When the wind blows

I went outside yesterday and was almost blown over by the wind. I had a hard time fighting through it just getting to my van. It was blowing so hard that I thought I might float away. That actually happened to me once. Not the floating away part, but I felt like Mary Poppins when the wind lifted me off the ground.

I was eight years old and a hurricane was heading our way. I had one of those clear umbrellas shaped somewhat like an upside-down bowl so you were protected from the rain a little more. They were almost impossible for the wind to flip inside out.

School had let out early and as I was walking to the bus when a giant gust of wind hit me so hard that it filled the inside of my umbrella and lifted me off the ground. It felt like I was lifted a million miles into the air but in actuality it was more like 4 or 5 inches. For that short moment I could fly. It was scary and exciting all at the same time.

Some days Multiple Sclerosis comes along and hits me like that kind of wind. It hits so hard that everything becomes a struggle and I find myself fighting just to move forward. Sometimes it knocks me down, bowls me over and sends me sailing through the air into every wall and piece of furniture in my house.

Yesterday was that kind of day for me. I sat on the couch looking around at all the things that needed to get done but my body wouldn’t let me do any of them. My legs wouldn’t cooperate, my hands decided to rebel and my strength was nonexistent. Those kind of days can be depressing. You feel so useless and helpless.

Do you know what I did? I decided vacuuming wasn’t that important. Neither was the laundry, cleaning the kitchen or running the few errands I needed to run. The world wasn’t going to fall apart if those things didn’t get done so I made myself comfortable on the couch with my coloring book, TV remote and of course my comforting cup of coffee and I rested. No guilt. No shame. Okay, a little at first, but I kept telling myself that it’s okay and enjoy the moment regardless of the circumstance.

One thing MS has taught me is to set my sail and ride the wind that comes with each new day. I may not officially fly away when the strong gusts of wind come from out of nowhere or the torrential rains pour, but I’m not going to let MS keep me from enjoying my day regardless of what I’m facing. When the winds of MS shift (which can happen multiple times in one day), I have learned the importance of shifting with them.

The wind will blow in life whether it’s because of MS or any number of problems…and when that wind blows, you have to learn to stop fighting the current and simply let go. Let go of the anger, hopelessness, frustrations, and fears. Let go of the past and the defeating thoughts that run through your head because things just didn’t work out as planned. Let go of having to be in control of everything.

You can soar through the storm…you just need to let go.

clock

Is it morning already?

Have you ever had one of those days when you woke up feeling so bad that you wished the day could just be canceled? That an announcement could be made over the radio…”Today has been canceled due to too many broken nerve signals. It looks like a bad one out there. Stay home and bundled up. We’ll keep you posted on any changes.”

That’s my day already and it’s only just begun. I’m lying here in my bed as I write and dreading the simple act of getting up to do anything productive. I already made my way to the kitchen earlier for my morning wake up juice and know how much of a challenge that was. At least my wheelchair battery was charged and the coffee was set on an automatic timer so there was already a hot brew waiting.

I would really like to just to stay here in my bed surrounded by these fluffy pillows and fuzzy blankets. Can someone just bring the day to me instead? That would be nice, wouldn’t it? But as we know, life doesn’t work that way.

We have to get up and meet our day face to face, eyeball to eyeball. It would be amazing to be able to punch one of those eyeballs with a good strong right hook, but no matter how much I want the day to come to me or simply stop altogether, I know I have to find the strength to get up and get things going.

Don’t let the fact that you feel bad dictate your day. Get up, get dressed, and get your day started. Sometimes, that’s the biggest challenge of the day anyway…getting up. Maybe that’s why I dread it so much. I know that normally once I’m up and going, I’m doing better. It’s just trying to convince my body of that fact can be the difficult part. Am I the only one that feels this way? I sure hope not.

Regardless of how you are feeling right now, at this very moment, today belongs to you. Do the things that need to get done and leave the rest for another day. No guilt and no remorse for slowed progress.

I believe in you and know that you can muster up the needed strength to keep going. Don’t quit before you’ve even gotten started. I know you can do whatever it is you need to do today. You got this!

You are not alone

A life with Multiple Sclerosis can be a physically challenging, emotionally draining, round-the-clock exhausting and lonely job. Everything we do takes an extraordinary amount of effort to complete and some things become nearly impossible to do causing us to get really creative in finding an alternative to our otherwise normal way of doing things.

I want you to know that no matter what you are facing today or how difficult things become tomorrow…you are not alone! There’s an army of us warriors standing shoulder to shoulder, together in this fight.

If you cried in the shower this morning because you were so unbelievably overwhelmed with the load you have to carry and feel as if the whole world has flipped upside down, inside-out and turned up on its end…you are not alone. Somebody else cried, too.

If you find yourself staring at piles of laundry, a sink full of dishes, shoes tossed in the hallway, unmade beds, dirty toilets and are fighting the guilt of the day coming to an end with everything still in the same place it was when you woke up…and then you find yourself wondering “what did I do today?”…you are not alone. Somebody else wondered, too.

If you miss running with your kids, attending graduation parties and baby showers, standing in long lines waiting for tickets to the best show on earth, and joining in on all the fun everyone else seems to be enjoying…you are not alone. Somebody else misses it, too.

If you woke up exhausted after a full night of rest and are trudging through your day longing to go back to bed so you can sleep just a little bit longer…you are not alone. Somebody else did, too.

If you wished you could still be part of the buzz around an office, the business of deadlines and bad morning coffee, cranky bosses, nosey employees and water cooler gossip…you are not alone. Somebody else wished, too.

Maybe not every person’s experiences with MS are the same and the difficulties you face are different from mine, but I am convinced there is someone, somewhere in the world who is going through the same overwhelming moments as you. Just because you don’t hear about them or know them personally, doesn’t mean they don’t exist.

Keep hanging on. It’s okay to feel like you’re falling apart because in many ways you are…well, your nerves are so I guess that’s the same thing since they are a part of you. Eventually things will get better and you will find ways of coping with all the changes. I can guarantee you that.

Right now the days may seem long and the pain may outweigh the joys. It’s tough…I get it, but it’s not impossible. Let’s carry this burden together. Let’s offer a listening ear, a gentle hug or a nod of understanding to those beside us. We need each other. That’s how our strength grows.

Real friends

True friends are a rare thing for the chronically ill

Life was good before Multiple Sclerosis. I had great friends. We would spend time together on the weekends going out to eat or bowling, and in the summer we would always plan hiking trips through the mountains. When MS became a part of the picture, those nights out and trips dwindled. It got to where I wasn’t even being invited to dinner anymore, they would just go without me. It made me downright mad to be excluded like that. I wanted to scream at them saying, “I have MS, I didn’t die.”

Amazingly, you discover who your real friends are once a challenge arises. They will either stand by you and hold you up or they will walk away dropping you like a hot potato. If they choose to walk away, let them. You don’t need anyone pulling you down. MS is doing a good enough job of that already.

For those friends wanting to understand a little more about how life changes for a person with MS, I’ve listed a few things here. Maybe they will help you to understand MS and help you to be a better friend in the process.

1. Sleep is important to us.

We need to go to bed early. When I say need, I mean NEED, and when I say early, I mean EARLY! Our bodies wear out faster because they are working harder to do just about everything. The simple act of walking across a room exerts twice the energy of a healthy person doing the same thing, if not more. We have to think to walk. It doesn’t come naturally like it does for you. Every step includes a thought process about how to pick up the foot and where to put it back down. Now, add to that all the other things you do in a day. Many times we will be in the bed before the sun goes down, which means we may not be able to have a night out with the gang or stay up to watch a late night movie on the couch. When we do sleep, the time is sporadic which makes us even more exhausted the next day. Sleeping through the night without bathroom breaks and being awaked by pain is a rarity. So, if we say we’re tired, we are “I haven’t slept in days and every muscle, bone and cell in my body aches” tired.

2. Schedules are planned around treatment and sleep.

No longer are we able to plan ahead for a special event. Our meds and sleep patterns changed that the moment MS became a part of our life. If we are out enjoying the night and have to leave early, don’t get mad or think we are being unsocial for being the first person to slip out unnoticed. When our bodies are screaming at us in pain, and our exhaustion has hit an all time high, we would rather be at home in the comfort of our PJs so we can hibernate on our own couch. This way, if we have a moment when things get too intense and we shed a tear or two, we don’t have to explain what’s wrong for the hundredth time. Just know that if we ever say “no” or have to cancel last minute plans, it’s not because we don’t want to be a part of what’s going on or because we are mad at you. Our bodies just won’t let us join in.

3. “Just come over and sit” is not as easy as it sounds.

For one, we have to get ourselves dressed and make ourselves presentable which exerts energy. Then we have to drive through traffic to get to your house which can be dangerous, especially if we have trouble with vision, numbness in our legs, dizziness or fatigue. So, although coming and just sitting at your house sounds simple, it’s not. It becomes even more difficult when we have to leave and drive back home, because by that time we are so tired that driving can be scary and unsafe. It would be so much easier if you were to come to us. And not a loud party kind of come over either. There is a time and place for that, but most of the time we just want to know you care. Having a cup of coffee or tea for an hour or bringing lunch over would be welcomed and help brighten our day.

4. Simple things suddenly become difficult.

Laundry, cleaning, cooking, washing the car, vacuuming, making the bed, going to the store: they all sounds like simple things, right? But they’re not. All of a sudden we find ourselves struggling just to make the bed in the morning. What normally would take 10 minutes becomes 45 minutes. Our energy gets used up fast and our muscles weaken quick. All those things normal people do, we struggle with. We look around the house and want to cry because we have had to neglect things we normally would take care of. You know what would be the greatest thing of all? For you to volunteer to come and help us tackle the laundry or the scrubbing of the toilet.

5. We get tired of explaining the same thing over and over.

We understand that you don’t get it and that much of our pain you can’t see. We realize you can forget from time to time that we are hurting and suffering on the inside. But please, as a friend who wants to be a part of our lives, take the time to read up on MS so you can be informed. Be our biggest supporter: the person that stands up for us and fights for us when others point and stare or are saying stupid things and being rude. Hold our hand through the bad days and help us find our smile when we lose it.

6. Don’t judge us for our choice of treatment.

We are the ones living with MS and, surprisingly enough, we have researched more in depth about MS than most people because again, we are the ones living with it. We would like nothing more than to one day wake up and hear that MS is cured. Until then, we have decisions to make about a treatment plan. Those decisions are ours to make, not yours. Please don’t judge our decisions. Treatments are a trial and error kind of thing. They won’t cure us. They just delay the progression. Let us try what we feel is right for us, and if it doesn’t work, help us to make the next big decision for treatment. Leave the judgements and finger pointing elsewhere. We don’t need condemnation or criticism. We need support and care.

When it comes to friendships, we need them, we want them, we long for them, but we won’t be able to be the friend you have known in the past and we need you to be okay with that. MS has caused our lives to change. We would love it if you would help us through that change by changing with us. We know it’s not easy. Boy, do we know it’s not easy. But know that living with MS isn’t easy either.

True friends are a rare thing for the chronically ill. It takes guts to stand with us. Thanks for having the guts to stay.

How are you?

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 collection of words is only a small speck into my world.

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 suppose 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…

It’s a dog eat dog world out there and I’m wearing Milkbone underwear.

OR

Well, I haven’t had my morning coffee yet and no one has gotten hurt, so I’d say pretty good at this point.

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. Unlike a broken bone, Multiple Sclerosis 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 are you?

I wish Multiple Sclerosis was no more

One day Multiple Sclerosis will be no more. It will not be able to cause pain, fatigue, weakness, and those crazy frozen brain moments. It will no longer have the opportunity of harassing or hurting another person in the world. Its attempts to cause any kind of harm will be foiled.

I wish that day was today, but when I woke up this morning MS was still here. It appears my dream hasn’t come true as of yet, but that doesn’t mean there’s not hope for tomorrow. Whether you believe me or not, anything is possible tomorrow and I will never stop believing for great things to happen…for you and for me.

Today as I wait, I choose to live life in the moment. I discovered when I live that way, I am able to put my fears and worries to the side because I find more joy focusing on things that truly matter. You know, things like family, friends, chocolate, and coffee. Yes, lots and lots of coffee.

My greatest desire is for years from now, people will look down the road I took in life and wonder what it was that made me so strong. I want them to see something in me that leaves them in awe scratching their heads.

And when they ask what was it that gave me such strength, the resounding answer will be “She had Multiple Sclerosis and never gave it rights to her heart. She lived and loved life regardless of the struggle.” And I want them to be able to carry that same strength with them everywhere they go.

I want that for you too. Today, you have the strength to face this very moment no matter if you are in the hospital hooked up to noisy monitors, busy nurses and meds galore or if you are stuck in traffic with a twitch in your leg that makes you drive more like a drunk driver than a respectable citizen.

You are amazing. Never believe anything different. All those negative focused thoughts that have a tendency to make their way into your head…they are lies. All lies. You are strong. So much stronger than you give yourself credit for. Enjoy the little moments that make up today. Find something that gives you joy and do it. Today is your day, now LIVE!!!

Yes, I live with Multiple Sclerosis and still smile

Life really is what you make it. I know that sounds so cliche, but it’s true. You have the chance to turn a bad thing around into something good. How? By changing your focus. If you spend your time constantly looking at the bad things happening around you, you will end up missing those small yet amazingly great things that happen every day. Things like…

a caring hug from a friend
a funny comment from your child
a laugh
a smile
air-conditioning on a hot day
peace and quiet for 5 minutes in a busy home
take-out
an unexpected letter of thanks
a cloud shaped like a bear
an empty laundry basket
a day without falls
a nap…or two
chocolate
a parking spot right in front
a holiday
the perfect pancake
the smell of fresh cut grass
a rainbow
a new book
a forgotten ten dollar bill in your pocket
music

So many things…every day…things that we take for granted, yet have the potential to make our day less painful and possibly even come with a laugh or a giggle.

Stop and look around you. Even today, with all you have happening, it’s a good day. I know it’s not easy, but try not to look at the struggle. I understand that living with Multiple Sclerosis has its problems. They are real and they hurt. I’m not saying you should pretend they don’t exist. I’m just saying change what you are looking at.

If you spend your time focused on the pain in your life, the pain will be what grows. At times it can become bigger than life itself. Yet if you shift your focus to those little surprises in your day…those wonderful smiles that are handed to you…you will discover the pain will begin to lessen.

The struggles, disappointments and pain won’t go away entirely, but they will no longer be so overwhelming. The more you search for the good, the more you will find it and the easier your day will be to get through. Try it. You just might be surprised at what you find.

Multiple Sclerosis is unpredictable

It’s hard to predict the weather. I will go to weather websites to see what the forecast will be for the day and even they can get it wrong. Sometimes it will say it’s going to rain and the entire day ends up filled with sunshine while other times sunshine is predicted and it rains all day.

I can no more predict the weather than I can predict how Multiple Sclerosis is going to behave for the day. One day I may wake up mobile and tired yet ready to tackle anything that comes my way. Then the next day I find myself unable to move at a speed faster than a snail walking through a dollop of peanut butter.

It’s almost as if at some point in the middle of the night all my nerves get together to strategize on ways to trip me up. Sometimes it’s weakness, other times it’s pain. I can be hit with fatigue, dizziness, bathroom mishaps, and double vision all at the same time too. Some symptoms are a constant while others come and go at their leisure.

Because of that, it makes it hard to plan for the day. That happens with the weather, doesn’t it?! Many times you don’t know if you will need an umbrella, snow boots, wind jacket or sunglasses. With MS you don’t know if you will need your walking cane, leg brace, wheelchair or scooter. Without fail I end up picking the wrong thing. It happens all the time.

Before I ended up in my wheelchair full-time, I was known to pick using my cane throughout the day because I was feeling okay, but by the end of the day I would have much rather had my walker with me instead. Or I would choose to go without my leg braces and regret that decision when I would end up having to walk across the parking lot at the grocery store. Such unpredictable behavior.

Sometimes my strength surprises me and I’m strong enough to open a jar of pickles with a few handy taps to the lid and a rubber grippy thingy to help me turn it, other times weakness takes over and even easy to open packages require a sledgehammer, blowtorch and a weed whacker.

No matter what MS is behaving like for you today, set your face to the wind, your eyes to the skies and don’t stop. You can make it through rain, shine, sleet or snow. Strap on your gear and step out the front door. It looks like sunny skies today…or is it rain? No, maybe it’s snow. Oh, just get out there and take things one step at a time.

Multiple Sclerosis and the mountain in front of me

I have never climbed Mount Everest but it seems like every day I scale its twin. Somehow this twin of a mountain is in front of me as soon as I open my eyes to start the day. As the morning begins I am faced with a new climb in my journey with Multiple Sclerosis, sometimes even before I pull back the covers.

One day I may be staring at a gigantic wall of rock that seems impossible to scale and the next day my path may be a gently sloping hill of grass. I never know what part of the climb I will be facing until it is there in front of me. If I had my choice, I would pick the gently sloping hills every time. They make it much easier when I fall down. Those rocks hurt.

But no matter what I am facing, the thing I keep reminding myself with each forward motion I take is to never give up…even if I am on unsteady, shifting rocks. A life with MS isn’t easy no matter what you are dealing with, but at the end of the day I lay my head down on my pillow knowing that I did the best I could. That’s what really matters anyway, doing your best.

If you are facing an overwhelming pile of work that needs to get done before the end of the day or are weary from the difficulties life has handed you, take a moment to pause in your climb. When your emotions are going bonkers, the pain becomes too much, your blurred vision is limiting your view…pause. When nothing seems to be going right and your hope of a better tomorrow seems to be fading fast…pause.

It doesn’t have to be a long pause, just enough time to catch your breath. No matter what you may think, pausing doesn’t mean you are giving up. It actually helps to give you the strength needed to keep going. Pause, but don’t quit.

When I am having a really hard time, I pause and watch this clip from the movie “Facing the Giants.” It reminds me that I really do have the strength within me to keep climbing, to keep going. I hope it gives you the added strength you need today too.

Time for change

In 2014, when I started Positive Living with MS, I committed to writing a blog post every day. I never imagined it would become so popular. Even today I am amazed at how far and wide my readership has become. My multiple sclerosis progression was minimal at that time and I had the energy necessary to write daily sharing my encouragement, humor and daily life with everyone.

As time passed I changed the daily blog posting to 3 times a week ensuring that I was still helping others to navigate this crazy terrain we find ourselves in but giving me time to focus on myself as well.

Now, here we are in 2017 and I am finding that 3 times a week is a bit too much for me to manage. I am still committed to sharing my life, my heart and my struggles with everyone because I know that what I have to share is helpful not only to the MS world but to caregivers, family and friends of people living with MS as well.

Only now I am changing up my commitment yet again, this time I have made the decision to blog twice a week…every Tuesday and Thursday. I will still post my silly statuses to Facebook and you can always go back and read past blog posts.

I want you to know that it’s because of you that I get up each morning and smile. I am so thankful for your support online and for the courage you carry in your heart as you go throughout your day. You are the true warriors. Never forget that.