Dear Multiple Sclerosis, you’ve messed with the wrong person

Dear Multiple Sclerosis,
I want you to know that you are not the boss of me. Sure, you have made my life a living hell. You may have caused me countless tears. You may be the reason I had to quit my job, have lost seemingly great friendships, and am facing unprecedented financial difficulties. You may make my body weak, my thoughts a jumbled mess, my body tremble and my vision blurry, but you will never, and I mean NEVER, have the satisfaction of stealing my hope.

Hope is what keeps me going when I feel overwhelmingly discouraged and depressed. It gives me the strength I need when I’m feeling completely worn out from fighting every day. It helps me keep my head held high and my heart strong when, in reality, I feel as if I have lost every bit of passion and courage I thought I had left.

You see, I have hope in a better tomorrow.
I have hope that one day a cure will be found.
I have hope that my life matters to the people I come in contact with, both online and in person.
I have hope that, regardless of the struggle, I will find a smile to brighten my day.
I have hope that there are still good, caring, honest, loving people in this world who are willing to stand up for the disabled to help us fight.
I have hope in the 2.5 million people in the world living with Multiple Sclerosis, that each one of us finds the strength we need to keep pushing on.

MS, I know your plan is destruction, but no matter how hard you try, I will not be defeated. I am a warrior…and that’s what warriors do…we rise up!

We may make it through our day exhausted, weary, and feeling like a complete and total wreck, but we will not give up. You’ve messed with the wrong group of people. We are fighters, we are strong, we are mighty, and we NEVER give up…hear us ROAR!

flight attendant

All aboard the Multiple Sclerosis Express

Ladies and gentlemen, this is the non-stop flight to a life with Multiple Sclerosis. On behalf of the Captain and the entire crew, welcome aboard.

In preparation for takeoff, please ensure all negative attitudes are properly stowed in an overhead bin. Please take your seat and fasten your seat belt.

At this time, we request that all stress, fear and worry be turned off for the duration of the flight, as these items might interfere with the central nervous system and communication processes of this aircraft. We request that all canes, braces, walkers and wheelchairs be secured until we have reached a stable altitude free from turbulence, wobbles and unsteady movements. We will notify you when it is safe to use such devices.

We remind you that this is a non-sleeping flight. Sleeping is prohibited, but we do have endless TV shows, movies and documentaries available for your viewing pleasure.

There are several emergency bathrooms on this aircraft. Please take a few moments now to locate your nearest bathroom. In some cases, your nearest bathroom might not be close enough. If you need to go immediately, I suggest you move quickly to ensure no accidents happen.

Blood tests and lesions are always being monitored. In the event of a relapse, an MRI machine will automatically appear in front of you. To start the scans, your head will be secured to a table and you will be inserted into a tight, claustrophobic tube. Although the machine is loud, you will be allowed music of your choosing to help drown out the sounds. Keep perfectly still without sneezing, scratching your nose or coughing until a uniformed attendant advises you it is all over.

In the event of an emergency, IV steroids are available and will be administered as needed.

We will hit turbulence along the way, but rest assured it won’t last. We will eventually pull above the storms and enter sunny skies. I expect good attitudes for our trip.

If you have any questions about our flight today, please don’t hesitate to ask one of our specialists. Thank you.

I wish Multiple Sclerosis was no more

One day Multiple Sclerosis will be no more. It will not be able to cause pain, fatigue, weakness, and those crazy frozen brain moments. It will no longer have the opportunity to harass or hurt another person in the world. Its attempts to cause any kind of harm will be foiled.

I wish that day was today, but when I woke up this morning MS was still here. It appears my dream hasn’t come true as of yet, but that doesn’t mean there’s no hope for tomorrow. Whether you believe me or not, anything is possible tomorrow and I will never stop believing for great things to happen…for you or for me.

Today as I wait, I choose to live life in the moment. I discovered when I live that way, I am able to put my fears and worries to the side because I find more joy focusing on the things that truly matter. You know, things like family, friends, chocolate, and coffee. Yes, lots and lots of coffee.

My greatest dream is for years from now, people will look at the road I took in life and wonder what it was that made me so strong. I want them to see something in me that leaves them in awe and scratching their heads in wonderment.

And when they ask what it was that gave me such strength, the resounding answer will be “She had Multiple Sclerosis and never gave it rights to her heart. She lived and loved life in spite of the struggle.” And I want them to be able to carry that same strength with them everywhere they go.

I want that for you too. Today, you have the strength to face this very moment in your life no matter if you are in the hospital hooked up to noisy monitors, busy nurses and meds galore or if you are stuck in traffic with a twitch in your leg that makes you drive more like a drunk driver than a respectable citizen.

You are amazing. Never believe anything different. All those negative focused thoughts that have a tendency to make their way into your head…they are lies. All lies. You are strong enough for this part of the journey. So much stronger than you give yourself credit for.

Enjoy the little moments that make up today. Find something that gives you joy and do it. Find the rainbow in the storm. Today is your day, now LIVE!!!

Multiple Sclerosis…it’s just all in your head

Some mornings I wake up and simply don’t have the strength to get out of bed. I truly wish everything we go through each day was all just in our heads like some people believe. Those are people without MS who don’t understand the kinds of limitations we live with.

I guess you could really say it’s all in our heads though since our brains are filled with lesions; or how I like to say to people…it’s full of scars.  That’s what Multiple Sclerosis actually means anyway—multiple scars. Only for me I have a spine full of them too. Those scars are what’s causing all our problems and messing up our ability to walk, talk, think and feel.

Right now as I’m writing this, I’m in the bed struggling to type on my laptop due to blurred vision, a weak and trembling right hand, pain in my feet and an uncomfortable catheter tube coming out of my belly. All in my head? I wish it was all in my head.

When people say that to me—and yes, it has happened before—I want to smack them in the head. You know, I could actually do that and blame it on MS calling it an MS spastic twitch. All in my head? Really?

To those experts I say…I wish you could live in my body for a day. You would quickly give up your degree in neurology. Oh, wait, you didn’t go to medical school. You got all your schooling from Aunt Sally Sue down the street and Google University. In that case, you need to fire Aunt Sally Sue and even more importantly learn that 9 times out of 10, Dr. Google is WRONG. Yes, I said that.

But really, the internet isn’t what’s wrong. It’s people. We live in this weird period in time where people try to solve all of the world’s problems with bite-sized theories, opinions, one-liners and memes. Gone are the days of real knowledge. Opinions have become truth and everyone is an expert.

I know most people’s parents probably told them that they could do anything, but they didn’t mean in 10 minutes by reading something on the internet. Knowledge can be powerful, but you can’t misinterpret a tiny glimpse of information about Multiple Sclerosis and then declare to the world that you know all about it.

The next time someone says to me that MS is all in my head, I’m going to smile and say, “When did you get your degree from Google University? That’s a BS degree, right? Congratulations!”

The day my world fell apart

One of the most difficult days in my life was the day I handed my boss 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 everything I knew.

I loved my work but as each day 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 the 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.

Cry if you need to, even scream if that helps you release the pain, but 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.

Watching my life change isn’t easy

I remember getting my first pair of glasses when I was 12 years old. I left the store the day I picked them up and was shocked at how clear I could see everything. I was able to see every leaf on the trees outside. They were green blurs before, but with glasses I was able to see every vein and ridge. It was amazing to me how beautiful the world was when everything was in focus.

About 10 years ago I had surgery to correct my vision so I wouldn’t have to wear glasses any longer. That was another wonderful moment because I no longer had to deal with fogged up glasses on humid days or raindrops on rainy days. Everything was beautiful once again but without the need of a pair of glasses to help me out.

But now, because of multiple sclerosis, my vision is messed up yet again only this time there’s nothing I can do to correct it. I get these crazy moments when my eyes just don’t have it in them to focus. They will jump around, wobble about, see double of everything, and become weak and blurred. I also have lost color clarity in my right eye so everything is gray scale. It’s actually quite weird and hard to explain to someone who has never experienced it before.

Sometimes just trying to read an email or a text message becomes an impossible task to complete. When that happens, I’m thankful that technology exists today to read them out loud for me. You never realize how important your eyesight is until you lose it.

That’s one of the hardest things about living with a progressive form of MS. I see my body slowly deteriorating and there’s nothing I can do about it. I can’t actually see the changes from day to day, but when I compare how I was doing a year ago to how things are today, I find noticeable differences…and if I think about it too much, depression sets in and the tears flow.

What I have to do each day is stay focused on the things I can do instead of what I can no longer do. My can’t do list has grown much longer over the years, but my can do list surprisingly has grown too. I may not be able to walk more than 5 steps unaided, see clearly, breathe without concerns, sleep through the night, or swallow consistently, but I can laugh at my shortcomings, make a mean fruit smoothie, hug walls and floors with style, invent new words that really should to be added to the dictionary, and create more laundry than a five-year-old.

Try your best to not lose focus on today by looking at the past and dwelling on all the things you used to be able to do. Regardless of your progression or where you are at in life today, your disability has not taken away your ability to live. Pause and think on that.

Don’t let your can’t do affect your can do. You can still do a lot of things, you just might be doing them differently than you did in times past. Be grateful for the things you can do. You’ll be amazed at just how long of a list that actually is. I believe in you!

life

To whom it may concern: An open letter about life with Multiple Sclerosis

To whom it may concern:

There is an entire world filled with people who don’t understand Multiple Sclerosis. I know since you don’t live with the disease yourself it is hard to comprehend, but I hope what I have to say will give you insight into what life is like for me…giving you insight and understanding into the life of someone living with MS.

First off, I would like to say that Multiple Sclerosis is real, it hurts, it is full of challenges and struggles, and if you haven’t figured it out yet, it is invisible to a majority of the population since the destruction takes place inside the body. The effects are seen in other ways as I walk, talk and go through my day with disabling symptoms, but if you were able to see inside my body, you wouldn’t judge me so quickly. My insides are a wreck and filled with chaos.

Sure, I wear a smile much 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. You see the mask I wear, but let me pull off the mask for a moment. I get angry, fearful, weepy and scared. Lingering in the back of my mind is the fact that one day my future will be drastically different than it is today. You see, MS is progressive. That means that although today I may be moving around okay, tomorrow I may not. It may take a year or 20 years, but my life is changing every day.

Please know that it hurts when you so casually decide you know what’s best for me. MS has affected every part of my life, but that doesn’t mean it’s made me incapable of making decisions. Don’t exclude me from things just because you think I wouldn’t want to be a part or because you think it would be too hard for me to do. Let me make that decision. It hurts more to be left out than to give a response of “no thank you” to an invitation. I would much rather be given the option. Please don’t stop inviting me or including me even if you get a lot of “No” replies.

Another thing that really hurts is when you tell me you know how I feel. Really? You understand the fatigue that never goes away, the numbness in my body, the pain, the bladder problems, the vision struggles? I have major damage in my brain and spine causing continued chaos throughout my body, and you want to try and compare your flu symptoms to my MS? Please don’t do that. Unless you are living with MS yourself, don’t even try telling me you know how I feel. Support me, help me, console me if that’s needed, but don’t make the assumption that you get it.

Then there’s the problem I have of you always trying to fix me as if I’m broken. I’m not broken. I’m simply living with a chronic progressive incurable disease. That means it’s not going away unless a cure is found…and no, there isn’t a cure yet. All those supposed cures you read about online, they aren’t cures. They are either symptom management techniques, wishful thinking, or money making schemes. Nothing has been found to completely remove MS from someone’s life. Nothing aside from a miracle! So your great Aunt Sue’s cousin’s friend who was cured using a combination of bumble bees, tin foil, baking soda and pine cones…I’m not interested in the recipe. Accept me for who I am. I’m thankful you care, but your remedies cause me more weariness than help.

Something else I’d like to say…for some reason you have this need to ask me if I’m feeling better every time you see me. As I’ve said before, MS is progressive so that question truly has no answer. Feeling better than what or when? Yesterday? Ten minutes ago? Last year? Instead of always asking me if I’m feeling better, treat me like everyone else. There are more things to talk about in life than my having MS. I don’t want that to be the center of conversation every time we meet. I am more than my MS. I am still me and would much rather talk about gardening, traveling, architecture or the funny thing I saw yesterday on the side of the road. Don’t ignore my struggle, but don’t make it a continual focus either.

Please know that I have my bad days and at times terrible, horrible really awful days. Getting out doesn’t make them better either. In actuality, going out has the potential of making them worse. Me doing more will not make my MS symptoms less. Yes, exercise is important, but it has to be done carefully. That old saying “no pain, no gain” will not work for me. If I get to the point of pain, I have pushed too far and my body is going to rebel for days, if not weeks. I have to do everything carefully and with great planning. Sometimes my bad days happen within minutes of a good moment. That’s just how rebellious my body can be. So please don’t tell me I need to get out more or I just need to lose weight to feel better. That’s not the cause of my struggle and it is not the answer to my pain.

So, the next time you decide you want to judge me for my bad days, bad moods or even my bad responses to your insensitivity, keep these things in mind…

I am the same person I was before my MS diagnosis. I am intelligent, caring, full of fun, loving, ready to laugh at any given moment, and a great friend. I also have the potential to be angry, moody, and frustrated. All still part of who I am. I would like nothing more than for MS to be cured, but as of today that reality doesn’t exist. Please don’t look at my disability as if that’s all that I am. I am still me…MS and all. The only difference is that I need a lot more love, support, care and understanding. I would much rather have someone fighting alongside me than against me.

Signed,
An MS Warrior
(Penelope Conway, Positive Living with MS)

P.S. Please share this with your friends, family, co-workers, and neighbors. Multiple Sclerosis awareness is needed all around the world.

Body Tremors: That was a 10 on the richter scale

Have you ever lived through an earthquake? It’s such a strange feeling and can be quite scary. I woke up to one once in the middle of the night. I remember my bed shaking as if someone had grabbed ahold of the headboard and was tossing me about. Thankfully it was a minor quake and no damage occurred, but even something small like that was noticeable, scary and remembered.

This morning my bed was shaking. My first thought, “Oh no, another earthquake.” It took me a minute to focus and then I realized it wasn’t my bed that was shaking, it was me. My body goes through some really crazy tremors. Some last a short time, others can last all day. My legs, hands and head involuntarily twitch and shake.

The tremor in my right hand is the most annoying of them all. It’s not easy trying to put on my socks when my hands keep missing my feet, or trying to type on the computer as I miss every letter I reach for so I end up doing the hunt and peck instead. Even trying to eat with a spoon or fork can be quite entertaining. Food will bounce around, fall to the floor, and the utensil will even miss my mouth entirely. And don’t even get me started on my experiences of trying to drink from a full open cup. Let’s just say I have plenty of coffee stained shirts as evidence of the mishaps that occur.

Sometimes the tremors are internal. What I mean by that is my body feel as if it’s shaking, but you can’t physically see it. It’s as if every nerve in my body is on high alert and quivering. It is exhausting and can be quite uncomfortable. It’s kind of like that feeling you get after holding onto a lawn mower handle for an hour, then you stop mowing the grass but you hands still feel the vibrations. Take that feeling and imagine your entire body feeling like that. It’s an internal buzz that doesn’t stop in 10 minutes. It keeps going, and going, and going. I think it outlasts the Energizer Bunny.

Then there are the visible tremors. The ones you can’t hide. It seems like the more I try to fight them, the more pronounced they become. I even get weird twitches in the muscles in my face, thighs, hands and toes. I’ve been known to scare myself as my leg kicks out in front of me for no reason or my fingers start twitching.

Multiple Sclerosis is so unpredictable. Most of the time I’m okay when the bizarre things happen. But to be honest, I have moments when it really gets to me. It seems like those times have been happening more and more lately. I try hard to not focus on the symptoms or the unknown craziness of this disease, but when things get to the point where I’m feeling the weight and sadness pulling me down, I do what we all do…I let it all out and cry, scream and sigh feeling defeated.

When storms come and bring about a lot of damage, it’s only natural to experience sadness and grief; to feel overwhelmed, misplaced, uncertain of tomorrow and simply hoping to get through today. But once the shock is over, that’s when the rebuilding begins.

So after I allow myself a good cry and have vented every emotion imaginable, I remind myself that I’m not defeated and that it’s time for the rebuilding to begin. That’s not always easy to do, but it’s doable. Give yourself a break. Pause and have a piece of pie. Don’t be so hard on yourself for being human and feeling. Take a deep breath, wipe the tears, blow your nose and keep going.

How can anyone be positive while living with Multiple Sclerosis

Being a positive person while living with multiple sclerosis sounds like an oxymoron. Is it even possible to do both at the same time? Some would say it can’t be done. They would say that life becomes too full of uncertainties, pain and complications that there is no way to face it with a positive attitude. But it can be done and is being done by thousands of people around the world every single day.

How is that even possible? How can anyone keep a positive attitude while facing continual challenges?

I think we have to first determine what being positive actually means. It has been misunderstood and improperly defined for far too long…so much so that it has been an impossibility for many to attain to in the midst of hardships of any kind.

Being positive has nothing to do with how many jokes you can tell, how funny you are, or laughing all the time. It’s not about living in an I Love Lucy episode. It’s not about hiding from the reality of what you are dealing with and trying to cover up the struggle in an attempt to keep people from knowing that you’re hurting.

Hard times are real. Tears happen. Pain hurts. No amount of covering it up or denying its existence is going to make it go away or lessen its troubles. Let me tell you what it means to be a positive person while living with MS.

Being positive means that even when you are facing the darkest storm of your life, you get out of bed to face the day. You may not look pretty. You may stay in your comfy clothes all day. You may veg on the couch the entire time, but you get up.

When pain has you doubled over in tears, you keep going. People that say MS is not painful are idiots. I have heard that some of those people are even doctors or MS experts. Well, me and a world full of MS patients will set the record straight. MS pain can cause even the toughest of tough people to want to give up, but you don’t.

When your brain is foggy and your thoughts get all muddled, you push through the murkiness. Sometimes that means you talk a little slower, use the words doohickey and thingamajig a lot, need help with even the simplest of tasks and confuse left with right, but you push through.

Even when your life has flipped upside-down, inside-out and stays in a constant tilt, you keep fighting because you simply refuse to be defeated. The tears flow, tempers rise, thoughts rage, and confusion happens, but through it all, you find a tiny ray of sunlight, a smile, a bit of hope to cling to.

You see, it’s alright to have negative thoughts when your path bends the wrong way or the unexpected happens. Don’t beat yourself up when negative feelings, thoughts, or even words creep into your life. You haven’t done anything wrong. That’s just a part of being human. It’s okay to be real. It’s okay to feel. The challenge is to not let those negative things grab hold of you and keep you from actually living.

Being positive is about allowing yourself to feel all those crazy, mixed-up things yet still having hope for a better tomorrow…and sometimes a better next 5 minutes. No quitting is allowed today. Hang in there and keep going. You got this!

Smiley Face

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.

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 week 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
  • 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?!