To whom it may concern: Advice to the world about life with Multiple Sclerosis

To whom it may concern:

There is an entire world filled with people who don’t understand Multiple Sclerosis. I know since you don’t live with the disease yourself it is hard to comprehend, but I hope what I have to say will give you insight into what life is like for me…giving you insight and understanding into the life of someone living with MS.

First off, I would like to say that Multiple Sclerosis is real, it hurts, it is full of challenges and struggles, and if you haven’t figured it out yet, it is invisible to a majority of the population since the destruction takes place inside the body. The effects are seen in other ways as I walk, talk and go through my day with disabling symptoms, but if you were able to see inside my body, you wouldn’t judge me so quickly. My insides are a wreck and filled with chaos.

Sure, I wear a smile much of the time, but that doesn’t mean the disease isn’t there. It just means I’m doing a pretty good job at covering it up. You see the mask I wear, but let me pull off the mask for a moment. I get angry, fearful, weepy and scared. Lingering in the back of my mind is the fact that one day my future will be drastically different than it is today. You see, MS is progressive. That means that although today I may be moving around okay, tomorrow I may not. It may take a year or 20 years, but my life is changing every day.

Please know that it hurts when you so casually decide you know what’s best for me. MS has affected every part of my life, but that doesn’t mean it’s made me incapable of making decisions. Don’t exclude me from things just because you think I wouldn’t want to be a part or because you think it would be too hard for me to do. Let me make that decision. It hurts more to be left out than to give a response of “no thank you” to an invitation. I would much rather be given the option. Please don’t stop inviting me or including me even if you get a lot of “No” replies.

Another thing that really hurts is when you tell me you know how I feel. Really? You understand the fatigue that never goes away, the numbness in my body, the pain, the bladder problems, the vision struggles? I have major damage in my brain and spine causing continued chaos throughout my body, and you want to try and compare your flu symptoms to my MS? Please don’t do that. Unless you are living with MS yourself, don’t even try telling me you know how I feel. Support me, help me, console me if that’s needed, but don’t make the assumption that you get it.

Then there’s the problem I have of you always trying to fix me as if I’m broken. I’m not broken. I’m simply living with a chronic progressive incurable disease. That means it’s not going away unless a cure is found…and no, there isn’t a cure yet. All those supposed cures you read about online, they aren’t cures. They are either symptom management techniques, wishful thinking, or money making schemes. Nothing has been found to completely remove MS from someone’s life. Nothing aside from a miracle! So your great Aunt Sue’s cousin’s friend who was cured using a combination of bumble bees, tin foil, baking soda and pine cones…I’m not interested in the recipe. Accept me for who I am. I’m thankful you care, but your remedies cause me more weariness than help.

Something else I’d like to say…for some reason you have this need to ask me if I’m feeling better every time you see me. As I’ve said before, MS is progressive so that question truly has no answer. Feeling better than what or when? Yesterday? Ten minutes ago? Last year? Instead of always asking me if I’m feeling better, treat me like everyone else. There are more things to talk about in life than my having MS. I don’t want that to be the center of conversation every time we meet. I am more than my MS. I am still me and would much rather talk about gardening, traveling, architecture or the funny thing I saw yesterday on the side of the road. Don’t ignore my struggle, but don’t make it a continual focus either.

Please know that I have my bad days and at times terrible, horrible really awful days. Getting out doesn’t make them better either. In actuality, going out has the potential of making them worse. Me doing more will not make my MS symptoms less. Yes, exercise is important, but it has to be done carefully. That old saying “no pain, no gain” will not work for me. If I get to the point of pain, I have pushed too far and my body is going to rebel for days, if not weeks. I have to do everything carefully and with great planning. Sometimes my bad days happen within minutes of a good moment. That’s just how rebellious my body can be. So please don’t tell me I need to get out more or I just need to lose weight to feel better. That’s not the cause of my struggle and it is not the answer to my pain.

So, the next time you decide you want to judge me for my bad days, bad moods or even my bad responses to your insensitivity, keep these things in mind…

I am the same person I was before my MS diagnosis. I am intelligent, caring, full of fun, loving, ready to laugh at any given moment, and a great friend. I also have the potential to be angry, moody, and frustrated. All still part of who I am. I would like nothing more than for MS to be cured, but as of today that reality doesn’t exist. Please don’t look at my disability as if that’s all that I am. I am still me…MS and all. The only difference is that I need a lot more love, support, care and understanding. I would much rather have someone fighting alongside me than against me.

Signed,
An MS Warrior
(Penelope Conway, Positive Living with MS)

P.S. Please share this with your friends, family, co-workers, and neighbors. Multiple Sclerosis awareness is needed all around the world.

Multiple Sclerosis and cold weather

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. I’m definitely not looking forward to having snow. Have you ever tried maneuvering a wheelchair through a foot of snow? Talk about stressful.

Thankfully I’ve moved further south and snow is not as much of an issue for me any more. Just the act of putting on warm layers of clothing is difficult for me. I fall over putting on socks so I’m sure you can imagine the difficulties I have with long-johns, sweaters and gloves.

Because so many people with multiple sclerosis choose to remain indoors during winter, it’s a time when depression has a tendency to creep in. Parties are in the making, gatherings are happening and get togethers are more frequent among friends because of the upcoming holiday’s. 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, those 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, building blocks 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.

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

Ever feel like Eeyore?

“It’s snowing still,” said Eeyore gloomily.
“So it is.”
“And freezing.”
“Is it?”
“Yes,” said Eeyore. “However,” he said, brightening up a little, “we haven’t had an earthquake lately.”

I hate to say it, but Eeyore is right. That gloomy, grey stuffed donkey that lives in the southeast corner of the Hundred Acre Wood is right. His thoughts may be deep and most of the time rather gloomy, but even he at times can find the positive in a sad kind of day. Are you surprise? I bet you didn’t think that was even possible for him to do.

I know many Eeyore’s…people who seem sad all the time and tend to focus of the bad in everything happening around them. People who sit in their gloomy place finding mistake after mistake rather than looking outside to see that the wind is capable of blowing those dreary bits of life away.

Today it may be gloomy, rainy and muddy in your neck of the woods—multiple sclerosis has a way of doing that to a person’s life—but regardless of the cloudy and stormy outlook, there is still the possibility of rainbows and sunshine. It may be found in the kindness of someone you meet, a joke you read online, or a distant memory of precious moments with friends.

Regardless of what you are facing, I hope you know that you don’t have to go through this crazy journey alone. That’s one great thing about the internet…there are people all around the world who get it, who understand the struggle and are only a keystroke away. I’m here with you along with that person over there, and that one over there, and this one right here.

If your balloon should pop, if your house should cave in, if your tail should fall off, you have a group of friends who love you. You are not alone, I can guarantee you that. Allow yourself the time you need to grieve, cry, feel. Then once you have waded through the storm, look up for a break in the clouds.

Don’t let the gloomy circumstances in front of you keep you from seeing the possibility of something great happening in your life. Sure, it’s easy to point out all the things that are bad or worry about the countless things that could go wrong like Eeyore would do, but just this once decide to find something you can be thankful for even in the gloomy parts. If Eeyore can do it (although sparingly), then I know you can too!

“The nicest thing about the rain is that it always stops. Eventually.” – Eeyore

Don’t quit…not now, not ever

Have you ever felt like your whole life was falling apart before your very eyes and no matter how hard you tried you couldn’t do anything to stop it? That the very ones you thought would stand beside you forever turned and walked away? That in each passing day a wave of hopelessness flooded your heart and clouded your mind, inching you closer and closer to simply giving up? That just the thought of facing one more day filled your heart with tremendous pain, fear and too much uncertainty to manage?

If you have ever felt this way before, just know that you are not alone. I have been there too.

People who know me, know that I’m not a quitter…I never have been. I face everything with the confidence that I will overcome. But there have been times when I’ve felt like giving up and waving the white flag of defeat. I’m not immune to having the feelings of being overwhelmed, weak and uncertain.

I read a story once about Emperor Tamerlane who was badly defeated in battle. He ran from the battle and  hid himself away in a barn. Enemy troops searched the countryside for him. By this time he was depressed, his troops had been terribly defeated and scattered, and he didn’t know what he was going to do.

It was then that he noticed an ant trying to push a giant kernel of corn up over a stone wall. As he watched this ant attempt to do the impossible, he counted its futile efforts to see how many times the ant would try until it gave up.

One, two, three… twenty… forty… sixty-nine times the ant tried and failed to push the kernel over the wall. But in one last push, on the seventieth try, the ant made it. Leaping to his feet, Tamerlane excitedly said to the ant, “If you can do it, then so can I.” That day he changed his outlook, reorganized his forces, went back and defeated the enemy.

I wish more people understood that every day living with multiple sclerosis I am attempting the impossible, and just like that ant I fail more than once…but I don’t quit. I push, get exhausted, try again, fail, rest, but still get up and try some more. My entire life seems to be one giant push. I push through pain, weakness, dizziness, blurred vision, muscle spasms, and lack of sleep. I push and keep on pushing at everything I do. Nothing comes easy, not even something as simple as a trip to the mailbox.

Sometimes each one of us needs a little ant to remind us that we can do it. That this fight is worth it. That we can make it. Today, let me be that ant.

Don’t quit. Don’t let the fact that MS is a part of your life cause you to feel defeated. You can’t stop trying. You can’t stop pushing that kernel of corn. Don’t let MS win. You got this…now PUSH!

How I choose to live with Multiple Sclerosis

No one knows everything about multiple sclerosis. Not the person living with it, not the doctors, scientists, nutritionists or even informed family members or neighbors. There is still so much to be learned about this disease that spends its time gnawing aways at a persons nerves for no apparent reason. I think my nerves must be coated in barbecue sauce or something really tasty because they seem to be an inviting feast for the Myelin Munchers.

Over the hundreds, possibly thousands, of years MS has been around, to this day no one even knows what causes it. GMO’s, artificial sweeteners and crazy man-made chemicals didn’t even exist when it was first given a name. Sure, there are a lot of theories and debates on the topic, but no one really knows what causes it. It’s still a mystery. It’s still misunderstood. It still exists.

So when a person approaches me with a know-it-all attitude as to how I should be managing my MS or even curing it, it’s beyond frustrating. Now don’t get me wrong, I know most people are well intentioned and just don’t want to see a person hurting, but not everyone is. It seems most of the ones pushing the unfounded cures or remedies are just people trying to sell supplements, diet plans or medical cures.

They use all the smooth sales tactics to try and hook you in and make a person feel as if they must not really care about getting better because they are still eating pasta, drinking sugar laden soft drinks, or not getting the proper supplements a body needs. Now don’t get me wrong, there are definitely great benefits to eating healthy and ensuring vitamin intake is managed well, but that’s not the cure for MS. It’s not the solution to all that ails you.

I think I am propositioned at least once a week with the latest fix-all solution. Do you know what I do with them? I hit the delete button. It’s that simple.

I have found over the years that for my own sanity and wellbeing, it’s best to simply live my life the way I think I should be living it…not how someone else wants me to live it. I still research. I still read up on breakthroughs and possible answers to this horrible disease, but I take control of my own happiness in the process.

So if I choose to have an enjoyable cup of fresh roasted coffee each morning, do you know what I do? I savor every last drop. If I choose to not be on a certain MS med, then I don’t. If I choose to be on one, then I do. If I choose to take a handful of vitamins each day, I do it. If I choose not to, then I don’t. If I choose to eat a piece of cheesecake, a donut or even a big bowl of momma’s homemade spaghetti…I do it.

No guilt. No remorse. No bad feelings.

I choose to simply live life on my own terms, after all I only have this one life to live. I want to be sure to enjoy it. I would rather appreciate what I have here, now, today, then keep chasing after the unknown and unknowable all the while adding a boatload of stress and financial burdens that I don’t really need in my already crazy life.

But that’s just me…one crazy MSer living in Alabama choosing to control her own destiny.

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.

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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.

Beautifully broken

Have you ever felt worthless, hopeless and more like a crumpled piece of paper tossed into a trash can than anything of value? What is it about living with multiple sclerosis that makes so many people feel like an outcast?

Over the years I watched as my life transitioned into a beautiful butterfly then, bam…MS came along, damaged my wings and interrupted my life. I found myself unable to fly and when I did try, I tended to run into walls or fly crooked rather than soar among the clouds.

It came to a point where I no longer believed myself to be worthy, important or valued, but just because my legs don’t work or my body is weak doesn’t mean I’m of little value. I may drop things easily, fall over even while sitting down and require help opening an easy to open package, but those things don’t make up the person that I am. I am not my imperfections. I am not my MS.

The world has created this image of life. It’s an image of unrealistic perfection. I hate to burst people’s bubble here, but no one is perfect. Seriously! No one! We are all flawed in our own way. It may be because of a disability, a crooked toe or a birthmark covering your arm, but to me those things aren’t imperfections…they are beauty.

Many times in life I have felt like the first cake I tried to make. I spent a lot of time and effort putting together my masterpiece only my attempt at making a cake appeared to be a disaster. Each layer of the cake broke as I was removing them from the pans. I carefully pieced everything together on a plate but I think my icing was a bit too thin or maybe I piled it on too thick because the cake was leaning to one side and looked as if the slightest breeze would send the whole thing toppling to the floor. It looked like something ready for the garage heap.

I discovered in that moment that it was okay to be imperfect. I made no apologies for a misshapen leaning cake, after all cake is delicious in any form. My cake may not have won a blue ribbon, but at the end of the day, every morsel of it had been eaten and enjoyed. Perfect or not…it was pretty darn good. The empty plate can attest to that.

It seems people get tossed away and forgotten way too easily in the world today just because they don’t fit the mold society has created, but that shouldn’t be. Everything has beauty in it…even you, MS and all.

You may be imperfect, flawed, hurting and feel utterly broken at times, but you’re beautiful in your imperfection. MS may limit your abilities and at times cause you to feel alone and worthless, but this world wouldn’t be the same without you in it. You are unmistakably beautiful.

A group of people in Paraguay decided to make music from things found in a landfill…from the imperfect and the broken things that others had thrown away. It’s amazing the music they create from things others carelessly get rid of.

Watch this video to see just how beautiful broken things really are…and remind yourself that you’re amazing just as you are.

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I will never hide my pain

Have you ever had one of those days when you wished you could just curl up into a ball and hide away under the covers in bed because life was simply too much, too crazy and too overwhelming to bear? That’s me today. I woke up in tears…literally. That happens to me from time to time, only today it has hit me really hard. Harder than usual.

I hate when that happens. My emotions seem to have a mind of their own and sometimes no matter how hard I try to remain upbeat, positive and steadfast, I fail. It just goes to show that even people like me who strive to find the good in everything around them actually have times when they wish their out of control life could be put on hold and the pain had a pause button.

I’m human and I’m real. I will never sugar coat the difficulties of living with Multiple Sclerosis and I never want people to think that MS is a breeze to manage. Too many people out in the public don’t hear of the struggles we go through because too many MSers don’t talk enough about the truth of living with a chronic disease.

I am thankful for those living with minimal symptoms and that can handle the pain with ease at any given moment whether it be physical or emotional, but I know for a fact that’s not me. I talk about the struggles I face because I believe that the more the public is made aware of the things we experience, the more they will come to understand the reasons we have our unpredictable mood swings, cancel seemingly simple plans and spend so much of our time at home.

It’s not always easy for me to voice my needs. That’s because many times I don’t even know what I need in the first place. So when someone calls or stops by and asks how they can help out, I don’t always have an answer. It’s not because I’m being rude, antisocial or don’t want their help.  Most of the time it’s because I simply can’t see past the pain in the moment to know what I truly need. That kind of thing requires too much thought and most of the time my brain just blanks out.

But I can tell you this, what ALWAYS helps is genuine care, concern, support and love.  Those things help at any given moment and can be expressed through a simple “thinking of you” text, help around the house, offering to pick up some groceries, or just stopping by for a chat.

My greatest fear is to be forgotten in this fast paced, on-the-go world. It’s easy for that to happen too because many of us get to a place where socializing becomes extremely stressful and is filled with too many uncertainties and obstacles.

Getting out of the house requires great planning and considerations, things that many people don’t really think about. Will the place I’m going to be accessible for my needs? Will I have quick access to a bathroom when needed? Will I be in a place where I can remain cool? If a meal is involved, will someone be there to help me cut my food? If I get too tired (which is normally a given in my case), can I leave early? Does it cost because I live on a limited budget and even small expenditures are impossible to afford?

Any number of questions have to be considered in order to leave the house. Some days those questions are easy to answer, other times they are simply too much to face.

I woke up today with my laugh-box broken because the questions in life smacked me in the face as soon as I woke up. If that ever happens to you, give yourself a break and allow yourself the needed time to grieve. Grieving is a real part of living with MS, and it’s okay to have those moments. Just try not to stay there.

I’ve had my good cry already this morning. The world may never see my tears, but they will always hear my pain. I refuse to be silent in the struggle.

A myelin thief is on the loose

No one knows exactly when it began, but there is a serial kleptomaniac on the loose that seems to only have an interest in myelin: AKA the Myelin Muncher. With all the myelin that has been stolen over the years, you’d think there would be more evidence left behind, but this thief is pretty good at covering all its tracks. It seems to be a professional inside hit job.

Why this interest in myelin? I don’t know. It’s not like you could sell it for a profit. I don’t even think you could get rid of it on the Black Market. It’s an unsolved case shrouded in mystery…the kind where evidence pops up from time to time, yet not enough to lead to an arrest.

It has been speculated that Professor Plum did it in the library with a knife, but then I also heard it was Miss Scarlett in the kitchen with a rope. Rumors have also spread about Colonel Mustard, but at this point they are all just speculation.

The victims: you and I. It seems these myelin thieves are so sneaky that they can break into the Central Nervous System without setting off any alarms. Now that takes skill. It puts us in high alert, code red status at all times, which has a tendency to drain us emotionally and physically.

If you are in the middle of a robbery, hang on. You will get through this. It’s a sad and heart wrenching time, but you will make it. Those who have been robbed in the past can attest to that, but even past victims aren’t safe from future attacks.

It seems that once these thieves have found a way in, they return to the scene of the crime to try again…and again…and again. No one is safe, but don’t let that stop you from living. Stay strong and prove to the Myelin Munchers that you can’t be stopped. Multiple Sclerosis does not win!