2 posts tagged “life hacking”

Breaking the silence on incontinence

Posted 10 months ago by

A guest blog by member Shannon

 

MS gives me a lot to write about, which is a wonderful coping mechanism when certain aspects of the disease are difficult to talk about. Initially, I wrote about stress and the heavy toll it’s played in my life, and on my body, in the last month. But, as often happens with this disease, I was interrupted. My body said unexpectedly, “No, this is the way we’re gonna do things.”

And just as suddenly, my writing inspiration is changed, because although my temporary season of severe stress was very real and terrible, there is a part of this disease I must expose for the sake of anyone who may suffer in the way I do. Possibly, I’ve waited years too many to share. I’ve written multiple accounts to describe my suffering which have never been read; kept private to spare myself additional pain and embarrassment. I tucked them away, in the same way I attempt to shamefully tuck away this symptom and pretend it isn’t there. Until the next time.

I received an email recently from PatientsLikeMe which prompted me to share the details of likely, the most humiliating part of MS. Incontinence. The word itself is uncomfortable. Many can’t even say it right, and most people aren’t totally sure what it means. Having worked in retirement homes, it’s a familiar word to me, yet even I was unsure of its depth, assuming it meant, “a little bit of urine leakage, typically in the elderly when the bladder simply gets old and tired.” And then there’s my own personal definition.

A few months back when my kids got out of school for the summer, I decided to take advantage of the peaceful morning (not filled with making lunches and carpooling for the first time in nine months) and take my beautiful big-white-fluffy-dog, who we like to call our own personal pet bear, to a local preserve to practice using a mobility harness we bought her. If you know anything about me, you’d know this was overly optimistic and risky from the start as my walking range is quite small and as a rule, I don’t walk our dog ever. I reasoned that I would walk a very short distance to save my strength for the walk back. I hoped that the a harness and mobility handle would assist me enough to make this a successful morning stroll.

On my drive to the preserve, I realized that if I didn’t find a bathroom and attempt to empty my bladder, I might have a predicament at the preserve, since I didn’t know if there were any restrooms there. My preparation seemed flawless, this was going to be a great morning. But, when I arrived at the preserve there were no restrooms in sight.

Although a very flat and easy trail, my legs didn’t take me very far. As soon as I noticed my gait changing, I turned back. A rather predictably-unpredictable symptom of my MS related bladder problems is bladder urgency. The word is self-describing. Urinating suddenly becomes urgent. I may not have a full bladder, yet without warning, it must be emptied. Sometimes this results in a little bit of leakage. Thankfully, I’ve always been able to locate a restroom before my bladder decides to empty prematurely. Until this day.

How did I not know?

Nobody told me that somehow the weakness in my legs, which grew with each step, would also somehow impact my ability to hold my bladder. Duh, “lower extremity weakness” might include those parts below the belt too, not just my legs. Here I was, growing fatigued to the point of limping, trying to speed walk and creating constant tripping hazards – my own feet. For the first time, I felt complete bladder incontinence. The external sphincter outside my bladder, which I had depended on for nearly 40 years, and assumed I had ultimate control over, decided that today was the day it was the boss of me. Alone, no restroom in sight, and, before I could even consider my plight, urine fell out of me like it wasn’t even mine. Like it was being poured from another source. Zero control. I couldn’t stop it, I couldn’t hide it, and I couldn’t even continue walking forward. I instinctively used all the tricks I’ve used in the past to control the situation, but I failed. The more I tried to hold it, the more I realized I must surrender to what is happening. My dog, unaffected by what was happening, stood beautifully still. Unbeknownst to her, she became my shield. From what? I don’t know. Myself maybe. This truth maybe.

When I felt the sensation pass, I pressed forward to get to my car as soon as I could. Tears rolled down my cheeks as I processed what was happening: “I just peed all over myself from the waste down – pants, socks, shoes, and now I can’t even walk quickly to get back to my car, I’m hobbling at a snail’s pace. God, don’t let anyone see me. God, help me get to my car.”

It was a miracle no one was on the trail that day. It was a miracle I wore black leggings instead of shorts. It was a miracle my dog sensed that I needed this makeshift harness more than ever. It’s a miracle that I drag myself out of the basement of my humiliation every day and continue to keep on going, keep on trying.

Clearly, I survived, and this day is behind me, but the issue of incontinence isn’t. I live every day this way, on the border of “Can I make it? Should I leave the house now or wait ten minutes?” And always, my MS superpowers are paying attention to where each and every bathroom is. Leakage, well they make something for that. Complete emptying in public, I’ve never had to consider what those options might be. And for the curious, yes, I’ve had some very close calls with bowel movements as well.

There are many solutions offered to those of us who live this way. I’ve found some work better than others. I thought since the experts form helpful lists, I myself as a self-titled expert, would do the same.

These are some tricks that work for me:

  1. Unfortunately, restricting fluid intake is necessary at times since obviously any fluid intake causes additional urination. Which is the exact opposite of what we want to do if we are fighting constipation, but sometimes we have to do what we have to do.
  2. A nurse once told me, “Sip, sip, sip equals pee, pee, pee. “ So I almost never sip water, rather, to hydrate, I chug a whole glass at once, and then typically, empty my bladder all at once.
  3. Wear black and dark colors, it hides leakage well.
  4. Know where public restrooms are everywhere you are spending your time. I cannot emphasize this enough. And know which bathrooms are the most public friendly with the least amount of walking.
  5. If going somewhere early, reduce caffeine intake as it is a diuretic. For me, this means if I have to leave the house first thing in the morning, I limit myself to half a cup of coffee.
  6. Various movements help buy me minutes or seconds to get to the restroom or while waiting for it to become available. Pushing on my bladder slightly and doing a subtle potty dance of bending, lifting one leg up on a bench etc. helps distract my brain from the urgency.
  7. Since I also suffer from bladder hesitation, going before I leave the house isn’t always an option. Sometimes I just can’t go. I always consider how long it will be until I can get to the next bathroom. And when my bladder is playing it’s hesitancy game, it is very shy, needs complete privacy, and gets even more agitated and hesitant with heat, so I make sure to keep those things in mind too and plan accordingly.
  8. Limit drinking any fluids in the car. Just don’t do it. Hydrate plenty before or wait until after.
  9. Don’t assume because you’ve had multiple children this is the cause of leakage. Although I have three children, my leakage is very different than simply a tired, stretched out, child bearing bladder. I never leak when I cough, sneeze, laugh or squat. Neither can I push on my bladder to initiate flow or complete emptying (incomplete emptying is another bladder symptom I’ve dealt with in the past).
  10. Tell a few, understanding people close to you, so that when you say, “I gotta pee”, they stop what they’re doing and practically form a military procession to remove any obstacles and get you to the nearest toilet, or at least, they just get out of the way.

This symptom can be very isolating. I don’t know another human being who can share in this experience with me. And that’s my hope in sharing with all of you. Even if it feels that way, we aren’t alone, and we need to offer our experiences and our tips to a community struggling to feel less alone in our disease.

Can you relate? PatientsLikeMe members are sharing how they cope with incontinence in the MS forum. Check out what they’re saying and chime in with your own tips.

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Know Thyself. Quantify Thyself.

Posted August 13th, 2012 by

Are you someone who likes to track things about yourself?  For example, do you keep an exercise log of how many reps you did – or a food journal that details what (and how much) you consumed?  Do you monitor your health and disease progression at PatientsLikeMe?

Quantified Self

If so, you might not know it, but you are part of the growing Quantified Self (QS) movement.  Also known as “Body Data” and “Life Hacking,” the QS movement was started by Wired magazine editors Gary Wolf and Kevin Kelly in 2007.  The idea is to increase self knowledge through self tracking.  More specifically, QSers use technology to record data on various aspects of human life, from “inputs” (food, air) to “states” (moods, blood oxygen levels ) to “performance” (mental, physical).

The hub of the movement is http://quantifiedself.com/, an online community where QSers can share their methods and learn from what others are doing.  In addition, QSers get together face-to-face for regular Show&Tell meetings in various cities around the world as well as an annual conference, which takes place this September in Palo Alto, California.  According to the website, the conference is a “working meeting” for users and tool makers looking to collaborate on self-tracking projects and explore the potential effects of self-tracking on society.

Larry Smarr, Founding Director of the California Institute for Telecommunications and Information Technology (Calit2) and Professor of Computer Science and Engineering (CSE) at the University of California at San Diego.  Photo Credit: Grant Delin, The Atlantic.

For many QSers, such as astrophysicist-turned-computer scientist Larry Smarr, self-tracking conveys huge benefits.  According to this fascinating profile in The Atlantic entitled “The Measured Man,” Smarr sees it as a tool for battling obesity, defeating incurable diseases (in his case, Crohn’s disease) and revolutionizing healthcare.  He’s got a good reason, too:  this is a man who monitored his own blood work and detected an inflammatory state in his body long before his first Crohn’s symptom appeared.   While some people feel that with enough data every person could find something wrong with their health, Smarr argues that it’s far better to detect that something’s “beginning to go wrong” and seek “preventative maintenance,” just like you would with an automobile.

It’s a striking analogy.  Could we as human beings extend our lives – just as we extend the lives of our cars – through data tracking and “tune-ups”?  It’s one of the big questions at the heart of the QS movement.  But as far as we’re concerned here at PatientsLikeMe, self knowledge – as well as shared knowledge – is always a good thing.  That’s why we’ve developed tools to help you measure your disease progression (e.g. our Multiple Sclerosis Rating Scale), track how your treatments impact your quality of life, monitor over 200 lab results (e.g. Vitamin D, cholesterol, PSA levels) and record how you are feeling day-to-day (our InstantMe survey).  Better yet, we help you share that data with other patients like you, so that everyone benefits and learns.

What do you think?  Has “quantifying yourself” led to any breakthroughs for you?