Things I wish more people understood about living with multiple sclerosis

Lately I think I have experienced every emotion imaginable. I have cried more than usual, lost my temper for seemingly stupid and even unknown reasons, and become more withdrawn than I ever thought possible simply because my body and brain won’t cooperate.

I can literally feel the changes happening in my life, so much so that if I allow my thoughts to linger on my increasing weakness and struggles, it scares the crap out of me. (That’s just me being honest.)

It’s hard to talk with people about those fears and the crazy emotions I deal with mainly because, 9 times out of 10, I am met with “Oh, it can’t be that bad” or “You just need to think more positively.” I find it to be exhausting trying to explain progressive MS to people who aren’t willing to actually listen.

Here are a few things I wish more people would try harder to understand about life with multiple sclerosis:

1. There is no cure

No matter what you read online or hear people say, there’s nothing that has been proven to eradicate the disease from a person’s body aside from a miracle. There are symptom management techniques through supplements, diet and medications that work to slow the progression down, but that’s not a cure. They are limited in what they can do and don’t work for everyone.

2. My symptoms are unpredictable

One minute I may be doing well managing the pain, weakness, sluggish thought processes, and vision difficulties. The next minute I may need to climb into bed and could be unable to move for hours. I am not being lazy. I’m taking the rest my body needs in order to function. You have to remember, my body is fighting every second of every day just to survive.

3. Things will get worse

I know you think that’s not being positive enough, but no amount of not talking about the truth will help others (or even myself) come to terms with my reality. MS is progressive. That means that as time passes, symptoms will build and my life will become more difficult. I need to prepare for the possibilities of tougher times so I’m not caught off guard when they happen. Help me to not allow my difficulties to be the only thing I focus on, but allow me the space needed to face the truth.

4. I need help

Just because I don’t ask for help every time I do something doesn’t mean I don’t need it. From my perspective, I see the burden I have become on others and know that in the future it will be an even greater need. I also know that I can’t give back like I could in times past. Those thoughts weight heavy on me at times. Regardless, never stop asking if you can help. Just the asking makes each day better because it shows me you care.

5. Please invite me

I know I am limited in the places I can go because I have to ensure accessibility and that it’s not too late or I’m not too tired, but please don’t decide for me if I can join you for a time out of the house. You may hear “no” more times than yes, but I feel included when you ask.

6. Little things matter

I know it may sound silly, but a text asking how I’m doing or just to say “thinking of you” makes any day brighter. So does picking up the mail, dropping off a meal, doing a load of laundry, taking out the trash, or just sitting for a chat. Those things matter more than you will ever know.

7. Don’t get offended

I have a brain that can’t keep information in order. If I don’t remember a special date, have trouble putting words together into coherent sentences or I’m not engaged in a conversation, don’t hold it against me. Most of the time it’s difficult to keep things organized in my head, even with lots of notes and reminders. I still confuse things.

Friends

Multiple sclerosis will weed people out of your life.

One thing multiple sclerosis has done for me is weed out the people in my life that were only there for the ride, not the journey… and living with MS is definitely a journey. When life is going good, it’s easy to find people to hang out with. Add a challenge or need peoples help on a regular basis and most of those so called friends disappear.

So many times people proudly boast about the great numbers of people they know, but are those people really friends? I can almost guarantee that a majority of them are what I would consider fair-weather friends. They will pretend that they like you when things are going well for you, but the moment things begin to turn bad they gradually begin to distance themselves from you.

I’ve noticed that people seem to be great at hanging around when they are getting some type of reward or kick-back for being your friend. You know, the free food, tickets, perks, support that you are able to send their way, but when those things dry up and you become the one in need of their continued help, they suddenly have other things more important to do.

Life has taught me a few things—I guess you could say the hard way—about people. I have learned what true friendship is…and is not.

A friend is not…

  • the long list of people in your High School year book.
  • the person who friended you on Facebook, followed you on Twitter or added you on Instagram.
  • someone who attended your birthday party or says hello to you in passing at the office.
  • the person who gives you a piece of gum or hangs out with you at the mall.
  • someone who waves at you from across the room or invites you to their wedding.

A friend is…

  • someone who is willing to go grocery shopping with you on the coldest, rainiest day of the year and allows you to change your mind ten times about what kind of cheese you want for sandwiches.
  • someone who puts up with your moodiness, hangs in there through the tears and listens when there’s nothing left to say.
  • someone you can call up at 3 o’clock in the morning to take you to the emergency room or help you with a flat tire on the side of the road.
  • someone who holds your hand when you get a bad doctor’s report and who never judges you when you have a melt down.
  • someone who genuinely wants to know how you’re doing.
  • someone who never walks away.

A friend isn’t the person who SAYS they are your friend, who SAYS they want to help, who SAYS they will be there come rain or shine…they PROVE it by the things that they actually do.

I hate to admit it, but I know I have become less of a friend in return for many of the people in my life mainly because MS has exhausted me both emotionally and physically to a point where I don’t have the energy to maintain forced interactions or unnecessary conversations.

An exhaustion so deep that I don’t have the strength to hold someone else up without sinking myself. I’m at a place in my life where I am the one in need of support. A true friend will understand that and choose to stay anyway.

Hang on to those true-blue friends. You won’t have many…maybe one or two, but they are worth their weight in gold.

Living with multiple sclerosis will weed people out of your life, but in the end you will be left with the beautiful roses, orchids and daisies. Treasure the people that treasure you.

When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares. ― Henri J.M. Nouwen

MS Gets on My NervesMS WarriorMS Superhero

 

Living with multiple sclerosis is exhausting

I think I slept a total of 3 hours last night if I were to add up all the time I wasn’t lying in bed just watching the minutes tick by. Nights like last night make for some really interesting days. You will find me yawning in the shower, as I work, and even as I eat and I still won’t be able to sleep for a short afternoon nap. It’s crazy how that happens.

Multiple sclerosis can truly be exhausting, more for some people than for others. I know it definitely is for me.

My days seem to always be filled with the longing to go to bed and my nights are filled with my brain refusing to sleep no matter how exhausted I am. It just won’t stop talking, and the random things it chooses to talk about are crazy. “Why can’t you buy a bag of Oreo middles? Why don’t penguins fly? Where is that middle of the universe, really!?”

I guess you could say the little sleep I do get at night are really just a few naps added together. I know I nap at 2 o’clock in the early morning hours while I’m longing to actually sleep. There’s something special about the 2 o’clock in the morning time. 

When my body is screaming at me to slow down and take a break, I listen now more than I did in times past. Those pauses in my day aren’t me being lazy or a sign of weakness, they are simply a necessary part of me taking care of myself.

I can’t stop the impact of MS on my day, but I can do better at handling the exhaustion that comes with it. If that means falling asleep at random times in the day then I do it. No guilt. No shame.

Know that you are important enough to pause your day too. Life is moving at such lightning speeds and it seems to demand so much out of us that rest just doesn’t fit into our plans. Don’t buy into that lie. Rest is needed and more valuable than you may realize.

Press the pause button today, hang out the do not disturb sign, and make the choice to be still in the middle of the day. Just try not to snore too loudly…or drool.

Living with multiple sclerosis is not your fault

I want to talk about a topic that many people either avoid or choose to ignore. It’s something I see very little support for yet affects over half the population of people living with multiple sclerosis as well as those living with other chronic illnesses like Parkinson’s, ALS, Lupus, EDS, Asthma…too many illnesses to even list.

If this doesn’t affect you, you can simply pass up today’s post as something to be thankful for since you are among the few who have been spared from the judgements of others. For the rest, I hope you leave encouraged in knowing that you aren’t alone and that you are an amazing person even while living with a disability.

I want to talk about faith and the disabled. I talk about it from time to time, but I think it’s needed again just watching the chatter online. Regardless of your background or beliefs, it seems there is always someone with an answer as to why you got sick and how to be healed…and if you aren’t healed then there is something wrong with you. I have been approached with that very thing more times than I can count.

I have been told everything from I don’t have enough faith, to I must have some unconfessed sin in my life, to I must really not want to be healed…all of which are untrue. If you are anything like me, once diagnosed you spent hours searching your heart for answers of where you went wrong in life only to come away exhausted and feeling defeated.

Something else that gets piled on top of all the guilt that is already weighing you down is when someone shares a story with you of how a person was healed of cancer or a heart condition…and you can have the same experience if you just live as they say. I don’t think people realize how much it hurts to have a comparison made like that. It comes across, yet again, as saying you must be doing something wrong or that you don’t have enough faith. I’m sure that’s not the intent of the comparison (at least I hope it’s not), but that’s how it comes across.

If you have had something like that happen to you and are carrying around a boatload of guilt because of it, I want you to know that there is nothing wrong with you. You didn’t cause MS due to past mistakes or terrible wrongs committed. It’s not because you lived a bad life, said the wrong prayers or don’t have enough faith. Multiple sclerosis just is. It’s a reality that can’t be explained away. It isn’t caused by a lack of faith either. It affects the best of the best, the worst of the worst and everyone in between.

Don’t hold onto the guilt others have tried to place on you or that you have put on yourself. Let it go and shake it off. I know that’s easier said than done, but I also know you can do it. Don’t believe the lies that take off running through your head. You are a beautiful person with an amazing amount of strength…more than you even realize. You are not the cause of MS in your life, never have been and never will be.

We live in a world that worships physical perfection. The helpless, vulnerable, chronically ill and impaired just don’t fit that picture perfect image. People are so good at pointing fingers and trying to place blame where it shouldn’t be, but in the process they are actually causing others harm, not help. And just so you know, they are wrong.

Maybe, just maybe, those of us with a disability are here to show the world that the “perfect” people are the flawed ones. Maybe, just maybe, we are here to teach others how to love and truly be compassionate without judgement. Maybe, just maybe, we are changing the world through our suffering…one tear at a time. Maybe, just maybe, the strength we carry today is helping to build a bridge for those who will follow tomorrow. Maybe, just maybe.

Disabilities are a part of life. They have nothing to do with how much faith someone does or doesn’t have. They have nothing to do with how much someone prays, reads their Bible or takes part in worship. They do, however, have everything to do with being human. Shake off those defeatist thoughts, take a deep breath, and hold your head high today. You are an MS Warrior.

“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” – Fred Rogers

MS Gets on My NervesMS WarriorMS Superhero

 

brave

People may never see your struggle with multiple sclerosis…you are brave even then

The first thing I do every morning is pour myself a cup of coffee and sit in my favorite chair with my laptop to write my morning thoughts for you. If someone would have told me several years ago that my thoughts about my life with multiple sclerosis would be read by people all around the world, I would have probably looked at them crosseyed and lopsided.

I never imagined that my words, put together so early in the morning, would matter…let alone make sense. Yet somehow they come together and bring hope to all who read them.

Today, I feel such amazing and unbelievable thankfulness for you. On days when I’m struggling, just knowing that you are sitting there across the miles reading my rambling words, tender encouragement and quirky sarcasm, warms my heart and gives me a smile that makes each day worth waking up to.

I smile because I know that there’s someone else out there just like me. Someone who at times feels overwhelmed, sad, exhausted, and alone but, who just like me, puts their brave on and greets the day with determination and courage. No one will ever fully understand the battles we face each day and the uncertainties we deal with, many before we even pull back the covers to get out of bed.

People will never hear the arguments I have with myself as I look over the list of things needing to be done in the day knowing full well that my body is ready to collapse. They will never understand the strength it takes to hold on when I’m feeling beaten down and worn out. They will never see the tears that leak through the smile I’ve carefully put in place. They will never know of the ache in my heart as I have to cancel plans I was looking forward to being a part of. They will never grasp the full extent of the challenges I face moving around in a world that is not fully accessible to someone in a wheelchair.

Some days are good and some, to be honest, are downright terrible, but knowing that others are facing similar challenges makes the load considerably lighter, and my world seems a bit less crazy and more manageable.

If there is one thing I could say to you today that will help bring some ease to your heart and the struggle you are facing, it’s this…

You are an incredible, amazing, beautiful individual with a future still ahead of you that is filled with endless possibilities. Your life hasn’t ended because of MS or because of the progression you are experiencing.

I know at times you think that things are over for you, but you really do have great moments ahead that need to be experienced and that you are to be a part of. Many of them are even things that you haven’t even dreamed of yet. Good things. Great things. Amazing things. And one day you will look back on today and be thankful that you kept fighting.

You are brave, even when you don’t feel like it. Even when you are weak and tired. Even when all you can see in front of you is a life filled with uncertainties, struggles and pain. You are brave even then.

MS Gets on My NervesMS WarriorMS Superhero

 

Sometimes living with multiple sclerosis…all I can do is sit and cry

I remember as a kid taking time to lie in the grass, look up at the sky and discover a world of cloud shaped wonders. Once I saw a bunny eat an elephant, then it pooped out a bear. It seems the impossible can happen with a little bit of imagination and a sky full of clouds. I mean, who ever heard of a bunny eating an elephant before? But I saw it happen right before my very eyes.

Those carefree times don’t happen so much any more. I’m not as prone to pause life to look up at the sky in search of familiar shapes…but I should. I should slow down to enjoy life more and to allow myself to be me. We all should. Do you realize this very moment can never be refunded or returned? It has to be used as is, right now.

That’s not always so easy to do when dealing with a chronic illness. Especially when the challenges facing you seem bigger than life itself. The weakness in my legs and right arm have increased by a gazillion times over the past month. I am finding it harder and harder to hold onto things and the pain that accompanies the muscle tightness in my legs is killer. Like scream-as-loud-as-you-can-because-it-hurts pain. I do believe in allowing yourself the freedom to express your emotions whether they be tears, laughter or screams.

I remember one day sitting in my car in the parking lot at the grocery store screaming. I was still able to walk, but by time I had finished shopping and made my way back to the car, I was so weak that all I could do was sit and scream. So I did. I’m sure the shoppers passing by thought I was completely nuts. But I didn’t care. It helped me vent my frustrations. Then I took a deep breath, wiped away the tears and drove home feeling much better.

When facing difficult times, I have found some of my most therapeutic moments have been when I have taken the time to pause and allow myself to simply be. To allow the emotions to spill out for a moment, then take time to notice life like I did as a child. To look around at all the wonder that there truly is in life. To enjoy the tiny little kisses life gives us: the flowers swaying in the wind, the sound of children laughing, the smell of a freshly cut lawn. There’s a pause button in every day, you just have to choose to use it.

No matter what you are facing, whether it be difficulties in your marriage, relationship troubles, problems at work, stress over finances, or simply having an “MS is kicking my butt” kind of day…pause and take time to simply be! Twenty minutes…that’s all you need…just twenty minutes to yourself. Those twenty minutes will be worth the investment. Trust me.

Now I’m off to spend some time curled up in my favorite chair as I sip some coffee and watch the sun come up. It’s a new day filled with new possibilities.

What’s sick supposed to look like?

Could someone please tell me what sick is supposed to look like. I am apparently doing it all wrong. It’s amazing how many people tell me that I look good. I don’t know whether to be grateful that they care or sad that they don’t even attempt to understand my struggle. My outside is nothing but a costume covering a body filled with chaos. I must be wearing it well.

If you could take a look at my insides, my body is screaming at me all day long. From the moment I wake up until the time I go to bed I fight a battle. Sometimes I receive blows that send me toppling to the floor. Sometimes I hurt. Sometimes I cry. And sometimes I laugh so hard that I hurt and cry all at the same time. It’s not an easy existence, that’s for sure.

I don’t think the world will ever understand what we go through from the moment we wake up until the time we go to bed. Right now I am sitting on the couch hoping for the vertigo spinning in my head to find a place of calm, for my thoughts to collect themselves, for my hands to stop trembling, for my eyesight to see the world around me clearly, and for my body to gain some strength. There must be an energy zapper in my house somewhere but I can’t seem to find it.

When you are surrounded by people who just don’t get it, don’t lose heart. At times, multiple sclerosis can be a lonely disease to deal with. I hope you know that you aren’t alone in this fight. We are all in this together.

Take any hurtful comments people have made about how you should be living with MS and toss them to the side. Unless they are living in your body they just won’t get it. Don’t hold it against them. Most of the time I don’t get MS either, and I live with it.

Hold your head high today, that’s the only thing you need to be carrying…and wear it well. I’m proud of you.

MS Gets on My NervesMS WarriorMS Superhero

 

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