Friday, November 15, 2024

She Redefined My Reason to Fight

 

Only your child can upend the values and tenets you have embraced for years. Rogue accomplished this without a discussion. She never questioned my convictions, nor did she offer alternatives.

She stated a fact.

Never Stop… Never Quit…

In 1993, one observation seeded the passion in me to confront the merciless onslaught of my foe. It was six and a half years before I faced my first enemy—multiple sclerosis.

Another decade would go by before I wrote a blog for the Department of Veterans Affairs MS Center of Excellence. It was my second submission. Never Stop, Never Quit shared that fated story. Little did I know what would happen after 14 more years. My story became a mantra; my mantra became our charity. Everywhere I go, whatever I do, I see that calling. It’s written on plaques in my home, embroidered into T-shirts, and even tattooed on my arm.

With an indifference to the impact her words would have on my life’s endeavor, she ran a finger across the mantra and said, “It should say for them.” I asked why she thought change was appropriate, but she only shrugged. After thinking about her declaration, I asked who “for them” represented. With a simple, “I don’t know,” Rogue chastised me for even raising the question. I could see the conversation in her eyes.

It’s so obvious, why would I waste time trying to explain myself?

She was right. It was obvious the moment those words passed her lips; I just needed time to understand how her comment, and everything she didn’t need to say, rang true.

Why do I fight?

    To increase awareness of our needs.

Why?

    To raise money.

Why?

    To fund research and development of treatment options.

Why?

    To overcome, cure, reverse, or prevent the debilitating effects of multiple sclerosis.

Why?

    …for them.

Why else do I fight?

    To reach out and connect with others fighting against multiple sclerosis.

Why?

    To increase awareness of the options, research, and support available.

Why?

    …for them.

Fighting for no other reason than to fight, destroying something simply so it no longer exists, even donating just to donate are exercises in futility if no one will reap the benefits of our sacrifices.

It was, is, and will always be for them.

Rebranding may take some time.


 
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 we fight for them!

 

Never Stop… Never Quit…®

Follow, Shop, or Donate Today: https://NeverStopNeverQuit.com

Thursday, November 14, 2024

Episode 02 – I’m Afraid of the Dark

 

How to Thrive with this Disability

Episode 02 – I’m Afraid of the Dark

Watch my video: https://youtu.be/pyiWShBJTIk

Bullshit and rambling have no place in this recommendation, so I’ll be short and to the point.

Fumbling around in the dark, walking in a room without lights, is a recipe for disaster. My balance issues take concentration to overcome. There are three aspects to balance: visual (what you can see), vestibular (the three fluid-failed canals of your inner ear), and proprioceptive (movements and pressures on your body). I have one functioning sensory input, what I can see.

I don’t attempt to walk around in the dark. If I wake up in the middle of the night, there’s a light close to my bed. One command, “Alexa, night light on,” and I can see. Every room in my house as a light I can turn on using my voice.

In this day of insane technology, smart devices, and AI-assistance, I use mine to turn the lights on. It has a few other values, like controlling my music and cooking timers, but I speak to my Alexa device countless times a day to turn the lights on and off.

Use technology to your advantage.

If you don’t want to invest in too much, here are some low-cost ways to keep yourself safe:

Amazon Echo Pop (newest model): $39.99 (you can get a cheaper or use Rakuten to find a rebate).







Smart Plug: $18.99/4-pack (there are tons of options out there, this is what I use).






Don’t let MS leave you in the dark

This is one thing that helps me live and get through this so I can celebrate the miracle of countless tomorrows. I want you to be there with me as well. We are in this fight together!

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 we fight!

 

Never Stop… Never Quit…®

Follow, Shop, or Donate Today: https://NeverStopNeverQuit.com

Wednesday, November 13, 2024

Episode 01 – No Longer a Game of Inches

How to Thrive with this Disability

Episode 01 – No Longer a Game of Inches

Watch my video: https://youtu.be/s0J-IRA966g

My fight against the devastating effects of multiple sclerosis is now a game of millimeters, 1.2 mm to be exact! Let me get to the point without too much rambling.

The difficulty in raising the front part of my left foot led to walking difficulties. Increased falls are a constant danger. My poor gait (the pattern my limbs move when I walk) created further problems, placing awkward strains on my joints and spine. Avalanches of issues began to put everyday living at risk. Hip and knee problems developed. I now have moderate scoliosis (sideways curvature of the spine).

This change began around 2012.

Foot drop was one of the first noticeable symptoms when I began to develop secondary progressive multiple sclerosis (SPMS). This issue predated the rest of the atrophy on my left side. Trips and falls became common occurrences before any formal SPMS diagnosis. Blah, blah, blah…I underwent multiple treatment and brace options before settling on the ankle foot orthosis (AFO).

The concept is simple. A semi-rigid carbon fiber medical device system sits under your foot, preventing it from angling down when your leg raises. Not perfect, but better!

Unrelated symptoms pop up in my life with multiple sclerosis on a regular/constant basis. Aches and pains become the effect without a direct correctable cause. Joint issues, scoliosis, you name it, they’re all there. That’s just life with multiple sclerosis. In the Army, we would say, “Suck it up and drive on.” So, I do.

Eleven years after finally receiving my first AFO, frustration over this off-balanced sensation got me thinking. My left leg feels longer. It feels longer because it is. 1.2 mm longer, to be exact. It’s called LLD, for Limb Length Discrepancy. According to the National Children’s Hospital webpage “Limb Length Discrepancy (LLD),” evaluation and treatment options should be considered “when the difference measures more than 1.5 to 2.0 centimeters.”

I have no medical training, and no medical professional ever raised this issue, but the 1.2 mm discrepancy caused by my AFO is the source of pain and imbalance in my gait. It is not the only source, but a significant cause. This is my personal diagnosis and opinion. At some point, I will review everything with a physical therapist or my doctor.

I purchased this Carbon Fiber Insole and slipped it into my right shoe. The change was instantaneous! I felt as if my balance footing was restored. My hip hurts less. I noticed a reduction in the times I catch my foot on the ground or swing it outward as I step. Increased confidence in my gait for the last four days is a welcomed reprieve from ever-worsening multiple sclerosis issues. Improvements are always welcome!! Combined with the benefits I received through my PoNS device therapy last year, I’ve pulled something back.

Take that, MS.

Here’s a link to the Carbon Fiber Insole I purchased: https://www.amazon.com/dp/B0BYNSN2Z9. Well worth every penny.

This is one thing that helps me live and get through this so I can celebrate the miracle of countless tomorrows. I want you to be there with me as well. We are in this fight together!

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 we fight!

 

Never Stop… Never Quit…®

Follow, Shop, or Donate Today: https://NeverStopNeverQuit.com

Monday, November 11, 2024

Episode 00 – Thinking out Loud

How to Thrive with this Disability

Episode 00 – Thinking out Loud

Watch my video: https://youtu.be/a83O_Nym99Q

Think of a time when you were doing one of the thousands of mundane tasks that get you through the day. Walking to check the mail. Writing an email. How about just getting out of bed in the middle of the night to go to the bathroom? Performing these tasks can be so routine that half the time you’re probably thinking about something else, just letting your mind drift away. Describing how you do them would probably qualify as the most monumentally boring part of any conversation.

There’s no such concept as monumentally boring when I do anything. With multiple sclerosis, if a task is not difficult to impossible, it is painful. If it doesn’t hurt now, I’m walking a razor’s edge on further injury to myself, someone else, or causing a whole crap load of damage.

Nevertheless, I continue to live. Some days, I even thrive. Like the old saying goes: Never Stop… Never Quit…!

After bike MS this year, when I was sending out my fundraising after action report emails, a longtime friend offered one of the greatest compliments. “I don’t know how you do it, KB.”

I get that on occasion. Sometimes, it’s a compliment (“I don’t know how you do it! That’s awesome!”). Other times, it’s a question (“I don’t know how you do it. Can you show me?”).

Living with a disability is a constant game of trying to trick the system to give me a bit of advantage. Take some time to share a few of my favorites with you. Helpful hints, useful gadgets, crafty tricks, they’ll come in all shapes and sizes. Whether obvious or crafty, these are the things that help me make it through the day with a smile on my face (as opposed to a frustrated, injured scowl).

I will write up a little blog post like this and recorded video to demonstrate.

Questions about something you want me to discuss? Recommendations or ideas for a new post? Drop me a DM on my social media or leave a comment.

These are things that help me live and get through this so I can celebrate the miracle of countless tomorrows. I want you to be there with me as well. We are in this fight together!

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 we fight!

 

Never Stop… Never Quit…®

Follow, Shop, or Donate Today: https://NeverStopNeverQuit.com

Sunday, October 27, 2024

Approaching the Close of My First Journey

My Dear Friends,

October 1999 was a month of turbulence and turmoil like no other. The images of me on both ends bear little resemblance to each other. At September’s end, I had the firmness of purpose necessary to advance in my career as an attack helicopter pilot and Air Cavalry troop commander. By November 1, multiple sclerosis erupted, stripping everything I thought important from me.

My commemoration of this 25th anniversary has been a storytelling revisit of the day-by-day events that redefined me. If you haven’t seen the flood of video posts on my social media accounts, you can check them all out on my YouTube collection: https://www.youtube.com/playlist?list=PLwMsWD-UtliW3mOlsFCYm46gE4ikkfa-o. This includes the Century Ride bike MS event that took place in my garage on October 6. My worsening MS will probably keep you off the road, but it can’t dampen my determination

I’m pausing my daily chronicle until that November 1 medical climax to Act 1 of my journey. This week focuses on who multiple sclerosis shaped me into over the past quarter-century.

·         Yesterday, I announced a permanent link to share free copies of my six published e-books. You can get them here: https://books.bookfunnel.com/neverstopneverquit.

·         On Tuesday, I will participate as a patient ambassador for Helius Medical Technologies, manufacturer of the PoNS device I used to strengthen and improve my walking. The webcast will take place on Tuesday, October 9, from 3 to 4 PM (Pacific time). Here’s a link to the event: https://teams.microsoft.com/l/virtualevent/750668f1-dbf8-444c-969c-d3dbf90d5266@db9b84b1-be3a-48ac-8cac-c53b7a4b72b8.

·         KATU News (ABC affiliate) will come to my house on Wednesday to conduct an interview. Their Everyday Heroes segment will honor Veterans Day by highlighting my military career, transition, and journey with multiple sclerosis. I will update everyone when the segment is aired.

·         A slew of special announcements and promotions will scatter themselves throughout the week. Stay tuned for more…

All my efforts have a singular purpose–to overcome the debilitating effects of multiple sclerosis.

For those battling the disease, I want to demonstrate the paths we can forge to do much more than just survive. We can thrive! Physical, mental, and emotional programs are much more than therapy. They are our lifeline, ones that I need to support and promote.

YOUR DONATIONS will fund the necessary research and development to develop a cure.

For our future, I want to make a positive sledgehammer impact in our efforts to defeat MS entirely. We will need to create a cure, for there is nothing right now that can completely halt, reverse, or even prevent multiple sclerosis. Creation efforts require talented researchers to research and develop treatments. To do that, I need to help raise the critical funding that will support these efforts as we make our way across the finish line.

YOU are one of the most essential pieces of this chain.

Everything I do comes back to my need to earn your valuable donations to support our fight. Your money will fund scientific research and development to create that cure. The massive array of programs needed to support and better those battling multiple sclerosis today require the donations I am asking from you today.

I will amplify my efforts to talk to talk as my body continues to walk the walk.

With my debilitation on full display, I will pursue our goal to create a world free of MS.

We need your donations and support to create the cure that will defeat MS before it destroys another generation.

Donate here: https://NeverStopNeverQuit.com/donate

Donate direct to the National MS Society: https://mssociety.donordrive.com/participant/Rogue

Either way, 100% of the money you donate will go to our fight (Rogue’s Bike MS campaign).

All donations are tax-deductible.

You can follow my story through blogs, videos, and social media posts. Everything is there for you to stay up-to-date or go back to the beginning.

My stories: https://NeverStopNeverQuit.blogspot.com

My videos: https://www.youtube.com/playlist?list=PLwMsWD-UtliW3mOlsFCYm46gE4ikkfa-o

My social media:

     https://www.instagram.com/KevJByrne

     https://www.facebook.com/NeverStopNeverQuit

     https://twitter.com/NStopNQuit

     https://linktr.ee/KevJByrne

Multiple sclerosis continues to decimate my body. Rehabilitation and training are a constant effort. It’s an informal contract between my body and me. I will delay the inevitable, using my time to help create that world free of MS our next generation deserves. Graphic displays telling my story are the best way I can raise awareness of our desperate need to find a cure.

Your support and donations are the critical next step in our fight to create a world free of MS. Please join us in 2024!

Love,

Kevin

Never Stop… Never Quit…


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 we fight!

Never Stop… Never Quit…®

NeverStopNeverQuit.com

Tuesday, October 8, 2024

The Mental, Physical, and Emotional Limits of MS


My Dear Friends,

Today is an off day, a chance to rest and recover from an event that deserves the lofty designation “one like no other.” In my battle against the debilitating effects of multiple sclerosis, Sunday was a victory in every sense of the word.

The physical challenge was obvious: ride 100 miles on my recumbent trike, mounted to a trainer in my garage. There was no easy way out. With a stationary trainer, my tire stops spinning the moment I cease pedaling. There was no coasting or extended downhill ramp where I could rest and recoup before the next stretch.

My ride began at dawn, with temperatures clinging to 44°.

Rest stop #1 was at the 14-mile mark, just under an hour in. This is a typical break early into any extended ride, just enough time to warm up my body and machine, making any tweaks needed for the rest of the day.

Far from being just “any extended ride,” my setup was uniquely tailored to meet an odd assortment of needs. I skipped some standard bike gear, like a helmet, gloves, or glasses. My recumbent trike remained in the garage, mounted to the trainer. There was no need to steer and no risk of crashing–two big reasons I can’t be out on the road anymore. My trade-off for no wind whipping a cool breeze across my overheated body was not having to lather suntan lotion or worry about sunburn. My lost opportunity to enjoy stunning countryside scenery was offset by the chance to binge-watch TV and movies on my tablet! Beyond that, it’s a lot like every other extended ride. Long, lonely stretches of nothing but the sound of my spinning bike sprocket grinding in its metal-on-metal clash with the bike chain, and a persistent hum of the rear tire as it rotated approximately 76,500 times throughout the day.

The second rest was after 1:40 hours, another 22 miles. It was not so much a scheduled stop, but an emergency pee break! The quick hop-off/hop-on plan fell to the wayside when I stepped back into my garage to the sound of metal clatters and joyous cheers! Nine Oregon bike MS family members were under a pop-up tent in my driveway, decorated with motivational signs and a table full of treats. My first thought was, “How long was I in the bathroom?” They swore it was a quick setup (maybe I fell asleep there…). Support for me was the only reason for their loving efforts. I savored every moment, wishing to spend more time celebrating. Alas, those final 64 miles would wait no longer.



After being fueled by three of the donuts my friends brought and charged from the energy they lathered me with, the next 64 miles was a straight shot that took 4:06 hours. Actually, I rode 63.8 before I stopped to set up my last-mile promotional video and fundraising appeal: https://youtu.be/40SOTIaY_D0.

Sunday was not the first bike MS century ride run from my garage. Covid restrictions in 2020 forced my revamp that year. MS demanded the concession this time. While the rest of the Oregon Chapter rode two weeks prior, layered MS symptoms kept me sidelined. Second-degree burns on my feet, a result of hand spasms while carrying boiling water, were a temporary setback. The atrophy on my left side could be a permanent restriction from the open road. If 2025 is another garage ride, I may need to up my decoration game!

Ceremonial pomp and theatrics are always a part of organized bike events. Grueling rides where you gotta dig deep for those next few miles resurface every year with tedious regularity. We all signed up for that game when we bought our bikes. Bike MS is different. When I ride, there is always a reason that this year has a greater impact than the past. October 6, 2024, was the pinnacle of my rides, spanning five states since 2003. Twenty-five years prior, on October 6, 1999, I first faced the words “possible multiple sclerosis.”

Watch me when I shared my Day 0 story: https://youtu.be/j_ASrGFi5X4.

I had no idea what MS had in store for me, much like I have no idea what it will throw at me tomorrow. This is what I know.

Multiple sclerosis will not stop its ruthless assault on my body. It has made me an example of what it will take from people, how it will twist and distort their existence until few can remember who they were before they got sick. Multiple sclerosis will continue to turn me into someone who will lose until, either through lengthy erosion or by an epic tragedy, it takes my life.

I will savor every fight until that day comes. No, I will not win, but my voice, words, and example can help create a world where we have defeated MS. That world will only exist when we design the cures to prevent this disease and develop ways to overcome its debilitating effects. Those creations will only come from a laboratory through scientific research and development. R&D will only be successful if we find the initiatives.

YOUR DONATIONS are one of the most essential pieces of this chain.

YOUR DONATIONS will fund the necessary research and development to develop a cure.

I wish my body had the energy to call every supporter and articulate our needs. The plan for my life in the next year, five years, ten years from now will never take shape because the thought of what MS will do to me before that time is terrifying.

I’m glad my body had enough in to ride on Sunday. Now, I want to use my words:

- first priority is thanking those who have already supported through generous donations directly to the National MS Society or through NEVER STOP NEVER QUIT (100% of all money goes to the MS Society). I have a few ideas, and I think my token of appreciation will be memorable.

- next up are more stories from 1999, telling you how I first navigated through the darkness. As you read about every experience and every setback, please remember that someone is going through a similar experience right now for the first time. It will happen again tomorrow, the next day, and the next until we create the cure.

- I will take time to describe what it’s like living this way. Changes and setbacks are just a part of life for me—I don’t give them a second thought—but you may be surprised to see how MS dominates even the most mundane parts of life. All the while, please remember that I am not the only one stuck with this future. Our numbers continue to grow as more people develop MS every day.

Multiple sclerosis uses clever tricks to chip away at my body and take my ability to participate in the moments that I hold dear. In 2024, it tried yet again to take bike MS from me. On October 6, I fought back. There are no small victories in the fight against the debilitating effects of multiple sclerosis. Every victory is a cause for celebration! My wins will become rarer as this disease continues its onslaught, but I am going to savor each one.

My debilitation is on full display. I will continue to share the physical, mental, and emotional anguish through every medium possible. Think of my ramblings as frightening tales of adversity surrounding moments of sarcasm and levity, all sprinkled with a constant edge of determination. In whatever way you receive my tales, please keep in mind the single message: We need your donations and support to create the cure that will defeat MS before it destroys another generation.

Direct to the National MS Society: https://mssociety.donordrive.com/participant/Rogue

Through our charity: https://NeverStopNeverQuit.com/donate

Either way, 100% of the money you donate will go our fight (Rogue’s Bike MS campaign).

All donations are tax-deductible.

Thank you for your continued love and support!

Never Stop… Never Quit…

Kevin


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 we fight!

Never Stop… Never Quit…®


NeverStopNeverQuit.com


Please follow my updates through social media:

https://NeverStopNeverQuit.com

https://www.instagram.com/KevJByrne

https://www.facebook.com/NeverStopNeverQuit

https://twitter.com/NStopNQuit

https://www.youtube.com/watch?v=tQQ9LT1tJYw&list=PLwMsWD-Utl...

https://linktr.ee/KevJByrne

Saturday, September 28, 2024

What Is Still Within My Control?

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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