It’s going to be a good day… Really, it is!

What a lovely day it is today.  Not because the sun is shining, because it isn’t.  Not because it’s a comfortable temperature outside, because it’s not that either.  It’s a lovely day simply because today is a new day filled with limitless possibilities. Anything can happen today…good things are in the making.

Today doesn’t need to give me warm fuzzies and sweet moments to be enjoyable, although those would be nice to have.  No, it just needs to be a day where I can focus on the positive side of things. When you have your day in focus, it doesn’t matter if you have multiple sclerosis, a flat tire, overdue bills to pay, or even a splinter in your finger, you are going to have a good day.

Why is that? How can someone that is dealing with constant pain, unbearable fatigue, financial difficulties, blurred vision, weak hands, being misunderstood, overlooked and under appreciated, have a good day? Because my attitude is what determines my outlook.

Think about it. I could choose to focus on the fact that MS is kicking my butt this morning and has been for a few week, that I burned my toast and that the coffee burned my tongue. I could allow those things dictate how the rest of my day is going to be, or I can decide that even though I’m hurting, I’m going to find something good about today to enjoy…and enjoy it.

Do you know the difference between a thermometer and a thermostat?  A thermometer measures the temperature while a thermostat sets the temperature. The person who goes through life allowing circumstances to dictate whether they will be happy or unhappy is going to live life like a yo-yo and never be happy even when the sun is out.

Which are you more like… a thermometer or a thermostat?  Do you determine your day or do you allow your day to determine you?  This is the only “today” you will have.  This very minute will never return for you to relive.  How you go through this moment, on this very day, is a choice you get to make. What will you decide?

There are 1,440 minutes in a day. Take a few of those minutes every day and share them with the ones you love, help a stranger or call an old friend. You will have plenty left over and will be glad you took the time. If a second can give someone a smile, just imagine what a few minutes can do.

When you can’t do things you used to do because of multiple sclerosis

Life changed a lot after multiple sclerosis came to live with me. Many emotions surfaced that I didn’t even know existed. Fears, doubts, worries…MS forced them all out into the open. It was a time in my life when chaos and confusion became the norm and I didn’t like it at all.

I guess some people would think that that’s a terrible thing for MS to do to me. I was sinking fast and feeling as though, at any given moment, I would drown. How could I let go of all the confusion swirling around me when I couldn’t even get dressed by myself? How was I to live my life when everything around me was in turmoil? How was I supposed to keep going?

I decided to make two different lists on my computer. At the top of one page I wrote “Things I can’t do” and began writing down everything I could think of. Things like work a full-time job, walk to the mailbox and sign my name without dropping the pen. I know some people will say that’s being too negative, but hang with me for a minute.

It was an easy list for me to compile and grew quicker than I thought possible…really quick. I was doing my best to hold back the tears as I saw my limitations and disease progression being documented in front of me.

I then switched my focus to the other page. At the top I wrote “Things I can do.” At first I just sat and stared at the blankness of it all. I had a hard time even coming up with one thing to fill the space. I decided to shut out everything around me and simply write down the first thing that popped into my head. That first thing just so happened to be “I can laugh.” That was the first thing I wrote down on my can-do list.

Before long, the list grew and eventually it outnumbered the can’t do list. I discovered during my list making that not only can I laugh, but I can nap more than once in a day, pimp out my wheelchair giving it a coolness factor, watch reruns of “I Love Lucy” at midnight as if I’ve never seen them before, and have an excuse for getting out of helping someone move. I realized I could also make up amazing new words, fall up the stairs not just down them, and still remember the theme song to the Animaniacs.

My limitations suddenly became smaller and smaller. I found I could do so much more than I gave myself credit for. I thought of many regular things too, like make a sandwich, change the sheets on my bed, cut my toenails, and vacuum the floor. Granted I may be slower doing them and complete them in very unconventional and creative ways, but I can do them and that’s what matters.

I had been so focused on the things I couldn’t do that I was missing all the things I was still capable of doing. That day my life changed. I started to look at life differently. I started to look at MS differently. It’s almost as if I went to the eye doctor and got a new pair of glasses. I was seeing everything brighter and with more clarity.

Which list are you focusing on? Are you more apt to put all your focus on the things you can’t do or on things you can do? Try it. Make your own list. Embrace the life that you have right now. Focus on what you CAN do…so focused that your can-do list far outweighs any other list you could possibly make. I think you will be amazed at just how many things you find you are capable of doing.

MS Gets on My NervesMS WarriorMS Superhero

 

Sometimes living with multiple sclerosis…all I can do is sit and cry

I remember as a kid taking time to lie in the grass, look up at the sky and discover a world of cloud shaped wonders. Once I saw a bunny eat an elephant, then it pooped out a bear. It seems the impossible can happen with a little bit of imagination and a sky full of clouds. I mean, who ever heard of a bunny eating an elephant before? But I saw it happen right before my very eyes.

Those carefree times don’t happen so much any more. I’m not as prone to pause life to look up at the sky in search of familiar shapes…but I should. I should slow down to enjoy life more and to allow myself to be me. We all should. Do you realize this very moment can never be refunded or returned? It has to be used as is, right now.

That’s not always so easy to do when dealing with a chronic illness. Especially when the challenges facing you seem bigger than life itself. The weakness in my legs and right arm have increased by a gazillion times over the past month. I am finding it harder and harder to hold onto things and the pain that accompanies the muscle tightness in my legs is killer. Like scream-as-loud-as-you-can-because-it-hurts pain. I do believe in allowing yourself the freedom to express your emotions whether they be tears, laughter or screams.

I remember one day sitting in my car in the parking lot at the grocery store screaming. I was still able to walk, but by time I had finished shopping and made my way back to the car, I was so weak that all I could do was sit and scream. So I did. I’m sure the shoppers passing by thought I was completely nuts. But I didn’t care. It helped me vent my frustrations. Then I took a deep breath, wiped away the tears and drove home feeling much better.

When facing difficult times, I have found some of my most therapeutic moments have been when I have taken the time to pause and allow myself to simply be. To allow the emotions to spill out for a moment, then take time to notice life like I did as a child. To look around at all the wonder that there truly is in life. To enjoy the tiny little kisses life gives us: the flowers swaying in the wind, the sound of children laughing, the smell of a freshly cut lawn. There’s a pause button in every day, you just have to choose to use it.

No matter what you are facing, whether it be difficulties in your marriage, relationship troubles, problems at work, stress over finances, or simply having an “MS is kicking my butt” kind of day…pause and take time to simply be! Twenty minutes…that’s all you need…just twenty minutes to yourself. Those twenty minutes will be worth the investment. Trust me.

Now I’m off to spend some time curled up in my favorite chair as I sip some coffee and watch the sun come up. It’s a new day filled with new possibilities.

Helping someone with multiple sclerosis…it’s the thought that counts. Well, actually no, it’s not.

The crazy thing about living with multiple sclerosis is that stress can make your disease progression worse, but trying to avoid stress can be stressful thus putting you into a perpetual cycle of stress. Ugh…how stressful.

For me, the disease itself is not what stresses me out. It may take me thirty minutes to pull myself up from the floor after I fall down or I may be unable to open an easy to open package even with the aid of a pair of scissors, a blow torch and a hand grenade, but I can work through those things given enough time and persistence.

What stresses me out is unreliable and untrustworthy people.

A few years ago when I began having trouble with my legs, a friend came to me and said she would like to take me to my physical therapy appointments. I was so grateful and thanked her for the offer. Driving for me was starting to become dangerous. The next day as I waited for her to pick me up, she was a no show. My phone calls to her went straight to voice mail, and because my therapy appointment was extremely important, I went ahead and drove myself.

I chalked it up to maybe she forgot. She returned my call while I was in therapy and left a message telling me she overslept that morning and apologized profusely. I forgave her and all was well between us.

A couple of days later, I called her early enough before my appointment as a reminder that I needed help. Once again my call went to voicemail, she didn’t show up so I drove myself. After that, even though I knew she wanted to help, her unreliability was not helpful so I found other ways to get to my appointments.

Just because someone has good intentions to do something doesn’t help a person in need. Good intentions may make the doer feel good about themselves. They can go through their day patting themselves on the back saying look what I’m going to do, but it’s their actions that actually make a difference.

Over the years, I have had people say that they will come to my house to cut my hair so I don’t have to make a trip to the hairdresser, want to set up a cleaning schedule to help me with the cleaning of my bathrooms and kitchen, say they want to meet up for coffee and conversation, promise to stop by once a month to wash my van, and even say they will come over to cut my grass every other week…all without any followthrough.

But it’s the thought that counts, right? Well, actually no, it’s not.

Good intentioned people mean well, but without actions to back them up, those intentions mean nothing. Sometimes it’s better to step away from people who can’t be trusted in order to keep your sanity. And that’s okay to do. One thing I have learned over the years is that I don’t want to be a well intentioned, no action person. If I can’t follow through on what I say I want to do, then I just won’t say it.

I think the non-disabled world doesn’t understand just how much the small things they say they will do for us in order to help, matter. My philosophy: If you say you are going to do something, do it. Occasional changes are totally fine, just don’t make it an every time thing. Words matters.

MS Gets on My NervesMS WarriorMS Superhero

 

What’s sick supposed to look like?

Could someone please tell me what sick is supposed to look like. I am apparently doing it all wrong. It’s amazing how many people tell me that I look good. I don’t know whether to be grateful that they care or sad that they don’t even attempt to understand my struggle. My outside is nothing but a costume covering a body filled with chaos. I must be wearing it well.

If you could take a look at my insides, my body is screaming at me all day long. From the moment I wake up until the time I go to bed I fight a battle. Sometimes I receive blows that send me toppling to the floor. Sometimes I hurt. Sometimes I cry. And sometimes I laugh so hard that I hurt and cry all at the same time. It’s not an easy existence, that’s for sure.

I don’t think the world will ever understand what we go through from the moment we wake up until the time we go to bed. Right now I am sitting on the couch hoping for the vertigo spinning in my head to find a place of calm, for my thoughts to collect themselves, for my hands to stop trembling, for my eyesight to see the world around me clearly, and for my body to gain some strength. There must be an energy zapper in my house somewhere but I can’t seem to find it.

When you are surrounded by people who just don’t get it, don’t lose heart. At times, multiple sclerosis can be a lonely disease to deal with. I hope you know that you aren’t alone in this fight. We are all in this together.

Take any hurtful comments people have made about how you should be living with MS and toss them to the side. Unless they are living in your body they just won’t get it. Don’t hold it against them. Most of the time I don’t get MS either, and I live with it.

Hold your head high today, that’s the only thing you need to be carrying…and wear it well. I’m proud of you.

MS Gets on My NervesMS WarriorMS Superhero

 

When taking a shower hurts

There are times I wish everyone would just go away and leave me alone so I can clear my head and distance myself from all the drama, arguments, pain and chaos in the world; to find such a place where I can cry as much as I need to and let out a scream or two from time to time—even if only for 5 minutes.

It’s not always easy finding that perfect spot. The place where no one else is hanging around to judge you for simply being you. For me, that place just so happens to be in my shower. Somehow I am able to have my own crying party in the solitude of the bathroom away from the world as water gushes down my face. It just seems easier to think and cry in the shower. I have washed many tears down the drain in my lifetime.

Lately though, showers haven’t been so freeing. This may sound weird to some of you, but much of the skin on my face, arms and legs have become so hypersensitive that even water hitting me from the shower head hurts. And when I say hurts…I mean HURTS!

I’ve been pointing the shower head to the side wall and filling a large cup with water to rinse the shampoo out of my hair and off my body. It makes bathing a bit more complicated, but if I don’t want to smell like a skunk I have to change and adapt to the strange things multiple sclerosis does to me.

It seems MS is good at making simple things, complicated. Who would have guessed that clipping your fingernails could become a near impossibility to accomplish all by yourself? Or that things like signing a check, picking up the mail, vacuuming, getting dressed, or even brushing your teeth require more time, energy and help than ever before?

I never really thought about doing those things in the past. I just did them without realizing how much I was truly taking for granted. But today, many things have become a challenge for me to complete. It’s as if each day, as I pull back the covers to get out of bed, I start my journey to the top of Mount Everest. I don’t always make it to the top as the day comes to a close, but I press on anyway.

Multiple Sclerosis is the disease that keeps on giving and taking away. If you ask me, it’s pretty selfish. But regardless, I refuse to let it limit or define me.

REMEMBER: You have this terrible, often times debilitating, disease called Multiple Sclerosis and it’s trying to take over your body, your life…but you are not MS. You are an amazingly courageous person that can still love, dream, laugh, and hope for a better tomorrow. I’m loving, dreaming, laughing and hoping with you.

MS Gets on My NervesMS WarriorMS Superhero

 

falling down

I never thought I would be living with a chronic illness

Something that never crossed my mind growing up was being diagnosed with multiple sclerosis. It wasn’t even something I thought about…or even knew about. I never thought a chronic illness would end up forcing me out of a career that I loved causing me to have to stay home much of the time because of mobility and accessibility difficulties and requiring regular visits from a home healthcare nurse to help me manage everyday life. My plans were so much bigger than that. I dreamed of greatness. I was going places. I was doing things. I had arrived.

It’s important for people to understand that our journey in life can change at any given moment…for the good or for the bad. It will be filled with victories and defeats. It will twist and wind through the mountains as well as plummet into sink holes and ravines.

Yes, the journey is important. It’s great to have goals and plans, to be able to reach for something bigger than yourself, to dream. But what I have found to be even more important than winning and losing, bigger than the highs and lows in life, is learning how to handle those victories and disappointments. That’s what matters. It’s not the actual winning or losing that counts, it’s how you win or lose.

I grew up in a huge football town. We took winning seriously and losing hard. When our team won we would have victory parties in the town square with everyone excited and partying through the night. When we lost, although the atmosphere would be more solemn and there would be a lack of cheers through the crowd, we still gathered and celebrated in our loss.

I learned how to win big and lose gracefully.

So when life threw me a curve ball and brought an end to everything that I thought was wonderful, instead of screaming “Why me?” or becoming bitter and angry at the dramatic change, I shifted with the change to find something to celebrate…even in my loss. I learned how to dance when the music stops.

Sure, I lost my mobility, strength, career and many friends, but I gained something through it all. I found that I was more resilient then I ever thought possible and that I was actually strong in my weakness. I learned how to smile in the pain.

How did I do that?

I decided that regardless of the disease that is ravaging my body and changing my life, that I would find something each day to be grateful for. It may be something little and at times minuscule, but it’s still something.

Today I’m grateful that I woke up to clear skies, birds singing outside my window and a fresh cup of coffee to be able to sip on as I write to you. I wish it was something more than that like I won the lottery or multiple sclerosis was cured while I slept, but I’ll take what I can get.

There is always something to celebrate in a day. Find yours and choose to rejoice in the small victories rather than wallow in the defeats…even if you find yourself laying in a hospital bed, sitting alone on the couch or trudging through rush-hour traffic.

Hold your head high and know that regardless of the speed bumps, the pitfalls and the unexpected turns, you can still find joy in the journey if you look hard enough.

The Myelin Munchers strike again

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!

Be a champion multiple sclerosis warrior

It’s really easy to get discouraged living with a chronic illness especially when your plans, dreams, and hopes have all been crushed, sometimes destroyed, changing your life more than you ever thought possible. Some of the changes are minor like a numb finger that annoys the heck out of you and some are more catastrophic like losing your eyesight or your ability to walk.

I have personally spent countless hours fighting, struggling and crying in an attempt to wiggle free from a disease that is holding me captive and I have yet to find long lasting relief. At different times, people have come along giving me the ole “pep talk” telling me that I have MS but MS doesn’t have me, and although I appreciate them taking the time to share, their words of encouragement seem to actually discourage me more than help. Maybe you’ve been there too.

Life just changed too much and I wasn’t prepared for the onslaught of changes that happened. I don’t know anyone that can be prepared for such a life-altering time. I have spent a lot of time over the months and years looking back at what once was, and in doing so I discovered that the true freedom I was seeking wasn’t in the what once was. It’s in the what will be. A place that I can be an active part of.

We each have a future ahead of us. Maybe not the future we wanted but there is still a future and we can’t move forward chained to the past looking back wishing things were different. We have to let go of what once was in order to live in the now and become a part of the what will be.

So take it from me… You’re hurting, not defeated. You’re broken, not destroyed. You’re overwhelmed, not conquered. You’re weak, not powerless. You have worth and tremendous value. You are perfect just as you are in an imperfect body. Now is not the time to give up, quit or give in. Swim through the tears and refuse to drown.

Never forget that warriors don’t always feel like champions but that is exactly what they are. Being a champion is a state of mind. Quitting is not a part of their vocabulary. You have to fight regardless of the difficulties ahead of you. Today belongs to you. Be the champion warrior you are deep inside. You’ve got what it takes.

MS Gets on My NervesMS WarriorMS Superhero

 

Overcoming the critical, negative thinkers when It comes to living with multiple sclerosis

In today’s world, we are constantly being made to believe that something is wrong with us because we have multiple sclerosis. Those of us using walking aids, wheelchairs and braces, for some reason are seen as attention seekers and broken. We move much too slow for this fast paced world and they seem to think something is wrong with that. And those who don’t need assistive devices; the stumbling, pain, emotional moments, and memory difficulties are viewed in the same way.

I can remember when I first started using a cane. I tried to hide it from people. Not out of embarrassment, but because of the responses it invoked in them. As soon as someone saw me walking with a cane, the questions began…too many questions, and ones that required exhausting explanations. I wasn’t ashamed of MS, I was simply tired of the constant ”I know what you need to do to make MS go away” responses and having to explain myself in return.

Now that I use a wheelchair, it’s a bit harder to hide my walking difficulties and I’ve gotten better at handling people’s looks, questions and comments. It still gets to me at times, but I’m okay with most people’s responses. I’ve come to understand that the negative comments made simply shows who they are as a person and has nothing to do with me at all. They are the flawed and faulty ones, not me.

The hardest thing for me is dealing with other MSers or other people living with a debilitating illness who can’t seem to believe it’s even possible to be positive in this mess. I actually feel sorry for them. For their narrow minded, judgmental, opinionated, critical way of thinking. These kinds of people are everywhere too. I can’t seem to get away from them, but I have learned clever way to respond to their smallness. For me, I let them know that I didn’t ask for their opinions and don’t need their permission to live my life my way. I’m sure this post with trigger some of them and put their thoughts into a tailspin.

It’s sad how negative some people can be. I can say that life is good and they will immediately tell me how wrong I am. I can share a moment of overcoming weakness and they will remind me of how weak my body actually is. I can talk about hope for tomorrow and they will try to pop that hope bubble with cynicism. I can share something positive online and they will twist it into a negative critical way of thinking. It never fails. I have come to realize that negative narrow minded people can’t see any good around them. There is no beauty, no possibility of good things happening, and no chance of a better day tomorrow. I wouldn’t want to live in that world.

One of the most important things I have learned is that multiple sclerosis has not made me less of a person. If anything, it has opened my eyes to seeing the real me and to seeing how broken this world really is. Yes, it takes me longer to do just about everything from checking the mail, to doing laundry, to even getting out of bed, but although I may not be fast at doing things and some things I can no longer do, I can still do a lot. It may take some creativity and some extra help, but I always find a way to do the things that some people think is impossible to do for a person with MS.

Ultimately, it would be wonderful to live in a world where disabilities took a back seat and negative thinking was obliterated but that day will probably never come. Regardless of what the world thinks, I want you to know that you are not broken, faulty, useless, or worthless. You are a beautifully, patched together, work of art covered in scars yet filled with amazing resilience and strength. You are not MS, a cane, a wheelchair, or an emotional mess. You are incredibly you! You can do anything you want to do it will just take some creative thinking and innovation. Don’t let the nay sayers rule the day. You can be positive in the chaos…there are a lot of other MSers who think that way too. Having negative moments is not bad. Living in negativity is.

MS Gets on My NervesMS WarriorMS Superhero