MS Archive

21

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.

16

Hope Killer

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“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.” ~ Thich Nhat Hanh

Last week, while at physical therapy, I fainted and was unresponsive. As a result, my therapist called 911.

When I regained consciousness, two EMS paramedics were standing over me checking my pulse. After a quick analysis, they found my blood pressure had dropped low enough for them to insist I be taken to a nearby hospital.

So off I went, flashing lights and sirens blasting, for the second time in two months. My husband, who by now is a professional at this, followed behind the ambulance in our car.

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Once I got to the hospital, the staff ran an array of test on me. After four hours of observation, all of my vital signs were back to normal but they still had no idea why I fell unconscious.

The doctors came into the room and told me I could go home and suggested I follow up their exams with a visit to my primary doctor. They concluded, the incident was do to multiple sclerosis.

I was told, “You are going to be discharged, because there is nothing more we can do for you”.

When I heard his declaration, it cut through me like a knife. I never knew words from a stranger could hurt so much. It was so strong and powerful; a deep wound was put on my hope of ever getting better.

14

The Blessings

That’s me in church looking for answers.

“Believe that life is worth living and your belief will help create the fact.” ~ William James

For years I have been randomly saying prayers. The process brings me clarity and seems to slow everything down when life gives me more than I can handle. But lately, I pretty much have given up on performing the ritual of kneeling while praying. It just takes up too much of my energy and nine times out of ten I need assistance to kneel down and get back up. The same goes with praying while standing. I can stand, with help, for about 30 seconds without swaying but that’s about it. Then after all that standing I require ten minutes of rest. I needed another option.

My alternative to kneeling and standing is to sit quietly and bow my head. I can do it in my wheelchair or on the ground in the park.

Also, instead of designated times, I say prayers whenever I have a free moment. It can be at anytime, like when waiting in a line or riding in the car. I just close my eyes and say a little prayer.

Unfortunately, in recent years, most of my prayers have been purely selfish. I ask for the same thing every time. I just want to be “normal”.

After praying that same prayer nearly everyday, I began to think my efforts were in vain. Now I believe I was missing the lesson.

Every time I wake up and feel great for five minutes, that’s my blessing. When I am able to make it to the bathroom without help, that’s the blessing.

The small victories are my blessings. A “normal” person doesn’t see a blessing in being able to walk alone to get the mail or putting on clothes without help. I now see how special life is and recognize the miracles we perform and take for granted everyday.

I just want to say thank you for the blessings and allowing me to notice them.

13

Reaching Goals

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“If I thought about it, I could be bitter, but I don’t feel like being bitter. Being bitter makes you immobile, and there’s too much that I still want to do.” ~ Richard Pryor

Life is a habitual attempt to achieve goals. Reaching, with arms out in front of us, trying to grasp our greatest moments we believe have yet to come. It’s a grand pursuit we all have in common. But in that constant chase, the difference between most people and myself is the fear my main successes in life are behind me. I worry my best days are now only realized through reminiscing.

Once MS took over my body, I re-entered the world as a different person. I have a pain no one sees, my confidence is tested everyday and I have to accept I can’t do all the things I use to do. The hardest part is learning to live with my new normals. I need to not fight it so much; instead I have to learn to accomplish things within my limitations.

I still have goals I want to reach. Just on a smaller scale. Like in the past, I had ambitions to jog at the park three times a week. These days I can no longer run. So instead of running, my new goal is to ride my scooter around the track twice a month.

I must remember I don’t possess my future. No one does. Reminiscing can be fun but when you play the past over and over in your head, it becomes impossible to concentrate on happily living in the now. My new objective is to focus on what’s happening at this instant. Living in the moment. And no matter what, I have to keep trying to achieve goals.

10

Standing Up To MS

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“Either I will find a way, or I will make one.” ~ Philip Sidney

I have been bound to my wheelchair for two years. I can no longer safely use a walker or cane. I am also not strong enough to “wall walk” anymore. Therefore, the chair has become an extension of my body, which I rely on 100% to provide me with mobility.

I realize using a wheelchair is not a horrible experience or the end of the world. It’s actually a really good thing. It enables me to get around and be more independent than I would be without it.

But I must admit, since I am always sitting, some days I just want to stand up for a little while. Just to give my backside some relief from the constant pressure. Usually, I only get to stand up when I am transferring to another chair or too lay down. But during a recent visit to my physical therapist, I was introduced to a walking sling.

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The sling helps lift me from a seated to a standing position. It provides upper body support and gives me enough freedom of movement to engage in exercises and physical therapy. When I first saw it, I didn’t believe it would actually help me. But it does. My core feels stronger.

When I’m in the sling, I can stand for 20 minutes. Hopefully, as I use it more, I can extend my time even further. I am usually so tired after my session I have to take a nap.

Multiple Sclerosis has taken away so many of my abilities. With the walking sling, I get a chance to stand up to MS. And in my own way, give the disease the finger.

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