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Living with MS you have to make a choice: Fight or Give Up?

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In this crazy mixed-up world I can’t stop thinking about all that has to be done just to hold our heads up. Between health issues, worldwide troubles, unpredictable wars, economic downward spirals… where can you turn to remove yourself from all the chaos and really do you want to?

I think of my father in these times. He grew up a farmer but was drafted into the army at a young age causing him to have to leave behind the farm life. He didn’t have much of a career choice at that point. He worked hard and transformed into a great soldier.

He took what life gave him and became the best he could be with the hand he was dealt. I am convinced that if he had the opportunity to go to school he could have become a doctor, a scientist, an artist, or even a carpenter. He was all of those things to me. His life ended early, but his legacy remains.

He taught me what it means to be strong and courageous. I saw first hand the life of a soldier: the struggles, heartaches, pain and fears. Yet through it all, he never complained that life wasn’t fair (even though it was) or looked at something as an impossibility. He lived a full life to the end and gave it all he had.

Because of my father, I am who I am today. He instilled the determination, courage and resilience of a soldier in me, only I’m in a different battle and fighting a different fight. The tactics are still the same though. I have chosen to take what life has handed me and to become the best that I can be.

You are in a battle too. Yes, there will be struggles and pain. There will be times you may be fearful of tomorrow or even of the next step you need to take, but you are soldiers, and soldiers march on. You don’t lower your weapons or lay down in defeat. You push to the end and give it all you’ve got.

Each morning when you wake up and open your eyes, before you even pull back the covers, you have to make a choice. Fight or Give Up? Which will you choose? Are you going to let the fact that you have to crawl through the trenches just to get your day started cause you to wave the white flag of defeat? Are you going to let the opinions of others and their negativity keep you from advancing?

My answer is no, I will not. Join me.

We are fighters, not quitters. We are soldiers in this battle with MS. We are thousands strong standing shoulder to shoulder and linked arm in arm. Together we fight.

When one of us is wounded, we come together to hold that one up. No one is left behind. We are powerful! We are brave! We are unstoppable! We won’t back down and we will never give up.

“Impossible” is not a word in our vocabulary. We prove that to be true every day. Get rid of the complaining, walk away from negative people… they will only weigh you down and hold you back. Remember, you are not alone in this fight. Now, let’s get out there and kick some MS butt. Oorah!

You are a survivor

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Unlike many people, we’ve endured the diagnosis of multiple sclerosis. It’s a story some of you know very well. For me it was a quick process due to my MRI results and my prevalent loss of multiple bodily functions. But I know for others it was a long and arduous development with one appointment after another, yet nothing being found definitively sometimes for years.

Oh, the heartache. Oh, the worries. Oh, the concern of what is actually happening and when will it end. When the diagnosis takes place there is a moment of relief knowing that you aren’t going crazy. That there’s an answer to all your troubles.

Through it all, I have to say… you are a survivor. It took me a little bit of time to figure that out for myself. I was caught in such an out-of-control whirlwind that I couldn’t see anything around me that made sense anymore. But then I saw it. Hidden behind the appointments and around the newly discovered symptoms, there it was plain as day. I am a survivor. I’m not healed and as of today am not healed. But I have survived and each day I am surviving.

But why? That was the question I kept asking myself. Why have I survived? Why is this my life now?

I don’t know why I have lived through it. I don’t know how I have lived through it. But what I do know is that I have emerged stronger and with a clearer purpose. Whether you believe it’s God’s gift or just sheer luck… you have been given a second chance in life and I encourage you not to squander it or dwell on why you were chosen.

We make choices every day. Some are clear to make and some not so clear. But I believe we have been chosen to rebuild this MS community we find ourselves a part of as we rebuild ourselves. Some of us will rise to the challenge, other’s won’t. But we will all ultimately survive because we already have.

Let’s be honest. You’re a survivor.

I like how Lori Goodwin said it… “Even in times of trauma, we try to maintain a sense of normality until we no longer can. That, my friends, is called surviving. Not healing. We never become whole again … we are survivors. If you are here today… you are a survivor. But those of us who have made it thru hell and are still standing? We bare a different name: warriors.”

So fight on… my MS Warriors. Fight on!

Don’t ever apologize because you are hurting

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Have you ever expressed a concern or talked with someone about a new multiple sclerosis symptom you are experiencing without a “woe is me” attitude and their response was just get over it? I’ve always thought that to be a strange response. Get over what exactly? Get over the pain? Get over the fear? Get over a chronic illness? What exactly am I to be getting over?

How do you get over something that you live with on a daily and minute-by-minute basis? “Oh, today I’m going to ignore the fact that my legs don’t work, get over it and walk across the room.” Really? And that’s supposed to make multiple sclerosis go away…ignoring it and just getting over it? Yeah… No, that doesn’t work.

Don’t ever apologize because you are hurting or needing help. It’s like being sorry for being real. Don’t allow someone’s response to you cause feelings of guilt just because you are having a challenging day. You are the one living with MS and you have the right to feel what you feel. Most people with MS hide their struggles for that very reason. They don’t want to be thought of as a burden because they know their pain is ongoing and invisible to the onlooker.

Unfortunately, there are people who are unequipped, ill-equipped and wrongly equipped to be helpful to a person living with a chronic illness. If I had a broken arm, I would have people pouring out their concern and desire to help me open doors and carry a pile of books, but that’s because a broken arm is temporary and the need is visible. Once the bone mends and the cast is removed, the need for help is no longer there. Life goes on as it always was and no one has to open doors or carry books for you any more.

But unlike a broken arm, a chronic illness is ongoing. It doesn’t simply go away as time passes. That’s why it doesn’t make sense to expect someone who is going through pain, weakness or any other MS struggle to simply “get over it” as if it’s a decision that can be made.

Most of the time people who give that kind of advice, if you want to call it advice, are at a point of frustration within themselves because they are being inconvenienced. They actually say what they say because in reality they want you to be over it so they can be spared having to deal with your challenges. Most people want to help others out, but they want you to feel better thus sparing them the inconvenience of having to adjust their own lives to accommodate the unexpected. They are thinking of themselves.

I promise you that no matter how hard life is right now, you are not “too much” or someone that is weighing other people down. As I’ve said many times before, remember that you are not a burden, you HAVE a burden which by definition is something too heavy to carry alone. Don’t be afraid to ask for help. The ones who are meant to stick around will ask how they can help lift that burden whenever they can. Let the others go.

Above all, remember that you are loved. I know it doesn’t feel like that right now, but it’s true. An MS life can be remarkably hard. We’re not invincible. What one person can handle can be too much for someone else. It’s not about how strong or weak you are, you’re just a person trying to make your way through the craziness of an MS life like many others. Give yourself some credit for pushing on despite how intense things are right now. You got this!

What being brave feels like

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I know how hard it is to push through the murkiness and brain fog that surrounds you all because of multiple sclerosis. You don’t deserve the troubles it brings to your life. You didn’t cause it and you can’t seem to escape from its hold on you.

It’s almost like you are stuck in a pool of quicksand that feels more like concrete than murky water. At least with murky water you can move and keep you head above the water line. With concrete you just sink to the bottom like a rock.  I have had my fair share of bottom sinking moments. I have the bruises and broken bones to show for it.

At those moments all I know to do is cry. I don’t feel very brave when that happens. Do you know what makes me feel brave?

I feel brave when I stand up and don’t let people tell me who I am or am not.
I feel brave when I face the monster that has tried to destroy me even while shaking in my boots.
I feel brave when I hold someones hand so we can face this journey together.
I feel brave when I put on my socks without falling over.
I feel brave when I ask someone for help.
I feel brave when I tell someone to their face that I will not be treated in a certain way.
I feel brave when I stand my ground about the medications I will or won’t take.
I feel brave when I tell someone how much they mean to me.
I feel brave when I make it through a day with less battle scars than the day before.
I feel brave when I manage to get out of bed while my body is screaming at me to just go back to bed.
I feel brave when I use the toaster without jumping out of my skin when the toast pops up.
I feel brave when I know that MS can’t sink me.
I feel brave when I actually enjoy my alone time without feeling guilty.
I feel brave when I help someone else to be brave in the face of what they fear.

Keep fighting the good fight. Peace, love and lots of chocolate to you…

Do you suffer from comparison-itis

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Comparison is one of the greatest diseases in this world and we are taught to do it from birth. From birth our parents start comparing us with other children. Simultaneously, our teachers and coaches compare us with other children.

This is the greatest disease because everybody is born unique, and comparison is simply not possible. Just as we are all unique and cannot be compared, it is the same with illnesses. There is NO illness worse than another. ALL illness is terrible.

When a person compares someone who has multiple sclerosis with someone that has another illness… they are speaking from a lack of understanding and through filtered lenses. No one can know what someone is experiencing unless they crawled into that person’s body to feel what they feel, and experience what they experience.

One of the worst experiences is when you share your multiple sclerosis journey with someone and they proceed to tell you how their approach to MS or some other ailment is the only way you should be living? That you need to adjust your diet and get rid of meat, diet soda, and gluten. That because you go to a doctor and take meds, you are doing it all wrong? That you wouldn’t have the struggle you are having if you would just do things their way? That if you only ________ (fill in the blank) you would feel better?

It can get extremely frustrating when someone assumes they know your body and your journey better than you do. Comparing illnesses or even progressions of the same illness between two different people never works. When someone does the comparing like that, they have fallen victim to the greatest disease in the world… comparison-itis! But take heart, there is a cure… an adjustment of the attitude works 100% of the time.

Stop comparing, stop complaining… and start loving, caring, and nurturing one another.

Needing help for the annual website costs of Positive Living With MS. Any amount would be a tremendous blessing and give my blog and social media presence further reach to people living with multiple sclerosis. Caregivers, family members and fellow MSers have always enjoyed my writings. Many say that they would miss me terribly if I would ever go away. That I am a light of hope and encouragement that helps get them through their day. I was diagnosed with PPMS myself in 2013. Most of my writing is about my own experiences. I try to mix in humor as well as the reality of what life is like living with MS. Because of the hopeless living with MS, I get up to face another day. Because of them, I give of myself and keep pushing forward. Because of them, I won’t quit. Living with multiple sclerosis can be lonely at times, but I will do everything I can to to bring a little sunshine into a darkened world filled with despair… and to show other MSers just how special and important they really are.

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No matter what happens, it will be okay

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I had a rough night last night. I’m not sure what happened but I spent my night hugging a bucket as nausea took over and I spent my time vomiting. I had a fever too and even had to turn my air conditioner on full blast for a time just to get comfortable. My stomach muscles worked overtime to empty out my system. So, now I’m empty but have yet to drink anything because last night it didn’t end well when I tried. I want a little bit of rest first before I try again.

That has never happened to me before to that extreme but I’m glad everything has calmed down a bit. I wonder if it was due to a new medication I took yesterday. It must have disagreed with me and sent my system into a downward spiral. I normally can’t take many new meds even aspirin or something disrupts my cellular response. At least I know what to avoid in the future.

That kind of thing happens a lot with me. Multiple sclerosis has put a kink in everything I do. I had forgotten how hopeless life can become when new problems happen out of the blue. At one time the difficulties had me hating everything… including life. But then my new MS friends changed everything. They understood the unusual reactions of my body. Maybe not really understood them, but they knew that they would happen and how to go with the flow.

Over time I have come to realize the life that I have. The spirit that I truly have. I may have troubles, but they won’t take me down for too long. Life is a gift. It’s special and beautiful. And life is what we make of it. No matter what happens even when it seems like the world is crumbling around you, if you have a support system with even just one friend you know that everything will be okay.

Life will go on, the sun will rise on a new day, and the rainbow will come out after the storm. No matter what happens, it will be okay. That’s my view of life right now. It may be crap at times, but everything will be okay. Troubles will come, troubles will go, pain will come, pain will go, life will expand and life will grow, I just need to make sure I’m nurturing it and filling it with hope.

Even if you can’t do something as you once could, you have to keep trying. Be calm, be brave, don’t quit on life and never quit on yourself. The world needs you. I need you. You are the reason I’m up today and sharing my thoughts and experiences. Thank you for just being you and accepting me for who I am. I’m doing the same for you. Gentle hugs coming your way… xoxo

A monster called multiple sclerosis

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Growing up I remember being afraid of monsters. They lived under my bed and were going to eat me. I had to make sure not to hang my feet or hands over the side of my bed while I slept. Somehow my magic blanket protected me. It seems monsters are afraid of blankets.

As a grown up, my monsters changed. They still try to scare me but in different ways. I have to be sure to keep my heart and mind protected from their scare tactics. That’s where they try to gain control over me.

Fear is a powerful thing. It can paralyze you and steal your peace.  I found the biggest thing when it comes to monsters is to be careful in how you look at them. The monster called multiple sclerosis had crept into my life and tried every tactic it could to scare me and keep me from living.

What if I end up in a wheelchair? What if I die early? What about all the pain and uncomfortable moments that will happen? So many unanswered question that have a potential of scaring anyone living with a chronic illness. But the what if’s aren’t guaranteed and most of the time they don’t happen as bad as thought or even at all.

At first fear was good at keeping me from doing things that could hurt me but then I realized I was able to do more than I thought. The only voice I should be listening to is the one in my own heart. No more shadowy whispers or monster growls to keep me from doing things or from being myself.

Haven’t we all allowed fear, at one time or another, to become bigger than the reality of life itself? As a child, I allowed fear to take from me, but what was I truly afraid of? A monster, a shadow? Really?

There’s always going to be monsters in this world. It doesn’t matter where you are or what you’re facing but I promised myself I would never let monsters scare the life out of me again. And that’s how I live my life. Just remember that it’s ok to be sad and it’s okay to be afraid.

I still catch myself thinking, “There is always tomorrow. And what will tomorrow bring? Will it have monsters and creatures and scary shadows?” I can’t tell you what tomorrow will bring… but tomorrow doesn’t have to be scary when hope is lighting the way.

The ugly side of multiple sclerosis

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I hear people talking about multiple sclerosis like it’s no big deal, after all the girl down the street has MS and all she had to do was just change her diet and take some organic supplements, and it all went away. So I must be doing something wrong. Really? I wish that was true.

MS is not a figment of my imagination. It’s real and despite everything you read about it online, it’s not curable yet. Just so you know, it’s not caused by a lack of blood flow to the brain, or caused by not eating right or not spending enough time outside. It’s not even because I don’t exercise enough, have lived a bad life, or haven’t been praying enough.

If you could see the inside of my brain and spine you would see the damage in there. It looks like a battlefield with destruction all over the place. My central nervous system has been attacked by my own immune system which I call the myelin munchers.

You see, our nerves have a coating around them called myelin. It’s a lot like the wires hidden in the walls of your house that supply power. There’s an insulated coating around each wire to keep it protected.

Well, the coating around my nerves have been eaten away. As soon as they were exposed, my broken nerves started shorting out and causing all kinds of problems. That’s why my legs don’t work, my vision is blurred, my muscles spasm and twitch, and even why my body is weak.

I wear a smile most of the time but that doesn’t mean the disease isn’t there, it just means I’m doing a pretty good job at covering it up. I should win an Oscar for my performance everyday when I go out in public.

You see the mask that I wear but let me tell you a little bit about what is actually being covered up. Let me tell you  about the ugly side of MS. Too much of the world doesn’t know that it exists.

Relapsing Remitting MS (RRMS) is one type of MS. A majority of people diagnosed with MS have this type. I got to be one of the lucky ones to have a progressive form of MS called Primary Progressive MS (PPMS). Mine just gradually and continually gets worse. I don’t experience times when my MS symptoms subside or get better.

In the back of my mind I know that one day my future will be drastically different than it is today. Although today I may be moving around ok, tomorrow I may not.  I’m the same person I was before MS came along but I have learned a lot about myself in the process.

MS has taught me to be more caring, compassionate and loving towards others. It has humbled me. No one wants to be in a place where they have to use a wheelchair just to get around in their everyday life or need someone to wipe their butt when they go to the bathroom. That can be really embarrassing. Even needing help to take a shower is a humbling experience. Those are not things people like to talk about.

They don’t talk about the bladder problems that happen with MS either. Some people need a urinary catheter because their bladder has stops functioning as it should. They wear a urinary bag or pouching system every day just to empty the urine their body creates.

People don’t talk about the fact that your breathing scares you. Sometimes the muscles across your ribs tighten up keeping you from being about to get a deep enough breath leaving you gasping for air.

It’s not said enough that sometimes when you are eating, things can go down the wrong way because your throat doesn’t want to open up properly. Or the fact that you can no longer drive without causing an accident due to poor depth perception or numb limbs that make using the gas and brake pedals difficult. Or that you can’t remember thing without making a ton of notes but even with notes as reminders, many times you lose the paper you write down it on. Or that just pouring yourself a cup of water can bring you to tears because you can’t hold the cup without trembling and spilling it all over the place.

Those are the things people don’t talk about.

The thing is, I cry, I scream, and I struggle behind closed doors. I’ve been judged, stared at in public and have even lost friendships all because of MS. But regardless of everything I’m facing, no matter what happens to me or how down I may feel, I’m a fighter. Every morning I wake up in this battle. It’s not one I chose but it’s the fight I’m in so when I wake up, I come up swinging with all the strength I have.

Sometimes I’m weak and MS wins but even on my worst days I’m a winner. It’s because I never quit. I have the courage to carry on even when my strength fails me. I may never feel better but the battle isn’t over and neither is my life. I’m simply living it differently than I used to.

Multiple sclerosis is your reality

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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. You are finding yourself overwhelmed and challenged in every area of life, and you feel the weight of simply getting through today to be daunting. Laundry has piled up and errands are on hold as you sit alone feeling like you’re about to break.

You don’t feel very brave right now. Sure, when you go out the door with a smile plastered across your face, you are brave. But that’s a mask you wear out in public to cover the pain. Here you sit, alone, and the mask comes off. Your thoughts are running wild and the tears begin to fall.

Where’s your brave when you feel numb to the core? Where’s your brave when all you see is clouds before you and not one ray of sunlight can be found? Where’s your brave when you run into walls, trip on invisible obstacles, can’t walk across the room, choke on air, your body trembles, and you drop everything you try to hold? Where’s your brave when you feel defeated? Where’s your brave then?

I want you to know that you are brave even when you can’t feel it. There truly is strength in you. A strength so amazing that even you don’t know it’s there. You’ve held on this long…that is brave. I know it’s terrifying. I know it’s not easy. You don’t see it, but I sure do. You are a brave multiple sclerosis survivor 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, pain and uncertainty…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 all you need to do to lighten the load. Let it go and find your brave today, because you are brave! I can see it.

Finding the rainbow in the storm

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I woke up Monday morning to a strange sound coming from my bathroom. I wheeled myself into the bathroom and found water pouring from the bottom of toilet tank. There was at least a half an inch of water on the floor. I shut off the water behind the toilet, opened the tank and found the entire flush valve system needed to be replaced due to a faulty rubber washer. Not something I wanted to tackle.

I went to the local home improvement store and bought a new one then came home and changed out all the needed components. It was then that I discovered I needed a replacement braided supply line for the toilet that connects the water to the toilet. The plastic nut attached to the hose had broken off in the night. That was one of the reasons for the leak. I made a second trip to the store, made it home, fixed the toilet, opened the water line, adjusted the water level in the tank and all is well. No more leaks.

To repair the leak I had to mop up a ton of water from the floor. I got more wet cleaning up the floor than taking a shower. Of course I had to take a shower afterwards anyway but wasn’t planning that kind of adventure.

The unexpected happens though, doesn’t it? Sometimes it can be really sneaky and creep up on us, but it happens. Each day is a journey into the unknown. One day you may wake up and discover the sun shining and the next day find yourself in the middle of a storm that is spinning out of control. That’s just how life is. Add multiple sclerosis into the mix and it becomes an outright adventure.

We have gone through our entire existence up until this point in time knowing that each day is unique and filled with change. We try to find ways to predict those changes, but even the weatherman gets it wrong most of the time. Living with MS is no different.

One day you may wake up with a new symptom starting to develop…but you may not. You may notice numbness increasing…but you may not. You may feel more weakness…but you may not. Just as with life, MS changes day to day, and sometimes minute to minute.

When you are newly diagnosed, that can be a scary thing to face. Change isn’t easy. But as time passes you begin to find a routine in a life of change. As strange as that sounds, you do.

This morning, don’t focus on the storm MS has brought your way… look for the rainbow. All storms have them if you know where to look. Put your rain boots on and go splash in the puddles. Find something to smile about. Do something you enjoy. You might get wet in the process, but that’s all just a part of living.

Then dry yourself off and find something to smile about. I’m smiling about having the sense to be able to repair my toilet without calling a plumber to help. No huge bill to pay. Anytime that kind of thing happens it makes me smile.