Sadness Archive

31

MS Milestones

broken computer

Today is different. I’ve been having increasing difficulty typing. I previously promised myself that if this ever happened I would use assistive devices available to me. That is, no matter how humbling it may be. Because like it or not I’m not the same woman I used to be!

Now, today is different because I’m using dictation software in order to complete this post.

I guess you can say it’s a milestone of sorts. In fact over the course of the last few years every time I had to start using a new device I considered it a very big deal. Whether it’s my cane, walker, wheelchair, scooter or power chair, I had to accept my new reality. Or as we say every year it seems to be something, and here once again is one of my new normals. To be honest though, I saw this one coming. More often when I’m tired, I’m require help to do normal, easy, simple tasks; for example buttoning my shirts or putting on my own deodorant or sometimes even feeding myself! Thank God for my husband and my mom.

Fortunately, with this computer program I simply speak into the microphone on the computer and it in turn types what I say. I really, really didn’t want to use it or anything else. It was hard to accept any kind of help at first. But, I figured in order to keep with what I preach… I had to. Writing has become my outlet from MS. I’ll be damned if I let multiple sclerosis shrewdly yank that away from me too.

MS Sucks

At first for me, like many others, multiple sclerosis meant only blurry vision. But look at me now. I imagine I’m going to accept my new typing limitation and move on to embrace this dictation software on my computer. I may even be drawn to purchase brand name fancy software. Who knows?

I’m even having problems using my computer mouse. My hands just will not listen to me. I did however read about a device that moves your mouse with your eye movement.

Maybe in a few months I’ll be ready to tackle that one.

32

Twists and Turns

A long road

My dad, who had a stroke a couple of months ago, shared a card with me that at the time we both could relate to. It said, “Do not worry that you’re not strong enough to make it before you begin. It’s in the journey that God makes you strong”.

The card also reminded me of a fellow MSer I met in passing. The encounter was a long time ago when I was still walking on my own. She was admiring how much physical ability I possessed. Then she lowered her head and confided in me, “Nicole, I can’t even lift myself off the toilet.” I subsequently squeezed her hand, offered a genuine show of support then we exchanged contact info and departed.

Now, years later, as I sit in my scooter I’m probably closer to her than she will ever know. I no longer have her info so I can’t reach out. Besides, what am I going to say? “Hey I can’t lift myself off the toilet anymore either!”

I am always in the toilet

I would’ve never thought I’d be here today. It’s been a long journey, but Tom (my husband) and I have made it through. He hears me racing to the restroom and just meets me there. He saves me from actually having to ask for help. It’s a very humbling experience. Actually, it’s mostly in the mornings that I’m the weakest.

How does one prepare themselves for this?

This journey has made me into a different woman. I’m weaker yet stronger in more ways than one. Somehow my dad, Tom, and I are making it through despite all the wired twists and turns…but certainly not on our own.

76

Sad Not Crazy

insane straight jacket

Can I be sad?

Whenever my friends are sad about something everyone around them seems to understand. People tell them, “A good cry will do you good”. Well, when I cry people say, “Maybe you should see somebody about your depression.”

Depression?

What depression?

I’m not depressed!

I’m just sad that my legs aren’t working today. I’m upset that I just slept 10 hours and I’m still too tired to get out of bed. I’m mad that I can’t enjoy a movie at the theater because I have to go to the restroom five times in an hour. That’s not depression that’s a legitimate reason to be disturbed.

Don’t get me wrong, I am all for incorporating psychological therapy into the treatment of a disease. I have in the past used a social worker and a psychotherapist to help me deal with my illness. But that doesn’t mean I’m not a stable person who can’t handle adversity on my own. On the contrary, I believe people who suffer with a chronic debilitating disease are stronger than most. Not because we are born stronger than everyone else but because we have to be stronger in order to live a somewhat “normal” life.

Its Okay To Be Sad

When I cry everyone seems to be worried that I am going to hurt myself. I understand the concern but please step into my shoes. Since being diagnosed I have lost and regained my vision, spent 3 weeks in rehab after an exacerbation and lost my ability to safely walk alone. Now ask yourself would any of these events make you cry?

I just want the same consideration.

So please my friends, just like everyone else, can I also have a “good” cry?

48

Unbearable Guilt

Fatigue is my worst enemy.

The “Big Game” better known as Super Bowl XLVII, was played in my home town of New Orleans. Specifically held in the Mercedes-Benz Louisiana Superdome. A fun event right? Well, it was supposed to be.

Tommy, my husband, thought so and was understandably pretty into the entire affair. It was only one game but the NFL (National Football League) had drawn it out to a week-long Sunday to Sunday party. I mean Tommy had planned out a pre-game itinerary of events for us. We had free tickets for a number of things. He’d even ensured they were handicap accessible. The other day he  got us in the audience of The Craig Ferguson Show that was being tapped in New Orleans. What a rush! It came on right after the game so I hope you saw us

The Super Bowl, in case you didn’t know, happens once a year and the two best teams in the United States are groomed to play one incredible game of NFL football. This year it was the San Francisco 49ers against the Baltimore Ravens. At this point the game has been played and won by the Ravens.

The problem we had was I ended up causing us to miss out on a few functions. I slept through events. I complained about the cold temperatures and early morning shows. I was tired the majority of the time. This MS (multiple sclerosis) body can only take so much. The fatigue wins every time. I have limits. I’m use to this. I just hated to disappoint Tommy.

I know he understands, but the guilt is almost unbearable!

This was on a good day.

97

Why I Cry

Why I Cry

I feel like crying all day. I’ve been at it for 2 hours, so I’m well on my way. My husband says I’ve been acting differently. I guess he should know because he understands me better than anyone else and that sometimes includes myself. Once again he is right. I am acting different. But, it’s not because of something he did. It’s because I am different. I am a different person. Perhaps he’s thinking of the old me. We both must miss the old me. But no one misses her more than me.

That’s why I cry.

Right now I don’t know who I am. I know who I was. But I can’t find that person. Sure there’s pieces of the old me here and there but the package has changed. The person I see now is a stranger. That’s not me in the mirror. I’m not like that. That person looks older than me. That person looks broken. That person needs help.

I’m independent. I’m strong. I’m authoritative. The person I see in the mirror is none of that. No one listens to her. No one takes her seriously. When she talks she stumbles on her words and her speech is slurred. When she is amongst strangers you can feel the pity in the air and see it in their eyes as they speak to her. But how can you blame them because when I look at her I pity her too.

NICLEM_0057

I know I should embrace her but it’s hard. Every picture, every memory, every conversation about the old days leaves me longing for my past self. I guess I have to get to know her. So as I sit here looking at her in the mirror she cries for me.

She cries with me.

And even though I’m trying to accept her I still wish she would just go away and bring the old me back. But until then I will recognize her as me and hope everyone else will as well.

As we cry together.

30

Happy Land

After I got off the cruise ship from my recent vacation and stepped back into my real world, a certain familiar mundane mood came over me. In the past when I would feel slightly depressed, I’d picked up a self-help book and attempt to “fix” myself. I guess this time I got a case of cruise lag because I started reading “The Happiness Advantage” by Shawn Achor.

I still openly lament the fact that I can’t safely walk alone, cook on a stove and I miss I the independence I use to take for granted. Okay, that’s enough of that; I think you get my point.

To be honest, I believe that if all these things were somehow given back to me, I would automatically be happy. It’s similar to the way one may believe that happiness will come when they lose weight or get that big job or promotion. But the thing is when we do get it we are happy for awhile then the bar gets raised and suddenly there’s something else a little farther off into the distance we need to be happy again. It’s like a never-ending journey to “Happy Land”.

This book has presented to me an entirely new concept. I’m only on page 80 of 210 but this is what I got so far. It basically shows us how to leverage the power of positive thinking in our lives. It says that we must be happy first where we are and then you can be more motivated and productive. In other words, happiness precedes important outcomes and indicators of thriving. The most interesting thing to me is that our external circumstances predict only 10 percent of our happiness. It’s teaching me to constantly scan my life looking for positive possibilities dormant in every situation.

The book’s author goes on to explain different exercises and principles that are very realistic. No, I’m not talking about a bunch of positive fluffy mumbo jumbo. That’s not really my thing. The lady who recommended the book to me is also in a wheelchair with multiple sclerosis and she said it has helped her cope. I took her recommendation to heart because a few years ago I think I may have overestimated the negative effects that living in a wheelchair would leave on my life. And so far this book has opened my eyes to new possibilities. I have new ways of looking at the same things.

I’ve decided to adopt an optimistic explanatory style to interpret the world I live in. I’m seeking out the positive. Something I don’t usually revert to. My husband once said that if I won the lottery, I’d be worried about paying the taxes! The idea that things are never as bad as we originally think is not a new concept. I just usually blow things way out of proportion.

Achor says it’s about using that downhill momentum to push us in the opposite direction. Now that seems tricky to me but I’m willing to give it a try. The question remains, can a change in my mindset really change the objective world around me?

“The Happiness Advantage: The Seven Principles of Positive Psychology That Fuel Success and Performance at Work” by Shawn Achor.

39

Make It Work

My family takes a week long cruise every two years during Thanksgiving. I myself have gone three times in the past but never with my husband and certainly never in my present state. So it was the first time for both of us in many ways. He has never been on a cruise of any kind. I have never been since my diagnosis has tainted me physically. So, it was bitter sweet.

For my husband I could understand the 10 years it took him to finally agree to join us. First off, it is basically all my friends and family. That means most importantly his in-laws including his father-in-law (my father). Secondly, to make matters worse, my poor hubby was sea sick the majority of the cruise. Remember, it was a SEVEN-day voyage. I should have known it was going to be rough for him because he can barely stomach flying!

As for me, it was challenging viewing a world I use to be an active part of. Many of the activities offered on board that interested me really didn’t accommodate me. Also they only offered two wheelchair accessible excursions at the three ports of call we stopped at.

Still it was nice to be catered to. It was welcoming to be surrounded by family. It was great that for once hubby wasn’t totally responsible for the cooking and cleaning. Also we still participated in many activities despite the accommodation hurdles.

It was scary yet invigorating to step out of my comfort zone and to revisit an old pastime yet in a different way. Because of my fatigue it was exhausting trying to keep up with everyone else…but I did. We did!

I’m so proud we made it work and had a good time.