cry

But I can’t do that anymore…

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 minute, I wound 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 take out two pieces of paper and make two different lists. At the top of one page I wrote “Things I can no longer do” and began writing down everything I could think of. It was an easy list to make and grew quick…really quick. I filled up one side entirely and was doing my best to hold back the tears as I saw my dreams and perceived future written down in front of me, lost and gone forever.

I then switched my focus to the other piece of paper. 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-no-longer-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, and have an excuse for getting out of helping someone move. I realize I could also make up amazing new words, fall up the steps of my stairs, 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 compete 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. Get out some paper and make two lists. 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 are capable of doing.

I get hurt in some of the weirdest ways

I have noticed that people living with multiple sclerosis get hurt in some of the weirdest ways. I know for me, I’ve had my fair share of bruises, broken bones and crazy predicaments that I wouldn’t have experienced any other way.

A couple of years ago I decided to sit out on my back porch to enjoy the beautiful day we were having. It was a little chilly out, but still a pretty day. I was barefoot, which normally I am, and took the few steps needed to get to my lawn chair.

As I walked out, I stepped on a tiny piece of wood that jabbed into my foot. I could feel the slight change in elevation under my foot, but no pain since much of that foot is numb. I checked the bottom of my foot and although it was bleeding, all seemed okay.

After a week, I noticed the sore it had created just wasn’t getting better. I waited probably way to long, but eventually went to the doctor to get it checked out. The x-rays were inconclusive so surgery was ordered since whatever was going on was much too deep for an office visit to remedy.

The doctor told me that when she cut into that area of my foot, sure enough, there was a piece of wood embedded super deep into my foot. I was told that had I not had it removed, it could have gotten really bad. I’m glad I had a doctor that was willing to do all that was needed to find out what was going on.

Yesterday I had another foot accident. (For some reason my feet seem to be the things I hurt the most.) I was in the bathroom transferring from my shower chair to my wheelchair when my feet slipped on the wet tiles. My body came crashing to the ground and my right foot jammed against the corner of the sink cabinet.

It was excruciatingly painful and when I looked at my foot, my third toe on my right foot was crooked…like really bad crooked. After making my way up from the floor and getting dressed, I tried to determine what was wrong. That toe seems completely broken and won’t move back to a normal position. I have an appointment to see the doctor today so we’ll see what’s up. Ugh…MS!

I have sprained ankles and wrists, gotten burned, cut myself, and broken bones all because my body wouldn’t cooperate. But you know what? I keep going. Sure I may have to lay up in the bed more than some people do, I may spend too much time in waiting rooms and doctor’s offices, I may require help doing some of the simplest of things ever, but I’m still going strong.

You can’t let your weaknesses and limitations stop you from living. They may slow you down but don’t let your slowness keep you from finding enjoyment in your day. Find your smile today…and if you can’t find one just imagine me sprawled out on the floor buck naked having to call a neighbor to come and help me get up. That will either make you laugh out loud or run away screaming in fright! Either way it will make your day better.

What stresses me out is unreliable and untrustworthy people

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 ten 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 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 would like to 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. Your word matters.

you are

You are a somebody

I had an extremely difficult time watching my career come to an end. It was the last thing I ever thought would happen, so when it did I took it hard. I did all I could to hide my cognitive problems from others. I fumbled my way through each day knowing that life was changing yet refusing to acknowledge those changes.

As a computer programmer, I could meet any challenge thrown at me and beat it. I developed some amazing systems and was proud of my accomplishments. When Multiple Sclerosis came along and began disrupting those abilities, I didn’t like it one bit. I would try programming but just couldn’t get my brain to work.

I struggled with everyday things too like trying to remember if I had washed my hair while in the shower, so I would wash it again just in case or forgetting I had something in the oven even with a timer set. Who could burn a casserole with a wonderful smell filling the house and a timer going off? Me!!! So, to get confused looking at code, the very code I, at one time, could decipher in my sleep…that was devastating.

The day I made my decision to resign, I cried. Not just one tear either, a flood and an ocean of tears. I covered it up well, but my heart was broken. Having to walk away from my job made me feel like a failure.

It’s been close to three years now and I still miss my job. I find myself trying to do in depth programing from time to time, but can’t seem to do it without a cheat sheet for even the simplest of tasks. I’m still smart, I’m still me…I’m still a somebody.

I do my best to stay focused on the big picture. My career wasn’t who I was. It was only a part of my life. I am so much more than the things I can do…and so are you. For some reason, we put our identity in things that don’t really determine who we are. You aren’t a chef, or a fireman, or a store clerk, or a nurse. You are an amazing, wonderful, strong, inspiring person who has a lot to give even in your weakest moments.

I know it’s scary, the unknown. “How will I? How can I? What about? What next?” I know, it’s terrifying to take a step forward when you can’t even see the road in front of you. But regardless of how you feel, I can tell you with confidence that you aren’t a failure, stupid or broken. You are a somebody…and being a somebody is the best thing anybody could ever be.

Surprise…it’s a new Multiple Sclerosis symptom

I love surprises. Well, the good kind of surprises. Things like an unexpected gift, a found 5 dollar bill in your jeans pocket that you didn’t know was there, a pay-it-forward drink at the coffee shop, or waking up to a clean kitchen that you left dirty before going to bed. I welcome those kind of surprises any day of the week.

The kind I don’t like, especially with multiple sclerosis, are the sudden new symptoms that just show up out of the blue and then never go away. That’s always how mine seem to happen.

Since last week a numbness has been increasing across the upper left side of my face and head. It is to the point now that I can’t feel a part of my forehead and even my left eyeball. It’s kind of weird being numb there, almost like someone gave me a shot at the dentist to numb my mouth only they missed my mouth and injected it into my head instead.

Thankfully I can still blink my eye and move the muscles in my face, but it sure is strange to rub that part of my face and not feel it. I find myself being extra cautious when I do so I don’t accidentally scratch myself.

I’m sure the doctor will put me on a round of steroids to slow down the unwelcome activity in my brain that is causing this new surprise. I would love it if MS would just take a vacation already. Better yet, if while on vacation it got eaten by a shark, hit by an astroid and then vaporized in a sudden explosive lava flow. (You can’t be too cautious in wishing for just one disaster to happen.)

But, since that won’t be happening any time soon I am going to have to get used to my new normal. You’d think I’d be used to doing that by now. Trust me, you never get there.

I’ve already had my moment of tears. I seem to always have those moments while in the shower. I don’t know why that happens, but the shower has become my crying spot. Maybe it’s because it’s easier to wash my tears aways and blow my nose with a constant stream of water running down my head.

Regardless of everything happening in my life, I’m going to keep pushing through. You have to do the same thing. Don’t let new progression, new symptoms, or new changes keep you down. There’s always hope.

Even though I don’t personally know you, I can tell you that I genuinely love you and everything is truly going to be okay. Don’t allow yourself to become overwhelmed by the mountain in front of you or the long journey ahead, choose to move forward one step at a time…one moment at a time. You got this. I believe in you, am hoping with you and know that there are better days ahead.

bucket

There’s a hole in my bucket

The world is good at pointing out what’s wrong with our lives. If you’re anything like me, you have buckets full of mistakes that can be pulled out at any time to show how imperfect you really are. The only problem is, my bucket is imperfect too…it leaks.

It is impossible to go through life without making mistakes. You can’t do it and neither can I. One thing I know that I can count on is that I will mess up. I will make wrong choices. I will disappoint people and even disappoint myself. Failure is normal, whatever normal actually is. I don’t know why we try to cover it up and hide away our flaws and mistakes. Being less than perfect is just a part of being human.

To the world, our MS body is a failure. The nerves in our brain and spine have chosen to fail us causing difficulties we would rather not have, but the mistake our body makes in destroying myelin is not our mistake. Don’t, even for a moment, think you have done something to deserve MS or that you have caused it yourself, because you haven’t.

No matter what happens today, don’t believe that voice trying to tell you that you are a failure. You are not your body’s weakness. You are not your MS. That is just part of the packaging you have to work with, as flawed as that may be.

Count each day you get through as a victory. You have had victory after victory already. Today will be another one. You may finish exhausted, worn out and weary as the sun goes down, but you are going to make it.

Instead of focusing today on the things you can’t do, look at what you can. Take a break from the pressure the world puts on you to be perfect and simply be you…and never give up.

Being brave is something you do every day

You are brave. So much braver, stronger, tougher and courageous than you tell yourself. Don’t listen to that little voice in your head that keeps trying to convince you otherwise. If that voice would be quiet for just one second, you would hear your brave roaring. It’s inside of you…deep down.

Sure you may get weary. You may wish upon wishes that life was different and that Multiple Sclerosis wasn’t a part of your struggles. You may even feel weak and powerless because your body won’t cooperate with you, but that doesn’t make you any less brave.

Being brave has nothing to do with being fearless or never crumbling to the floor. It’s not a feeling. It’s something you do.

It’s about facing the day, tears and all, and pushing through the difficulties. It’s about taking the next step forward even if you have to do it sitting down. It’s about facing MS with bruised up shins, muddied knees and elbows, and limping as you go. It’s about falling down and getting back up just to do it all over again.

My morning started out in tears because I was having trouble simply getting out of bed but then I realized that regardless of my circumstances, regardless of the struggle, I am brave just in trying. I can’t give up, especially when times are tough. That’s when my brave shines the most. And the same goes for you.

Trust me when I say that you are brave. There is nothing about today that you can’t overcome or that you aren’t strong enough to handle. Nothing. Absolutely nothing! Don’t let anyone tell you differently…especially yourself. You are brave and today I can hear you roar!

Life changes with Multiple Sclerosis

Have you ever had this happen…a friend calls you up to invite you over for a get together. You would love to go but the challenge of a long drive, late hours, and lack of accessibility makes the decision for you. You politely decline but inside feel miserable because you realize how limiting your life has become.

There are times when having a disability is a great thing because you have an excuse to decline an invitation to a party you have no interest in going to or a reason to not help a friend move the furniture in their house. But it’s sad when you can’t join in on something you really want to be a part of.

Life changes with MS…which sucks. You find yourself making decisions based on how difficult it is to climb the stairs rather than on whether you have to pick up a gift and a platter of food on the way. The depression that weights on you can be hard to deal with and even overwhelming at times. It’s not an easy thing to come to terms with.

At this time of year it can become extra hard because you see people going out enjoying the holidays, spending time together shopping, having late night dinner parties…doing all the able-bodied things people do that you are no longer capable of doing. It seems the winter months have this way of ushering in a sadness along with the cold and the snow.

Multiple Sclerosis depression is a real thing. It has this way of sneaking up on you and before you know it you find yourself sinking in a sea of despair. I’ve been there myself. It can become overwhelming if you allow your thoughts to rule the day and slip into the “why me” places.

I’ve heard people say that I have no reason to be sad because someone else may have it worse than me, but that would be the same as saying I can’t be happy because someone else might have it better. That’s just not a valid argument.

I know it’s hard, but try and find something good in the chaos. Take up a new hobby. Learn to paint, write or play an instrument. Do volunteer work. Adopt a pet that needs a good home. There is still a lot of living to be done even with MS hanging around.

What’s truly stopping me from enjoying my life? Me. I am the only one hindering myself. With that realization I have decided that whatever comes my way, if I can’t change what is happening in my life, I can let go and change me.

I woke up exhausted and moving slow

Is it time for bed yet? That was my first thought as I woke up this morning. I glanced at the clock and it was proudly displaying 6:30 AM. That’s way too far away from the sun going down and me climbing back into bed. I yawned, tried to stretch and yawned some more but only seconds passed. Now the clock says it’s 6:31 AM. At least it’s one minute closer. Maybe I can just lie here another 720 minutes.

Some days I wake up already knowing how my body is going to behave, and I can already tell that mine is going to be moving slow…turtle slow. I have yet to wake up feeling refreshed and chipper, even after my morning cup of coffee. As a matter of fact, I haven’t felt rested in years. I’m not even sure what that feels like anymore.

I used to hate the kind of people who wake up immediately bouncing around with gusto as soon as they open their eyes. Right about now I wish I had a teeny tiny bit of their morning pep and bounce.

So, how do you function when your body won’t function? How do you pull together enough energy to get up and get yourself dressed? What do you do when you have to drag your body through the day as it rebels at any and every form of movement? How do you win the fight with your own body?

People don’t quite understand that kind of MS dilemma and how difficult those questions are to answer. They see our bodies and think that nothing is wrong with us. If only they could take a look at the damage hidden beneath our skin and tucked away in our Central Nervous System. It would tell a completely different story because that’s where the chaos lives.

When your legs are having trouble placing one foot in front of the other to take you where you need to go or your hands contain zero strength as everything you hold comes crashing to the floor, don’t let your inability to do something keep you from living your day.

There’s more to living than walking or holding onto things. Sure MS gets in the way of just about everything we do, but don’t let it steal the one thing that will help you through your day…hope.

Hope for a better today than you had yesterday. Hope for more strength when you are at your weakest. Hope for a day of less pain and smaller struggles. Hope for the tears to be dried up and smiles to take their place. Hope for real, genuine friends to become a part of your journey. Hope for hope!

Be kind to yourself today. Don’t push too hard, too fast. Know your limits and say “no” to people demanding more. No is not a dirty word. It’s a word that will save you from many stressful and unnecessary situations. You are in charge of your day. You are the boss, the head honcho, the big cheese of your body. You get to set the pace, no matter how slow it may seem to others.

Remember, being slow isn’t a bad thing. Don’t forget about the tortoise and the hare. Both set off to win a race which the hare should have had no problems in winning, but the tortoise crossed the finish line first. Be the tortoise today. Use your smarts over your bodies abilities and cross the finish line at the end of the day a winner.

chaos

Living with Multiple Sclerosis without losing your mind

My emotions have this tendency to run wild. I find myself crying for no reason, laughing at ridiculous things and getting mad at nothing…absolutely nothing. My brain has mixed things up and doesn’t seem to know the difference between a laugh and a tear.

I wish I could say it was just me being me and life being life, but multiple sclerosis is at fault. Somewhere, deep in my brain, the area that controls my emotions has been damaged. The communication of my feelings and the need to express them is a complete mangled mess.

Life changes a lot with MS. It changes in ways we expect and also in ways we never knew possible. Sometimes those changes happen all at once and other times they simply pile up, little by little, until we find ourselves surrounded by a sea of change.

That’s me at the moment…overwhelmed in a torrential storm. It feels like my world has been knocked off its axis and is bouncing around inside some perpetual game of universe pong. I just want things to slow down a bit. It doesn’t have to stop entirely, I just need the brakes put on and for things to stop spinning out of control for awhile.

I’m sure you understand the feeling all to well yourself. Today you may be facing a boatload of MS changes, financial struggles, relationship problems, emotional chaos, or a little of them all wrapped up into one. That’s a lot for anyone to have to face.

I hope you know you aren’t alone in this journey. I may not understand your exact struggles, but I understand what it feels like to ache so deep inside that you can’t put the pain into words; to dread a new day because you just aren’t sure what the day is going to bring; to wake up in the morning wishing you could just go back to bed and wake up from the nightmare you find yourself in; to watch your dreams get crushed and feel as if you will never be able to dream again.

I mean it when I say I’m standing with you. You can vent, you can cry, you can spill out every emotion that’s been bottled up inside and I won’t judge you nor look at you with that weird blank stare so many of us see on others faces when we try to explain what’s happening inside.

Yes, you may be living with multiple sclerosis, you may have a crazy mixed-up life, your emotions may go bonkers on you, your days may be spinning out of control, but regardless of how things look today, there is always hope for a better tomorrow.

Life is tough. Anyone who says otherwise isn’t really living. But even though we face some awful things in life, there are great things happening that show up and bring relief to the pain. And wouldn’t you know it, they happen at the very moment you feel as if you’re about to fall apart.

Things like a “thinking of you” card in the mail from a dear friend, a fistful of weeds and smiles from a child, your favorite song playing on the radio at just the right moment, a piece of chocolate, ten minutes of silence, coffee with a friend…they are happening all around you, you just have to pause for a moment to notice them.

Today may be a tough day but don’t let the struggle cloud those sweet moments that are happening in your life. Pause and breathe. Find something to be thankful for. Look around. There is some good in the chaos happening around you. You are going to make it through this storm. Hang in there and let those sweet pauses give you strength to get through the rest of your day.