Multiple Sclerosis makes life hard

Lately it’s been extremely difficult getting my body going in the morning. Now mind you, I’ve never been a morning person, but this kind of slow going is different.

For instance, take this morning…I woke up and lay in the bed a good hour just contemplating getting up. I didn’t throw the covers back immediately as if ready to conquer the day like I have done countless times before. It felt more like the day had already conquered me, and I hadn’t even gotten out of bed yet.

The energy it takes for me to move my legs, let alone use them, seems non existent. I can usually take about 5 steps before needing a break, but even one step seems impossible today. I can’t even talk them into moving across the mattress on their own.

My hands aren’t cooperating either. I’ve punched myself in the face twice already just pulling on my blanket. Then there’s my uncontrollable right hand which has a mind of its own as it shakes and jitters about.

As I lay here in bed, in my mind I have already canceled all of the plans I have for the day.

That trip to the store, it can wait until tomorrow. That dirty bathroom, it will just have to clean itself. Laundry? That’s a nope. My morning get together with friends, it will have to go on without me. Even getting my morning cup of coffee has been put on hold.

I am not a quitter but I have to admit, sometimes my body wins the argument before the argument has even begun. Sometimes my inability to do certain things is not a mind over matter concept but more of a what’s-really-important kind of thing.

I have simplified my life and my surroundings all because of multiple sclerosis. It kind of has this way of weeding out the unnecessary in life…whether that be things or people. But you know, that’s not really a bad thing. As least I know that the people in my life today are genuine and real.

MS may get me down, and at times keep me down longer than I would like, but it still hasn’t won. I am going to keep pushing through the struggles I find myself facing, and if need be I will pause for awhile to catch my breath, but I won’t quit.

MS makes life hard, makes everything hard, but don’t ever let it cause you to give up. You are too valuable, too important, too needed, to quit. Pause, take a breather, nap if you must, but never, ever, ever give up.

Today for me may already be cancelled, but it’s not over. There is still a lot of time to do the impossible. The same goes for you. You can’t give up now.

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It’s true…Multiple Sclerosis is painful

Living in a constant state of pain is grueling, exhausting and tough…really tough. Someone who hasn’t been in that position will never grasp how difficult it actually is to function during a time of blinding pain, no matter how much you try to explain it to them. There is just no way to put that kind of thing into words.

When pain becomes that overwhelming, you find yourself creating your own methods of mind over matter to try and cope. Sometimes they work, but sometimes the pain becomes so intense that you can’t seem to find any coping mechanism to bring relief. That’s when the tears flow, the mood swings happen and you pray with all the strength you have left inside of you hoping that everything will simply stop spinning out of control.

That has been my world these past few days. The pain has been so intense that I found myself hibernating…more for my own sanity than anything else. I know my fuse can be short when my body is screaming at me with that much intensity. I wouldn’t want anyone to be on the receiving end of a faulty mood swing during an I’m-trying-to-cope moment in my life.

Now don’t get me wrong, I truly am a wonderful, nice, calm person…but when I’m hit with excruciating pain that just won’t let up or stop, the monster hidden deep inside of me rises up. I would never be cruel, but I am more apt to say something that might hurt someone’s feelings.

Anyone who says that people living with Multiple Sclerosis don’t experience pain, is full of it. Oh, how I would love to give that person a glimpse into just how painful it can be.

But you know, although the pain is horribly unbearable, I find that somehow the strength I need to push through during those times comes. I eventually get through it and I gain deeper compassion for others facing similar times of pain in the process.

Before MS, I really didn’t get it. Life wasn’t as meaningful or as precious to me as it is now. I took way too many things for granted: people, a good job, strong friendships, laughter, and the freedom to do just about anything I wanted to do.

Now, because of Multiple Sclerosis, I live my life in a constant state of uncertainty and pain. Physical pain and emotional pain. Yet now I find myself savoring every memory and moment I have…even the painful ones. I no longer take life for granted. I value each day, each sunrise, each raindrop, each tear.

There’s no time for petty arguments or silly whining. There’s no point in trying to one up someone just to make myself feel important. There’s no need for meaningless relationships or power struggles. Each moment I’m given, each person I meet, they’re a gift I’ve been given and something I shouldn’t waste or toss aside.

Savor life. Enjoy every moment. Live today regardless of how terribly tough it may be. You are here, alive, for a reason. You matter. You have a purpose. You are loved, valuable and someone that I’m thankful to call friend.

You are a survivor and a warrior. You are truly an amazing person. Never forget that, even in the pain.

Beautifully broken

Have you ever felt worthless, hopeless and more like a crumpled piece of paper tossed into a trash can than anything of value? What is it about living with multiple sclerosis that makes so many people feel like an outcast?

Over the years I watched as my life transitioned into a beautiful butterfly then, bam…MS came along, damaged my wings and interrupted my life. I found myself unable to fly and when I did try, I tended to run into walls or fly crooked rather than soar among the clouds.

It came to a point where I no longer believed myself to be worthy, important or valued, but just because my legs don’t work or my body is weak doesn’t mean I’m of little value. I may drop things easily, fall over even while sitting down and require help opening an easy to open package, but those things don’t make up the person that I am. I am not my imperfections. I am not my MS.

The world has created this image of life. It’s an image of unrealistic perfection. I hate to burst people’s bubble here, but no one is perfect. Seriously! No one! We are all flawed in our own way. It may be because of a disability, a crooked toe or a birthmark covering your arm, but to me those things aren’t imperfections…they are beauty.

Many times in life I have felt like the first cake I tried to make. I spent a lot of time and effort putting together my masterpiece only my attempt at making a cake appeared to be a disaster. Each layer of the cake broke as I was removing them from the pans. I carefully pieced everything together on a plate but I think my icing was a bit too thin or maybe I piled it on too thick because the cake was leaning to one side and looked as if the slightest breeze would send the whole thing toppling to the floor. It looked like something ready for the garage heap.

I discovered in that moment that it was okay to be imperfect. I made no apologies for a misshapen leaning cake, after all cake is delicious in any form. My cake may not have won a blue ribbon, but at the end of the day, every morsel of it had been eaten and enjoyed. Perfect or not…it was pretty darn good. The empty plate can attest to that.

It seems people get tossed away and forgotten way too easily in the world today just because they don’t fit the mold society has created, but that shouldn’t be. Everything has beauty in it…even you, MS and all.

You may be imperfect, flawed, hurting and feel utterly broken at times, but you’re beautiful in your imperfection. MS may limit your abilities and at times cause you to feel alone and worthless, but this world wouldn’t be the same without you in it. You are unmistakably beautiful.

A group of people in Paraguay decided to make music from things found in a landfill…from the imperfect and the broken things that others had thrown away. It’s amazing the music they create from things others carelessly get rid of.

Watch this video to see just how beautiful broken things really are…and remind yourself that you’re amazing just as you are.

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I will never hide my pain

Have you ever had one of those days when you wished you could just curl up into a ball and hide away under the covers in bed because life was simply too much, too crazy and too overwhelming to bear? That’s me today. I woke up in tears…literally. That happens to me from time to time, only today it has hit me really hard. Harder than usual.

I hate when that happens. My emotions seem to have a mind of their own and sometimes no matter how hard I try to remain upbeat, positive and steadfast, I fail. It just goes to show that even people like me who strive to find the good in everything around them actually have times when they wish their out of control life could be put on hold and the pain had a pause button.

I’m human and I’m real. I will never sugar coat the difficulties of living with Multiple Sclerosis and I never want people to think that MS is a breeze to manage. Too many people out in the public don’t hear of the struggles we go through because too many MSers don’t talk enough about the truth of living with a chronic disease.

I am thankful for those living with minimal symptoms and that can handle the pain with ease at any given moment whether it be physical or emotional, but I know for a fact that’s not me. I talk about the struggles I face because I believe that the more the public is made aware of the things we experience, the more they will come to understand the reasons we have our unpredictable mood swings, cancel seemingly simple plans and spend so much of our time at home.

It’s not always easy for me to voice my needs. That’s because many times I don’t even know what I need in the first place. So when someone calls or stops by and asks how they can help out, I don’t always have an answer. It’s not because I’m being rude, antisocial or don’t want their help.  Most of the time it’s because I simply can’t see past the pain in the moment to know what I truly need. That kind of thing requires too much thought and most of the time my brain just blanks out.

But I can tell you this, what ALWAYS helps is genuine care, concern, support and love.  Those things help at any given moment and can be expressed through a simple “thinking of you” text, help around the house, offering to pick up some groceries, or just stopping by for a chat.

My greatest fear is to be forgotten in this fast paced, on-the-go world. It’s easy for that to happen too because many of us get to a place where socializing becomes extremely stressful and is filled with too many uncertainties and obstacles.

Getting out of the house requires great planning and considerations, things that many people don’t really think about. Will the place I’m going to be accessible for my needs? Will I have quick access to a bathroom when needed? Will I be in a place where I can remain cool? If a meal is involved, will someone be there to help me cut my food? If I get too tired (which is normally a given in my case), can I leave early? Does it cost because I live on a limited budget and even small expenditures are impossible to afford?

Any number of questions have to be considered in order to leave the house. Some days those questions are easy to answer, other times they are simply too much to face.

I woke up today with my laugh-box broken because the questions in life smacked me in the face as soon as I woke up. If that ever happens to you, give yourself a break and allow yourself the needed time to grieve. Grieving is a real part of living with MS, and it’s okay to have those moments. Just try not to stay there.

I’ve had my good cry already this morning. The world may never see my tears, but they will always hear my pain. I refuse to be silent in the struggle.

A myelin thief is on the loose

No one knows exactly when it began, but there is a serial kleptomaniac on the loose that seems to only have an interest in myelin: AKA the Myelin Muncher. With all the myelin that has been stolen over the years, you’d think there would be more evidence left behind, but this thief is pretty good at covering all its tracks. It seems to be a professional inside hit job.

Why this interest in myelin? I don’t know. It’s not like you could sell it for a profit. I don’t even think you could get rid of it on the Black Market. It’s an unsolved case shrouded in mystery…the kind where evidence pops up from time to time, yet not enough to lead to an arrest.

It has been speculated that Professor Plum did it in the library with a knife, but then I also heard it was Miss Scarlett in the kitchen with a rope. Rumors have also spread about Colonel Mustard, but at this point they are all just speculation.

The victims: you and I. It seems these myelin thieves are so sneaky that they can break into the Central Nervous System without setting off any alarms. Now that takes skill. It puts us in high alert, code red status at all times, which has a tendency to drain us emotionally and physically.

If you are in the middle of a robbery, hang on. You will get through this. It’s a sad and heart wrenching time, but you will make it. Those who have been robbed in the past can attest to that, but even past victims aren’t safe from future attacks.

It seems that once these thieves have found a way in, they return to the scene of the crime to try again…and again…and again. No one is safe, but don’t let that stop you from living. Stay strong and prove to the Myelin Munchers that you can’t be stopped. Multiple Sclerosis does not win!

I am not my diagnosis

I woke up one morning about 5 years ago and knew something was wrong…really wrong. The day started out just like it always did. My alarm clock buzzed me awake declaring a new day had begun. I sat up, stretched really big and yawned, only as I rubbed my eyes I could tell something was different.

I sat in bed and realized I couldn’t feel the upper right-side of my face. It was such a strange feeling. It wasn’t like I could have slept wrong pinching a nerve in my face. Was that even possible? And I knew an elephant didn’t sit on my head during the night because elephants don’t live in my neighborhood. What was it?

I spent a few days contemplating its cause. I think I was more hoping it would simply go away than anything, but each day I woke up to more of the same as the numbness kept growing to the side of my body and legs. That’s when I became concerned.

My diagnosis was a quick one due to the increasing symptoms that began appearing all throughout my body. The MRIs were indisputable. They showed the damage taking place inside my body. My immune system was having a picnic creating lesions in my brain and spine. The MS monster seemed to be starving and my Central Nervous System was its food.

Ever since that day, Multiple Sclerosis has been tagging along with me trying its best to define me. I’ve tried to shake it loose, hide it away, deny its existence, and even ignore it in hopes it would find somewhere else to live, but no matter what I’ve tried, it seems to simply dig in deeper refusing to move.

For whatever reason, MS has made its home in my body, but even though it is a part of my life, it’s still not who I am. I am not my diagnosis. I am not my symptoms. I am not MS.

My identity isn’t tied up in this disease. Do you know what else I learned? My identity isn’t my career or my talents either. Life changed and in the change I discovered I wasn’t any of those things.

So if those things are not me, then who am I?

I’ll tell you who I am. I’m a fighter who refuses to give up, that’s who I am. Sure, days get hard and many times I cry a bucket full of tears as the world crashes in on me, but somehow I rise above the difficulties. Somehow, I get through the day. Somehow I make it through the struggle.

Don’t let MS define you. Don’t let the bad days determine who you are. With each passing day, you are an amazing warrior standing strong even though your body is weak. Some days the battle will overwhelm you but you will also have days when you will overwhelm it. Stay in the fight. You are not your MS. You are admirable. You are fabulous. You are incredible. You are…well, you are YOU!

Another Multiple Sclerosis day…

I went to sleep early last night after taking a muscle relaxer due to spasms in my legs and hands, a pain pill because the pain was relentless and unsettling, and melatonin to hopefully help me sleep if those didn’t do the trick. I woke up this morning in a daze not remembering much of anything from last night…or from any night for that matter.

It was one of those wake up moments when you can’t remember much of anything about who you are, where you are, or what you plan to do for the day let alone what day it actually is. It wasn’t due to having taken a few pills last night either. I have those kinds of mornings with or without any help from a pill thanks to multiple sclerosis. I call them my amnesia mornings, but at least I slept last night…I think. As of yet I’m still not sure the sleep was productive.

I never appreciated sleep as much as I do now. I either can’t get any or all I want to do is sleep. There’s no in between. I don’t think I’ve actually gotten a good nights sleep in years. I know I’ve never opened my eyes in the morning feeling like I was refreshed and rested. If I ever did, trust me, the world would know about it.

But regardless of how I feel, today is a new day and here I am in my bed needing to get myself going so I can conquer it. Hey, just waking up is an accomplishment, right?! So, I’m already over half way there. Divide and conquer as they say!

You are too. You are already winning the battle of the day. You’re awake. You’re alive. You’re reading this! That’s already a huge accomplishment. You can’t give up now. Take it slow if you need to just don’t stop.

For me, there is so much needing to be done and I can already tell you I have zero energy to do any of it…but I’m ready for whatever life may bring. If I have to take lots of breaks, that’s okay. I will pause as much as I need to, I just won’t give up.

I really do live by the “minute by minute, moment by moment” motto, and at this very minute coffee is calling my name so I’m answering the call.

When the day is over, be grateful for making it through another MS day. I know it’s not always easy, I know the challenges can get overwhelming, I know how alone and isolating MS can make you feel, but you are making it, you are doing it. If no one has told you how truly amazing you are, I will. I’m proud of you for not giving up. I believing in you. You are AMAZING!

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I never asked to get sick

For so many, Multiple Sclerosis is filled with times of intense struggle followed by periods of calm. During the calm a new normal is found that consists of changing how everyday tasks are done and limiting those things that are not as important. Meds, vitamins, diet, exercise, and working to stay as stress free as possible helps to manage the symptoms and life goes on. Years pass by. Relapses happen and with each relapse a new normal is found and the process continues.

I wish I was one of those people. I wish I could say, like so many do, that I have had MS for 20 years and am still going strong or that it’s been 10 years and my symptoms are still the same, but I have never had a period of time when something wasn’t changing. I’ve never really known a relapse. MS has been fast progressing and aggressive for me. I know I’m part of a smaller population of MSers, but I think it’s important for the world to know that not all MS is the same.

Sure, I am encouraged by the stories of people with MS who advance in their careers, run marathons, and are seen on TV giving a face to MS. What bothers me are the numbers of people that think MS isn’t that bad, after all just look at so-and-so on TV or watch this video I saw of how someone follows a special diet and now lives symptom free.

We have done a fairly good job at informing the world that MS exists, but not so good at explaining that it can be cruel, painful, debilitating, and that a cure has not yet been found. Yes, I agree that not everyone will end up in a wheelchair unable to manage life on their own, but it happens and we have to be sure we are sharing both the good and the bad with the world so they know the truth and not just the positive, brave side we like to portrait. Being positive doesn’t mean denying what is going on in your life and hiding those things from others. It’s acknowledging the ugliness of MS and choosing to push through anyway.

I never asked to get sick, to have to quit my job, to live day by day with struggles. That was never a part of my long term goals in life. I work hard every day to stay positive, encourage others and even encourage myself. But you know, some days I have to talk myself into getting out of bed. It’s true. I have even been known to argue with myself as I work up the strength to get a shower to start my day.

It’s hard. But even in the impossible, I see good things around me. I see people smiling because I said something funny. I see strangers extending a helping hand when I’m struggling to get the door open or needing help to get something from the top shelf. I see love in action and joy in some of the strangest moments.

No matter how difficult your day is, look up from your struggle and take a deep breath. What are some things in life that make you smile, that warm your heart, that bring you joy? Hang on to those things today. It won’t make the day easier but it will make the load lighter. MS is different for everyone, but pain is pain, struggle is struggle, change is change. Today is not a “give up” day…it’s a “get up” day.

I have Multiple Sclerosis…hear me roar

Nothing angers me more than people who try to profit off of someone with an illness…any illness, not just multiple sclerosis. People who say, “I know what is causing the disease in your body, and if you will send me $100, I will mail you my book detailing how to rid your body of all that ails it. Better yet, sign up for a monthly mentorship and I will help you one-on-one to discover the hidden emotions, wrongful attitudes and unhealthy foods that are the root cause of your sickness.”

Now don’t get me wrong, I believe that we can cause harm to our bodies and our life if we live it filled with negative attitudes, stored up anger and spend our time worrying about everything that may or may not happen. Negative energies have actually been proven scientifically to harm living things. There are some amazing studies that have been done on this very subject.

But for someone to claim MS is something each person has caused in their own life because they simply crave attention from others, are holding on to unconfessed sins or negative energies, eat the wrong foods, are lazy, simply desire close designated parking, or have somehow lost passion in life…is full of CRAP!

Multiple Sclerosis is real. It’s not caused by a person’s lifestyle, an unhealthy diet, smothered hidden emotions or because we lived a life filled with sin. There is yet to be discovered a specific cause for MS and to this day there is still no known cure.

If people took the time to get to know someone with MS they would find out that we are incredible people.  We are lawyers, doctors, nurses, scientists, teachers, mothers, fathers, artists, musicians, computer geeks, news anchors, cops, soldiers, and personal trainers. We don’t wear MS as a “badge of honor” to flash around for all to see in order to gain the attention of everyone in the room. Most people don’t even know we have MS until there is a visible symptom causing us to use a cane, walker or wheelchair.

We are the type of people who choose to pass up the designated parking spots on days when our legs are moving okay in consideration of others who may need it more than we do. We give from the heart, work hard, are compassionate towards others, and can’t even comprehend the word “quit.”  We are fighters not constant complainers. We push through some of the most difficult times in life with a smile…and a genuine one at that.

We manage life as best we can and learn over time what our body can do and what its limitations are. We actually tend to live a freer life than most people do in society today because we have learned early on to rid our lives of worthless junk and unnecessary people, choosing to focus on those things and people that actually matter.

That’s something the world has lost focus on. The world sees a good life as having the biggest house, best car and a large bank account, but those things are nothing compared to enjoying life regardless of the storms you are facing, spending quality time with family and friends, taking time to marvel at the beauty around us, and creating precious sweet memories that stand the test of time.

We actually know how to live life better than most people. Why? Because we do it every single day in spite of MS. Our stories are continually being written, page after page with each day that passes. Just watch our lives and you may learn a few things about living…probably more than you could have ever imagined possible.

We aren’t helpless, weak, broken, wounded, forgotten people. We aren’t drug seekers or attention hogs. We don’t use MS as an excuse for not living a successful and full life. We are warriors that proudly wear the scars of war…hear us ROAR!!!

It’s hard to stay focused

I was making a shopping list the other day and forgot how to spell the word pencils. In my mind it didn’t even have the letter c anywhere in it. I struggled for nearly five minutes thinking and thinking and then thinking some more about that silly little word. The more I thought about it, the weirder the word became.

It wasn’t as if I was dealing with something complicated like the word prospicience or eudaemonic. Now don’t be too proud of me, I didn’t know those words either until I searched Google for hard to spell words, and I still don’t know what they mean. Auto correct didn’t even like the first word.

My brain has lost most of it’s ability to think deep and stay focused on something for an extended period of time. I rely more and more on technology, friends and good ole post-it notes with each passing day to help me stay somewhat organized.

It used to make me upset that things were changing so much. It frustrated me more than anything, but I’ve learned to not rely on my feelings too much. They have a tendency to mess me up. Don’t get me wrong, I still have moments when I tear up because the reality of my life becomes a bit too overwhelming, just like the other day while making my shopping list. I sat and cried over a word. A word?! Who cries over a word?

Silly, I know…but I have found that we all need a good cry every now and then. It’s not weak to cry. It’s not a sign of giving in, giving up or letting MS take over. It’s simply a pause in life to refocus and let go of the stresses, fears and pain that have had time to build up. Besides, we all know what can happen when you don’t relieve the pressure from a building volcano or a backed up water hose…they explode.

Don’t be too hard no yourself when you break down sobbing in the shower, after getting in the car from a walk across the parking lot, or even because of brain fog moments. Give yourself time to cry, to feel. The most beautiful rainbows I have ever seen have been after a rainstorm, so just imagine the beauty that you will see after the tears. Keep shining, oh mighty one.