Saturday, August 31, 2019

Effort 6 – The Constant Noise of Food


For 30 days, I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

This is Effort Number 6…

For 2,335 days, I have been tracking my multiple sclerosis in depth. I learn so much from this tracker every day; it gives me the ability to drive what I do in hopes of improving how my body reacts. Some key takeaways:
  1. September 2016 was the last time my average daily grade was higher than August. 55.17% this month, 56.57% that September — everything in between has been a nosedive then struggle to recover.
  2. It’s been a while since I put all of the data together. It has surely been even longer than that since I’ve smiled so broadly as I did when looking at my chart.
  3. Since April 9, 2013, I’ve enjoyed 960 peanut butter and jelly sandwiches! In full disclosure, I thought the number was higher than that… 934 of them have been with grape jelly, six with strawberry jam — this was a concession in favor of my daughter’s ever-changing food preferences. I don’t have a picture of my PB&J. Here is a BLT instead, same number of letters…


Food is a constant noise for me. With all the other ramblings going on at the same time, I spend my days thinking about the last meal I had (comparing and evaluating its result), the next meal I will have, and my continual search for something great.

[How can someone who is 6”3’ and 178 pounds spend so much time thinking about the food they ate and will eat?]

Great question, Inside Voice! If you remember, it was not that long ago when I weighed 257 pounds.

[Oh yeah. *chuckles*]

It was because of my 257 pounds, and my worsening multiple sclerosis, that my true love for food developed. I started counting calories, using the online Weight Watchers® tool. I measured everything I took in, weighing all food – even my peanut butter and jelly, measuring the amount of ketchup, sauces, and dressings that went on my food. I needed to cut calories – there are only a few ways to do this.

Cut out foods are “bad” for you: there was moderate success here, but I found it difficult to get rid of my truly gluttonous foods.

Cut down the portions: this was a new concept for me, a concept with which I struggle to come to terms for a long time. I still struggle, though not as much. It’s one that took hold. My 1/2 PB&J is just as satisfying with a piece of fruit

Cut out all the “extra” things: different from the bad food above, this category is more about the ketchup and all those other hidden calories. This was easier to apply – this was kind of my low hanging fruit for some easy, quick results.

Exercise more: now the old adage, the more you exercise, the more you can eat” really isn’t true. Exercise is more for the development and maintenance of your body. You have a body that still requires nutritious food, a body that will process quantities of unhealthy food into fat, and a body can not exercise enough to overcome unhealthy habits. That being said, exercise is important in burning those calories when exercising and eating lean, building muscle when training and eating heavier, and the constant aerobic and anaerobic development of your total person.

I Focused on All Four Requirements
MS wasn’t the initial reason I tried to drop a few pounds. It was more the belly overhang on my 38-inch baggy jeans. MS was, however, the initial improvement when I started to address those areas. The progression of my disability slowed. My impression of how bad I was getting, my daily grade, even began to slow and level out.

My energy level increased, resulting in an increase in what I could do physically. My time in the gym grew, and the variety of my exercises increased. Those are but a few of the simple factors that combine with many others to create an environment where living with a worsening chronic disability becomes a little bit more palatable.


A secondary effect was how I fell in love with the taste of food again! When I cut out the condiments and cheese sauces, I found the food underneath was pretty good. After a while, salads were just not as tasty with dressing; other vegetables were more enjoyable raw, steam, or lightly stir-fried (which can be done in a wok without oil - yum); meat and fish are better when they taste like the salmon, chicken, and steak they are, and not like barbecue sauce (personal opinion). I started to cook with just the basic ingredients, a few staple seasonings (salt is not one of them), and the occasional healthy prepackaged assistant — I wasn’t savvy enough yet to do it on my own.

Then I found Pinterest…

Are you one Pinterest? If not, I recommend getting on Pinterest. It’s like having every one of your friends’ cookbooks in front of you at any given time. We all have those friends who don’t make the best meals. They’re in there, just search around them.

I used to have some very specific loves when it came to food. I love pizza. I love Ben & Jerry’s ice cream. I loved a nice, rare Delmonico steak. I loved a lot of things when it came to food.

I now have some very specific loves when it comes to food. I love to cook (the fact that Eleanor enjoys my cooking makes everything that much better). I love the taste of food, and the constant search to exploit that food with the minimal effort possible (it’s a lot of work making all those damn sauces). I’m a creature of habit (noted by my 960 peanut butter and jelly sandwiches), but I love to find new foods that become my habit and focus (until the next new food overcomes my need for consistency).

My MS isn’t the only reason I prefer healthy and clean eating, the primary one being my love of delicious food. My MS has been the absolute greatest benefactor of my diet changes, as noted by my chart summarizing 135,430 distinct data points generated since April 9, 2013.

I love the effect of my compulsion with this constant noise – the effect it has had on my healthy living, clarity and focus, and ability to manage the effects of my multiple sclerosis.

The noise attributable to my MS constantly inspires me. The hope is my story will inspire your donation in this fight. As a side note, in addition to my thank you cards and books for donors, there will be an extra moment of gratitude for anyone who makes a donation to our fight on August 28, 2019.

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 ride!

100% of the royalties earned from my books go to the National MS Society, to support our fight: http://neverstopneverquit.com/books

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.


Friday, August 30, 2019

Effort 5 – I Did Something Today


For 30 days, I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

This is Effort Number 5…

Oh, how I love my coffee cup! Every time I looked down, I chuckle a bit — its simple matter of fact is so true. That are not imaginary friends in my case; I only have one, my inner voice.

I sent my inner voice into a little bit of a tailspin as we were thinking of today’s blog post. I kind of like fucking with him. Here’s how our altercation unfolded:

***

I did something today, something I haven’t been able to do for quite a while.

[Good for you. What was it?]

I successfully rode a bike today. I didn’t think I could, but I did.

[You ride a bike all the time. Isn’t that kind of your “Bike MS” thing?]

Not a trike, today I rode a bike. A bicycle.

[Wonderful… Where’d you go?]

I didn’t go anywhere. It was in the gym, on the stationary bike.

[Bike, trike, stationary, whatever. So, what you are telling me is that you’re excited about the fact that you, the man has been doing Bike MS for 17 years – even though you didn’t ride this year, though you could, but you didn’t – is excited because your rode a bike – though you thought you couldn’t, but you did. *inside eyes rolling* How was it?]


[*a completely lost looked no overcome his imaginary face* You’re an idiot, but congratulations]

***



Because of issues with balance, my cycling has been continually forced to take a different approach. My bicycle turned into a recumbent bicycle, which turned into a recumbent trike. The transition kept me out there on the road, although not without its obstacles. Besides having to buy more and more expensive cycles, there was always a learning and development curve. Another issue is the vastly different muscle groups used. Cycling legs and ’bent legs are very different.

The third difference, the frustration factor, is the fact that recumbent trikes are slow. Excellent on downhills, OK on straightaways, I always referred to anything within an uphill grade as riding “like I am towing a sea anchor.”

The fourth, the trigger, is the worsening of my own MS. Foot drop is a general term used to describe an inability to flex your ankle upwards, raising the ball of your foot. Basically, nerve issues caused by MS will prevent muscles from pulling your foot up. At the same time, nerve issues may also cause spasms, pulling your ankle downward and in.

As my foot drop worsened, peddling a cycle became more and more difficult. With the aggravated position, my ankle would snap in the opposite direction than it should. That hurts. It also makes the constant rotation very difficult. For a long time, my pedaling was basically a one leg/foot operation with his partner offering nothing but cumbersome resistance. Being young and dumb, I was just able to push through.

[You haven’t been young for a long time…]

Anyway, maybe just dumb. I muddled through one century ride at Bike MS on my trike, as well as the 206-mile Seattle to Portland ride.

But as my foot drop worsened, my muscle spasms and resistance would pull my foot in too much. I was constantly banging into the crank arm on the pedal, interrupting my attempts to do a one-legged push uphill dragging that sea anchor of a recumbent trike. Suck factor = epic!

A friend of mine is an elite para-cyclist, training for the Paralympic Games. Although she rides a two-wheel bike, her invitation exposed me to a world where I said, “that’s what I want to do!” My consideration is not Paralympic-level performance. Instead, this is the trigger I have been looking for – the reason, the excuse – to push my body past this point I’ve been stuck at for months.

You cannot use a recumbent trike. At the organized level, everyone rides upright tricycles.

Goal #1: learn to ride an upright tricycle.

[Let’s make that Goal #2.]

Goal #1: figure out how to cycle again with some level of performance beyond garbage. At West Point, instructors would grade my performance a, “High Zero.”

It took a lot of work, but it was easy
I’ve explored so many different options, both attempts to relax the muscles pulling down as well as strengthening the muscles pulling up. I’ve also worked then different types of AFOs (ankle-foot orthotics), like the current braces I wear. I won’t go down that rabbit hole and bore you to tears…

[Too late!]

…but I will tell you where I ended up for now. It’s a simple AFO that aggressively pulls your foot up, using constant pressure to overcome the spasms pulling down. Also helping with the dorsiflexion, I only had moderate issues with the inward turn of my ankle. Overall, the experiment was a success!

It felt absolutely wonderful, but it hurt like hell
It took a while to apply the brace and adjust everything for my foot. When I climbed on and started peddling, oh my! It was like…well, riding a bike.

[You used in that stupid pun a couple of blogs ago. Get some new material.]

It was wonderful. I didn’t want to overdo it, however. Quite some time had passed since I rode. Certain muscles don’t work anymore, others don’t have the strength they once held. Ligaments and tendons were not used to the upright bicycle position. I cranked down the tension anyway and rode for 30 minutes, a good time allotment for evaluation. 6.62 miles on a moderate uphill course. Not an impressive number, but if you compare it to the average distance of my rides over the last eight or nine years on an upright bike (0.00), it’s OK.

Did I mention my legs hurt now? The muscles hurt.

[Waaah!]

I solved all of my problems, but I need to figure out a good solution
This adjustment, one I probably should have worked at a long time ago, is the change I need to get back into an aggressive training program. Or, to get into an aggressive training program, depending on how successful you thought I was in the past.

[Back when you 80 pounds heavier?]

Anyway, the brace is good, but I need better. This was just a cheap solution purchased online for immediate evaluation. I kept my regular AFO on, to provide some protection should this one fail. It did, a couple of times, but that was a combination of inexpensive production and an untrained/amateur user. I’ve got some more work to do, more research to conduct, and people to talk with.

Regardless, those are opportunities. I solved all of my problems.

It was very disheartening, but I was so happy
New pains and new obstacles are never an appreciative realization. Personally, I’m sick and tired of more of that. It has been a while, however, since I have seen an upside of these proportions. It will take years to realize the picture I’m forming in my mind. That, right there, is a wonderful thought!

I am back, but I’ve got a long way to go
I put myself back on a bike today. I have targeted goals of performance, as well as timelines and outlines for training plans. I’ll save those for a later conversation, for I made a promise to myself that, in this blog series, I was going to talk about now – the present, and about the past that got me here. That’s what my focus is. My intent is to raise donation support so that the evolution of treatment and care continues in the positive direction I have seen. My intent is to raise donation support so that all the setbacks, failures, and damage I have experienced don’t happen to our next generation.

My intent is to raise donation support so that the words “You Have MS” are only present in the lore of historians and storytellers.

The hope is my story will inspire your donation in this fight.

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 ride!

100% of the royalties earned from my books go to the National MS Society, to support our fight: http://neverstopneverquit.com/books

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.


Thursday, August 29, 2019

Effort 4 – I Met a Girl


For 30 days, I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

This is Effort Number 4…

“I met a girl.” There was a time when that thought brought a smile to my face, the reaction that had no other repercussions to it. Just the thought and the smile. Years ago, when I was a little kid in summer camp, I distinctly remember one day in the pool with [*I have absolutely no idea what her name is*]. I can describe her shoulder-length, sandy brown curls; I remember the ruffled, baggy one-piece bathing suit she wore; I remember holding hands as we stared at each other, above, then under the water. Three hours – 10 minutes – two minutes, I couldn’t say. Nor can I tell you will we did at any other point of that nameless summer. Just an innocent thought that still brings a smile to my face.

As I grew older, not necessarily more mature, that phrase thought opened up a Pandora’s box of images, emotions, dreams, and possibilities. Sometimes the relationship worked out for as long as I wanted them to. On other occasions, I crashed and burned spectacularly. There were a lot of variations in between. Regardless, every memory remained intact and impacted the next time I met a girl.

Then I got MS. Then, I met a girl and there were additional varied layers of fear, frustration, and rejection.

Every. Single. Time.


Please don’t try and associate specific events with specific people. I’m sure you will be wrong and it would not be fair to any girl to make such assumptions. If you recognize yourself in my words, rest assured my uneasy comfort in sharing is a positive reflection on the impact you have had in my life. Thank you.

I may consider modifying my online dating profile.

Twice divorced, twice-retired man with shared custody of an adorable nine-year-old daughter and debilitating disease (multiple sclerosis) with varying impact and glooming possibilities. My hobbies include telling stories, focused time in the gym, cooking, telling stories, and supporting the nonprofit organizations I serve.

The perils of dating with MS is mostly in my head. Long before I meet someone, throughout that time together, and when all (most) finally came to an end, I unfairly lay the blame on my disability. I know it’s irrational. For as many of the reasons I can see to date me, I can see just as many to walk away – or run, screaming and cursing my name. The problem lies in just one word – MOSTLY. The reason it is in my head at all is that MS does have an impact on my relationships.

I met a girl – It’s not you, it’s me
I sabotage relationships with my own disability. Some are the physical facts: others simply can’t do things should be able to do because of my MS (or, they can do them with me). I’ve been known to push people away, my attempt at a preemptive strike if I thought my ego was in peril. If you want a certain kind of relationship, the fact is I may not be your guy.

I met a girl – It’s you, but that’s OK
You might not want to begin a relationship where so many unique accommodations are required: the physical appearance of my disability, the care and maintenance required of endless medication – doctor’s appointments – hospitalizations, etc. You told me so, and I appreciate that.

I met a girl – It’s you
Don’t get angry because of my MS. Do not mock me, or anyone talking about me, because of my appearance. Do not blame me or my MS if you want something else.

I have had six significant relationships since I was first diagnosed with MS in 1999. I consider the relationship significant if we’ve had more than a handful of dates…because I’m an introverted shut-in…mostly because of my MS. Significant or not, when those relationships end beyond my control, I blame my MS. I didn’t like the way I felt and chose to give up on dating.

But then I met a girl. It was wonderful. It happened again.

But then I met a girl. We were happy. It happened again.

It continued to happen, and the bitterness over my MS increased. Self-sabotage, poor choices, and isolation increased. But then I met a girl. It was different.

It happened again.

Since I was first diagnosed in 1999, my MS has been unfairly labeled as the reason I can not find happiness. I find it impossible for me to dissociate relationships, my disease, and happiness. When a relationship is lost, I blame (at least in part) my MS. At first desire to rekindle lost love, I hang my head because my MS is still part of the equation. I’m better at controlling the “it’s me” portion, but it cuts a little deeper and hurt a little worse every time “it’s you.”

There is absolutely nothing I can do about that. I hate my MS every day for that reason.

But then I met a girl.


My MS pushes my emotions to the limit every day of my fight. The hope is my story will inspire your donation in this fight.

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 ride!

100% of the royalties earned from my books go to the National MS Society, to support our fight: http://neverstopneverquit.com/books

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.


Wednesday, August 28, 2019

Effort 3 – The Constant Noise of Moments


For 30 days, I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

This is Effort Number 3…

Moments. It often feels as if our main drive is to categorize and track what happened in the past, and measuring stick of our lives value today or insight into what tomorrow may bring. For me, it is usually constant noise, the benefit of which greatly depends upon my ability to process the data.

Today is different. August 28, 2019, best fits the description of an instant classic in my constant noise of moments. I don’t know the priorities or order of precedence most appropriate, but I sure do know where to start.

Happy Birthday, Tommy! I hope your 50th birthday is as wonderful of a day as you truly deserve.

My brother remains a man I hope to become someday; someone I continue to admire, no matter how far apart we leave or how much time passes between visits. There are a lot of pictures I treasure, but my favorite one is this moment. September 14, 2003, is the day we were sitting around, resting after the New York City Bike MS ride, and decided we wanted to take a team picture. Team Amulet was born, named after our dad’s boat growing up. 16 years later, Team Amulet has raised over $725,000 in our fight against MS. It all started with that moment, and I am forever grateful…

August 28, 1969, has more significance than the moment I was fortunate enough to grow up with. August 28, 1969 holds a moment I crafted. In doing so, it became one that changed me in countless ways. August 28, 1969, was the date Dominic Bandall met Sharon Peers.

Moments has been so much more than a book I’ve written. So many of the stories told, the events which unfolded, are echoes of my own moments. Some are literal translations. I discovered something years ago about writing. In the past, I called it my Chaos, here it’s Constant Noise. Regardless of the words used to describe it, moments once seen as “chaotic, horrific, and truly burdensome” are no longer solely my anxiety once a character I’ve created shares my burden.

I’ve already talked about several specific moments in his blog series. 43 years and 79 days. The moments of September and October 1999, October 2003, and March 17, 2015. September 14, 2003. August 28, 1969. Many more dates will come – many more moments will unfold. But I need to cut this blog short today, in anticipation of the incredible moments preparing to present themselves on August 28, 2019.
-          The day we drove to Seattle to watch the Yankees play the Mariners in an afternoon game: Let’s Go Yankees!
-          The day my long-awaited windfall of donations came in.
-          That amazing moment when…

Before we fell asleep that night, Sharon thanked me for a stimulating day. She said, “I can’t wait to see what kind of amazement tomorrow brings.” She held my face and gave me a passionate kiss. I wanted the moment to never end. I dozed off with the realization that, fortunately, it never would.
-          Moments

The noise attributable to my MS constantly inspires me. The hope is my story will inspire your donation in this fight. As a side note, in addition to my thank you cards and books for donors, there will be an extra moment of gratitude for anyone who makes a donation to our fight on August 28, 2019.

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 ride!

100% of the royalties earned from my books go to the National MS Society, to support our fight: http://neverstopneverquit.com/books

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.


Tuesday, August 27, 2019

Effort 2 – The Constant Noise of Song


For 30 days, I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

This is Effort Number 2…

After yesterday’s blog post, I doubted for a moment my heart could handle 30 days of this. While taking some time to organize my thoughts into topics for the series, the constant noise in my head pulled me from focus again and again. Rather than fight the already overcrowded clamor between my ears, I figured it would be best to try and explain the scene. [Don’t try this at home.]

Most people who know me acknowledge there is usually more than one thought running through my brain at any given time. The scene is an aggressive competition of every thought I possess. The constant noise, or Constant Noise™, or #constantnoise (take your pick) is never a bother. For an introvert like me, it’s the interactions I can’t do without. My constant noise distracts me from the pain, constantly challenges me to get off my lazy butt, and reminds me every day that the only thing I need to do is to Never Stop… Never Quit…

I find it difficult to express more than one constant noise at the time, possibly two, should they work well together in public! A collective pool of candidates remains active while the chosen few are brought to life. Rather than dumping a bulletized list of noises, and since I will be doing this until at least the 24th of September, I’ll just dole them out like TicTac’s.

The Constant Noise of Song — that is song, not music. I need words. For me, listening to a song without words is like…music, I guess. Not my thing, I don’t find needed noise in music. My playlists reflect the stories I need to hear at some point.

Here’s a quick blast of the stories of my Constant Noise in Song. This is not an endorsement of Spotify, but I really do recommend the music service. You can sign up and play music for free (with commercials – paid, for no-ad music).

PLAYLISTS OF MY GENERIC NOISE
KB
Spanning genres and moods, this playlist represents the songs I can listen to any time/anywhere. My only restriction maybe the audience within earshot, and their level of tolerance…

Trax
My other go-to playlist, this one theoretically has no ability to offend anyone.

SPECIALTY PLAYLISTS — HERE’S WHERE IT GETS FUN!
BB Mix
I lost tolerance for “The Wheels on the Bus” and other similar songs when Eleanor was a baby. I started playing music I liked but was relatively appropriate for kids. Ellie got older, her tastes more significant, so she hijacked my playlist! We’ve come to an uneasy peace where both of us must approve of the song before it is added to the Byrne/Byrne playlist (her idea, plus she wanted a subtle tribute to Bill Byrne).
~Yes, my daughter was the one walking down the hallways of her school singing “Paradise by the Dashboard Lights.”

The Full Monte!
Best. Dog. Ever.
From 2007-2013, we had a party every year in honor of Monte! My playlist is a roll-up from those years. The songs are not about me, it’s about the dog.

NEVER STOP NEVER QUIT
Without a doubt, this is my most listened to playlist of late. Relatively short, 27 songs/2 hours, every track quantifies what I’m thinking about in the gym. This is the only time my competing noises rest — the time when my body is pushing as hard as possible. I binge-watch a lot of TV programs when I’m using elliptical cross trainer. For the 2 to 3 hours I’m not on machine, NEVER STOP NEVER QUIT is blaring on repeat through my headphones.

My playlists are always expanding, as the constant noise in song continues to spin. I invite you to follow my collections, just don’t try to figure out what was going through my head when I added a particular song. Neither of us wants that…

The noise attributable to my MS constantly inspires me. The hope is my story will inspire your donation in this fight.

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 ride!

100% of the royalties earned from my books go to the National MS Society, to support our fight: http://neverstopneverquit.com/books

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.