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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.

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.

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!

believe

I believe in you

I didn’t get this far in life alone. I had help…and lots of it. The support of family, friends, teachers, coaches, doctors, pastors, neighbors and strangers were invaluable. At times when I was impatient, they helped calm my emotions; when I was filled with fear, they showed me I was stronger than I could have ever imagined; when I felt hopeless, they encouraged me; when sad, they made me smile. I couldn’t have made it by myself. Continue reading “I believe in you” »

Every day seems like moving day

Packing up your house and moving hundreds of miles away can be a daunting task for a healthy body. Add Multiple Sclerosis into the mix and it can become terrifying. That’s not an over exaggeration either.  Anyone who has moved can testify to that. The energy it takes to box up you entire life, load it into a moving truck and then unload it a few days later, wears a body out. It is my job now to make sense of the mess and boxes as I work to put my life back into order.

It’s kind of the same thing when diagnosed with MS. It’s as if one day life was going great and plans were set…then bam, it’s time to pack up and move from your normal, ordinary way of doing things into a new way of living filled with uncertainties almost on a daily basis. Sometimes those shifts are easy to make. Sometimes they are the hardest decisions you could ever imagine possible.

I still remember the day I started using a cane to help me walk. I was so stubborn at first. I knew I needed something to help me because I was stumbling and wobbling about, but I just couldn’t break down and get a cane. My doctor was the one who made it clear I needed to get one. She told me that a broken bone was not near as easy to fix as broken pride. Boy was she right.

I have had that same struggle with each major life changing moment along with way due to MS progressing and causing me challenges. Going to a walker was another huge move that I found hard, then a wheelchair. The wheelchair was a really tough decision.

I have also had tough changes to make around my house to make sure I’m living as safely and as comfortably as possible. Things like shifting to using lighter silverware to eat from since my old set of forks and spoons were heavy. Or placing my dishes on lower shelves for me to easily reach on my own. Or having grab bars installed in the shower. Or adding a ramp to the entrance to my house.

There are so many changes we make as this disease progresses. One thing I have learned over the years, MS will shed you of your pride one way or another. It gets chiseled away little by little. You would think by now I would be pride-free, but I still have a hard time asking people for help. Not in everything. But sometimes I still find myself just wanting to do things on my own…even if I have to struggle in the process. And I don’t think that’s a bad thing.

It’s okay to have a stubbornness in you that refuses to give up. It’s okay to ask a friend to allow you to do something even if you struggle in the process. It’s okay to try, try, and try again all on your own. But it’s also important to know when to ask for help. There’s nothing wrong in asking someone to help you do something. The asking part gets easier, trust me. And besides, from my experience, people really do want to help. Many times they just don’t know what they can do so they pull back and do nothing. When you open up and become honest with others about your true, genuine needs, most are ready to jump in and be a support. We just have to ask.

And to the ones that aren’t a help…you learn who they are fairly quick and that’s when you start to lighten your load. I’ve throw a few boxes off the truck in my lifetime. Make sure the people around you are a support and not a hindrance. It’s okay to lighten the load. I’ve had to shed a few people from my life because they caused me more trouble than helped.

Moving is tough…but it’s also rewarding. You learn who your true friends are in the process. Not may people are going to carry a heavy couch up three flights of stairs for you. Hold onto those people and be sure to let them know how much you appreciate them. Sometimes we forget to tell them.

Living a life of thanks with Multiple Sclerosis

Being thankful when you’re hurting seems like an impossible thing to do. How in the world can anyone live a life of gratitude in the middle of a life of pain? You may be looking at everything happening in your life right now and thinking I’m crazy to even suggest such a thing. Being thankful with Multiple Sclerosis on top of everything else going on in life? Yeah, right!

When you look around all you see is pain and hard times. You can’t see anything worthy of thanks. Tears happen way more than smiles. I get it. I understand how overwhelming and difficult it is to live a life of constant change and uncertainty.

Do this for me…take a moment, pause and look back at your life. Look at everything you have come through over the years. You have faced circumstances that seemed impossible to others as well as yourself, but you made it through those times. You have seen heartaches and heartbreaks. You have walked through hell itself more than once. Most of those times you don’t want to relive, but as you look back you find things to give thank for. After all, you endured and didn’t give up. The strength and wisdom you gained during those times are lessons worthy of thanks and gratitude.

Giving thanks when you’re hurting is something most people don’t want to do, just like most don’t want to go to the dentist for a root canal or start a new diet, but the rewards are worth it. You can’t give up hope and allow the weight of your current circumstances keep you from seeing that life is filled with more than just momentary pain. It’s filled with beauty too.

Pain has a way of changing our lives for the good if we let it. You don’t have to give thanks for Multiple Sclerosis, but you can be grateful for the things it has taught you and continues to teach you. When you approach life with that kind of thinking, you find that being thankful is not only possible but doable.

Find three things you are thankful for today. You can have a hundred thing to want to complain about but choose to focus on those three good things. Tomorrow do the same thing…then the next day and the next day do it again. I challenge you to a week of gratitude. Can you make it through an entire week focusing on things each day worthy of thanks?

I’ll start…three things I’m thankful for today
1. a good cup of coffee to wake me up after a night of no sleep.
2. the beautiful people in my life that go out of their way to help me do the things I can no longer do.
3. that my move to Alabama went well and I’m starting to get my house organized and feeling like home.