Category Archives: MS Symptoms

The Curious Case of Multiple Sclerosis Part 3

Can’t Stop Going

Last night happened to be one of the worst MS bad bladder nights I’ve had in a long time.  As such, I feel wicked crappy today. Or, I guess I should say, wicked pissy.  

This is getting old, very old.  I’m so frustrated that I thought I should write a blog about it.  Then I remembered I already did.  

So for those of you who can relate to MS really pissing you off, this old post is for you.

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One would think that a subtitle called “can’t stop going,” would refer to a good thing, something you would find on an inspirational poster, or in a pop song geared towards the tween set; an affirmation if you will. But when it comes to this week’s blog, you would be wrong.

Very wrong. So wrong that I may just want to get violent and punch something wrong. When something makes me want to become violent, what can I do but write about it? At least writing keeps me out of jail and protects my already tingly fingers from more aches.

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When I say “can’t stop going,” I am actually referring to one of my insidious MS symptoms, bladder issues. In my case, I have to use the bathroom constantly and for normal people, that is the end of the story. You go, you’re done; at least for a few hours.

Not for me. No, my bathroom going trips have become so constant they are hard to believe. Which is why they are part of my series on The Curious Case of Multiple Sclerosis, blog posts that explore the particularly cruel irony of some aspect of living with MS.

(If you are bored, see prior posts Part 1 that discusses aging and Part 2 that discusses the difficulty of maintaining a healthy diet.)

But back to my current problem. If this rant sounds familiar it is likely because I have ranted about it before, a lot. I have even used the line, “these bladder issues are really starting to piss me off.” (Pun totally intended.)

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The line is not mine but my sister Laurie’s and before I used it as I thought while accurate, it was also funny. That was when my bladder issues happened at night and while it made trying to sleep frustrating and difficult, it was manageable; as long as there was something good on TV at 3 AM.

But lately, the frequency of having to go relentlessly and of then not going completely when I do go, is happening throughout the day as well. My bathroom trips are turning into revolving doors. In the time it takes me to wash my hands and leave the bathroom I have to go again and repeat the process.

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Really, what is the point of going at all?

The irony of this is water. Lately, in fact just as this issue started acting up, all I hear is how good water is for you.

I know this. I have given up diet coke and am drinking a lot more water. I have also learned to drink it earlier in the day to avoid the night problem so I can sleep. Now I just need to spend the day in the bathroom.

The medication I take for this problem does help but only a little bit. And it causes wicked dry mouth which means more water. Seems everywhere I look I am reading articles on how dehydrated people are and how crucial water is to your diet. Most people can handle this added H2O intake.

Me, I can handle it great. As long as I don’t need a life outside of the bathroom.

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I should discuss this with my neurologist but as I have mentioned before, he is kind of cute. How can I possibly talk to him about this? And even if I did, I am afraid the next step in treating this issue will involve tools that I don’t even want to think about. (Private message me if you have questions about this.)

But I know that I should bring it up and I probably will at my next appointment. (Maybe by then it will have gone away?) Until then, how do I deal?

One MS professional told me to do Kegel exercises. In case you aren’t aware, Kegel’s are pelvic muscle exercises Cosmopolitan recommended in the 80’s for a more exciting benefit. In a Kegel irony of their own, they were developed by a scientist, which likely makes you unlikely to be interested in the exciting benefits.

(Again, private message me- I am trying to keep this blog at a PG rating.)

The thing about Kegel’s is that they are super easy to do and can be done anywhere. Even in the bathroom.

The MS irony here? I forget to do them! Even when I write myself a note, I forget to read the note! Easy exercise- rare and good. Forgetting the exercises-very, very bad.

I heard that this particular bladder problem can lead to UTI’s which are also very, very bad. One way to prevent that is by drinking more water. (No, I am not kidding. According to the internet, that is a legitimate way to deal with this problem.)

Another way is to eat cranberries. I am a New England girl and so cranberries are my world. I can even tell you how they are harvested. Oatmeal raisin cookies? No way. Oatmeal cranberry cookies- awesome.

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But I am on a health kick so I decided I would get my cranberries in an organic, non processed, no sugar way. Raw cranberries are a little bitter and so I poured a glass of super healthy juice. And then I immediately spit it out as it was disgusting.

Apparently, even for people born and bred in cran country, you still need a little sugar to appreciate them.

So what’s a girl to do? I added cranberry tablets to my daily meds list which meant more water to get them down and then headed to the busiest room in my house. If you are looking for me or my TV, we have permanently moved into the porcelain and tile room.

And if that pisses you off, well, you likely have a bathroom of your own…

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One Pill or Another; Not Gonna Getcha, Getcha, Getcha

A tale of multiple sclerosis

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I dropped a pill while I was driving.

My fault for multi-tasking.

So what if I was driving, texting, eating pizza, grabbing the pill AND trying to open my water bottle?  My neuro-psychological testing did show that my multi-tasking skills were pretty much shot.

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Before you panic, I’m exaggerating.  I wasn’t really texting and was only thinking about eating pizza- perhaps for lunch.  And I was stopped at a red light.  But there were people behind me when the light turned green and so I couldn’t locate and pick up the little pill within the 5 second rule that claims that no matter how disgusting my car mat was, I could still swallow the damn thing.

5 seconds was not enough time to even pull over, park and find the pill and so I decided to leave it be.   The problem was, that was the only pill of that prescription that I had with me.

I had put it in a little plastic case and now it was under my brakes, hanging out with old M&M’s and stale cracker crumbs.  (You know those commercials that say M&M’s don’t melt in your hand?  Well, let me tell you, they do melt on your car mats if the temperature hovers over 90 degrees and you’ve stepped on them a time or two.)id-10046558

If I had brought the pill bottle I could just grab another one but I hadn’t brought all of my prescriptions with me.  I couldn’t.  Where would I put them?  I drive a Camry, not a mini-van.

This little bit of clumsy means I would go without that pill for one day-no biggie.

But it was.

See, this particular pill is one I take because my MS disease modifying drugs give me wicked aches, which means I need to take Aleve to help combat them.  Aleve gives me wicked bad heartburn which, it turns out, is not only terribly uncomfortable but dangerous in constant measure.  The pill I dropped was a prescription super duper antacid because Larry the Cable Guy has no idea how difficult MS heartburn is compared to his regular old tailgating heartburn.

Who knew the guy was such a wimp?

I spent the day with the horrible heartburn which meant no pizza for lunch which meant nothing really for lunch as I couldn’t remember foods mild enough to eat that my stomach would tolerate.   I did try.  That chocolate shake seemed mild enough but no….

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It seemed silly to stop somewhere and buy over the counter antacids because for one, they are lame and for another, I’ve got about four open bottles at home and what a waste to buy another. In fact, the bottles I have I probably did buy on the road one day after messing up the prescription one.

By the time I got home I didn’t know if I should take the pill so late in the day. I mean a fresh one, not the one combined with beach sand and gravel.  It was supposed to be a shot night which meant no Aleve which meant screw doing my shot which meant there went my Mon/Wed/Friday schedule I tell my MS nurse I stick to.

I had plans the next night where I wouldn’t get home until late which meant if I did the shot then, Aleve or no Aleve, my next day would be ruined by post shot aches-the later I do my shot the worse the aches are.  And so it goes.  If I missed that then I would be really off schedule on the important drugs all because I dropped a slightly less important one.

id-100374013This is one of the ways MS likes to mess with me.  Dropping a pill shouldn’t be a big deal in the grand scheme of things.  But it does cause some altering and resetting and re-balancing and re-figuring for the next 48 hours or so.

It reminds me of the time I borrowed my friend’s GPS and accidentally took a wrong turn.  The device freaked out and started stating RECALCULATING in seriously important letters and tone.  It was kind of funny how upset it got; I started purposely taking wrong turns just to shake it up a bit.

This is what I needed to do with my drug taking schedule- RECALCULATING!  RECALCULATING!

And in this case it was just a pill due to a pill due to my MS shot!  I can’t even think about what would happen if I dropped one of my actual shots.

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(Well, probably nothing- they have a little cap on them that keeps them sanitized until you plunge them into your butt or arm or tummy or wherever….   You could drop one into a well, rappel down the side of the well, fish the shot out -all of which you would do because those things are ridiculously expensive- and still stab yourself with the injection.)

So what does this little tale have to do with MS?  I offer it to explain the unusual way MS insists on taxing our minds, keeping our brain cells working so to speak.  That constant RECALCULATING is exhausting!

And people wonder why my MS friends and I are so freaking tired all the freaking time!!!

PS   Does anyone want to help me clean my car?  There’s some free M&Ms in it for you…id-100135056

 

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If you have Trouble with too much Sleep, you might have MS

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This blog post is dedicated to my chronic illness friends who have trouble sleeping. I feel ya.  I have trouble with sleep too but my trouble is a little different….

I love sleep.

I love my bed as it is super comfy for sleep.

And after I pee 10-12 times I sleep pretty well.  It’s quite coincidental actually, as I usually get about 10-12 hours of sleep.  One hour for each time I was forced out of bed and into the bathroom “one last time…”

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This isn’t a new thing as sleep and I have always gotten along- too much really.  I’ve never been known to sleep walk. And the jury is out on if I snore, depending on whom you ask.

But I have a pretty active sleep life.  Despite the lack of sleep walking one time several years ago I woke up, brushed my teeth, and took a shower.  When I went into my bedroom to get dressed I realized it was only 3AM.

Another time, a fingernail on my left hand scratched the letter Y onto my right hand.  I noticed when I woke up.  I kid you not, the letter Y, first letter of my first name.  It was as if part of my sleeping body wanted to remind the other part of my identity.

And then there are the dreams.

They are super intense, almost like a movie.  In fact, one night I dreamed I was watching a movie and in the dream about watching a movie was an actual movie!  If I wasn’t so tired when I woke up I should have written out the movie’s screenplay. Maybe if I had, I would be too busy hanging with Bradley Cooper and Matthew McConaughey to have time to write this blog.

BUT, I digress.  (I have MS-it’s what I do.  My whole life has become a digession.)

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Anyway, enter multiple sclerosis into my active dream life.  I once asked my first neurologist if very intense dreams could be part of the reason for my very intense fatigue.  She said no, because if I’m dreaming, I’m in very restful REM sleep.

Really?  It doesn’t feel so restful when I’m scarring identity marks onto my body.

(Note- This was the same neurologist who told me if I was having trouble describing my cognitive issues I must not have any.)

After a pretty crazy and sometimes overwhelming month I recently gave myself several days of rest.  I took it easy and tried to catch my brain and body up on life.  I did use the time to restart an exercise routine I hope to (FINALLY) keep up with.ID-100361589

Four nights after this self-imposed relaxation exile, I woke up feeling pretty good.  Except for my upper left arm which felt like it had been punched, hard.

I was alone and there was no obvious evidence that someone had broken in and beaten me up.  Did my right arm do that?

There wasn’t any bruising but it hurt.  It would make total MS sense if I had done a shot in that area in the last couple of days.  I hadn’t. I had done butt shots but my butt felt fine.

I chalked this up to more MS weirdness and mostly just found it fascinating.

Until the next night when my dreams were out of control.

There was the first dream which is a regular one.  I’m at my old job and working part-time to help them get organized and before I know it I’m running the whole show, months have gone by and my old boss refuses to pay me.

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Typical dream stuff.

But the second dream involved my needing to go to my hometown 30 miles away and choosing to bike there as a means of transportation.  I make it about 20 miles and then start to cry.  Someone in my dream gives me a ride and then when I have to come back I decide to bike again.  But after ten miles I’m crying and luckily find a bus to give me a ride.

The reason why this was so weird is anyone who knows me knows that I’ve never been much of a bike rider.  If I had to get somewhere 30 miles away I would do better walking there than biking.

Not hiding tooth

Not hiding tooth

I think it comes from the trauma of a bike accident when I was ten that caused me to chip my newly developed bucked tooth, creating a super goofy smile that lasted well past my braces.  Any type of fix dentists did wouldn’t last and the image did nothing to help my general preteen nerdiness.

Hiding tooth

Hiding tooth

Or perhaps, my lack of bike skills come from my lack of balance issues which might be early traces of MS?  Except neuro #1 also said my clumsiness had nothing to do with MS even as I was accidentally walking into a wall during my balance test.

Anyway, the morning after my bike dream I woke up hurting all over as if I really had tried to bike 60 miles in one day!

How does THAT happen?

My thighs hurt.

My butt hurt.

My feet hurt.

My arms hurt.

Even my hands hurt.

Everything hurt as if I had gone on an extensive bike trip.

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I have memory issues too and couldn’t remember everything I had done the day before but I’m pretty sure pedaling away wasn’t part of it.

I don’t even have a bike.  There is a cute girl’s bike with a kid’s helmet in the community storage area of my building. Did I take that out for a spin and forget?  But I checked.  The flowery pink bike still had the same dust on it it’s had since I moved in.

So what’s going on?  Has my brain and my sleeping brain decided to conspire to make me crazy?

Has my imagination gone off the walls to make my body crazy?

Am I actually crazy?

Oh wait, I have multiple sclerosis.

Of course I’m crazy!!!

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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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Another Christmas? Another 12 Days of Christmas, MS Style

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I love Christmas.

I love Christmas songs.

But personally, I don’t love the 12 Days of Christmas carol.  I find it obnoxious.  Recently however, I learned that it was actually an important and secret song.

Folklore has it, that this carol was written in the late 1700’s in England as a code to help children study their catechism as Christianity was forbidden at the time.  A partridge in a pear tree represents Jesus Christ, two calling birds represent the apostles Peter and Paul, three French hens represent the Holy Trinity, etc.

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Weird, as my grandmothers always taught me that the Holy Trinity was Portuguese, but what can you do?

As a devout Catholic who totally gets the reason for the season, I feel bad calling the song obnoxious when it seems like it should be something to be appreciated, even just slightly.

Kind of like how there was a brief time when I actually appreciated multiple sclerosis.  And by brief I mean minutes, no, actually seconds.

This was when I received my diagnosis after I had diagnosed myself via the internet as having either early onset Alzheimer’s disease or acute and untreatable insanity.  MS was actually a relief at that moment.

Now it is just absolutely obnoxious and that is on one of its very rare good days.

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Since I am in the Christmas spirit all year long (but now that it IS Christmas, it is ok to be in the Christmas spirit) I thought I would combine the two.

So here friends, is a multiple sclerosis Christmas carol, obnoxiousness and all.

On the first day of Christmas MS brought to me: one ach-y bod-y

On the second day of Christmas MS brought to me: fingers all tingly

On the third day of Christmas MS brought to me:  three MS hugs

On the fourth day of Christmas MS brought to me: lots of blurry vision

On the fifth day of Christmas MS brought to me: brain completely spacey…..

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On the sixth day of Christmas MS brought to me: every day so sleepy

On the seventh day of Christmas MS brought to me: feeling kind of dizzy

On the eight day of Christmas MS brought to me: bladder very leaky

On the ninth day of Christmas MS brought to me: four shots so nasty

On the tenth day of Christmas MS brought to me: head feeling crappy

On the eleventh day of Christmas MS brought to me: legs acting lazy

On the twelfth day of Christmas MS brought to me: balance not so steady-

legs acting lazy, head feeling crappy, four shots so nasty, bladder very leaky, feeling kind of dizzy, every day so sleepy, brain completely spacey, lots of blurry vision, three MS hugs, fingers all tingly, and one, ach-y bod-y…..

Let’s sing it together, shall we?ID-10028320

NOT!

Ahhh friends, a very healthy and Merry Christmas to you all.

And for my non- Christian friends, may you have a healthy and happy season of all things good and not MS related!ID-100277785

PS- the girls in the Christmas hats aren’t me although I do own one and it does look pretty cute on me if I do say so myself.

The singing sisters aren’t me either….

 

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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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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 Child’s Play

Multiple Sclerosis no concentration

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I love games; always have and pretty sure I always will.  And no, I don’t mean people mind games, the stuff of drama and social network craziness.  I mean good old fashioned board games.

When I was 5 I was playing Candy Land with my grandmother.  Since she didn’t speak English I figured she would be clueless if I cheated.  Of course she would believe that when I picked a card with two blue squares it suddenly meant that you could jump six blue squares.  She caught me and I got a reprimand.  She spoiled me so it wasn’t too serious but I never cheated again and continued to play.

As an adult I bought my friend’s 9 year daughter the game, Barbie’s Dream Date. I would never buy a girl such a game now but I was poor and stupid then. Anyway, the idea behind the game was that Barbie had to get all these things before she could go to the prom- shoes, a dress, a limo, a date.  I was playing the game with the girl and her little brother and I was losing badly.  Halfway through the child shouted, “Yvonne, you still don’t have a boyfriend!!”

Potential boyfriend?

Potential boyfriend?

Story of my life kid, story of my life.

The point being, that I still think games are a fun way to spend some time.  But trust me; it doesn’t matter if you’re 5 or 50; if you are playing with me I’m going all in.

Turns out I’m pretty competitive and whether I’m having a wine filled game night with my friends or I’ve got a vicious game of Chutes and Ladders going with my nephews, expect no mercy.  I don’t care how cute you are.

My game closet

My game closet

This weekend however, my competitive gaming fell to a new level of embarrassment when multiple sclerosis got involved.

My cousin Kelly and her three kids came to visit.  There was Ashley, a teenager, Noah 6 and Lucy, 7 and three quarters as she proudly told me.  When Lucy came to visit last summer she offered some great MS perspectives that I wrote about in the blog, Out of the Mouth of Lucy.

On this visit we spent the first part of day one at the bay beach and after showers and some iced tea I promised to play a game with them.  The choices were Go Fish and Memory which used to be called Concentration when I was a kid.

Why do the powers that be insist on monkeying with perfection?

My preference was Memory.  I could have played the adult/host card to get my way but neither game actually had that card.

So I played the MS card which yes, believe it or not, works with kids.  I told them that my doctor wanted me to play games to help improve my memory and that argument got me the game of my choice.  Not before Lucy had a ton of questions about my doctor, my medicine, my treatment and other things but still, Memory was on!ID-100297281

This is the game where cards are turned over and you have to turn them two at a time to try to make a match.  Noah and I tied for the win with 9 pairs each.  Lucy didn’t do too badly with 8 pairs of her own but I won!

Even if I had to share that win with the adorable Noah.

The first beach and the game must have taken away some of my brain skills as later we drove to an ocean beach where they were desperate to see seals and I was desperate to show them some.  Standing on the ocean bluff I saw a grouping of birds.

They asked if the birds were seals.

“No,” I told them, “those are birds.  I’m a Cape Cod girl and I see seals all the time so I would know.”

Since everyone around us was pointing and smiling at the group Kelly wasn’t so sure.  She took the kids down to the beach where they saw, and from my perch I finally recognized, what was actually a large pod of seals.

The dots are seals

The dots are seals

What was wrong with my brain??  How fried could it get from one day at the beach?  So fried that I can no longer tell the difference between birds and seals?

This was an incredibly embarrassing faux pas that I eagerly blamed on MS.

Day two of their visit involved walking, whale watching and visiting other family and not only was I wiped out, but my company was too.  Back at my house after the long day, I emerged from the bathroom after brushing my teeth to find everyone was fast asleep.  Even Ashley, the teenager who usually stayed up until all kinds of crazy hours was completely passed out on the sofa.

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That means that either they were beyond spent or I take a really, really long time in the bathroom.

My cousins left the next morning but not before we had to play Memory one more time.  And that game was an epic fail.

I couldn’t remember where anything was at all, even the cards closest to me.

fox

If that wasn’t bad enough, everything looked the same- the fox looked like the cat, the duck looked like the dog, the lion looked like the rhinoceros.

And it wasn’t just the animal pairs that were messing me up.  The apple looked like a heart and the kite looked like the leaf.

I couldn’t even remember the card that I kept accidentally turning over as it kept sticking to my knee.leafkite

I was such a sorry competitor that the kids felt bad for me.  They kept trying to give me their pairs but I refused!

I didn’t need their cute sympathy.  I was going to make a comeback.  MS or no MS my brain was going to pull through. I would rally and sweep this game!

In the end, Lucy won with Noah a close second.  I had one pair, coincidentally the birthday cake pair, a favorite of mine.

And I think I only had that as the kids might have purposely isolated them so I would turn them over.  Either because they felt bad about my pathetic showing or to see if I really would eat the birthday cake pair as I promised if it was one of the pairs I got.

(I did nibble on it to test its sweetness but I was too overwhelmed with shame to feel like I deserved a cake, even if it was just a cake on a card.)

cake

The only thing that made me feel better was the fact that this too must be the fault of multiple sclerosis.  The more tired I got from a weekend of hanging out with awesome family and doing fun things, the more the cognitive parts of my brain were going to make me pay for it.

In my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis, I talk about how instead of the involved neuropsychological tests doctors make MS patients take to determine their cognitive abilities, they should just make patients play FreeCell instead.  I argue that would be an easier way to determine how a patient’s brain is doing.

I would like to amend that now.  Instead of FreeCell, the best way to see how a patient’s brain is doing is by getting them to play Memory with some kids.  Memory is definitely the way to go.

And while I’m furious that MS ruined my Memory playing skills that morning, it was still fun. It would have been more fun if I won but what can you do?

MS is no fun.

Losing at the Memory game is no fun.

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Having a fun time with fun people is fun.

Just make sure you get lots of rest as soon as possible.

The next time Noah and Lucy come to visit I will be well rested and it will be Memory war.

And, unlike MS, I take no prisoners!!

My blogs are always tongue in cheek my friends and I had a blast with all four of my cousins.  I may not be able to always keep up with the energy of young Noah but I’m sure going to enjoy trying!

shellshop

 

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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!

Yea!ID-10057662 (1)

 

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If you’re in the Wrong Airport, you Might have MS

Chicago MS Summit Part II

Part 1 of this post appeared on my blog last week and is titled,

Meet Me in the Windy City

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

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I surprisingly still had a lot of energy after the summit ended. Maybe I shouldn’t have been so surprised as I had taken one of my legal speed (ooops, I mean prescription stimulant) pills that morning.  I was glad I did.  The day was beautiful and I wanted to explore a little of the city.

I had heard that Navy Pier was only a mile or so away and while I didn’t know what Navy Pier was, it sounded fun. Problem was, I didn’t have directions and I only had two hours to explore.

I walk better than I stand and one mile is no big deal. But due to the time and no directions issue I chose to take a cab there and then walk back.  The first cab I spotted was driven by an Asian man who may not have spoken English well.  I asked if he would be willing to take me to Navy Pier, feeling bad that it wasn’t a huge fare for him.  He waved me in.

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We drove for a bit and I checked out the famous Chicago architecture.  Then we were stuck in traffic.   Up ahead I saw a huge building with the Navy Pier sign.  It was then that the cab driver said “traffic bad.  You walk. You get out!”

Some people may have been offended but I thought it was pretty funny; especially since he might have been trying to save me a bundle because as we sat in traffic the meter was running.  I had never been kicked out of a cab before and I crossed that off my bucket list.

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After exploring I did walk back to the hotel and met my fellow bloggers in the lobby for drinks, Chicago deep dish pizza and lots of fun conversation. One of the positive things about multiple sclerosis (yes, I said it.  I said positive and MS in the same sentence.  It’s rare but possible to do that,) is the new friends you can make on the MS journey. I’m grateful for all of them.

When fatigue finally crashed into me like a freight train, I faced a dilemma.  There were to be fireworks that night and some of my fellow bloggers were going.  They encouraged me to join them.  I wanted to go but MS concerns overwhelmed me.  Despite the throbbing in my legs I could probably walk to the fireworks well enough but didn’t think I could stand through them.  And I was tired.

One blogger had a wheelchair I could use to sit in during the display. (You know you’re at an MS summit when someone has an EXTRA wheelchair.)  I debated considerably.  I wanted to go.  But taking a wheelchair for me seemed too much. I can walk.  How does it look to see me walking and pushing a chair and then having to sit in it when I stop? Who cares how it looks?ID-100300822

When I said my fellow bloggers and I were at different levels of MS progression I didn’t just mean in terms of symptoms.  I also meant in terms of acceptance.

Ultimately I skipped the fireworks and told myself it was because of the early flight in the am and that it was ok because I had already had way more fun than I expected.  I went up to my room and proceeded to mentally berate myself all night to the point of absolutely no sleep at all.  Yes, I was beyond exhausted and the bed was super comfy.  But still, I tossed and turned and thought and cursed until the morning.

The good thing about not getting any sleep is that you are already awake when you need to be. I got ready and headed to the airport in plenty of time for my flight.  While in the restroom I heard rumors of a cancelled flight. I figured it must be another plane to Boston. But I was wrong.  My 10:05AM American Airlines flight had been cancelled-no reason given- “they just didn’t have a plane-too bad” and was rescheduled for 8:35 PM.

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Huge lines formed as passengers tried to figure out what to do.  A phone number was handed out for complaints and possible alternatives. When I called I was told to go to the next reservation desk for help.  The agent there spent 10 minutes telling me and other passengers why she was too busy to help us.  We were told to stay in line and maybe they could help in another hour or so.  There were no seats near her desk. My legs were hurting.  I needed to make more calls.

It was then that the germ-a-phobe in me collapsed unto the filthy terminal floor and used it as my personal office. I didn’t have the energy to spend ten hours hanging out in the airport and I had no faith that there actually would be a 8:35 flight. I had lost faith in American Airlines.  Actually, I had no faith in them before either but a free trip is a free trip no matter who you fly with.

I called my preferred airline Southwest and was thrilled to discover they had a flight at 4 PM and I had enough rewards points to cover it- yahoo!!! I booked it and set about to finding the Southwest terminal.

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I was struggling cognitively.  I saw a sign that said Millet with a picture of a bed.  What is a Millet bed?  Is that an area where the passengers can rest for a bit?  How could I find it?  I could sure use a Millet bed.  It was several signs later when I saw it again and this time the sign with the bed read Hilton.

The first security guard I asked about the Southwest terminal said “you can’t walk-that’s a whole different airport.”  He must have been a wise guy and so I ignored him and kept on trudging. I saw a sign for an airport shuttle service and asked them if I could take the shuttle to the Southwest terminal.  “No, they told me, that’s at Midway, a whole other airport.”

I still wasn’t getting it. I figured Midway must be another name for Southwest. I had enough of these bozos.  I went outside to the taxi stand and asked how much it would cost for a cab to take me to the Midway terminal. $60 I was told.  And while I stood with legs that felt on fire and breathing in the exhaust from the shuttles, he explained that Midway was actually another airport in Chicago.  Chicago had two airports and I was in the wrong one!

What could I do?

I did the only thing I could think of at that point.  I bummed an unhealthy stress cigarette from an airport employee on a break and told her of my sad plight.

Before I get rebuked please know that I don’t smoke.  Not really.  I used to smoke but I quit because smoking is very, very bad.  I only smoke when I’m stressed.  Or when I am drinking with friends who smoke.  But if there was ever a time for a stress smoke it was then.  And since the air outside of an airport is so bad anyway, it didn’t seem like one cigarette could do that much damage.

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The employee was very nice and we chatted before I got into a cab and she went back to work. And yes, $65 dollars later and more sightseeing of Chicago highways I was delivered to my second airport of the day, coincidentally, much closer to the hotel I had been staying at.

Finally at Southwest I felt better.  Until I had to wait in another line at yet another desk.  I was told to step aside as my wait could be ten minutes or so.  And again, there were no available chairs.

At this point, the tears started. I couldn’t help it.  I do not like to cry in public. It’s humiliating.   But the fatigue, pain and frustration were just too much. It was through my tears that I asked for a wheelchair.

It had happened.  I accepted that sometimes on this MS journey, I’m going to need help.  And I’m just going to have to get over that.

If I want to have fun, if I want to get around, if I want to have a productive life, sometimes I’m going to need a chair.

Or a cane.

Or cheater eyeglasses.  (Those may be more necessary due to old age but you get the drift.)ID-100283174As it turned out, it was going to take them a few minutes to get a chair to that terminal and so they helped me right away so I wouldn’t have to keep standing.  And then they found me an empty seat right in the boarding area specifically meant for people with disabilities.  I didn’t look the part.  I didn’t care.  It was where I needed to be to rest my overwhelmed body.   It was there I waited for my flight home.

So while this MS Summit was for Novartis to learn from the MS community, it helped me to learn too. I learned that life is better with help, no matter how that help presents itself.  Be it a friend with an extra wheelchair or a helpful airline that just rocks or a lone woman on a smoke break.

The next time I fly I will take Southwest and will make sure I have the right airport.  And I will also ask for a wheelchair if I need it.

Maybe, just for fun, I’ll ask for two….

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