You are a multiple sclerosis winner

I always wanted to run a marathon. To experience the exhilaration of crossing the finish line after miles and miles on the road. Being able to say “I did it” to all the naysayers and those who never thought I could stick it out. To prove to myself that with a lot of hard work and determination, the rewards are worth it. To proudly display my medal on the wall as a reminder of just how far I’ve come.

I never ran that marathon and as things stand right now, I won’t be able to do so even on my good days. But you know what I discovered? I realized that every day I am a marathon winner. Every time I get myself up to face the day whether it’s just to enjoy a fresh cup of morning coffee without spilling it on me, to take a shower in order to make myself look presentable to the world, or simply to do a load of laundry…I push through the near impossibilities of those tasks and wind up a winner.

To the general population of people in this world, those tasks seem simple and mundane. They are things we take for granted never realizing how precious even the simple things in life are. But living with multiple sclerosis has given me a greater perspective on life and on what we value in this world.

Life is not about the career or the fancy cars. It’s not about the parties or how big of a name you make for yourself. It’s about believing in yourself when you’re at your weakest. It’s about pushing through the darkest of days and coming out of them better than when you went in. It’s about never giving up. Those triumphs happen more than I ever realized they would.

I know for me, I can point to the medal I got when I went grocery shopping last week by myself and was able to return home with everything on my shopping list or the one I got because I made it through an hour of physical therapy and was able to do a few more stretches than I thought possible. Then there’s the one I got from vacuuming the floor. That one was intense. But my favorite one is the one I got from making the bed. That is the one I’m super proud of. It left me with a bruised shin, worn out legs and a new load of laundry to do, but I did it.

Every day you have the potential of being great. Don’t let the fact that you can’t do something stop you from living. Do what you can with what you have and then do a little bit more. Cross the finish line at the end of your day knowing that you did everything you could do even if all you could do was a bunch of little itty-bitty things. Hold your head high because even in the little things you win.

You may not be able to run a real marathon, but don’t let that limit what you can do. You are a winner every day. Wear your medals proudly, you earned them.

I Crumble In The Summer Heat and Sweltering Humidity

Last summer the heat outside kicked my butt. I tried all the normal tricks to remain cool and keep my core body temperature down, but no matter what I did my body grew weaker as the summer progressed. I’m not looking forward to the coming hotter days.

It’s crazy to get exhausted just going to the mailbox. That short of a trip and I’m ready for a nap. I have learned to take things as they come and listen to my body even though it’s not always easy to do. It can actually get quite frustrating.

Sometimes I will have my heart set on going somewhere then not have the energy to go and have to cancel plans. Or I have something that needs to get done but it doesn’t get done for days and days and days just because I can’t muster up the strength to do it. If I could, I would hire a maid to clean for me, a cook to make my meals and a chauffeur to take me places. Now that would be the life! Include getting rid of MS into the mix and that would be my dream come true.

 

 

 

Real friends love you the way you are

We live in a world where people are more concerned with getting their 15 minutes of fame than being real. Think about it for a minute. We are surrounded by hair weaves, reality TV, manufactured food, and plastic people. People that are too self absorbed in themselves to care about anything else. They will do anything to get ahead in life including using you to obtain the goal of wealth and or personal status. The users in life, the takers…those are the plastic people.

If you are wondering which of your friends are fake, just reach out for help when you have a need…a real, genuine, deep need. Do you see which ones are still standing with you? Those are the real ones. Many times they aren’t even the ones you thought would be standing there.

It’s those fair-weather friends that will drive you crazy, nuts and bonkers all at the same time. They come around when they need something from you, they ask you to dinner with ulterior motives like to fix a dripping faucet, and they use a connection with you for a quicker way to the top. They fake smiles in your presence all for their own gain. You notice it when the tables are turned and you come to them for a cup of water, and…whoosh…they’re gone. Not to buy you some water, but to latch on to the next person that will feed their ego and power trips.

When a crisis happens in your life, that’s when the fake people get weeded out and the snakes are revealed. You may still have a few invisible friends hanging around through it all ― those people who call you friend but you never see ― but to me they don’t count since you don’t ever see them.

If multiple sclerosis hasn’t weeded people out of your life yet, give it time…it will. That’s not a bad thing though. You want to make sure the people in your life are the real deal. Fake friends seem to create too much drama, and we all know that a person with MS doesn’t need any more added stress, issues or negativity surrounding them.

A real friend loves you just the way you are whether you have warts, an extra toe, or MS. Hang on to them and be sure to let them know just how special they really are.

Be like Piglet today…

“Piglet sidled up to Pooh from behind. “Pooh?” he whispered.
“Yes, Piglet?”
“Nothing,” said Piglet, taking Pooh’s hand. “I just wanted to be sure of you.”

― A.A. Milne, Winnie-the-Poo

When multiple sclerosis collides with the rest of the world

Chaos to someone living with multiple sclerosis is different than chaos to a healthy person. Our kind of chaos includes a world of broken nerves hidden deep inside our bodies. The only problem is  that there seems to be a sign posted at the entrance to this grand attraction that reads “No admittance to the general public.”

We have no way of showing people the latest expedition or the mammoth death-defying rides that exist here, complete with loop-de-loops and upside-down twisted rails. We try to explain how they feel and what they look like ― those weird moments when the walls begin to move and the sidewalks trip us up ― but somehow our explanations of what is happening in our world is met with disbelief, blank stares and “it can’t be that bad” statements. But, you see, it can be and it is.

Our world is alive and constantly changing from one day to the next, and sometimes minute by minute, second by second.  Today, the carpet may be our friend and tomorrow it may choose to wrestle us to the ground. Gravity does its best to drag us down to its level and inanimate objects are constantly rearranging themselves at will, trying their best to trip us up.

Just this morning my coffee cup took a flying leap off the counter. It must have decided the floor needed more caffeine than I did. Oh, how wrong it was. I poured myself a second cup and have been enjoying my cup of brew even though I have already gotten a coffee stain on my t-shirt. I need a shirt with a design that celebrates those kinds of stains. It would be my everyday wear.

It’s not easy navigating through two different worlds at once like we have to do every day, but somehow we do it. I know it’s hard to believe that such a place of MS chaos and confusion exists, but it does. It is filled with fatigue, tremors, pain, numbness, spasticity, dizziness, pain and a host of other problems. When the world of MS collides with the rest of the world, BAM! a new chaos is created that even we have a hard time figuring out.

Our days are filled with trap doors, boobytraps and earthquakes that spring up out of nowhere. When the sun sets and our day is over, we discover that we have accomplished more than most people do at the end of their day because we have not only navigated through impossible obstacles and overcome death defying feats, but we have kept ourselves from destruction as well.

Our mission each day is simply to get through all that’s in front of us. Our journey is long. Step by step, moment by moment, day by day, we survive. Nothing will stop us. We are valiant warriors and we refuse to let MS win…so we fight!

It’s okay to laugh while living with multiple sclerosis

When terrible things happen, one of the first things to disappear in the chaos is laughter. Somehow all the smiles and giggles that once filled the day get tossed to the wind and pushed aside giving other things more importance. Things like fear, anger, sadness and worries.

For many people, laughter just doesn’t fit in with all that’s happening in their crazy, mixed up world. I mean, how can anyone laugh when their life is falling apart. It just seems impossible…absurd…oh, so wrong.

After being diagnosed with MS, in my head I had created a nightmare even worse than the one I was living. No one knows how long a difficult time with MS will last and laughter is one of those things that simply makes the steps lighter and easier to make. Once laughter is gone, everything else falls apart so much faster and harder.

I, myself, have been known to laugh through the tears. That’s kind of like those times when it’s raining outside while the sun is still shining. Seems impossible, but it happens.

Laughter is important. It’s needed. It’s what puts that little bit of sanity into the insane. It brings out the rainbows and butterflies, and chases away the clouds.

I can laugh about my weak legs, muscle spasms, inability to remember things, lack of coordination, and bathroom mishaps. Granted, some of those things can be embarrassing and bring me to tears, but I choose to laugh anyway. Laughter has this wonderful ability of helping to lessen the pain.

Laughing doesn’t mean I’m ignoring reality. It doesn’t mean I’m being careless, ignorant or naive. It just means that I am putting down all those weighty, life altering thoughts and moments for awhile in order to rest and build up the strength needed for the upcoming journey.

Never apologize for laughing and don’t ever feel guilty for enjoying life in the midst of the struggle. The person that can enjoy the journey regardless of the potholes, ditches, mud puddles, and pain is a rare breed. Be that rare breed.

Don’t let the things you are facing today take away your ability to laugh. Nothing is impossible with MS, the word itself says it all ‘I’m possible’! Wear a smile through the tears, go against the flow and allow yourself time to laugh, really laugh…and keep on laughing. It does the body good.

A life with multiple sclerosis is a life of change

When you come to a place in life and nothing happening around you is “normal”…well, at least no longer your normal, take heart. Days change, times change, seasons change, life changes and we have to learn to shift with those changes. Some changes will come along and they will excite us. Things like a new baby in the family, a graduation, a promotion, a surprise gift. Those things are welcomed and make us smile. They bring joy to our heart and cause our insides to dance.

The changes we seem to cringe about are the ones that put a spin on our life and upsets the balance we have been used to. Things like losing the ability to do something, ending a career, shedding friendships, and all unwelcome shifts to our daily routines. Multiple sclerosis does a pretty good job at that. It has changed every aspect of my life…unpleasantly and uninvited.

When multiple sclerosis came along, things I didn’t know could change…changed.

Hearing Difficulties

I have a loud ringing in my ears that just showed up unannounced and unmuteable one day and has yet to leave. How rude!

It has given me trouble making out what people are saying because there is a constant noise that seems to muffle all the sounds around me. The odd thing about my hearing is that with all the noise going on, I seem to have developed super sonic hearing and can hear people in the next room that others can’t seem to hear. Even whispers.

Many noises scare me like a knock at the door or the buzzer on the dryer. All normal sounds. They just happen unannounced and cause me to jump out of my skin.

Breathing Troubles

The dreaded MS hug was one of the first symptoms that arrived causing me great concern. It’s like having a boa constrictor constantly wrapped around your torso and it randomly chooses when to squeeze. It knocks the breath out of me all the time and can be quite painful.

Vision Difficulties

Another problem that first arrived was a loss of color clarity. It was so odd. As a graphic designer all of a sudden I was unable to see my work as it was created to be. I was seeing everything in grayscale and had to use my training in color theory and memory to create something appealing. Although I regained some color clarity, it has never returned entirely. It still bothers me. Just knowing that I can put a graphic together that makes sense…makes me happy.

When I try reading there is a shadow to all the words I see. It’s almost as if there’s a duplicate fuzzy focused letter sitting beside each letter causing everything to appear like double vision.

I also have blurred vision that makes driving difficult and even watching TV unpleasant. The more tired I am, the worse it gets. Because my hearing has diminished (not due to old age) I use closed captioning to watch TV. Without it on I miss out on what’s happening. Although I have to watch with my left eye closed to stay focused on the TV screen, I can still enjoy what I’m watching.

Itching Skin

The constant feeling of needing to itch my skin for no apparent reason is annoying. Even while typing this, really just hunting and pecking out the words, I have been scratching my nose and for some unknown reason there is an itch needing to be scratched on the palm of my hand. Nothing makes it go away.

Swallowing Difficulties

This can be a bit scary especially when it happens mid-swallow of a drink. It’s almost like I have to remind my throat to work. I came close to choking on my coffee one day. I have learned a few tip from speech therapy that has been life saving for me. It’s hard to explain but it helps to slow me down and complete a swallow when I’m having trouble.

Tremors

The involuntary movements that drives me crazy. I could make a milkshake without a blender if I just attach a closed cup with all the ingredients to my hand. I use weighted gloves to help with my hand tremors and weighted eating utensils as long as I don’t try to throw them. That’s still possible.

My voice is a bit shaky too. I haven’t been able to talk normally for years. I don’t answer the phone for this very reason. I normally need a minute or two to get my voice ready to talk. I had one doctor tell me that at least I now have a sexy voice. It’s more of a strained whisper to me.

I never knew life could change that much so soon.

We can become angry, allowing the changes to drown us and swallow any bit of life we have left inside of us or we can rise above the challenges thrown our way and use them to become a better person.

I know you don’t want to become someone filled with bitterness and anger at what is happening in your life, but I also know that it’s not easy to rise above the challenges of multiple sclerosis and find something of meaning in the mess. If it was easy everyone would be doing it, right?!

In case no one has ever told you, I want you to know…you are strong and even though you have moments when you are ready to throw in the towel, I know you are not a quitter. How do I know that? Well, because you are reading this, you are pushing through, you are making it regardless of what’s happening. Even when you have days that you crumble to the floor in tears, you always get back up.

It’s not easy. Boy, do I know that. But you do it. You get up. You push through. You don’t ever let a set back, change, or shift in life stop you from living. Keep moving. Keep going. MS may end your ability to do something or change the way you function, but it can never keep you from living. Never forget that.

Today you are awake, breathing, your heart is beating, you’re alive. If that’s the only thing you can be thankful for…that’s enough. Take this day one moment at a time, one step at a time, one second at a time. The hard times won’t last but the strength they build in you will. I’m proud of you for choosing not to quit.

I lost my brain

Today I was jolted awake with the thought, “Oh, no…what day is it?” It was a sudden thought. One that I didn’t have time to fully process. My brain just couldn’t seem to work things out on its own. It was as if someone had poured sticky, gooey, hot molasses all over it. At least molasses would have been a valid excuse for the sluggishness I’m experiencing. Having an MS brain isn’t as easily explained.

On days like today when my brain just doesn’t seem to be able to process one single thought properly, I find myself working extra hard to make up for it. I pause while I’m talking to help as I’m searching for the right words to say, I take notes to help keep me on track, I even defer to others so they can finish what I’m trying to say. It’s amazing how extremely exhausting all that is. Thinking to think is hard work.

This morning, I can’t even do that much. This morning is an “I lost my brain” kind of morning.

I can only imagine the person who accidentally stumbles across this weird looking blob called my brain lying somewhere between the mailbox and the bathroom. It’s this strange looking creature full of scars and holes. None of which helps me out. They actually hinder everything I do.

Will they even know what they have found? I hope my brain returns soon because as of right now…all I can do is simply roll over and go back to bed.

I think my brain ran away because it was having to work too many hours and decided it needed a vacation. I wish it would have let me in on its plan though because I would have loved a vacation right about now. Anyone up for a trip to the caribbean?

What multiple sclerosis has taught me

Yesterday, I had the scary experience of my legs choosing to quit holding me up. I don’t know if they were tired or just wanted to take a break, but in the middle of a standing transfer to my power chair they decided to give way which meant my body met the floor rather quickly. I wasn’t planning on a visit with the floor any time soon, but there we were, face-to-face.

So many times when our bodies quit working as they should, we become discouraged. Those helpless times open the door for our thoughts to run wild with fears, and sometimes we find ourselves growing tired in the struggle.

This journey that we’re on—this journey called life—I know it’s not perfect. It has many hurdles and obstacles that keep jumping in the way. We can allow those difficulties to make us angry because our path has become hard and seemingly impassable, or we can choose to be thankful for the lessons we learn along the way.

I know it sounds crazy to be thankful while facing a monster like multiple sclerosis every day, but it’s possible, and you can be too.

What lessons? For me…

MS has taught me to hold it together when I would much rather fall apart.
MS has taught me to keep going when it would be so much easier to just throw my hands up and quit.
MS has taught me to rise up in strength when every part of me is weak and weary.
MS has taught me to always be grateful in the good times and to find the good in the bad.
MS has taught me to allow the tears because they provide water in the desert.
MS has taught me to sing even when I have no song left to sing.
MS has taught me to laugh in the face of sorrow.
MS has taught me to join hands with others just like me so no one has to face this beast alone.

What great life lessons. Lessons I have never regretted. You see, I have discovered that I am weak. My emotions, my thoughts, and especially my body…all weak. Friends may not understand the battles that I fight or realize the fragility of my life, but even when I’m alone in the journey I will hold my head high.

MS has made me strong in ways I never thought possible. I stand strong even while lying flat on the floor.

My strength is not something that can be taken away, it is something that grows with each passing day. Instead of allowing the struggle to defeat me, it is only making me stronger. I am strong because of my journey with multiple sclerosis, and that, I would never trade.

Stand strong in your weakness. Hold your head high and proudly wear those battle scars…those bruises and scrapes you have collected over time. With your sword in hand, charge forward in the fight. You are not defeated. You are just getting started.

When challenges keep coming

Lately my days have been more of a struggle to manage than in times past. I find myself waking up later than usual, my pain intensity has increased, my mobility has decreased, I’m having a harder time swallowing, the constant ringing in my ears is not just annoying but making life extra challenging, and the tremors in my hands keep me from being able to do things like I used to.

One thing’s for sure, I have discovered I’m still good at throwing things regardless of my tremors. I actually threw my phone all the way across the room yesterday because my hand just took off all on its own. I wonder how fast it flew. I may have just set a world record in phone tossing.

You’d think I would have learned by now not to hold onto anything of importance, but somehow I never remember. Thankfully, I’ve not broken anything due to my awesome throwing skills.

Seven years have passed since my diagnosis and a lot has changed. I have gone from enjoying a flourishing career, hiking trails through the woods, and traveling around the world to not even being able to stay focused long enough to watch a movie and recall what just happened. I find myself pausing and rewinding scenes (sometimes more than once) just to keep up. Anyone watching a movie with me would be so annoyed.

It’s not easy seeing things progress like that. I don’t notice the changes day to day. I see them more by looking at how I was able to function a year ago and how I’m functioning today. That’s the only way I can really distinguish the difference in my everyday life.

I have found over the years that I need people around me that will let me vent when I need to, but also who won’t hold it against me when I break down and have moments of being overwhelmed. I understand how important it is to look for the good in everything, and I try to do that more than most people, but when I talk about my struggles I want to be free to express my reality without someone shutting me down because I’m not positive enough.

People need to understand that talking about the truth of what’s happening in your life isn’t wrong. It’s not unhealthy to say “I’ve got multiple sclerosis and it scares the crap out of me.” It’s okay to be afraid, to cry, to get angry. Don’t ever let someone lay a guilt trip on you because you’re having a bad day or because sometimes you cry yourself to sleep. It’s actually quite a normal thing to do.

What I want to encourage you to do is allow yourself to feel (really feel), give yourself time to grieve when needed, just be careful not to stay in that place for too long. Living with a chronic disease is not easy. That’s a guarantee. But pulling yourself up out of the pit you find yourself sinking in is possible too. That’s a guarantee as well.

Try this, instead of looking back and only seeing the bad changes that have happened over the years, find some good. For me, I see that I’m becoming an expert at keeping my passwords safe, not only from others but from myself too. I’m good at staying away from the cookies on the top shelf in the kitchen, I save gas each month because I’m not going out as much and I have to admit I make a pretty mean peanut butter and jelly sandwich.

I have also discovered that my life didn’t end when MS became a part of it. Sure, it made thing really, really difficult, but when I allow myself to step back and look at the entirety of my life, I have to admit that there’s still a lot about living I enjoy…regardless of the struggle.

Don’t focus so much on how you are no longer able to do something or how much you have lost and find the good around you. There is a lot more to life than MS. There is more to living than the struggle. Focus on the good today. It’s kind of like the glass half full, half empty concept. Choose to chug it down and get a refill, only this time let it overflow. Smile, laugh, giggle, care, love, believe, hold on, and never give up.

My multiple sclerosis 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 power chair 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. 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 I could have another 10 hours to 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 distant planet in a galaxy far, far away. After all, it works for them. I must be doing something wrong.

I discovered that multiple sclerosis messes with people’s thinking. That it doesn’t fit so neatly into their limited box of understanding. They reject my reality because they can’t physically see the disease that I’m living with and the destruction that’s taking place inside my body. Trust me, if I could turn my body inside out and you could see this monster in action, you’d understand.

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 actually happen, but each day is a chance to open people’s eyes.

You know, even though times get 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 an MS warrior and us MS warriors are stronger than any body builder, olympic athlete or prize fighter ever could be even on our weakest days. You aren’t weak. You are MS strong!