Multiple sclerosis can be a lonely disease.

I don’t think the world will ever understand that we don’t need their unfounded, unproven, misinformed opinions or their self-help miracle cures, mineral water and diet plans. We simply want to know that they care. Yes, it really is that simple. A kind word, a smile, a helping hand…you’d be amazed at just how much they actually help get us through the difficult times.

We want to stop being looked at as if we are a green martian when we park in a disabled parking spot at the store because we look too young and healthy to need it. We want people to be considerate when we struggle opening a door they so conveniently rushed through only seconds before. We want a chance to rest in the afternoon without being thought of as lazy. We want to be invited out with everyone else for lunch or an evening of fun even if we have to turn down the invitation later.

Multiple sclerosis can be a lonely disease. It can isolate you especially when your mobility decreases giving you fewer options for socializing and interacting with the world around you. The internet helps to bring people into your world but online avatars, screen names and hashtags can only do so much.

When you find yourself having a down day filled with loneliness, tears and a loss of hope that anything will ever get better, don’t lose heart. You are truly not alone. My struggle may be different than yours, but I understand the depths of despair that happens because of a disease that has taken over and altered my world in ways I never thought possible.

All those hurtful comments people make and those misunderstood words of advice from well meaning friends, if they are not helpful, toss them to the side. Don’t hold on to anything that pulls you down whether that be a thought, words or even a person.

Let go of all the junk you have been holding on to—those things that weigh you down and that people have spoken about you or to you that do no good. They’re not worth carrying around. The only thing you need to be carrying is your head…carried high.

MS Gets on My NervesMS WarriorMS Superhero

 

How do I live with multiple sclerosis?…I just do it!

When people ask me how I do it, how do I get through my day living with multiple sclerosis, I’m not really sure how to respond. The best answer I have been able to come up with is, “I just do it.” I know that’s not a deeply profound response and Nike already has rights to the saying, but the question is not really something that can be properly answered.

MS invaded my life without my permission. It simply moved in and took over. It’s not something I can simply choose to no longer have around. If only it were that simple. To just tell MS, “Get lost.” Wouldn’t that be incredible if it worked? Only I would use some rather different words that might offend some people and I would be sure to bring an uzi, a battle axe and a few hand grenades along with me too.

Since I can’t force MS out of my life, I have to learn to live with it. I really have no other viable option. I can try ignoring it, but ignoring something that is daily hindering my life and chiseling away at my insides just isn’t possible.

From the outside my invisible struggle doesn’t seem so bad to people. It actually looks quite easy. I get to ride around in a wheelchair all day and no longer have to go to work. Really? You want to make that comparison.

But if they could look inside my body and truly see what I am dealing with every day…oh, my, what a different story they would have to tell. They would see the countless moments of pain, muscle spasms, brain freezes, bathroom mishaps, dropping of anythings I hold onto, swallowing difficulties, fatigue, vision problems, and dizziness I go through.

If there was a picture window into my MS world, people would see that my Central Nervous System (CNS) looks much like the chaos after a storm has blown through town tearing up everything in sight. Some areas in my CNS have been damaged and others are completely destroyed. The foundation is still there, but the pipes have burst, the electricity is out and the roof has blown off.

After a storm people work tirelessly to patch things up as best they can to try and get their house back in working order, but if you have ever been through a storm you know that things are never the same in the house. There will always be remnants of the storm that blew through and never a guarantee that another one won’t happen again.

Today, I live in a pieced together body with duct taped wires, glued together rafters and heavily caulked windows. Things still leak, wires still get crossed and new storms still show up. What do I do? I just do it.

Elizabeth Taylor, who struggled daily due to lifelong chronic back pain, said it oh so well…“You just do it. You force yourself to get up. You force yourself to put one foot before the other, and [gosh darn it], you refuse to let it get to you. You fight. You cry. You curse. Then you go about your business of living. That’s how I’ve done it. There’s no other way.”

MS Gets on My NervesMS WarriorMS Superhero

 

internet chat

My multiple sclerosis brain fog moments

I lose words more than I lose my car keys…and they’re harder to find too. I think conversations with me are more like a game of charades than actual conversations. I’m sure it frustrates those I’m talking too as they try guessing the word I’m fumbling around in search of. It can become quite comical too as I point, make hand motions and slap my leg in an attempt to help the process along.

ME: Can you hand me…? [as I point across the room]

FRIEND: uhhh…a pen? a glass of water?

ME: No [as I tap my thumb to my finger in a pinching motion unable to even describe what I’m trying to say. I sit in silence making hand gestures in hopes it resonates with her.]

FRIEND: Nail clippers? Scissors? Paperclip?

Minutes pass and all I’m trying to say is “Can you hand me the TV remote?” Simple, right?

Not being able to communicate can be frustrating. I do much better in writing. There’s nothing worse than trying to get your point across or share a meaningful moment with someone while losing the thought you where trying to share. Sometimes my attempt in describing a word takes so long that I actually forget the thought I had in the first place. It takes skill to keep me on topic. A skill I’m not always very good at.

Yesterday, I could tell my words were getting stuck and mixed up more than usual. When that happens, I have a tendency to not speak as much. I just don’t want to frustrate people…or myself.

You know how people say to pick and choose the arguments you get into. Well, I pick and choose each conversation I have as well. So if I choose to share a thought with you, it’s going to mean something because I decide to break out of my silence in order to chance a good flow of words.

I have noticed that the more frustrated I get, the more my words tend to get stuck. The trick for me is to stay calm and not allow my mind to wander in the conversation. That may mean I talk slower, talk more direct, and use shorter sentences. But that’s just my way of coping and working with my disability. It keeps me from getting too overwhelmed. I say what I have to say and move on.

When you find yourself getting lost in a world of words, know that it’s okay. You’re not going crazy and you definitely aren’t alone. There’s an entire population of us hand gesture, charade playing, word searching MSers out there. Take a deep breath and have some fun as you turn your conversations into a game of “Guess What I’m Saying.”

And always remember that laughing actually does makes things better. I don’t know what I would do if I couldn’t laugh at my own jumbled up, mixed up, messed up brain fog moments.

MS Gets on My NervesMS WarriorMS Superhero

 

Fight with me in my multiple sclerosis journey, not against me

All right, let’s say this once and for all and get it all out in the open.

I have multiple sclerosis. It is an incurable chronic progressive disease. There are some great strides being made towards finding a cure, but at this time there is no known cure. This disease will continue to worsen in my life as the months and years pass by. It is extremely unpredictable so it’s possible it could take an entire lifetime for my body to get to a point of causing me major problems or it could happen tomorrow.

Google doesn’t have all the answers either. It is a fallible resource filled with more ideas than facts. All those cures you keep telling me about are opinions of someone who doesn’t have enough facts to back up their claims. Some of the information is even falsified in order to benefit the person or company declaring the cure. Opinions without facts are not going to end MS. Some of the things you read about may help someone manage their symptoms, but nothing is a cure.

Another thing…I didn’t cause MS in my life. There is no past mistake, sin or wrongdoing that made me develop it. If that were the case then the entire world would be living with MS because no one is perfect. That’s right…I’m not perfect and neither are you.

I didn’t eat the wrong foods, drink the wrong drinks or take the wrong meds to cause it either. MS has been around for hundreds of years, way before GMOs, aspartame or food in a can. Again, if those things caused my MS, then the entire world population would have it because everyone has been exposed to them…even you.

It doesn’t matter how much you ignore MS, deny its existence or pretend it doesn’t affect me, MS is real. Let me say that again…multiple sclerosis is REAL! I know because I live with it every single day. It’s not all in my head. Well, on that one we can both agree because my MRI would validate that point. My brain lights up like a Christmas tree on the scans because it’s covered in scars. Those scars are my battle wounds as my body fights itself. That’s right, signals got crossed somewhere along the way and my body thought my own body was the enemy.

Each morning I wake up swinging because I’m a fighter not a quitter. Some days I’m strong and can tackle the day with gusto, but I also have times when I’m struggling and need people to help me do everyday tasks that shouldn’t be a problem even for a 3 year old. That’s just how MS is. It’s unpredictable.

I need support, love and care from the people in my life, not their judgments, opinions and criticisms. I will fight MS until my dying day…that’s a fact, but if you are going to be a part of my life then I need you to fight along side me, not against me. My life hasn’t ended because of MS, I just need more help along the way.

MS Gets on My NervesMS WarriorMS Superhero

 

broken heart

A multiple sclerosis broken heart really happens

There is no cure at this time for multiple sclerosis but there is a cure for a broken heart. I know some people will disagree with me about the “MS cure” statement, but it’s true. There is no 100% proven way to fix MS. We can manage our symptoms, and for that I’m extremely thankful, but there is nothing yet that will literally eradicate MS from the planet aside from a miracle.

A person’s heart on the other hand, it can become broken, sometimes even completely destroyed when multiple sclerosis becomes a part of their life, yet no matter how damaged it may be, that broken heart can be mended. MS has this way of flipping someone’s world on its head, spinning them around and around creating dizzying chaos and confusion, and then leaving them to figure things out…many times all on our own.

A broken heart that comes from that kind of whirlwind hurts. Some people may have only experienced a slight fracture while others are left holding pieces of a shattered mess in their hands. The heart is fragile and breaks regardless of how strong someone thinks they are.

If you look really close at my heart, you will see the cracks and missing pieces from some of the difficulties I have been through because of MS. Things like increased progression, having to use a wheelchair, needing help for things most of the world takes for granted, ending a much loved career and losing friendships.

But you will also see the beauty of my life shining through those very cracks. The pieces have mended and the cracks have healed, but the scars are still there to show what I have been through. Those scars are my beauty marks and I have to say I’m darn proud of them because they are a part of who I am.

You may be in the middle of a breaking heart right now. I know how badly it can hurt, but you are going to get through this and your heart is going to become a thing of beauty. Don’t stuff the pain down deep inside trying to hide it away. Let the emotions out as they come. Out of sight, out of mind doesn’t actually work. Let it all out so you can heal.

The amazing thing about a broken heart, unlike MS, is that it can heal. It takes time, but it will happen. Be patient with yourself and take it slow. Your heart is beautiful. Give yourself time to heal then let your life shine through…scars and all.

MS Gets on My NervesMS WarriorMS Superhero

 

A life with multiple sclerosis isn’t as easy as some people think

One of the hardest things about living with multiple sclerosis is the pressure from some people to just get better. It’s almost as if they think I have this secret power tucked away in my sock drawer that will rid my body of all the symptoms, difficulties and struggles MS is causing in my life, but for some unknown reason I choose not to use it.

When I am unable to join in on the outings, parties, dinners and trips people are taking part in, the vibe I get at times from them is one of doubt that things could actually be “that bad.” I can almost see the thought bubble above their heads as they wonder how it is I can go from feeling okay one minute to feeling like crap the next.

The best thing anyone could ever do for someone living with MS is to allow them to decide how they’re actually feeling and what they are capable of doing. I like it when people leave those choices up to me and are okay with what I choose. After all, it’s my body, it’s my life. I should know how I’m feeling.

Sometimes I do need that tough love push…but most of the time I don’t. I push myself harder than anyone else could anyway. Most of the time I need someone to tell me it’s okay to stop pushing so hard, to give myself a break and simply be.

Those that love me enough to give me the option to choose and are okay if my decision is different than what they want or planned for…those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel.

Living with MS can be extremely lonely and amazingly enough it’s possible to feel that way sitting in a room all by yourself as well as in a room full of people. Sometimes you just want someone to sit by your side and simply be there, to give you a hug, to listen, to care. No agenda…just be there.

When you find yourself sitting in a puddle of your thoughts wondering where everyone has gone, know that there are others with MS who understand. We may be separated by miles and miles of distance and separated by oceans and seas, but we are connected through wires and keystrokes. We are in this together. Sending you a virtual hug…from me to you today.

MS Gets on My NervesMS WarriorMS Superhero

 

Multiple Sclerosis actually means Multiple Scars

If you could see my insides, you would see scar after scar after scar. I guess it makes sense that Multiple Sclerosis actually means Multiple Scars. You see, the nerves in my brain and spine have been chewed to bits…literally.

I tell people that the nerves in the body are much like the wiring in a house. Mine have been damaged to the point they are short-circuiting and signals are getting crossed. This causes terrible chaos in my life. I guess you could say I’m a real live wire.

I have some nerves with such extensive damage that repair cannot be made. In their place now exists a black hole. A scar so deep that nothing could ever live there again. If you took the time to learn of my scars, you would hear about what life is like for me. You would hear of the pain I endure, the way my brain confuses thoughts and words, how my tired is different than other people’s tired, and how parts of my body have gone numb and lost their ability to function.

But do you know what else you would hear? You would hear about how strong I am and how at the end of the day I’m still going. I won’t quit even though I’m covered in battle scars. Those scars are a part of my life now.

I may not be able to do the things I used to do because my wiring is a jumbled mess, but just because people can’t see what’s happening inside my body doesn’t mean the damage isn’t there. I wake up each day to a fight…a war. Not one that I chose, but one I must endure. At times I am battle weary, but I will never be a quitter and I will never lay down my sword. I’m a warrior that way.

My scars are laid out like a constellation visible only by an MRI. They shine bright even though they are hidden in the dark. When I pause to look at the stars in the nighttime sky, I see amazing beauty as I watch the lights twinkle and glow but did you know that stars are just broken pieces of matter? They are the scars of the universe and yet even though they are caused by tragedy, they give hope to millions.

Today your sword may be heavy and your body tired…but you are still going. Everything you accomplish is a victory no matter how small. Each muscle you move is a triumph. Regardless of what the day holds, you will not be defeated. You are a winner covered in scars bringing hope to others without your even knowing it. People watch how you live your life and are in awe of your tenacity and courage.

If I can endure, if I can keep going, if I can hold on…then I know you can too. Together we create an amazing display of sparkles in the universe. Together we shine bright. We will not be defeated or give up.

MS Gets on My NervesMS WarriorMS Superhero

 

Living with multiple sclerosis…shift happens

Multiple Sclerosis has taught me a lot about myself. It has taught me how to adapt to change and shift, many times on a daily basis, to the unexpected. No one likes to have their life disrupted by the unexpected. It makes our daily life hard to manage and plan out, but with MS you learn that it’s okay to change plans; that it’s okay to call up a friend to let them know you have to cancel today because your legs aren’t working or the fatigue has gotten too intense to handle; that it’s okay to acknowledge the struggle.

If you don’t learn to go with the flow, the flow will swallow you up in the process. I have had to learn to be okay with not being able to do it all myself. Ms. Independent and Ms. I-Can-Do-It-Myself have become Ms. I-Need-Help and Ms. Wobbly.

Did I like the lesson? Absolutely not! Was it easy to swallow my pride and allow others in so they could help? Absolutely not! But it was a lesson well learned and one that I’m still learning to this day.

I can remember the first time I started using a cane to help me walk. I was at the neurologist’s office for an appointment knowing full well I was struggling with my balance—holding onto walls just to make it down the hallway without falling down—when the news became a reality. She said, “You need to get a cane.”

My first thought was, “No way, I will not give in to MS, and besides, that would be so embarrassing. I don’t want to draw attention to myself.”

Then, as if she could read my thoughts, she said, “It will be much easier for you to use a cane than to have to deal with a broken bone due to a fall.”

I thought to myself…broken bone or broken pride…hmm! I chose to break the pride. That day I bought a cane. Over the months ahead I learned to adapt to its use. Some of those changes were easy, some were hard, but all in all they were great lessons to learn. I finally conquered my pride…or so I thought.

A year after I started using a cane regularly, I was back in the neurologist’s office due to more falls and instability. I remember that day just as vividly. She said to me, “You really need to consider using a walker. It will help you by giving the added support you need.”

I was devastated hearing that. I knew she was right, but in my mind all I could think about was how I was letting MS win. Yet again, the neurologist was right and I learned an even bigger lesson. I learned that I still had pride in me that I was holding onto.

I wrestled with the same thing transitioning to a wheelchair. It seems like each new life-changing moment has hit me pretty hard, yet with each bruise, with each fall, with each shift, I have learned something new about myself and about life. Lessons that someone can only learn by going through the struggle.

I could fumble and stumble my way through life denying the battle I’m in or simply adapt with the changes when they come. It doesn’t mean I’m giving in or that MS is winning, it simply means I’m strong enough to know when I need help and that I’m not too prideful to receive it. That makes me the real winner.

The journey ahead will have its rough places. There will be cracks in the road, speed bumps, dips, terrible sinkholes, and mud puddles but I can tell you from experience that no matter what comes your way, you will be able to handle it. You are strong enough and brave enough.

The biggest lesson I have learned through it all—the biggest thing multiple sclerosis has taught me—is that shift happens.

MS Gets on My NervesMS WarriorMS Superhero

 

You didn’t cause Multiple Sclerosis

It can be hard living with a chronic illness that people can’t see and choose to not understand. Just trying to explain why you aren’t a quadriplegic or a paraplegic even though you have lost much of the feeling in your feet, legs, hands or arms is difficult. It seems in their minds that if you have no feeling in them, then you shouldn’t be able to use them.

I love people’s curiosity about multiple sclerosis, especially the young people. Those who ask questions and really want to understand what MS is all about. I admire their questions and welcome them because it gives me a chance to educate people about how my insides really feel and the struggle I face every day.

The people that I have the hardest time with are those who choose to not understand and not care. They could be family members, co-workers, bosses, friends, or even strangers. Their lack of trying to understand is their choice and speaks volumes about who they are as a person. It’s a heart issue on their part…it has nothing to do with you.

When someone attacks your inability to do something or your pain and struggle with statements like “suck it up, it can’t be that bad”…it’s those people who need a moment living with MS to understand that it actually can. If I could give away my MS for just a moment in time, I would give it to those people so they could get a reality check.

What I have learned over the years is that you will always meet people with a lack of compassion or understanding. Don’t let their ignorance get you down. It is showing their weakness, not yours. In a way, they are the real disabled people, not you.

Do your best to walk away (or wheel away if in a chair) and shrug off their insensitivity. Yes, it can break your heart. I know the feeling of not being understood, but you can’t let their insensitivity get in your head and make you think you are “less than” or unimportant and useless.

You didn’t cause your body to turn on itself and begin attacking your own Central Nervous System. You didn’t eat or drink the wrong things, live a bad life or not take the right kinds of supplements. Just like you can’t think yourself out of it, will you body to be whole or think positive enough to make it go away. MS just is.

I know I say it often, but keep your head up. You are going to make it through today. Don’t listen to other people’s opinions about what you should do or how you should live affect you. You are amazing and a treasure just as you are. Take a deep breath, shake off their opinions or lack of understanding and keep moving forward.

MS Gets on My NervesMS WarriorMS Superhero

 

rainbow

Broken by multiple sclerosis but still standing

I know how difficult things can get. It’s not easy making it through the day when my body is fighting against me. I didn’t ask to be the strong one. At times when people tell me to stay strong, I actually feel so weak that I have no idea how those words are supposed to be comforting. To me, they feel more like a punch in the gut than the gentle hug they were meant to be.

Stay strong? I don’t like to admit that there are times when being strong is simply not possible. Oh, I try. Boy, do I try. But when I wake up in pain, exhausted, weary, and unable to feel parts of my body because the numbness keeps creeping up my legs, arms and even my face…the struggle crumbles me. Stay strong? I feel more like a crumpled piece of paper than a rod of steel.

How am I supposed to stay strong when I am broken? People who say they never break are either lying to you or to themselves. I have been broken many times and feel more like a pieced together puzzle that’s been glued together over and over again than a strong oak simply bending in the wind.

It’s a great thing to think about, being a tree swaying in the wind, but anyone that has ever lived through a tsunami, hurricane or tornado knows that even the strongest of oak trees break. It may still be standing when the storm subsides, but scars are left behind as a reminder of what once was as branches and sometimes even the trunk itself breaks.

The truth is, multiple sclerosis changes you. Multiple sclerosis actually means multiple scars. It leaves scars both in your brain and spine, and although the physician that named it didn’t mean it this way, but MS also leaves scars in your heart. You change.

The storm you are enduring…people can’t see it. Some try to understand, but without living in your body and experiencing your journey by walking in your shoes, they just can’t understand the mental and emotional pains you face each day along with the slew of symptoms you have to endure. They don’t know how often you cover your tears with a smile and piece together your heart with bubble gum and shoestrings.

Are you stronger because of MS? Absolutely you are. You are stronger even in the breaking. You have endured much and just like how a tree grows new limbs once a storm has torn it apart, you are growing and changing every day. You may be at a place where you feel like the storm is overtaking you, but the winds will calm down and the sun will come out. It may not seem like it, but it will happen.

Hold on with everything you’ve got, then when you find your strength again…stand proud of what you’ve come through and all that you’ve overcome. You may look tattered and worn, but you are still standing even if you can’t physically stand…you are standing tall on the inside. That speaks volumes about who you are. That’s how warriors are made and whether you feel like it or not, you are a warrior. A mighty MS Warrior.

Not many people can make it through a storm, break, then keep standing…but you are doing it. So the next time someone tells you to stay strong, smile in your brokenness realizing that your scars speak of your strength and tell a story that only a warrior knows and only a warrior can tell.

MS Gets on My NervesMS WarriorMS Superhero