Literally! When the plumbing stops up, life is not so jolly...So you should opt-out now if graphic defecation or the unvarnished realities of ALS offends....Cause it's about to get real.
As you may know, I'm in the end stage of ALS. I'm paralyzed, cannot speak intelligibly, unable to eat most food, my drinks are honey-thick, and most of my nourishment goes through my g-tube. I suffer decreasing breathing abilities, fasciculations, charlie horses, muscle spasms of varying degrees, and I'm living in a hospice care facility. Additionally, I'm plagued with saliva and mucus issues.
It was the latter that got me headed down a bad, bad road. After days of dealing with gluey mucus cascading down my throat, gagging me, and encasing my teeth in an invisible prison, I took drastic pharmaceutical action. Benadryl stopped knocking it back, then I survived the God-awful taste of atropine, and moved to the more palatable glycopyrrolate (gly-koe-pi-roe-late).
Even with the latter, I was still enduring nighttime bouts with the cough-assist and suctioning to not drown in mucus and saliva. To keep ahead of the onslaught, I stepped my game up and took additional doses, fully sanctioned by my on-site doctor. Looking back, I wasn't keeping up my fluid intake. And whilst I was trying to do just that, I was doing a lot of daytime sleeping, preferring to blog, binge-watch Netflix, and party with night shift...Uninterrupted. Add in a sleepover daughter visit over Mother's day weekend, where I thought it prudent to put the kibosh on the bowel meds...Viola!!! I backed that ass up.
Resuming bowel meds, using suppositories, and enemas failed to get the mail moving, again. I thought childbirth was the worst pain possible; I never dreamed birthing a brown-ass food baby would beat the pain scale. In the meantime, I'm still blowing through adult diapers, focused on the new problem of blood and a healthy, new crop of grapes. I thought my growing belly and unproductive urges were constipation. When I finally realized that my pain was two-fold, alternating between bowel and bladder spasming, I asked a nurse to check my bladder. The solution was to catheterize, or shove a tube into the urethra down to the bladder to drain.
I wish I could say it did the trick but four nurses, multiple attempts and twenty-four hours later, one nurse was finally successful. After draining 1,050 cc's of urine, the color of stout, I was able to extend my legs without excruciating pain. The average person will likely not be able to connect those dots. Don't feel bad, my caregivers didn't either.
I've been limited to bed or chair three years since I've been paralyzed; I do not lay flat to sleep. I'm not very flexible, anymore. My muscles, ligaments, and tendons have shortened. Couple that with a full bladder and bowel, and you get somebody who cannot straighten out comfortably. I thought I would bust apart; I was in agony. At least by draining my bladder, we knocked back half the spasming and I could survive having my legs unbent
But I had yet to resolve my constipation problem. My urgently needed "go power" was delayed 24 hours at the pharmacy. Incredible! When did I sign up for reality Twilight Zone?!
Sweet relief took much mindfulness meditating and "embracing the suck", as a fellow person with ALS so eloquently puts it.
As you may know, I'm in the end stage of ALS. I'm paralyzed, cannot speak intelligibly, unable to eat most food, my drinks are honey-thick, and most of my nourishment goes through my g-tube. I suffer decreasing breathing abilities, fasciculations, charlie horses, muscle spasms of varying degrees, and I'm living in a hospice care facility. Additionally, I'm plagued with saliva and mucus issues.
It was the latter that got me headed down a bad, bad road. After days of dealing with gluey mucus cascading down my throat, gagging me, and encasing my teeth in an invisible prison, I took drastic pharmaceutical action. Benadryl stopped knocking it back, then I survived the God-awful taste of atropine, and moved to the more palatable glycopyrrolate (gly-koe-pi-roe-late).
Even with the latter, I was still enduring nighttime bouts with the cough-assist and suctioning to not drown in mucus and saliva. To keep ahead of the onslaught, I stepped my game up and took additional doses, fully sanctioned by my on-site doctor. Looking back, I wasn't keeping up my fluid intake. And whilst I was trying to do just that, I was doing a lot of daytime sleeping, preferring to blog, binge-watch Netflix, and party with night shift...Uninterrupted. Add in a sleepover daughter visit over Mother's day weekend, where I thought it prudent to put the kibosh on the bowel meds...Viola!!! I backed that ass up.
Resuming bowel meds, using suppositories, and enemas failed to get the mail moving, again. I thought childbirth was the worst pain possible; I never dreamed birthing a brown-ass food baby would beat the pain scale. In the meantime, I'm still blowing through adult diapers, focused on the new problem of blood and a healthy, new crop of grapes. I thought my growing belly and unproductive urges were constipation. When I finally realized that my pain was two-fold, alternating between bowel and bladder spasming, I asked a nurse to check my bladder. The solution was to catheterize, or shove a tube into the urethra down to the bladder to drain.
I wish I could say it did the trick but four nurses, multiple attempts and twenty-four hours later, one nurse was finally successful. After draining 1,050 cc's of urine, the color of stout, I was able to extend my legs without excruciating pain. The average person will likely not be able to connect those dots. Don't feel bad, my caregivers didn't either.
I've been limited to bed or chair three years since I've been paralyzed; I do not lay flat to sleep. I'm not very flexible, anymore. My muscles, ligaments, and tendons have shortened. Couple that with a full bladder and bowel, and you get somebody who cannot straighten out comfortably. I thought I would bust apart; I was in agony. At least by draining my bladder, we knocked back half the spasming and I could survive having my legs unbent
But I had yet to resolve my constipation problem. My urgently needed "go power" was delayed 24 hours at the pharmacy. Incredible! When did I sign up for reality Twilight Zone?!
Sweet relief took much mindfulness meditating and "embracing the suck", as a fellow person with ALS so eloquently puts it.
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