The longest I’ve slept at night is 3.5 hours. I generally sleep 6 hours a night altogether. I have to eventually wake and sit up to take the pressure off my aching shoulders when prone. I am beyond being able to wake up, feel rested, and stretch the kinks out. The ‘kinks’ don’t go away. I’ll sit on the edge of the bed for 15-30 minutes before I start the day by dressing. I can no longer stand or walk without a walker.
I go through the same process to get up from and sit down in a chair as I do in the middle of the night. Usually rising from my lazyboy. Which rocks. Which just adds another complication when what I really want is stability.
At best, I can usually manage about 3 continuous minutes on my feet before I HAVE to sit down. My knees are ready to spontaneously bend and my feet are ‘on fire’ at this point. If I’m standing on the tile floors in the kitchen or bathroom, my legs have a tendency to “lock” at knees and not want to move. Which means I’ll tip right over if I’m not holding onto something for balance.
I can barely hold my silverware. I can barely lift it. It feels heavy. It’s so heavy it makes my arm and wrist ache trying to hold it up off the plate. So, I put the utensils down between bites. Making a motion to turn a spoon or fork toward my mouth torques and HURTS. Lately, I have a sharp stabbing pain from my wrist extending halfway up the outside of my arm to my elbow. Pretty soon I will not be able to cut my meat. Every finger except for my ring fingers are inflamed to the point I cannot make my nails meet my palm. I cannot open or close a zipper bag, a “Pull Here” or a “Tear Here”. Resealable is a joke, as is Tupperware. A blister pack better have something pretty indestructible inside by the time I break into it.
It’s taking longer and longer to cut and measure everything for my granola and trail mix. Breaking it down into chunks ( take out ingredients, rest, gather utensils, rest, set up work at dining table, rest, chop dried fruit until fingers/wrist can’t move, rest, chop some more, stand up to unlock knees and hips, measure, mix and bake, rest, package) I can make granola in an hour and a half, trail mix in about an hour. Used to take me 10 min total to prep, mix and package trail mix - just a year ago. I plan all day when I cook something. A sandwich becomes at least a 2 step up/down/rest process.
I use a different aluminum walker outside the house that’s smaller and lighter for transport. I think it takes 2-3 minutes to get my coat on. Closed toe footwear no longer fit my feet without pain, so I wear sandals and socks in the cold months. It takes 5-7 minutes to get to the car if it’s literally parked outside the front door. There is a six inch step down from the house at the door, a sideways shuffle on the porch to clear the way for the storm door to close, the width of 6 feet to the edge of the porch onto the driveway and the car door. The porch is 8” off the driveway. I balance myself by leaning on an aluminum porch column to edge my foot down onto my stronger leg. Then I hobble a couple of steps to the passenger door. Six months ago I could stow the walker in the back seat and hang onto the car to get back to the front door. Now I can only just manage to turn around and try to get my rear up onto the seat - which is two inches above my rear end. Again, I take a deep breath before I try to bend my left leg and twist and lift it over the runningboard. The Vue is at least lower than a truck. I do not know how much longer I will be able to do this either. Half the time I have to grab my pant leg to lift my leg and complete the motion. Get the remaining leg into the car. Tell whoever is waiting to “spot” me I’m OK. Close the door. Find the seatbelt. Hope I can latch it myself.
This is followed by a car ride usually long enough for my joints to begin stiffening again. And I have to remember the car is far enough off the ground I will be falling out of it to stand again.
When we get back home, I can no longer grab onto the column on the porch to get up that 8” step. Or up the next step into the house. Someone has had to give me a boost by standing behind me and lifting/holding me under the arms since Thanksgiving. Only two months ago I lost this ability.
I leave the house once a week at most. I go out even less now I need a wheelchair. It's too much trouble to get it into the car and then it takes up half of the cargo space. I can no longer push a shopping cart in the store and use it for balance. I cannot even use the walker to get into the store. Someone usually goes into the store to get me an Amigo. I cannot go into a store that doesn’t supply Amigos. It’s bad enough getting the wheelchair out at the doctor’s office.
How many people are standing in line to take me somewhere when it takes this long and I am exhausted by the time I’m seated just prepared to go somewhere?
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