Multiple Sclerosis makes life hard

Lately it’s been extremely difficult getting my body going in the morning. Now mind you, I’ve never been a morning person, but this kind of slow going is different.

For instance, take this morning…I woke up and lay in the bed a good hour just contemplating getting up. I didn’t throw the covers back immediately as if ready to conquer the day like I have done countless times before. It felt more like the day had already conquered me, and I hadn’t even gotten out of bed yet.

The energy it takes for me to move my legs, let alone use them, seems non existent. I can usually take about 5 steps before needing a break, but even one step seems impossible today. I can’t even talk them into moving across the mattress on their own.

My hands aren’t cooperating either. I’ve punched myself in the face twice already just pulling on my blanket. Then there’s my uncontrollable right hand which has a mind of its own as it shakes and jitters about.

As I lay here in bed, in my mind I have already canceled all of the plans I have for the day.

That trip to the store, it can wait until tomorrow. That dirty bathroom, it will just have to clean itself. Laundry? That’s a nope. My morning get together with friends, it will have to go on without me. Even getting my morning cup of coffee has been put on hold.

I am not a quitter but I have to admit, sometimes my body wins the argument before the argument has even begun. Sometimes my inability to do certain things is not a mind over matter concept but more of a what’s-really-important kind of thing.

I have simplified my life and my surroundings all because of multiple sclerosis. It kind of has this way of weeding out the unnecessary in life…whether that be things or people. But you know, that’s not really a bad thing. As least I know that the people in my life today are genuine and real.

MS may get me down, and at times keep me down longer than I would like, but it still hasn’t won. I am going to keep pushing through the struggles I find myself facing, and if need be I will pause for awhile to catch my breath, but I won’t quit.

MS makes life hard, makes everything hard, but don’t ever let it cause you to give up. You are too valuable, too important, too needed, to quit. Pause, take a breather, nap if you must, but never, ever, ever give up.

Today for me may already be cancelled, but it’s not over. There is still a lot of time to do the impossible. The same goes for you. You can’t give up now.

sad

It’s true…Multiple Sclerosis is painful

Living in a constant state of pain is grueling, exhausting and tough…really tough. Someone who hasn’t been in that position will never grasp how difficult it actually is to function during a time of blinding pain, no matter how much you try to explain it to them. There is just no way to put that kind of thing into words.

When pain becomes that overwhelming, you find yourself creating your own methods of mind over matter to try and cope. Sometimes they work, but sometimes the pain becomes so intense that you can’t seem to find any coping mechanism to bring relief. That’s when the tears flow, the mood swings happen and you pray with all the strength you have left inside of you hoping that everything will simply stop spinning out of control.

That has been my world these past few days. The pain has been so intense that I found myself hibernating…more for my own sanity than anything else. I know my fuse can be short when my body is screaming at me with that much intensity. I wouldn’t want anyone to be on the receiving end of a faulty mood swing during an I’m-trying-to-cope moment in my life.

Now don’t get me wrong, I truly am a wonderful, nice, calm person…but when I’m hit with excruciating pain that just won’t let up or stop, the monster hidden deep inside of me rises up. I would never be cruel, but I am more apt to say something that might hurt someone’s feelings.

Anyone who says that people living with Multiple Sclerosis don’t experience pain, is full of it. Oh, how I would love to give that person a glimpse into just how painful it can be.

But you know, although the pain is horribly unbearable, I find that somehow the strength I need to push through during those times comes. I eventually get through it and I gain deeper compassion for others facing similar times of pain in the process.

Before MS, I really didn’t get it. Life wasn’t as meaningful or as precious to me as it is now. I took way too many things for granted: people, a good job, strong friendships, laughter, and the freedom to do just about anything I wanted to do.

Now, because of Multiple Sclerosis, I live my life in a constant state of uncertainty and pain. Physical pain and emotional pain. Yet now I find myself savoring every memory and moment I have…even the painful ones. I no longer take life for granted. I value each day, each sunrise, each raindrop, each tear.

There’s no time for petty arguments or silly whining. There’s no point in trying to one up someone just to make myself feel important. There’s no need for meaningless relationships or power struggles. Each moment I’m given, each person I meet, they’re a gift I’ve been given and something I shouldn’t waste or toss aside.

Savor life. Enjoy every moment. Live today regardless of how terribly tough it may be. You are here, alive, for a reason. You matter. You have a purpose. You are loved, valuable and someone that I’m thankful to call friend.

You are a survivor and a warrior. You are truly an amazing person. Never forget that, even in the pain.

bear

I never asked to get sick

For so many, Multiple Sclerosis is filled with times of intense struggle followed by periods of calm. During the calm a new normal is found that consists of changing how everyday tasks are done and limiting those things that are not as important. Meds, vitamins, diet, exercise, and working to stay as stress free as possible helps to manage the symptoms and life goes on. Years pass by. Relapses happen and with each relapse a new normal is found and the process continues.

I wish I was one of those people. I wish I could say, like so many do, that I have had MS for 20 years and am still going strong or that it’s been 10 years and my symptoms are still the same, but I have never had a period of time when something wasn’t changing. I’ve never really known a relapse. MS has been fast progressing and aggressive for me. I know I’m part of a smaller population of MSers, but I think it’s important for the world to know that not all MS is the same.

Sure, I am encouraged by the stories of people with MS who advance in their careers, run marathons, and are seen on TV giving a face to MS. What bothers me are the numbers of people that think MS isn’t that bad, after all just look at so-and-so on TV or watch this video I saw of how someone follows a special diet and now lives symptom free.

We have done a fairly good job at informing the world that MS exists, but not so good at explaining that it can be cruel, painful, debilitating, and that a cure has not yet been found. Yes, I agree that not everyone will end up in a wheelchair unable to manage life on their own, but it happens and we have to be sure we are sharing both the good and the bad with the world so they know the truth and not just the positive, brave side we like to portrait. Being positive doesn’t mean denying what is going on in your life and hiding those things from others. It’s acknowledging the ugliness of MS and choosing to push through anyway.

I never asked to get sick, to have to quit my job, to live day by day with struggles. That was never a part of my long term goals in life. I work hard every day to stay positive, encourage others and even encourage myself. But you know, some days I have to talk myself into getting out of bed. It’s true. I have even been known to argue with myself as I work up the strength to get a shower to start my day.

It’s hard. But even in the impossible, I see good things around me. I see people smiling because I said something funny. I see strangers extending a helping hand when I’m struggling to get the door open or needing help to get something from the top shelf. I see love in action and joy in some of the strangest moments.

No matter how difficult your day is, look up from your struggle and take a deep breath. What are some things in life that make you smile, that warm your heart, that bring you joy? Hang on to those things today. It won’t make the day easier but it will make the load lighter. MS is different for everyone, but pain is pain, struggle is struggle, change is change. Today is not a “give up” day…it’s a “get up” day.

You are not alone

A life with Multiple Sclerosis can be a physically challenging, emotionally draining, round-the-clock exhausting and lonely job. Everything we do takes an extraordinary amount of effort to complete and some things become nearly impossible to do causing us to get really creative in finding an alternative to our otherwise normal way of doing things.

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 just 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, 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.

Keep hanging on. It’s okay to feel like 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 ways of coping with all the changes. I can guarantee you that.

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.

Real friends

True friends are a rare thing for the chronically ill

Life was good before Multiple Sclerosis. I had great friends. We would spend time together on the weekends going out to eat or bowling, and in the summer we would always plan hiking trips through the mountains. When MS became a part of the picture, those nights out and trips dwindled. It got to where I wasn’t even being invited to dinner anymore, they would just go without me. It made me downright mad to be excluded like that. I wanted to scream at them saying, “I have MS, I didn’t die.”

Amazingly, you discover who your real friends are once a challenge arises. They will either stand by you and hold you up or they will walk away dropping you like a hot potato. If they choose to walk away, let them. You don’t need anyone pulling you down. MS is doing a good enough job of that already.

For those friends wanting to understand a little more about how life changes for a person with MS, I’ve listed a few things here. Maybe they will help you to understand MS and help you to be a better friend in the process.

1. Sleep is important to us.

We need to go to bed early. When I say need, I mean NEED, and when I say early, I mean EARLY! Our bodies wear out faster because they are working harder to do just about everything. The simple act of walking across a room exerts twice the energy of a healthy person doing the same thing, if not more. We have to think to walk. It doesn’t come naturally like it does for you. Every step includes a thought process about how to pick up the foot and where to put it back down. Now, add to that all the other things you do in a day. Many times we will be in the bed before the sun goes down, which means we may not be able to have a night out with the gang or stay up to watch a late night movie on the couch. When we do sleep, the time is sporadic which makes us even more exhausted the next day. Sleeping through the night without bathroom breaks and being awaked by pain is a rarity. So, if we say we’re tired, we are “I haven’t slept in days and every muscle, bone and cell in my body aches” tired.

2. Schedules are planned around treatment and sleep.

No longer are we able to plan ahead for a special event. Our meds and sleep patterns changed that the moment MS became a part of our life. If we are out enjoying the night and have to leave early, don’t get mad or think we are being unsocial for being the first person to slip out unnoticed. When our bodies are screaming at us in pain, and our exhaustion has hit an all time high, we would rather be at home in the comfort of our PJs so we can hibernate on our own couch. This way, if we have a moment when things get too intense and we shed a tear or two, we don’t have to explain what’s wrong for the hundredth time. Just know that if we ever say “no” or have to cancel last minute plans, it’s not because we don’t want to be a part of what’s going on or because we are mad at you. Our bodies just won’t let us join in.

3. “Just come over and sit” is not as easy as it sounds.

For one, we have to get ourselves dressed and make ourselves presentable which exerts energy. Then we have to drive through traffic to get to your house which can be dangerous, especially if we have trouble with vision, numbness in our legs, dizziness or fatigue. So, although coming and just sitting at your house sounds simple, it’s not. It becomes even more difficult when we have to leave and drive back home, because by that time we are so tired that driving can be scary and unsafe. It would be so much easier if you were to come to us. And not a loud party kind of come over either. There is a time and place for that, but most of the time we just want to know you care. Having a cup of coffee or tea for an hour or bringing lunch over would be welcomed and help brighten our day.

4. Simple things suddenly become difficult.

Laundry, cleaning, cooking, washing the car, vacuuming, making the bed, going to the store: they all sounds like simple things, right? But they’re not. All of a sudden we find ourselves struggling just to make the bed in the morning. What normally would take 10 minutes becomes 45 minutes. Our energy gets used up fast and our muscles weaken quick. All those things normal people do, we struggle with. We look around the house and want to cry because we have had to neglect things we normally would take care of. You know what would be the greatest thing of all? For you to volunteer to come and help us tackle the laundry or the scrubbing of the toilet.

5. We get tired of explaining the same thing over and over.

We understand that you don’t get it and that much of our pain you can’t see. We realize you can forget from time to time that we are hurting and suffering on the inside. But please, as a friend who wants to be a part of our lives, take the time to read up on MS so you can be informed. Be our biggest supporter: the person that stands up for us and fights for us when others point and stare or are saying stupid things and being rude. Hold our hand through the bad days and help us find our smile when we lose it.

6. Don’t judge us for our choice of treatment.

We are the ones living with MS and, surprisingly enough, we have researched more in depth about MS than most people because again, we are the ones living with it. We would like nothing more than to one day wake up and hear that MS is cured. Until then, we have decisions to make about a treatment plan. Those decisions are ours to make, not yours. Please don’t judge our decisions. Treatments are a trial and error kind of thing. They won’t cure us. They just delay the progression. Let us try what we feel is right for us, and if it doesn’t work, help us to make the next big decision for treatment. Leave the judgements and finger pointing elsewhere. We don’t need condemnation or criticism. We need support and care.

When it comes to friendships, we need them, we want them, we long for them, but we won’t be able to be the friend you have known in the past and we need you to be okay with that. MS has caused our lives to change. We would love it if you would help us through that change by changing with us. We know it’s not easy. Boy, do we know it’s not easy. But know that living with MS isn’t easy either.

True friends are a rare thing for the chronically ill. It takes guts to stand with us. Thanks for having the guts to stay.

Each morning I wake up to a fight with Multiple Sclerosis

Sometimes thoughts about my possible future get carried away causing me frustration, anger, loneliness and fear. I know they say not to keep things like that to yourself, but how do you explain thoughts and feelings you are having about a disability to someone when you don’t even understand them yourself?

Now mind you, I don’t live in a constant state of hopelessness or fear, but it’s something I fight regularly. That’s just me being real and telling it like it is.

Each morning I wake up to a fight. Some mornings I punch multiple sclerosis right in the face knocking it out cold. What a victorious feeling it is to wake up to a win in the ring. Those are amazing moments. But regardless of my strength and skill—something I’ve gained over the years—MS has been known to dodge my punches and come in with an upper cut that sends me to the floor seeing stars. It’s those days when hopelessness becomes a reality.

I know people care about me and about what I’m going through, and for that I’m extremely thankful, but sometimes the feelings of hopelessness overwhelm me to the point of despair regardless of who’s standing with me. I admit I have wanted to run away more as an adult than I ever wanted to as a kid. But where do I run? There’s no place to hide from MS…or the world for that matter.

If you have ever felt that way, I want you to know that you are not alone. When I’m having a tough time with MS or life in general, I find journaling helps. It’s an easy way to vent…getting all my feelings out without anyone talking back or misunderstanding what I’m trying to say. Maybe talking to your dog or a goldfish would be just as therapeutic. I haven’t tried that but, hey, anything’s worth a shot.

How do I journal? I take time each morning to write my thoughts down. I choose to write without stopping regardless of grammatical errors or confusion, no matter how random that may be. I simply allow my feelings to spill out onto the page. I rant, vent, and scream in written words. It used to be easy to do that with a pen and paper, but now I use dictation software on my computer to do the writing for me since my hands don’t work so well.

There have been times I have gone back to read what was written and sat staring at the page in confusion because the words made absolutely no sense. Not because the software messed up writing things out, but because I was talking in circles and going down rabbit trails. Regardless, I feel lighter and that’s what matters.

You would be amazed how much it helps to voice things and just get everything out. It has been better therapy than anything I’ve ever done. At least it’s been working for me. Maybe it could work for you too.

There is life outside of MS, I promise you. You won’t always have bad days even though at times it feels like it. Don’t let your thoughts ruin your day. Take charge. You hold the reigns and get to choose what hangs around in your mind.

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/