peanuts

You can’t go through a life with MS alone

In a job interview I was once asked, “If you could be a fruit or a vegetable, what would you be and why?” It was one of those questions used to evaluate a persons personality and quick thinking. I sat there for what seemed like an eternity as I mentally browsed the produce isle of the grocery store, and the thought that tumbled out was, “I would be a peanut.”

I could have picked a watermelon because they make their own fun. You can hold seed spitting contests on a regular basis. Who would’t want to have a life of fun like that? Spitting…on purpose…oh, yeah!

So why a peanut? My answer: because they are never alone. They always have another nut with them in the dark. It’s one thing to have someone with you in the light when times are good, but to have someone sticking around when dark times settle in and the tears begin to fall…now that’s a nut you want to keep by your side.

We all need nuts like that. There won’t be a pile of them, just a few, but those few are all you need. To have one nut, I mean friend, standing with you…well, it just doesn’t get any better. Make sure you let those friends know how much you love and appreciate them. Don’t ever take them for granted because they are a rare breed.

From one nut to another…don’t get down on yourself because of the friends that have turned and walked away, or because you had to turn and walk away from the toxic people in your life.

Having a chronic disease tends to cause changes in relationships. I lost a ton of friends. It’s amazing to me how many fake friends there really were in my life. The real ones stayed though, and that’s all that matters.

Be thankful for the few real friends you do have, and if you have none, get out and make at least one. You have to be a friend to make a friend. It takes purpose and it takes work.

Treasure your friends and be sure to keep them close. You can’t go through a life with MS alone. Life itself is hard enough. When you add MS into the mix it gets even harder, that’s why it’s important to make your relationships a priority. You are worth it…you nut!

MS Gets on My NervesMS WarriorMS Superhero

 

Living with multiple sclerosis…shift happens

Multiple Sclerosis has taught me a lot about myself. It has taught me how to adapt to change and shift, many times on a daily basis, to the unexpected. No one likes to have their life disrupted by the unexpected. It makes our daily life hard to manage and plan out, but with MS you learn that it’s okay to change plans; that it’s okay to call up a friend to let them know you have to cancel today because your legs aren’t working or the fatigue has gotten too intense to handle; that it’s okay to acknowledge the struggle.

If you don’t learn to go with the flow, the flow will swallow you up in the process. I have had to learn to be okay with not being able to do it all myself. Ms. Independent and Ms. I-Can-Do-It-Myself have become Ms. I-Need-Help and Ms. Wobbly.

Did I like the lesson? Absolutely not! Was it easy to swallow my pride and allow others in so they could help? Absolutely not! But it was a lesson well learned and one that I’m still learning to this day.

I can remember the first time I started using a cane to help me walk. I was at the neurologist’s office for an appointment knowing full well I was struggling with my balance—holding onto walls just to make it down the hallway without falling down—when the news became a reality. She said, “You need to get a cane.”

My first thought was, “No way, I will not give in to MS, and besides, that would be so embarrassing. I don’t want to draw attention to myself.”

Then, as if she could read my thoughts, she said, “It will be much easier for you to use a cane than to have to deal with a broken bone due to a fall.”

I thought to myself…broken bone or broken pride…hmm! I chose to break the pride. That day I bought a cane. Over the months ahead I learned to adapt to its use. Some of those changes were easy, some were hard, but all in all they were great lessons to learn. I finally conquered my pride…or so I thought.

A year after I started using a cane regularly, I was back in the neurologist’s office due to more falls and instability. I remember that day just as vividly. She said to me, “You really need to consider using a walker. It will help you by giving the added support you need.”

I was devastated hearing that. I knew she was right, but in my mind all I could think about was how I was letting MS win. Yet again, the neurologist was right and I learned an even bigger lesson. I learned that I still had pride in me that I was holding onto.

I wrestled with the same thing transitioning to a wheelchair. It seems like each new life-changing moment has hit me pretty hard, yet with each bruise, with each fall, with each shift, I have learned something new about myself and about life. Lessons that someone can only learn by going through the struggle.

I could fumble and stumble my way through life denying the battle I’m in or simply adapt with the changes when they come. It doesn’t mean I’m giving in or that MS is winning, it simply means I’m strong enough to know when I need help and that I’m not too prideful to receive it. That makes me the real winner.

The journey ahead will have its rough places. There will be cracks in the road, speed bumps, dips, terrible sinkholes, and mud puddles but I can tell you from experience that no matter what comes your way, you will be able to handle it. You are strong enough and brave enough.

The biggest lesson I have learned through it all—the biggest thing multiple sclerosis has taught me—is that shift happens.

MS Gets on My NervesMS WarriorMS Superhero

 

brain

My wonky, mixed-up, multiple sclerosis brain

Brain Fog: That moment when you confuse people, places and things with apples, oranges and grapes. It could be something as simple as starting the coffee pot without the coffee in it or as crazy as forgetting what you are saying while you are saying it, not remembering why you went into a room with apparent purpose and gusto, or forgetting to rinse the shampoo out of your hair. Yes, I have done all of those things.

Once I had a huge brain fog moment. I fell asleep around 4:30 PM after I climbed into bed for a late nap and was awakened an hour and a half later at 6:00 PM because of a loud booming noise out my window. When I turned and looked at the clock, I didn’t see the “PM” part and thought it was morning and that I had slept through the night because I had been so tired.

I got up, took my morning meds (afterwards, I checked to make sure nothing bad would have happened because of doing that), got dressed, then drove myself to an appointment.

I remembered thinking how odd it was that morning rush hour traffic seemed super light but had not yet connected that to my time mixup. When I pulled into the parking lot for my appointment it was basically empty at that hour. I just shrugged it off as my imagination, got out of the van, went to the front door and of course it was locked.

It was then that I pulled out my phone thinking by chance I looked at the clock wrong, and sure enough I did. My appointment wasn’t until morning. I laughed so hard once I realized what had happened, texted a friend about my huge blunder and drove home with a smile on my face.

That was a first for me, to confuse time so badly without realizing something was wrong with my discernment. I’m sure you have some doozies as well. MS is sneaky and plays with our brains, muddling up thoughts, words and life itself.

Choose to laugh in those moments in order to ease the discomfort of doing something that others find silly, out of place, or wrong. It’s a whole lot better than crying.

I hope I made you smile today. I give all the credit to my wonky, mixed-up multiple sclerosis brain.

MS Gets on My NervesMS WarriorMS Superhero

 

You didn’t cause Multiple Sclerosis

It can be hard living with a chronic illness that people can’t see and choose to not understand. Just trying to explain why you aren’t a quadriplegic or a paraplegic even though you have lost much of the feeling in your feet, legs, hands or arms is difficult. It seems in their minds that if you have no feeling in them, then you shouldn’t be able to use them.

I love people’s curiosity about multiple sclerosis, especially the young people. Those who ask questions and really want to understand what MS is all about. I admire their questions and welcome them because it gives me a chance to educate people about how my insides really feel and the struggle I face every day.

The people that I have the hardest time with are those who choose to not understand and not care. They could be family members, co-workers, bosses, friends, or even strangers. Their lack of trying to understand is their choice and speaks volumes about who they are as a person. It’s a heart issue on their part…it has nothing to do with you.

When someone attacks your inability to do something or your pain and struggle with statements like “suck it up, it can’t be that bad”…it’s those people who need a moment living with MS to understand that it actually can. If I could give away my MS for just a moment in time, I would give it to those people so they could get a reality check.

What I have learned over the years is that you will always meet people with a lack of compassion or understanding. Don’t let their ignorance get you down. It is showing their weakness, not yours. In a way, they are the real disabled people, not you.

Do your best to walk away (or wheel away if in a chair) and shrug off their insensitivity. Yes, it can break your heart. I know the feeling of not being understood, but you can’t let their insensitivity get in your head and make you think you are “less than” or unimportant and useless.

You didn’t cause your body to turn on itself and begin attacking your own Central Nervous System. You didn’t eat or drink the wrong things, live a bad life or not take the right kinds of supplements. Just like you can’t think yourself out of it, will you body to be whole or think positive enough to make it go away. MS just is.

I know I say it often, but keep your head up. You are going to make it through today. Don’t listen to other people’s opinions about what you should do or how you should live affect you. You are amazing and a treasure just as you are. Take a deep breath, shake off their opinions or lack of understanding and keep moving forward.

MS Gets on My NervesMS WarriorMS Superhero

 

rainbow

Broken by multiple sclerosis but still standing

I know how difficult things can get. It’s not easy making it through the day when my body is fighting against me. I didn’t ask to be the strong one. At times when people tell me to stay strong, I actually feel so weak that I have no idea how those words are supposed to be comforting. To me, they feel more like a punch in the gut than the gentle hug they were meant to be.

Stay strong? I don’t like to admit that there are times when being strong is simply not possible. Oh, I try. Boy, do I try. But when I wake up in pain, exhausted, weary, and unable to feel parts of my body because the numbness keeps creeping up my legs, arms and even my face…the struggle crumbles me. Stay strong? I feel more like a crumpled piece of paper than a rod of steel.

How am I supposed to stay strong when I am broken? People who say they never break are either lying to you or to themselves. I have been broken many times and feel more like a pieced together puzzle that’s been glued together over and over again than a strong oak simply bending in the wind.

It’s a great thing to think about, being a tree swaying in the wind, but anyone that has ever lived through a tsunami, hurricane or tornado knows that even the strongest of oak trees break. It may still be standing when the storm subsides, but scars are left behind as a reminder of what once was as branches and sometimes even the trunk itself breaks.

The truth is, multiple sclerosis changes you. Multiple sclerosis actually means multiple scars. It leaves scars both in your brain and spine, and although the physician that named it didn’t mean it this way, but MS also leaves scars in your heart. You change.

The storm you are enduring…people can’t see it. Some try to understand, but without living in your body and experiencing your journey by walking in your shoes, they just can’t understand the mental and emotional pains you face each day along with the slew of symptoms you have to endure. They don’t know how often you cover your tears with a smile and piece together your heart with bubble gum and shoestrings.

Are you stronger because of MS? Absolutely you are. You are stronger even in the breaking. You have endured much and just like how a tree grows new limbs once a storm has torn it apart, you are growing and changing every day. You may be at a place where you feel like the storm is overtaking you, but the winds will calm down and the sun will come out. It may not seem like it, but it will happen.

Hold on with everything you’ve got, then when you find your strength again…stand proud of what you’ve come through and all that you’ve overcome. You may look tattered and worn, but you are still standing even if you can’t physically stand…you are standing tall on the inside. That speaks volumes about who you are. That’s how warriors are made and whether you feel like it or not, you are a warrior. A mighty MS Warrior.

Not many people can make it through a storm, break, then keep standing…but you are doing it. So the next time someone tells you to stay strong, smile in your brokenness realizing that your scars speak of your strength and tell a story that only a warrior knows and only a warrior can tell.

MS Gets on My NervesMS WarriorMS Superhero

 

Multiple Sclerosis depression is a real thing

MS Depression is real. It’s not the same as being sad or feeling blue either. Everybody experiences moments of sadness and have times when the tears flow easily because of an unexpected life change, but with sadness the sun comes out, the tears dry up and life goes on.

Depression is more intense than just being sad. It’s felt deep, it hits hard and it lingers for days, months and sometimes even years without a true grasp as to why. It’s not a part of your imagination or something that you’ve made up.

Life changes living with a chronic illnesses. It changes daily and that can be a hard thing to deal with…living a life filled with uncertainty and constant change. One day you may wake up feeling great and the next day you find you can’t even get out of bed. That kind of turbulence has a tendency to wear on emotions and brings with it a feeling of hopelessness and despair.

I understand how easy it is to grow weary and tired, to go through periods when you would rather hide away than face another day, to become overwhelmed and long for just the tiniest amount of relief.

Our lives are filled with people but sometimes it simply takes too much energy to be around them. Sometimes it’s not even being around them that’s the hard part, sometimes it’s just that putting on a real smile takes too much energy. No one likes to fake-smile their way through a day, but sometimes we do it because we have no other option.

Know that you aren’t alone. I think everyone hits a place in their MS journey when depression becomes real, tears flow, reality sets in, and choices have to be made. Hard choices. How do you bounce back from a deep, dark place of despair? How do you shake feelings that are so overwhelming that you find yourself drowning? How do you learn to live again when you feel as if there’s nothing left to live for?

Please know that it’s okay to ask for help. There’s nothing wrong in reaching out to your doctor or others for support and there’s nothing wrong in choosing to take a medication to help you get through the turmoil you find yourself in. I know how hard it can be, but don’t try to make it alone. We need one another and we need to be able to talk about what’s happening deep inside without fear of being judged or not taken seriously.

I know it’s not easy, but you can rise above the chaos. You can pull out of the messiness that life throws at you and rise above it all to a better place; a place filled with hope, smiles, laughter and joy. It starts with you taking care of you first.

When you feel like you are sinking deeper and deeper into nothingness, you have to put everything else aside to focus on yourself. Yes, you are that valuable. You are that important. You are that special. You matter!

Never apologize for who you are. You are going to make it through even this. It’s okay to be real, to hurt, to be human. Let the tears flow but if you find yourself hanging out in the puddles for too long, please, please, please reach out for help. There really is hope for a better tomorrow.

If you know someone who’s depressed, please resolve never to ask them why. Depression isn’t a straightforward response to a bad situation; depression just is, like the weather.

Try to understand the blackness, lethargy, hopelessness, and loneliness they’re going through. Be there for them when they come through the other side. It’s hard to be a friend to someone who’s depressed, but it is one of the kindest, noblest, and best things you will ever do. ― Stephen Fry

MS Gets on My NervesMS WarriorMS Superhero

 

What does it mean to be a positive person?

What does it mean to be a positive person

There are people that misunderstand what it means to be a positive person. Some seem to think it means that you say nothing negative, think nothing negative and basically live in denial of all difficult circumstances in life. They believe that as long as you don’t acknowledge that there’s a problem, then the problem doesn’t really exist, or at least it doesn’t have control over you.

I had a friend who wouldn’t open her electric bill when it came in the mail because she feared the amount it would be if opened. To her, as long as she didn’t see it, it didn’t exist. But if she ignored it long enough, her power would be turned off. No amount of denial would change that fact. She had a bill that needed to be paid and it wasn’t going away unless she faced it and worked out a plan to pay it.

Being a positive person does not mean that you ignore what’s going on. You can’t go through life with your head stuck in the sand refusing to acknowledge the reality of what you are facing. Positive people cry. They get frustrated, angry, and at times want to give up. They have fears, worry, doubt and have moments of deep despair. They have negative thoughts and emotions…

BUT…

They don’t allow those things to hang around for long. It’s not easy to do either. Facing difficult situations can be scary and stressful, but anyone can learn to look for the positive side to a negative day.

Can you see the good in a rainy day? The rain makes it harder to drive through traffic or to keep your shoes clean, but it brings some much needed water to the earth and creates amazing puddles for you to wade through. Are you more prone to see the mud on your shoes or the rainbow that just formed in the sky? It’s all a matter of perspective. Good and bad both exist in every situation. You have a choice of what you will focus on.

Each person diagnosed with MS is affected by it. We are all human and we all hurt. Anyone that says they never have a negative thought or feeling regarding MS is not being truthful. We all have them. It’s what we do with those thoughts and feelings that matters.

If you need to have a melt down, cry, vent, or even scream…it’s okay. We need to take time to process all that is happening. The continual changes that are happening can get overwhelming.

The fact is, MS is real and it’s not going away tomorrow apart from a miracle. That is the bad. But as you wait for your miracle you can choose to see the good all around you.

Laugh, love, cry, hurt, smile, but choose to live your life each day from a place of positivity. Find the smile in your day, the rainbow in the sky, the good in the bad. Don’t deny that MS exists in your life, just deny its power over you being able to live it.

Now that’s being a positive person.

MS Gets on My NervesMS WarriorMS Superhero

 

Tomorrow…life will change

No one likes to think about where Multiple Sclerosis may lead…not even me, but I can tell you from my own experience, to ignore all possibilities of progression is to live in denial. I lived there my first year after diagnosis. I refused to believe that my life was changing or would keep changing and that I needed to make adjustments.

I know how hard it is to accept that your body is fighting against you. I know how much you want to simply fight back and hope with all hope that you are one of the lucky ones that lives with a benign case of MS, and I commend that attitude. I really do. But denying that MS is a part of your life will only hurt you later on. Refusing to accept what is happening to you is setting yourself up for defeat.

The best way to look at things is from a perspective of…”Yes, I may have MS BUT as long as my body is still able to function, I will live each day to its fullest. Tomorrow that may change and if that should happen, I’m prepared for it. Maybe not mentally. Maybe not emotionally, but I have considered my surroundings and I have made preparations for the possibility of a life with limitations due to MS.”

You see, preparing for tomorrow is not living with a negative attitude. It’s living in reality. Somehow, somewhere along the way we have changed the meaning of positive and negative thinking.

It’s not negative to prepare for tomorrow. It’s not negative to talk about MS, your struggles or your pain. It’s not negative to think of ways to adapt your home or even start the process in making those changes now before they are needed. It’s not negative to adapt your home or your life for a possibility of immobility.

Some of us don’t have the luxury to make those preparations because life hit us too hard, too fast. If you can…begin making the preparations now. You will be glad you did. Besides, what could it hurt?

Enjoy today, live in the now, savor the sweet memories you are creating with those you love, but don’t ignore the possibilities of tomorrow…good or bad. Change happens whether we like it or not.

MS Gets on My NervesMS WarriorMS Superhero

 

I have fallen and I can’t get up

I had this bright idea to scrub the floor yesterday and since I’m a bit OCD, I chose to get down on the floor and lug my body along with a bucket of vinegar water across the room to ensure that every nook and cranny was cleaned.

I didn’t crawl around on my hands and knees as I would have done years ago. For me that’s an impossibility. I am unable to kneel due to numb and weak body parts. I just pull myself around backwards on my butt. I’m sure I am not the only person who does that. Surprisingly I am pretty good at it too. I’m actually better at that than I am at walking.

When I finished, it came time to get up from the floor. Now that’s a big deal. I am definitely more qualified at get down on the floor than I am at get up. The thing is, even though I know this fact about how my body functions, I still disregard it and find myself in these crazy predicaments without a planned solution to help me out.

It took me over 30 minutes to make my way off the floor. I tried all my normal tricks to no avail. I’m sure if there was a camera focused on me at the time, I would have resembled a beached whale in need of life support. I simply had no strength to pull myself up.

As I sat on the floor in tears and feeling defeated, I came close to calling a friend and asking them to leave work to help me off the floor, but my stubborn determination won out.

I remembered a video I had watched a few years back on how to get up from the floor MacGyver style! I used the “book method” since I had a nearby bookcase loaded with books. You have to watch the video to know what I mean, but I slipped books under my butt to slowly raise myself up to a height where I could pull myself onto my chair.

It took a bit of work, but I made it. I did nothing the rest of the day, but felt proud of myself for the accomplishment. It’s funny to me the things that make me feel proud lately. Getting up from the floor may seem trivial to a majority of people, but for me it was monumental.

Don’t avoid asking for help. If someone had been home with me, I would have surely had them help me get up, but sometimes you are the only one around and you have no other choice. You have to push through and figure out a way to make things work.

Never let a moment of defeat cause you to give up. We may have to do things differently than a majority of the population, but with a bit of creativity, ingenuity and determination anything is possible.

Now today is nail clipping day. That’s another task that takes some ingenuity and creativity for me to complete. I wonder if there is a MacGyver option for that too.

MS Gets on My NervesMS WarriorMS Superhero

 

What A Multiple Sclerosis warrior looks like

Multiple Sclerosis is weird. You can wake up one morning feeling okay and the next wishing you didn’t wake up at all. It messes with your body, your emotions, your relationships, and your job. It has this way of touching every part your life.

MS is definitely not a disease you can keep to yourself. We try though…don’t we? I know I do. I try hard to keep it neatly contained in its own little space but it doesn’t seem to stay where I want it to.

If only people could see inside my life for a day and experience not just the physical symptoms of MS, but the emotional, relational, and financial challenges it brings along with it. Oh, my…they’d be running for the hills to hide away.

MS is something I wouldn’t wish on my worst enemy, but it is something I wish everyone could experience for a day so they would have a bit more understanding, compassion and patience with me. This way, when I’m having a bad day, I don’t have to work so hard trying to explain myself and having to convince people that my pain and struggles are real.

Today I woke up and my hands wouldn’t cooperate. The tremors were a bit more intense than I have experienced in times past. As a matter of fact, my entire body feels like an earthquake has exploded in 10 different directions. Nothing is working as it should. But I peck out my thoughts and send my heartfelt message of encouragement to you because I don’t want anyone to feel defeated, alone or hopeless. I don’t want anyone to give up.

If I can do it, you can do it. We got this.

We didn’t ask for this fight. I don’t know anyone who picked MS out of a lineup and said “I want that disease for the remainder of my life.” We didn’t cause it nor can we end it. The only thing we have left to do is to fight or give up, and giving up is not an option.

You see, MS warriors are made in the struggle. You are my hero because you fight battles every day that no one will ever see or know about. You wield your sword and fight gallantly even when your knees buckle under you and it’s hard to hold your head up. Never doubt, not for a moment, your strength because even on your weakest days you are strong.

Fight on, oh mighty warrior. Fight on!

MS Gets on My NervesMS WarriorMS Superhero