Tag: #multiplesclerosis

July 2019

The Game is Afoot!

by amysaxons2 Comments on The Game is Afoot!

Two Saturdays ago I rode my bike out of our neighborhood and into one a few blocks away. As I was leaving that neighborhood, the all too familiar onset of instantaneous fatigue hit. I had ridden for 17 minutes but was still a good ten minutes away from home and had no choice but to keep pushing until I made it back. I have been paying for it ever since.

Oh, how I’ve battled fatigue these last many days! Nevertheless, I decided last night I’d test the waters by taking a short ride this morning. I got up early to avoid the heat and, for the first time in 2 weeks, rode up and down our street for almost seven minutes. The hardest part was when I was done. Walking back to the door from the far side of the garage where I parked my bike then up two steps into the house felt like I was conquering Everest. I had to sit and rest before taking a shower and getting dressed. I had to sit again, this time for two hours, before I mustered enough energy to brush my teeth. I’m beat! The fatigue is absolutely oppressive and utterly obstinate. I will rest and sit for the rest of the day, but I am determined to get up and ride again tomorrow. I don’t care if it’s just for a few minutes. I have to have some say in how I live with this and spend my limited energy. The old saying, “I might have MS, but it doesn’t have me” isn’t always true physically but it has to be mentally. Living with any disability eventually becomes a mind game. The ball has been thrown not only into my court, but straight at my head! I have to catch it, manage to throw it back, and get ready for the next shot that will inevitably come whizzing back in short order. The game is afoot!

May 2019

I Want To Ride My Bicycle, I Want To Ride My Bike

by amysaxonsLeave a Comment on I Want To Ride My Bicycle, I Want To Ride My Bike

I have had several “good days” in a row over the past few weeks!  They may not have been anyone else’s definition of a “good” day, but to me they were. I have always tried to exercise in some shape or form each day for the past 26 years. For many years now I have been confined mostly to walking around the house for as long as possible before having to sit and rest.  Once I have recovered, I walk around again, rest, and so on. My hubby is an avid cyclist and I have at various times tried to ride with him. I start out doing okay, but inevitably wear out in spectacular fashion because I refuse to listen to my body when it starts to get tired.  As a result of my own stupidity, I end up having to stop riding for weeks or months.


In fact, the last time I dared to ride a couple of years ago, I became so utterly undone by the endeavor it took three solid months to come back to a baseline similar to the one I had previously.  After that, I promised never to do that to myself again and put my bike away in the deepest, darkest, corner of the garage. Like someone lost in a foreign country and unable to speak the language, I just couldn’t understand that I could do more over time by slowing down or stopping before inevitably self-imploding.
I follow several MS related research websites and have recently noticed an uptick of studies related to exercise and its effect upon disease progression, regardless of which type the participants had. Of course, exercise doesn’t stop MS progression and disability, but it does have a positive impact.  People who exercised to their fullest potential, even if wheelchair bound, retained more physical skills for a significantly longer period of time than cohorts who didn’t exercise on a regular basis. That got me thinking again about riding my bike.


I’ve certainly noticed a decline in my overall stamina, coordination, and balance for several months, despite my regular efforts to walk around the house.  I’ve also heard myself repeatedly telling my husband how jealous I am of him being able to ride. I got to thinking maybe I should push myself to try cycling again. So, with a healthy dose of trepidation, I put my courage to the sticking place, and pulled my cobweb covered bike out of its long confinement, put some air in the tires, and set off on a short ride.  I managed to get around our block five times in ten minutes before feeling the tug of tiredness. Yay for me!


Feeling encouraged, over the course of the last few weeks I’ve managed to slowly build up some stamina and increase the range I ride. I’d forgotten how delicious it is to feel the breeze on my face, to smell hay and wild honeysuckle in the air, and to hear the choir of various birds singing and chirping from electric lines and treetops. I’d also forgotten how it feels to get my heart rate up, feel the burn of long unused muscles, and enjoy the rush of endorphins when finally finished.


There have been days when I’ve only been able to ride for a few minutes. For example, my ride this morning was abbreviated because fatigue set in pretty quickly.  I had a feeling I wouldn’t make it long since my legs were already heavy and slow to respond to the demands of walking. However, two days ago, I was actually able to ride for 37 minutes!  Perhaps you saw or heard about Kayla Montgomery in the news a few years ago. Kayla’s a young track star who runs races despite the fact MS has left her unable to feel her legs. When the race is over, she collapses into her coach’s arms unable to get up or walk for several minutes or hours.  Well, that’s pretty close to how I am after each ride. It requires a lot of resting before moving on with my day and attempting to conquer other tasks like cooking or folding laundry. I’m trying not to be afraid of what will happen in the future with my MS. I’m going to do my best from day to day trying to obey the constantly fluctuating whims and fancies this dumb disease dictates because I want to be able to continue to enjoy the ride for as long as possible.

May 2019

Survey Says…

by amysaxons1 Comment on Survey Says…

I hate to brag but I’m a pretty important person. No, seriously.  And you should be a little worried. Here’s the lowdown.

Around late February of this year, after my reluctant but necessary full retirement owing to MS, I decided I was going to need something to do at home to keep me from going completely doolally.  If you’re reading this then, for better or worse, you know the fruit of one of my endeavors – blogging. As much as I’d like to say I’ve thrown myself into writing and have become seriously self-disciplined, the mood actually only strikes once in a while.  On a cheerier note, I’m probably not far from being a serious, internationally-ranked Spider Solitaire contender.

Obviously, I needed more.  Something important that would better humanity.  An avenue that would leave a lasting, positive imprint on the lives of others.  So, I joined Survey Junkie.

Every day my opinions shape your world.  I answer for the masses about real-world, important things, like what we really want from our toilet paper; the best logo for an underwear brand that captures the qualities of “durability and comfort”, the “two things we all want” from our undies; and have carefully chosen between proposed TV commercials to guarantee that the ad fairly represents the company’s commitment to keeping you “safe” while also making you look “prosperous”.

Some survey questions have been easy and fun, for example: Do you use slang?  Fo’ sho’ At what age do you think it is no longer appropriate to you use slang? 89, ‘cause my Grandpa always said he was one cool cat who wasn’t afraid to get on the horn to coppers when he saw someone on the hooch who needed to go to the big house. Did you now that most people think anyone over the age of 26 should not use slang?  Dude, that’s heavy.

Some questions have taught me that OCD has a functional side. Which restaurants have you or anyone in your household visited at least once in the last 12 months? One moment, let me just whip out my Alphabetized, Annotated, and Ranked by 5-Star Rating System of Restaurants Visited Between May 2018 – May 2019 list.

Some questions have been grouped into blocks and straddle between a screening test for Dementia and a social awareness questionnaire. Have you purchased potato chips within the last three months? Are you judging me? What brand(s) of potato chips have you heard of? What brand(s) haven’t I heard of?! Is it important to you that the company who made the potato chips contributes to better their community?  You mean frying potatoes and/or corn into thin, tasty wafers doesn’t count as bettering the community?Would you consider changing the brand of potato chips you normally purchase if you knew a different company made more of a commitment to reducing their carbon footprint than your current chip company? What?  I can’t hear you over the crunch of my Fritos.

Today I took an eight minute survey that was top secret.  I had to agree that I would not reveal the name or contents of the survey among my friends or family, nor would I share anything about it on social media platforms.  See, I told you I was important. I’m doing classified work.

Not only is my opinion important, but valuable too.  In the last two months I’ve earned $22 and counting. The word is out that my opinions are great because I get between 10-15 offers a day to participate in a new survey.  I guess you could even say I’ve become a professional at my new gig.

I’ve always known MS had a few perks, like getting to park in handicap spaces and sitting in reserved areas for my wheelchair at stadiums.  I didn’t know that the virtually home-bound state it has left me in would one day lead me to this new and exciting career in the world of surveys.  It just goes to show that every cloud really does have a silver lining. Oh, I gotta go, someone needs my opinion about which font on the wrapper of mini candy bars properly conveys the rich, creamy chocolate within!

April 2019 Posts

Guilty as Charged

by amysaxons1 Comment on Guilty as Charged

I tend to be a rule follower and a planner.  I obey authority figures. I respect laws. I’m the annoying person who reads all the directions, twice.  I look at maps before heading somewhere new. I lay out my clothes the night before and meal plan at least three days ahead.  In other words, negative consequences are generally a sufficient deterrent to keep me on the straight and narrow. Well… almost always.

Sometimes a person has an obligation to disobey, and in a calculated, planned coup, rage against an authoritarian, oppressive regime, even if the result is certain defeat.

In this spirit, I make the following confession: I, Amy Renee, did purposely, and with a full understanding of the probable outcome, defiantly spend 15 minutes weeding the landscape in the front yard on the afternoon of April 27, in the year of our Lord, 2019.

Statement of Reason: The landscape was rife with nefarious weeds that had invaded upon my property.  On the date in question, the sun was shining and the sky was a beautiful, clear blue which did beckon me forthwith to act upon the foreign invaders.

Defendant’s Previous History: The defendant has a long history, dating back 29 years, of rebellion against the established rule of law, specifically related to over exertion.

Sentence: As the indicted has, of her own admission, willfully and knowingly acted against the long-standing, acting, dictatorial powers of Multiple Sclerosis, she shall be sentenced to between three days to two weeks of excessive fatigue, difficulty walking independently, embarrassing clumsiness, and intermittent loss of bladder control.

The court would like to ask the defendant how long it will take her to learn her lesson. “Probably forever, your honor.” It certainly seems so. Court dismissed.