A life with multiple sclerosis isn’t as easy as some people think

One of the hardest things about living with multiple sclerosis is the pressure from some people to just get better. It’s almost as if they think I have this secret power tucked away in my sock drawer that will rid my body of all the symptoms, difficulties and struggles MS is causing in my life, but for some unknown reason I choose not to use it.

When I am unable to join in on the outings, parties, dinners and trips people are taking part in, the vibe I get at times from them is one of doubt that things could actually be “that bad.” I can almost see the thought bubble above their heads as they wonder how it is I can go from feeling okay one minute to feeling like crap the next.

The best thing anyone could ever do for someone living with MS is to allow them to decide how they’re actually feeling and what they are capable of doing. I like it when people leave those choices up to me and are okay with what I choose. After all, it’s my body, it’s my life. I should know how I’m feeling.

Sometimes I do need that tough love push…but most of the time I don’t. I push myself harder than anyone else could anyway. Most of the time I need someone to tell me it’s okay to stop pushing so hard, to give myself a break and simply be.

Those that love me enough to give me the option to choose and are okay if my decision is different than what they want or planned for…those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel.

Living with MS can be extremely lonely and amazingly enough it’s possible to feel that way sitting in a room all by yourself as well as in a room full of people. Sometimes you just want someone to sit by your side and simply be there, to give you a hug, to listen, to care. No agenda…just be there.

When you find yourself sitting in a puddle of your thoughts wondering where everyone has gone, know that there are others with MS who understand. We may be separated by miles and miles of distance and separated by oceans and seas, but we are connected through wires and keystrokes. We are in this together. Sending you a virtual hug…from me to you today.

MS Gets on My NervesMS WarriorMS Superhero

 

Multiple Sclerosis actually means Multiple Scars

If you could see my insides, you would see scar after scar after scar. I guess it makes sense that Multiple Sclerosis actually means Multiple Scars. You see, the nerves in my brain and spine have been chewed to bits…literally.

I tell people that the nerves in the body are much like the wiring in a house. Mine have been damaged to the point they are short-circuiting and signals are getting crossed. This causes terrible chaos in my life. I guess you could say I’m a real live wire.

I have some nerves with such extensive damage that repair cannot be made. In their place now exists a black hole. A scar so deep that nothing could ever live there again. If you took the time to learn of my scars, you would hear about what life is like for me. You would hear of the pain I endure, the way my brain confuses thoughts and words, how my tired is different than other people’s tired, and how parts of my body have gone numb and lost their ability to function.

But do you know what else you would hear? You would hear about how strong I am and how at the end of the day I’m still going. I won’t quit even though I’m covered in battle scars. Those scars are a part of my life now.

I may not be able to do the things I used to do because my wiring is a jumbled mess, but just because people can’t see what’s happening inside my body doesn’t mean the damage isn’t there. I wake up each day to a fight…a war. Not one that I chose, but one I must endure. At times I am battle weary, but I will never be a quitter and I will never lay down my sword. I’m a warrior that way.

My scars are laid out like a constellation visible only by an MRI. They shine bright even though they are hidden in the dark. When I pause to look at the stars in the nighttime sky, I see amazing beauty as I watch the lights twinkle and glow but did you know that stars are just broken pieces of matter? They are the scars of the universe and yet even though they are caused by tragedy, they give hope to millions.

Today your sword may be heavy and your body tired…but you are still going. Everything you accomplish is a victory no matter how small. Each muscle you move is a triumph. Regardless of what the day holds, you will not be defeated. You are a winner covered in scars bringing hope to others without your even knowing it. People watch how you live your life and are in awe of your tenacity and courage.

If I can endure, if I can keep going, if I can hold on…then I know you can too. Together we create an amazing display of sparkles in the universe. Together we shine bright. We will not be defeated or give up.

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

 

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 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

 

When Multiple Sclerosis messes with your taste buds

Just when I think multiple sclerosis can’t get any weirder, I’m proven wrong. The past few days my ability to taste has diminished considerably. My morning coffee has become more of a habit drink than a savory experience. It tastes like warm something…I just don’t know what that something is.

I made some lemon chicken yesterday for dinner but couldn’t enjoy it. It had a wonderful aroma, looked amazing, but the taste just wasn’t there. In the end I didn’t eat much of it. That’s concerning because ensuring proper nutrition is very important to anyone dealing with MS, or any other chronic illness, and I’m having to get a bit creative to ensure I do.

I have some meal replacement drinks that are chock-full of minerals and vitamins, and I find they are currently easier to manage than an entire meal that I can’t enjoy. I will have to keep a bit more track of the foods I eat, or don’t eat, so I don’t end up losing weight unnecessarily…although who wouldn’t want help losing a few extra pounds? 

Today I am going to make some tomato soup for lunch and maybe try a salad but that may be pushing it. We’ll see.

I’m ready for my taste buds to return to normal, I just wish my life would as well. That may be too much wishing for one day. I pray, work hard to stay healthy and keep a daily schedule of exercise, muscle massage and brain therapy.  If I see a shooting star tonight I will definitely give it a wish. Hey, anything is worth a try. 

Don’t let Multiple Sclerosis make you feel as miserable mentally as your body actually feels

There have beens days when I have looked over the entirety of my life and wished things were different. I have even envied people who are not disabled. What? I shouldn’t think like that?

Sure that’s easy to say, but thoughts happen, and in my head they seem to happen more often than I care to admit. I don’t think you would want to live a day in my head. It’s kind of scary in there. I can think of some pretty crazy ideas and have some equally wild pity-party moments.

I’m not going to lie and say that I’ve never wanted things to be different, because I have. Those thoughts seem to appear when the struggle is at its worst…when my muscles stop working, my brain takes a vacation and pain intensifies.

I could let my disability ruin my day and cause me to become as miserable mentally as my body actually feels, or I could let it help me learn to appreciate the little things in life that we tend to take for granted. Things like the fact that my roof isn’t leaking, my shower works, someone somewhere loves me, and multiple sclerosis may be a part of my life but it’s not who I am.

One thing living with a disability has taught me is that there is so much to be thankful for. I think of the people who won’t have the opportunity to get through today and that’s enough to make me appreciate everything I have, whether it’s pain, the inability to do something or the complications MS throws my way.

I can overcome anything if I take my day and break it up into tiny bite-sized chunks. A friend once told me that it’s easy to eat an elephant. Not a real elephant, mind you. I wouldn’t even want to do that. But a giant obstacle you are facing. She said you do it one bite at a time. So that’s how I break my day up…one bite at a time. I may find things hard to swallow at times, but when I keep at it, I find that I’m able to get through anything that comes my way. That impossible elephant suddenly becomes possible.

I may end up weary, bruised and tattered when the day comes to a close, but regardless of the struggle I will hold my head high and keep pushing on. Other people…I doubt they would be able to get through an hour in my MS body, let alone a day.

Take time to enjoy the little things in life that bring you joy. Allow yourself time to smile. Appreciate the roses and the sunsets along with the splinters and stormy skies. Hold on to the good in life and don’t let it go.

Lately I’ve become more home bound than any other time in my multiple sclerosis journey

Lately I’ve become more home bound than any other time in my multiple sclerosis journey. Sometimes I welcome the solitude and enjoy my alone time, but more and more it seems to come accompanied with depression, feelings of worthlessness, and tears.

Last week I was invited to a dinner scheduled for last night. It was something I had been looking forward to getting out of the house to be a part of. I had even laid out the clothes I was going to wear, but at the last minute I had to cancel because MS just wasn’t cooperating. Between vertigo, blurred vision, tremors and weakness, I just wouldn’t have made a very good dinner guest.

I crawled into bed after letting the person know that I couldn’t come and broke down into tears. The sobbing, snorting kind of tears. I felt so alone, so useless. No one tells you when you get diagnosed with MS that life has the possibility of changing like that. But you know, I have a feeling that even if they had told me, I probably wouldn’t have believed them anyway. I always thought I was going to be the one to beat the odds.

So what do you do when life catches up with you? What do you do when MS limits you? What do you do when tears are easier to come by than smiles?

The emotional pain that accompanies these kinds of times are hardly ever understood by others, but it’s important to not let them weigh you down. Talk to those in your life who are part of your support system whether it be a family member, doctor, friend or therapist. You can’t keep everything bottled up. It really is okay to talk about what’s going on. You’re not being selfish, a burden or attention seeking when you do.

Today, I’m up early, my emotions are much calmer and I’m ready to face the challenges before me. Sure my hand is still a bit shaky and I had a hard time transferring from my bed to my chair, but it’s a new day filled with countless possibilities. I’m dressed, the weather is starting to cool down a bit which is always welcomed, and I already found something to smile about as I watch some wild turkeys in my back yard playing tag.

Don’t lose hope! Sometimes that is the only thing holding me together.