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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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….

 

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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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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

 

The World is coming to an End Part 2

Multiple Sclerosis is even uncooler than originally thought

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If you read last week’s blog, part one of this crucial two part posting, you might have felt that I was exaggerating.   But consider even more evidence as multiple sclerosis and aging continue to drastically combine, making me and my world even uncooler than originally thought.

As someone smart who would have loved to have the talent to be in a rock band, I recognize that rock bands are cool; especially classic rock bands.   I recently discovered that my TV has on it something called Music Choice stations where I can pick a genre of music and just listen to it, 24/7 if I feel like it; or if MS is keeping me from sleeping, thinking or doing anything remotely productive.

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I didn’t know about this station previously as the stations I actually get on my television die after about channel 100.  Music Choice is in the 500 range and whoever goes all the way up there?

Anyway, they have a classic rock channel and of course, that would be the coolest one to watch.  And it’s even better than listening to a good radio station as no commercials interrupt the classically cool music.

As I was listening to this station I noticed that to give you something to look at while they play music they offer “Did You Know” questions about the artist whose song they happen to be playing at the time. I was super proud that I knew most of the answers to the questions.

Yes I knew that Mick Jagger went to the London School of Economics

Yes I knew that Jimi Hendrix lit his guitar on fire at the Monterey Pop Festival

Yes I knew that Led Zeppelin was inducted into the Rock and Roll Hall of Fame in 90’s.

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What a relief!   MS hasn’t robbed my brain of knowledge of important information!

But after the trivia questions, the channel shows advertising relevant to the person watching the channel.  And what did the Music Choice Classic Rock channel offer?  Advertisements for Medicare, knee replacement surgery, Life Alert bracelets and loan payments!

Seriously!  The channel could at least take me back to my party days by offering fun beer and wine advertisements.

I no sooner thought that when they showed another advertisement- for help with addiction!

Everything I ever understood about what I thought was cool and what wasn’t just got completely shifted around as I sat on my sofa, enjoying the music but paranoid about what ad would pop up next.

Speaking of paranoid, did I know that Black Sabbath’s song Paranoid was their only top 20 hit?

No, I didn’t know that one.  And like that, my worries about the world coming to an end were back.

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I couldn’t even take comfort in the fact that my favorite guitarist, Keith Richards, wasn’t helping me sort this all out.

Keith Richards, the hardest rock partier of the seventies and one of the coolest musicians ever, had just published a children’s book!!!

Who could have possibly seen that coming???

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True, it is a book about a cool kid with a cool grandpa who both play cool guitars.

And true, it has really cool illustrations done by Keith’s own daughter.

But still, this classic of classic rock guitarists writing children’s books-how am I supposed to handle that?

Luckily I took comfort in the fact that if Keith was going to write a kid’s book at least he wrote a cool one. I pondered further and wondered if the answer is that maybe perceptions change as we age and/or as MS robs us of things that we treasure.

Yes, MS is still super uncool.  But maybe it’s not that simple.

So please allow me to take pride that, for the most part, I can still recognize cool even though cool might not be as obvious as it used to be.

MS= Very, very uncool

Worrying about what’s cool and what’s not=uncool

Living life with whatever you may need to rock it= Cool

Realizing that changes in life don’t mean that the world is coming to an end= cool

People with MS kicking MS butt= Super, super cool!  Probably, the coolest of the cool…

Next to Keith Richards of course.

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A letter to my awesome readers-

Dear friends,

Did you know that you can help fight multiple sclerosis?   I believe that one way is by using your sense of humor to fight back!  Every time you smile, giggle or laugh out loud, you are fighting back!

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Another way you can fight MS is by purchasing my book/ebook, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis where a portion of the proceeds from each sale goes to nonprofit agencies helping people with, or who are fighting chronic illness.

But here’s a new way to fight back.  By checking out www.iConquerMS.org 

This website, sponsored by the Accelerated Cure Project for MS is described as a research initiative where MS patients can share their health histories and work together to find the best research to develop a cure.  With patients working together, who knows what we can do!

Check it out here to see if you would like to become involved..

www.iConquerMS.org

 

 

Girl Guitarist Image courtesy of stockimages at FreeDigitalPhotos.net

Insomnia Girl Image courtesy of debspoons at FreeDigitalPhotos.net

Happy Emoticon Image courtesy of farconville at FreeDigitalPhotos.net

Angry Emoticon Image courtesy of farconville at FreeDigitalPhotos.net

 

 

The World is coming to an End Part 1

Multiple Sclerosis is uncool

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The world is coming to an end!

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

What commercial you ask?

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

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

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

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

Evel

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

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

evel barbie

 

ken sign

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

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

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

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

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

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

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

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

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

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

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

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

MS=Not Cool

Henry Winkler advertising products for the older crowd= Not Cool

Fonzie in his best Fonzie years- Cool

My family, friends and readers= Super Cool!

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Guess I still have that skill after all….

Lessons from an MS Semi Pro

Things NOT to do when you have multiple sclerosis, things your neurologist might not mention

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A couple of weeks ago, I was preparing to do an injection of my DMD. For all you MS newbies out there, DMD actually stands for Disease Modifying Drugs.

I’m not being condescending defining that for you; I only recently discovered what it stood for myself.  Before that I thought it actually stood for the Don’t Make me Do them meds or those Damn MS Demon shots.

Despite all the oral medications that have been recently developed, I’m still doing shots.   Even though I don’t like them, they seem to be working.

In order for me to get through the self injecting process, I need to use the auto injector.  One push of an awful button and then I’m done.  But this time, when I pushed the button, nothing happened.

As far as I could tell, I had done everything right.  In investigating this issue, I held the tip of the injector up to my face and looked inside.  HUGE mistake.

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The injector fired suddenly and thankfully, miraculously, I was able to jerk my hand quick enough to keep the meds and the needle from my eyes.  Instead, the medication dispersed all over my thermal Bruins blanket which was just silly.  I have owned this blanket for 15 years and it is still one of the best Christmas gifts ever!  It is super warm, super strong and super healthy and it doesn’t need any drugs.

(Unlike the time I used one of my injections to fix a wobbly coffee table but you’ll have to read MS Madness! for THAT story.)

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Anyway, after the auto injector blunder I realized I had just learned a valuable lesson in an MS thing not to do.  Then it occurred to me that this incident happened on 12/17, the five year anniversary of my MS diagnosis and I didn’t even realize it at the time.

I never forget the date of my diagnosis but I also never remember it either.  (If that makes sense to you, you may have MS.)

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The coincidence of the trouble with this particular shot made me think back to the many other lessons I have learned on my MS journey.  I decided the right thing to do would be to share them with you.

So here you go- I hope they help.

Note- not all of them are MS related but they are all MS related.

(If that makes sense to you then, again, you may have multiple sclerosis.)

The first one we already covered- don’t look down the barrel of a loaded gun- oops I mean, loaded auto injector.  (But don’t look down the barrel of a loaded gun either- that’s not good.)

Secondly, if you are prepping your upper left arm to give yourself a shot, don’t inhale the alcohol swab. It’s not Jagermeister.  It won’t taste good or be any fun.

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You CAN inhale the alcohol swab if you want to go on your own weird cleanse as you won’t feel like eating or drinking anything for days.  Except pretzels.  You may want lots and lots of stale pretzels…

Third-don’t look back after a cute guy smiles at you.  You may just wind up tripping over the threshold of the door you are supposed to be coolly walking through, not awkwardly falling through.

The fourth lesson is similar to the first.  If you are deciding whether or not you like the scent of an air freshener, don’t spray it into your face to figure it out.  There are easier ways to get the information.

The next two lessons take us into the kitchen.  The fifth is that salad dressing is for salad, maple syrup is for waffles.  Perhaps it might help to remember if you don’t keep them side by side on a shelf in your refrigerator.

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Sixth, don’t spray your kitchen floor with cooking spray.  Believe it or not, that’s not what it’s for.

And it doesn’t matter how much you like hockey, the sprayed kitchen floor doesn’t cut it.  Nor does it mean your favorite hockey team (the Bruins) might show up just because your kitchen is now as slipperery as an ice rink.

Maybe if you have multiple sclerosis you just shouldn’t use spray things at all…

The seventh lesson is this-don’t sell drugs.  Not even if you have the purest of intentions.  Not even if you are offering such a discount that they wind up being free.  Not even if the drugs will go to waste if you don’t pass them on and people desperately need them.

(For the ugly details on how I learned that lesson check out my prior blog post Lawbreaker.)

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Since it was near Christmas time when I almost accidentally injected my eyeball, the next two lessons are related to the season.  The eighth lesson is don’t try to wrap presents with double sided tape.  It will not work, not even if you’re Martha Stewart.  Better yet, don’t buy double sided tape, even if it’s a good deal and looks just like regular tape except for the tiny words that say it’s double sided.

The ninth lesson is don’t buy Christmas cards with glitter on them.

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Yes, the glitter is pretty.

Yes the glitter is festive.

But is also a pain in your injection bruised behind.

It will get everywhere.

It will multiply like termites.

It will cover you and everything around you.

It will get in your hair.

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It will get on your teeth,

It will get on those Christmas cookies you are not supposed to be eating.

It will get on your double sided tape and the two will conspire to enfold you into an endless glitter filled world.

The tenth and last lesson is the most important.

Here it is-

Seriously, very seriously, don’t take yourself too seriously.

Here’s hoping for a healthy, happy, humor filled holiday for all of you!!

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Still a Little Lazy

Too Lazy Even for Me Makes an MS Comeback

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The plan was to post a brand spanking new (where does that weird expression come from anyway?) blog today.  It really was.  Especially since the last two blogs have been repeats.  

But then important things got in the way like visits with friends, a big Bruins win, Facebook, Christmas preparations, church, MS fatigue and the Season 1 True Detective DVD rental from the library.  

In the balancing act of multiple sclerosis that we MS’ers do all the time, well a brand new blog got pushed off the list.  I was just too tired.  And maybe a little lazy after all those delicious Christmas sweets.  

Which got me thinking about a blog I wrote in 2012 about just how lazy we, as a human race, can be.  

And so I decided to repost this blog from 2012.

td And I promise, no I SWEAR, that I will post a brand new blog NEXT week.  As long as I have finished drooling over Matthew McConaughey in this riveting new drama…

Too Lazy Even for Me

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So I know that I mention (complain, whine, lament) here a lot about the extreme fatigue that comes with MS.   But it is a fact and with this fact, comes the fact that many an MS’er has learned to take shortcuts to save energy.

Most of these shortcuts involve skipping unnecessary tasks.   Some MS’ers are pretty good at this.

Me, I’m still learning.

Even though I skip watching TV commercials as much as possible (especially in an election year- so glad THAT’S over), I was drawn to a particular commercial recently.  I think what caught my attention was that the commercial started by asking the question “how many buttons does your car have?”

I had never really thought about it.  My car is a paint chipped 2005 Toyota Corolla that has served me well since I bought it pre-owned in 2004 (don’t ask.)

With the exception of the incident where a tree fell on it during a freak winter storm (another don’t ask but now you have the root of the paint chip problem,) I have been very happy with it.

It has buttons but I have never counted how many.  I just push them and go.

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The commercial was for a 2013 Cadillac XTS and the reason why the commercial was asking about buttons was because this new model of Cadillac has far less buttons than your average vehicle.

The car has sensors that tell the car’s control panel (essentially its dashboard) everything that is happening on the road around you.   It has a Cue which means it can give you infinite listening features as well as unlimited access to all your contacts.

It can connect up to ten different Bluetooth devices and it has Natural Voice Recognition so that you don’t even have to lightly touch the control panel, you can just tell the car what you want it to do.

You can buy this car and go from a few buttons that you have to manually push in your current car to this car where you don’t have to move at all!

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Maybe it’s me, and keeping in mind that I am all about conserving my energy, but I can’t help thinking that if I am too tired to push a button, then I am probably too tired to be behind the wheel.

Arms too achy to maneuver the steering wheel? Perhaps I don’t belong behind the steering wheel at that particular time.

Only a day after seeing that commercial, a friend sent me an email warning about a problem with newly issued credit cards.  All you shoppers out there, take note.  It seems without you even requesting it, credit card companies are issuing new cards that have a teeny tiny wireless symbol on the back of them.

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What this means for you is that you no longer have to stress yourself out with the tedious task of swiping your card thru the credit card machine when you purchase something.   You can just pull your card out of your wallet and the WIFI signal will tell the credit card machine all your card info.

Thank goodness!  After a long day of hitting the stores, that little swipe at the register completely does me in.

Again, maybe it’s me, but I am thinking that if I am too tired to be swiping my card for a whole two seconds when I buy something, maybe I shouldn’t be shopping.

Let’s see- I’d really love the new Cadillac XTS but I am just too exhausted to swipe my card.  Oh, I can just hold my card while I walk by the machine.  Great- let’s do it, the Cadillac is all mine!

I received the email warning because, (surprise surprise,) thieves have learned how to use these new cards to steal from you.  They just hold up a flat screen as you happen by a credit card machine and they are good to go.

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On the days when my fatigue really sets in, if you don’t know me or my MS you could try to call me lazy.  (Try it all you want but I bet I will suddenly find some energy to belt you.)  But in my super long list of things that are exhausting, pushing a button and swiping a card don’t come up.

If they could make a gadget that automatically gives you a shower, puts on your clothes and make up, and styles your hair, I might be interested.

How about a gadget that cooks dinner AND washes the dishes?    Now you’re talking.

If I could recline on my sofa resting my very achy body and just tell a gadget to do the laundry, I might get excited.  I’m not too particular, I would even understand if I had to push a button to activate the thing.  As long as I didn’t have to push the button more than once or push it too hard, I’m all for it.

Salt n peppa push it remix

Hey Salt-N-Pepa, the eighties are over, we don’t have to push it anymore.

Unless we want too of course.

Have a fabulous New Year dear friends!!!

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