Acceptance Archive

9

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.

12

A Vacation To Remember (Part 2)

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“You’re going to go through tough times – that’s life. But I say, ‘Nothing happens to you, it happens for you.’ See the positive in negative events.” ~ Joel Osteen

I could feel something cold and wet underneath me. I didn’t have my glasses on, so I really couldn’t see. But I could smell blood. I haven’t worked as a nurse in years but I am still able to identify that stench.

My vision was blurry but the familiar sounds of heart monitor and blood pressure machines helped me realize I was in an ER. Luckily I remembered passing out so I wasn’t alarmed to be waking up in a hospital.

I could sense someone was in the room with me. Then I recognized it was a nurse. He told me his name and said the doctor would be right in to talk to me. I asked him what day and time it was; he said it was 6am Saturday morning. As the nurse changed my bloody sheets and bed pad, I asked if my husband, Tommy, could come in. He said there was no one in the waiting room but he would keep an eye out for him.

A doctor entered the room and introduced himself. He explained they really didn’t know what was wrong with me. My blood pressure had dropped dangerously low and I was bleeding in my catheter. I asked him when he thought I could be released? He said if everything went well, I could go home maybe by Sunday.

What! Sunday!

I am sure I sounded like a crazy person but all I could think to say was, “But I’m seeing Oprah today!” He laughed and said she would have to wait until I was doing better.

When the doctor and nurse left the room, I was all alone with my thoughts. I began to feel helpless. I didn’t have my phone, my purse, my ID, my glasses, and no one knew where my husband was.

But then suddenly, I began to think about all the things I learned and the inspirational people I met at the event only hours earlier. I thought about Amy Purdy who had both of her legs amputated below the knee. She became a Paralympics athlete and competed on Dancing With The Stars. She didn’t give up. She stayed strong. I told myself, “If she can do it so can I”.

And guess what? Thinking about her, made me feel better.

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A few minutes later, the nurse came back into the room and said my husband had arrived. I later found out Tommy had gone to the wrong hospital. EMS told him to drive and meet me at a hospital near our hotel but that hospital turned us away because of a shift change. So I was taken to a different hospital. Tommy drove to the original hospital and once he got there, the ER had no record of me being admitted. So from 3am to 6am, he was trying to locate me. Thank goodness he finally did. I was so happy to see him. He also remembered to bring my eye glasses and purse.

After talking to the doctor again, we sat in the ER for two more hours waiting for my circumstance to change. We were exhausted. Both of us had been up for more than 24 hours, not counting me passing out. The bleeding had stopped and my pressure was at a normal level. The doctor told us, I would be able to leave ASAP. I was discharged Saturday afternoon. All I could think was, “Oprah here I come!”

After signing my release papers and getting dressed, Tommy helped me to my feet. As soon as I stood up, everything went black. I passed out.

When I gained consciousness, the first thing I could see was Tommy signing my readmission papers. He then told me, I was going to be moved from the ER to an assigned bed in the hospital. Once I heard that, I knew my short hospital visit had turned into an indefinite stay. To make things worse, while waiting, the bleeding started again and I began feeling light headed.

Once transferred into a room, things were a little more comfortable. My Saturday and Sunday were filled with friends visiting all day. A couple even stayed overnight. By Monday, I was ready to be home. My bleeding had stopped and everyday after that I was told I would probably leave the next day. It was always something that prevented them from discharging me.

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Monday my blood pressure was too low. Tuesday my heart rate slowed down too much. Wednesday my blood count was off target and I was given 2 units in a transfusion. My release was also based on my ability to handle the six-hour drive from the Houston hospital to my home in New Orleans.

Finally Thursday, I was feeling great and everything seemed to be back to normal. They gave me one last check then I was given the all clear. We drove to New Orleans Thursday night and I was so tired after the ride.

I was in the hospital from Friday to Thursday and they still don’t know what was wrong with me. But overall, if I had a chance to do it again I would. Because the good that happened on this vacation outweighed the bad.

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.

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.

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?