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 happen 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.

I have found that if I allow someone to speak their opinion, it leaves them happy to have contributed to my life…even if their advice is so full of holes that it wouldn’t hold a teaspoon of water, but once they say what they have to say, I let it go. I have to or I would go bonkers.

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.

If you want to find out who your real friends are, get diagnosed with a chronic illness

The world is full of selfish people. Society has become so consumed in their own day-to-day search of notoriety and importance that they have ignored the countless hurting people all around them.

People with disabilities go unnoticed and many times pushed aside as bothersome. Ears have been closed to their cries and eyes have been shut to their pain. Many are too busy trying to get their 15 minutes of fame from social media to be able to take a break and truly care.

I have always told people, “If you want to find out who your real friends are, get diagnosed with a chronic illness and see who sticks around.” It’s sad to say, but oh so true. Living with a chronic illness brings with it this uncanny ability to weed people out of our lives. It’s sad and shouldn’t be, but it happens to all of us.

Invitations to parties dwindle, offers to help dry up and loneliness settles in. We find ourselves struggling to find purpose in the midst of a life of pain. It’s not easy waking up each day to a fight. Tears come way too often and hopelessness tries its best to take us down.

We need to use our experience to help comfort others and offer support to those going through that same thing. Don’t walk around with a cocky attitude telling others to just get over it and suck it up while spouting out that while you have MS, MS doesn’t have you. Instead, extend a hand to wipe away the tears of those whose hearts are breaking and whose lives are falling apart.

Will you do something to reach out to someone who feels all alone? It could be because of a new MS diagnosis or simply a storm that is overwhelming them at the moment. Will you be different than society and walk in when everyone else walks out?

People are hurting everywhere and we can do our part to help even if it’s through something as simple as a kind word, a smile or an email saying that you care.

Share the hope you have with others. It really does matter. And besides, you may need someone to do the same for you tomorrow.

The truth from a person living with Multiple Sclerosis

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

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

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

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

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

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

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

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

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

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

Read today’s post at MS Conversations:

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

How do you live with Multiple Sclerosis?

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

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

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

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

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

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

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

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

Multiple Sclerosis isn’t the smiling face you see in brochures

As a kid people would ask me, “what do you want to be when you grow up?”

My answer would change often, but I would mostly respond with Teacher, Scientist, Minister or Musician. Never once did I even think of saying I want to be a disabled person living with a chronic illness. That was never even a thought.

But now, after multiple sclerosis, life is different. I’m no longer the invincible, untouchable kid I once was. I grew up and life became real.

You may see pictures of me smiling, but the truth is my nights are also spent crying. That’s right, MS isn’t the smiling face you see in those brochures or the victorious athlete crossing the finish line in those advertisements. It’s everyday people like you and me facing weakness, cognitive difficulties, bladder problems, tremors and numb body parts.

I want the truth about MS to be seen by the world. I want to hear about people with MS that are facing hell, yet making it. That’s real life with MS.

I want to see the struggle. I want to know about the problems. I want to meet the courageous, the brave, the unstoppable, the true warriors.

I want to hear how lives are being lived in spite of a horrible disease.

I want the world to know about the sleepless nights we face, the embarrassing moments we endure and the emotional chaos we go through every single day.

The world doesn’t need any more brochures covered in rainbows and smiles. Sure, we smile and enjoy life in spite of our disease, but there is a lot hidden behind our smiles that the world needs to know about.

To the advertisers, the drug companies, and the TV producers: Don’t cover up our struggle. We’ve been through too much, come through hell too many times, to have our battle scars hidden away just to make a few people more comfortable with the effects of MS. We aren’t comfortable so they shouldn’t be either.

To the doctors and nurses: remember that MS isn’t easy. That the things you say, the way you help, the care you give really does matter. That just a simple “I’m here to help you any way I can” matters. That listening to our tear filled emotional breakdown really does help. That even though you may feel helpless in coming up with a solution to ease our pain in the short time you see us, we face those same fears and feelings every moment of every day. Please be patient with us, your patients. Sometimes you are the only ones we talk to about what we are going through.

In a perfect world, MS wouldn’t exist. There would be no pain, fears, difficulties or struggles. But we live in a world filled with brokenness. It’s okay to cry, fall apart and actually feel afraid. That’s part of being human. That’s a part of living.

Allow yourself to feel, get angry if you need to, cry if you must, then wipe your tears, hold you head up and conquer the day. You are a warrior that may be weary in the fight, but even on your worst days you are still fighting.

Never doubt, even for a minute, that you are special. You are amazingly special and incredibly important. Hold your head high today. You got this!

Dare to Be
When a new day begins, dare to smile gratefully.
When there is darkness, dare to be the first to shine a light.
When there is injustice, dare to be the first to condemn it.
When something seems difficult, dare to do it anyway.
When life seems to beat you down, dare to fight back.
When there seems to be no hope, dare to find some.
When you’re feeling tired, dare to keep going.
When times are tough, dare to be tougher.
When love hurts you, dare to love again.
When someone is hurting, dare to help them heal.
When another is lost, dare to help them find the way.
When a friend falls, dare to be the first to extend a hand.
When you cross paths with another, dare to make them smile.
When you feel great, dare to help someone else feel great too.
When the day has ended, dare to feel as you’ve done your best.
Dare to be the best you can –
At all times, Dare to be!
― Steve Maraboli

The ABC’s of a life with Multiple Sclerosis

Life with Multiple Sclerosis is filled with some crazy, unexpected and painful moments. It’s not a disease for wimps, that’s for sure. Here are some of the basics of living with MS.

A – awareness
There is still a huge lack of understanding by the general public about MS. We are not contagious, we didn’t do something to cause MS in our lives, there is no known cure, and it’s not all in our head…well actually it is. Our brain MRIs prove that.

B – brain lesions
That’s just a fancy way of saying that our brain has wounds inside. Some of them heal well while others leave nasty scars that disrupt the communication along the nerves that make our body work. That’s the reason we do the things we do…most of the time. Some times it’s just who we are and has nothing to do with our brain.

C – cramps and spasms
Our muscles tighten up causing us great discomfort and pain. Any muscle can be affected from those controlling our hands, to the ones around our ribs, to those that move our big toe. Think of it as a constant Charlie Horse, just not in the leg.

D – drunk walking
We have full intentions of walking without bumping into things but it seems the walls, floors, tables and chairs have become our friends. They need some love and appreciation from time to time and we just so happen to be the ones to give it to them.

E – eyesight problems
Our vision can become blurred, doubled, dimmed or even gone. Sometimes it’s even accompanied with pain and color loss. So if you see us wearing uncoordinated clothes or find us making funny squinting faces, no need to stare…that’s just how we roll.

F – falling down
We are professionals at falling. It’s our specialty. We can fall up a flight of stairs, getting out of bed, and even on flat surfaces. If there was an Olympic sport for falling, we would be gold medal winners for sure.

G – good days and bad days
We don’t plan them…they just happen. Some days are good, some are bad and others are downright terrible. That doesn’t change over the years so if you ask if we are feeling better we don’t know how to respond. How we feel can change from day to day, hour to hour and minute to minute. Feeling better? Compared to what? Yesterday? This morning? Ten minutes ago?

H – heat sensitivity
Trips to the beach on a hot summer day, time in a hot tub or sauna, or even blowdrying our hair causes our symptoms to worsen. Air conditioning is a must. We are thankful for its inventor and would give him an award if we could.

I – IV steroids
Oh, the dreaded round of IV meds. Most of the time they help to lessen the inflammation in our brain and spine, but they create such terrible insomnia while we are on them that we may end up scrubbing the floors, power washing the house, detailing the car and painting the basement. Just don’t look at us the wrong way because they also cause terrible mood swings and have the potential of turning us into the Incredible Hulk.

J – jitters
We make a great omelet and can whip those eggs to perfection with our hand tremors. If only we didn’t keep dropping the whisk in the process.

K – krazy mixed up words
Toss our vocabulary into a blender and let the words get chopped to bits. Now dump them out and try to form a sentence or even a word. At times that’s about how easy it is for us to find our words.

L – laughing through the tears
We cry and cry often (most of the time you don’t even know it), but we laugh too and many times you will find us laughing through the tears. That’s not a sign of weakness. Our tears are just some of our strength leaking out. But don’t worry, give us a hug, spend some time with us or help us out when we need it…that’s all we need to be replenished.

M – memory problems
Sometimes it’s hard to remember schedules, appointments, names and even what someone said 5 minutes ago. Thoughts get lost more than our car keys. If only we had a “clapper” to help us find them.

N – numbness
Many parts of our body go numb much like when someone crosses their legs and their foot falls asleep. Oddly enough, we feel pain through the numbness. If only we could get them to wake up. We would gladly offer them some caffeine or an energy drink if it would help.

O – oops, oh well
Asking us to catch something when you throw it to us, and us actually catching it…now that would be something to cheer about. See, we get excited over the little things.

P – pain and more pain
Our pain isn’t because we hit our thumb with a hammer. At least that kind of pain you could see. No, our pain shifts and changes throughout the day and at times can become unbearable. So much so that even wearing socks or covering up with a sheet in the bed hurts.

Q – quiet please
Loud noises can be super annoying and seem to become amplified in our heads, so if you see us sitting in the quiet…we like that. Loud parties, restaurants and get togethers are taken in moderation so we don’t overwhelm our nervous system.

R – relapses happen
It’s just a part of life with MS…it’s called a progressive disease for a reason. It may take years for a relapse to happen or only months…though we pray for it to be years.

S – swallowing difficulties
It’s amazing how many muscles and nerves coordinate to do something as simple as eating. One nerve out of whack and we could swallow wrong. It takes concentration and effort to chew and swallow. More than most people realize.

T – tingling
Pins and needles is what we call it and they don’t go away no matter how much we try to massage that area of our body. It’s something we learn to live with and try to ignore. But ignoring that kind of thing is about as easy as ignoring a spider crawling across your big toe.

U – UTI
No, that doesn’t stand for Under The Influence although we very well could be with all the meds we take. Our bladder causes us difficulties. It’s not something we like to talk about, but it is a reality of what we have to deal with. So when we say we have to go to the bathroom, don’t stop us. We may run you over in order to get there in time.

V – vertigo
We don’t need to buy a ticket for an ocean cruise, we have one in our head every day. If only we could get a few Hawaiian shirts, drinks with little umbrellas in them and an all you can eat bar to make it feel more festive.

W – wheels, canes and braces
Oh the fun we get to have pimping out our walkers, wheelchairs, canes and braces. Now if someone could invent a zapper that we could use on people when they are rude to us because of our disabled parking tags or slow moving we’d be in business.

X – X-rays and MRIs
The rat-tat-tat noise of an MRI machine can be slept through. We know that from experience. Our medical charts are filled with images of our insides. I guess you could call us Super Models…we are so photogenic.

Y – yawn, yawn, yawn
We have a constant yawn from the moment we wake up until the time we go to bed. Being able to wake up rested is a fairy tale from a land far, far away that no one has found yet. It must be around the corner from Neverland or next to the pot of gold at the end of the rainbow.

Z – zings down the spine
If you want to know what it feels like to stick your finger in a light socket, just ask. Looking down at our toes…zing, there it goes. A lightning bolt down the back of the neck and all the way to our toes. Maybe that’s what helps to light up the light bulb over our head when we get a bright idea.

Fight on, oh mighty warrior

Multiple Sclerosis is weird. You can wake up one morning feeling okay and the next wishing you didn’t wake up at all. It messes with your body, your emotions, your relationships, and your job. It has this way of touching every part your life.

MS is definitely not a disease you can keep to yourself. We try though…don’t we? I know I do. I try hard to keep it neatly contained in its own little space but it doesn’t seem to stay where I want it to.

If only people could see inside my life for a day and experience not just the physical symptoms of MS, but the emotional, relational, and financial challenges it brings along with it.

MS is something I wouldn’t wish on my worst enemy, but it is something I wish everyone could experience for a day so they would have a bit more understanding, compassion and patience with me. This way, when I’m having a bad day, I don’t have to work so hard trying to explain myself and having to convince people that my pain and struggles are real.

Today I woke up and my hands wouldn’t cooperate. The tremors were a bit more intense than I have experienced in times past. As a matter of fact, my entire body feels like an earthquake has exploded in 10 different directions. Nothing is working as it should. But I peck out my thoughts and send my heartfelt message of encouragement to you because I don’t want anyone to feel defeated or hopeless. I don’t want anyone to give up.

If I can do it, you can do it. We got this.

You are my hero because you fight battles every day that no one will ever see or know about. You wield your sword and fight gallantly even when your knees buckle under you and it’s hard to hold your head up. Never doubt, not for a moment, your strength because even on your weakest days you are strong.

Fight on, oh mighty warrior. Fight on!

Fight with me not against me

All right, let’s say this once and for all and get it all out in the open.

I have Multiple Sclerosis. It is an incurable chronic progressive disease. There are some great strides being made towards finding a cure, but at this time there is no known cure. This disease will continue to worsen in my life as the months and years pass by. It is extremely unpredictable so it’s possible it could take an entire lifetime for my body to progress to a point of causing me major problems or it could happen tomorrow.

Google doesn’t have all the answers either. It is a fallible resource filled with more ideas than facts. All those cures you keep telling me about are opinions of someone who doesn’t have enough facts to back up their claims. Some of the information is even falsified in order to benefit the person declaring the cure. Opinions without facts are not going to end MS. Some of the things you read about may help someone manage a few symptoms, but nothing is a cure.

Another thing…I didn’t cause MS in my life. There is no past mistake, sin or wrongdoing that made me develop it. If that were the case then the entire world would be living with MS because no one is perfect. That’s right…I’m not perfect and neither are you.

I didn’t eat the wrong foods, drink the wrong drinks or take the wrong meds to cause it either. MS has been around for hundreds of years, way before GMOs, aspartame or food in a can. Again, if those things caused my MS, then the entire population would have it because everyone has been exposed to them…even you.

It doesn’t matter how much you ignore MS, deny its existence or pretend it doesn’t affect me, MS is real. Let me say that again…Multiple Sclerosis is REAL! I know because I live with it every day. It’s not all in my head. Well, on that one we can both agree because my MRI would validate that point. My brain lights up like a Christmas tree on the scans because it’s covered in scars. Those scars are my battle wounds as my body fights itself. That’s right, signals got crossed somewhere along the way and my body thought my own body was the enemy.

Each morning I wake up swinging because I’m a fighter not a quitter. Some days I’m strong and can tackle my to-do lists and work with gusto. But more and more I find myself struggling and needing your help to do everyday tasks that shouldn’t be a problem even for a 3 year old. That’s just how MS is. It’s unpredictable.

I need your support, love and care not your judgments, opinions and criticisms. I will fight MS until my dying day…that’s a fact. But if you are going to be a part of my life then I need you to fight along side me, not against me. My life hasn’t ended because of MS, I just need more help along the way.

Living with a chronic illness can be extremely lonely

I think one of the hardest things about living with a chronic illness is the pressure from certain people to just get better. It’s almost as if they think I have this secret power tucked away in my sock drawer that will rid my body of all the symptoms, difficulties and struggles MS is causing in life, but for some unknown reason I choose not to use it.

When I am unable to join in on the outings, parties, dinners and shopping trips people are taking part in, the vibe I get at times from them is one of doubt that things could actually be “that bad.” I can almost see the thought bubble above their heads as they wonder how it is I can go from feeling okay one minute to feeling like crap the next.

The best thing anyone could ever do for someone living with a chronic illness is to allow them to decide how they’re actually feeling and what they are capable of doing. I like it when people leave it up to me to decide what I can and can’t do, and are okay with my decision. After all, it’s my body…it’s my life. I should now how I’m feeling.

Those that love me enough to give me the option to choose and are okay if my decision is different than what they want or planned for…those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel.

Living with a chronic illness can be extremely lonely and amazingly enough it’s possible to feel that way sitting in a room all by yourself as well as in a room full of people. Sometimes you just want someone to sit by your side and simply be there, to give you a hug, to listen, to care.

When you find yourself sitting in a puddle of your thoughts wondering where everyone has gone, know that there are others with MS who understand. We may be separated by miles and miles of distance and separated by oceans and seas, but we are connected through wires and keystrokes. We are in this together. Sending a virtual hug your way today.