Independence Archive

15

Road Trip

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“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.

16

Guilt Ridden

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“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?

35

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?

10

The Power Of The Chair

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“Never worry about numbers. Help one person at a time, and always start with the person nearest you.” ~Mother Teresa

I own two power chairs. One is portable and the other is heavy-duty. Due to limited space in my home, the heavy-duty chair has been stored at my parent’s house. I never use it and it just sits in their dining room taking up space. My parents didn’t mind it staying there, but it bothered me. So last week I decided it has been at my parent’s house long enough and it was time to sell it.

So, what did I do? I took some pictures of it and tried to sale it on Facebook. I thought it was a good idea, but apparently…no one else did. Not one call.

Plan B was to give it away. I wish I had done that from the start.

I connected with my local MS Society and they gave me some leads of people who were in need. After a few days, I was able to connect with a fellow MSer who needed a power chair.

I recruited my dad to handle the specifics and the actual transfer of the chair. He’s good with that kind of stuff.

The man resides roughly two hours from my parent’s home, but was happy to make the trip. He was so appreciative.

Who knew how rewarding helping someone would be.

22

It Was A Success

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“Persistence and resilience only come from having been given the chance to work though difficult problems.” – Gever Tulley

I recently received a suprapubic catheter. The surgery was completed with no problems or complications. The main reason I had surgery was I no longer held complete control over my bladder function and the catheter will help me regain that control.

It was an outpatient procedure that lasted an hour and a half. My urologist and his team made me feel so comfortable during the preoperative instructions and evaluation that I urged my mother to stay home. My husband was there and that was enough support.

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Despite my comfort level with my doctors and the surgery, I still had the normal pre-surgical jitters.

So to ease my doubts, I persistently played in my head the reasons why I was getting the procedure done. I remembered the sleepless nights. We were waking up every three hours to use the restroom. I vividly recalled the times I returned home from a night out wearing wet soggy Depends. I called to mind dozens of ruined outings due to a weak bladder and the endless anxiety about the “restroom situation” every place I went.

I used all of these memories as my motivation to continue with the surgery.

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Now the big question is…

So, was it worth it?

The answer is…

An overwhelming YES! I would do it again tomorrow.

It’s been less than a week but so far so good. And as we all know, there is a learning curve with everything. So as I learn, I will let you know. But for now it seems to have worked out.

It was a success.

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13

Therapeutic Horseback Riding

I am back at the farm for another season of therapeutic horseback riding.

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I ride until August, then we take a couple of months off because of the heat.

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It cost $25 and I go once a week.

I really love it and recommend it to everyone.

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Meeting my new horse. (Video)