Walking Archive

31

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.

27

Mourn The Loss

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While grief is fresh, every attempt to divert only irritates. You must wait till it be digested, and then amusement will dissipate the remains of it. ~Samuel Johnson

It’s a good thing that my caregiver/husband and I get along, because I never would’ve imagined depending on him so much.

In the beginning of this newfound dependency on others, I was not a happy camper. I probably was defensive to the very people that were trying to help me. It’s just that we all have this picture of what life should look like and my reality just was not matching up.

Nowadays it seems I need help with just about everything. And to make matters worse or more complicated for all involved, I don’t need that help all the time. This confuses the person, normally my husband, as to when to help and when not to help.

Does that make sense?

I know he is only concerned about me. In the meantime, I’m so busy trying to hang on to my last bit of independence by continuing to do what I can on my own. I think this is a good thing.

I also have to accept there are things I can no longer do safely by myself. For instance, I need help getting on and off the toilet. It’s not every time I go, mostly just during the night or early in the morning. The other day, I had a nasty fall in the bathroom and it scared the life right out of me. Mind you my bathroom was newly made handicapped accessible. So, it seems no matter what, falls can happen.

I need help with transferring from one chair to another. That is, transfers from my scooter or wheelchair to the dining room table or to my favorite reading chair. Something I used to do with no problem.

I’ll be honest with you. It’s hard. To make it easier I quickly mourn the loss then I move on. The thing is, if I persist on focusing on what I’ve lost here, I will lose and MS will win once again. And it has taken away so much from me already.

I try to remember that our job as MS fighters is to make the most out of what we can do, no matter how small.

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Working Out With Multiple Sclerosis

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Content provided by: Black Health Matters

Though it might seem like exercising when you have multiple sclerosis (MS) is an oxymoron, even a small amount of physical activity can provide great benefits. In addition to being essential to overall well-being, exercise may even ease symptoms, and it could help you stay mobile longer than if you are inactive. Talk to your doctor or physical therapist before starting an exercise program because your workouts should be determined by your fitness level. If you don’t have balance problems and you’re able to ride a bike or run, you should. Here are options if you can’t hit the pavement:

Stretching. MS patients tend to lose range in motion in their limbs as muscles freeze. Stretching your arms and legs every day will help keep them moving.

Yoga. Downward facing dog and the lotus position help relax muscles and keep them flexible. Yoga is also good for maintaining balance. Tai chi’s slow, deliberate movements are another excellent choice for building muscle tone and increasing flexibility. Choose classes for people with disabilities.

Water exercises. Swimming and water aerobics are particularly good for MS patients, especially if your disease is causing increased sensitivity to temperature. And some movements that you’re unable to do out of water are possible in water, where your body is weightless.

Stationary bike. Can’t ride in the next BikeMS event? You can make use of a stationary bike. One study showed stationary bike participants reported improvement in their fatigue symptoms.
Resistance bands. Use resistance bands to duplicate exercises normally performed with barbells. Bands can also be used to assist with stretching.

Though multiple sclerosis may mean a change in physical activity and mobility, it doesn’t mean your life has to stall. If you can no longer continue activities you used to enjoy, talk to your doctor about new ways to stay active or about ways to make your old favorite activities more accessible.

Content provided by: Black Health Matters

84

Clinging To Sanity

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I’m not clear what happened differently this week. I don’t have any new symptoms. Everything I can’t do, I haven’t been able to do in years at this point. My husband is still doing a good job taking care of me. We have not even been arguing. I’ve been seeing my same psychiatrist and I’ve really been doing my part to cling to my sanity.

But yesterday, I completely lost it. I cried endlessly all day long! I hate crying. I especially hate doing it in front of my husband. Because, I know there’s really nothing he can do and men always want to “fix” the problem. The thing is I don’t think there is a way to fix me.

Since nothing has changed, I am fiddling with the idea of increasing my depression medication. You know depression is really a side effect of multiple sclerosis. But of course it would be.

It’s so bad that I actually left a recent MS self-help meeting feeling worse, because I was the most disable one there. Meaning, although they all had valid complaints, at least they could get up and walk out. I had the nerve to judge them and that made me feel horrible.

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It seems as if once again I’m assuming that if you can walk you must be happy. From down here in my wheelchair it seems that has to be true. Right?

So I’m going to see my psychiatrist next week. Hopefully, it will be as simple as him writing a new prescription.

Hopefully.

36

Small Victories

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Some mornings I wake up and I just can’t do it. I don’t want to battle MS anymore. But somehow I muster up the strength to fight the good fight and begin my day.

I have tremors in my hands, which makes using them exceedingly difficult. At times I’m unable to hold a fork or spoon and transferring myself in and out of my power chair is becoming more challenging due to my lack of strength and mobility in my arms and legs. Most nights I feel like someone borrowed my legs and ran a marathon.

Lately my body aches wake me up before the rest of me wants to be awake. Then I spend the rest of the day exhausted and wanting to just climb back into bed.

I can remember when I was so active. I did so many things. What happened to me? Why has MS consumed so much of my life?

It is so frustrating to have such a hard time even taking a few steps without using a walker or the wall. I feel like a wax dummy fighting a fire that is MS.

The other day after taking a nap I woke up and steadied myself to go to the restroom but my legs didn’t follow. I quickly fell straight to the floor. I gathered myself and began to crawl to my wheelchair. It took me about five minutes to situate myself in my chair and make it to the restroom. But I did it and I was so happy.

Believe it or not, nowadays I consider that a victory because no one saw me crawling on the floor and I was able to hold my business until I made it to the restroom.

I guess when life hands you hard times any positive moment, no matter how small, is welcomed. Even the small victories can be huge.

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38

Aisle Chair

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I was excited from the very moment I was asked to speak on a panel of WEGO Health activists. The other panelists represented cancer, diabetes, and organ transplant patients; I of course represented multiple sclerosis. The conference was to be held in Boston. That’s a seven-hour flight and one layover from my home in New Orleans, Louisiana. This in itself did not pose a problem for me. I’ve traveled by airplane multiple times in the past. I see disabled individuals in the airport all the time.

But this time was different.

Tommy, my husband, wheeled me to the gate. Then both the airline representative and Tommy escorted me down the jet way to the airplane. In the past, I would then stand and wobble to my seat. This time it was deemed necessary for me to use what they call an aisle chair. I could no longer even wobble to my seat!

The aisle chair fits between the rows of the airplane. Can you imagine being wheeled between the two rows of seats? I was worried if I could even fit. They strapped me up like Hannibal Lecter. I had to ride with my arms crossed to ensure I passed. The plane wasn’t even empty as I missed pre-boarding thanks to bladder issues! I was forced to ignore all embarrassment issues. Once I made it to my seat. I was sad of course. I let a silent tear fall. Then pushed my seat back, closed my eyes, and relaxed. After all, what else could I do?

It was very humbling to say the least. It confirmed my disease had progressed. But it cemented that I could handle it.

I continued to move forward anyway and instead of saying my planned speech at the event I told this aisle chair story, which gave the conference attendees a glimpse at how it is to live with MS.

Have you ever seen an aisle chair?

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More WEGO Health 2013 Socialpalooza pics.

30

Envy Ball

poison envy

Thanks to multiple sclerosis, I use a wheelchair because I can’t really walk. I can’t work outside of the home. I can’t drive and I have the stamina of someone much, much older.

Over the years I have dealt with all of this. All of the things I used to define myself by are now unavailable to me. This has been the case for a while now and I’m learning to accept it.

But I have to confess, it really pisses me off when I see others doing all the things that I can no longer do!

I have to warn you that this is a dangerous and unhealthy place to stay. It’s like being rolled up in a ball of envy. I know that’s no place to go. So in my attempt to acknowledge the feelings thereby somehow letting them go I focus on the things that I can do and the wonderful helpful people I have surrounded myself with.

But it’s so hard. The dark side of me is ever so close.

I try to remember that I’m worth the effort it takes to ward off negativity. That underneath this pile of mess there lies a human being that is Nicole. The soul of who I am is alive and intact. Okay maybe a little bruised up, but I’m still moving on.

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I don’t recommend this but I’ll just carry my little ball of envy and anger around with me until it gets too heavy.

It seems for now living in this world of the able-bodied, it’s all I can do.