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!