“No” is not a bad word

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I woke up in tears yesterday. No reason. Nothing bad happened to me in the middle of the night. I didn’t wake up from a nightmare, my goldfish didn’t die and I wasn’t in a lot of unbearable pain. My emotions just went haywire all on their own. I hate when that happens. I take meds to help keep my emotions stabilized, but yesterday’s dose must have been a dud.

Multiple Sclerosis has this way of messing with a person’s emotions. Sometimes there’s a valid reason for the crazy mood swings we experience. Things like the fact that we are dealing with daily challenges and changes in life that sometimes become overwhelming and difficult to handle.

But there are actual times when our emotions get all out of whack for no reason other than the fact that the wiring in our brain is short circuiting and playing around with our emotions. That really happens. MS messes with my ability to walk, think, talk, see, and sometimes it seems to get bored doing all of that and decides to get its awful little hands on how I feel too. It seems nothing is off limits to this monster.

When a friend got to my house for her planned visit, I was sobbing into a sock. (Don’t judge. I didn’t have any tissue nearby so I used what I had. Besides, surprisingly enough socks actually work pretty good as tissues.) Just having her with me helped to calm my tears.

Sometimes someone assuring you that things are going to be okay really does help. Sometimes all we need is a hug, a kind word, a gentle touch, or a hand to hold. Although those things don’t change what’s happening in our life or restructure our brains, they comfort the heart.

I won’t lie to you, life with MS can be tough at times. I go through periods when I simply want to get away from it all…no distractions, no phone calls, no text messages, no people, no MS (now, that one I can’t seem to get away from), no anything. It’s at those times when I will curl up in my comfy overstuffed chair, turn my phone off and do absolutely nothing.

I know it seems impossible to be able to do nothing because even doing nothing is doing something, but somehow I manage to do it. Wait a minute, maybe I really am doing something when I think I’m doing nothing but since my brain scatters my thoughts I forget the something I was supposed to be doing which turns it into nothing. Now there’s a thought to ponder.

When I take the time to get away from the mess that is overtaking my life into a place of solitude, I come back better focused and my emotions calm down. Sometimes it’s takes just 5 minutes of being away to regroup my thoughts. Other times it’s more like 30 minutes, an hour or even a day. But that pause does something magical and helps me to tackle even the hardest of tasks.

I can remember the times when my workload would become intense at my job. The pressure, the stress…it would become overwhelming. When that happened, I would walk away from my desk and lock myself in a bathroom stall down the hall to just pause and breathe. That was the only place I knew I could truly be alone and get away from everyone and everything. Somehow time stood still for me in the bathroom.

I know that sounds weird to some people, but short breaks like that really help. We all need a place where we can get away from the craziness in life and be able to focus on things other than MS, medical bills and the to-do list that never seems to get done.

I sometimes went to my car at lunch time to be alone and would even take a nap to clear my mind. Don’t feel guilty stepping away to take a pause. Take the time you need even if that means telling someone “no.”

If I could reach through the screen to you, I’d hold your hand and remind you of how truly amazing you are. I’d listen to you talk about your struggles, your challenges, your fears, and remind you that no matter what you’re facing, you are strong enough… much stronger than you give yourself credit for. I’d cry with you, make you giggle and let you have my last cookie. (You know you’re special if I share my cookies with you.)

If today is a “cry in your oatmeal” kind of day… go ahead and cry. It’s okay to do that. Let it all out. Then dry your tears and remind yourself that you are a champion, a winner, a warrior. You may not feel like one, but you are and all warriors need a break. Sometimes just a little pause makes a world of difference.

Don’t stop trying to be the best that you can be regardless of MS or whatever else you may be facing. You are stronger than you think. I believe in you. Love yourself enough to set boundaries.

Life in Scleropolis

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In the heart of the bustling city of Scleropolis, where the sky often mirrored the spectrum of human emotions, lived a community of unique individuals, each bound by a common thread—multiple sclerosis. Here, the disease wasn’t a shadow lurking in the corners of life but a character in its narrative, shaping the city’s culture, architecture, and daily interactions.

Scleropolis was known for its adaptive architecture. Buildings featured ramps with gentle inclines, wide doorways, and floors covered in soft, durable materials to ease the journey of those with mobility challenges. The city center was a mosaic of vibrant colors, with public art installations that celebrated resilience and adaptability.

Our story follows three residents, each with their own tale intertwined with MS:

Mira, the artist, had her hands dance less freely with time, but her vision remained sharp. She pioneered a technique in painting, using eye-tracking technology to create breathtaking murals that adorned the city’s walls. Her latest piece, “The Dance of Nerves,” depicted the erratic yet beautiful patterns of nerve impulses, turning her personal battle into a public celebration of life’s unpredictability.

Leo, once a marathon runner, now navigated life with a cane but had found new purpose as the city’s chief urban planner. His firsthand experience with MS led him to design pathways and parks that not only catered to those with mobility aids but also encouraged community interaction. His project, “The Path of Unity,” was a trail that meandered through Scleropolis, where every bench was a communication hub, and every lamp post bore a plaque with stories of local heroes—many of whom had MS.

Elijah, the tech-guru, had turned his fatigue and cognitive challenges into motivation. He developed an app called “Sclero-Mate,” which not only helped manage medication schedules and symptoms but also connected users to support groups, local events, and even job opportunities tailored for those with fluctuating health conditions. His app became the lifeline for many, fostering a network of support where isolation once thrived.

In Scleropolis, every day was an unspoken festival of human spirit. The city held annual events like the “Walk and Roll,” where everyone, regardless of their mobility, participated in a parade through the city, showcasing inventions, art, and stories. Music filled the air, not just from the bands but from the city’s heartbeat, the collective resilience of its people.

One chilly morning, as the sun pierced through the fog, Mira, Leo, and Elijah met at the “Square of Beginnings,” where a new community center was to be unveiled. This center, a project they all contributed to, was designed to be a hub for creativity, health, and technology, embodying the ethos of Scleropolis.

As they stood there, watching the community gather, a sense of profound connection washed over them. Here, in Scleropolis, MS was not just about the struggles; it was about the stories, the adaptations, and the unyielding human spirit. The city was a testament to living not in spite of MS but with it, turning what many see as a limitation into a canvas of possibilities.

The narrative of Scleropolis was one of inspiration, reminding everyone that life, like the neurons in a human body, can find new pathways, new dances, and new songs to sing, even when the old ones fade.

A year of new beginnings

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There are resolutions we set all throughout the year: For a car or house payment to be made on time, for medications to be taken as prescribed, for being good to yourself… so many things. They are thought of more as commitments, but they are resolutions. When I looked it up in the dictionary, a resolutions is a promise to yourself to do or to not do something.

For me I work to make sure my bed is made every morning. It’s just something I have done since I was little and not making it kind of sets me on edge. I will make sure I do the work even when I’m feeling miserable. I also make sure I use my calendar to help me keep my finances in order, set schedules to make sure my nails get trimmed and my hair is cut, and also plan my house cleaning is small sections at a time. This way eventually everything gets cleaned no matter how immobile I become. It’s taken a lot of trial and error but eventually I have made a system that works for me.

Keeping a resolution involves several strategies to ensure you maintain motivation and commitment. If there is something you want to do better in 2025, here are some practical steps to help you get there.

1. Set Realistic Goals

Be Specific: Instead of “I want to lose weight,” say “I will lose 10 pounds in 3 months by exercising 3 times a week.”
Make it Attainable: Ensure your goals are within your capability to avoid discouragement.

2. Break It Down

Divide your resolution into smaller, manageable tasks. For example, if your resolution is to read more, set a goal to read 20 pages each night.

3. Plan and Schedule

Create a Timeline: Use a calendar or planner to schedule when you’ll work on your resolution.
Routine: Incorporate your new habit into your daily routine to make it a part of your life.

4. Track Your Progress

Use apps, journals, or visual charts to keep track of your progress. Seeing how far you’ve come can be motivating.

5. Accountability

Buddy System: Find a friend or family member with a similar goal or who can support you. Sharing your progress can increase commitment. Sometimes, telling others about your resolution can add an extra layer of accountability.

6. Reward Yourself

Set up small rewards for achieving milestones. These should be positive reinforcements like a movie night or a small treat, not counterproductive to your goal.

7. Be Flexible

Life happens, and sometimes you might slip. Don’t view this as a failure but as a part of the journey. Adjust your plan if necessary without giving up on the overall goal.

8. Understand Your Motivations

Keep reminding yourself why you set this resolution. Whether it’s for health, happiness, or personal growth, recalling your “why” can reignite your drive.

9. Learn from Setbacks

Instead of getting discouraged by setbacks, analyze what led to them and how you can avoid similar situations in the future.

10. Positive Reinforcement

Use positive affirmations or motivational quotes. Sometimes, a little self-talk can go a long way in keeping you on track.

11. Review and Adjust

Periodically review your progress. If something isn’t working, adjust your strategy rather than abandoning the resolution.

Remember, the key is consistency over perfection. Every day you stick to your resolution, even in small ways, counts towards building a new habit or achieving your goal. If you find yourself struggling, revisit your plan, and don’t hesitate to seek support from others. Happy New Year, and here’s to achieving your 2025 resolutions!

Shadows of Resilience

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In the quiet of the morning, when light begins to breach,
There lies a silent warrior, with strength you cannot teach.
Multiple Sclerosis, a name whispered with fear,
Yet within its shadow, courage blooms, oh so clear.

Each day is a canvas, painted with strokes of pain,
But also with moments of joy, a reminder that we gain.
The body, once a temple, now a puzzle to solve,
With every piece that shifts, we learn to resolve.

The nerves, like pathways, sometimes lost, sometimes found,
Guide us through a maze, where silence is profound.
Each step might falter, each hand might shake,
But the spirit within, oh how it does not break.

Through blurred visions and tremors, through numbness and ache,
We find new ways to dance, new paths to take.
With every MS flare, a lesson is taught,
Life’s beauty is not in the battles that we’ve fought,

But in the moments of stillness, in love and in laughter,
In the bonds we create going through life’s disaster.
We adapt, we adjust, we learn to embrace,
The life that MS gives with a unique kind of grace.

So here’s to the warriors, with scars deep and wide,
To those who see MS not just as a tide,
But as part of the journey, a chapter to pen,
With resilience and hope, again and again.

___________________

I also want to share this post of my favorite poem for this Christmas season.
I hope you enjoy it.

A Multiple Sclerosis Night Before Christmas

’Twas the night before Christmas, when all through my body,
Not a nerve was behaving, making me move rather shoddy.
My daily activities were chosen with care,
In hopes that each one could be done from a chair.

Each word that I spoke seemed to come out all wrong,
So much to be finished, I had to stay strong.
And John in the kitchen, and Missy making frappe,
Everyone busy working, no time for a nap.

When somewhere outside there arose such a clatter,
I peeked through the window, to see what was the matter.
I tried to move fast, to get to the door,
But I didn’t quite make it, and wound up on the floor.

As I lay on the rug, making sure nothing broke
Through tears I could see it, even gave it a poke.
Yes, what to my wondering eyes should appear,
But the cane that I had lost, earlier this year.

Then the front door cracked open, and before me he stood,
I immediately knew help had arrived which was good.
And more rapid than eagles, his phrases they came,
As he whistled and shouted, and called them by name.

“Now hang on, now slow down, now take more life pauses,
With stressful, and chaos, and tearful day causes.
To the end of the checklist, to the end of the hall,
Now dash away! Dash away! Dash away all!”

And then I could see, as I wiped away tears,
Why, his words and his wisdom had settled my fears.
As I sat on the floor, too weak to even move
He knelt down beside me, and said I have nothing to prove.

He looked a bit weary, as a glance we exchanged,
And he said that my focus is what needs to be changed.
What’s important is family and those who are nearby.
(On that last one he spoke with a twinkly eye.)

Your weakness…it’s real. Your limits…real too.
MS has this way of making even brilliant days blue.
He smiled as he spoke, and I knew he was right.
No more pity party moments or MS fist fights.

He spoke not a word more as he helped me to stand.
I found myself smiling as I reached for his hand.
I sat on the couch as he gave me a nod,
He helped me to see that my thinking was flawed.

Then he sprang to his sleigh, and to his team gave a whistle,
And away they all flew like the down of a thistle.
But I heard him exclaim, “You’re doing great, don’t forget,
To pause more and smile, you have nothing to fret.”

Here’s how to explain multiple sclerosis

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Multiple sclerosis, or MS for short, is a condition that affects the brain and the spinal cord, which are like the control centers for your body. Imagine your brain and spinal cord are like a busy highway with lots of wires (called nerves) that send messages to different parts of your body, telling them what to do.

In MS, something goes wrong with the protective covering of these wires, kind of like if the rubber on the outside of a wire got damaged. This covering is called myelin, and it helps the messages travel fast and smoothly. When it gets damaged, the messages can get mixed up or slowed down.

This can make someone feel different things, like:

  • Tingling or numbness in their hands or feet, like when your foot falls asleep.
  • Feeling very tired even after resting.
  • Seeing things a bit blurry or feeling dizzy.
  • Muscles might not work as smoothly, making it hard to walk or hold things.

But here’s the important part: people with MS are still the same people they were before. They might just need to take a little more time or use different ways to do things. There are lots of treatments and ways to help manage MS, like special medicines or exercises, to make sure they can keep doing the things they love.

Think of it like this: everyone’s body is like a unique puzzle, and sometimes, some pieces need a bit more care. People with MS are just solving their puzzle in a special way, and they can still play, learn, and have fun, just maybe a bit differently.

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.

GoFundMe Support for Positive Living with MS

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Donate now
at GoFundMe

I am Penelope Conway, the founder and writer of Positive Living with MS and I am raising money to cover the yearly costs for my website at GoFundMe.

I was diagnosed with multiple sclerosis in 2013 and went about looking for information about MS, the drugs used to help, and healthcare in general. Some of the things I learned were great, some not so much, but all of it beneficial.

One thing that truly annoyed me was when I would visit support groups at that time I always left feeling worse than when I had arrived. Most groups were just woe-is-me sessions and left me with an icky heaviness inside. So my remedy was to never go back to them.

Can’t people talk about MS and still laugh and enjoy themselves without all the woe-is-me attitudes? I found few resources for positive encouragement at that time. A place to laugh, to cry, to share, to just feel normal in the midst of a life of chaos. That’s when I decided to start something myself, thus the birth of Positive Living with MS.

I don’t make any money posting things online I just gain great new connections with people all around the world. One of my most popular posts is MS Facts. Beware… there’s humor in there to talk about all the symptoms we deal with. My video is also a favorite which I plan to do more of this coming year.

I try to post on my blog once a week to talk about my own experiences with MS, and post daily on social media to facebook and X. I’m glad to be able to share my journey with everyone.

I use whatever reach I have to talk about multiple sclerosis: the good, the bad and the ugly. Some with humor, some with tears, but all with a matter-of-fact straight talk. I don’t sugar coat things to make others feel comfortable about the topic I’m discussing. I just tell it like it is from my perspective.

I no longer work due to the progression of MS in my body. I have trouble cognitively as well as with uncontrollable tremors and weakness.

I only have my social security benefits to cover my living costs and squeeze out all I can to pay for the website. Thank you in advance for your support.

Donate now
at GoFundMe

I’m a nobody

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I’m a nobody. I’m just a gal with a laptop, a blog, an X account and a Facebook account. Nothing special.

I was diagnosed with multiple sclerosis in 2013 and went about looking for information about MS, the drugs used to help, and healthcare in general. Some of the things I learned were great, some not so much, but all of it beneficial.

One thing that truly annoyed me was when I would visit support groups at that time I always left feeling worse than when I had arrived. Most groups were just woe-is-me sessions and left me with an icky heaviness inside. So my remedy was to never go back to them.

Can’t people talk about MS and still laugh and enjoy themselves without all the woe-is-me attitudes? I found few resources for positive encouragement at that time. A place to laugh, to cry, to share, to just feel normal in the midst of a life of chaos. That’s when I decided to start something myself, thus the birth of Positive Living with MS. I don’t make any money posting things online I just gain great new connections with people all around the world and learn a lot of cool things from them.

In addition to that…

I will use whatever reach I have to talk about multiple sclerosis: the good, the bad and the ugly. Some with humor, some with tears, but all with a matter-of-fact straight talk. I don’t sugar coat things to make others feel comfortable about the topic I’m discussing. I just tell it like it is from my perspective. If that’s not something you like, then I hope you find some other blog or page that helps you out better than mine. No feelings hurt here.

I love making my humorous meme’s and sharing my daily nonsense posts on social media. Some are received well, some with groans and others with huh? moments. But at least they get people talking and thinking. And on my blog I try to post once a week to talk about my own experiences with MS. I’m glad to be able to share my journey with you. One of my favorite posts is MS Facts. Beware… there’s humor in there to talk about all the symptoms we deal with.

If you want to help me pay the bill to cover my hosting and blog costs you can donate online here:

DONATE HERE >

Any financial help is always a welcomed blessing for me as I no longer work due to the progression of MS in my body. I have trouble cognitively as well as with uncontrollable tremors and weakness.

I only have my social security benefits to cover my living costs and squeeze out all I can to pay for the website. I used to be a web developer and graphic designer so my skills came in handy to build the site and keep it running.

Each year around this time I let everyone know that in a few months the bill will be due. Any amount given will be used to cover the costs. This year the total is $600. The price went up about $50 from last year, but I’m determine to raise enough to cover all the costs with your help. Thank you in advance for your support. And happy thanksgiving to you as well.

———-

I’m Nobody! Who are you?
Are you – Nobody – too?
Then there’s a pair of us!
Don’t tell! they’d advertise – you know!

How dreary – to be – Somebody!
How public – like a Frog –
To tell one’s name – the livelong June –
To an admiring Bog!
– Emily Dickinson

 

There’s a flurry of weirdness going on in my brain

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When people try to rationalize or downplay my fatigue, it can hurt. Many times it seems like the more I try to explain how tired my tired is, the more they try to fit it into their little perception box. Understandably so, they aren’t the ones living with it, but sometimes I just wish I could give them a taste of what my fatigue actually feels like. Maybe then they would get it.

I spent my night with a random flurry of weirdness going on in my brain. My thoughts had no reason and made no sense. I have an overactive brain that just won’t shut up especially when night comes. It just feels so uncomfortable having a torrent of random weird thoughts and questions hitting me every time I try to sleep. I have realized the questions are so odd that most of them are unsolvable.

To go with my busy brain, my body is filled with pain, dizziness, breathing difficulties, tossing and turning, and muscle spasms all disrupting my comfort. A night of sleep… I wish!

But did any of my night time questions or thoughts come to fruition? No. When this happens I pick up a notebook and pen to write everything down. I can guarantee you that when I read them later I’m always thinking omg, these thoughts are so irrational. What the heck is that all about. Then I just let it go. I don’t need any stressful thoughts to complicate my already complicated life.

And because I’m so tired even after a night in bed, the thought of having to get myself dressed and looking presentable in the morning wears me out. If it’s not messy hair, pajama pants and t-shirt doable, it’s too much work.

I appreciate when a friend asks me to do something, but then is ok if I end up declining their invite because my body is simply too exhausted to function, even if it ends up being a last minute change. No one should ever have to spend time defending how they feel and why.

The world is buzzing by at hyper speeds and it tries its best to force me to keep up with the pace it sets, but MS has given me a slower pace that requires pitstops and multiple times of rest. Most of the buzzing about that the world wants me to do isn’t really important anyway.

I choose to hold onto the things that really matter in life like great friends, savory coffee and extra time to stay in bed. My bed is my friend and keeps me company even in the middles of the day when I need fluffy pillows and moments of quiet. I like friends like that.

Why Does Your Brain Ask Weird Questions When You Can’t Sleep?

My body has limitations that aren’t negotiable

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Stating my reality is not an excuse. When I tell you I can’t do something or I’m in pain, it’s not an excuse. It’s not a matter of not being positive enough or not trying hard enough. It’s my reality. It’s the truth.

It’s important to understand that being realistic does NOT mean giving up on your dreams. If there is something you really passionately want to do, but it would be challenging, you still may be able to do it if you plan and prepare appropriately.

Consider each activity more by how much you want to do it, or what you are willing to lose or miss out on if you do it, rather than trying to do everything you used to do. You know your body’s limits, and what is or isn’t worth the fight.

Be conservative in your planning at first so you can learn what your limitations and capabilities really are. Be aware that they can change often but you do have every right to push your limits and try to do the things that are important to you. The key part is to figure out what that looks like for you. Sometimes what you think will be super easy can actually be some of the most difficult things you do.

I have gone from being the person who organizes events to someone who is unlikely to have the cognitive space to complete the plans and worse, may pull out at the last minute or even won’t be able to join in on the celebration. Sometimes I am not even strong enough to take a shower in order to make myself presentable. I typically manage a quick text, before sinking back into exhaustion. Holiday times are the worst experiences for me.

An observation I have made is that some of my friends and family have taken this personally and assume that my change in behavior is a reflection of my feelings for them, rather than a symptom of MS which can change from day to day.

I can be so quiet about my struggle that people around me can forget they I’m hurting. This doesn’t mean I’m not having difficulties, it simply means I don’t want to bother them and keep saying the same thing over and over again like a broken record. I just wish my struggle could be better understood by those around me and that my worth wasn’t defined by what I can or can’t do.

This kind of disconnect can cause loneliness to set in which is tough to get through. The magic of human connection, just being seen and heard through the MS struggle, can be a great relief to the loneliness. A real conversation with someone who has taken time to ask and then genuinely listen can be worth more than all the plans and parties combined.

Stay strong for who you are — a person deserving of love. You have so much to offer the world just by being your authentic self. Don’t let self-doubt hold you back from living a meaningful life and embracing moments of joy and connection with others.

I want you to know that you are not a burden. Don’t let those negative thoughts define you. Your challenges or limitations do not make you any less worthy or valuable. There are people who see your strength and resilience in the face of difficulties and are encouraged by it. Focus on surrounding yourself with people who appreciate you for who you are, imperfections and all. Be the reason they feel less like a burden and more like a blessing.

I want you to know there is light ahead, even in your darkest moments. You can get through this. Stay strong and keep your head held high. Happier days are coming!