A life with Multiple Sclerosis is not easy

A life with Multiple Sclerosis is not easy. Maybe it is for those living with a benign case of it, or for the ones that progress so slow that their symptoms are negligible or only slightly irritating. If all cases of MS could be so simple I would be extremely grateful and probably even do the happy dance in the middle of Main Street.

For many of us though, our days are more like a cross between a hard time and an intense struggle. Our daily routine is one of adaptation, change and change some more. MS is unpredictable. More unpredictable than the weather. Will it rain today? Snow? Maybe the sun will come out? Will I need to use a cane to get across the parking lot or do I need to be on the lookout for an available motor cart? Will my legs work, my vision stay clear, my hands cooperate, and my body behave?

I may not be able to control what my body is doing from one minute to the next, but there is a part of me that I do get to determine. I get to choose my reaction to the things happening around me. I get to choose whether I give up or keep going. I get to choose if I smile or cry. I get to choose bitterness or thankfulness. I get to choose whether I laugh when I end up on the floor while transferring from my bed to my wheelchair or if I sit in a puddle of self pity on the floor moping about how hard life can be.

Let go of yesterday. Let go of the hurts that come from not being able to do the things you used to do. Let go of the pain of change. Let go of the fears. Let it all go.

Sometimes we have to let go of the person we once were in order to see the amazing person we are becoming. You get to choose who that person is. I know I see greatness in you. I see someone who is brave, strong and courageous. Someone who has been dealt a terrible hand in life yet is still trying to make the best of it. Someone who isn’t perfect, but then again who is? Someone who is weak in their body, but oh so strong on the inside.

I hope you can see that too.

I may not be as strong as you think I am

Hi, my name is Penelope and I have Multiple Sclerosis. (I feel like everyone in unison should say “Hello Penelope” like in those support groups.)

I am a real voice of a person living with a chronic illness. I can be a bit rough around the edges, creative, funny, and slightly opinionated. Sometimes people make the mistake of thinking that since I am so open about the difficulties and struggles I face, that I’m a super tough, amazingly strong person. Somehow they assume that the problems they are facing, I never face. That nothing gets through this armor I wear.

But it does.

I get tired and at times can become overwhelmed with all the challenges that MS causes in my life. There are moments when the thoughts swirling around in my head are all screaming at me in unison to quit. There are times when it takes everything I’ve got just to drag myself out of bed, open the curtains and welcome a new day.

I have moments of doubt that I really matter especially when my body is weak and I am struggling with the simplest of tasks. Things like holding a cup of coffee, washing my hair or tying my shoes.

When it takes every ounce of strength I can muster up just to take another step, it’s at those times that I find myself clinging on to hope. For me, hope is what gives me the strength I need to keep going when all I have left are tears.

Hope that my voice about life with MS will be enough to make someone stop for a moment and realize that what they are going through is real and not just all in their head.

Hope that the things I write will be a right-on-time read for someone needing a little bit of encouragement, support and a gentle hug.

Hope that lives will be changed through the things I say and the laughs I give.

Hope that people will begin speaking more freely about what life is like for someone living with MS.

Hope that those without MS will gain a deeper understanding about the challenges we face.

Hope that tomorrow with be better than today.

I’m here to say that MS is real and so is the struggle we live through. It can break even the strongest of the strong. Sure, we get pretty good at slapping on a smile to cover up the emotional and physical pain, but that doesn’t change the fact that MS hurts. It really hurts.

The important thing is to not let the pain or the daily troubles you are experiencing become so big that MS is all you are able to see. Pause and look around you. There is a world to be explored and people to meet. There is a life to be lived…and you are the one to live it. Strap on your armor, hold your head high, take a deep breath and step out.

I may not be as strong as you think I am, but I know I’m not alone. There’s an entire army of us brave and courageous MSers who never quit as we face the impossible each day. Together we are standing strong. Together we are doing it one hope at a time!

When I’m afraid

I am terribly afraid of cockroaches. I don’t know why, I just am…especially the flying kind. Those freak me out. Just writing about them gives me the heebie-jeekies. I remember one time when one landed on my shoulder. I danced around the room like a breakdancing ninja trying to shake it off. I can still feel its legs crawling across my back. Yikes! To this day, if a cockroach shows up in my house you will hear me scream…all the way over in Australia.

Fear is a powerful thing. It has this way of paralyzing someone no matter how strong they think they are. Those of us living with Multiple Sclerosis are faced with some pretty big fears too. I have personally dealt with my own set of fears because of MS: the fear of not being able to take care of myself, of being rejected by the non-disabled world, of having to depend on others, of not being taken seriously when talking about my hidden symptoms, of being made fun of for using a cane, walker or wheelchair.

With all those fears swirling around in my head, I had a choice to make. Was I going to let fear control me, bringing great amounts of suffering to my life, or was I going to admit they exist and work through them? Could I stand up to the very things I feared? Was I even strong enough to face them?

I chose to work through them. It wasn’t easy and new fears kept trying to sneak their way in, but I was determined to keep my focus on living for today, not on the fear of tomorrow. You do realize that even the most courageous warrior’s knees will knock and voice will shake when staring down their fears.

For so many people, the fears of MS can be a lifelong struggle. It takes courage to confront them head-on, but if you want to find your place in this world you have to face them. You have to learn to accept yourself, your disability, and your limits, yet push past them to discover your new abilities and greater passions. MS is real but so is your future. You have a future ahead of you but in order to reach it you have to let go of the fears that are holding you back.

I won’t lie, we have a long road ahead of us and it’s not an easy one either, but don’t let fear run over you along the way. Make sure the choices you make today are not being made out of fear. You will discover that you have strength far beyond what you could ever have imagined possible had you never looked MS eyeball to eyeball and said, “I can do this. I refuse to give up trying.”

Be determined and stand strong. You really can do this!

Sometimes I cry

I woke up in tears yesterday. No reason. Nothing bad happened to me in the middle of the night. I didn’t wake up from a nightmare, my goldfish didn’t die and I wasn’t in a lot of unbearable pain. My emotions just went haywire all on their own. I hate when that happens. I take meds to help keep my emotions stabilized, but yesterday’s dose must have been a dud.

Multiple Sclerosis has this way of messing with a person’s emotions. Sometimes there’s a valid reason for the crazy mood swings we experience. Things like the fact that we are dealing with daily challenges and changes in life that sometimes become overwhelming and difficult to handle.

But there are actual times when our emotions get all out of whack for no reason other than the fact that the wiring in our brain is short circuiting and meddling in our emotions. That really does happen. MS messes with my ability to walk, think, talk, see, and sometimes it seems to get bored doing all that and decides to get its grubby little hands on how I feel too. It seems nothing is off limits to this monster.

When the nurse got to my house for her normal visit, I was sobbing into a sock. (Don’t judge. I didn’t have any tissue nearby so I used what I had. Besides, socks actually work pretty good as tissues.) Just having her with me helped to calm my tears.

Sometimes someone assuring you that things are going to be okay really does help. Sometimes all we need is a hug, a kind word, a gentle touch, or a hand to hold. Although those things don’t change what’s happening in our life or restructure our brain, they comfort the heart.

If I could reach through the screen to you, I’d hold your hand and remind you of how truly amazing you are. I’d listen to you talk about your struggles, your challenges, your fears, and remind you that no matter what you are facing, you are strong…much stronger than you think. I’d cry with you, make you giggle and let you have my last cookie. (You know you’re special if I share my cookies with you.)

If today is a “cry in your oatmeal” kind of day…cry. It’s okay to do that. Let it all out. Then dry your tears and remind yourself that you are a champion, a winner, a warrior. You may not feel like one, but you are.

Don’t stop trying to be the best you can be regardless of MS or whatever else you may be facing. I believe in you.

A pocket of broken stories

A pocket of broken stories

I once had a job picking up rocks. Of course, I was only seven years old and I earned a meager penny per rock, but it was a job all the same. We were farmers back then and clearing new land, preparing an area to grow crops.

Initially the soil was plowed to break up the hard ground. My job was to walk behind the tractor and pick up the rocks that the plow blades brought to the surface. Some of those rocks would be small, about the size of a golf ball. Others would be so big that I would struggle just to lift them. Then there were ones that were simply impossible for me to get my tiny hands around. Those rocks, or maybe I should say boulders, I would leave for one of the grownups to collect. Each rock earned me a penny, no matter its size. I felt so proud and important.

After walking across every inch of the plowed field, picking up rock after rock that surfaced, the land would be plowed again, only this time a little deeper.  And we would go through the same process all over again.

At the end of the day, although we were sore from head to toe and dirt was caked under every fingernail, as the sun was setting I had a sense of accomplishment looking to the edge of the field where the pile of rocks lay and then looking across at the beauty of the freshly plowed field, cleared and ready for planting.

It’s amazing the things that come to the surface when you plow a field, besides rocks. Broken pottery, hidden treasures, and even rusted out tin cans. You never know what may show up. But each item has a story to tell.

Those broken pieces of pottery at one time were used to carry water from the nearby stream, and now all they carry is a memory of what used to be. Those hidden treasures are thankful to see the dawning of new light once again. Their beauty has faded with time, but their regalness still remains. And that old tin can, which held someone’s meal in days gone by, is now filled with holes and no longer able to hold anything of substance.

But do you know what I did as I walked behind the tractor picking up rocks? I picked up those other items as well. I not only had a pile of rocks at the edge of the field when the day was over, but a pile of broken stories in my pocket. Each item made its way back home with me and I gave them a place of honor on a shelf in my room. They were my treasures.

Just like those treasures I put in my pocket, your life is a beautiful treasure. It may be broken and you may feel unimportant and lost out in the fields of life, but you are valuable and deserving of a place of honor. Your brokenness tells an important and much needed story to the world of perseverance, strength, and courage. Never stop telling it and never, ever give up.

What does it mean to be a positive person?

What does it mean to be a positive person?

There are people that misunderstand what it means to be a positive person. Some seem to think it means that you say nothing negative, think nothing negative and basically live in denial of all difficult circumstances in life. They believe that as long as you don’t acknowledge that there’s a problem, then the problem doesn’t really exist, or at least it doesn’t have control over you.

I had a friend who wouldn’t open her electric bill when it came in the mail because she feared the amount it would be if opened. To her, as long as she didn’t see it, it didn’t exist. But if she ignored it long enough, her power would be turned off. No amount of denial would change that fact. She had a bill that needed to be paid and it wasn’t going away unless she faced it and worked out a plan to pay it.

Being a positive person does not mean that you ignore what’s going on. You can’t go through life with your head stuck in the sand refusing to acknowledge the reality of what you are facing. Positive people cry. They get frustrated, angry, and at times want to give up. They have fears, worry, doubt and have moments of deep despair. They have negative thoughts and emotions…

BUT…

They don’t allow those things to hang around for long. It’s not easy to do either. Facing difficult situations can be scary and stressful, but anyone can learn to look for the positive side to a negative day.

Can you see the good in a rainy day? The rain makes it harder to drive through traffic or to keep your shoes clean, but it brings some much needed water to the earth and creates amazing puddles for you to wade through. Are you more prone to see the mud on your shoes or the rainbow that just formed in the sky? It’s all a matter of perspective. Good and bad both exist in every situation. You have a choice of what you will focus on.

Each person diagnosed with MS is affected by it. We are all human and we all hurt. Anyone that says they never have a negative thought or feeling regarding MS is not being truthful. We all have them. It’s what we do with those thoughts and feelings that matters.

If you need to have a melt down, cry, vent, or even scream…it’s okay. We need to take time to process all that is happening. The continual changes that are happening can get overwhelming.

The fact is, MS is real and it’s not going away tomorrow apart from a miracle. That is the bad. But as you wait for your miracle you can choose to see the good all around you.

Laugh, love, cry, hurt, smile, but choose to live your life each day from a place of positivity. Find the smile in your day, the rainbow in the sky, the good in the bad. Don’t deny that MS exists in your life, just deny its power over you being able to live it.

Now that’s being a positive person.

Sometimes life dumps a pile of poop on top of your head

Sometimes life comes along and dumps a big ole stinkin’ pile of poop right on top of your head. It doesn’t ring the doorbell or schedule an appointment either. No, it comes around unannounced and without warning. I would love the opportunity to throw it back or pile it up at its front door…on fire, but somehow I can’t seem to find a shovel or a wheelbarrow when I need one.

But you know, I have learned to appreciate those piles of stench when they come. Sounds crazy, I know, but some of the most amazing flowers I have ever seen have grown out of the most terrible of circumstances. I saw a beautiful, radiant flower growing in the middle of a smelly old compost pile once (that’s just a nice way of saying a pile of poop). There’s something powerful and amazing about a flower growing in the midst of tragedy. Imagine all it had to go through just to bloom, to grow. It had to push through a whole lot of crap, suffer more than most, yet somehow found the strength to rise up and bloom where it was planted…in the middle of a mess.

I’m sure it felt suffocated, unappreciated, unlovely, unimportant, and even out of place, especially seeing all the other flowers enjoying the comforts of the flower bed. Yet there it was stuck in a pile of poop. That would make any flower contemplate giving up.

Over the years, I have noticed that life is full of piles of poop. As we walk this journey, sometimes we are going to step in some pretty big smelly piles of it too. Sometimes life is going to keep piling it up. Pile after pile, mess after mess, struggle after struggle. And when that happens, our first reaction tends to include throwing our hands up with serious thoughts of quitting.

Maybe you’ve been pooped on by life and you’ve simply had more than you think you can handle. Maybe MS has been bothering you more lately than in times past. Maybe you are overwhelmed with the constant challenges you face and the never ending uncertainty of what tomorrow will bring. Maybe you have other things added into the mix with MS like problems with your finances, marriage, relationships, kids, and job.

But you know what? Even with all the difficulties and disappointments, I know you’re not a quitter. You are like that amazing, beautiful flower growing in the middle of a mess. That’s pretty incredible if you ask me. Don’t miss out on living because you find yourself surrounded by a pile of poop. It’s time to push through all that mess, hold your head high and bloom where you are planted. You may not be able to change your circumstances, but you can change your perspective and find beauty in the mess.

I will not be defeated

So, what’s it like living with Multiple Sclerosis? That’s a question I am asked from time to time and one that’s not all that easy to answer. Trying to describe the physical and mental difficulties and limitations that we experience because of MS is often met with some interesting responses from others.

I’ve been told to “take Tylenol” for the pain in my body, to “eat more potassium” for the cramps in my legs and hands, and to “take B12 and energy pills” for the exhaustion. When I explain that those things simply don’t work for me, they look at me like I’m a one-eyed purple polka dotted crazy person. After all, it works for them so it should for me too.

Some people just don’t seem to understand that those of us living with MS are not like them. We have a damaged Central Nervous System. Some of the damaged areas have healed well over time but some haven’t. And new damage appears all the time.

The pain we experience is not because we are in real pain like someone stepping on our foot. We are in pain because our nerves are misfiring and sending pain signals to our brain when there is no real existing pain in the first place. To stop the pain you have to stop the communication process, not the actual pain. There are some medications that help to disrupt this broken communication, but I haven’t found one yet that works for me.

The numbness in our body is not something that goes away by uncrossing our legs like someone does when their foot falls asleep. Parts of our body are numb, experience that “pins and needles” feeling, and cause pain to shoot through our body every minute of the day. No amount of rest or exercise will wake them up.

The exhaustion we experience isn’t because we didn’t sleep well the night before or because we aren’t eating nutritionally. It’s a debilitating symptom of the disease that is not remedied by natural herbs and better sleep. Although those things can help, it’s not a “fix”. Making it through one day without having to take a nap is a good day.

Many of us also deal with vision problems that can’t be corrected with glasses, dizziness, muscle weakness, bladder and bowel dysfunction, breathing difficulties, and of all things, heat makes it all go into supersonic chaos.

That hot shower most people enjoy, we can’t take because our muscles will seize up. That hot tub soak, an impossibility. That day at the beach, even in the shade our symptoms can be hard to deal with. That trip to the mall, within thirty minutes many of us are done. Just making our way across the parking lot of the grocery store presents a challenge that some days we don’t want to face.

But through it all, I have learned to look this disease of MS square in the eyes and say, “I am not defeated because of you and regardless of what happens in life I am thankful for each new day I am given.”

We will never understand all the “why’s” in life. Why MS? Why now? Why me?

Stop questioning why you are going through the storm you are currently facing and determine to be thankful as you go through. You can be thankful even in the most horrible of circumstances, but it’s a choice; and you can make that choice today. You can stand up (even if only on the inside) and say, “I refuse to be defeated by MS.”

I have learned that strength isn’t measured by the amount of things I can do or by how big my muscles are, it’s determined by the attitude that I have while going through the difficult times in life. You are stronger than you think. Square your shoulders back and hold your head up high today because you are STRONG even though your body is weak!

pause

Pause and rest

You’ve heard that old saying “when it rains it pours”? Well, that seems to be my life lately. Just when I think I’m coming up for air, boom…I get hit with something new. Sometimes those punches are MS related, other times they are just life being life.

Yesterday, I left the house for an appointment and when I put the key in the ignition to start my van, I discovered the battery was dead. Now, that’s not a catastrophe in and of itself, but it sure put a kink in my schedule. It took longer than expected, but I was able to get the van jumped off by a gracious neighbor, went to my appointment then headed over to the automotive store to have the battery tested. All seems okay with both the battery and the alternator so thankfully no added cost, just one of those “uh-oh, oh-well” moments we all have that take unplanned time out of our day.

The day before that I was dumping wet coffee grounds out of the coffee machine and managed to spill them all over the floor instead. I just stood there looking at the horrendous mess I made and thought how nice it would be to walk away and pretend that didn’t just happen. Then later in the day I slipped while transferring from my wheelchair to the couch because I wasn’t paying enough attention to my ever so calculated move, I dropped the shampoo while taking a shower causing the bottle’s pump mechanism to break, and I missed two important phone calls because I accidentally had my phone on silent.

Sometimes all the unexpected things start piling on top of each other and something as little as the front door slamming can send your emotions into hyper drive. You find yourself on the brink of simply throwing your hands up in the air and screaming “I quit.”

Wouldn’t that be nice? To magically make all your problems go away with a simple “I quit.” To have the ability to transport yourself with a wink and a nod to the beach so you could sip piña colada’s in the cool of the day without any worries, interruptions, mistakes or pressures. I tried closing my eyes and imagining myself out on the beach yesterday, but all I was able to manage was me drinking a lemonade in the garage.

When you feel you’re about to break…take a break, even if that means taking an adventuresome vacation to the garage, the bathroom, or the closet. Step away from all that’s happening and give yourself time to stop thinking so you can just breathe. The world isn’t going to fall apart when you take a time out and neither will you. You will be amazed at how much stronger you become in the process. Those little pauses can be life transforming.

Pause and rest today.

Shift happens

Multiple Sclerosis has taught me a lot about myself. It has taught me how to adapt to change and shift, many times on a daily basis, to the unexpected. No one likes to have their life disrupted by the unexpected. It makes our daily life hard to manage and plan out, but with MS you learn that it’s okay to change plans; that it’s okay to call up a friend to let them know you have to cancel today because your legs aren’t working or the fatigue has gotten too intense to handle; that it’s okay to acknowledge the struggle.

If you don’t learn to go with the flow, the flow will swallow you up in the process. I have had to learn to be okay with not being able to do it all myself. Ms. Independent and Ms. I-Can-Do-It-Myself have become Ms. Disabled and Ms. In-Need.

Did I like the lesson? Absolutely not! Was it easy to swallow my pride and allow others in so they could help? Absolutely not! But it was a lesson well learned and one that I’m still learning to this day.

I can remember the first time I started using a cane to help me walk. I was at the neurologist’s office for an appointment knowing full well I was struggling with my balance—holding onto walls just to make it down the hallway without falling down—when the news became a reality. She said, “You need to get a cane.”

My first thought was, “No way, I will not give in to MS. And besides, that would be so embarrassing. I don’t want to draw attention to myself.”

Then, as if she could read my thoughts, she said, “It will be much easier for you to use a cane than to have to deal with a broken bone due to a fall.”

I thought to myself…broken bone or broken pride…hmm! I chose to break the pride. That day I bought a cane. Over the months ahead I learned to adapt to its use. Some of those changes were easy, some were hard, but all in all they were great lessons to learn. I finally conquered my pride…or so I thought.

Six months after I started using a cane regularly, I was back in the neurologist’s office due to more falls and instability. I remember that day just as vividly. She said to me, “You really need to consider using a walker. It will help you by giving the added support you need.”

I was devastated hearing that. I knew she was right, but in my mind all I could think about was how I was letting MS win. Yet again, the neurologist was right and I learned an even bigger lesson. I learned that I still had pride in me that I was holding onto.

I wrestled with the same thing transitioning to a wheelchair. It seems like each new life-changing moment has hit me pretty hard, yet with each bruise, with each fall, with each shift, I have learned something new about myself and about life. Lessons that someone can only learn by going through the struggle.

I could fumble and stumble my way through life denying the battle I’m in or simply adapt with the changes when they come. It doesn’t mean I’m giving in or that MS is winning, it simply means I’m strong enough to know when I need help and that I’m not too prideful to receive it. That makes me the real winner.

The journey ahead will have its rough places. There will be cracks in the road, speed bumps, dips, terrible sinkholes, and mud puddles but I can tell you from experience that no matter what comes your way, you will be able to handle it. You are strong enough and brave enough.

The biggest lesson I have learned through it all—the biggest thing MS has taught me—is that shift happens.