a chance at living

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I woke up this morning, made my way to the closet to get dressed and the first thought that popped into my head was “Ugh, another day with multiple sclerosis.” As soon as that thought showed up I knew it wasn’t a wonderful cheery thing to be thinking. But hey, I’m human and thoughts like that happen.

The day hadn’t even officially begun and I was already thinking about how my powerchair has become my best friend rather than a pair of running shoes even though my new powerchair has yet to arrive. I also thought about the pile of dirty clothes that needs to be washed and yet how I have zero energy to load the washing machine to even get the first load started. About how much pain my body is in every second of every day. About how extra hard everything in life seems to be now from putting on my socks, to brushing my teeth, to filling up the gas tank in my van, to buying toilet paper.

We all have moments when thoughts like that appear. Thoughts that we really don’t want to be thinking but show up anyway. I know I’m not the only one waking up wishing that MS didn’t exist and having a woe-is-me morning.

As I pondered my dreary, self-focused morning thoughts I realized fairly quickly that I needed to adjust my thinking. Today, this very day that I woke up to dreading, is someone else’s chance at living. How can I throw that away? How can I waste 24 hours – time that I can never get back – choosing to fill it with sadness and regrets.

This day called today… the day that I woke up to feeling exhausted and disappointed in because of MS. Yes, this very day is a blessing to someone else. All of those things I woke up dreading are seen as a blessing in someone else’s world.

There are people today thankful for the chance to fix things they messed up yesterday, thankful to spend one more day with their family and friends, thankful for the pain they have to endure because it simply means they are alive, thankful for an opportunity to see a doctor even if that means they have to travel hundreds of miles to get there, thankful to have a wheelchair even if it’s second-hand, worn out and falling apart.

I can choose to be one of those grateful, thankful people or decide to waste away my day on regrets and sorrows. And so can you.

How about I start things over?

Good morning, sunshine…today is a new day. It’s a chance to do something great. It’s an opportunity to truly live and make a difference. There is only one today and each second of it is precious.

Don’t waste the day pondering regrets and sorrows from your woulda, coulda, shoulda thoughts. Invest your time into the lives of those around you and into yourself as well. It’s worth it. You’re worth it.