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.

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?

Thrive at Home This Holiday Season with MS

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Have you ever had this happen… a friend calls you up to invite you over for a get together. You would love to go but the challenge of a long drive, late hours, and lack of accessibility makes the decision for you. You politely decline but inside feel miserable because you realize how limiting your life has become.

There are times when having a disability is a great thing because you have an excuse to decline an invitation to a party you have no interest in going to or a reason to not help a friend move the furniture in their house. But it’s sad when you can’t join in on something you really want to be a part of.

Life changes with multiple sclerosis… which sucks. You find yourself making decisions based on how difficult it is to climb the stairs rather than on whether you have to pick up a gift and a platter of food on the way. The depression that weights on you can be hard to deal with and even overwhelming at times. It’s not an easy thing to come to terms with.

At this time of year it can become extra hard because you see people going out enjoying the holidays, spending time together shopping… doing all the able-bodied things people do that you are no longer capable of doing. It seems the winter months have this way of ushering in a sadness along with the cold and the snow. I’ve felt it myself at times. It can become overwhelming if you allow your thoughts to rule the day and slip into the “why me” places.

I know it’s hard, but try and find something good in the chaos. When you have to stay home, choose to have your own party in your PJ’s. Even if it’s a party all by yourself, have it anyway. Don’t let the fact that you can’t go somewhere get you down.

I have a party box filled with puzzles, colored pencils, coloring books, games, legos…all those creative things I played with as a kid. I pull it out and have fun. Strangely, it’s quite therapeutic and helps me to pass the time without turning the evening into a pity party. I like my PJ parties so much better.

So the next time you have to decline a friends invite, put on some festive PJ’s, make some hot cocoa and pull out your party box. I’ve grown to love these solo PJ parties. My box saved me from many a pity-party spirals, and now I’m off to mold a Play-Doh alien with googly eyes and spiky hair. Try it — Add scented candles, a favorite playlist, or a journal to doodle in. What’s in your party box? Share below or tag me on X — I can’t wait to hear!

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.