Real life with multiple sclerosis

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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 has come around, 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.
  • I want to see the daily struggle MSers experience.
  • I want to know about the problems, the large and the small.
  • 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 MSers face.
  • I want to hear about the embarrassing moments that are endured.
  • I want to know of the emotional chaos MSers go through every single day.

That’s real life with MS.

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.

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

Creating a balanced MS Life

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I’ve always heard that balance in life is essential. I have a feeling the person who originally penned that thought didn’t have multiple sclerosis. I can no more balance my body on a flat surface than my life on a daily basis. I can’t even balance my check book due to the financial strain of living with a chronic illness. A balanced life with MS sounds more like an oxymoron than a reality.

How do you balance a life that is constantly changing and where the unexpected is more expected than the chance of rain in today’s weather forecast? Each day with MS is an irregular experience filled with obstacles and booby traps. How do you balance a life like that?

I gave up trying to plan my day in advance. Before MS, I was an organized, planned individual with my day planner in hand everywhere I went and a memory like an elephant. I remembered birthdays, holidays, anniversaries, and special occasions. I could remember anything I read, heard or saw. I even earned the nickname “Human Google” and was the go-to person when someone had a question.

Now, I have a hard time remembering what day it is, what I did yesterday and what the name of the main characters are in ‘Friends’. I burn pizza in the oven, lose my way driving to the grocery store and forget to wash the shampoo out of my hair while I’m in the shower. You have no idea how many times I have gotten out of the shower, dried myself off, then realized my hair was still sudsy. Even my no-fail plans to remember things don’t help me remember. I lose post-it notes, forget to set alarms and can’t comprehend my own text messages to myself.

It would be wonderful to know what a day will be like: to plan and be able to keep those plans, to go to parties without leaving early, to spend time with friends without falling asleep on them, to spring clean the house without regretting it later, or even to wash and detail the car without dropping the wash rag every few minutes.

Even though I have trouble doing some of the simplest of things in life, I try to do them anyway…and that’s what counts. I try to do as much as I can when I can and leave the rest to tomorrow.

Because of MS, I have learned that balance has nothing to do with ensuring equal time with work, fun, and family. It’s not about pleasing others or how much I can get done in a day. It’s about going with the flow and doing those things that are important to my wellness. Sometimes that means I spend the day focused on my own needs instead of work, family or fun. Sometimes that means I can mix it all up. But the important thing is to never give up when the unexpected happens.

It’s okay to end your day differently than you expected, leaving things still to be done. Don’t get frustrated because your house needs to be vacuumed and you don’t have the energy to do it at the moment. I don’t know of anyone with an un-vacuumed house that has stopped the world from existing thus ending civilization as we know it. Your day will go on and the vacuuming can wait for another day. The same goes for laundry.

Choose the important things in life to be your focus rather than the things of little importance. I’ve learned that many of the things that I thought were important really weren’t. Use your time wisely and know that YOU are what’s important, not what you can or cannot do.

And never forget, even the greatest gymnast in the world falls off the balance beam from time to time so don’t stress out when your emotions get the best of you and you become overwhelmed with everything happening around you. Just take a deep breath, get back up and keep trying. Don’t hold onto the stress that comes with all the daily unexpected moments. Instead, hold onto the smiles you find in the moment and keep going. You got this!

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.

I know what it’s like to be chronically tired

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At the end of an exhausting day yesterday, I collapsed into my bed and tried to sleep. You know, that thing where you curl up, close your eyes, snore and drool? Unfortunately, it didn’t work out for me last night.

I spent the entire time awake through the yawns. I even tried counting sheep but they were no help. I think they actually went to sleep without me because at some point in the night I ran out of sheep to count. Now, here I am still awake at 5:30 AM watching the sun come up and wondering how I’m going to get through my already exhausting day.

Just so you know…

  • I know what it’s like to lie down in the bed at the end of the day only to watch the clock as the minutes tick by with each passing hour.
  • I know about those moments you ‘re about to drift off to sleep when your brain suddenly gets this weird burst of energy and decides to wake up and ponder everything ponderable.
  • I know the feeling of frustration and discouragement when MS seems to be winning the battle with sleep as muscle spasms, tremors and pain relentlessly pulse through your body.
  • I know what it’s like to not be able to sleep even with medications and supplements promoted to help you sleep.
  • I know what it’s like to drag yourself out of bed in the morning so exhausted, and with your muscles so tight, that you can’t move gracefully…or even at all.
  • I know how it feels to stumble into the kitchen to start your day when your entire body feels like you woke up with a hangover times ten.
  • I know how hard it is to put a smile on your face when you at greeted by a cheery “good morning” from your spouse, child or hungry dog.
  • I know what it’s like to think to yourself day in and day out, “If only I could sleep through the night, life would be so much better.”

I know what it’s like to be chronically tired.

I can’t promise you that you will ever feel completely rested when you get out of bed each morning even if you’ve slept through the night, but I can promise you that you will make it through your exhausting day… eventually, minute by minute, step by step.

Hang in there today. You’re doing great, even if you are too tired to see it. Living with multiple sclerosis is truly exhausting but you will make it through your day. Even though you don’t believe it, you will be stronger for it.

Welcome the day and hang in there moving little by little until you’re able to push through the pain, tremors, muscle weakness and even the negative thoughts that have a tendency to show up out of nowhere. It’s going to be a good day. Cheer up. I just know it.