Overcoming the critical, negative thinkers when It comes to living with multiple sclerosis

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 attention seekers and broken. We move much too slow for this fast paced world and they seem to think something is wrong with that. And those who don’t need assistive devices; the stumbling, pain, emotional moments, and memory difficulties are viewed in the same way.

I can remember when I first started using a cane. I tried to hide it from people. Not out of embarrassment, but because of the responses it invoked in them. As soon as someone saw me walking with a cane, 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 ”I know what you need to do to make MS go away” responses and having to explain myself in return.

Now that I use a wheelchair, it’s a bit harder to hide my walking difficulties and I’ve gotten better at handling people’s looks, 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 comments made simply shows who they are as a person and has nothing to do with me at all. They are the flawed and faulty ones, not me.

The hardest thing for me is dealing with other MSers or other people living with a debilitating illness who can’t seem to believe it’s even possible to be positive in this mess. I actually feel sorry for them. For their narrow minded, judgmental, opinionated, critical way of thinking. These kinds of people are everywhere too. I can’t seem get away from them but I have learned clever way to respond to their smallness. For me, I let them know that I didn’t ask for their opinions and don’t need their permission to live my life my way. I’m sure this post with trigger some of them and put their thoughts into a tailspin.

It’s sad how negative some people can be. I can say that life is good and they will immediately tell me how wrong I am. I can share a moment of overcoming weakness and they will remind me of how weak my body actually is. I can talk about hope for tomorrow and they will try to pop that hope bubble with cynicism. I can share something positive online and they will twist it into a negative critical way of thinking. It never fails. I have come to realize that negative narrow minded people can’t see any good around them. There is no beauty, no possibility of good things happening, and no chance of a better day tomorrow. I wouldn’t want to live in that world.

One of the most important things I have learned is that multiple sclerosis has not made me less of a person. 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 doing laundry, to even getting out of bed, but although I may not be fast at doing things and some things I can no longer do, I can still do a lot. It may take some creativity and some extra help, but I always find a way to do the things that some people think is impossible to do for a person with MS.

Ultimately, it would be wonderful to live in a world where disabilities took a back seat and negative thinking was obliterated but that day will probably never come. Regardless of what the world thinks, I want you to know that you are not broken, faulty, useless, or worthless. You are a beautifully, patched together, work of art covered in scars yet filled with amazing resilience and strength. You are not MS, a cane, a wheelchair, or an emotional mess. You are incredibly you! You can do anything you want to do it will just take some creative thinking and innovation. Don’t let the nay sayers rule the day. You can be positive in the chaos…there are a lot of other MSers who think that way too. Having negative moments is not bad. Living in negativity is.

MS Gets on My NervesMS WarriorMS Superhero

 

take a break

We all need a break sometimes

I will be taking a few days break from my morning blog writing. We all need time to rest and this is my time. I will miss sharing with you, but will be back Tuesday, July 23rd ready to fill your day with smiles and encouragement once again. I hope you know that I will miss you!

I’m thankful and honored that you would take time to read my thoughts about life and MS. Some days I think I can see you smiling as you read; other days I’m almost positive I have seen a tear fall. You didn’t know I could see those things, did you? I guess it’s because we are in this together…you and I…that our hearts are connected like that. There’s no one else I would rather be standing with than you. We are a bunch of amazing people. Warriors in the making!

Until we meet again (Tuesday), keep going strong. Don’t ever forget how valuable and treasured you are, and stop being so hard on yourself. Give yourself a break too. Eat some pie, indulge in some chocolate, go to the movies, visit the zoo, hang out with friends, get your nails done…do something just for you.

I hope you can feel the hugs I’m sending your way…

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I can’t go through life pretending that everything is okay

This is the truth…the raw truth of a person living with multiple sclerosis. I can’t pretend 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. There is no magic cure and no way of knowing how it will affect me in the years to come.

There are too many fake people out there with their fake solutions, fake cures and fake help. You know it and I know it. That’s just too much fakery for me. I prefer being real even if it’s not very popular.

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. It’s my choice though, not yours. Just like this is my body and my life, I am the one making the choices 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 for 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 being thrown around. Can we be honest about everything? Can we acknowledge that MS is real in my life. 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?

MS Gets on My NervesMS WarriorMS Superhero

 

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