You are a masterpiece in the making

I once had a job picking up rocks. Of course, I was only six years old and I earned a meager penny per rock, but it was a job all the same. We were farmers back then and clearing new land, preparing an area for crops. I’m talking about acres and acres of land to grow a harvest for the coming year.

Initially the soil was roughly plowed to break up the hard ground. My job was to walk behind the tractor and pick up the rocks that the plow blades brought to the surface. Some of those rocks would be small, about the size of a golf ball. Others would be so big that I would struggle just to lift them. And then there were some that were simply impossible for me to get my tiny hands around. Those rocks, or maybe I should say boulders, I would leave for one of the grownups to collect. Each rock earned me a penny, no matter its size. I felt so proud and important.

After walking across every inch of the plowed field, picking up rock after rock that surfaced, the land would be plowed again, only this time a little deeper.  And we would go through the same process all over again. It took a lot of hard work to clear a field. It was true back-breaking work. But at the end of the day, although you were sore from head to toe with fingers bleeding from cuts and blisters, and dirt was caked under every fingernail; as the sun was setting you had a sense of accomplishment as you looked to the edge of the field where a pile of rocks lay and then looked across the beauty of the freshly plowed field, cleared and ready for planting.

It’s amazing the things that come to the surface when you plow a field besides rocks. Broken pottery and glass, arrowheads, and even rusted out tin cans. You never know what may show up. But each item has a story of how it got there. Those pieces of pottery and glass at one time were used to carry living water, and now all they carry is a memory of what used to be. Those unearthed arrowheads were used to hunt and target practice with and now they are thankful to see the dawning of new light.  And those old tin cans, which were someone’s meal in days gone by, are now filled with holes and no longer able to hold anything of substance. I even once found a fork, a rusted out and half missing oil lantern, and an old leather shoe.

But do you know what I did as I walked behind the tractor picking up rocks for a penny? I picked up those other items as well. I not only had a pile of rocks at the edge of the field when the day was over, but a pile of broken stories in my pocket. Each item made its way back home with me and I gave them their own place of honor in my room. They were my treasures.

Just like those treasures I put in my pocket… your life is a beautiful treasure. You may be broken and feel unimportant at times, but you are a treasure no matter how you feel. I know at times we can start to feel useless, especially when we are unable to do the things we thought made us great, but it’s important to understand that who you are is not based on what you can or can’t do. You may be broken, but that brokenness simply tells a story of where you have been. You are a masterpiece in the making.

The phantom multiple sclerosis itch strikes again

The phantom multiple sclerosis itch always catches me off guard. How do you explain to people that you itch and yet there’s no reason as to why. It’s not like I was attacked by a swarm of mosquitoes or sat in a pile of ants. There would be welts and scars proving that my skin is irritated.

For some reason it causes me to scratch my skin trying to stop the itchy feeling that I can’t seem to find. Many times I end up scratching it raw. It’s really weird to go on a hunt for a hidden itch. I never seem to be able to find it.

My Neurologist prescribed Carbamazepine in hopes it would help, but for me it didn’t. And I’m allergic to Neurontin so that’s not an option. I break out in hives causing a real visible itch.

Calamine lotion and benadryl creams don’t help. I’ve tried them all. I’ve tried all kinds of essential oils too and I just can’t get any relief and it moves around. It seems to be a mind over matter challenge. I have to work hard at trying to stop the need to scratch. I have to purposely get busy doing something other than thinking about the need to scratch.

I tried to use a hair brush to help me on my hunt, a brillo pad, rubbing alcohol, ice and heat. Just something for some relief. It’s kind of like how my nose itches every time I have an MRI. My body knows it will be trapped so it pulls the itchy nose trick to drive me crazy.

Nerve pain can be a true pain, but nerve itch for me can be worse. It’s like the itch is hiding somewhere inside of me rather than on top of my skin. It’s there somewhere. Maybe in another dimension, another timezone, another universe, another galaxy. UGH… Calgon take me away!

You are not a mistake and neither is your life

When Dr. Silver of the 3M Company accidentally discovered the adhesive now used in Post-it notes, he found it fascinating but because the glue was so weak, he thought it had no apparent use. It was considered to be a failure. Years later, one of his colleagues was having problems keeping bookmarks from fluttering out of the pages of his books when he remembered the adhesive. He wondered if it would keep the pieces of paper in place. It was at that moment the Post-it note was born. It took ten years and lots of failures, but today that failure is found all over the world.

There are a lot of discoveries in life that happened all because of an accident. Things like penicillin, velcro, x-rays, super glue, and even the slinky. We wouldn’t have any of those things without mistakes happening. Maybe some day a multiple sclerosis cure will be added to that list. Hey, anything is possible!

Just like those seemingly useless mistakes, those of us living with MS appear to be weak and useless to the world…and many times to ourselves, but we are not mistakes. At times people can make you feel unimportant and of little value, but it’s not what they think that matters anyway. It’s what you think. Don’t listen to what those thoughtless, ignorant people say. You are not a mistake and neither is your life.

When faced with difficulties in life, you can allow those hard time defeat you, causing you to feel like a failure, or you can turn them into your greatest opportunities. Take those supposed failures in your life and keep going knowing that your future is still filled with hope…with incredible dreams, discoveries, possibilities and failure moments.

How can you have hope and bounce back from an MS diagnosis like 3M did with their glue? You come to the realization that no matter what you are facing or having to endure, you are not done yet. As long as you are breathing, there is a plan for your life. What looks like a failure is actually an opportunity for greatness.

This supposed failure in your life is not the end of you or even the end of the world. Get up, dust yourself off and start again…and again…and again. Keep going and don’t ever quit. Don’t let MS get the final say.

Yes, I have dreams

As someone living with multiple sclerosis, I actually dream at night or during my daytime naps. I hear from some people that say they have either stopped dreaming, have fearful dreams, or can’t remember their dreams. Oddly enough, in all my dreams I am not disabled. I seem to be able to walk, run, talk, fly, and do some extraordinary things.

The dreams I don’t normally talk about are the nightmares that creep in and set my nerves on edge. This morning for some reason I woke up in tears. I have no recollection as to why I was crying and it caught me by surprise. It took a few hours for me to pull myself together and shake the feeling that seemed to hang around afterwards. All I knew was that I was safe and my family was as well. I have prayed a lot. I don’t know what to think and thankfully that kind of thing doesn’t happen often.

I would much rather dream of inventing flying roller skates like I did a few weeks ago. I’m still not sure how they work, but with them on I could go anywhere, reach anything and do the impossible. It seems I was able to climb a mountain without any effort and had enough energy to make waffles for a late afternoon breakfast afterwards. Yum, I’m still hungry thinking about them.

Out of all the dreams I’ve had over the years, the dreams of greatness have always amazed me and inspired me when I was at my lowest.  We need to always be thinking of ways to help others living with MS, to bring smiles to their life, help ease their pain, and let them know that they aren’t alone in this fight. Let your dreams become bigger than your fears and your actions become louder than your words. Don’t give up on your dreams.

Just because you have MS hanging around, don’t let that stop you. Yes, MS is your weakness, but it’s the very thing that has made you strong. You may have to rethink your methods, rework your plans, redo your final outcomes… but it’s important to know that failure is not the end.

Thomas Edison’s teachers called him “stupid” and he was fired multiple times before “failing” 10,000 times attempting to invent the lightbulb. According to Edison “I have not failed 10,000 times. I have successfully found 10,000 ways that will not work.”

Michael Jordan was once cut from his high school basketball team. He later said, “I’ve missed more than 9000 shots in my career. I’ve lost almost 300 games, 26 times I’ve been trusted to take the game winning shot… and missed. I’ve failed over and over and over again in my life. That is why I succeed.”

If only you knew just how close your dreams actually are to becoming a reality. If you’ve stopped believing in yourself… I believe in you! You got this. Don’t give up hoping on your dreams. Always be ready for your next adventure.

Normal is no longer what it used to be

When someone mentions multiple sclerosis, a lot of people immediately think of numb body parts, walking difficulties and fatigue. Those symptoms are fairly well known, but there is so much more to this disease and so many more struggles that we endure daily – sometimes silently – that should be talked about and shared.

To me, multiple sclerosis feels like an earthquake just went off inside my body and different body parts are experiencing continual aftershocks.

I remember one day when I was sitting on my couch typing out an email to a friend and my right hand began shaking uncontrollably. It was weird and scary all at the same time. I literally had no control over it. It seemed to be flopping about like a fish out of water.

I sat there staring at it thinking “Okay, you can stop now.” I even tried holding onto it and massaging it…to no avail. After some time it finally subsided a bit but still goes on these crazy binges from time to time where I have no control over it. I have a weighted wristband that helps me to control the tremors but even wearing that doesn’t stop them entirely. There’s always a slight shakiness going on.

Because of MS my body has been known to shake, jerk and twitch without being provoked. I’ve thrown things across the room unintentionally. I once threw my phone without warning and didn’t have time to tell everyone to DUCK! It’s not just in my hands either. My legs twitch and jump about too. I kicked my brother once…although that one could have been on purpose. I’ll never tell.

I also have this weird thing with my ears. They ring constantly and there’s a repetitive flutter happening in my right one like when water gets trapped in your ears while swimming and it’s trying to work its way out. Someone could be talking to me and instead of listening to them, I’m thinking “stop ringing, stop fluttering, just STOP!”

There are times when I may want my legs to move and they won’t, or need my hands to function and they are rebellious, but when sensation is out of whack too…that’s an entirely different level of weird. I have two fingers on my left hand that feel like ice all day long even in the heat of summer. I also have this strange feeling of water dripping down my cheek from time to time. I know it’s not real but I find myself constantly checking just in case. I have been known to drool without knowing it was happening.

Then there’s this strange feeling I have of bugs crawling across my skin and an incessant itching feeling in my arms that won’t stop with scratching, rubbing or creams…all happening inside my body where no one can see.

It kind of becomes like that old saying “If a tree falls in the woods and no one is around to hear it, does it make a sound?” Well, I can tell you for a fact that if the nerves in your body break and no one can see the damage, they really do make you do some really weird things.

Don’t let your body’s craziness drive you crazy in the process. It’s hard dealing with an out of control body. Sometimes you want to scream at it and at your entire life…”Stop! Just STOP!” But life goes on and nothing ever seems to stop. Know that you aren’t alone and you aren’t making the craziness up. There are others who understand and face this unseen monster too in some very weird and strange ways.

Normal is no longer what it used to be.

Living in a messed up world with a messed up body

When I was little I loved going outside right after it rained so I could play in the mud. I would make castles with moats and cities with rivers running through them. So many creations of mine where built in those moments. I would let my imagination run wild as the mud squished between my fingers and toes.

It didn’t make my mother all that happy though, especially when I would walk inside with muddy feet and hands leaving a trail of southern red mud on the floor for her to clean up. I would try my best to use the water hose and wash myself off first, but it’s not that easy for a 6 year old to clean up like a grownup can. My clothe many times would be forever stained with traces of red mud that would never come out. I guess you could say I would make a mess of things. Messy body, messy clothes, messy floors, and when it was all over, a messy bathroom.

Messes happen all the time. You know what else is messy? Life! It’s filled with twists and turns and unexpected surprises. Add multiple sclerosis and you end up with not just a muddy mess but confused chaos.

MS brought a bunch of messiness into my life. Now don’t get me wrong, my life was already messy but I really didn’t need anything more muddling things up. Aren’t I lucky? MS picked me out of the thousands it could have chosen. It picked you too. And here we sit…a rumpled up, goofed up, mixed up mess.

I have learned to appreciate the messes that life sends my way. They come around unannounced and without warning. I would love to have the opportunity to throw them back or pile the messes up at its front door, but somehow I can’t seem to think fast enough to do it.

Sounds crazy, I know, but some of the most amazing flowers I have ever seen have grown out of the most terrible of circumstances. I saw a beautiful, radiant flower growing in the middle of a smelly old compost pile once. There’s something powerful and amazing about a flower growing in the midst of tragedy. Imagine all it had to go through just to bloom, to grow. It had to push through a whole lot of crap, suffer more than most, yet somehow found the strength to rise up and bloom where it was planted… in the middle of a mess.

I’m sure it felt suffocated, unappreciated, unlovely, unimportant, and even out of place, especially seeing all the other flowers enjoying the comforts of the flower bed. Yet there it was stuck in a pile of garbage. That would make any flower contemplate giving up.

No one chooses to go through life differently, in pain, struggling from moment to moment, and uncertain of tomorrow. No one wants to pack up their dreams, throw away their careers, and say goodbye to abilities they know they will need in order to get through their day. No one dreams of a life with MS.

It choses us and there’s nothing we can do about it except keep on living. That’s a choice, you know?! Living in spite of the mess surrounding you is a choice. It’s not an easy choice, but it’s still a choice.

This falling apart business is not all that it’s cracked up to be. Life is messy. It changes you. It’s humbling and eye-opening. Sometimes we have a hard time trying to get it all together. But I hope at least it makes you a more compassionate person towards others. I know it has for me.

Make today a good day. I don’t mean a mess free day… just a good day. You’re not alone in this messy mixed up world. Let’s muddle along together through this crazy mess of a life. I think you and I, we’re doing okay… all things considered!

Even with all the difficulties and disappointments, I know you’re not a quitter. You are like that amazing, beautiful flower growing in the middle of a mess. That’s pretty incredible if you ask me. Don’t miss out on living. You may not be able to change your circumstances, but you can change your perspective and find beauty in the mess.

Are you weary, tired, and worn out? This is for you.

This is for the weary ones, the tired ones, and the “I can’t go on” ones.

This is for the ones who cry behind closed doors yet muster up a smile to face the day.

This is for the ones who dream of the day multiple sclerosis is cured so they no longer have to deal with doctor appointments, meds, needles, weakness, and pain.

This is for the ones who keep going even when they know they need to stop for a moment to do nothing but chill on the couch with a good book or a marathon of their favorite show on TV.

This is for the ones who long to take a vacation where they are waited on hand and foot; no laundry, no dishes, no vacuuming, no work of any kind.

This is for the ones who get stressed and overwhelmed with the demands a life with multiple sclerosis brings.

This is for the ones who find it hard to keep going, who long for a break, who need time off, and who deal with too much.

This is for you.

You are an amazing, courageous, beautiful person. You are not alone. Take some time to do something just for you. That pile of laundry…let it pile up. It doesn’t matter. Take time for you. Treat yourself to a movie, a night out, a steak dinner, a trip through the park, or a giant slice of chocolate cheesecake. Shake off those negative thoughts that cause you to feel worse than MS could ever make you feel.

Stand outside of your situation and for just a moment try looking in from the outside. Think about what you would say to someone else standing in your shoes. Would you remind them of their value? Would you tell them to worry less? Would you encourage them to ask for help so they aren’t doing everything alone? Would you show them how to smile through the tears?

You have a mountain in front of you… an Everest. That’s your reality. But no matter how big it may be, it can be climbed. Don’t look at its massive size. Choose instead to take you eyes off of the rock in front of you and look out at the beauty all around. Stop for just a moment and breathe. It takes courage, determination and strength…and you have each one.

So as you climb Mount Everest with your heart pounding in your chest and your knees buckling under you, give yourself one tiny moment to realize just how incredible you really are. You are worth it. You matter!

You are stronger than you think

So, what’s it like living with multiple sclerosis? That’s a question I am asked from time to time and one that’s not all that easy to answer. Trying to describe the physical and mental difficulties and limitations that we experience because of MS is often met with some interesting responses from others.

I’ve been told to “take Tylenol” for the pain in my body, to “eat more potassium” for the cramps in my legs and hands, and to “take B12 and energy pills” for the exhaustion. When I explain that those things simply don’t work for me, they look at me like I’m a one-eyed purple polka dotted crazy person. After all, it works for them so it should for me too.

Some people just don’t seem to understand that those of us living with MS are not like them. We have a damaged Central Nervous System. Some of the damaged areas have healed well over time but some haven’t. And new damage appears all the time.

The pain we experience is not because we are in real pain like someone stepping on our foot. We are in pain because our nerves are misfiring and sending pain signals to our brain when there is no real existing pain in the first place. To stop the pain you have to stop the communication process, not the actual pain. There are some medications that help to disrupt this broken communication, but I haven’t found one yet that works for me.

The numbness in our body is not something that goes away by uncrossing our legs like someone does when their foot falls asleep. Parts of our body are numb, experience that “pins and needles” feeling, and cause pain to shoot through our body every minute of the day. No amount of rest or exercise will wake them up.

The exhaustion we experience isn’t because we didn’t sleep well the night before or because we aren’t eating nutritionally. It’s a debilitating symptom of the disease that is not remedied by natural herbs and better sleep. Although those things can help, it’s not a “fix”. Making it through one day without having to take a nap is a good day.

Many of us also deal with vision problems that can’t be corrected with glasses, dizziness, muscle weakness, bladder and bowel dysfunction, breathing difficulties, and of all things, heat makes it all go into supersonic chaos.

That hot shower most people enjoy, we can’t take because our muscles will seize up. That hot tub soak, an impossibility. That day at the beach, even in the shade our symptoms can be hard to deal with. That trip to the mall, within thirty minutes many of us are done. Just making our way across the parking lot of the grocery store presents a challenge that some days we don’t want to face.

But through it all, I have learned to look this disease called MS square in the eyes and say, “I am not defeated because of you and regardless of what happens in life I am thankful for each new day I am given.”

We will never understand all the “why’s” in life. Why MS? Why now? Why me?

Stop questioning why you are going through the storm you are currently facing and determine to be thankful as you go through. You can be thankful even in the most horrible of circumstances, but it’s a choice; and you can make that choice today. You can stand up (even if only on the inside) and say, “I refuse to be defeated by MS.”

I have learned that strength isn’t measured by the amount of things I can do or by how big my muscles are, it’s determined by the attitude that I have while going through the difficult times in life. You are stronger than you think. Square your shoulders back and hold your head up high today because you are STRONG even though your body is weak!

My brain keeps me awake thanks to multiple sclerosis

I watched time tick by yesterday morning: midnight, 1am, 2am, 3am. I tried so hard to sleep. All attempts to get Mr. Sandman to pay me a visit failed. If there were any sheep to count I would have tried counting them, but they must have all been out to pasture this morning.

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 at 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 rain and later watching snowflakes form. It had started raining earlier in the night. There’s something incredibly calming and peaceful to me about listening to the plink, plink of raindrops as they fall and it’s even more calming watching snow come down. Maybe I should be counting snowflakes at this hour instead of trying to find some sheep.

As I sat on the couch, my thoughts began to wander. I thought about puzzles, chocolate covered cheese, penguins and lemons. Don’t ask…I have no idea why those things chose to pop up in my brain today. Have you noticed, when you give yourself a bit of time to sit in the quiet of the day, your thoughts can travel all over the place? Some of those thoughts are silly, some confusing and some can be downright scary.

We all need to pause and find a place to rest our thoughts, worries and fears. It seems they come in abundance these days, sometimes just as much as raindrops. I know life gets busy and there’s a long list of things you need to get done in your day, but find a moment to sit and rest all those things rattling around in your brain.

Let the worries wash away like the rain. Let the fears go down the drain. Don’t allow things you can’t change, change you into a negative thinking person. There’s enough negative in the world (just turn on the news for a few minutes if you don’t believe me), you don’t need to add to that with a bunch of what if’s and why’s.

Yes, multiple sclerosis is a terrible disease. Yes, you have to deal with all the crazy symptoms and uncertainties it throws your way. But don’t let it turn you into an upside-down, twisted-up lemon.

Enjoy life. You only have one, so make it the best one you can. Don’t spend your days moping around and 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 a few people to suck on? It will give you a laugh to watch their faces as they do. A sour pucker could possibly cause you to lose your frown.

When life goes the other way

Some days it’s easy to smile. You wake up to the smell of your favorite breakfast cooking, birds are chirping sweetly outside your window, the sun is peaking over the horizon as gorgeous colors fill the sky, and you have no schedules to keep or places to be. It’s a free day to simply be.

But then there are other days. “Other” days can be a terrible hodgepodge of disappointments and frustrations. Where life smacks you upside the head or throws you down a flight of stairs and you don’t even get a chance to defend yourself.

Lately, I have been having more “other” days than “some” days. They have a tendency to steal your smile and bring you to tears. I hate those kinds of days. I wish “other” days could be banned. That we could revolt against them and refuse their entry into our lives. But life happens and “other” days march onward dragging multiple sclerosis along with it.

So, what do you do when you discover today is an “other” day? When you wake up to disappointments, increased symptoms, frustrations and setbacks? When it seems everything that could go wrong is going wrong? When you feel as if you’re sinking and you didn’t even know you were in a boat out to sea to begin with?

There is nothing worse than feeling as if you have no control over your own body or even your life. It’s a lonely place to be. But know that you aren’t alone. There are many people just like you and me that are facing MS along with its challenges and uncertainties, and together we can make it. Don’t try to go it alone.

Surround yourself with people that support you, accept you and love you just as you are. You are important and special even when every thought in your head is screaming at you and telling you differently. No one should ever define you, and MS definitely shouldn’t.

Don’t let MS cause you to give up and stop believing in yourself. Don’t even give it the satisfaction. You matter and you have a lot to give.

If today is an “other” day for you, it’s okay to close yourself up and cry for a bit. But once you have released your tears and shed your frustrations, get up, shake yourself off and charge ahead. Prove to MS, and to yourself, that you are not a quitter. You will overcome!