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An MS life isn’t so simple

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Most people don’t have to think about the things they are doing in life like answering the door when an unexpected visitor arrives until something like multiple sclerosis comes along and messes with our ability to do those things. Sure, we have to juggle things around in order to fit the sudden changes into our day and most of the time those shifts are not so simple to make. It’s that way with just about everything I do.

I’ve never been a big fan of running errands. Who would have thought the mundane chores of grocery shopping, going to the bank or the post office, and even picking up lunch could be so daunting. For me, in order to run errands, the timing has to be planned perfectly to ensure I have the energy for the remainder of my day. Not planning can end in disaster…meaning, can end in me vegging on the couch for hours just to regain enough strength to help me cope with the rest of my day. Some errands can set me back days…not just hours.

I have to think about doing things more than people should. For example, take the act of walking. That may seem like a strange thing to have to think about, but when I stand up to try and walk, I have to make sure I have the proper supports around me to keep from falling down. Then I have to concentrate on each step, movement, leg shift and foot lift. It takes GREAT effort and tremendous thought to do something as simple as walking and sometimes I don’t have the strength to do it. My muscles turn to jelly and won’t allow it.

If I need something in the kitchen, I can’t just jump up and get it. If I drop something on the floor, many times that item will remain where it landed until I have the strength to reach down and pick it up. By the way, that can mean it will remain on the floor for days. If someone comes to the front door, it takes so much energy to transfer to my wheelchair and make my way to the door only to find out it’s a solicitor wanting me to try their restaurant take-out service, that’s why most of the time I just don’t answer it.

When MS comes into our lives, the things most people take for granted become something we are grateful to still be able to do. We know that one day everything will change, the unexpected will happen, life will shift and simple will no longer be simple. No amount of planning prepares someone mentally for those kinds of changes.

If you find yourself frustrated because you need to fill up your gas tank on your way to work today or because you need to pick up some cheese for tomorrow’s spaghetti dinner, stop and remind yourself that you are still able to do those things…and be grateful for the little things no matter the inconvenience.

Don’t take anything you are still able to do for granted. Those things may take extra time to work through or you may have to get creative in the way you do them, but you will have accomplished something greater than great when you do complete it. You will have done something some people are no longer able to do.

Don’t give up, don’t give in and keep going while you can. That’s what makes you an MS Warrior. Plan B, C, D, and sometimes even Z, ZZ, and ZZZ have become a part of my everyday life and I’m okay with that. I will keep trying, keep going, and shift with the changes until I no longer can.

Living with a disability in an uncaring world

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There are all kinds of people in this world. Some will help you along the way while others will attempt to push boulders in your path. Living with a disability is not always easy. I have met the rude, uncaring type who watch as I struggle to open a heavy door rather than stepping in to help and the ones that choose to give me the death stare as I pull into the disabled parking spot at the grocery store only to turn away (hopefully in shame) as soon as they see me wheel my way out of my van in a powerchair.

But some of my disability is not visible. Most isn’t. People don’t see my pain, cognitive problems, bladder and bowel issues, unrelenting fatigue, spasticity, numbness, and so the many other unseen multiple sclerosis issues I deal with.  I have had people give me cures such as physical therapy classes, prayer, and positive thinking to fix me. All of these things have benefits, but they will not cure my disability.

I have difficulties getting ready in the morning. I often struggle to button things, even simple things. I use a button gadget to help out for shirts and pants if I’m wearing anything other than sweats and t-shirts. I also struggle to put on my socks, open jars and even easy-to-open packages. They can all be a challenge for me.

I’m thankful that I can still drive with a modified van for my powerchair so I can drive from my wheelchair, but even now I question my vision and slower response to traffic. I always take the back roads and navigate around busy areas because I don’t trust my own response time to sudden braking.

Everything is a response to how others are choosing to live around the disabled.  It’s sad really, that we as a society have become such critical, judgmental, selfish and uncaring people. That the disabled are invisible in their eyes. It can be seen everywhere you turn.

So, how do you function as a person with a disability in a world that cares more for itself than others? What do you do when people are rude? Mean? Angry? Do you respond in the same way as them…rudeness for rudeness? Hate for hate? Anger for anger?

That seems like the easy way, doesn’t it? It’s easy to throw out a few hurtful words in response to someones mean-spirited actions or words. But just because it’s easy doesn’t mean it’s the right thing to do.

How people act is not about you – it’s all about them. You can tell a lot about a person just by watching what they do, how they act, and what they say. But how you respond, that’s all you. Don’t let people’s wrongful, uncaring and bigoted actions cause you to stoop to their level. You are better than that. I know you don’t feel like it at times, but you are.

It takes all kinds of people to teach us how to become a person of character. Character is created through the struggles we face. It’s not something we are born with.

Today, if you are met with a challenge from someone’s rude and insensitive behavior, take a deep breath, allow your emotions to calm down, then respond as a person of character rather than being just like them. You be the bigger person…the better person. Show them, and yourself, that even though you have a disability, you are better than they are. You are greatness. You are more able-bodied than them.

Take the high road and leave them behind you in the dust of their own constructed chaos. Instead of wrestling with pigs, you’ll be soaring with eagles.

You didn’t cause multiple sclerosis in your life

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You didn’t cause multiple sclerosis in your life by the foods you choose to eat or not eat, by the supplements you choose to take or not take, by the DMTs you choose to take or not take, or even by the prayers you choose to pray or not pray. You didn’t do anything wrong or even live a bad life that brought about such terrible circumstances. That’s all just a bunch of crap… and it makes you feel like crap as well. No one deserves to be made to feel like that.

You didn’t cause it, can’t control it, and can’t cure it. It’s not your fault if other people leave you because of your illness or even because of how you are dealing with it. It’s not your fault that you are sick. Don’t even let that thought take ahold of your heart.

You are so much more than MS. It’s something you have been diagnosed with… and that’s all. It’s not your name and not who you are. Don’t forget that.

You don’t have to hide the fact that you have MS in order to make others comfortable and you don’t have to be an inspiration to others every time you share your life story. Many times you just want to scream and wish others could see just how difficult an MS life is. They never see the pain that overwhelms you, the despair that sets in at such inopportune moments, the hopelessness you feel at times, or even the tears you wipe away when no one is around.

You’re allowed to stay in bed if you can’t get up to do anything but go to the bathroom. You’re allowed to have bad days. You’re allowed to wish life was different. You’re allowed to miss the old you and all the things you used to be able to do.

But one thing you have to do after a short time of pity-party moments is remind yourself just how amazing you actually are. Take a break from life, take a deep breath and take care of you. That’s not being selfish, that’s caring and being kind. As airlines like to remind us, it’s important to put on your own oxygen mask before helping others do the same because if you run out of air, it becomes a lot harder to help anyone, including yourself. Treat yourself as a friend.

Home should be your safe place, your sanctuary. Consider filling yours with what brings you joy, whether it’s live plants, pictures of happy memories, or art you love to look at and remember to smile. It always helps.

You will get through the tough times and come out with a strength that you never realized you had. You’re getting stronger even right now. Hang in there. You got this.

A fearless warrior

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It makes me sad to think about all of the turmoil and chaos that is surrounding us in the world today. No matter where you are, you can’t seem to get away from it. It’s in front of you when you turn on the news, when you get online to try and find something worth reading, and even when you turn on the radio for a pick-me-up song. Such despair and uncertainty abounds.

I don’t have any answers for what is taking place in the world other than don’t react in fear. Fear is the worst thing you can ever hold on to. I’m not talking about fear of public speaking, escalators, or even spiders. Those are some my legitimate fears but not something that keeps me awake at night.

No, it’s deeper fears like war, famine, and even early death than will disturb any persons inner peace. I have found that I need to become fearless. Why? Because fearless people are not afraid to be afraid. They are able to take their fears as a warning sign and use them to get a better perspective of what is actually taking place around them… both the irrationally perceived problems and the real ones.

Every person experiences fear differently. You are not alone in this. Fear actually affects more people than the common cold. That’s because it’s a human experience. If I let fear rule me I would be cowering in the corner counting down time to my last breath. One thing you have to be mindful of is don’t let fear prevent you from actually living. That shouldn’t happen.

Fear reminds me that there is beauty all around in the shadows. It’s just hiding hoping to not be discovered. The beauty in the shadows is worth fighting for. No matter how bad thing can get, I will rise above the situation and be triumphant. I’m reminded that I’m a warrior regardless of what anyone else thinks. That I’m not going down with the ship. That I’m strong, mighty and capable of anything I put my mind to. And so are you. You’ve got this. Don’t lock yourself away in fear. Come out into the open, turn your face to the sun… and live. There is hope for a better day.

When it feels like everything is over, when the last bit of hope and light starts slipping away faster than you can chase it, it’s at that time you find you are able to gather enough strength to carry on. It’s that little voice you’ve been hearing in the back of your heart and mind to not quit and never give in. Listen to it. It knows more than you realize. You’ve got this. Become a fearless warrior with me.

Listen to your body and don’t overdo it

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My favorite time of year is finally here. My lawn is getting greener and greener due to the rain we’ve been having. It is begging to be cut. I’m actually feeling good enough to run my riding mower and get out in the sun for my adventure of the day but it’s raining again this morning.

I can already tell it’s going to be easier to manage a riding mower without a suprapubic catheter urine bag to lug around. I’m really liking having a urostomy. I think it’s one of the best surgeries I’ve ever had. It’s so freeing for me. I can move about without concern of what’s coming with me. And the pain is finally over. Yippee.

Yesterday I pulled out my weed whacker to edge my driveway and sidewalk to get the grass under control. I was able to cut the time in half from what it took me last year. I moved about better. I use my old powerchair to ride around the property. I call it my powerlawnchair.

There are a lot of projects I want to get done this year but I know I need to be cautious and not try to tackle them all at once. I’m going to take them one at a time and give myself lots of breaks.

That’s the important part. Listen to your body and don’t overdo it. You know your body best. I have to remember to stop before it starts to scream at me. If it screams, I’m done for days and days.

My right side is still giving me difficulties due to increased weakness but I’ve gotten pretty good at doing everything left handed. Even when raking the lawn I actually rake it using my right shoulder and left hand. Odd combination but it works for me. Sometimes you just gotta do what you gotta do… no matter how weird it may look.

One things for sure, you will always find me out in my yard doing something to beautify things. My next project is to replace the solar powered lights around my front entranceway. It always looks so nice all lit up at night. I bought some replacement ones last year all ready for me to get out and tackle the task.

I love living by myself even when days are hard. I love looking out my windows at all of nature that surrounds my house as the deer and bunny rabbits trapes around. I won’t stop loving life regardless of how hard things get or how impossible life becomes. I will always find something to make me smile!

I’m fighting a monster called multiple sclerosis

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I have learned more about myself than I ever thought possible because of a monster called multiple sclerosis.

I’m braver now even though I didn’t know MS existed in my life until I was in my 40’s. I fought through mind numbing pain, muscle weakness and tears. I fought it daily with a sword in my hand while yelling, “Hiyah!”.

I’m stronger now because I had to be. My choice was fight or give up, but I’m not a quitter. That’s just not a part of my DNA. So fight, I did. I learned how to use a cane, then a walker and now a wheelchair. I learned what foods benefit my body the most and what supplements help me to cope.

I’m happier now because I’ve discovered what really matters most in life. It’s crazy how that happens. You face down a beast like MS and discover a strength that you didn’t even know you had and that many things in life aren’t really that important anymore. Hold onto true friends and family, and let the other things go. You don’t need the extra baggage. It will only weigh you down and hold you back.

I stand taller, figuratively, because I am a survivor. Yes, there will be struggles and pain. There will be times I may be fearful of tomorrow or even of the next step I need to take, but I will push to the end and give it I’ve got.

Remember, you are not alone in this fight. The great Rocky Balboa said, “The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward.”

Come fight with me.

Don’t treat me like I’m different

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My body is broken and sometimes my mind is too. My advice is don’t give up on life because everything has changed. If you’ve had a bad experience with a bad doctor, you didn’t cause that. There’s absolutely no shame in trying to find a new doctor who you know specializes in working with multiple sclerosis. That’s actually the reason why I was able to get my diagnosis. I went to a neurologist that friends had recommended.

I asked them, “hey, do you know a doctor in this area who specializes in MS?” I found that doctor and saw that they took my insurance. I actually ended up crying when the doctor said, “Oh no, I don’t need to do a ton of extra tests on you. I know exactly what you are dealing with based on your past tests and MRIs. Let’s try a different approach and see if it helps you.”

That day, I was having a hard time standing up and wound up hanging onto walls just to get to my first appointment. The doctor could see how hard it was for me. It was amazing to find a doctor that actually cared about me and what I was dealing with. Sad to say many people don’t find one.

Even though MS is not terminal, it’s a disease that will worsen over time. Before you judge me for my choices, remember that I have fought this battle alone. If you haven’t experienced this for yourself you’ll never know what decisions you would have made and until you’ve walked in my shoes or seen how far I’ve come on this broken path, know that I’ve done the best I can with what I have.

Don’t treat me like I’m different, that’s just not fair to do. I’m still ME and I have feelings too. Think before you speak, listen before you act. I’m not a statistic. I’m not a number or a diagnosis. I’m a person with different abilities taking on a different world. I prove everyday that I’m a miracle and will never give up.

 

I’m Raising $500 for the annual website costs of Positive Living With MS. Any amount would be a tremendous blessing and give this blog further reach to people living with multiple sclerosis. Caregivers, family members and fellow MSers have always enjoyed reading my blog. Many say that they would miss me terribly if I would ever go away. That I am a light of hope and encouragement that helps get them through their day. I was diagnosed with PPMS myself in 2013. Most of my writing is about my own experiences. I try to mix in humor as well as the reality of what life is like living with MS.

Show your support by going to this link

 

Shake it off and keep going

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I’m back after the holidays. Am I supposed to feel rested? It didn’t work out that way for me. I have no idea what rested actually feels like, but I’m glad I’m back. Hope you didn’t miss me too much. (grin)

I heard a story about a farmer named John that was out feeding his animals on the farm when he noticed that his beloved donkey, Freddy, was missing. He walked all over the fields but couldn’t find him anywhere. Eventually he stood still for a moment, and he could hear the donkey wailing in the distance. He followed the sound until he came to the well. He leaned over and saw Freddy at the bottom.

Farmer John could see the distress on the donkey’s face and tried his best to get him out of the deep hole. He tried ropes, ladders, and planks, but nothing worked. The farmer sent down water and food to keep Freddy hydrated and fed while he could to make a plan to get him out of the well.

After three days, John gave up because he realized that there was no way for him to get Freddy out of the well. He spent one more day trying to save him but after the fourth day of trying unsuccessfully to retrieve Freddy from the well, he gave up. He called his neighbors who were also unsuccessful.

The farmer decided that the donkey was old and the well was already dry and needed to be covered anyway; that it really wasn’t worth pulling the donkey out of the well. The neighbors joined John in using shovels to throw dirt down with shovels. They were going to fill the well up and bury Freddy in it.

At first, the donkey cried horribly as he realized that the farmer had given up and was going to bury him while he was still in the well. Then, all those shoveling dirt closed their ears not to hear the sad wails of Freddy.

But then Freddy stopped crying, and everyone peered over the edge to see why he became silent. But, instead, they saw the donkey standing still, and as they shoveled, he shook the ground off his back and stepped on it.

Freddy continued to do this, as they shoveled he took a step up until he was level with the ground. Then, he looked at them, gave a neigh, and ran off to the pasture.

Like Freddy, sometimes we are given a hard knock in life, and people try to help but they eventually give up on us. But it is important to keep going, shake it off and take a step up until you are out of the deepest of wells.

Life is going to throw dirt on you, all kinds of dirt… the trick to getting out of the hole is to shake it off and use it to step up. Each of our problems are steppingstone.

Even the most impossible of situations are possible. Maybe not in the way we want them to be or how we think we need them to be, but somehow they work out. You have already faced some nearly impossible times and come through them maybe a little bruised and broken, but you made it. When you see them show up in the future, don’t panic. Take a deep breath, and hold on.

For me, my faith in God gives me the strength to keep going. At the end of the day, most of our regrets will lie in the things that we were too afraid to try. Fear is one of the biggest deterrents of success. If you never get the courage to try, you will always fail. Will you give up after a few setbacks or will you shake it off and keep going?

Each person is different in how they deal with the impossible, just know that you have within you the strength to go on. Shake it off, step up, and keep going.

Multiple Sclerosis has taught me the value of living

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Multiple Sclerosis has taught me the value and importance of living…really living. In looking back on my own journey, I have noticed the shift I made from being overly focused on achievements and promotions to building lasting friendships and choosing to enjoy the little things in life. Things like rainy days, moments of quiet, giggles and laughter, sunsets, butterfly kisses, “thinking of you” texts, and of course the much appreciated cup of coffee.

For me, spending time with the people I love, giving of myself to help the less fortunate, and spending some much needed time taking care of myself…those are the things that are important. If anything, MS has given my life a greater purpose because it has opened my eyes to seeing the value of life itself.

The following is the philosophy of Charles Schultz, the creator of the ‘Peanuts’ comic strip. You don’t have to actually answer the questions. Just read them through and you’ll get the point.

1. Name the five wealthiest people in the world.
2. Name the last five Heisman Trophy winners.
3. Name the last five winners of the Miss America.
4. Name ten people who have won the Nobel or Pulitzer Prize.
5. Name the last half dozen Academy Award winners for best actor and actress.
6. Name the last decade’s worth of World Series winners.

How did you do?

The point is that none of us remember the headliners of yesterday. These are no second-rate achievers. They are the best in their fields. But the applause dies. Awards tarnish. Achievements are forgotten. Accolades and certificates are buried with their owners.

Here’s another quiz. See how you do on this one:

1. List a few teachers who aided your journey through school.
2. Name three friends who have helped you through a difficult time.
3. Name five people who have taught you something worthwhile.
4. Think of a few people who have made you feel appreciated and special.
5. Think of five people you enjoy spending time with.

Easier?

The lesson: The people who make a difference in your life are not the ones with the most credentials, the most money, or the most awards. They are the ones that care.

What do you spend your time on? The key thing is to always remember that no matter what happens in life or how bad things may get, surrounding yourself with people who care and love you is what’s important. That’s what gets you through your day.

The people you remember are the ones that made a personal difference in your life. Strive to be that kind of person for others. You won’t be able to change the world, but if you make a difference in just one person’s life…that’s the world to them.

Let your life shine through the chaos of MS

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When multiple sclerosis became a part of my life, just trying to come to terms with such a life altering disease was difficult. I went through periods of denial, anger, depression, why-me moments, and finally acceptance. Acceptance was hard. I had to re-evaluate my entire life.

Whenever something goes wrong in life, the first thing we do is look for someone to blame. Sometimes it’s God, sometimes it’s the people around us, sometimes it’s the doctors, but deep inside we have a sense of regret thinking we caused it by our own life choices. The helplessness we feel makes it hard to accept things the way they are. It breaks our heart. Were we going to be able to make room for MS in our life?

A person’s life can become completely destroyed when MS shows up. It has this way of flipping our world on its head, spinning us around and around creating dizzying chaos and confusion, and then leaving us to figure things out… many times all on our own.

That kind of whirlwind hurts. Some people may only experienced a slight amount of discomfort while others are left holding pieces of a shattered mess in their hands. It breaks you down no matter how strong you thinks you are.

If you look really close at my life, you will see the cracks and missing pieces from some of the difficulties I have been through because of MS. Things like increased progression, having to use a wheelchair, needing help for things most of the world takes for granted, ending a much loved career, financial struggles, and losing friendships.

My last MRI gave me bad news which has altered my future plans. There is moderate periventricular white matter disease, central cerebral atrophy which has progressed, over 20 mainly pericallosal as well as periventricular old burnt-out plaques, and a whole bunch of doctor speak that I don’t quite understand.

What does all that mean? MS is the reason for my trouble in learning or remembering things, having difficulty with problem solving, slowed thinking, depression, balance issues, and the reason I have almost non-existent trunk control which means I fall over easily even while trying to sit up. I weeble wobble in my chair.

My MS difficulties are much more pronounce than I expected at this time in my life but I refuse to be defeated. Even with all the issues I now face, there is still beauty in my life that shines through all the confusion.

You may be in the middle of a relapse heart right now. I know how badly it can hurt, but you are going to get through this and your life is going to become a thing of beauty. Don’t stuff the pain down deep inside trying to hide it away. Let the emotions out as they happen heal. Out of sight, out of mind doesn’t actually work.

Let it all out so you can heal. It takes time, but it will happen. Be patient with yourself and take it slow. Your life is a beautiful thing. Give yourself time to handle what is going on then let your life shine through the chaos.