Acceptance Archive

10

Disappearing Act

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“Our life always expresses the result of our dominant thoughts.” ~ Soren Kierkegaard

The aggravating thing about multiple sclerosis 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 get tired so fast, and going to the restroom is an adventure.

Sometimes I can feel so alone, especially when I’m surrounded by a group of able-bodied people. This is particularly hard at parties and gatherings. My limitations cause me to feel isolated. Normal conversations turn awkward and most people just smile and wave but fail to engage with me like a “typical” person. I’ll sit in the middle of the room and people will walk by me like I’m not even there. So, 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 the lack of understanding for what I am going through. It is so misunderstood that most people shy away from spending time with me. They’re not sure how to treat me or what questions to ask.

The good part is, I have experienced the total opposite reaction when I come in contact with people who are on a similar path as me. I always seem to have a great time. I find myself talking for hours and usually making some new friends.

Now if only I could figure out how to get the conversation going with the “able-bodied” people I run into.

14

My Own Pace

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“In three words I can sum up everything I’ve learned about life: it goes on.” – Robert Frost

My body seems to find a new disaster every week, so why should this instance be any different. I just know it’s going to be one of those days.

I’m weak. I’m tired. I’m frustrated.

It’s like the odds are stacked against me. My life is starting to feel like a game and I keep getting sent back to start.

The world can move very quickly. Because of that tempo, I find myself being absent-minded for more times than I would like to admit. I see everyone moving at the speed of light, while I’m slowing down. I get lost during basic conversations. My memory has begun to leave me. I’m not able to construct whole ideas. My thoughts are choppy images and concepts that I try to piece together. My reasoning is impracticable as I struggle to think of the words to use in simple everyday situations. I am constantly apologizing and asking people to please forgive me for my lack of attention to detail.

I’ve become detached from everything because my mind is focused on more pressing efforts. Like trying not to fall as I attempt to go into the next room or remembering why I was even going into that room.

Between texting, phone calls and the Internet, everyone I know is always “plugged in”. They are constantly moving. I’m starting to realize, I have to live at my own speed. I can’t keep up with everyone else nor should I have too.

Once I learn to give up what I want, for how it is, I will be in a much more satisfying position. Then I’ll be able to experience the sweetness, not just the bitterness of life. And that can only happen when I start living at my own pace.

34

Never Apologize

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“I felt sorry for myself because I had no shoes — until I met a man who had no feet.” ~ Jewish Proverbs

I’m Dying!

Or at least that’s what I feel like.

MS tends to put me in a fragile wavering psychotic state.

Between the optic neuritis, numbness, fatigue, dropping things, tripping and falling I think I may be losing my mind.

My dream for normal used to be so strong but now it is slowly withering away. Each passing day brings me less confidence that I can get my former life back. I always keep a little hope alive but that may be because I can’t face the reality that I will never get back to normal again.

MS just makes everything suck sometimes. Like when I can barely push my wheelchair two feet without getting tired. Sometimes I can only do two rotations before my arms begin to give out. I don’t think that hardly being able to move about is a good sign at all.

Despite that limitation, since my home is small, you would think that making it to the restroom would be easy even for someone who occasionally has trouble maneuvering around. But that’s not always the case.

On one of my particularly bad days, while trying to stand, my right leg decided to give out and make me better acquainted with the floor. I was trying to go to the restroom and ended up on the bathroom tile, only a few feet away from the toilet. To further humiliate myself, while face down on the floor, I could no longer stop myself from urinating. It began to trickle and I knew I had only seconds left before I was at the point of no return. I crawled and actually made it to the side of the toilet but that was about as far as my arms could pull me. Then my bladder could not hold it back any longer. Suddenly the urine broke free and it was a full-blown gusher.

I began to cry.

Yes, I was lying on the bathroom floor crying and peeing at the same time.

The worst part was that I could hear my husband, Tommy, coming into the front door. He was back from a 30-minute workout at the gym. He rarely leaves me at home alone for more than an hour. I knew he would be heading straight to the restroom to cleanup after his workout so I only had a few moments. I quickly tried to close the door by kicking it shut but my legs would not respond. Before I could think of a plan b he had turned the corner and was standing over me.

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The funny thing about Tommy is that he always appears so stoic.

He asked me, “Are you alright?”

Totally embarrassed, I shook my head yes and continued to softly cry.

He lifted me to my feet and walked me over to the toilet. I sat there while he helped me get my clothes off and then assisted me as I got into the bathtub. I ran the water and he got me towels. As I sat in the tub soaking he cleaned the urine off the floor. It was taking him a while as it had spread throughout the bathroom. I sat in the tub watching him. I started to think that he didn’t sign up for this. If I were only normal again this would have never happened.

I just kept saying, “I‘m sorry. I‘m sorry. I‘m sorry.”

From his hands and knees while crouching in urine, he looked at me and said, “Don’t ever apologize for having MS.”
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This article was first published by MultipleSclerosis.net.

15

Beat The Heat

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“What dreadful hot weather we have! It keeps me in a continual state of inelegance”. ~ Jane Austen

It is incredibly hot this summer. I hear people complaining about it all the time. Nevertheless, they all still seem to be able to go about doing their daily task. For them, it’s basically an annoyance or at the most, it presents some discomfort. For me, it has way more damaging effects. As soon as the sun’s rays hit me, it sucks every ounce of energy right out of my body.

At first, I thought heat affected everyone with MS in the same negative way. But I see news stories of people with multiple sclerosis running marathons and participating in bike events. I find that incredible! I can barely go outside for 10 minutes without wilting in the sun.

How are they doing that? Am I in the minority?

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I have a cooling vest that is 5 years old. It helps, but not for very long. My friend, Dave Bexfield from ActiveMSers, suggested I get a new one. Cooling vest technology has improved over the years and there are a larger variety of styles available as compared to the recent past. He recommended a couple and I chose the one that best met my needs.

That was great advice because using my new cooling vest has really worked for me. Besides just staying in the house, it’s pretty much the only way I can think of to beat the heat.

So, I need some help. What’s the secret?

How do you deal with the heat?

24

Sunshine And Rainbows

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“But better to get hurt by the truth than comforted with a lie.” ― Khaled Hosseini

Yesterday, after a doctor’s appointment, I got in my car and the radio was playing “Happy” by Pharrell Williams. I really like that song. Hearing it makes me feel so good.

The next song to play was “Rolling In The Deep” by Adele. I’m married but I can still relate to its “lost love” inference.

The melancholy message of “Rolling In The Deep” is totally opposite from the “Happy” song. Nevertheless, I love them both.

I see my blog as comparable to that radio station’s sequential music programming. Consequently, sometimes it’s happy and sometimes it’s sad.

Recently, I received a few comments and emails asking me why my posts are so negative. For those people that asked, I’ve decided to answer them here.

I didn’t realize so many of my posts were perceived as negative. I went back and looked and from my count most aren’t negative. They just reflect my life. I write about my journey living with MS. In doing so, I chronicle my experiences and feelings. And just like that radio station’s playlist, sometimes I’m up and sometimes I’m down.

Unfortunately, my life is not a Hallmark card. It’s not always sunshine and rainbows. If I pretended it was, this blog would be full of lies. I promised myself that my writings will only tell the truth and sometimes that truth is ugly. So if I can’t always see the bright side of living with a chronic debilitating disease, please forgive me.

I am just like everyone else, I have my good days and I have my bad days. And I’m happy to say that my good days out number my bad.

16

Living Cliché

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“We have to dare to be ourselves, however frightening or strange that
self may prove to be.”
– Mary Sarton

I wish I had a boring life.
I would be a mom with two kids and a stay at home wife.

I’d watch TV half the day.
Then shop the other time away.

I’d have lunch with friends.
Then, the next day, meet them again.

Go dancing on weekends and stay up late.
Every night, dinner with my husband is a usual date.

No medicine to ingest. No shots to inject.
I can go all day, no need for rest.

No doctors to see. No nurses around.
I’m always happy, you never see me frown.

I wouldn’t have to explain why I’m in a wheelchair, because there would be none there.

I would go to the movies and watch it from beginning to end.
I would run at the park with all my old and new friends.

I would sleep all day by choice.
And when I spoke, everyone would respect my voice.

No more smiling out of fear.
I’m the best at everything, the envy of all my peers.

My husband would be my husband, not my caretaker or nurse.
I would love that the most, because that part hurts the worst.

Am I wrong for wanting to be like everyone else?
I’m sad that I feel this way, but I really wish my life were a cliché.

19

Pure Magic

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“Hope is a good thing, maybe the best thing, and no good thing ever dies.” – Stephen King – The Shawshank Redemption

I am trying to live beyond MS. It has produced so many obstacles in my life that I can’t see anything but the negativity that arises from its poisonous grasp. The disease comes with countless constraints that induce me into becoming a prisoner to its daily whims.

It stunts desires, kills cravings and destroys aspirations. Sometimes it feels as if it’s choking the life right out of me. Even thinking of it now leaves me breathless.

MS hurts. If you let it, the pain of the disease can pull you down further than hell. Lower than you can ever imagine. The whole magnificent emptiness that is MS, wants to control your life and destroy any semblance of happiness.

In my fight to remain in control my main refuge has been hope. Hope is the only thing that keeps me sane. Hope brings me clarity. It sometimes takes me away from MS. It allows me to focus on a particular instant of MS free happiness. And those moments, when I forget I have MS, are nothing short of magic.

Pure magic.