How do you live with Multiple Sclerosis?

When people ask me how I do it, how 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 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 say to MS, “Get lost.” Wouldn’t that be incredible? Only I would use some rather different words that might offend some people and would be sure to have 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. There’s no other choice. I can try ignoring it, but ignoring something screaming in my ear and chiseling away at my insides isn’t possible.

From the outside my invisible struggle doesn’t seem so bad to people. It actually looks quite easy. But if you could look inside my body and truly see what I am dealing with every day…Oh, my, what a different story you would have to tell.

If there was a picture window into my life, 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, others completely destroyed. The foundation is still there, but the pipes have burst and the electricity is out.

After a storm people work tirelessly to patch things up as best they can to try and get their house back working, but it will never be the same. There will always be remnants of the storm that came through and never a guarantee that another one won’t blow through again.

Today, I live in a pieced together body with duct taped wires, glued together pipes and heavily caulked walls. Things still leak, wires still get crossed and new storms still show up, but 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.”

Multiple Sclerosis isn’t the smiling face you see in brochures

As a kid people would ask me, “what do you want to be when you grow up?”

My answer would change often, but I would mostly respond with Teacher, Scientist, Minister or Musician. Never once did I even think of saying I want to be a disabled person living with a chronic illness. That was never even a thought.

But now, after multiple sclerosis, life is different. I’m no longer the invincible, untouchable kid I once was. I grew up and life became real.

You may see pictures of me smiling, but the truth is my nights are also spent crying. That’s right, MS isn’t the smiling face you see in those brochures or the victorious athlete crossing the finish line in those advertisements. It’s everyday people like you and me facing weakness, cognitive difficulties, bladder problems, tremors and numb body parts.

I want the truth about MS to be seen by the world. I want to hear about people with MS that are facing hell, yet making it. That’s real life with MS.

I want to see the struggle. I want to know about the problems. I want to meet the courageous, the brave, the unstoppable, the true warriors.

I want to hear how lives are being lived in spite of a horrible disease.

I want the world to know about the sleepless nights we face, the embarrassing moments we endure and the emotional chaos we go through every single day.

The world doesn’t need any more brochures covered in rainbows and smiles. Sure, we smile and enjoy life in spite of our disease, but there is a lot hidden behind our smiles that the world needs to know about.

To the advertisers, the drug companies, and the TV producers: Don’t cover up our struggle. We’ve been through too much, come through hell too many times, to have our battle scars hidden away just to make a few people more comfortable with the effects of MS. We aren’t comfortable so they shouldn’t be either.

To the doctors and nurses: remember that MS isn’t easy. That the things you say, the way you help, the care you give really does matter. That just a simple “I’m here to help you any way I can” matters. That listening to our tear filled emotional breakdown really does help. That even though you may feel helpless in coming up with a solution to ease our pain in the short time you see us, we face those same fears and feelings every moment of every day. Please be patient with us, your patients. Sometimes you are the only ones we talk to about what we are going through.

In a perfect world, MS wouldn’t exist. There would be no pain, fears, difficulties or struggles. But we live in a world filled with brokenness. It’s okay to cry, fall apart and actually feel afraid. That’s part of being human. That’s a part of living.

Allow yourself to feel, get angry if you need to, cry if you must, then wipe your tears, hold you head up and conquer the day. You are a warrior that may be weary in the fight, but even on your worst days you are still fighting.

Never doubt, even for a minute, that you are special. You are amazingly special and incredibly important. Hold your head high today. You got this!

Dare to Be
When a new day begins, dare to smile gratefully.
When there is darkness, dare to be the first to shine a light.
When there is injustice, dare to be the first to condemn it.
When something seems difficult, dare to do it anyway.
When life seems to beat you down, dare to fight back.
When there seems to be no hope, dare to find some.
When you’re feeling tired, dare to keep going.
When times are tough, dare to be tougher.
When love hurts you, dare to love again.
When someone is hurting, dare to help them heal.
When another is lost, dare to help them find the way.
When a friend falls, dare to be the first to extend a hand.
When you cross paths with another, dare to make them smile.
When you feel great, dare to help someone else feel great too.
When the day has ended, dare to feel as you’ve done your best.
Dare to be the best you can –
At all times, Dare to be!
― Steve Maraboli

The ABC’s of a life with Multiple Sclerosis

Life with Multiple Sclerosis is filled with some crazy, unexpected and painful moments. It’s not a disease for wimps, that’s for sure. Here are some of the basics of living with MS.

A – awareness
There is still a huge lack of understanding by the general public about MS. We are not contagious, we didn’t do something to cause MS in our lives, there is no known cure, and it’s not all in our head…well actually it is. Our brain MRIs prove that.

B – brain lesions
That’s just a fancy way of saying that our brain has wounds inside. Some of them heal well while others leave nasty scars that disrupt the communication along the nerves that make our body work. That’s the reason we do the things we do…most of the time. Some times it’s just who we are and has nothing to do with our brain.

C – cramps and spasms
Our muscles tighten up causing us great discomfort and pain. Any muscle can be affected from those controlling our hands, to the ones around our ribs, to those that move our big toe. Think of it as a constant Charlie Horse, just not in the leg.

D – drunk walking
We have full intentions of walking without bumping into things but it seems the walls, floors, tables and chairs have become our friends. They need some love and appreciation from time to time and we just so happen to be the ones to give it to them.

E – eyesight problems
Our vision can become blurred, doubled, dimmed or even gone. Sometimes it’s even accompanied with pain and color loss. So if you see us wearing uncoordinated clothes or find us making funny squinting faces, no need to stare…that’s just how we roll.

F – falling down
We are professionals at falling. It’s our specialty. We can fall up a flight of stairs, getting out of bed, and even on flat surfaces. If there was an Olympic sport for falling, we would be gold medal winners for sure.

G – good days and bad days
We don’t plan them…they just happen. Some days are good, some are bad and others are downright terrible. That doesn’t change over the years so if you ask if we are feeling better we don’t know how to respond. How we feel can change from day to day, hour to hour and minute to minute. Feeling better? Compared to what? Yesterday? This morning? Ten minutes ago?

H – heat sensitivity
Trips to the beach on a hot summer day, time in a hot tub or sauna, or even blowdrying our hair causes our symptoms to worsen. Air conditioning is a must. We are thankful for its inventor and would give him an award if we could.

I – IV steroids
Oh, the dreaded round of IV meds. Most of the time they help to lessen the inflammation in our brain and spine, but they create such terrible insomnia while we are on them that we may end up scrubbing the floors, power washing the house, detailing the car and painting the basement. Just don’t look at us the wrong way because they also cause terrible mood swings and have the potential of turning us into the Incredible Hulk.

J – jitters
We make a great omelet and can whip those eggs to perfection with our hand tremors. If only we didn’t keep dropping the whisk in the process.

K – krazy mixed up words
Toss our vocabulary into a blender and let the words get chopped to bits. Now dump them out and try to form a sentence or even a word. At times that’s about how easy it is for us to find our words.

L – laughing through the tears
We cry and cry often (most of the time you don’t even know it), but we laugh too and many times you will find us laughing through the tears. That’s not a sign of weakness. Our tears are just some of our strength leaking out. But don’t worry, give us a hug, spend some time with us or help us out when we need it…that’s all we need to be replenished.

M – memory problems
Sometimes it’s hard to remember schedules, appointments, names and even what someone said 5 minutes ago. Thoughts get lost more than our car keys. If only we had a “clapper” to help us find them.

N – numbness
Many parts of our body go numb much like when someone crosses their legs and their foot falls asleep. Oddly enough, we feel pain through the numbness. If only we could get them to wake up. We would gladly offer them some caffeine or an energy drink if it would help.

O – oops, oh well
Asking us to catch something when you throw it to us, and us actually catching it…now that would be something to cheer about. See, we get excited over the little things.

P – pain and more pain
Our pain isn’t because we hit our thumb with a hammer. At least that kind of pain you could see. No, our pain shifts and changes throughout the day and at times can become unbearable. So much so that even wearing socks or covering up with a sheet in the bed hurts.

Q – quiet please
Loud noises can be super annoying and seem to become amplified in our heads, so if you see us sitting in the quiet…we like that. Loud parties, restaurants and get togethers are taken in moderation so we don’t overwhelm our nervous system.

R – relapses happen
It’s just a part of life with MS…it’s called a progressive disease for a reason. It may take years for a relapse to happen or only months…though we pray for it to be years.

S – swallowing difficulties
It’s amazing how many muscles and nerves coordinate to do something as simple as eating. One nerve out of whack and we could swallow wrong. It takes concentration and effort to chew and swallow. More than most people realize.

T – tingling
Pins and needles is what we call it and they don’t go away no matter how much we try to massage that area of our body. It’s something we learn to live with and try to ignore. But ignoring that kind of thing is about as easy as ignoring a spider crawling across your big toe.

U – UTI
No, that doesn’t stand for Under The Influence although we very well could be with all the meds we take. Our bladder causes us difficulties. It’s not something we like to talk about, but it is a reality of what we have to deal with. So when we say we have to go to the bathroom, don’t stop us. We may run you over in order to get there in time.

V – vertigo
We don’t need to buy a ticket for an ocean cruise, we have one in our head every day. If only we could get a few Hawaiian shirts, drinks with little umbrellas in them and an all you can eat bar to make it feel more festive.

W – wheels, canes and braces
Oh the fun we get to have pimping out our walkers, wheelchairs, canes and braces. Now if someone could invent a zapper that we could use on people when they are rude to us because of our disabled parking tags or slow moving we’d be in business.

X – X-rays and MRIs
The rat-tat-tat noise of an MRI machine can be slept through. We know that from experience. Our medical charts are filled with images of our insides. I guess you could call us Super Models…we are so photogenic.

Y – yawn, yawn, yawn
We have a constant yawn from the moment we wake up until the time we go to bed. Being able to wake up rested is a fairy tale from a land far, far away that no one has found yet. It must be around the corner from Neverland or next to the pot of gold at the end of the rainbow.

Z – zings down the spine
If you want to know what it feels like to stick your finger in a light socket, just ask. Looking down at our toes…zing, there it goes. A lightning bolt down the back of the neck and all the way to our toes. Maybe that’s what helps to light up the light bulb over our head when we get a bright idea.

Fight on, oh mighty warrior

Multiple Sclerosis is weird. You can wake up one morning feeling okay and the next wishing you didn’t wake up at all. It messes with your body, your emotions, your relationships, and your job. It has this way of touching every part your life.

MS is definitely not a disease you can keep to yourself. We try though…don’t we? I know I do. I try hard to keep it neatly contained in its own little space but it doesn’t seem to stay where I want it to.

If only people could see inside my life for a day and experience not just the physical symptoms of MS, but the emotional, relational, and financial challenges it brings along with it.

MS is something I wouldn’t wish on my worst enemy, but it is something I wish everyone could experience for a day so they would have a bit more understanding, compassion and patience with me. This way, when I’m having a bad day, I don’t have to work so hard trying to explain myself and having to convince people that my pain and struggles are real.

Today I woke up and my hands wouldn’t cooperate. The tremors were a bit more intense than I have experienced in times past. As a matter of fact, my entire body feels like an earthquake has exploded in 10 different directions. Nothing is working as it should. But I peck out my thoughts and send my heartfelt message of encouragement to you because I don’t want anyone to feel defeated or hopeless. I don’t want anyone to give up.

If I can do it, you can do it. We got this.

You are my hero because you fight battles every day that no one will ever see or know about. You wield your sword and fight gallantly even when your knees buckle under you and it’s hard to hold your head up. Never doubt, not for a moment, your strength because even on your weakest days you are strong.

Fight on, oh mighty warrior. Fight on!

Fight with me 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 progress 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 declaring the cure. Opinions without facts are not going to end MS. Some of the things you read about may help someone manage a few 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 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 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 my to-do lists and work with gusto. But more and more I find myself struggling and needing your help to 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 your support, love and care not your 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.

Living with a chronic illness can be extremely lonely

I think one of the hardest things about living with a chronic illness is the pressure from certain 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 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 shopping 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 a chronic illness is to allow them to decide how they’re actually feeling and what they are capable of doing. I like it when people leave it up to me to decide what I can and can’t do, and are okay with my decision. After all, it’s my body…it’s my life. I should now how I’m feeling.

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 a chronic illness 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.

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 a virtual hug your way today.

Broken but still standing

I know how difficult things can get. It’s not easy making it through the day when my body is screaming at 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 suppose 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 who 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 breaks.

The truth is, Multiple Sclerosis changes you. It leaves scars both in your brain and spine, but also 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 a slew of symptoms. 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 and the sun will come out.

Hold on with everything you’ve got, then when you find your strength again…stand proud of what you’ve come through and all you’ve overcome. You may look tattered and worn, but you are still standing. That, my friend, is how warriors are made.

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 can tell.

I never thought I would be living with a chronic illness

I never once thought I would be in my 40’s living with a chronic illness, surviving on Social Security because my disease progression forced me out of a career I loved, staying home much of the time because of mobility and accessibility difficulties, requiring regular visits from a home healthcare nurse to help me manage everyday life, and losing friends left and right.

My plans were so much bigger than that.

I dreamed of greatness. I was going places. I was doing things. I had arrived.

It’s important for everyone to understand that our journey in life can change at any given moment…for the good or for the bad. It will be filled with victories and defeats. It will twist and wind through the mountains as well as plummet into sink holes and ravines.

Yes, the journey is important. It’s great to have goals and plans, to be able to reach for something bigger than yourself, to dream. But what I have found to be even more important than winning and losing, bigger than the highs and lows in life, is learning how to handle those victories and disappointments. That’s what matters. It’s not the actual winning or losing that counts, it’s how you win or lose.

I grew up in a huge football town. We took winning seriously and losing hard. When our team won we would have victory parties in the town square with everyone excited and partying through the night. When we lost, although the atmosphere would be more solemn and there would be a lack of cheers through the crowd, we still gathered and celebrated in our loss.

I learned how to win big and lose gracefully.

So when life threw me a curve ball and brought an end to everything that I thought was wonderful, instead of screaming “Why me?” or becoming bitter and angry at the dramatic change, I shifted with the change to find something to celebrate…even in my loss.

Sure, I lost my mobility, strength, career and many friends, but I gained something through it all. I found hope in the darkness. I developed strength out of weakness. I learned how to smile in the pain.

How did I do that?

I decided that regardless of the disease that is ravaging my body and changing my life, that I would find something each day to be grateful for. It may be something little and at times minuscule, but it’s still something.

Today I’m grateful that I woke up to clear skies, birds singing outside my window and a fresh cup of coffee to be able to sip on as I write to you. I wish it was something more than that like I won the lottery or multiple sclerosis was cured while I slept, but I’ll take what I can get.

There is always something to celebrate in a day. Find yours and choose to rejoice in the small victories rather than wallow in the defeats…even if you find yourself lying in a hospital bed, sitting alone on the couch or trudging through rush-hour traffic.

Hold your head high and know that regardless of the speed bumps, the pitfalls and the unexpected turns, you can still find joy in the journey if you look hard enough.