Dear Weary One…

Dear Weary One,

I know your heart is heavy. Right now you are on the verge of tears…tears that have been collecting deep in the spaces of your heart and flooding over into your mind. You have met reality face to face and you don’t like it one bit. Multiple Sclerosis is your reality. It’s real and you feel it deep.

Many times you find yourself overwhelmed and challenged in areas of your life that you never thought challenging before. You feel the weight of simply making it through today to be daunting as laundry piles up and errands are put on hold. You don’t feel very brave right now.

Sure, when you go out the door to greet the day with a smile plastered across your face, people see you as strong and resilient, but that’s a mask you wear out in public to cover the pain. They don’t realize the weight you carry.

In the quiet when you are able to get away from the crowds and business of life, that’s when the mask comes off. That’s when your thoughts run wild and the tears begin to fall. That’s when you find yourself wondering where your brave is…when you feel numb to the core and every emotion imaginable comes crashing in?

You find yourself asking where’s your brave when all you see is clouds around you? Where’s your brave when you tear up because you can’t find the strength to hold onto a pencil to write your name? Where’s your brave when you try to walk across the room but can’t seem to get your feet to cooperate and end up having to sit down? Where’s your brave when your words get all jumbled up trying to have a normal conversation? Where’s your brave then?

I want you to know that you are brave even when you don’t feel like it. There truly is strength in you. A strength so amazing that even you can’t see it…but others can. You’ve held on this long, you’ve made it this far, you’ve kept going when others would have long ago crumbled…that’s brave, that’s strong. You don’t see it, but I sure do. You are a brave warrior in this fight.

Rise up and be confident in who you are. Don’t give up just because the road is hard. It takes a strong person to wake up in the morning and face a new day surrounded by challenges, and you are doing it.

Discouragement will happen, exhaustion and stress will find you, but don’t allow your heart to grow weary too. It’s okay to let the tears flow. Sometimes that’s what you need to do to lighten the load. Let the tears flow then let it go and find your brave today, because you are brave!

Signed,
A friend standing with you in the fight

 

Today, we fight…

How can anyone live with a chronic illness and still smile? How is it that I am able to find happiness after a disease has stolen away a flourishing career, ended friendships, isolated me from much of the world, and many times confined me to my house?  How is it that I am not falling apart along with the rest of my world?

I must be living in denial or in some sort of fantasy world that I’ve made up in my own head. No one can have progressive Multiple Sclerosis and still find purpose in life. No one can have their life striped away; have moments, if not days, of tears; live in continual, relentless pain, fatigue and weakness yet find themselves not cursing the world, their disease and everyone or anything that says differently.

How can anything good come from a life of pain?

My response…

Pain has taught me that joy is possible. After all, I wouldn’t know the treasure a smile could bring if I didn’t know the misery of continual pain. I wouldn’t hold dear those moments of peace I experience if I had never lived through days of chaos and disorder. I wouldn’t appreciate the little things in life that so easily get passed by as nonsense or unimportant by most people if I hadn’t been in a place where those things were all that kept me going.

I don’t know what the next moment in my life or tomorrow will bring. I don’t know if today will end in tears or laughter. I don’t know if I will be able to muster up enough strength to fight my way through. I don’t know if my hands or legs will fail me when I need them the most. I don’t know if there’s really a light at the end of the tunnel or if I’m heading towards a tragic collision with the 6 o’clock train. There are a lot of things I simply don’t know.

But I do know one thing…MS cannot and will not define me. I used to be so brave. I used to be a tower of strength. I used to be a mighty warrior. But now…now I’m a warrior with shaky knees, trembling hands, covered in scars and tears in her eyes. I have been striped naked and bare because of MS, but today…today, I put my foot down and refuse to sink amidst the swirling tumultuous seas that push against me. I refuse to quit. I refuse to give up.

Today, the battle I am facing begins in my mind. I am reminding myself and you, that we are more than MS. We are more than the pain. More than the loneliness, struggles and fears.  We are true warriors! And although people may never understand the battles we face or see the internal struggles that take place in our lives, we stay in the fight…weak, but grateful for one more day.

Wear your medal of honor, bravery and courage proudly today. Hold your head high. You are a hero…a valiant, courageous, mighty MS warrior! You are strong enough. You are brave enough. You are tough enough.

When taking a shower hurts

There are times I wish everyone would just go away and leave me alone so I can clear my head and distance myself from all the drama, arguments, pain and chaos in the world; to find such a place where I can cry as much as I need to and let out a scream or two from time to time—even if only for 5 minutes.

It’s not always easy finding that perfect spot. The place where no one else is hanging around to judge you for simply being you. For me, that place just so happens to be in my shower. Somehow I am able to have my own crying party in the solitude of the bathroom away from the world as water gushes down my face. It just seems easier to think and cry in the shower. I have washed many tears down the drain in my lifetime.

Lately though, showers haven’t been so freeing. This may sound weird to some of you, but much of the skin on my face, arms and legs have become so hypersensitive that even water hitting me from the shower head hurts. And when I say hurts…I mean HURTS!

I’ve been pointing the shower head to the side wall and filling a large cup with water to rinse the shampoo out of my hair and off my body. It makes bathing a bit more complicated, but if I don’t want to smell like a skunk I have to change and adapt to the strange things multiple sclerosis does to me.

It seems MS is good at making simple things, complicated. Who would have guessed that clipping your fingernails could become a near impossibility to accomplish all by yourself? Or that things like signing a check, picking up the mail, vacuuming, getting dressed, or even brushing your teeth require more time, energy and help than ever before?

I never really thought about doing those things in the past. I just did them without realizing how much I was truly taking for granted. But today, many things have become a challenge for me to complete. It’s as if each day, as I pull back the covers to get out of bed, I start my journey to the top of Mount Everest. I don’t always make it to the top as the day comes to a close, but I press on anyway.

Multiple Sclerosis is the disease that keeps on giving and taking away. If you ask me, it’s pretty selfish. But regardless, I refuse to let it limit or define me.

REMEMBER: You have this terrible, often times debilitating, disease called Multiple Sclerosis and it’s trying to take over your body, your life…but you are not MS. You are an amazingly courageous person that can still love, dream, laugh, and hope for a better tomorrow. I’m loving, dreaming, laughing and hoping with you.

I don’t remember

This week, Monday came and went without incident. The only problem is that I don’t remember Saturday or Sunday having been lived through. I have tried hard thinking about the weekend but the only thing I can remember is that I can’t remember.

I think I went to the grocery store, but then again I might have done that on Friday. It rained much of the time and the temperature outside was much cooler…I think. I dozed off a few times in the living room while watching something on TV…I think.

There are so many possibilities that could have filled my time. It’s possible I might have buried a dead body in the back yard, I could have won a years supply of chocolate, or I just might have robbed a bank and am now a multi-millionaire. Who knows? I sure don’t.

The one thing I do know is that I’m still here breathing in and breathing out, alive, and ready for a new day, It’s weird how the brain works. You know how some people have selective hearing and can tune out things that annoy them? Yeah, well I think I have selective thinking.

It amazes me that I have no problem remembering the words to the Animaniacs theme song but easily forget that Tuesday is trash day unless I am reminded by an alert on my phone. If I didn’t have reminders to keep me on track I’d probably not get anything done.

I forget to call people back, answer text messages and respond to emails. It’s not intentional. It just is what it is. If I haven’t responded to you…sorry about that. If I forgot your birthday…again, sorry. If I can’t remember your favorite color, miss an appointment because I didn’t have it written down or forgot your name, trust me, it’s not on purpose.

Multiple sclerosis just has this way of scrambling my thoughts and at times turning them into mush. Sometimes I wonder how I get anything done at all.

Well, it’s time to restart a load of laundry that I left in the washing machine for a few days. Let’s see if I can get them re-washed, dried and put away without incident today. That is my goal. I’ll let you know how it goes.

What was I trying to say?

Words. We all use them. When we aren’t speaking them out loud, we are thinking them in our heads or writing them down on scraps of paper. Not one day goes by without the use of words. My words, though, seem to come out all mixed up. It’s as if someone took my vocabulary, put it into a blender and then dumped all the chopped up words on a table. Only somehow, some of the words got lost. Maybe the dog ate them. I think I’ve seen him talking when he thought no one was watching.

While writing, somehow I seem to put words into sentences that don’t actually belong and leave others out. It’s just as bad when I talk. I will say something and then pause for a moment wondering “What did I just say?” I know I have left people scratching their heads in bewilderment as I matter-of-factly explain something I need done, then wonder why they aren’t doing what I asked.

Somehow I hear everything correctly inside my head but the words that exit my mouth…well, they aren’t the ones I was thinking. It’s the old “bait and switch” routine that my brain plays with me. He’s a sneaky bugger.

It’s crazy how the filter between my brain and fingers, or my brain and mouth, seems to get things all mixed up. I wonder if there’s a replacement filter I can install? They make oil filters for my car that have to be replaced after so many miles of use. Can I get a word filter replacement for my brain, please?

And don’t even suggest turning on auto correct. Auto correct messes me up even more. I am convinced it’s trying to take over the world. It will rewrite my words into different words and insert random words into sentences that have nothing to do with what I’m trying to say. That’s when I get really confused. Many times as I look at something I’ve written, I’m left wondering what I was even trying to say in the first place.

According to auto correct, not only do I “create new words” but I’m “cursing bee wigs” too. I didn’t even know bees had wigs. I’ve heard something mentioned once about bees knees, but never about wigs. Do they even have hair?

Oh, the joys of Multiple Sclerosis. If you can’t laugh, you will have a miserable time in the days and years ahead. Laugh and keep on laughing. Or as auto correct just corrected me, “lift and keep on lifting.”

Sometimes all I can do is just 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.

Sometimes all I can do is sit and cry. So do you know what I do? I sit and cry. That’s right. I have no secret remedy for how to face the pain graciously. But 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.

potatoes eggs and coffee

Potatoes, eggs and coffee

The past few weeks for me have been hard. Sometimes life just keeps happening and no amount of searching uncovers the STOP button. This short inspiring story has been running through my mind lately. It was something I read a few years ago and I find myself thinking of it from time to time, especially when I’m having a really bad day. Every day we are faced with choices. We may not be able to choose the struggle, but we do get to choose how we will respond to it…

Once upon a time a daughter complained to her father that her life was miserable and that she didn’t know how she was going to make it. She was tired of fighting and struggling all the time. It seemed just as one problem was solved, another one soon followed.

Her father, a chef, took her to the kitchen. He filled three pots with water and placed each on a high fire. Once the three pots began to boil, he placed potatoes in one pot, eggs in the second pot and ground coffee beans in the third pot. He then let them sit and boil, without saying a word to his daughter. The daughter, moaned and impatiently waited, wondering what he was doing. After twenty minutes he turned off the burners. He took the potatoes out of the pot and placed them in a bowl. He pulled the eggs out and placed them in a bowl. He then ladled the coffee out and placed it in a cup.

Turning to her, he asked. “Daughter, what do you see?” “Potatoes, eggs and coffee,” she hastily replied.

“Look closer”, he said, “and touch the potatoes.” She did and noted that they were soft.

He then asked her to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg.

Finally, he asked her to sip the coffee. Its rich aroma brought a smile to her face.

“Father, what does this mean?” she asked.

He then explained that the potatoes, the eggs and coffee beans had each faced the same adversity-the boiling water. However, each one reacted differently. The potato went in strong, hard and unrelenting, but in boiling water, it became soft and weak. The egg was fragile, with the thin outer shell protecting its liquid interior until it was put in the boiling water. Then the inside of the egg became hard. However, the ground coffee beans were unique. After they were exposed to the boiling water, they changed the water and created something new.

“Which one are you?” he asked his daughter. “When adversity knocks on your door, how do you respond? Are you a potato, an egg, or a coffee bean?”

In life, things happen around us and things happen to us, but the only thing that truly matters is how you choose to react to it and what you make out of it. Life is all about leaning, adopting and converting all the struggles that we experience into something positive.

Taking care of yourself is not selfish

Last summer the heat outside kicked my butt. I tried all the normal tricks to remain cool and keep my core body temperature down, but no matter what I did my body grew weaker as the summer progressed. I’m not looking forward to the coming hotter days.

It’s crazy to get exhausted just going to the mailbox. That short of a trip and I was ready for a nap. I have learned to take things as they come and listen to my body even though it’s not always easy to do. It can actually get quite frustrating.

Sometimes I will have my heart set on going somewhere then not have the energy to go and have to cancel plans. Or I have something that needs to get done but it doesn’t get done for days and days and days just because I can’t muster up the strength to do it. If I could, I would hire a maid to clean for me, a cook to make my meals and a chauffeur to take me places. Now that would be the life! Include getting rid of MS into the mix and that would be my dream come true.

But as it is right now, I’m the one that has to do everything. It’s up to me to take care of the house, do the laundry, prepare my meals, bathe, vacuum, pay the bills, make the bed, put gas in the car, clean up my messes, and live with MS.

So what do I do? I do what I can and leave the rest for another day. I have had to learn to be okay with not getting everything done that I want or even need done. Taking care of me is way more important theses days than taking out the trash or getting the mail. My wellbeing is more important than attending a ballgame in 100 degree weather and my health is of greater importance than buying a birthday gift for the lady down the street.

Be good to yourself. Take care of you. No one else is going to do it for you. It’s okay to cancel plans, veg on the couch, sleep late, and most importantly to need help.

There are several people in my life that I know would do anything for me if I asked. I try my best to not take advantage of their good nature and use the calling card sparingly. Mostly because I know the day will come when their help will be needed daily and I want to do as much as I can on my own while I can. That’s not being stubborn or selfish. That’s being persistent and determined in spite of living with MS. I will concede when the time comes—reluctantly, I might add—but that time hasn’t come as of yet. So what do I do…I keep going.

You too! Keep going, doing, being, until you can’t any longer. I have never met an MSer that wasn’t a strong and powerful fighter even on their weakest days. We push through some of the toughest battles. Things that other people never see or even know about because we simply keep going. MSers are an amazing example of strength, persistence and determination. I’m so very proud of you and cheering you on today.

There’s a nap for that

I think I slept a total of 3 hours last night if I were to add up all the time I wasn’t actually watching the minutes tick by. Boy, can I feel it already today too. Nights like that make for some really interesting days. You will find me yawning in the shower, as I work, and even as I eat. It’s funny how that happens.

My days seem to always be filled with the longing to go to bed and my nights are filled with my brain refusing to sleep no matter how exhausted I am. It just won’t stop talking, and the random things it chooses to talk about are crazy. “Why can’t you buy a bag of Oreo middles? Why don’t penguins fly? Where is that middle of the universe, really!?”

I guess you could say I don’t sleep even at night, I just nap. I nap at 2 o’clock in the morning and at 3 o’clock in the afternoon…and other times in between. Multiple sclerosis can truly be exhausting, more for some people than for others. I can tell it definitely is for me.

When my body is screaming at me to slow down and take a break, I listen now more than I did in times past. Those pauses in my day aren’t me being lazy or a sign of weakness, they are simply a necessary part of me taking care of myself.

I can’t stop the impact of MS on my day, but I can do better at handling the exhaustion that comes with it. If that means taking a nap, sitting alone in my car to get away from the hustle and bustle happening around me, or taking a trip to the park for a little R&R, then I do it. No guilt. No shame.

Know that you are important enough to take that time too. Life is moving at such lightning speeds and it seems to demand so much out of us that rest just doesn’t fit into our plans. Don’t buy into that lie. Rest is needed and more valuable than you may realize.

Press the pause button today, hang out the do not disturb sign, and make the choice to be still in the middle of the day…just try not to snore too loudly, or drool.

thread

Hanging by a thread

I have come through many days feeling emotionally as if I were hanging by a thread. That kind of feeling can be scary and so very real. It’s hard to talk about things like that with someone who isn’t where you are in the middle of MS and life.

Those worn out, overwhelming emotions can cause a person to grow weary and makes it incredibly difficult to see tomorrow because all possibilities of happiness today seem impossible.

Sometimes you have to get back to the basics in order to make it through the pain you are facing today. Think of your day like this…

Every cell in your body is fighting to survive right now. Your strength may be waining, but your heart is beating and you have breath in your body. Can you feel it? Breathe in. Breathe out. It’s a new day and a new chance for something good to happen. Sure, life is hard, but no matter what you are going through today, believe that things are going to be okay.

MS is not the end of your life. I know how alone you can feel surrounded by the chaos. I know how much life sucks when you are faced with this monster called multiple sclerosis. You probably feel like an iceberg drifting along in a vast open ocean. It’s freezing cold and you are the only one hearing the cracking of the ice beneath you. But look there, below the surface. There are layers and layers of strength holding you up. You are not going to sink in the waters. You are a survivor!

I want you to know that not only are you going to get through this, but you are going to live again. You will feel more joy than you thought ever possible. You will. You really will.

You may walk with a limp, talk with a slur and hang onto walls for support, but you are going to be okay. You may cry more than you thought possible and the load may be hard to carry, but you’re strong. So very strong!

When you feel like the world is crashing in around you, know that I’ve been there too along with thousands of others. You’re going to get through this. You can do it. You ARE doing it…one breath at a time!