Today didn’t go as planned. It’s been an ALS day. It is Saturday, the day Mom and I do something. We had planned to go see, The Great Gatsby, this afternoon but I had to cancel. I had a rough night all night. I puked in my sleep. Not a lot, but it woke me right up. No matter how many times I brush my teeth or rinse my mouth, I have that putrid taste and my tongue is burning. I don’t know how much of that was from ALS but I believe it would have been handled better and I’d be feeling fine now if not for ALS.
Mom usually still comes over to visit on bad Saturdays, but I just felt the need to sleep, even though I couldn’t, so Tony called her. Mom and I will make up for it, she may visit tomorrow, or who knows, I may be up to leaving.
Today I was so sore I couldn’t speak to Tony much. He stayed in his office with the baby monitor, coming right away with the quietest call from me, until he gave in and is now taking a nap beside me. I know this exhausted him too.
I’m so exhausted and I’m freezing in a room that’s not cold. My temp is fine. My muscles ache, especially in shoulders, my legs are mostly twitchy and crampy.
I feel so weak that I don’t argue when Tony pushes me to the sink or bathroom. I’m too weak and just drained. It’s hard to explain. I started to compare it to the flu but it’s very different. I’m weak with twitching and cramping muscles. Today isn’t one of those days when I feel like I can just get up and run downstairs, Today I know my limitations. Limitations caused by ALS.
It’s getting better now but in the night and first half of the day it hurt to breathe in very deep. Mainly in my mid to upper back that wraps around the sides. I hate that feeling, I’m scared my diaphragm or intercostal muscles are cramped and causing the pain of not being able to breathe deep. Having my ventilator on intermittently has helped and the stiff/cramp feeling in that area is gone. It fits the course though. I’ve been feeling more and more twitching in that area for a while. Lately I’ve been having more and more cramping, going by other muscle patterns, something is being killed. Hopefully some other back and side muscles. I hate you, ALS!
I’ll end with saying this has been an ALS day. ALS wins today in two main feelings – anger and fear. ALS won today, but there are many days ahead. ALS is a daily battle, but you know how the war ends. How it has ended for so many before me. If I keep on, this will turn into a bitchy, whiny ALS cursing mess. Frankly I don’t feel well, and I don’t want to give ALS the honor.
I do what I can and still wish for a true treatment or cure. As I move forward I take ALS day by day. Minute by minute.
Until next time, take care,
This article was written by April