Keep Using Your “I” Words, Baby!

A Multiple Sclerosis VOCABULARY

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I had three ideas for a new blog this week.  Unfortunately, I also had a very dirty house.  Being a germ-a-phobe, the dirty house won.  

So I’m posting an oldie.  In honor of World MS Day next week, I wanted to post a favorite. (More on World MS Day at the end of this post.)  This blog is such a favorite of mine that I sent it to the editors of Something on our Minds Volume II where it was published.  

I hope you find it helpful my friends……

Some people say that good things come from bad.

Many others say that is crap.

I’m not about to earnestly debate this argument as my brain is just too fatigued to give it much thought.  But I will honestly say that one thing good that arose from my multiple sclerosis diagnosis was the increase of helpful vocabulary words beginning with the letter “I.”ID-10058081

Before MS, if someone were to ask me to quickly name a word that starts with the letter “I,” I would have to think for a few seconds.  Then I would say “Indian” which is no longer politically correct, and since Native American doesn’t start with the letter “I,” would be wrong anyway.

If I was given more time I might come up with igloo or iceberg, maybe iguana, but I would really have to think for a bit.  Pretty sad since I was an English major in college.ID-10049794But since MS, I know many words that begin with the letter “I” and some are actually helpful in my MS world.

I don’t mean “injection” which is technically helpful in a healthy way but is definitely not helpful in a real life way.

Nor do I mean “interferon” which I had never heard of before MS, and do not know what it means, but know that it is printed on my box of “injections” right over the words “Chinese hamster ovary cells.”

Nor do I mean “infusion” which I am sure I had heard of before MS but never really thought too much about.ID-10063511

The “I” words that have been added to my post diagnosis lexicon and which are truly accommodating are “ish” “ing” and “icth.”

Let’s start with my favorite-“ish.”

I love “ish.”

“Ish” rocks my world and absolves the normally precise me from all responsibility.

“I’ll be there around 9ish,” can actually mean, “no I won’t, but I’ll give it a good try.”ID-10019322

Or, “I have no idea what time I will get there and cannot even begin to try to rationalize how my morning will proceed and how fast I might be moving, but I will roughly aim for some time around 9 in our particular time zone.”

On a stretch it can even mean, “We didn’t state a specific time, did we?”

The reason why “ish” is so good is because not only are you not committing yourself in any way, the ishness of “ish” can be broken down by several factors.

My view of “ish” is not your view of “ish” and 9ish can be anything from 7 to 11 and there is nothing anyone can do about it!

It doesn’t just work on time either.   When someone asks my age, “30ish” or “how often do you exercise, “often, I try to exercise once or twice a week, ish.”

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Do you see the beauty of “ish?”  I never appreciated it until my diagnosis but I am thrilled to have “ish” to help me out.

“Ing” is great to use when I try to describe symptoms that are totally indescribable.

My ears are making this “ringing,” “buzzing,” or “clopping” sound.

My fingers are “aching,” tingling,” and “vibrating” all the “freaking” time.

My foot is “dropping,” my legs are “weakening” my head is “pounding,” my brain is “fogging,” my eyes are “blurring,” my skin is “itching,” my stomach is “twisting” and my bladder won’t stop “going.”

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“Ing” doesn’t let me off the hook as much as “ish” but it sure makes it easier to explain what is going on in my body even when I have no clue what that is.

But if I’m really too tired to come up with an appropriate “ing” word or there are just too many too sort out, then the best word is “icth.”  “Icth” just sums it all up.

Some days, you are just not with it and MS is doing its best to do you in.   Well meaning people may say to you “well, tell me, specifically, how do you feel?”  Sometimes you just don’t have the specific words they need to understand.  So I just say I feel “icth.”

It’s important to let out a little breath when you say you feel “icth.”  If you are not sure about “icth,” then please allow me to tell you it is the next step up from “ick.”

Anybody can feel “ick.”  But when “ick” is not encompassing enough of your overall ickiness then you must use the word “icth.”  “Icth” is “ick” times twenty.

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Not only does “icth” describe your ickiness combined with all your other symptoms combined with your overall exhaustion, it also says “stop asking me how I feel because I don’t have energy to explain it to you!”

MS friends, far too many times, “icth” is my favorite word.

May you not have to say “icth” too often.

But if you do, then I’m glad “icth” is available for you too.

Friends, World MS Day is 5/27/15!  This is a day where MS’ers from all over the world come together to share our struggles, our symptoms, our strengths, and our stories.  It’s a day for all the way over 2 million of us.

Don’t know what you should do on this day?  Well check out the World MS Day link for ideas.

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Yeah, MS, Woo!

Multiple Sclerosis goes dancing

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The Rolling Stones were coming to town!!!!  Yes, THE Rolling Stones, right to my little corner of the world!

Ok, if you insist on being specific, it was not my town but the town right next door to my town.   The town that I could drive to in less than 10 minutes.  How much more exciting can things get?

Please allow me to digress slightly.

Previously I blogged about how I am not a fan of spring (Chop Their Happy Little Heads Off.)  True, I do not like the bugs, pollen, noises, crowds, heat and humidity that comes with spring and thus why I claim I do not like the season as a whole.

Recently however, I discovered (without even shelling out a dime for therapy) a secret, darker reason why I don’t like spring.  Turns out, it’s a sad, emotional reason.

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Here it goes- in my younger, exciting, party days, spring was the official start of the party season.  My friends and I would begin to venture out of our tiny, crappy apartments and gear up for beach parties, dive bar parties, wedding parties, patio parties, house parties and any other party we could come up with.

One friend lived on a farm and staged a three day “Welcome to Spring” party each year.  You could stumble home and come back during the three days or pass out in the hay next to the chickens- your choice.  But the party was on!

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Memorial Day was actually called “Memorial Day” as it was always an event just trying to remember how you spent it.  If you had a memory of the party that weekend, than you were memorable indeed.

But whether from multiple sclerosis fatigue or the scary aging process, these days, I prefer the cocoon of cold weather in the winter and the anticipation and stocking up for the cocoon in autumn.  Spring comes and I have no excuse to hide.  And since my energy is zapped and I no longer have the party spirit, I feel like I’m missing out.

Somewhere around me is a cute 21 year old girl with a future, sitting by a bonfire and flirting with guys just a little wild.   That girl is not me.  If she were me, she would actually be holed up on her sofa with an iced tea and a good book, doing her best not to fall into a nap that will disrupt her sleep cycle for days.

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But she used to be me and when spring arrives I feel like I am missing something.  And when I can’t FIND what I’m missing then I start to REMEMBER what I’m missing and it just makes me feel old.

So, when my Rolling Stones fairy godmother sent me a text to tell me that the next day the Stones would be appearing in the little town next to ours, I couldn’t say no.  Suddenly, since it was late April, the air of excitement hit and I looked forward to getting out.  I was going to party and see the Stones and maybe this year I would be young and fun once again.

It didn’t matter that the Stones were appearing in a concert DVD, Shine a Light, at a local hall as a fundraiser for a radio station- it was the Stones in my very own neighborhood.

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It didn’t matter that my fairy godmother and I would each pay $10 to see this DVD at this hall when we each had the same DVD at home and had watched it several times before.

And it didn’t matter that we would pay $7 for a small glass of wine when we each had plenty of bottles of wine at home.  We were getting out!  We were being social!  It was the Rolling Stones!

We reasoned that as this town was the source of many of our parties, we would likely see some old party friends at this event.  And since I was getting so caught up in the spring air I even started to wonder if maybe I would meet some cute male Stones fan I never knew existed.  It was spring and the possibilities were endless!

We donned our concert t-shirts and rock buttons and headed out.  We arrived early and sat in my car for a bit, where we watched old people, like really old, like mid-sixties and stuff, venture into the hall.

Where were they going?  They couldn’t be going to the airing of the Stones DVD- they were too old.   My friend and I knew better.

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Like we knew how wrong the DJ was when he teased some of those old folks about how Mick Jagger himself might show up.  What an idiot.  Everyone knows that it’s Keith who actually shows up to these things. Maybe Ronnie if he happened to be in the neighborhood but definitely not Mick.

We got our overpriced cheap wine in the plastic cups and headed in.   And everyone WAS older than us!  Everyone except the venue manager who kept calling the concert film and others like it “vintage.”

What the hell does “vintage” mean?  I thought it referred to wine that actually tasted like it cost $7 which our wine did not.

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As for the male Stones fan I would fall madly in love with? He was there alright.  My age approximately, kind of handsome but standing in the back by himself and not at all friendly.  All of that would be ok if he stood in the back so he could dance.  BUT HE DIDN’T!!!

In fact, NOBODY DID!

It was killing my friend and I.    We clapped and yelled and chair danced through the whole first half and then Tumbling Dice came on and we couldn’t help ourselves.  We danced. As the saying goes, “we danced like no one was watching” which was not the case as since we were the only ones, everyone was watching.  We didn’t care.

I tried to ignore the fact that we had to sit down right after that song. What happened to the days when we just HAD to dance through the whole concert?

The real surprise came when the Stones played Brown Sugar.  It was then that I realized my friend and I were in an alternate universe.  Nobody moved.  You have to be in a coma to not dance to Brown Sugar.

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I was at a live show once and a guy was taken out on a stretcher after a brutal fight with the very drunk biker behind him.  Even as the blood was spurting from his multiple injuries, the guy was waving his arms along with the “I say yeah, yeah, yeah, woo” lyrics he was hearing.

At this hall near my hometown, I was dancing.

My friend was dancing.

But the young manager who called the film “vintage” was not.

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The kind of cute, rude guy was not.

The other members of the audience who may have technically been closer in age to Mick and Keith than I was, were not.

It didn’t matter that they politely clapped after each song.  How could they possibly be appreciating the music if it wasn’t giving them the energy to move?

The Stones had even played Start Me Up and again, nothing.

It was then that I realized something important.

This knowledge is crucial.

It may even reverse aging or even, maybe, just maybe, cure multiple sclerosis.

The lesson is this-

No matter how old you are or how tired you are or how weak you are, you can still rock life and have fun.

You just have to appreciate the Rolling Stones to do so…..

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Not Just About the Cupcakes

A multiple sclerosis statement

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There’s a new hero in my MS world.

He gets me.

And he gets away with saying things I want to say.

I learned a long time ago that heroes don’t always come with a cape. And sometimes they may even be con artists.

Life is too short and so if you find a hero, treasure him.

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Or her.

Speaking of short, my new hero is very short.  His name is Mateo and he is three years old.  He’s the “‘Linda listen’ cupcake kid.”

If you don’t know what I’m talking about and have access to YouTube do yourself a favor and do a YouTube search with the words “Linda, listen.”   You will find an awesome video of Mateo pleading his innocence to a judge, his mom.

The Crime- Mateo is accused of conning his grandmother into letting him have cupcakes specifically after his mother told him he was not allowed to have cupcakes.

The Defense-Mateo is pleading not guilty as since the alleged crime took place in his grandmother’s house, his mother’s law does not have jurisdiction.

The Sentence- If convicted, Mateo will face a pow pow on his butt.

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Some of you are probably parents who will insist that children should not argue with their parents or that a pow pow on the butt is not a proper punishment.   I’m not a parent so I’m not going to weigh in on those issues.  I will point out however, that when one of my nephews misbehaves a “simple time” out usually works pretty well.

Oh who am I kidding? My nephews are perfect.  They never misbehave.

These issues aside, Mateo is probably one of the best lawyers I have ever met and I used to work with a ton of them.  Really, Harvard should give him a teaching job.

And while I have on several occasions been guilty of eating cupcakes I knew I wasn’t supposed to, that is not why Mateo is my hero. He is my hero because he says outright, loud and clear, over and over, “LISTEN TO ME!”

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Haven’t you ever wanted to say that to those around you?  For me, it’s happening more and more, the longer I live with MS in my life.  And I’m not talking about the naysayers in the world, those that judge you and it doesn’t really matter if they listen to you or not: their ears will never hear you no matter what you say.

No, I’m talking about the people closest to us, those who really want to help.

And I love them- I truly and deeply do.  Mateo clearly loves his mother.  You can tell as even though he is calling her ‘Linda,” he also calls her “honey.”  I believe he does this so she knows his frustration has no bearing on how much he loves her.

But despite that love, he wants, no he needs, to be heard!

Likely you know what I am talking about.

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From an MS standpoint, one example may look something like this; someone asks you how you are feeling and you tell them.   And then they ask why you feel that way.  When you can’t tell them why they come up with non-MS reasons likely, to try to make you feel better about having MS.

But it doesn’t help to hear, “you do too much, you don’t do enough, you sleep too much, you don’t sleep enough, you need to rest more, you need to get out more, you need to fight more, you need to give in some…..”

It doesn’t help because we already know all this!!!!  We are constantly, daily, hourly, minutely (I don’t care if that’s not a real word- it should be,) trying to balance all this out ourselves.  And we have told you this a million times before.

“Linda, honey, listen to me!”

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Then there are the times you describe your symptoms and someone replies, “oh, don’t feel bad.  I do that all the time. If that’s MS then I’ve got it too, haha.”  Not that helpful.  Especially since what you just described is nothing like what I’ve described and I’ve described doing it constantly-daily, hourly, minutely (I really like this word.)

Then there’s “please let me know what I can do to help” and you think “awesome, great, fabulous.”  And when you say what would be helpful, say for example, A. B, C, or D,  you likely get B squared or E, F, and G in return,  And it’s really a bummer if G requires you to do  H, I , J and K just to make G work out for you.

Again, I and all the MS folks I know are super duper grateful for offers to help.   We just honestly appreciate help that looks like A, B, C and D.   As Mateo says, “you’re not listening to me!!”

Finally there’s us wanting to help someone else.  Our life has changed drastically with MS and while the changes may not be what we hoped, we still have lots and lots to offer.  So please, please, please believe us when we say “I can help by doing A, B, or C.  Will that help?  If so, I would be happy to do it.”

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But too often the person who needs the help responds “oh no, A, B, and C are way too much for you.  I will ask someone else to do that.   If you could just do D, that would be great.  D will be much easier on you.”  Despite after you have already explained why D would actually be too much for you.

At no time do I ever want to seem ungrateful.  That is why Mateo is my hero.   He makes his case in his adorable way and his mom hears him and is not offended.

It probably helps that Mateo is super cute, though technically that should not be relevant.  I just can’t help myself from admiring Mateo’s outright plea. Knowing that I would never be seen as cute if I was to boldly state “Listen to me,” I can feel better channeling my inner Mateo when necessary.

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But this isn’t the only reason why Mateo is my hero.  He’s also my hero because his argument got him on Ellen!

I’ve been trying to get on Ellen for years now and Mateo raised an argument and got on Ellen.

Just like that!

All he had to do was smile and give her a hug.  I could do that.  I may not be as cute as Mateo but I could flash a big smile and give Ellen a hug.

And if all that weren’t enough, Ellen gave Mateo his own private super hero tower of cupcakes!

And so, I’ll say it again.

“Listen, listen Mateo, honey, you’re my hero!”

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Happy Mother’s Day to my own Mom and to all the Moms out there…..

I’m not sure where the original video of Mateo came from but when I searched for it I found it on YouTube on-  thebigtinonetwork

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No Curtains for You

A multiple sclerosis shopping escapade

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We were going on a road trip, my mom, our friend Annmarie and I.  The goal was curtains.  I didn’t need curtains.  I probably needed to wash the curtains I had, but I had curtains.  The ones in my kitchen and living room were left over from the previous tenant in my apartment and she was practically eighty.   The curtains are probably even older.  It’s okay; they dim the sun enough so you don’t really see all the dust.

But my mom needed curtains and had a specific type in mind-63 inches, rod pocket, valance attached, lined, no embroidery, no plain colors, no ruffles, one rod only, energy saving, light diffusing and vibrant without being too flashy.  How hard could that be?

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Our dear friend Annmarie is not only a shopping expert but actually likes curtains.  She’s one of those super sweet, super talented people who also have patience and believes that curtains are no big deal.  She Googled curtains and found some places for us to check out.

We headed away from our little town over a bridge and into a city where we would visit curtain experts.  No ordinary department stores on this venture.

The first place we checked out was a brand new building with no identifying signs of any kind.  It looked very modern but suspiciously so.   We couldn’t figure out what kind of place it was, yet it’s where Annmarie’s trusty GPS told us to go.   I went to check if they were open, although open for what I didn’t know.  They were.

On one side of the building was a fancy store where they sold bedding and bath items but no curtains.   The other side was a factory.  We were in a towel factory.  I didn’t even know towels came from a factory.  I just thought they sort of existed on their own.

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Before I reported this to my companions, I needed the restroom, of course, which turned out to be one of the cleanest and fanciest I have ever been in.  I kind of didn’t want to leave.  It was so classy that they didn’t have a hand dryer or a paper towel dispenser; you dried your hands with real towels.  I was so impressed I tried to get my mom to come in and use the restroom but she just had curtains on her mind and didn’t need any distractions.

Next, we ventured into the heart of the city.  We could tell it was the heart of the city due to the ton of construction details we had to detour through.  The GPS did not like this.  It kept stating “recalculating, recalculating,” and if you ask me, it had an attitude about it.

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But it did direct us to a very large, very old building that we circled several times before we saw the sign for the curtain store. Once inside there were no more signs; just a dark building and a creepy staircase.  At the top of the stairs we saw curtains so up we went.

There was a door marked showroom but it was locked.  There was another door marked office and so I opened it.  The door slammed behind me with a loud bang and I jumped.  Suddenly there appeared a young girl who offered to open the show room for us.  It seems we went from a brand new towel factory to an ancient curtain factory.  The city was an old mill city so this wasn’t surprising.  My mom and Annmarie picked out some curtains that might work but Annmarie was not the type of woman to settle for “might work.”

We set off again.  But already, my MS bladder was calling and not to be outdone, so was my stomach. All of our stomachs decided to join in the rumbling too.  We stopped at a lovely Portuguese restaurant and had a delicious lunch.  Fortified, we found store number three which looked quite pleasant, with several styles of curtains to choose from.  But I chose instead to go visit the bridal store across the street.

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No, I’m not finally getting married, at least not that I’m aware of.  I was just sick of looking at curtains.  Until I entered the store and realized that looking at bridesmaid dresses wasn’t much different from looking at curtains.  I left and met my party- store #3 didn’t carry what my mom was looking for.

Next the GPS sent us to what looked like a deserted industrial park.  The tall buildings were dreary with busted windows and were spooky to say the least.  After circling another several times we found a teeny, tiny sign with the word “curtain” in it.  I couldn’t help it- I had to ask.

“Mom, doesn’t Sears carry curtains?”

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Annmarie and I ventured in first.  This building was dustier and spookier than the previous old building we visited.  There seemed to be no signs of businesses or of life of any kind.  There was a dramatic, ancient looking stairway with the date of 1890 carved into the steps. It looked exhausting and with little hope of finding what we were looking for, I was ready to split.  Annmarie said “I’m just going to see what’s upstairs.”  I heard her say “oh, no, this isn’t right.  What’s a beautiful sofa doing amid all this junk in this creepy place?”

I was convinced we might be in a Stephen King movie.  I worried that if we were in a Stephen King movie and something horrible happened to Annmarie I would look like a jerk if I didn’t get chopped up with her.  Despite my aching legs, I ventured up.  And she was right- there was a lovely sofa outside a huge room filled with junk and a bizarre ghostly old man on a cell phone who told Annmarie that he didn’t know anything about curtains.

You know how in all those slasher films the obnoxious kids keep walking deeper into the scary woods even though they know there is a serial killer in the scary woods?  That was us.  Intrigued, and stupid, we climbed a second set of stairs.  At the top we found more long abandoned filthy rooms but still, we kept walking deeper into the woods.  I mean building.

Amid all the emptiness we eventually came upon a potter’s studio.  Suddenly, a woman wearing a paint specked apron materialized behind us.

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“Oh, you must be the potter,” Annmarie said cheerfully.

“I’m not the potter,” the woman responded. “I’m the girl who needs to pee.”

As we backed away Annmarie cautiously asked about curtains.  The woman/zombie/ghost said “next floor.”  So exhausted, with MS legs of lead but now hell bent on destruction and at least pretending to back up Annmarie, I followed her up the third flight of sinister looking stairs.

At the top- we finally saw them.  Curtains, beautiful curtains displayed artfully in a large, bright room.  Curtains perfect for my mom if we ever got out of this building and got her in.  Annmarie called out for help and another pale ghostly figure appeared.  Annmarie asked about prices and the woman mysteriously stated “we don’t sell curtains.”

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At that, it was all we could do to run down three flights to the safety of the car.  And of course Annmarie was faster.  In my horror movie scenario I would be the slow kid who trips, falls and gets cut up first.  Luckily though, I made it out.

We guessed that when Annmarie “Googled “curtains” she had stumbled upon the curtain factory showrooms of old- most of which were abandoned now as everyone buys things online.  And items bought online don’t come from a factory. They come from Amazon.  But the ghostly building we were now happily leaving, we had no idea what that one was.

Annmarie’s search had one last suggestion.  We followed the GPS voice as it lead us to an actual department store with a whole section on curtains, drapes, panels, valances, tie backs, rods, sashes and even towels.  My mom picked out curtains that “would work” as oppose to the “might work” ones and we left, mission finally accomplished.

On the ride home, my mom remarked that the next time we went shopping she needed to find a present for her three year old grandson and she knew just what to get him.  Annmarie said she would type the word “toys” into Goggle for the perfect present.

I just sighed….

Kidding aside, it was actually a fun adventure, even with a bad MS bladder and achy MS legs. Still, I’m insisting on Toys R Us for my nephew’s birthday!

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So Much for Life Lines

A multiple sclerosis epic fail

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That’s it MS– you’ve gone too far!!!  I know I’ve said this before but this time I mean it.  You have not only let me down but you have failed someone close to me who needed my help and I will never forgive you!

When you live with an invisible illness it is often hard to explain to people what is wrong with you, especially when you mention cognitive difficulties.  What is that?  How is that different from just being a space shot?  Isn’t it really all in your head?

Cognitive difficulties are hard to explain, especially since you are usually having cognitive difficulties right when you need to explain them.

Just this week I was asked to give a talk about my book, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis to a women’s professional organization.  The talk included a free dinner so of course I was excited.

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I had been given the date, time and location several months prior.  I put the info on my calendar. I put the info on my website. I confirmed the date, time and location several times with the member who invited me. The day of, I decided to confirm the time and location once again.  Cocktail hour was at 5:30; I definitely didn’t want to miss that.

So imagine my confusion when I pulled into the restaurant at 5:35 only to find one car in the parking lot and a big sign that said the restaurant was closed.

How could this be?  Where were the people who invited me?  I called a friend who quickly gave me the name of the place I was supposed to be at, the restaurant where the event had always been scheduled.  Yet each time I looked at the notice, I saw the name of a totally different restaurant.

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The bigger perplexity of all this is the actual restaurant was one I like better then where I thought the talk was going to be.  And the name of it?  The Bookstore restaurant!

You would think since I was talking about my book a restaurant named The Bookstore would have stood out.  Luckily it wasn’t too far away from where I thought I was supposed to be and so I arrived only a tad bit late.

It was a lot of fun.  And this MS cognitive mishap helped give me a humorous opener to my talk titled, Laughing through the Pain.  But the frustrating part was that I checked, rechecked, double checked, triple checked and checked again the location of the event.  Thank goodness my friend was home or I never would have made it.  Of course, I didn’t think to bring the contact info of the member who had asked me to speak. And in case you’re wondering, the dinner was yummy AND I ate the veggies that came with it.

The bottom line is that I’m used to my MS brain doing this kind of annoying thing and the only thing that surprises me is that it keeps surprising me.  But sometimes, this blackout of information is not funny at all.

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My mom needed my help and due to multiple sclerosis, I couldn’t provide it.  I like helping people and I believe it’s important to help others whenever you can.  I like to think of myself as responsible, the one you can turn to in your time of need, especially if your need happens to be in my particular area of expertise.

But my mom, who has been my rock on this journey, called out to me in a crucial time and I was beyond useless to her. My guilt, shame, heartbreak and fury remains.

What did she need that multiple sclerosis refused to provide?

A ride to an appointment I couldn’t give her due to fatigue?

No.

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Help hanging new curtains that my balance would not allow?

No.

Help running errands when I haven’t run in years- MS or no MS?

No.

What my mom needed when she called in desperation was the prize winning answer to a Rolling Stones trivia question just asked on the radio. AND I DIDN’T KNOW IT!

How could that be???  You’re probably thinking, “oh, that’s all.  That’s no big deal.  Yvonne is exaggerating again.  Unless the prize was a thousand dollars.”

But you are wrong!  This was huge!  I don’t even know what the prize was, likely a t-shirt or something.

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The problem is that my mom should have no question that I am her go to person when it comes to the Rolling Stones.

(Frankly, I was pleasantly surprised when she told me she was listening to a radio station that would ask a Stones trivia question until she told me that it was an oldies station!  When did the Stones become oldies?!!!)

I have always prided myself on my classic rock knowledge, especially when it comes to my favorite group.  Back when Who Wants to be a Millionaire had phone lifelines I made sure all my friends and family had memorized my number specifically so I could be their classic rock life line should they happen to find themselves on the show.

Just this week I was watching Millionaire and there was a Neil Young question that, of course, I got right.

What was even more upsetting was the fact that the question my mom asked was very similar to a question a radio station asked me at a concert this summer.  And the answer was the same!  Shouldn’t that have stayed in my memory bank?

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My mom’s trivia question was what was the Rolling Stones first hit?

I tried to cheer myself up with the knowledge that it was a vague question.  What constitutes a hit- top 20?  Top 10? #1?  And does the word “hit” mean in the UK or the US or both?

I could make all the excuses I wanted but the answer was It’s All Over Now and I should have known it.

The scary fact is that if I can’t be helpful to my family and friends when they need me, then what?

If I can’t remember crucial information like Rolling Stones trivia then what will I forget next?

Driving to the wrong restaurant is easy.

I can certainly deal with forgetting how to spell my own name- it’s kind of a tricky one.

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And I’ve long moved on from the time I forgot how to take a shower while I was taking a shower.  Cleanliness is overrated.

But forgetting Rolling Stones trivia? That’s just unforgiveable MS!

But what can I do?   I can only rest, take my meds, play brain games and spend hours with my Stones cds in an attempt to keep this trauma from occurring again.

And I guess I better go buy my mom a t-shirt…

Thank you to the Business and Professional Women’s Association of Lower Cape Cod.  I had a great time!

Once I found you….

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Chop their Happy Little Heads Off Again

Multiple Sclerosis gets ready for spring

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I tried friends- I swear I did.  I ventured outside one day earlier in the month when it was actually nice.  I noticed the lovely colors and the smell of mulch and thought maybe the coming weeks weren’t so bad.  

Then the Bruins lost their playoff bid ending their season and the sun was still high in sky at dinner time.  And so I went right back to longing for a freak April blizzard. When none came, I had to accept that winter was over and there was nothing I could do about it. But it doesn’t mean I’m happy about it!  To see why not, please check out this old blog….

It’s official- spring is here.   And I am probably the only person in the world who’s not happy about it.

The rest of you are lying to yourselves about how wonderful the arrival of spring is.   To me, what spring really means (think of this in the singsong voice of Dorothy from the Wizard of Oz), “heat, and pollen and bathing suits, oh my!”

None of which I am excited about.

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The heat and pollen completely do me in medically speaking and only serve to make me long for the cool days of fall and winter when it is perfectly acceptable to curl up under a blankie with a good book and a cup of tea.  Unfortunately, that cup of tea also includes a cookie or two which is why I must throw in the bathing suit part of my dread.

How do I know spring is here?  Is it the weather?  Of course not.  I live in New England and it was seventy degrees last week with a chance of snow for the following weekend.

Is it the ridiculous looking daffodils that shot up on the sides of roads and yards as soon as one March day’s temperature hit over 40 degrees?   Everyone sees the yellow and white blooms and begins to remark how lovely the flowers are, even as they sneeze and sniffle away.

“What a joyous reminder of the change of seasons we have,” say those jaded spring loving fools.

Many can look at the daffodils and see their sappy little faces just oozing smiles and grins.

“We have sprouted and we are so beautiful,” they seem to gloat.

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I just want to bring out my scissors and chop their happy little heads off.  Right before I run to the store to buy more tissues and allergy drugs.

Crucially important disclaimer.  While I honestly admit that I want to chop off the heads of the happy little buds whenever I see them, with one hand on the Bible as I type I SWEAR that I did not actually cut the daffodils in my friend’s yard.  I may enjoy fantasizing about early flower homicide but I would never actually commit such violence.  My deepest sympathies go out to my friend who is still mourning her flower loss and bad season vibes to the person who committed the vandalism.   May pollen forever coat your car you real flower killer.

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But again, how do we in Cape Cod know when spring finally arrives?  For some maybe it is the influx of traffic on our local roads complete with construction to tie up those roads.  Construction that begins right about the time everyone decides to leave their homes after winter hibernation and get out and enjoy the unlovely air.

Is it the sounds of businesses opening or the lack of complaints about the people who frequent those seasonal businesses? No.

For me what made it official that spring is here was this- today I found a dead carpenter ant on my kitchen floor.

That, like no other sign lets me know that I am in for it.

This dead ant is a warning of great trouble to come.   I don’t know how he died or why he chose to die in my kitchen but I can correctly assume that he has lots of friends that will come looking for him.

I am a Christian and believe that God created all things, even happy looking ridiculous daffodils that sprout too early and annoying bugs that invade my home.  But why do they have to invade my home?  You don’t see me going to their house and collapsing on their little ant hill floor.

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I know the Bible that I have just put down says that I am to care for all creatures and feed them when they are hungry.

Ok, I am good with that.  Hey ants, tell me what food you like best and I will deliver it.  Brownies?  Sure, I will surround a trail around your little ant hill.

Chips?  Absolutely. Barbecue, sour cream and onion or just plain?

Spilled drinks?  Name your favorite-lemonade, Kool-aid, oj, milk- whatever and I will pour it all over my yard.

Whatever you want just stay out of my home, at least until you help pay the rent.

The Bible also says you must shelter those who are homeless.

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Fine, I will build you little bug shelters around my yard, hey even around the daffodils that an old tenant planted, giving you a nice happy view.  I just don’t want to throw you a party in my living room.   I have enough trouble walking without tripping.  Worrying about stepping on you dead or alive is just too much trouble.   You gross me out and, like the flowers, remind me that my least favorite season is here.

After I try to get rid of you I will need to pull out my AC and fans, dust the pollen from everywhere daily, do errands first thing in the morning to avoid crowds and in complete terror try on my bathing suit in case I ever happen to get enough energy to actually hit the beach.

Ahhh, the beach.  The colors of the water are especially gorgeous right now.  And, since it isn’t that hot yet and the mosquitoes and green heads haven’t arrived, maybe I can actually enjoy hanging on the beach for a bit before the real humidity sets in.

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And hey, since my MS feet have gotten used to the “sand in my toes” tingly symptom, maybe I can actually walk on the beach and get some exercise.

Ok, so maybe there are one or two perks to this least favorite season of mine.

Dead bugs and overly zealous flowers are not among them however.  Quick, find me some bug spray and garden clippers and let’s get through it.

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Holy Multiple Sclerosis!

MS negotiates Holy Week

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Friends- my blog takes an aspect of my life living with multiple sclerosis and then pokes gentle fun of that aspect.  For me, religion is a big part of my life and thus, is where this particular blog post developed.  Please don’t let the religious topic alienate you as I think whether or not you attend Church, you will relate to some of the things I mention.

BUT, if you’re looking for some faith based fun and inspiration, all the better!

I grew up a casual Catholic, receiving the main kid/young adult sacraments while hardly ever going to church.  Then I unofficially stepped away from my faith for a bit- meaning, I got lazy and just didn’t think about it too much.

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Somewhere between 10-15 years ago God compelled me to walk back into the church of my childhood and I instantly realized all that I had missed.  The point being, I am now a practicing, pretty devout (although that word is hard to define,) Catholic.  And so I should be pretty familiar with how and when things go when it comes to Mass.

Leave it to multiple sclerosis to throw that off a bit!

You can probably guess some of the obvious ways that MS tries to mess with my faith, like when it comes to fatigue.  Since there is a shortage of priests (anyone thinking of becoming a priest- do it!  The church needs you and no worries, the vestments are way cooler than they used to be!) my parish priest is actually the priest of two parishes which means Mass on Sundays is at 8:30 AM.

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Who the hell, oops, I mean heck, is even up at that hour????  There’s no way MS is going to let me get out of bed at that time every Sunday.  Luckily, there is a vigil mass the night before.

Of course the cognitive difficulties don’t help, especially since just last year the powers that be revamped the wording of some crucial and common elements of Mass.

(Ok, they actual made these changes several years ago but it seems just like yesterday.)

When someone says “Peace be with you,” if you respond “And also with you,” you haven’t been to Mass in a really, really long time.

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Or you have MS.

(If you start thinking of Darth Vader that just means you’re a child of the 70’s.)

If you are Catholic and are constantly trying to figure out the best time during Mass to use the restroom without being too disrespectful, you may have MS.

And you would think the whole stand, sit, stand, kneel, stand, kneel, sit again thing would be tough but since it’s really the only exercise I’ve been getting lately, I’m ok with it.

But this Holy Week MS threw some different church related issues my way.

It started at the Palm Sunday vigil.  My friend and I had gone together and we both wanted to make Lenten confessions.  She went in first and was in there for a really, really long time!!

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What could she possibly be confessing too???  The whereabouts of Jimmy Hoffa?

Since our priest had to start Mass soon I was getting pretty anxious, so much so that as she opened the door to the confessional, I grabbed her and yanked her out!

(Ok, that’s not quite true.  There was actual a guy ahead of me.  It was him who I really yanked out.)

Back in our pews, we suddenly heard this booming voice from hidden speakers welcoming us to church.  Mass usually starts with a hymn.  I grasped the pew and began looking all around.  Was this it?  Was Jesus returning to Earth, right then in my little parish?

Ok, if it was, that would be a good thing but I must have looked a little panicked anyway as my friend giggled and reminded me that the voice was our Priest using a microphone from the vestibule behind us, blessing the palms before the opening hymn.

I’ve been to Palm Sunday masses several times.  I should have known this but I guess this little bout of confusion is a good reminder to be prepared, HE can return at any time.

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Then there was the issue of where to put my palms.  They are long and delicate and there is really no place to put them. My friend was on the inside of our pew and nobody was next to her so she had tons of room to lay her palms down.  I did not.  I certainly couldn’t put them on the floor- these were a symbol of Jesus’ triumphant entry into Jerusalem; the floor was no place for palms.  It didn’t seem right to put them behind me in case I crushed them or sat I them.  This became quite a frustrating problem. I finally to decided to put them in the little box where the church keeps the missals.

My palms promptly started to fall to the floor.  I saved them just in time and then did my best to carefully prop them in the spot so that they would safely stay there.  The problem was solved just as my priest arrived to bless them and I had to quickly disassemble and raise them, only to get them blessed and start the safely propping process all over again.

My friend just shook her head in disbelief.

MS and I managed Holy Thursday and Good Friday ok.  The next issue came at the Easter vigil.

Due to the two parish issue this service was being held at the OTHER church.  My priest needs to alternate this service yearly since it is a long Mass and this year was THEIR turn.

I don’t like it.  I like my church.  My church is perfect. My church does everything perfectly, including collection.

See, at my church we have ushers who have baskets with long handles and all you have to do is toss your money into it.  If your aim is bad, that’s ok because the ushers enjoy playing a fun game of catch the bills with their baskets and it always works out ok.

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But the OTHER church has a basket they pass around and I’m just not used to that. I was at the vigil with another friend and when the basket came to her, she went to hand it to me and my hand did one of those MS jumpy/leapy things, the same jumpy/leapy thing that causes me to accidentally flip my flip phone into the air.  (And my friends want me to upgrade to a smartphone- yea right, like that would be smart. Total MS random thought, if I am constantly, unintentionally flipping my flip phone would I actual learn to be smarter with a smart phone?)

Anyway, back to the collection basket. When my hand did the jumpy/leapy thing that could also be clumsiness but I’m blaming MS like I always do, my friend accidentally jolted the basket and some of the money fell out.  She grabbed it and put it back in but was totally mortified.  Personally, I thought it was kind of funny.

I didn’t think much of it, until the second collection when the usher wouldn’t give us the basket!  Clearly, he no longer trusted us. Wow.  Those parishioners at that OTHER parish are so uptight.

Or, perhaps, he was just saving us the embarrassment of another basket fail.  Maybe he was actually trying to make it easier for us- no worries for the clumsy ladies- he was on it.

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And even though the choir at the OTHER church wasn’t my church’s choir and the stained glass windows weren’t the stained glass windows at my church, they were both pretty cool.

And the people were pretty cool too.

And I suppose Jesus probably doesn’t love THEM more than he loves us.  So I guess the point is, we are all in our faith together and we are all brothers and sisters of Christ.

No actually, as this is an MS blog the point has to be about MS.

So, the real point is that, me, life, faith, and God, we can all handle whatever MS decides to throw at us!  And sometimes, we’ll even make a joke about it.  Or turn it into a blog..

Happy Spring Everyone- HE Is Risen!

(Well actually, he rose like four days ago but my blog comes out on Fridays so there you go…..)

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Tumble Bunnies for Easter

A retro MS post for spring

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So this week’s blog post happens to coincide with Holy Week which means that it also coincides with religious obligations, family obligations, friend obligations, MS obligations, life obligations and resting obligations.  What that means is no new blog for you!  Hahaha!

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But I thought this post from two years ago is perfect as it talks about bunnies which people often associate with Easter, (silly bunny, Easter is for Jesus,) and I am trying to psych myself up to tackle this cleaning project next week.  

I hope you find my cleaning dilemma amusing dear friends!  

And Happy Easter,  Happy Passover (no bunnies but lambs,) and Happy Spring!

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Those of us living with multiple sclerosis understand that our symptoms will change over time, go away, come back with a vengeance, and too frighteningly often, get worse.  This is the unfortunate reality of MS.

MS’er’s are so used to this, that it sometimes becomes tricky to tell what is a new MS symptom and what is just life.   It becomes convenient to blame MS for lots of things.  Sometimes it becomes convenient to blame MS for everything-works for me anyway.

I get really frustrated however when neurologists tell me what I am describing is not MS.  How do they know?   My personal, favorite examples are weird ear noises and always arriving 15 minutes late to wherever I am going.   My sister Laurie has these same symptoms and they started for both of us after we each received our diagnosis.

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Yet, the web, the books, and the docs all say that these are not actual MS symptoms.

So I don’t expect they will accept my latest symptom as MS related either.   They would be wrong.

In addition to the aches, the pains, the fatigue, the uncontrollable bladder, the cognitive difficulties, the ear noises, and always being late, MS has also given me a messy house.

This is particularly frustrating as I have always been a neat freak and a slight germaphobe, even before the word existed.  I like things clean, squeaky clean. A sparkling, germ-free home and lifestyle are just who I am and what I have always maintained.

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But in the years before my diagnosis, cleaning became harder to keep up with; and I wasn’t sure why.  Likely it was because I was working 40 hours and was so freaking tired all the freaking time. I became frustrated at the mess my house became and did my best to wash and mop when I wasn’t working or sleeping.

I even tried hiring people to clean for me.   The two women were from Brazil and their lovely accents reminded me of my Portuguese relatives.   As it was their first time at my house, their boss insisted I stay while they cleaned so that I could make sure they were doing a good job and that they were cleaning the way I liked.  It was hell.

They wouldn’t let me help them and wherever I moved to get out of their way, I wound up more in their way.  And it was beyond weird to sit on my butt while women I barely knew cleaned my own home.

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I told them I was just getting something from my car and drove off, feeling like a fugitive, coming back only when I was sure they were almost done so that I could pay them.  They did a great job, but I just couldn’t have them back.  It was way too decadent and odd.

Then I received my diagnosis and along with it, a prescription for legal speed.

My other issue in my clean compulsiveness is that I have to do my whole small house at once, so the dirty part won’t re-infect the clean part.   I managed this by popping one of those precious pills, blasting some good rock music and dancing around my house with a mop in one hand and a sponge in the other.  I developed some great cleaning/dance moves.  But the side effects of the legal speed weren’t great and when my insurance changed, so did the affordability of the legal speed.

The messiness grew.

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People talk about dust bunnies.  I wish I had dust bunnies.  Cute, little friendly specs of dust that you may occasionally spot in the corner of a room.  I have dust roaches.  They multiply like, well roaches and aren’t so cute.

Recently I couldn’t take it anymore and so I doubled up on caffeine and on my anti-viral meds that somehow help with the fatigue even though I have no idea how or why, and attacked my home.  I decided, like with other things MS related, I should just get over myself and accept my limitations.  I may not be able to do the whole house at once anymore.  So I focused on the most needed rooms, the two bedrooms and the bathroom, essentially half the house.

The small spare room was easy; three minutes of dusting, one minute of vacuuming and change the bed sheets.

My bedroom was a little more tiring but I got it done, capturing bunny after dusty bunny.

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The bathroom was the hard part- scrubbing tiles, toilet, tub and sink, and washing the shower curtain, bathroom rugs, and the floor.

When I was done I was super tired, super hurting, super whiny and super frustrated, but half the house was clean.  I vowed I would rest a couple of days and then do the other half.

Then MS and life kicked in and before I knew it, it was weeks later and half the house was messier than ever.

The major bummer of this new MS symptom is that it doesn’t matter if you take care of it, it will come back.  So now, the unclean half of my house is disgusting and the clean part is no longer clean and I am back to where I started.

The dust bunnies in the bedroom have joined with the dust bunnies in the living room to become these huge dust monsters.

Frankly, I’m afraid of them.

They remind me of tumbleweeds in the desert, especially as they blow around my floor as I pass by them.

Do I clean the really unclean part first and then clean the already cleaned part?

Do I give up and go hide out in a cave, hopefully a clean cave?

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Like many things MS, just trying to sort this out is exhausting.  I can easily keep up with the basics like washing the dishes every few months, and changing the bed sheets every few years.

But it is the major stuff that gets me.

As I type, the tumble bunnies are multiplying and growing.

The inside of my bathtub has turned blue from the lack of scrubbing and who knows what in the well water that runs through my faucet.

It is hard to know if my eyesight has worsened or if it is the layers of dust on my TV and computer screens that are blurring the images they are projecting.

I will just do what MS’ers like me do and learn to adjust.

At least the blue on the inside of my tub is a pretty blue, I will think of it in a decorative sense.

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Maybe the dust covering the TV is there so I don’t actually have to see Nicki Minaj and Mariah duke it out.

And maybe stepping around the tumble bunnies is great practice for keeping my balance steady.

This is how we MS’ers role; finding ways to work within the bounds of the symptoms of the illness.

So whatever you do, don’t tell me that my messy house is NOT a symptom of MS

And if I am supposed to meet you somewhere and am more than 15 minutes late, look for me under the tumble bunnies- they may have finally attacked.

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MS Moments Not So Magical

What a multiple sclerosis moment REALLY looks like

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This magic moment,

So different and so new

These are the opening lines of a sappy sweet song by the Drifters that is actually about a couple falling in love.  Yet the song is stuck in my head as I am analyzing and over analyzing other “moments” in my life.  The opening lines fit with the undesirable moments I am talking about; moments that have nothing to do with the rest of the song which is really about, well, desire.

I think the MS community might have stolen the term “MS Moment” from another community, namely, the elderly.  It seems to me that before MS ever really entered my consciousness in any serious way, I heard a lot about “senior moments.”

Actually, just before I was diagnosed myself, I was having a ton of “senior moments” which was scary as I was only in my thirties.  And I wasn’t drinking anywhere near as much as I used to.

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Turns out my senior moments were actually bouts of cognitive deficiencies that as I talked to other people with MS, became MS moments.  As I go about my life looking to be cheered up by a giggle or two, I can actually find some of these moments amusing.

There was the time that I tried to reheat my large mug of tea in the microwave only to have the mug not fit.  I struggled and struggled and grew confused as this was something I did all the time.  There was no reason for the mug not to fit.

Minutes of drinking lukewarm tea later, I realized that the problem was that the “microwave” I was trying to put the mug into was actually the toaster oven.  How does this happen?  They aren’t even near each other on the counter.

Or there was time I got all dolled up and was so pleased that my hair was cooperating that I sprayed it with hairspray to keep it that way.  But as I suddenly started to gag my hair moved and I realized the problem was that my “hairspray” was actually body mist.

And no, it doesn’t hold your hair in place and what they say is true- too much of a good thing is actually quite smelly.

And sure, I’ve forgotten to take the cap off my water bottle before refilling it and I’ve put pepper on my yogurt when I really wanted cinnamon. But these are things that in retrospect I actually find funny.

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But then there are the MS moments that can be expensive.  Too often I buy something I don’t need while forgetting the thing I do need, or buy something and then forget I have it even as I am looking at it and then have to throw it away when it gets way past its expiration date.

I’m pretty frugal and so I make a habit out of looking for coupons, cutting coupons, bringing coupons to the grocery store and even taking the coupons out of my purse.  Only to forget to give the coupons to the cashier, realizing this as I put said groceries away back at home.  Being on a budget makes these MS moments costly but since I’m not dealing with super pricey items, I can often laugh them off too.

It gets harder to giggle though when the moments become frustrating.  I like ice hockey and recently read a great article about a Boston Bruins icon, the player who has his own statue outside of the Boston Garden featuring him flying through the air to make a goal.  Only a couple of days after reading the article I had forgotten this famous player’s name.

Everyone knows this guy’s name.  You can’t say you are from New England if you don’t know this name and I had just read his name over and over.  I had to admit my cluelessness and ask a friend who gently reminded me that the name I was looking for was Booby Orr.

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But I’m sure I didn’t have to tell you hockey fans that.

This multiple sclerosis moment was frustrating in a recreational way.  But it can get more serious when I do things such as search over and over on important paperwork for a crucial deadline only to not see the deadline and turn the paperwork in late.   Or, when I check and recheck the paperwork only to submit it and find out I did half of it wrong even though I checked it, rested, checked it again and checked before turning it in.

Then there was the time I forgot how to spell my own name.

It probably doesn’t help that my last name is a little unusual with the first two letters of it being lower case and then a capital letter three letters in.   What makes it even more baffling is that my cousins don’t spell it this way.  They capitalize the first letter and then the third.

(Thanks dad and Ellis Island for making even our last name confusing.)

Two years after it had been up I was looking at my website and realized that my name was spelled wrong.  How could my web guru have made such a mistake?

I fumed.  I furied.  I frustrated and decided I needed to rest.   I came back to the website and grew even more angry when I saw the misspelling once again.  Yvonne deSousa.

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It was later in the day, just as I was about to send off an email requesting an immediate correction when I realized that my guru had spelled my name on my website exactly as I spell it.  He hadn’t messed it up at all, I had just forgotten how to spell my own name!

(Slight plug for my web guy as he really is awesome and I’m embarrassed about the above issue still.  If you are looking for web help, you can find more about his expertise here-Kemp Resources.)

Many people will say “we’re all spacey” or “I do that all the time..”

But with MS moments the problem is that we aren’t able to check our mistakes because even when we check and re-check them we don’t see the mistake.  It’s like our brain doesn’t accept the mistake as a mistake once we make it.

I don’t know if this also happens with senior moments as what I always thought  were senior moments were actually ms moments and so now I don’t know what to think.

Then there are MS moments that are just not funny at all.

Recently I was taking a shower and being the good conservationist I at least attempt to be, I shut the water off while I soaped up.  When it was time to rinse the soap off, I could not, for the life of me, remember how to turn the water back on.

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This wasn’t a quick lapse of memory.  It took me a while to figure out what to do and how to get the water back.

Who can measure shower time? This didn’t last hours or even minutes but it sure felt like it.  It did last long enough for me to begin to panic. After a while, I remembered how to use my faucet and resumed my shower.

This incident was very scary.  Downright terrifying even.

When people ask why MS fatigue is so bad I tell them it is because it makes these issues worse and these issues can be frightening when you think about them in the long haul.  And that is the crux of MS.

As we close MS Awareness Month it is important to remind others what some of the scary moments of multiple sclerosis looks like.  Because at its core it is a terrifying illness that needs research, awareness and a cure.  Like right away.  Like now!

True, I spend my days open to the amusing moments because that is how I survive, no thrive, in the face of the horrible symptoms and unknown future.  I believe life is too short and when you can find a smile, treasure it.

But it’s never lost on me that those smiles don’t take away from the debilitating nature of MS.

Sometimes though, they just might help you power through them….

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Friends, do you want to do your part to help find a cure for multiple sclerosis?  If so, check out iConquerMS and consider joining with others for are working together for a cure!  Signing up is free and easy, even for someone like me!

Post blog note-  

  Friends,  I unintentionally proved my point within this post. A reader commented that I spelled the hockey great’s name as Booby-yikes!!! I didn’t mean to do that and edited and checked and rechecked this blog several times before posting. See what I mean about MS and the cognitive issues? For the record, his name is Bobby Orr! And yes, I do find this MS moment amusing. I don’t know if Mr. Orr would however…

Focus image courtesy of Master Isolated images at FreeDigitalPhotos.net

Drunk woman image courtesy of Saphatthachat at FreeDigitalPhotos.net

Piggy bank image courtesy of bplanet at FreeDigitalPhotos.net

Don’t forget image courtesy of Stuart Miles at FreeDigitalPhotos.net

Shower image courtesy of winnond at FreeDigitalPhotos,net

Smiley image courtesy of Stuart Miles at FreeDigitalPhotos.net

 

Rock and an MS Hard Place

Multiple Sclerosis goes classic

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I am a child of classic rock.

Well, actually, that’s not really true.

It would be true if I was Jade Jagger, Kelly Osbourne, or Liv Tyler.

I’m really the daughter of a Portuguese dad who wanted to be Elvis, and a mom who liked music from foreign men whose lyrics she didn’t even understand- think Julio Iglesias, Placido Domingo and Luciano Pavarotti.

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My dad wanted to be Elvis so much that he named me after Elvis’ famous daughter, Lisa Marie Presley.  It didn’t really make sense to me since the only way that could be true was based on my middle name Marie being the same as Lisa’s, but which also happened to be the same middle name of about 98% of females of Portuguese descent.

Anyway, I majorly digress.  Where I’m going with this is that despite my musical upbringing, for good or bad, when multiple sclerosis gets really horrible, classic rock music comforts me.

Hey, you have your thing, I have mine..

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It comforts me so much, that it’s way up there on the list of things that I find comforting.  The list goes something like this- God, humor, classic rock and the Boston Bruins.

Oh yes, family, friends and drugs are on the list too but all of them are getting annoyed with me writing about them.

And I’ve learned that it’s not just the hard hitting drumming, the amazing guitar solos and booming bass that bring comfort and help to induce some much needed energy.  (Insert scary image here of me trying to dance around my apartment while a good radio station plays in the background.)

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But, I have begun to realize that even in unobvious ways, the lyrics are a huge help too.

As Keith Richards always says, a man with three daughters by the way, the meanings behind many of his lyrics are hard to understand but the emotions they invoke are not. But me, I think I have discovered the meanings of some classic rock classics and can explain their multiple sclerosis connection.

Don’t believe me?  Well, I can prove it. Here are some of my favorites-

I’ve been bit and I’ve been tossed around

By every she-rat in this town

Monkey Man by the Rolling Stones.

This one has a double meaning for me as “she-rat” refers to MS drugs made from Chinese hamster ovary cells (which definitely bite) and by the fact that I was such an ugly baby my sisters told me I was adopted from a monkey family.

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The Stones are actually very concerned about people with MS.   “I’ve been soaking up drink like a sponge,” is a line from their song, Dear Doctor.  I’m sure the drink they are talking about is H20.  What else could it be?  In the title alone, it is a medical song.  Who can say that the doctor they are talking about is not a neurologist?

For more on Rolling Stones songs with MS themes, check out my prior post Like an MS Rolling Stone.

Ain’t it funny how a crowd gathers around anyone living life without a net       Dogs on the Run by Tom Petty

This song refers to people noticing those of us with balance issues trying to survive an icy sidewalk.

I’m going off the rails on a crazy train- Crazy Train by Ozzy Osbourne

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Does this one really need further explanation?

Hot legs, wearing me out.

Hot legs, you can scream and shout 

Hot Legs by Rod Stewart

What could Rod possibly be talking about other than painful and temperature sensitive extremities?  I know he wasn’t meaning this in a sexual way as this was one of my first nephew’s favorite songs when he was only five.

Rod Stewart - Hot Legs.

Still not convinced?  Later in the song Rod talks about needing a shot of vitamin E which is used to strengthen weak cells.

Ha! Try defeating THAT argument!

Lay lady lay, lay across my big brass bed   Lay Lady Lay by Bob Dylan

Thank you Bob. I am so freaking tired and a rest would be awesome

Though nothing will drive them away

We can beat them, just for one day  

Heroes by David Bowie

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It seems to me that Mr. Bowie is referring to some of our worst MS symptoms.  They aren’t going anywhere any time soon.  But as long as we are not in an exacerbation, we may be able to beat them. At least, just for one day.  And calling us Heroes?  Thank you!  I think we MS’ers are heroes too!

And for those of you who think real classic rock only belongs to men, allow me to add I’ll Stand By You by the Pretenders, lead singer Chrissie Hynde.  To that song I say, “You’ll stand by me?  Thank goodness. Someone needs to. I could fall over at any time…”

One way or another, I’m gonna find ya

I’m gonna getcha, getcha, getcha, getcha

I’m gonna win ya…  

One Way or Another by Blondie

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I do not think it a stretch to assume that what Deborah Harry was looking for was a cure.

I could go on and on with more from both male and female rockers but that would involve pulling out all of my old albums and cassettes and spending hours and days in a joyful celebration of great music.  (If you don’t know what an album is than this blog is DEFINITELY not for you!)

While I would enjoy doing that, I think I have clearly made my point.  And now it is time to rest.  Oh yeah, I forget, rest also goes on the list of what comforts me when MS hits.

Speaking of hits, hey MS, Hit me with Your Best Shot, Pat Benetar style.

You tough cookie you…

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Image of guitar boy courtesy of AKARAKINGDOMS at FreeDigitalPhotos.net

Image of Elvis dude courtesy of iosphere at FreeDigitalPhotos.net

Image of headphone girl courtesy of iosphere at FreeDigitalPhotos,net

Radio image courtesy of Stuart Miles at FreeDigitalphotos.net

Images of the classic rocks stars I used in the blog I totally stole from internet profiles.  I’m hoping that because I love them so they won’t sue me….