chronic illness Archive

19

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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10

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

18

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.

15

Moments of Clarity

When I reach for help someone is always there.

“Just when you think it can’t get any worse, it can. And just when you think it can’t get any better, it can.” ~ Nicholas Sparks

Everyday it seems MS puts me to the test then waits to see how fast I fall apart. This morning I woke up to both of my hands not working. I could not control them. I tried to make a fist and nothing happened. The only movements were some feathery sporadic involuntary twitches. No matter how hard I tried, I could not manipulate them to move. My hands felt like they were paralyzed.

It just seems so unfair. Just as I am beginning to accept my walking and energy limitations, my hands are starting to fail me. I was so frightened. My heart jumps around every time MS tries to work its black magic.

I felt like crying but didn’t because I realized, how in the hell do I wipe my face if my hands are immobile. So I stayed calm and waited. After about ten minutes, the dexterity in my hands returned and I was able to start my day.

Lately, whenever these types of events occur, I have decided to reclaim the moment by quietly bowing my head, clearing my mind and thinking positive thoughts. The days when MS is trying to control every part of my body and I have lost all hope, I close my eyes and fall into my dreams.

My dilemmas have never been solved by my newfound exploits but they do provide me with moments of clarity that allow me a chance to decide the best move to help ease the situation.

These moments have also helped me remember my adage. You have to fight your fears, contest your nightmares with love and faith, and live in the moment.

13

Savior Of Hope

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“Try to be a rainbow in someone’s cloud.” ~ Maya Angelou

During a recent emergency room visit, a battery of test produced no results to why I fainted. The doctors concluded, the event was due to multiple sclerosis and I was released from the hospital.

On the drive home my husband was talking to me but I barely noticed what he was saying. All I could think about was the emergency room doctor’s words, “You are going to be discharged, because there is nothing more we can do for you”.

While my husband navigated through traffic, I sat on the passenger side of the car watching people walk by. I began to tear up. I just kept wishing I had their lives. They looked so happy. Some were laughing and having fun, while others were busy shopping. Not a care in the world. But most importantly, they all looked so healthy.

“There is nothing we can do for you”, is the definition of a chronic debilitating disease. But when I heard it live, out-loud and directed at me, the reality of it crushed my spirit. And the circumstance put me in the mist of one of the saddest moments I have ever experienced.

As we continued home, I hopelessly gazed out the car window at all the happiness around me. It was like being haunted by ghost from my past. Watching a poignant reminder of better times. My veins ran red hot from my fear I would never achieve such joy again. I was trying to smile but something inside kept the pain running through my body, depressing every part of me. Sending hollow thoughts throughout my head. My hopes had been shattered and I felt trapped by my situation.

When we approached a red traffic light, 4 blocks from my home, I made eye contact with a woman. She was sitting in a wheelchair parked on the sidewalk, clutching three grocery bags filled with clothes. The lady was visibly dirty and appeared homeless or at least in dire straits from the way her hair was matted to her head and how she was dressed.

We stared at each other for the entire light cycle. Right before it was time to accelerate through the intersection, she must have noticed the sadness on my face and gave me a big smile and a brief wave.

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That simple act of kindness, felt like a whisper in my ear saying, “Everything is going to be ok.”

In return, just as the light turned green, I quickly smiled back at her. Then we zipped away. Over the next 5 minutes, I continued to think about the woman. I began to feel so ashamed of myself for having a personal pity party.

I can’t believe, despite her own trials, she was still able to recognize my pain and offer me some compassion.

Once we got home, I felt so bad, I told my husband to bring me back to the spot where I had seen the woman. But by the time we returned, she was gone.

I’m not sure what I would have done if she had still been there but something was drawing me back. I think I would have at least said thank you for being so nice or offered her something she may have needed.

Throughout our lives, we give and receive help and never know where it will come from or when it will be needed. I guess this was my turn for someone to help me and I am so glad she did. She renewed my belief in faith, hope and happiness.