I may be weak but I’m not defeated

Each day I wake up to a fight with multiple sclerosis. Some days I have the strength I need to come up swinging but some days I don’t. MS has definitely thrown me some curve balls and sucker punches over the years. Sometimes it seems as if MS gets the upper hand as it blindsides me with a blow I wasn’t expecting. Today is one of those days.

It’s a day of wobbliness, fatigue, weakness and pain. Yet even on my worst days, when I feel as if I’m losing the fight, I find the strength I need. Not because I’m a super MS warrior, but because deep down inside I have determined that MS is not going to seize the day. I have decided I won’t quit or wave the white flag of defeat. I may be weak but I’m not defeated.

This war called multiple sclerosis is filled with daily battles. Some of those battles are easy and some can be really, really hard. Some days MS wins, but many days I win. When you are at your lowest and feel so bad that you’re ready to throw your hands up in surrender; when you don’t have the strength to punch, jab or even make a fist; take the time to rest up instead. You don’t have to stay in the heat of the battle every minute of every day. There is a difference in resting and quitting.

If you’re anything like me, sitting around doing nothing can make you feel unproductive and at times useless, but don’t let the fact that you need down time be your defeating moment. There is no shame in taking a break or even a nap!

Sometimes only a few hours are all that’s needed to give you the strength needed to keep going, other times you need days, but regardless of the time you need…take it and give yourself a break.

Don’t let today get the best of you. Take a deep breath and calm the thoughts that are racing through your mind. You may be weary and battle worn, but you are not defeated. Remember, sometimes you must rest a while, but just don’t quit.

I never asked to get sick

I am encouraged by the stories online of people with multiple sclerosis who advance in their careers, run marathons, and are seen on TV giving a face to MS. I applaud them and am cheering them on. 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 of how someone drank a special mineral water every day 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 hiding your struggle from others. It’s acknowledging the ugliness of MS and choosing to push through anyway.

For so many people 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 go by. Relapses happen. With each relapse a new normal is found and the process continues.

I wish I could say, like so many do, that I have had MS for 20 years and I’m 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 for me and ever changing. 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.

I never asked to get sick, to have to quit my job, and 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. I have even been known to argue with myself as I work up the strength to get a shower to start my day.

Living with MS is hard but not impossible. I still 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. I see people willing to help me get something from the top shelf at the grocery store. 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 warms your heart, that brings you joy? Hang on to those things today. It won’t make the day easier but it will make the load lighter.

Today is not a “give up” day. It’s not an “I quit” day or an “I can’t go on” day. Do you know what it is? It’s an anything is possible kind of day. It’s an I believe I can go on even without a lot of strength. I can fight…so I will.

Cold weather and multiple sclerosis

Cold weather is not my friend. My muscles and joints choose to stop working the colder it gets thus making moving any body part especially difficult. If you were to ever see a snowman walking (or is it snowperson? I never get those things right.), I think I would be what that looks like. I can totally understand why bears choose to hibernate in the winter. I need to take a long vacation to the Caribbean right about now…or find a way to sleep until summer gets here. I’m open to options.

Between my hands having trouble holding onto things and my muscles freezing up, I’m a bit of a sight during the cold weather months. Every part of me seems to get weaker as the cold settles in. Yes, I also have trouble with hot temperatures. I need to find some place with even temperatures all year long. So far this year the winter here hasn’t been too bad. I’m definitely not looking forward to having snow. Have you ever tried maneuvering a wheelchair through a foot of snow? Talk about stressful.

Because so many people with multiple sclerosis choose to remain indoors during the winter months, it’s a time when depression has a tendency to creep in. Parties are in the making and get togethers happen more frequently. For me, I give a lot of “maybe” replies to any invitation I get and those maybe’s turn into canceled plans more often than not.

Sadly, invitations are becoming less frequent as the years go by. I think people just assume I won’t be able to come so they don’t even bother to ask anymore. Talk about painful. I’d rather be invited and given the choice as to whether or not I can attend then to not be invited at all.

Although this time of year can be difficult, don’t let depression walk in the front door…or sneaky in through the back door for that matter. I know that’s easier said than done, but try to keep the gloomies out. Find something you enjoy doing and stock up on all the supplies needed to keep you going for awhile whether that’s knitting, drawing, coloring, jigsaw puzzle building or movie watching.

I have a box filled with thing to keep me busy. In mine there are coloring books, 3D puzzles, and even a set of legos. Lately though, I’m finding it easier to use some of the apps on my tablet than the real items. I can just point and tap to fill coloring pages with my finger instead of trying to hold onto colored pencils and stay within the lines, and I can complete puzzles by tapping and dragging the pieces in place. That’s not me being lazy. That’s me making better use of my time and still being able to enjoy what I’m doing.

Get creative and make your own fun. The warmer weather will be back before you know it.

Can you catch multiple sclerosis from someone that sneezes in your direction?

I sat across from a lady at Olive Garden that thought multiple sclerosis was a contagious disease and she needed to get away from me so she wouldn’t catch it. Far, far away. She even complained to a worker saying that they need to make me leave. How do you respond to people like that? At first I was stunned at the sheer lunacy of the thought that someone believed they could contract a chronic illness that destroys the nerves in a person’s body.

If I was thinking a little clearer at the moment I would have let out a loud cough, blew my nose into a napkin, turned around and grinned a bright shinny smile in her direction while letting her know that she needs to go home right away, take a hot shower, eat a bowl of chicken soup, take a handful of vitamin C, and cover her chest in Vicks vapor rub for the rest of the week.

I don’t know where people get those fear-filled ideas from. It would make a great comedy routine, that’s for sure. My friends got a kick out of it so at least I brought smiles to the table without even trying.

When I got home I was shaking my head in amazement that people like that actually exist. Some will never hear that heir thinking is flawed. They are just adamant that they are the person filled with truth and know everything about everything. How sad.

Just as I’m not contagious, I can’t cure myself either. Yes, there are foods that help me to maintain a healthy body and foods that tend to trigger my symptoms. There aren’t many that adversely affect me but those that do, I try to avoid. No diet will cure you. All those with MS that change their diet to help, they are not cured. Even the die hard dieter will tell you that their MS will still creep up and tries to ruin their day. Their diet isn’t curing them. They are just keeping a manageable life with an incurable disease.

Remember that this is your life. You are the one in charge of you. Enjoy life while you can and don’t let anyone take the reins. No cure doesn’t mean no hope.

change

Today put on your MS superhero cape and meet the world. You got this!

I’m sitting in my favorite chair this morning as I write my thoughts down to start my day. The air is cool…thankfully. My favorite throw blanket is lying across my lap and there’s a fire going in the fireplace. Don’t get too excited…it’s an electric fireplace with fake flames, but the heat is real when I turn it on. That’s what counts, right? I have a hot cup of coffee with me and my computer’s in my lap.

That’s a perfect morning for me. I enjoy my time of quiet solitude to collect my thoughts, reflect on times past and prepare myself for the day ahead.

Many of you live with a stable condition of multiple sclerosis. Your days are fairly predictable and you are able to plan ahead easily. You know what to expect and how to adjust to the changes throughout the day. Then there are others, much like me, who have such unpredictable days, you can’t plan well because MS changes too drastically from one moment to the next. Even in your planning you don’t plan well.

MS is a disease of change. Some deal with smaller changes, but it’s all still change. It would be so nice to know what a day will be like, to plan and be able to keep those plans, to go to parties without leaving early, to spend time with friends without falling asleep on them, to spring clean the house, wash and detail the car, and cook a holiday meal. It’s been years since I was able to do any of those things. I try though, and that’s what counts. I try to do as much as I can when I can and leave the rest to tomorrow.

If you can’t adapt to change, you will find your days hard to get through. For some, it’s not easy learning to go with the flow…to ride down the river of life rather than fighting with it. It’s okay to end your day differently than you expected, leaving things still to be done. Don’t get frustrated because your house needs to be vacuumed and yet you don’t have the energy to do it at the moment. I don’t know of anyone with an un-vacuumed house that has stopped the world from spinning causing it to tilt on its axis thus ending civilization as we know it. Your day will go on and the vacuuming can wait for another day.

Choose the important things in life to be your focus rather than the things of little importance. I’ve learned that many of the things that I thought were important really weren’t. Use your time wisely and know that YOU are what’s important, not what you can or cannot do. You are valued, treasured and needed. So today, step into the changing room, put on your MS superhero cape and step out into the world. You got this!!!

The A, B, SEAS of multiple sclerosis

Some days I really think my brain needs oiling, or maybe it needs repairing. Oh, who am I kidding…I just need a new one! You want to know why I forget appointments, people’s names, a movie I have already watch…twice, and what was said a few minutes ago? I think it’s due to the fact that my brain looks like a block of Swiss cheese on my MRI scans with holes scattered all over the place. 

If you were to pour water onto my brain, I’m positive it would leak like a sieve all over the place. I think many of my thoughts have fallen into those holes.

I imagine words bouncing around in my brain, sliding from hole to hole and hitting road blocks in hopes of finding a way of escape. It’s kind of like they are stuck in a perpetual reality game of Chutes and Ladders.

What happens to the thoughts that don’t find a place to call home? Do they just keep rattling around in there all day long? It’s such a weird feeling to know the words I’m trying to say but can’t seem to connect those thoughts with my tongue. I know I frustrate people from time to time with my long pauses, lack of complex vocabulary and made up words. I frustrate myself too.

I’m thankful for the people who are patient with me and allow me the space I need to piece things together even when I get things all mixed up. The phrase “collecting my thoughts” never meant much to me until multiple sclerosis came along. Now I truly know what it’s like to sift through words, thoughts and ideas as I attempt to find something that makes sense.

But that’s my world now…a jumbled up, 3-dimensional word search game. The bad thing about it is that someone keeps switching the game board and jumbling up all the words. Just when I think I have things solved, BAM…there’s a new arrangement of letters and words to sort through. I call it my A, B, SEAS.

So, if you are looking for me today, I’ll be sifting through a sea of letters and words in my brain searching for…what was it again? Pancakes? Trashcans? Envelopes? Ugh…I think I need a nap.

You are brave even when you don’t feel like it

Dear Weary One,

I know your heart is heavy. Right now you are on the verge of tears…tears that have been collecting deep in the spaces of your heart and flooding over into your mind. You have met reality face to face and you don’t like it one bit. Multiple sclerosis is your reality. It’s real and you feel it deep. You are finding yourself overwhelmed and challenged in every area of life, and you feel the weight of simply getting through today to be daunting. Laundry has piled up and errands are on hold as you sit alone feeling like you’re about to break.

You don’t feel very brave right now. Sure, when you go out the door with a smile plastered across your face, you are brave. But that’s a mask you wear out in public to cover the pain. Here you sit, alone, and the mask comes off. Your thoughts are running wild and the tears begin to fall. Where’s your brave when you feel numb to the core? Where’s your brave when all you see is clouds before you and not one ray of sunlight can be found? Where’s your brave then?

Think back at the times you wanted to quit because you were scared, but you kept going even though you were unsure of how things would work out. You were brave. You chose to do the very thing that scared you regardless of how much your heart was racing or the fact that you wanted to give up. You chose to do it afraid.

Everything we do in life has some risk involved. Life itself is full of risks. The moment you get out of bed you are stepping into the unknown, and that can be scary. Some days more so than others, but scary nonetheless.

When I think about what it means to be brave, I think about being afraid but doing it anyway. I think about the times I wanted to quit, but chose to keep going. Each day you venture out into the unknown…afraid…afraid of what the day may hold or of what tomorrow may bring; your knees are knocking, your palms are sweaty, you heart is trembling, fearful and uncertain, but you do it anyway…you are brave.

Bravery isn’t a pill you can take along with your handful of vitamins and meds each day. It’s not a matter of never being afraid. It means pushing through your fears and holding onto courage instead. You are brave whether you feel like it or not if you simply keep going. Remember all the things you’ve overcome, the challenges you’ve faced, the decisions you’ve pushed through…you were brave then, you can be brave again.

There truly is strength in you, a strength so amazing that even you didn’t know it was there. You’ve held on this long…that’s brave. You don’t see it, but I sure do. You are a brave warrior in this fight.

Rise up and be confident in who you are. Don’t give up just because the road is hard. It takes a strong person to wake up in the morning and face a new day surrounded by challenges, and you are doing it.

Discouragement will happen, exhaustion and stress will find you, but don’t allow your heart to grow weary too. It’s okay to let the tears flow. Sometimes that’s all you need to do to lighten the load. Let it go and find your brave today because you are brave!

Signed,
A friend standing with you in the fight

Multiple sclerosis pain is real

You never realize how strong you are until you are faced with a challenge that tests your strength. Many people see being strong as hiding your emotions, censoring how you feel and keeping it together at all times…basically to lie to yourself and to others that you even feel or have any problems in your life.

How many times have you heard “suck it up” when you were hurting so badly that you didn’t even have any breath to suck up in the first place? Those kinds of words drain any remaining life out of a person leaving them feeling hopeless and wounded. Life isn’t fair…absolutely, but that doesn’t mean pain should be swept under the rug and invalidated.

Pain is real. Pain stings. Pain hurts. And for those who are unfamiliar with multiple sclerosis…it hurts too.

It’s sad to hear of the doctors out there that don’t believe MS is painful. There are hundreds of thousands of us living with MS that would disagree with that statement. We can be hurting from uncontrollable muscle spasms, joint discomfort, headaches, Lhermitte’s sign, optic neuritis, and burning nerve pain.

My first MS painful moment was an encounter with the dreaded MS Hug. It feels somewhat like a girdle around your torso but you can’t take it off or loosen its grip. For me, it lasted for days and days. Only this past year has it actually seemed to disappear. Either that or I have finally gotten used to the pain and am able to ignore the discomfort it causes.

The truth is, there are times when life knocks the breath out of you without warning and leaves you down on the floor seeing stars. When that happens, you don’t need another slap in the face or kick in the gut by an insensitive person throwing out cliches and misinformation.

We need to redefine strength.

Being strong isn’t denying your emotions…it’s embracing them. It’s saying “Yes, I’m hurting” and allowing yourself time to grieve. It’s crying when you need to and screaming if you have to. You don’t even have to succeed in order to be strong. Trying your best and failing shows greater strength than doing the victory dance at the finish line. You have to be honest with yourself and acknowledge your feelings. You can’t hold back what makes you, you!

The important thing is to not allow your feelings to control you. Give yourself thirty minutes to cry that gut wrenching cry you need to get out, then catch your breath, blow your nose and hold your head high. You may not have control over the things happening in your life, but you do have control over how you respond.

Never give up the fight to survive no matter how weak, hopeless, or completely powerless you may feel. You are stronger than you give yourself credit for. Remember, tears aren’t weakness, they are simply parts of you leaking out to make room for those amazing muscles you are developing.

I got stuck in a crazy game of life with multiple sclerosis

I woke up today stuck inside a pinball machine. Why do I say that? Well, it’s pretty obvious. From the moment I got out of bed I found myself bouncing off the walls that lead down my hallway, running into the tables and chairs, and then I tried to slide through the space between my refrigerator and the cabinets. I think my body is stuck on permanent tilt.

I hate when that happens. It might help if there were bumpers strategically placed around my house to make bouncing a little more comfortable. Oh, and a jackpot prize for the times when I nail the ramp that leads me into the black hole of the unknown. Now, that would be amazing.

Instead of letting my walking difficulties get me down—sometimes literally—I choose to be thankful that at least I’m still in the game. Sure, bouncing around the house is not much fun, but I could have gotten stuck in a Hungry Hungry Hippo game instead and had a herd of hippos trying to eat me alive.

A life with multiple sclerosis isn’t easy. For some it may be a walk in the park with little to no symptoms, but for others it’s a daily and sometimes minute by minute struggle. You can choose to allow the struggles you face today eat you up, causing bitterness and anger to control your day…not only your day, but your life.

Or you can change your focus from looking at all your problems to realizing that there are worse things in this world you could be facing. I’m not one to downplay pain. Pain is pain and hurt is hurt no matter if it’s a paper cut, a broken heart or a messed up brain. But if all we do is look at how bad we have it, thinking we have the worst hand anyone has ever been dealt, and go about our day complaining because life is so hard, unfair and not any fun…day after day after day, it’s time to stop and make some changes.

Yes, the game of life can be the pits. Sometimes you get sent back to the start of the game, sometimes you lose a turn, sometimes you get sent to jail, but sometimes you win a prize or even the jackpot. You never know what today will bring; good or bad or something in-between. But you do have control over how you will respond to what happens. I decide to choose life! Who’s with me?!

Sometimes hope is the only thing I have left to cling to

I long for the day multiple sclerosis can’t ruin another persons day, life, relationships, or career. Where invisible pain, unwarranted fatigue, brain freeze moments, dropped cups of coffee, and embarrassing bathroom mishaps no longer happen on a daily basis. Am I just dreaming? Maybe. But even crazy dreams like that have a possibility of happening…so I hang on.

Sometimes hope is the only thing I have left to cling to and that’s so much better than drowning in the sorrows of pain, confusion and uncertainties. Trust me, that’s not the way to get through a day with MS. You may not be able to shake yourself free from the emotional roller coaster you find yourself on, but there is a way to get through today. It’s called one moment at a time. That’s the only way I know to do it.

The impossible thing you are facing today, you’ve got this. You can’t give up just yet. And when people ask what it was that gave you such strength, the resounding answer will be “They had multiple sclerosis and yet they lived and loved life in spite of the struggle.” I want you to be able to carry that strength with you everywhere you go.

Today, you have the needed strength to face this very moment in your life no matter if you are in the hospital hooked up to noisy monitors, busy nurses and meds galore or if you are stuck in a dreading morning meeting at the office filled with stale coffee, meeting notes and grumpy coworkers.

You are amazing regardless of what’s happening around you. Never believe anything different. All those negative focused thoughts that have a tendency to make their way into your head…they are lies. All lies. You are strong enough for this part of the journey. So much stronger than you give yourself credit for.

Enjoy the little moments that make up today. Find something that gives you joy and do it. Find a rainbow in the storm today even if it’s just a bag of skittles. Today is your day, now get out there and LIVE!!!