I never thought I would be living with a chronic illness

I never once thought I would be in my 40’s living with a chronic illness, surviving on Social Security because my disease progression forced me out of a career I loved, staying home much of the time because of mobility and accessibility difficulties, requiring regular visits from a home healthcare nurse to help me manage everyday life, and losing friends left and right.

My plans were so much bigger than that.

I dreamed of greatness. I was going places. I was doing things. I had arrived.

It’s important for everyone to understand that our journey in life can change at any given moment…for the good or for the bad. It will be filled with victories and defeats. It will twist and wind through the mountains as well as plummet into sink holes and ravines.

Yes, the journey is important. It’s great to have goals and plans, to be able to reach for something bigger than yourself, to dream. But what I have found to be even more important than winning and losing, bigger than the highs and lows in life, is learning how to handle those victories and disappointments. That’s what matters. It’s not the actual winning or losing that counts, it’s how you win or lose.

I grew up in a huge football town. We took winning seriously and losing hard. When our team won we would have victory parties in the town square with everyone excited and partying through the night. When we lost, although the atmosphere would be more solemn and there would be a lack of cheers through the crowd, we still gathered and celebrated in our loss.

I learned how to win big and lose gracefully.

So when life threw me a curve ball and brought an end to everything that I thought was wonderful, instead of screaming “Why me?” or becoming bitter and angry at the dramatic change, I shifted with the change to find something to celebrate…even in my loss.

Sure, I lost my mobility, strength, career and many friends, but I gained something through it all. I found hope in the darkness. I developed strength out of weakness. I learned how to smile in the pain.

How did I do that?

I decided that regardless of the disease that is ravaging my body and changing my life, that I would find something each day to be grateful for. It may be something little and at times minuscule, but it’s still something.

Today I’m grateful that I woke up to clear skies, birds singing outside my window and a fresh cup of coffee to be able to sip on as I write to you. I wish it was something more than that like I won the lottery or multiple sclerosis was cured while I slept, but I’ll take what I can get.

There is always something to celebrate in a day. Find yours and choose to rejoice in the small victories rather than wallow in the defeats…even if you find yourself lying in a hospital bed, sitting alone on the couch or trudging through rush-hour traffic.

Hold your head high and know that regardless of the speed bumps, the pitfalls and the unexpected turns, you can still find joy in the journey if you look hard enough.

If only the world could see the life we live

You have been through so much lately. You’ve crossed hurdle after hurdle going from one doctor’s appointment to the next. You’ve made your way through danger more than once in the past year alone. You’ve climbed mountains that no one even thought were scalable and yet you overcame the odds. Every day seems to present itself with challenges, but somehow you find a way to get through them.

Admittedly, You don’t always win. You don’t always cross the finish line at the end of the day, but the most important thing is that you never quit. Sometimes you find yourself questioning everything happening in your life. Sometimes the dreaded questions “why me?” and “why now?” run through your thoughts but they never seem to come with definable answers, only more questions.

What do you do when faced with a life of Multiple Sclerosis? Where do you go from here? How are you supposed to function in an able-bodied world that doesn’t seem to understand the complexities of living with MS?

The answer…you just do it!

You drag yourself out of bed each morning exhausted, weary, overwhelmed, and at times feeling completely defeated, but you muddle your way through the day anyway. Some days are better than others. Some days you can walk, other days you can’t. Some days you find yourself laughing, other days even a giggle seems impossible. But you do it anyway.

Today may be one of those impossible, unimaginably difficult days. I won’t lie to you, life with MS is hard. There are surprises around every corner; some good, some bad.

Sadly, a majority of the awareness campaigns for MS don’t actually tell the world how ugly MS can be. They show the smiles and the brave souls walking their way through a 5k with their arms raised in victory, but what about those who can’t walk. Or the ones that have trouble speaking, breathing, eating, seeing or functioning in a so called “normal” world? Why are those people never seen or shown as the face of MS?

Yes, there have been great strides made in helping people manage their MS symptoms and new treatments are being discovered that help slow its progression down—for that I’m enormously thankful—but when is the public going to see that MS isn’t just an “Oh, well it could be worse” kind of disease? When are they going to be shown the reality of what it actually does to a person’s life and body?

My hope is that some day soon people will see the reason we fight every day, but also the pain we endure. That they will understand just how much we overcome on a daily basis. That yes, we may put on a brave face, but deep inside we carry around an uncertainty of how long we will be able to wear our brave.

Every person fighting MS is brave, every one is amazingly strong, and every one is on a journey of uncertainty. We hope for a better tomorrow but we also hope for a world that will truly see MS for what it really is…a chronic progressive disabling neurological disease that has no known cure.

It’s time we let the public see the ugly side of MS and why we so desperately need a cure.

MRI of brain

Multiple Sclerosis…It’s 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 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 and one-liners. 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!”

Things I wish more people understood about living with Multiple Sclerosis

These past few months for me have been terribly difficult. 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 amout 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 tough 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 confuse things.

bear

Have you forgotten?

I have a favorite mug in my cupboard. When I make my morning cup of coffee or have hot tea later in the day, you will always find me looking for my red mug first. It’s rather funny too because I have a shelf full of mugs I could use that match with my everyday dinnerware, but I will go in search of my favorite one every time.

I’m not really sure why it’s my favorite other than the fact that it’s different…and red. I like things that are different. I always have. I have never been the kind of person that does things just because everyone else is doing them. Everything I do, I do on purpose and with meaning. I guess that is what makes me, me.

That’s the only reason I wake up and fumble my way through the weakness and pain to start my day. I know there’s a purpose for my life and that I am the only person who can do what I do. It’s the same with you. You are unique and important. Sure, there may be a cupboard full of people similar to you that could do the things you do, but there’s something so amazingly different about the person you are. You are the only one who can be YOU.

Have you forgotten? Let me remind you who you are.

You are precious, worthy, amazing, strong, brave, filled with potential and lots of wisdom, capable, and loved. You may never see your name in lights or be picked first at a game of dodgeball; you may be the last person in line, the slowest, and the least of the least in your mind; but you are a champion.

Each day you fight a battle that others will never see, and even on the days you can’t stand tall you still come up swinging. You are not a loser and you never will be. You are a mighty warrior. Sure you may be limping and weak, but even in your weakness you have a story to tell this broken messed up world what life is really all about.

It’s not about the fancy cars and the twenty room mansions. It’s not about the perfect bodies and the ability to outpace others. No, it’s about the love you have to share, the beauty inside your heart and the courage you face the day with. Let your voice be heard and never forget just how great you are.

You may have a chronic disease and be disabled, but that is not the person that you are. You are not your disease. You are YOU and a wonderful YOU that is.

My body is weak

People don’t seem to understand how weak and exhausted my body is at every moment of every day. I must wear this smile on my face really well. It definitely covers up the daily struggle of living with a chronic illness. Sometimes I think my smile is the only thing that’s keeping me together; that if it should fall off, I’d fall apart too. Somehow I get through my day with my smile in place…exhausted, weary and worn out, but still smiling.

For me, I’m in bed by 7 PM each night and I have to say, by that time I’m so weak that it’s a struggle to transfer from my wheelchair to the bed. You’d think getting to bed early would be a good thing, right?! But no matter how early I go to bed, I never get true productive sleep due to pain, muscle spasms, breathing difficulties and an overactive nighttime brain.

I seem to drift off for a few hours at a time and by morning, I’m exhausted just trying to sleep. I think I get a workout in the middle of the night. I’m not fighting MS only while I’m awake, but while I’m sleeping too. Who wouldn’t be exhausted fighting non-stop without a break? I can’t remember a time I woke up in the morning feeling refreshed and ready to conquer the day. Those days are long gone.

Morning comes and I wish there was a way to stop time so that I could have another 10 hours to try and actually rest. But time never stops, the day keeps going and I have to keep going with it.

It used to irritate me when healthy people would talk about feeling rested and how I just need to follow their magic routine and I’d wake up rested too. I’d try to explain that my body doesn’t work that way but few actually understood that concept. Many would look at me as if I was an alien from some far away distant planet.

I discovered that Multiple Sclerosis messes with people’s thinking. That it doesn’t fit so neatly in their box of understanding. They reject my reality because they can’t physically see the disease that I’m living with and the destruction taking place inside my body.

I’m thankful for those who get it. If my talking about a life with MS increases the awareness of this disease in just one person’s life, then I’ve accomplished something great. My dream is for the awareness of Multiple Sclerosis to become as wide spread as cancer awareness is. I don’t know how long it will take for that to happen, but each day is a chance to open people’s eyes.

You know, even though times gets tough, you will always see me smiling. It’s important to find something in this messy world we are living in that makes your heart happy, that makes you smile. At this very moment in your life, no matter how hard things may be or how much you may be hurting, pause and find that one thing that makes you smile.

Hold onto that thought, person, thing, or belief, then wipe your tears, take a deep breath, and smile your way through. Yes, your body is weak, but you are so much stronger than you think yourself to be. You are going to make it and in the process, you will help expand people’s understanding of life with a chronic disease. You will be a part of bringing awareness to the world.

Real friends

Living with Multiple Sclerosis will weed people out of your life

One thing Multiple Sclerosis has done for me is weed out the people in my life that were only there for the ride, not the journey. So many times people proudly boast about the great numbers of people they know and pat themselves on the back because they have a sea of people surrounding them, but are those people really friends? I can almost guarantee you that a majority of them are what I would consider fair-weather friends.

I’ve noticed that people seem to be great at hanging around when they are getting some type of reward or kick-back for being your friend. You know, the free food, tickets, perks, support that you are able to send their way. But when those things dry up and you become the one in need of their continued help, they suddenly have other things more important to do.

Life has taught me a few things—I guess you could say the hard way—about people. I have learned what true friendship is…and is not.

A friend is not…

  • the long list of people in your High School year book.
  • the person who friended you on Facebook, followed you on Twitter or added you on Instagram.
  • someone who attended your birthday party, lives in the house next door or says hello to you in passing at the office.
  • the person who gives you a piece of gum or hangs out with you at the mall.
  • someone who waves at you from across the room, bags your groceries or invites you to their wedding.

A friend is…

  • someone who is willing to go grocery shopping with you on the coldest, rainiest day of the year and allows you to change your mind ten times about which kind of cheese you want for sandwiches.
  • someone who puts up with your moodiness, hangs in there through the tears and listens when there’s nothing left to say.
  • someone you can call up at 3 o’clock in the morning to take you to the emergency room or help you with a flat tire on the side of the road.
  • someone who holds your hand when you get a bad doctor’s report and who never judges you when you have a melt down.
  • someone who genuinely wants to know how you’re doing, who goes out of their way to make you feel comfortable and who never walks away.

A friend isn’t the person who says they are your friend…they prove it every single day by the things that they do.

Hang on to those true-blue friends. You won’t have many…maybe one or two, but they are worth their weight in gold. Be sure to appreciate them and tell them how amazing they are. They need to hear it even if they say they don’t.

Take some time today to give them a call, send them an email or even a little surprise in the mail. Never take someone for granted who is willing to stand with you through a chronic illness and everything that comes along with it.

Living with Multiple Sclerosis will weed out the people in your life that shouldn’t be there, but in the end you will be left with the beautiful roses, orchids and daisies. Treasure the people that treasure you and never let them go!

As Oprah Winfrey once said, “Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down.”

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 up my glasses 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 LASIK surgery to surgically 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’s never experienced it before.

Sometimes just trying to read an email or 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; you slowly watch your body deteriorate. I can’t really see the change from day to day, but when I look back at how I was doing a month ago or a year ago compared to today, I find noticeable differences. And if I think too much on it, I can get really depressed about it.

What I have to do 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, 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, create 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’d be amazed at just how long of a list that actually is. I believe in you!

list

Things NOT to say to someone living with Multiple Sclerosis

We use words every day to communicate our opinions, frustrations, anger, appreciation and love. Many times we don’t even pay attention to the things we say or how we say them as the words tumble out of our mouths quicker than we can actually think. Those words have the ability to bring hope, tenderness and support, but they can also be used to condemn, attack and ridicule.

Occasionally the words people use when trying to help a person living with Multiple Sclerosis, hurt more than help. It’s my hope that those times happen unintentionally, but they still happen. In their attempt to do something soothing by passing on a few words of wisdom, those words come across more like a punch in the gut or a jab to the heart instead. So, just in case someone would like to know the words that hurt, pass this list along.

Things NOT to say to someone living with Multiple Sclerosis:

  1. You don’t look sick.
  2. You shouldn’t drink diet coke.
  3. OMG, this diet I’m on cures MS.
  4. OMG, this vitamin will leave you symptom free.
  5. Aren’t you gluten free? You should be.
  6. Try this herb; it helped my cousin’s uncles’ sister’s friend who has MS.
  7. Well, aren’t you taking your meds? (Yes….) Then why is your MS bothering you still?
  8. Are you contagious?
  9. You shouldn’t eat meat.
  10. What did you do to get MS?
  11. My aunt had that and now she’s dead.
  12. If the heat bothers you, don’t be in it… or move.
  13. I heard a vaccine caused it.
  14. Why are you dragging one of your feet?
  15. You need to get out of the house more.
  16. Maybe if you exercise more.
  17. Well, if you’re in remission, why are you on meds?
  18. That celebrity with MS seems just fine, why aren’t you?
  19. Are you sure it’s MS? How can doctors be so sure?
  20. Stop using MS as an excuse. You can’t feel that way ALL the time.
  21. Maybe you just need to try a little harder.
  22. Why don’t you try a different medication that doesn’t cause so many side effects?
  23. You seemed fine the other day.
  24. Why are you always so tired? You slept ALL night.
  25. Oh, trust me, I know EXACTLY how you feel!
  26. It really can’t be that bad.

Things I’ve learned from my journey with MS

Multiple Sclerosis has taught me the value and importance of living…really living. In looking back on my own journey, I have noticed the shift I made from being overly focused on achievements and promotions to building lasting friendships and choosing to enjoy the little things in life. Things like rainy days, moments of quiet, giggles and laughter, sunsets, butterfly kisses, “thinking of you” texts, and of course the much appreciated cup of coffee.

For me, spending time with the people I love, giving of myself to help the less fortunate, and spending some much needed time taking care of myself…those are the things that are important. If anything, MS has given my life a greater purpose because it has opened my eyes to seeing the value of life itself.

The following is the philosophy of Charles Schultz, the creator of the ‘Peanuts’ comic strip. You don’t have to actually answer the questions. Just read them through and you’ll get the point.

1. Name the five wealthiest people in the world.
2. Name the last five Heisman Trophy winners.
3. Name the last five winners of the Miss America.
4. Name ten people who have won the Nobel or Pulitzer Prize.
5. Name the last half dozen Academy Award winners for best actor and actress.
6. Name the last decade’s worth of World Series winners.

How did you do?

The point is that none of us remember the headliners of yesterday. These are no second-rate achievers. They are the best in their fields. But the applause dies. Awards tarnish. Achievements are forgotten. Accolades and certificates are buried with their owners.

Here’s another quiz. See how you do on this one:

1. List a few teachers who aided your journey through school.
2. Name three friends who have helped you through a difficult time.
3. Name five people who have taught you something worthwhile.
4. Think of a few people who have made you feel appreciated and special.
5. Think of five people you enjoy spending time with.

Easier?

The lesson: The people who make a difference in your life are not the ones with the most credentials, the most money, or the most awards. They are the ones that care.

What do you spend your time on? The key thing is to always remember that no matter what happens in life or how bad things may get, surrounding yourself with people who care and love you is what’s important. That’s what gets you through your day.

The people you remember are the ones that made a personal difference in your life. Strive to be that kind of person for others. You won’t be able to change the world, but if you make a difference in just one person’s life…that’s the world to them.