brave

People may never see your struggle with multiple sclerosis…you are brave even then

The first thing I do every morning is pour myself a cup of coffee and sit in my favorite chair with my laptop to write my morning thoughts for you. If someone would have told me several years ago that my thoughts about my life with multiple sclerosis would be read by people all around the world, I would have probably looked at them crosseyed and lopsided.

I never imagined that my words, put together so early in the morning, would matter…let alone make sense. Yet somehow they come together and bring hope to all who read them.

Today, I feel such amazing and unbelievable thankfulness for you. On days when I’m struggling, just knowing that you are sitting there across the miles reading my rambling words, tender encouragement and quirky sarcasm, warms my heart and gives me a smile that makes each day worth waking up to.

I smile because I know that there’s someone else out there just like me. Someone who at times feels overwhelmed, sad, exhausted, and alone but, who just like me, puts their brave on and greets the day with determination and courage. No one will ever fully understand the battles we face each day and the uncertainties we deal with, many before we even pull back the covers to get out of bed.

People will never hear the arguments I have with myself as I look over the list of things needing to be done in the day knowing full well that my body is ready to collapse. They will never understand the strength it takes to hold on when I’m feeling beaten down and worn out. They will never see the tears that leak through the smile I’ve carefully put in place. They will never know of the ache in my heart as I have to cancel plans I was looking forward to being a part of. They will never grasp the full extent of the challenges I face moving around in a world that is not fully accessible to someone in a wheelchair.

Some days are good and some, to be honest, are downright terrible, but knowing that others are facing similar challenges makes the load considerably lighter, and my world seems a bit less crazy and more manageable.

If there is one thing I could say to you today that will help bring some ease to your heart and the struggle you are facing, it’s this…

You are an incredible, amazing, beautiful individual with a future still ahead of you that is filled with endless possibilities. Your life hasn’t ended because of MS or because of the progression you are experiencing.

I know at times you think that things are over for you, but you really do have great moments ahead that need to be experienced and that you are to be a part of. Many of them are even things that you haven’t even dreamed of yet. Good things. Great things. Amazing things. And one day you will look back on today and be thankful that you kept fighting.

You are brave, even when you don’t feel like it. Even when you are weak and tired. Even when all you can see in front of you is a life filled with uncertainties, struggles and pain. You are brave even then.

MS Gets on My NervesMS WarriorMS Superhero

 

Sometimes living with multiple sclerosis…all I can do is sit and cry

I remember as a kid taking time to lie in the grass, look up at the sky and discover a world of cloud shaped wonders. Once I saw a bunny eat an elephant, then it pooped out a bear. It seems the impossible can happen with a little bit of imagination and a sky full of clouds. I mean, who ever heard of a bunny eating an elephant before? But I saw it happen right before my very eyes.

Those carefree times don’t happen so much any more. I’m not as prone to pause life to look up at the sky in search of familiar shapes…but I should. I should slow down to enjoy life more and to allow myself to be me. We all should. Do you realize this very moment can never be refunded or returned? It has to be used as is, right now.

That’s not always so easy to do when dealing with a chronic illness. Especially when the challenges facing you seem bigger than life itself. The weakness in my legs and right arm have increased by a gazillion times over the past month. I am finding it harder and harder to hold onto things and the pain that accompanies the muscle tightness in my legs is killer. Like scream-as-loud-as-you-can-because-it-hurts pain. I do believe in allowing yourself the freedom to express your emotions whether they be tears, laughter or screams.

I remember one day sitting in my car in the parking lot at the grocery store screaming. I was still able to walk, but by time I had finished shopping and made my way back to the car, I was so weak that all I could do was sit and scream. So I did. I’m sure the shoppers passing by thought I was completely nuts. But I didn’t care. It helped me vent my frustrations. Then I took a deep breath, wiped away the tears and drove home feeling much better.

When facing difficult times, I have found some of my most therapeutic moments have been when I have taken the time to pause and allow myself to simply be. To allow the emotions to spill out for a moment, then take time to notice life like I did as a child. To look around at all the wonder that there truly is in life. To enjoy the tiny little kisses life gives us: the flowers swaying in the wind, the sound of children laughing, the smell of a freshly cut lawn. There’s a pause button in every day, you just have to choose to use it.

No matter what you are facing, whether it be difficulties in your marriage, relationship troubles, problems at work, stress over finances, or simply having an “MS is kicking my butt” kind of day…pause and take time to simply be! Twenty minutes…that’s all you need…just twenty minutes to yourself. Those twenty minutes will be worth the investment. Trust me.

Now I’m off to spend some time curled up in my favorite chair as I sip some coffee and watch the sun come up. It’s a new day filled with new possibilities.

What’s sick supposed to look like?

Could someone please tell me what sick is supposed to look like. I am apparently doing it all wrong. It’s amazing how many people tell me that I look good. I don’t know whether to be grateful that they care or sad that they don’t even attempt to understand my struggle. My outside is nothing but a costume covering a body filled with chaos. I must be wearing it well.

If you could take a look at my insides, my body is screaming at me all day long. From the moment I wake up until the time I go to bed I fight a battle. Sometimes I receive blows that send me toppling to the floor. Sometimes I hurt. Sometimes I cry. And sometimes I laugh so hard that I hurt and cry all at the same time. It’s not an easy existence, that’s for sure.

I don’t think the world will ever understand what we go through from the moment we wake up until the time we go to bed. Right now I am sitting on the couch hoping for the vertigo spinning in my head to find a place of calm, for my thoughts to collect themselves, for my hands to stop trembling, for my eyesight to see the world around me clearly, and for my body to gain some strength. There must be an energy zapper in my house somewhere but I can’t seem to find it.

When you are surrounded by people who just don’t get it, don’t lose heart. At times, multiple sclerosis can be a lonely disease to deal with. I hope you know that you aren’t alone in this fight. We are all in this together.

Take any hurtful comments people have made about how you should be living with MS and toss them to the side. Unless they are living in your body they just won’t get it. Don’t hold it against them. Most of the time I don’t get MS either, and I live with it.

Hold your head high today, that’s the only thing you need to be carrying…and wear it well. I’m proud of you.

MS Gets on My NervesMS WarriorMS Superhero

 

I can’t go through life pretending that everything is okay

This is the truth…the raw truth of a person living with multiple sclerosis. I can’t pretend that everything is okay, because the truth is, it’s not. Let’s get this out in the open instead of constantly whispering about it in the shadows. I am living with a chronic illness. There is no magic cure and no way of knowing how it will affect me in the years to come.

There are too many fake people out there with their fake solutions, fake cures and fake help. You know it and I know it. That’s just too much fakery for me. I prefer being real even if it’s not very popular.

MS is not my fault. I didn’t cause it by the way I eat or the things I do. It’s not payback either for the things I’ve done in my past no matter how bad they may have been. MS picked me out of a crowded room and decided I was the one it wanted to live with. I had no choice in the matter.

The choices I do have are in what methods I decide to pursue in dealing with this illness. It’s my choice though, not yours. Just like this is my body and my life, I am the one making the choices in the way I will seek treatment.

You have your own hardships and struggles to face. I’m sure you wouldn’t like me getting into your business and matter-of-factly pointing out everything you need to be doing regardless of if I even know what I’m talking about.  I’m not here to tell you how to live your life by giving you step by step solutions to all your troubles, so please stop judging me for how I live mine.

It hurts when people refuse to accept my diagnosis. MS is hard enough as it is, I don’t need finger pointing and constant “if you only” statements being thrown around. Can we be honest about everything? Can we acknowledge that MS is real in my life. Can we face this together so I don’t have to face it alone?

I may be strong, but I’m not bulletproof. I keep going because MS has made me a stronger and better person, but that doesn’t mean I don’t hurt. The truth is I get scared, fail, struggle and even break. I don’t give up though. Nope…not me. I’m a fighter by choice and will keep fighting every day that I live. That’s the truth of my life. Will you stand with me in the fight?

MS Gets on My NervesMS WarriorMS Superhero

 

When you have to think to swallow

One of the scarier moments for me in this life with multiple sclerosis is when my throat closes up and refused to allow me to swallow. Many times I have to actually convince those muscles to actually function. Last night was one of those times.

I had a cup of water by my bedside, elevated the head of my hospital bed, reached over for my drink and took a sip. That was when things went sideways. I attempted to swallow but nothing seemed to happen. The muscles in my throat just wouldn’t move. It took me about 2 minutes to get my body to cooperate. I came so close to just spitting everything out and calling it a day.

The hardest time is when something in my mouth goes down the wrong way and I end up having a coughing fit. I have noticed that water is sometimes too thin of a liquid for me to deal with. If the drink has a little bit of a texture or thickness to it, I do much better. Things like orange juice, a smoothie, a milkshake and even a cup of coffee with creamer work better for me.

And people wonder why we are always so exhausted. Maybe it’s because we have to work overtime all day long in order to do the things everyone else takes for granted. When you have to think to walk, think to swallow, think to remember words, think to even scratch your nose…well, that’s a lot of exhaustive thinking and would wear out even the healthiest person around.

I wish there was a switch I could flip to make my muscles work as they were intended or a program I could write to override the glitches in my system. That would make my days so much easier to manage and would be a welcomed improvement.

My morning coffee is not as enjoyable as it used to be but I still make myself a cup each morning anyway. Sometimes I don’t get it all down and end up pouring half of it down the drain…but sometimes I don’t. This morning I finished my cup and for that I’m thankful. It’s the little things in life that really matter anyway.

Life has drastically changed because of multiple sclerosis but I will never give up looking for sunshine in the clouds. This morning I found a rainbow in my coffee cup, tomorrow maybe I will find one in the laundry. Hey, anything’s possible!

MS Gets on My NervesMS WarriorMS Superhero

 

Yes I have multiple sclerosis and yes I still laugh

When terrible things happen, one of the first things to disappear in the chaos is laughter. Somehow all the smiles and giggles that once filled the day get tossed to the wind and pushed aside due to things like fear, anger, sadness and worries.

For many people, laughter just doesn’t fit in with all that’s happening in their crazy, mixed up world. I mean, how can anyone laugh when their life is falling apart? It just seems impossible…absurd…oh, so wrong.

Laughing does not mean a person is ignoring their reality. It does not mean they are being careless, ignorant or naive. It just means that they are putting down all those weighty, life altering thoughts for awhile in order to rest and build up the strength needed for the upcoming fight.

No one knows how long a difficult time will last when it comes to multiple sclerosis. It could be hours, days, years, or a lifetime, and laughter is one of those things that simply makes the steps lighter and easier to make. I, myself, have been known to laugh through my tears. That’s kind of like those times when it’s raining outside while the sun is still shining. Seems impossible, but it happens.

Over the years living with MS, I have discovered that laughter is the very thing, the glue, that holds life together when tragedy strikes. I laugh when I fall, flub up words, have accidents, run into things, confuse my thoughts and even when I forget appointments. If I didn’t laugh I would be crying…and crying takes way too much effort.

Laughter is important. It’s needed. It’s what puts that little bit of sanity into the insane. It brings out the rainbows and butterflies, and chases away the clouds. It seems that once laughter is gone, all else falls apart so much faster and harder.

Never apologize for laughing and don’t ever feel guilty for enjoying life in the struggle. The person that can enjoy the journey regardless of the potholes, ditches and mud puddles is a rare breed. Be that rare breed.

Don’t let the things you are facing today take away your ability to laugh. Wear a smile through the tears, go against the flow and allow yourself to laugh, really laugh…and keep on laughing. It truly does the body good.

MS Gets on My NervesMS WarriorMS Superhero

 

Sometimes a life with multiple sclerosis can feel like everything is falling apart

A life with Multiple Sclerosis can be a physically challenging, emotionally draining, around-the-clock exhausting and makes for some extremely lonely times. Someone without MS may wonder why that is.

Well, everything we do takes an extraordinary amount of effort to complete and some things become nearly impossible to do. Try going through a day not knowing if you will be able to manage another moment of relentless fatigue, dizziness, muscle weakness, bathroom mishaps, dropping of anything you get your hands on, lots and lots of pain, and feeling as if you don’t have the strength to hold it together for one more second.

I want you to know that no matter what you are facing today or how difficult things become tomorrow…you are not alone! There’s an army of us warriors standing shoulder to shoulder, together in this fight.

If you cried in the shower this morning because you were so unbelievably overwhelmed with the load you have to carry and feel as if the whole world has flipped upside down, inside-out and turned up on its end…you are not alone. Somebody else cried, too.

If you find yourself staring at piles of laundry, a sink full of dishes, shoes tossed in the hallway, unmade beds, dirty toilets and are fighting the guilt of the day coming to an end with everything still in the same place it was when you woke up…and then you find yourself wondering “what did I do today?”…you are not alone. Somebody else wondered, too.

If you miss running with your kids, attending graduation parties and baby showers, standing in long lines waiting for tickets to the best show on earth, and joining in on all the fun everyone else seems to be enjoying…you are not alone. Somebody else misses it, too.

If you woke up exhausted after a full night of rest and are trudging through your day longing to go back to bed so you can sleep a little bit longer…you are not alone. Somebody else did, too.

If you wished you could still be part of the buzz around an office, the business of deadlines and bad morning coffee, cranky bosses, nosey employees and water cooler gossip…you are not alone. Somebody else wished it, too.

Maybe not every person’s experiences with MS are the same and the difficulties you face are different from mine, but I am convinced there is someone, somewhere in the world who is going through the same overwhelming moments as you. Just because you don’t hear about them or know them personally doesn’t mean they don’t exist.

It’s okay to feel as if you’re falling apart because in many ways you are…well, your nerves are so I guess that’s the same thing since they are a part of you. Eventually things will get better and you will find new ways of coping with all the changes happening in your life, I can guarantee you that, but in the moment or in the heat of the battle it may not seem like it’s even possible.

Right now the days may seem long and the pain may outweigh the joys. It’s tough…I get it, but it’s not impossible. Let’s carry this burden together. Let’s offer a listening ear, a gentle hug or a nod of understanding to those beside us. We need each other. That’s how our strength grows.

It’s okay to ask for help and to talk with your doctor about ways to help you manage the emotional chaos you find yourself in. Don’t try to go this alone. Hang in there. There is still hope for a better tomorrow. I believe in you even when you don’t believe in yourself. You are going to get through this. Take a deep breath, shake off the gloomy’s, hold your head up, and don’t be too ashamed to reach out for help. We all need a helping hand.

MS Gets on My NervesMS WarriorMS Superhero

 

Sometimes because of multiple sclerosis I have a hard time staying focused

I was making a shopping list the other day and forgot how to spell the word pencils. In my mind it didn’t even have the letter c anywhere in it. I struggled for nearly five minutes thinking and thinking and then thinking some more about that silly little word. The more I thought about it, the weirder the word became.

It wasn’t as if I was dealing with something complicated like the word prospicience or eudaemonic. Now don’t be too proud of me, I didn’t know those words either until I searched Google for hard to spell words, and I still don’t know what they mean. Auto correct didn’t even like the first word.

My brain has lost most of its ability to think deep and stay focused on something for an extended period of time. I rely more and more on technology, friends and good ole post-it notes with each passing day to help me stay somewhat organized.

It used to make me upset that things were changing so much. It frustrated me more than anything else going on, but I’ve learned to not rely on my feelings too much. They have a tendency to mess me up. Don’t get me wrong, I still have moments when I tear up because the reality of my life becomes a bit too overwhelming, just like the other day while making my shopping list. I sat and cried over a word. A word?! Who cries over a word?

Silly, I know…but I have found that we all need a good cry every now and then. It’s not weak to cry. It’s not a sign of giving in, giving up or letting MS take over. It’s simply a pause in life to refocus and let go of the stresses, fears and pain that have had time to build up. Besides, we all know what can happen when you don’t relieve the pressure from a building volcano or a backed up water hose, right? They explode!

Don’t be too hard on yourself when you break down sobbing in the shower, after getting in the car from a trip to the store that wiped you out, or even because of brain fog moments. Give yourself time to cry, to feel. The most beautiful rainbows I have ever seen have been after a rainstorm, so just imagine the beauty that you will see after the tears. Keep shining, keep hoping, keep going.

MS Gets on My NervesMS WarriorMS Superhero

 

When you feel like giving up…

When everything seems to be falling apart and the struggle to simply get out of bed becomes a monumental feat.
When the tears flow, the anger rises, and fears take hold of your day.
When the fatigue becomes overwhelming.
When you feel all alone because no one understands how hard even the simplest of things can be.
When your bladder fails you in public.
When your legs unexpectedly give way.
When the floor becomes the enemy and then your friend as you hug out your frustrations together.
When your vision blurs, your muscles twitch and your hands can’t even hold a cup of water.
When the pain becomes unbearable.
When your career ends and even your passions begin to slowly fade away.
When multiple sclerosis steals your joy and hides your laughter.
When the uncertainty of tomorrow becomes so great that even you don’t know how to overcome the worry.
When all seems lost, dark and dreary.

When you feel like giving up…don’t!

Find something in the middle of all the chaos that brings you comfort whether it’s a fuzzy blanket to snuggle with, a friend to sit with, or your favorite song to listen to. Allow yourself time to vent and time to cry. It’s really okay to do that.

There’s nothing wrong with allowing yourself to feel. You’re human. You have real life struggles going on. Letting out all that built up emotion is necessary to allow the steam out and avoid an explosion.

But when you’re done with your screaming, crying and punching—when you have no voice left and no more tears remain—weed through all the mess in your life and find a smile. You know, that thing where the corners of your mouth turn upward and at times even a giggle seeps out? Yeah…that thing.

Put on the funniest movie you know of and laugh…hard. Remember a funny story from days gone by. Talk with a friend and allow yourself the chance to enjoy the moment. Laugh yourself through the pain, frustrations and fears.

Laughter is amazingly powerful. It has this way of pulling you out of the deepest of pits and lifting you up. It can cause your belly to ache and your ribs to hurt, but that kind of pain is worth it. Laughter lightens the air around you and gives you the ability to fly.

Soar with the eagles today. Find your smile, grab onto a laugh and spread your wings. On this day, today…you can’t give up.

MS Gets on My NervesMS WarriorMS Superhero

 

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