Being Home

March 23 to April 1st

Being home has a whole set of new challenges. The care from CCAC and from the Red Cross who provide the service has been excellent. The issue of catheter changing has become a non-issue. Darcy changes the catheter and the Supervisor will train the PSW’s individually. I do understand the policy that a PSW is only licensed to do certain tasks and must be trained by a nurse on each patient. The PSW’s in the hospital do a lot less than the Red Cross PSW’s as it is probably a union issue rather than a licensing/liability issue in my opinion.

The challenges of being at home can be more frustrating than the challenges in the hospital. When there was a health issue in  the hospital it would be dealt with almost immediately as a nurse was a call bell away and a doctor was at most a day or two away. Here a nurse is at least a day or two away and a doctor is weeks away, of course there is always telehelp andemerge which could be hours waiting.

Here’s another share everything story. If you don’t want to read about BM’s etc. skip this paragraph.... Constipation has become a bit of a problem and bad enough that I couldn’t have a BM last Sunday night and Darcy had to use her finger to dig some stool out. Then I made a big mistake and read on the Internet constipation vs. impaction and lazy bowel syndrome in people on laxatives and pain meds. Sunday night Darcy called the Telehelp to get some information. Now there was a lot to worry about, with info from Telehelp and the Internet I was sure that I’d need surgery to remove the blockage. All day Monday I was anxious and grumpy thinking about impaction and the side effects and treatments. What a relief on Monday when everything came out all right and Tuesday night was even better.

I called a friend that I met at Parkwood who broke his back when his quad flipped over backwards and landed on top of him. When I heard his problems mine seemed to fade away. He has to insert a catheter about every 4 hours. I am fortunate in that my bladder functions and I have a minute or two warning and I can stop and start the flow. My bladder is just lazy and I have to retrain it and if and that is IF I pay attention I can make it to the washroom in time. I wear a leg bag when I go out but around the house I use a urinal. I’ve had a couple, well a few accidents and the washing machine is getting a workout. My friend is also having bowel issues and we never imagined that the focus of our lives with a spinal cord injury would be BM’s and urinating.

Hopefully my lazy bowel will be trained easily when I get off the pain meds. I have reduced my pain meds from 15 mg to 9 mg and hope to be completely off in the next 3 to 4 weeks. Once off I’ll start working on the laxative, bowel irritants, stool softeners and suppositories. Better get some medical advice on that as they say, “He who is his own physician has a fool for a patient!”

How am I feeling? Well….it’s still great to be home! I think Darcy is much better looking after me here rather than driving back and forth to London.She does need time away and friends are giving her a break. I am going out for coffee at least twice a week. Oops this supposed to be how I feel? I get a little frustrated because I think about things to do then, realize there is no way to do it. I am still seeing the psychologist at Parkwood every couple of weeks. Another frustration is my physiotherapy as I won’t be getting in for another 2 to 3 weeks. I wonder how much I am losing doing my own weight program. A physio does comes once a week for an hour and works my left arm and left leg. It’s good but not enough. As far as pain goes the muscle spasms in my ribs are my biggest problem and the tone and spasms in the rest of my body are exacerbated by the BM and urinating or lack of.  I really need to lay on my stomach but I don’t have a face pillow. My hips and lower back are getting very tight as they are at 90 degrees most of the time and I need more stretching than I can do here. I have ordered a face pillow and it should be here soon and then my buddies will be able to flip me over on the living room carpet. I ordered a recumbent stationary trainer which will be here on April 11^th. My friends come and stand me up and I was standing for 3, 4 and 5 minutes last week.

I attended a dinner party on Saturday night and missed the 8:00 o’clock bowel care. It was very interesting being at a party with friends. Normally at a party I’d have a couple, ok a few, glasses of wine and mingle. In a wheelchair it was impossible to mingle and they had to come and talk. The party was great and I enjoyed it thoroughly…...even without a glass or two of cab.

Thanks for listening…..