Before Prednisone (cont.)

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? 

Before Prednisone

Last week, January 3, I said my pain was at a 7 when I was at the Dr's office. What that doesn’t say is even more revealing.

The night before, I had been seriously wondering how many more times I could get up in the middle of the night to go to the bathroom without assistance.

I already wear a Tena pad constantly. I do not always awaken with an urge to ‘’go’. Sometimes I wake up because I am in pain, or in discomfort or I’m just restless. I have learned through experience that I have to get to a sitting position before I’ll know if I have to urinate. It can become quite intense the moment I become vertical. So . . . can I slip my bent legs off the edge of the bed enough to get my feet free and rock myself back and forth (head to toe) to get up, or , if my elbow and shoulder are strong enough, can I leverage myself up?

This is where I started to become worried, wondering. My shoulder and elbow hurt so much. I can’t use the walker to pull myself up. How close am I to having to call out to someone to help me sit up? Tomorrow night?

I have to sit on the edge of the bed for up to 5 minutes before I move to get up. Standing has become iffy. The Vimodo pain pill has at least allowed me to unbend my legs without worrying I will dislocate a knee - that’s how much the swelling has gone down. My trusty Birkenstock sandals are always parked on the floor under the walker so I can slip into them. (I cannot walk without shoes with arch support. Forget barefoot, even on carpeting.) Now I just have to be able to bear listening to the bones in my left knee rub together like knuckles cracking until the legs are extended straight enough to walk on.  Whether or not my feet are pointed straight in front of me. Actually, I no longer know when my feet are pointed straight; my knees are twisted enough I have to look at my feet to make sure. This puts the least amount of strain on my knees when I do stand.
OK, grab onto the handles of the walker and start counting.
I literally rock back and forth like I’m in a rocking chair to get enough thrust to get my butt off the bed. Before I took Vimodo, it took until about an 8 count. It’s like a 3 count now. And then every muscle tenses with the effort to stand and simultaneously try to block out the sound of the bones crackling (because you know that can’t be any kind of good news and it’s too much to contemplate right now). Try to put most of my weight on the stronger leg, whichever it is at the moment based upon knee pain level and how much each leg will straighten. Some of my apprehension has disapated as swelling has gone down. On the other hand, I’m getting weaker and weaker. This time, the 3 count isn’t enough to overcome the inertia. I deliberately relax my muscles for a few seconds, take a breath and grab the walker handles and start all over again.
I’m standing, even if I’m hanging onto the walker for dear life, hunched over, forearms flush along the handlebars bearing a lot of weight. I have rheumatoid nodules near both elbows from doing this.  Be still as I survey my body legs, knees and feet - am I steady enough to take a step yet? Which foot first? (Which knee is most steady, which foot hurts least?) Take a step. I do not fall. Do not think about it if it hurts a lot or a little, just don’t think about the pain because I have to keep moving forward, forward, forward. Move the other leg. Is it easier to move this leg? (Forward, forward, don’t stop for anything). Two more shuffles and the walker is at the bathroom door.
I’ve moved 3 feet from my bed. I have to get the walker 2 feet into the bathroom before I will get to the entrance. Then I have to turn it around 90 degrees to back up to the toilet.
(Have I mentioned I have to go really bad? Have I mentioned I am coaching myself under my breath “You can do this, you CAN do this, you WILL do this, . . . “?)
Shuffle my feet around slowly so the kneecaps don’t wiggle around, still feeling them sliding around in the knee. Simultaneously rotating the walker. It’s a tight fit in a 4 ft wide bathroom, but I have it down to a science. And I can always leave one of the pocket doors open at night. Time to sit down. Assess whether I can let go of the walker with one hand while I grab onto one of the assist arms on the toilet. OK. Just keep holding on to something somewhere because we’re none too steady here. Move the other hand to the other arm. Squeeze as hard as I can with my hands and lower down to sit. It hurts my knees, but the seat is higher than the bed, so it’s more comfortable.
The pressure is off my knees, legs, feet, arms, bladder. I can evacuate and rest. Breathe! I made it!!! Get the toilet paper ready. Ouch, my shoulder and elbow do NOT want to bend and twist. Take a breath and get it done. Wait a couple of minutes. (Am I really done going?) Must use left arm/hand because right arm/hand is no longer flexible enough to ‘reach’ to wipe myself. Sorry, probably TMI.

Get ready to stand up and wash my hands. Standing up again is almost always easier because I’ve done it once now. So I get up again. And shuffle and rotate. My feet are KILLING ME. I really cannot stand to let go of the walker to wash my hands. Forget the hand washing. I have to shuffle those few steps back to bed - and rotate me and my walker around, hang on and lower myself onto the edge.

Sigh of relief.

It has taken me up to 20 minutes to do this. Now all I have to do is scooch around and lean to my left while I lift my right foot onto the bedrail, then onto the bed. My leg is very heavy. Sometimes I just use my arm and hand for an assist. Now, can I get the other leg up?????

OK. I’m lying down on my left side. I leave the tv on for a nightlight and to lull me back to sleep. I’ll be up in 2 hours to do this again.
So I sat on the toilet in the middle of the night wondering how much longer it would be before someone has to half carry me to the toilet several times a night. It was pretty depressing.