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….

 

 

 

Super Blah!

A multiple sclerosis alter ego

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Spiderman had the Green Goblin.  Batman had the Joker.   Is it possible to have a super hero without also having a super villain?

This thought occurred to me recently when I was reading an awesome MS blog by an awesome MS blogger, Melissa Cook.  She blogs about life with MS on MSsymptoms.me

In the particular post I was reading she explained a multiple sclerosis phenomenon that I could totally relate to.  Her post is titled Super Powers to the Rescue and it describes how in times of crisis or intense stress, we seem to discover amazing energy sources and strength we never knew we had.  Activities that would normally do us MS’ers in, we seem to ace just when we should be feeling our worst

Personal case in point, just last week I left town for a few days to say goodbye to a beloved uncle, my family’s patriarch.

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(Speaking of super powers, this loving man never missed one day of work in his entire life and was married for 60 years- that is some super strength right there.)

Amid the funeral arrangements, grief, worry and drama that can happen during a difficult time, I did ok.  Miraculously ok since I had forgotten to pack my energy inducing pharmaceuticals.  Suddenly I was able to stand for longer periods than I normally would be able to.  I was operating on far less rest than I usually would get.  I remembered things I would normally forget and understood things I normally wouldn’t understand.

I saw many friends and relatives I don’t see often and they remarked on how well I seemed to be holding up.  But what they didn’t see was the debilitating crash that came after, the days I spent in a major fatigue induced emotional hangover.  In the aftermath everything that could possibly ache ached and everything that I could possibly forget was forgotten.

Thankfully I had read Melissa’s blog and so somewhere in the cognitively limited resources of my brain, I had an inkling of what was going on with me.

Ah, MS, it taketh away.

It taketh away a lot.

But sometimes, when you need it most, it giveth too. Sometimes it can giveth the super powers you are desperately needing when you might desperately need them.

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This understanding made me think of super heroes which made me think of villains.  I decided we needed a name for the villain that shows up in the aftermath of these super powers.  The evil arch-nemesis that does everything it can to rob us of our personal super powers.

Hence, I created Super Blah!

This is the alter ego we unwittingly transform into when MS decides to decimate the super powers it recently bestowed.

Super Blah!’s chief crime is theft- theft of energy, theft of thought, theft of concentration, theft of all the things one needs to function in the aftermath of a super power moment.  In addition to theft, Super Blah! is also responsible for pain, and an increase of all of your worst MS symptoms-for me that meant that my balance and bladder became as obnoxious as ever.

You can’t hide from Super Blah!-  though you can anticipate its arrival.  You will likely see Super Blah! right after you have surprised yourself by feeling good.

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I think the best example of how Super Blah! shows up lies in comparing him to the Incredible Hulk.  One minute Dr. Banner was just doing his own thing and then he would get mad and suddenly he turned into the Hulk.  The difference is that the Hulk was good.  His enemy was Mr. McGee.

“Mr. McGee, don’t make me angry.  You wouldn’t like me when I’m angry.”

Understanding the role of Super Blah! in my life is quite disturbing.  How do I stop this wicked villain in its tracks? I’m not Wonder Woman.  When my super powers are at their best I’m barely Mighty Mouse.

I often do extensive research for both my health and my blog and so I began to investigate what might actually destroy Super Blahs!’s evil powers.  I discovered that I may need super tools. Wonder Woman uses her lasso.  Maybe I could use my drugs?

I learned that my MS medications are somewhat helpful but to combat Super Blah! I needed something bigger, something greater than multiple sclerosis itself, the source of Super Blah!’s power.

Then my research led me to discover something I had never heard before. It turns out that Superman recharges his power with solar energy.  When he’s feeling run down, in need of a super boost, Superman turns to the sun.  With a high dose of the sun’s powerful, Vitamin D filled rays, Superman is back on track!

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Wouldn’t you know it, one of my drugs is super strong Vitamin D!

So I’m going to take a lesson from some of my favorite super heroes and get my strength back.  I will defeat Super Blah!

Maybe not today, maybe not this week.  But I will get him eventually.

Turns out I’m really not Wonder Woman or Mighty Mouse.

I am Superman…

PS If this particular blog post seems super blah it is because Super Blah! was hanging around when I was writing it- blame him! Or her. Or whatever Super Blah! is…

In honor of National MS Awareness Month let’s share some Super Blah! info readers.

What does Super Blah! look like in your MS world??

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Images of Batman and Spiderman in their younger years courtesy of their mom, Kady Green

Image of my uncle’s hardworking hands courtesy of Kristine Soares Photography

Flying super hero image courtesy of vectorolie at FreeDigitalPhotos.net

Good/Evil sign image courtesy of Stuart Miles at FreeDigitalPhotos.net

Sun super hero image courtesy of iospere at FreeDigitalPhotos.net

 

We ARE New Englanders

An MS blog that has nothing to do with MS

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Hi friends

I had a ton of ideas for a new MS humor blog this week.  Then things, namely life, got away from me and I had no time to write one.

I didn’t want to leave you empty handed however and so I offer this piece of writing as a substitute.  I hope it makes you smile anyway.

My plan is to be back at you on Friday the thirteenth, (yikes!) with something new.  Til then, may you all have a health and humor filled week.

Yvonne

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We ARE New Englanders!

We don’t just run on Dunkins, we INVENTED Dunkins!

Every year we expect a white Christmas.  Every year we don’t get a white Christmas. Yet, every year, we expect a white Christmas.

8-10 inches of snow is nothing for us.  But we are going to complain about it anyway,

No storm prep is complete without a visit to the packie.

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To the average home owner an air conditioner and a lawn mower are luxuries, a generator is a necessity.

We can’t wait for summer!  But as soon as we celebrate the fourth, we start counting down the days to Labor Day.

No matter how many times we see a New Yorker get confused in a rotary, we are still surprised that New Yorkers don’t know how to drive in a rotary.

Most of the country never thought much about the word “wicked” until we started pointing out how wicked awesome the word “wicked” really is…

We waited years for the Big Dig to be completed but lose our minds when there is a tie up at the bridge.

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And when we say the bridge we know what bridge that is

We are fiercely, deathly loyal to all of our local sports team, no matter how they are playing.

So loyal that when a scandal breaks out about one of them, local celebrities willingly take credit for it.

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Don’t you dare mess with one of our teams- we will fight to the death to protect their name and reputation.

But we (and only we) have the best curse words to yell at them when they are not playing well.

When Mother Nature hands us lemons, we will find a way to make a buck out of it!  Suddenly everyone has a plow and people start selling snow to crazy people outside of New England.

We know that we don’t talk funny- the rest of the country does.

We have a gorgeous ocean, beautiful bays, and lovely lakes.  But we really love our Dirty Water!

Proud to be a New Englander!

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Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Image courtesy of Victor Habback at FreeDigitalPhotos.net

Image courtesy of Mister GC at FreeDigitalPhotos.net

Image courtesy of think4photop at FreeDigitalPhotos.net

Image courtesy of vectorolie at FreeDigitalPhotos.net

Image courtesy of Evgeni Diney at FreeDigitalPhotos.net

 

A Little MS TMI

An embarrassing multiple sclerosis symptom

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There are not enough words in the English language to describe something that is weird; I know, I’ve checked.

Recently I was told about this neat trick in my Microsoft program where I can type in a word and then right click on it for a list of synonyms.   So, of course I typed “weird” and all that came up was: strange, odd, bizarre, peculiar, uncanny, eerie and creepy.   These adjectives are no match for multiple sclerosis.

Since MS is a worldwide disease, maybe other countries have better words.   But since English is the only language I know, I’m not sure what those words are.

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I used to know some Portuguese but all my MS brain can remember is some swear words that may work but not exactly….

So how then do I explain to you a recent and very personal but weird, (odd, uncanny, peculiar, etc.) symptom?

Since I have started writing about my MS, I have given up on being easily embarrassed.  This symptom however, may fall under the realm of TMI (too much information.)  But it is so, well weird, I have to share it with you.  Forgive me for the graphic nature of this description.

Lately, whenever I have to use the bathroom (which is ALWAYS since one of my most minor but annoying symptoms is increased frequency and urgency of urination-yuck) when I sit on the toilet seat, my right butt cheek feels as though I have sat on something wet.

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There, I have said it.  Gross huh?

And yes, I am sure that is not the actual case. When this happens, I am not sitting in something wet.  Trust me, I have checked that too.

As I am a slight germaphobe (not quite at the Howie Mandel or Monk stage but I can see it fast approaching), I am always pretty careful about what’s going on where I am sitting.

In the cases where I have to use a public restroom (which is becoming harder and harder to avoid,) I am pretty anal (forgive the bad pun) about what I will be sitting on.  Plus, this unique situation (hey I just came up with an adjective that Microsoft didn’t include and yet I still did lousy on all those cognitive tests!), happens everywhere- at home, at my mom’s, at friend’s houses, etc.

What is this and why did it just start and why does it only occur on one side of my butt?

How can this latest symptom (indication, sign, warning sign, indicator,) make sense?

Oh right, it’s MS.

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About the only thing about multiple sclerosis that makes sense is that it doesn’t make any sense at all!

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If this seems familiar to you it may be because I have posted this one before.  And if you’re wondering, this particular symptom isn’t as prevalent as it used to be which is also weird.

And while we’re repeating things, in honor of National MS Awareness Month, I am again giving away three free copies of MS Madness!  A”Giggle More, Cry Less” Story of Multiple Sclerosis.

Sign up through Goodreads for your chance to win!  This giveaway is open to readers in the US, UK and Canada

MS Madness! Goodreads Giveaway

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Emoticon images courtesy of farconville at FreeDigitalPhotos.net

Sign image courtesy of Stuart Miles at FreeDigitalPhotos.net

Toilet image courtesy of Mister GC at FreeDigitalPhotos.net

 

This MS Moment is Brought to you by the Letters ‘F’ and ‘U’ and the Number ‘2’

Multiple Sclerosis looks to Sesame Street for support

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It’s been kind of a frustrating week.  So frustrating that I didn’t have the piece of mind to write a new blog.  And so the frustrated me offers up one of my favorites…….

It was Elmo that finally did me in.   Yes, Elmo, as in Tickle Me.  But maybe that is not fair.  While he was the catalyst, it was really his helpful, female puppet friend Betty Lou that was the root of my actual demise.

It didn’t help that I came late to the magic and wonders of Sesame Street.  Growing up in the early seventies, public television was a somewhat radical concept and the new children’s programming seemed to threaten subversive and counter-culture undertones in my mom’s mind.   The Brady Bunch and The Flintstones were much healthier- nice, safe family values.

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As I grew out of my toddler years her television concerns continued.   The Partridge Family was NOT ok.   The fact that Mrs. Partridge was traveling around the country in a bus and allowing her children to perform rock concerts in front of out of control teens was EXACTLY what was wrong with the country.  At least that’s what my mom always said.

By the time she became a grandmother she relented somewhat and relaxed her television rules.   I would watch Sesame Street with my four year old nephew and we enjoyed it immensely.    I remember rolling around on the floor laughing and crying after a recent breakup with some guy or another while Patti Labelle sang “How I Miss my X” to a very sad looking X.   I thought the scene was adorable and was speaking directly to my heartbreaking soul.

“Drew-don’t you get it?   Her ex is the letter X!   Isn’t that a riot?  And look, X misses her too.  They’ll get back together- I just know they will.”

My nephew looked at me as though I was nuts and ran off to play with his toy fire engine.

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Anyway, back to modern day.   I was in the midst of a horrible month filled with paperwork, appointments, highs, lows, good news, bad news, good advice, bad advice and whatever else one can throw into a month.   After a frustrating breakdown during appointment number six, it was recommended that I see a therapist.   Thus it was that I was at appointment number seven in the lobby of the one therapist that took my insurance and answered the phone when I called.

Much to her dismay as it was her lunch hour, I was an hour and ten minutes early.   No, I hadn’t bothered to check what time I was due there.  My MS brain knew the time.

While she handed me more paperwork to fill out I asked about her practice.

“No,” she told me, “I don’t exclusively treat children.”   It was hard to believe based on the emotion charts, animal posters, blocks, and teddy bears that sat in her waiting room.

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I started the paperwork while I listened to her pack up the hundreds of Legos I noticed on the floor of her office when she opened the door to greet me.    My mind continued to swirl with all that had piled up that month and of all the things I had to do.  But it was my fault I was early (apparently my MS brain knew something that her planner and my calendar did not).  And so, with this round of paperwork done, I grabbed the thing closest to me to read.

It was a book from a Sesame Street series called Sesame Street Library.   In it, loveable Elmo ventures into the library looking for a little black puppy.   As he searches he gets distracted from his important task by story hour.

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I do that all the time.   Could Elmo have MS too?

He meets his buddy Betty Lou and, when asked, remembers his mission.  Betty Lou offers to help.   She gives him all library info he could possibly need and then produces a book called, you guessed it, Little Black Puppy.

Poor Elmo has been misunderstood.  I can relate to that too.  More evidence our furry red friend might be afflicted with a myelin damaging illness.

He explains his plight again.  He is looking for an actual puppy that is missing and happens to be black and little.  Again, the kind Betty Lou wants to help.  Back to the card catalog they go and then to the stacks where she produces a book called How to be a Detective.

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“There Elmo, you can read this book and then you will know how to find your puppy.”

It doesn’t end there.

Betty Lou is a dear friend after all and really, really wants to help so she proceeds to find several other detective books to help Elmo in his search.   Elmo excitedly thanks her.

That’s when I lost it.  In the lobby of a therapist’s office who doesn’t just work with kids even though the only things in the lobby are kids stuff, I proceed to yell at Betty Lou.

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“Betty Lou that is NOT helpful!!!!!  What kind of friend are you?  I know you mean well but if you really want to help, start looking for the damn dog!   How long do you think it will take Elmo to read all those books before the search begins?   After reading the books he will have get the detective kit and then start questioning people and calling insurance companies and hitting search engines and all kinds of crap that take time he doesn’t have.   Can’t you just help look in corners and yell ‘here Fido’ or something?  How bout you read the damn books and then get back to him?”

Poor Betty Lou.  Perhaps she didn’t deserve my wrath but she was not alone.  Elmo was next on my “need a good talking too” list.

“Elmo, don’t be a putz!  Tell Betty Lou what she can do with her freaking books and where to go.   Don’t stand there with that stupid smile expressing all kinds of false gratitude.   Throw the books at her and start looking for the dog.”

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I suppose the moral of the story was that you can find anything in a library.   But I have yet to find a dog there and in my current state, and not being a kid, the message was lost on me.

Perhaps my outburst caused the therapist concern.  She called me in and handed me ten more pages of paperwork to take home and fill out at my leisure.

She asked me what I was looking for, therapeutically speaking.  Then she told me where I could research the answers to what I was looking for.

She recommended some books.

I smiled and expressed all kinds of false gratitude, just like Elmo.

I am even more convinced than ever that multiple sclerosis has got him too.

Author’s Note- please remember that my blogs are tongue in cheek and this post is not meant to criticize therapy as a whole.  The point of the blog is to make fun of this particular appointment in a way that makes me (and hopefully you too) giggle about how frustrating it was….

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Growl, Growl and Howl

Multiple Sclerosis is ticking me off!

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While my blog and my book both strongly suggest that laughter is a valid coping mechanism, I never meant for my fellow MS’ers to think that humor is all there is.  Lots of other emotions are necessary on this crummy, sucky journey of life with a chronic illness.

For the first few years following my diagnosis, people were surprised that I wasn’t angry.  More than anger, the prevalent bummer emotion I was feeling was frustration.

How come I couldn’t figure out this or that? 

Why is everything so difficult? 

What’s wrong with me? 

What am I not doing right that makes my illness so confusing to others?

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Since surpassing my five year MS anniversary I have learned a thing or two and I find myself less frustrated.  Now I’m mad!

Really, really mad!

Furiously mad!

I no longer blame myself for anything.  Everything is MS’s fault.

In case you’re wondering, here are just some of the things that are making me mad-

People who think that the handicapped parking space is actually a rest stop for their no longer needed grocery carts. Dude, where on the little blue sign is a picture of your empty grocery cart?

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The fact that as much as I have to pee, it doesn’t seem to matter if I actually do pee because I’m only going to need to pee again, minutes later.  This really pisses me off!  (I can’t take credit for that pun. It is a quote from my sister who also has MS.)

I am beyond angry that I can’t remember if I’ve taken my medications.  It’s not that I forget that I need to take them.  It’s that I can’t remember if I took them already or not.   Since we were talking about my bladder, let’s use my bladder drug as an example.  I need to take it in the evening between 6 and 6:30 and it is supposed to help calm my bladder down so I can sleep. I never forget to take this crucial medication.  I just can’t remember if I took it already or not.  I dare say that 60% of the time I take it twice.   30% of the time I don’t take it at all.  And maybe 10% of the time I actually take it the way I am supposed to. (I’m not mad about completing that math- I’m actually impressed as math skills were the first thing to disappear from my MS brain.)

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And I’m also mad that many people who read the above and who don’t have the same issue are going to come up with little tricks to help me fix this problem.  And I’m madder still that the tricks won’t work.  Believe me, I’ve tried them all.

While on the bladder subject, I’m mad that because of the above problem, my bladder doesn’t let me fall asleep until at least 11 or 12 at night.  Since I need 10-12 hours of sleep daily just to function, I’m mad that I am usually starting my breakfast when the rest of the world is washing their lunch dishes.

I’m mad that since MS requires me to eat healthy, I’m munching on what are supposed to be green seedless grapes.  Yet I’m still pulling something seed-like out of them.

I’m mad that I spent a ton of time last week organizing, refilling and picking up my prescriptions only to get home and realize the ones I needed the most, I didn’t refill.  And if that wasn’t enough to tick me off, I’m angry that the next day when I set out to do a bunch of errands I forgot to do the main errand which was to pick up the previously forgotten prescriptions.  I had forgotten them again.  It wound up taking  me three days to get the pills I needed and I’m not even sure I have them all!

I’m angry that my hair is super greasy.  What does that have to do with multiple sclerosis you ask?   All the stylists say you shouldn’t wash your hair everyday but every day I forget if I washed it the day before and thus wind up washing it again, every day.

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In the world of chronic illness you need to save and copy all of your important paperwork. I know this. I’m super organized and used to be a master multi-tasker.  Yet in the last month alone I have lost three different important pieces of paper and forgot to copy another important set of paperwork. So yes, that makes me furious,

And it makes me furious that people look at me and say “you look fine to me” and when I describe how I’ve lost such important things they smile and say I’m just spacey.  No, I’m not. I used to be spacey.  I know spacey.  This is not being spacey.  This is the result of a super crummy, sucky illness called multiple sclerosis and that ticks me off!

Phew…I feel better sharing my fury with all of you.   These are only some of the things that make me mad and I and my fellow MS’ers can easily come up with more.  And most are way more serious than seedless grapes that aren’t really seedless.

The question becomes what to do about this anger?

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We could get violent but a criminal record won’t really help us much.

I prefer to take a lesson from my youngest nephew.  He’s 2 and is learning to talk.  Sometimes he doesn’t have the words he needs to express all of his emotions.  So when he gets mad he’s taken to letting out a scary growl.

He’s pretty good at it actually.  If you weren’t used to it, you might think a big scary bear just entered your living room.

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The problem is that he’s too damn cute.  I know the growl is supposed to let me know that he is angry but instead it just makes me smile.  So I started putting my forehead against his little forehead and growling back.

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Seeing his crazy aunt growl too makes him laugh which makes me laugh and before you know it, we are both making silly noises and silly faces and howling with laughter.  Like that, this adorable little guy has gone from mad to silly to funny.

Ahhh, to have the spirit of a two year old.    The thing is, it works.  That quickly, his mood can immediately go from fury to happy (or at least happier,) when somebody makes him laugh.

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It works for him and I’ve learned it can work for us too.

Keep laughing friends.

Get ticked off, get fearful, get sad but when you can, get laughing too.

I promise you’ll feel just a little bit better….

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If you need help finding things to laugh about, check out MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis for some humorous inspiration….

 

Woman image courtesy of imagerymajestic at FreeDigitalPhotos.net

Emoticon image courtesy of farconville at FreeDigitalPhotos.net

Cart image courtesy of Suat Eman at FreeDigitalPhotos.net

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Paperwork image courtesy of Stuart Miles at FreeDigitalPhotos.net

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Bear image courtesy of anankkml at FreeDigitalPhotos.net

Images of my cute nephew courtesy of his mom…

 

 

Still Unbalanced Cycle

More multiple sclerosis NO balance issues

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After a year of turmoil and strife, my Wii Fit and I are back in sync!  In honor of this happy, healthy reunion, I thought I would re-post this blog from last year.  

I hope you enjoy it friends….

My last blog discussed how I had failed the heel to toe test at my neurologist’s office and how that caused drunken memories and great concern.  It concerned many of my readers too, which made me analyze this over and over.  Then I decided to take some action!

Naturally klutzy my whole life, until the heel to toe test incident, I hadn’t given my balance much thought.    I did fall this past summer but that was only because Fido, my pet portable ac unit, tripped me.

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I fell again a couple of months later but that was only because I was packing up my home after needing to move and I was incredibly grouchy about it-the move and the packing.

But on a visit with family recently, I fell again.  Not wanting to admit MS was the problem, I decided to make it a crime of assault instead.  The sidewalk attacked me.

There is even a crime scene photo-

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These goldfish didn’t survive the crime.  They landed on the ground when my two year nephew dropped them and quickly reached for the doorbell.  No, he wasn’t reaching for the doorbell to get me needed help.  He just loves pushing the doorbell.  And with me on the ground, there was no adult to stop him.

I did get my first black eye from the incident which I tried to take a picture of, my first selfie.  But it didn’t come out; proving that I should not take selfies, ever.  But you totally should have seen what the sidewalk looked like when I was done defending myself.  The crack I gave it looked something like this-

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But what if these falls have more to do with balance than assault charges or klutziness?  Maybe, they are a combination of both.

Suddenly I realized I can do something about this!  I don’t have to be content with being a Fido/sidewalk victim, at their mercy whenever they decide to be obnoxious.  My Wii Fit has balance exercises I can do.

I went looking for the Wii Fit.  It’s not that I have been neglecting it exactly.  It’s just that I only moved a few days ago and the Wii Fit board got pushed aside during the move. I hadn’t unpacked it yet.

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Ok, ok, the move was actually five months ago, but that is a few days in MS terms.

I pulled it out, took the batteries from the TV remotes and put them in the Wii Fit board, after removing the old ones and cleaning up battery acid in the compartment-guess it had been a long time since I used my Wii Fit, and then checked out the exercises.

I discovered a new balance exercise I hadn’t tried before- ski jumping!  Aren’t female ski jumpers entering the Olympics for the first time this winter?  I need a goal.  I will practice and practice and then enter the Olympics!!!

No, I’m not crazy.  I know I would never get good enough in time for this year’s team. But the next Winter Olympics, I’m in!

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Ahhh, but the Wii Fit is a cruel and bitter trainer.   It refused to cooperate.   When I would do the ski jump game, it would tell me I failed.  Over and over I would try, eager to improve and become Olympic ready.  And over and over my TV would flash the word unbalanced at me.

Unbalanced, like a washing machine stuck in a wet useless cycle, unbalanced.   This was almost more upsetting than the heel to toe test.

Luckily, I found other balance exercises that I did pretty well at.

Ski slalom for one.  I aced the ski slalom game.

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And tightrope walking.  I was actually pretty good at that.  And, the tightrope on the game is between two tall skyscrapers.  Yet, I didn’t fall once!

Ok, new goal- Nik Wallenda watch out!

I am training to be famous tightrope walker!

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For more on my on again/off again dysfunctional relationship with my Wii Fit.including the unethical way we met, check out my book, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis

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Get Fit Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Concrete Image courtesy of Sira Anamwong at FreeDigitalPhotos.net

Moving Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Olympics Image courtesy of Salvatore Vuono at FreeDigitalPhotos.net

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Tightrope Image courtesy of Vlado at FreeDigitalPhotos.net

 

Super Balls

Multiple Sclerosis investigates Deflate-Gate

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I went there.  I did.  I went to the topic that has been on the minds of Americans for the last twelve days or so; the topic that has everyone in the country sick of jokes about players and their balls.

The reason why I felt ballsy enough- yes, I did it again- to write about this topic is trifold.

  1. I’m from New England and so I have a very close and important perspective.
  2. I’ve tried and tried but just don’t get football. The game is completely confusing to me. I blame it on MS.  But then again, I blame everything on MS.

And,

3. I saw an interesting multiple sclerosis take on this whole scandal.

But then again, I see a multiple sclerosis take on just about everything.

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I didn’t pay much attention to the story at first.  But then when it was all over Facebook, I started to follow it.  In case you are as clueless as I usually am, the basics are as follows;

The New England Patriots won a football game that was so big, it meant that they could play in the Superbowl.  The team they beat was from Indiana, the bolts or colts or dolts or something.

After the game, there were rumors that the Patriots had rigged the game by under inflating the footballs they used.  Some say this was considered cheating and gave the Patriots an unfair advantage.  They were reported to the big sports people who are supposed to sort everything out when scandal breaks.

Everybody expressed an opinion while they waited for the guys in charge of all the balls to respond.

The coach said he had nothing to do with how inflated or not inflated the footballs were supposed to be.

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The quarterback just flashed his adorable smile and then showed a picture of his gorgeous wife and so all watching became enthralled with their beauty and stopped listening to what he was saying.

But for me, my concern was for the footballs themselves.  No one was talking about how they felt.  No one asked them, the the subject of the controversy, what had actually happened.

Oh sure, people talked to the experts, the ones who were responsible for taking care of and protecting the balls.  But no one seemed to have a clue about how the balls really felt or what it was like to live as a football.

I could relate.  It reminded me of how I feel sometimes with my multiple sclerosis.

Say there is something I am excited about, a party or a game or something like that.  I build myself up.  I prepare and inflate my mind and body to the best of possible circumstances within my control.  I do everything I can to take care of myself and rest and to look pretty and to be prepared for whatever the event will throw at me, throw pun intended.

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I get to the event pumped.  And then, as more and more people approach me, talking to me, tossing suggestions at me, asking things of me, against my best intention, I start to come down.  I want to stay my best, I truly do.  But sometimes multiple sclerosis has other ideas.

Little by little I get weaker and as my legs and back start to ache, I can get smaller too.  But the end of the event it is possible that I have deflated to a soft, wimpy, useless mess in the corner of the event, no longer what I was when I first arrived, no longer as capable as I had been and no longer as able to do what is expected of me.

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And it can upset people.  Especially since I still might basically look the same and they can’t tell that anything is wrong with me. That’s when the judging begins.

What’s wrong with her?

Why is she so tired?

Why wasn’t she at her best?

Why wasn’t she able to do what was expected of her?

Why can’t we count on her?

If she is so sick, why does she look the same?

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These folks might inquire.  They might ask the experts and the doctors what is wrong with me but usually they won’t accept the responses given.  It is easier to assume there is a scandal or cheating aspect involved.

She probably didn’t take her meds.

She probably took too many of her meds.

She is probably just being lazy.

Her doctors are probably useless.

Maybe her doctors are really doing nothing and scamming her insurance company.

And all the while, these folks aren’t asking me, the innocent, what is really going on.

Can you relate?

Can the footballs at the heart of this scandal relate?

And I don’t even have a talented, beautiful, super couple to defend me.

All I’m saying is let’s take a step back and look at the big picture- if the balls hadn’t lost air as they were exposed to the violence, the elements and the rumors, would anything have changed?

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At the very core of the footballs, if they happened to lose a little air along the way, would the players, families and friends who love them, love them any less?

Maybe it’s time to learn what matters and what doesn’t.  As the balls taught us, show up and do the best you can with what you are given.   And hopefully, friends and family, players and coaches, will make the best out of what you are able to offer them.

No scandal needed. No insults, rumors or drama.  Just have faith that when your balls tell you they are doing the best they can, or are or are not as big as they’re supposed to be, it’s how they’re are treated that really matters.

You may say I’m crazy.  And maybe I am.  But I no longer care.

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There’s a big, super game coming up and that’s where the real focus should be.

As a New Englander, I’m going to do my best to be as supportive of the balls as I can be.

Especially since I don’t really get their job. And since I may not be completely inflated myself, I’m just going to trust that they mean well and are doing their best.

If this whole situation has taught us anything, it’s that we need to protect our balls.

Truth is friends, I’m so clueless I will have no idea if they are doing their best or not.  And I may bore easily and change the channel.  But in my NE/MS heart, I am rooting for them and saying come on NE, do the best you can with the balls you are given!

Dear friends, please remember that my blog posts are tongue in cheek and I’m not afraid to get a little silly to try to make you giggle.  Whoever you are rooting for on Super Bowl Sunday, have a great game!

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The Curious Case of Multiple Sclerosis Part 5

Bored as a Board

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When I was growing up, my mom or my dad, my sister, my grandmother, someone in my life used to like to say, ”if you’re bored, you’re boring.”

This phrase has been ingrained on my brain since then. I want to do everything I can to not be boring, although I may be losing the odds on that one, and so I have a ton of things to do that keep me from being bored.

I have my regular “to do” lists.

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I have my writing “to do” lists.

I have my “want to read” lists.

I have my “want to watch on TV” lists.

I have “my various, fun ways to get exercise” list.

I live right near a beach for goodness sake!  Just watching the ocean waves change in shape and strength is pretty exciting on its own.

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And then there are the tasks my day is not complete without- catching the weather report, playing SongPop on Facebook, reading my Bible, checking in with my friends to see how they are and so on.

The point being, I have no reason to be bored, ever!  And not just because of things I should do or need to do, but because I have a ton of things that I want to do.  And considering how MS robs us MS’ers of precious hours in our day, I should be pretty busy during those hours.

Nonetheless, just the other day, I commented that I was bored.  How’s that even possible???

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I hesitated to tell anyone this, except for all you readers and those who may randomly come across this post in a basic internet search, for fear that what I would hear back is, “if you’re bored, you’re boring.”

It made no sense that I, a person who basically needs 10-20 hours of sleep a night, and who has a ton of things she WANTS to do, and who is always complaining about never having enough hours in the day, should ever find herself bored.

I was so bored in fact, that I looked up the word.  Two synonyms of the word are fatigued, tired, and inattentive. Ok, that’s actually three synonyms but my brain was too inattentive to do that math correctly.

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This in depth internet research was actually helpful.   Even though I probably would have blamed my boredom on MS anyway, as that’s what I always do when something annoys me, the online definition made it legitimate to blame multiple sclerosis.

If the words fatigued, tired and inattentive don’t prove that this state of being is the fault of multiple sclerosis, than what does?

I researched more even though I was exhausted and all I wanted to do was lie down flat and stay that way, which made me picture an actual board.  I was, officially, bored as a board and it was MS’s fault.

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Leave it to multiple sclerosis to have yet another frustratingly, contradictory aspect that I like to call “curious.”

MS greatly zaps time from an MS’ers day due to how much longer it takes us to do the most basic of things and how much extra rest we need.  Yet in the few hours you have left in your day MS can cause your brain to become so unhinged, so completely devoid of any activity, that you have no motivation to do anything you want to do.

(For the record, antonyms of the word bored include energized, exhilarated, refreshed- not MS words at all.)

So being bored when you’re not bored and have no time to be bored is another curious case of multiple sclerosis.

But what to do about it?

I searched more and found that BuzzFeed Life has a list of 17 Things to do when you are Bored Out of Your Mind written by Leonora Epstein.  What was on the list?  Make more lists!

How is that helpful??  I already have lots of lists.  Also among the ideas were do a puzzle or plant an herb garden.  Clearly this list was for people with just regular old boredom.  It was not designed for people with the mega boredom that comes with multiple sclerosis.

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I needed to know how to combat this useless, brutal time of nothingness that MS seems to insist I use to waste what little of my day that I am given.

I needed to know things I could do that didn’t require any real brain function at all.

So I started a new list, a list of 18 Things we who have MS can do when we are bored-

Sit Still

Lie Down

Jiggle your right leg up and down

Jiggle your left let up and down

Look at the ceiling

Breathe

Look at the picture on your wall

Look at your hands

Look at your feet

Pull up your socks

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Look up the word ‘boredom’ on your computer

Swivel in your swivel chair

Rock in your rocking chair

Open the curtains and look out the window

Close the curtains and sit back down

Wonder how the spider got in your bedroom

Count this list to see if there are really 18 things to do listed

Look for lint on your living room rug

(NOTE-don’t even try to collect the lint, that is a project for when you are not bored!)

Feel free to use my list whenever you want readers; I’m all about helping others.  I want to do my part to help make sure that MS or not, you are never bored.

Because supposedly, “if you’re bored you’re boring…”

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Image Credits

Ocean foam image courtesy of artur 84 at FreeDigitalPhotos.net

Question mark image courtesy of Master Isolated Images at FreeDigitalPhotos.net

Busy woman cartoon images courtesy of jesadaphorn at FreeDigitalPhotos.net

Wooden board image courtesy of nuchylee at FreeDigitalPhotos.net

All five other images courtesy of Stuart Miles at FreeDigitalPhotos.net