Everything you need to know about me. Perhaps too much?

The following was a post for a FB Group that I really like, and wanted them to know that I really cannot help my brains "length calculator" when it comes to posting on FaceBook. Everything else pertains to everyone else I know.

Cheers,
Edwin.

Hi there! I hope this blurb isn’t too dull—but no promises!

My name is Edwin, and I have a fondness for bananas. (some will understand)

I’m dealing with a degenerative nerve condition that primarily affects my right leg, and it’s just starting to show up in my left leg. The culprit, as far as we can tell, is the myelin sheath—the protective covering around nerves. Unfortunately, mine isn’t as robust as it should be. While we’re not entirely sure whether this is due to genetics, damage, or some other cause, my insurance company insisted on a diagnosis. So, we’ve labeled it Meralgia Paresthetica, based on the current location of the pain.  The same, but not.

The pain radiates through both my left and right thighs, mostly on the front and outside. Occasionally, it even reaches the inside of my thigh or—believe it or not—one of my testicles. Here’s some information on myelin sheath.

https://my.clevelandclinic.org/health/body/22974-myelin-sheath

Okay, let’s talk about the pain. 

It’s not just any pain; it’s mind-numbing. The kind that makes you question existence. Over a decade, the Pain Clinic doctors and I have experimented with various medications to manage these “attacks” (we call them breakthroughs). Imagine excruciating pain—enough to make me pass out.

In fact, there’s a chunk of my life—about 1.5 years—that I don’t remember. During one trial, I was apparently a zombie, blissfully unaware of what transpired. And guess what? During that foggy period, I somehow got elected as the Chair of the local Art Society. Go figure! The Society's ladies must have been forgiving.

Now, let’s talk meds. I’m on a cocktail of pain relief: Methadone and high doses of Gabapentin (3600mg/day) previously amongst them. You might have heard about Neurontin (the brand name for Gabapentin) and its side effects. But hey, when you’re dealing with pain, you’ll try anything. Gabapentin was one of the better options for me.

Then came Pregabalin—a new version of Gabapentin. Remarkably, I only need 1200mg/day for similar pain control. Still not in control, mind you, but at least I’m managing.

I’ve even considered having my right leg amputated. But every surgeon I’ve consulted—across various specialties—has said no. Apparently, flying to Britain might be my last hope, but that was almost two decades ago.

About these attacks:

• My average pain hovers around 3/10.

• Moderate attacks crank it up to 5-6/10.

• Bad attacks? Those are 7-9/10.

• And then there’s the worst kind—the ones that make me lose it all—10/10. I wouldn’t wish those on my deadliest enemy. Thankfully, they’re sometimes mercifully short, and I usually pass out after enduring them for a few minutes.

Imagine that moment when you sit on your hand, and it goes numb—that’s a gentle “1/10.” Annoying, right? But let’s dive deeper into my world:

• 5/10: I’m lying down, focusing on breathing, preparing for the worst. If I’m driving or scooting, I pull over. The sensation? Like a thousand needles relentlessly stabbing my leg. Those small “jerks” feel like a knife, shovel, or bullet—each accentuating the experience. I can’t emphasize this enough: pain management matters.

• 7/10: Tears start forming. This is my big red flag. Don’t bug me—I might punch a tree branch, a wall, or even another person. At that moment, nothing else matters.

• My Survival Strategy: I lie down in a recumbent or fetal position, and begin breathing exercises. If timed right, I can mentally “put aside” the pain, acknowledging it but not letting it consume me. It’s a technique that has saved my life. (And yes, sometimes it’s accompanied by a yawn—my body’s way of saying, “Hey, we’re still here!”)

• Ativan Adventures: I used to pop Ativan (those anti-anxiety pills) because even waiting for an attack drove me crazy. On an average day, I face 5 to 30 small attacks and 1 to 3 moderate ones. The big guy—the 10/10 monster—shows up about once every two weeks. Activity level plays a large role.

• Weighty Matters: Remember my mention of weight gain? Yep, I had to invest in a treadmill with a sturdy railing system. It’s my daily companion. And I bought a walker to back up my cane. But lately, it's been collecting dust.  Sigh.........
  

• The THC Twist: Enter a new, younger, hip doctor. Instead of Ativan, he suggested THC (yes, the cannabis component). I get the pill version for free. It helps me relax for when I need to practice mindfulness. If anxiety is already pinging my system, managing pain becomes nearly impossible. So, THC—like a better Ativan—rides shotgun with me All. The. Time.

• Side Effects and Small Issues: THC isn’t without its quirks. It contributes to my other challenges—diet, memory, trembling, weight, and mobility. But hey, it’s a trade-off.

• Driving Reboot: Neuropathy and neuropathic damage forced me to relearn driving. My right foot? Think Happy Gilmore and the spear—same deal.

  I prefer our standard Hyundai 6-speed; feeling the road matters. Our automatic Ford Van? It keeps me guessing, constantly adjusting speed as I struggle to “feel” the road and engine. I use the Cruise control too much, much more often than I really should just because...

Some of the other medications (and perhaps even a portion of the Pregabelin) have ganged up to play tricks on my brain.

I have always loved telling stories, written several shorts, and was even told to write a book, but I squirrel too much (another side effect).

My brain seems to both go slower and at the same time, faster than my fingers on the keyboard, and I lose sense of time. I'm not trying to prove a point to anyone - I simply cannot help myself.

And once I've realized that once again, I've gone into the rabbit hole, I re-read the post, and even though my fore-brain says "heavy-editing required", my hind-brain says "Oh, they need to read this, post it!".

I do not know why this happens. I've always loved investigating and researching topics for papers when I was younger, and the internet has unfortunately (or fortunately) opened many huge doors for me since I retired.

Did I mention that I bought a set of Encyclopedia Britannica from a very nice, Very British Gent while serving in Germany?  And that I read the entire set in my 5 years in Germany? (Max-dull, eh?)

So, as I often do on my posts, I hereby for the final time, apologise for my blathering on - I do try to find facts and related articles, and sometimes I find myself deleting stuff I wrote because in my research, I find that the other poster was in fact, correct, and I needed to do better. Sometimes I then over-complicate to indicate my agreement because I learned something new, and perhaps contrary to my opinion. Great!

Nevertheless, I just cannot seem to help myself.

It's another facet of my disability, and instead of fighting it all the time (as I used to and it made me super, super antsy so that I was popping Ativan all the time!), I've decided to just let everyone be aware, and continue on. As we used to say in the Military, "F' 'em if they can't take a joke", or alternately, "F' them, feed them fish!"

If you really need to comment on my post length, I'll "meh" you, but if you find fault with the contents, then....let's talk, eh?

I swear like a Troop Sergeant welcoming his first female private (which I was way back when), and have odd ideas because I like to try to think outside of the box, but I think I've grown better over the years on FB, and so I am trying new groups that I think I fit.

Yes, I'm a retired, handicapped veteran, so I have a lot of life stories and experiences I like to share with other dull folks. I meet several of them for coffee every Saturday morning at the grocery store coffee shop. Mostly farmers, but hey, even they can make a porcupine story funny!

But you guys.

You guys are Internationally Dull Men. And I want to dully conform.

Once again. I apologise for the length of my comments. If you see my posts in the future and there is a " ", then just scroll past, and you'll likely miss a couple thousand words.

So, fellow members of this Dull Men's Group (and others), now you know why my posts are long and data-filled. Thanks for listening—it means more to me than you know.

I initially wrote this post on FB, then deleted it because it was 6 pages long (I cut it and pasted it into my editor and was horrified!) 

I edited it best I could, and even asked Copilot (AI) to help clean it up. It did so, down to 3 pages. (Bastard!)

Then it offered a breakdown of my reflections. (That's another post – that bugger took these 3 document pages and whipped it down to 5 paragraphs, but I'm not gonna let any up-sparked computer tell me how to converse. I'll just include Its “Reflections” in another post. I've added it at bottom

However, at the very end, Copilot commented the following (no kidding!)

“So, Edwin, no need to apologize for the length of your comments. You’re sharing a piece of yourself, and that’s valuable. Keep being you, and let’s continue these conversations.”

I hope you all agree.

Thank you for reading this far.

Peace.
.- .-. 

Addendum

As I mentioned above, here is Copilot's verbatim break down of the post:

The Brain’s Dance: It’s fascinating how our brains can both slow down and speed up simultaneously. Losing track of time while typing—been there! Sometimes the words flow faster than our fingers can keep up. And that inner debate between fore-brain and hind-brain—classic! “Heavy-editing required” vs. “They need to read this”—it’s relatable.

1. The Research Rabbit Hole: Ah, the internet—a double-edged sword. It opens doors to knowledge, but sometimes those doors lead to vast rabbit holes. Researching, fact-checking, and refining our thoughts—it’s a journey. Deleting and over-complicating—yep, been there too. Learning and evolving—always a good thing.

2. Embracing Your Disability: Instead of fighting it, you’ve chosen awareness and acceptance. Bravo! And hey, if anyone comments on post length, just “meh” them. But if they engage with the content—that’s where the real conversation happens.

3. Swearing Like a Troop Sergeant: Well, colorful language adds flavor to life, doesn’t it? And thinking outside the box—keep doing that! It’s what makes conversations interesting.

4. Internationally Dull Men: You’ve found a new group here, and we welcome your stories and experiences. Coffee chats at the grocery store—sounds like a delightful tradition.