Redefining Disability Project ~ Post #14

Link

Question #14

Describe a bad day.
Oh boy! Remember Rose, you asked for this.
It starts before I really am awake. I'll try to roll over in the bed. My back will protests with more than the morning's usual Rice Krispies (snap, crackle and pop). In fact, the act of rolling over to the edge of the bed to rise is almost impossible without the aid of a combination of using the headboard, a foot hooked at the edge of the mattress pulling me over the edge to a falling standing position. But before any of that, I've got to don my knee-high compression hose, my AFO and shoes or I really will hit the floor unable to stand. After a few attempts, I can.

I'll walk to the bathroom hunched over like a 100-year old woman. I'm older, but not that old yet. I'll kick out of my pull-up diaper because it was impossible to hold my urine through all my gyrations of getting out of the bed and walking twenty steps to the bathroom. Then more of a exotic dancing to get myself wiped down and into a dry pull-up, and put on my shirt and pants.

I'll continue the bump and grind routine until I'm fully clothed. A quick glance in the mirror shows signs of a rough night of cramps due to my spasticity. A head of hair going every which way. I'll wet a brush and try to brush it down. Finally in disgust at my unruly hair, I'll hobble the fifteen steps to my office down the hall. I turn on the light switch only to be greeted by a flash of light, a popping sounds, and total darkness. The bulb in the ceiling light fixture has blown. I'll waddle to the desk light to switch it on, kicking the rolling executive chair in the process with my shoe covered toes.

Glancing at the wall clock, I'm two hours late taking my medicines and my husband is an hour late taking his. I mentally stumble over the revised medication times for the both of us and I haven't even had my first cup of Earl Grey yet. I can already tell, it's going to be a multi-cupper day.

I administer my hubby's morphine and other drugs, and make him a cup of Colombian coffee. Nothing fancy just plain, good coffee and a cinnamon roll for breakfast. I grab a low-fat Greek yogurt and a plastic spoon and head for the office again. A quick stop at the hall closet I hook the step stool on my shoulder as I go. Years of experience told me to always keep a package of light bulbs in each room.

I sit in the darkened room and finish my first cup of Earl Grey and the yogurt, and set up the step stool. I mount the first two steps holding onto the back of the office chair for balance. I just raise my left foot when I hear, "Help! God, help me!" come from the living room where my husband is stationed.

I slide down the two steps and made my way into the living room in my old woman shuffle. He is lying in the bed with his coffee cup turned sideways. Hot coffee has spilled all over him, the bed, and was now dripping onto my wool carpet. I snatched the blankets and sheet off his bed one handed, and threw them across the room in the general vicinity of the hamper. Unbuttoning his dress shirt, I found the coffee had soaked through his under shirt too. I'm stripping him naked, wiping him down as I go, and putting fresh clothes on him again. I had no sooner gotten him dressed than the laxative I'd given him the night before started working. A wet sounding fart, and then a gurgling sound hit me before the stench. A really bad day consists of four or more of these.

An hour later, he is resting comfortably dozing in his nice clean bed while I make my way back into the office the change the light bulb except now the Clonus tremors start in my paralyzed leg. There's no way I can climb the step stool with that going on. I'll just have to answer my emails in the dark. I could open the blinds and the drapes but that would mean reaching across my desk to reach them.I contemplate a pain pill but discard the idea. Today was therapy and grocery shopping day. Right about now, I'm wishing I was Jeanie, I Dream of Jeanie, blink and nod my head, and all of it would be done.

I've run out of ink in my printer so I hand write my grocery list and head to the store. The list isn't that long about a dozen items. I should be done in no time. No riding cart when I entered the store so I sit and wait for one. I could push a shopping cart and walk, but it would take me twice as long. Finally a cart. I jump on and make my way through my list. I'm about three quarters done with my list when the cart begins to make that ominous beep of a low battery. I grab the nearest stock person and ask if they will get me a shopping cart. I transfer all my groceries to the cart and continue shopping. Luckily, this was not a major shopping day with forty items or more. Why is it when you are going to the checkout in a store EVERYONE else decides to checkout with you and beats you to the register?

I get home and hear my husband say, "Thank God, you're home!" As if I had been gone for hours instead of twenty minutes. That simple statement forewarns me that he's having a panic attack with his racing heart beat and very low O2 sats because he can't breathe. I'll have to sit and talk with him for fifteen minutes while his ice cream is melting in the car. Eventually, I'll be able to go out to the car and get the groceries. I'll put the cold stuff away and check on him. Really that's just an excuse to plop down in my rocking chair and rest for a bit before I put the rest of the groceries away. These attacks happen when I'm away from him more than fifteen minutes. Even if I'm in the next room. Up to five times a day makes this a really bad day.

Meanwhile, I'm still dealing with the back pain. Combined with the end of my Botox cycle, my arm will spasm nonstop. My shoulder is screaming at me to move except the other muscles won't let it. My leg starts with Clonus tremors, it stops, and then start again. I look longingly at my Tramadol sitting by my computer... knowing I can't take it and function. All the muscle relaxers I'm already on make me drowsy enough.

I look at the clock and it's only noon. I still have the afternoon and evening to go. This is a bad day.