Tuesday, August 8, 2017

2017 Bike MS After Action Report (AAR)

More pictures to follow!
I share this report with you with the understanding that the only chance I have for a healthy future will come from new research and development. Please donate today to support our fight and share this message with as many others as you can.

As we rolled into 2017 Bike MS, much of my hopes and prayers rested upon the adrenaline boost I’ve come to cherish and depend on. My friend didn’t let me down! I’m grateful and proud to report my 15th annual NMSS event was a smashing success.
We arrived in Monmouth, Oregon facing 97° temperatures under a blazing clear sky. Team tent set up was quicker than normal, basically because I slacked on my team captain duties and did the bare bones minimum. My body held out for a few hours, thanks to that adrenaline and the opportunity to reacquaint with so many incredible friends. Fortunately, Eleanor was there to be my excuse for heading back to the room early and calling it a night. I knew Saturday was going to be a trying day; I still had no idea what my body would be capable of when the time to ride finally arrived…
My self-pity clouds started to amass early, as I realized how much longer everything took: 20 minutes to dress, 15 minutes to walk and reach our team tent area, 20 minutes to put my bike gloves on. Fortunately, I had help pumping my tires and ratcheting down my bike shoes (a humbling experience to have others care for your basic needs). I lumbered into my recumbent trike; suddenly I was transported back to the summer of 1999. After being grounded for 2 ½ years (the car accident which probably triggered my MS) I finally crawled back into the cockpit of the Apache helicopter. Like then, everything suddenly felt right and comfortable. A smile came over my face as I proudly boasted, “You got this!” Much like the day before, I just didn’t know how long my burst would last.
There were a variety of routes this year, ranging from 19 through 105 miles. I conceded the short route would be in my best interest, hoping to make at least that far. So, I headed out once again, alone with my thoughts and my music to keep me company. The route split off quickly, with a right turn for the 19-mile course and everything else to the left. It turned to the right and rode.
About a quarter-mile into the new course I cursed myself and turned the bike around. The only thought going through my head was, “If you finish 19 and make it back comfortably, you will be pissed at yourself for leaving it on the table.” I turned around and backtracked to the direction of everything else. The next split was easy. 32/45 one way, the remainder of everything else went the other. I knew my body wasn’t going past 45 miles. I still wasn’t sure my body would make 32… or 19… or less. I made the 32, and I’m proud to say I left absolutely nothing on the table!
It was an interesting little science experiment to watch my body struggle through 32 miles in the Willamette Valley. My left side bears the brunt of this disability. My hand wrapped around the steering post as it quickly cramped up. Breaking was not an option on the left side, shifting gears difficult and cumbersome. I relied on my right for all the steering, breaking, and shifting.
My left leg can’t push or pull the pedal. It’s basically just clipped in, with my ankle braced tight, its sole purpose seems to be adding difficulty and resistance to my right leg. My right carried the load and brought me back safe. I wasn’t worried about the strength of my right leg, it was the incessant pounding and cramping on the left which worried me. Nevertheless, the conditioning of my strong limbs and my stubborn motivation carried me across the finish line.
What a wonderful sight it was to see Eleanor jumping and yelling as she cheered me across, then running to me for a well-deserved victory hug! I was tired and sore, confident I pushed much harder than I should have. There was no other option.
Brie was ready to support. After 3 ½ hours of sitting in my trike and riding, my legs and arms were useless. She unclipped my feet from
the pedals, removed my shoes and ankle brace, and popped on my walking brace. It took Brie plus two other people to help me stand up and hold on while my wobbly legs tried to gain stability. I’ve given up a modesty in humbling situations such as this. There’s no way I can do it alone.
The rest and recovery time was longer than before. My body is suffering from not only the weakness of my failed limbs put the atrophy their immobility leads to. My adrenaline kicked in again and again, mustering up enough to celebrate with my team on Saturday night and to bike the next morning in the ‘I Ride with MS’ victory lap with all my friends fighting along my side. Overall, the weekend was less than I wanted to do yet more than I initially feared I would be able to accomplish.
Even more than crawling into the cockpit of my recumbent trike, the weekend held so much magic and promise. So many friends and loved ones of there to support and fight alongside me. Many are fighting their own MS battle; it’s wonderful to catch up with my brothers and sisters. We compared war stories of our setbacks since last year’s Bike MS; we marveled at the new technology and widgets we had to increase our mobility; we shared stories of new medications and new hopes. The most poignant part of our time was a chance to see how their fight with MS is going. I’m happy to say the progress for so many was positive. We love to share in their success, always happy to talk about how they were much worse in the past, restricted to a wheelchair, and now there gingerly walking around. We even sometimes reminisce about the good ‘ol days, how I rode the 100-mile century option just a few years ago, yet struggle today with my limited potential. We talk about the future (talk about the future a lot). Rarely do we talk about the future where our MS continue to overtake the mobility and functions we cherish. No, all I hear is talk about how we will overcome.
I awoke Monday morning with the grand plan of writing this quick AAR to share with my supporters and begin the next round of recruiting more donors. Although the alarm went off at 5:30, my day was not ready to start. I couldn’t get out of bed, unable to move my left side at all. A weekend of riding and exerting left me with an agonizingly sore, cramped leg. My left hand remained tightly cramped into a ball. My day would not start for a while; instead I laid in bed with a smile on my face.
“You did way too much. It’s going to take some time to recover. This weekend was more than your body could take. Good job, KB! Good job.”
It’s coming back… slowly.
Maybe next year all I will be able to do is half, for a quarter, or a tenth of what I did this year. If it is, I will do that plus a little bit more. I will leave anything on the table. This fight is too important.

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…®
Kevin Byrne
Portland, OR


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



Thursday, August 3, 2017

Fear

2017’s Bike MS is just around the corner. On Friday, we gather down in Monmouth to begin the festivities: reacquainting with old friends & meeting new ones, riding the countryside on Saturday and Sunday, and celebrating our mutual commitment to defeat multiple sclerosis.

This year marks the 15th anniversary riding with the National MS Society. For the first time, I go into the weekend afraid. My body is failing at a rate I find difficult to track.

The Congressionally Directed Medical Research Programs (CDMRP) strive to transform healthcare for Military Service Members and the American public through innovative and impactful research. In support of MS, their vision is “to prevent, cure, reverse, or slow the progression, and lessen the personal and societal impact of multiple sclerosis.” I recently had the pleasure of reaching out to our members of Congress in support of continuing MS research under the CDMRP. This is a cause I wholly support, but what can I do when every aspect of their vision is currently beyond my reach?

Prevent
Cure
Reverse
Slow the progression
Lessen the personal impact
Lessen the societal impact

Fight.
The simple answer is to fight with everything I have, to never stop, and to never quit. I have no other option.
There is no way to lessen or overcome my fear. My limbs won’t work well, or at all, nor can I will them to do so. Fatigue will set in the moment I wake. My eyes will fail, my voice will grow weak. When I strap into my trike, I have no idea how far my legs will push me, if they work at all. I look at the temperature forecast and wonder how much 100+ degree weather will compound my weakened condition. Above all, as I struggle to set aside these doubts and forge ahead, I wonder if this will be the last year my body will have the energy to even begin such an undertaking.

Fears will press hard on my emotions, every minute of every moment. Instead, I need to give myself a reason to fight.

[Inside Voice]:
“Don’t fight to overcome your fear, for your fear will not subside. Never.”
“Don’t fight to show your fear who is stronger. Fear is.”
“Don’t fight to lessen your fear, make it go away, or drown it out. Fear doesn’t care; fear is not fighting you; fear is merely present.”
“Just fight. Fear is there and it’s not going away. Focus on the fight and maybe, just maybe, you’ll win.”

I win my fight if I overcome that which feeds my fear, my MS.

Prevent, Cure, Reverse, Slow the progression are in the hands of science. I need to fight so I can continue to raise money and awareness in support of the research and development of new therapies to prevent, cure, and treat MS. This is why I ride!

Cure, Reverse, Slow the progression are also in my hands. I need to fight so my body has the strength, opportunities, and resources to attack the MS already inside me. My ongoing therapies need revamped support in the name of radical changes to diet and exercise. August 1 = Day 1. This is why I ride!

Lessen the personal and societal impact of multiple sclerosis. The emotional challenges of my MS cripple far worse than the physical. This is a manual focus, every single day. “Remember that, Kevin: this is a manual focus, every single day.” This is why I ride!

I don’t want my story to be left untold.
When we win this fight, I don’t want to say, “I wish I did more to end this sooner.”
If I lose my battle before we win this fight, I don’t want to say, “I wish I did more when I could.”
Instead, I want to say, “Remember when we… Wow, was I scared!”

I am left wondering how many others felt this way when they finally confronted the brutality of their own fight. How many who fell thought they would win? How many who won feared they might fall?
Please support my 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!

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



Friday, June 16, 2017

The Completely Inconsequential Ramblings of a Condemned Man

I wanted to tell a story. As with any story I tell, my ramblings went on far longer than expected. It was a difficult series to document, especially since the stories have not finished writing themselves.
My MS will progress, until…
My stories will become more somber, until…
New people will be diagnosed and sentenced to the same fate, until…
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!

Attached are my stories, which I proudly present to you with only one request: Share These Words. My group of friends and loved ones is limited, but the growth realized by sharing through your network, then their network, then so on, will quickly reach epidemic proportions.

OK, two requests!
Please support our fight through a donation to the National Multiple Sclerosis Society: main.nationalmssociety.org/goto/EMBK.
Everything I do supports this effort, for every chance I may have will come through the research and development organizations like the MS Society are funding.

This is my only chance.
Thank you for your amazing support.

Love,
Kevin

Bike MS: Willamette Valley 2017
Ride Details
Date(s): Friday, August 4 - Sunday, Aug 6, 2017
Start/Finish Location: Western Oregon University


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

Thursday, June 15, 2017

Harsh Realities of the Inconsequential Ramblings of a Condemned Man

* There is nothing on the market today with the ability to cure my multiple sclerosis or send it into remission.
* It is debatable whether or not my current medications are slowing the progression of my MS, giving me an extra year when, before, I only had a month.
* There is no known way to recover function I have lost, or will lose, due to the damaging effects of my MS.
* There is no way to predict, identify, or isolate early-onset MS, and eradicate the disease before it affects the next generation.
Not yet…
Overcoming those realities are my dreams; the only possibilities for realization come in the form of research and development. Your financial support is needed if I am going to win 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 fight!

Please support our fight.
This is my pitch to support our fight and share our message as far as your networks will take it.

I first shared my beloved message of dedication and hope on April 30, 2008. At the time, I had no idea the impact, of those words and my worsening condition, would bring me to where I am today; but, where is that?
Am I on the launchpad or the brink? I hope the answer is the former.
‘Pray for the best, expect the worst, be prepared for both.’

Over the past three weeks, I have shared my soul (or showed my ass) in ways like never before. I wondered if I went too far when Brie reacted to things she never knew about me. If I’m going to ask for support, you need to understand why.
If I’m going to ask others to give what they can, I must demonstrate how I am giving everything I have.
“You have five minutes to win their hearts.
And, GO!”

Here I just a smidgen of examples in my life.

If my MS is going to cripple me, it will have to put up a fight
I spend 2 to 4 hours a day in physical therapy, pushing my body to its limits. Most days, I fall short of what I could do in the past. Yesterday, I showed improvement in my strength and endurance. I hope to match that goal today. Baby steps…
It’s not all bad; I do spend a lot of time on elliptical machines and stationary bikes; that gives me time to binge watch a multitude of TV series. By the end of next week, I will be free to converse with anyone interested in Season 5 of The Arrow! [Line forms here]

I will continue to adapt and overcome
There it more than one way to skin a cat, so to say.
When MS turned my childlike scribbling into completely illegible scratch, I started to type everything. As my ability type on a keyboard diminished, I transitioned to voice-to-text software. Every blog post I “write” and every novel/book I am currently “writing” is, more accurately, “The Spoken Word of KB.” [I expect a lecture from my priest for such blasphemy.]

I will demonstrate my tenacity and conviction in searching for a cure
I’m on approved medication #9 and trial medication #2, part of the continued search for the right combinations. I don’t know when #10 or #3 will arrive.

I will continue to serve my community
…as a member of the Board of Directors of the National MS Society, Oregon Chapter.
…as a Sunday School teacher for St. John the Baptist Episcopal Church.
…as the Treasurer/Director for The West Point Society of Oregon (alumni organization).
…as a team captain for Team Amulet, 2017 Bike MS.
…as a loving father, husband, dog owner, and the K in EMBK!
…as a loving family member, neighbor, and friend.

As needed, I will do more
My effort to drive support led to the founding of NEVER STOP NEVER QUIT, a nonprofit organization solely dedicated to augmenting existing efforts to fight MS.
The mission of NEVER STOP NEVER QUIT is to raise funds, support treatment, and promote awareness in the fight against multiple sclerosis.
Regardless of the fundraising efforts, 100% of the net revenue generated by NEVER STOP NEVER QUIT shall support larger/national organizations, with the specific intent of finding a cure for, and managing the devastating effects of, multiple sclerosis.
There is much more to come with this adventure.

And, I will do more
Be it speaking at national/regional events, publishing books, or selling motivational swag, a mountain of efforts are underway to continue raising awareness and funds in our fight.

I will share my story for the world
Remember, you are not alone.
I have so much more to say, so many more inconsequential ramblings.
* I am trying to figure out where some fit: what is the best way to categorize the effect of worsening edema?
* I don’t have personal experience with others. Unfortunately, I will.
* Others are not mine alone to share alone. We’ll figure out how to get there together.

And when I finally finish every effort I will undertake, when there is nothing left my body or mind can do, I’m confident my small contribution will be a glorious footnote in The Official Journal of the American Academy of Neurology’s featured article, “Finally: The Key to Fighting MS Revealed.”

How was that?
“Four minutes and 50 seconds. Not bad.”
Oh! Then, Never Stop… Never Quit…!

**************************

Bike MS: Willamette Valley 2017
Ride Details
Date(s): Friday, August 4 - Sunday, Aug 6, 2017
Start/Finish Location: Western Oregon University


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…®
Kevin Byrne
Portland, OR

Wednesday, June 14, 2017

Consequences of the Inconsequential Ramblings of a Condemned Man

Complications, side effects, secondary, and tertiary symptoms. Call them what you want, these consequences are the truly crippling effects of multiple sclerosis. My MS is not going to kill me; I can live a long, albeit hindered, life with numbness, pain, bladder problems, spasticity, etc. Multiple sclerosis will not be the direct/primary cause of my death. If all goes to plan, MS will be no factor when I die at the glorious age of 109-years old.
But, and I’m just hypothesizing here, if complications as a result of multiple sclerosis are a cause of my premature demise, here’s my top five list of ‘MS Things That Are Probably Going to Kill Me’.
5 – I will suffocate/choke to death
I should have this down pat, as I choke on food and drink all day, every day. Choking is normally no cause for alarm; I maintain a carefully measured protocol, ensuring my airway is cleared with minimal fuss or mess. It remains, unfortunately, one of my less graceful moves, as I continue to find new ways to scare the hell out of myself at least once or twice a month.
How many times can you play the lottery before you win?
4 – I will die in a fall or have an accident
There are a multitude of scenarios under the general ‘accident’ category. Many of the more likely candidates list under common activities such as driving, cooking, or swimming. I’m currently safe in all areas, or I recognize my limits and keep clear, but I do understand my ability will change more than the ‘normal’ aging man.
I don’t go in water over my head, for my comfort level in the one arm, one leg dog paddle is minimal.
Brie, can I use this is my excuse for wanting to eat out all the time instead of cooking?
I’m a good driver, a safe driver, safer now than ever before. Nevertheless, I watch and evaluate this one constantly…
Falling should be a category of its own, separate from other accidents. While I’m cautious, I still fall regularly. This past winter, I cracked ribs when I fell getting out of the shower, then again shoveling ice and snow. Just a few years back, I suffered a dual-spiral fracture while roller skating (don’t ask, it sounded like a good idea at the time); I have the titanium rod in my leg as a permanent reminder. I still push myself, for it is worth the risk to avoid becoming immobile/sedentary. I still go beyond my limits regularly, for I don't know where the moving bar is, nor is my brain ready to accept some limitations. Today, I fall often, with minimal permanent consequence. All could change at any moment. Hopefully, I will recognize this before I regret it.
3 – I will die from an infection
Medications come complete with a variety of infection potentials. In 2007, I nearly lost my leg, or worse, due to the reaction that developed into a staph infection. Aspiration pneumonia is a constant concern, caused by the food and drink so often going into my lungs. Cuts and scrapes are common; often I don’t see and cannot feel them to properly care for the wounds.
2 – I will die from a medication reaction
Reactions and side effects are plentiful, some are critical while others are just annoying.
Biotin, or Vitamin B7, is a supplement normally taken to promote healthy hair and nail growth, as well as other common afflictions related to a deficiency in the vitamin. Normally, it’s taken in daily doses of 20 to 45 micrograms (mcg). There’s preliminary evidence, and a current phase 3 trial is underway, to support benefits with the use of high-dose biotin in the treatment of multiple sclerosis. I’m currently taking 300 milligrams (mg) daily, the equivalent of 300,000 mcg! As you can imagine, my hair and nails grow at a phenomenal rate.
Some of my medications cause nausea (take with food, take on an empty stomach).
Many of my injectable medications over the years have caused bruising and other site reactions.
I would love to know what the heck I am taking to give me such incredible/offensive gas!
Then there the bad reactions I’ve experienced: bacterial infections, staph infections, gastrointestinal reactions, anaphylaxis, meningitis.
I am on an immunosuppressant, which reduces my body’s immune system, I get it. Medications are one area where the Army Strong mentality of, “give me what you got, I can take it!” does not apply. I can’t take it, so please give me only as much as I need.
1 - I will kill myself
This is a hard phrase to imagine, even harder to write. I honestly have no idea how far down the rabbit hole I went on my other trips, nor do I care to find the answer. I don’t want this to happen, and am shaken to the core merely discussing the topic of my suicide.
Suicide is a reality for everyone. For those at increased risk, whatever the reason may be, it will always be a danger, one which will not go away and must be acknowledged, confronted, and respected if it is going to remain suppressed.
If you are in need, if you are scared, reach out.
You are not alone.

**************************

The National MS Society is Here to Help
NEED MORE INFORMATION?
We Are Here
Our MS Navigators help identify solutions and provide access to the resources you are looking for. Call 1-800-344-4867 or contact us online.

NEWLY DIAGNOSED
If you or someone close to you has recently been diagnosed, access our MS information and resources.


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…®
Kevin Byrne
Portland, OR

Tuesday, June 13, 2017

Emotion, Depression, and Other Inconsequential Ramblings of a Condemned Man

Finally, there is a topic in which I have zero concern! Yep, no problems here.
Thank you for reading.

Since you are still waiting, I assume you already know me and await my caveat, or you’re merely anticipating juicy bombshells. OK, here’s one:
* On several occasions, I completely lost the ability to manage and control the emotional effects of my MS. My condition has led to withdrawal, mood swings, irreparable damage to relationships, depression, and thoughts of suicide.
“Why would you admit such a thing?”
Good question [gold star for you]. There are so many reasons to come clean about my emotional fallibility.
First, if you know me already, I’m probably not dropping any bombshell. Perhaps you recognize my predicament and feel sympathy for me. Maybe you just think I’m an asshole. I would like the opportunity to change your perception.
If I constantly remind myself this condition exists, my awareness may be the tipping point to staves off catastrophic results in my next encounter.
And third, if I share my story enough, hopefully, someone out there will understand they are not alone in their fight. Because you are not alone.
I have spanned an infinite loop of emotional changes countless times over. I fully expect to revisit everyone throughout my long and prosperous future. The 5 Stages of Grief & Loss do not have one pass through, but as many as you can handle. I haven’t shared many of these before, but, since we’ve become so close, I figure I can confide in you.
My first struggle lasted more than four years.

Denial
The shock of my initial diagnosis was softened by the fact that I could continue to do my job in the Army. For some reason, unbeknownst to me, my commanders approved my request to remain in command of my Air Cavalry Troop in Korea. It was the greatest act of trust, faith, and confidence for me, a non-deployable soldier, to remain deployed overseas in command of troops. I worked to minimize the effects of my disability by charging full speed into my work and alcohol. Nine months later, I chalked up my return to the States as ‘their greatest mistake’. For my new life in the civilian world, work and alcohol remained always by my side.
Peppered throughout this stage were manic highs and lows, as I struggled to find a better life.
Anger
3 ½ years after diagnosis, which included seven moves, across three states and three continents, I crashed (literally) out of the first stage. In my wake, I left a lot of shattered relationships and despair. I grew angry with my MS for all it had taken from me.
Silliest reasons of all was war. I was angry my MS stole my life in the military before 9/11. I’m ashamed to admit I marginalized the suffering and sacrifice of so many by referring to it as something I missed out on. This was 2002 and 2003; I had yet to realize some of the amazing accomplishments I proudly boast of today; had I an ounce of foresight, my bar tabs would have been much, much lower.
Peppered throughout this stage were manic highs and lows, as I struggled to find a better life.
Bargaining
It was around this time when I drafted my first suicide note. I created a logical list of reasons why life is unbearable and unfair; on the opposite side, I crafted my fears, my hopes, my dreams. Multiple sclerosis and suicide peppered every thought. I would give anything, do anything, to figure how I can move forward past this state. I ran to the only place I could think of: to my mommy, my sister, and my brother. I was willing to give up everything, though I truly had nothing, if I could find an answer.
So, my sister took me in as I gave up everything; I stopped struggling through manic highs.
Depression
For seven months, I struggled through trying to rebuild the life and once had before multiple sclerosis, only to realize it was neither the life I wanted nor a life I was capable of achieving. Career searches, neurology appointments, psychological counseling, they all kept me just slightly on the correct side of sanity.
Acceptance
“If I just get a job, I can get back to my feet.”
“If I just get a girlfriend, I can get back on my feet.”
“If I can just get back to my feet…”
I finally stop searching for my fix, finding solace in where I was and what I had to offer. Volunteering at the VA hospital, I learned about true suffering… true sacrifice… true service. Only then, did I want to only build upon where I was in life/as a person, regardless of why I got there, and not where I should be.
I used to feel gratitude for the fact I went through the stages before I met Brie, before Eleanor was born. That round was merely the first, the most pronounced. I have struggled through so many rounds of Denial – Anger – Bargaining – Depression – Acceptance:
* Every hospitalization, every setback with my multiple sclerosis.
* The approach of my 43 years, 79 days birth date (the age my father was when he killed himself).
* The process through my disability classification of ‘100 % Total and Permanent’.
* The death and disability of friends, family, and loved ones, and the realization I don’t feel far behind.


There will be so many more stages to face, as there is much grief yet to come. In between this, there is an endless string of emotional windfalls and emotional challenges.
I accept that challenge.
[Challenge Accepted!]
And, I raise you one bit of sarcasm, courtesy of Eleanor.
[What do you call a puppy on a bicycle?
            A puppy bicycle!]

Exactly.

**************************

Emotional Changes
Can be a reaction to the stresses of living with MS as well as the result of neurologic and immune changes. Significant depression, mood swings, irritability, and episodes of uncontrollable laughing and crying pose significant challenges for people with MS and their families.
Depression
Studies have suggested that clinical depression — the severest form of depression — is among the most common symptoms of MS. It is more common among people with MS than it is in the general population or in persons with many other chronic, disabling conditions.


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…®
Kevin Byrne
Portland, OR

Monday, June 12, 2017

Fatigue, and Other Inconsequential Ramblings of a Condemned Man

Regarding fatigue, there has been a cycle in my life.
- When I was a baby: just fall asleep, wherever, whenever.
- When I was a child: just take a nap.
- When I grew older: just go to bed early.
- When I was in the Army: Suck It Up, Cupcake!
- After my Army days: just don’t go out tonight, go to bed early.
- When Eleanor was born: just take a nap.
I long for the days when I will be able to fall asleep, wherever, whenever. For now, I am in a constant state of limbo caused by my multiple sclerosis: Fatigue.
When does fatigue set in? When does it replace other words?
Tiredness?
Weariness?
Weakness?
Lethargy?
Laziness?
This is not only a battle with my multiple sclerosis, but it is also a struggle with every perception I face, with myself and others. Many symptoms have their telltale signs: a limp, my struggle with a fork, slurring and staggering, even my oddball forgetfulness, there are usually signs or indicators how ‘something is not quite right’ with KB.
My fatigue is something different. I may be groggy and lethargic, as if I have been up for the last 47 hours straight. Chances are, however, that is not the case. More likely, it seems as if I have plenty of energy, but I just don’t want to do anything except sit there and watch TV, drink a beer with my friends, or stare at the computer.
Is it physical? Mental? Emotional?
Yes. Yes. Yes.
Fatigue is the loss or degradation of energy, physical, mental, and emotional. I track so many points of data in my day, I’ve developed the ability to forecast fatigue:
- When I don’t get enough sleep (less than six hours of sleep, two or more days in a row).
- When I get too much sleep (greater than eight hours of sleep).
- When I don’t have enough sugar my diet/too much sugar in my diet.
- When it’s too hot/too cold.
- When I exercise too hard or too long/don’t get enough exercise.
- When I follow my regimen for too many days in a row/I have too much flux in my schedule.
-When I push myself too hard/don’t have enough activity in my day.
Then, there are those days where everything is perfect. My sleep, diet, exercise perfectly blend24 with the weather, and with all the outside demands of life. On those rare, jewel-like moments, it’s a 50-50 crapshoot as to whether I’m going to have energy or not.
I’ve never been middle-aged before. Maybe some of it has to do with my 45-year-old frame… I don’t know.
When Brie and I moved to Oregon, I fell in love with hiking and climbing. Nothing compared to the feeling of pushing my body up and down steep trails for hours, in peaceful solitude, with only my thoughts and music to comfort as I pushed my body harder. The first few hikes absolutely kicked my ass within 45 minutes. I thought it was just this Bronx-born body rejecting nature until a friend of mine recommended getting a set of trekking poles. Something simple like taking that added struggle of balance away made all the difference in my energy level. My speed increased 3x over while endurance seemed limitless.
With my MS, the added struggles of balance, strength, memory, coordination, etc. take their toll on what I can do. As my activity decreases, so does my ability to push the next day. It’s a cycle that feeds on itself…
Here’s about all I can commit to you. I will never use my fatigue as an excuse to avoid something. I will proudly proclaim any reason I am not participating: I don’t like it, I don’t like you, I have something better to do, I think it is stupid, I don’t like (fill in the blank).
If, instead, I just avoid participation with no excuse offered, my wants or likes are irrelevant.
I can’t. For the moment, I just cannot do anything. I promise, though, when I can, I will.
Unless I really don’t like you (in which case I will tell you).

But for now, I’m off to the gym. My body is like it has some energy for physical therapy. I hope it lasts the drive there…

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Fatigue
Occurs in about 80% of people, can significantly interfere with the ability to function at home and work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations.


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…®
Kevin Byrne
Portland, OR