My upper thighs braced my body against the bed as I peed. I was groggy from the medication taken just a few hours before. Stumbling would worsen everything; I don’t want to deal with that again. A little plastic purple cup on my nightstand refused to come into focus. I asked myself, “Do I really want to live this way?” As The Shiver spiked through my body, the answer, “not really,” ran through my brain without escaping as sound. No one else was anywhere in my house, so the answer was unnecessary. Responding would only make the situation weird. Weirder? More weird? Everything was weird enough.
Somewhere between one and three in the morning is
expected for this routine. The urge to pee is the catalyst, but it’s not what
you think. As a 50-something-year-old man (I’m not yet in my mid-50s, so I
won’t use the term), the feared “prostate” rigmarole is not the point of my
story. The bladder is an organ of interwoven muscles. Spasticity, tightness,
weakness, and failure of muscles are common symptoms of multiple sclerosis.
This combination introduces a myriad of bladder issues: frequency, urgency,
incontinence, nocturia (waking up at night to urinate),
hesitancy, double avoiding, AND (my favorite) multiple bladder diverticula. The
condition describes the pouches, or sacs, that form in the bladder wall,
similar to a hernia. One of these defective fibers can aggravate a person. Two
or more can require medication, surgical treatment, or catheterization. I have
six (at least).
I’m drifting off-topic. My question was about the
medication at the bottom of that purple cup. One baclofen and two
diphenhydramine tablets make up my cocktail to take as needed to get back to sleep. As becomes When just
about every night. If not, my day would always begin sometime between one and
three in the morning. My cocktail at bedtime does not last. You would think
that trazodone, baclofen, and two diphenhydramine would be enough to simmer
searing nerve endings and give me a chance for quality sleep.
Several times in my life, I have faced the
question, “Do I really want to live this way?” while staring at the pile of
pills amassed to get me through the day. Without fail, the answer is “No.” This
time was different. When the little plastic cup came into focus through my
sleepy eyes, I attempted to rationalize my need for medication.
“I need these pills if I want a full night of
sleep.”
“I didn’t get back to sleep the night before,
even with that stuff. Is it enough? Do I need more?”
“I need to get to sleep.”
“I need those drugs”—probably the four
scariest words to ever run through my brain.
Drugs stir a very rational fear in me. Far too
many personal experiences reinforce the horrors of drug addiction and abuse.
Ongoing efforts to avoid becoming a statistic will never be victorious. At no
point in my life will I feel secure to rise and say, “I have conquered every
demon that threatens me with drug dependency and abuse!”
It will never stop… nor can I.
“I need” ran through my brain in 2017 as I stared
down my AM/PM pill cases alongside my little baggie for midday dosing. That was
my first encounter with The Shiver. I conducted my inventory:
2x100 mg amantadine tablets (to treat fatigue)
2x10 mg Ambien tablets (to help sleep)
6x10 mg baclofen tablets (to reduce spasticity
throughout the day)
10 mg dalfampridine tablet (Ampyra, to aid
walking)
8x25 mg diphenhydramine tablets (to reduce
spasticity throughout the day)
The VA Healthcare System is an outstanding
organization that has provided quality care for me since I retired in 2000.
Much like other providers, there can be a tendency to treat conditions with
medication. Year after year, as I moved from location to location, my
medications continued to creep higher. Much to my chagrin, the VA was the first
to work on correcting this problem. Ambien, a common sedative, became the first
adjustment when my doctor rewrote my prescription for the less addictive
trazodone. Arguing was pointless, for they had directives to restrict harmful
medications. So, they cut me off—cold turkey.
Six days into my withdrawal, my body no longer
craved my Ambien fix in the middle of the night. The entire time, I felt
betrayed by my doctors for forcing this on me. “I’m not a drug addict fighting
some addiction. I just need my Ambien.” As it turns out, I was dependent
(addicted), until I no longer needed my Ambien.
Valued lessons only earn their title when you can
apply them in a personal context.
In 2018, I had my second run-in with The
Shiver. No one presented the moment; it just happened. I stood in my
bedroom and stared into the face of 2x100 mg amantadine, a 100 mg trazodone
tablet, 6x10 mg baclofen tablets, 2x10 mg dalfampridine tablets, and 8x25 mg
diphenhydramine tablets.
My otherwise shitty holds on to this as one of my
“Do I really want to live this way?” moments. One at a time, I played with my
medication. If I could stand five days without the drug and nothing changed
(positive or negative), I stopped taking it.
My amantadine tablets were the first to go.
Nothing changed.
When I stopped taking my dalfampridine, nothing
changed.
I stopped all six baclofen tablets, dropping my
body into a solid week of withdrawals. On multiple occasions, I argued, “I’ll
just take a few to get past this feeling.” Classic dependency. After a week,
the itching stopped, but spasticity remained at night. I needed one, sometimes
two, tablets for legitimate reasons, but cut my diphenhydramine down to two,
sometimes four.
Taking charge of my medication needs pulled me a
few steps back from that invisible cliff of dependency. I have never claimed
victory over the threat of addiction, nor will I make that arrogant statement
in the future. After chastising me for making adjustments to my medications
without consultation, my doctor praised the results.
Six years have passed since I faced those demons.
The time could have been seconds when I stared into The Shiver
last week. For five days, spasticity has not been present in the middle of the
night, just the dependency on those pills. I was up before each dawn,
scratching that urge buried just beneath my skin. Dependency leads to
addiction; withdrawal reflects dependency. I don’t need the pills, but I wanted
them.
That’s not reason enough to give in.
Note 1: Oh, about the peeing thing. As a consequence of my multiple bladder diverticula, my doctors presented me with three options: medication, surgery, or a permanent catheter. Convinced that I was not quite there yet, I declined all. Throughout the day, I manage my need to urinate before it becomes uncontrollable. On a regular day, I pee 12-15 times. While annoying, it is manageable. I don’t awaken at night until the urge is irresistibly strong, as in “you’re not going be able to get up and walk to the bathroom” strong. My handy urine collection bottle rests on my nightstand, next to my little plastic cup with one baclofen and two diphenhydramine sat (unused for five days). When I get up two, three, or four times a night to pee, I unscrew the cap and brace my body against the bed. It’s a minor consolation to make so that I don’t need more drugs, surgery, or a permanent catheter.
Note
2: Stories
of my treacherous dance with drug dependency and addiction should stand alone
like a well-crafted sermon preaching rejection of the temptation of sin. While
you might think that my pee bottle sidebar waters down (pun intended) the rest
of my blog, there is a connection. At 5:39 AM, my body realized more sleep was
not in the cards. After a mere six hours in bed, I crawled out from under the
covers for my all-too-often ritual. In a literal “Aha!” moment, I realized my
six hours of sleep were unbroken. There were no pins and needles in my body
pulling me from my sleep so I could pee, so I could take more medicine, so I
could go back to sleep.
That was the sixth night. A sample size of one
means nothing, but it sure does send my imagination into overdrive. Correlation
does not imply causation, but it sure does put a spotlight on tonight… And the
next… And the next… Can I reduce my dependency on medications that, though
beneficial in the past, hamper my body’s ability to repair itself?
Note
3: One
remarkable byproduct of the damaging effects of my multiple sclerosis is that I
can no longer type my stories, blogs, and thoughts. I use voice-to-text
software to capture my words. I often think aloud before ever intending to
write. The question, “Can I reduce my dependency on medications that, though
beneficial in the past, hamper my body’s ability to repair itself?” was an
accidental transcription, never meant to be a thought I would share.
My body’s ability to repair itself.
How am I ever going to get that obsession out of
my mind?
To
be continued.
Tonight
is the seventh night.
Note 4:
The day began at 6:45. My Fitbit logged 7:17 hours of sleep, 1 hour total time
awake, got out of bed one time to pee. In my world of multiple sclerosis, that
is an excellent night of sleep!
To
be continued, I’m sure.
Because it is a fight.
The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why, come hell or high water, I will ride
again!
Never Stop… Never Quit…®
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donate today: https://mssociety.donordrive.com/participant/Rogue
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