I didn’t choose this life with MS

I woke up this morning yet again to the reality of Multiple Sclerosis. Sometimes it feels like I’m stuck in the movie Groundhog Day. Do you remember that movie? Every morning the alarm clock would go off and the same day would begin…over and over and over.

I really wish MS would take a vacation, or better yet, pack up and move out, but instead I’m stuck in some endless loop of difficulties, chaos, foggy brain and pain. This isn’t the life I chose. I didn’t wake up one morning and decide “Hey, I want to live with a chronic illness so I can quit the career I love, struggle financially, endure rude comments and stares from strangers, and live in a state of constant struggle for the rest of my life.”

No, just like everyone else, I dreamed of a wonderful life where my passions were being fulfilled surrounded by loved ones and friends. But life doesn’t seem to work like we want it to, does it? And sometimes that really stinks…some days worse than others.

Many of those dreams are now untouchable and those friends have disappeared, but that doesn’t mean I can’t still dream. My dreams are just different now.   And those people that walked away, well, they weren’t really friends to begin with. Friends don’t leave when times get tough. The real ones stick around.

On days when you wake up and every muscle, bone and cell aches in your body, know that you aren’t alone. When you long for the days of yesterday at a time when life was good and although it had its heartaches and pains, it was easy compared to a life with MS, know that there are others who feel the same way. When you find yourself alone with no one to talk to and no one to care, know that good people do still exist and my hope is that you find those people in your life.

Your body may have failed you, but you are not a failure. You are a remarkably strong person filled with tremendous wisdom and greatness who just so happens to have this ugly MS hanging around. Don’t let MS steal your day today. Shake off those defeating thoughts, hold your head up, take a deep breath and seize the day.

You didn’t choose this life with MS, but today…choose to live. You got this!

What MS really feels like

What Multiple Sclerosis (MS) really feels like

Those long lists on medical sites that describe Multiple Sclerosis really don’t tell the full story. They list out symptoms that make MS sound no different than a vacation to the hospital for a broken toe. So here is MS according to someone who actually lives with it. Yes, there is humor in there somewhere. You just gotta laugh at MS or you will go crazy. Continue reading “What Multiple Sclerosis (MS) really feels like” »

red mug

Multiple Sclerosis – a life of change

It’s hard when you come to the realization that you are no longer able to use your favorite coffee mug because it’s become too heavy to hold. I am a coffee lover and have a beautiful red mug I have used for years to drink my morning coffee from. My routine is to make coffee in my red mug, sit in my favorite chair and savor a moment of calm before the world wakes up. Somehow coffee just tastes better that way.

But as Multiple Sclerosis has progressed in my body, keeping that routine has become difficult. I still make my morning cup of coffee, but no longer in my red mug. Now it’s in a lighter weight, no-spill blue mug that I find much easier to hold onto.

I fought making that change, but coffee stains on my shirt were not very stylish and I wasn’t a fan of being burned from hot liquids. Talk about a sad realization.

That kind of change has happened quite often in my life since my MS diagnosis. Some of the things I love or have used for years have needed to be put to the side because MS got in the way. It’s not something I wanted to happen…it’s just a reality of living with MS.

A few changes I have made have been letting go of the shoes that didn’t work with my AFO leg braces for those times I try walking, changing out my silverware for lighter weight ones that don’t exhaust my hands, placing a ramp at my front door so I could go in and out of the house in my wheelchair with greater ease, rearranging my kitchen cabinets so items I frequently use are easier to reach, removing the area rugs that get in the way of wheels and feet, adding a cord to the front door knob so I can pull the door shut behind me as I wheel myself out of the house, and adding a remote control deadbolt lock to the door so I can lock and unlock the door without fumbling with small keys. All of those changes were things I rebelled against doing, but they have made my life easier and more manageable.

I could have refused to make those changes, but I decided to accept what my body was telling me and adjusted life accordingly. Why make things harder than needed?

Changes happen a lot with Multiple Sclerosis. You find yourself having to adjust life in ways you simply didn’t want. Some of those changes hurt and some are easy, but never let the fact that you have to make a change get you down. Realize that changes are going to happen and decide to just go with the flow.

Embrace the changes no matter how hard or significant of a change they are. You will find that over time the addition of equipment to help you through your day or the removal of things that have the potential of making life more difficult is not something to be afraid of. Change is okay. It doesn’t make you less of a person because you need added tools or different things to help you out. You are amazing just as you are no matter what you can or can’t do or what equipment is needed in the process.


We are in this together

Opinions run rampant online. There are opinions about the best hot sauce, the worst kind of paint, the biggest pickle, the oldest tree, the most popular actor, and the greatest song of all time. Those opinions are interesting to hear, but without fail the discussions will turn into heated arguments and name calling. I never knew someone could be so passionate about a pickle before, but they exist.

I don’t know why people can’t accept the fact that not everyone will agree with something they think. Growing up I was taught to respect the opinions of others even if I disagreed with them. Slander, sarcasm and rudeness wasn’t involved. We simply agreed to disagree and continued to enjoy one another’s company.

Today, I don’t see that kind of behavior much anymore. It seems that most people’s opinions are expressed as fact and if you don’t agree with what they have to say, you are defriended, bad mouthed and talked about.

That happens a lot when it comes to a persons choice in how they approach their Multiple Sclerosis treatment. The world is filled with opinions on what to do. But keep in mind, they are opinions. Some are based on personal experience, others are due to information read online, which we all know is 100% fact…right?! (grin)

There is no cure YET for Multiple Sclerosis, only symptom management. Just because one person eased their symptoms by standing on their head while eating a dandelion and humming “She’ll be coming ’round the mountain” doesn’t mean everyone will. But hey, if you want to try it, by all means do so. Just don’t talk down to those of us who don’t. Besides, if I could stand on my head doing anything I’d be grateful. The only time that happens is when I fall out of my chair trying to tie my shoe.

To the people that don’t have MS who are reading this…don’t try to fix us. Accept us for who we are, MS and all, and love us anyway. Be our friend, not our enemy. There’s a lot more to us than an MS diagnosis. We are lawyers, teachers, mothers, fathers, bosses, neighbors, companions and classmates. We are people just like you. Sure we have a chronic illness tagging along with us everywhere we go, but it doesn’t define who we are. Look past our MS and see us instead.

To the people who have MS…respect other MS’ers choices. We are all in this together and need to be standing beside one another in the fight, not throwing punches. Let’s lock arm in arm and create a strong wall of strength that not only helps us to stand but keeps one another from falling.


The ugly side of Multiple Sclerosis

Most people don’t wake up one day and decide, “Hey, I want to be needy.” I’m sure you’ve had a friend at some point over the years that drained you emotionally, if not financially as well as in other ways, by being too dependent on you…too needy. And since you’ve personally felt the exhaustion and weariness that kind of neediness carries with it, you have determined to not be that person. Continue reading “The ugly side of Multiple Sclerosis” »