chronic illness Archive

8

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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11

The Devil Inside: Living with MS

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Part 1: Shaking the Devil

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” ~ Khalil Gibran

It can be hard to stay positive when so many negative things are happening around you. My cursed search for a meaning to the madness that is multiple sclerosis (MS) consumes my life.

Living with MS is a rollercoaster. Some days are up and some days are down. Happiness is here and then it’s gone, leaving a cloud of smoke behind. And just when I think I’m getting some relief and can finally breathe clearly, it strikes again.

It’s like the devil has found a home inside my body. Nipping at my faith. Growling. Constantly showing his teeth. Scarring my spirit. Marking my soul.

The power MS has over me is so strong, I start to believe I’m chained to it and there’s no escape. It feels so bad; I would trade anything for a cure. That’s when I can’t see beyond the fog of the disease and I wonder if the pain will ever let me go. Like nothing good will ever come again.

I hate how it affects me. It is mind-numbing the paranormal way it constantly tingles in my fingers, manipulates my thoughts, and destroys my confidence. I’ve cried so much, I feel like I’m drowning.

I just don’t comprehend what’s happening. If I keep getting weaker, what am I going to do? My mind says, “You can handle it,” but my body refuses to follow its lead. The worst part is, I’m beginning to sense there is nothing I can do about the progression. I listen to my doctors, but sometimes I feel stupid for taking all these different types of medicine. The side effects are draining. It’s like I’m killing myself as I try to kill MS.
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Part 2: An Isolated Nightmare

It’s the stuff of nightmares.

But thanks to time and loved ones, I’ve been able to craft a new normal. Be it with a limp, cane, wheelchair, or scooter, I’ve managed to face and live through it all.

Still, I never imagined it would get this bad.

In the midst of losing my physical abilities, I’m also afraid of losing myself. I’m scared MS will take away me. But my competitive nature refuses to let that happen. It’s become my goal to continue being me, in spite of MS.

One of the most aggravating things about MS 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 have major fatigue issues, and sometimes I get confused during basic conversations. My limitations cause me to feel cut off, especially when I’m surrounded by a group of able-bodied people.

It’s particularly hard at parties and gatherings. Normal interactions turn awkward or involve just a smile or a wave, but fail to develop into standard encounters. I’ll sit in the middle of a room and people will walk by me like I’m not even there. 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 a lack of understanding. When I tell people I have MS, they look at me like I’m a unicorn. It’s so misunderstood, most people shy away from spending time with me. They’re not sure how to treat me or what questions to ask.

To counteract the loneliness, I continually reach out to people who are on a similar path as me. When I do, I always seem to have a great time. I find myself talking for hours and usually making some new friends.

My family, friends, and other people with MS provide that much-needed support and companionship. I even use them when they are not present. When my feet go numb, I think of them. When my fingers don’t work, I think of them. When I try to walk and fall face first to the floor, I think of them.

Nothing else compares to the love of my family and friends. That love allows me to freely accept help and accommodations, ultimately giving me a better life.

Scared initially, I’ve now accepted my diagnosis and discovered how to incorporate MS into my life. I’ve learned to soldier ahead. Well, at least I try to. And as I look towards my future, I know there will be dark days, but I also can see the sunrise.

Despite the trials and tribulations, I choose to focus on the positives and leave the rest to faith. I can continue to harp on all the negatives or I can choose to be happy. I’d rather live my life no matter what obstacles come my way, have fun, and hope the universe hears my prayers while I try to stay positive about my life with MS.
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Original article appeared on Healthline.

16

A Vacation To Remember (Part 1)

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“The more you praise and celebrate your life, the more there is in life to celebrate.” ~ Oprah Winfrey

Who doesn’t love a vacation? I really like being on holiday and this one was going to be great. Why? Because I was going to see Oprah!

My husband, Tommy, wanted everything to be a surprise. He arranged our itinerary, so I only knew some basic details. We were going to Houston for 5 days to attend Oprah Winfrey’s “Life You Want” tour. It is a two-day empowerment gathering, highlighted by motivational and inspirational speakers and exercises. I was so excited because I could always use some extra motivation and inspiration in my life.

We arrived in Houston Thursday afternoon and I felt pretty good, just a little tired from the ride. The event was Friday and Saturday, so I had some time to rest up for the activities. We checked into the hotel, got some food and I went to sleep early.

Friday morning, I felt a little weak but that usually is the case for me most mornings. We got breakfast then walked to the first event. It was taking place outside and the Texas heat began beating me down. I could feel myself getting weaker by the moment. Just when I was about to give up, my first surprise happened. Two of my long time friends showed up. One resides in Houston and the other resides in Dallas. Then I found out it wasn’t a coincidence. They were going to give me a party the next day at my hotel. I couldn’t believe they would do that for me.

After an hour outside with my friends, I told Tommy I wanted to go back to the hotel room and rest up for the night events. I was so happy the next part of the experience would take place inside the Toyota Center Arena. Yes, it would be nice and cool.

On the walk back to the hotel, Tommy told me about my next surprise. He said, “Not only are you going to hear Oprah speak but you are actually going to meet her. “

Wait! What?

When he told me, I was almost speechless.

Once we got back to the room, I tried to rest but my mind was racing. After about 3 hours of being in bed and trying to relax, it was time to go. I was still feeling a little woozy after my rest but I was so excited I pushed through it. So off we went to the event. During the walk to the arena I was seeing double. It finally stopped when we got inside and I could feel the cool air on my face.

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We found our seats fairly quickly and 45 minutes later the event started. Oprah spoke for 2 straight hours and overall it was fantastic.

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At the end of the presentation, a lady I have never seen before approached me and said, “Mrs. Lemelle please stay in your seat.” Ten minutes later she escorted us through various back doors and elevators leading us into a skybox inside the Toyota Center.

She told us to wait and someone would be with us shortly. Two men in suits, wearing two way radio ear pieces, asked us to empty our pockets and leave my purse, cell phone and camera and we could get everything back after the reception. We were then brought into a room and I looked up and there she was. Oprah!

It was just my husband, a photographer, Oprah and myself in the room. And of course I forgot what I wanted to say to her.

I did tell her, I had MS.

She said, “That’s a tough diagnoses. How long have you had it?”

I replied, “I was diagnosed in 2000 “. She told me she would be portraying Richard Pryor’s grandmother in an upcoming bio picture and gave me some details on how she was thinking of playing the part. She said it called for her to use a lot of cuss words.

The photographer interrupted the conversation to announce he was ready. We all got into place, smiled and he snapped a picture. Oprah said goodbye and we were escorted back into the skybox over looking the arena.

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There were about 50 people in the room and Gayle King was greeting everyone. A woman walked up to us and handed me a copy of the picture we took with Oprah. She then told us to stay and enjoy the open bar and food.

Normally I would jump at free drinks and food but at this point I was on my last legs. I asked Tommy if we could leave and I could see the disappointment on his face. I assured him meeting Oprah was great and I just wanted to get back to the room so we could get an early start to day 2. We picked up our personal items on the way out and I was so happy to be heading back to the hotel.

After getting into the room, I took a shower and quickly got into bed. Three hours later I felt terrible. The room was spinning and I was confused. I asked Tommy to help me to the restroom. Then everything went black.

I really don’t recall much else. I just have glance accounts of what happened.

I remember someone shining a light in my eyes and asking me, “What’s your name?” “Where are you at?” “How old are you?”

I could hear them but I couldn’t answer back.

I remember seeing people walking around but my view was very faded. My eyes were going in and out of focus.

I kept saying, “I just need to go to sleep”. And hearing voices tell me, “No Nicole! Try not to go to sleep!”

That was it. I remember nothing else, until I woke up in an ER room lying in a blood stained bed.

A Vacation To Remember (Part 2)

 

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.

13

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

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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?

14

My Own Pace

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“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.