Oh, it can’t be that bad

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These past few months for me have been terribly difficult. I think I have experienced every emotion imaginable. I have cried more than usual, lost my temper for seemingly stupid and even unknown reasons, and become more withdrawn than I ever thought possible simply because my body and brain won’t cooperate.

I can literally feel the changes happening in my life, so much so that if I allow my thoughts to linger on my increasing weakness and struggles, it scares the crap out of me. (That’s just me being honest.)

It’s hard to talk with people about those fears and the crazy emotions I deal with mainly because, 9 times out of 10, I am met with “Oh, it can’t be that bad” or “You just need to think more positively.” I find it to be exhausting trying to explain progressive MS to people who aren’t willing to actually listen.

Here are a few things I wish more people would try harder to understand about life with multiple sclerosis:

1. There is no cure

No matter what you read online or hear people say, there’s nothing that has been proven to eradicate the disease from a person’s body aside from a miracle. There are symptom management techniques through supplements and diet and medications that work to slow the progression down, but that’s not a cure.

2. My symptoms are unpredictable

One minute I may be doing well managing the pain, weakness, sluggish thought processes, and vision difficulties. The next minute I may need to climb into bed and be unable to move for hours. I am not being lazy. I’m taking the rest my body needs in order to function. You have to remember, it’s fighting every second of every day just to survive.

3. Things will get worse

I know you think that’s not being positive enough, but no amount of not talking about the truth will help others (or even myself) come to terms with my reality. MS is progressive. That means that as time passes, symptoms will build and my life will become more difficult. I need to prepare for the possibilities of tough times so I’m not caught off guard when they happen. Help me to not allow my difficulties to be the only thing I focus on, but allow me the space needed to face the truth.

4. I need help

Just because I don’t ask for help every time I do something doesn’t mean I don’t need it. From my perspective, I see the burden I have become on others and know that in the future it will be an even greater need. I also know that I can’t give back like I could in times past. Those thoughts weight heavy on me at times. Regardless, never stop asking if you can help. Just the asking makes each day better because it shows me you care.

5. Please invite me

I know I am limited in the places I can go because I have to ensure accessibility and that it’s not too late or I’m not too tired, but please don’t decide for me if I can join you for a time out of the house. You may hear no more times than yes, but I feel included when you ask.

6. Little things matter

I know it may sound silly, but a text asking how I’m doing or just to say “thinking of you” makes any day brighter. So does picking up the mail, dropping off a meal, doing a load of laundry, taking out the trash or just sitting for a chat. Those things matter more than you will ever know.

7. Don’t get offended

I have a brain that can’t keep information in order. If I don’t remember a special date, have trouble putting words together into coherent sentences or I’m not engaged in a conversation, don’t hold it against me. Most of the time it’s difficult to keep things organized in my head. Even with lots of notes and reminders I confuse things.

Find your happy

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I was awakened this morning by a bird singing outside my window. Did I say singing? I meant loudly squawking at 4:00 AM without any pauses for air. What in the world is a bird doing up so early in the morning? Are worms even up yet? I think the worms are still asleep, which means this early bird isn’t going to get a worm for a few more hours. It would be nice if he would just go back to bed and let me sleep a little while longer.

What is he so cheerful about anyway? It’s not like he won the lottery or something and needed to let the world know about it. Whatever the reason, he woke up with a song in his heart and he is making sure everyone knows about it.

I had a friend like that. When she woke up in the mornings, she didn’t pause to collect her thoughts or to plan out her day, she was just immediately awake and cheery. It was super annoying too. I don’t wake up well to someone singing,

“Wake up, wake up you sleepy head
Get up, get out of your bed
Cheer up, cheer up the sun is red
Live, love, laugh and be happy”

I would think, “Yeah, you’re going to live, love, laugh and be happy when I whack you upside the head with this toaster.” But you know, I never did hit her with the toaster. I always made it through the morning, and so did the toaster.

I did notice that the song she would be singing, I would eventually be singing too. It wouldn’t happen right away, but eventually I would be eating my cereal and catch myself tapping my foot and humming along. Then, as I would be getting ready for my day, a song would come out. Before you knew it, I would be belting out a song from a movie or singing along with the radio. It’s kind of like when you hear a song in a commercial and you find yourself singing that tune everywhere you go because it somehow got stuck in your head.

Cheerful people can be super annoying in the wee hours of the morning, but you know, no matter how annoying they are, we could learn a lot from someone who wakes up with an instant song in their heart. The world could be crashing in all around us, storms could be blowing, tsunamis could be washing everything away, flood waters could be rising, yet there’s still a song to sing. No one or nothing can take your song away, not even multiple sclerosis. That’s something you own. You and you alone.

So this morning, find your song and sing it. If you need to collect your thoughts first like I do, that’s okay. Take the time you need to wake up fully, but once you are up and at em’, sing…sing your song with all your heart. Cut loose and let out the song that’s hiding deep inside you. And if you can’t find your song today, that’s okay too. Get around someone with a song to share. Before you know it, you will be singing it too. You might even find yourself dancing a step or two. Find your happy!

Multiple sclerosis is not a death sentence

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I think we all go through a stage at the beginning of being diagnosed with multiple sclerosis where we think life as we know it has ended. I used to tell people that MS is just two letters in the alphabet, it’s not a sentence! Sounds good to say but when you get a closer look at it by living with it, that kind of thinking changes.

As time went on I thought of it as more of a death sentence than simply 2 letters because it seemed to be the death of everything I knew. My mobility, my ability to feel and function in a regular capacity, the decline in my cognitive function, just so many changes to my bodily usage had decreased and caused me tremendous difficulties. So much so that I felt less human than anything else.

And with my bodies ability becoming so much worse it was more of a death sentence to me than anything else… yet when looking at all that I have endured I don’t see it as a death sentence at all. It more of a faster path to death but not a sentence. Life still happens and there are still moments of happiness and joy in the process.

You can be happy, even in a “broken” body. It may not seem like it now, but the truth is that you can build a happy, meaningful life for yourself, even if you’re never able to walk, hear, or even see like you used to.

It goes without saying that your disability has already changed your life in big ways. But with commitment, creativity, and a willingness to do things differently, you can reduce the impact your disability has on your life.

While you can’t go back in time to a healthier you or wish away your limitations, you can change the way you think about and cope with your disability. You are still in control of your life and there are many ways to improve your independence, sense of empowerment, and outlook. No matter your disability, it’s entirely possible to overcome the challenges you face and enjoy a full—and fulfilling—life.

Don’t let MS control you, you be the one in control. You’ve got this!