Tag: #msfatigue

October 2019

I’ve Become a Little Sew and Sew Thanks to Information Overload

by amysaxons3 Comments on I’ve Become a Little Sew and Sew Thanks to Information Overload

Hello Friends, happy October to you!

It’s been three weeks since I finished my Ocrevus infusions and, thankfully, I have returned to my normal MS baseline. I’ve had quite a few people ask me if I have noticed my MS “getting better yet”. Sadly, the answer is no. There aren’t any cures for MS and there is nothing to take away the damage that has already been done. The purpose of Ocrevus, and all the other disease modifying drugs, is to try to stop any further damage from occurring. There are many researchers working hard to try to figure out how to not only stop MS from progressing, but also how to repair damage to the nervous system in order to reverse the debilitating symptoms of the disease. This is a pretty good segue into the information overload mentioned in the title.

Perhaps you are like me and have had to take breaks from social media and the constant barrage of local and international news for the sake of maintaining your own sanity. Well, about a year ago I signed up to a couple of daily MS research news outlets. They arrive in my inbox each morning and present several summaries and links from around the world to everything ranging from research proposals to current studies in mice (poor little mice, they’ve born the brunt of forward thinking MS flops and successes), comparisons of a current MS drug against a possible new drug, clinical trials in all manner of stages, forums about MS, and even articles by fellow MSers about how they live and cope with the disease.

I typically do like to be on top of all the latest MS information, but here lately I’ve been feeling like it’s all too ivory tower. Down here in the trenches, at least in my trench, it’s muddy and wormy with the walls always caving in and needing constant repair. I’m covered in the dank, earthy stench that never leaves my nostrils, even when I dare to raise my head in an effort to try to go over the top, despite having trench-foot. To top it all off, a hail of bullets marked MS come flying over my head intermittently keeping me in a state of constant vigilance and exhaustion.

So, at least for now, I’m going to lie low down here in my mucky but familiar trench and try not to worry about what the people in the ivory towers conjure up for the next move. I’m not giving up on it and I’m glad someone is in the ivory tower, I just need a break from it all for a while.

To that end, about a month ago, I dusted off my sewing machine, turned the music up, and started stitching away! My Mom was a wonderful seamstress and even owned a fabric store when I was young. She showed me how to sew but it didn’t come as easily to me as it did for her. I took a sewing class in high school and had a few lessons through 4-H, too. I’ve sewn a few things through the years as an adult but never really thought of it as something I could get into as a regular hobby. That is until now. I am thoroughly enjoying myself and looking forward to each new day to get stuck in to some new project! The first one was this little sewing catch-all.

I used the leftover material from the catch-all to make some cute bowl huggers for the microwave.

While it is true that some days I am too tired to sew at all and other days I have to take breaks after just a little bit of sewing exertion, just being in my little sewing space brings me joy. For example, looking at all this thread…

…and ALL this fabric with cats ❤️ brings me inspiration for new projects to try when I eventually do have energy!!

I finished up a couple of these boxes yesterday so I would have a better way to see and store my fabric.

I’ve made several things for others, too, which has given me joy and purpose. Fair warning: If you get a Christmas gift from me this year it’s probably going to be homemade. But don’t worry, not all the fabrics I’ve been stashing away have cats on them 😉.

Signing out from the trenches and hoping you’re upwind from me!

Amy

September 2019

Bike 150, Jammies, and OJ #2

by amysaxonsLeave a Comment on Bike 150, Jammies, and OJ #2

Hello Friends!

It’s time for my next heapin’ helpin’ of Ocrevus! I’m writing this at the hospital while the Ocrevus Juice (“OJ”) is going in.

Thursday, August 29, 2019 was the big day for my first infusion. I was excited to get the OJ going…
… and today I keep thinking that I am willing allowing this whole business to happen to me at a cost of $17,000 per infusion.

My life has been a pretty low key affair since I posted last. As far as the OJ is concerned, I felt decent and it seemed I even had a bit more energy than usual for the first couple of days, despite a light, chronic headache. Naturally, the penny eventually dropped and on the third day a monstrously oppressive fatigue settled in. It felt like I was trying to balance a bowling ball on my neck instead of my head. My legs were concrete pillars and my feet were made of iron. This tyranny lasted for five days before finally releasing me to a much kinder, though still pretty strict, general tiredness. I wonder how it will play out this time. I’m hoping it demands rocky road ice cream 😉.

Todd and I did have one HUGE outing this past Saturday.  He rode in the MS Bike 150 in my honor 🥰. I was so proud of him. It was brutally hot that day but he pushed on and completed 102 miles! As I’ve mentioned before in previous blogs, I don’t drive much anymore because it makes me tired. So, it was a ginormous effort for me to drive 80 miles to the finish line to pick him up. Both of us gave it all we had in the name of fighting this crazy disease. I ended up paying for the effort for a couple of days. On the upside, I spent two days in my jammies snuggling with our cats whilst alternatively watching TV and reading.

My hero closing in on the finish line.
Sweating it out in order to cheer my Todd the last 100 feet. If you squint you can see the orange finish line behind me.
Time spent with cats is never wasted.
~ Sigmund Freud

I have no idea when I will feel lucid enough to write another post. But I do sincerely thank you for joining me as I meander through the wilderness that is MS.

May God be with you.

July 2019

When Music Sounds, Gone Is the Earth I know

by amysaxons1 Comment on When Music Sounds, Gone Is the Earth I know

Without a job the days tend to blend together.  I no longer feel a tinge of sadness that another Monday has rolled around or the excitement of the work-a-day world that it’s finally Friday again.  But, for some strange reason, I definitely struggled through Monday this week.  Was it because hubby had to go back to work after a lovely four day weekend together?  I feel so much more freedom when he is home because it is the only time I really get out of the house these days.  I don’t know, but I definitely had acute symptoms of Monday-itis.  

Oh, before I forget, I should take a step back for a second.  Remember that post a couple of weeks ago about me riding my bicycle and all that bravado of determination to stick it to MS and just ride anyway?  Yep, that one. Well…that sent my MS rolling on the floor in screams of laughter and hilarity. It could hardly catch it’s breath long enough to snidely retort, “That’s a good one, Amy!” 🤣 😂

I have gotten on my bike four or five times since but I’ve come to the conclusion that a seven minute ride just isn’t worth five hours of drooling on the couch in utter debility.

So now, back to the story of Monday.  I got up early to ride my bike and, to be fair, got along better than usual.  I rode for 17 minutes and only had to rest for 45 minutes before being able to take a shower and brush my teeth.  The fatigue settled in heavily thereafter, though, and was thick and heavy for the rest of the day. I was bored and my mind was clear enough that I wanted to be doing something.  On three separate occasions, I tried to come up with something to write about. Nothing but a blank screen stared back at me. Honestly, after the first minute or two of nothingness, the screen wasn’t strictly blank, it looked a lot more like Spider Solitaire.  I decided I was wasting too many brain cells doing such a mindless activity and was determined to do something productive. I emptied the dishwasher and swapped wasting brain cells for wasting energy I did not have. I then decided to work a little on a sewing project I had begun a few weeks ago.  Who knew sewing took so much energy?? URG! 

I tried reading.  I love to read and take great delight in doing so nearly every day.  Why didn’t I feel like reading? Hey, Monday, cut me some slack! I tried watching TV but I couldn’t find anything that interested me.  I finished a puzzle I had started the day before but it only took about 15 minutes. I tried to watch the birds but apparently they all colluded with Monday and went to someone else’s feeders.

Having exhausted all the usual pursuits that keep me busy when I find myself forced to sit all day, a sudden stroke of genius popped into my mind.  Music! I will listen to some music!! 

I have a fairly eclectic taste in music.  My music library is a hodge-podge of various decades of rock, punk, swing, big band, blues, jazz, folk, bluegrass, Christian…pretty much anything that isn’t country or rap.  I’ve been listening a lot to rock, blues, and Christian the last few months but these did not fit the bill on Monday.  

If I was ever sick during the school week while growing up, my parents would drop me off at my Grandma Lois’ house and she would take care of me until they were done with work.  Grandma always had her radio tuned to KTXR 101.3, which was known back then as “The Gentle Giant”. They played a kooky mix of soft rock and various kinds of instrumental music. We never listened to KTXR at our house or in the car but I loved listening to it at Grandma’s house.  Like all kids who grew up in the 70s and early 80s, I watched my fair share of The Lawrence Welk Show. Although I wasn’t ever really interested in listening to any of the lounge act singers, I was a huge fan of the orchestra, especially when they played by themselves. Somehow these two weirdly-paired entities of my childhood faintly illuminated the beginnings of a serious passion for a genre of music I wouldn’t have much exposure to until college.  During 1989, while attending university, I discovered the local National Public Radio station in town. They played classical music several hours during the day back then and I suddenly felt like I had discovered the songs of angels. No other genre of music has ever come close to the joy and delight I have found through classical music.  

I guess like all things in life, you go through phases of binging on one thing to the exclusion of all others until something brings you back to the center of some old passion and you relive the fundamental elements that drew you to it in the beginning.  

And so around 1:15 in the afternoon all the “-itis” of my Monday disappeared.  My heart soared upward, untethered from my languid body, until I no longer knew if I was part of this world or had joined the mirthful realm of the next.  I cried listening to Chopin’s Raindrop Prelude and Etude Op. 25 – No. 1 because of their limpid, beautiful timbres. Brahms’ waltzes, especially my favorite, No 15 in A Major, Op. 39, felt like liquid love washing away all the dullness of the day. Beethoven, Mozart, Bach, Massenet, Debussy, Vivaldi, Schumann, Elgar, Ravel…one after the other until I was too blissed out to care that I was under the thumb of MS that day.

Music, when applied to just the right heart at just the right time, is the strongest balm one can apply to weary souls. 

Music
When music sounds, gone is the earth I know,
And all of her lovely things even lovelier grow;
Her flowers in vision flame, her forest trees
Life burdened branches, stilled with ecstasies.

When music sounds, out of the water rise
Naiads whose beauty dims my waking eyes,
Rapt in strange dreams burns each enchanted face
With solemn echoing stirs their dwelling-place.

When music sounds, all that I was I am
Ere to this haunt of brooding dust I came;
And from Time's woods break into distant song
The swift-winged hours, as I hasten along.
  ~ Waltar De La Mare

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!

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.

April 2019 Posts

Shopping at Full Speed

by amysaxonsLeave a Comment on Shopping at Full Speed

Its bright red concentric circles beckon to land me squarely in the store. The aroma of freshly made popcorn and your choice of hot or cold, legally addictive, caffeinated beverages magically combine to infuse the air and make you feel like you want to stay a while.  It provides ample opportunities to people watch a slightly trendier, but still as strange, menagerie of folks than it’s yellow-sparked logo competitor. At any given time, it probably has more tattoo and pierced skin shoppers with hipster haircuts than any other place in town.  Home goods, furniture, clothes, undergarments, electronics, books, toys and games, food, candy, lotions and potions, a pharmacy, cleaning products, pet supplies, seasonal decor, greeting cards…pretty much everything a first world, middle class, 21st century human needs to function in our consumerist society.

I used to be able to drive myself to this shopping mecca and make my way through any aisle I chose at a leisurely pace.  When my cart was full and I had breathed in all the buttery-laced air I wanted, I could stand around in the check-out lane with no worry of how long it would take to pay, walk back to my car, and put all the bags in the backseat before finally driving home.  I could also bring the bags into the house, empty the contents, and, one by one, put them away into their respective places without care for how much energy I expended.

That was then and this is now.

It’s been well over three years since I dared to make this excursion on my own.  Like so many other things when living with MS, doing activities on my own didn’t abruptly stop.  My independence diminished similar to how individual flurries accumulate in a gently falling, long, slowly moving snowstorm.  Flake by tiny flake they collected until one day I found myself buried under the avalanche of symptoms, and shopping on my own became yet another task that fell into the “insurmountable” category.

Nowadays, my hubby chauffeurs me into town and parks in one of the handicap spots conveniently located close to the door.  He drags my wheelchair out of the trunk and together we spin our way through the store. I hate riding in those motorized wheelchairs with a basket on the front that beep every time you need to turn around or want to see something behind you.  Instead, I’ve learned the art of balancing two handbaskets on my lap, fitting everything we need into them for the week. More difficult still has been learning to compromise and change our individually-preferred shopping styles in order to make our weekly Target run pleasant for both of us.  I’ve (mostly) given up my insistence that he push me at a leisurely pace through each isle of my favorite sections. In turn, he has (mostly) stopped whizzing me so quickly that we leave two-wheeled skid marks on the tile. Sometimes we settle on him leaving me in one aisle near something I want to look at while he flies through two or three other aisles.  

This approach has fairly easily carried over to other shopping venues like the grocery store and DIY stores.  Someday I hope it will overflow into shopping for clothes at department stores, but I’m not holding my breath.  I have to admit that watching someone else shop for clothes has a limited entertainment value. However, it is kind of fun to ride through the rest of the mall so fast that you can’t tell if the blue-haired people you pass are teenagers or grandmas!

April 2019 Posts

Freedom, My Old Friend!

by amysaxonsLeave a Comment on Freedom, My Old Friend!

Crushed on the couch because I got dressed. My legs are telephone poles, it’s going to take a Mack-Truck to move them. Each arm is a 500 lb bar-bell. The remote is just a couple inches away. My brain keeps saying “reach out and get it” but nothing happens. I can’t sit up, I can’t even raise my head. It takes all my energy to blink my eyes. My mouth is open, too slack to close and it takes all my concentration to muster enough energy to swallow. One hour down, now three. I can hear. I can see. I know I am breathing. I can’t feed myself, maybe in the next hour. My chin itches but I don’t care, I’m too tired to scratch it. It’s four hours now. I think I can move my hands. Yes, but my fingers aren’t strong enough to push the buttons on the remote. Maybe 30 more minutes will do the trick. It was all noise before but now I can make out the words from the music playing on TV. I like this song, I don’t need to change the channel. Todd pulls me up so I can sit. Easy does it. Just enough energy to feed myself. The drink is too heavy to lift, but I can sip through a straw. I have to lie back down to rest. Two more hours pass but at least I can follow the plot of the show Todd’s watching.

MS Fatigue is not the same as being tired. You are tired when you expend a lot of energy, like overworking in the garden, or when you don’t get enough sleep, such as pulling an all-night study session before a test. MS Fatigue has nothing to do with sleep or overwork, it is present no matter what, and it is so oppressive no amount of will-power or positive thinking exerts any difference over it. It takes you and holds you prisoner in a nearly unresponsive stupor, virtually catatonic. Sometimes the excessive, paralyzing, worst form of fatigue enters and exits daily. Other times, it comes and goes like a distant relative you only see on holidays or special occasions. I hate it. I don’t have the vocabulary to explain it. I dread every time it visits. It doesn’t wait for invitations, it just shows up and demands an audience. I’ve been under it’s stern, cruel rod of chastisement more times than I can count. It doesn’t get any easier, BUT I know it won’t last forever. It will eventually ease and, though it may seem reluctant at first, let go of it’s vise-gripping, soul sucking, strangle of me and let me breath the air of freedom again.

(Inhale) Freedom, (exhale) my old friend!