Yes, Multiple Sclerosis Is Real

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Sometimes it feels like my head is stuck in a shaken snow globe that’s waiting for the flakes to settle…only the flakes never do. That’s the dizziness and vertigo I’m experiencing right now.

Most days it seems I am fighting a never-ending battle. There are times I wake up thinking all is good and that the spinning is gone, but as soon as I get up and start going about my day…boom, it’s back. It never seems to go away for long. I think it just takes periodic bathroom breaks or trips to the refrigerator for a snack. I’ve tried to talk it into moving to Kalamazoo, but for now it has no plans on leaving.

Living with the vertigo, or any MS symptom for that matter, is not an easy thing to deal with day in and day out. It can cause you to feel like an outcast and all alone. For many, that’s the very reason they give up and withdraw from life.

I was tested for BPPV (benign paroxysmal positional vertigo). It’s when small crystals of calcium carbonate within one of the organs of the inner ear becomes detached and moves into another part of the inner ear causing dizziness. I didn’t have that. So it’s more of a mystery for now.

The pressure of trying to explain yourself all the time can be tiring, especially when those explanations are met with blank stares or unsympathetic responses. No one wants to be told to suck it up every time they are having a difficult moment. No one wants to feel like they are losing it because the people around them just don’t get it or care to want to understand.

Know that you are not delirious. What you are experiencing is real, and although it can be difficult to make it through your day, or even to get through the next 5 minutes, you have to keep going. I believe in you. Take it one step at a time… one breath at a time if needed.

I’m going through 3 days of Solu-Medro infusions to help restore some of the energy I have lost. I have no idea where it went but it seemed to take a vacation without me. I can’t stand up without my legs giving way within seconds. Trying to dry myself off after I shower is a near impossibility. I more drip dry than towel dry. So I just wrap myself in a robe to dry off.

I don’t have enough energy to squeeze a bottle of mustard for a sandwich. Driving make me dizzier than dizzy. All the movements around me affects my vertigo which goes haywire with just a hint of movement. So much craziness… and I hope the infusions will help restore some of my energy and give me my life back. For know it’s just a waiting game filled with lots and lots of hope.

Join me and choose to love yourself enough to hang on. Today is a new day filled with new possibilities. Remember, you made it through yesterday, you made it through some other really tough times too…you will get through today as well!

A life with multiple sclerosis isn’t easy

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I have never climbed Mount Everest but it seems like every day I scale its twin. Somehow this twin of a mountain is in front of me as soon as I open my eyes to start the day. As the morning begins I am faced with a new climb in my journey with multiple sclerosis, sometimes even before I pull back the covers.

One day I may be staring at a gigantic wall of rock that seems impossible to scale and the next day my path may be a gently sloping hill of grass. I never know what part of the climb I will be facing until it is there in front of me. If I had my choice, I would pick the gently sloping hills every time. They make it much easier when I fall down. Those rocks hurt.

But no matter what I am facing, the thing I keep reminding myself with each forward motion I take is to never give up…even if I am on unsteady, shifting rocks. A life with MS isn’t easy no matter what you are dealing with, but at the end of the day I lay my head down on my pillow knowing that I did the best I could. That’s what really matters anyway, doing your best.

Today I have to have blood tests done to make sure my white blood cell counts are good, then I have a load of laundry to finish and my kitchen needs to be cleaned up. All things I would much rather avoid, but they’re not going to get done without my help. I also have yard work to do which I want to wait for the early morning hours when the temperature is cool and my body is more manageable. That may have to wait for tomorrow. I just need to make sure I pause enough so I don’t get to weak and useless.

If you are facing an overwhelming pile of work that needs to get done before the end of the day or are weary from the difficulties life has handed you, take a moment to pause in your climb. When your emotions are going bonkers, the pain becomes too much, your blurred vision is limiting your view…pause. When nothing seems to be going right and your hope of a better tomorrow seems to be fading fast…pause.

It doesn’t have to be a long pause, just enough time to catch your breath. No matter what you may think, pausing doesn’t mean you are giving up. It actually helps to give you the strength needed to keep going. Pause, but don’t quit.

You really do have the strength within you to keep climbing, to keep going. I hope you pause long enough to find the added strength you need today. You’ve got this.

Living with MS you have to make a choice: Fight or Give Up?

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In this crazy mixed-up world I can’t stop thinking about all that has to be done just to hold our heads up. Between health issues, worldwide troubles, unpredictable wars, economic downward spirals… where can you turn to remove yourself from all the chaos and really do you want to?

I think of my father in these times. He grew up a farmer but was drafted into the army at a young age causing him to have to leave behind the farm life. He didn’t have much of a career choice at that point. He worked hard and transformed into a great soldier.

He took what life gave him and became the best he could be with the hand he was dealt. I am convinced that if he had the opportunity to go to school he could have become a doctor, a scientist, an artist, or even a carpenter. He was all of those things to me. His life ended early, but his legacy remains.

He taught me what it means to be strong and courageous. I saw first hand the life of a soldier: the struggles, heartaches, pain and fears. Yet through it all, he never complained that life wasn’t fair (even though it was) or looked at something as an impossibility. He lived a full life to the end and gave it all he had.

Because of my father, I am who I am today. He instilled the determination, courage and resilience of a soldier in me, only I’m in a different battle and fighting a different fight. The tactics are still the same though. I have chosen to take what life has handed me and to become the best that I can be.

You are in a battle too. Yes, there will be struggles and pain. There will be times you may be fearful of tomorrow or even of the next step you need to take, but you are soldiers, and soldiers march on. You don’t lower your weapons or lay down in defeat. You push to the end and give it all you’ve got.

Each morning when you wake up and open your eyes, before you even pull back the covers, you have to make a choice. Fight or Give Up? Which will you choose? Are you going to let the fact that you have to crawl through the trenches just to get your day started cause you to wave the white flag of defeat? Are you going to let the opinions of others and their negativity keep you from advancing?

My answer is no, I will not. Join me.

We are fighters, not quitters. We are soldiers in this battle with MS. We are thousands strong standing shoulder to shoulder and linked arm in arm. Together we fight.

When one of us is wounded, we come together to hold that one up. No one is left behind. We are powerful! We are brave! We are unstoppable! We won’t back down and we will never give up.

“Impossible” is not a word in our vocabulary. We prove that to be true every day. Get rid of the complaining, walk away from negative people… they will only weigh you down and hold you back. Remember, you are not alone in this fight. Now, let’s get out there and kick some MS butt. Oorah!

Vision problems and multiple sclerosis

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My eyesight has been giving me more and more trouble lately. When I wake up in the morning it takes me more time than usual to properly focus. I will prop myself up in bed and have to rub my eyes countless times just to see straight.

At that time of the day don’t expect me to be able to read a text message, email or anything else for that matter, without difficulties. If a text message is not responded to for more time than what was expected, don’t hold it against me. I will eventually get to it… by next year.

At the age of 12 I started wearing glasses and hated all the difficulties just trying to keep them clean or to not fog up in humid weather. Twenty years ago I got Lasik surgery to correct my vision. According to the Ophthalmologist, now my eyesight is 20/20. There’s a lesion in my brain that is causing me to have some blurred vision in my left eye but other than that, all is well there.

The problem for me is that the muscles in my eyes are weak and causing me to see a shadow beside each letter. It’s called double vision. It’s like a copy of the word is overlapping itself but slightly offset making a confusing mess. Even making the text display a larger scale helps to read clearer but doesn’t remedy the issue.

Just writing this post is cumbersome and takes more time than usual to complete. Of course I have become a hunt-and-peck typist unlike in my glory days where I could type over 75 words a minute. Between eyesight and numb fingers, I feel helpless with the internet.

And don’t even talk about telling me to use a speech to text app. The apps always misunderstand what I’m saying and interpreting it with a bunch of nonsense. Then once I correct the word errors, the punctuation takes extra steps to properly add. It’s a no win situation.

I have noticed when I’m watching TV I tend to close my left eye in order to view things clearer and to help keep me from getting dizzy. Yes, my eyesight makes me dizzy at times. Who wants to be on a rollercoaster ride while watching a movie? Not me! Thus the one eye method works. It’s like my eyes aren’t tracking exactly one with the other as they should.

My advice… relax and be grateful for whatever sight you have. Recognize the challenges that show up and look for the bright side through it all. Appreciate the adventures you may encounter along the way for there will be many.