For there is one God and one mediator between God and mankind, the man Christ Jesus. ~ 1 Timothy 2:5
One more post has come to an end. ❤️, Amy
One Singular Sensation!
Tag: spoonielife
Breath In, Breath Out
Sometimes I’m really proud of myself for being able to keep the rhythm of breathing going, such is the joy of MS fatigue.
In my last post I said I would try to write something about my MS, so here it is. Whew, this summer has been a challenge! I have had a smattering of a few good days here and there and even a few strung together in sequence, but more often than not I’ve been under the thumb of pervasive, domineering MS lethargy. Nope, it’s not the kind of tired that needs a nap and sitting to rest for a spell doesn’t shift it at all. Like having a bone dry fuel tank, no matter how hard you try to go, you end up getting absolutely nowhere. The engine won’t start, the wheels won’t go anywhere, the brakes won’t compress, the electric windows won’t budge… technically it’s a car, but it’s good for nothing. I still look like Amy on the outside but there’s no juice to animate me. The electrical wires of my nerves are stripped and the signals my brain tries to send to make my body move either can’t or only partially get through. As a result, I don’t walk right, my hands don’t work the way they’re supposed to, my bladder doesn’t know if it’s holding or letting go, my thoughts struggle to be strung into words, and my balance is all over the place making me stagger around like I’m drunk. Normal things like showering, getting dressed, eating, and even sitting up use inordinate amounts of energy because my nervous system is having to work 1,000 times harder than yours just to get the signals through. Some days, for some inexplicable reason, I spontaneously recharge fairly quickly and I get to do things other than basic human functions – these are my good days. Other days, most days if I’m honest, time passes from my favorite chair or lying in bed. I read, listen to audiobooks, put puzzles together on an app, watch TV, and snuggle with our cats.
MS and heat don’t mix, it makes all symptoms worsen, so I haven’t been on the patio taking pictures much the past few weeks. However, the past couple of days have been milder allowing me to snap a few pics of my feathered friends.
May God be with you! ❤️, Amy
Quiet Days
It’s been a month of MS fatigue and quiet living. I’ve ridden my scooter a few times to the lake in our neighborhood and enjoyed the dragonflies and flowers always present. Here are a few of my favorites.
One of these days I’ll write more. God be with you! ❤️, Amy
The Blahs
I’ve got a case of The Blahs, not to be confused with The Blues – which I don’t have.
MS has been busy fatiguing me of late without allowing me to pursue much sewing or exploring around to enjoy photo taking. The weather has turned cooler so most of my bird watching has been through the windows instead of on the back patio. I did get a few snaps with my phone of the cats doing cute things. Well, they’re cute to me, anyway.
After a long 35 year battle with breast cancer, my stepmother passed away a couple of weeks ago. She had suffered so much that it was a blessing to know her pain was over and she had gone to her heavenly reward. Of course, my sister and her family came up from Texas for a few days in two consecutive weeks. They got to say “goodbye” the first week and were here for the funeral later the following week.
I’ve been putting a lot of puzzles together while listening to Charles Dickens novels. So far, Bleak House and A Tale of Two Cities (both of which made me cry) have been my favorites. I just finished Great Expectations and am only three hours (out of 23) into The Old Curiosity Shop. I have A Christmas Carol, Nicholas Nickleby, and The Pickwick Papers waiting in the wings. I’ve read some of these before but am enjoying how they sound as audiobooks with wonderful readers speaking life into the characters as they do all the different voices.
(American) Thanksgiving will be a much smaller affair than usual but we’re looking forward to seeing my Dad and my step-sister’s family. In the true spirit of the holiday, they are each bring a couple of dishes while hubby and I do the rest. Despite all the troubles in the world around us, we have so many blessings for which to give thanks. I hope you find many blessings to be thankful for too.
God be with you. ❤️ Amy
Animal House
We did a few days of dog sitting for family over Labor Day weekend. I discovered I like dogs better than I thought I did but, WOW, they are a lot more work than cats.
This little beauty had a ton of energy and needed to go on walks as well as run around the backyard. I dug deep to find the energy to walk her around the neighborhood a couple times per day for three days in a row. I can see why people with MS might want a dog. Their basic needs trump even the emptiest of MS energy tanks because when they gotta go they gotta go 😁.
Hubby loves dogs and they always seem to gravitate to him. It’s a good thing we kept poochie over a weekend and we could tag team watching her since we had to keep her on a leash when not in her crate. We wanted the cats to still feel like it was their home and they were safe from well-intentioned but unwelcome bouncy-flouncy invitations to “play” chase.
After the doggy went home, it took a few days of solid rest to recover. I didn’t do much of anything but enjoy these beautiful, freshly fallen leaves from our River Birches.
As I mentioned in my last blog, I had my third Ocrevus infusion in late August. I self-isolated at home for a couple of weeks both before and after the treatment for a bit of extra assurance that I didn’t get sick. I’m pretty used to staying home a lot but I am certainly glad that is over. During my confinement I practiced various lessons from Dorling Kindersley’s Digital Photography Complete Course: Learn Everything You Need to Know in 20 Weeks. Naturally, I used my two favorite muses 🐈🐈. The photos below were taken as I practiced shooting from various angles.
The big, orange bouncing ball that is MS has been all over the place: up, down, out of bounds, in play, and even deflated. Some days I’ve been able to enjoy a walk, sewing projects, baking, and even a little gardening. Other days I’ve barely been able to step out of bed, take a shower, feed myself, or muster the energy to sit in a chair. It is so bizarre, I can’t describe it. It feels like I am disconnected from myself and am living someone else’s life because it doesn’t feel like me.
I treasure the good days or hours of the day, and sometimes just the minutes of the day, when I am motoring along and feel like I have sovereignty over my body to do the things I want to do. I know God has given me every blessing in Christ so that whether it is a good MS day or not, I can give thanks to Him and live a contented life.
To the praise of His glory!
❤️Amy
August Is About to Adios
August has provided us several opportunities to enjoy time outdoors, as the pictures below document. We had a few unseasonably cool days for this time of year that allowed me to get out of the house and explore a few outdoor spaces close to our house. I ramped up my own self-isolation the past couple of weeks in anticipation of my next Ocrevus infusion. Matter of fact, I am writing this in the hospital while the O-juice goes in. The drug was supposed to start dripping at 8:00 but it got held up in the pharmacy until a little after 11:00 😖. It takes about five hours to infuse then I have to wait an hour before I can leave, so it’s going to be a long day. Even so, I’m thankful to be getting it at all since so many others with MS don’t have any options this late in the game (#30yearsofMS).
Hubby had a couple of weeks off between semesters so he tackled restoring the fence around our backyard. The days he worked on it were boiling!
The road back home from the river.
I have had a lot of things floating around in my mind to write about, but I haven’t decided if I want to share them or not. Writing is very pleasurable and cathartic for me and I want to guard it so it remains that way.
May God be with you. ❤️, Amy
Nature Nurturing
We’ve seen the perfect blend of summery sun and rain here in Southwest Missouri this past week. We’re usually roasting in nearly 100*F/38*C by this time in August, but we’ve had gorgeous 77-80*F/21-27*C days. Thanks to the recent weather, nature is lush and bursting with color all over the place around us! The forecast says it will only last another day or two, but it has been a delicious treat while it lasts and a balm for these many months during Covid-19.
A large forested area lies both north and south of our neighborhood with a good sized river about a mile down the road. It has both a well-maintained river access spot and, a little further down the road, an old, reallocated bridge that serves as the entrance for a greenways trail that winds through and circles our city. Additionally, our neighborhood has a little landscaped lake with a walking path, bridge, water feature, bird houses, and a bench along the shore. On Wednesday of this last week MS kindly lent me a decent enough day that I drove to the river in the morning and spent some time soaking in the views from the bridge at the trail’s head. After lunch, I headed off for a lovely, cane-assisted stroll around the lake. There were butterflies everywhere in both places! They somehow managed to lift my spirits on their tiny little wings and carry them about as they soared around and flitted and fluttered here and there. Similarly, as I rested a couple of times on my way around the lake in the afternoon, I found myself smiling as I tried to follow the dizzying courses of dozens of dragonflies going nowhere and everywhere at once. What funny little creatures! Oh, and don’t worry, there are plenty of bird and cat photos below too😻!
This past Friday was an exciting day when…my new camera arrived!!! As you peruse the photos below, see if you can guess which ones I took with my point-and-shoot and which ones were with my new DSLR. The new camera inspired me to branch out and find a new photo editing app to play around with. It’s pretty safe to say I have a lot to learn. As an example, I hadn’t been messing around with the camera for more than five minutes before I realized I needed to invest in a more versatile lens. Some lessons are pricey 😉! No worries though, I am having fun and can’t wait to learn and grow my skills (and lens collection!). It was time for the upgrade because I needed another sit-down hobby to add to my arsenal of things to do when the MS monster has me lashed to the couch.
Speaking of MS, my next Ocrevus infusion is at the end of this month. Let’s see, this will be my second full dose which means I’ve been on it for 18 months. For the first time since starting it I think I’m experiencing the “crap gap” I’ve heard other MSers describe just before their next dose. My already ridiculous fatigue intermixed with poor balance, endurance, gait, bladder issues, clumsiness, sluggish word finding, and occasional cog-fog have all ratcheted up to the next level over the last few days. I hope topping the tank with more O-juice knocks my symptoms back down to the previous notch.
Part I: Riparian and Lakeside Entertainment
Here we are at the end of another blog. I looked back and realized I have been posting weekly lately. I didn’t mean to, or not mean to, it just happened. Will there be another blog next week? Maybe, I guess we will both have to wait and see😁. Either way, I’m glad you stopped by for a look-see. May God be with you! Amy
The Orange
At lunchtime I bought a huge orange —
The size of it made us all laugh.
I peeled it and shared it with Robert and Dave —
They got quarters and I had a half.
And that orange, it made me so happy,
As ordinary things often do
Just lately. The shopping. A walk in the park.
This is peace and contentment. It’s new.
The rest of the day was quite easy.
I did all the jobs on my list
And enjoyed them and had some time over.
I love you. I’m glad I exist.
~Wendy Cope
Oranges are my favorite food. Orange is the color for MS Awareness. I love poetry and Wendy Cope writes good stuff. Titles for my blogs are always kind of hard to settle on, but this one was easy. And so, it occurred to me that it must be time for a post.
Besides, daily and ordinary things are important. Tethers feel good when life is pitching up the sea all around you. Maybe your ordinary day looks different than it did at the beginning of the year (cough – Covid), but I hope you have found some level, familiar ground upon which to walk. Everything is pretty much the same as before for me thanks to my parasitic sidekick MS. It’s been doggone hard to walk the past couple of days, so I’m especially grateful for the little things that help me get through the endless hours of sitting.
Cue a few of the pictures I’ve taken this week.
Part I. Light
Part II. Birds
Part III. Cats
Part IV. MS
Part V. The Orange
I hope you have a “huge orange” kind of day. God be with you! ~Amy
Life During the Time of Corona through My Camera Lens
We’re both ready for the current madness to end and return to whatever the new normal will be, I’m sure you and yours are too. Stay sane, safe, and healthy, we’re all in this together together ❤!
Adventures in Moving House
Well, the deed is done. We moved and have been in our new house for exactly one week! Mercy, moving created a strange brew of fevered, paradoxical feelings. We were always somewhere between excitement and dread; anticipation and foreboding; exhaustion and exultation; and daydreaming about what we were going to do in our new house, then mixing it with the reality of our bank account.
Thankfully, once our old house sold we had about three weeks to pack and get ready to move into our new house. As you know, I struggle mightily with fatigue related to my MS. My Hubby was super busy with work so I created a plan of attack and paced myself to get everything packed and labeled for the move.
The day of our closing finally arrived and we celebrated by having dinner with Hubby’s Mom!
We closed on a Friday and had arranged for family and friends from church to help us move boxes on Saturday. We have such wonderful people in our lives! I sat in a chair and directed traffic so everyone knew where they were going. I’m pretty sure some child labor laws were broken.
Our Cornish Rex cats, Laudy and Pip, made the transition to the new house swimmingly. They hung out in our master bath and closet during the move, then came out once everyone was gone to check the place out. Our new reclining love seat provided a much needed place to take a break. There was little rest for the weary though. We worked hard Sunday afternoon to clear paths and locations for our furniture.
The movers arrived Monday morning at 8:00 a.m. to load up our furniture and appliances from the old house to take to the new. I stuck to my scooter all day in order to make it through the day.
I had done pretty well Saturday and Sunday managing my energy, but I was really struggling to keep going by Monday evening after everything was finally in our new house. Both the cats and I were turned around and upside down.
Somehow everything in life seems to happen all at once. It turned out that my first full infusion of Ocrevus just happened to fall on Thursday of last week, three days after we moved. I expected, and was correct, that I’ve been extra tired since getting the drug. I purposefully allowed myself to work past what I knew was good for me in order to get as much done as possible before the Ocrevus took me down.
Slowly, I’m recovering from my treatment and our new house is feeling more and more like home. I do a little bit each day and my hubby does a whole lot each evening. We’re hoping this is the last move we ever have to make. But even if it isn’t, what I love most about my home is who I share it with 💕.
Amy's Axons 