How do you live with MS? You just do it!

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You have been through so much lately. You’ve crossed hurdle after hurdle going from one doctor’s appointment to the next. You’ve made your way through danger more than once in the past year alone. You’ve climbed mountains that no one even thought were scalable and yet you overcame the odds. Every day seems to present itself with challenges, but somehow you find a way to get through them.

Admittedly, you don’t always win. You don’t always cross the finish line at the end of the day, but the most important thing is that you never quit. Sometimes you find yourself questioning everything happening in your life. Sometimes the dreaded questions “why me?” and “why now?” run through your thoughts but they never seem to come with definable answers, only more questions.

What do you do when faced with a life of multiple sclerosis? Where do you go from here once diagnosed? How are you supposed to function in an able-bodied world that doesn’t seem to understand the complexities of living with MS?

The answer…you just do it!

You drag yourself out of bed each morning exhausted, weary, overwhelmed, and at times feeling completely defeated, but you make your way through the struggle in your day anyway. Some days are better than others. Some days you can walk, other days you can’t. Some days you find yourself laughing, other days even a giggle seems impossible. But you do it anyway.

Today may be one of those impossible, unimaginably difficult days. I won’t lie to you, regardless of what complications MS has given you, a life with MS is hard. There are surprises around every corner; some good, some bad.

Sadly, a majority of the awareness campaigns for MS don’t actually tell the world how ugly MS can be. They show the smiles and the brave souls walking their way through a 5k trek with their arms raised in victory, but what about those who can’t walk? Or the ones that have trouble speaking, breathing, eating, seeing or functioning in a so called “normal” world? Why are those people never seen or shown as the face of MS?

Yes, there have been great strides made in helping people manage their MS symptoms and new treatments are being discovered that help slow its progression down. For that I’m enormously thankful. But when is the public going to see that MS isn’t just an “Oh, well it could be worse” kind of disease? When are they going to be shown the reality of what it actually does to a person’s life and body?

My hope is that some day soon people will see the reason we fight so hard every day, but also the pain we endure. That they will understand just how much we overcome on a daily basis. That we may put on a brave face, but deep inside we carry around an uncertainty of how long we will be able to wear our brave.

Every person fighting MS is brave, every one is amazingly strong, and every one is on a journey of uncertainty. We hope for a better tomorrow but we also hope for a world that will truly see MS for what it really is…a chronic progressive disabling neurological disease that has no known cure.

It’s time we let the public see the ugly side of MS and why we so desperately need a cure.

When did society stop caring for the sick?

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My biggest pet peeve is people who say one thing and then either do the exact opposite or nothing at all and prove themself to be untrustworthy. I’m finding it harder and harder to believe people will do what they say they will do…unless they are getting a paycheck in return (and even then they are not always trustworthy).

It’s sad really. As my health declines, my circle of friends have decreased with it. It seems that happens to everyone I talk to when it comes to living with a chronic illness. It’s easy to commit to helping someone for a month or two, but anything longer than that you become a burden to them and they find other things to take up their time.

When did society stop caring for the sick? It’s easy for someone to post a status online saying how much they care about others or share a cute picture of cats as well as ones of a beautiful flower garden to say they care, but to actually get their hands dirty and physically do something is waining. You just don’t see that happening much anymore.

People seem to want the recognition by the masses. They want the press coverage and plaques of achievement hanging on their wall to show off their accomplishments and prove that they care for others. I’m just sitting here at home needing my trash taken out and can offer a hug in return. Not much. But a hug will last much longer than any 15 minutes of fame. After all, a hug is eternal.

I am pretty good at faking being okay for a few hours if someone were to stop by to visit or I needed to go to the store. Make-up and hairspray does wonders. But come live with me for just a day and you will see how tough life with MS actually is.

Don’t just assume because I’m silent, that I’m okay. Most of the time I get tired of always asking people for help and getting excuses in return. That’s why I simply quit asking. Sure, you can fault me for that. I should be more persistent in voicing my needs. But the flip side to that is when I am persistent, I get a defensive response that basically becomes an “I’m sorry I can’t help you today, I’m busy” reply.

My advice: Hang onto those that have proven their word time and time again. Shower them with thanks and gratitude as often as you can so they know that their work and help is needed, valued and appreciated. Get creative and come up with a back-up plan for all the other people that disappoint you.

You might think you aren’t hurting enough. That there are people worse off than you and have been through more struggles. You may even think your story isn’t significant enough when you compare it to others and then the thought comes to your mind that people will think you are just seeking attention.

There is no measurement for pain, hurt and loneliness. No matter where you are in your story or what it looks like, it means something. Your pain is important because it’s yours. Your story can help other people continue their stories as well. Yes, all pain is different but there are things that we all share when the darkness comes and we feel hopeless.

At times you may even find yourself in a place where your thoughts fight back at you more viciously than they ever did before. Where you think and feel too much and just want to be numb to it all and left alone. 

I want you to know that you are valued.
You are important.
You exist.
You breathe.
You love.
You fight.
You hurt.
You feel.
And because of everything, because you are here in this world, you matter.

Never let other people’s actions keep you from knowing how amazingly incredible you really are. You truly are an beautiful person and not a burden. You may be living with an incurable, unrelenting, horrible disease, but you are AWESOME!

Laughter puts a bit of sanity in the insane

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When terrible things happen, one of the first things to disappear in the chaos is laughter. Somehow all the smiles and giggles that once filled the day get tossed to the wind and pushed aside giving other things more importance. Things like fear, anger, sadness and worries.

For many people, laughter just doesn’t fit in with all that’s happening in their crazy, mixed up world. I mean, how can anyone laugh when their life is falling apart. It just seems impossible…absurd…oh, so wrong.

After being diagnosed with MS, in my head I had created a nightmare even worse than the one I was living. No one knows how long a difficult time with MS will last and laughter is one of those things that simply makes the steps lighter and easier to make. Once laughter is gone, everything else falls apart so much faster and harder.

I, myself, have been known to laugh through the tears. That’s kind of like those times when it’s raining outside while the sun is still shining. Seems impossible, but it happens.

Laughter is important. It’s needed. It’s what puts that little bit of sanity into the insane. It brings out the rainbows and butterflies, and chases away the clouds.

I can laugh about my weak legs, muscle spasms, inability to remember things, lack of coordination, and bathroom mishaps. Granted, some of those things can be embarrassing and bring me to tears, but I choose to laugh anyway. Laughter has this wonderful ability of helping to lessen the pain.

Laughing doesn’t mean I’m ignoring reality. It doesn’t mean I’m being careless, ignorant or naive. It just means that I am putting down all those weighty, life altering thoughts and moments for awhile in order to rest and build up the strength needed for the upcoming journey.

Never apologize for laughing and don’t ever feel guilty for enjoying life in the midst of the struggle. The person that can enjoy the journey regardless of the potholes, ditches, mud puddles, and pain is a rare breed. Be that rare breed.

Don’t let the things you are facing today take away your ability to laugh. Nothing is impossible with MS, the word itself says it all ‘I’m possible’! Wear a smile through the tears, go against the flow and allow yourself time to laugh, really laugh…and keep on laughing. It does the body good.