Changing Seasons

A chill in the air, pumpkins, bales of hay, colorful leaves, small town festivals and fairs, costumes and candy, long sleeves, and warm bowls of chili.  Autumn is my favorite season and I am not alone. More poems have been written extolling Autumn’s winsome ways than any other season. One of my favorite childhood memories is playing with my younger sister for hours in the leaves.  I would rake “roads” out of the leaves in the backyard and she would “drive” her Tonka Truck through them all with Ken and Barbie dressed up in their warmest outfits in the driver and passenger seats.  

It wasn’t until I was older that I understood how the changing seasons reflect the stages of our lives.  I am now in the early autumn of my life as the big 50 lies in wait to spring upon me in six months time. I miss the never ending energy and gusto of the spring of my youth.  I fondly remember the excitement and first-time experiences of living through the summer season, too. All the “adult” things like the first job in my chosen profession, buying my first house and my first car, being entirely responsible for budgeting my first paycheck…and so on were exciting times.  During the first two seasons of life the sun hardly ever seemed to set and youth had enough vitality to live the long days to their fullest measure.

Now, in the early autumn of my life, my energy wanes like the shortening days, with fewer productive hours to get things done.  There are not nearly as many firsts to experience, either. However, what has been lost from the previous seasons has been made up for in privileges only afforded to those blessed with long years.  I have lived long enough to have naturally accrued some wisdom along the way.  

I’ve learned how to tell the difference between what is important and what is not, and the truth from a lie.  People are more important than things. I can look back and see how God has led me through the fires and floods to safer, higher ground.  And I have learned having fun is different than living a life of joy, the latter being so much more important and meaningful. Chasing after experiences does not equate experiencing life to the fullest.  The fullest life is one that surrenders self in order to experience the indwelling of the living God, Christ living in me and me living in Him.

As the trees change to autumnal colors and I find myself purposefully traveling roads with hilltops that afford me a larger breadth of view so I can soak in all the beauty, I look back over my life to see the distance I have travelled.  Not all the views are beautiful, I’ve not lived perfectly, just humanly. However, I can see and feel the hand of God lifting me higher and higher until the dead and barren patches are covered over with His forgiveness, mercy, grace, and loving-kindness.  He calls us all to live, move, and have our being in Him (Acts 17:28). He really does make all things beautiful in His time (Ecclesiastes 3:11)!

God’s blessings,
Amy  

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.

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

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!

Completed!

The shower project is finally done! It took four additional weeks to finish beyond the originally estimated three, but it looks great and works even better. My favorite part is definitely the little corner seat, it’s made bathing much easier for me when I am tired. (See pictures below.)

Allegedly, the bedroom carpet install and stretching of the closet carpet is scheduled for this Thursday. Just two more major pushes to go and everything will be back to normal! I guess we will be moving everything from our bedroom to the living room Wednesday evening then turning around to move it all back in Thursday evening. Even so, the light at the end of the tunnel is gleaming brightly. It will feel good to be able to use our closet again, too. We will never again take the small, convenient creature comforts of home for granted.

The fixtures were in about a week and a half before the door and window glass were installed. It was a long wait!
The fixtures are an easy reach from the seat.
The door and window were the final pieces of the puzzle.
The window adds some extra light and some bonus space on the sill.
The inaugural shower was wonderful!

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!

Slowly, Slowly

Quiet, slow moving, solitary days bring plenty of time for reflection and to learn about one’s self.

Since retiring nearly six weeks ago I have moved over to the slow lane of life. My husband spends fourty-ish hours of the week at work, nearly all of my friends have day jobs, and fatigue from my MS nearly always keeps me home. The first few weeks of retirement were borderline catatonic. I was still recovering from my latest exacerbation of MS and only had the energy to do small necessities required to sustain life. The past couple of weeks, however, have typically brought an hour or two per day when I have enough energy to actually fill my time with something other than sitting.

Slowly, very slowly a couple of simple pleasures from my distant past have started to find traction again. My Grandma Lois encouraged me to develop an interest in bird watching during my childhood. She always had a few feeders in her backyard and taught me how to look for distinguishing characteristics between the varieties of birds which came to eat. She kept a pair of binoculars and a bird field guide beside her back-facing windows and I spent many a happy hour watching the ever-changing line up at the feeders – Cardinals, Goldfinches, Juncos, House Finches, Carolina Wrens, Baltimore Oriels, Purple Martins…the list goes on and on. I especially remember being proud that she was so smart. She never had to double check the field guide for names like I did, not even for the rarer ones that didn’t come very often, like the Summer Tanagers or Pine Siskins.

Todd noticed a pair of House Finches early last week nesting in one of the bushes outside our house. This singular incident sent me down memory lane as I recalled all the happy memories of bird watching at Grandma’s. So, late last week I put up a couple of bird feeders in the backyard and, sure enough, I am just as excited now as I was then to see the lineup of different birds come and go. The first birds to the feeders were Goldfinches, House Finches, and Juncos. Memories of Grandma flooded over me and swelled my heart for this exact trio were always her favorite birds. I particularly remember her being excited to see Goldfinches at the feeders each season and her telling me that Juncos seemed to be the happiest and friendliest of all the birds. My favorite so far this week has been a male and female pair of Eastern Bluebirds. They are simply stunning as they sport a vibrant and dazzling blue on top of their bodies, a solid white belly, and rusty throat, chest, and thighs. To me, nothing says Missouri like our gorgeous state bird. Better yet, the time quickly passes as I watch the parade of hungry birds come and go and listen to their varied songs fill the trees surrounding our house.

The other simple pleasure I never actually knew I enjoyed is cleaning. While growing up my sisters and I used to call my Mom a “dirt digger”. She didn’t always relish cleaning but once she got started she meant business. She would get between tiles with a toothbrush in the bathroom and kitchen or would use a toothpick to dig out gunk from the cracks between the pieces of her car’s interior. I think both my sister and I enjoy carrying on this serious-minded cleaning because (a) we take pleasure passing the moniker “dirt digger” back and forth between us and (b) it keeps Mom close in our hearts. I never clean without thinking of her and that reason alone elevates the menial tasks of cleaning to a loved and treasured occupation. Although I tire out easily and quickly these days, I always want to remain a keen dirt digger, even if it is just for a few minutes at a time.

And so, slowly, slowly, I am finding ways to fill all the time on my hands with both old as well as rediscovered interests. I’m looking forward to uncovering additional diversions to fill in the otherwise uneventful hours of my day. I’m in no rush, I have all the time in the world.

Hurry Up and Wait

As promised, here’s the low down on the New Shower So Amy Doesn’t Fall and Break Her Neck update. After three weeks of just sleeping on our mattress on the floor of our front room, we are not only ready to return to our bedroom but have also discovered we are not as young as we once were. Beds have frames and box springs for a reason. All these aches and pains are for the love of sleeping with two cats and for one very allergic nephew. We can’t allow our cats in the back rooms of the house because that is where our nephew sleeps when he comes to stay with us. Well yes, we are just that nutty over BOTH our cats and our nephew!

The end of last week saw the shower framed up with electric wires dangling here and there from the ceiling.

Dust absolutely everywhere!!!

The textured marble pan is in along with some of the inside and outside drywall. They also finished up all the electrical and plumbing bits and bobs Wednesday of this week. Both of the guys are “retired” contractors in their 70s who “like to stay busy.” They earned their pay Wednesday coming in and out hauling materials and going under the house countless times on that drizzly, wet day with near gale force winds. Bless them!

Nice and tidy.

They said they were coming back on Monday. There’s still more drywall to hang, mud, and sand; fixtures to put on; marble to install; and the glass door and window to hang. I don’t know if it will be ready by next Friday or not. Bets anyone?

Time on My Hands

I often think of my Grandma Lois. By the time of my earliest memories of her she had already retired as a teacher and had lost my grandfather, Frank, in an automobile accident. She never learned to drive a car and, since she lived in a small town, there was no public transportation available to her. She rode the Older Adults Transportation Services – OATS Bus occasionally to get to doctors appointments, but had to register a week in advance in order to use the service. Our little town did not have a good sidewalk system back in the ’70s and ’80s for pedestrians and, besides that, she had trouble with her legs which prevented her from walking more than a few minutes at a time. We would swing by to pick her up to go to church on Sunday mornings and evenings as well as Wednesday nights and my Dad always took her to the grocery store on Saturday mornings with us, but other than that she was basically home-bound.

I spent a lot of time with grandma growing up and was always excited to stay with her because she knew how to keep my sisters and I busy with things we didn’t really do at our house. She had a small house but it was filled with wonder. There were birds to watch at her many feeders and a field guide by which to recognize them; there were flowers to plant and water; she had a marvelous collection of children’s books that I loved reading through again and again; she always had something cooking and she took the opportunity to teach us how to work in the kitchen using cool things like a meat grinder or cookie-press; she sewed and quilted and let us watch as she made beautiful things; she had pegboards with houses, trees, cars, and lamp posts to make into a city as well as my Dad’s old Lincoln Log set from the ’50s and a round, tall cylinder of Tinker Toys with which to build. She let us play “beauty shop” with her hair and ate who knows how many Red Hots as “medicine” when we played doctor with her.

But I also knew she had many more days when we were not there to keep her entertained or, probably and more likely, her to entertain us. It’s from these days I have reflected and learned so much over the past few years. She had nothing but time on her hands yet she was never bored or angry about being stuck at home. I was there often enough that I was able to see her living her daily routine and have been able to piece together how she was able to use her time at home instead of killing it or resenting it. Now that I am semi – home bound with my MS, I have an ever growing gratitude and love for her example of how to live a full life at home within a small, daily confinement.

Here are the essential elements I saw her use and have employed myself in order to keep motivated, growing, learning, and busy at home.

  1. Set a relatively consistent schedule of the six essential activities of the day: waking up, breakfast, lunch, dinner, bathing, and going to bed. Fixing these six activities to set times allows you to build a skeleton time frame for adding other things to your day. It also keeps you oriented to time, an important anchor for cognitive awareness.
  2. Keep yourself connected to the outside world. I do this each morning after breakfast by scrolling through various news sites, checking the weather, checking in on the social media platforms I use, and writing cards, sending texts, or calling friends who have been ill or could use some encouragement. Doing this helps foster a sense that you are still engaged with people and emotionally a part with others.
  3. Make time for God. This is one of my favorite times of the day. Begin with a prayer asking God to give you insight and understanding, move on to an in depth Bible study, allow for time to reflect and write down what you’ve learned, and end with a good long prayer full of thanksgiving, praise, a summary of what you learned, petitions on behalf of others and then yourself, forgiveness, and help to do something good for His kingdom today. Doing this will keep you emotionally, mentally, and spiritually grounded for whatever you are facing in your life. It’s a wonderful feeling to be in communion with God through Jesus Christ!
  4. Get involved in a hobby or interest. There’s only so much TV you can watch without feeling like the world is seriously trying to dumb you down. I’ve set my heart on learning German and try to devote some time to chipping away at it each day. I also read, listen to books on tape, crochet, cook, work puzzles, and obviously, I’ve recently started writing this blog. Having a variety of interests to choose from has helped to keep my days from feeling stale and boring. These activities have also given me something to look forward to each day, an event.
  5. Plan time to rest. Yeah, I know it sounds silly, but it’s an essential part of living life with MS and I bet you could benefit from a little down time, too.
  6. Have a regular routine and/or cycle of chores to accomplish each day. This is important to help you feel like you are contributing to the running of your home and gives you a sense that you are needed and useful. Laundry, dishes, feeding pets, making the bed, cleaning house a little each day, taking out the trash, getting the mail…you don’t have to do all of these every day but set an achievable goal for yourself.

Perhaps you have other ideas on this topic that would be useful for others. I would love for you to share them in the comments.

Best regards,

Amy

Not Your Average Monday

It’s a BIG day at our house! One we’ve been thinking about since we bought this place 11 years ago and realized our shower in the master bath was very much like a coffin, but wetter. Well, if not like a coffin it was going to put us in one sooner rather than later. The door has fallen off twice and nearly took off Todd’s foot both times. It’s slicker than an ice rink despite no-slip treads and the step up into it has become nearly impossible for little ol’ MS me.

It’s almost like Christmas with visions dancing in our heads of a larger space made of glass and marble walls with a bench seat; a rain shower over head; a shower wand on the wall; a rail for me to hold on to; a built-in holder for soaps and shampoos; a textured, no-slip pan; and an almost zero-level entrance with a wee ramp to ride up on in my wheelchair, on my less than mobile days.

It’s just like Christmas in another way, too. In order to have the perfect, Norman Rockwell, jaw-dropping, memory making Christmas, someone has to invite, organize, clean, set-up, decorate, bake, cook, shop, wrap, host… themselves into a frenzied, anxiety-laden state before the festivities begin.

Well, that was us yesterday. Oh, man, we had to work hard! Every single thing from the master bathroom AND closet (which is part of the bathroom) had to come out. Several years ago we used to clean the house ourselves, but for the past seven or eight years we have had a housekeeper. But now that I’ve recently (as in a week ago) become a full-time, stay-at-home cat mom, we’ve reclaimed cleaning duties. We decided this was a good way to save a little cash now that I’m fully retired. I quickly realized two things as a result of this decision. 1) When you have other people clean your house you don’t really get a feel for how much stuff you have. My theory is it’s because you don’t have to touch things in order to dust or move them around to vacuum or mop. As a result, it makes it easier to accumulate stuff without clearing out old stuff. 2) It’s a lot of work to clean a house properly!

First, the closet. There we were, Todd trying to watch his toes and me being a menace on my scooter. Back and forth we went, each of us hauling load after load of clothes, shoes, bed linens, towels, travel accessories, and all the overflow soaps, shampoos, toothpastes, lotions, etc. to……..to where?!? We ditched stuff in every closet and corner we could find. We’ll probably never find half of it when we’re done.

As we went, we decided to thin the herd. There were a lot of things that didn’t “spark joy”. To be exact, we ended up with four 30 gallon bags of clothes and two 30 gallon bags of household items to be donated, as well as two 30 gallon bags of trash, and two 30 gallon bags of recycling. Marie Kondo would have been proud.

Actually, the bags of stuff to be donated, trashed, and recycled included things from the bathroom, too. Most of the bathroom stuff went in the trash. Note to self, check your medicine drawer more often. For example, we apparently moved into this house in 2007 with a bottle of Benadryl that had expired in July of 2005.

The shower and adjoining wall took their last few breaths, as time stamped by the clock on the wall, at 8:00 this morning. By noon this is all that was left.

It’s going to be 2-3 weeks before the new shower is finished. I’ll post some updates as we go. Meanwhile, if you need us, just look for the couple covered in and smelling of sawdust and sheet rock.