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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.

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