Multiple sclerosis happened and it changed my life

One of the most difficult days in my life was the day I turned in the resignation letter that ended my career. I had been raised to take pride in my work and to work hard to make something of myself. Quitting just didn’t fit that mindset. It went against all that I knew. Multiple sclerosis had been whittling away at everything I was able to do making a productive day difficult.

Each day that passed, I could see the drastic decline in my abilities. I was continually missing deadlines and would forget how to do even the simplest of tasks. What I enjoyed so much had become a struggle. I tried for months to make it work, covering up my mistakes with quick witted replies and longer hours, but deep down I knew it was time to make a change. I knew my decline was pulling those around me down and that they deserved better than I was able to give.

The thought of no longer working ripped me apart inside. I knew my work did not define me, but I could feel life changing so fast that it scared me. Life wasn’t suppose to turn out this way. MS wasn’t suppose to happen.

The worst part for me was when my last day finally came—the day I shut down my computer and turned the light off for the last time in my office. There were no farewells or goodbyes, no cakes or cards, nothing to even suggest my entire life was about to drastically change. That day ended just like every other day.

I remember walking to my car doing all I could to hold back the tears. My thoughts were screaming at me, “Doesn’t anybody care. My life is over. I’m scared and don’t know what I’m going to do,” but no one could hear the screams. No one saw the tears.

That night I cried myself to sleep. Depression hit hard. I didn’t want to do anything or go anywhere. My life became filled with PJ’s, TV reruns and tears. The grieving was real and it was slowly taking over my life. The worthlessness I felt was overwhelming.

The emotional roller coaster I landed on took me completely by surprise. After all, I was always the positive one. I was the one that could find the good in anything, but where was the good in a life-long career coming to an end? Where was the good in MS taking away something I loved? I just couldn’t see it.

It took time and a lot of hard work to pull myself out of the despair that swallowed me whole. It wasn’t easy either. I had to keep reminding myself every day that my work did not define me and neither did MS. I would tell myself, “I am who I am, and I’m pretty spectacular and uniquely amazing at that. Not because of what I can or can’t do. Just because I’m me.”

Eventually I stood tall once again, but I have to admit that I still have moments when a gush of tears show up. Even just yesterday as I sat on my couch reflecting on life, tears came.

I don’t think people looking in at my life truly understand the extent of pain and heartbreak I still go through all because of a chronic illness that is slowly stealing bits and pieces of my life away. That kind of crushing and breaking…I hope others don’t have to go through.

If you are in a storm right now, know that no matter how hopeless things appear to be today, there is a brighter tomorrow. Keep pushing through the tears and the pain because you really do have a great future ahead of you. MS doesn’t have the final say. Plans may have to change and you may have to shift how you do things, but you are in charge of your life and you can accomplish anything you set your heart and mind to.

Give your heart time to heal. I know it’s scary…the unknown. I know it’s terrifying to take a step forward when you can’t even see the road in front of you, but regardless of how you feel I can tell you with confidence that you aren’t a failure, stupid or broken. You are a somebody…and being a somebody is the best thing anybody could ever be.

MS Gets on My NervesMS WarriorMS Superhero

 

The rouge monsters in my life

I have an armadillo problem. Really, I do. I woke up two days ago with a call from my neighbor asking if I had looked out at my front yard. I hadn’t yet and she told me there was an armadillo causing chaos around. Her backyard was one and my front yard was another. What destruction those creature create. I now have drag marks and holes from their rooting around for bug and such to make a meal. They are such pests. It’s been raining a lot so there was plenty of loose mud to them to dig through! That’s not the kind of thing I like waking up to. Hopefully it will find some place else to dig. Wasn’t an expected morning, that’s for sure.

I got a call yesterday from the neurologist letting me know my MRIs were what was suspected. All was calm in my brain and spine just more destruction which is why I have increased problems with weakness, etc. Nothing new there so that’s good. Now if I could just get rid of a rampant armadillo and a crazy uncontrollable MS monster, i’d be in business!

One thing about me if you haven’t figured it out yet, I’ve never been a follow-the-crowd kind of person. I have always set my own pace and marched to my own drum. I think I was born with that type of mindset and purpose. Being different was my normal.

Growing up I never dressed like everyone else or listened to the music others were listening to. I developed my own style and my own taste in music. I was more a ‘sit alone and dream’ kinda person than someone sitting at the popular table. I knew if I was to be accepted into the popular crowd all I had to do was talk like them, eat like them, dress like them…basically be them. But that would require me to sacrifice my own peace and happiness. Even back then I had a joy that I brought with me which others couldn’t take away. It was the joy of me simply being me.

It takes a brave heart to be different; to realize that your worth and value doesn’t come from being like everyone else. When you are faced with multiple sclerosis, it is so tempting to follow the crowd. I discovered that all the time I spent trying to find the popular way of living was time I took away from actually living…time I could never get back. I spent hours, days and weeks looking and searching for what everyone else was doing to help them live better with MS. Some of that was truly needed, but there comes a point when your life gets so consumed with searching that you forget to live.

I want to be as healthy as I can be for me so I can live as best a life I can live, but I don’t need to find a miracle food or chase after the latest pill. I’m okay and at peace simply living. We make life so hard but in actuality it’s so simple. You really can be happy and full of peace even when surrounded by chaos.

What does your life mean to you? Your happy isn’t someone else’s happy. People are so good at putting guilt trips on us to try and shape us into the person they want us to be, but now is the time for you to be you. You will never truly be happy until you do. Being different and following your own path is the best decision you could ever make. It settles the heart and calms the mind.

Your life will look different than other people’s lives. You will do things different, move different, talk different, eat different, and be different. You might not be sitting at the popular table, but who cares! Don’t let anyone try and talk you out of your happiness by trying to tell you that they know what you need to be happy. You get to decide.

After all, it’s your life! Get our there and live it. Just if you happen to see a rouge armadillo out there or an extra sneaky MS monster hanging around, you have my permission to kick their butts.

MS Gets on My NervesMS WarriorMS Superhero

 

My Rant: why do people have to be so rude?

You can call me a bad person if you want, but when people are rude, hurtful and insensitive to someone with a disability, it infuriates me. It doesn’t matter what the disability is either. Actions like that are self-centered and simply uncalled for.

Over time, that anger builds up and I get to a point where I want to blurt out about my own disability, “If you could live in my body for just one day, you wouldn’t be so cruel. You’d realize that each day is a fight just to get out of bed. Some people with a chronic illness may be able to run marathons and work full-time jobs, but others have progressed to a point where it’s not even possible to brush their own teeth without resting first. Don’t fit me in a box and try to make my life fit into your way of thinking by refusing to even try and understand the battle I am facing everyday.”

(Okay, I’m off my soapbox now. Boy, did that feel good. Sometimes you just gotta let it out.)

If people could set their ego aside and step outside of their own self-made bubble, they would be able to see the pain and feel the hurts that are in each disabled persons life. I have days when the pain is horrible and the tears flow easily…both physical pain and psychological pain. There have been times when I couldn’t get out of bed because my legs wouldn’t cooperate, and other times when I couldn’t take a shower because I was so unsteady I just knew I would fall and hurt myself. I have other times when the struggle of just another day filled with limitations gets the best of me.

I truly wouldn’t want anyone to have to go through multiple sclerosis or deal with a disability, but I think it would be a welcomed option for some people because it would silence their hurtful words and cause them to think twice before acting in such a rude and heartless manner again. Many of you have shared your story with me of the hurts you carry due to the insensitivity of others. It breaks my heart to hear of the pain. If you are surrounded by those who get it, hold onto them…they are a keeper!

So, how do you cope in a world that overlooks the battle you are fighting each day? How do you deal with people who consider you a hypochondriac just because they can’t see your pain or understand your struggle? How do you face a day when you know you will spend it in tears because you feel so isolated and alone?

I know it’s not easy, but you have to hold onto the hope that there will be a better day tomorrow. Hold on for your kids, your spouse, your family, and your friends. Hold on for YOU!

You need a rest from the fight and to allow your thoughts to settle down. If you need to cry, go ahead and cry. If you need to scream, it’s okay to do that too. Let your frustrations and your anger out, then pause, collect your thoughts, pull yourself together, and step out into today.

MS Gets on My NervesMS WarriorMS Superhero

 

sunrise

I woke up today and for that I’m thankful

This morning I woke up before the sun. I didn’t plan on it but the pain in my body and muscle spams wouldn’t let me sleep. So how do I get through a day when I’m sleep deprived, in pain, have constant muscle spasms, and am miserable?

For me, I try to put things into perspective in order to not get so overwhelmed with the storm I am living in. Multiple sclerosis can absolutely be horrible to deal with, but I’m alive…and for that I’m thankful. I also had a chance to write a post which wasn’t easy since I hunt a peck to put any sentence together. I am no longer able to type 80 WPM and I have yet to master Mac accessibility typing or Dragon. I want to correct everything the computer does wrong as I go, making it hard to finish a thought. I know that’s not how things are done but that’s the only way my brain works. For the fact that I even have a post today…I’m thankful.

I had to come to place of understanding that MS is now the center of my world and the place I need to put my focus for my own personal well being. Others won’t see that need so I have to make it my own personal goal. That’s not me being selfish…that’s me taking care of myself.

I have discovered over the years that I’m the only person who wakes up with me in mind. I’m the one wanting to be a better me, to have a more meaningful life, to do something to improve my health, and wanting to ease my burdens. Others may have a passing thought of me, but I’m the one actually living my life. Why don’t I put more importance on taking care of me?

I have made a choice of following a daily exercise routine, doing better with the foods that I eat, and resting more throughout the day. Just making those changes alone have made my life more bearable. Who would have thought self care could be so rewarding?

Yes, I’m that important. Yes, you’re that important.

Instead of focusing on how bad you feel and how difficult a day can be (choosing to have an internal pity-party), be determined to find the parts of your life that are a joy. There is good in every day. If you are only focused on feeling bad for yourself and all you are facing, you will miss it.

Don’t miss the good in today. Pause and take a moment to realize just how much you have to be thankful for. Thanksgiving shouldn’t be the only day we stop to think on those things. Do it today. Make today your day of thanksgiving. What are you thankful for?

A new year has begun with multiple sclerosis

It’s hard to believe a new year has begun. As they say “out with the old, in with the new,” right? As I reflect over the past year, I realize I have experienced some truly wonderful, beautiful moments. Times that made me sing even though I can no longer carry a tune. Times that gave me great joy and created memories that I will hold on to for the rest of my life.

It was also a year filled with pain, weariness and sorrow. Those are the times I wish I could forget but know I won’t because those moments are still a part of who I am. If nothing else, they have made me stronger. And trust me, I need all the strength I can get right about now.

Last year at this time, I was working to regain the use of my legs. And although my legs never returned to their full function, does that make me sad? Angry? Fearful? Sure. But I’m not going to let my disability stop me from living even if I do it from a chair.

My daily routine is different now. My needs are different. The things I consider important have changed. But me…I’m still me. No amount of ability or disability can change that.

Think back over your year. I’m sure you’ve had both beautiful and terrible moments. Times that make you still smile to this day and others that bring tears to your eyes. That’s called life…and you lived it. You experienced it. And although your experiences have changed how you do certain things, why you do them and when you do them, they haven’t changed the person you are. You are still you.

You may live life differently than you have in times past. You may need additional tools to help you get through your day. You may get tired and weaker faster than before. You may even do everything slower, but you are still you. YOU ARE NOT MS.

You are an amazing, beautiful, lovely, precious, delightfully unique individual. There is no one else in the entire universe like you. You have so much to offer the world, even with a disability.  Don’t allow MS the satisfaction of stopping you from enjoying life or even from enjoying today.

With a new year in the making, choose to be thankful for all the beauty to be made. I can’t promise you that the new year will be wonderful and void of any pain, but I can promise you that together, with each step along the journey, we are building a path that just may ease the burdens of those that come along behind us.

MS may only leave destruction in its path, but we are leaving a legacy of strength, resilience and beauty. You didn’t know you were doing all that, did you?  Don’t ever underestimate your value and worth. You are priceless and those bricks you are placing along the way…well,  they just might be rubies and emeralds!

MS Gets on My NervesMS WarriorMS Superhero

 

Multiple sclerosis has given me superpowers

I have been known to fly across the room from time to time. I can create amazing take-offs and landings too. I teleport things like my keys, the TV remote and even my phone to strange places in order to keep them safe from thieves. Who would think to look for those things in the dishwasher, microwave or the freezer. And one ability that has become annoyingly prominent lately is supersonic hearing. Really, it’s true.

It’s amazing how many faint and normally unnoticed sounds I hear. Just today I noticed that when I shuffle papers around on my desk it sounds more like a tornado getting ready to touch down than actual paper.

I have started setting my TV volume really low most of the time because I can actually feel the sounds rattling around inside my head when it is turned up. It’s not very comfortable having sounds rattling around in my head like that.

And one of the worst moments is when I’m in a room with a group of people talking all at once. All the voices and sounds bouncing around in the room start bouncing around inside my head too. It’s almost as if the nerves in my ears go into overload and I just want to throw my hands up and tell everyone to shut up.

I find myself sitting in the quiet more now just because it’s so calming. No music, no TV, no chatter…just me, my coffee and my computer. It’s funny, even typing on my keyboard starts to get to me after a while. Of course I do more hunt and peck now days so it’s not as loud as someone typing 70 words per minute.

I noticed that my hearing has become so sensitive that any sudden or unexpected sound catches me off-guard and I jump like crazy whether it be a ring-tone on my cell phone, a knock at the door, the buzzer on the dryer, or even the new mail sound on my computer for my email.

I can hear whispers from across the room too, but don’t tell anyone. I don’t want people to know that I can hear their secrets. Shhhh!

What amazing creatures us MSers are. I wonder what new superpower I will discover hidden away in the shadows of my day. Oh, wow. Did you just see that? I I can melt an ice cube just by staring at it, and with a little bit more effort, I can even make the puddle disappear too.

Multiple sclerosis is amazing!!! What’s your superpower?

MS Gets on My NervesMS WarriorMS Superhero

 

Don’t give up… you are not alone in this fight with multiple sclerosis

You don’t realize how many mornings I wake up and find myself unable to motivate, encourage and uplift others. Sometimes I am so down that I don’t even think I have anything left to actually give. Today is that struggle for me. I have often asked myself, “Who encourages the encourager because I could use some of that about now?”

But you know, somehow after I contemplate throwing my hands up in surrender and giving up, I find a bit of hope tucked away in the corner, a grin hiding in dust and a giggle sneaking around… and it strengthens me. My thoughts of you strengthen me… a fellow warrior because we are in this together.

I know many of you face the day feeling the same way. You wake up feeling defeated even before the day actually starts. All motivation flies out the window or gets swept under the rug. I want you to know that you are not alone when you feel that way.

Multiple sclerosis is kicking my butt. Lately I can’t hold onto much. Even my iPad is too heavy for me to hold onto. I think I dropped it at least four times yesterday. Dizziness is a constant, weakness is increasing, my vision is wonky, and brain fog… wait what was I saying again.

I set my alarm to go off at 10 AM yesterday but when it went off, I forgot why it was even set. I am finding I need reminders for reminders and even then I forget what I was trying to remind myself of. Ugh! It’s such a vicious cycle.

One thing that encourages me is you. It’s true. You always remind me why I am doing what I’m doing and just how much you appreciate my efforts. You are my inspiration. You are the reason I do what I do. You laugh at my sarcastic, witty social media posts, you smile at my musings, and you encourage me on days that I need it the most. That is priceless.

Thank you for that.

If you are feeling defeated today, hang in there. There is still something left in today that is worth the effort. It may be tiny, it may be silly, it may be hard to find, but it’s worth the wait. Hang in there and know that you are too amazing and too important to end it all now.

Yes, depression is real and tears flow sometimes more than we care to admit, but know that you are not alone in this fight. You are going to get through this day. Take a break or even a nap if you need one. It really is okay to not have everything all together. You are only human and even humans lose it from time to time. Give yourself permission to break down. Then take a deep breath, shake off the defeatist thoughts and move forward. You got this!!!

smiles

You know you’ve had multiple sclerosis too long if…

Multiple Sclerosis affects everyone differently, but even in our differences we have similarities. It’s interesting to sit in a room full of people living with MS and hear their stories. Some make you cry, some make you laugh, but they all make you thankful because you know you are surrounded by people who understand.

I have posted this list before, but it never gets old. As you go through the days ahead, it’s important to find humor in the struggle. Laughter is powerful and infectious. I never thought of it like this before, but infections are contagious and I think laughter is one thing worth catching. I hope this give you a laugh today…or at least a smile.

You know you’ve had Multiple Sclerosis too long if…
  • You know what CRAB meds are and have experienced firsthand how they can make you crabby
  • You have a collection of canes in your house, in your car and at work, yet try not to use them as much as possible
  • You’ve been mistaken as one of “Jerry’s Kids” more than once
  • Side airbags on barstools and chairs sounds like a great idea
  • You know the taste of Solumedrol and have felt empowered during infusions to help people pack, push their car to a gas station or shake the leaves off their trees
  • The phrase “stop, drop and roll” has a new meaning to you
  • You climb Mount Everest every day just by vacuuming the floor, shopping and cooking dinner
  • You put your cell phone in the refrigerator, the orange juice in the dishwasher and your house keys in the garbage…and are always surprised when you find them
  • You have a disabled parking hang tag yet refuse to use it most of the time
  • Roller coasters are no longer your friend
  • Random people approach you with a cure because they’ve heard it worked for a friend’s relative’s neighbor or for some random person online
  • “I’m fine” is a standard reply to someone asking how you’re doing
  • You know what an MS Hug is and have yet to figure out why it’s so huggable
  • You have developed new ways to open packages, clip your fingernails and style your hair, and could probably patent your ideas
  • You are an expert at falling up the stairs
  • You are never the designated driver when out with friends because you might get pulled over for drunk driving and have a hard time explaining that you’re sober
  • “Nap” is no longer a bad word
  • You have post-it notes, calendars, lists, alerts and alarms to keep you organized and still forget things
  • You have created new words that should be added to the dictionary under a section called “MS Jive Talk”
  • You’ve discovered that the people who you thought were your friends really weren’t, and those you didn’t realize were friends really were
  • You know what it feels like to be electrocuted even though you’ve never put your finger in a light socket before
  • Your pain tolerance has increased but tolerance for stupid people hasn’t
  • You smile just to keep from crying

And just when you think you can’t go on…watch this and keep on laughing! It’s contagious, you know?!

Every day the ninja living inside me kicks some multiple sclerosis butt

I understand how it feels to be drowning in medical bills, strained relationships, physical and mental exhaustion, stressful decision making, and demanding responsibilities. Add to that the fact that I’m living every second of every day with multiple sclerosis and I might as well just crawl back into bed each morning before the sun even comes up and call it a day.

Somehow we face the impossible every moment of every day and yet as the day comes to a close, we always seem to make it. Many times I find myself climbing into bed feeling beat up, worn out, battered and bruised, but as I lay my head down on my pillow and take a moment to look back over the day, I realize that the ninja living inside of me kicked some MS butt.

Some days I push through crazy traffic with my legs and hands cramping up while my head is spinning making for an interesting ride. Most of the time it feels more like I’m on a roller coaster than an actual highway. The worst thing is when I get to the place I’m going to and I don’t quite make it to the bathroom in time. Those times happen more often than people realize. Thankfully I keep a change of clothes in my van and people don’t notice the magical change I make from black to tan pants.

As the day goes on I make mistake after mistake because I can’t keep my brain focused. Most of the time I’m pretty good at covering those kinds of things up. It takes great skill to stumble over words then turn them into something that makes sense. I think I’ve mastered the art of word replacement, finger pointing, hand gestures, and usage of the words thingamajig and doohickey fairly well.

Somehow I even manage to keep from burning down the house after forgetting about the casserole I put in the oven. Sure, it’s a little charred, but I am now an expert at scraping off the burnt parts and still producing something that’s edible.

Today may be an awful day for you, but it’s not the day you give up…even though you have every reason to do so. Instead, it’s the day you push through and remind yourself that if you can make it through the terrible, horrible day you had a few days ago…then you can surely get through today. Let your inner ninja loose and kick some MS butt.

Hiyah! KA-LAPOWABOOOM!

MS Gets on My NervesMS WarriorMS Superhero

 

A life with multiple sclerosis is hard…that’s just me telling it like it is.

A life with multiple sclerosis is hard. There’s no nice way to put it. I could lie and tell of all the cool things life brings to sway you to the opposite side. I could give you a bunch of blessings and sweet moments that have happened along the way to change your mind but I would be fooling myself. Those people that say life isn’t hard, you’re just living it wrong…I’d like to smack them upside the head or strangle them. They aren’t living in reality.

I have to admit, life is hard and don’t feel one bit guilty for saying so. Everyone’s life is hard no matter where you are from or what you are dealing with. The main thing with me is I try to focus on one thing at a time. I don’t have the energy to lump everything together to focus on a pile of things. Every day is a pick and choose adventure into the unknown and the uncharted. Some days I come out unscathed and some days sadly I don’t.

The one screaming at me the loudest gets the attention. Today, that happens to be pain and weakness. It may change as the day goes by, but that’s where my focus is right now. I will do some stretches and get my muscles moving which always seems to help. It’s always good to get things moving even when you are limited is what you can move.

My bathroom renovation is still in the works and I will be happy to finally have a bathroom completed that is accessible for me to use. I was told it will be this week or next week. I’m excited. I will take pictures and share them with you as soon as I can.

But those people that insist life isn’t hard need a moment living with a disability. They would change their tune quick. I’m just happy the sun came up today for a glorious morning without rain. It’s cold out which gives me trouble moving, but I will keep trying to move anyway. I at least have an excuse to veg on the couch as the workers come today.

Don’t give in to the difficulties that come along the way. Some can be conquered and some can’t, but that’s okay. I have come to a place where I’m okay with the smallest of progress, no matter what it may be. Do what you can. That’s what matters. No quitting allowed. And look for the sweet moments that come along bringing an unexpected change to your day. For me, I saw deer playing in my back yard which I always love to see. It gives me something to smile at.

MS Gets on My NervesMS WarriorMS Superhero