The Spaz with Pizazz

Hi, all.

Sam's having difficulty uploading photos to my site and has yet to discover the problem.

As for me I'm in a bad situation at the moment. In hospital...again. Vicious cycle. I had just come home after an eight weeks stay only to be taken by ambulance back again after 20 days at home.

I was forced to come home originally as the holiday season was upon us and any doctors (from other hospitals) that wanted to help me couldn't as it's illegal to enter others' territory (red tape must always take precedence over the welfare of a patient it seems). So I was told if I stayed any longer I would have to give up my pension to the hospital, no exceptions. This would result in Sam and me loosing our place of residence as we share the rent and other bills. So I'm sent home on the 19th of December so we don't become homeless and Sam is already burnt out travelling an hour each way by train up to a hospital situated in the mountains (where I was transferred after four weeks) several times a week for the past four. And any home help could only be arranged after the 10th of January. And our main advocate would be away till the 14th of January and a disabilities organisation dealing with my case was also out of the picture till the 15th of January. We were mostly left high and dry and very alone. Sam and I tried to survive till the 14th of January but alas.

So on the 7th of this month, Sam reluctantly calls for an ambulance. There was absolutely no alternative as my lower back skin was breaking down. I could not go to bed as I'd be in too much pain, couldn't eat safely in bed and Sam did not have the energy to put me in and out of bed, up to or over, four times a day. Who on his or her own could? Pain killers weren't working. When I left hospital  originally I was on heavy doses of pain killers and other medications which resulted in dosing myself with at least six cups of coffee each day. Which in turn made me irritable and highly strung. So I stopped the medications as they were not helping much with the pain anyway and were making me very drowsy, thus needing to drink heaps of coffee. Another vicious cycle.

For some unknown reason when I presented at the hospital this time (though it was not unlike the first time to be honest) the doctors said my situation was not medical and they wanted me to go home. Really! I've open worsening pressure sores on my back and it is not a medical situation. Is it really any wonder why thousands die unnecessarily each year from pressure sores!! When Sam manages to upload pictures again he'll post a picture of the blood and plasma left on my wheelchair when the transferred me to the ambulance. Sam has not visited me yet. Seeing me in physical and emotional pain for over 19 years and the doctors with the power to do something about it not giving a damn has finally taken its toll. I spoke briefly to him a couple days ago and he came up to the hospital to drop off some books and small radio and has allowed for him to write this for me.

So, as Sam can not presently care for me, the hospital staffs' plan (which is nearly the same as the old one), is to dose me up on heavy pain killers again. Confine me to a bed in agony as I can not presently sit in my wheelchair. Hope I don't choke on or inhale my food and die from associated complications. Transfer me again to the hospital in the mountains where they are not trained in the least to care for someone with my complex and high needs, then transfer me to a care facility located not so conveniently within the  same mountains. A care facility apparently situated on a steep incline so Sam may or may not be able to visit me as he can only go places if he takes his electric mobility scooter which might not manage the incline. We escaped from Darwin where it is flat. Not like NSW where it is mountainous in many regions so Sam, some years ago, naturally ordered one for Darwin's terrain never realising he would have to permanently leave his home of 38 years. But since Sam is so exhausted now from my last hospital stay there's not much chance of me seeing him, he tells me, even if the landscape was as flat as a pan cake.

But all this is not going to happen, Sam assured me, as it is a waste of both our lives and time and our advocates will be back soon from their holidays so hopefully the doctors who wanted to help still do and will.

On the other side of the coin some doctors wish to see me institutionalised. Charming!!! They do not see the problem with being confined to a bed away from those I love (and my precious dogs) doped up with pain killers that will eventually cause organ damage and already cause complications. And who cares about loss of privacy not eating the foods you need and want. Nor the need to be very quiet all the time so as not to disturb fellow inmates who're literally only separated by a thin wall. Toe the line and don't rock the boat and don't let people know you can have a productive life if only those with the power would allow it. As I said to doctors some weeks ago, I do not mind going into permanent institutionalised care if it were necessary. But it is not necessary. I am hanging out to see doctors that really understand cerebral palsy. Not ones that presume to understand and think they know best for both the individual with cerebral palsy and his or her carer/s.

Please!!! I want to live. But not like this. The constant pain and fear. I'd prefer to be dead. I want to be dead. For those with iron stomachs feel free to click  "HERE" to see why. The pictures are graphic and show what happens when I go into care without Sam literally visiting me nearly every day to advise over my care. Again, I warn, they are "GRAPHIC".

Sam will post again in a few days time. All the best to all. Stay tuned.