Moving forward Archive

11

I Am The Captain Now

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“The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life; and the procedure, the process is its own reward.” ~ Amelia Earhart

I’ve become a spectator in my own life. No control. No say. No power over what’s happening to me. And it’s my own fault. I let someone else be the driver while I comfortably recline back in the passenger seat. Hypnotized by the easy route. I’ve become no more than a passionless piece of cargo being hauled from one doctor’s appointment to another. Drawn to the effortlessness of an unperturbed existence. Where all decisions about my life are left up to others and I’m pretty much unseen.

Apathy is like being trapped in an endless tunnel with only a glimmer of sunlight in the forefront. And once you reach the tunnel’s end, the light quickly disappears and you continue on the same dark road as before. I’ve been down this path so many times I’ve memorized the way. There’s no need for directions. I just sit back and let life happen to me.

This occurs because I’m scared to take charge. So much, I shrink from the anxiety of making decisions. At times, I feel so small; nothing grows but my fears about the future.

If I let other people make my choices, I’ll have someone to blame. I’ll have someone to point the finger at when things don’t go right.

But I’m growing tired of thinking this way. I recognize I need to be the driver and take control. So instead of blindly following a course, piloted by someone else. I am taking back the wheel and telling everyone, “Look at me! I’m the captain now! I’m in charge of my life!”

12

Like A Child

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“You may not control all the events that happen to you, but you can decide not to be reduced by them.” ~ Maya Angelou

As a child, I couldn’t wait to be all grown up. I hated how adults unapologetically and constantly made decisions for me. I wanted to make my own choices. What I failed to realize is that being a decision maker also makes you responsible for the outcomes associated.

I learned that lesson during my teenage years by making bad choices, but as I matured I made better choices and my mistakes decreased. Now when I decide to do something, nine times out of ten, I recognize when it is a bad choice. If I elect to eat three cupcakes instead of one or if I stay up late watching a movie despite having an early morning appointment, I accept my bad choice. I also prepare myself to pay the consequences for that choice.

If only all of my decisions were so trivial everything would be all right! I run into problems when I have to make important decisions. Making the wrong choice in these situations can lead to treacherous outcomes. That scares me.

Since being diagnosed, I have been on various MS medications. Regardless of counsel from my doctors the decisions to switch, start, and stop certain drugs have been ultimately up to me.

Recently I was faced with the decision to begin taking a new treatment and I chose to opt in. I don’t know about you but I am always looking for that miracle cure. I was hoping to see some inkling of improvement but that really has not happened. Every time I get fatigued or when I can barely get out of bed, I question my decision. I know this is not relational thinking but I can’t help it. I am worrying that maybe I made the wrong choice and should have stayed on my previous medication.

I hate this MS brain of mine. It is causing me to second guess my every move. Of late, brain fog seems to be increasingly blurring my cognitive reasoning abilities. Because of my decreased aptitude, when I make life-changing decisions my husband is always with me. We talk and weigh our options but thankfully in the end the final determination is mine. When he disagrees with me I fight him tooth and nail.

One time in order to win my argument I even proclaimed, “It’s my life and this is what I want to do”. He ultimately gave in to that one, but I am not sure how long he will allow it if I continually make bad choices. I don’t know if changing my medication was a bad choice but right now it sure feels that way. That scares me, too.

Making my own choices is my last bit of independence and I’m not ready to relinquish that privilege. When my decisions are overruled I feel belittled and sometimes embarrassed if done in public. My opinion is being reduced to one of an adolescent. I do recognize that I may have to defer more of my decisions to family as my decision-making abilities decrease. I just wish there was a way I could do this without feeling like a child again.
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Original article appeared on -The National MS Society Blog

20

The Funk

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“Sad things happen. They do. But we don’t need to live sad forever.” ~ Mattie Stepanek

Have you ever been mad but really can’t figure out why? I can’t explain or understand the reason, but for the last couple of weeks I have been upset at the world. I am in what some people might call a “funk.” This is where no matter what you do or what good happens you can’t seem to be happy. In my case, if I won the lottery right now I would be mad over paying the obligatory taxes!

This space is not new to me, but I always have a difficult time handling it. Unfortunately, it causes me to watch life pass me by. The worst part is I have been slapping my new-found frustrations in the faces of those around me–i.e., my husband. I receive his hints on ways to conserve energy as insults. I take his suggestions of traveling when the sun is down as belittlement. My responses to his ideas are often aloof and abrupt. Sometimes I don’t recognize what I am doing until it is too late and we are both mad. The “funk” makes me want to sit at home and do nothing. The last thing on my mind is going out in public and mingling.

But despite how I treat him, my husband still tries his best to keep me involved and interested in the world around me. In order to push through the” funk”, I have been halfheartedly agreeing to venture outside of my four walls hoping that an outing will snap me out of it. So far it has not helped. Going out actually seems to be making it worse. Being among a bunch of able-bodied people bothers me. Jealousy? You bet!

When I see individuals walking around in the mall or jogging at the park I wish I could join them. I become envious and bitter just by seeing people enjoying themselves. I can’t do what they are doing because of my body’s heat intolerance, lack of balance and my biggest nemesis, fatigue. My resentment makes me blind to having fun. This reality ruins the purpose of the entire outing. Again, I seem to play a mere observer.

I try to focus on the things I am able to do, but that trick can only take me so far before I begin to reminisce about days of old. The measures I used in the past to stop the “funk” aren’t as effective anymore. My attempts at outside excursions have fallen short and thinking happy thoughts seem more like a cliché than a remedy.

To be honest, I think this particular “funk” is because I’m quickly getting weaker. Every time I sit on my scooter I feel as if it’s sucking the strength right out of me. Everything is hard. My “new normals” are coming faster than I can accommodate; faster than I bargained for.

In the end, all I did was let loose a healthy little cry. Seems like every now and then that’s all I can do.
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Original article appeared on -The National MS Society Blog

12

Try Again

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“Courage doesn’t always roar, sometimes it’s the quiet voice at the end of the day whispering ‘I will try again tomorrow’.” ~ Mary Anne Radmacher

I have attended Mardi Gras festivities in New Orleans, Louisiana since I was a child. It’s crazy because the parades and parties start a month before the actual big day (Fat Tuesday). And every year, I am there either partying with friends or going to parades with family.

But this year, I felt different. I didn’t want to do anything. I blamed my outlook on fatigue and being wheelchair bound but really that wasn’t it. I think I was a little down and feeling sorry for myself.

Then I got the following message from my Internet friend, from Canada, Christine.

Nicole- “I am sending you this message because I am heading to New Orleans for Mardi Gras this year and I am hoping you could give me some insight as to going with a disability. I have rented a scooter for the trip, as I want to conserve my energy and not get too exhausted. We are going for my 40th birthday and I had real reservations about it but thought it isn’t going to get any easier in the future and I have always wanted to go. Thanks for any advice you can offer in advance and keep up you wonderfully honest outlook on life.” – Christine Kens Rutherford

Wow!

After reading that, how could I say no? I know Christine because she reads my blogs and I was excited to actually meet her in person. So I quickly shook off the blues and began planning some places to go and some parades to attend. I’ll be damned if I let a Mardi Gras rookie out do this veteran. So I set up an itinerary for myself.

She got to New Orleans on a Friday night. The next day, in between parades, I met Christine, her husband Kip, and two friends Tahir and Shadya, for beignets in the French Quarter. We sat, talked and ate. Which are all my favorite things. It was so great. I was really weak but still able to ask a couple a questions I had about how she was dealing with MS.

After about an hour, we said our goodbyes, Christine got on her scooter and off they went to another parade.

I had a wonderful time and was really inspired by Christine. She doesn’t let MS stop her from living a productive life. Even the times when she isn’t able to achieve what she originally set out to do, at least she tried. And that’s something MS can never take away, your ability to try.

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11

A Piece of Peace

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“Of course there is no formula for success except, perhaps, an unconditional acceptance of life and what it brings.” ~ Arthur Rubinstein

Did you know that acceptance is a choice that you have full reign over? Now they tell me! I do have some choice in this horrific disease.

But, there’s a catch.

I saw a tall case of stairs the other day, it nearly brought me to tears. Why? Well, mainly because today I’m downgraded to a wheelchair. While not too long ago I would have happily opted to take on those stairs, now I can’t. So, in the cloud of my sorrow, before I could even collect myself, my husband dared me to think about what I could do. All I wanted was to pay respect to the part of me that’s likely gone forever, but dwelling on those memories encourages my denial of the acceptance of what is now.

I have heard that acceptance is a roadway that can lead to enduring happiness. If that’s the case can someone please get me the Book of Acceptance 101? Because every time I think I’m there I get a nice slap in the face. They say that part of the beauty of life is that it’s forever changing.

Well, I should have one up on that because I’m living with an unpredictable incurable disease. I have no choice but to go with the flow. If I don’t I just create more turbulence for my own self. And who needs that? I know it’s tempting to lean towards anger and frustration. But we help ourselves so much more if we don’t.

“We need to develop the habit of looking at whatever happens through a positive mindset, instead of a negative and defeatist one.” ~ Ana S.

Now to be honest, I’m still working on that one. I mean I’m not a pessimist, but that’s a tall mountain to climb. I also must reluctantly admit that things and people have come into my life since my diagnosis that otherwise would not have – a host of supportive others battling this very same thing. People who understand; first hand. Not exactly a reason to elect to have MS, but it’s what happens when you slowly seek out the positive in a not so positive situation.

The fact is I can no longer climb that monstrous flight of stairs, but there are still things that I can do. If I can just hold on to that frame of mind, life becomes more bearable for both my husband and me. After I dried my eyes, passed those darn stairs, and remembered my abilities, I discovered to my own surprise … a piece of peace. Who knew?

I guess I should again grudgingly thank my husband.
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Original article appeared on -The National MS Society Blog

19

Run Away

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“We don’t create a fantasy world to escape reality. We create it to be able to stay.” ~ Lynda Barry

I’ve been thinking.

I hate MS!

I know what you are saying. That’s pretty obvious. Who in their right-mind likes MS?

But you don’t understand. I mean I really hate MS. I hate writing about MS. I hate talking about MS. I hate every part of having MS. The hate is so strong it consumes me.

I use to just want to run away from everything and everyone. But now I know I just want to run away from my illness. Just breakout and leave MS behind.

But I can’t.

My friends always say they need a vacation to get away from their jobs, their kids, their spouses. I tell them to do it, just run away for a little while. Everyone needs a holiday from their problems and troubles.

Too bad I can’t take my own advice. It’s impossible for me to escape my problem. It goes with me everywhere I go. It’s a MonSter that lives inside of me. He makes my body tingle. I can feel him in my feet. Like a tyrant, he controls my hands and makes me drop things. He constantly laughs at me and my confusion makes him bold.

Some days are so bad; I begin to feel like a trapped animal. On those occasions, when I just want to crawl out of my MS cage and be free, I close my eyes and fall into my dreams. My dreams tend to rescue me from the beast. They keep me alive. I just bow my head, clear my mind, and run away.

24

Slower Pace

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“Most days it feels as if the world is whirling around me and I am standing still. In slow motion, I watch the colors blur; people and faces all become a massive wash.” ~ Sarah Kay

I’m not sure what’s going on but lately I have been feeling wobbly and fatigued. I seem to be slowing down and routine task are getting harder to accomplish. Everyday I’m using more and more energy just to get out of bed.

It’s frustrating because no matter how hard I try, I keep coming up short. It’s like I’m loosing control of my life.

The problem is, when I’m tired, I’m so very tired.

This issue is also starting to affect the way my mind works. I am having difficulty putting my thoughts into words. Because of this, I have decided it is time to adapt.

When MS made it harder for me to brush my teeth, I started using an electric toothbrush. When walking became more difficult for me, I began using a cane. So now I have to adapt to not being able to always express myself very quickly. I need more time to piece my ideas and thoughts together.

For 5 years, I have been posting blogs once a week on My New Normals and other websites. Because of my growing cognitive difficulties, I have decided to post bi-weekly or every two weeks. I hope everyone understands and stays active on our websites and various social media outlets.

I love writing and the reason I share my personal experiences with the world is to help demystify the disease of multiple sclerosis. It also makes me feel…well…relevant. I still believe I have a story to tell, so I will keep writing. Just at a slower pace.