796 posts in the category “Conditions”

Breaking the silence on incontinence

Posted November 21st, 2017 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.

Share this post on Twitter and help spread the word.


Circadian rhythms and health: What’s the connection?

Posted November 20th, 2017 by

More than 3,600 PatientsLikeme members are living with insomnia, and 100+ report a circadian rhythm disorder. In October, three researchers won the Nobel Prize for their work examining the relationship between sleep, circadian rhythms and health. So with Daylight Saving Time just behind us, we’re bringing you more info about the “body clock” and how it can affect health.

Let’s back up — what ARE circadian rhythms?

  • Circadian rhythms are physical, mental, or behavioral changes that follow a daily cycle. They’re regulated by biological clocks, which exist in most tissues and organs in the cells.
  • A master clock coordinates all of the biological clocks and contributes to our sleep patterns (it also affects eating habits, body temperature, and other functions).
  • These internal “body clocks” are affected by environmental cues, like sunlight and temperature.

New research making headlines

The 2017 Nobel Prize in Medicine was awarded to three Americans for their work on circadian rhythms. The Nobel committee said their research was pivotal, because “the misalignment between a person’s lifestyle and the rhythm dictated by an inner timekeeper — jet lag after a trans-Atlantic flight, for example — could affect well-being and over time could contribute to the risks for various diseases.”

What’s the relationship between sleep and circadian rhythms?

  • Circadian rhythms help determine our sleep patterns. The body’s master clock, or SCN, controls the production of melatonin, a hormone that makes you sleepy. It receives information about incoming light from the optic nerves. So when there is less light—like at night—the SCN tells the brain to make more melatonin so you get drowsy.
  • For most adults, the biggest dip in energy happens in the middle of the night (between 2:00am and 4:00am) and just after lunchtime (ever crave a post-lunch nap around 1:00pm to 3:00pm?).
  • When things disrupt your sleep habits, like jet lag, daylight savings time, or a late night, they also disrupt your circadian rhythms, which can leave you feeling more irritable and make it harder to concentrate.
  • People who work rotating or shift schedules (nurses, law enforcement, etc.) are most at risk for disrupted circadian rhythms. Having an irregular schedule can wreak havoc on circadian rhythms.
  • All caught up on sleep? You won’t feel the dips and rises of your circadian rhythms as strongly. When you’re sleep-deprived, you may notice bigger swings of sleepiness and alertness.

How can it impact health and chronic illness?

  • Circadian rhythms influence short term memory, creativity and learning performance, weight gain/loss and your immune system.
  • Lack of sleep affects levels of metabolic hormones that regulate satiety and hunger. When you’re sleep deprived, your body decreases production of leptin, the hormone that tells your brain you’re satisfied, and increases ghrelin, a hormone that triggers hunger.
  • Disrupted circadian rhythms and lack of sleep are associated with diabetes, depression, bipolar disorder and seasonal affective disorder — and can negatively affect many chronic illnesses, including Parkinson disease, Alzheimer’s, MS, gastrointestinal tract disorders and kidney disease.

Think your circadian rhythms might be out of whack?

  • Try minimizing your screen time with electronics that mimic daylight (laptops, TV’s, cell phones, portable game consoles, etc.). And if possible, try to maintain a regular schedule when it comes to sleep, wake and meal times.
  • If you’re having trouble sleeping, feeling tired often or noticing any other symptoms, talk to your doctor.

How are you sleeping? Join PatientsLikeMe to connect with and learn from nearly 3,600 members with insomnia and share how your condition affects your sleep and circadian rhythm in the forum.

Share this post on Twitter and help spread the word.