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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.

 

 

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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?

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!

Multiple Sclerosis flipped my life upside down

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Over the years, there have been things that have tried to steal my smile. I have dealt with things that no one should have to face and still be standing to tell about it, but here I am… smiling. I tell you that because I want you to understand that we all have a dysfunctional, messed up, broken past. No one has the perfect life. We all have a past, we all have hurts, we all have dirty laundry, add to that a diagnosis of multiple sclerosis and I’d say my life has been pretty messed up.

Many times we are so focused on the big things happening that we often miss the little ones that really make a difference, yet it’s those little ones that make up our days and truly make our lives go around. I think sometimes we get so busy looking for the perfect place to live, the perfect job, the perfect spouse, the perfect kids, the perfect health, that we often forget what really makes our lives enjoyable. It isn’t the big perfect anything. What brings smiles to our faces are the little things that get us through our days and most importantly, through the hard times.

Sometimes it’s just a phone call from a friend or a person holding the door open for you at a restaurant. Sometimes it’s having a child hand you a fist full of weeds or being able to put freshly washed sheets on the bed. Sometimes it’s quiet times in the morning or noisy times at dinner. Sometimes it’s things you can’t even explain because it’s just a feeling you get deep inside.

It seems the big things are what flip our world upside down and it’s the little things that turn it right side up again. Without the little things, I think the world will end as we know it. It’s the little things that hold everything together.

Take time today to enjoy the small moments that bring you joy, and just so you don’t forget about them, take time to write them down. This way you will have a forever memory of those special moments. Fill the pages of a blank book, a notebook, a memory book, a computer text document or what I like to call a gratitude journal, with your happy thoughts; those things that made your day extra special or brought a smile to your face.

This way, when you are having a terrible upside-down day, you can read through those memories and find a smile to set things right again. Trust me… it helps. When I pull mine out and begin to read, without fail, I find myself smiling and sometimes even laughing. Those smiles and laughs, those memories… they happen because of the little things.

Make the most of your day today, live in the moment, and never forget the little things that get you through the darkest of times.

How do you live with MS? You just do it!

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You have been through so much lately. You’ve crossed hurdle after hurdle going from one doctor’s appointment to the next. You’ve made your way through danger more than once in the past year alone. You’ve climbed mountains that no one even thought were scalable and yet you overcame the odds. Every day seems to present itself with challenges, but somehow you find a way to get through them.

Admittedly, you don’t always win. You don’t always cross the finish line at the end of the day, but the most important thing is that you never quit. Sometimes you find yourself questioning everything happening in your life. Sometimes the dreaded questions “why me?” and “why now?” run through your thoughts but they never seem to come with definable answers, only more questions.

What do you do when faced with a life of multiple sclerosis? Where do you go from here once diagnosed? How are you supposed to function in an able-bodied world that doesn’t seem to understand the complexities of living with MS?

The answer…you just do it!

You drag yourself out of bed each morning exhausted, weary, overwhelmed, and at times feeling completely defeated, but you make your way through the struggle in your day anyway. Some days are better than others. Some days you can walk, other days you can’t. Some days you find yourself laughing, other days even a giggle seems impossible. But you do it anyway.

Today may be one of those impossible, unimaginably difficult days. I won’t lie to you, regardless of what complications MS has given you, a life with MS is hard. There are surprises around every corner; some good, some bad.

Sadly, a majority of the awareness campaigns for MS don’t actually tell the world how ugly MS can be. They show the smiles and the brave souls walking their way through a 5k trek with their arms raised in victory, but what about those who can’t walk? Or the ones that have trouble speaking, breathing, eating, seeing or functioning in a so called “normal” world? Why are those people never seen or shown as the face of MS?

Yes, there have been great strides made in helping people manage their MS symptoms and new treatments are being discovered that help slow its progression down. For that I’m enormously thankful. But when is the public going to see that MS isn’t just an “Oh, well it could be worse” kind of disease? When are they going to be shown the reality of what it actually does to a person’s life and body?

My hope is that some day soon people will see the reason we fight so hard every day, but also the pain we endure. That they will understand just how much we overcome on a daily basis. That we may put on a brave face, but deep inside we carry around an uncertainty of how long we will be able to wear our brave.

Every person fighting MS is brave, every one is amazingly strong, and every one is on a journey of uncertainty. We hope for a better tomorrow but we also hope for a world that will truly see MS for what it really is…a chronic progressive disabling neurological disease that has no known cure.

It’s time we let the public see the ugly side of MS and why we so desperately need a cure.

When opinions become facts

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Knowledge can be powerful, but you can’t misinterpret a tiny glimpse of information about multiple sclerosis and then declare to the world that you know all about it… both the cause and a cure. Many people are even pushing their own products as support for their theories. It’s all a scam for get rich quackery. After all who else can make money today but the fakers and the takers.

Big pharma has been a great example. Push a product with no actual facts as a cure and people will buy it by the droves. No proof needed. Just spout off a few unapproved statistics and you’re gold… rolling in it that is.

To those online experts that talk about MS as if it’s cured I say…I wish you could live in my body for a day. You would quickly give up your degree in neurology. Oh, wait, you didn’t go to medical school. You got all your schooling from Uncle Fakealot and Dr Google. In that case, you need to fire Uncle Fakealot and even more importantly give up your university degree. 9 times out of 10 Dr. Google is WRONG.

But really, the internet isn’t what’s wrong. It’s people. We live in this weird period of time where people try to solve all of the world’s problems with bite-sized theories, unproven statistics and wacky medical solutions. Gone are the days of real knowledge. Opinions have become truth and everyone is an expert.

No one is wrong in how they go about living with MS. There are always things we could do better and new things to learn, but NEVER should we act as if we are the guru of all knowledge and wisdom regarding something as unknowable as MS and the human body, because we aren’t. Even doctors aren’t, they are all just practicing. That’s why their business is called a practice.

Don’t let anyone make you feel bad because they chose a different path than you. You be you and do what you know you need to do for yourself. You know your body better because you are the one actually living in it. Be unique, be crazy, make a mess, try new things, make mistakes, and even succeed…but most of all, hang onto the smiles around you and enjoy living.

There’s only one you and only one today, but there is a potential for lots of smiles to help you through this mess called life. Choose to find the smiles.

Comparing yourself to others is a losing battle

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Either way you look at it, comparisons tend to be bad for us. They are bothersome at the very least. From birth our parents start comparing us with other children. Simultaneously, our teachers and coaches compare us with other children. We compare everything and anything these days. We compare our incomes, our houses, cars, children, and yes even our illnesses. In doing so, even if we feel we win in comparison, WE LOSE!

Just as we are all unique and cannot be compared, it is the same with illnesses. There is NO illness worse than another. ALL illness is terrible. When a person compares someone who has multiple sclerosis with someone that has another illness, they are speaking from a lack of understanding and through filtered lenses. No one can know what someone is experiencing unless they crawled into that person’s body to feel what they feel, and experience what they experience.

One of the most awful experiences is when you share your illness with someone and they proceed to tell you how their approach to MS or some other ailment is the only way you should be living? That you need to adjust your diet and get rid of meat, diet soda, and gluten. That because you aren’t living like they say, you are doing it all wrong? That if you only _____ (fill in the blank) you would feel better?

It can get extremely frustrating when someone assumes they know your body and your journey better than you do. Comparing illnesses or even progressions of the same illness between two different people never works out. When someone does the comparing like that, they have fallen victim to comparisons.

The problem with focusing on other people’s achievements is that you will never measure up. It can make you dissatisfied with your own daily activities and even gives you less strength to keep working towards greater things. Comparison is a thief of joy.

Instead of seeing how you measure up to another person, analyze yourself and ask yourself how well you are doing with the things you need to be doing for yourself. The only one we should ever compare ourselves to is ourselves…

Stay focused on your goals and what you want for life. There is only one of YOU in this world, don’t waste time comparing yourself to others. Instead, make your life count. Striving to live a life that is authentic to your own personal goals.

In the process, don’t get caught up in the envy of another person’s successes or goals attained. Envy is the emotion that you experience when someone else has or does something that you wish you could have or do. If another person gets positive results from a medication or a treatment that you wanted, it is natural to feel a jealous twinge. Instead, consider sending a note of congratulations and enjoying their success.

Focusing on gratitude helps, because much of what you’re grateful for involves the people around you… individuals who have looked out for you, mentored you, and cared for you when you were are your worst. That makes gratitude a wonderful antidote to negative comparisons. It reminds you that there are a lot of people around you who are contributing to your success and who love you.

You are loved for who you are. Don’t you ever forget that.