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I always say MS is a disease that keeps on taking

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Have you ever wondered if someone else has the same outlook as you regarding multiple sclerosis and all the troubles it brings to your life? Does someone think the same thoughts as you? Or maybe you look at your life and decide you’re all alone in your opinions about life with MS. Voicing a thought that’s contrary to popular opinion can be funny at its best, or terrifying and nerve-wracking at its worst. But having an unpopular opinion that goes against the status quo may not be as uncommon as you think. You just may be the only one brave enough to say it.

Many people don’t like talking about how much a person’s life changes when a diagnosis of MS comes along or how much their life is actually spinning out of control. It’s hard facing the MS monster at every waking moment. Just because people aren’t talking about it or choose to hide their struggle, doesn’t mean it’s not real.

Suicide rates among those living with MS are twice as high as those of the general population. The reason? Because our symptoms continually progress (meaning they keep getting worse) making life increasingly more difficult. We face things like numb body parts, fatigue, dizziness, vision loss, pain, emotional changes, decreased mobility, and a lack of understanding from others. We lose jobs, friendships, financial stability and independence. There are countless challenges in every day life, and as time passes they seem to only worsen.

It’s kind of like watching a grape slowly withering on the vine even though it’s given plenty of water, sunshine and care. We experience changes in our body and feel them with such intensity that it’s hard to even put our disease progression into words. We can actually feel the numbness, pain and difficulties creeping up our legs, arms and entire body to where one day it may just be our big toe that we can’t feel and the next it’s our entire leg.

Coping with something that continues to progress over time brings on feelings of hopelessness, stress, despair, and a host of other mixed up emotions. All we want is to fit in, get our life back, and live that carefree life that MS stole from us. I always say MS is the disease that keeps on taking.

Who wouldn’t get depressed knowing that their body was destructing from the inside, out? Sometimes it’s easy to face the struggle, but many days it’s a battle between sanity and trying to hold onto our dreams. It’s when those dreams begin to fade and all we have left is the pain and confusion, that’s when the tears begin to flow and depression rears its ugly head.

You see our smiles, hear our laughter and admire our strength, but in actuality we know those things are only hiding the pain… both the emotional and physical pain.

If you are having a wonderful day, please don’t criticize someone who isn’t. Enjoy your day and share your sunshine with others. If you’re feeling defeated and frightened of the future, reach out to people for help, and if they won’t listen to your pain, questions and doubts, don’t be too ashamed to talk with a counselor or psychologist. There’s nothing wrong with needing help with your inner struggle. We all have them. It’s just sometimes easier to face the pain with someone else’s help than trying to do it all alone.

Don’t give in to this relentless disease. We are all here for you, standing with you, reaching out in our own kind of way to help. We may not be perfect, life may be a mess, but you are loved, cherished, needed and oh so wonderful.

Life may not have turned out the way you expected, but you have a story to share that can help countless of people cope with the unplanned and unexpected. Talk about what’s going on. Help others see that the struggle is real. It’s time to let go of holding on so tightly to a life that once was. Let go and come dance with me.
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If you know someone who’s depressed, please resolve never to ask them why. Depression isn’t a straightforward response to a bad situation; depression just is, like the weather. Try to understand the blackness, lethargy, hopelessness, and loneliness they’re going through. Be there for them when they come through the other side. It’s hard to be a friend to someone who’s depressed, but it is one of the kindest, noblest, and best things you will ever do. ― Stephen Fry

I can honestly say I’m thankful for MS

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You cannot bargain with multiple sclerosis. No amount of self examination will alleviate the pain and destruction it is causing in your body. I tried at first and wound up feeling more defeated than victorious. I had to move past all the quick fixes people tried to push my way. I even tried some but there was no benefit or relief.

Is taking supplements helpful? Are good clean diets helpful? Is there a medication that will reverse everything taking place? Does anyone really have a remedy that works without fail? The answer to all of those questions is NO! They may make you feel better about yourself or even some of your symptoms may lessen and your body will fell healhier, but none actually heal you.

There is nothing to do about an MS life other than living it as happily, healthily and comfortably as you can. Make sensible choices in how to modify your home and even your life. Do your research and take the medications you believe will help you. After all that’s your choice, not your doctors. I have fired a couple of doctors over the years because they refused to actually listen to my needs. A doctor is there for you, not you for them. You are not their project, pin cushion or a patient to practice on.

Once you have moved past the diagnosis stage you eventually get to the point where you just don’t give a crap what other people think about you or your new normal. Are you physically disabled? Do you move slower than in times past? Do you have trouble with cognition making even day to day tasks troublesome? Do you have trouble breathing or even swallowing? Ugh… so many troublesome issues happening day to day.

Once I moved past the trauma taking place I looked back at life and what I have learned from everything I had experienced….

I can honestly say that I’m thankful for MS. Yes, that sounds crazy but it’s true. I’ve grown as a person. I’ve developed muscles I didn’t know I had. I can handle additional challenges in a way that I never could have done before. I’ve gotten closer to the person I really am and it has forced me examine my own values in a way few events ever have. All of that to me is a gift.

That’s my life with MS… all the nuts, bolts and springs of it.

MS altered my life but it doesn’t define it

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I think all of us long for the day when multiple sclerosis no longer exists. When we wake up in the morning to find that not only is there a cure which has eradicated MS from the planet, but one that has reversed the damage already affecting hundreds of thousands of people worldwide.

I woke up this morning and sad to say, today wasn’t that day. So what do I do? Do I get angry because of the struggle? Do I allow depression to overtake me? Do I resent the fact that life is so very different than I ever planned for it to be? Or, do I choose to recognize that life will have problems no matter what I’m facing or where I’m at and that it’s necessary to find some good in the day if I am going to get through it. Can that even be done?

It’s not easy living with a chronic progressive illness as you already know. Days can be so unpredictable and the limitations we experience can become overwhelming and heartbreaking. No amount of ignoring it, hiding it, or pretending it isn’t there is going to make it all go away.

I can tell you that as a fact because I took a shower this morning but struggled to gather up enough strength just to dry myself off. At least I remembered to rinse all the shampoo out of my hair before getting out. But since I have gotten dressed I’ve been dragging just to get myself going. Why do I do that to myself? I know that showers are one of my enemies that I need to be cautious of because it increases the weakness throughout my body for at least an hour afterwards. Telling me to ignore my weakness or even to pretend it doesn’t exist at a time like that is preposterous. I need a nap not a judgement from a heartless uncaring individual.

The most important thing I could ever tell you in life is that you are much more than your weaknesses and strengths. You are so much more than MS. Don’t let it define you.

  1. Try to express gratitude for the simple things: a warm shower, buttered toast and the smell of rain. Practicing gratitude helps focus awareness on what is going well.
  2. Recognize anxiety triggers. An upcoming MRI scan or doctor’s appointment, even walking into a medical office may bring up feelings of dread. Sometimes just recognizing anxiety can help dissipate some of the nervous energy.
  3. If you don’t quite have your pre-MS stamina, find a new way to experience what you love. Do you enjoy gardening? Try floral arranging. If golfing brings you pleasure, don’t throw in towel if you can’t complete 18 holes; set up a putting green in the living room.
  4. Stay engaged in life activities. Don’t delay living life to the fullest and planning for more. Make vacation plans or enroll in a community art class.
  5. Get physical. If there is a universal remedy for any type of illness it’s “keep moving.” The body is made for movement; without it, muscles shrink and weakness sets in. Ask your healthcare provider for a referral to physical therapy to jump start your physical improvement program.
  6. Connect with others who are thriving in spite of an MS diagnosis. What are their coping strategies? Healthy support groups can be a place of refuge where your feelings can be validated by other people sharing a similar life experience.
  7. Have tough conversations. Talking about the future can be hard. Sometimes just getting the conversation going is a tough problem to overcome. But if you’re talking with your close circle of family and friends, that’s a great start.

There are times when we need to put on a brave face even when we don’t feel very brave. To recognize our worth, beyond our accomplishments and bank account balances. To look MS in the face and say “I’m not afraid of you and will not be defeated along my journey into the unknown with a chronic progressive illness.”

It’s important to embrace yourself as you are without the need for constant comparisons. Remember, it’s okay to take your guard down once in a while. Everyone needs a moment to be themselves, away from the judgements of the world and from those that don’t want to navigate around our limitations. A place to be authentic.

Authenticity is about being true to who you are. It’s about embracing your strengths, accepting your weaknesses, and living in alignment with your values. As Oscar Wilde famously said, “Be yourself; everyone else is already taken.” This quote sums up the essence of authenticity. It reminds me that our authenticity truly defines us.

As we navigate through life, let’s strive not only to understand the struggles that we face but also to appreciate the unique individual that we are. I challenge you to shift your thoughts to focus on what you do have rather than what you don’t. I think you’ll be surprised at the strength that rises up in you.

Living with MS you have to make a choice: Fight or Give Up?

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In this crazy mixed-up world I can’t stop thinking about all that has to be done just to hold our heads up. Between health issues, worldwide troubles, unpredictable wars, economic downward spirals… where can you turn to remove yourself from all the chaos and really do you want to?

I think of my father in these times. He grew up a farmer but was drafted into the army at a young age causing him to have to leave behind the farm life. He didn’t have much of a career choice at that point. He worked hard and transformed into a great soldier.

He took what life gave him and became the best he could be with the hand he was dealt. I am convinced that if he had the opportunity to go to school he could have become a doctor, a scientist, an artist, or even a carpenter. He was all of those things to me. His life ended early, but his legacy remains.

He taught me what it means to be strong and courageous. I saw first hand the life of a soldier: the struggles, heartaches, pain and fears. Yet through it all, he never complained that life wasn’t fair (even though it was) or looked at something as an impossibility. He lived a full life to the end and gave it all he had.

Because of my father, I am who I am today. He instilled the determination, courage and resilience of a soldier in me, only I’m in a different battle and fighting a different fight. The tactics are still the same though. I have chosen to take what life has handed me and to become the best that I can be.

You are in a battle too. Yes, there will be struggles and pain. There will be times you may be fearful of tomorrow or even of the next step you need to take, but you are soldiers, and soldiers march on. You don’t lower your weapons or lay down in defeat. You push to the end and give it all you’ve got.

Each morning when you wake up and open your eyes, before you even pull back the covers, you have to make a choice. Fight or Give Up? Which will you choose? Are you going to let the fact that you have to crawl through the trenches just to get your day started cause you to wave the white flag of defeat? Are you going to let the opinions of others and their negativity keep you from advancing?

My answer is no, I will not. Join me.

We are fighters, not quitters. We are soldiers in this battle with MS. We are thousands strong standing shoulder to shoulder and linked arm in arm. Together we fight.

When one of us is wounded, we come together to hold that one up. No one is left behind. We are powerful! We are brave! We are unstoppable! We won’t back down and we will never give up.

“Impossible” is not a word in our vocabulary. We prove that to be true every day. Get rid of the complaining, walk away from negative people… they will only weigh you down and hold you back. Remember, you are not alone in this fight. Now, let’s get out there and kick some MS butt. Oorah!

You are a survivor

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Unlike many people, we’ve endured the diagnosis of multiple sclerosis. It’s a story some of you know very well. For me it was a quick process due to my MRI results and my prevalent loss of multiple bodily functions. But I know for others it was a long and arduous development with one appointment after another, yet nothing being found definitively sometimes for years.

Oh, the heartache. Oh, the worries. Oh, the concern of what is actually happening and when will it end. When the diagnosis takes place there is a moment of relief knowing that you aren’t going crazy. That there’s an answer to all your troubles.

Through it all, I have to say… you are a survivor. It took me a little bit of time to figure that out for myself. I was caught in such an out-of-control whirlwind that I couldn’t see anything around me that made sense anymore. But then I saw it. Hidden behind the appointments and around the newly discovered symptoms, there it was plain as day. I am a survivor. I’m not healed and as of today am not healed. But I have survived and each day I am surviving.

But why? That was the question I kept asking myself. Why have I survived? Why is this my life now?

I don’t know why I have lived through it. I don’t know how I have lived through it. But what I do know is that I have emerged stronger and with a clearer purpose. Whether you believe it’s God’s gift or just sheer luck… you have been given a second chance in life and I encourage you not to squander it or dwell on why you were chosen.

We make choices every day. Some are clear to make and some not so clear. But I believe we have been chosen to rebuild this MS community we find ourselves a part of as we rebuild ourselves. Some of us will rise to the challenge, other’s won’t. But we will all ultimately survive because we already have.

Let’s be honest. You’re a survivor.

I like how Lori Goodwin said it… “Even in times of trauma, we try to maintain a sense of normality until we no longer can. That, my friends, is called surviving. Not healing. We never become whole again … we are survivors. If you are here today… you are a survivor. But those of us who have made it thru hell and are still standing? We bare a different name: warriors.”

So fight on… my MS Warriors. Fight on!

Don’t ever apologize because you are hurting

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Have you ever expressed a concern or talked with someone about a new multiple sclerosis symptom you are experiencing without a “woe is me” attitude and their response was just get over it? I’ve always thought that to be a strange response. Get over what exactly? Get over the pain? Get over the fear? Get over a chronic illness? What exactly am I to be getting over?

How do you get over something that you live with on a daily and minute-by-minute basis? “Oh, today I’m going to ignore the fact that my legs don’t work, get over it and walk across the room.” Really? And that’s supposed to make multiple sclerosis go away…ignoring it and just getting over it? Yeah… No, that doesn’t work.

Don’t ever apologize because you are hurting or needing help. It’s like being sorry for being real. Don’t allow someone’s response to you cause feelings of guilt just because you are having a challenging day. You are the one living with MS and you have the right to feel what you feel. Most people with MS hide their struggles for that very reason. They don’t want to be thought of as a burden because they know their pain is ongoing and invisible to the onlooker.

Unfortunately, there are people who are unequipped, ill-equipped and wrongly equipped to be helpful to a person living with a chronic illness. If I had a broken arm, I would have people pouring out their concern and desire to help me open doors and carry a pile of books, but that’s because a broken arm is temporary and the need is visible. Once the bone mends and the cast is removed, the need for help is no longer there. Life goes on as it always was and no one has to open doors or carry books for you any more.

But unlike a broken arm, a chronic illness is ongoing. It doesn’t simply go away as time passes. That’s why it doesn’t make sense to expect someone who is going through pain, weakness or any other MS struggle to simply “get over it” as if it’s a decision that can be made.

Most of the time people who give that kind of advice, if you want to call it advice, are at a point of frustration within themselves because they are being inconvenienced. They actually say what they say because in reality they want you to be over it so they can be spared having to deal with your challenges. Most people want to help others out, but they want you to feel better thus sparing them the inconvenience of having to adjust their own lives to accommodate the unexpected. They are thinking of themselves.

I promise you that no matter how hard life is right now, you are not “too much” or someone that is weighing other people down. As I’ve said many times before, remember that you are not a burden, you HAVE a burden which by definition is something too heavy to carry alone. Don’t be afraid to ask for help. The ones who are meant to stick around will ask how they can help lift that burden whenever they can. Let the others go.

Above all, remember that you are loved. I know it doesn’t feel like that right now, but it’s true. An MS life can be remarkably hard. We’re not invincible. What one person can handle can be too much for someone else. It’s not about how strong or weak you are, you’re just a person trying to make your way through the craziness of an MS life like many others. Give yourself some credit for pushing on despite how intense things are right now. You got this!

What being brave feels like

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I know how hard it is to push through the murkiness and brain fog that surrounds you all because of multiple sclerosis. You don’t deserve the troubles it brings to your life. You didn’t cause it and you can’t seem to escape from its hold on you.

It’s almost like you are stuck in a pool of quicksand that feels more like concrete than murky water. At least with murky water you can move and keep you head above the water line. With concrete you just sink to the bottom like a rock.  I have had my fair share of bottom sinking moments. I have the bruises and broken bones to show for it.

At those moments all I know to do is cry. I don’t feel very brave when that happens. Do you know what makes me feel brave?

I feel brave when I stand up and don’t let people tell me who I am or am not.
I feel brave when I face the monster that has tried to destroy me even while shaking in my boots.
I feel brave when I hold someones hand so we can face this journey together.
I feel brave when I put on my socks without falling over.
I feel brave when I ask someone for help.
I feel brave when I tell someone to their face that I will not be treated in a certain way.
I feel brave when I stand my ground about the medications I will or won’t take.
I feel brave when I tell someone how much they mean to me.
I feel brave when I make it through a day with less battle scars than the day before.
I feel brave when I manage to get out of bed while my body is screaming at me to just go back to bed.
I feel brave when I use the toaster without jumping out of my skin when the toast pops up.
I feel brave when I know that MS can’t sink me.
I feel brave when I actually enjoy my alone time without feeling guilty.
I feel brave when I help someone else to be brave in the face of what they fear.

Keep fighting the good fight. Peace, love and lots of chocolate to you…

Do you suffer from comparison-itis

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Comparison is one of the greatest diseases in this world and we are taught to do it from birth. From birth our parents start comparing us with other children. Simultaneously, our teachers and coaches compare us with other children.

This is the greatest disease because everybody is born unique, and comparison is simply not possible. Just as we are all unique and cannot be compared, it is the same with illnesses. There is NO illness worse than another. ALL illness is terrible.

When a person compares someone who has multiple sclerosis with someone that has another illness… they are speaking from a lack of understanding and through filtered lenses. No one can know what someone is experiencing unless they crawled into that person’s body to feel what they feel, and experience what they experience.

One of the worst experiences is when you share your multiple sclerosis journey with someone and they proceed to tell you how their approach to MS or some other ailment is the only way you should be living? That you need to adjust your diet and get rid of meat, diet soda, and gluten. That because you go to a doctor and take meds, you are doing it all wrong? That you wouldn’t have the struggle you are having if you would just do things their way? That if you only ________ (fill in the blank) you would feel better?

It can get extremely frustrating when someone assumes they know your body and your journey better than you do. Comparing illnesses or even progressions of the same illness between two different people never works. When someone does the comparing like that, they have fallen victim to the greatest disease in the world… comparison-itis! But take heart, there is a cure… an adjustment of the attitude works 100% of the time.

Stop comparing, stop complaining… and start loving, caring, and nurturing one another.

No matter what happens, it will be okay

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I had a rough night last night. I’m not sure what happened but I spent my night hugging a bucket as nausea took over and I spent my time vomiting. I had a fever too and even had to turn my air conditioner on full blast for a time just to get comfortable. My stomach muscles worked overtime to empty out my system. So, now I’m empty but have yet to drink anything because last night it didn’t end well when I tried. I want a little bit of rest first before I try again.

That has never happened to me before to that extreme but I’m glad everything has calmed down a bit. I wonder if it was due to a new medication I took yesterday. It must have disagreed with me and sent my system into a downward spiral. I normally can’t take many new meds even aspirin or something disrupts my cellular response. At least I know what to avoid in the future.

That kind of thing happens a lot with me. Multiple sclerosis has put a kink in everything I do. I had forgotten how hopeless life can become when new problems happen out of the blue. At one time the difficulties had me hating everything… including life. But then my new MS friends changed everything. They understood the unusual reactions of my body. Maybe not really understood them, but they knew that they would happen and how to go with the flow.

Over time I have come to realize the life that I have. The spirit that I truly have. I may have troubles, but they won’t take me down for too long. Life is a gift. It’s special and beautiful. And life is what we make of it. No matter what happens even when it seems like the world is crumbling around you, if you have a support system with even just one friend you know that everything will be okay.

Life will go on, the sun will rise on a new day, and the rainbow will come out after the storm. No matter what happens, it will be okay. That’s my view of life right now. It may be crap at times, but everything will be okay. Troubles will come, troubles will go, pain will come, pain will go, life will expand and life will grow, I just need to make sure I’m nurturing it and filling it with hope.

Even if you can’t do something as you once could, you have to keep trying. Be calm, be brave, don’t quit on life and never quit on yourself. The world needs you. I need you. You are the reason I’m up today and sharing my thoughts and experiences. Thank you for just being you and accepting me for who I am. I’m doing the same for you. Gentle hugs coming your way… xoxo

A monster called multiple sclerosis

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Growing up I remember being afraid of monsters. They lived under my bed and were going to eat me. I had to make sure not to hang my feet or hands over the side of my bed while I slept. Somehow my magic blanket protected me. It seems monsters are afraid of blankets.

As a grown up, my monsters changed. They still try to scare me but in different ways. I have to be sure to keep my heart and mind protected from their scare tactics. That’s where they try to gain control over me.

Fear is a powerful thing. It can paralyze you and steal your peace.  I found the biggest thing when it comes to monsters is to be careful in how you look at them. The monster called multiple sclerosis had crept into my life and tried every tactic it could to scare me and keep me from living.

What if I end up in a wheelchair? What if I die early? What about all the pain and uncomfortable moments that will happen? So many unanswered question that have a potential of scaring anyone living with a chronic illness. But the what if’s aren’t guaranteed and most of the time they don’t happen as bad as thought or even at all.

At first fear was good at keeping me from doing things that could hurt me but then I realized I was able to do more than I thought. The only voice I should be listening to is the one in my own heart. No more shadowy whispers or monster growls to keep me from doing things or from being myself.

Haven’t we all allowed fear, at one time or another, to become bigger than the reality of life itself? As a child, I allowed fear to take from me, but what was I truly afraid of? A monster, a shadow? Really?

There’s always going to be monsters in this world. It doesn’t matter where you are or what you’re facing but I promised myself I would never let monsters scare the life out of me again. And that’s how I live my life. Just remember that it’s ok to be sad and it’s okay to be afraid.

I still catch myself thinking, “There is always tomorrow. And what will tomorrow bring? Will it have monsters and creatures and scary shadows?” I can’t tell you what tomorrow will bring… but tomorrow doesn’t have to be scary when hope is lighting the way.