Panoply

It's been a rough couple of days, partly my fault, partly the fault of ALS, and partly a dental issue which is nobody's fault at all. I am writing now, reluctantly, because I know if I don't write today there will be concern amongst those following me. So here is the story, starting with my part.

On Tuesday night, Anne and Anisa came over the bottle wine. I would like to say they helped me bottle wine, but that would completely misrepresent the situation. I was banished to the living room while they did the work. At least they let me get involved in making dinner, a little bit. So, banished as I was while they worked, I had nothing to do but test the new wine and drink some of the aged wine for comparison. The new wines were a Chardonnay and a Cabernet Sauvignon. The aged wine was a Montepulciano. I'm not sure they were fair comparisons.

Anyways, we bottled wine. Then we had dinner. Then we bottled more wine. Then we cleaned up. This whole process took us well past my normal bedtime, so I decided to make a night of it. I had my HCA set my sling into the wheelchair so I could sling myself to bed. I asked Danny, who came after all the wine was bottled thus forcing himself into the position of clean-up, to put a tie-down strap across my bed so I could pull myself instead of just hanging in the air hoping for a breeze or gravity or some other non-intertial factor to drive me across the bed in my sling.

My friends left. I stayed up. Late. Very late. It's something I don't often get to do, so it was 2:00 AM before I decided to stop binging on Netflix. I wheeled into my bedroom, lifted out of my wheelchair, grabbed the strap and pulled. This is when I discovered that the pull put me at 90 degress to the bed's direction. I had no manner in which to rotate the sling. I was over the bed, trapped in the wrong direction.

When in doubt, use force. That's what my Dad always said. He wasn't often correct, but it was what he always said. So I heaved myself back to the wheelchair, wanting to use it as a twist and push object in order cross the bed while spinning into position. Unfortunately I failed to notice that my catheter night bad had slipped from it's position on my lap, hanging itself just low enough to snag the edge of the bed's sideboard. I pushed. Hard. The night bag snagged. My catheter came snapping off of my penis allowing the whole shooting match to fall to the floor.

On the other hand, the twist worked, in two ways. First, I found myself such that with a minor effort I could do the last spin and drop nicely into bed. Now remember. I am in my sling. By this time I had been working on this effort for nearly a half hour... in the sling. So I reached down and grabbed the bed sheet, that reach creating a substantial forward bend in my body, thus releasing a small but not trivial bowel movement. I set down on the bed, laid in place, and called Home Care to come and clean me up. It was now 2:29 AM.

The Night Nurse from Home Care arrived at 3:20 AM. It only took her about 30 minutes to clean my up. She was off and at the ripe hour of 4:00 AM I finally tried to sleep. Unfortunately try is all I could do. Sleep would not come. I tried turning, sleeping on my side then on my back. I tried counting; I must have counted to a hundred at least half a dozen times. Then, in one final, desparate effort, I thought I would try to turn competely over, something almost impossible for me to do. The advantage of this effort is that it would exhaust me as well and put me on my other side, relieving the pain in my left shoulder as well as the pressure on my left butt cheek.

It was 6:00 AM. To make myself ready, I grabbed the catheter night bag, lifted it across the bed, then inadvertently dropped it, where it came to rest for a moment halfway between the top of the bed and the floor, the weight of it all hanging on my catheter's condom. The condom held, however the penis band slid off, leaving the condom hanging by the thinnest threads of flesh. I was twisted on the bed, having shifted my head and shoulders to the right while my non-cooperative feet stayed on the left side.

I decided to keep going, knowing full well what would happen in the course of the activity. I forced the roll of my feet using my shoulders and arms to well past their full extent. It hurt. I groaned in pain as my body slowly toppled over to the right, enough in place so I could sleep. Then it happened again. My condom came off. I grabbed my pee jug, put it beside me, and decided to sleep, peeing into the jug if required.

Pee came. Sleep did not. At all. Finally at 7:15 AM I gave it all up, calling for CBI Home Care. They sent Samhar, my regular HCA. She arrived at 8:04 AM, tidied me up once again, and was on her way by 8:30 AM. I rolled on my side and finally felt the delicious flavour of sleep in my brain. I managed to sleep for about 90 minutes.

Samhar arrived at 10:30 AM for my normal morning routine. I was so exhausted I did not shower. She wiped me down instead. She put my in my power wheelchair where I spent most of the day napping. My only task was to put the laundry into the dryer, then take it out when it was done. However I had a 4:10 PM appointment to get a filling repaired. I napped past my deadlines, so I only managed to get the laundry into the dryer at about 3:00 PM.

I went to the dentist for what I thought was a simple filling replacement. This was at 4:10 PM on Wednesday. We began trying to freeze the maleficent tooth. It refused, and refused, and refused. The dentist ended up using over a dozen injections of freezing agent in various areas of my jaw and lower lips. Finally the tooth and jaw froze up, along with everything on the left side of my face right up to my ears and halfway up my nose. He fixed the tooth in about 45 minutes. I was sent home.

There was never so much joy within as there was when Kabira came early last night. I was into bed at 9:00 PM. I took a zopiclone, sending myself in the the deepest, most enduring sleep one can imagine. I didn't wake up until 10:30 AM today, at the arrival once again of Samhar. I also awoke to discover that my jaw was still frozen. We did our morning routine. Samhar put me in my chair. I was still exhausted, still needing rest.

Unfortunately this morning was the day when the ALS Society was coming to repair the damaged wheel on my wheelchair. The bearings on the front right caster had completely shattered on the inside of the wheel. Alan and James from the Society arrived at 11:38 AM. They worked for about 90 minutes on my chair, while, at the same time, my AHS Nurse Coordinator arrived to review some things from me arising out of our Tuesday visit. I was on the couch until all parties were done and I could get back into my PWC.

Once in, I parked in front of my window and napped until about 5:00 PM today, when I started this blog post. It's taken me 40 minutes to write this. The freezing is just now finally leaving me. I'm tired. I want to go to bed. It is my sincerest hope that my HCA for tonight arrives early, as early as right now perhaps.