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.

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.

Finding strength in tough times

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Sometimes life comes along and dumps a big ole stinkin’ pile of poop right on top of your head. It doesn’t ring the doorbell or schedule an appointment either. No, it comes around unannounced and without warning. I would love the opportunity to throw it back or pile it up at its front door…on fire, but somehow I can’t seem to find a shovel or a wheelbarrow when I need one.

But you know, I have learned to appreciate those piles of stench when they come. Sounds crazy, I know, but some of the most amazing flowers I have ever seen have grown out of the most terrible of circumstances. I saw a beautiful, radiant flower growing in the middle of a smelly old compost pile once. There’s something powerful and amazing about a flower growing in the midst of tragedy. Imagine all it had to go through just to bloom, to grow. It had to push through a whole lot of crap, suffer more than most, yet somehow found the strength to rise up and bloom where it was planted…in the middle of a mess.

I’m sure it felt suffocated, unappreciated, unlovable, unimportant, and even out of place, especially seeing all the other flowers enjoying the comforts of the flower bed. Yet there it was stuck in a pile of poop. That would make any flower contemplate giving up.

Over the years, I have noticed that life is full of piles of poop. As we walk this journey, sometimes we are going to step in some pretty big smelly piles of it too. Sometimes life is going to keep piling it up. Pile after pile, mess after mess, struggle after struggle. When that happens, our first reaction tends to include throwing our hands up with serious thoughts of quitting.

Maybe you’ve been pooped on by life and you’ve simply had more than you think you can handle. Maybe MS has been bothering you more lately than in times past. Maybe you don’t have anything left in you to hang on to and getting things done for yourself seems like  an impossibility.

Know that today you can choose to take a step towards making a difference in your own life! Get out of the house, listen to your favorite happy song, remind yourself of what you love and what makes you happy! You don’t want to miss the good that is around you by sitting in a stinkin’ pile of poop.

Even with all the difficulties and disappointments, I know you’re not a quitter. You are like that amazing, beautiful flower growing in the middle of a mess. That’s pretty incredible if you ask me. You may not be able to change your circumstances, but you can change your perspective and find beauty in the mess. It’s time to push through all the mess surrounding you, hold your head high and bloom where you are planted.

I’m not broken, a burden or an inconvenience

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In today’s world, we are constantly being made to believe that something is wrong with us because we have multiple sclerosis. Those of us using walking aids, wheelchairs and braces for some reason are seen as broken and a burden. We move much too slow, drop things way too easily and need help way too often with even the simplest of tasks for most people to bear. And those with MS who don’t need visible help…the bathroom issues, pain, emotional moments, and memory difficulties are viewed in the same way: as an inconvenience for others.

I can remember when I first started using a cane. I tried to hide it from people. I really did. I would wait until the last moment possible to get my cane in hand in order to walk across the parking lot of the grocery store. I would try to keep it as close to my right leg as possible thinking it would make it less noticeable. It didn’t, but I tried anyway.

The walker was much harder to hide. I felt like I was pushing around a truck with caution signs and flashing lights. “Look at me, here I come! Beep, beep, beep.”

The responses it invoked in people was not always comfortable to handle either. As soon as someone saw me with a walker, the questions began…too many questions, and ones that required exhausting explanations. I wasn’t ashamed of MS, I was simply tired of the constant “What’s wrong with you?” questions met with “I know what you need to do to make MS go away” responses.

Sometimes for me, the easiest response was lying and saying “It’s a football injury.” That was always met with a smile and a nod…even though I’m a girl. What? Sports injuries are more readily acceptable than a chronic illness?

Now that I use a wheelchair, it’s a bit harder to hide my walking difficulties but I’ve also gotten better at handling people’s stares, questions and comments. It still gets to me at times, but I’m okay with most people’s responses. I’ve come to understand that the negative and insensitive comments made by people simply show who they are as a person and has nothing to do with me.

One of the most important things I have learned is that multiple sclerosis has not left me broken. Cracked? Maybe…but I think I was cracked way before MS came along. If anything, it has opened my eyes to seeing the real me and to seeing how broken this world really is.

Yes, it takes me longer to do just about everything from checking the mail, to sweeping the floor, to getting out of bed. But even though I may not be fast at doing things, I can still get to where I’m going. It may take some creativity and some extra help, but I make it every time.

Ultimately, it would be wonderful to live in a world where disabilities took a back seat to who we are as a person. That day will probably never come, but regardless of what the world thinks, I want you to know that you are not broken or a burden.

You are a beautifully patched together work of art covered in scars yet filled with amazing resilience and strength. Your scars display an amazing roadmap of courage. You are not MS, a cane, a wheelchair, or even an emotional mess. You are incredibly you! You are important, needed, and wonderful just the way that you are…and don’t you ever forget it.


“Why Not You?

  • Today, many will awaken with a fresh sense of inspiration. Why not you?
  • Today, many will open their eyes to the beauty that surrounds them. Why not you?
  • Today, many will choose to leave the ghost of yesterday behind and seize the immeasurable power of today. Why not you?
  • Today, many will break through the barriers of the past by looking at the blessings of the present. Why not you?
  • Today, for many the burden of self doubt and insecurity will be lifted by the security and confidence of empowerment. Why not you?
  • Today, many will rise above their believed limitations and make contact with their powerful innate strength. Why not you?
  • Today, many will choose to live in such a manner that they will be a positive role model for their children. Why not you?
  • Today, many will choose to free themselves from the personal imprisonment of their bad habits. Why not you?
  • Today, many will choose to live free of conditions and rules governing their own happiness. Why not you?
  • Today, many will find abundance in simplicity. Why not you?
  • Today, many will be confronted by difficult moral choices and they will choose to do what is right instead of what is beneficial. Why not you?
  • Today, many will decide to no longer sit back with a victim mentality, but to take charge of their lives and make positive changes. Why not you?
  • Today, many will take the action necessary to make a difference. Why not you?
  • Today, many will make the commitment to be a better mother, father, son, daughter, student, teacher, worker, boss, brother, sister, & so much more. Why not you?

Today is a new day!

Many will seize this day.
Many will live it to the fullest.
Why not you?”

― Steve Maraboli

MS is a disease of change

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Have you ever needed to talk to someone yet you were scared stiff to do it because deep down you knew it was not going to go well? To prepare yourself, you planned out what you were going to say. You chose your words wisely and sounded so eloquent in your head. You even planned out their response. Everything seemed perfect.

When the time came, you sat down with them only to realize that things weren’t going as planned. They didn’t follow the script you laid out in your head. We’ve all had those moments. In most cases we can look back at those times and smile because, in the end, things worked out just not the way we thought they would.

Life has a way of doing that. It doesn’t go as planned no matter how hard we try to force it to. And sometimes we try really hard.

Before multiple sclerosis, I had my life all planned out. My career was set. My goals were laid out. I was going places and doing things. Then MS came along and changed everything around.

I think about it kind of like this…

There’s a comfort knowing that I can park my car in a certain spot every day; that if I open the top drawer in my bathroom cabinet I will find the toothpaste neatly tucked away; that when I go to the grocery store the tomatoes are to the right and the napkins are to the left.

But what would happen if I pulled into my driveway and couldn’t get into the garage because the garage door wouldn’t open; or I opened the drawer in the bathroom cabinet and the toothpaste exploded splattering all over my new dress; or if the grocery store decided to move everything around and change the entire floor plan?

What would happen? Frustrations would be high and schedules would get delayed. Now if those things were to happen all at once and then change every single day into the future, well that’s a life with MS and not something you ever get used to.

MS is a disease of change and that much unexpected change can be hard.

When things don’t happen the way you think they should, don’t let that ruin your day. When change is the only thing constant in your life, don’t allow frustration to rule the day.

MS has this way of switching things up on you without warning. Because of that, it’s important to sort through everything going on and choose to focus on the things that really matter in life.

Focus on family, friends, your faith, things that give you peace and happiness, and leave behind everything else that really, in the long run, doesn’t matter. Live in the moment. This way, when change comes (because we all know it will), you will be able to move right through it and keep going.

We are living with a forever disease

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We live in a messed up world in a messed up body with a messed up disease, so when things get messed up around us…why are we so surprised? Don’t let the messes mess up your day. One thing to keep in mind is that we are living with multiple sclerosis, a forever disease, as crazy as that may seem.

There is nothing as of yet to rid the body of MS. Yes, you can manage the symptoms and sometimes even make them appear as though they don’t even exist. But don’t kid yourself. You still have MS even when it’s hidden. Be mindful of your body and what it’s telling you. Only you can hear it. Sometimes it will be annoyingly screaming at you to pay attention. Please stop and listen.

Growing up in a family of seven, we had our fair share of messes. I loved baking and would enter contests from time to time. As a ten year old I could make a killer lemon cake. It won me a blue ribbon more than once.

I was taught to clean up as you go. I had fun as I gathered all my ingredients; measured out what I needed; sifted, mixed, cracked, whipped, poured, and baked. The entire time I was also cleaning up, putting away, rinsing and washing to keep from having too big of a mess. By time the cake was in the oven, I was ready to watch it rise.

Now my oldest brother, that was a different story. You let him loose in the kitchen and it would turn out looking like a tornado hit it. He had no concept of order, he just had fun. He could make some amazing oatmeal cookies, scrambled eggs and even sirloin steaks, you just didn’t want to go in the kitchen afterwards. It was messier than messy. It was what I called confused chaos. It would take him time, but the kitchen would eventual get cleaned up and looking just as amazing as his food tasted.

We both had messes to face, we just chose our own way of dealing with them. I would tackle things bit by bit as they came along and he would wait to attack them all at once. We both had fun, we both had messes, but in the end we both had something amazing.

It bothers me when people come along trying to dictate how to live with MS as if the mess we find ourselves living in has a one stop, one way fix. What makes people think they’re the experts at living with a chronic illness just because it works for some, never for all? If I choose to follow a certain diet, something different than you…am I wrong, or are you wrong? If I choose to not take meds and you choose to take something…am I wrong, or are you? If I chose to visit a doctor and you chose to stay home, who’s right and who’s wrong?

Each person is different with different bodily makeup, different cell structures, different DNA, different problems, really different everything. What works for one won’t necessarily work for another. To be honest, one drug may harm a person as well as help another.

You see, we each have our own lives, our own messes, our own chaos and our own fun. No one is right or wrong in how they go about living with MS. There are always things we could do better and new things to learn, but NEVER should we act as if we are the guru of all knowledge and wisdom regarding something as unknowable as MS and the human body, because we aren’t. It’s just that each of us deals with the mess in different ways.

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

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

The struggles dealing with multiple sclerosis

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I woke up yesterday morning to a storm blowing outside…rain, wind, thunder. Actually, it had been raining for days. Today the morning temperature has dropped making it a bit chilly out but humid… which is my enemy. It’s the kind of weather that makes me want to curl up in my favorite chair, put a good movie on the TV and veg with a cup of coffee and my soft cuddly blanket.

Interestingly enough, the harshness of the wind cleared up just as quickly as it had started. It’s still dreary out, but much calmer than before and today the sun should be out. Did I mention that the air is humid? Humidity and my body don’t go together very well. Neither does heat or cold. Cold stiffens me and heat weakens me.

I call the struggles we go through in our life with multiple sclerosis “storms.” Storms because although they have the potential to turn our lives upside down, send everything into chaos and create massive devastation, they never last forever. Every storm has an end, no matter how fierce or destructive it may be.

If you are in the middle of a storm right now, hang on. The wind may be blowing and the rains may be pouring down, you may be experiencing a volcanic eruption or even an earthquake that is breaking apart everything around you, but your storm will end. The winds will cease, the trembling will stop, the clouds will clear, and the sun will shine once again.

I know it’s hard to see any good when everything around you seems to be falling apart. It’s not easy to rest when you’re dealing with a chronic illness and everything that comes along with it. Most of the time, you feel like you are living in a perpetual season of storms, pains and heartbreaks. But in the middle of all the symptoms and the craziness, know that you are not alone.

I have an appointment to see my doctor today. It’s just a check up so I’m not expecting anything unusual. Next week I will see my urologist to make sure things are okay with my urostomy. I have already had an ultrasound so he will have the results to go over with me. Thankfully since having my bladder removed I’m doing much better than when I was dealing with a SPC (suprapubic catheter) to drain my bladder. My bladder issues are much more manageable and easy to handle by myself now. I have even thanked my doctor for it… which doesn’t happen often.

Today can be the best of times or the worst of times, but you get to choose hope over fear. Hang on to hope for a better day today than yesterday.

Hope is what gets you through the struggles and helps you rest when you’re weary. Hope is what wakes you up in the morning and pushes you through your day. Hope is what clears the cloudy skies allowing the sun to shine in the middle of a downpour. Hope is what lifts you up when you’re too weak to even move.

Even if you don’t see the good right now in what you are facing, hang on to hope! It’s there even if it’s hiding in the shadows. There’s a twinkle just over there… do you see it? That’s hope!

A life with multiple sclerosis isn’t easy

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I have never climbed Mount Everest but it seems like every day I scale its twin. Somehow this twin of a mountain is in front of me as soon as I open my eyes to start the day. As the morning begins I am faced with a new climb in my journey with multiple sclerosis, sometimes even before I pull back the covers.

One day I may be staring at a gigantic wall of rock that seems impossible to scale and the next day my path may be a gently sloping hill of grass. I never know what part of the climb I will be facing until it is there in front of me. If I had my choice, I would pick the gently sloping hills every time. They make it much easier when I fall down. Those rocks hurt.

But no matter what I am facing, the thing I keep reminding myself with each forward motion I take is to never give up…even if I am on unsteady, shifting rocks. A life with MS isn’t easy no matter what you are dealing with, but at the end of the day I lay my head down on my pillow knowing that I did the best I could. That’s what really matters anyway, doing your best.

Today I have to have blood tests done to make sure my white blood cell counts are good, then I have a load of laundry to finish and my kitchen needs to be cleaned up. All things I would much rather avoid, but they’re not going to get done without my help. I also have yard work to do which I want to wait for the early morning hours when the temperature is cool and my body is more manageable. That may have to wait for tomorrow. I just need to make sure I pause enough so I don’t get to weak and useless.

If you are facing an overwhelming pile of work that needs to get done before the end of the day or are weary from the difficulties life has handed you, take a moment to pause in your climb. When your emotions are going bonkers, the pain becomes too much, your blurred vision is limiting your view…pause. When nothing seems to be going right and your hope of a better tomorrow seems to be fading fast…pause.

It doesn’t have to be a long pause, just enough time to catch your breath. No matter what you may think, pausing doesn’t mean you are giving up. It actually helps to give you the strength needed to keep going. Pause, but don’t quit.

You really do have the strength within you to keep climbing, to keep going. I hope you pause long enough to find the added strength you need today. You’ve got this.

Vision problems and multiple sclerosis

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My eyesight has been giving me more and more trouble lately. When I wake up in the morning it takes me more time than usual to properly focus. I will prop myself up in bed and have to rub my eyes countless times just to see straight.

At that time of the day don’t expect me to be able to read a text message, email or anything else for that matter, without difficulties. If a text message is not responded to for more time than what was expected, don’t hold it against me. I will eventually get to it… by next year.

At the age of 12 I started wearing glasses and hated all the difficulties just trying to keep them clean or to not fog up in humid weather. Twenty years ago I got Lasik surgery to correct my vision. According to the Ophthalmologist, now my eyesight is 20/20. There’s a lesion in my brain that is causing me to have some blurred vision in my left eye but other than that, all is well there.

The problem for me is that the muscles in my eyes are weak and causing me to see a shadow beside each letter. It’s called double vision. It’s like a copy of the word is overlapping itself but slightly offset making a confusing mess. Even making the text display a larger scale helps to read clearer but doesn’t remedy the issue.

Just writing this post is cumbersome and takes more time than usual to complete. Of course I have become a hunt-and-peck typist unlike in my glory days where I could type over 75 words a minute. Between eyesight and numb fingers, I feel helpless with the internet.

And don’t even talk about telling me to use a speech to text app. The apps always misunderstand what I’m saying and interpreting it with a bunch of nonsense. Then once I correct the word errors, the punctuation takes extra steps to properly add. It’s a no win situation.

I have noticed when I’m watching TV I tend to close my left eye in order to view things clearer and to help keep me from getting dizzy. Yes, my eyesight makes me dizzy at times. Who wants to be on a rollercoaster ride while watching a movie? Not me! Thus the one eye method works. It’s like my eyes aren’t tracking exactly one with the other as they should.

My advice… relax and be grateful for whatever sight you have. Recognize the challenges that show up and look for the bright side through it all. Appreciate the adventures you may encounter along the way for there will be many.