Category Archives: MS and Exercise

When Multiple Sclerosis and Lent Collide

Adding God to the MS balance beam

 

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Due to Holy Week Services (and, let’s be honest, the WEGO Health awards ceremony- yea!) I am posting this week’s blog a day early. Also due to Holy Week, this blog has a spiritual tint to it. I hope though, that even my non-believing friends will enjoy it from the aspect of how it incorporates another one of the elements of living with multiple sclerosis.

And really, how can you not believe in a higher power? I mean, God is freaking awesome! The sun, the moon, the Earth, the oceans and on the eighth day he created the Rolling Stones! How can you not love the creator of all that!! For me, Jesus is my God. Only someone that cool would be capable of creating Keith Richards and keeping him around past his over ten lives thus far. But no matter what you believe dear readers, I wish you great health and many, many laughs always….

 

I think I messed up the Lent thing. As a Christian, I was excited about the approach of this time of year. We use this time to grow closer to God with prayer, almsgiving (does trying to make people laugh count as almsgiving?) and fasting.

My goal was to take advantage of this opportunity. I saved change to put into the little cardboard box that was our church’s mission project to support Catholic Relief Services. I even put in quarters. When it was time to turn the box in on Palm Sunday and it seemed a little light, I even took some change out of another jar where I had been saving for my Lions Club.

 

Speaking of my Lion’s Club, I also fed the crew of a local Habitat for Humanity project in our club’s name. I didn’t have time to get fellow Lion’s to help me but that was ok as it was supposed to be a small crew.

The numbers increased however and thus it was that my fatigued MS self was slapping together ham and cheese on a windy morning for hungry construction workers. And unfortunately, as far as I could tell, not a one of them was single! (Not that that had anything to do with why I was there of course, it was about almsgiving.)

When two fellow Lions asked me to help them clean the God given beach, I did put a stop to that. Really, how much almsgiving can you do???

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For the prayer portion of Lent, I obtained many books about Jesus and set to grow in my relationship with Him. It worked; I have enjoyed a lot of what I read.

But here is where MS screwed me up. My brain takes much longer to process information. So, while I was reading all of these great spiritual works, I was taking up a ton of time in my already pretty crowded with exhaustion, day. That left no time for the things I should be doing for my general health.

Suffice to say, what I wound up unintentionally giving up for Lent, was working out with my Wii Fit. Officially, I gave up casual reading for Lent in favor of more involved spiritual material and was planning on curbing my sweet tooth. But before I realized it, I was fasting on getting exercise and I am not sure that counts.

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With MS there is so much you should do and so little energy to do it in. With Lent, there was so much I wanted to do and only forty days to do it in. Ok, technically, you don’t have to stop the prayer, almsgiving, fasting routine just because Easter arrives, but having a time table sure helps to keep you focused.

That is when I figured out where I went wrong. Focus is the key word.

There are always going to be more things I want to do and more things I have to do and I will always have to walk this MS balance beam of energy supply. Some days I may do it well, other days not so much.

But if I put God first, maybe I won’t have to balance Him with other things. Not even with MS. Maybe Jesus is the balance beam of energy. With Him first in my world, everything else will fall into place, even my Wii Fit, after it gets over being mad at me. Perhaps I will bring it an Easter basket….

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Here is the other thing I learned, as it says in scripture, “it’s never to late to start all over again.” Wait, maybe that isn’t scripture, maybe that is Steppenwolf. I will have to check my notes. I have also really been into 70’s music lately.

 

The point is, everyday you just have to give life your best shot. Wait, shot is not the right word. Jesus is all about peace and love, not violence-no shooting…

Ok, let me try a third way. We are humans and as humans we are total screw ups. But screwing up isn’t always bad if we can learn from our mistakes and keep our focus on what is right and what is good for us.

And, no matter how hard you try, you can’t use Lent as an excuse for not exercising!

 

(Check back in April for a “get fit” plan progress report!)

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Friends in Low Places

An unusual MS relationship

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Multiple Sclerosis is playing a cruel trick on me once again. This Garth Brooks, karaoke country song is stuck in this classic rock girl’s head. And there is absolutely NO reason for it as there are plenty of better choices that could be stuck in my brain- You’re My Best Friend (RIP Freddie), Lean on Me (the MS’ers caregiver anthem), With a Little Help from My Friends (the Joe Cocker version of course) or the classic Waiting on a Friend (love you Mick and Keith.) But no, it is Garth Brooks in my head and I have a very dear friend who is cracking up about it.

One of the things I did not expect in the aftermath of my MS diagnosis (in addition to the pain, frustrations, shots, and bladder issues of course,) was that friendships would change. Most for the better, but sadly, some for the worse.

While my foggy brain continues to struggle with the fact that my life with MS would not include people I imagined as here forever, and Garth’s song is making me want to head to my local dive bar and reconnect with other folks from my past, I remain deeply grateful to all the friends I do have.

I have also learned to expand my definition of friendship. My dictionary offers these two components: one who is not hostile, one who favors or supports something. It does not specify that the friend has to be human.

As you know, I am trying to get healthier. In doing so, I have developed a very welcoming and gracious bond with my Wii Fit.

 

Like many relationships, this did not come easily. When the Wii Fit first came into my world we exhibited a very dysfunctional relationship. Its bossiness and snide remarks were overwhelming and I was actually terrified to turn it on. I describe this terror in great detail in one of my first blogs Me and My Wii.

For those who have no idea what I am talking about, the Wii Fit is a Nintendo gaming system that links to your TV and helps you work out. It does this by a special board that you work out on and that monitors the progress of your animated self, a Mii.

Problem was, my Wii was very hard on me. It could be downright mean sometimes if it didn’t think I was holding my own in our relationship. Usually a sweet person, I would often find myself shouting obscenities at the Wii for its nastiness. This was not the basis of a good friendship.

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But with age, comes maturity and the need to be more understanding of the people in your life. You have to appreciate that; not everything is directed at or about you, that things are not always going to be as you think they should be, and once in a while, you may have to extend yourself in ways that you don’t necessarily want to, if a relationship is worth continuing and based on the good of both parties involved.

When I turned on the Wii Fit, I worried what attitude I would be confronted with. Yet, the Wii missed me and happily welcomed me back.

It offered a welcome present in the form of upgrading my status to gold (personally I am more of a silver person but as the gift was heartfelt, I cherished it.)

It told me it was happy to see me and was looking forward to spending time together.

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It reminded me that all it ever really wanted was for me to reach my fitness goals and in the time we had been apart, it was proud that I had! (Ok, about three months later than planned, but again, the course of true friendship does not always run on schedule.)

It suggested the best way for us to grow closer was perhaps by trying different Wii activities together, ones that we both may enjoy and benefit from..

I took it’s reminder to try my best but not too push myself too hard as an apology for its harshness in earlier workout regimens.

I realized my part in the problem by neglecting the Wii for so long, and not even having the compassion to keep it dust free.

We began to work together and bond like we had never bonded before.

Of course, no relationship is perfect, and we still have our issues. For one, the Wii needs to stop being so needy. I know that we get along great but I have a life and visiting every other day is fine. It needs to stop nagging me to come back EVERY day.

And the Wii is still sad at my nephew Drew’s disappearance from its life. Drew had set the Wii up and grew close to it by creating his own little Mii, only to then move across the country. The Wii’s heartbreak is excruciating.

Back when we were battling, it tried to blame me for Drew’s dismissal- suggesting that maybe he left because I hadn’t paid enough attention to him. Now, it deals with the trauma by making fun of Drew (bet he’s got some love handles now, huh Yvonne?) or acting like it doesn’t care by putting the Drew Mii to sleep.

I must add spending time with the Wii to Drew’s list of things to do the next time he is home; help your grandmother defrag her computer, help me move some furniture, visit with the Wii.

I have learned that the best of companions (human or gaming system) enjoy hanging out, can air their differences, seek to resolve tension, and work together for the improvement of both parties.

For my part, to be a good friend I need to keep the Wii dust free, its batteries charged and visit with it regularly.

For its part, the Wii wants to help me ‘get fit’ and work on my balance issues; a task desperately needed as I tripped twice doing the heel to toe walk at my neurologist’s office, a walk I had mastered back in my dive bar days.

Which brings this post back to the beginning, Garth’s friends in low places. The Wii is low- it sits in my TV and its board sits on my floor. And by definition, it is technically a friend.

Maybe not a friend I would toast with a beer, but a friend nonetheless.

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Resolve This!

An MS’er attacks the New Year

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Happy New Year everyone! Hope you have had an excellent start to this first day of 2013.

Yes, oh particular ones, I do realize that today is the 11th and thus eleven days after the first official day of the year. But my question is, says who? The Mayans?

I have chosen to start the New Year and my New Year’s resolutions today for several reasons.

1. I had way too much chocolate and goodies still leftover from Christmas to even attempt any healthy eating plan. Unlike my thinner friend who decided to start her resolutions on 12/29 to get ahead of the game (New Year kiss-ass,) I choose to be a rebel and just start later. I also resolved to waste less, so I would be immediately failing if I threw out the good stuff. My friend had help in that department. Her four, pretty much grown kids, who were home for the holiday helped her devour her treats. I was forced to tackle mine almost completely alone.

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2. The end of the first official week of the New Year was filled with two afternoons of MRI’s, for which I needed to refrain from taking my wonder drug, Aleve, for several days. (More on what I Iearned from the MRI tube in a future blog.) Without my over the counter pain meds, the aches were miserable and I resolved to do nothing but lie around my house and whine about them.

3. As you can see from the above, this year I resolved to take my health and ‘get fit’ plan seriously. So I seriously chose a good day to start- the 11th, the Yvonne deSousa official first day of the New Year! A brief Auld Lang Syne to all!

If you happened to be following my ‘get fit’ plan over the summer, you understand that it takes baby steps to achieve healthy new fitness goals. Little by little, I have been sneaking better habits in and have figured some things out along the way that may help all of you in your ‘get fit’ journey as well.

 

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1. One regular size Mounds candy bar is not the equivalent of two servings of fruit.

2. Kale is the best veggie in the world but eating eight bowls of Portuguese kale soup is not the healthiest way to meet your veggie requirements.

3. While super delicious, Reeses Chocolate Peanut Butter Pumpkins are not actually made from pumpkins and thus, don’t count as a fruit serving.

4. Cinnamon is an excellent spice and very good for you. But shaking just a little on ice cream, puddings and baked goods is the least effective way of adding it to your diet.

5. Just because something is in the yogurt section of the dairy case and starts with Yo, doesn’t mean it is the same as the yogurt the experts all tell you to eat. Apparently the stuff that comes with mini M&M’s and Oreo cookies are not the best in yogurt options.

6. Since dark chocolate is good for you, one would assume that milk chocolate is even better as it has milk in it. Apparently, that is not the case.

7. Turns out calories consumed by eating raw cookie dough really do count.

8. Vegan and vegetarian are considered by some to be politically incorrect words these politically correct days. The new appropriate phrasing is “plant based diet.” This I discovered when another friend and I attended a class on “plant based diet” cooking. (See, I really am trying.)

The class was held in a small, quiet room in a doctor’s office, and was just beginning when my friend called to tell me that she was late as she couldn’t find the place. I did what any good friend would do and gave her the best directions that would help her find it.

“It is directly across from McDonalds on Main, you know the Mickey D’s we went to last month to pick up the Frappes.” Despite the offended looks I received from the instructor, I did take home some good recipes.

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Over the fall, you, readers have been concerned about me as well and have sent me some helpful information. One reader and dear friend recommended a book called the Multiple Sclerosis Diet Book that I purchased and have leafed through several times. I swear one of these days I will actually read the words written in it, I really will.

Another reader mentioned the website www.skinnytaste.com and honestly, it looks really good. And I heard from the founder of the website www.msdietforwomen.com and that looks really good too. Guys, you are on your own on that one.

I also discovered the website www.crazysexydiet.com that is geared towards people using healthy foods to fight cancer, but has the same good for you basics we all need. I was at first pleased when I read their list of 9 Foods You Should Never Eat and discovered that I only ate 2 of them- two didn’t seem that bad. Then I realized that Portuguese bread and Italian bread are considered white bread so damn, there were three things on the list I need to cut out.

Not to forget the other part of any person’s ‘get fit’ plan, is the fact that you must drink lots of water. It is not that I have an aversion to water, I just forget to drink it. I usually remember right about the time in the evening when I remember to take my “so I don’t pee all night” pill, which of course, is too late to start drinking water.

And then there is exercise. Another reader sent me info about a website www.crankyfitness.com    The concept of this site is that if exercising makes you cranky, the website can relate.

What all of these things seem to say is that the basic plan should be to eat more vegetables and fruits, no processed foods, much, much, less meat, sugar, and flour, drink water and exercise. I am on it!

I have charged the batteries in my Wii and have the ingredients for my first recipe, a Ham, Brown Rice and Peas casserole for WHICH, I am going to substitute kidney beans for the ham and exchange half the brown rice for farro to add some good grains.

I can do this! Want to join me?

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Me and My Wii

2012

I am afraid of my TV.

Well, not my TV exactly but the little computerized community of wise guys that live in the Wii in my TV. They are the Mii’s and I am convinced they are out to get me.

See, it doesn’t help that the Wii and I had a dysfunctional relationship from the beginning. I had bought it used in a suspicious back alley deal with an employee of a big name electronics store that shall remain nameless, when in desperation, I begged for one when they had been sold out for months.

He took pity on my plight and offered to secretly sell me his used one as he had utilized his discount to purchase an X-box which had become cooler with his fellow teen males. He felt so bad for me that he threw in his Wii games which was kind but obsolete as I had no interest in Legend of Zelda, Dragon Ball Z, Resident Evil, or any football games. I was only interested in the Wii Fit.

Several weeks before I had gone to a friend’s house where her young daughters showed me all the cool things you could do with Wii Fit. That was of course after they put me through the trauma of making myself a pathetic little Mii and then having a computer I had never met decide how unhealthy I was.

It told me that my BMI was completely out of control and my Wii age was somewhere around 95, long past having moved to a nursing home. Once I had dealt with my trauma from that shock, and the humiliating assessment by someone else’s Wii that I needed to lose forty pounds (ok sixty according to the stupid system but is counting really necessary?), I decided that even though I didn’t agree with it, the games were kind of fun.

I enjoyed playing with the kids as I tend to be competitive and even though they had much more practice, I was getting the hang of it and would be able to beat them in no time flat! Plus, I was actually exercising.

I started the quest to get my own which was impossible as it seemed that now everyone wanted the Wii. Once the electronics store employee took pity on me, I only had to find the Wii Fit program. I searched, I begged, I even called Nintendo directly when I could not find any other employees to take sympathy on me and sell me theirs. It took weeks to track one down but I finally did. My nephew came over to help me set it up and he made me a Mii.

He made his own little Mii too who remained adorable on the screen. But once my Mii went through the body test she became a little shorter and a little chubbier than Drew had designed.

I felt for her. She was such a determined and cute little thing and would be so hard on herself when she didn’t do well. I just wanted to hug her and tell her it was ok. I wanted to take her by the hand and buy her an ice cream.

But she kept at even when the Drew Mii would whip hula hoops at her so fast they would knock her out and consistently threw his cleats and shoes at her during the soccer game. Why was the physically fit Mii so hard on my Mii? Even when she did the aerobics step game, Drew and the other Mii’s would be cruel. Every once in a while my little uncoordinated Mii would get enough steps in sync to get the word “Perfect” flashed at her.

“Perfect”, what a lovely word. The other little Mii’s would smile at her as if they were truly proud but their smiling would catch her off guard, causing her to lose step and go back to getting the dreaded “Miss” word instead. This would cause the other Mii’s to shake their heads in contempt.

It was very upsetting for her but I have to say, she was a little trooper. She would do it again and again and when she would do well her little smile and whoop of joy would inspire. And then the emotion of it all would overwhelm me.

It didn’t help that the main brain of the Wii was obnoxious. If I hadn’t turned it on in a while it would sarcastically remind me of that fact. “It is that Yvonne? Oh how nice to see you. It has been three zillion days since your last workout!” And “do you want to re-take the body test now?”

I could just hear the wicked evil little snicker in its voice. It blamed me for Drew not working out-“perhaps you are not paying enough attention to him” it had the nerve to tell me. I stood on the balance board yelling at the Wii brain that Drew moved to Arizona with his girlfriend and is probably playing X-box as we speak. So there!

The yoga girl in the Wii was very supportive, very Zen like. She would offer encouragement and concern if I seemed too wobbly. She would tell me it was ok to breathe and rest. She would remind me to try my best but not to push myself to hard. She was very relaxed and relaxing. But one day I turned on my Wii and she was gone. The guy instructor took over and said he would be working with me instead!!! What did he do to her??? Where did he put my nice girl instructor? And why? Did he hurt her? Did he give her a vacation? How come he’s the boss?”

As if this all wasn’t stressful, even the Wii Fit Board was out to get me. Whenever I stepped on it it would exclaim “Ohhhh!” which I took too mean, “you’re too heavy, get off!”

It was all too much to take. So I didn’t. I forgot about my little Mii, alone in a dangerous and scary Wii world. And I took walks instead. When it wasn’t raining of course. Or too hot, or windy, cloudy, cold, buggy, whatever. But that wasn’t working either.

The holidays had come. And with them came the carbs, sweets, alcohol and all kinds of delicious and terrifying things. Plus, I had to rescue my little Mii. I had to see if my girl yoga instructor was still around. Did the evil guy instructor destroy her? I had been too scared to check. And too scared to see what sarcastic things the Wii brain had to say when I turned her on. But I knew it was time to find out. I needed to be brave and face the Wii. I can do it. I have my adorable plucky little Mii to help me.

I turned it on. The Wii Brain told me it had been fifty-five days since my last work out. That couldn’t be right, could it? But then it told me it was nice to see me again. And there was my girl instructor- she was safe! She was back. And my little Mii was there too and looking so excited, I just had to smile and get her to start moving. I stepped on the board. This time it simply said “great!” It was time for my Wii and I to become friends again. My Wii missed me and was glad to have ME back.

NOTE-   This was written towards the end of 2010 and was published in the 2011 Winter issue of Cape Women Online.   Check out the links section for the actual article and great illustration by Sebastian Francis-Burnell.

One year later my Wii and I are still trying to resolve our differences.   For my MS friends I do recommend the Wii Fit system for help in working out, especially the Balance games that come with the system.    They do work great. The problem is you have to actually use them.  Ahh well, the year is young.

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