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

 

I am not multiple sclerosis and have not been misdiagnosed

I can’t seem to go through a week without someone voicing their opinion as to how I am to rid my body of this monster called multiple sclerosis. Some have suggested that I don’t even have MS at all; that it’s actually Lyme Disease or a deficiency of B12 or Vitamin D and that I just haven’t been properly diagnosed. All of those answers come from a place of a lack of information and too much Google.

Anyone can be tested for Lyme disease, B12 deficiency or low Vitamin D since those are simple tests to perform. I understand that some people in the world have been improperly diagnosed because a doctor rushed through the process and didn’t look at the tests properly, but most of us living with MS are real and not a misdiagnosed statistic.

The difficult thing with diagnosing multiple sclerosis is that there is not one specific test to complete in order to prove you have it. It takes multiple tests to rule out other diseases and even then the signs have to be progressed enough to properly point to MS. The further the progression, the easier the diagnosis.

Mine was and has been rapid progressing so it was easy to determine that I have MS. Within just a few weeks from onset I was diagnosed. Some people are left in limbo for years as the doctors work to rule out other things that mimic MS before being able to make a final diagnosis.

I know that puts a person’s life in a place of uncertainty and at times causes great stress, but if the doctor said it was MS without really knowing for sure, it could be harmful for the patient. MS treatments could cause great harm to someone who does not actually have MS. That’s why the doctor needs to be certain.

A good Neurologist knows what to look for, so if you are stuck in limbo land, find a Neurologist to get tests done and if needed, get a second (or third) opinion. And be thankful if the problems haven’t progressed far enough to truly detect or if it is determined to not be MS. Those of us living with progressive MS wish we were so lucky.

I also get messages from people informing me of how I can be cured. It’s bad enough to be told I’ve been misdiagnosed, but to be told I could easily be disease free “if I only _______” causes even greater stress. Just because someone was supposedly healed of MS by going to a prayer meeting, taking a certain set of vitamins and supplements, undergoing bee sting therapy, or eating a specific diet doesn’t mean it will do the same for me. We are all individuals with unique DNA and cellular makeup.

The question that really matters is can you go through the hard times in life and still find something of purpose to live for? Can you face tragedy with the courage of a lion even if you do it trembling? Can you see the good in the progression of a terrible disease? Can you tune out all the opinions and voices out there trying to tell you how to live your life and just be yourself?

Don’t ever let someone’s opinion of you affect who you are, and don’t let MS define you either. You know who you are more than anybody else on the planet. You are the one getting out of bed each morning and forging ahead in the struggle. You are not a diagnosis, a misdiagnosis, or a specific disease or ailment. You are oh, so much more.

Hold your head up and go through your day today with confidence knowing that you are amazing, beautiful and on a journey that has the potential to inspire others as they watch your quivering courage. You have what it takes to get through the days and weeks ahead. You are strong enough. You are brave enough. You are tough enough.

Be yourself, whoever you are!

MS Gets on My NervesMS WarriorMS Superhero

 

clock

Some mornings multiple sclerosis makes getting my day started difficult

Have you ever had one of those days when you woke up feeling so bad that you wished the day could just be canceled? That an announcement could be made over the radio…”Today has been canceled due to too many broken nerve signals. It looks like a bad one out there. Stay home and bundled up. We’ll keep you posted on any changes.”

That’s my day already and it’s only just begun. I’m lying here in my bed as I write and dreading the simple act of getting up to do anything productive. I already made my way to the kitchen earlier for my morning wake up juice and know how much of a challenge that was. At least my wheelchair battery was charged and the coffee was set on an automatic timer so there was already a hot brew waiting.

I would really like to just to stay here in my bed surrounded by these fluffy pillows and fuzzy blankets. Can someone just bring the day to me instead? That would be nice, wouldn’t it? But as we know, life doesn’t work that way.

We have to get up and meet our day face to face, eyeball to eyeball. It would be amazing to be able to take out one of those eyeballs with a good strong right hook just to get things started. No matter how much I want the day to come to me or simply stop altogether, I know I have to find the strength to get up and get things going for myself.

Don’t let the fact that you feel bad dictate your day. The pain in my legs this morning is relentless, vertigo is already trying to take over my day and my ability to swallow is challenging. I am actually rearranging my day in my head because I already know that much of what I wanted to get done today isn’t going to happen. I hate having to do that, but a life with multiple sclerosis is filled with changes like that.

My biggest challenge today is getting up, getting dressed and starting my day. I know that normally once I’m up and going, I’m doing better. It’s just trying to convince my body of that fact can be the difficult part. Am I the only one that feels this way? I sure hope not.

Regardless of how you are feeling right now, at this very moment, today belongs to you. Do the things that need to get done and leave the rest for another day. No guilt and no remorse for slowed or delayed progress.

I believe in you and know that you can muster up the needed strength to take on today no matter what you are facing. Pause, take a deep breath, give yourself room to actually smile (yes, that’s possible), and take control of what you can in the chaos. You’ve got this!

MS Gets on My NervesMS WarriorMS Superhero

 

When you feel like giving up…

When everything seems to be falling apart and the struggle to simply get out of bed becomes a monumental feat.
When the tears flow, the anger rises, and fears take hold of your day.
When the fatigue becomes overwhelming.
When you feel all alone because no one understands how hard even the simplest of things can be.
When your bladder fails you in public.
When your legs unexpectedly give way.
When the floor becomes the enemy and then your friend as you hug out your frustrations together.
When your vision blurs, your muscles twitch and your hands can’t even hold a cup of water.
When the pain becomes unbearable.
When your career ends and even your passions begin to slowly fade away.
When multiple sclerosis steals your joy and hides your laughter.
When the uncertainty of tomorrow becomes so great that even you don’t know how to overcome the worry.
When all seems lost, dark and dreary.

When you feel like giving up…don’t!

Find something in the middle of all the chaos that brings you comfort whether it’s a fuzzy blanket to snuggle with, a friend to sit with, or your favorite song to listen to. Allow yourself time to vent and time to cry. It’s really okay to do that.

There’s nothing wrong with allowing yourself to feel. You’re human. You have real life struggles going on. Letting out all that built up emotion is necessary to allow the steam out and avoid an explosion.

But when you’re done with your screaming, crying and punching—when you have no voice left and no more tears remain—weed through all the mess in your life and find a smile. You know, that thing where the corners of your mouth turn upward and at times even a giggle seeps out? Yeah…that thing.

Put on the funniest movie you know of and laugh…hard. Remember a funny story from days gone by. Talk with a friend and allow yourself the chance to enjoy the moment. Laugh yourself through the pain, frustrations and fears.

Laughter is amazingly powerful. It has this way of pulling you out of the deepest of pits and lifting you up. It can cause your belly to ache and your ribs to hurt, but that kind of pain is worth it. Laughter lightens the air around you and gives you the ability to fly.

Soar with the eagles today. Find your smile, grab onto a laugh and spread your wings. On this day, today…you can’t give up.

MS Gets on My NervesMS WarriorMS Superhero

 

My multiple sclerosis life is filled with the unexpected

I’ve always heard that balance in life is essential. I have a feeling the person who originally penned that thought didn’t have multiple sclerosis. I can no more balance my body on a flat surface than balance my life on a daily basis. I can’t even balance my check book due to the financial strain of living with a chronic illness. A balanced life with MS sounds more like an oxymoron than a reality.

How do you balance a life that is constantly changing and where the unexpected is more expected than the chance of rain in today’s weather forecast? Each day with MS is a walk into the unknown filled with countless obstacles and booby traps. How do you balance that?

I gave up trying to plan my day in advance. Before MS, I was an organized, planned individual with my day planner in hand everywhere I went and a memory like an elephant. I remembered birthdays, holidays, anniversaries, and special occasions. I could remember anything I read, heard or saw. I even earned the nickname “Human Google” and was the go-to person when someone had a question.

Now, I have a hard time remembering what day it is, what I did yesterday and what happened on the last episode of “Game of Thrones.” I burn pizza in the oven, lose my way driving to the grocery store and forget to wash my hair while I’m in the shower. I have even been known to forget to wash the lathered up shampoo from my head before I end my shower altogether. You have no idea how many times I have gotten out of the shower, dried myself off, then realized I need to rinse the shampoo out my hair. Even my no-fail plans to remember things don’t help me remember. I lose post-it notes, forget to set alarms and can’t read my own writing.

Because of MS, I have learned that balance has nothing to do with ensuring equal time with work, fun, and family. It’s not about pleasing others or how much I can get done in a day. It’s about going with the flow and doing those things that are important to my wellness. Sometimes that means I spend the day focused on my own needs instead of work, family or fun. Sometimes that means I can mix it all up. But the important thing is to never give up when the unexpected happens.

And never forget, even the greatest gymnast in the world falls off the balance beam from time to time. Don’t stress out when your emotions get the best of you or get overwhelmed with everything that’s happening in your life. When the unexpected happens, pause, take a deep breath, then get back up and keep trying. Don’t hold onto the stress that comes with all the crazy unexpected moments. Instead, find a few smiles somewhere in the chaos to help you through what’s going on and keep going. You got this!

MS Gets on My NervesMS WarriorMS Superhero

 

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.

MS Gets on My NervesMS WarriorMS Superhero

 

Multiple sclerosis can be a lonely disease.

I don’t think the world will ever understand that we don’t need their unfounded, unproven, misinformed opinions or their self-help miracle cures, mineral water and diet plans. We simply want to know that they care. Yes, it really is that simple. A kind word, a smile, a helping hand…you’d be amazed at just how much they actually help get us through the difficult times.

We want to stop being looked at as if we are a green martian when we park in a disabled parking spot at the store because we look too young and healthy to need it. We want people to be considerate when we struggle opening a door they so conveniently rushed through only seconds before. We want a chance to rest in the afternoon without being thought of as lazy. We want to be invited out with everyone else for lunch or an evening of fun even if we have to turn down the invitation later.

Multiple sclerosis can be a lonely disease. It can isolate you especially when your mobility decreases giving you fewer options for socializing and interacting with the world around you. The internet helps to bring people into your world but online avatars, screen names and hashtags can only do so much.

When you find yourself having a down day filled with loneliness, tears and a loss of hope that anything will ever get better, don’t lose heart. You are truly not alone. My struggle may be different than yours, but I understand the depths of despair that happens because of a disease that has taken over and altered my world in ways I never thought possible.

All those hurtful comments people make and those misunderstood words of advice from well meaning friends, if they are not helpful, toss them to the side. Don’t hold on to anything that pulls you down whether that be a thought, words or even a person.

Let go of all the junk you have been holding on to—those things that weigh you down and that people have spoken about you or to you that do no good. They’re not worth carrying around. The only thing you need to be carrying is your head…carried high.

MS Gets on My NervesMS WarriorMS Superhero

 

Why I do what I do for people with multiple sclerosis?

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 this 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, I am sending you 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 may see a life of damage before you but I see someone who is gorgeous even in your brokenness.

MS Gets on My NervesMS WarriorMS Superhero