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

Sunday, July 28, 2013

Three days after more tendon release between legs on the 16th of July, 2013 - same tendons as my last release performed early last month- but not at the top of legs as agreed and discussed with the surgeon. I was not happy that my informed request for the tendons at the tops of my legs to be release was ignored again purely because of some being concerned over a short femoral nerve and short blood vessels which we've been over and over before.
The major muscles controlling my lifting or lowering of legs was instead partially cut which is good that it has now stopped the contractures forcing my knees up under my chin. But the tension/spasm - and pain - in my unreleased tendons is incredible at times; especially in this cold weather. I see no reason why they could not have been release even if it be very slightly. Sam, my carer, still can't access adequately my crease areas to clean me easily without causing skin damage and a lot of pain pushing my legs downward.
Above: before tendon release. My legs could not be moved sideways or spread unless causing me intense pain. The contractures would even crush my penis and cause it to have pressure sores. That problem's now gone. I can be cleaned easily between the legs also.
This is me laying as far back as possible in my wheelchair without causing pain in the uncut tendons and the cut muscles at the tops of my legs. My wheelchair would allow me to lay almost flat like a dentist chair. But my legs do not straighten enough to take advantage of that facility. All my physio can be done in my wheelchair at the moment due to the inability to straighten my legs at the hips.
Thursday 25th, day after Sam takes me home. My lower legs and feet are causing all sorts of trouble and same problems. But still the surgeons do not wish to remove my legs just above the knees (as recommended by a well respected world leading orthopaedic surgeon) to give me freedom from pain and allow for mobility. Before leaving the hospital one doctor actually said it was not important that I roll in bed independently!! But it's ok to be totally reliant on others for everything I need and keep me feeling guilty and trapped, apparently. And though all the doctors know I have no balance they keep saying the removal of my legs would interfere with my balance. Other words, some do not want to know the full extent of my physical limitations or possibilities.
Fortunately, there are surgeons wanting to help me. Unfortunately, they are private and are not at present allowed to touch me. I have to go through all this suffering and pain and imprisonment to make sure I don't suffer more pain. Well, that is my decision; could I really be in much more pain physically or emotionally. I'm 40 years of age and one would think I know what I need by now. I've seen my life taken from me due to my legs preventing me accessing mobility and pain restricting most of what I can do. It's better to take risks than spend the next 40 years a prisoner to my legs!!! I want to live but I can't live like this. I refuse to live like this because it is simply not necessary.
I see the surgeon again in six weeks time for assessment. I've been given the impression that nothing has been ruled out; it all depends on how well my tendons respond to physio. I respect that. I just so desire to sleep in a bed independently and free of most of my pain; be mobile; play on the floor with my dear dogs; and use a walking frame a bit.

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.