Multiple sclerosis tried to break me

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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 treasure 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 I have 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 rough waters. Some have lost their vibrant color, others have lost their outward beauty, and still others have allowed deposits from the ocean 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 are my cracks, scars and the shattered fragments of my life. 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.

I admit that sometimes it takes everything I’ve got to simply get out of bed in the morning. Many times I don’t want to get up. I wake up before dawn and all the “stuff” I have to do, along with what I haven’t done and the problems that await me, comes crashing down and all I want to do is stay in bed and hide under the covers.

I take a deep breath and gather the strength I need and roll out of bed, sometimes even crawl, to start my day. It’s because of being broken that I am who I am…a battle weary warrior who has overcome much with unimaginable strength, determination and a refusal to give up.

You have cracks, scars and broken areas of your life too. The ups and downs you have experienced are real. Just because you are imperfect and living with a chronic disease doesn’t mean you are worthless. Each one of those things makes 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 above it shinning brightly. You are not broken…you are beautifully YOU… scars, imperfections, wounds, bruises, cracks, and all.

I lost my brain

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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?

Computer failures are a lot like multiple sclerosis

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Have you ever had one of those days where everything seemed to start off going great but then things shifted and everything went wrong? Where the unexpected happened more than once and you hadn’t even gotten out of bed yet? Those days can be frustrating, irritating and make you want to scream. I’ve been there more times than I can count.

That’s kind of how I feel when my laptop starts acting up. It doesn’t happen often, but I have had times when my computer has failed me. I’m a fix-it-myself kind of person. A techie geek who thrives on having a well running computer. I will visit online forums reading from people who know more than me in order to resolve a problem.

One time I had a person reply to me on a message board, “Since you’re getting that error, you need to do this and this.” So, I did this and this, but it didn’t work. Then someone said, “No, you need to click that and change this.” So I clicked that and changed this but that didn’t work either.

I attempted suggestion after suggestion with still nothing fixing my problem so I ended up doing what we all do, I went to the experts. When I brought my computer in to get it checked out even their diagnostic programs were unable to pinpoint the problem. Their answer, “We need to replace the logic board.” (That’s just a fancy word for the board inside the computer that handles all the communication processes.)

Computer failures are a lot like multiple sclerosis. You may have difficulty with spasticity in your legs and someone will say, “You need to take potassium. That’s what I do and it worked great.” You buy some to try and you become disappointed because it doesn’t help for you.

Then someone says, “No, you need to change how you do this and do that instead.” So you do what they suggest and still no change. Then someone else comes along and says, “No, no, no, they are all wrong. You need to eat this and take this other thing.” So you do it…and again no change.

So many solutions for just one problem, yet because we are all unique and we all have a different internal wiring system, what works for one person may not work for another.

The biggest thing I would like for people to understand, both those who live with MS and those who don’t, is that every person’s internal “logic board” may connect all the same parts together, but somewhere deep inside where no one can see, there’s a malfunction in those of us living with MS that has disrupted the communication between our brain and our body.

Sometimes a simple tweak or adjustment here or there does the trick and we are up and at em’ going strong once again. But sometimes the “logic board” has failed to the point that no one, not even the experts, can pinpoint where the failure is taking place.

It would be amazing if we could simply replace our body’s internal “logic board,” but we only have one so we have to take care of the one we have as best we can. My response to the barrage of fixes and solutions people push my way…”Thank you for your suggestions, but I know my body and am doing what I believe is right for me.”

Everyone wants MS to be cured, especially those of us living with it day in and day out. How about instead of pushing the latest craze or fix, we chose to love each other and simply be there to support a persons decision in how they believe their MS should be managed. Giving someone a hug or holding their hand is so much more comforting than pushing internet solutions and unfounded cures or fixes at them.

When everything around you seems to be falling apart, know that you are not crazy or alone. There are others feeling the same way. Do what you believe is right for you to do and don’t get discouraged by all the nay sayers, experts and trendies. Always remember this one thing: Even though your body has failed you, you are not a failure. You are an amazing, strong and resilient MS warrior. You got this!