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We are living with a forever disease

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We live in a messed up world in a messed up body with a messed up disease, so when things get messed up around us…why are we so surprised? Don’t let the messes mess up your day. One thing to keep in mind is that we are living with multiple sclerosis, a forever disease, as crazy as that may seem.

There is nothing as of yet to rid the body of MS. Yes, you can manage the symptoms and sometimes even make them appear as though they don’t even exist. But don’t kid yourself. You still have MS even when it’s hidden. Be mindful of your body and what it’s telling you. Only you can hear it. Sometimes it will be annoyingly screaming at you to pay attention. Please stop and listen.

Growing up in a family of seven, we had our fair share of messes. I loved baking and would enter contests from time to time. As a ten year old I could make a killer lemon cake. It won me a blue ribbon more than once.

I was taught to clean up as you go. I had fun as I gathered all my ingredients; measured out what I needed; sifted, mixed, cracked, whipped, poured, and baked. The entire time I was also cleaning up, putting away, rinsing and washing to keep from having too big of a mess. By time the cake was in the oven, I was ready to watch it rise.

Now my oldest brother, that was a different story. You let him loose in the kitchen and it would turn out looking like a tornado hit it. He had no concept of order, he just had fun. He could make some amazing oatmeal cookies, scrambled eggs and even sirloin steaks, you just didn’t want to go in the kitchen afterwards. It was messier than messy. It was what I called confused chaos. It would take him time, but the kitchen would eventual get cleaned up and looking just as amazing as his food tasted.

We both had messes to face, we just chose our own way of dealing with them. I would tackle things bit by bit as they came along and he would wait to attack them all at once. We both had fun, we both had messes, but in the end we both had something amazing.

It bothers me when people come along trying to dictate how to live with MS as if the mess we find ourselves living in has a one stop, one way fix. What makes people think they’re the experts at living with a chronic illness just because it works for some, never for all? If I choose to follow a certain diet, something different than you…am I wrong, or are you wrong? If I choose to not take meds and you choose to take something…am I wrong, or are you? If I chose to visit a doctor and you chose to stay home, who’s right and who’s wrong?

Each person is different with different bodily makeup, different cell structures, different DNA, different problems, really different everything. What works for one won’t necessarily work for another. To be honest, one drug may harm a person as well as help another.

You see, we each have our own lives, our own messes, our own chaos and our own fun. No one is right or wrong in how they go about living with MS. There are always things we could do better and new things to learn, but NEVER should we act as if we are the guru of all knowledge and wisdom regarding something as unknowable as MS and the human body, because we aren’t. It’s just that each of us deals with the mess in different ways.

Don’t let anyone make you feel bad because they chose something different than you. You be you and do what you know you need to do for yourself. You know your body better because you are the one actually living in it. Be unique, be crazy, make a mess, try new things, make mistakes, and even succeed…but most of all, hang onto the smiles around you and enjoy living.

There’s only one you and only one today, but there is a potential for lots of smiles to help you through this messed up life we have. Choose to find the smiles.

I was born a fighter

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I will never give up,
throw in the towel,
back down, quit or
wave the white flag of defeat.

I may not wear a cape,
have my initials emblazoned across my chest
or leap tall buildings in a single bound
but I do wear pajamas even on my good days
and fall faster than the speed of light.
Don’t judge, that’s just the tools I have to work with.

I’m a doctor without a diploma,
a professional freestyle tumbler and
a faux Oscar winning actor. Sh, don’t tell!

I forget appointments,
burn dinner,
avoid saunas,
laugh and cry unexpectedly,
create messes,
trip on air,
choke every time I swallow and
stumble over nothing at all.

I’m a hard working,
word searching,
body fighting,
bruise finding,
re-run watching,
wall holding,
floor catching,
numb walking,
stair falling,
ice vest wearing,
body slamming,
pillow hugging,
nap taking,
slow moving,
mountain climbing,
multiple sclerosis warrior.

Yes, that’s me.

Are you feeling better?

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The hardest and most difficult question for me to answer isn’t “Would it serve you well to trust people more than you do, or to be more careful of whom you trust?” Although that seems to be a simple question to answer, it’s still nowhere near as difficult of a question to respond to as being asked “Are you feeling better?”

I don’t know if people realize how difficult being asked such a question is for someone living with a chronic progressive illness. Am I feeling better than what? How I was feeling yesterday? Last year? Five minutes ago?

It’s not like I have the flu or a broken arm which mends over a short period of time. Multiple sclerosis is a chronic disease. That means it doesn’t go away just because I went to bed early, had a ten minute break at work, took two aspirin in the morning, or deny its existence.

MS is something I will have for the rest of my life. It causes physical limitations, weakness, debilitating fatigue, numbness, paralysis, constant emotional strain, cognitive problems and a whole host of other difficulties.

I am sick with a disease that, to this day, has no known cure and will only get worse as time passes. You see, my immune system is literally on a revenge attack against my own body causing chaos in my Central Nervous System. It is attacking the nerves throughout my brain and spine and eating them like they are hot wings at a tailgate party. It affects every part of who I am.

As of today, this disease is forever a part of my life no matter what you read from Dr. Google, hear from a friend or learn from a brochure at a doctor’s office. My hope is that one day things will change for the better and MS will become a thing of the past and each day scientist grow closer to finding ways to ease the pain we all face, but today isn’t that day.

I have moments when both the physical and emotional pain in my life are overwhelming. But I also have times when I can manage everything quite well as I hide my struggle behind a smile. I have been known to cry, scream and even question my own existence especially when I find myself being judged, stared at in public, and losing friendships all because of how MS is affecting me, my emotional makeup and my everyday functionality.

But regardless of everything I am going through…no matter what happens or how down I may feel…I keep fighting. Today I woke up in a war that seems to have no end. Imagine a life lived under continual sniper fire, surrounded by hidden landmines ready to explode with each step you take and hand grenades being thrown at you for no apparent reason.

Sometimes I am weak and can’t even find the strength or ability to think past simply knowing my name. Times when MS wins as it punches me in the stomach and takes my breath away. But even on my worst days when I feel so utterly useless and weak, I refuse to quit.

I may never “feel better” like so many people want me to, but this battle isn’t over no matter what the day brings and neither is my life. I am simply living it differently than most people. It’s a new day and I have a new chance to make a difference in this world. Each one of us do. Use today to show the world what real strength is and what true warriors look like. You are my hero. You are an MS Warrior!

A life with multiple sclerosis isn’t easy

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I have never climbed Mount Everest but it seems like every day I scale its twin. Somehow this twin of a mountain is in front of me as soon as I open my eyes to start the day. As the morning begins I am faced with a new climb in my journey with multiple sclerosis, sometimes even before I pull back the covers.

One day I may be staring at a gigantic wall of rock that seems impossible to scale and the next day my path may be a gently sloping hill of grass. I never know what part of the climb I will be facing until it is there in front of me. If I had my choice, I would pick the gently sloping hills every time. They make it much easier when I fall down. Those rocks hurt.

But no matter what I am facing, the thing I keep reminding myself with each forward motion I take is to never give up…even if I am on unsteady, shifting rocks. A life with MS isn’t easy no matter what you are dealing with, but at the end of the day I lay my head down on my pillow knowing that I did the best I could. That’s what really matters anyway, doing your best.

Today I have to have blood tests done to make sure my white blood cell counts are good, then I have a load of laundry to finish and my kitchen needs to be cleaned up. All things I would much rather avoid, but they’re not going to get done without my help. I also have yard work to do which I want to wait for the early morning hours when the temperature is cool and my body is more manageable. That may have to wait for tomorrow. I just need to make sure I pause enough so I don’t get to weak and useless.

If you are facing an overwhelming pile of work that needs to get done before the end of the day or are weary from the difficulties life has handed you, take a moment to pause in your climb. When your emotions are going bonkers, the pain becomes too much, your blurred vision is limiting your view…pause. When nothing seems to be going right and your hope of a better tomorrow seems to be fading fast…pause.

It doesn’t have to be a long pause, just enough time to catch your breath. No matter what you may think, pausing doesn’t mean you are giving up. It actually helps to give you the strength needed to keep going. Pause, but don’t quit.

You really do have the strength within you to keep climbing, to keep going. I hope you pause long enough to find the added strength you need today. You’ve got this.

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!

Sometimes a little change is all you need

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I decided to color my hair after years of allowing it to go grey. The main reason was because living with grey hair started making me feel old. I needed a pick me up moment and oddly enough coloring my hair did the job.

I’m back to being a redhead. The change very likely activated the ‘happy’ chemicals in my brain, like serotonin and dopamine, and accounts for the lift in my spirits. It’s like how a change in scenery is recommended for depressed people. My hairdo change has helped to lift my spirits. Now when I look in the mirror I feel more confident and happy.

I’m not sure if my hair will stay red forever, but right now, it’s given me a powerful push in the right direction toward feeling like the best version of myself. For now, I’m going to bask in my changed hair color and continue to find new ways to keep these feelings up even if I let my natural color grow back.

I’ve purchased a couple of boxes of hair dye to use every 4 months or so to upkeep the red color. It’s amazing how something like this can make such a difference. I wasn’t going to let multiple sclerosis define my mental well-being. At least I have some control over something myself.

I have to say I was in a better mood when I went to the store yesterday and even spent more time talking to the clerk and customers. Nothing big, but I know I was smiling more. That’s always a plus.

Don’t blame yourself for the bad days, and don’t despair when they come. Pay attention to your body’s cues, go easy on yourself, and know that, at the very least, making a small change here or there can help lift your mood for the better.

I don’t take good picture, but here you go… no makeup and all.

To Meme or not to Meme? That’s the question!

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I’ve put together a collection of my most wonderfully random and entertaining images and memes to keep in one convenient place. It’s a work in progress but hopefully it gives you a laugh and something to think about along with something to share with others to raise multiple sclerosis awareness.

I hope to add at least 2 to 3 images a week so makes sure to come back often. You can find the memes easily from the websites by following the link labeled “MS memes” in the top menu bar at positivelivingwithms.com.

When I first started Positive Living with MS I came across people offended by my sarcastic yet pointedly accurate MS images on topics that were a bit hards to talk about. As time passed the narrow-minded, prudish followers went away. I still meet people that don’t like my use of humor to talk about my life with MS. I find that in the humor there are some heavy subjects that will bring you to tears… but it’s all a part of a life with MS that needs to have more awareness.

As I’ve said many times, it’s better to laugh than cry about what we deal with. It makes the days brighter, the load lighter and the pain easier to handle, both emotional and physical. So laugh and don’t feel bad for it. It does a body good.

MS Facts Memes

Humor Memes

Inspirational Memes

MS Symptom Memes

 

Incontinence… ain’t nobody got time for that!

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Have you heard about the adult diaper spas that have opened in the UK and the USA. Yes, you read that right. It’s a place to nurture and pamper diaper lovers and enthusiasts. It actually caters to people with a psycological disorder that’s been growing among adults over 21.

Sorry, but I don’t see the fun or joy in having to wear a diaper because my bladder or bowels aren’t working correctly. Yes, I have had problems with bedwetting before… but the previous time was when I was five years old!

When I was in the hospital last year I wasn’t able to make it to the bathroom on my own and my bowels were like clockwork. I had to go every morning by 6 am but since I couldn’t get out of bed on my own I wore an adult diaper and the nurse had to clean me up because I made a mess. Two weeks of diaper changing was enough for me.

I was in the hospital to have my bladder removed. For about 7 years I had used a suprapubic catheter (SPC) for bladder incontinence. The catheter was placed in my bladder to help empty my urine but the SPC wasn’t working well for me and of all things it was painful. I had bladder stones that were causing me problems and blocking the flow. When the urologist had recommended removing my bladder entirely I was a bit nervous, but excited as well about the concept. I thought, this will make my life a bit easier to manage than it has been. I’m ready for anything that will help me out.

When I finally got home from the hospital after my bladder was removed, I was able to manage things on my own and so happy. It’s been a year and I believe it was one of the best changes for me since my MS diagnosis over 10 years ago dealing with continued incontinence troubles. I now have a pouch I wear on a stoma the doctor created for my bladder. The pouch is my makeshift bladder and sits outside of my belly area near my belly button. I replace the pouch about every 3 to 5 days but empty it as often as needed like you would a normal bladder. No more issues with trying to hold my bladder and making a beeline to the toilet.

I have to say laughter is the best medicine unless you are dealing with incontinence. I had a feeling of relief knowing that I wasn’t the only one who leaked a little when I sneezed, moved around, or coughed. I wasn’t the only one that had to change their clothes after misjudging their bladder timing.

There’s nothing wrong with finding humor in the uncomfortable aspects of life. Certainly leaking pee is something that happens to many people with multiple sclerosis and although there are certainly degrees of it where some find it obviously debilitating, others just find it annoying. There’s nothing to be ashamed of when it comes to having a badder that rebels. Humor really does help. I talk with people a lot about incontinency. I just can’t hold it in. (grin)

Even if your experience isn’t that bad like it only happens once in a while or it doesn’t disrupt your life very much, there are still reasons to address it. The good news is that it’s never too late to strengthen your pelvic floor. Ask your doctor about it or even your physical therapist about which exercises help. I wasn’t able to use those muscle but for many people doing pelvic exercises helps restore controlled use of the bladder.

Either way, just keep in mind that although there is nothing to be ashamed of when you leak pee, you are certainly far from alone. Will you make it to the bathroom in time? Depends! – they really do help. (Grin)

Be strong

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One of the great American authors, Alex Haley, had a picture on a wall in his office that attracted much attention. It always aroused the interest of his visitors because no one could understand the significance of the photograph to the writer.

On one occasion, a visitor with a perplexed look on his face asked, “Alex, why do you have a picture of a turtle sitting on the top of a fence post?” Haley replied, “I try to remember how this turtle – me – got on the top of that post.”

Sometimes, perhaps most of the time for many of us, it is difficult to admit that if it weren’t for the help of others, we would not be where we are. From our earliest moments until this present hour, we are encouraged by nearly everyone to believe that “You can do it by yourself!”

But this is not true! We all need the help of others. Each day people come into our lives who need help, encouragement, inspiration, an act of kindness, words of sympathy, or a look of empathy. Receiving and giving help are basic human needs and behaviors.

But when you are living with a chronic illness like multiple sclerosis, asking for help isn’t always that easy. It seems like it should be, but reaching out can be tough. Many times you end up feeling vulnerable, weak and exposed for reaching out. And sharing your needs means the reality of how bad your illness has gotten scares you. You would rather others not know in order to keep them from worrying.

This can create a vicious cycle, leading to anger, frustration, and feelings of helplessness or hopelessness. Things cannot get better if you don’t acknowledge what is wrong. If you find yourself overwhelmed you may benefit from talking with your doctor about what’s going on. They have access to great resources that can help.

I have news for you today… reaching out to others for help is one of the strongest things you can do. It means that you are standing up to unspeakable forces and looking MS in the eye proving you aren’t afraid of what is happening. Only the strong can do that. And you are strong.

No matter how weak you feel, no matter how beaten or how bruised you are, I promise you, you are more powerful than you can possibly imagine. You’re living with the impossible every day.

And like the turtle on the fence post… you have many people willing to help if you just reach out to skilled people who have the resources to put things into action for you. Are you on the fence post to learn to fly or to learn to repel down?

“Be strong.”

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!

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