About Me

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Born 1969 England. Arrived in Australia 1972. Single. No children. Partially disabled from severe osteoporosis, pituitary gland tumor (benign), myopathy and Ehlers-Danlos Syndrome (hypermobile in every joint). 18 yrs caring for my quadriplegic cerebral palsy friend, Rob. Ceramic artist www.sam-davies.blogspot.com

Thursday, July 4, 2013


It's been a little quiet here as Robbie and I have come down with a bout of flu that we have been fighting for some days and I'm only just recovered enough to do some blogging. We are generally isolated but with all the mingling with people recently it looks like we've been picking up some bugs. But mingle we want; mingle we must and mingle we will.
This past week has been the worst in the 20 years of caring for Robbie. All I could do was stagger out of bed to take care of the bare necessities like feed us and clean up colostomy spillages. Robbie could not be placed in care, not even in the hospital as no one can cope with his needs adequately or appropriately even when he's not sick. And it seems every time he's in hospital for more than a few days he comes home with something new. Being so near to his second round of surgery for tendon, muscle and ligament release on the 16th of July the risk of him contracting something nasty at the hospital on top of his flu was too risky. Nor did he or I wish for anyone else to catch it!!
Nor could anyone come around to help as I was in no condition to train anyone. And no one's going to come around at 2.30am to clean up a leaking colostomy (of which two decided to burst this week!!!). The other at some other horrible hour of the morning also. Dramas do not happen during working hours. And paid carers who can stomach colostomy clean ups are far and few anyway. And in most cases they are not legally allowed to deal with such things. That is generally allocated to a stoma nurse or someone with similar training. And his urodome deciding to fall off at the same time as the 2.30am leaking colostomy which just added more to the excitement and the knowledge that a carer like myself caring for someone so severely handicapped as Robbie is all alone at the end of the day.
This is Robbie's first bout of flu since knowing him. It's my first in over 20 years. He only had three colds during all the years living in the heat of the Northern Territory. But in ten months of moving to a cold climate he's had two colds and this flu. Not that we regret our life saving move for one moment we're just not used to being struck with viruses.
Last week it was rather soggy in Sydney what with all the rain. But that did not deter Robbie and I from shopping and then attending a games night. Here's Robbie above - with moose hat - after the games night having spent some time wrapping him and his wheelchair in plastic for our journey home. As soon as I'd finished the wrapping it stopped raining. But kept the wrapping on as better safe than sorry. It started raining again as soon as we arrived home. Two days after this he and I are sick as dogs.
I was suppose to sew a special rain coat for his wheelchair this week but the flu delayed that. Had a lot of important stuff on this week that's had to be postponed. Such is life!!
And for those wondering. Robbie's percutaneous surgery in June for his hip twist has his back and butt in great condition. See below.

Before percutaneous tendon release.
After the release.

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