Tag Archives: ms’ers

Lazy Bones

An MS think tank

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My new favorite song is a perfect song by my favorite band recorded back in 1973.  Yet, I’d never paid much attention to it before.  How can that be?

The song is 100 Years Ago by, of course, the Rolling Stones.  It is basically a look at aging which is ironic because Mick and Keith were just babies when they wrote it.  But I can’t imagine it would be any better if they wrote it now.

It’s filled with perfect lyrics like “Don’t you think it’s wise sometimes not to grow up?”(Yes Mick, I do,) “Now if you see me drinking bad red wine,” (is that even possible?) and my favorite, “Call me lazy bones..”

It’s a fun song and even if you’re not a Stones fan, (is that also possible?) it’s worth a listen.  And since we all have to age, MS or no MS, it doesn’t have much to do with multiple sclerosis.

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But the lazy bones line has got me thinking.

For a long time I’ve pondered the difference between fatigue, (incredibly terribly miserable fatigue,) and laziness.

Now my MS friends are starting to freak out at the word laziness, and rightfully so.  When you live with an invisible illness you live with judgment.  People, and by people I mean colleagues, neighbors, acquaintances, family, friends, doctors, and strangers, tend to prefer to not believe what you say is going on with you.  It’s easier for them to dismiss your diagnosis and/or assume you’re just lazy.  And it sucks.

And have you ever noticed that even if you don’t talk about your symptoms, suddenly people like to tell you what’s going on with them health wise?  When did an MS diagnosis make me a toll free medical health line? These same people don’t want any input and certainly don’t want to hear what’s going on with me medically.  They just want to vent and write me and MS off even though I’m not the one venting!!!ID-100296977

So I’m not talking about those “people” who make the lazy assumption.  I’m talking about when I try to decide if I’m lazy.

This bothers me so much that I’ve started thinking about it.

Truly, I can spend hours lying on my sofa thinking about the difference between laziness and fatigue.  (Is that lazy?)

I used to be independent. I used to be able to go to my job, work ten plus hours, do errands afterwards, come home and eat a quick dinner and THEN maybe even do laundry or go to a meeting for a committee I was volunteering on.

I can’t even imagine that now.  Slowly all that energy disappeared and before I knew it some doctor I didn’t even know was telling me I had multiple sclerosis and I started injecting myself with crazy expensive drugs.

Who’d thunk it?

So those days of being active for over 16 hours a day are long gone. According to Mick and Keith, about 100 years ago gone.

But I don’t like being inactive and so I don’t like thinking I may be lazy.  But I often feel lazy and so I start thinking and then I get more confused and start thinking some more.

Here are some of my thoughts-

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If, when I wake in the morning my whole body aches and is screaming for rest and I don’t get up right away, or get up, pee and go right back to bed to rest a bit longer, is that lazy or is that MS fatigue?

If I’m moving so slowly that it takes me an hour to shower and get dressed when I used to HAVE to be able to do that in 20 minutes in the past, is that lazy or is that MS fatigue?

If even doing the simplest errand such as going to the pharmacy and picking up a prescription is so exhausting that it’s the biggest accomplishment of my day, is that lazy or is that MS fatigue?

If it’s easier for me to just grab a bowl of cereal for breakfast rather than taking the time to put together a healthy smoothie, is that lazy or is that MS fatigue?  (For the record, I have started drinking healthy smoothies and while I know they are good for me, they haven’t helped with energy.  Perhaps I need to drink more than just three in a month?)ID-100348548

If it’s a cold, rainy Sunday and all I want to do is curl up under a super soft blankie with a good movie, is that lazy or is that MS fatigue?

If I happen to go say a few days or a few weeks or a few months without exercising even though everyone says that exercise is good for me, is that lazy or is that MS fatigue?

If someone asks me what I want to do or what my preference is on something and my brain is just too tired to decide and so I leave it up to the other person to decide despite their frustration, is that lazy or is that MS fatigue?

If I suddenly have this intense desire to bebop around my apartment while listening to say, for example, a Rolling Stones song but have to sit before the first chorus, is that lazy or is that MS fatigue?  (Who am I kidding?  The Stones give me enough energy for a whole song.  How can it not when one thinks about the time Keith Richards passed out on stage but still finished his entire set from the floor?)

If I spend some quality time responding to important emails and then reward myself with 20 minutes of dog and baby videos on YouTube, is that lazy or is that MS fatigue?ID-100128348

Does any of this even matter?  It seems to me that is does.

Which is why I spend hours resting and employing my personal think tank on the matter.  Yet, I haven’t come up with an answer.

Shouldn’t the MS scientists and peeps be working on this?  Oh right, they’re actually busy trying to cure this beast.

And so it is up to us, the individual MS’er to try to figure it out for ourselves.  And to decide what we can live with and what we can’t in the realm between MS fatigue and being active.

It’s not that my MS fatigue or laziness hasn’t accomplished anything.  In the five plus years since my diagnosis I’ve moved, started this blog and published a book.  (Well, actually, my publisher published the book.  I just wrote the darn thing.)

I’ve probably done other things too; I’m just too tired to remember what they are.

I insist on not giving up and do my best to accomplish what I can, when I can. And I probably worry about this issue more than I should.

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But the fear of being lazy continues to haunt me as I struggle to figure all this out.

Thankfully, Mick and Keith say it’s ok for me to call myself lazy bones every now and then.

I like my lazy bones; my fatigued, doing the best they can, good old lazy bones…

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Scary Brain, Scary Movie

Multiple Sclerosis meets HALLOWEEN

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I didn’t mean to break my promise a couple of weeks ago; the promise where I swore I would post a new blog soon.  Technically I haven’t broken anything.  My definition of soon can be very different from your definition of soon.  

But I am working on it and hope to have a new blog out, well, soon.  In the meantime, with Halloween right around the corner, I thought I would repost one of my oldest and most popular blogs.  

Get your dvds and some popcorn- we’re going to the movies!

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It is the afternoon and I am shuffling around my house, trying to focus.

I have my lists; all the MS helpful tip books suggest lists.

There is the to-do-this-week list.

There is the to-do-before-Christmas list and the things-I-should-try-to-do-in-general list.

There is, of course, the things-I-should-try-not-to-forget list.

But the lists and lists were not helping me focus. Oh, I know, the dishes need to be done. I will feel better when I have finished that.ID-100236758

So I start with the dishes and realize I might have more motivation if I had music going. I dry my hands and head to the stereo. But then I see my computer and try to remember if I responded to that important email I received this morning.

Yes, I see now that I did but there are some more emails to read. I get overwhelmed with the amount of junk emails and chain emails coursing through my web account and give up, deciding to play FreeCell instead.

What is up with us MS’er’s and FreeCell? Every MS’er I know is addicted to FreeCell.ID-100237073

My meds are giving me an awful taste in my mouth so I get up to brush my teeth and drink some water.

I see that I barely started the dishes and dunk my hands in the soapy dishpan yet again. And three plates and five minutes later the 8ozs of H2O has gone right through me and I am off to the bathroom. How on earth am I supposed to drink eight more glasses today?

I might as well move into my bathroom.

The fog in my brain continues. The only thing I can focus on is my lack of ability to focus. I am forever existing in this fog-like state. Perhaps because Halloween has just passed I think of the movie The Fog.ID-100362053Figures. Leave it to me to equate my multiple sclerosis to a horror movie.

But is The Fog the right horror movie? I am wandering around lost in my own little world and not feeling quite right- almost zombie like.

Yes, zombies.  Zombies are a good description. I am an MS zombie for sure. I will likely stay like this until I fall asleep where I will be alive but dead to the world for at least ten hours. Then it hits- it’s not The Fog but Night of the Living Dead.

Somehow thinking of my MS in terms of horror movies brings me comfort as I try to remember what it is I was supposed to be doing. Night of the Living Dead, that is definitely the horror movie for sure.ID-10096210

Or is it? Sometimes I just want to scream. Actually, I just want to scream a lot. Maybe my MS really is Scream? I have always been a Neve Cambell fan. But does the movie Scream completely reflect all that my MS is to me?

It likely depends on what my MS is doing on any given day. Often, it makes me think I am going crazy. I think of the classic line in Psycho, “she just goes a little mad sometimes. We all go a little mad sometimes.”

I remember all the hysterical mood swings and weird symptoms I experienced before I knew I had the disease. I remember hundreds of times of being convinced I was getting the flu due to the insane body aches, only to have them disappear, believing myself to be a hypochondriac.ID-100225595I remember the all the people in the world around me being totally off kilter but acting as though I was the one who was screwed up. Like when I had to go to my drycleaner’s several times in one week insisting that they had given me the wrong pants.

“Yes, they fit. Yes, they are the same color. Yes, they have the same fashion label and size label. But these pants have cuffs at the bottom hems. My pants don’t have cuffs. Yes, of course I would know if they were my pants or not. I will keep them as I need black work pants but one day soon someone is going to come in and say they have the wrong pants and I am telling you, I have theirs and they have mine. Feel free to call me when that happens and I will exchange them.”

My drycleaner and I had this little diatribe over and over. Funny how the other customer never realized she had the wrong pants.

Yes, Psycho is the movie. That is the one that most describes my MS. And it is appropriate and personal as when I was a teenager I had actually waited on Anthony Perkins at a candy store only ten days after seeing Psycho for the first time. My friend Heather worked at the store too and she was too freaked out to wait on him so it was left up to me. I gave him a whole extra ½ lb of penuche fudge so he wouldn’t bring out his knife and start swinging.

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Yes, Psycho feels right.

Bathroom again, but I stop to remove the pebble in my sock. But there is no pebble. What is that annoying feeling? And that one, the sudden sharp, jab in my left arm? And that one, the squeezing and releasing of my abdomen as if my stomach were in a vise? And here are those weird ear noises again- has my body been taken over by aliens?

That’s it! Invasion of the Body Snatchers!ID-100126087

That is definitely the horror movie that best describes my MS. It all makes sense now- aliens have taken over and turned me into a screaming, psychotic zombie living in a deep fog.

Finally, having this serious question answered and finishing up likely my tenth trip to the bathroom, I try again to remember what I was supposed to be doing. Oh right, the dishes.

I shuffle back and plunge my hands into the now cold water. As I do so I feel awkward and completely out of sorts. I am tired and clumsy and blinking from the glare of the setting sun. Funny how images of The Creature from the Black Lagoon begin to cloud my foggy, psychotic brain.

If your MS was a horror movie which horror movie would it be???????scarymoviecollage

Want to know something scary???  

MS Madness! A “Giggle More, Cry Less”Story of Multiple Sclerosis was named Indie Authors Library’s most popular book of September!  

Thank you to all my readers and Facebook friends who voted.  If you haven’t had a chance to check it out yet, give it a read.  

Giggles are guaranteed!

Happy Halloween from Myron, the myelin munching monster!
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Convicted Caper

Multiple sclerosis goes on the run

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As soon as I typed the above subtitle I started to laugh.  There are people living with MS who run, run well actually.  And often, they run races, half marathons and even full marathons, sometimes to raise money for MS research funding and awareness.

I’m not one of them.

I can’t remember the last time I ran.  That could be because it was a traumatic experience that I blocked or because MS has messed up my brain.  Anyway, if you’re a fellow MS’er who runs you have my support.

And my awe.

And my sympathy.

No, this blog is about a different type of running.

As in “on the lam.”

As in, away from the law.ID-100180737

Several months ago I wrote a blog (Lawbreaker) about how MS turned me into a criminal.  I thought that would be the end of the story.  I had repented of the unlawful sins I committed in that post and was now back to my law abiding, innocent self.  But apparently crime wasn’t done with me.

It started with my printer.

Yes, my printer.  I went to print something one day and my printer made this hideous, indefinable noise.  It sounded like- well, I can’t tell you because at the time it was indefinable.  But it was loud and scary and not very healthy sounding.

I took it to the computer store and the geek there-no I’m not being mean, I was at Geek Squad-defined the noise for me.

“It sounds like machine gun fire.”ID-100150936

And he was right. Me, who knows nothing about guns, had a printer that was set in the middle of a mob movie.

What was even more concerning about this was that it coincided with a car problem I was having.

I had to give up Gina Blue-my little blue Corolla.  She and her super leaky, unfixable roof were beyond due to go to that blessed parking lot in the sky.  I hope she is happy and at peace there.  I still miss her every day.

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Anyway, my mom came to my rescue and obtained a car for me to drive.

For this, I am especially grateful.  It is a very pleasant and efficient 2008 Toyota Camry, with one quirk however.  Every time I turn on the air vents, whether for heat or a/c this mysterious white powder comes flying out of the vents.

I kid you not; you can’t make this stuff up.

I have no idea what the powder is.

People tell me I should get it tested.  I have no idea where to do that.

Yes, I’ve had the filters replaced-twice- and had the car inspected several times.  No one can figure it out.  Yet, nine months after I started driving it, my car is still filled with this mystery.

The only thing I could come up with was that the prior owners must have been drug runners and there is a big kilo of something expensive hidden in my car somewhere.  Combine that with my printer’s constant gun shots, it’s hard to know what’s what.  I feel like I’m this close to having Joe Pesci and Robert De Niro show up at my door, demanding the goods.ID-100266028

Of course, these crimes were the fault of my new car and of my old printer.  But since they are in my possession I’m probably good for some kind of accessory responsibility.  The theft charges were totally due to multiple sclerosis however.

When I started my MS blog I had an awesome web guru that set it up for me and taught me how to use it.  He told me it was important to include images in my blog (they better attract readers) and showed me where to find free images.  I started blogging.

Then I started exploring.

And talking.

And questioning.

I met many bloggers who told me they get their images from the internet, all the time. If I were to broaden my scope I could come up with super funny images that would really make my readers crack up.

Yes, my web guru said this was dangerous.  But, I figured, he wasn’t a blogger and I had a bazillion bloggers telling me this was ok, especially if I wasn’t using the images to sell anything.

(Well maybe not a bazillion but close to it.)ID-10010474

And so I started scanning the worldwide web for free images.  And then I promptly got accused of stealing an artist’s conceptual property and copywright infringement and licensing violations and all kinds of scary other things.  Two different companies wanted me to cough up the bucks to make it up to them for the two images I used without permission, ie, stole.

I pleaded ignorance.

No dice.

I pleaded “other people are doing it too.”

As you can imagine, that didn’t jive.  They came back with “if everyone you know was robbing a bank would it be ok for you to rob one too?”

The irony of that is I need to rob a bank in order to pay these folks.ID-100317005

So my defense is simple poverty which is no defense at all.  Now I’m just hiding in hopes they get sick of looking for me.  Maybe if they truly come for me and expect me to cough up money I don’t have they might just settle for my car?

If they pull it apart they might find interesting property hidden inside worth way more than unlawful use of two internet pictures.

For the record, I no longer own the printer.  I had that destroyed.  The drug running car is still in my possession however and it is still covered in an unknown, possibly illegal substance.

I’d offer to pass it along to someone but I may need it in exchange for bail money….ID-100265697

FYI- When I started this blog a wise friend told me that eventually, MS was going to run out of topics to offer up.  Well, 150 blog posts later, it finally has.  Yes, it’s true-this particular post numbers 150!

I would like to say MS is done with all the weirdness that I can exploit in my blogs but I highly doubt that.

Here’s the thing- this hot summer I have sweated, bled, cried, slept, tried to balance, laughed, griped, whined and wrote.  After doing all of this I have come to the unfortunate realization that I need to step back from blogging weekly and focus on taking better care of myself.

(Learning to run would be a good start, never know when the law will come a’ calling.)ID-100153663

I will still blog as I believe it helps me to process all of the crazy. But I won’t be on a blog schedule.  This means that a new post will be posted the next time MS does something super crazy, or I get so frustrated with MS that I have to beat something and a blog makes me feel like it’s MS I’m beating.

I hope you will still choose to follow my random posts.  The best way to do that would be to either sign up for my Feedblitz Subscriber Service or by following my Twitter account @yvonnedesousa or by following my website Facebook page, Yvonne deSousa.com

I will miss your awesome comments and your weekly stats.  But I hope we will still be in touch regularly.

In the meantime, please keep smiling my friends…ID-100286821 (1)

 

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The MS Money Suck

Multiple Sclerosis gets spending

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Everyone knows that MS sucks.  You don’t need a degree to be able to figure that one out.  But, if you’re one of those science type people who need an official hypotheses I can back up this statement.

Hypothesis-MS sucks

Examination-MS patients complaining about sucky MS symptoms

Research-observation of MS patients dealing with sucky MS symptoms

Proof-MS sucks

Still not convinced?

Then there’s this; immediately after my MS diagnosis my then neurologist told me that, MS sucks. She had all kinds of fancy titles, degrees and med school debt to back her up.ID-100249751

And we don’t have to be an Ivy League grad to realize that living with MS is expensive.

Hell, living with any type of chronic illness is expensive.  Just thinking about words like insurance, pharmaceuticals, medical tests, therapy, copays, and sick time and even the cognitively slowest person (ie, dumb) starts to appreciate how costly it can all be.

Therefore we all know that MS and money clash in the poorest of poor ways.

I expected this upon my diagnosis and tried to start preparing and saving.  What did me in were the ways in which MS would leave me financially strapped that I couldn’t even anticipate.

For example, due to multiple sclerosis I am extremely temperature sensitive.  Extreme cold can be painful and extreme heat can make it hard for me to breathe.

If given a choice I prefer the extreme cold as rumor has it that breathing is pretty important.

My ideal living and sleeping temperature is 73 degrees.  And lucky for me, I live in New England and so there are several days in the year when my environment naturally drifts to 73 degrees.

Five of them, to be exact.

Yes, for 5 days a year I don’t have to worry about air conditioning or heat.

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Every other day I’m using some nasty utility company to heat things up or cool things down and as such, I’m watching good green cash blow out the a/c filled window or burn up in the fiery furnace.  Actually, to make the money suck even worse, I don’t have a furnace.  My heat is electric.  And yes, the electric company loves me, the stingy money grabbers.

Here are some other unexpected ways that multiple sclerosis is super expensive.

I have the most basic of basic cell phones- an actual flip phone.  Yes, they really do exist even if they are impossible to find.  They are officially the dinosaurs of technology and I have long been convinced that they are called flip phones because people like me are constantly flipping them somewhere.

I have accidentally flipped my phone across the room several times.

And dropped it on the ground.

And banged it against a wall, car or furniture.

One would think that replacing a boring, basic phone would be cheaper than replacing a fancy/schmancy updated one.

One would be wrong.

Very, very wrong..ID-10034354

Moving on-cognitive difficulties are also super expensive.

Here are two pricey examples.

Because I’m constantly flipping my flip phone I worry about replacing other pricey electronics as well. It’s not unlikely that I will drop my laptop and so I always get the insurance protection on it.

This past January I called my geeky friends at Geek Squad and wrote down all they told me about renewing this policy.  The first thing I had to do was respond to an email they would send me on a particular day.

On that day I received the email and looked at my notes to see what I needed to do at that point.  What I needed to do was renew the policy as my notes clearly stated.  What I did was delete the email, thinking it wasn’t important.  Later I realized that the policy was canceled and now my little old computer, also ancient at 6 years old, is alone in the world with no protection and clumsy me acting all dangerous around it. ID-10075806

We are just one unexpected trip away from complete financial, technical destruction.

While trying to build up a writing career I applied for a grant that would help me out financially while I wrote the next great American novel masterpiece, you know, like 50 Shades of Grey.  I read the rules for applying for the grant several times.  Then I read them several times again.  I updated my grant submission and just before hitting send, I checked the rules yet again.

And several days later I realized I had messed the whole thing up and my submission would likely not count as I hadn’t followed the rules.  And the deadline had passed.  That little bit of cognitive difficulty cost me $5000.

(Well, $5000 assuming I would have been awarded the grant as opposed to other ambitious writers but I choose to assume I would have won if not for that damn costly MS!)

Many people with MS also live with another serious illness.  Mine is germ-a-phobia.  Yet, MS makes me constantly exhausted so I need a lot of help with cleaning. Most of this help comes in the form of disinfecting wipes.  And these wipes don’t come cheap.

Luckily I can sometimes find coupons to use for purchasing these amazing energy saving, germ killing power house cloths.  And the coupons do help, if I remember to use them.  Which, of course, I never, ever do.

While talking about shopping let’s take our meager pennies to the grocery store, shall we? ID-10043818

I try and try to be a saver and the grocery store is no exception.  But disinfecting wipe coupons are not the only coupons I forget.  I forget all the coupons.  I could deal with that, really, how much do coupons really save?

The problem is that I have picked up this bad habit of buying the wrong thing.

Even as I’m looking at an item and putting it in my cart.

Even as I bring it home and put it away.

I will still see the item I needed.

Then I open said item only to discover that it is the wrong thing and thus, unusable. I would return it for the right thing but the product is now opened and the receipt was trashed a long, long time ago.

It’s enough to make a person crazy.ID-100178602

Or, it would be if we MS’ers didn’t already feel crazy.

Thankfully, there is a remedy.

It’s called wine.

I try to save there too.

I bought a bottle recently and saw a promotion where if I save my receipts and bought more bottles I could get a rebate- $3 off two bottles, $6 off four etc.

I was so pleased by this that the next time I was at the liquor store I bought that specific bottle.  I can fight the MS money suck after all.  Wine is crucial and why not get some money back when I drink it?

I was so pleased with myself and my savings effort that I was home and had the bottle open before I realized that I had forgotten the damn receipt!

Good thing the rebate called for big bottles of wine.  I’m going to need them……ID-10012629

Hi friends,

                I would love to hear of some of the unusual ways MS is robbing your piggy bank.  Feel free to share your thoughts in the comments section below.

                Also, my friends over at the Accelerated Cure Project asked me to remind my readers of the fabulous research they are doing with the I Conquer MS project.

                iConquerms.org is a patient centered, patient powered research initiative that needs the help of all of you!  And unlike most things MS related, it won’t cost you a penny!

Please check them out  iconquerms.org

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MS Hips DO Lie

New multiple sclerosis symptoms go musicalID-10019101

I was sitting in a meeting a couple of weeks ago when my left hip started to vibrate and shake.  It felt like how it felt in the old days when we had pagers or antiquated cell phones attached to our belts.

Immediately I went looking for my phone.  Did I forget to turn it off?  Was it on silent mode in my pocket?  This was very possible as I have said over and over, my cognitive abilities stink and so who knows where anything is on my person?

But no, my phone was completely shut down and resting lazily in my purse which was slung over the right side of my chair.  My hip continued to hum.  Was this a new MS thing?

Ironically, I was at an MS meeting and was surrounded by fellow MS’ers.  I wanted to ask them what they thought but what if this wasn’t MS related. How do I explain this bizarre vibrating going on?

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What if they thought I was crazy?

What if they thought I was a perv?

This vibrating, shaking hip thing continued throughout the afternoon and made me think of a Rolling Stones song, (of course it did,) called “Shake Your Hips”; specifically the line that says, “do the hip shake thing.  Do the hip shake thing babe.”

So now, while I was trying to concentrate on the meeting, I was also dealing with a hip dancing on its own and had an awesome Stones verse stuck in my head.

Since that meeting other body vibrations have started to occur; the right hip, one foot but I can’t remember which, (next time it happens I will clarify), a leg, (ditto on which) and back to the left hip again.

It would be nice if these limbs were dancing in a sequence but alas, since this is probably multiple sclerosis, of course they choose not to cooperate.

It might be for the best. Most dance places don’t get exciting until after 10 PM and I’m always in my pjs by then.ID-10042722

Then recently, I got mad at something.

Really mad.

Really, really mad.

So mad my body started to shake.

I had never had that happen before although I have heard people talk about it.  My body was doing its own thing once again, vibrating in parts and shaking all over.

When I get in a bad MS way I turn to my faith.

If I’m so bad off that I’m being way too stubborn to appreciate God’s help, then I turn to humor.

And when I am so grouchy that anyone who tries to make laugh might get their head bit off, it’s then I turn to music.ID-100146496

And so, I couldn’t help thinking of Shakira’s song, “Hips Don’t Lie.”  Except, as far as I was concerned, my hips were lying.  Since they couldn’t be bothered to tell me what they were doing, they were lying!

At least the line in her song fit, “ahh baby when you talk like that, you make a woman go mad…”

And mad I was.  I was mad at MS, I was mad at the world, I was mad at my weird body parts.

I was mad that when my hips were shaking they didn’t look anything like Shakira’s hips.

It’s a cruel world we live in folks.

One song sung by a woman too beautiful to be believed was not enough to get me out of my crabby place.   More shaky songs came to mind, like the Cars “Shake it Up.”

I laughed at the line that says “do the move with the quirky jerk.”  Oh yes, that’s one move my body does know.  I was quirky jerking all over the place…

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As I was letting my body do this weird multiple sclerosis dance across my living room, I grew tired, spent even.

I felt all shook out.

I felt all shook up.

And then, then I thought of the music of my Elvis childhood.  One more song might get my body to relax and get the anger out of my nerves.  I looked up “All Shook Up.”

Did you know it’s an MS song?

Seriously, check out the lyrics if you don’t believe me.  MS gems abound like, “Well, my hands are shaky and my knees are weak, I can’t seem to stand on my own two feet.”

And “My tongue gets tied when I try to speak, my insides shake like a leaf on a tree.”ID-100289380

Supposedly Elvis recorded this song about falling in love but I don’t believe it.  I have been in love, lots of times, and it never felt like this.

Then again, I am single so maybe I wasn’t doing it right?

The point is, before I knew it, I went from being mad at the world, to dancing my strange MS body around my apartment to watching old Elvis videos on YouTube.

And I felt better.

So, are vibrating body parts and shaking limbs more symptoms of multiple sclerosis?

If so, then I guess that’s just how it goes.

I try to stay positive and so I came up with this-

If my body is moving around on its own, well that’s a lot less exercise I have to do!

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Meet Me in the Windy City

Chicago MS Summit  Part 1

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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.”

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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!

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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!

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Crasher

A new multiple sclerosis mode of being

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And then there’s Crasher.

You KNOW Crasher.  I know you do.  Deny it if you want but I bet you’ve got the bruises to prove it.

Crasher is not Crasher as in “I’m so wiped out. I’m just going to go crash for the next five days,” although if it was, that would be a good Crasher.

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And no, Crasher is not responsible for crashing the best parties or events, crashing them early, while the alcohol is still free.  Oh, how I wish that was the Crasher I’m talking about.

No, Crasher is yet another multiple sclerosis symptom that takes over your whole body and turns you into a whole other mode of being.

I’ve mentioned some of these before.

There is the child I have written about.

“Daddy- I need to go potty RIGHT NOW!”

This child intersects with the grandmotherly little old lady.  “Can you get me a sweater dear?  I’m just going to drink my tea and rest my legs for a bit.”  (The Curious Case of Multiple Sclerosis Part I)

There is Oscar- content to be mean, grouchy and if necessary, to hide away in our personal trash cans in order to protect those around us from our green, foul mood.  (Call Me Oscar)ID-100217470

There is the zombie mode- shuffling about and existing as one of the super undead.  (A Zombie Goes Down the MRI Tube)

Speaking of super, resembling but quite different from the zombie mode is Super Blah- a super hero of utmost strength of unthought and undetermination.  Capable of coming up with no thoughts of your own and if any thoughts do arise, they probably aren’t even made up of real words but fake ones like unthought and undetermination.  (Super Blah)

But now, I have finally accepted and proudly outed- Crasher!

Before this, the Crasher mode was just called clumsy, something I had been my whole life.

As a child, a real child not an adult in MS child mode, I was always covered in bruises, mostly from falling off of stuff I climbed to prove I wasn’t clumsy.ID-10061137

On a high school ski trip the instructor pointed to a tree way to the left of me on the beginner trail and said, “you’re not going to ski into that tree are you?”  I assured him I wouldn’t just seconds before I promptly did.

(Okay- that didn’t really happen to me.  It actually happened to a friend of mine but it certainly could have been me if I wasn’t already sliding down the bunny slope on my butt.  But it was too good an example not to share.)

At the best job I ever had my coworkers took to calling me “Grace” as I tripped around the office, dropping files left and right..ID-100207487

So it was not surprising that desperate for comfort upon learning of my multiple sclerosis diagnosis I asked the neurologist if MS was the reason I was so clumsy.  My friend giggled when the doctor replied “absolutely not.”

But that was five years ago and things that we know about MS have drastically changed.  And here is one thing I do know about MS– it completely, unequivocally, absolutely ramps up my clumsiness!

It ramps it up so much that my clumsiness becomes it’s own persona, way tougher than “Grace.”  “Grace” will no longer do.  Crasher is definitely more like it.

Clumsy is as clumsy does and in my world, what clumsy does is cover me with bruises sometimes just walking across my living room.

Crasher shows up when I am particularly fatigued physically but also incredibly stubborn mentally.

On these days, when I refuse to give into the tiredness and try to go about my world, that’s when I turn into Crasher, tripping, dropping things, throwing things, walking into things, etc.

When I’m perfectly calm and without provocation suddenly throw something I’m holding across the room, that’s Crasher.ID-10043444

When I stub my little toe on the coffee table leg three or four times in one day, that’s Crasher.

And when I walk into a wall just because it’s there?  You guessed it- it’s Crasher.

When I unexpectedly fall and crash into the ground? Let’s say it together-Crasher.

Before I totally blamed the Crasher persona on MS, I decided I needed to know the truth on this one. Was that early neurologist I saw five years ago correct?

I am stubborn and so I decided to do some research. I am proud to report that what I discovered was that she was WRONG!!ID-10056127

Right away I found a website (The McFox.com) that described an early MS symptom as “uncharacteristic clumsiness.”  What does “uncharacteristic” mean to you?  To me, it means I’m blaming MS!

Just one website didn’t seem conclusive enough and so I researched further. (I was likely in one of my random “think I’ll goof off on the web modes”- a cross between the zombie persona and Super Blah.)

I found that HealthyWomen.org talks about the MS symptom of balance and coordination problems although it would seem to me to be more of a lack of coordination problem but who I am to disagree with the web.

And MerckManuals.com refers to “clumsiness of leg or hand” as one of the many symptoms of multiple sclerosis.

So there you have it, Crasher is yet another multiple sclerosis personality that we MS’ers must accept.  MS’ers are starting to have more personalities than Sybil.

But don’t fret, I’m used to Crasher.  The awkwardness of my growing up years has prepared me well.ID-100200833

I’m used to being covered with so many bruises that I look like rotten fruit.

I’m used to tripping on air- I’ve almost perfected it actually.

And I’m used to crashing- both into things and crashing as in resting after I have crashed into things.

I’m tough. Crasher is no match for me!

But the greatest comfort I take from this knowledge? Ha first neurologist- I was right!

And I didn’t even go to medical school!

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Keep Using Your “I” Words, Baby!

A Multiple Sclerosis VOCABULARY

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

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

I hope you find it helpful my friends……

Some people say that good things come from bad.

Many others say that is crap.

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

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

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

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

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

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

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

Let’s start with my favorite-“ish.”

I love “ish.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Tumble Bunnies for Easter

A retro MS post for spring

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

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

I hope you find my cleaning dilemma amusing dear friends!  

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

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

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

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

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

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

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

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

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

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

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

ID-100182605I escaped.

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

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

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

The messiness grew.

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

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

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

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

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

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

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

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

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

Frankly, I’m afraid of them.

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

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

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

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

But it is the major stuff that gets me.

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

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

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

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

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

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

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

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

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

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

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Rock and an MS Hard Place

Multiple Sclerosis goes classic

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I am a child of classic rock.

Well, actually, that’s not really true.

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

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

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

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

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

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

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

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

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

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

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

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

By every she-rat in this town

Monkey Man by the Rolling Stones.

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

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

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

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

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

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

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….