An MS Doodle Dandy

Multiple Sclerosis patriotism

patriot girl

With the exception of my late teen/early 20’s years, I have never been much of a rebel.  I grew up with this intense need to please and so when someone tells me to do something, I do it.

I floss daily.

I get my car’s oil changed every 3500 miles.

I pay my taxes BEFORE April 15th.

I wait ten hours after eating before swimming.

About the only rebellious thing I do these days is consume raw cookie dough against the advice of both the raw dough packages and that of my older sister.   But I try to do that in the privacy of my own home so as not to offend anyone and I do feel bad about it, kind of.

This sense of doing the right thing carries over into being a good citizen, even when MS makes me feel wiped out and yucky.

I suppose if I was really a great citizen I would have skipped my brief rebel years and joined the military.  The only problem with that was the fact that I am total wimp and wouldn’t have lasted one day in boot camp.  So hats off and deep, deep gratitude to those brave folks who defend our country!

The least I can do to be a good citizen is to vote.  I understand how government works; I watched Schoolhouse Rock when I was kid.

schoolhousebill

(I’m still totally furious that Conjunction Junction beat out I’m Just a Bill for the number 1 spot in a recent special featuring all the episodes.  I demand to know who voted for that!)

So on primary day I put on my goody two shoes and headed off to the polls.  It didn’t matter that not many people bother to vote in the primaries.  I was going to because it’s a privilege and it’s my patriotic responsibility to honor that privilege.

I even did research on who to vote for.  And by research I mean I asked my very smart friends who have ideals similar to mine who they were voting for and then I voted for that person too.

voting2

(And I did watch a commercial or two- I try to take this voting thing seriously.)

Luckily, my town is small and since it was only a primary the polls weren’t too packed and I didn’t have to stand too long to cast my ballot. But my civic duty was not done for the week.  The next day I had jury duty.

Honestly, I wouldn’t mind serving on a jury. I actually think it would be interesting.  I just can’t imagine any lawyer would trust me on a jury with all of my cognitive issues and my extreme fatigue.   But being the good citizen that I am, I would let the court make that decision.  I was happy and honored to do what my government asked of me.

summons

The problem was, this was a lousy week to have to serve.  I had a lot going on and precious few non exhausted hours to do them in.  Of course, I didn’t know this would be the case when I got my notice, the notice that gives you the option of postponing jury duty.  Being on the road by 7:15 the morning of, standing in long lines to be processed, and waiting long hours in a hot stuffy courthouse was just not conducive to my life and my MS that week.

But it was what it was and I would just have to do my best.  I took comfort in the fact that I had one of those ‘call the day before’ notices.  Every time in the past when I received one of those, I never had to actually go in.  I would call the automated line the day before and an automated voice would tell me I was excused.  That’s what would happen with this jury service, it just had to.

When people who don’t have MS say they don’t understand ‘brain fog’ or ‘cognitive difficulties’ you are usually too fogged to explain it to them.  So allow me to do it for you.  The following is what brain fog looks like:

At 4PM on the day before my service I called the courthouse.  The instructions were clear- do not call even one minute before 4.  To be on the safe side, I waited until 4:02.

The automated voice thanked me for being a good citizen and calling.  Then it informed me that all jurors with groups numbered 0- 58 had to report.  I had been assigned group number 0060.  I had to go.

I was distressed.  I absolutely could not believe it.  How on Earth would I get through this crazy week with jury duty smack dab in the middle of it?

jurors-lounge

I thought perhaps I made a mistake.  I called again.  And again, was thanked for my service and told that all jurors in group numbers 0-58 had to report.  I was resigned to my patriotic fate.  I would just have to suck it up.

I postponed that evening’s shot so I wouldn’t face the horribly achy side effects during jury duty.

I went to bed super early.

I set two alarms to get up on time.

I stopped on the way to get some much needed caffeine.

And I stood with my burning legs in the long check in line, chatting with other potential jurors.

When it was my turn to hand in my summons, the court officer pointed out that I hadn’t needed to report at all.   WHAT??

Didn’t I call the automated number, he asked?

“I did.  It said all jurors with group numbers 0-58 had to report.  So at number 60 that means me, right?”

The frustrating thing about ‘cog fog’ is that once your brain makes a mistake, even a simple counting mistake, your brain then accepts that mistake as correct.  So even though I have known how to count since first grade and I called TWICE, I still screwed up.

I’m such a dedicated citizen that I showed up for jury duty when I didn’t even need to.

hot dogs

The court officer told me that my service was completed and kindly sent me on my way, probably noting my name and number for next time to tell the judge “this chick is way too dumb to serve, she can’t even count to 60.”

The good news was that I got back the badly needed day in the middle of the week.

The bad news was that I was so frustrated by my mistake that I wasted a lot of that day stressing over it.

Before I knew it the night passed, and when I turned on Facebook the next morning I was reminded of the date.

It was 9/11, a date no American will ever forget.

The date got me emotional.

It got me sad.

And then, it got me proud.  I started thinking about the amazing country I am lucky to live in.

amerflag

I started humming Yankee Doodle Dandy.

Here’s another way brain fog works, your mind starts wandering down seemingly insignificant paths for seemingly no apparent reason.

I looked up Yankee Doodle Dandy.

Did you know that doodle was actually an insult?  The phrase Doodle Dandy was meant to insult the earliest American patriots, doodle meaning dumb.  But they chose to adopt the phrase instead.

And so it was with me-MS dumb or not, I’m happy to be an MS Doodle Dandy; an MS Doodle Dandy who’s ready for jury duty whether she’s wanted or not.

PS  If you are humming Yankee Doodle right now than you are a true patriot for sure!

yankee doodle dandy

 

Seal of Approval

Multiple Sclerosis inspiration of the aquatic kind

approval seal

In last week’s blog, I talked about whales.  Today’s blog is about seals.  Well, a seal, one seal in particular.  Who knows, maybe next week I will blog about sharks.

Or dolphins.

Or maybe crabs.

Let’s hope that if I ever feel the need to blog about crabs is will be of the marine kind, not the cooties kind.

gray seal

But before I blog about a seal, (a gray harbor seal to be exact like the guy above and not a singer like the guy below,) I must first digress just a bit.

singer seal

I wouldn’t be much of an MS blogger if I didn’t enjoy MS blogs.  In the links section of my website I list some of the ones I regularly follow.  I highly recommend you check them out as long as you promise not to like any of them more than you like mine!

LOL!

(Not really LOL but I didn’t want to come off as too possessive so I hope the LOL tames that envious side.)

lol

On a couple of occasions I have had the chance to meet Rick Conti, a fellow blogger who blogs about MS, his faith and Haiti.  Rick really loves to write about Haiti.

His blog is called Limping into the Light.

It was his blog of last week however, that lead me to flop on my bed and hide my head under the pillows in deep shame.  His blog and the fact that I was really, really tired.

He blogged about the importance of exercise.  Read his post here-Step across the Line.

While I rested his blog stayed in my head, maybe because he was right.

Technically, I know about the importance of exercise.

cake-cupcake-exercise-funny-Favim.com-901211

I know that supposedly it will help me have more energy, (maybe if I exercised more often I could confirm that.)  When I started my own blog I talked a lot about my own ‘get fit’ plan that involved veggies, more water and exercise.

I have made more progress on the first two tasks than the last.

The thing is, there are exercises I enjoy, specifically beach walks and using my Wii Fit.

But in addition to the ‘being tired’ excuse there is the old and tired excuse of no time.

Which is exacerbated by MS robbing MS’er’s of precious time in the day.

See what I did there-using the word exacerbated?

Rick’s post continued to haunt me and began to destroy my excuses.

sealcartoon1

It was my favorite time of year.

It was a beautiful day.

I live only minutes away from one of the ten best beaches in the country.

(I’m not making that up- I’ve read it in travel magazines and on Dr. Beach’s website.)

It was time to get my butt and legs moving again and get back on the exercise bandwagon.

I headed to the beach, parked and used the stairway to walk down the sandy cliff.  That was a ton of exercise right there and I wasn’t even on the beach yet!

As I got down to the shore a seal popped up in front of me, very close-maybe only in water waist deep.

The surf was rocky and there are sharks in them waters so I wasn’t going in to splash around with the little guy. But I started walking to the left along the shore and the seal swam alongside me.

8-9-14_Harbor seal 2

He was doing most of his swimming beneath the surface but at least 5 different times he popped his head up, looked directly at me and then dived again.  Was it my imagination or was he following me?

It was definitely the same seal as he had distinct markings on his back. Maybe he was checking me out because he thought I was following him?  But since I’m drastically out of shape I was not keeping a steady pace and was stopping to rest a time or two (or three or four.)

Yet each time he popped up, he was right beside me.

Since I was enjoying this I walked pretty far.  (I always forget about the walk back.)   When I realized my seal friend wasn’t about to give me a ride to my car I knew I had to turn back.  But I didn’t want to lose him either.

As I was trying to decide what to do, my friend popped up again, looked right at me again and turned around himself. We started heading back together.

Gray-Seal-300x169

After a couple of feet, he reversed direction and I didn’t follow.  I just figured our visit was over and kept on my way.

As I walked I realized we had gotten pretty far from any other beach goers.  It was then that I saw a guy heading in the opposite direction, walking towards the isolated part of the beach. Was my seal friend trying to warn me to not be alone in that area with this strange guy or have I just watched too many crime shows?

Luckily, I may never know.

I got to the end of my walk, the area where there were lots of people and the stairs back to the parking lot.  Right before I turned to walk off the beach. my seal popped up again!!!! He looked at me, seemed to nod his approval and then started swimming off into deeper water, as if saying he would be on his way now.

8499889901_f81fc65d25_z

It was an awesome experience.  So much so that I came home, sat my butt down and wrote about it on Facebook.  Many people commented, calling my friend things like a guardian seal, a gift from the universe, an angel, a muse, a visit from beyond and lots of other cool things.

Perhaps my seal was none of those things.  Perhaps he was all of them.  Perhaps he was just a cool fluke-not the flounder fluke, I think my seal friend would eat that fluke, but fluke as in a chance occurrence.

I guess I can’t really be sure what the seal’s true intent was in keeping me company in my attempt to exercise and ‘get fit.’

But I know I enjoyed him.

And, if I’m being honest, no matter what, I need to look at his visit as something even bigger than me.  Something, or someone, besides Rick, saying “Get some damn exercise girl!”

And, unfortunately for my tired, busy self, there probably aren’t many excuses to get around that…

You are not alone

 

Thar She Goes…..

Multiple Sclerosis goes whale watching

whale0001

Forgive me please if this blog post gets a little off the multiple sclerosis topic.  There will be a connection, I promise.

Aren’t we with MS always connected to MS in some way?  The harder we try to disconnect to it the more connected we seem to be.

The above is a picture of a whale. No matter how fogged your brain fog may be today you probably didn’t need me to tell you that.  You probably opened my blog and “said what does a badly drawn picture of a whale have to do with multiple sclerosis?”

This image is the only thing I have ever been able to draw my whole life and thus was the consistent subject of all of my art projects in school.  Make something out of clay? Here’s a whale.  Carve something out of a bar of soap?  Here’s a whale.  Paint a picture on a plate to give your mom for mother’s day? Here’s a whale.

??????????????????????????????????????????????????????????????????????????????????

What is ironic is that I was blessed to grow up in a beautiful place right by the sea and have seen many a whale or two.  Sometimes we were able to see them right off the beach.

So you would think that I would know that the above picture looks nothing like a whale.  Not even a little bit.  Unless there’s a yet unidentified whale species, whales do not look like this.

Yet everyone recognizes my picture.

Just like MS, it makes no sense.

whalecartoon2

Last week my mom, sis and I decided to go whale watching, an activity we try to do every few years.  I was excited to go but also very nervous.  I didn’t share my concern with them as it was too humiliating and horrible to speak out loud.

See, the last time I was on a boat, I got a tiny bit sea-sick and I’ve been traumatized ever since.

I know for most people that’s not a big deal, but for me it was disturbing.  I come from a long line of Portuguese fishermen.  My grandfathers, my great grandfathers, their grandfathers and great grandfathers before that even, were all fishermen.  My father and uncle greatly disrupted the family legacy when they decided to become police officers instead.

grampa

By the time I was old enough to pick a career the fishing industry had started to decline locally.  Plus, I wasn’t sure I wanted to be around smelly fish all day and so, I too, took a different path.

But sea water runs through my veins, mixed with Portuguese red wine to get the blood pumping.

Thus, there was absolutely no excuse for getting a little sea sick.  When it happened, I could see my ancestors looking down on me with shame and I couldn’t take it.  What if I got sea sick again?

beachedwhalescartoon

And to make matters worse, this stupid MS has caused me to start having bouts of vertigo.  Physically, I would survive if I got sick on this trip but emotionally, I just couldn’t imagine.  And to add to the stressful mix, it was a choppy day with one hurricane or another somewhere off in the Atlantic churning up some extreme wave action.

I couldn’t speak my concerns for if I did, they would be real.  Yes, I survive multiple sclerosis but to not survive the motion of choppy waves on a big boat, it was too horrible to think about.

On deck the crew was warning people about the severity of the waves and was offering motion sickness pills.

pill_2788882b

I had a decision to make.  If I took a pill and was fine I wouldn’t know if it was the sea faring me who didn’t get sick or the result of the pill.  If I didn’t take one and got sick I would be forced to crawl under an embarrassing but steady rock.

I decided to take the freaking pill, mostly because I was impressed that the crew was offering them to people for free.  Nothing is ever free in the tourist industry but these little motion sickness pills were, probably because the crew didn’t want to have to clean up after the people who didn’t buy them.

After digesting the pill I sat on the bow- the front of the boat for you landlubbers and the place that takes the waves the hardest- and just enjoyed the sun.  And choppy was right.  The boat sped over the waves with a very rocky gait.

And I was fine!!!  I was so pleased by this that I decided to stand up.  The crew kept telling the passengers to hang on as the boat sped along and so I did.  Standing at the bow, with refreshing salty spray blasting at me-circa Leonardo and the ‘King of the World’ bit in Titanic, I hung on for dear life and enjoyed the ride.

titanic

Behind me, also clinging on for dear life was a little boy about five, who kept shouting “this is awesome!” with every crest we jumped.  And it was awesome.

Pill or no, there was something freeing about this wild ride.  I had to brace both of my legs and my arms held the rail in a death grip to keep from falling but it was fun.

I knew that MS would cause me to be in great pain the next day; that the nerves in my arms and legs would pay me back for this fun but those aches were tomorrow’s problem.

whalecalf

We did get in some great whale watching hanging out with a mom and her calf who, like a human child, was enjoying showing off and playing.  They even treated us to a double breach.

I only got to see the mom breach though. By the time I found out where I was supposed to look the calf’s breach was done but I did get to see momma humpback do her thing.

whale breach

That night, still on a high from my wild Atlantic ride, I took two Aleve before I went to bed, anticipating a very bad morning.

But when I woke up, I was fine again!!!

I think people who don’t have our chronic symptoms take feeling good for granted and I don’t blame them.  I used to do that too.

MS is constantly surprising me.  Just when I think there couldn’t possibly be any MS surprises left, it surprises me again.

In his own way, Todd does his part to save the whales.

But what an incredible experience to have MS surprise me in a good way with no pain where there should have been lots of pain.

I guess it just goes to show another reason why we can’t let MS hold us back.  With its unpredictable nature, we just might get some good surprises mixed in with the bad.

And did I avoid the seasickness because of the free motion sickness pill and avoid the pain because of two Aleve tablets?

Maybe, maybe not.

But I’m happily considering myself cured- at least of any possible traits that could disappoint my ancestors…

Maybe next week, I’ll go fishing…

ssyvonne

*******Fishing drawing by Nicole*******

********If you enjoyed today’s blog you may also enjoy my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.

Richard M. Cohen, NY Times bestselling author of Blindsided and Strong at the Broken Places, said that MS Madness! “combines defiance with humor, the secret weapon of the sick.”         Please check it out if you haven’t yet gotten the chance**********

cover-half

 

The Motley Two Go to Motley Crue

Multiple Sclerosis meets heavy metal

motley4

Ahhhh, there’s nothing like a good old summer head banging concert to remind you that you have multiple sclerosis.  Or that you are getting old.  I can’t tell which.

Too often the things that make me feel old could either be signs of old age or signs of MS.  Like the horror that arose when the radio station outside the concert doors asked me a Rolling Stones question and I GOT IT WRONG!!!

There is something completely inappropriate about that.  Yes, my MS brain does face cognitive challenges and memory loss issues but not remembering the answer to an awesome Stones trivia question??  I think it’s time to redo my MRI to find out what’s going on there…

londonlips

(In case you’re curious, the question was which Stones single was the first to hit #1 in the UK?  I said Come On and I was wrong.  If you are dying of curiosity and just can’t stand reading any further without knowing the correct answer then here you go- the first #1 in the UK was It’s All over Now.)

But I greatly digress-another symptom of both MS and old age.   The saying goes that “my MS is not your MS” and thus it would be wrong for me to say that heavy metal music is not conducive to those with multiple sclerosis.  Maybe some of my MS friends enjoy the extra amp power, screaming vocals and battling bass that make up this music genre.  Maybe you even find that the commotion that roars out of the intense drum kit comforts you.  If so, then you, my friend, are weird.

motley3

Yet, I found myself at an Alice Cooper/Motley Crue concert last week which is about the last place I pictured myself being on that Sunday evening.  I went because my dear friend from forever has loved Motley Crue since we were little kids playing air guitar on tennis rackets we didn’t know how to use.

Serena had never seen them live and since they claim this is their final tour, she bought two tickets.  With the craziness that comes from August, she couldn’t find any other metal heads available to go with her.

A concert is a concert and I AM a classic rock chick.   I decided to offer to go that way my friend would have company and could treat herself to a drink or two and I could be her designated driver.

Even though we’re close friends, Serena and I are very different.

She is wild and I tend to be calm.

She’s impulsive and I’m cautious.

She’s  shameless; I’m shy.

She’s spicy; I’m sweet.

birthdaybuddies

She’s crazy in a fun way; I’m crazy in an “annoying pain in the butt” way.

On paper we are as different as different can be.  Yet, we work.

We are a motley duo.

When we arrived at the venue, my first aging/MS frustration took place right in the parking lot.

I had more concert experience than Serena and in her excitement, and my ridiculous fastidiousness, we arrived super early.

Which would’ve been fine if I remembered tailgating.

How could I have completely forgotten that part of the rock concert experience?

I didn’t want to just sit in the car and so I ventured out to be social.  I talked to a family in the car next to us-their pre-teen daughter had grown up on 80’s hair bands.  The second frustration then occurred.

Without preparing for tailgating, I was standing outside of the car and standing for me is not very comfortable.  Plus, in front of our car was a pickup truck with 5 good looking guys hanging around it and they weren’t talking to me!

guys on truck

They weren’t rude and thanked me when I caught their fly away shopping bag, but that was it.  No flirtations.  No offer to sit on the bed of their truck.  No innocent conversation.

When had guys stopped wanting to talk to me?  It was depressing.

Some may say that perhaps I should have started talking to them and that by my being shy, they might not have known I was up for being social.  Serena could have fixed this issue in a heartbeat but still in the car, she was very busy.

She was worried about security not letting her make the most of her Motley Crue experience and was thus in the process of concealing important items in her bra.

To say that Serena is well endowed is like saying Motley Crue plays soft rock. (Serena’s favorite metal edged ballad Without You non withstanding.)  Endowed just doesn’t cut it.

jugs

She was working on a tip her daughter had given her,

“The good thing about having big boobs is that you can use them to hide stuff.”

By the time I gave up on visiting and got back in the car, Serena had managed to stuff 2 Vodka Citron nip bottles, a full pack of cigarettes and her camera all into her bra.

And you couldn’t tell!  Even me who has known her forever couldn’t see any evidence.

I panicked  when the female security officer said she was going to pat her down, but Serena didn’t even blink.  And then we were in.

There was a lot of standing,  Standing to get in.  Standing to get patted down.  Standing in the bathroom line which of course, was crucial!  Standing to get beverages…Standing to watch the bands.

motley2

At this particular arena when everyone stands, you can’t see a thing, not even on the close up screen which is so low to the stage it hardly seems to help.  It hurts to stand too long and so I had to periodically keep sitting.  I did my best but missed a lot. But I could guess what was going on by the rhythm of the butts seat dancing in front of me.

It wasn’t long before I had to down two Aleve tablets and pull out my bright pink ear plugs.  Why bright pink?  I was pleased to see other people with ear plugs but only mine were bright enough to light up the stadium on their own.

concert

At one point the band appeared on a smaller stage close to us and it was all I could do to stay upright as Serena jumped over me in her sprint to get to Vince Neil- think teen girls rushing the stage when the Beatles hit America.

How did this particular concert make my friend younger while it made me older?  Achy feet, achy legs, and achy ears.

At least I wasn’t whining about the temperature…..”I’m cold, can I borrow your sweater dear?”

But here’s the thing; though Motley Crue is not my kind of music, and not very MS friendly, in balancing things out, I did manage to have some fun.  I got to see flames shooting out Nikki Sixx’s guitar and Alice Cooper get his head chopped off in a guillotine, both of which were pretty cool.

alice

And I did manage to seat dance all through Smoking in the Boys Room, even if it wasn’t quite as energetic as I seat danced at the last Stones concert.

And most importantly, my friend loved it.

I can tell by the hundreds of videos of the concert she’s posted on Facebook.

(Hide your camera in your bra friends-it’s the only way.)

Funny how a Motley Crue concert, like life and even life with MS, can play out when you balance, seat dance every once in a while, and rely on friends.  Relying on friends is key.

motley5

When I texted my Stones friend about the epic fail trivia question she pointed out that Come On was the first Stones single to chart in the UK even though it didn’t make #1.

Which helped me to feel better about being old and missing that important answer. At least I was close.

Yes, MS or no, friends help keep us young

Especially the wild ones….

friendstalking

 

A Zombie Goes Down the MRI Tube

Are you an MS zombie too?

ms zombie

Earlier this week, someone posted the above picture in one of my Facebook MS groups.

(Sorry, fellow MS’er and poster.  I didn’t want to steal your pic but I really liked it and was desperate for a blog post idea.)

I laughed out loud at the picture and immediately commented that I loved it.  Some of my fellow MS friends agreed.

Some did not.

They respectfully brought up the fact that images like this one can diminish MS, appear to make fun of MS or give people a false sense of what we go through.

I had never thought of it this way and since I respect all opinions, and have a tendency to ponder, I sat with the opposing opinions for a while.  I sat with them right into the next afternoon as I was about to get my 25th MRI.

MRI_scanner

(Kidding- I haven’t had that many MRIs although it often feels like it.  If it really was my 25th I would be expecting a big present from the technologists.  I think the 25th anniversary is silver which the technologists could NOT give me as no metal is allowed in the MRI room.  Damn, MS got me again!)

Anyway, I did get a little surprise at my MRI place-I have no idea what the official name is- as they have added music to the MRI experience.

People had told me over and over that they have been able to listen to music during their MRIs but I didn’t believe them.  I figured they were just trying to make me jealous.

music

But apparently it’s true as I was able to listen to music during both days this past week when I was stuck in the tube.

In the room where they have you change into scrubs- mine were a pretty blue, I would have taken them for a present but they wouldn’t let me-there’s a list of the artists you can listen to amid the knocking and whirring of the machine.  They had about 30 artists to choose from including Johnny Cash, Andrea Bocelli, Abba, Beyonce and John Cougar Mellancamp.

I do have one complaint amid the musical praise- there was no Rolling Stones!  How could that be? A selection of music not including the Stones is like leaving a huge gaping hole in the list, like a missing puzzle piece.  Like a puzzle of the United States with the Texas piece lost. It just isn’t complete!

tom-petty-06

Anyway, I chose Tom Petty.  The technologists got me all settled and scrunched into the machine and then started the music.  The first song was one I had completely forgotten about, Zombie Zoo.

How perfect since zombies were on my mind.

You can make a big impression or

Go through life unseen

You might wind up restricted and over seventeen

It’s so hard to be careful, so easy to be led

Somewhere beyond the pavement

You’ll find the living dead

Dancing at the zombie zoo

Painted in a corner and all you wanna do is dance down at the zombie zoo

Tom Petty

Perhaps you’re thinking that the above song has absolutely NOTHING to do with multiple sclerosis.  You would be right.  Unless you happen to be in an MRI tube already thinking about zombies.   Then it all makes perfect sense.

Maybe the zombie zoo is an MS mixer or fundraiser.

zombie sign

And we MS’ers really can make a big impression.

And it is so hard to be careful when you have MS.  Between fatigue, brain fog, diminished vision, and balance trouble it is very, very hard to be careful.   Sometimes you do want to be led.  Just sometimes.  Other times being led can annoy the crap out of you.

Zombie Zoo stayed in my head while other Tom Petty songs played.  Don’t even mention Free Fallin- that’s an MS song for sure.

Right about the time they rolled me out of the tube to add dye to my veins that would light up the MS activity in my body sharper than the Vegas strip- instead of flashing Penn and Teller, $9.99 buffet, Texas Hold’Em, these lights in your body scream- multiple sclerosis, t1 lesion, t2 lesion, and my favorite- MS was here….

zombie girl

To get my mind off zombies I asked them to change the music to Pink.  I forgot why I love Pink.  I love her because her music gives me energy and makes me want to dance like a crazy person- not a good idea when you are stuck in a tube and the technologists are yelling at you to stay still.

So what could I do? I went back to thinking about zombies and the Facebook zombie picture.

I decided that to each his own.  If some of my fellow MS’ers don’t like the picture, that’s ok.  But I do.  Here’s why.

Zombies are frightening but not real.  MS is frightening and it’s very real, frighteningly real.

If I want to compare the two by my shuffling gait, my extreme brain fog, or my incredible exhaustion, and if by comparing the two it makes me laugh, then so be it.  Life is too short and when we can grab a laugh, awesome.

soup

I guess it’s like when I hear a joke about my Portuguese ancestry.   I will likely laugh out loud. Unless someone who’s not Portuguese is telling it.  Then I’ll probably get mad and pour a pot of Portuguese soup over their head.

(I would never actually do that.  It would be a waste of some good stuff.)

Back in my 20’s I went to a Halloween party dressed as a black magic woman.  The party was scary.  The house where it was thrown was scary.   This very scary guy came up to me and said “you really shouldn’t mess with things you don’t understand.”  Since he said it in a super creepy way, I grabbed my friends and we bolted to the nearest dive bar for safety.

blackmagicwoman0001

So I don’t mean to tempt fate by talking about zombies.  If the zombie apocalypse ever does happen I will be the first one hiding and screaming.

But sometimes, just sometimes, comparing my frightening illness to a make believe zombie is funny.

And it makes me feel better too.

I hope it’s the same for you.

And if so, perhaps I’ll see you- dancing at the zombie zoo….

zombie zoo

Can You Ear Me Now?

Multiple Sclerosis is within earshot

 

ear1

I don’t mean to open my blog with an annoying reminder of a Verizon commercial that will stay with you for days and have you, my dear readers, walking around and constantly asking people, “Can you hear me now?  Can you hear me now?”

Truly, I don’t.

I love and treasure my readers and want to keep them around for as long as possible.

It’s just that when a blog idea hits, sometimes an obnoxious line comes with it and the only way to get rid of it is to share it with all of you.  After all, we’re all in the MS cluster together aren’t we?

friends

And so this week’s blog is about weird ear stuff.

I have mentioned my weird ear noises before and have even tried to come up with causes for them.

In my book I talk about them existing due to alien experiments and on a former blog I attributed them to a ghost train, (All Aboard.)

But like with many things MS, the weird ear sounds have gone away, come back, changed, gotten worse, gotten better and overall, bug the heck out of me.

I have even blamed them on bugs.

fireworks1

Earlier this summer my ear noises came back and they sounded like fireworks.   Since it happened to be the weekend of the Fourth of July, it’s possible that they actually were fireworks.  Since I live in a tourist area, the popping sounds my ear randomly hears could be visitors setting off more fireworks.

(It would be nice if I was hearing fireworks that I might actually see some fireworks- add some excitement to my mostly boring evenings.)

Then the noises changed again.  Now they sound like microwave popcorn popping in my ear, which would be great if I got popcorn out of the deal.

The most frequent time these sounds occur is on one of my many nocturnal shuffles to the bathroom.  When I am done and lie back down in my bed, all I hear is pop, long pause, pop, short pause, pop, pop, shorter pause, pop, pop, pop, etc.

orville

This just makes me want to eat popcorn.  Before I know it, all I’m thinking about is my buddy Orville Redenbacher and it’s all I can do not to get up, pee again, get dressed, and grab my car keys in search of a 24 hour convenience store.

Luckily, the MS fatigue symptom is greater than any old regular or weird MS symptom, and I am fast asleep before I’m turning on my computer to Google which 7/11 in a 20 mile radius may actually be open past 11.

These ear noises are more fascinating than disturbing and I tend to forget about them until the next time they occur and I start considering going out in the middle of the night for popcorn.  Maybe I should just buy some to have on hand, except I’m trying to eat healthy.  Is microwave popcorn healthy?  It’s made from corn…

popcorn

But when the ear noises started combining with a sporadic tiny ear ache, I thought I should get them checked out.  I did the responsible thing.  I hit Google.  I could find no description of my particular ear sounds.

What I did find out was that I’m special.  If my ear noises are MS related, I am in a small category (4.35% of the MS population according to About.com,) that has this particular symptom.

No regular old multiple sclerosis for me- give me even more unusual stuff in this unusual illness.

And according to the web, none of the other 4.35% of MS’ers are hearing microwave popcorn in their ears.

The web said I should talk to my doctor to rule out other issues before I blame MS.  Those issues are wax in ears (gross but have had that checked and am proud to state that I am wax free,) or another, new illness.   The web mentioned Meniere’s Disease, (many ears disease?)

manyears

So what does responsible me do with that information?  I look up Meniere’s Disease which I am now convinced I have.  How could I not have it?  It consists of two the symptoms related to my MS- vertigo (fuzzy brains which is very different from foggy brains because it makes my brains fuzzy, not foggy,) and balance problems (klutziness to the extreme.)  It also consists of two other symptoms I get from time to time; a feeling of fullness in the ear,(ie, minor ear ache,) and minor hearing difficulties, (ie. Can you ear me now?)

computerdude

It’s taken me almost four years to learn how to spell the sclerosis in multiple sclerosis and now I may need to learn to spell Meniere’s Disease?

Oh I know what you’re worried about dear readers.  You’re worried that I may try to diagnosis myself after a quick web check of this latest medical issue.  I would never do that.

I spent two hours on the web before I came up with my diagnosis.

And, yes, I suppose I will bring it up to my doctor at my next appointment in three weeks.  I just have to remember to add it to the list of other things I need to tell her.

list dude

I have about four lists already and the reason why there isn’t just one master list is because my foggy brain (not fuzzy- I can’t even think when I am dealing with fuzzy brains) can never remember where I put my old lists.

So, to prepare for my appointment I have made a new list-

  1.  Tell doctor about my new self proclaimed diagnosis
  2. Find old lists
  3. Learn how to spell many ears disease…..

emotiear

 

Brain Cog Fog Gets an Evaluation

A little peek at a little MS Madness!

the fog

As the writer I claim to be, I could lie and make up some brilliant excuse as to why today’s blog is not as creative as I usually try to make it.

 I could write that I am in Paris being wined and dined by a handsome stranger.

Or I could write that I am at Keith Richards’ Jamaican villa, lying in a hammock and looking at the crystal blue water while he writes new music nearby.

jamaica keith

Maybe, I might scribe, I was abducted by aliens, for real this time, and they haven’t brought me back to Earth yet.

But the truth of the matter is that I am just tired; really tired. I am so tired, that miraculously, MS hasn’t given me anything new to write about this week.

And, if truth be told, I am still trying to sell a book or two and thought maybe today, I might just entice you with a look at an excerpt from MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.

cover-half

Since my brain is so tired, I thought the excerpt I would share should appropriately be from a chapter called Cognitive/Schmognitive which details brain cog fog and specifically, my first neuropsychological evaluation.

(Try saying that five times fast.  If you can, you don’t need a neuropsychological evaluation.)

If you like this excerpt and would like to get your own copy, you can buy one where all other amazing literary tomes are sold; except maybe mega brick and mortar stores as they don’t quite love MS Madness yet.  But maybe if you request it……

bookstore

Thank you friends!   And remember, a portion of the proceeds from each sale of MS Madness goes to non-profit agencies searching for a cure for multiple sclerosis or non-profit agencies that help those living with chronic illness.

Have a restful weekend.

takingtest

“…….The doctor introduced me to her assistant and we started the process. After some brief questions she showed me a drawing and asked me to write in paragraph form what I saw. I thought this was likely a simple exercise to show off my most basic grammar and spelling skills. I had just told her the only career path I could conceive of was becoming a writer. I had to prove that it was at least a possibility. I asked how much time I had. She told me to take all the time I wanted. Did that mean the entire four hours? I think she was expecting a basic description of woman doing this, child doing that, etc. But I saw a whole story in the drawing and wrote it, complete with a dramatic subplot and a commentary on the decline of a simple moral compass in current technology dependent middle class America. Eventually the doctor asked me to stop. Her report on the testing noted: “narrative handwriting sample was creative in content.” Perhaps I should have asked for it back to see if I could publish it. I needed the money, after all.

money lady

From there, things went downhill. Her assistant took me into this tiny room where she proceeded to have me memorize, spell, associate words, disassociate words, dissect words, add, subtract, remember, repeat and any other thing you can possibly do to someone’s brain. Slowly my head began to expand. Just remembering the test is bringing the awful headache back. The final report shows I tested pretty well but it didn’t seem so at the time. At one point, I could not tell the assistant the name of our president. Instead, I said, ‘I can’t believe this, I love him. I voted for him. I can see him in front of me and can see his family. He has a weird name but is a good guy.’ My Republican friends said that this memory loss was because my brain was blocking out disturbing thoughts.

doctor

The part of the test I did the worst on was identifying something missing from a picture. Maybe it was the artist in me altering common perceptions, but they would show me a picture and ask me what was left out. I couldn’t tell them and would say, ‘nothing, everything is there.’ The assistant would insist something was definitely missing. Then, to make her happy, I would make something up. If it was a picture of a puppy, I would say a little boy. Every puppy needs a little boy to hang out with. And the assistant would begin writing in her notepad. One picture was of a leaf, what could possibly be missing from a picture of a leaf? A leaf was a leaf. But the assistant would state ‘No, something was definitely missing,’ and we would start all over again.

puppyboy

One picture was of a mother and son walking on the beach. I grew up on Cape Cod. If something was missing from a beach picture I should have known what it was. I kept guessing—a fishing boat, tourists, whales, a keg of beer, sandcastles, nude sunbathers, seaweed, litter, suntan lotion, a cooler, shells, keep off the dunes signs, Jaws, park rangers. The assistant scribbled away………………….

jaws2

Three weeks later the doctor called and said she had the test results. She told me the MS had caused my brain to slow down a bit. She compared it to her elderly father who didn’t have dementia, but whom she had to speak to slowly so that he would better understand her when she was telling him something. She said my brain was like that, an old man’s. She also told me that I should accept that my multi-tasking skills, skills I once prided myself on, were pretty much shot. I would now have to realize it might take me longer to process things, especially since the test was done in a controlled environment. Exhaustion, stress, and noise would likely increase my symptoms. She recommended that I visit a vocational specialist, whatever that was, and that I only work part time. She wouldn’t tell me what was missing from the beach picture as she said someday I may need to do the test again.

old man

The breakdown of the test results seemed to be that cognitively, I wasn’t a total mess—I was just an old man. Good to know.”

*********Super top secret information just for you- more excerpts from MS Madness! are included in the BOOK tab of this website*******************

 

Have you already Heard the One about the One Ms’er who Drove the Other MS’er to the Neurologist?

A repeat of the wacky multiple sclerosis road trip

road trip

The last couple of weeks in July have been very busy and my already foggy brain has been too foggy to come up with something new.  The foggy weather hasn’t helped either.  Please accept this repeat blog post today instead of some creatively brilliant musing that I have yet to create…

Happy first day of August!

summer

My sister Laurie was not feeling well.  Our neurologist was able to squeeze her into an emergency appointment. Since our neurologist does not practice in a concrete, congested, horribly difficult to navigate city, I was able to drive her there.

But before we began the one hour and 45 minute ride, I had an important errand to do.  I needed to get rid of my stinky trash, and stopping at the trash bin in my mother’s apartment complex seemed the best place to dispose of my refuse.

I pulled alongside the bin, and while simultaneously talking to Laurie and hitting the button on the floor to open the trunk where the stinky trashy was stored, I proceeded to step out of the car.

What I forgot was that the car was still in drive.  I turned to walk towards the trunk and the car moved forward, edging dangerously close to a slope with a large tree at the bottom.

My brilliant way of trying to rescue the situation was by grabbing the door frame of the car and trying to pull it backwards.  Since I’m not Superman, it didn’t work.

Superman-btbatb

Luckily, Laurie’s brain fog wasn’t so foggy (apparently mine was worse in that second) to rescue the situation.  She managed to pull the gearshift into park and the car stopped.

Maybe my muscles pulling on the car also helped?  I would like to think so.

This was the start of our road trip.

With my sister, my car, and an innocent tree saved by Laurie’s own problematic hand, we ventured up the highway.  At the next stop, a rest area plaza, we had a little trouble with the door that said for ATM use only.  It was closer to the bathrooms- should we dare use it if we didn’t need to use the ATM?  What if we pretended to use the ATM and then say we changed our minds if we got caught?

Since I had already broken some rules with illegal trash dumping, and Laurie was tired, she decided to be a rebel and use the door.  Luckily, no alarms went off.

coffee-cup1

We ventured on as Laurie digested her coffee and cookie.  I was proud that I stuck to my bottled water.  It was actually pretty easy; the cookie she bought was oatmeal raisin- I mean really, what’s the point?

While driving and discussing the many various frustrations MS has brought into our lives, we got lost.  Really lost.

Even though I have been to this doctor’s office several times, I was talking so much that I forgot you need to take an exit off of the highway.  Seemed I expected the office to magically appear in front of me while I described frustration #417.

Actually, the fact that the office didn’t magically appear WAS frustration #417.

wrong way

We were dangerously close to a city when I realized the problem.  I definitely did not want to be behind the wheel in a city.

A couple of fast, curvy exit ramps later, with Laurie clinging to what she liked to call the ‘Oh crap bar,’ and a confusing call to the doctor, we were back on track, miraculously arriving only two minutes late.

Walking in, my sister announced that she had to use the restroom, RIGHT NOW.  She would have to go before she even checked in.  Then she seriously said, “my bladder issues are really starting to piss me off.”

women-bathroom

I was surprised.  I didn’t know she had bladder issues.   I was also upset.  That comment was really funny- how come I didn’t think of it?  We giggled which didn’t help her bladder problem.

She saw our doctor and I was even more annoyed that she didn’t get poked with a safety pin like I do when I visit him.  He stepped out of the examination room to look at her MRI’s and it was all I could do not to grab one of the pins and poke her myself- it only seemed fair.

She joked with the doctor about finally being able to wear stilettos once she starts the new walking pill, Ampyra.  We all laughed.   Laurie and I laughed because neither of us has ever been able to wear stilettos, MS or not.  I don’t know what our neurologist was laughing at.

funny bones

The good news, her concerns were resolved and luckily not as severe as we feared.

Relieved, exhausted and hungry, our next stop was for lunch.  As the driver, I got to pick.  I chose a fast food place- so much for not picking up a Coolatta and a cookie at our earlier stop.

We made it through lunch despite my clumsy left hand flinging a french fry across the restaurant and her having a little trouble with the lettuce in her chicken sandwich; vegetables, the trouble always comes from vegetables.

We got on our way again and we made it safely home.

And in our own homes, we each passed out; resting from our road trip and storing up energy for the next one.

Maybe to the grocery store sometime next week…

thighs

 

 

 

H2O a Go, Go

Multiple Sclerosis Advice

???????????????????????????????????????????????????????????????????????

You may think today’s blog is another one that has me whining about my obnoxious bladder.

Well, it’s not.

Although, to paraphrase my sister Laurie, “my bladder issues do still piss me off!”

When you tell people you have a chronic illness you find yourself on the receiving end of a ton of unsolicited advice. Most of that advice comes from well meaning people.  Because they are well meaning, the polite you grins and bears it even when it’s useless, clueless and ridiculous.

“Just tell yourself, ‘I won’t get stressed, I won’t get stressed…’”

“Breathe…”

“You need to get more sleep.  Oh, you got nine and a half hours?  You must be sleeping too much…”

“You may not have MS, it could just be an allergy…”

The thing is, sometimes you may actually get something helpful out of the advice so it’s worth listening too.  (Yes, that advice could be construed as unsolicited advice directly from me.)

beehive

Imagine my shock when years after someone told me I should eat bee pollen, I discovered that bees are actually helpful and if we don’t take better care of them, they are going to go away and then the world could end.

As someone who has written a book about multiple sclerosis that I am desperately trying to sell to the masses, (MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis in case you’ve missed it the 10, 000 times I have mentioned it before-more unsolicted advice-buy, buy, buy…) I am even more open to advice.  I travel my area talking about my book and people want to tell me things that they have heard might possibly be helpful.  And again, that is a great thing.  I appreciate it, I really do.

But every once in a while, not so much.

Please allow me to briefly digress. I swear there will be a point to this digression; I think.

I am very proud that after many people suggested that maybe I didn’t have MS but actually had aspartame poisoning, I looked into it and discovered that they were right.  Well, not really.

My excellent neurologist says I still have MS and I believe him.  But I looked up aspartame and discovered it really is bad for you and sure wasn’t helping things.  I switched from artificial sweetener to Truvia, an expensive alternate, and completely gave up my beloved fountain diet cokes in favor of water.

drink-more-water-cartoon

I drink water all the time now.  Plain water; no enhanced sugary flavors.  I tried diet coke again once and didn’t even like it anymore.  I thought I was doing great.

At one speaking event I foolishly forgot to pick up some bottled water. A friend offered to get me some and came back with SmartWater which I hadn’t seen before but thought would be great as maybe it would help me be smart.

After the presentations by many authors, a woman to approached me.  She asked if she could tell me something and of course, I agreed, hoping she was going to tell me that my book looked amazing and she couldn’t wait to buy it.  Instead she informed me that the SmartWater I was drinking really wasn’t smart at all.  I was quick to appease.

“Oh really?  I’ve never drunk it before.  My friend got it.  Is it filled with sugary additives or something?”

“Oh, I don’t know,” she said.

Hmmmm……

It was a chilly day in May and she was wearing socks with sandals.  I know it’s not right to stereotype but my first thought was the bottle; she must be Earthy Crunchy green and worried about the planet.

earth

“Oh, don’t worry, I recycle- I won’t throw away the bottle.”

That wasn’t a lie.  I really do recycle but turns out that isn’t enough anymore.  Don’t even get me started about the dangers of water bottles, that’s a whole other blog post.

“That’s not it either,” she replied.

Turns out, what she was referring too was the alkaline content in bottled water and how it does something really bad that could be making my MS worse or does something really good that could make my MS go away.  I couldn’t figure out which.  The only thing I know about alkaline has to do with batteries.

Maybe I should ask the Energizer bunny what this woman was talking about.

energizer-bunny-page

Then she mentioned something about acid levels, which was really upsetting as I’ve never done acid in my life-not even in college.

Here I thought I was being so healthy!!!!   No diet coke for me!  No juice at this event-too much sugar.  No milk- now some say milk is bad.  No lemonade or even iced tea.  No beer or margaritas either.    No chemicals, poisons, GMO’s, alcohol or aspartame.  I was drinking what I thought I was supposed to be drinking, what everyone told me I was supposed to be drinking.

This woman then went on a 20 minute scientific diatribe while I stood there dumbly watching the custodian fold the chairs and empty the sods cups.    I couldn’t figure out science even before MS attacked my brain. I heard the word alkaline a lot and acidic.  And inflammation, that one was kind of familiar.  But I had absolutely no clue what she was talking about.

I’m all about good advice and being polite though so I stopped trying to figure her theory out and just figured when she was done, she would tell me what I should do stop the water epidemic.  She finally stopped talking and so I asked her what I should do? How do I solve this problem of bottled water that I didn’t know I had.

I was eager for a solution that would circumvent me going back to school to take a science class.  I didn’t even know what kind of science this was.   Biology?  Chemistry?  Earth Science?  Yes, water lives on the earth so it must be an Earth Sciences class I should take to sort this out.

woman advice

Her response to my question of what should I do now that I know bottled water can be bad, was straightforward.

“Oh, I don’t know.”

What??

See friends, I swear this is all true; you can’t make this stuff up with or without an MS brain.

I pressed her a little and she told me that she had just moved to the area from California which had the best water in the world and where she knew which bottled water was safe to drink.  Now that she was in MA, she had no idea.

I pressed her more and she then told me her best advice was to buy litmus strips (what?) and then take them to all of the Whole Foods, Trader Joe’s and health food stores in my area where I should buy up all the bottled water they had and then bring it home to test each of them with the Litmus strips and then only drink the bottled water that tested well.

For one month.

Then, as companies can change their manufacturing processes and their water sources, I should repeat this test every month for infinity to make sure I was constantly getting the best water.

It was at this point that I began to peek around the corner of the empty room looking for the Candid Camera dude.  He never showed up.

candidcamera

I was more confused than ever.

About the only thing that seemed clear after the woman and I finally said goodbye was that there must have been something in her water.

There just had to be…

Multiple Sclerosis and the Ugly Truth

What’s so bad about a little fatigue?

babytired

“I am sick and tired of being sick and tired….”

I didn’t write the quote above.  Nor did I credit it to anyone as I am not sure who to credit it to. I have heard it so much and seen it so often I think it could be attributed to hundreds, no thousands of folks, especially if those folks have multiple sclerosis.

(To the real, original quote author, we MS’ers are taking over your quote; we’ve earned it.  Perhaps you should go take a nap.)

Here are some other quotes about fatigue that I find interesting and can credit to its authors.  At least, I think I can.

“Sometimes it takes me more than 8 hours to get nothing done.”  Snarkecards

“Going out with other adults is 90% explaining to each other how tired everyone is.”  Also Snarkecards

“We’re all tired.  Yesterday my pee was so tired I had to wake it up with a shot of whiskey before it would come out.”  Alan Bates in the movie The Rose

the rose

Ok, the last quote has nothing to do with MS fatigue; unless Bette Midler’s character in The Rose had MS.  She certainly had a suitcase full of drugs to rival that of most of the MS’ers I know.

A recent poll of my fellow MS’ers on a Facebook page asked what we missed most about our Pre-MS life.  Many said energy.

The National MS Society’s webpage estimates that 2.3 million people have multiple sclerosis.  They also estimate that number is low.  And they estimated that 80% of those people are dealing with chronic fatigue as a result of their MS.

What does that really mean?

It means there are a ton of exceptionally tired people existing on the planet.

And the brainiacs say the zombie apocalypse isn’t real!

zombies

Did you know that the word ‘collapse’ is a synonym of the word ‘fatigue?’  I forgot where I found that but I swear, I did see it somewhere.  Here are some other synonyms of ‘fatigue’- weariness, lethargy, and washed out, just to name a few of my favorites.

The Free Dictionary by Farlex defines fatigue as “the weakening or failure of a material resulting from prolonged stress.”  For MS’ers, we are that material.

The point of this particular blog post is for me to show an example of what MS fatigue looks like in my world.

“I’m so tired just the thought of brushing my teeth makes me want to start sobbing.”  Yvonne deSousa

I wrote that one. I really did.

“The fatigue is like the fatigue and over all body aches you get when you have the flu, multiplied by 1000.”   Me      I wrote that one too.

Recently I was trying to explain to my mom the difficulty of consuming a wholesome, healthy snack, an apple. What could be better for you than an apple?  Of course, the first thing you have to do is wash it  carefully due to all the pesticides that are used now.   Then you eat it.  It should be that simple.

But for me, it’s not.

denial

Every time I bite an apple, I take a huge bite out of the inside of my cheek; no longer healthy unless juice from the apple dissolving into an open, bloody wound is nutritious.  So I bought an apple corer figuring that breaking the apple into smaller pieces might save me from myself.  Except the apple corer was hard for my already weak hands to maneuver and to find the strength to cut through the apple completely.

My mom suggested that I peel the apple first.  This involves my super tired hands grabbing a sharp instrument to peel away the healthy apple skin before then coring the apple.  Suddenly an easy snack has used up the energy it would take for most people to prepare a four course dinner and all I want to do is rest.

And the apple itself is now chunks of something brown and rotten as all of this took so long for me to accomplish that the apple has given up hope and become tired too.

Many people without MS say why don’t you get enough sleep?

The irony is that sleeping or not sleeping has absolutely no bearing on this type of fatigue.

Other people may ask, “what’s the big deal about fatigue? Lots of people are tired and they just have to deal with it.”

moving

And so do MS’ers, but it’s not always pretty.

Every year my church holds a special mass for fishermen to celebrate our fishing heritage and to pray for safety and good fortune.  I love this mass and it’s my favorite of the year- even more so than Christmas or Easter.  The church fills up, and yes, even more so than Christmas or Easter.

The altar is decorated and the Bishop of our diocese, or some other mucky muck on his behalf, celebrates the service.  My friend and I carry the gifts to the altar.

For non-Catholics the gifts are the unconsecrated bread and wine, not a box from Tiffany’s or an ipad.

This year I tried to balance as well as possible but the mass follows lots of other celebrating and those celebrations took place among the extreme heat and humidity of early summer.   I went to bed early and did my best to rest up.   It was very important to be non-fatigued since when MS makes you fatigued, everything else ratchets up considerably; your weakness, your clumsiness, your cognitive difficulties, your balance issues, your poor vision, etc.

sleepyhead

Whatever MS makes difficult for you, it makes even more difficult if you have even the slightest bit of fatigue.  This was worrisome as far be it from me to drop the soon to be blood of Christ on the altar before I am able to hand it off to the priest.

If he drops it, well then that’s his problem.

I pulled into the lot of my church and was rudely greeted by a fellow parishioner instructing me where to park.  I was not able to park in the spot he recommended (long story,) and politely tried to explain this to him.

Seems he took his parking duties way too seriously and began to argue.  This caught the attention of another parishioner and a small scene ensued and my sensitive feathers got ruffled.

Had this situation happened before MS  I would have,

  1. Taken the high road by ignoring the parking dictator and felt lousy about it at the time but better for it later

Or,

2.  Used some non-Christian language to humiliate him immensely,                                     causing me to feel great at the time but lousy later.

What my MS fatigue caused me to do instead was cry.

Yes, an embarrassing, inappropriate, obnoxious, ugly cry.

crying girl

I tried to get to the bathroom to pull myself together but there was a long line.  I tried to turn away from people to pull myself together but people saw me anyway.  The more people asked me what was wrong, the harder I cried.  When, through my sobs, I could only say that the problem was a minor parking dispute and not the end of the world as we knew it or a zombie apocalypse, they backed away.

I’m sure they were thinking ‘drama queen,’ ‘cry baby,’ and ‘lousy make up job’ as my mascara was now all over my face.

If I had my way I WOULD NOT have had a breakdown during my favorite religious event of the year.

It was not my choice to lose it over something completely minor in the grand scheme of life with or without multiple sclerosis.  I could neither predict the breakdown nor could I blame multiple sclerosis directly for it.

anger face

I COULD blame the parking guy.

But I am supposed to be working on forgiveness, peace, love and all that other better human, better spirit stuff.

I can however, blame multiple sclerosis fatigue for making everything about my mind, body and psyche weak, for taking over all control of my senses, for once again doing what it was going to do despite all my best efforts to stop it.

And of course, there’s no way to explain this to everyone who saw my breakdown, that it was really MS fatigue’s fault, unless I happen to put it in a blog post….

That is the ugly truth of MS and the horrible fatigue that comes with it.  It is frustrating, uncontrollable and, yes, let’s face it, ugly.

jesus image

Luckily for me, the visiting priestly mucky muck gave a funny homily and humor always cheers me up.

And God is good; as weak as I was I didn’t drop the altar gifts.

With the makeup fail caused by tears I did look like a zombie but hey, God loves us all right?

I choose to believe that includes zombies…

kidzombie

 

 

Retired cartoon and Denial cartoon are both courtesy of A World Free of MS

The Moving cartoon courtesy of Sue Fitzmaurice