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

 

My multiple sclerosis life is filled with the unexpected

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 balance 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 a walk into the unknown filled with countless obstacles and booby traps. How do you balance 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 happened on the last episode of “Game of Thrones.” I burn pizza in the oven, lose my way driving to the grocery store and forget to wash my hair while I’m in the shower. I have even been known to forget to wash the lathered up shampoo from my head before I end my shower altogether. You have no idea how many times I have gotten out of the shower, dried myself off, then realized I need to rinse the shampoo out my hair. 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 read my own writing.

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.

And never forget, even the greatest gymnast in the world falls off the balance beam from time to time. Don’t stress out when your emotions get the best of you or get overwhelmed with everything that’s happening in your life. When the unexpected happens, pause, take a deep breath, then get back up and keep trying. Don’t hold onto the stress that comes with all the crazy unexpected moments. Instead, find a few smiles somewhere in the chaos to help you through what’s going on and keep going. You got this!

MS Gets on My NervesMS WarriorMS Superhero

 

I’m beyond exhausted

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 exhausted 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 are 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 and pain relentlessly pulse through your body.
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 and you will be stronger for it.

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

 

Why I do what I do for people with multiple sclerosis?

In the past month, I have been approached by two different companies to join in with them in order to reach more people living with multiple sclerosis. That sounds great, doesn’t it? I mean, that’s what I want to do. I want to touch as many people living with MS as possible with a message of hope, help and encouragement. Go for it you say, right?!

The problem is, in digging further into both of these businesses, I discovered that they make a profit by selling their customer data. Everything you do on their sites from talking with others, to plugging in the meds you take, to sharing your symptoms and difficulties is collected and sold off for their gain to pharmaceutical companies and research. That doesn’t sit well with me. I value the trust you have in me too much to get involved in things like that.

For me, it’s all about integrity. Everything I do, I do for you. I have you in mind from the moment I wake up to the time I go to bed. Not thinking about how I can make a few bucks off of you, but how I can make you smile or ease the burden you carry. That burden is heavy. I know because I’m right there with you walking this MS journey too.

When you stop by my online store and buy a shirt or send in a donation, that helps me to cover the costs of running this website. It never covers it fully, but I don’t care. Has someone been helped because of something I posted or said? That’s what matters to me. That’s all that matters to me. You matter to me.

I know today’s post is a bit different than usual, but I wanted you to know how important you are to me. It’s a messed up world out there but I have chosen not to get messed up with it.

If you are hurting today, I am sending you a virtual hug from me to you {{{{{{{{hug}}}}}}}}. If you are weary and tired, hang in there. You will make it through this time. If you are engulfed in stormy clouds and torrential rains, hunker down and take a break. It’s okay to pause, and I can guarantee you the sun will shine again.

Keep this in mind as you go throughout your day: When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something’s suffered damage and has a history it becomes more beautiful.

You may see a life of damage before you but I see someone who is gorgeous even in your brokenness.

MS Gets on My NervesMS WarriorMS Superhero

 

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