When you have to think to swallow

One of the scarier moments for me in this life with multiple sclerosis is when my throat closes up and refused to allow me to swallow. Many times I have to actually convince those muscles to actually function. Last night was one of those times.

I had a cup of water by my bedside, elevated the head of my hospital bed, reached over for my drink and took a sip. That was when things went sideways. I attempted to swallow but nothing seemed to happen. The muscles in my throat just wouldn’t move. It took me about 2 minutes to get my body to cooperate. I came so close to just spitting everything out and calling it a day.

The hardest time is when something in my mouth goes down the wrong way and I end up having a coughing fit. I have noticed that water is sometimes too thin of a liquid for me to deal with. If the drink has a little bit of a texture or thickness to it, I do much better. Things like orange juice, a smoothie, a milkshake and even a cup of coffee with creamer work better for me.

And people wonder why we are always so exhausted. Maybe it’s because we have to work overtime all day long in order to do the things everyone else takes for granted. When you have to think to walk, think to swallow, think to remember words, think to even scratch your nose…well, that’s a lot of exhaustive thinking and would wear out even the healthiest person around.

I wish there was a switch I could flip to make my muscles work as they were intended or a program I could write to override the glitches in my system. That would make my days so much easier to manage and would be a welcomed improvement.

My morning coffee is not as enjoyable as it used to be but I still make myself a cup each morning anyway. Sometimes I don’t get it all down and end up pouring half of it down the drain…but sometimes I don’t. This morning I finished my cup and for that I’m thankful. It’s the little things in life that really matter anyway.

Life has drastically changed because of multiple sclerosis but I will never give up looking for sunshine in the clouds. This morning I found a rainbow in my coffee cup, tomorrow maybe I will find one in the laundry. Hey, anything’s possible!

MS Gets on My NervesMS WarriorMS Superhero

 

Yes I have multiple sclerosis and yes I still laugh

When terrible things happen, one of the first things to disappear in the chaos is laughter. Somehow all the smiles and giggles that once filled the day get tossed to the wind and pushed aside due to things like fear, anger, sadness and worries.

For many people, laughter just doesn’t fit in with all that’s happening in their crazy, mixed up world. I mean, how can anyone laugh when their life is falling apart? It just seems impossible…absurd…oh, so wrong.

Laughing does not mean a person is ignoring their reality. It does not mean they are being careless, ignorant or naive. It just means that they are putting down all those weighty, life altering thoughts for awhile in order to rest and build up the strength needed for the upcoming fight.

No one knows how long a difficult time will last when it comes to multiple sclerosis. It could be hours, days, years, or a lifetime, and laughter is one of those things that simply makes the steps lighter and easier to make. I, myself, have been known to laugh through my tears. That’s kind of like those times when it’s raining outside while the sun is still shining. Seems impossible, but it happens.

Over the years living with MS, I have discovered that laughter is the very thing, the glue, that holds life together when tragedy strikes. I laugh when I fall, flub up words, have accidents, run into things, confuse my thoughts and even when I forget appointments. If I didn’t laugh I would be crying…and crying takes way too much effort.

Laughter is important. It’s needed. It’s what puts that little bit of sanity into the insane. It brings out the rainbows and butterflies, and chases away the clouds. It seems that once laughter is gone, all else falls apart so much faster and harder.

Never apologize for laughing and don’t ever feel guilty for enjoying life in the struggle. The person that can enjoy the journey regardless of the potholes, ditches and mud puddles is a rare breed. Be that rare breed.

Don’t let the things you are facing today take away your ability to laugh. Wear a smile through the tears, go against the flow and allow yourself to laugh, really laugh…and keep on laughing. It truly does the body good.

MS Gets on My NervesMS WarriorMS Superhero

 

Dear Multiple Sclerosis

Dear Multiple Sclerosis…

Dear Multiple Sclerosis,

You pushed your way into my life at a time when things were going great. Future plans were in place and I was working hard to make them a reality. As you weaseled your way in, you blindsided me and forced me off the path I was on.

All attempts to make you leave have failed. Family members, friends, doctors, nurses, and even strangers have tried, but you have stood your ground refusing to go. I have come at your kicking, screaming, punching, scratching, and even bitting but you haven’t been phased at my futile attempts to wear you down. You have simply dug your heels in deeper and folded your arms in defiance.

You have made me feel like a prisoner in my own body. Why did you choose me? What did I do to warrant your uninvited visit? Where did you even come from? All of my questions have been left unanswered. In return all I seem to get is more unanswered questions and heartaches.

MS, I want you to know that you are not welcome here. If you so desperately need a place to lay your head, there’s a doghouse out back filled with fleas and spiders that you can have. I think the roof leaks too. It seems like a perfect fit for someone like you. And if you get hungry, you can eat from the dog’s bowl munching on moldy, outdated dog food. I hope it makes you sick and die.

I am writing this letter to let you know that you will not win. I am stronger than you give me credit for. If you plan on keeping up this fight—if you continue holding me prisoner—I will never back down. I will come up swinging even on my worst days. If you knock me down, trust me, I will get back up. It may take me longer than it has in times past, but I will keep fighting even when it appears that I have no fight left to give.

You have messed with the wrong person. You do not have the final say in my life. I determine my future, not you.

Signed,
An MS Warrior

P.S. Don’t ever forget, if you bite me… I bite back.

MS Gets on My NervesMS WarriorMS Superhero

 

If you have ever felt defeated, know that you are not alone

Have you ever felt like your whole life was falling apart before your very eyes and that no matter how hard you tried you couldn’t do anything to stop it? That the very ones you thought would stand beside you forever turned and walked away? That in each passing day a wave of hopelessness flooded your heart and clouded your mind, inching you closer and closer to simply giving up? That just the thought of facing one more day filled your heart with tremendous pain, fear and too much uncertainty to manage?

If you have ever felt defeated before, just know that you are not alone. I have been there too.

People who know me, know that I’m not a quitter…I never have been. I face everything with the confidence that I will overcome. But there have been times when I’ve felt like giving up and waving the white flag of defeat. I’m not immune to having the feelings of being overwhelmed, weak and uncertain.

I read a story once about Emperor Tamerlane who was badly defeated in battle. He ran from the battle and  hid himself away in a barn. Enemy troops searched the countryside for him. By this time he was depressed, his troops had been terribly defeated and scattered, and he didn’t know what he was going to do.

It was then that he noticed an ant trying to push a giant kernel of corn up over a stone wall. As he watched this ant attempt to do the impossible, he counted its futile efforts to see how many times the ant would try until it gave up.

One, two, three… twenty… forty… sixty-nine times the ant tried and failed to push the kernel over the wall. But in one last push, on the seventieth try, the ant made it. Leaping to his feet, Tamerlane excitedly said to the ant, “If you can do it, then so can I.” That day he changed his outlook, reorganized his forces, went back and defeated the enemy.

I wish more people understood that every day living with multiple sclerosis I am attempting the impossible, and just like that ant I fail more than once…but I don’t quit. I push, get exhausted, try some more, fail, rest, but still get up and try again.

My entire life seems to be one giant push. I push through pain, weakness, dizziness, blurred vision, muscle spasms, and a lack of sleep. I push and keep on pushing at everything I do. Nothing comes easy, not even something as simple as a trip to the mailbox. I actually have mail in my mailbox that has been out there for a few days. At some point today I will venture outside to get it, I’m just not in a hurry.

Sometimes we need a little ant to remind us that we can do it. That this fight is worth it. That we can make it. That even though things look as if they are impossible, there is still some possibility there. Today, let me be that ant.

Don’t let the fact that MS is a part of your life cause you to feel defeated. You can’t stop trying. You can’t stop pushing that kernel of corn. Don’t let MS win…now PUSH!

MS Gets on My NervesMS WarriorMS Superhero

 

Surprise… it’s a new multiple sclerosis symptom

I love surprises. Well, the good kind of surprises. Things like an unexpected gift, a found 5 dollar bill in your jeans pocket that you didn’t know was there, a pay-it-forward drink at the coffee shop, or waking up to a clean kitchen that you left dirty before going to bed. I welcome those kinds of surprises any day of the week.

The kind I don’t like, especially with multiple sclerosis, are the sudden new symptoms that just show up out of the blue and then never go away. That’s always how mine seem to happen.

Since last week a numbness has been increasing across the upper left side of my face and head. It is to the point now that I can’t feel a part of my forehead and even my left eyeball. It’s kind of weird being numb there, almost like someone gave me a shot at the dentist to numb my mouth only they missed my mouth and injected it into my head instead.

Thankfully I can still blink my eye and move the muscles in my face, but it sure is strange to rub that part of my face and not feel it. I find myself being extra cautious when I do so I don’t accidentally scratch myself.

I’m sure the doctor will put me on a round of steroids to slow down the unwelcome activity in my brain that is causing this new surprise. I would love it if MS would just take a vacation already. Better yet, if while on vacation it got eaten by a shark, hit by an astroid and then vaporized in a sudden explosive lava flow. (You can’t be too cautious in wishing for just one disaster to happen.)

But, since that won’t be happening any time soon I am going to have to get used to my new normal. You’d think I’d be used to doing that by now. Trust me, you never get there. From the onset of MS in my life I have had to deal with some crazy symptoms. Things like ringing in my ears, swallowing difficulties, a decrease in color clarity in my vision, and muscles that twitch and seem to have a mind of their own.

My hope is that this new symptom with subside soon but if it doesn’t, that I will be able to work around the discomfort and new weirdness I’m experiencing. Sometimes that kind of thing is easy to do but sometimes it has this way of rocking your world and taking you to a place you really don’t want to go.

I’ve already had my moment of tears, my cry in the shower time of me washing my tears down the drain. If only I could wash my MS symptoms away as easily as that. But regardless of everything that is happening in my life, I’m going to keep pushing through. You have to do the same thing. Don’t let new progression, new symptoms, or new changes keep you down.

Even though I don’t personally know you, I can tell you that I genuinely love you and that everything is truly going to be okay. I mean that. Don’t allow yourself to become overwhelmed by the changes in your life or the journey you find yourself facing. I’m hoping with you for a better tomorrow.

MS Gets on My NervesMS WarriorMS Superhero

 

Multiple sclerosis has its reasons to bring you down…don’t let it

I don’t have much to say today other than it’s raining outside and I refuse to let it rain inside too. I know that’s something easier said than done but regardless of how things may look, I’m determined to find the good around me.

I’m not having a great start since my alarm clock woke me up after only 2 hours of sleep due to dealing with terrible pain and muscle spasms much of the night, but at least I got some sleep. I could have had no sleep at all so I’m thankful for what I did get.

Those kinds of nights happen more often now than in times past and I’m still tying to work my way through them. That’s something most people will never see or even realize I am facing. Don’t let anyone discount your struggle or assume that it’s not real just because they can’t see it. I doubt they would even make it out of bed faced with the same monster.

I then discovered there are no clean towels in the bathroom. I now have to postpone taking a shower, but at least I have a washer and dryer in my home and don’t need to load a pile of towels and clothes in my car and drive to a laundromat in order to wash them. That’s something to be thankful for.

Did I mention it’s raining out? That means I will have to leave the house earlier than planned in order to fight my way through crazy traffic on wet roads. That’s always an adventure. But at least I have some place to go and a way to get there.

I may seem to be the strong one but I have my moments when I crumble. Somehow my strength still shines through my weakness… especially in my weakness. I think that’s where it hangs out. You have strength out there too. It may not seem like it, but you are so strong. Much stronger than you think.

Every bad thing we face comes with its reasons to bring us down, but along with those reasons there is always another perspective we can choose to see. My choice today…finding something to be grateful for in the mess. No matter what happens or how hard things may get, I know I have to keep pushing on and I am determined to find a spark of hope somewhere in the chaos.

My emotions may be a bit on edge and I may feel rushed, exhausted, weak in body, overwhelmed, and ready to cry, but I want you to know that it’s okay to cry… especially in the rain. Sometimes that’s the best place to cry.

Now, where’s that rainbow. I may not find the end of it or a giant pot of gold waiting for me, but the smiles it provides are priceless.

MS Gets on My NervesMS WarriorMS Superhero

 

It’s another multiple sclerosis day…

I went to sleep early last night after taking a muscle relaxer due to spasms in my legs and hands, a pain pill because the pain was relentless and unsettling, and melatonin to hopefully help me sleep if those didn’t do the trick. I woke up this morning in a daze not remembering much of anything from last night…or from any night for that matter.

It was one of those wake up moments when you can’t remember much of anything about who you are, where you are, or what you plan to do for the day let alone what day it actually is. It wasn’t due to having taken a few pills last night either. I have those kinds of mornings with or without any help from a pill thanks to multiple sclerosis. I call them my amnesia mornings, but at least I slept last night…I think. As of yet I’m still not sure the sleep was productive.

I never appreciated sleep as much as I do now. I either can’t get any or all I want to do is sleep. There’s no in between. I don’t think I’ve actually gotten a good nights sleep in years. I know I’ve never opened my eyes in the morning feeling like I was refreshed and rested. If I ever did, trust me, the world would know about it.

But regardless of how I feel, today is a new day and here I am needing to get myself going so I can conquer it. Hey, just waking up is an accomplishment, right?! So, I’m already over half way there. Divide and conquer as they say!

You are too. You are already winning the battle of the day. You’re awake. You’re alive. You’re reading this! That’s already a huge accomplishment. You can’t give up now. Take it slow if you need to just don’t stop.

For me, there is so much needing to be done and I can already tell you I have zero energy to do any of it…but I’m ready for whatever life may bring. If I have to take lots of breaks, that’s okay. I will pause as much as I need to, I just won’t give up. Some days it feels like I’m fighting my day with an inside out umbrella caught in a rainstorm. It definitely makes for some interesting moments.

I have one good thing happening today. My new powerchair is going to be delivered at around noon. I’m excited already about that. I only remembered it was coming because I had added it to my calendar. I will probably have a nap before they come, but I will be ready, I hope.

I really do live by the “minute by minute, moment by moment” motto, and at this very minute coffee is calling my name so I’m answering the call.

When the day is over, be grateful for making it through another MS day. I know it’s not always easy, I know the challenges can get overwhelming, I know how alone and isolating MS can make you feel, but you are making it, you are doing it.

If no one has told you how truly amazing you are, I will. I’m proud of you for not giving up. I believe in you. You are AMAZING!

MS Gets on My NervesMS WarriorMS Superhero

 

Haven’t you heard…Multiple Sclerosis has been cured?!

We live in a world filled with opinions. You can’t do or say anything today without someone giving you their opinion about the right and wrong way to do or be. (Keep in mind, this post is just my opinion.)

If we spend our time listening to all those voices, we would go mad I tell you… absolutely mad. I know people mean well, but the judgmental, know-it-all attitudes have got to go. When I was a healthy person, I would get a lot of opinions thrown at me about how to live, but now that multiple sclerosis has taken up residence in my body, I’m bombarded with even more opinions. Someone once said, “It’s funny how people have strong opinions on things that they know nothing about” and that is so true.

There are opinions about what I should eat and what I shouldn’t eat, what meds to take and what I shouldn’t take, what exercises to do, what prayers to pray, and what supplements to take. I’ve heard every conceivable cure from old wives tales to what a friend of a friend of a friend did to rid their body of this monster.

I have also heard everything people stumble upon on the internet. They make it a point to let me know all about it and what I need to do. If only I would rub Calamine lotion all over my body while standing on one leg and singing Itsy Bitsy Spider at the top of my lungs…I’d be cured. Why am I not doing it? I must not really want to get better.

Have you ever wanted to just smack someone like that upside the head? They mean well, but come on. Do we still think as a society that the internet is a valid, 100% reliable source of information? It’s basically all opinion. You can find any source you want to back up your idea if you look hard enough. If you choose to believe than unicorns and leprechauns are living in your backyard and want to prove your point, I’m sure you could find a website out there that would validate it for you.

Living with multiple sclerosis is not easy and we all want a cure to be found, but we don’t need to be criticized or judged by others for how we choose to deal with this disease all because of something you can read online. There are different types of MS, differences in the people living with it and different progressions that can happen. That’s a lot of differences to try and cram into one fix-all solution.

How about this? Do your best to shut out all the opinions flying around you and choose to simply enjoy life. That way you can cut out the stress that comes with all those opinions and can use your time instead to create amazing memories with the people you love. After all, that’s what really matters anyway.

MS Gets on My NervesMS WarriorMS Superhero

 

Sometimes a life with multiple sclerosis can feel like everything is falling apart

A life with Multiple Sclerosis can be a physically challenging, emotionally draining, around-the-clock exhausting and makes for some extremely lonely times. Someone without MS may wonder why that is.

Well, everything we do takes an extraordinary amount of effort to complete and some things become nearly impossible to do. Try going through a day not knowing if you will be able to manage another moment of relentless fatigue, dizziness, muscle weakness, bathroom mishaps, dropping of anything you get your hands on, lots and lots of pain, and feeling as if you don’t have the strength to hold it together for one more second.

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 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 it, 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.

It’s okay to feel as if 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 new ways of coping with all the changes happening in your life, I can guarantee you that, but in the moment or in the heat of the battle it may not seem like it’s even possible.

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.

It’s okay to ask for help and to talk with your doctor about ways to help you manage the emotional chaos you find yourself in. Don’t try to go this alone. Hang in there. There is still hope for a better tomorrow. I believe in you even when you don’t believe in yourself. You are going to get through this. Take a deep breath, shake off the gloomy’s, hold your head up, and don’t be too ashamed to reach out for help. We all need a helping hand.

MS Gets on My NervesMS WarriorMS Superhero

 

Sometimes because of multiple sclerosis I have a hard time staying focused

I was making a shopping list the other day and forgot how to spell the word pencils. In my mind it didn’t even have the letter c anywhere in it. I struggled for nearly five minutes thinking and thinking and then thinking some more about that silly little word. The more I thought about it, the weirder the word became.

It wasn’t as if I was dealing with something complicated like the word prospicience or eudaemonic. Now don’t be too proud of me, I didn’t know those words either until I searched Google for hard to spell words, and I still don’t know what they mean. Auto correct didn’t even like the first word.

My brain has lost most of its ability to think deep and stay focused on something for an extended period of time. I rely more and more on technology, friends and good ole post-it notes with each passing day to help me stay somewhat organized.

It used to make me upset that things were changing so much. It frustrated me more than anything else going on, but I’ve learned to not rely on my feelings too much. They have a tendency to mess me up. Don’t get me wrong, I still have moments when I tear up because the reality of my life becomes a bit too overwhelming, just like the other day while making my shopping list. I sat and cried over a word. A word?! Who cries over a word?

Silly, I know…but I have found that we all need a good cry every now and then. It’s not weak to cry. It’s not a sign of giving in, giving up or letting MS take over. It’s simply a pause in life to refocus and let go of the stresses, fears and pain that have had time to build up. Besides, we all know what can happen when you don’t relieve the pressure from a building volcano or a backed up water hose, right? They explode!

Don’t be too hard on yourself when you break down sobbing in the shower, after getting in the car from a trip to the store that wiped you out, or even because of brain fog moments. Give yourself time to cry, to feel. The most beautiful rainbows I have ever seen have been after a rainstorm, so just imagine the beauty that you will see after the tears. Keep shining, keep hoping, keep going.

MS Gets on My NervesMS WarriorMS Superhero