How do you live with MS? You just do it!

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You have been through so much lately. You’ve crossed hurdle after hurdle going from one doctor’s appointment to the next. You’ve made your way through danger more than once in the past year alone. You’ve climbed mountains that no one even thought were scalable and yet you overcame the odds. Every day seems to present itself with challenges, but somehow you find a way to get through them.

Admittedly, you don’t always win. You don’t always cross the finish line at the end of the day, but the most important thing is that you never quit. Sometimes you find yourself questioning everything happening in your life. Sometimes the dreaded questions “why me?” and “why now?” run through your thoughts but they never seem to come with definable answers, only more questions.

What do you do when faced with a life of multiple sclerosis? Where do you go from here once diagnosed? How are you supposed to function in an able-bodied world that doesn’t seem to understand the complexities of living with MS?

The answer…you just do it!

You drag yourself out of bed each morning exhausted, weary, overwhelmed, and at times feeling completely defeated, but you make your way through the struggle in your day anyway. Some days are better than others. Some days you can walk, other days you can’t. Some days you find yourself laughing, other days even a giggle seems impossible. But you do it anyway.

Today may be one of those impossible, unimaginably difficult days. I won’t lie to you, regardless of what complications MS has given you, a life with MS is hard. There are surprises around every corner; some good, some bad.

Sadly, a majority of the awareness campaigns for MS don’t actually tell the world how ugly MS can be. They show the smiles and the brave souls walking their way through a 5k trek with their arms raised in victory, but what about those who can’t walk? Or the ones that have trouble speaking, breathing, eating, seeing or functioning in a so called “normal” world? Why are those people never seen or shown as the face of MS?

Yes, there have been great strides made in helping people manage their MS symptoms and new treatments are being discovered that help slow its progression down. For that I’m enormously thankful. But when is the public going to see that MS isn’t just an “Oh, well it could be worse” kind of disease? When are they going to be shown the reality of what it actually does to a person’s life and body?

My hope is that some day soon people will see the reason we fight so hard every day, but also the pain we endure. That they will understand just how much we overcome on a daily basis. That we may put on a brave face, but deep inside we carry around an uncertainty of how long we will be able to wear our brave.

Every person fighting MS is brave, every one is amazingly strong, and every one is on a journey of uncertainty. We hope for a better tomorrow but we also hope for a world that will truly see MS for what it really is…a chronic progressive disabling neurological disease that has no known cure.

It’s time we let the public see the ugly side of MS and why we so desperately need a cure.

When did society stop caring for the sick?

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My biggest pet peeve is people who say one thing and then either do the exact opposite or nothing at all and prove themself to be untrustworthy. I’m finding it harder and harder to believe people will do what they say they will do…unless they are getting a paycheck in return (and even then they are not always trustworthy).

It’s sad really. As my health declines, my circle of friends have decreased with it. It seems that happens to everyone I talk to when it comes to living with a chronic illness. It’s easy to commit to helping someone for a month or two, but anything longer than that you become a burden to them and they find other things to take up their time.

When did society stop caring for the sick? It’s easy for someone to post a status online saying how much they care about others or share a cute picture of cats as well as ones of a beautiful flower garden to say they care, but to actually get their hands dirty and physically do something is waining. You just don’t see that happening much anymore.

People seem to want the recognition by the masses. They want the press coverage and plaques of achievement hanging on their wall to show off their accomplishments and prove that they care for others. I’m just sitting here at home needing my trash taken out and can offer a hug in return. Not much. But a hug will last much longer than any 15 minutes of fame. After all, a hug is eternal.

I am pretty good at faking being okay for a few hours if someone were to stop by to visit or I needed to go to the store. Make-up and hairspray does wonders. But come live with me for just a day and you will see how tough life with MS actually is.

Don’t just assume because I’m silent, that I’m okay. Most of the time I get tired of always asking people for help and getting excuses in return. That’s why I simply quit asking. Sure, you can fault me for that. I should be more persistent in voicing my needs. But the flip side to that is when I am persistent, I get a defensive response that basically becomes an “I’m sorry I can’t help you today, I’m busy” reply.

My advice: Hang onto those that have proven their word time and time again. Shower them with thanks and gratitude as often as you can so they know that their work and help is needed, valued and appreciated. Get creative and come up with a back-up plan for all the other people that disappoint you.

You might think you aren’t hurting enough. That there are people worse off than you and have been through more struggles. You may even think your story isn’t significant enough when you compare it to others and then the thought comes to your mind that people will think you are just seeking attention.

There is no measurement for pain, hurt and loneliness. No matter where you are in your story or what it looks like, it means something. Your pain is important because it’s yours. Your story can help other people continue their stories as well. Yes, all pain is different but there are things that we all share when the darkness comes and we feel hopeless.

At times you may even find yourself in a place where your thoughts fight back at you more viciously than they ever did before. Where you think and feel too much and just want to be numb to it all and left alone. 

I want you to know that you are valued.
You are important.
You exist.
You breathe.
You love.
You fight.
You hurt.
You feel.
And because of everything, because you are here in this world, you matter.

Never let other people’s actions keep you from knowing how amazingly incredible you really are. You truly are an beautiful person and not a burden. You may be living with an incurable, unrelenting, horrible disease, but you are AWESOME!

Laughter puts a bit of sanity in the insane

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When terrible things happen, one of the first things to disappear in the chaos is laughter. Somehow all the smiles and giggles that once filled the day get tossed to the wind and pushed aside giving other things more importance. Things like fear, anger, sadness and worries.

For many people, laughter just doesn’t fit in with all that’s happening in their crazy, mixed up world. I mean, how can anyone laugh when their life is falling apart. It just seems impossible…absurd…oh, so wrong.

After being diagnosed with MS, in my head I had created a nightmare even worse than the one I was living. No one knows how long a difficult time with MS will last and laughter is one of those things that simply makes the steps lighter and easier to make. Once laughter is gone, everything else falls apart so much faster and harder.

I, myself, have been known to laugh through the tears. That’s kind of like those times when it’s raining outside while the sun is still shining. Seems impossible, but it happens.

Laughter is important. It’s needed. It’s what puts that little bit of sanity into the insane. It brings out the rainbows and butterflies, and chases away the clouds.

I can laugh about my weak legs, muscle spasms, inability to remember things, lack of coordination, and bathroom mishaps. Granted, some of those things can be embarrassing and bring me to tears, but I choose to laugh anyway. Laughter has this wonderful ability of helping to lessen the pain.

Laughing doesn’t mean I’m ignoring reality. It doesn’t mean I’m being careless, ignorant or naive. It just means that I am putting down all those weighty, life altering thoughts and moments for awhile in order to rest and build up the strength needed for the upcoming journey.

Never apologize for laughing and don’t ever feel guilty for enjoying life in the midst of the struggle. The person that can enjoy the journey regardless of the potholes, ditches, mud puddles, and pain is a rare breed. Be that rare breed.

Don’t let the things you are facing today take away your ability to laugh. Nothing is impossible with MS, the word itself says it all ‘I’m possible’! Wear a smile through the tears, go against the flow and allow yourself time to laugh, really laugh…and keep on laughing. It does the body good.

Oh, it can’t be that bad

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These past few months for me have been terribly difficult. I think I have experienced every emotion imaginable. I have cried more than usual, lost my temper for seemingly stupid and even unknown reasons, and become more withdrawn than I ever thought possible simply because my body and brain won’t cooperate.

I can literally feel the changes happening in my life, so much so that if I allow my thoughts to linger on my increasing weakness and struggles, it scares the crap out of me. (That’s just me being honest.)

It’s hard to talk with people about those fears and the crazy emotions I deal with mainly because, 9 times out of 10, I am met with “Oh, it can’t be that bad” or “You just need to think more positively.” I find it to be exhausting trying to explain progressive MS to people who aren’t willing to actually listen.

Here are a few things I wish more people would try harder to understand about life with multiple sclerosis:

1. There is no cure

No matter what you read online or hear people say, there’s nothing that has been proven to eradicate the disease from a person’s body aside from a miracle. There are symptom management techniques through supplements and diet and medications that work to slow the progression down, but that’s not a cure.

2. My symptoms are unpredictable

One minute I may be doing well managing the pain, weakness, sluggish thought processes, and vision difficulties. The next minute I may need to climb into bed and be unable to move for hours. I am not being lazy. I’m taking the rest my body needs in order to function. You have to remember, it’s fighting every second of every day just to survive.

3. Things will get worse

I know you think that’s not being positive enough, but no amount of not talking about the truth will help others (or even myself) come to terms with my reality. MS is progressive. That means that as time passes, symptoms will build and my life will become more difficult. I need to prepare for the possibilities of tough times so I’m not caught off guard when they happen. Help me to not allow my difficulties to be the only thing I focus on, but allow me the space needed to face the truth.

4. I need help

Just because I don’t ask for help every time I do something doesn’t mean I don’t need it. From my perspective, I see the burden I have become on others and know that in the future it will be an even greater need. I also know that I can’t give back like I could in times past. Those thoughts weight heavy on me at times. Regardless, never stop asking if you can help. Just the asking makes each day better because it shows me you care.

5. Please invite me

I know I am limited in the places I can go because I have to ensure accessibility and that it’s not too late or I’m not too tired, but please don’t decide for me if I can join you for a time out of the house. You may hear no more times than yes, but I feel included when you ask.

6. Little things matter

I know it may sound silly, but a text asking how I’m doing or just to say “thinking of you” makes any day brighter. So does picking up the mail, dropping off a meal, doing a load of laundry, taking out the trash or just sitting for a chat. Those things matter more than you will ever know.

7. Don’t get offended

I have a brain that can’t keep information in order. If I don’t remember a special date, have trouble putting words together into coherent sentences or I’m not engaged in a conversation, don’t hold it against me. Most of the time it’s difficult to keep things organized in my head. Even with lots of notes and reminders I confuse things.

Find your happy

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I was awakened this morning by a bird singing outside my window. Did I say singing? I meant loudly squawking at 4:00 AM without any pauses for air. What in the world is a bird doing up so early in the morning? Are worms even up yet? I think the worms are still asleep, which means this early bird isn’t going to get a worm for a few more hours. It would be nice if he would just go back to bed and let me sleep a little while longer.

What is he so cheerful about anyway? It’s not like he won the lottery or something and needed to let the world know about it. Whatever the reason, he woke up with a song in his heart and he is making sure everyone knows about it.

I had a friend like that. When she woke up in the mornings, she didn’t pause to collect her thoughts or to plan out her day, she was just immediately awake and cheery. It was super annoying too. I don’t wake up well to someone singing,

“Wake up, wake up you sleepy head
Get up, get out of your bed
Cheer up, cheer up the sun is red
Live, love, laugh and be happy”

I would think, “Yeah, you’re going to live, love, laugh and be happy when I whack you upside the head with this toaster.” But you know, I never did hit her with the toaster. I always made it through the morning, and so did the toaster.

I did notice that the song she would be singing, I would eventually be singing too. It wouldn’t happen right away, but eventually I would be eating my cereal and catch myself tapping my foot and humming along. Then, as I would be getting ready for my day, a song would come out. Before you knew it, I would be belting out a song from a movie or singing along with the radio. It’s kind of like when you hear a song in a commercial and you find yourself singing that tune everywhere you go because it somehow got stuck in your head.

Cheerful people can be super annoying in the wee hours of the morning, but you know, no matter how annoying they are, we could learn a lot from someone who wakes up with an instant song in their heart. The world could be crashing in all around us, storms could be blowing, tsunamis could be washing everything away, flood waters could be rising, yet there’s still a song to sing. No one or nothing can take your song away, not even multiple sclerosis. That’s something you own. You and you alone.

So this morning, find your song and sing it. If you need to collect your thoughts first like I do, that’s okay. Take the time you need to wake up fully, but once you are up and at em’, sing…sing your song with all your heart. Cut loose and let out the song that’s hiding deep inside you. And if you can’t find your song today, that’s okay too. Get around someone with a song to share. Before you know it, you will be singing it too. You might even find yourself dancing a step or two. Find your happy!

Multiple sclerosis is not a death sentence

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I think we all go through a stage at the beginning of being diagnosed with multiple sclerosis where we think life as we know it has ended. I used to tell people that MS is just two letters in the alphabet, it’s not a sentence! Sounds good to say but when you get a closer look at it by living with it, that kind of thinking changes.

As time went on I thought of it as more of a death sentence than simply 2 letters because it seemed to be the death of everything I knew. My mobility, my ability to feel and function in a regular capacity, the decline in my cognitive function, just so many changes to my bodily usage had decreased and caused me tremendous difficulties. So much so that I felt less human than anything else.

And with my bodies ability becoming so much worse it was more of a death sentence to me than anything else… yet when looking at all that I have endured I don’t see it as a death sentence at all. It more of a faster path to death but not a sentence. Life still happens and there are still moments of happiness and joy in the process.

You can be happy, even in a “broken” body. It may not seem like it now, but the truth is that you can build a happy, meaningful life for yourself, even if you’re never able to walk, hear, or even see like you used to.

It goes without saying that your disability has already changed your life in big ways. But with commitment, creativity, and a willingness to do things differently, you can reduce the impact your disability has on your life.

While you can’t go back in time to a healthier you or wish away your limitations, you can change the way you think about and cope with your disability. You are still in control of your life and there are many ways to improve your independence, sense of empowerment, and outlook. No matter your disability, it’s entirely possible to overcome the challenges you face and enjoy a full—and fulfilling—life.

Don’t let MS control you, you be the one in control. You’ve got this!

Never regret… today’s a chance at living

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I woke up this morning, made my way to the closet to get dressed and the first thought that popped into my head was “Ugh, another day with multiple sclerosis.” As soon as that thought showed up I knew it wasn’t a wonderful cheery thing to be thinking. But hey, I’m human and thoughts like that happen.

The day hadn’t even officially begun and I was already thinking about how my powerchair has become my best friend rather than a pair of running shoes even though my new powerchair has yet to arrive. I also thought about the pile of dirty clothes that needs to be washed and yet how I have zero energy to load the washing machine to even get the first load started. About how much pain my body is in every second of every day. About how extra hard everything in life seems to be now from putting on my socks, to brushing my teeth, to filling up the gas tank in my van, to buying toilet paper.

We all have moments when thoughts like that appear. Thoughts that we really don’t want to be thinking but show up anyway. I know I’m not the only one waking up wishing that MS didn’t exist and having a woe-is-me morning.

As I pondered my dreary, self-focused morning thoughts I realized fairly quickly that I needed to adjust my thinking. Today, this very day that I woke up to dreading, is someone else’s chance at living. How can I throw that away? How can I waste 24 hours – time that I can never get back – choosing to fill it with sadness and regrets.

This day called today… the day that I woke up to feeling exhausted and disappointed in because of MS. Yes, this very day is a blessing to someone else. All of those things I woke up dreading are seen as a blessing in someone else’s world.

There are people today thankful for the chance to fix things they messed up yesterday, thankful to spend one more day with their family and friends, thankful for the pain they have to endure because it simply means they are alive, thankful for an opportunity to see a doctor even if that means they have to travel hundreds of miles to get there, thankful to have a wheelchair even if it’s second-hand, worn out and falling apart.

I can choose to be one of those grateful, thankful people or decide to waste away my day on regrets and sorrows. And so can you.

How about I start things over?

Good morning, sunshine…today is a new day. It’s a chance to do something great. It’s an opportunity to truly live and make a difference. There is only one today and each second of it is precious.

Don’t waste the day pondering regrets and sorrows from your woulda, coulda, shoulda thoughts. Invest your time into the lives of those around you and into yourself as well. It’s worth it. You’re worth it.

It’s okay to not be okay

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When multiple sclerosis becomes part of a person’s life, it comes with one purpose…to steal and destroy. It ransacks the nerves in the Central Nervous System with a ravenous appetite for myelin (the coating around each nerve).

If you didn’t know already, nerves happen to be extremely important to the body. They are what gives us the ability to see, hear, talk, walk, feel, breathe and even blink…basically they control everything a body does.

It seems that no matter how much MS chews and gnaws at the nerves, it is never satisfied. Once it gets a taste of fresh myelin it can’t stop. It just wants more, and more, and more like cookie monster. Om nom nom.

It acts as if it’s at an all-you-can-eat mini bar gobbling up everything in sight while leaving behind a table piled high of dirty plates, silverware and cups. I even tried to trick it by covering everything with hot sauce made with ghost peppers, but it just mockingly licked its lips and kept on munching.

It’s sneaky too, working in the shadows with no remorse or regrets. I’m almost sure I saw it on the top chronic illness most wanted list.

But even though it causes such terrible destruction and chaos wherever it is found, there is one thing it can’t steal from you. It can’t take away the person that you are. Never forget that. You are so much more than MS ever could be. So much more!

I know you have days when MS defines your day and determines your capabilities, but don’t ever let it define who you are. You get to do the defining in that area. And from what I can tell across the miles, wires, online posts and cell phones, you are strong, courageous, brave, and amazing…even when you think quite the opposite to be true.

Hold your head up today, take a deep breath and step out into the world knowing that you are better than MS or any other kind of illness or problem you happen to be facing. Don’t ever underestimate the value of who you are and never, ever, EVER let MS steal your identity. Don’t forget that it’s okay to not be okay.

I face the impossible every day with MS

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I understand how it feels to be drowning in medical bills, strained relationships, physical and mental exhaustion, stressful obligations and a demanding job. Add to that the fact that you’re living every second of your day with multiple sclerosis and you might as well just close the door telling everyone your body’s out of service and you need a break.

You face the impossible every moment of every day and yet somehow as the sun goes down, you always make it. You find yourself climbing into bed feeling beat up, worn out, battered and bruised, but as you lay your head on your pillow and take a moment to look back over the day, you realize that the ninja living inside of you kicked some MS butt.

You pushed through rush hour traffic with your legs and hands cramping up while your head was spinning everything in sight. It felt more like you rode in on a roller coaster than a highway. Then you managed to make it to the bathroom…well, almost. But thankfully you had a change of clothes in your car and no one even noticed that earlier you were wearing a pair of black slacks instead of the blue ones you now have on.

As the day went on you kept making mistake after mistake. You’ve become pretty good at covering those kinds of things up. It takes great skill to stumble over words then turn them into something that makes sense. You’ve mastered the art of word replacement, finger pointing, hand gestures, and usage of the words thingamajig and doohickey.

You even managed to keep from burning down the house after forgetting about the casserole you put in the oven for dinner. Sure, it was a little charred, but you are now an expert as scraping off the burnt parts and still producing something that’s edible.

Today may be an awful day, but it’s not the day you give up even though you have every reason to do so. Instead, it’s the day you push through and remind yourself that if you can make it through the terrible, horrible day you had a few days ago…then you can surely get through today. Let your inner ninja loose.

Hiyah! (jumps in the air and kicks MS in the teeth)

Living with a urostomy and MS

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I’ve been having trouble functioning due to the kidney stones I am dealing with. The one I passed last month was over 19mm in size. That’s a monster. As you know I had my bladder surgically removed due to the bladder issues I was having with my suprapubic catheter (SPC). With multiple sclerosis most people do well using a SPC but I now have a stoma that helps me to empty my urine. It’s called a urostomy.

It gives me control of my makeshift bladder which is a urine pouch that I attach to my stoma at my stomach area. I empty it myself when it gets full just as you empty your bladder throughout the day when you go to the bathroom. And at night I can attach a larger night bag so I don’t disrupt my sleep needing to empty it.

Thankfully the pouch fits inside my jeans or whatever clothing I may be wearing so people don’t even know it’s there. My kidney’s are still functioning just routing my urine to an external pouch that I change about every 3-4 days.

I didn’t know my kidney’s could pass stones via my stoma like the monster I did pass. But at the moment my recent CT scam shows that I have a stone that is blocking urine from passing in my right kidney. Because of it my kidney is inflamed which isn’t good. I see my urologist on the 10th. I was hoping he could see me sooner.

But in the meantime I’m taking pain pills to help curb the pain. I’m exhausted just writing this. I also have a temperature that I recently got under control. It’s now 102° but manageable with antibiotics and Tylenol.

I’m thankful that I had my bladder removed, it has been a great help to me in dealing with wetting myself as I did before. The only problem I have now is when my pouch has a leak from where it attaches to me, which doesn’t happen often.

I don’t have to time my bladder to my life like I did daily before. I have an empty water bottle in my van if I need to unexpectedly empty my bladder which really helps. Just if you ride with me and see that it’s full, know that it’s not a Mountain Dew. (grin)

I also have a birthday coming up and hope anyone that can help me to cover the cost of my new powerchair will help. If everyone gave $20 that would help out tremendously. Thank you so much for your help.

____________________

Fundraiser for Penelope’s New Powerchair

Give at GoFundMe
Give at Positive Living w/MS