It’s not easy to become a multiple sclerosis hero

Multiple Sclerosis heroes come in all shapes and sizes. You normally can’t pick them out from the people standing in line at the grocery store or from those seated in a restaurant…but they are there. MS heroes are those amazing people who charge into battle when they have every right to hide under the covers. They don’t fit into any particular mold, wear a noticeable badge of honor or win any bravery awards. But brave…oh, they are!!!

It’s not easy to become a multiple sclerosis hero. You can’t wish yourself to be one just because you want to be one or simply slap a label on your forehead that says “Look at me, I’m an MS hero.” You can’t gain such a title by merely blogging about it, dreaming about, or talking about it.

You become one by staying in the fight and hanging in there even when you’re shaking in your boots. You hang on through the hard times as you learn to cope with the constant changes, through the emotional rollercoaster you find yourself riding, and even through the struggle of dealing with people who disappoint you.

Part of becoming a hero is standing up (even if only on the inside) when terrible things happen and choosing to push through the hard times while holding your head up high as the tears are flowing. Yes, heroes cry. They fall, tremble, get fearful, worry, hurt…but they don’t give up!

A Multiple Sclerosis hero is…
someone who wakes up in the morning feeling terribly awful but chooses to start their day anyway.
They rise to the challenge of the day even when the challenge is overwhelming.
They see the struggle that needs to be overcome and face it…head on.
They stand in the front lines shoulder to shoulder with others just like them.
They push past the stereotypes the world uses to define MS and choose to define MS in their own terms.
They refuse to quit.
They find victory at the end of each day, even when feeling defeated.
They look MS eyeball to eyeball and say “Don’t mess with me.”
They experience pain and difficulties but push on anyway with the smallest of strength they have left.
They have learned because of being in the heat of battle that life is more than careers, fancy cars and big houses.
They experience fear, worry, doubts, and even sheds a few tears of their own, but never let those things stop them or hold them back.

Look in the mirror today because staring back at you is an MS hero! Yes, you are strong enough, you are brave enough, you are tough enough. Wipe those tears away and greet today with a smile, oh mighty MS hero!

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

 

Multiple Sclerosis has its own language

Each morning I wake up and do the same thing. I make my way to the bathroom and then to the kitchen to take my vitamins and meds. Then I get a cup of coffee. I love my coffee.

There’s something brilliant and wonderful about freshly ground coffee beans. The rich smell that comes from the crushed roasted beans makes my heart smile. Even though I enjoy each cup I make, my affinity for coffee didn’t start until I was in my 30s. I learned that coffee has to be experienced in order to be fully understood.

Have you noticed how coffee shop menus seem to have their own language? You are met with words like latte and demitasse, espresso and macchiato, doppio and breve. No longer is there a simple cup of coffee. Now there is a tall latte con panna.

Multiple Sclerosis has its own language too, which can be just as confusing as a coffee shop menu. Before MS, I didn’t know what paraparesis was, or demyelination, AFO, corticosteroid, and blood-brain barrier. Those words were foreign to my vocabulary. It took me time to learn what they meant along with the hundreds of other new words I was now faced with.

When someone comes along who doesn’t understand MS, give them a break and take the time to educate them on the language of MS. Remember, at one time you didn’t know much about it either. Don’t assume they know what optic neuritis is. Explain what it is in the best every day terminology you can come up with.

You don’t have to know all the technical terms, simply explain it how you live it. Tell them that your vision is “messed up.” That it’s blurred, doubled, painful and that colors are muted or appear gray…that even the red shoes they are wearing or the yellow banana they had for breakfast are gray in color.

Take the time to turn educating people into something memorable rather than a boring rendition from a technical book. We learn better that way anyway. You know more about MS than they ever will because you live with it every day. You don’t just hear the words, you live them.

MS has to be experienced to be fully understood, but don’t let that stop you from telling others about your experience. Seize each opportunity you have to teach others about MS. Some won’t get it, but many will.

I know they won’t understand the feelings that go along with each symptom you endure or the loneliness and isolation you feel at times, but they will begin to learn how different and difficult life is for you. They will start to see your struggle. Be patient as you teach. You didn’t learn things overnight so don’t expect them to either. If they want to understand, they will hear what you have to say.

And if it helps, share the Illustrated View of Multiple Sclerosis images I have made to give them a slice of humor with their learning. It always helps to laugh. (View images)

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

 

Once upon a time there was a girl diagnosed with multiple sclerosis…

The standard beginning and ending to a story is ONCE UPON A TIME and THE END. Ask a kid to tell you a story and I can guarantee you that most will use those very words. I’m not sure who coined those phases, but they’ve been a standard for a very, very long time.

Each day you get the opportunity of turning the page to the story of your life and filling it with experiences, adventures and many ONCE UPON A TIME moments. Today may begin something like this:

Once upon a time there was a girl / guy who woke up filled with amazing strength ready to accomplish great thing…

Or maybe it goes something like this:

Once upon a time there was a girl / guy who loved their bed with a passion and decided that today was the day to ensure their bed didn’t spend it alone…

Each day starts differently. Some days begin with hope and confidence while others start with tears and despair, yet no matter how your day begins, it’s important to remember that for most people it won’t end with a THE END scrolling across the screen or stamped on the last page. Today will come to a close and the last words written will be TO BE CONTINUED.

Yesterday was a TO BE CONTINUED day as was the day before that and the day before that. That makes today a new day with a new page ready to be written. You get a chance to fill the pages of your day with one personal episode at a time.

Some of my days are like a scene from an Indiana Jones suspenseful adventure filled with trap doors and moving walls, while other times they are more like an I Love Lucy episode filled with giggles and crazy predicaments.

Today may be a day you dread because it’s filled with appointments, meds, tests and more tests (we seem to have more of those in a year than most people have in a lifetime), but no matter what fills the pages of your day, you have a future to be written and a day to get through. Your story isn’t over.

You may currently be in the part of your story that you don’t want to be a part of, but as the page turns and a new day begins you get the wonderful opportunity of starting over. Things are going to work out no matter how impossible they may seem. Somehow they always do.

Our days don’t consistently unfold the way we want or expect them to, but somehow the tears get wiped away and things don’t turn out quite as bad as we thought they would. We get a chance to turn the page and keep writing. If you have to put your pen down to take a break, that’s okay. Just keep writing. You have an amazing story to tell…yes, YOU!

MS Gets on My NervesMS WarriorMS Superhero

 

Some mornings I wake up on empty and lacking strength

You would think a night in bed would be helpful for someone with multiple sclerosis. It would be amazing to have the energy in my body build up overnight like that. This way by the time I wake up I would have the strength needed to pull the covers back and drag my legs over the side of the bed to start my day but many times as soon as my feet dangle over the side of the bed I’m ready to go back to sleep.

It would be wonderful to be like one of those online game characters who gains lives for taking a break. You would think I could gain more strength than I do with a night of sleep, but I think that would mean I would have to actually have a night of sleep.

My nights are normally not filled with restful sleep. They tend to be moments of tossing and turning, pain, muscle spasms, and an overactive brain that won’t shut up. It’s kind of hard to sleep with all that going on. At least I’ve eliminated the multiple nightly bathroom trips by having a catheter but I haven’t had a restful night of sleep in years, and the times I do actually sleep, it seems to not help as much as it should.

But just because my body is lacking strength at the start of my day, just because I can’t run a marathon or even walk into the next room, that doesn’t mean I’m powerless. Most of the time when I have exhausted myself doing the simplest of things at the beginning of my day like preparing for a morning shower or even getting dressed…I stop to breathe. Breathing is good.

Like this morning, I sat on the edge of my bed exhausted and worn out saying to myself “in through the nose, out through the mouth.” I don’t know why, but it calms me when I remind myself to just breathe. I figure as long as I’m breathing, I’m fighting…and since I’m fighting, I’m not powerless.

I’m not my illness. I’m not my disability. I’m not useless, hopeless or a lost cause. I’m me, and that goes for you too. You are not multiple sclerosis. You may be weak and exhausted even at the start of your day, but you aren’t broken and you definitely aren’t powerless. You’re just a little banged up, cracked and bent in a few places, but that just adds character.

If I can get up in the morning and keep pressing on, I’m not powerless. And even when I can’t do all those things on my own, I’m still not powerless. I’m simply me hoping for a better day today than I had yesterday. Hang onto your determination and courage to keep going…and fight. No quitting allowed today.

MS Gets on My NervesMS WarriorMS Superhero

 

I have a to-don’t list to help me manage my multiple sclerosis life

Have you ever had a time when you had full intentions of getting something done before the day was over, but it didn’t happen? It seems I’m a pro at it. I can have something at the top of my to-do list and even have an alert on my phone to keep me reminded to get it done, but then I become so exhausted lacking any energy to lift my arms and sometimes even my head that whatever I had on my list just isn’t going to get done.

That happened to me yesterday. I had great plans of cleaning the bathroom and taking out the trash. Both seem simple enough, right? And they are, until fatigue decided to pay me a visit.

Once fatigue shows up, you can forget me being able to get anything done. I can tell you this, it is one of THE MOST unwelcome guests in my life, multiple sclerosis being the ultimate first. Fatigue can happen early in the morning sometimes as early as me opening my eyes with the morning sun, after my morning shower, part way through the day, or even in the middle of doing an important task. Its schedule is random and it seems to have no plans of sharing the itinerary with me.

I have had to learn to go with the flow on a daily basis. That’s not always an easy thing to do either, but it is necessary if I plan on making it through the chaos that surrounds me. One thing MS has done for me…it has taught me to value life way more than I ever did in the past and to not take things like being able to work for granted. Work was my passion, but now that my career is a thing of the past, living has become my new passion.

MS changed things. It made life more difficult in some ways but it also gave me a different perspective on life itself. I see how precious each day is, how special caring people are and how short life can actually be.

I woke up this morning to a new day. My phone reminders are ready with a few things I need to get done but I’m okay if I have to shift things around or if I fall asleep in the process and miss out on getting anything done at all. Life is too short to get caught up in the land of to-dos.

I have instead made a to-don’t list which for me makes my MS life so much easier to manage.

  1. Don’t hide your struggle.
  2. Don’t try to conquer everything all at once.
  3. Don’t think about what could have, should have, would have been.
  4. Don’t let stupid things get to you.
  5. Don’t hold onto hate.
  6. Don’t place irrational conditions on your day.
  7. Don’t neglect the people in your life who have stuck around.
  8. Don’t cry over spilled milk.
  9. Don’t forget to find reasons to smile.
  10. Don’t compare your journey with others.
  11. Don’t take anything for granted.
  12. Don’t lose your sense of humor.
  13. Don’t worry so much.
  14. Don’t wait for the perfect timing.
  15. Don’t give up.

MS Gets on My NervesMS WarriorMS Superhero

 

Things NOT to say to someone living with multiple sclerosis

We use words every day to communicate our opinions, frustrations, anger, appreciation and love. Many times we don’t even pay attention to the things we say or how we say them as the words tumble out of our mouths quicker than we can actually think. Those words have the ability to bring hope, tenderness and support, but they can also be used to condemn, attack and ridicule.

Occasionally the words people use when trying to help a person living with Multiple Sclerosis, hurt more than help. It’s my hope that those times happen unintentionally, but they still happen. In their attempt to do something soothing by passing on a few words of wisdom, those words come across more like a punch in the gut or a jab to the heart instead. So, just in case someone would like to know the words that hurt, pass this list along.

Things NOT to say to someone living with Multiple Sclerosis:

  1. You don’t look sick.
  2. You shouldn’t drink diet coke.
  3. OMG, this diet I’m on cures MS.
  4. OMG, this vitamin will leave you symptom free.
  5. Aren’t you gluten free? You should be.
  6. Try this herb; it helped my cousin’s uncles’ sister’s friend who has MS.
  7. Well, aren’t you taking your meds? (Yes….) Then why is your MS bothering you still?
  8. Are you contagious?
  9. You shouldn’t eat meat.
  10. What did you do to get MS?
  11. My aunt had that and now she’s dead.
  12. If the heat bothers you, don’t be in it… or move.
  13. I heard a vaccine caused it.
  14. Why are you dragging one of your feet?
  15. You need to get out of the house more.
  16. Maybe if you exercise more.
  17. Well, if you’re in remission, why are you on meds?
  18. That celebrity with MS seems just fine, why aren’t you?
  19. Are you sure it’s MS? How can doctors be so sure?
  20. Stop using MS as an excuse. You can’t feel that way ALL the time.
  21. Maybe you just need to try a little harder.
  22. Why don’t you try a different medication that doesn’t cause so many side effects?
  23. You seemed fine the other day.
  24. Why are you always so tired? You slept ALL night.
  25. Oh, trust me, I know EXACTLY how you feel!
  26. It really can’t be that bad.

MS Gets on My NervesMS WarriorMS Superhero

 

Living with multiple sclerosis: will you have a good day with bad moments or a bad day with good ones?

A mosquito woke me up this morning. Do you know how annoying it is to have something you can’t see buzzing around your ears? Bzzzzz, bzzzzz, bzzzzz. I swatted at the air a few times to distract it and make it go away, but each time I did, it just came back again. I’m sure I will find a welt or two somewhere on my arms or neck later on from its bite. Just thinking about it is making me itch.

For the record, since I was a kid mosquito’s have had this weird attraction to me. I have no idea why. I can be in a room full of people wearing tank tops and shorts and I will be the one every mosquito in town comes to have a meal with. I guess I’m just that tasty.

I told someone once that multiple sclerosis is a lot like a mosquito. Think about it…like the mosquito, MS is crazy annoying. You don’t see it as it buzzes about and it won’t go away no matter how much you swat at it. You don’t see its bite as myelin starts to get chewed away, but you sure feel the effects later. Oh, and in a room full of people, you happen to be the lucky one it was attracted to. What a glorious day…NOT!

Who would have guessed we would be such lovable people? I’d rather punch MS in the face than have it bite me again, but I have yet to get it to sit still long enough to knock it out. I think I’ve wounded it a few times, and for that I’m thankful.

This is my life. It’s filled with difficulties, pain, falls, and brain fog moments. It is accompanied by wheelchairs, walking canes, leg braces and urine bags. I wish I could trade it all in for something else, but I can’t…so I live on.

Although life can be hard, it has many beautiful moments mixed in which makes everything worth fighting for. I’ve noticed that you can’t get rid of all the bad things around you in order to just keep the good. There will always be weeds in a beautiful garden, a rotten grape on a fresh picked cluster from the vine and dirt on your shoes.

Good and bad always go together, but from where I sit the bad makes the good so much more beautiful. I appreciate life more now than I did before MS. I value the small things and don’t take the simple pleasures in life for granted any more.

Sure, times are tough and I still cry a lot. I actually broke down in tears this morning while taking a shower, but when I was through, I took a deep breath and dried my tears. That little bit of crying did wonders for my day. It seems it leaked out the pressures in life that had been building up.

I can’t promise you that multiple sclerosis is going away any time soon, but I can promise that you won’t be alone in the fight and that there is something beautiful in the ugliness of a life with MS.

Will you have a good day with bad moments or a bad day with good ones? It’s all a matter of perspective. I love Shel Silverstein and he wrote a poem that explains it all. I have all of his books and will read them when I need a smile to break through the gloominess.

Zebra Question
by Shel Silverstein

I asked the zebra
Are you black with white stripes?
Or white with black stripes?
And the zebra asked me,
Are you good with bad habits?
Or are you bad with good habits?
Are you noisy with quiet times?
Or are you quiet with noisy times?
Are you happy with some sad days?
Or are you sad with some happy days?
Are you neat with some sloppy ways?
Or are you sloppy with some neat ways?
And on and on and on and on
And on and on he went.
I’ll never ask a zebra
About stripes
Again.

MS Gets on My NervesMS WarriorMS Superhero