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
Amy's Axons 
You are such a gifted writer and photographer
Your writing is incredible actually
Thank you to the insight to what you are going through with MS. I miss you and love you friend
Sent from my iPhone
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Reading this…You would have appreciated my kids needing to stop for the restroom about every hour on our Westward adventure to Idaho, Wyoming, and Utah. You would not appreciate the amount of driving there is to get anywhere in the West. The restrooms are spaced 60 miles apart, or they would have stopped more. There are areas where people don’t exist. Just miles of farmland. I was impressed about how much farm it actually takes to feed the people of the U.S. A ton. And, I was taken with the idea that farms our are number 1 MOST important resource. How can a country be stable if there is famine? So…Farmers need 🏆 awards…not hip hop and movie stars. Boy do we miss the mark on who we choose to honor in society.
Thank you for being a voice for people with MS. Some people may not be able to put into words or describe it so vividly for people to understand the depth of it all.
See you soon!
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