My Multiple Sclerosis wonky vision

My vision is truly awful and has only continued to decline. There isn’t really a word to accurately describe my eyesight woes. Just when everything seems to be getting better, MS sneaks in with a double whammy. Bam kapow!

Years ago I had my eyesight surgically corrected and it was one of the best decision I could have ever made. I no longer had to wear glasses or deal with dirty and fogged up lenses. It was great waking up and not having to reach for my glasses just to function normally.

MS eyesight troubles aren’t corrected with surgeries or glasses. It’s cause is nerve damage related which doesn’t have a quick fix. Oh, how I wish it did.

In order to surf the internet I have to increase the font size of the page I’m reading and then view it with one eye closed. If I don’t close one eye, everything blends together and I see all of the words with a drop shadow. So basically it’s double vision. It’s exhausting reading that way.

But my vision troubles don’t stop there. I also have lost color clarity in one of my eyes making everything I see void of vibrant colors. I have crazy blind spots, vertigo due to my inability to deal with rapid eye movements, and weakness caused by that vertigo.

I have to take lots of pauses throughout my day in order to lay my head against my chairs headrest, close my eyes and calm the craziness. And driving, I don’t do that much anymore these days. You’d be amazed how challenging things can get due to my inability to accurately judge distances between my van and other cars on the road, and that rapid eye movement problem only intensifies when the scenery around me keeps moving.

Shopping is challenging too because I have to scan the aisles in order to find a product I want and then once I find it I can’t read the fine print on the packaging. Just the other day I bought some pizza sauce that turned out to be spaghetti sauce. I felt like such an idiot after I got home and realized my mistake.

And of all things hot days only makes everything worse. When I get really hot I will actually lose my eyesight altogether. I guess my blind spots all just blend together making one gigantic spot.

Losing my independence is not an easy thing to deal with. At least it isn’t for me because I hate having to rely on other people’s schedules in order to get help.

To see or not to see, that is the question…and it doesn’t have an easy answer. Don’t lose hope when you face increased disability problems. Do as much as you can while you can and give yourself permission to trust that other people will step up to help you out. My experience is that help comes when you need it the most and generally from people that you least expected to step up and help.

Stay positive and never give up. You got this…you will get through this! xoxo

The ABC’s of Multiple Sclerosis

A life with Multiple Sclerosis is filled with some crazy moments. It’s not a disease for wimps, that’s for sure. Take some time to learn more about the things those of us living with MS face.

A – awareness
There is still a huge lack of understanding by the general public about MS. We are not contagious, we didn’t do something to cause MS in our lives, there is no known cure and it’s not all in our head…well actually it is. Our brain MRIs prove that.

B – brain lesions
That’s just a fancy way of saying that our brain has wounds inside. Some of them heal well while others leave a nasty scar that disrupts the nerves used to make our body work. That’s the reason we do the things we do…most of the time. Some times it’s just who we are and has nothing to do with our brain.

C – cramps and spasms
Our muscles tighten up causing us great discomfort and pain. Any muscle can be affected from those controlling our tongue to our ribs to our big toe. Think of it as a constant Charlie Horse, just not always in the leg.

D – drunk walking
We have full intentions of walking without bumping into things but it seems the walls, floors, tables and chairs are our friends. They need some appreciation from time to time and we get to be the ones giving it to them.

E – eyesight problems
Our vision can become blurred, doubled, dimmed or even gone. Sometimes it’s even accompanied with pain and color loss. So if you see us wearing uncoordinated clothes or find us making funny squinting faces while reading a menu, no need to stare…that’s just how we roll.

F – falling down
We are professionals at falling. It’s our specialty. We can fall up a flight of stairs, getting out of bed, and even on flat surfaces. If there was an Olympic Sport for falling, we would be gold medal winners for sure.

G – good days and bad days
We don’t plan them…they just happen. Some days are good, some are bad and others are downright terrible. That doesn’t change over the years so if you ask if we are feeling better we don’t know how to respond. How we feel can change from day to day, hour to hour and minute to minute. Feeling better? Compared to what? Yesterday? This morning? Ten minutes ago?

H – heat sensitivity
Trips to the beach on a hot summer day, time in a hot tub or sauna, or even blowdrying our hair causes our symptoms to worsen. Air conditioning is a must. We are thankful for its inventor and would give him an award if we could.

I – IV steroids
Oh, the dreaded round of IV meds. Most of the time they help to lessen the inflammation in our brain and spine, but they create such terrible insomnia while we are on them that we may end up scrubbing the floors, power washing the house, detailing the car and painting the basement. Just don’t look at us the wrong way because they also cause terrible mood swings and have the potential of turning us into the Incredible Hulk.

J – jitters
We make a great omelet and can whip those eggs to perfection with our hand jitters. If only we didn’t keep dropping the whisk in the process.

K – krazy mixed up words
Toss our vocabulary into a blender and let the words get chopped to bits. Now dump them out and try to form a sentence or even a word…that’s about how easy it is for us to find our words at times.

L – laughing through the tears
We cry and cry often (most of the time you don’t even know it), but we laugh too and many times you will find us laughing through the tears. That’s not a sign of weakness. Our tears are just some of our strength leaking out. But don’t worry, give us a hug, spend some time with us or help us out when we need it…that’s all we need to be replenished.

M – memory problems
Sometimes it’s hard to remember schedules, appointments, names and even what someone said 5 minutes ago. Thoughts get lost more than our car keys. If only we had a “clapper” to help us find them.

N – numbness
Many parts of our body go numb much like when someone crosses their legs and their foot falls asleep. Oddly enough, we feel pain through the numbness. If only we could get them to wake up. We would gladly offer them some caffeine or an energy drink if it would help.

O – oops, oh well
Asking us to catch something when you throw it to us, and us actually catching it…now that would be something to cheer about. See, we get excited over the little things.

P – pain and more pain
Our pain isn’t because we hit our thumb with a hammer. At least that kind of pain you could see. No, our pain shifts and changes throughout the day and at times can become unbearable. So much so that even wearing socks or covering up with a sheet in the bed hurts.

Q – quiet please
Loud noises can be super annoying and seem to become amplified in our heads, so if you see us sitting in the quiet…we like that. Loud parties, restaurants and get togethers are taken in moderation so we don’t overwhelm our nervous system.

R – relapses happen
It’s just a part of life with MS…it’s called a progressive disease for a reason. It may take years for a relapse to happen or only months…though we pray for it to be years.

S – swallowing difficulties
It’s amazing how many muscles and nerves coordinate to do something as simple as eating. One nerve out of whack and we could swallow wrong. It takes concentration and effort to chew and swallow. That old saying mom use to say…don’t talk with your mouth full…we understand that all too well now.

T – tingling
Pins and needles is what we call it and they don’t go away no matter how much we try to massage that area. It’s something we learn to live with and try to ignore. But ignoring that kind of thing is about as easy as ignoring a spider crawling next to your leg.

No, that doesn’t stand for Under The Influence although we very well could be with all the meds we take. Our bladder causes us difficulties. It’s not something we like to talk about, but it is a reality of what we have to deal with. So when we say we have to go to the bathroom, don’t stop us. We may run you over.

V – vertigo
We don’t need to buy a ticket for an ocean cruise, we have one in our head every day. If only we could get a few Hawaiian shirts, drinks with little umbrellas in them and an all you can eat bar to make it feel more festive.

W – wheels, canes and braces
Oh the fun we get to have pimping out our walkers, wheelchairs, canes and braces. Now if someone could invent a zapper that we could use on people when they are rude to us because of our disabled parking tags or slow moving we’d be in business.

X – X-rays and MRIs
The rat-tat-tat noise of an MRI machine can be slept through. We know that from experience. Our medical charts are filled with images of our insides. I guess you could call us Super Models…we are so photogenic.

Y – yawn, yawn, yawn
We have a constant yawn from the moment we wake up until the time we go to bed. Being able to wake up rested is a fairy tale in a land far, far away that no one has found yet. It must be around the corner from Neverland or next to the pot of gold at the end of the rainbow.

Z – zings down the spine
If you want to know what it feels like to stick your finger in a light socket, just ask. Looking down at our toes while standing…zing, there it goes. A lightning bolt down the back of the neck and all the way to our toes. Maybe that’s what helps to light up the light bulb over our head when we get a bright idea.

Some say that I’m broken

Have you ever gone to the beach and taken time to truly examine the seashells that wash onto the beach? Some people are avid shell hunters and spend countless hours searching for the perfect ones. They are looking for beautiful coloration and formation. They don’t even contemplate collecting the broken ones, after all who wants a broken shell sitting on their coffee table?

But then you have people like me who enjoy going to the beach and stumbling across incredible little treasures along the shore. I pick up each shell that stands out to me as the waters ebb and flow over the sand. Some of the shells at first glance look like a perfect creation, yet once I bend down to pick them up, I find them to be a broken treasures instead. Those are my favorite kind and the ones I place in my pocket to take home.

I have a bowl full of broken shells that are proudly displayed for anyone who comes over to see. Some of those shells are beautiful pieces that could be made into an exquisite piece of jewelry, but most of them are fragile and broken from years of life in the rough waters. Some have lost their vibrant colors, others have lost their outward beauty, and still others have allowed deposits from the oceans environment to leave a lasting mark on their surface. Each one is broken and yet each one is amazingly beautiful.

Just like those shells, some say that I’m broken. They look at me—at my past mistakes, burdens, heartaches, and even at the fact that I’m living with multiple sclerosis—and all they see is cracks, scars and the shattered fragments of a life that once was. But the most amazing thing happens when you hold me up to the light. Not only will you see my imperfections, but you will also see what makes me beautiful. It’s because of being broken that I am who I am today…a battle worn warrior who has overcome much with unimaginable strength, determination and a refusal to give up.

You have cracks, scars and broken areas in your life too. The ups and downs you have experienced are real, but just because you are imperfect and living with a chronic disease doesn’t mean you are worthless. Each one of those things have made you uniquely you. You are not broken…you are a beautiful example of how someone can push through all the junk life throws their way and rise up through it all still shining bright.

You are not broken…you are beautiful. Never forget that!

Some days I feel about as useless as an empty tube of toothpaste

You don’t realize how many mornings I wake up and find myself unable to motivate, encourage and uplift others. Sometimes I am so down that I don’t even think I have anything left to actually give. Today is that struggle for me. I have often asked myself, “Who encourages the encourager because I could us some of that about now?”

But you know, somehow after I contemplate throwing my hands up in surrender and giving up, I find a bit of strength left to keep going. It’s not always easy to find but I find myself able to squeeze some out. It’s kind of like when you have an empty tube of toothpaste but instead of throwing it away you give it one last shot and get a few more uses out of it. Today, I feel like that empty tube of toothpaste. Used up, squeezed dry and empty.

The thing about it is that I know many of you face the day feeling the same way. You wake up feeling defeated even before the day actually starts. All motivation flies out the window or gets swept under the rug. I want you to know that you are not alone when you feel that way. I get there sometimes too. Yes, even the encourager gets discouraged.

Multiple sclerosis is kicking my butt. Lately I can’t hold onto much. Even my iPad is too heavy for me to hold onto. I think I dropped it at least four times yesterday. Dizziness is a constant, weakness is increasing, I find my voice is harder to eek out a syllable, my vision is wonky, and brain fog…wait what was I saying again.

I set my alarm to go off at 10 AM yesterday but when it went off, I forgot why it was even set. I am finding I need reminders for reminders and even then I forget what I was trying to remind myself of. Ugh! It’s such a vicious cycle.

One thing that encourages me is you. It’s true. You always remind me why I am doing what I’m doing and just how much you appreciate my efforts. You are my inspiration. You are the reason I do what I do. You laugh at my sarcastic, witty social media posts, you smile at my musings, and you encourage me. That is priceless.

Thank you for that.

If you are feeling defeated today, hang in there. There is still something left in today that is worth the effort. It may be tiny, it may be silly, it may be hard to find, but it’s worth the wait. Hang in there and know that you are too amazing and too important to end it all now.

Yes, depression is real and tears flow sometimes more than we care to admit, but know that you are not alone in this fight. You are going to get through this day. Take a break or even a nap if you need one. It really is okay to not have everything all together. You are only human and even humans lose it from time to time. Give yourself permission to break down. Then take a deep breath, shake off the defeatist thoughts and move forward. You got this!!!

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

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

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

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

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

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

flight attendant

All aboard the Multiple Sclerosis Express

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

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

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

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

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

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

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

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

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

I wish Multiple Sclerosis was no more

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

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

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

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

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

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

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

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

Multiple Sclerosis…it’s just all in your head

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

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

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

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

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

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

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

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

The day my world fell apart

One of the most difficult days in my life was the day I handed my boss the resignation letter that ended my career. I had been raised to take pride in my work and to work hard to make something of myself. Quitting just didn’t fit that mindset. It went against everything I knew.

I loved my work but as each day passed, I could see the drastic decline in my abilities. I was continually missing deadlines and would forget how to do even the simplest of tasks. What I enjoyed so much had become a struggle. I tried for months to make it work, covering up my mistakes with quick witted replies and longer hours, but deep down I knew it was time to make a change. I knew my decline was pulling those around me down and that they deserved better than I was able to give.

The thought of no longer working ripped me apart inside. I knew my work did not define me, but I could feel life changing so fast that it scared me. Life wasn’t suppose to turn out this way. MS wasn’t suppose to happen.

The worst part for me was when my last day finally came—the day I shut down my computer and turned the light off for the last time in my office. There were no farewells or goodbyes, no cakes or cards, nothing to even suggest my entire life was about to drastically change. That day ended just like every other day.

I remember walking to my car doing all I could to hold back the tears. My thoughts were screaming at me, “Doesn’t anybody care. My life is over. I’m scared and don’t know what I’m going to do,” but no one could hear the screams. No one saw the tears.

That night I cried myself to sleep. Depression hit hard. I didn’t want to do anything or go anywhere. My life became filled with PJ’s, TV reruns and tears. The grieving was real and it was slowly taking over my life. The worthlessness I felt was overwhelming.

The emotional roller coaster I landed on took me completely by surprise. After all, I was always the positive one. I was the one that could find the good in anything, but where was the good in a life-long career coming to an end? Where was the good in MS taking away something I loved? I just couldn’t see it.

It took time and a lot of hard work to pull myself out of the despair that swallowed me whole. It wasn’t easy either. I had to keep reminding myself every day that my work did not define me and neither did MS. I would tell myself, “I am who I am, and I’m pretty spectacular and uniquely amazing at that. Not because of what I can or can’t do. Just because I’m me.”

Eventually I stood tall once again, but I have to admit that I still have moments when a gush of tears show up. Even just yesterday as I sat on my couch reflecting on life, tears came.

I don’t think the people looking in at my life truly understand the extent of pain and heartbreak I still go through all because of a chronic illness that is slowly stealing bits and pieces of my life away. That kind of crushing and breaking…I hope others don’t have to go through.

If you are in a storm right now, know that no matter how hopeless things appear to be today, there is a brighter tomorrow. Keep pushing through the tears and the pain because you really do have a great future ahead of you. MS doesn’t have the final say. Plans may have to change and you may have to shift how you do things, but you are in charge of your life and you can accomplish anything you set your heart and mind to.

Cry if you need to, even scream if that helps you release the pain, but give your heart time to heal. I know it’s scary…the unknown. I know it’s terrifying to take a step forward when you can’t even see the road in front of you, but regardless of how you feel I can tell you with confidence that you aren’t a failure, stupid or broken. You are a somebody…and being a somebody is the best thing anybody could ever be.

Watching my life change isn’t easy

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

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

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

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

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

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

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

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