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“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.

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.

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?

Something bizarre happened to me

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Sometimes bizarre things happen with multiple sclerosis just because it exists. After all, we live with a strange, unpredictable disease that seems to have a mind of its own. At times I do things so strange that blaming it on MS isn’t even fair. Out of everything that has happened I blame my right hand for it all. My right hand is more of a paperweight than something of use anyway. Between tremors and weakness, it’s useless.

Some of the really strange things that happen need to be discussed more often so more people are aware of the challenges we face.  The strangest symptoms I’ve dealt with include:

  • Feeling as if an internal earthquake is taking place inside my body.
  • Experiencing ringing in my ears that sometimes is louder than a crowd at a ball game.
  • Feeling as if water is dripping on me when I’m no where near a faucet.
  • The unrelenting crushing feeling of the MS hug which is more like a tight girdle wrapped around the rib cage or a boa constrictor that won’t let go.
  • Feeling as if food is stuck in my throat when I haven’t eaten anything.
  • Involuntary movements of my body like me accidentally kicking the doctor.
  • Abnormal sensations on my skin such as burning, pins and needles, and even itching that nothing seems to be able to alleviate.
  • Feeling an electrical shock sensation through my arms and legs when I tilt my neck downward.
  • Feelings of dizziness and being off-balance which accompanies nausea.
  • Experiencing emotional incontinence which brings on uncontrollable laughter or tears.
  • Dealing with 3-D illusions like when an object is moving straight towards me but it appears to be swerving and shifting in its path.

I have also noticed a strange phenomenon since having MS. I don’t have a clue if it’s actually related to MS in any way as I’ve never heard it talked about, but I thought I would mention it so others who are dealing with the same things don’t think they are going crazy.

When I get something as simple as a pimple on my face (it’s not just for teenagers, you know), it will take a few months to fully heal instead of days as in times past. I’ve noticed the same thing happens with cuts too. I cut my finger in the kitchen and after a month it has healed aside for a slightly puffiness. I’m just glad my hand is numb and I can’t feel any pain that is going on inside. It’s healing at its own slow pace. Bizarrely slow, I have to say.

It could be due to some of the medications I take. I take things for muscle spasms, pain, dizziness, help with sleeping, and temors. A daily cocktail along with a slew of supplements and vitamins. It’s crazy because before MS I didn’t even take aspirin or cold medicine, now I have a rainbow collection of pills that would put a package of Skittles to shame.

When I was first diagnosed with MS I was taking a med called Rebif. I had to give myself inter-muscular shots 3 times a week, similar to those taking Copaxone. Those shots would bruise me so bad that over time I looked like I was being abused. I would have bruises on my thighs, arms and belly and they would take forever to heal. But the med would end up making me feel worse than MS actually did. I was medicating myself for the side effects of the medication. Such a vicious cycle that I’m glad ended when I stopped taking it. I would rather let MS progress naturally than feel miserable trying to medicate for a hopeful slower progression of MS.

Keeping a healthy diet helps to manage some issues, but it won’t rid the body of everything MS. I’m truly overjoyed for those that are able to fully manage MS by the things they eat and the supplements they take, but it’s important for people to understand that not everybody has such great results. Each of us is unique with our own cellular makeup and our own responses to diet and medications.

If you face slow wound healing, know that you aren’t alone. I’m sitting here with a puffy finger and a pimple on my chin to prove it happens.

It’s necessary for a person on a journey with MS to be able to recognize why coping with their illness is difficult. Knowing how crazy MS can be can help ease the burden, even if only for a little while. You got this.

Once diagnosed with MS, you find out who your real friends are

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Life was good before multiple sclerosis. I had great friends. We would spend time together on the weekends going out to eat or bowling, and in the summer we would always plan hiking trips through the mountains. When MS became a part of the picture, those nights out and trips dwindled. It got to where I wasn’t even being invited to dinner anymore, they would just go without me. It made me downright mad to be excluded like that. I wanted to scream at them saying, “I have MS, I didn’t die.”

Amazingly, you discover who your real friends are once a challenge arises. They will either stand by you and hold you up or they will walk away dropping you like a hot potato. If they choose to walk away, let them. You don’t need anyone pulling you down. MS is doing a good enough job of that already.

For those friends wanting to understand a little more about how life changes for a person with MS, I’ve listed a few things here. Maybe they will help you to understand MS and help you to be a better friend in the process.

1. Sleep is important to us.

We need to go to bed early. When I say need, I mean NEED, and when I say early, I mean EARLY! Our bodies wear out faster because they are working harder to do just about everything. The simple act of walking across a room exerts twice the energy of a healthy person doing the same thing, if not more. We have to think to walk. It doesn’t come naturally like it does for you. Every step includes a thought process about how to pick up the foot and where to put it back down. Now, add to that all the other things you do in a day. Many times we will be in the bed before the sun goes down, which means we may not be able to have a night out with the gang or stay up to watch a late night movie on the couch. When we do sleep, the time is sporadic which makes us even more exhausted the next day. Sleeping through the night without bathroom breaks and being awaked by pain is a rarity. So, if we say we’re tired, we are “I haven’t slept in days and every muscle, bone and cell in my body aches” tired.

2. Schedules are planned around treatment and sleep.

No longer are we able to plan ahead for a special event. Our meds and sleep patterns changed that the moment MS became a part of our life. If we are out enjoying the night and have to leave early, don’t get mad or think we are being unsocial for being the first person to slip out unnoticed. When our bodies are screaming at us in pain, and our exhaustion has hit an all time high, we would rather be at home in the comfort of our PJs so we can hibernate on our own couch. This way, if we have a moment when things get too intense and we shed a tear or two, we don’t have to explain what’s wrong for the hundredth time. Just know that if we ever say “no” or have to cancel last minute plans, it’s not because we don’t want to be a part of what’s going on or because we are mad at you. Our bodies just won’t let us join in.

3. “Just come over and sit” is not as easy as it sounds.

For one, we have to get ourselves dressed and make ourselves presentable which exerts energy. Then we have to drive through traffic to get to your house which can be dangerous, especially if we have trouble with vision, numbness in our legs, dizziness or fatigue. So, although coming and just sitting at your house sounds simple, it’s not. It becomes even more difficult when we have to leave and drive back home, because by that time we are so tired that driving can be scary and unsafe. It would be so much easier if you were to come to us. And not a loud party kind of come over either. There is a time and place for that, but most of the time we just want to know you care. Having a cup of coffee or tea for an hour or bringing lunch over would be welcomed and help brighten our day.

4. Simple things suddenly become difficult.

Laundry, cleaning, cooking, washing the car, vacuuming, making the bed, going to the store: they all sounds like simple things, right? But they’re not. All of a sudden we find ourselves struggling just to make the bed in the morning. What normally would take 10 minutes becomes 45 minutes. Our energy gets used up fast and our muscles weaken quick. All those things normal people do, we struggle with. We look around the house and want to cry because we have had to neglect things we normally would take care of. You know what would be the greatest thing of all? For you to volunteer to come and help us tackle the laundry or the scrubbing of the toilet.

5. We get tired of explaining the same thing over and over.

We understand that you don’t get it and that much of our pain you can’t see. We realize you can forget from time to time that we are hurting and suffering on the inside. But please, as a friend who wants to be a part of our lives, take the time to read up on MS so you can be informed. Be our biggest supporter: the person that stands up for us and fights for us when others point and stare or are saying stupid things and being rude. Hold our hand through the bad days and help us find our smile when we lose it.

6. Don’t judge us for our choice of treatment.

We are the ones living with MS and, surprisingly enough, we have researched more in depth about MS than most people because again, we are the ones living with it. We would like nothing more than to one day wake up and hear that MS is cured. Until then, we have decisions to make about a treatment plan. Those decisions are ours to make, not yours. Please don’t judge our decisions. Treatments are a trial and error kind of thing. They won’t cure us. They just delay the progression. Let us try what we feel is right for us, and if it doesn’t work, help us to make the next big decision for treatment. Leave the judgements and finger pointing elsewhere. We don’t need condemnation or criticism. We need support and care.

When it comes to friendships, we need them, we want them, we long for them, but we won’t be able to be the friend you have known in the past and we need you to be okay with that. MS has caused our lives to change. We would love it if you would help us through that change by changing with us. We know it’s not easy. Boy, do we know it’s not easy. But know that living with MS isn’t easy either.

True friends are a rare thing for the chronically ill. It takes guts to stand with us. Thanks for having the guts to stay.

I have lots of “almosts” in my MS life

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Lucy and Linus were talking to their coach, Charlie Brown, at home plate. Kicking the dirt in disgust, Charlie Brown said, “Our team is no good. We have lost every game. There is nothing good about our team!”

“But,” protested Lucy, “Schroder almost hit a home run. And we almost won a couple of games. Once we almost made a double play. Don’t forget that you almost made it to first base before the ball, once.”

“If it’s any consolation, Charlie Brown,” interrupted Linus, “we did lead the league in almosts.”

“Almosts” are part of everyone’s life but living with multiple sclerosis our almosts are a bit different. Some almosts work to our advantage and are even celebrated.

For example, there are times when we almost slip getting out of the shower. Yeah! Or, we almost have an accident while driving our wheelchair… oops. Or, we almost choke while swallowing food, air or saliva… yikes. Or, we almost fall going up the stairs… yes, it can happen.

But sadly I have actually had every one of them happen to me and they can be really scary to deal with. It takes a lot of strength to hang in there when everything around you is going wrong and destroying your hopes and dreams.

Then there are the “might have been” occasions like when we almost walk across a parking lot without needing help but fall instead. Or other might have been occasions when we almost are healed by taking supplements and eating a special healthy diet. You know, the infamous unknown cures that heal every illness on the planet. According to those hacks we should be healed already.

Those things are like almost but not quite occurrences. According to Websters Dictionary, almost means “very near but not quite”.

So, the way I see it the “almosts” and “might have beens” are the same as it never really happened at all. I have a lot of almosts and might have beens in my life with MS but I don’t let that stop me from living life on my own terms. Not according to what other people think it should be but how I choose to live it. How about you?