Tuesday, October 14, 2008

News Flash: I Still Have MS!

Be forewarned: This is a bitchy post that doesn't come around to my usual Pollyanna perspective at the end.

I recently read a post by another MS blogger that reminded me why I began Maybe I'm Just Lazy and what I still need to write about.

I'm not beating up on myself. Politics and fun are both very important to me and the world. But MS AND MY LIFE is what I need to write about. It's what prompted me to dig down and find my writing voice again. McCain and Palin will continue to spread hate, dishonesty, and intolerance; Obama will be elected President; and I will still have MS.

On her blog, Empire No More, PunkRockFairy (I'm assuming that's not her real name) wrote an incredibly poignant and elegant piece about how MS has reeked havoc on her confidence. By the time I finished reading the post, tears were running down my face. As I told the author, I cried not because I felt sorry for her but because I knew exactly what she was talking about.

When people ask me how MS has affected my life, I usually try to describe how it's robbed me of my sense of invincibility. I used to think I could do anything. Now I'm not so sure. I used to be freakishly strong. I was the person who carried the heavy box alone and who could always open the really hard-to-open jars. I did not need help moving furniture around and I could install and remove an air conditioner all by myself. Not anymore.

While I've never been especially graceful, I didn't usually trip over my own feet. Sometimes I do now. Before MS, I usually managed to carry my iced coffee to the car and then into work without incident. That is no longer a given and I've dropped more iced coffees than I'd like to remember in the parking lot at work or next to my car at home.

Before MS, I'd like to think I had the ability to effectively communicate my ideas and thoughts and that I was pretty eloquent in expressing them. That is not always the case now. I sometimes have to search for the word that I am thinking. I know the word but I sometimes lose it temporarily or mix it up with another word and don't realize until the wrong word comes out of my mouth.

I used to have pretty good vision. I was 30 before I started wearing glasses and then only for driving at night. Today, I REALLY don't like driving at night and, if I have to, I have to either close my bad eye or wear a patch over it. I used to love shopping. I could spend HOURS in Building 19 or Ocean State Job Lot or other stores that had a plethora of bargains. Now, because of Uhthoff's Sign, I have trouble walking and seeing at the same time when there is a lot of visual stimulation. Unless I know the store by heart, I can't find a particular department even if the signage is pretty prominent.

I can no longer hold it. Yes, that's right. I'm talking about the thing no one with MS wants to talk about: the dreaded bladder dysfunction. When I feel like I have to pee, I better be close to a bathroom and it better be available. I have too much pride to describe this symptom in detail in this forum. Suffice it to say I laughed harder than the average person (and a little uncomfortably) when I saw David Sedaris' Stadium Pal reading on Youtube. While it sounds somewhat horrific, I'm not sure the Stadium Pal is any worse than the alternative. I'm a new fan of Mad Men and, when I had my own little On Demand marathon the other night, I didn't laugh when Freddie peed his pants while drinking at work. I know he was drunk and I know it's fictional (I haven't completely lost my grip on reality), but it was really, really sad to me. Come to think of it, I probably peed my pants in public when I was drinking, too. But I digress. Bladder dysfunction sucks under any circumstances and, when you are a 44-year old woman who would like to think she's still relatively youthful and, on a good day, kinda hot, it's very, very degrading. One minute, you're enjoying the appreciative glances from the 40-something hottie in a Saab in the next lane and the next minute, you are doing the pee-pee dance outside the single stall in the women's restroom at Dunkin Donuts, considering tackling the old man with the cane out of the way as he enters the men's room next door.

And then there's the whole spoons thing. I have a finite amount of energy and no matter how much I try to pretend it isn't true, I cannot stay up until all hours or do too much one day and not pay for it the next day and sometimes even the next two days.

Have I mentioned the hip and leg pain recently? Some days it hurts and it doesn't seem related to activity or inactivity. I go for a long walk, it hurts. I lay on the couch like a sloth and it hurts.

I see my new neurologist at the Partners Multiple Sclerosis Center next week and I will have to tell her that I rebelled against my last doctor and didn't get the 6-month series of MRIs. I sure showed him, huh?

Ok. I'm done whining now.


  1. Julie,

    You are not alone. Still got MS here too.

    Week before last I went to the dentist. The appointment went well and was extended a little to get some molds made so that I could get mouthguards (anti-grinding teeth stuff).

    I was feeing pretty good and planning to stop and shop a little on the way home. I got out to my car, sat down, wrote something done. Then was thinking, "hmmm, maybe I should go back in to the bathroom." Oops..."maybe I better drive the car over to the door and get in more quickly."

    Whoops.... cripes... too late... pull the brake, get out of the car so as not to wet the seat more. Stand next to the car, pee down my jeans and try to avoid soaking my birkenstocks.

    Well, I didn't go shopping on the way home. But I did jump in the shower after I got home. That pretty much sucked, big time.

    You are not alone Julie.

  2. You might not be physically invincible, but you're still an iron-woman mentally! Thank you for putting into words what goes thru my mind - I've found a new source of power based on you, the strong women who share their stories online so that us newbies to MS can learn and follow in your footsteps!!!

  3. Hi Julie:

    Still have MS here too. You'd think by now, after 32 years, it would get sick of hanging around me and hit the road! LOL

    Bathroom stuff --- I know where every bathroom is in every store I visit. On the days I am not cath'd (usually only about 4 days a month) and if I have to go out to the store, I almost always hit the bathrooms at least three times during a one hour store visit.

    So it is imperative that I know where they are for my sense of pride in not wanting to be caught wet. LOL

    No matter how big they make POISE pads, it will never be big enough. I swear us MSer's have the biggest bladders God ever made!

  4. How's this for *anti-Pollyannic*:

    When I have my really good periods of fairly MS-free days/weeks, I get to the point I begin to FORGET the disease even exists in me. Life returns to a semblance of baseline "normal" (whatever that is). And then...the MS returns. And I am left PISSED OFF and feeling so deceived by the *good days/weeks* that I sometimes wish I didn't even have them! Frickin' posers (those good days)...and I really despise people who tell me (when I'm in a bad period) to ENJOY the good days. I'm generally fairly upbeat, too...but I have my auntie Pollyanna (or anti-Pollyanna) moments also. I just call them reality.

    OK, was that audible and completely inappropriate?!? LOL

    Linda D. in Seattle

  5. Hallo, my name is Fumblefingers McStumbly! Since MS I need one of those rubber covered cell phones. I've thrown my back out from having to bend over to pick up everything I touch. I've also started cataloging all the stores in town that have a potty at the front AND back of the store. I haven't peed myself yet, but it's only a matter of time. :)

    I alternate between fury and giggles at these new developments. Hopefully, I can have sense of humor about it more often than I have a fit.

  6. Lisa,
    What award????? I love recognition and/or gifts!!! I clicked on the link and got nowhere. :-) I'm so silly I know.
    Lazy Julie

  7. Ugh... that's odd. Here's the post with the award -
    I'll let you cut and paste so that I don't mess it up again. :)