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

 

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

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

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

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

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

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

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

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

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

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

MS Gets on My NervesMS WarriorMS Superhero

 

internet chat

My multiple sclerosis brain fog moments

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

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

FRIEND: uhhh…a pen? a glass of water?

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

FRIEND: Nail clippers? Scissors? Paperclip?

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

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

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

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

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

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

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

MS Gets on My NervesMS WarriorMS Superhero

 

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

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

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

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

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

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

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

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

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

MS Gets on My NervesMS WarriorMS Superhero

 

broken heart

A multiple sclerosis broken heart really happens

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

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

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

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

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

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

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

MS Gets on My NervesMS WarriorMS Superhero