I’m beyond exhausted

At the end of an exhausting day yesterday, I collapsed into my bed and tried to sleep. You know, that thing where you curl up, close your eyes, snore and drool? Unfortunately, it didn’t work out for me last night.

I spent the entire time awake through the yawns. I even tried counting sheep but they were no help. I think they actually went to sleep without me because at some point in the night I ran out of sheep to count. Now, here I am still awake at 5:30 AM watching the sun come up and wondering how I’m going to get through my already exhausted day.

Just so you know…

I know what it’s like to lie down in the bed at the end of the day only to watch the clock as the minutes tick by with each passing hour.
I know about those moments you are about to drift off to sleep when your brain suddenly gets this weird burst of energy and decides to wake up and ponder everything ponderable.
I know the feeling of frustration and discouragement when MS seems to be winning the battle with sleep as muscle spasms and pain relentlessly pulse through your body.
I know what it’s like to drag yourself out of bed in the morning so exhausted, and with your muscles so tight, that you can’t move gracefully…or even at all.
I know how it feels to stumble into the kitchen to start your day when your entire body feels like you woke up with a hangover times ten.
I know how hard it is to put a smile on your face when you at greeted by a cheery “good morning” from your spouse, child or hungry dog.
I know what it’s like to think to yourself day in and day out, “If only I could sleep through the night, life would be so much better.”

I know what it’s like to be chronically tired.

I can’t promise you that you will ever feel completely rested when you get out of bed each morning even if you’ve slept through the night, but I can promise you that you will make it through your exhausting day…eventually, minute by minute, step by step.

Hang in there today. You’re doing great, even if you are too tired to see it. Living with multiple sclerosis is truly exhausting but you will make it through your day and you will be stronger for it.

The truth from a person living with Multiple Sclerosis

This is the truth, the raw truth from a person living with Multiple Sclerosis.

I can not go through life pretending…pretending that everything is okay, because the truth is, it’s not. Let’s get this out in the open instead of constantly whispering about it in the shadows. I am living with a chronic illness. You know it and I know it. It’s not by choice either. I didn’t pick Multiple Sclerosis out of a line up or grab it off the store shelf.

MS is not my fault. I didn’t cause it by the way I eat or the things I do. It’s not payback either for the things I’ve done in my past no matter how bad they may have been. MS picked me out of a crowded room and decided I was the one it wanted to live with. I had no choice in the matter.

The choices I do have are in what methods I decide to pursue in dealing with this illness. Those are my choices though, not yours. Just like this is my body and my life, I am the one making the choice in the way I will seek treatment. You have your own hardships and struggles to face.

I’m sure you wouldn’t like me getting into your business and matter-of-factly pointing out everything you need to be doing regardless of if I even know what I’m talking about.  I’m not here to tell you how to live your life by giving you step by step solutions to all your troubles, so please stop judging me in how I live mine.

It hurts when people refuse to accept my diagnosis. MS is hard enough as it is, I don’t need finger pointing and constant “if you only” statements thrown around. Can we just be honest about everything? Can we face this together so I don’t have to face it alone?

I may be strong, but I’m not bulletproof. I keep going because MS has made me a stronger and better person, but that doesn’t mean I don’t hurt. The truth is I get scared, fail, struggle and even break. I don’t give up though. Nope…not me. I’m a fighter by choice and will keep fighting every day that I live. That’s the truth of my life.

Will you stand with me in the fight? If not, then get out of my way because I’m swinging at anything coming at me.

My body is in a constant State of Emergency

It rained much of the day yesterday and will keep raining throughout the day today. It’s just one of those stay in my PJ’s kind of days. I’m already snuggled up on the couch with my coffee and laptop, and wearing my fuzzy socks with the TV remote nearby so I can binge watch Star Trek. Yes, I’m a Trekkie!

I’m even prepared if the power should go out with a flashlight nearby…just in case. You never know so it’s always good to be prepared.

When a storm causes a power outage, it messes up our normal routine. Stores and hospitals will switch to a battery backup system or a generator to keep minimal equipment functioning until the power is restored, but many homes are ill-equipped for those times. Most people find themselves out of sorts and scrambling to gather the basic necessities to get through until the power is restored.

Living with multiple sclerosis is much like those power outage moments. Our Central Nervous System (CNS) is short circuiting on us due to downed lines and broken substations. Sometimes minimal outages happen which are easily managed even if they are out for an extended period of time, but when our ability to function normally (such as walking, talking, eating or speaking) are disrupted, it’s challenging to get through those times. It would be amazing if we could simply plug into a battery backup or a generator to restore the power until our CNS could be repaired.

CNS Workers are dispatched the moment an outage is discovered, but most of the time the damage to our CNS is unable to be repaired thus causing our bodies to remain in a constant State of Emergency. Some pathways are no longer able to be traveled down and there are “bridge out” signs posted everywhere.

We are left limited in what we can do. It’s not easy, but we adapt. We have learned to store up extra candles, flashlights, propane tanks and matches, but those things can only last so long. For many of us, our spare flashlight has already burned out and our candles have run out of wax so we improvise and MacGyver things together just to get through the day.

We find ourselves limping through life knowing that this is just how it is. That our life has permanently changed as new storms keep blasting through the already accumulated chaos.

You may be experiencing an unexpected outage right now. Those times can be scary, but don’t panic. You are going to make it through this. You can’t give up.

You know that old saying “when the going gets tough, the tough get going”? Well, that’s you. You’re tough and much stronger than you realize.

You didn’t ask for this fight, you’re not always equipped for the challenges it brings, but through everything you face, your strength shines through even if it is spent snuggled up on the couch binge watching your favorite show on TV.

You are strong even when you break down in tears just because you couldn’t get to the bathroom in time or when you end up spilling your lunch all over you because you couldn’t hold onto your plate. When your body trembles, your muscles give out and your voice shakes, you are still amazingly strong.

Your body may remain in a constant State of Emergency but through it all keep hoping for a better tomorrow because tomorrow things could be better. Never stop hoping, never stop trying, and never EVER give up.

Remember, you get where you are going one step at a time. Don’t give up now. Take a break, rest, but don’t stop pushing through. You got this!

There’s an earthquake happening inside my body – Today’s guest blogger on MSAA’s MS Conversations

When someone mentions multiple sclerosis, a lot of people immediately think of numb body parts, walking difficulties and fatigue. Those symptoms are fairly well known, but there is so much more to this disease and so many more struggles that we endure daily – sometimes silently – that should be talked about and shared….

Read today’s post at MS Conversations:

http://blog.mymsaa.org/theres-an-earthquake-happening-inside-my-body/

flower

It’s the little things that make life big

What is it about life that makes us think we need to do everything big? Big parties, big presents, big houses, big meals, big, big, big. I have noticed that if someone has a choice of two boxes, one big and one small, yet they don’t know what’s inside either one, they will typically pick the bigger one.

We do that with our lives too. We get so focused on the big things happening that we often miss the little ones, yet it’s those little ones that make up our days and truly make our lives go around. I think sometimes we get so busy looking for the perfect place to live, the perfect job, the perfect spouse, the perfect kids, the perfect health, that we often forget what really makes our lives enjoyable. It isn’t the big perfect anything. What brings smiles to our faces are the little things that get us through our days and most importantly, through the hard times.

Sometimes it’s just a phone call from a friend or a person holding the door for you at a restaurant. Sometimes it’s having a child hand you a fist full of weeds or putting freshly washed sheets on the bed. Sometimes it’s quiet times in the morning or noisy times at dinner. Sometimes it’s things you can’t even explain because it’s just a feeling you get deep inside.

It seems the big things are what flips our world upside down and it’s the little things that turn it right side up again. Without the little things, I think the world would stop spinning altogether and fall off its axial. It’s the little things that hold everything together.

Take time today to enjoy the small moments that bring you joy, and just so you don’t forget about them, take time to write them down. This way you will have a forever memory of those special moments. Fill the pages of a blank book, a notebook, a memory book, a computer text document or what I like to call a gratitude journal, with your happy thoughts; those things that made your day extra special or brought a smile to your face.

This way, when you are having a terrible, horrible, awful, upside-down world day, you can read through those memories and find a smile to set things right again. Trust me…it helps. When I pull mine out and begin to read, without fail, I find myself smiling and sometimes even laughing. Those smiles and laughs, those memories…they happen because of the little things.

Make the most of your day today, live in the moment, and never forget the little things that get you through the darkest of times.

Why I do what I do

In the past month, I have been approached by two different companies to join in with them in order to reach more people living with multiple sclerosis. That sounds great, doesn’t it? I mean, that’s what I want to do. I want to touch as many people living with MS as possible with a message of hope, help and encouragement. Go for it you say, right?!

The problem is, in digging further into both of these businesses, I discovered that they make a profit by selling their customer data. Everything you do on their sites from talking with others, to plugging in the meds you take, to sharing your symptoms and difficulties is collected and sold off for their gain to pharmaceutical companies and research. That doesn’t sit well with me. I value the trust you have in me too much to get involved in things like that.

For me, it’s all about integrity. Everything I do, I do for you. I have you in mind from the moment I wake up to the time I go to bed. Not thinking about how I can make a few bucks off of you, but how I can make you smile or ease the burden you carry. That burden is heavy. I know because I’m right there with you walking the MS journey too.

When you stop by my online store and buy a shirt or send in a donation, that helps me to cover the costs of running this website. It never covers it fully, but I don’t care. Has someone been helped because of something I posted or said? That’s what matters to me. That’s all that matters to me. You matter to me.

I know today’s post is a bit different than usual, but I wanted you to know how important you are to me. It’s a messed up world out there but I have chosen not to get messed up with it.

If you are hurting today, here’s a virtual hug from me to you {{{{{{{{hug}}}}}}}}. If you are weary and tired, hang in there. You will make it through this time. If you are engulfed in stormy clouds and torrential rains, hunker down and take a break. It’s okay to pause, and I can guarantee you the sun will shine again.

Keep this in mind as you go throughout your day: When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something’s suffered damage and has a history it becomes more beautiful.

You are gorgeous even in your brokenness.

A Multiple Sclerosis hero is…

Multiple Sclerosis heroes come in all shapes and sizes. You normally can’t pick them out from the people standing in line at the grocery store or from those seated in a restaurant…but they are there. MS heroes are those amazing people who charge into battle when they have every right to hide under the covers. They don’t fit into any particular mold, wear a noticeable badge of honor or win any bravery awards. But brave…oh, they are!!!

It’s not easy to become an MS hero. You can’t wish yourself to be one just because you want to be one or simply slap a label on your forehead that says “Look at me, I’m an MS hero.” You can’t gain such a title by merely blogging about it, dreaming about, or talking about it.

You become one by staying in the fight and hanging in there even when you’re shaking in your boots. You hang on through the hard times as you learn to cope with the constant changes, through the emotional rollercoaster you find yourself riding, and even through the struggle of dealing with people who disappoint you.

Part of becoming a hero is standing up (even if only on the inside) when terrible things happen and choosing to push through the hard times while holding your head up high as the tears are flowing. Yes, heroes cry. They fall, tremble, get fearful, worry, hurt…but they don’t give up!

A Multiple Sclerosis hero is…
someone who wakes up in the morning feeling terribly awful but chooses to start their day anyway.
They rise to the challenge of the day even when the challenge is overwhelming.
They see the struggle that needs to be overcome and face it…head on.
They stand in the front lines shoulder to shoulder with others just like them.
They push past the stereotypes the world uses to define MS and choose to define MS in their own terms.
They refuse to quit.
They find victory at the end of each day, even when feeling defeated.
They look MS eyeball to eyeball and say “Don’t mess with me.”
They experience pain and difficulties but push on anyway with the smallest of strength they have left.
They have learned because of being in the heat of battle that life is more than careers, fancy cars and big houses.
They experience fear, worry, doubts, and even sheds a few tears of their own, but never let those things stop them or hold them back.

Look in the mirror today because staring back at you is an MS hero! Yes, you are strong enough, you are brave enough, you are tough enough. Wipe those tears away and greet today with a smile, oh mighty MS hero!

For the love of shoes

I love shoes. I really do. Even though I’m tall—over 6 foot—I would wear 3 inch heels proudly. When multiple sclerosis came along, it messed up my shoe choices. I could no longer wear heels because my numb feet and legs were unable to manage even the slightest of wobbles or unsteadiness. I also had a tendency to walk out of a flip-flop without even realizing I had done so and slip-ons, well, let’s just say they wouldn’t stay on.

I remember the day I decided to pack up my unwearable shoes to donate to charity. It was a hard hitting blow of reality for me. One I didn’t want to face but knew I needed to undertake. I couldn’t walk in most of the shoes I owned and they were just filling up space in my closet, so instead of seeing them every day and feeling sad because I couldn’t wear them, I decided to pass them on to those who could. It was a tearful time, but a freeing one as well.

And for anyone thinking, “Oh, just save them to wear anyway since you’re in a wheelchair.”

That’s not actually as simple as it sounds. It’s amazing how unstable my feet, ankles and legs are even from a seated position in a wheelchair. Flats are my only option, although I have been known to leave the house barefoot more than once. Besides, I can still look stylish in flats.

I knew by giving away my unwearable shoes, I would be able to bring smiles to people and that someone would be walking tall and proud in a new pair of heels—new to them at least. That made my heart smile. Knowing that I was helping someone else made my day brighter.

Over time, I have realized that there are moments when reality knocks on your door and other times when it smacks you upside the head opening your eyes to what you’ve known for quite some time…that multiple sclerosis has changed your life. But don’t let MS change your heart by allowing it to grow bitter and resentful of what you are no longer able to do.

I guess some people could see me giving my shoes away as not being hopeful enough. That I am giving up and allowing MS to call the shots, but I don’t see it that way. To me, if I’m not using something, I would rather give it away to those that can than keep it stored away for a future time that may never come.

That’s reality, not hopelessness…and besides, they are only shoes. If the time should ever come when I’m able to walk free or even dance, at that time I will go shopping and buy a new pair of shoes.

Life is so much more than shoes and, oh, so much more than things stored away. Life is for living now….today. Don’t hold onto what used to be. Move forward into the now and live, letting go of those things that hold you back.

How do you live with Multiple Sclerosis?

When people ask me how I do it, how I get through my day living with multiple sclerosis? I’m not really sure how to respond. The best answer I have been able to come up with is, “I just do it.” I know that’s not a deeply profound response and Nike already has rights to the saying, but the question is not really something that can be answered.

MS invaded my life without my permission. It simply moved in and took over. It’s not something I can simply choose to no longer have around. If only it were that simple. To just say to MS, “Get lost.” Wouldn’t that be incredible? Only I would use some rather different words that might offend some people and would be sure to have an uzi, a battle axe and a few hand grenades along with me too.

Since I can’t force MS out of my life, I have to learn to live with it. There’s no other choice. I can try ignoring it, but ignoring something screaming in my ear and chiseling away at my insides isn’t possible.

From the outside my invisible struggle doesn’t seem so bad to people. It actually looks quite easy. But if you could look inside my body and truly see what I am dealing with every day…Oh, my, what a different story you would have to tell.

If there was a picture window into my life, people would see that my Central Nervous System (CNS) looks much like the chaos after a storm has blown through town tearing up everything in sight. Some areas in my CNS have been damaged, others completely destroyed. The foundation is still there, but the pipes have burst and the electricity is out.

After a storm people work tirelessly to patch things up as best they can to try and get their house back working, but it will never be the same. There will always be remnants of the storm that came through and never a guarantee that another one won’t blow through again.

Today, I live in a pieced together body with duct taped wires, glued together pipes and heavily caulked walls. Things still leak, wires still get crossed and new storms still show up, but I “just do it.”

Elizabeth Taylor, who struggled daily due to lifelong chronic back pain, said it oh so well…“You just do it. You force yourself to get up. You force yourself to put one foot before the other, and [gosh darn it], you refuse to let it get to you. You fight. You cry. You curse. Then you go about your business of living. That’s how I’ve done it. There’s no other way.”

I am not broken

In today’s world, we are constantly being made to believe that something is wrong with us because we have multiple sclerosis. Those of us using walking aids, wheelchairs and braces for some reason are seen as broken. We move much too slow, drop things way too easily and need help way too often with even the simplest of tasks for most people to bear. And those with MS who don’t need visible help…the stumbling, pain, emotional moments, and memory difficulties are viewed in the same way: an inconvenience for others.

I can remember when I first started using a cane. I tried to hide it from people. I really did. I would wait until the last moment possible to get my cane in hand in order to walk across the parking lot of the grocery store. I would try to keep it as close to my right leg as possible thinking it would make it less noticeable. It didn’t, but I tried anyway.

The walker was much harder to hide. I felt like I was pushing around a truck with caution signs and flashing lights. “Look at me, here I come! Beep, beep, beep.”

The responses it invoked in people was not always comfortable to handle either. As soon as someone saw me with a walker, the questions began…too many questions, and ones that required exhausting explanations. I wasn’t ashamed of MS, I was simply tired of the constant “What’s wrong with you?” questions met with “I know what you need to do to make MS go away” responses.

Sometimes for me, the easiest response was lying and saying “It’s a football injury.” That was always met with a smile and a nod…even though I’m a girl. What? Sports injuries are more readily acceptable than a chronic illness?

Now that I use a wheelchair, it’s a bit harder to hide my walking difficulties but I’ve also gotten better at handling people’s stares, questions and comments. It still gets to me at times, but I’m okay with most people’s responses. I’ve come to understand that the negative and insensitive comments made by people simply show who they are as a person and has nothing to do with me.

One of the most important things I have learned is that multiple sclerosis has not left me broken. Cracked? Maybe…but I think I was cracked way before MS came along. If anything, it has opened my eyes to seeing the real me and to seeing how broken this world really is.

Yes, it takes me longer to do just about everything from checking the mail, to vacuuming the floor, to getting out of bed. But even though I may not be fast at doing things, I can still get to where I’m going. It may take some creativity and some extra help, but I make it every times.

Ultimately, it would be wonderful to live in a world where disabilities took a back seat to who we are as a person. That day will probably never come, but regardless of what the world thinks, I want you to know that you are not broken.

You are a beautifully patched together work of art covered in scars yet filled with amazing resilience and strength. Your scars display an amazing roadmap of courage. You are not MS, a cane, a wheelchair, or an emotional mess. You are incredibly you! You are important, needed, and wonderful just the way you are…and don’t you ever forget it.