The struggles dealing with multiple sclerosis

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I woke up yesterday morning to a storm blowing outside…rain, wind, thunder. Actually, it had been raining for days. Today the morning temperature has dropped making it a bit chilly out but humid… which is my enemy. It’s the kind of weather that makes me want to curl up in my favorite chair, put a good movie on the TV and veg with a cup of coffee and my soft cuddly blanket.

Interestingly enough, the harshness of the wind cleared up just as quickly as it had started. It’s still dreary out, but much calmer than before and today the sun should be out. Did I mention that the air is humid? Humidity and my body don’t go together very well. Neither does heat or cold. Cold stiffens me and heat weakens me.

I call the struggles we go through in our life with multiple sclerosis “storms.” Storms because although they have the potential to turn our lives upside down, send everything into chaos and create massive devastation, they never last forever. Every storm has an end, no matter how fierce or destructive it may be.

If you are in the middle of a storm right now, hang on. The wind may be blowing and the rains may be pouring down, you may be experiencing a volcanic eruption or even an earthquake that is breaking apart everything around you, but your storm will end. The winds will cease, the trembling will stop, the clouds will clear, and the sun will shine once again.

I know it’s hard to see any good when everything around you seems to be falling apart. It’s not easy to rest when you’re dealing with a chronic illness and everything that comes along with it. Most of the time, you feel like you are living in a perpetual season of storms, pains and heartbreaks. But in the middle of all the symptoms and the craziness, know that you are not alone.

I have an appointment to see my doctor today. It’s just a check up so I’m not expecting anything unusual. Next week I will see my urologist to make sure things are okay with my urostomy. I have already had an ultrasound so he will have the results to go over with me. Thankfully since having my bladder removed I’m doing much better than when I was dealing with a SPC (suprapubic catheter) to drain my bladder. My bladder issues are much more manageable and easy to handle by myself now. I have even thanked my doctor for it… which doesn’t happen often.

Today can be the best of times or the worst of times, but you get to choose hope over fear. Hang on to hope for a better day today than yesterday.

Hope is what gets you through the struggles and helps you rest when you’re weary. Hope is what wakes you up in the morning and pushes you through your day. Hope is what clears the cloudy skies allowing the sun to shine in the middle of a downpour. Hope is what lifts you up when you’re too weak to even move.

Even if you don’t see the good right now in what you are facing, hang on to hope! It’s there even if it’s hiding in the shadows. There’s a twinkle just over there… do you see it? That’s hope!

The choice is yours

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When I got up this morning I saw that I had put the clothes out that I wanted to wear. I stopped for a moment and thought, why did I do that? Then I remembered I have an appointment today to get the oil changed in my van. You wouldn’t believe how many times I’ve missed appointments by not setting my clothes out. But even in doing that, it’s still possible I may miss the appointment. Such is the vicious cycle of my brain trying to be normal in a chaotic world of screwed up nerves.

I have to go to the car dealer to get my oil changed because most establishments get a bit nervous knowing that there is no drivers seat for them to sit on to pull the van in to the shop so they can do the work. I know the dealer just places a bucket or a folding chair down to sit on so they can drive. They have no problems doing that. Maybe the others think the workers may get into a wreck driving the few yards needed to do the work.

My van is set up to use hand controls for a powerchair (wheelchair) driver. All the pedals still work for a normal driver if I place the real seat back in, but then I couldn’t drive myself to the appointment which makes no sense to me. I’m trying to be independent. That would be the opposite. I know I will have to pay more for the work but that’s better than not getting it done at all.

I have noticed that at times I have to compromise my choices in order to remain independent and that’s not always bad. Sometimes different choices are worth selecting. Sometime they make life better. Sometimes they are difficult to navigate. Sometimes they are worth the wait.

When was the last time you struggled with a choice? Maybe it was this morning, when you decided to hit the snooze button—again. Perhaps it was when you left your closet in a shambles after trying on seven different outfits before an outing. Maybe it was at the doctor’s office looking over different multiple sclerosis treatment options. Or maybe it was last night when you contemplated your employment choices or lack thereof.

Often, making a decision—even a seemingly simple one—can be difficult. We are all different and live unique lives, so there isn’t a “one size fits all” approach to independence. Weigh the options, look over the possibilities, and choose. Make each choice with courage, confidence, and determination to take on the journey, regardless of how difficult it might be.

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!

Yes, Multiple Sclerosis Is Real

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Sometimes it feels like my head is stuck in a shaken snow globe that’s waiting for the flakes to settle…only the flakes never do. That’s the dizziness and vertigo I’m experiencing right now.

Most days it seems I am fighting a never-ending battle. There are times I wake up thinking all is good and that the spinning is gone, but as soon as I get up and start going about my day…boom, it’s back. It never seems to go away for long. I think it just takes periodic bathroom breaks or trips to the refrigerator for a snack. I’ve tried to talk it into moving to Kalamazoo, but for now it has no plans on leaving.

Living with the vertigo, or any MS symptom for that matter, is not an easy thing to deal with day in and day out. It can cause you to feel like an outcast and all alone. For many, that’s the very reason they give up and withdraw from life.

I was tested for BPPV (benign paroxysmal positional vertigo). It’s when small crystals of calcium carbonate within one of the organs of the inner ear becomes detached and moves into another part of the inner ear causing dizziness. I didn’t have that. So it’s more of a mystery for now.

The pressure of trying to explain yourself all the time can be tiring, especially when those explanations are met with blank stares or unsympathetic responses. No one wants to be told to suck it up every time they are having a difficult moment. No one wants to feel like they are losing it because the people around them just don’t get it or care to want to understand.

Know that you are not delirious. What you are experiencing is real, and although it can be difficult to make it through your day, or even to get through the next 5 minutes, you have to keep going. I believe in you. Take it one step at a time… one breath at a time if needed.

I’m going through 3 days of Solu-Medro infusions to help restore some of the energy I have lost. I have no idea where it went but it seemed to take a vacation without me. I can’t stand up without my legs giving way within seconds. Trying to dry myself off after I shower is a near impossibility. I more drip dry than towel dry. So I just wrap myself in a robe to dry off.

I don’t have enough energy to squeeze a bottle of mustard for a sandwich. Driving make me dizzier than dizzy. All the movements around me affects my vertigo which goes haywire with just a hint of movement. So much craziness… and I hope the infusions will help restore some of my energy and give me my life back. For know it’s just a waiting game filled with lots and lots of hope.

Join me and choose to love yourself enough to hang on. Today is a new day filled with new possibilities. Remember, you made it through yesterday, you made it through some other really tough times too…you will get through today as well!

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