Walker Archive

11

The Devil Inside: Living with MS

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Part 1: Shaking the Devil

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” ~ Khalil Gibran

It can be hard to stay positive when so many negative things are happening around you. My cursed search for a meaning to the madness that is multiple sclerosis (MS) consumes my life.

Living with MS is a rollercoaster. Some days are up and some days are down. Happiness is here and then it’s gone, leaving a cloud of smoke behind. And just when I think I’m getting some relief and can finally breathe clearly, it strikes again.

It’s like the devil has found a home inside my body. Nipping at my faith. Growling. Constantly showing his teeth. Scarring my spirit. Marking my soul.

The power MS has over me is so strong, I start to believe I’m chained to it and there’s no escape. It feels so bad; I would trade anything for a cure. That’s when I can’t see beyond the fog of the disease and I wonder if the pain will ever let me go. Like nothing good will ever come again.

I hate how it affects me. It is mind-numbing the paranormal way it constantly tingles in my fingers, manipulates my thoughts, and destroys my confidence. I’ve cried so much, I feel like I’m drowning.

I just don’t comprehend what’s happening. If I keep getting weaker, what am I going to do? My mind says, “You can handle it,” but my body refuses to follow its lead. The worst part is, I’m beginning to sense there is nothing I can do about the progression. I listen to my doctors, but sometimes I feel stupid for taking all these different types of medicine. The side effects are draining. It’s like I’m killing myself as I try to kill MS.
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Part 2: An Isolated Nightmare

It’s the stuff of nightmares.

But thanks to time and loved ones, I’ve been able to craft a new normal. Be it with a limp, cane, wheelchair, or scooter, I’ve managed to face and live through it all.

Still, I never imagined it would get this bad.

In the midst of losing my physical abilities, I’m also afraid of losing myself. I’m scared MS will take away me. But my competitive nature refuses to let that happen. It’s become my goal to continue being me, in spite of MS.

One of the most aggravating things about MS is the social isolation it begets. As if society has forgotten about me.

It’s just so hard to fit in when I can’t drive. I have major fatigue issues, and sometimes I get confused during basic conversations. My limitations cause me to feel cut off, especially when I’m surrounded by a group of able-bodied people.

It’s particularly hard at parties and gatherings. Normal interactions turn awkward or involve just a smile or a wave, but fail to develop into standard encounters. I’ll sit in the middle of a room and people will walk by me like I’m not even there. Since I just can’t do “normal” things, it’s as if I’ve just disappeared, gone missing without a trace.

I think the problem is related to a lack of understanding. When I tell people I have MS, they look at me like I’m a unicorn. It’s so misunderstood, most people shy away from spending time with me. They’re not sure how to treat me or what questions to ask.

To counteract the loneliness, I continually reach out to people who are on a similar path as me. When I do, I always seem to have a great time. I find myself talking for hours and usually making some new friends.

My family, friends, and other people with MS provide that much-needed support and companionship. I even use them when they are not present. When my feet go numb, I think of them. When my fingers don’t work, I think of them. When I try to walk and fall face first to the floor, I think of them.

Nothing else compares to the love of my family and friends. That love allows me to freely accept help and accommodations, ultimately giving me a better life.

Scared initially, I’ve now accepted my diagnosis and discovered how to incorporate MS into my life. I’ve learned to soldier ahead. Well, at least I try to. And as I look towards my future, I know there will be dark days, but I also can see the sunrise.

Despite the trials and tribulations, I choose to focus on the positives and leave the rest to faith. I can continue to harp on all the negatives or I can choose to be happy. I’d rather live my life no matter what obstacles come my way, have fun, and hope the universe hears my prayers while I try to stay positive about my life with MS.
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Original article appeared on Healthline.

36

Small Victories

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Some mornings I wake up and I just can’t do it. I don’t want to battle MS anymore. But somehow I muster up the strength to fight the good fight and begin my day.

I have tremors in my hands, which makes using them exceedingly difficult. At times I’m unable to hold a fork or spoon and transferring myself in and out of my power chair is becoming more challenging due to my lack of strength and mobility in my arms and legs. Most nights I feel like someone borrowed my legs and ran a marathon.

Lately my body aches wake me up before the rest of me wants to be awake. Then I spend the rest of the day exhausted and wanting to just climb back into bed.

I can remember when I was so active. I did so many things. What happened to me? Why has MS consumed so much of my life?

It is so frustrating to have such a hard time even taking a few steps without using a walker or the wall. I feel like a wax dummy fighting a fire that is MS.

The other day after taking a nap I woke up and steadied myself to go to the restroom but my legs didn’t follow. I quickly fell straight to the floor. I gathered myself and began to crawl to my wheelchair. It took me about five minutes to situate myself in my chair and make it to the restroom. But I did it and I was so happy.

Believe it or not, nowadays I consider that a victory because no one saw me crawling on the floor and I was able to hold my business until I made it to the restroom.

I guess when life hands you hard times any positive moment, no matter how small, is welcomed. Even the small victories can be huge.

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35

Can You Relate?

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Sometimes it’s nice being amongst those who can sincerely relate to and understand me.

Despite the sun sucking the energy right out of me at 85° Fahrenheit, I sat outside a local park coffee shop for an hour and a half and mingled with a newfound friend. She just may have thought I was drunk because I was so giddy to be in her company.

She’s actually the group leader of my local MS support group. I’ve been complaining about being lonely and bored. Lately I’ve felt confined to this condo. Once its newness wore off reality set in.

Thanks to the quasi independence my power chair affords me, I can continually visit the lobby, the mailboxes, and the sitting area. I’ve befriended just about all the employees in the building. I wonder if when they see me they say, “Oh my here she comes again.” Regardless, I love getting dressed and yelling to Tommy, “I’ll be back soon!”

I am beginning to almost physically feel the degrees of separation between my closest friends and I expanding. It’s no ones fault. It’s just a function of time, proximity and the business of life. I mentioned I was bored and lonely in my monthly MS support group meeting. The next day the leader called me up and invited me out for coffee! What a trooper.

At the park

Don’t get me wrong, horseback riding and Tommy are great. I just need more female camaraderie. The point is sometimes you’ve just got to go out and get what you want for yourself. And that’s exactly what I did.

In turn that makes me feel…well…PROUD!!!

Plus my sister is coming back in town Friday. It can’t get any better than that.

46

Tall Order

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Sometime ago, I promised myself to keep moving forward with MS instead of letting it drag me into an abyss of loneliness, self-pity, anger, and depression. I reluctantly accepted the fact that it’s highly likely I will never walk again. Of course that comprises all the things that are included with the privilege of walking, such as driving and any semblance of independence.

Now I am having problems with my hands! I’ve mentioned that I need help completing common daily tasks, like combing my hair and using my computer mouse. I just do not have the physical strength anymore. I’m using dictation software now because of it. But it’s so much more than not being able to type or open a jar of peanut butter. Usually in the morning I’m okay, but as the day progresses my functionality diminishes.

My worse nightmare came true years ago when I was relegated to a wheelchair. And guess what? I adapted and survived it. A fellow blogger reminded me, “all the things that I’ve been afraid of, or worried about in the past, are water under the bridge now.” So much truth resonated in those words. The life I lead now was unimaginable to the former able-bodied Nicole. But I’m still here and I’m going to lean toward life.

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It won’t be easy, but at least I’m not alone. My goal is to be satisfied with what I have and take delight in the way things are.

A very tall order for anybody.

31

MS Milestones

broken computer

Today is different. I’ve been having increasing difficulty typing. I previously promised myself that if this ever happened I would use assistive devices available to me. That is, no matter how humbling it may be. Because like it or not I’m not the same woman I used to be!

Now, today is different because I’m using dictation software in order to complete this post.

I guess you can say it’s a milestone of sorts. In fact over the course of the last few years every time I had to start using a new device I considered it a very big deal. Whether it’s my cane, walker, wheelchair, scooter or power chair, I had to accept my new reality. Or as we say every year it seems to be something, and here once again is one of my new normals. To be honest though, I saw this one coming. More often when I’m tired, I’m require help to do normal, easy, simple tasks; for example buttoning my shirts or putting on my own deodorant or sometimes even feeding myself! Thank God for my husband and my mom.

Fortunately, with this computer program I simply speak into the microphone on the computer and it in turn types what I say. I really, really didn’t want to use it or anything else. It was hard to accept any kind of help at first. But, I figured in order to keep with what I preach… I had to. Writing has become my outlet from MS. I’ll be damned if I let multiple sclerosis shrewdly yank that away from me too.

MS Sucks

At first for me, like many others, multiple sclerosis meant only blurry vision. But look at me now. I imagine I’m going to accept my new typing limitation and move on to embrace this dictation software on my computer. I may even be drawn to purchase brand name fancy software. Who knows?

I’m even having problems using my computer mouse. My hands just will not listen to me. I did however read about a device that moves your mouse with your eye movement.

Maybe in a few months I’ll be ready to tackle that one.

32

Twists and Turns

A long road

My dad, who had a stroke a couple of months ago, shared a card with me that at the time we both could relate to. It said, “Do not worry that you’re not strong enough to make it before you begin. It’s in the journey that God makes you strong”.

The card also reminded me of a fellow MSer I met in passing. The encounter was a long time ago when I was still walking on my own. She was admiring how much physical ability I possessed. Then she lowered her head and confided in me, “Nicole, I can’t even lift myself off the toilet.” I subsequently squeezed her hand, offered a genuine show of support then we exchanged contact info and departed.

Now, years later, as I sit in my scooter I’m probably closer to her than she will ever know. I no longer have her info so I can’t reach out. Besides, what am I going to say? “Hey I can’t lift myself off the toilet anymore either!”

I am always in the toilet

I would’ve never thought I’d be here today. It’s been a long journey, but Tom (my husband) and I have made it through. He hears me racing to the restroom and just meets me there. He saves me from actually having to ask for help. It’s a very humbling experience. Actually, it’s mostly in the mornings that I’m the weakest.

How does one prepare themselves for this?

This journey has made me into a different woman. I’m weaker yet stronger in more ways than one. Somehow my dad, Tom, and I are making it through despite all the wired twists and turns…but certainly not on our own.

32

No Escape

It is hard to get away from MS.
I would love to say one day, “I used to have MS.”

But since that’s not going to happen… at least not this weekend, I think I will stick with reality.

In my quest to escape multiple sclerosis, I’ve been weighing the possibility of getting a Baclofen pump implanted in my abdomen to combat my tight leg muscles. According to the Baclofen pump website,“This technology is to loosen overly tight muscles. The key is a surgically placed pump that continuously delivers medication to your spinal cord fluid.”

Sometimes my legs are like logs and then others times they are “normal”. When they are log like it can be pretty grueling to accomplish everyday tasks. Making it to the restroom on time is more difficult and getting in and out the bathtub is nearly impossible.

In my dream world, I’ll get this pump that delivers a muscle relaxant and then with a little strength training, I’ll be able to walk with a walker again. I just don’t know if that’s how it actually works in the real world. In all likelihood I’m probably not stiff enough for this therapy. Also, I’m not sure if Medicare covers it.

The truth is, my muscles are too weak for walking so tight legs may not even be the main problem. I am currently taking the Baclofen pills so I may just stick to the oral medicine.

Either way, the one thing I’m sure of is that there’s no escaping MS.

But that won’t stop me from trying.

River walk event