Walking Archive

24

Slower Pace

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“Most days it feels as if the world is whirling around me and I am standing still. In slow motion, I watch the colors blur; people and faces all become a massive wash.” ~ Sarah Kay

I’m not sure what’s going on but lately I have been feeling wobbly and fatigued. I seem to be slowing down and routine task are getting harder to accomplish. Everyday I’m using more and more energy just to get out of bed.

It’s frustrating because no matter how hard I try, I keep coming up short. It’s like I’m loosing control of my life.

The problem is, when I’m tired, I’m so very tired.

This issue is also starting to affect the way my mind works. I am having difficulty putting my thoughts into words. Because of this, I have decided it is time to adapt.

When MS made it harder for me to brush my teeth, I started using an electric toothbrush. When walking became more difficult for me, I began using a cane. So now I have to adapt to not being able to always express myself very quickly. I need more time to piece my ideas and thoughts together.

For 5 years, I have been posting blogs once a week on My New Normals and other websites. Because of my growing cognitive difficulties, I have decided to post bi-weekly or every two weeks. I hope everyone understands and stays active on our websites and various social media outlets.

I love writing and the reason I share my personal experiences with the world is to help demystify the disease of multiple sclerosis. It also makes me feel…well…relevant. I still believe I have a story to tell, so I will keep writing. Just at a slower pace.

15

Moments of Clarity

When I reach for help someone is always there.

“Just when you think it can’t get any worse, it can. And just when you think it can’t get any better, it can.” ~ Nicholas Sparks

Everyday it seems MS puts me to the test then waits to see how fast I fall apart. This morning I woke up to both of my hands not working. I could not control them. I tried to make a fist and nothing happened. The only movements were some feathery sporadic involuntary twitches. No matter how hard I tried, I could not manipulate them to move. My hands felt like they were paralyzed.

It just seems so unfair. Just as I am beginning to accept my walking and energy limitations, my hands are starting to fail me. I was so frightened. My heart jumps around every time MS tries to work its black magic.

I felt like crying but didn’t because I realized, how in the hell do I wipe my face if my hands are immobile. So I stayed calm and waited. After about ten minutes, the dexterity in my hands returned and I was able to start my day.

Lately, whenever these types of events occur, I have decided to reclaim the moment by quietly bowing my head, clearing my mind and thinking positive thoughts. The days when MS is trying to control every part of my body and I have lost all hope, I close my eyes and fall into my dreams.

My dilemmas have never been solved by my newfound exploits but they do provide me with moments of clarity that allow me a chance to decide the best move to help ease the situation.

These moments have also helped me remember my adage. You have to fight your fears, contest your nightmares with love and faith, and live in the moment.

10

Standing Up To MS

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“Either I will find a way, or I will make one.” ~ Philip Sidney

I have been bound to my wheelchair for two years. I can no longer safely use a walker or cane. I am also not strong enough to “wall walk” anymore. Therefore, the chair has become an extension of my body, which I rely on 100% to provide me with mobility.

I realize using a wheelchair is not a horrible experience or the end of the world. It’s actually a really good thing. It enables me to get around and be more independent than I would be without it.

But I must admit, since I am always sitting, some days I just want to stand up for a little while. Just to give my backside some relief from the constant pressure. Usually, I only get to stand up when I am transferring to another chair or too lay down. But during a recent visit to my physical therapist, I was introduced to a walking sling.

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The sling helps lift me from a seated to a standing position. It provides upper body support and gives me enough freedom of movement to engage in exercises and physical therapy. When I first saw it, I didn’t believe it would actually help me. But it does. My core feels stronger.

When I’m in the sling, I can stand for 20 minutes. Hopefully, as I use it more, I can extend my time even further. I am usually so tired after my session I have to take a nap.

Multiple Sclerosis has taken away so many of my abilities. With the walking sling, I get a chance to stand up to MS. And in my own way, give the disease the finger.

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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.

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.

0

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.