Independence Archive

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?

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)

23

Wish Me Luck

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“Life is a crisis – so what!” — Malcolm Bradbury

Over the last few years, I have had bladder problems. Before now, it was simply an inconvenience. But lately it has gotten out of control.

Everything I have tried has failed. I’ve been on various medications. I wear Depends religiously. I’ve even tried self catheterization, with little success.

I am still aware of when I need to pee; I just cannot get to the toilet in a timely fashion anymore. And when trying to use the restroom, timely is the name of the game.

I’m just simply tired of “accidents”. So this week, in an outpatient procedure, I will receive a surgically implanted suprapubic catheter. My urologist tells me it’s common for patients with multiple sclerosis.

What do you think?

I’m not really clear how visible it will be or how often it will have to be changed. Basically, I have a lot of questions. I’ll be sure and write them down so I can get the answers during my consultation.

I just can’t wait to be happy and dry. Wish me luck.

31

A Friend Indeed

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“Alone, all alone
Nobody, but nobody
Can make it out here alone”
– Maya Angelou

Lately, I have been feeling down. Unfortunately this is nothing new. Two to three times a year I go into a “funk”. Not sure what it is but I really hate when it happens.

I mentioned this to my MS support group and after hearing about my troubles, a fellow MS group member, invited me to hangout with her for the weekend.

Sue, who has become a good friend and confidant, recommended we attend the New Orleans Oyster Festival. I agreed and we set a time and chose Sunday as the date.

Once the big day came, I was so excited. As soon as I woke up I began getting ready. As I was putting on my clothes, I could hear the patter of rain on my bedroom window. I looked outside and sure enough it was raining. I felt like crying. Then the phone rang. It was Sue. I just knew she was going to cancel. I answered the phone with a melancholy hello. She ecstatically answered back, “You ready?”

I said, “Sue, it’s raining.”

She replied, “If MS can’t stop us, how we gonna let a little rain stop us? Girl, put on a hat and let’s go!”

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So we met on the Riverwalk in the rain. We were able to find some shelter and settled in to eat our charbroiled oysters and shrimp po’boys. The sun even peaked out and gave us a thirty-minute reprise so we could see the bands play music and watch an oyster-eating contest.

On the way home, I just felt so happy. Yes, my issues were still present but for a little while I was able to escape the worry and tension that always accompany my problems.

It’s funny how friends and family can come through just when you think no one cares. Yes, a friend in need, is a friend indeed.

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