Oops, thirty five new alerts on checking PR this morning.
Most of my involvement in disability politics in hospital will have to wait till I get home and full internet access. I am making notes though, and intend to send off like a hundred emails. What I discovered, surprise surprise, is that disabled hospital inmates can be relegated to second class citizens. Its not the nurses, docs or other hospital staff, its institutional failure in how things are designed, a subject which will be a big part of my book.
Politics features heavily here now. The illustrious Premier of our state, Campbell Newman, is using good engineering principles to slash and cut state expenditure. The problem is a state is not a machine. Oh well. In any case I was moved out of Logan hospital in part due to them being told that half the operating theatres were closing, many of the nurses were having their contracts ended, and twenty beds were lost from the hospital. The day I moved out was two days after the "deadline" for closing the twenty beds, and they were scrambling to find places to put patients. Since I was doing OK I got sent to a small country hospital - its a nice place but lacks modern infrastructure ... why can't I use hospital wifi? The answer is simple - they only have enough capacity for the doctors.
I finally found where notepad was hidden on my computer so now I can write longer messages then cut and paste.
My local physiotherapist is muttering about graded exercise, though she seems unaware I have ME and I do not stress the point. Four days before I broke my leg, 21 feb, I was crashing so took a second resveratrol. Next day I was fine. Then the day after. Then the next one. Then I slipped on a wet tile floor while helping my shopper bring in my groceries, and so fast I did not know what was happening I found myself on the floor with my foot at a funny angle. The first thing I said to my shopper was "I think I broke my leg" in a calm voice. There was minimal pain, but I started passing out (shock/OI) and had to breath heavily to stay conscious.
I can confirm that for the most part having ME is far more painful than a broken leg. Setting my bones under painkillers was worse than most of my pain with ME though. However I got lucky with surgery - they thought I would have to wait a whole week before they could operate due to swelling, but I had little so got right into surgery. They tried a spinal injection for pain but kept getting it wrong and it was exhausting me so I asked to be knocked out. They put a plate and several steel pins in to hold my bones together - they were a bit shattered. On morphine I had almost no issues with my foot, and only a couple of times asked for increased pain meds - mostly I was about reducing the meds as fast as possible.
Something funny happened in recovery when I woke up. I was disoriented. I looked around at the sterile looking hospital room and was thinking "I don't recognize this computer game." I couldn't even find the mouse! Then I figured it out. The recovery nurse had a good laugh when I told her.
I have been assessed every which way. Occupational therapists, social workers, physiotherapists, orthopedic surgeons etc. In one medical history I mentioned ME, but this got translated to CFS in my notes. They don't recognize ME. However I have been downplaying diagnoses and focussing on issues. They assessed my capacity to cope in a full cast from lots of perspectives and decided to keep me till I could put weight on my foot. That takes six to ten weeks. I am hoping for six.
My point is writing this last bit is this: when I get home I will get an additional review (social/OT) to make sure I can cope, have groceries, etc. I will get options for home delivery of meals. When will this be available to ME patients? When do they get ANY practical review? When is it going to be recognized, in practice and not theory, as a highly disabling condition?
Things need to change. Things can change. We just have to figure out how to make it happen.