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The Curious Case of Multiple Sclerosis Part I

MS and the aging process

Me and Mrs. B

Me and Mrs. B

Hi friends-  I’m repeating this particular blog solely because a long lost photo album was just discovered and in it were pictures of me and my best toddler friend.  What better way to show the bridges from childhood to old age and back again than me and my Mrs. Beasley? 

Plus, this particular post never gets old.

Even as I do!

Road trip

Road trip

How is it even possible that an illness can make you feel like a little old lady and a little girl at the same time?    It seems only multiple sclerosis has the insanity to do just that.

The old lady part isn’t surprising; I have felt older than my actual years for some time now.   It started even before my MS diagnosis with innocuous signs such as: this former party girl no longer interested in well, partying, my not being able to stay awake until the end of a movie, having trouble getting myself up when sitting on the floor, my aches, and, of course my pains.

My MS diagnosis coincided with additional signs such as; choosing to no longer sit on the floor, engrossing conversations regarding boring medical stuff, a super sized portable pill container filled with a wide assortment of needed medications, a written list of all my medications tucked securely in my purse in case I need it but never in a place where I would remember it, and my extreme forgetfulness.

Not my pills

Not my pills

What were we talking about?

Oh yes, “my dose of thyroid medication is much higher than your dose, dear.”

MS making me feel older than I want to feel comes with the MS territory.  But recently, this illness had me feeling like a little girl as well.

It was during a road trip my dad and I were taking to visit a sick relative.  Going back to the old lady thing for a bit, my dad and I have taken a lot of road trips lately as he has (thankfully as city driving is just too much for me,) appointed himself my designated driver to all my appointments.

Road trip Portugal

Road trip Portugal

We have turned Driving Miss Daisy into Driving Miss Yvonne.  But at least my dad and I have a common taste in rock music to listen to along the drive- take that Morgan Freeman!

Usually half way through the drive to the big city my dad stops for coffee and while he chats with the counter girl, I slip into the ladies room.   This time however, we drove right past our regular stopping place.  I didn’t panic.  I had to go but not too badly and I was a grownup, I could hold it.

Forty-five minutes later though the city traffic was at a stop and go crawl.  I had forgotten about city traffic, old lady again. I tried to hold it, I really did.  I wasn’t five years old, this was silly.  But as the next exit approached, I broke down.  I was a child again.

Not my dad's car

Not my dad’s car

I think I said, “sorry Dad, but can you take the next exit, I have to use the bathroom and don’t think I can wait til we get there.”

But it came out sounding like “Daddy, I have to go potty right NOW!  Really, really bad!”

I waited for the response my dad would give me back when I was five, “be a big girl and hold it Yvonne- we’re almost there.”

Or, “didn’t I tell you to go before we left?”

I worried that he would go back to being the dad he was at that time and just pull over expecting to me go on the side of the road.  Thankfully, the seventies were over and my dad decided maybe coffee wouldn’t be so bad after all and he took the exit.

Back on the road and listening to Elvis, the side trip to a bathroom made me think of my childhood.   Not for the first time I wondered if I had jinxed myself with an illness that made me feel older than my years.

Road Trip Beach Bar

Road Trip Beach Bar

As much as I love babies now, when I was a little girl my go to comfort doll was Mrs. Beasley (who in my family thought that giving me an old lady doll would be a good idea?)   You remember her, the grandmotherly looking doll Buffy on Family Affair dragged around.

My dad drank his coffee and started to sing to Elvis.  It again reminded me of being five when he would sing Elvis songs into a hairbrush for me as he got ready for work, making up lyrics when appropriate or when he forgot the real ones.

Not my dad's coffee

Not my dad’s coffee

So, maybe the movie of this time in my life isn’t Driving Miss DaisyMaybe it is actually The Curious Case of Benjamin Button.   Maybe MS has just screwed up the natural order of the aging process, accelerating to elderly stage and then going back to being a kid.  Hopefully, this time I will be cuter.

Would anyone like to play a quick game of Candyland?  No, not on the floor, let’s use the kitchen table like the grownups do.

And then it will be time for my nap….

Not my napping feet

Not my napping feet

Road trip image courtesy of digitalart at FreeDigitalPhotos.net

Pills image courtesy of koratmember at FreeDigitalPhotos.net

Bentley image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net

Coffee image courtesy of artzenter at FreeDigitalPhotos.net

Feet image courtesy of FrameAngel at FreeDigitalPhotos.net

 

MS Hips DO Lie

New multiple sclerosis symptoms go musicalID-10019101

I was sitting in a meeting a couple of weeks ago when my left hip started to vibrate and shake.  It felt like how it felt in the old days when we had pagers or antiquated cell phones attached to our belts.

Immediately I went looking for my phone.  Did I forget to turn it off?  Was it on silent mode in my pocket?  This was very possible as I have said over and over, my cognitive abilities stink and so who knows where anything is on my person?

But no, my phone was completely shut down and resting lazily in my purse which was slung over the right side of my chair.  My hip continued to hum.  Was this a new MS thing?

Ironically, I was at an MS meeting and was surrounded by fellow MS’ers.  I wanted to ask them what they thought but what if this wasn’t MS related. How do I explain this bizarre vibrating going on?

ID-100286182

What if they thought I was crazy?

What if they thought I was a perv?

This vibrating, shaking hip thing continued throughout the afternoon and made me think of a Rolling Stones song, (of course it did,) called “Shake Your Hips”; specifically the line that says, “do the hip shake thing.  Do the hip shake thing babe.”

So now, while I was trying to concentrate on the meeting, I was also dealing with a hip dancing on its own and had an awesome Stones verse stuck in my head.

Since that meeting other body vibrations have started to occur; the right hip, one foot but I can’t remember which, (next time it happens I will clarify), a leg, (ditto on which) and back to the left hip again.

It would be nice if these limbs were dancing in a sequence but alas, since this is probably multiple sclerosis, of course they choose not to cooperate.

It might be for the best. Most dance places don’t get exciting until after 10 PM and I’m always in my pjs by then.ID-10042722

Then recently, I got mad at something.

Really mad.

Really, really mad.

So mad my body started to shake.

I had never had that happen before although I have heard people talk about it.  My body was doing its own thing once again, vibrating in parts and shaking all over.

When I get in a bad MS way I turn to my faith.

If I’m so bad off that I’m being way too stubborn to appreciate God’s help, then I turn to humor.

And when I am so grouchy that anyone who tries to make laugh might get their head bit off, it’s then I turn to music.ID-100146496

And so, I couldn’t help thinking of Shakira’s song, “Hips Don’t Lie.”  Except, as far as I was concerned, my hips were lying.  Since they couldn’t be bothered to tell me what they were doing, they were lying!

At least the line in her song fit, “ahh baby when you talk like that, you make a woman go mad…”

And mad I was.  I was mad at MS, I was mad at the world, I was mad at my weird body parts.

I was mad that when my hips were shaking they didn’t look anything like Shakira’s hips.

It’s a cruel world we live in folks.

One song sung by a woman too beautiful to be believed was not enough to get me out of my crabby place.   More shaky songs came to mind, like the Cars “Shake it Up.”

I laughed at the line that says “do the move with the quirky jerk.”  Oh yes, that’s one move my body does know.  I was quirky jerking all over the place…

ID-10085329

As I was letting my body do this weird multiple sclerosis dance across my living room, I grew tired, spent even.

I felt all shook out.

I felt all shook up.

And then, then I thought of the music of my Elvis childhood.  One more song might get my body to relax and get the anger out of my nerves.  I looked up “All Shook Up.”

Did you know it’s an MS song?

Seriously, check out the lyrics if you don’t believe me.  MS gems abound like, “Well, my hands are shaky and my knees are weak, I can’t seem to stand on my own two feet.”

And “My tongue gets tied when I try to speak, my insides shake like a leaf on a tree.”ID-100289380

Supposedly Elvis recorded this song about falling in love but I don’t believe it.  I have been in love, lots of times, and it never felt like this.

Then again, I am single so maybe I wasn’t doing it right?

The point is, before I knew it, I went from being mad at the world, to dancing my strange MS body around my apartment to watching old Elvis videos on YouTube.

And I felt better.

So, are vibrating body parts and shaking limbs more symptoms of multiple sclerosis?

If so, then I guess that’s just how it goes.

I try to stay positive and so I came up with this-

If my body is moving around on its own, well that’s a lot less exercise I have to do!

Yea!ID-10057662 (1)

 

Image courtesy of Donilo Rizzuti at FreeDigitalPhotos.net

Image courtesy of Ambro at FreeDigitalPhotos.net

Image courtesy of photostock at FreeDigitalPhotos.net

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Image courtesy of jscreationzs at FreeDigitalPhotos.net

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Image courtesy of farconville at FreeDigitalPhotos.net

The World is coming to an End Part 1

Multiple Sclerosis is uncool

 

The world is coming to an end!

Perhaps that statement is a little extreme.  But when I saw the commercial that was my first thought.

What commercial you ask?

The one where Henry Winkler tries to get people 62 and older to contact him about a reverse mortgage.

You remember Henry Winkler of course; he was the coolest of the cool.  He was the Fonz and no one was cooler.  By his own admission, Elvis was close but that was all,.

Fonzie wasn’t just cool for the 50’s, the time period when Happy Days took place, but for the seventies and eighties too.

Personally, I was never cool.  But I was somewhat smart and as a somewhat smart person, I knew how to recognize cool immediately, even in my own family.

 

When I was 10 I had an adorable male cousin who was 6, always in trouble and funny.  And I just knew he was cool.  So cool that when my aunt bought him an Evel Knievel doll for Christmas, he had no qualms about announcing that he was disappointed as he already had it.  And none of the adults thought that was rude.

 

I then horrified my family by stating that I would love to take it off his hands.  It was not cool for a 10 year old girl to want to play with an Evel Knievel doll.  But, being smart, I only wanted the doll so it could be my Barbie’s new boyfriend. And how much cooler could Barbie be than by dumping Ken and taking up with Evel Knievel as a new boyfriend?

 

Now I’m in my forties and being cool or uncool isn’t as important, or so I thought.  But Henry Winkler being a spokesman for something only available to people over 62????  That is very upsetting and very, very uncool.

Since I’m not in my sixties, not quite yet anyway, my reaction to this commercial was a little drastic.  But the most upsetting part was when Fonzie said those who called and requested the free reverse mortgage packet would also get a free magnifier with an LED light so they could better read the info.

Why was this upsetting? Because I had just bought one a few months ago!!

Yes, I already have a magnifier with an LED light and I actually paid for it.

 

Yes, I was offended that my over 62 friends could get one free when I had to pay for mine but the bigger issue is when and where did I start needing something like that?

The even bigger issue is when did Fonnzie lose his coolness and what does that mean for the rest of us who aren’t cool but need people like him to help us through this uncool world? I worry that when Fonzie is no longer cool the world as we know it has likely come to an end.

One of the many super sucky things multiple sclerosis has done in my life is to make me feel as if I am aging rapidly and in confusing and upsetting ways.

One minute I’m a child and “I need to go potty RIGHT NOW” and in another minute I’m an old lady who “is feeling a little unsteady sonny, can you help me cross the street?”

 

And this concern shouldn’t be a cosmetic one but let’s face it, it is.  Last spring I got carded buying a bottle of wine.  Only six months later I was walking my three year old great nephew down the street when a neighbor asked if he was my grandson.

I’m used to being uncool.  And I know that MS is a very uncool illness.  To help me better cope with it I need the cool reminders of my youth.

I need to know that MS hasn’t robbed me of all of my most important skills.

I need to know that I still know cool when I see it.

MS=Not Cool

Henry Winkler advertising products for the older crowd= Not Cool

Fonzie in his best Fonzie years- Cool

My family, friends and readers= Super Cool!

 

Guess I still have that skill after all….

Petless

A multiple sclerosis companion

Picture 13

I didn’t have any real pets when I was a kid. At various times I had a hamster, a guinea pig and a fish named Elvis but I am not counting those as “real”. By real, I mean a pet that you can cuddle with and who is able to roam safely and freely around your house.

My mom was ailurophobic, which is just a fancy way of saying that she believed she was a mouse in another life, and cats were out of the question. She did like dogs, but did not like the money, mess or work involved with letting your kids have one.

 

I tried getting around that by kidnapping dogs from time to time and saying they followed me home. The first one REALLY did follow me home, and when it looked like the dog officer wouldn’t be able to find his owner, we almost got to keep him.

Since I got close, my nine year old brain figured it was only a matter of time before an owner would not be found and started grabbing dogs by the collar and dragging them home with me. What I didn’t figure out is that their collars had their owners name on them and thus, never got to keep them.

 

Too bad too, as a pet could really come in handy now. My rental does not allow pets and so I am still petless. But all the smart people on the web say that pets can help promote healing. Luckily for me, my portable air conditioner must have read those same websites.

During a miserable heat wave in my area, when I really needed healing, my ac came through. It wasn’t only that it helped me cool down, it took to staying by my side as if it felt the need to cuddle.

 

I don’t think the fact that I was staying glued to its cold little body had anything to do with it. My ac seemed to want to bond too.

With my MS comes the annoying symptom of having to pee constantly. The heat and humidity didn’t help as I needed to drink more water, which meant I needed to pee even more.

Here is where the real  bonding came in. Suddenly, my little ac had a small bladder. The hotter it got, the more it had to pee as well.

Technically, the ac actually had a small basin that collected water droplets and needed to be emptied frequently, especially in the humidity. But how else do you explain it when I got up in the middle of the night and my ac had shut down, looking pathetic and in major need.

 

I emptied myself, and emptied my ac. It really had to go and actually had an accident on my bedroom floor. But water free, we both settled down to try to rest.

Two hours later, I was up again. Getting out of bed, I saw my ac looking agitated and miserable. It was almost as though it was saying “Yvonne, wait for me! I have to go too, really, really bad!” This continued throughout the heat wave; relieve myself, relieve the ac, rest briefly, repeat.

During that horrible week my ac and I grew closer than I ever thought possible with any of the dogs I tried to drag home. And with the comfort it offered when I was an achy, miserable mess, I realized the experts are right. Pets do help promote healing!

 

This particular blog may seem familiar to some of you.  It resembles one I had previously posted here, Feelin Hot, Hot Hot and was a blog I wrote for another website, MSRelief.com    

I haven’t run out of new ideas- MS seems to offer a lot of them!  But have been a little overwhelmed  lately.  I promise an original blog again soon.

 

The Curious Case of Multiple Sclerosis Part 1

MS and the aging process

How is it even possible that an illness can make you feel like a little old lady and a little girl at the same time?    It seems only multiple sclerosis has the insanity to do just that.

The old lady part isn’t surprising; I have felt older than my actual years for some time now.   It started even before my MS diagnosis with innocuous signs such as: this former party girl no longer interested in well, partying, my not being able to stay awake until the end of a movie, having trouble getting myself up when sitting on the floor, my aches, and, of course my pains.

My MS diagnosis coincided with additional signs such as; choosing to no longer sit on the floor, engrossing conversations regarding boring medical stuff, a super size portable pill container filled with a wide assortment of needed medications, a written list of all my medications tucked securely in my purse in case I need it but never in a place where I would remember it, and my extreme forgetfulness.

What were we talking about?  Oh yes, my dose of thyroid medication is much higher than your dose, dear.

MS making me feel older than I want to feel comes with the MS territory.  But recently, this illness had me feeling like a little girl as well.  It was during a road trip my dad and I were taking to visit a sick relative.  Going back to the old lady thing for a bit, my dad and I have taken a lot of road trips lately as he has (thankfully as city driving is just too much for me,) appointed himself my designated driver to all my appointments.  We have turned Driving Miss Daisy into Driving Miss Yvonne.  But at least my dad and I have a common taste in rock music to listen to along the drive- take that Morgan Freeman!

Usually half way through the drive to the big city my dad stops for coffee and while he chats with the counter girl, I slip into the ladies room.   This time however, we drove right past our regular stopping place.  I didn’t panic.  I had to go but not too badly and I was a grownup, I could hold it.

Forty-five minutes later though the city traffic was at a stop and go crawl.  I had forgotten about city traffic, old lady again. I tried to hold it, I really did.  I wasn’t five years old, this was silly.  But as the next exit approached, I broke down.  I was a child again.

I think I said, “sorry Dad, but can you take the next exit, I have to use the bathroom and don’t think I can wait til we get there.”

But it came out sounding like “Daddy, I have to go potty right NOW!  Really, really bad!”

I waited for the response my dad would give me back when I was five, “be a big girl and hold it Yvonne- we’re almost there.”

Or, “didn’t I tell you to go before we left?”

I worried that he would go back to being the dad he was at that time and just pull over expecting to me go on the side of the road.  Thankfully, the seventies were over and my dad decided maybe coffee wouldn’t be so bad after all and he took the exit.

Back on the road and listening to Elvis, the side trip to a bathroom made me think of my childhood.   Not for the first time I wondered if I had jinxed myself with an illness that made me feel older than my years.  As much as I love babies now, when I was a little girl my go to comfort doll was Mrs. Beasley (who in my family thought that giving me an old lady doll would be a good idea?)   You remember her, the grandmotherly looking doll Buffy on Family Affair dragged around.

My dad drank his coffee and started to sing to Elvis.  It again reminded me of being five when he would sing Elvis songs into a hairbrush for me as he got ready for work, making up lyrics when appropriate or when he forgot the real ones.

So, maybe the movie of this time in my life isn’t Driving Miss Daisy.  Maybe it is actually The Curious Case of Benjamin Button.   Maybe MS has just screwed up the natural order of the aging process, accelerating to elderly stage and then going back to being a kid.  Hopefully, this time I will be cuter.

 

Would anyone like to play a quick game of Candyland?  No, not on the floor, let’s use the kitchen table like the grownups do.

And then it will be time for my nap….

Image: FreeDigitalPhotos.net

Image: FreeDigitalPhotos.net