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Hang in there

It’s hard to not focus on how you feel when living with Multiple Sclerosis. Feelings have this way of ruling the day even when you don’t want them to. It takes a lot of energy to manage a chronic illness. That energy is wrapped up into every nerve cell in your body triggering not just pain, discomfort and weakness, but also anger, sadness and fear. That’s something people don’t seem to understand…both those living with an illness and those looking in from the outside.

I woke up this morning and everything was hurting, even my hair and clothes. Who knew nerve endings were in those things? It would be nice if there were some magic pill that would take everything away…and I’m not just talking about MS either. I’m talking about all the craziness that comes along with it. Sometimes there’s just too much change to even wrap your thoughts around and you find yourself wishing everything would all just go away.

I have days when I’m strong, but I also have days when I’m a wreck both inside and out. It’s funny though…people looking in on my life wouldn’t see it that way. They would see me as a strong, resilient, never quit, go-get-em kind of gal. Someone who keeps standing with every punch thrown her way and who seems unmoved by her circumstances. But that’s only because they can’t look inside my life and see the battles I fight every day.

I fight back tears with a silly little joke. I fight pain with a giant cup of coffee. I fight weakness by staying busy. I fight loneliness with a movie. I fight stress with a song. Every day is filled with a bunch of little fights, sometimes one at a time and sometimes all combined into one giant mess. Fights that at times I didn’t even know I was fighting. Yet here I sit, bruised, battered, and beaten up in this war we call a life with Multiple Sclerosis.

Do like me, take those battle scars and wear them proudly. You are an overcomer even when you don’t feel like it because you are winning battles left and right. Maybe you can’t do this or that. Maybe life has changed more than you ever dreamed it could. Maybe you are tired, weary and simply worn out. But I know you are not a quitter.

Focus only on today. You are going to make it through still standing, even if only on the inside. I believe in you. Hang in there.

snowman

Baby it’s cold outside

Cold weather is not my friend. My muscles and joints choose to stop working the colder it gets thus making walking and moving any muscle especially difficult. If you were to ever see a snowman walking (or is it snowperson? I never get those things right), I think I would be what that looks like. I can totally understand why bears choose to sleep through the cold. I need to take a long vacation to the Caribbean right about now…or hibernate for the winter. I’m open to options.

Between my hands having trouble holding onto things and my legs freezing up, I’m a bit of a sight during the cold weather months. I’m definitely not looking forward to having snow. Have you ever tried maneuvering a wheelchair through a foot of snow? Talk about stressful.

Because so many people with MS choose to remain indoors during the coming months, it’s a time when depression has a tendency to creep in. Parties are in the making, gatherings are happening and get togethers are more frequent among friends.

I don’t think people understand the things we have to consider when receiving an invitation to go someplace this time of year. Is the location accessible? Will the wheels on my walker or chair leave wintery slush tracks on someones nice carpet? Will my body play nice? Will I be able to manage the crowds and traffic? Will my finances be stretched too thin? Will fatigue hit hard keeping me from being a part of the fun? Will people understand my decision to stay home? Will they even invite me in the first place?

Although this time of year can be difficult, don’t let depression walk in the front door…or the back door for that matter. I know that’s easier said than done, but try to keep the gloomies out. Find something you enjoy doing and stock up on all the supplies needed to keep you going for awhile whether that’s knitting, drawing, writing or movie watching. Get creative and make your own fun. The warmer weather will be back before you know it.

hero

You are an MS hero

I’m not ashamed of my story. I’m not ashamed of the life I live. I’m not ashamed of my problems, struggles and hard times. I wasn’t before I had Multiple Sclerosis and I’m not now.

We live in a world filled with people who pretend their life is full of only sweetness and that problems simply don’t exist in their world. They think that denying all pain and problems is what a positive attitude is all about…but it’s not. There’s a difference in smiling through the pain when faced with difficulties and in hiding the fact that you’re hurting simply because you can’t bear someone knowing that your life isn’t perfect or that you need help.

We have this inner desire to be accepted and liked by others but don’t hide the realness of who you are just to fit in. That kind of “fitting in” will fade away and you will be left wondering where the people went as time passes. True friends accept you for you…warts and all.

There are times I might share some TMI (too much information) moments…and I’m okay with that. If I want to tell a poop story, I do. I’ve told neighbors, strangers, bosses, friends and family some crazy TMI moments when asked how I’m doing or what’s going on in my life. Sometimes the stories come tumbling out of my mouth before I even realize what I’m saying, but I’ve never been one to hide how I feel or what’s going on in my life.

Why do I do that? Because if I don’t share the reality of MS with others or talk about the struggle I’m going through, how will they ever learn or even know when I need a hug, some encouragement or help? They aren’t going to learn about MS by watching a movie or going out to eat with friends. Most won’t even look things up for themselves online (no matter how inaccurate the information may be) unless it affects them personally. They learn by asking questions and by watching us as we deal with our daily struggles with MS. Our lives are a walking billboard and we get to choose the message on display.

It can be a message of denial and pretending to be okay, but people will never learn anything if you cover up your needs and pains. Asking for help, sharing your problems, opening up your heart, talking about the difficulties…that’s what’s needed to get the message out. Not in a complaining, “woe is me” kind of way but in an “I’m in a lot of pain today and having trouble thinking, can you help me get a few things at the store” kind of way.

You can’t be ashamed of your life or of the fact that you are living with MS. Embrace the person that you are and use your life as a living example of how a person can rise up in the struggle. It’s okay to have a melt down. It’s okay to fall apart. It’s okay to have a bad day. Real heroes do. And you are a hero. Don’t hide your cape under a boring t-shirt. Wear it proudly and rise up to become the warrior you were meant to be.