Category Archives: MS General

Meet Me in the Windy City

Chicago MS Summit  Part 1

ID-100286144

My blogs this week and next detail my unique version of the events that transpired during an MS Summit sponsored by Novartis Pharmaceuticals Corporation.

Novartis provided all the airfare, hotel, meals and travel costs for this summit.

When I first started writing about the crazy and frustrating aspects of my life with multiple sclerosis it was to keep myself from actually going crazy.

After a lot of time and a lot of writing, I started thinking maybe I could use my writing to make a buck or two.ID-100200197

When neither of the above writing goals came to fruition but readers started commenting that I made them smile, I then discovered the real goal of writing- to help others.  Helping others is important, even if I am still crazy and poor, and thus why I keep on sharing my MS stuff with all of you.

What I didn’t realize was that every so often, a drug company does care and wants to hear what people with MS think.  To this end, Novartis recently invited 10 MS bloggers to a summit in Chicago.

How they picked their 10 I’m not sure but I was thrilled to be included.  I had never been to Chicago and couldn’t wait to see a new city and meet up with my fellow bloggers, many of whom I had met before, most of whom I followed.

Novartis asked us to come talk to them because they said we were in “the space.”

ID-10082707

I’m not totally sure what that means but I think it has to do with the fact that they couldn’t really invite all 2.5 million people living with multiple sclerosis to Chicago as the city isn’t THAT big.  But they could ask people who write about MS to come and then share what we are hearing from our readers and tell Novartis about it.

At first I thought, well that doesn’t seem fair.  How come I get to go and others don’t?  Then I thought, screw that, it’s a free trip to Chicago!

And I’m so glad I went.

Novartis chose MS bloggers with different experiences, different levels of progression and different writing styles and so reports from the summit can and will vary greatly.

Here’s mine-ID-100333045

I arrived in Chicago to a rainy, cold and yes, windy city.  No wonder it has that nickname.  There was to be a dinner that evening where we bloggers could visit and meet some of the Novartis staff who would be hosting the next day’s events.

I was to have two hours of sightseeing time before the dinner but the rain and heavy traffic it caused put an end to that.  I did do some sightseeing though.  From my hotel window I saw a Dunkin Donuts, which I promptly walked to get some hot tea.  Nothing says familiarity to a New Englander than a Dunkin Donuts logo.

Then I rested.

Then I had a great dinner with some great people complete with delicious pasta, free wine and crucial to top notch brain skills, chocolate.ID-100212435

The next morning started with a healthy breakfast and a roundtable by Chicago area MS specialists who wanted to talk about symptom management.  I wasn’t expecting much- hadn’t we all heard this info before?

But I was wrong.  The panel had lots of tips and so did my fellow bloggers.  We were able to learn from each other things we didn’t know, may have known but forgot, may have decided weren’t relevant, or maybe didn’t want to believe.

For example, Kegels, yoga, probiotics and water really ARE important even if you don’t want them to be.

Limiting beverage intake in the late afternoon doesn’t really help your OAB at all, especially if you are also dehydrated.

There really isn’t a treatment for cognition issues except for overall MS wellness techniques and yikes, aerobic exercises.

You can do aerobic exercises even if you are fatigued and have trouble standing which was depressing as there went both of my excuses.ID-100214898

We helped each other with different tips.  I sat next to a Novartis employee who had brought diet soda with her to drink during the summit.  My experience of breaking my diet coke addiction got to her and she switched to the free water instead.

What surprised me was how so much of the discussion focused on information from the urologist on the panel.  Ironically, as soon as she started to talk everyone suddenly had to pee.   One by one my fellow bloggers went to the bathroom.ID-100100959

I had to go too but didn’t want to miss anything.  So I tried to hold it and cursed myself for forgetting to do my Kegels.  It got hard to hold when the urologist actually said “new information about bladder control is constantly trickling down..”

I couldn’t help it.  I cracked up and elbowed my fellow blogger to my right. He got it of course.  We MS’ers know a good MS vocal faux paus when we hear it.

I was in even more trouble as the bladder talk turned to talk of cognitive issues and I certainly had to hear all of that.  Turns out my particular form of cognition trouble has to do with the executive functioning component of the brain which sounds really fancy but is troubling as there is not much you can do except to have someone close to you correct your mistakes.  Since most of the people close to me are pretty crazy themselves, I could be in big trouble.

It’s amazing I even made it to Chicago in the first place considering my executive brain non-functioning component.  Thankfully, Novartis was prepared and had smart people help me.

At this point, I really, really had to use the restroom.  But the next topic was sex and that was far too interesting to miss.  After sex came, naturally, pregnancy and since you have to have a sex life to get pregnant, I finally had a time to use the bathroom without missing too much.  I made it but barely.ID-100334880

The rest of the summit consisted of a healthy lunch, and a dialogue between us bloggers and Novartis about social media, patient interactions, what has worked for bloggers as far as reaching an audience, medical technology and various campaigns to help inspire the MS community while spreading MS awareness.

The day brought some great discussions, and not once were any particular drugs mentioned, including Novartis manufactured MS medications.   This fact made me feel as though Novartis really did want to hear from the MS community.

As the cost of disease modifying drugs continue to skyrocket and patients continue to be VERY concerned about the motivations of the drug companies, it was good to feel heard.  I hope me and my fellow MS bloggers provided some great information that came directly from what we are hearing in “the MS space.”

If we didn’t, well, we at least had a blast!

mssummit2

Tune in next week for the rest of the weekend adventures including getting kicked out of a cab, a major MS realization and how MS and I survived twelve hours of airport frustration!

Image courtesy of Vichaya Kiatying-Angsulee at FreeDigitalPhotos.net

Image courtesy of moggara12 at FreeDigitalPhotos.net

Image courtesy of  siraphat at FreeDigitalPhotos.net

Image courtesy of Tuomas_at FreeDigitalPhotos.net

Image courtesy of Lehtinen at FreeDigitalPhotos.net

Image courtesy of Vichaya Kiatying-Angsulee at FreeDigitalPhotos.net

Image courtesy of foto76 at FreeDigitalPhotos.net

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Lies, Lies, Lies, Yeah-Re-release

A now old, but new MS symptom

ID-100211556

So my computer is back and I’m getting caught up.  And I’m finally rested and refreshed after a fun, paid weekend away in the windy city.  More on that later in the month as I can’t go to Chicago without coming up with at least one blog about it!  

But this week, as I try to get my act back together, I offer a previously published blog. But don’t worry- it’s one of my favorites and includes a picture of a baby so funny looking that she is actually cute.  And don’t fret, I’m not making fun of someone’s baby.  The baby is me.

By the way, I want to tell you about a slight change with my future posts.  The blog powers that be tell me that Thursdays are a better time to post.  And my writing group is back to meeting on Friday mornings. So, starting next week, my posts will be up by Thursdays at noon.

Thank you friends- you guys rock!

ID-100260845

Lies, Lies, Lies, Yeah-7/12/13

No friends, this is not a blog about lame 80’s music.  And I am sorry if that song is now stuck in your head.  Actually, that is a lie.  Misery loves company and since it is stuck in my head, it might as well be stuck in yours too.

This is a blog describing how multiple sclerosis has turned me into a liar.  Just when I thought MS symptoms couldn’t get any stranger, I started lying all over the place.

Often the more you talk, the more likely it is you might lie whether you mean to or not.  And unfortunately for me, I am an extreme talker.  This is not necessarily an MS symptom.  I was just born this way.

As a baby, my parents actually took me to a pediatrician as I NEVER cried and they thought that was weird.  When I would wake in the morning, instead of crying for attention, I would talk away.

baby pic0001“Bah blah, goo goo bah bah, mme bbee bee nah, fro bah bah bah, goo mim ma me nah nah bah.”

This basically translated to, “hello, big people, I’m up and starving.  Can I have fruit loops like my sisters instead of a boring bottle?  Oh, and you won’t believe what’s in this diaper!  Big people, hello?  Where are you?”

As I aged, the nonstop talking continued.  Even so, I tried to be an honest person.  There was an occasional little fib here and there to spare hurt feelings.  But usually I was smart enough to spare feelings in a way without lying.

“It’s not that that skirt looks bad exactly.  It’s just that I think you can find something far more flattering than a size 2 on your lovely and voluptuous size 12 frame.”

But the older I got, (and now I know as I aged MS was starting to creep around my brain), keeping an ‘honesty is the best policy’ mindset became harder to maintain.  Coincidence?  I think not.

ID-100310731

If someone told me something was a secret, you couldn’t waterboard it out of me no matter how hard you tried.  But if you didn’t specifically use the word “secret,” I was an open book.  My filter was gone and I lost the ability to think through what to say when, while I was talking nonstop.

This mostly involved covering up other people’s little fibs.

Person A “I told Person B such and such so as not to hurt her feelings.”

Person B “did you know that Person A thinks I am fantastic?  What did he tell you about how fantastic I am?”

Or there was this example.  Person A would tell me something.  I would tell Person B.  Person A would flip out that Person B knew what I knew and would ask me did I tell Person B?

“Ahhh, I don’t think so, I’m not sure.”

Or Person A would tell me something and then Person B would ask me what Person A said.  I would get confused- should I sugarcoat Person A’s words?  How do I do that?ID-10093619It became really traumatic and so I would end up saying, “Person A- Oh no, they didn’t tell me anything.  Who is person A again?”

Allow me to state again that MS has destroyed any filter I may have.  Don’t tell me anything you don’t want me to repeat.  Trying to remember what not to say when just adds more stress to my already stressful day.  Cognitive difficulties lead to my needing to lie.  I don’t know anything.

The lying increased with the “how are you questions.”  If I answered truthfully, perfectly healthy people would respond, “I know what you mean, I get that all the time.”

Or, with something like, “I know you say you don’t feel well, but you look great,” which pretty much says to me that they think I am lying anyway and then I was even more confused.

I started just answering “I’m hanging in” which must be a total lie as I don’t even know what that means.

Then there are the other little lies I have noticed MS making.

The drug company, “are you ready for a refill of your injections?”

“Oh yes please, I can’t wait.”

Your friend, “that won’t be too much for you, will it?”

“Of course not.” Lies, lies, lies, yeah….

ID-100278234

Your doctor, “are you maintaining a healthy diet?”

“Absolutely.”  Not exactly a lie if you put a tomato on your double cheeseburger.

The cool, casual acquaintance, “you look beat- you must have had an exciting night.”

“I did!  It was a blast!”

And by exciting I mean I didn’t fall asleep until the very last commercial of the show I was watching.  To me, that is exciting.

Little by little I was telling more and more lies and I only recently discovered this fact.ID-100162874

It has been a hot, humid, crazy, stressful month and I didn’t have any ideas for a new blog.  I decided I would just post an old blog for this week.

And then I remembered that last week I had promised my readers a brand new blog.  Reposting something old meant that I was lying to my beloved readers.

The very idea caused me to stress.  I analyzed lying as a whole.  I became increasingly fatigued.  I couldn’t stop thinking about lying.

The lame Thompson Twins song (there were three of them by the way- twins was a total lie) came into my head.  I started writing to try to get it out.  And before I knew it, I had a new blog.  So there you go.

Sometimes multiple sclerosis has a way of working itself out.

Of course that is a total lie but what would this blog post be without one or two?

PS- Want to read a funny, inspiring book that will make you giggle and giggle over and over again?  If so, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis delivers!  That’s no lie- the reviews prove it!!

Happy Fourth of July dear friends!!!

ID-100113941

 

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Image courtesy of iosphere at FreeDigitalPhotos.net

Image courtesy of stockimages at FreeDigitalPhotos.net

Image courtesy of stockimages at FreeDigitalPhotos.net

Image courtesy of stockimages at FreedigitalPhotos.net

Image courtesy of stockimages at FreedigitalPhotos.net

Image courtesy of nirots at FreeDigitalPhotos.net

Not Just About the Cupcakes

A multiple sclerosis statement

ID-100216506 (1)

There’s a new hero in my MS world.

He gets me.

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

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

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

ID-10048403

Or her.

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

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

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

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

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

ID-10036699

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

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

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

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

ID-10049232

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

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

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

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

Likely you know what I am talking about.

ID-100206630

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

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

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

“Linda, honey, listen to me!”

ID-100174872

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

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

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

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

ID-100311612

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

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

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

ID-100159223

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

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

Just like that!

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

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

And so, I’ll say it again.

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

ID-100160915

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

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

Image courtesy of  vectorolie at FreeDigitalPhotos.net

Image courtesy of  Stoonn at FreeDigitalPhotos.net

Image courtesy of  Salvatore Vuono at FreeDigitalPhotos.net

Image courtesy of Yai Siricha at FreeDigitalPhotos.net

Image courtesy of  Stuart Miles at FreeDigitalPhotos.net

Image courtesy of  Stuart Miles at FreeDigitalPhotos.net

Image courtesy of  stock images at FreeDigitalPhotos.net

Image courtesy of  digidreamgrafix at FreeDigitalPhotos.net

Image courtesy of  89studio at FreeDigitalPhotos.net

No Curtains for You

A multiple sclerosis shopping escapade

ID-10039257

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

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

ID-10013528

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

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

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

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

ID-10043310

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

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

ID-10078817

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

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

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

ID-10016291

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

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

“Mom, doesn’t Sears carry curtains?”

ID-10057880

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

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

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

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

ID-100225334

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

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

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

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

ID-100181393

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

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

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

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

I just sighed….

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

ID-100238505

Image courtesy of digitalart at FreeDigitalPhotos.net

Image courtesy of Salvatore Vuono at FreeDigitalPhotos.net

Image courtesy of  winnond at FreeDigitalPhotos.net

Image courtesy of  njaj at FreeDigitalPhotos.net

Image courtesy of Sharron Goodyear at FreeDigitalPhotos.net

Image courtesy of  Witthaya Phonsawat at FreeDigitalPhotos.net

Image courtesy of  hyena reality at FreeDigitalPhotos.net

Image courtesy of  Keerati at FreeDigitalPhotos.net

Image courtesy of  Stuart Miles at FreeDigitalPhotos.net

Chop their Happy Little Heads Off Again

Multiple Sclerosis gets ready for spring

ID-100149411

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

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

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

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

None of which I am excited about.

ID-10055359

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

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

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

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

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

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

ID-10094491

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

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

ID-100135268

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

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

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

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

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

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

ID-100156167

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

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

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

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

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

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

ID-100129649

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

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

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

ID-100193256

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

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

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

ID-100267980

 

 

Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Image courtesy of kibsri at FreeDigitalPhotos.net

Image courtesy of franky242 at FreeDigitalPhotos.net

Image courtesy of Iamnee at FreeDigitalPhotos.net

Image courtesy of AKARAKINGDOMS at FreeDigitalPhotos.net

Image courtesy of usamedeniz at FreeDigitalPhotos.net

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Rock and an MS Hard Place

Multiple Sclerosis goes classic

ID-10077457

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.

ID-100256772

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..

ID-100261091

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.)

ID-100314486

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.

MI0003277352

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

ozzytrain

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

bowie-eyes

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

Blondie_album_cover

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…

pat benetar

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

super boys2

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.

eduardohands

(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.

ID-100216506

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.

ID-100296938

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!

ID-100261762

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??

super boys

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

 

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

ID-10086805

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.

ID-10063278

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.

ID-10020844

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.

ID-10091809

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.

ID-10024270

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.

ID-100211347

“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.

ID-100266923

“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.”

ID-100246983

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….

ID-10056130

 

Image courtesy of  farconville at FreeDigitalPhotos.net

Image courtesy of Ambro at FreeDigitalPhotos.net

Image courtesy of Danilo Rizzuti at FreeDigitalPhotos.net

Image courtesy of nenovbrothers at FreeDigitalPhotos.net

Image courtesy of posterize at FreeDigitalPhotos.net

Image courtesy of  AKARAKINGDOMS  at FreeDigitalPhotos.net

Image courtesy of  iosphere  at FreeDigitalPhotos.net

Image courtesy of  Stuart Miles  at FreeDigitalPhotos.net

Image courtesy of farconville at FreeDigitalPhotos.net

 

 

Growl, Growl and Howl

Multiple Sclerosis is ticking me off!

ID-100233538

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?

ID-10057689 (1)

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?

ID-1002556

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.)

ID-10028672

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.

ID-100207490

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?

ID-10062216

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.

ID-100262331

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.

mustache

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.

daystache2

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….

cover-half

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

Pills image courtesy of hinnamsaisuy at FreeDigitalPhotos.net

Paperwork image courtesy of Stuart Miles at FreeDigitalPhotos.net

Jail image courtesy of Sakhorn38 at FreeDigitalPhotos,net

Bear image courtesy of anankkml at FreeDigitalPhotos.net

Images of my cute nephew courtesy of his mom…

 

 

The Curious Case of Multiple Sclerosis Part 5

Bored as a Board

ID-100259540

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.

ID-100264906

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.

ID-100154488

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???

ID-100124330

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.

ID-100264514

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.

ID-100185771

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.

ID-100236677

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

ID-10055058

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…”

ID-100211580

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