Adventures in the Sand Box

[Quixotic1]

Two years ago, right after I was diagnosed I went to the MS Continence Clinic because of worsening urge incontinence.  The wonderful, patient and compassionate uro-gynecologist asked me a hundred questions and examined me and told me that she could offer me meds for the problem or have me go through Behavioral and Physical Therapy, which helps a lot of women, even those with neurologic problems.

Hmmm, I sat there and quickly imagined little Kegel barbells, working up a sweat with the ThighMaster, and aerobically cracking nutshells between my knees - all the time with a therapist peering up my skirt and cheering me on enthusiastically.  This all seemed a bit sordid, so I passed on the otherwise enticing opportunity.

In the meantime I soldiered on enjoying the vast variety of my MS's manifestations, but clearly aware that the problem with my Urge's had passed from leaks here and there to times that would parallel the thrill of Niagara Falls.  Tena and I started to become close acquaintances.  I knew I would have to face the doctor and admit that I needed her drill sargeant and pep squad.  I saw her again last month.  This time she offered me a trip on the Urodynamics Thrill Ride and told me that my sphincter was spazzing at the same time my bladder was.  I had Detrusor-Sphincter Dyssynergia.  "What did I want her to do this time", she asked.

It was honestly hard to say that I thought I needed a spot on the Reality TV show - 'How Long Can You Hold It?"   which has been a poplular offshoot of the old Candid Camera.  She agreed.

So week before last I showed up for the show.  I was alone in the waiting room.  Good.  I was the only participant.  At least no one was going to make me look bad.  Ann, the PT was nice.  Too nice - it made me suspicious.  What was she hiding?  Just how awful was this going to be?  I was getting cold feet.  It's hard to slither out of the room when there are three other people in the office and they are all looking at you.  Yuck, I was going to have to go through with it.  Ann reassured me.  Today was only a long talking visit and a check of my back.  That seemed doable.  Hah!  She only said that to get me to let my defenses down.  We talked and I answered all of her questions.  When did I leak?  Where?  How Often?  Doing what? (Uh....while rushing to the bathroom???  Ya think?)

I was all comfortable.  This was going to be easy.  Then Ann dropped the bomb.  Well, she said, "Your bladder is running your life.  You have got to regain control over your potty training.  Yes, we did want you to run to the bathroom when you first felt the urge - but, honey, that was when you were 3 years old.  You're are older now and you need to learn to have more mastery over this basic function."

I sat there impassively, but that voice inside me - the little voice that always speaks the truth was screaming, "NO!!  NO!!!  You don't understand!!  I have MS!!  Something is wrong with me!  My nerves are broken!  This isn't a "behavioral" problem!  My bladder is NOT leading me around by the nose!  I wouldn't let that happen!  I am smart and educated!  I am special!  I AM MASTER OF MY OWN DOMAIN!!!"

"Okay" I told Ann

Ann nodded seriously.  "This is what you need to do.  Everytime you feel the strong urge that sends you lurching, lunching and leaking toward the bathroom, you must DENY it.  You will stand still and do whatever it takes to let the urge pass.

My little voice - sarcastically, "Yeah, like that is gonna happen"

"Okay," I tell Ann.

She continues, "Do whatever you need to - hold yourself, cross your legs, even leak.  But you must wait until the urge quiets down, which it will do.  When the urge is quiet and you can walk normally, you may walk to the bathroom.  If the strong urge returns, you must stop and wait again until it quiets.  Then you can move at a regular pace to the bathroom."

My little voice is not convinced, "And you will come mop up the floor, I presume?"

"Okay," I say.

Ann speaks more animately, as if emboldened.  "After some time of this - not long for some, longer for others, the bladder learns that it is not going to have its way and it will only get relief when it is not hounding you to rush."

My poor little voice has started wandering off, its spirit broken, "When do we get graham crackers and milk?  Can we have a nap then?"

"I see,"  I hear myself answering.

Ann says that I will have to do this until the next time she sees me.  

"oh, joy..." (did I say that aloud??)

"And then," she continues, "I'll do an exam, and we will begin the exercises."  

I am whipped.  Bring on the Kegel barbells, the ThighMaster, and the peering cheerleader.  Ah, h ell!  Bring on Suzanne Somers, too.  She probably doesn't leak.

Then I got the flu.  Fluids and too much time in bed.  STrong urges, scenes of Niagara Falls.  Was it all a bad dream?  Well, unfortunately as the delirium lifted, I realized that I had, indeed, made a pact with the devil.  So, I began the surrealistic exercise of ignoring the location of the bathroom when my bladder began tantrumming.  I would show her! My problems weren't in my head.  Her stupid plan wouldn't work!

The first time I did the bladder-defying routine it was pretty dicey.  I'm glad I was alone.  But, after a minute or so, the spasmy, urge to run subsided and I could walk upright to the proper room.  So I did it again and again.  After a couple days I realized that the urges weren't happening every hour on the hour.  Eventually I could silence them with a simple "Hush!" using the little, inner voice (who even seems pleased at her new-found power)  Please do not press her for authentication of all this.  She would never admit it.

I will say that about 1 in 10 times none of the practice works.  I lose it all no matter what.  I can't say yet what the difference is between the urges that respond and the Urges that cry out, "H ELL NO! WE WILL GO!!"  But, all in all I have a much less uncertain and chaotic life now.  It seems that we can get all messed up with regard to responding to our bodily needs.  Having a body that does just what it wants to so much of the time and so little of what I want it to, I just believed that all of my urge problems were neurologic.  It is a little embarrassing to admit all of this, but a little empowering, too.  I'm still not looking forward to having Suzanne Somers cheer me on cracking nutshells using the ThighMaster, but I will give it a go.

Quix

[Wobbly]

this is so funny... I thought you were joking around at first...then I picked up that it's for real... well, even I will try this...and I'm not Dx...but seem to run alot of times to the bathroom...or don't make it there..

thanks for this... and I'll let you know how it goes...

can't wait for Part Two....

take care
wobbly
undx

[Fluffysmom]

"An excellent read!"

"Be sure to read "Adventures in the Sand Box"; an inspiring Tena to triumph story of personal strength.  I laughed, I cried, I peed myself!"

Thank you, you're awesome.

Kathy

[Karen99]

Thanks for writing about your "adventure." It made me laugh out loud.  The title was intriguing too.  Perhaps you should write a book of memoirs of an MS'er.  

[rendean]

Quite insightful and as usual, very well written. Truly love the sarcastic little voice! You named your testing the Urodynamic Thrill Ride. I named mine (Insert hospital name)"s Little Shop of Horrors since the 'ride' seat was very reminscent of a dental chair and Little Shop of Horrors immediately popped into my mind...minus the drill.

Anyway, I plan to try the techinque you described so perhaps I can avoid the long talk about how we let our bladders control us..yadda, yadda yadda.  After survivng 6 of the 12 scheduled doc visits on my current calendar, I can perhaps skip the bladder babble and retrain my myself.

Thanks for sharing!
Rendean

[Nancy T]

Quix--How amazing that you can take an awful problem like this and make it so darn funny--you are a great writer!

Between the laughter and the horror while reading this, I had visions of puppy training, the piano scene from "Sybil," and my own continual nightmares of being unable to find a bathroom and letting it go on couch cushions.

Congrats on getting some control over your problem!

Gotta go (really),

Nancy

[Lulu54]

Just when I was ready to power down for the night, you posted this insightful -now I wasn't peeking - tale of mastery and domination.  Does it require leather and whips ?  LOL - sorry kids, if you're reading this you better be able to take a joke.

Thanks for sharing in detail - perhaps I will drag out my willpower and try it as well again. I have tried the stop and focus technique, quite unsuccessfully.

Please add a link to this page to that new HP I started of favorite posts so we can find it again and again.

Gotta go,
Lu