Multiple Sclerosis flipped my life upside down

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Over the years, there have been things that have tried to steal my smile. I have dealt with things that no one should have to face and still be standing to tell about it, but here I am… smiling. I tell you that because I want you to understand that we all have a dysfunctional, messed up, broken past. No one has the perfect life. We all have a past, we all have hurts, we all have dirty laundry, add to that a diagnosis of multiple sclerosis and I’d say my life has been pretty messed up.

Many times we are so focused on the big things happening that we often miss the little ones that really make a difference, yet it’s those little ones that make up our days and truly make our lives go around. I think sometimes we get so busy looking for the perfect place to live, the perfect job, the perfect spouse, the perfect kids, the perfect health, that we often forget what really makes our lives enjoyable. It isn’t the big perfect anything. What brings smiles to our faces are the little things that get us through our days and most importantly, through the hard times.

Sometimes it’s just a phone call from a friend or a person holding the door open for you at a restaurant. Sometimes it’s having a child hand you a fist full of weeds or being able to put freshly washed sheets on the bed. Sometimes it’s quiet times in the morning or noisy times at dinner. Sometimes it’s things you can’t even explain because it’s just a feeling you get deep inside.

It seems the big things are what flip our world upside down and it’s the little things that turn it right side up again. Without the little things, I think the world will end as we know it. It’s the little things that hold everything together.

Take time today to enjoy the small moments that bring you joy, and just so you don’t forget about them, take time to write them down. This way you will have a forever memory of those special moments. Fill the pages of a blank book, a notebook, a memory book, a computer text document or what I like to call a gratitude journal, with your happy thoughts; those things that made your day extra special or brought a smile to your face.

This way, when you are having a terrible upside-down day, you can read through those memories and find a smile to set things right again. Trust me… it helps. When I pull mine out and begin to read, without fail, I find myself smiling and sometimes even laughing. Those smiles and laughs, those memories… they happen because of the little things.

Make the most of your day today, live in the moment, and never forget the little things that get you through the darkest of times.

When taking a shower hurts

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It seems easier to think and cry in the shower. I have washed many tears down the drain in my lifetime. Lately though, showers haven’t been so freeing. This may sound weird to some of you, but much of the skin on my face, arms and legs have become so hypersensitive that even water hitting me from the shower head hurts. And when I say hurts…I mean HURTS! It feels like I’m being pelted with pin and needles.

I’ve been pointing the shower head to the side wall and filling a large cup with water to rinse the shampoo out of my hair. It makes bathing a bit more complicated, but if I don’t want to smell like a skunk after a long day, I have to change and adapt.

One thing I have noticed is that after a shower I am much more exhausted than I was before I even started. By the time it takes me to bathe, dry myself off, put on some deodorant, and get dressed, I have a hard time holding my eyes open.

If it’s morning I have to take a nap for about an hour or more. If it’s night time I need to be sure to dry my hair and finish putting on some lotion and skin moisturizer. By that time I crash in the bed for the night. I’ve been known to fall asleep curled up in my towel then I wake up with my hair dry and I look more like a drowned cat because sleep overwhelmed me. But regardless of how much sleep I may get, I still wake up exhausted.

I never really realized how much I was truly taking for granted in the past. But today, many things have become a challenge for me to complete that never did before. It’s as if each day, as I pull back the covers to get out of bed, I start my ascend to the top of Mount Everest. I don’t always make it to the top as the day comes to a close, but I press on anyway.

Multiple sclerosis is the disease that keeps on giving and taking away. But regardless, I refuse to let it limit or define me.

REMEMBER: You have this terrible, pesky disease called multiple mclerosis and it’s trying to take over your body, but you are not MS. You are an amazingly courageous person that can still love, dream, laugh, and hope for a better tomorrow.

I will never sugar coat my life with MS

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Have you ever had one of those days when you wished you could just curl up into a ball and hide away under the covers in bed because life was simply too much, too crazy and too overwhelming to bear? That was me yesterday. I woke up in tears… literally. That happens to me from time to time, only yesterday it hit me really hard. Harder than usual.

I hate when that happens. Sometimes no matter how hard I try to remain upbeat, positive and steadfast, I fail. It just goes to show that even people like me who strive to find the good in everything around them actually have times when they wish their out of control life could be put on hold and the pain had a pause button.

I’m human and I’m real. I will never sugar coat the difficulties of living with multiple sclerosis and I never want people to think that MS is a breeze to manage. Too many people out in the public don’t hear of the struggles we go through because too many MSers don’t talk enough about the truth of living with a chronic disease.

I am thankful for those living with minimal symptoms and that can handle the pain with ease at any given moment whether it be physical or emotional. But I know for a fact that’s not me. I talk about the struggles I face because I believe the more the public is made aware of what we experience, the more they will come to understand the reasons we have our unpredictable mood swings, cancel seemingly simple plans and spend so much of our time at home.

It’s not always easy for me to voice my needs. That’s because many times I don’t even know what I need in the first place. So when someone calls or stops by and asks how they can help out, I don’t always have an answer. It’s not because I’m being rude, antisocial or don’t want their help. Most of the time it’s because I simply can’t see past the pain in the moment to know what I truly need. That kind of thing requires too much thought and most of the time my brain just blanks out.

But I can tell you this, what ALWAYS helps is genuine care, concern, support and love. Those things help at any given moment and can be expressed through a simple “thinking of you” text, help around the house, offering to pick up some groceries, or just stopping by for a chat.

My greatest fear is to be forgotten in this fast paced, on-the-go world. It’s easy for that to happen too because many of us get to a place where socializing becomes extremely stressful and is filled with too many uncertainties and obstacles.

Getting out of the house requires great planning and considerations that many people don’t really think about. Will the place I’m going to be accessible for my needs? Will I have quick access to a bathroom when needed? Will I be in a place where I can remain cool? If a meal is involved, will someone be there to help me cut my food? If I get too tired (which is normally a given in my case), can I leave early? Does it cost because I live on a limited budget and even small expenditures are impossible to afford?

Any number of questions have to be considered in order to leave the house. Some days those questions are easy to answer, other times they are simply too much to face.

I woke up yesterday with my laugh-box broken because the questions in life smacked me in the face as soon as I woke up. If that ever happens to you, give yourself a break and allow yourself the needed time to grieve. Grieving is a real part of living with MS, and it’s okay to have those moments. Just try not to stay there.

I had my good cry already yesterday. The world may never see my tears, but they will always hear my pain. I refuse to be silent in the struggle.

Fall down seven times, stand up eight

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Fall down seven times, stand up eight is a famous Proverb that tells how attitude towards failure matters and makes a difference in your life. Don’t get bogged down by your failures but welcome them and keep trying over and over again.

From the moment I get out of bed I make a decision and take action. I figure I’m already standing so if I fall I know that standing is possible. My first stumble, falter or wobble is not considered a failure, but rather the start of my journey.

I tell myself, “You were able to stand once so don’t stop now.” At some point, I lose balance or my legs give out and I fall. I may shed a few tears and get mad at my legs for not cooperating but I muster up the strength to rise up and re-try.

At some point, I lose balance again and fall. It happens over and over again… but each time I keep re-trying. It can be exhausting but I refuse to quit. I may sit down for much of the day but at some point I gather the strength I need to try again. I put my brave face on, take a deep breath and try. I have become a pro at rigging up easy ways to fall without injury.

It’s ok to get angry. It’s ok to be frustrated. MS has this way of making you feel useless and unimportant. Don’t believe the lies it tells you and never quit. Don’t think for a minute that MS has won because it hasn’t.

What will the history books say about you? She was challenged daily with limitations caused by MS but she never gave up or she quit the first chance she had.

You are essential and needed. You have a voice and your voice matters. In every problem or conflict that you find yourself in try to solve it. Ask questions and use your voice.

We are all going to have some stumbles or all-out faceplants along the way in this journey called life. We have a choice; they can make us or break us. The fact is, in this so-called life or journey we are a part of, none of us are getting out of here alive, so we might as well make the best of it while we are here. We can just survive or we can use every opportunity we have to rise up.

Regardless of MS and the troubles it causes keep standing together and rise up each time you fall. You deserve love and are worthy of respect. You got this.

Multiple Sclerosis: How it began in my life

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I woke up one morning about 14 years ago and knew something was wrong… really wrong. The day started out just like it always did. My alarm clock buzzed me awake declaring a new day had begun. I sat up, stretched really big and yawned, only as I rubbed my eyes I could tell something was different.

I sat in bed and realized I couldn’t feel the upper right-side of my face. It was such a strange feeling. It wasn’t like I could have slept wrong pinching a nerve in my face. Was that even possible? And I knew an elephant didn’t sit on my head during the night because elephants don’t live in my neighborhood. What was it?

I spent a few days contemplating its cause. I think I was more hoping it would simply go away than anything else, but each day I woke up to more of the same as the numbness kept growing on the right side of my body: my head, torso, arm, leg and even my vision. That’s when I became concerned.

My diagnosis was a quick one due to the increasing symptoms that began appearing all throughout my body. The MRI’s were indisputable. They showed the damage taking place inside my body. My immune system was having a picnic creating lesions in my brain and spine. They seemed to be starving and my Central Nervous System was their food of choice.

Ever since that day, multiple sclerosis has been tagging along with me trying its best to define me. I’ve tried to shake it loose, hide it away, deny its existence, and even ignore it in hopes it would find somewhere else to live, but no matter what I’ve tried, it seems to simply dig its heels in deeper refusing to move.

For whatever reason, MS has made its home in my body but even though it is a part of my life, it’s still not who I am. I am not my diagnosis. I am not my symptoms. I am not MS.

My identity isn’t tied up in this disease. But do you know what else I learned? My identity isn’t my career, my talents or my style either. Because of MS my career ended, my talents became a struggle and my style became simple. Life changed and in the change I discovered I wasn’t any of those things.

But if those things are not me, then who am I?

I’ll tell you who I am. I’m a fighter who refuses to give up. I’m a warrior in the making. I’m brave, I’m courageous and I will never surrender. That’s who I am. Sure, days get hard and I cry much more than I ever thought possible as the world comes crashing in on me, but somehow I rise above the despair, the pain, and the heartbreak. Somehow I get through my day. Somehow I make it through the struggle. My faith in God, my tenacity and my never quit sprit keeps me strong.

I’ve learned to be thankful in all circumstances. To look this disease of MS squarely in the eyes and say, “I am not defeated because of you and I will never give up.” Sometimes I have to do that while shaking my fist in the air as I remind myself that even though I feel weak and broken, I am still a winner.

I’m thankful for my weaknesses. I’m thankful because they show me just how strong I really am. You see, my strength isn’t measured by the amount of things I can or can’t do. If that were the case, I’d be in a whole lot of trouble. No, my strength is determined by the attitude I bring with me while going through the chaos I face daily.

Don’t let MS define you. Don’t let the bad days determine who you are. With each passing day, you are an amazing warrior standing strong even though your body is weak. Some days the battle will overwhelm you but you will also have days when you will overwhelm it. Stay in the fight. You are not your MS. You are amazing. You are fabulous. You are incredible. You are… well, you are YOU!

How do you live with MS? You just do it!

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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 once diagnosed? 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 make your way through the struggle in your 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, regardless of what complications MS has given you, a 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 trek 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 so hard every day, but also the pain we endure. That they will understand just how much we overcome on a daily basis. That 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.

When did society stop caring for the sick?

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My biggest pet peeve is people who say one thing and then either do the exact opposite or nothing at all and prove themself to be untrustworthy. I’m finding it harder and harder to believe people will do what they say they will do…unless they are getting a paycheck in return (and even then they are not always trustworthy).

It’s sad really. As my health declines, my circle of friends have decreased with it. It seems that happens to everyone I talk to when it comes to living with a chronic illness. It’s easy to commit to helping someone for a month or two, but anything longer than that you become a burden to them and they find other things to take up their time.

When did society stop caring for the sick? It’s easy for someone to post a status online saying how much they care about others or share a cute picture of cats as well as ones of a beautiful flower garden to say they care, but to actually get their hands dirty and physically do something is waining. You just don’t see that happening much anymore.

People seem to want the recognition by the masses. They want the press coverage and plaques of achievement hanging on their wall to show off their accomplishments and prove that they care for others. I’m just sitting here at home needing my trash taken out and can offer a hug in return. Not much. But a hug will last much longer than any 15 minutes of fame. After all, a hug is eternal.

I am pretty good at faking being okay for a few hours if someone were to stop by to visit or I needed to go to the store. Make-up and hairspray does wonders. But come live with me for just a day and you will see how tough life with MS actually is.

Don’t just assume because I’m silent, that I’m okay. Most of the time I get tired of always asking people for help and getting excuses in return. That’s why I simply quit asking. Sure, you can fault me for that. I should be more persistent in voicing my needs. But the flip side to that is when I am persistent, I get a defensive response that basically becomes an “I’m sorry I can’t help you today, I’m busy” reply.

My advice: Hang onto those that have proven their word time and time again. Shower them with thanks and gratitude as often as you can so they know that their work and help is needed, valued and appreciated. Get creative and come up with a back-up plan for all the other people that disappoint you.

You might think you aren’t hurting enough. That there are people worse off than you and have been through more struggles. You may even think your story isn’t significant enough when you compare it to others and then the thought comes to your mind that people will think you are just seeking attention.

There is no measurement for pain, hurt and loneliness. No matter where you are in your story or what it looks like, it means something. Your pain is important because it’s yours. Your story can help other people continue their stories as well. Yes, all pain is different but there are things that we all share when the darkness comes and we feel hopeless.

At times you may even find yourself in a place where your thoughts fight back at you more viciously than they ever did before. Where you think and feel too much and just want to be numb to it all and left alone. 

I want you to know that you are valued.
You are important.
You exist.
You breathe.
You love.
You fight.
You hurt.
You feel.
And because of everything, because you are here in this world, you matter.

Never let other people’s actions keep you from knowing how amazingly incredible you really are. You truly are an beautiful person and not a burden. You may be living with an incurable, unrelenting, horrible disease, but you are AWESOME!

Laughter puts a bit of sanity in the insane

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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.

Oh, it can’t be that bad

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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 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 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.

Find your happy

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I was awakened this morning by a bird singing outside my window. Did I say singing? I meant loudly squawking at 4:00 AM without any pauses for air. What in the world is a bird doing up so early in the morning? Are worms even up yet? I think the worms are still asleep, which means this early bird isn’t going to get a worm for a few more hours. It would be nice if he would just go back to bed and let me sleep a little while longer.

What is he so cheerful about anyway? It’s not like he won the lottery or something and needed to let the world know about it. Whatever the reason, he woke up with a song in his heart and he is making sure everyone knows about it.

I had a friend like that. When she woke up in the mornings, she didn’t pause to collect her thoughts or to plan out her day, she was just immediately awake and cheery. It was super annoying too. I don’t wake up well to someone singing,

“Wake up, wake up you sleepy head
Get up, get out of your bed
Cheer up, cheer up the sun is red
Live, love, laugh and be happy”

I would think, “Yeah, you’re going to live, love, laugh and be happy when I whack you upside the head with this toaster.” But you know, I never did hit her with the toaster. I always made it through the morning, and so did the toaster.

I did notice that the song she would be singing, I would eventually be singing too. It wouldn’t happen right away, but eventually I would be eating my cereal and catch myself tapping my foot and humming along. Then, as I would be getting ready for my day, a song would come out. Before you knew it, I would be belting out a song from a movie or singing along with the radio. It’s kind of like when you hear a song in a commercial and you find yourself singing that tune everywhere you go because it somehow got stuck in your head.

Cheerful people can be super annoying in the wee hours of the morning, but you know, no matter how annoying they are, we could learn a lot from someone who wakes up with an instant song in their heart. The world could be crashing in all around us, storms could be blowing, tsunamis could be washing everything away, flood waters could be rising, yet there’s still a song to sing. No one or nothing can take your song away, not even multiple sclerosis. That’s something you own. You and you alone.

So this morning, find your song and sing it. If you need to collect your thoughts first like I do, that’s okay. Take the time you need to wake up fully, but once you are up and at em’, sing…sing your song with all your heart. Cut loose and let out the song that’s hiding deep inside you. And if you can’t find your song today, that’s okay too. Get around someone with a song to share. Before you know it, you will be singing it too. You might even find yourself dancing a step or two. Find your happy!