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!

Vision problems and multiple sclerosis

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My eyesight has been giving me more and more trouble lately. When I wake up in the morning it takes me more time than usual to properly focus. I will prop myself up in bed and have to rub my eyes countless times just to see straight.

At that time of the day don’t expect me to be able to read a text message, email or anything else for that matter, without difficulties. If a text message is not responded to for more time than what was expected, don’t hold it against me. I will eventually get to it… by next year.

At the age of 12 I started wearing glasses and hated all the difficulties just trying to keep them clean or to not fog up in humid weather. Twenty years ago I got Lasik surgery to correct my vision. According to the Ophthalmologist, now my eyesight is 20/20. There’s a lesion in my brain that is causing me to have some blurred vision in my left eye but other than that, all is well there.

The problem for me is that the muscles in my eyes are weak and causing me to see a shadow beside each letter. It’s called double vision. It’s like a copy of the word is overlapping itself but slightly offset making a confusing mess. Even making the text display a larger scale helps to read clearer but doesn’t remedy the issue.

Just writing this post is cumbersome and takes more time than usual to complete. Of course I have become a hunt-and-peck typist unlike in my glory days where I could type over 75 words a minute. Between eyesight and numb fingers, I feel helpless with the internet.

And don’t even talk about telling me to use a speech to text app. The apps always misunderstand what I’m saying and interpreting it with a bunch of nonsense. Then once I correct the word errors, the punctuation takes extra steps to properly add. It’s a no win situation.

I have noticed when I’m watching TV I tend to close my left eye in order to view things clearer and to help keep me from getting dizzy. Yes, my eyesight makes me dizzy at times. Who wants to be on a rollercoaster ride while watching a movie? Not me! Thus the one eye method works. It’s like my eyes aren’t tracking exactly one with the other as they should.

My advice… relax and be grateful for whatever sight you have. Recognize the challenges that show up and look for the bright side through it all. Appreciate the adventures you may encounter along the way for there will be many.

Today I didn’t grieve for my health issues

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How many days do I get up in the morning and say “Maybe my hands will work for me to get dressed without difficulties. Maybe I can get through my morning without a bathroom mishap. Maybe the pain in my body is manageable and doesn’t interfere with my quality of life. Maybe multiple sclerosis will behave and allow me to run some much needed errands.”?

Sometimes feeling lonely overwhelms me. I have sensed a feeling of abandonment more times than I care to admit. Not because of anything in particular, but just because I find it’s not that easy to get some much needed help for everyday events like preparing a meal or cleaning the house.

Recently I have noticed that I get upset easier. I have been in arguments or quarrels for no reason at all. My emotions are just on edge and have a tendency to overwhelm me. I feel like people I used to count on have moved away from my life which in a way is something to be grateful for… but still unnerving. I don’t need complicated people to complicate my already chaotic life.

Today I didn’t grieve for my health issues… I looked at my life and was thankful for my doctor which I will be seeing later in the day hoping it’s a good appointment. I looked out at how hard the wind was blowing and was thankful that I have a roof over my head, heat in the house and food in the cupboard. That I have friends and some family members who love me and contact me just to see how I’m doing.

My back porch has been setup with comfortable seating to enjoy the warmer weather when it comes and it’s been cleaned… the spring cleaning way. It was a much needed job to get done. Family came by unexpectedly and helped me out. That was a much appreciated thing to have happen. How can I show my gratitude? I feel like just saying thank you to everyone in my life isn’t enough gratitude, but it is.

I can do acts of kindness. I can perhaps slip a card of encouragement to someone secretly that I know can use it. Often, many people I see just want to talk to someone. That doesn’t cost a penny. For the most part, my time is free to give. Maybe some people won’t understand how special those kinds of times are, but I do and will still cherish them.

Today, ask yourself what you have done lately to show your gratitude for the day? Sometimes all that’s needed is our attention and looking around just to notice what’s actually there. There’s always something. What are you grateful for?

 

 

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.

A multiple sclerosis life can be challenging

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I woke up this morning uninspired by the coming days. I got my coffee and thought about what I had to do for the week. Not one of my favorite things because I know it’s going to be hard days ahead. A part of my lawn needs to be tilled and grass seed planted to remove the centipede grass that has taken over from the neighbors yard. My lawn is Bermuda grass. It’s supposed to rain tomorrow so I want to get it done before the rain. The seeds will need the water.

I also have a section of lawn in the front yard that has settled making a hilly part in that area a bit wonky. I need to dig up a portion of it, level the earth there, and replant the unearthed grass. It should be easy right? Ugh, wrong.

My legs don’t hold me up well and using my old powerchair that I use for gardening work is not that easy to use for the hard work ahead. My hands don’t work well either so it’s going to be a comical mess. I’m trying to psych myself up for it.

The thing I have to remember is that I’m not invincible and can’t do things as I could in the past. So what gets done, great! But be sure to give myself some grace as I go and don’t be too hard on myself for things not going as planned. That’s the actual hard part.

In my mind I should be able to do it, but I know my body will fail me along the way, and that’s okay. If I could hire a gardener, I would. That’s a given. But the work is up to me complete. Sometime that’s the hardest part… overcoming my bodily limitations and being okay with the outcome.

I must always pay close attention to how much I’m pushing myself and the added demands I’m placing on my body. It’s okay to take breaks and rest when needed but to always come back with renewed energy and determination. A multiple sclerosis life can be challenging, but it’s important to remember that we are all capable of overcoming obstacles.

Although I can’t plan for every hurdle I might encounter, understand that a slow but consistent effort is vital to rebuilding my strength and nurturing my body.

At times like these I’m reminded of the following quote…

When things go wrong, as they sometimes will,
When the road you’re trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don’t you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don’t give up though the pace seems slow –
You may succeed with another blow.

Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor’s cup;
And he learned too late when the night came down,
How close he was to the golden crown.

Success is failure turned inside out –
The silver tint in the clouds of doubt,
And you never can tell how close you are,
It might be near when it seems afar;
So stick to the fight when you’re hardest hit –
It’s when things seem worst that you must not quit.

– Edgar A. Guest

 

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!

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

 

Chocolate… is it good for multiple sclerosis?

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It’s been known for years that flavonoids in cocoa help fight fatigue. These chemicals possess anti-inflammatory properties that may be especially beneficial for people with multiple sclerosis. I know that may sound strange to you, but cocoa (chocolate) has been studied for just that purpose. Amazingly enough case studies show that eating cocoa does just that.

Let’s face it, no matter how you enjoy it — as a candy bar, in a hot drink, drizzled over ice cream — chocolate brings joy. It’s a wonderful flavorful treat. Now, I’m not talking about melt in your mouth milk chocolate, but dark chocolate is what has most of the health benefit for our bodies. Dark chocolate has between 50% and 90% cocoa solids. The higher percentage the better.

I don’t know if it’s because dark chocolate has a slight bitter taste or because you need to ingest it slowly to actually enjoy it, but I happen to think it’s a great alternative to pharmaceuticals. I have always said that the day after a chocolate filled holiday is my favorite day because chocolate goes on sale. I don’t know if it will be on sale after Valentine’s Day this year as in times past, but any discount would be welcomed due to the high price of food around the world today.

Results showed in the cocoa study that participants experienced a 45 percent improvement in fatigue. In addition, the high-flavonoid group was able to walk farther than those in the low-flavonoid group during a six-minute walking test. They also reported less pain.

MS is a challenging disease, and it requires innovative approaches to find ways to prevent, diagnose, and treat it. Could chocolate make multiple sclerosis fatigue better? Only time will tell but I welcome the challenge.

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)