Thursday, 2 March 2017

The First Hour Of Each Day

What if I told you that, every day, for the rest of your life, the most difficult hour of your day would the first hour of your day? What if I told you that during those first 60 minutes you would break into a full sweat from exertion at least three different times, doing three different things, yet accomplishing nothing more that going to the toilet and getting dressed? What if I told you that, at least two different times, you would experience a panic fear of falling over, tipping over, tumbling over, whatever? How would it impact you if I told you that, in spite of all of this emotional and physical exertion, you would get weaker and weaker each day?

That is what the first hour of every day is like for me. The simple act of sitting up in bed takes multiple tries, pulls on my bed rail, twists to get my body into position. The transfers to my commode chair causes both fear of falling and sweat from exerting. Getting my underwear off so I can go to the toilet is exertion enough to make me break into a full sweat once again. Then I have transfer back onto my bed and go through the toil and trouble of getting myself dressed. Along the way are the exercises in washing, brushing teeth, rolling from bathroom to bedroom, and the inevitable picking up of things I drop.

The outcome of all of this exertion is that by the time I get to my kitchen, I am too exhausted to bother making anything to eat. Even getting breakfast cereal down from its place of easy reach on top of my freezer is fraught. Thanks to the mornings activities, my hands are shaking. Grabbing a box and pulling it down often leads to dropped cereal. Toast in the toaster? Requires opening the fridge where I keep the bread, opening the bread bag, rolling over and reaching for the toaster, pushing down the handle. All of these things have become increasing difficult of late. My upper body is failing me completely.

Home care is some help with this. In fact they are about to become an increasing help. It's getting too hard for me to do it alone. Right now I run this morning gauntlet solo four days out of seven. My hope is that, by the end of next week, I will have morning help for the full seven days. I am at the place in this disease where I need it.

This next paragraph is all about what I want; selfish but true. My goal is to have home care come in earlier Monday through Friday, or more likely Tuesday through Friday, say at 9:00 AM or so. I want to sleep in at least until 10:30 on Monday; Sunday evenings are often spent with guests, and more likely noon on the weekends. I want them to come and help me on those days too. When they are here, I want them to help me get up and onto my commode chair. While I am in the bathroom, I want them to make me some breakfast. Then I will need them to help me dress and make the transfer to my wheelchair. All of this, of course, is on top of my regular shower routine on Monday, Wednesday and Friday.

I am asking for a lot, all of it to ensure that I don't start my day exhausted, that my first hour is not my worst hour. It's where I am these days.

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