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sleepy

Sleep? What’s that?

I can’t tell you what a good night of sleep feels like because I don’t remember the last time I had one. Most nights I either toss and turn due to insomnia, continually wake up because the pain is relentless, or I actually sleep for hours yet still have the ability to wake up without getting any sleep. The kind of tired I feel on a daily basis just can’t be explained in a simple word: exhausted, ready to drop, fatigued, sleepy, run-down, pooped, worn out…nope, they just don’t explain my kind of tired.

The description I have of Multiple Sclerosis fatigue is the way someone feels after they’ve not slept in two days straight and then hiked 50 miles up the side of a mountain while carrying a backpack loaded with rocks on the hottest day of the year. But who in their right mind is going to attempt that kind of journey to truly understand what my tired feels like? It just doesn’t seem possible to feel tired like that every day. But then again, my body does a lot of things that don’t make sense.

For those that may have forgotten, my body is in rebellion and has turned on itself. That’s what Multiple Sclerosis is. My immune system has become overly charged with super power strength and sees my Central Nervous System as the enemy. It’s an amazing fighter, my immune system, it’s just fighting the wrong thing. It’s attacking what my body needs most to function properly.

And if you should think the Central Nervous System isn’t all that important, I would challenge you to find one thing in life that you can do without it. Our nerves are a part of everything we do from seeing, to walking, to eating, to sleeping, and even to yawning, blinking and sitting still. Have you ever had a pinched nerve in your back, leg or shoulder? Yeah, that didn’t feel so good, did it? Now imagine nerve problems like that which can’t be fixed with an adjustment or a pill because the nerves aren’t simply pinched…they are chewed up, and many times unrepairable. I would love to be able to simply un-pinch my nerves in order to feel better.

I’m yawning as I write this and can feel I need a nap already and I haven’t even gotten out of bed yet. I look forward to the day I wake up and Multiple Sclerosis is no more. That’s my dream…and I’m sticking to it.

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.

This year’s journey with MS

It’s hard to believe another year is almost over. Tonight, a new year begins. As they say “out with the old, in with the new,” right? As I reflect over the year now gone, I realize I have experienced some truly wonderful, beautiful moments. Times that made me sing even though I can no longer carry a tune. Times that gave me great joy and created memories that I will hold on to for the rest of my life.

It has also been a year filled with pain, weariness and sorrow. Those are the times I wish I could forget but know I won’t because those moments are still a part of who I am. If nothing else, they have made me stronger. And trust me, I need all the strength I can get right about now.

Last year at this time, I was in the hospital for an entire month working to regain the use of my legs. And although the rehab was well worth it and the exercises I learned I still do to this day, my legs never returned to their full function. Does that make me sad? Angry? Fearful? Sure. But I’m not going to let my disability stop me from living even if I do it from my chair shaking my trembling fist in the air at MS.

My daily routine is different now. My needs are different. The things I consider important have changed. But me…I’m still me. No amount of ability or disability can change that.

Think back over your year. I’m sure you’ve had both beautiful and terrible moments. Times that make you still smile to this day and others that bring tears to your eyes. That’s called life…and you lived it. You experienced it. And although your experiences have changed how you do certain things, why you do them and when you do them, they haven’t changed the person you are. You are still you.

You may live life differently than you have in times past. You may need additional tools to help you get through your day. You may get tired and weaker faster than before. You may even do everything slower. But you…YOU are not your MS.

You are an amazing, beautiful, lovely, awesome, precious, one-of-a-kind, delightfully unique individual. There is no one else in the entire universe like you. You have so much to offer the world, even with a disability.  Don’t allow MS the satisfaction of stopping you from enjoying life or even from enjoying today.

As this year comes to a close, choose to be thankful for all the beautiful moments you’ve had and to use the terrible times as bricks to fill in the potholes along the way. I can’t promise you that the new year will be wonderful and void of any pain. But I can promise you that together, with each brick we place along the journey, we are building a path that just may ease the burdens of those newly diagnosed that come along behind us.

MS may only leave destruction in its path, but we are leaving a legacy of strength, resilience and beauty. You didn’t know you were doing all that, did you?  Don’t ever underestimate your value and worth. You are priceless and those bricks…well,  they just might be rubies and emeralds!

You are worth it

Sometimes life is a roller coaster, only when it comes to Multiple Sclerosis it can mean that literally. Vertigo is something I’ve fought from the start of diagnosis. Some days having the room spin around, shift up and down, and move on me is manageable. Other days, simply sitting on the couch can trigger an entire tsunami of waves.

The uncertainties of just that one symptom can be a lot to handle. Now add to that all of MS let alone all of life and, well…let’s just say some day I would rather stay in bed hiding under the covers than facing the day. Being overwhelmed every move you make is not something anyone wants. It takes a strong person to face a life with MS. It’s definitely not a disease for wimps.

When you get to the point of feeling as if you are drowning in a sea of symptoms, doctor appointments, tests, changes, meds and even health choices, sit down and take a breath. You have to pause at those times in order to make wise decisions and to keep from going crazy.

Making decisions is exhausting work. It really is. There’s a ton of information to weed through, side effects to consider, lifestyle changes to manage, finances to shuffle, and schedules to maintain. Be sure the decisions you make today about managing your MS is what’s best for you, not just because someone online said so or a friend pressured you into it. You have to think of you and your needs…and the you in the future.

You are the one in charge of your life, not MS, a doctor, your spouse or anyone else. Take the time you need to make informed decisions, then when you’re ready…go for it. So  many times we push ourselves too fast and too hard then find ourselves sitting in a puddle of regrets in the middle of the kitchen floor.

Today, I want to encourage you to pause and reflect on all you are doing in life to be sure it’s what’s best for you. If you need to weed some things out…do it. Quit trying to prove how strong you are. You are already strong so there’s nothing to prove. You are strong even when you feel you are at your weakest, even when all you can do is cry, even when you are overwhelmed with symptoms and a life of change, even when decisions are tough.

Pause today for yourself. You are worth it!

When the walls, floors and furniture attack

I have had a lot of curve balls thrown my way, sometimes snowballs and other times boulders. I think there have even been a few bouncy balls thrown in the mix which account for all the face plants I’ve had with the floor. But the floor and I have an agreement, and as long as I give it a hug every now and then, all is good between us. Continue reading “When the walls, floors and furniture attack” »

wand

I wish I may, I wish I might

I’ve been staring at a blank page with pen in hand for over 30 minutes unsure of what to share this morning. Most days my thoughts tumble onto the page so easily, but this morning my brain seems to have decided to take a vacation. It didn’t even ask for permission. That’s simply not fair. I would have loved to have taken a trip with my brain to Hawaii, or Australia, or Timbuktu. I’ve always wanted to go to Timbuktu. Now, that’s a fun word to say…Tim-buk-tu! That fits right up there with tutu and hullabaloo.

I wish I could wave a magic wand in the air to make our crazy brain fog moments disappear. Or better yet, to make Multiple Sclerosis disappear altogether. Talk about a wonderful day…now, that would be the most amazing day ever. A day worth getting out of bed for and shooting off fireworks followed by a parade, and lots and lots of balloons.

Even though today isn’t that day, it’s still a day worth living. Why? What reason is there for getting out of bed when all you see are difficulties looming, dark clouds forming and flood waters rising?

For me, I flip back the covers and step out of bed each morning because I’m on a mission. I love sharing my life and heart with others, seeing them encouraged and uplifted through my own life experiences. I love making people smile in hopes that they forget, even if just for a moment, that life is hard. I love helping people push through difficult times and seeing their victory dance, even if it’s only a small one.

I get out of bed each morning because I’m on a mission to help a world of MSers find their way through the tough times in hopes that they choose laughter over tears and search for rainbows rather than lightning bolts. What’s your why? Why do you get out of bed each morning? What is it that keeps you going when times get tough?

Find your why and hold onto it. Let it give you the strength you need to face the day. Today may be a difficult day, but I am confident you are going to get through it. You are strong even though your body is weak…stronger than you realize. MS is not going to stop you today. It may be rearing it’s ugly head but you are going to make it.

The unexpected happens

I had an interesting past 4 days. Four days filled with pain, tears, doctors, meds and friends. Four days that shouldn’t have happened, but did. Four days that I’m thankful are over.

As many of you know, I ended up in the Emergency Room at the hospital because of a problem that occurred with my suprapubic catheter. For those unsure of what that is, it’s a tube that is surgically inserted into the bladder just below the belly button and attaches to a urine bag outside your body. The tube, or catheter as it’s called, has to be replaced once a month. I have it because the muscles that control my bladder no longer work properly. MS decided to paralyze them without getting my approval first and now my brain will no longer communicate with my bladder.

Well, my catheter change was done wrong by a nurse that comes to my house and it left me in extreme pain. And I do mean extreme. The urologists office was closed so the ER was my only option for getting help, but the only help they could offer was pain meds to get me through the weekend until I could see the urologist on Monday. That left me the entire weekend in misery.

Unexpected things like that happen in life. I hate it. We all hate it. But they happen. Each day we wake up to challenges and obstacles, and each day we must find the strength to get through them.

Today you may be faced with pain, weakness, uncoordinated legs, brain fog, dizziness, poor eyesight, numb body parts…so many things MS related. But you could also be facing stress on the job or at home, financial problems, relationship difficulties, sickness of a loved one, troubles with your kids…so many personal things that seem impossible to manage.

In the heat of the moment, it’s hard to see anything worth striving for when all you see is pain. Your thoughts are focused on getting through the next 5 minutes. Forget about tomorrow, you just want to make it through today. Sometimes it’s hard to see through the tears.

But just because the end appears to be far away or even impossible to find doesn’t mean it’s not there. I promise you…everything has a beginning and an end. Sometimes the end doesn’t happen the way we want it to, but it always comes and peace is always found. It’s just in those minutes, hours, days, years of going through the difficulties that we seem to get lost, discouraged, and weary.

I want to encourage you today…to let you know that you can do this. Don’t let the “going through” times weigh you down. Sure, MS may knock you down (sometimes literally) and mess with your plans, life may deal you a crappy hand, but don’t let that stop you from living.

You have to rise up with the kind of determination that never quits fighting. Don’t throw your hands up in surrender just because everything gets too hard. Take on the challenge and prove to the world (and to yourself) that you are not going down without a fight. Don’t stop trying, don’t quit, and don’t let MS get the last say in things.

strong

You are stronger than you think

There are so many things that I’m thankful for. I could list the usual: family, friends, warm fuzzy slippers and coffee…but those things seem so shallow to me now. Not because they aren’t important, but because my focus has shifted greatly over the past several years.

This morning, as I sat asking myself why I’m thankful, a flood of thoughts came to my mind. I have seen people faced with terrible circumstances who have become bitter in the process, and I have seen others rise above their challenges and become a light and a source of hope to the world around them. Which am I? Which are you?

As someone living with multiple sclerosis, I can remember the very day I sat in the doctor’s office when he gave me the unwelcomed news that I have MS. I went through a full range of emotions in the weeks that followed from denial, to pain, to anger, to peace. It was a shocking blow to my life and something that I never saw coming. I had plans and MS wasn’t one of them.

It’s been a hard road. I have had to learn to adjust the way I do just about everything because even the simplest of things have become challenging. But I refuse to give up. I refuse to let MS keep me from being thankful…or from living.

The questions that I’ve asked myself even just recently have been simple. If I didn’t have one single family member to stand by me at this time, could I be thankful? If I didn’t have one friend to call on for encouragement, could I be thankful? If I didn’t have my warm fuzzy slippers to bring a feeling of comfort to my body, could I be thankful? And God forbid, if I didn’t have my morning coffee, could I be thankful? I’m sure you could ask your own questions here too.

I have learned to be thankful in all circumstances. To look this disease of MS square in the eyes and say, “I am not defeated because of you. I am thankful for each new day I am given.”

We will never understand all the “why’s” in life.  It’s time to stop questioning why you are going through the storm you are currently facing and determine to be thankful as you go through. You can be thankful even in the most horrible of circumstances, but it’s a choice; and you can make that choice today. You can stand up (even if only on the inside) and say, “I refuse to be defeated by MS.”

For me, I’m thankful for my weakness; I’m thankful for the difficulties…because they show me just how strong I truly am. Sure, I have days when I lose it and break down in a puddle of tears, but I also have days when I can hold it together.  I have learned that strength isn’t measured by the amount of things I can do or how little I cry, it’s determined by the attitude that I have while going through the storms in life.

You are stronger than you think. Square your shoulders back and hold your head up high today because you are STRONG! Find something to be thankful for even in the storm. Have your moment of tears then wipe them away because today is a new day to be thankful for.

armor

Weary warrior still standing

I am not a resilient, non-wavering, always smiling, never hurting person. I have my moments of being overwhelmed and feeling as if Multiple Sclerosis is getting jabs in before I have time to duck. Just because I’m a positive person doesn’t mean I don’t hurt. That seems to be confusing for some people.

The reality is that some mornings I wake up and Multiple Sclerosis is just an inconvenience to my day, but other times it’s a monster that has me in a choke hold and won’t let go. I’m just telling it like it is. We all know it’s true whether we want to admit it or not. No amount of denial or positive thinking will change the devastation MS brings to our lives.

Sure, we do a pretty good job at slapping on a smile and pretending that everything is okay…stuffing our feelings and fears out of sight. But there always comes a day when we simply can’t stuff those things away any more and all our hurts and fears start leaking out.

And that’s okay. It’s okay to have a meltdown from time to time. It’s okay to feel. It’s okay to cry, scream, rant, or vent about MS. Think about it…you are living with a disease that is slowly eating away at your insides. You are going to have tough days.

Denial isn’t the answer to getting through a life with MS. It’s actually not the answer to getting through anything in life. What gets you through is facing the reality of what is happening and choosing to work through every crazy emotion that comes to the surface; every fear, doubt, hurt, pain, and heartbreak.

Where positivity comes in is not in helping you to pretend that MS doesn’t affect you. Positivity helps you to face MS head on by giving you strength to keep going. When you are able to make it through a day of tears yet still find a smile in your day, not because you are hiding from what’s happening but because it’s the only thing pushing you through to tomorrow, that’s the strength I’m talking about. For me, I draw that positivity from my faith. I couldn’t make it through a day without it.

You may feel like you’re falling apart, but I can see hiding in the shadows, a warrior. That warrior is you and you have not been defeated.  Don’t be concerned that your sword is a little crooked or that your armor is dented and tattered. That just shows you’ve been in the heat of battle. Wear those dents and scars proudly. You’ve earned every one of them…with honor!

Get your oomph back

Most of the time when in pain or dealing with an onslaught of symptoms, you don’t feel like doing anything. The simple act of getting yourself up in the morning, making your bed and showering to begin the day can be daunting. I guarantee you that if you chose to wait until you “feel like it” to get out of bed, it would never happen.

You can’t allow your feelings to win in life and determine your day. You wouldn’t get anything done. It takes strength to stand up to your feelings…especially the ones that lie to you saying that you can’t do something or that you are worthless and of little importance. I describe strength as that little bit of oomph you give when there’s nothing left to give.

There have been days when I have lost my oomph. It’s a slippery little bugger and an easy thing to lose, that’s for sure. I lost my oomph just the other day. I’m not sure where it went to hide…maybe under the bed, or in the closet, or under the refrigerator along with all the ice cubes I keep kicking under there when one falls to the floor. It hid really well though and took me a bit of time to find it.

You know where my oomph was? It was right here inside me the whole time.

Michelangelo, the great painter, sculptor, poet and engineer knew that all too well. When he was selecting marble to use for the statue of David, he had his choice of the finest marble around but settled for what was considered a ruined stone. All the other sculptors rejected the flawed looking piece of marble considering it to be of no value. Do you know why Michelangelo chose a piece others didn’t want? Because he looked inside the stone and saw a masterpiece. He found the beauty and strength within the stone.

You are strong and inside of you is a whole lot of oomph waiting to break out. You don’t have to be perfect or flawless…you just have to be YOU. The strong and beautiful YOU that you are!