My topsy-turvy Multiple Sclerosis world

I live in a snow globe kind of world. The wind doesn’t blow and the rain doesn’t fall. Instead, the earth shakes and everything flips upside-down, right-side up, then upside-down again. The torrential swirls that are created sends shockwaves throughout my world and threatens to topple anything that isn’t nailed down.

Watching the flakes of snow slowly settling across the trees is the only moment of calm I seem to have. It is such a welcomed peace too and gives me the time I need to catch my breath before the shaking starts yet again.

I’ve tried to surf through the shakes and swirls. Some days I do pretty good at it too. Other times I wipe out at the first sign of a wave heading my way. Yesterday, I think I wiped out before the wave even started. I hate those kinds of days. Days where the tears flow more freely than smiles.

We all have days like that. I probably cried a bucket of tears, maybe even a bathtub full…I wasn’t measuring, but it was a lot. Being overwhelmed by life happens to us all. MS has the ability to do that to us quickly too. I can get overwhelmed just stepping out of bed in the morning. Now that takes great skill!

I couldn’t tell you why I was crying yesterday. I still don’t know why myself. I actually had a pretty good day. I made it to my appointments, got an updated prescription of muscle relaxers which is so important for me to help with the crazy spasticity in my muscles, and even made it to the grocery store for some much needed snacks. Even with all of that, somehow every fiber and cell in my body was screaming at me and the only way to release the pressure was through tears.

I hate days like that. But they happen even to the best of us. We can’t blame everything on MS, but for many of us our emotions are drastically affected by the imbalance in our brains and we can’t seem to control the tears, the laughter, or the shifts in our emotions. That’s hard to get used to or even to grasp the concept of.

But today…today is a new day. There have been no upside-down flips as of yet. For that I’m thankful. My suggestion, go with the flow. Ride out the swirls and the waves…and hang on tight. Some days can be really crazy, but you always make it. You always get through the upside-down, right-side up topsy-turvy moments.

Now, will someone see if they can superglue, nail or cement my snow globe to the table? No more flips today…please!

You are braver than you think

I took a speech class when I was in college to help me when speaking before crowds of people. It did help, but not how you might think. I never gained the confidence to fearlessly address people, I simply learned how to do it afraid. To this day I still tremble inside when standing before a large group of people, but my stomach being full of butterflies is something only I notice. Others can’t see that my palms are sweaty, my mind is racing and my knees are knocking. To them, I’m confident and brave.

The thing I noticed about bravery is that it feels like fear, but looks like courage. To everyone else, you appear confident, fearless and heroic, but on the inside you feel nauseous, shaky, and hesitant. You feel as if you are going to melt into a puddle on the floor. I’m so glad that even though I feel as if I’m about to fall apart, I don’t.

Yesterday my bravery was tested. I woke up to a new multiple sclerosis symptom that is not very common but does happen. I made my way into the bathroom for my normal morning routine to brush my hair and my teeth and noticed that the right side of my face was drooping. My right eye won’t open fully and the corner of my mouth is pulled tight almost as if a piece of invisible tape is stuck to it pulling it towards my ear. I tried massaging the muscle with my hand but nothing I did seemed to help. I even upped my muscle relaxers. No change.

I am currently on a round of steroids to help correct things but it may take a week or so for me to actually see any positive change. I’m believing for the best even while I’m scared half out of my wits at my current new normal.

Think back at the times you wanted to quit because you were scared. You kept going even though you were unsure of how things would work out. You were brave. You chose to do the very thing that scared you regardless of how much your heart was racing or the fact that you wanted to give up. You chose to do it afraid.

Everything we do in life has some risk involved. Life itself is full of risks. The moment you get out of bed you are stepping into the unknown, and that can be scary. Some days more so than others, but scary nonetheless.

When I think about what it means to be brave, I think about being afraid but doing it anyway. I think about the times I wanted to quit, but chose to keep going. Each day you venture out into the unknown…afraid…afraid of what the day may hold or of what tomorrow may bring. Your knees are knocking, your palms are sweaty, you heart is trembling, fearful and uncertain, but you do it anyway…you are brave.

Bravery isn’t a pill you can take along with your handful of vitamins and meds each day. It’s not a matter of never being afraid. It means pushing through your fears. You are brave whether you feel like it or not when you simply keep going. Remember all the things you’ve overcome, the challenges you’ve faced, the crazy MS symptoms you’ve pushed through…you were brave then, you can be brave again.

A strange thing happened in my life with multiple sclerosis

One multiple sclerosis symptom that is super annoying for me is this crazy fluttering sound that is constantly happening in my right ear. The best way for me to describe what it sounds like is those times when you get water trapped in your ears and as you work to get the water out a fluttering sound pulses throughout your ear canal. That or those times when you are flying on an airplane and the air pressure changes trigger a flutter. You usual can remedy the problem by chewing gum or yawning.

The problem with the fluttering sound for me is that it never goes away. No amount of shaking, poking, yawning, massaging or chewing seems to work. And of all things, loud noises seem to get amplified in my head almost as if a megaphone is blasting sound directly into my ear.

A few other strange symptoms…

  • The MS hug which is more like a constant bear hug or a girdle that is so tight that you have trouble breathing.
  • Muscle twitches that happen spontaneously and without warning. I have been know to involuntarily kick things, throw a coffee cup across the room, and hit someone sitting beside me for no reason.
  • Brain fog moments that can make conversations with me not just strange but entertaining as well. Sometimes talking with me ends up becoming a game of charades.
  • Uncontrollable itching for no apparent reason whatsoever. No mosquito bites, poison oak or allergy to the dust in the air.
  • Mixed up emotions…yes it’s real. I have been known to cry for no reason, laugh at inappropriate times and be sad even when things happening in my life are good.
  • Tastebud confusion really happens. I sometimes can’t properly taste the food I just cooked to know if I have put enough salt in or if I over spiced the chili.

What a crazy mixed up disease multiple sclerosis can be. And that’s just a few of the weird things I am able to think of at the moment. I’m sure there are more, I just can’t remember what they are this early in the morning.

Know that you are not going crazy when strange things happen. It could be MS or it could just be your body being rebellious. Maybe I’ve been abducted by aliens and they are testing my sanity. Do I need to get a tinfoil hat? Maybe I already have one I just don’t remember where I put it.

Multiple Sclerosis…a life of the unexpected

We live in a world full of “I want it now” kind of people and “it can’t wait” situations. How do you keep from creating a multiple sclerosis exacerbation in that kind of world.

Maybe your day starts something like this…

You wake up in the morning to a busy day planned. You didn’t hear the alarm clock earlier so you are already being rushed to get your day started. It’s early, you’re exhausted and your body isn’t cooperating. You take a shower, and even though you did every cool down technique you know, your body is simply too weak to keep going at the fast pace you set for yourself. The shower you just took requires you to rest…and your day hasn’t even started yet.

You then push on to get dressed so you can get out the door to make up for missed time. All the while, playing through your head is a rundown of everything you must do today. You have lists created, app alarms set on your phone to remind you of your time constraints and post-it notes scattered everywhere.

You do your best to hold back your frustrations but before you have even left the house to begin the day, you are feeling overwhelmed and defeated. Somehow MS just doesn’t fit into a busy day and somehow I always seem to forget that tiny little fact.

The unexpected happens much more often now that MS is a part of my world. I get tired faster, weak muscles limit my functionality, my vision messes with my ability to complete even the simplest of tasks, dizziness and vertigo trip me up, and my thinking gets all muddled in the process. It’s hard planning for the MS unexpected. I always say a life with multiple sclerosis is like a box of chocolates…you never know what you’re gonna get. (Thanks Forest Gump for the inspiration.)

So how do you fit a life with MS and all the unexpected things that come with it into your world? Well, for me that’s an impossibility. It seems MS doesn’t like plans, schedules or limits. It kind of has a mind of its own and doesn’t seem to want me to know ahead of time what it has in store for my day.

When life become overwhelming, and many times even before it gets to that point, I find that I need to take a moment to step back from all my commitments, work, and obligations. I need to take a moment to pause and re-examine everything in my life. Literally.

Is there anything I could change or remove from my day that would help ease the load? Do I really need to vacuum the house today, tomorrow or even next week? If I wait and take a shower before I go to bed rather than when I get up in the morning, will it help? Can I recruit someone to pick up a few things from the store for me so I don’t have to go? Will my world fall apart if the laundry isn’t finished? Can today’s dinner be a bowl of cereal or a peanut butter sandwich?

You are more important than the chaos that surrounds you and way more important than MS and all the chaos it can cause. Do what you can today and leave the rest for another day. It really is okay. You have my permission to hit the pause button and take a break.

I live in a messed up body

We live in a messed up world in a messed up body with a messed up disease, so when things get messed up around us…why are we so surprised? Don’t let the messes mess up your day. Sure they have a way of ruining even a good day, but hidden in the chaos are little pockets of smiles. Hang onto those smiles because they are what help get you through the most difficult times.

Growing up in a family of seven, we had our fair share of messes. I loved baking and would enter contests from time to time. As a ten year old I could make a killer lemon cake. It won me a blue ribbon more than once.

I was taught to clean up as you go. I had fun as I gathered all my ingredients; measured out what I needed; sifted, mixed, cracked, whipped, poured, and baked. The entire time I was also cleaning up, putting away, rinsing and washing to keep from having too big of a mess. By time the cake was in the oven, I was ready to watch it rise.

Now my oldest brother, that was a different story. You let him loose in the kitchen and it would turn out looking like a tornado hit it. He had no concept of order, he just had fun. He could make some amazing oatmeal cookies, scrambled eggs and even sirloin steaks, you just didn’t want to go in the kitchen afterwards. It was messier than messy. It was what I called confused chaos. It would take him time, but the kitchen would eventual get cleaned up looking just as amazing as his food tasted.

We both had messes to face, we just chose our own way of dealing with them. I would tackle things bit by bit as they came along and he would wait to attack them all at once. We both had fun, we both had messes, but in the end we both had something amazing.

It bothers me when people come along trying to dictate how to live with multiple sclerosis. What makes people think they’re the experts at living with a chronic illness? If I choose to follow a certain diet, something different than you…am I wrong, or are you wrong? If I choose to not take meds and you choose to take them…am I wrong, or are you? If I chose to visit a doctor and you chose to stay home, who’s right and who’s wrong?

You see, we each have our own lives, our own messes, our own chaos and our own fun. No one is right or wrong in how they go about living with MS. There are always things we could do better and new things to learn, but NEVER should we act as if we are the guru of all knowledge and wisdom regarding something as unknowable as multiple sclerosis, because we aren’t. It’s just that each of us deals with the mess it causes differently.

Don’t let anyone make you feel bad because they chose something different than you. You be you and do what you know you need to do for yourself. Be unique, be crazy, make a mess, try new things, make mistakes and even succeed…but most of all, hang onto the smiles around you and enjoy living. That’s what matters most anyway.

There’s only one you and only one today, but there is a potential for lots and lots of smiles to help you through this mess called life. Choose to find the smiles.

Don’t let Multiple Sclerosis make you feel as miserable mentally as your body actually feels

There have beens days when I have looked over the entirety of my life and wished things were different. I have even envied people who are not disabled. What? I shouldn’t think like that?

Sure that’s easy to say, but thoughts happen, and in my head they seem to happen more often than I care to admit. I don’t think you would want to live a day in my head. It’s kind of scary in there. I can think of some pretty crazy ideas and have some equally wild pity-party moments.

I’m not going to lie and say that I’ve never wanted things to be different, because I have. Those thoughts seem to appear when the struggle is at its worst…when my muscles stop working, my brain takes a vacation and pain intensifies.

I could let my disability ruin my day and cause me to become as miserable mentally as my body actually feels, or I could let it help me learn to appreciate the little things in life that we tend to take for granted. Things like the fact that my roof isn’t leaking, my shower works, someone somewhere loves me, and multiple sclerosis may be a part of my life but it’s not who I am.

One thing living with a disability has taught me is that there is so much to be thankful for. I think of the people who won’t have the opportunity to get through today and that’s enough to make me appreciate everything I have, whether it’s pain, the inability to do something or the complications MS throws my way.

I can overcome anything if I take my day and break it up into tiny bite-sized chunks. A friend once told me that it’s easy to eat an elephant. Not a real elephant, mind you. I wouldn’t even want to do that. But a giant obstacle you are facing. She said you do it one bite at a time. So that’s how I break my day up…one bite at a time. I may find things hard to swallow at times, but when I keep at it, I find that I’m able to get through anything that comes my way. That impossible elephant suddenly becomes possible.

I may end up weary, bruised and tattered when the day comes to a close, but regardless of the struggle I will hold my head high and keep pushing on. Other people…I doubt they would be able to get through an hour in my MS body, let alone a day.

Take time to enjoy the little things in life that bring you joy. Allow yourself time to smile. Appreciate the roses and the sunsets along with the splinters and stormy skies. Hold on to the good in life and don’t let it go.

My multiple sclerosis scars are real

Some of the memories we keep and the stories we tell about ourselves have to do with scars. You may have a teeny tiny scar on your finger from giving your best friend a haircut or a really big ugly one on your leg from a terrible bicycle accident, and every time you look down at that scar you are reminded of what happened and how you felt in the moment even if that event wasn’t very dramatic.

Each scar is a part of who you are…a part of your story.  They tell of hardship, courage, victories, and survival. Even the hidden multiple sclerosis scars that no one else can see unless they are viewing them with an MRI machine. Even those scars tell an amazing story. And just because they are hidden doesn’t mean they aren’t there. The evidence they leave behind is proof enough that they exist.

Some may say that having MS means you are broken. They may treat you differently than in times past, leave you out when making plans and as time goes by they may fade away from your life entirely. But I want you to know that you are not broken, damaged, used up or worthless. Maybe cracked a little (said with a smile)…but you are not broken.

And for anyone who insists on calling you those things, keep this in mind…

When the Japanese mend a broken object they choose to strengthen the damaged areas by filling the cracks with gold. They believe that when something has suffered damage and has a history it becomes more beautiful.

All your cracks and broken places, all your scars, all the damaged areas, are filled with incredible strength that shows others that even though life can be hard, it’s possible to rise above the pain. Nothing you go through is ever wasted.

So the next time you look down at your scars or view your MRI results, be thankful for the struggle and the tears because they have created in you a survivor, a brave fighter, and a courageous warrior. You have suffered damage and become more beautiful because of it.

We don’t look at the stars in the universe and say how tragic they are, how bruised they are, even though that is what they are. We look at them and speak of the beauty they contain. The inspiration they give us. Even though stars are the scars of the universe we don’t see them as these broken pieces of gaseous matter, we see them as these majestic astrological blessings that give hope to billions. What if you saw yourself in that same light, or better yet what if you saw others in a similar way. ― Ricky Maye

You are not alone in this fight with multiple sclerosis

There are times when your dreams appear to be unreachable. When you look back at what you used to do and who you used to be, and catch yourself wondering why life had to change and where that person went. It’s actually quite easy to get sucked into the thoughts of yesterday feeling miserable and questioning everything about life.

It’s important to understand that we all have terrible days and crazy thoughts. We all go through periods of time when we feel unloved, useless, worthless, unhappy, miserable…basically, as if the end of the world is here right now and parked in our backyard or maybe even in our living room. Those feelings are so very real and they hurt…bad.

With all the crazy thoughts that swirl around in our heads and the uncertainty each day brings, it’s easy to miss the fact that there’s an entire future ahead of you still. Yes, there is a future with multiple sclerosis. You are not alone in this fight.

It takes a lot of strength to keep from wallowing in the struggle and thinking too much about the fears of tomorrow. When you get caught up thinking like that, all you are doing is bringing yourself down. If there’s one thing I could encourage you with today, it would be this…

You are not a failure. You are not insignificant, useless, a burden or a disappointment. You are a beautiful, valued, and remarkable person, and you have an incredible future ahead of you. You are amazing. Yes, YOU!

 
Get out of bed and look at today as an adventure. Brush your teeth, get dressed and tell yourself that you are going to make it. You can do this. Don’t look back. Don’t look forward. Just look at what is in front of you right now at this very moment and conquer this day one step at a time, one minute at a time, one moment at a time.

You are the only one that can do this and you are worth the effort. Living with MS is tough…but you are tougher. You are braver, you are stronger even when you are at your weakest, and you are doing it. I believe in you and know that you have a lot of amazingness to share with the world and to be a part of!

How do I know that? Because you are AMAZING!!!! So get out there and conquer.

A few of my favorite things

I think I’ve turned into Linus of Charlie Brown. Well, maybe not really, but I have noticed that I have a favorite blanket and I rest better when I have it with me. We have a special bond…my blanket and I.

Its fuzzy and warm, but not too warm to cause me discomfort. It goes with me to the hospital when I have to stay overnight, is a comfort when I have infusions, protects me from the monsters in the night and lets me cry when I need to let out the emotions that are building up inside me.

What is it about things like blankets that bring such comfort? I guess it’s the same with a favorite shirt you wear when you’re watching your sports team play, a piece of jewelry you put on every time you go out, or a mug you gravitate to when pouring a cup of coffee (mine is a red mug a friend gave me). We get attached to things without even realizing we are doing it…even as adults. Things that bring us comfort and help to calm our days.

Everyone has an attachment to something…computers, sports teams, gum, even TV. We find a comfort when they are a part of our lives. Living with a chronic illness is so full of change, chaos, pain and uncertainties that I think we get attached even more to things that help us through the difficult days, and that’s okay.

I actually have a few things that bring me comfort besides my blanket, things that bring me joy on those difficult days: books, chocolate, the laugh of a child, a clean house, the smell of cookies baking, sitting by a fire, being outside in the coolness of the morning, coffee at sunrise, opening a surprise gift, the smell of fresh cut grass, the perfect shoes, a great joke, a night time sky full of stars, people watching, roasting marshmallows, completing a puzzle, listening to a friend tell a story…these are a few of my favorite things.

When difficulties come your way, what brings you comfort? What do you surround yourself with to bring you smiles? What are a few of your favorite things?

Life can get hard with Multiple Sclerosis

I heard time tick by this morning: 1 AM, 2 AM, 3 AM, 4 AM. I tried so hard to sleep. All attempts to get Mr. Sandman to pay me a visit failed even though I was exhausted. If there were any sheep to count I would have tried counting them, but all the sheep must have been out to pasture.

There comes a point during those sleepless moments when tossing and turning becomes so miserable that I have to get up to do something, even if that something is staring at the walls in the living room rather than the ones in the bedroom. At least it’s something different.

I moved myself to the couch in the living room where I sat listening to the crickets, frogs and birds. All of nature seemed to be awake with me. Maybe I should be counting chirps and croaks at this hour instead of trying to find fence jumping sheep.

As I sat on the couch I began to think about the past week. About how miserable, exhausted, lonely, limited and painful life can become. It seems no matter how hard I try to hold it together, my body keeps falling apart. That thought alone is enough to overwhelm a person. Maybe you have been there before too.

I’ve noticed that people are great at throwing out their cliché quotes of not giving up and about how much worse things could be at the most inappropriate times. I grow tired of the insensitive one-liners and sugar coated quips. Life is not a cliché and can’t be solved by one either.

I can be positive and still hurt, have fears, worry about tomorrow, and even cry, but the reality of multiple sclerosis doesn’t have to control my thoughts like it controls my body. MS may dictate everything else about my day, but I refuse to give it control of my thoughts.

Don’t let the things you can’t change be the focus of your day. Yes, MS is a terrible disease. Yes, you have to deal with some pretty terrible things in life because of it, but don’t let those things turn you into an upside-down, twisted-up, unripe, sour-faced lemon. You can still enjoy life no matter what you are facing or how hard life becomes.

Instead of spending your day grumbling about how lemon juice got squirted in your eye, take those lemons that have been handed to you – okay, maybe thrown at you – and turn them into the most incredible pitcher of lemonade ever. Put Tropicana and Fresh Farms to shame.

And, if you can’t make lemonade, why not cut them up and offer them to some of the insensitive people to suck on? It will give you a laugh to watch their faces as they turn inside out. Seeing their sour pucker could possibly cause you to lose your frown.

Today, choose to think about something that makes you smile rather than focusing on the pain. Choose to be the one in charge of your thoughts. Choose to live in spite of MS.