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The Loaded Question: ‘How Are You?’

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Last week was a long, hard week. I pushed through pain, frustrations, difficulties, weariness, weakness, emotional stress, financial strain, the unexpected, and loneliness. If I was to list everything I dealt with the list would actually take pages and pages of writing. This one teeny tiny page with a collection of words is only a small speck into my world living with multiple sclerosis.

That’s why it’s so hard to answer someone when they approach me with the question we all hear…”How are you?”

How am I supposed to answer that question? Do I honestly dump all my insides out on the table allowing myself to be vulnerable, exposing all that I am for someone to pick through? Do I share only a small part of the first thing that comes to my mind in hopes I’m not judged for what I say? Do I choose to not share anything personal at all and simply fake a smile as I reply with the age old response “I’m fine?”

And then the questions I ask myself at that very moment: Do they really want to know? Are they asking just because it’s the polite and social thing to do? Do I have time to spend on explanations and justifications when they look at me puzzled due to a lack of understanding? Do I really feel like having to explain myself for the umpteenth time?

It’s amazing how many thoughts run through my mind in those few short seconds between “Hello” and “How are you?”

Many times I am able to quickly evaluate a person’s motives and concern for my wellbeing and I choose wisely. Other times I miss it by a mile. I have found the best response is always an honest one. Sometimes it requires carefully constructed words like…

My lawyer says I don’t have to answer that question.

OR

Living the dream… but half the time it’s a nightmare.

The most frustrating thing about living with a chronic illness is having to answer someone who asks “How are you?” when there is no easy answer to give. Why don’t they ask “Are you okay?”  I would be able to answer that one. Unlike a broken leg, MS is always there. It’s not temporary, there is no known cure, and it changes from day to day and even moment to moment.

I have found that if someone truly wants to know about me and how I’m doing, they will take the time to stop, focus on the moment and actually listen. We need those kind of people in our life, and we need to be those kind of people to others.

Today, I’m fine to most of the world, but to those who really care and want to listen,

  • I’m tired (or more like exhausted),
  • Stressed about decisions needing to be made,
  • A financial mess,
  • Dealing with a lot of pain,
  • and Feeling sad mixed with a little bit of hope.

How do you usually answer ‘How are you?’ when living with MS (or supporting someone who is)? Share in the comments—I’d love to hear your go-to responses.

 

 

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I wake up each morning ready for a nap

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I can remember a time in my life when I would stay awake for days just because I could. I pulled all-nighters at least twice a week for no real reason using the time to spend with friends, hang out at Steak ‘n Shake (the only restaurant in town open all night), and watch reruns of Doctor Who. Life was simple then.

I think sleep is paying me back now for all those hours we missed together. I find myself waking up in the morning ready to take a nap, and then when I do nap, I’m ready for another nap as soon as I get up from that one. It’s a weird and crazy cycle…sleeping to sleep.

As a kid I was always told we needed at least 8 hours of productive sleep. Lately, I’m lucky to get 8 hours productive awake time. I have been known to fall asleep in some of the oddest places too: at the dinner table as my head slowly drops into my plate of food (I haven’t done that in a while though), at the bookstore as I’m chillin’ in my chair skimming through a book, and even on the toilet just doing…well, you know.

My eyes will get heavy and I find myself thinking, “I just need to shut my eyes for a second.” But as soon as they shut I am instantly transported to another world. It’s a wonderful world, a place where multiple sclerosis doesn’t exist and anything can happen. I have been known to fly and have even tiptoed throughout the tulips and danced with leprechauns. One day I actually discovered I could dance better than Michael Jackson. Crazy, huh? Especially since I can’t even walk.

The only strange thing is that I can’t stay in that place for long. That’s why my life has become a continual daily life of nap, nap, nap with no sleep, sleep, sleep. I’ve been visiting there quite a bit lately; this land of nap. Maybe you have too.

And don’t feel bad if you are experiencing the opposite and can’t fall asleep no matter how hard you try. That can be just as miserable, but in a different way. Wow, a life with MS is as unpredictable as the weather. Sleep, no sleep…Ugh!

Just remember to be good to yourself through it all. Yes, you are that important.

I think my bed is calling to me. I can actually hear it humming my favorite song…Zzzzzzz. Me and sleep, sleep and me, we have become the best of friends.

I have lots of “almosts” in my MS life

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Lucy and Linus were talking to their coach, Charlie Brown, at home plate. Kicking the dirt in disgust, Charlie Brown said, “Our team is no good. We have lost every game. There is nothing good about our team!”

“But,” protested Lucy, “Schroder almost hit a home run. And we almost won a couple of games. Once we almost made a double play. Don’t forget that you almost made it to first base before the ball, once.”

“If it’s any consolation, Charlie Brown,” interrupted Linus, “we did lead the league in almosts.”

“Almosts” are part of everyone’s life but living with multiple sclerosis our almosts are a bit different. Some almosts work to our advantage and are even celebrated.

For example, there are times when we almost slip getting out of the shower. Yeah! Or, we almost have an accident while driving our wheelchair… oops. Or, we almost choke while swallowing food, air or saliva… yikes. Or, we almost fall going up the stairs… yes, it can happen.

But sadly I have actually had every one of them happen to me and they can be really scary to deal with. It takes a lot of strength to hang in there when everything around you is going wrong and destroying your hopes and dreams.

Then there are the “might have been” occasions like when we almost walk across a parking lot without needing help but fall instead. Or other might have been occasions when we almost are healed by taking supplements and eating a special healthy diet. You know, the infamous unknown cures that heal every illness on the planet. According to those hacks we should be healed already.

Those things are like almost but not quite occurrences. According to Websters Dictionary, almost means “very near but not quite”.

So, the way I see it the “almosts” and “might have beens” are the same as it never really happened at all. I have a lot of almosts and might have beens in my life with MS but I don’t let that stop me from living life on my own terms. Not according to what other people think it should be but how I choose to live it. How about you?

Creating a balanced MS Life

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I’ve always heard that balance in life is essential. I have a feeling the person who originally penned that thought didn’t have multiple sclerosis. I can no more balance my body on a flat surface than my life on a daily basis. I can’t even balance my check book due to the financial strain of living with a chronic illness. A balanced life with MS sounds more like an oxymoron than a reality.

How do you balance a life that is constantly changing and where the unexpected is more expected than the chance of rain in today’s weather forecast? Each day with MS is an irregular experience filled with obstacles and booby traps. How do you balance a life like that?

I gave up trying to plan my day in advance. Before MS, I was an organized, planned individual with my day planner in hand everywhere I went and a memory like an elephant. I remembered birthdays, holidays, anniversaries, and special occasions. I could remember anything I read, heard or saw. I even earned the nickname “Human Google” and was the go-to person when someone had a question.

Now, I have a hard time remembering what day it is, what I did yesterday and what the name of the main characters are in ‘Friends’. I burn pizza in the oven, lose my way driving to the grocery store and forget to wash the shampoo out of my hair while I’m in the shower. You have no idea how many times I have gotten out of the shower, dried myself off, then realized my hair was still sudsy. Even my no-fail plans to remember things don’t help me remember. I lose post-it notes, forget to set alarms and can’t comprehend my own text messages to myself.

It would be wonderful to know what a day will be like: to plan and be able to keep those plans, to go to parties without leaving early, to spend time with friends without falling asleep on them, to spring clean the house without regretting it later, or even to wash and detail the car without dropping the wash rag every few minutes.

Even though I have trouble doing some of the simplest of things in life, I try to do them anyway…and that’s what counts. I try to do as much as I can when I can and leave the rest to tomorrow.

Because of MS, I have learned that balance has nothing to do with ensuring equal time with work, fun, and family. It’s not about pleasing others or how much I can get done in a day. It’s about going with the flow and doing those things that are important to my wellness. Sometimes that means I spend the day focused on my own needs instead of work, family or fun. Sometimes that means I can mix it all up. But the important thing is to never give up when the unexpected happens.

It’s okay to end your day differently than you expected, leaving things still to be done. Don’t get frustrated because your house needs to be vacuumed and you don’t have the energy to do it at the moment. I don’t know of anyone with an un-vacuumed house that has stopped the world from existing thus ending civilization as we know it. Your day will go on and the vacuuming can wait for another day. The same goes for laundry.

Choose the important things in life to be your focus rather than the things of little importance. I’ve learned that many of the things that I thought were important really weren’t. Use your time wisely and know that YOU are what’s important, not what you can or cannot do.

And never forget, even the greatest gymnast in the world falls off the balance beam from time to time so don’t stress out when your emotions get the best of you and you become overwhelmed with everything happening around you. Just take a deep breath, get back up and keep trying. Don’t hold onto the stress that comes with all the daily unexpected moments. Instead, hold onto the smiles you find in the moment and keep going. You got this!

MS is a disease of change

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Have you ever needed to talk to someone yet you were scared stiff to do it because deep down you knew it was not going to go well? To prepare yourself, you planned out what you were going to say. You chose your words wisely and sounded so eloquent in your head. You even planned out their response. Everything seemed perfect.

When the time came, you sat down with them only to realize that things weren’t going as planned. They didn’t follow the script you laid out in your head. We’ve all had those moments. In most cases we can look back at those times and smile because, in the end, things worked out just not the way we thought they would.

Life has a way of doing that. It doesn’t go as planned no matter how hard we try to force it to. And sometimes we try really hard.

Before multiple sclerosis, I had my life all planned out. My career was set. My goals were laid out. I was going places and doing things. Then MS came along and changed everything around.

I think about it kind of like this…

There’s a comfort knowing that I can park my car in a certain spot every day; that if I open the top drawer in my bathroom cabinet I will find the toothpaste neatly tucked away; that when I go to the grocery store the tomatoes are to the right and the napkins are to the left.

But what would happen if I pulled into my driveway and couldn’t get into the garage because the garage door wouldn’t open; or I opened the drawer in the bathroom cabinet and the toothpaste exploded splattering all over my new dress; or if the grocery store decided to move everything around and change the entire floor plan?

What would happen? Frustrations would be high and schedules would get delayed. Now if those things were to happen all at once and then change every single day into the future, well that’s a life with MS and not something you ever get used to.

MS is a disease of change and that much unexpected change can be hard.

When things don’t happen the way you think they should, don’t let that ruin your day. When change is the only thing constant in your life, don’t allow frustration to rule the day.

MS has this way of switching things up on you without warning. Because of that, it’s important to sort through everything going on and choose to focus on the things that really matter in life.

Focus on family, friends, your faith, things that give you peace and happiness, and leave behind everything else that really, in the long run, doesn’t matter. Live in the moment. This way, when change comes (because we all know it will), you will be able to move right through it and keep going.

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.