MS Archive

15

Road Trip

road trip

“A vacation is what you take when you can no longer take what you’ve been taking.” ~ Earl Wilson

I’m going on vacation for two weeks. I do this once a year. Most times, I go somewhere close to home. But every once in a while, I fly to a place several hours away. My upcoming vacation will be different from both of those scenarios because this time I am taking a 6-hour road trip.

The difficulty with doing this is, my MS has always given me problems when I ride in cars. So I guess you are wondering, if that’s the case, why do it. Well, my biggest obstacles have been bladder issues due to frequent urination. Three months ago, I had a suprapubic catheter surgically implanted and I’m calling this car ride my first big test to see if it was worth getting.

During past road trips, we would stop every hour and a half so I could go to the restroom. We not only had to locate a restroom on the highway but, because of my wheelchair, it had to be an accessible restroom. Also, frequently getting in and out of the car would usually wipe me out before we even arrived at our destination. I’m hoping the catheter eliminates both problems.

So, I’m off for a couple of weeks and with any luck I will pass the test. I look forward to a fun, peaceful and MS free trip. I hope you find some time this year to relax too. We deserve it.

11

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.

16

Guilt Ridden

Love

“Negative emotions like loneliness, envy, and guilt have an important role to play in a happy life; they’re big, flashing signs that something needs to change.” – Gretchen Rubin

Physically, I’ve been feeling okay, but emotionally I’m ridden with guilt.

I’ve come to realize, the more I have trouble accomplishing task, the more it leaves my loved ones around me, picking up my slack. And that deficiency makes me feel guilty, grateful and sad all wrapped up in one.

When I’m tired, my husband literally has to dress me. He also has to feed me and help me use the restroom. To be honest, from time to time, I lower my head in shame when he’s helping me in public because it makes me feel like a dependent failure.

I know, I should be celebrating I have so much support in my life. But instead, I sometimes spend my whole day grieving over all the things MS has taken away from me. I just get caught up in dwelling on my old life and career. I get so engrossed with my problems; it causes me to dismiss other people’s issues as trivial as compared to mine. I’ve never been a fan of running from difficulties but the pain from MS sometimes has me wanting to hide away from the world. The disease consumes me and all the independence I have lost because of it, rings in my head.

So when I’m feeling sorry for myself, I sometimes forget how much my husband has to give up for me. He use to jog in the park but doesn’t do that anymore because I’m afraid to be left alone. That sucks for the both of us. Especially, since he always makes sure I make it to all my workouts and physical therapy.

The problem is, I don’t know how to show him how much I appreciate him. So, what can I do to express my immeasurable love and gratitude? I need ideas.

What are some small things you do to show your love?

14

My Own Pace

MadeStrong

“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.

26

Another Day, Another Drug

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“What can we take on trust in this uncertain life? Happiness, greatness, pride — nothing is secure, nothing keeps.” ~Euripides

I am changing my MS medicine after having a recent consultation with my medical team. (By the way, I only have one doctor but saying medical team makes me feel important.)

The last time I was in the hospital, the doctors executed an MRI. I am secondary progressive and my current neurologist has not ordered a routine MRI in a while. Personally, I think it’s because there are no drugs approve specifically for progressive patients. When my doctor received my results from my hospital visit, he quickly ordered another repeat MRI because he saw something abnormal.

I was worried and my fears came to fruition when he informed me I had enhanced lesions on my brain.

He suggested a medication change and gave me a few days to do some research and think about it. The most surprising thing I learned was the new maintenance medication he suggested is also used to treat certain types of cancer.

A couple of days later, I agreed to the treatment and set up my first infusion session.

DCIM100GOPRO

I reported to my local hospital’s infusion room and I was there from 8AM until 5:30 PM. Yes, 9 hours! The medicine is administered through IV infusion. Luckily, it is only once every 6 months. Besides being bored, everything went smooth.

Changing treatments is routinely done in multiple sclerosis. I know many people who have been on various drugs. This is especially true for those who have a more progressive form of MS. But I don’t know of many MS patients on this particular treatment. That worried me, but I still pressed forward. I just really hope this works because the whole changing medicine again thing has taken a lot out of me.

26

The Fall Girl

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“Pain is such an uncomfortable feeling that even a tiny amount of it is enough to ruin every enjoyment.” – Will Rogers

Saturday night, while taking a shower, I fell. The weird thing is, I was sitting down when it happened. I was on a bench in my shower washing myself when I lost my balance, tipped side ways and ended up face down on the tile floor.

The pain was incredible. I screamed and within seconds my husband rushed in to help me. He asked me if I was all right. I wasn’t sure so he sat me up and inspected me for damage.

I had cuts on the inside and outside of my bottom lip. And yes, blood was flowing and quickly filled my mouth. I felt a little lightheaded but the feeling was fleeting. As I sat on the floor, I ran my tongue around in my mouth. I could feel something was out of place. I glanced around the room and saw what looked like a tooth next to the sink. Before I could panic, my husband instructed me to smile. It revealed that I had chipped my front tooth.

As bad as that sounds, besides the pain, I felt reasonably well for such a severe fall.

Over the years, I have taken many precautions in my daily life to prevent falls. So I thought I was fairly safe. But wow, this took me by surprise. For goodness sake I was sitting down! Who falls while they are sitting?

I realize the busted lip and chipped tooth can be fixed. So I feel fortunate and grateful to be all right. But my memories of the pain from that fall will stay with me for some time.

NicoleTooth

11

Living On The Edge

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“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” ― Henry Wadsworth Longfellow

I feel as if I’m slipping into depression. I know the signs. Not only because I’m a nurse by profession but also because my own father has dealt with it the majority of his life. Over the years, he’s come a long way. Of course, if you ask my mother, she may have a different story to tell. She’s the one who has to live with him everyday.

So, I have been proactive about this slide down hill into that unforgiving black hole. I returned to my psychiatrist. I’m trying to avoid sleeping all day. And I started reading again.

What made me even realize I may be having a problem is my support group leader asked the question to everyone, “What do you do to improve your quality of life?” I personally had a list of answers, which included therapeutic horseback riding and visiting the local gym as often as possible. But these things don’t always work because when it’s raining there is no horse back riding. And here in Louisiana, it’s always raining. Plus, sometimes I just cannot make it to the gym because of other obligations or I’m just too tired.

And although I have my husband, I just get plain old lonely. It seems as if the lives of my friends are rolling along smoothly. While I’m stuck, stuck in the muck of multiple sclerosis. And it stinks.

I haven’t been doing the things that I usually enjoy. For example, it took a lot for me to even blog today. I spend a lot of time resenting those around me that are physically able-bodied. This is wrong, selfish, and unhealthy for me. And I know this. But that’s how my mind works when I’m living on the edge of depression.