How I do it… living with multiple sclerosis

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When people ask me how I do it, how I get through my day living with multiple sclerosis? I’m not really sure how to respond. The best answer I have been able to come up with is, “I just do it.” I know that’s not a deeply profound response and Nike already has rights to the saying, but the question is not really something that can be answered.

MS invaded my life without my permission. It simply moved in and took over. It’s not something I can simply choose to no longer have around. If only it were that simple. To just say to MS, “Get lost.” Wouldn’t that be incredible? Only I would use some rather different words that might offend some people and would be sure to have a battle axe and a few hand grenades along with me too.

Since I can’t force MS out of my life, I have to learn to live with it. There’s no other choice. I can try ignoring it, but ignoring something screaming in my ear and chiseling away at my insides isn’t possible.

From the outside my invisible struggle doesn’t seem so bad to people. It actually looks quite easy. But if you could look inside my body and truly see what I am dealing with every day…Oh, my, what a different story you would have to tell.

If there was a picture window into my life, people would see that my Central Nervous System (CNS) looks much like the chaos after a storm has blown through town tearing up everything in sight. Some areas in my CNS have been damaged, others completely destroyed. The foundation is still there, but the pipes have burst and the electricity is out.

After a storm people work tirelessly to patch things up as best they can to try and get their house back working, but it will never be the same. There will always be remnants of the storm that came through and never a guarantee that another one won’t blow through again.

Today, I live in a pieced together body with duct taped wires, glued together pipes and heavily caulked walls. Things still leak, wires still get crossed and new storms still show up, but I “just do it.”

Elizabeth Taylor, who struggled daily due to lifelong chronic back pain, said it oh so well…“You just do it. You force yourself to get up. You force yourself to put one foot before the other, and [gosh darn it], you refuse to let it get to you. You fight. You cry. You curse. Then you go about your business of living. That’s how I’ve done it. There’s no other way.”

Not being able to communicate can be frustrating

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I lose words more than I lose my car keys…and they’re harder to find too. I think conversations with me are more like a game of charades than actual conversations. I’m sure it frustrates those I’m talking too as they try guessing the word I’m fumbling around in search of. It can become quite comical too as I point, make hand motions and slap my leg in an attempt to help the process along.

ME: Can you hand me…? [as I point across the room]

FRIEND: Uhhh…a pen? A glass of water?

ME: No [as I tap my thumb to my finger in a pinching motion unable to even describe what I’m trying to say. I sit in silence making hand gestures in hopes it resonates with her.]

FRIEND: Nail clippers? Scissors? Paperclip?

Minutes pass and all I’m trying to say is “Can you hand me the TV remote?” Simple, right?

Not being able to communicate can be frustrating. I do much better in writing. There’s nothing worse than trying to get your point across or share a meaningful moment with someone while losing the thought you were trying to share. Sometimes my attempt in describing a word takes so long that I actually forget the thought I had in the first place. It takes skill to keep me on topic. A skill I’m not always very good at.

Yesterday, I could tell my words were getting stuck and mixed up more than usual. When that happens, I have a tendency to not speak as much. I just don’t want to frustrate people… or myself.

You know how people say to pick and choose the arguments you get in. Well, I pick and choose each conversation I have as well. So if I choose to share a thought with you, it’s going to mean something because I chose to break out of my silence in order to chance a good flow of words.

I have noticed that the more frustrated I get, the more my words get stuck. The trick for me is to stay calm and not allow my mind to wander. That may mean I talk slower, talk more direct, or use shorter sentences. But that’s just my way of coping and working with my disability. It keeps me from getting overwhelmed. I say what I have to say and move on.

When you find yourself getting lost in a world of words, know that it’s okay. You’re not going crazy and you definitely aren’t alone. There’s an entire population of us hand gesture, charade playing, word searching MSers out there. Take a deep breath and have some fun as you turn your conversations into a game of Guess What I’m Saying. Laughing always makes things better.

Be a butterfly soaring in the wind

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Do you ever feel weird? Like you are not normal…if there is such a thing? I know I sure do. I tend to think differently than most people. I find humor in just about everything. If you hung out with me, you would find me laughing at dropping my plate full of food on my lap, joking about falling over while sitting to put on my socks, and giggling because I lost my keys for the hundred-millionth time.

At one time I lived life like a caterpillar. The only thing I could see day in and day out was the leaf I was sitting on. My world was small and limited due to multiple sclerosis and I couldn’t see very far. My life was surrounded by troubles that I couldn’t fix and neither could the doctors. I felt helpless and hopeless. Getting around in a powerchair had limited me more than I imagined it would.

But then a transformation happened. It took time and lots of work to shift my focus from my own struggles, but I grew the most amazing and beautiful wings. They changed my life. They lifted me up above my own troubles and helped as I spread my newly found wings as I flew above my circumstances.

I found the world to be much bigger than I had ever imagined. I saw not just my diagnosis with MS, but thousands upon thousands of others just like me getting through the struggle. There were trees and flowers and oceans and mountains. My disability was no longer my focus. There was an entire world to explore and there were people to help.

The other caterpillars on the leaf I started out on didn’t like that I changed. They wanted me to stay a caterpillar but once you find your wings, you can’t go back. I discovered that I liked being weird. I liked the beautiful butterfly I had become. I liked bringing sunshine and smiles to others around the world.

Much like the caterpillar, many times we get stuck in our troubles and struggles and only see life from a small place. We perch on our leaf and see only our pain, frustrations, difficulties and troubles. We convince ourselves that we are comfortable where we are not realizing that there’s so much more to living.

It’s time to become the beautiful butterfly that you are; to spread your wings and fly into the wind; to see life from a place above multiple sclerosis, financial difficulties, relationship problems, pain, and stress on the job. I’m not saying to pretend those things don’t exist, just let your focus shift to find the good around you, even in a chronic disease.

Can you think of one good thing that has happened in your life because of MS? I know you would have no problem coming up with pages of bad, but name something good. For me I would have to say simplifying my life by weeding out the work and people that I didn’t need around me became a good thing. The process was tough, but in the end I found I am much happier because of it. Also, I gained new friendships with people that I never would have met before.

I’m able to spend more time developing my artistic skills through painting and writing even when tremors and fatigue get in the way, and I no longer have to wake up before the sun to the buzzing of an alarm clock. Because of MS I don’t have a need to wake up with an alarm clock since I’m already up before the sun. My alarms are now needed for reminders to not forget something, not morning wakeup calls.

Be thankful for the good. As you do, you will begin to see more and more good around you, and before you know it you are no longer seeing life from the perspective of a tiny leaf, but from the wings of a butterfly soaring in the wind. Be that butterfly!

You can’t control multiple sclerosis

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Living with multiple sclerosis isn’t as easy as some people make it seem. It’s not like I can will my body into behaving or talk my muscles into working. Mine seem to have revolted all on their own. I don’t need anyone to pull me down with their words. MS is doing a pretty good job of that on its own.

I have days when I find myself dealing with physical symptoms like tremors, pain, weakness, numbness, vision problems, and muscle spasms. Enough to cause me difficulties but not enough to stop me from continuing on in my day. Then there are times when everything becomes so intense, when the pain and weakness grows so deep, that it bleeds over into every part of my life as it tries to get its grubby little hands on things like my thoughts and emotions.

One thing I have learned over time is that MS is not a disease you can control or keep to yourself. We try though…don’t we?! I know I do. I try to keep the effects of MS neatly contained in its own little space hoping to shield myself and those around me from its impending destruction, but it seems the more I try to contain it, the more it spills out. It’s kind of like trying to rake the leaves in my yard into a pile on a windy day. What a futile task. No matter how hard I try, they just won’t stay where I put them.

Regardless of what anyone thinks, we need people, especially when living with a chronic illness and even more so at this time of year. It’s a time when the weather is unforgiving. It has this sneaky way of causing our nerves and muscles to go a bit haywire as the hot temperatures creep into our lives limiting what we can accomplish on our own. Humidity is the worst.

As the summer progresses more and more cookouts take place. It’s amazing the things we have to consider when receiving an invitation to an outing. Is the location accessible? Will there be adequate air conditioning to keep me cool? Will my body play nice? Will I be able to manage the traffic? Will my finances be stretched too thin, above and beyond any past due medical bills? Will people understand my decision to stay at home or that I had to cancel plans last minute? Will they even invite me in the first place?

Real friends get it though. I was once told, “You can count your true friends on one hand and sometimes on one finger.” How true is that?

I know it’s not always easy to do, but be determined to fill the days ahead with the love of a few close friends. It really does brighten the dreaded summer days. If you can’t get out, invite someone over for a special movie night complete with pizza and popcorn or even have a Zoom meeting with people you haven’t seen in a while. Sometimes something as simple as a text message back and forth with someone you haven’t heard from in a long time can give you a smile that lasts for days.

From one friend to another: do your best to find joy in the steamy hot days and always remember just how absolutely, positively, incredibly amazing you are. I sure happen to think so.