Multiple sclerosis tried to break me

/1 Comment/in /by

Have you ever gone to the beach and taken time to truly examine the seashells that wash onto the beach? Some people are avid shell hunters and spend countless hours searching for the perfect ones. They are looking for beautiful coloration and formation. They don’t even contemplate collecting the broken ones, after all who wants a broken shell sitting on their coffee table?

But then you have people like me who enjoy going to the beach and stumbling across incredible little treasures along the shore. I pick up each shell that stands out to me as the waters ebb and flow over the sand. Some of the shells at first glance look like a perfect creation, yet once I bend down to pick them up, I find them to be a broken treasure instead. Those are my favorite kind and the ones I place in my pocket to take home.

I have a bowl full of broken shells that I have proudly displayed for anyone who comes over to see. Some of those shells are beautiful pieces that could be made into an exquisite piece of jewelry, but most of them are fragile and broken from years of life in rough waters. Some have lost their vibrant color, others have lost their outward beauty, and still others have allowed deposits from the ocean environment to leave a lasting mark on their surface. Each one is broken and yet each one is amazingly beautiful.

Just like those shells, some say that I’m broken. They look at me – at my past mistakes, burdens, heartaches, and even at the fact that I’m living with multiple sclerosis – and all they see are my cracks, scars and the shattered fragments of my life. But the most amazing thing happens when you hold me up to the light. Not only will you see my imperfections, but you will also see what makes me beautiful.

I admit that sometimes it takes everything I’ve got to simply get out of bed in the morning. Many times I don’t want to get up. I wake up before dawn and all the “stuff” I have to do, along with what I haven’t done and the problems that await me, comes crashing down and all I want to do is stay in bed and hide under the covers.

I take a deep breath and gather the strength I need and roll out of bed, sometimes even crawl, to start my day. It’s because of being broken that I am who I am…a battle weary warrior who has overcome much with unimaginable strength, determination and a refusal to give up.

You have cracks, scars and broken areas of your life too. The ups and downs you have experienced are real. Just because you are imperfect and living with a chronic disease doesn’t mean you are worthless. Each one of those things makes you uniquely you. You are not broken…you are a beautiful example of how someone can push through all the junk life throws their way and rise above it shinning brightly. You are not broken…you are beautifully YOU… scars, imperfections, wounds, bruises, cracks, and all.

I lost my brain

/7 Comments/in /by

Today I was jolted awake with the thought, “Oh, no…what day is it?” It was a sudden thought. One that I didn’t have time to fully process. My brain just couldn’t seem to work things out on its own. It was as if someone had poured sticky, gooey, hot molasses all over it. At least molasses would have been a valid excuse for the sluggishness I’m experiencing. Having an MS brain isn’t as easily explained.

On days like today when my brain just doesn’t seem to be able to process one single thought properly, I find myself working extra hard to make up for it. I pause while I’m talking to help as I’m searching for the right words to say, I take notes to help keep me on track, I even defer to others so they can finish what I’m trying to say. It’s amazing how extremely exhausting all that is. Thinking to think is hard work.

This morning, I can’t even do that much. This morning is an “I lost my brain” kind of morning.

I can only imagine the person who accidentally stumbles across this weird looking blob called my brain lying somewhere between the mailbox and the bathroom. It’s this strange looking creature full of scars and holes. None of which helps me out. They actually hinder everything I do.

Will they even know what they have found? I hope my brain returns soon because as of right now…all I can do is simply roll over and go back to bed.

I think my brain ran away because it was having to work too many hours and decided it needed a vacation. I wish it would have let me in on its plan though because I would have loved a vacation right about now. Anyone up for a trip to the caribbean?

Computer failures are a lot like multiple sclerosis

/4 Comments/in /by

Have you ever had one of those days where everything seemed to start off going great but then things shifted and everything went wrong? Where the unexpected happened more than once and you hadn’t even gotten out of bed yet? Those days can be frustrating, irritating and make you want to scream. I’ve been there more times than I can count.

That’s kind of how I feel when my laptop starts acting up. It doesn’t happen often, but I have had times when my computer has failed me. I’m a fix-it-myself kind of person. A techie geek who thrives on having a well running computer. I will visit online forums reading from people who know more than me in order to resolve a problem.

One time I had a person reply to me on a message board, “Since you’re getting that error, you need to do this and this.” So, I did this and this, but it didn’t work. Then someone said, “No, you need to click that and change this.” So I clicked that and changed this but that didn’t work either.

I attempted suggestion after suggestion with still nothing fixing my problem so I ended up doing what we all do, I went to the experts. When I brought my computer in to get it checked out even their diagnostic programs were unable to pinpoint the problem. Their answer, “We need to replace the logic board.” (That’s just a fancy word for the board inside the computer that handles all the communication processes.)

Computer failures are a lot like multiple sclerosis. You may have difficulty with spasticity in your legs and someone will say, “You need to take potassium. That’s what I do and it worked great.” You buy some to try and you become disappointed because it doesn’t help for you.

Then someone says, “No, you need to change how you do this and do that instead.” So you do what they suggest and still no change. Then someone else comes along and says, “No, no, no, they are all wrong. You need to eat this and take this other thing.” So you do it…and again no change.

So many solutions for just one problem, yet because we are all unique and we all have a different internal wiring system, what works for one person may not work for another.

The biggest thing I would like for people to understand, both those who live with MS and those who don’t, is that every person’s internal “logic board” may connect all the same parts together, but somewhere deep inside where no one can see, there’s a malfunction in those of us living with MS that has disrupted the communication between our brain and our body.

Sometimes a simple tweak or adjustment here or there does the trick and we are up and at em’ going strong once again. But sometimes the “logic board” has failed to the point that no one, not even the experts, can pinpoint where the failure is taking place.

It would be amazing if we could simply replace our body’s internal “logic board,” but we only have one so we have to take care of the one we have as best we can. My response to the barrage of fixes and solutions people push my way…”Thank you for your suggestions, but I know my body and am doing what I believe is right for me.”

Everyone wants MS to be cured, especially those of us living with it day in and day out. How about instead of pushing the latest craze or fix, we chose to love each other and simply be there to support a persons decision in how they believe their MS should be managed. Giving someone a hug or holding their hand is so much more comforting than pushing internet solutions and unfounded cures or fixes at them.

When everything around you seems to be falling apart, know that you are not crazy or alone. There are others feeling the same way. Do what you believe is right for you to do and don’t get discouraged by all the nay sayers, experts and trendies. Always remember this one thing: Even though your body has failed you, you are not a failure. You are an amazing, strong and resilient MS warrior. You got this!

Multiple Sclerosis makes simple things, complicated

/3 Comments/in /by

There are times I wish everyone would just go away and leave me alone so I can clear my head and distance myself from all the drama, arguments and chaos in the world; to find such a place where I can cry as much as I need and let out a scream or two from time to time—even if only for 5 minutes. Now that would be amazing.

It’s not always easy finding that perfect spot. The place where no one else is hanging around to judge you for simply being you. For me, that place just so happens to be in my shower. Somehow I’m able to have my own little pity party in the solitude of the bathroom away from the world as water gushes down my face. It just seems easier to think and cry in the shower. I have washed many tears down the drain in my lifetime.

Lately though, showers haven’t been so freeing. This may sound weird to some of you, but much of the skin on my face, arms and legs has become so hypersensitive that even water hitting me from the shower head hurts. And when I say hurts…I mean HURTS!

I’ve been pointing the shower head to the side wall and filling a large cup with water to rinse the shampoo out of my hair. It makes bathing a bit more complicated, but if I don’t want to smell like a skunk, I change and adapt.

It seems multiple sclerosis is good at making simple things, complicated. Who would have guessed that clipping your fingernails could become a near impossibility to accomplish by yourself? Or that things like signing a check, picking up the mail, vacuuming, getting dressed, or even brushing your teeth require more time, energy and help than ever before?

I never really thought about doing those things in the past. I just did them without realizing how much I was truly taking for granted. But today, many things have become a challenge for me to complete. It’s as if each day, as I pull back the covers to get out of bed, I start my ascend to the top of Mount Everest. I don’t always make it to the top as the day comes to a close, but I press on anyway.

Multiple sclerosis is the disease that keeps on giving and taking away. But regardless, I refuse to let it limit or define me.

REMEMBER: You have this terrible, pesky disease called multiple sclerosis and it’s trying to take over your body, but you are not MS. You are an amazingly courageous person that can still love, dream, laugh, and hope for a better tomorrow.

Understanding my journey with Multiple Sclerosis

/3 Comments/in /by

I wear shoes most days. Although I still prefer my barefoot moments, but protecting my feet is way more important these days especially since I don’t have much feeling in them anymore.

Today, my everyday shoes are nice and clean, but that’s only because I don’t actually walk in them anymore. I just wear them as I wheel myself about in my powerchair. They keep me from stubbing my toes or banging my feet into the walls which happens quite often. I actually broke my big toe running into my work station in the garage where I keep all my tools. My hand was tired steering my chair and it seemed to have a mind of its own. Then… B A M.

When I was walking, my everyday shoes were a bit worn and scuffed. I had been many places with them on my feet. If they could talk they would tell of traveling around the world, going to the theatre, spending time with friends, out shopping and visiting beautiful landmarks. I felt unstoppable and on top of the world.

They would also tell of the day I went to the doctors office for tests because I was having a hard time walking, seeing and feeling parts of my face and body. That day was a day of tears, but not the good kind of tears. It was a day I wish I didn’t have to go through, but my shoes were with me and walked me down those sterile hallways at the hospital. They saw my pain and felt my discomfort as a diagnosis of multiple sclerosis was made. If only they could talk.

No one has ever walked in my shoes. I doubt they could fit in them even if they tried. I think my shoes are a little like Cinderella’s… you know, how out of everybody in the kingdom, no one had a foot her size or could fit into her lost shoe. It’s amazing how not even one person could wear her shoe. It was unique to her.

I’ve heard it said that you can’t know someone until you’ve walked a mile in their shoes. People like to throw out opinions of how I should live my life, but in actuality, they don’t know my journey. They haven’t lived my story. When you’ve lived my life only then can you judge me.

Don’t let someone judge your pain or your response to the difficulties in life while standing in their own shoes, not once putting them aside to walk in yours first. They can’t know your pain, sorrow, happiness, joy, depression, heartache, doubts, fears, and laughter. They can’ know your life if they aren’t walking in your shoes. Some people can’t handle the truth let alone tell it. Don’t judge me until you take a hard look in a mirror at yourself. Hopefully it doesn’t break. (Grin)

And besides I gave most of my shoes away when I discovered I could no longer wear them. My high heels… gone. Flip-flops… gone. Even my favorite tennis shoes… gone. All because I needed an AFO brace to help me walk on my own. That journey alone was heartbreaking.

We each have our own journey and our own shoes to wear. When you put your shoes on today, remember how far you’ve come and the miles you’ve been. Each scuff mark is a story of trying. Each smudge is a part of not giving up. Your journey isn’t over… it’s only just begun. So, let’s go forward Warriors.

“No” is not a bad word

/2 Comments/in /by

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

/5 Comments/in /by

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

/1 Comment/in /by

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!