Have a lovely day! God be with you. ❤️, Amy
It’s Blooming Spring!
Tag: MS life
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
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
Amy's Axons 