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?!

When the simple things are no longer simple

Most people don’t have to think about doing the simple things in life like answering the door when an unexpected visitor arrives, picking up some toilet paper at the grocery store or helping out a friend until something like multiple sclerosis comes along and messes with those seemingly simple tasks or plans. Sure, they have to juggle other plans around in order to fit the sudden change into their day, but most of the time those shifts are simple to make.

For me, in order to “run errands,” the timing has to be planned perfectly to ensure I have the energy for the remainder of my day. Not planning can end in disaster…meaning, can end in me vegging on the couch for hours just to regain enough strength to help me manage the remainder of my day. Some errands can set me back days…not just hours.

It’s that way with just about everything. I have to think about the simple things more than people should. For example, take the act of walking. That may seem like a strange thing to have to think about, but when I stand up to walk, I have to make sure I have the proper supports around me to keep from falling down. Then I have to concentrate on each step, movement, leg shift and foot lift. It takes GREAT effort and tremendous thought to do something as simple as walk.

If I need something in the kitchen, I can’t just jump up and get it. If I drop something on the floor, many times that item will remain where it landed until I have the strength to reach down and pick it up. By the way, that can mean it will remain on the floor for days. If someone comes to the front door unannounced, it takes so much energy to transfer to my wheelchair and make my way to the door only to find out it’s a solicitor wanting me to try their restaurant take-out service, that’s why most of the time I just don’t answer it.

When MS comes into our lives, the things most people take for granted become something we are grateful to still be able to do. We know that one day everything will change, the unexpected will happen, life will throw us a curve ball, and shifts will have to be made to even be able to do the simple things. No amount of planning prepares anyone mentally for those kinds of changes.

If you find yourself frustrated because you need to fill up your gas tank on your way to work today or because you need to pick up some cheese for tomorrow’s taco dinner, stop and remind yourself that you are still able to do those things…and be grateful for the little things no matter the inconvenience.

Don’t take anything you are still able to do for granted. Those things may take extra time to work through or you may have to get creative in the way you do them, but in the end you will have accomplished something greater than great. You will have done something some people are no longer able to do.

Don’t give up, don’t give in and keep going while you can. That’s what makes you an MS Warrior. Plan B, C, D, and sometimes even Z, ZZ, and ZZZ have become a part of my everyday life and I’m okay with that. I will keep trying, keep going, and shift with the changes until I no longer can.

Comic strip - I don't know

Advice from the experts…those actually living with multiple sclerosis

I asked people living with Multiple Sclerosis to share a piece of advice that they feel would benefit those newly diagnosed with MS. The response was overwhelming and very informative. I put together a list of their answers and hope it will encourage even those who have been living with MS for years.

If you are newly diagnosed, know that you are not alone. If you have been living with MS for years, sometimes reading a list like this will encourage you and help you to shift your focus back to things that are truly important in life.

The most recurring advice from people living with MS
  • Stay calm, you are not alone.
  • Stay positive. You will have good days and bad days.
  • Surround yourself with positive people.
  • Laugh.
  • Exercise.
  • Fight, fight, fight.
  • Have faith.
  • Take one day at a time.
  • Don’t panic.
  • Love yourself.
  • Keep living.
  • Be your own advocate.
  • It’s not the end of the world.
  • Listen to your body.
  • No matter how hard it is, DON’T QUIT.
  • Breathe.
More great advice, information and help from some amazing MSers

Not everyone’s MS is the same. What course of treatment works for me, for your cousin’s best friend’s boyfriend’s grandma, or your neighbor may NOT work for you. – Erin

Kick people who tell you about someone they know with MS climbing Everest or cycling around the world…so you can too. Oh, and get the old person attitude of saying what you think. – Leigh

Don’t start the meds the next day. Investigate, talk to others who use the meds, read up on them, join MS groups, get a couple of 2nd opinions, find a neurologist who knows about MS (not all do). Do some investigating on your own. – Melissa

It’s time to take exceptional care of yourself in EVERY way because you are sick and need it. And your life will thank you for it. Don’t listen to the horror stories, just live it up and REFUSE to LOSE. Rest when you really need to but not so much you forget how to walk. Practice walking every day so your brain always remembers how. – Chelle

Be who you are and not a diagnosis. – Chris

You know that song by Time McGraw, Live Like You Were Dying? Listen to that. Then pick yourself up and give it your best shot. – John

Drink lots of wine. :))) – Aistė

Don’t tell everyone right away, just those closest to you. I made that mistake. I spent most of my time trying to help everyone else through my diagnosis. People created so much drama and negativity. I wish i would have waited until I was more adjusted myself. – Cindy

Don’t wake up looking for your MS symptoms. Get on with your day just being you and live your life. Be prepared to rest and alter your day if your MS decides to appear. Sometimes it does good to slow down and “remember to smell the roses.” – Jacki

Just because they are doctors that specialize in MS doesn’t mean they walk with it. Research the things they tell you that sound off or weird. Get 2nd opinions. If your gut says no, then it’s probably a no. – Chula

You are allowed to fall apart…for a little while. Then get back up, smile and get on with it. – Odette

The journey has a lot to do with you…your attitude, discipline, diet, exercise, supplements. The best doctor is Dr. You! – Vince

Hold on, it’s a bumpy ride. – Shari

Know that your MS is unique to you and you only. Don’t get scared if you know of someone with a hard hitting, rapid progressing form of the disease because that doesn’t mean it will happen to you. Listen to your body and do what makes you feel better, and never underestimate the power of exercise, healthy diet, rest and laughter. – Danielle

Say hello to the new you. Never compare yourself to who you have been. – Sara

Never let anyone, especially yourself, make you believe that your symptoms are not real, or not that sever. They are real, own it, accept it, learn from it, and learn how to be happy around those limitations. No matter how many comparisons people make, remind them (and yourself too) that they are irrelevant to your issues. Your MS symptoms are just as valid as anyone else’s medical issues. You have value, and the hardest work you can do is making sure you believe that. When MS symptoms hit…and they can hit like a truck, you are valued. You are valued in those who love you, those who treat you like a person, and most importantly, you are valued by yourself. The most important person to be valued by. – Rich

Get YOUR GAME FACE on! – Jyme

Someone will love you for you…be patient. – Steph

If your body says it’s tired, rest! I used to think I was Wonder Woman and had to do everything in one day. My philosophy is that it will be there tomorrow. It’s not an easy journey, but you got this. I am a firm believer that if He (God) brought you to it, He will bring you through it. – Cathy

Only read stuff online from reliable sources. I over read and freaked out. – Netty

The worst scenario you have in your head may not be your destiny. Take it one day at a time. There are scientists working on this, and I think there’s light at the end of the tunnel. Keep pushing on. – Jennifer

Pray lots. Pam

…When you find that you can’t do the things you like to do because your MS won’t let you, be creative and find other ways to make it easier to do those things. Find a new hobby that your MS will allow you to do and don’t be afraid to ask for help from someone. Allow yourself to have more time to get things done. I like to have supper at 5:00. I would start at 4:00 and have no problem, now I prepare everything ahead of time like cutting up my onions, peppers or any thing else that can be done early. Just learn to adjust your routine with your MS so that you can still feel like you are on task. Give yourself extra time to get to where you have to go. Leave earlier then you would normally leave so you don’t feel rushed. Do the things you love but in a different way. – Karline

This episode will improve, but your health will now be unpredictable and never the same again, so make the most of life when you’re feeling good and be prepared for set backs. – Stephanie

Learn to laugh at yourself, because the world is going to laugh. BE KIND TO YOURSELF: allow yourself to have those days when you don’t belong on a ladder to change a light bulb and perhaps shouldn’t leave the house unescorted! – Kathy

You are always gonna be YOU, never lose sight of that. – Evie

Every day the ninja living inside of me kicks some MS butt

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

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

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

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

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

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

Hiyah! KA-LAPOWABOOOM!

Things I wish more people understood about Multiple Sclerosis

Lately I think I have experienced every emotion imaginable. I have cried more than usual, lost my temper for seemingly stupid and even unknown reasons, and become more withdrawn than I ever thought possible simply because my body and brain won’t cooperate.

I can literally feel the changes happening in my life, so much so that if I allow my thoughts to linger on my increasing weakness and struggles, it scares the crap out of me. (That’s just me being honest.)

It’s hard to talk with people about those fears and the crazy emotions I deal with mainly because, 9 times out of 10, I am met with “Oh, it can’t be that bad” or “You just need to think more positively.” I find it to be exhausting trying to explain progressive MS to people who aren’t willing to actually listen.

Here are a few things I wish more people would try harder to understand about life with Multiple Sclerosis:

1. There is no cure

No matter what you read online or hear people say, there’s nothing that has been proven to eradicate the disease from a person’s body aside from a miracle. There are symptom management techniques through supplements and diet and medications that work to slow the progression down, but that’s not a cure.

2. My symptoms are unpredictable

One minute I may be doing well managing the pain, weakness, sluggish thought processes, and vision difficulties. The next minute I may need to climb into bed and be unable to move for hours. I am not being lazy. I’m taking the rest my body needs in order to function. You have to remember, it’s fighting every second of every day just to survive.

3. Things will get worse

I know you think that’s not being positive enough, but no amount of not talking about the truth will help others (or even myself) come to terms with my reality. MS is progressive. That means that as time passes, symptoms will build and my life will become more difficult. I need to prepare for the possibilities of tougher times so I’m not caught off guard when they happen. Help me to not allow my difficulties to be the only thing I focus on, but allow me the space needed to face the truth.

4. I need help

Just because I don’t ask for help every time I do something doesn’t mean I don’t need it. From my perspective, I see the burden I have become on others and know that in the future it will be an even greater need. I also know that I can’t give back like I could in times past. Those thoughts weight heavy on me at times. Regardless, never stop asking if you can help. Just the asking makes each day better because it shows me you care.

5. Please invite me

I know I am limited in the places I can go because I have to ensure accessibility and that it’s not too late or I’m not too tired, but please don’t decide for me if I can join you for a time out of the house. You may hear “no” more times than yes, but I feel included when you ask.

6. Little things matter

I know it may sound silly, but a text asking how I’m doing or just to say “thinking of you” makes any day brighter. So does picking up the mail, dropping off a meal, doing a load of laundry, taking out the trash or just sitting for a chat. Those things matter more than you will ever know.

7. Don’t get offended

I have a brain that can’t keep information in order. If I don’t remember a special date, have trouble putting words together into coherent sentences or I’m not engaged in a conversation, don’t hold it against me. Most of the time it’s difficult to keep things organized in my head. Even with lots of notes and reminders I still confuse things.