Tuesday, January 28, 2014

Life Is a Little Better This Week

Toilet Spy. Urinal in Berlin
(Photo credit: Wikipedia)
On the whole, things get more difficult over time with progressive MS. But once in a while we stumble upon a new device, or a new procedure, which at least temporarily makes things better. That’s what happened this week.
Here’s some background. For many years, I have had to pee once or (occasionally) twice in the middle of the night. That was no big deal, until my legs stopped working. At first I would use whatever mobility devices I needed in order to help me get from the bed to the toilet.
A few years ago, instead of dragging my sorry ass all the way to the bathroom, I began to sit up on the side of the bed and empty my bladder into a hard plastic, portable urinal. I would then swing my feet back up into the bed, and fall asleep. In the morning, I would empty the urinal into the toilet. That was so much easier, and it made my life better. But it didn’t last.
Eventually I began to lose the ability to swing my feet back up into bed without some assistance. This meant that every time I emptied my bladder in the middle of the night, I had to wake up Kim so that she could lift my feet back up into the bed. This was our standard procedure from about 12 months ago until about 6 months ago. Then, it also became difficult for me to execute the first portion of this maneuver, getting my feet off the bed and sitting up without assistance. I would have to wake Kim to help me both before and after I emptied my bladder. Between her two tasks, she would sometimes use the bathroom herself. Other times she would crawl back into bed for a short time. Once in a while she would just stand there and stare at me, silently inferring, “Hurry up. It’s the middle of the night, you know.”
I worried about how I would manage if Kim wasn’t next to me some night. But more importantly, and more urgently, I worried about her ability to get a good night’s sleep. Once she expended the physical effort associated with helping me, Kim’s sleep pattern was significantly interrupted. She felt tired the next day. I felt guilty.
I knew that some men were able to use a urinal while lying in bed. I just couldn’t figure it out. The biggest challenge was that water, or pee for that matter, runs only downhill, never uphill. So I obviously couldn’t empty my bladder into a urinal if I was lying flat on my back. If I rolled on my side I sunk down quite far in the mattress, so far in fact that if I stuck a hard plastic urinal against myself I was asking water to run uphill. I very much wanted to find a way to make it work, but I couldn’t, until last week.
Once a year or so I bring in my favorite occupational therapist, Maren, to help me figure out new and creative ways to accomplish everyday tasks after a year’s worth of disease progression. Last week was one of those times. We talked about a lot of things, and eventually the subject of nighttime urination came up. We tossed around a bunch of ideas, and that night I gave it a try, very much afraid that if I screwed up it could be messy.
By using a particular kind of soft, flexible urinal, and positioning my body only partially lying on my side, and elevating my upper body a certain amount using the hospital bed features that I have, it worked! Now, for the last week or so, I’m able to empty my bladder without getting out of bed or even sitting up on the side of the bed. That makes it easier for me to get back to sleep. More importantly, Kim is able to snooze right through my nocturnal activities, like she used to years ago.
I’m sorry for subjecting you to a discussion of bodily fluids. But this minor procedural change represents a meaningful improvement in our lives, leaving us happier, more well-rested, and more likely to be awesome each and every day.
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  1. Alright Mitch,
    Please ask your friendly favorite occupational therapist:
    'how to make that work for the nocturnal activities of the female persuasion?'
    Have same issues here.
    Any advice would be greatly appreciated.
    Thanks for exploring these subjects with us so we can all learn from each other.
    I so get where your coming from so please keep up the good work.
    You touch so many of our lives with your helpful hints.
    Makes us feel as if we're not in this boat alone.
    Truly - THANKS!


  2. I am glad that you were able to work out a solution that works with the help of your OT. Calls for a Hip Hip Hooray!! I'm sure that Kim thinks so too.

    I am fortunate that, after several years dealing with issues of incontinence type that getting a supra-pubic catheter has solved most of them. I don't get the infections that I used to, and were caused by not drinking enough water. AND, I can sleep through the night with no worries.

    Now all I have to have done is get the bed raised so I can get out of it by myself. All in due time (she said to herself, foot tapping.)

  3. Dee, it certainly is more complicated for women. I suggest you get a referral to an occupational therapist yourself. They can help with so many activities of daily living.

    Webster, I'm glad to hear that your supra-pubic catheter is working well. I see one of those in my future when my bladder stops working. you have had no issues with infections or leaks?

  4. Very glad to hear you've got such a positive life changing adaptation for both of you. Therapists can be powerfully useful or, well, not so much and sadly sometimes deleterious. I've had the run of the spectrum as I'm sure you have too. Celebrate the epic win!


  5. Funny you should mention those, Mitch. when I first heard of the SP catheter, many years ago, the fear of infections was great. I have found that I get infections when I don't drink enough water - simple as that. But enough water for me is about two litres (or ~32 oz), so it's not like I have to drown myself.

    Now leaks - I had more in the first year, and they were never satisfactorily explained to me why. I had one two months ago and called on my uro and his response was that leaks were often positional. So I twisted and turned the cath for a few days and they stopped. I usually sleep on a crib liner so if I spring a leak at night, the whole bed doesn't have to be changed.

    I also (FYI) use a BellyBag, so I don't have to deal with the tube going my leg to a leg bag.

  6. i started - and then stopped - looking into "condom-catheters." i currently do the sit up and pee in a bottle routine, but, since my wife and i sleep in separate rooms, having her assist me - when i get to that point - is not an option. i have not tried the condom-cath, but it looks like a decent solution, for travel as well.

  7. Darren, I have had very good luck with therapists. Can't remember a bad experience.

    Webster, thanks for the information. It's reassuring.

    Stephen, condom catheters – another option that we men have that the women do not! I gave them a try and didn't really care for them. Consider the flexible rubber urinal that I mentioned: http://www.amazon.com/gp/product/B0010K4Q7W/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1