Snakes visit. Gas cooks. Pencils draw. Brain stumbles. NDIS still aint right


A similar butane stove

The battle to lower the power bill continues. The electric stove has been out of use for a few months and the little cooking which cannot be escaped is being done on a small butane camp cooker. There is a stove-top, whistling kettle, in the mail somewhere between here and China. There is also a thermos which will hold the morning’s hot water to be be heated all at once then stored until used. It has to make a difference! It might be useful to change from milk to a powdered milk so the fridge isnt being opened and closed all the time. Then I have to find even more money and change the stereo over to a battery radio. I listen to that all day and night. It is often the only human contact for several days and I am not letting  my quality of life dissipate entirely. There isn’t much left to be ruined!

The kettle arrived while I was thinking over what to do next and has been tested but isnt in use. It works well but I think it uses too much gas. The little gas stove has made patties for hamburgers and stir-fries and is infinitely better than the old electric stove. I like gas for cooking.

I didn’t get back in here because I have been finding a few things to tire me out. There is the task of being a moderator on a pen and ink drawing group on Facebook. That can be a little tense at times but it is mostly a passing parade of artists and interested parties from all over the world and the constant surprise and delight of the work they upload.

The drawing space as I finish an exercise in drawing flowers in week four

There has been a lot of time being given to a university course on natural history illustration. That is also very intense. It is online and the group consists of capable artists as well as newbies and it is fun seeing how everyone faces the challenges and what they produce. I am largely self taught and this is a technical course with many of the things I needed to know to get my work looking stronger. A lot of it is how to draw field journals but also how to get the essence of what you are illustrating down on paper. I used to have a very strong technique but after the head injuries, down time and heart failures, it was a struggle to do simple tasks. This has been a constant subject in here already so moving on.

Speaking of head injuries there has been a lot of time seeking advice from various mental health professionals as to why the problems have been so savage. I have known why but it had to be noted and diagnosed and reported by professionals. A few days ago the neurologist gave me a report of tests from several of them. There is obvious damage that indicates multiple concussions and other forms of harm. There are indications of damage from lack of oxygen because of heart failure. There is a lot more but one point the neurologist seemed very happy about was the fact in that chaotic mess there was no sign of dementia. I think her specialty is dementia and I had wrestled her off onto some side paths she wasnt initially expecting or happy with. She was absolutely wonderful though! Oh yeah. Just a funny note. They discovered at times my IQ is as high as I have said it is but at other times (because of the brain damage or oxygen depletion) I am an idiot!

My mother was caught outside her apartment during one of the huge downpours and as she approached her door she saw a snake slide through the water and into the laundry through a hole beside a brick she didn’t know existed. A while back she had a huge python going to every window and glass door and testing them by crawling as high as it could while she stood just inside the glass with her skin crawling. She doesn’t know what kind of snake the most recent was but it had a bright yellow belly so it was probably a tree snake rather than a brown or tiger snake. Her retirement village is notable for the number of snakes carried into laundries in the washing baskets. It is a constant theme. My mother could not find the snake inside the house which is spooky but says there were noises in the roof. My uncle lives not far from her and he found a massive python near the house and decided to do his own snake wrangling. The snake got mad and wrapped him up. It took half a dozen locals to peel it off before it choked him to death. Very close!

the Clematis climbs the front and fountain grass begins to grow in the big pots

The pain relievers in use have not been working properly. I have been concerned I was becoming immune. They stopped working after about half the time I expected. The drop off was brutal and far worse than I am used to. Normally I cruise off them after several hours and put up with pain. This time I was almost hunched with pain long before they should have been stopping. The brand was changed and some of the extra discomfort comes from the big weather changes at this time of year. Some of it may be chemicals in the apartment. Whatever it is the rest usually between the weather extremes hasnt eventuated and it is a concern with what we expect this summer

NDIS. I asked my Support Coordinator to get me a drafting chair with some padding on it. Basically one of the normal office drafting chairs. What I have is a hard plastic stool and it causes me immense pain after a very short time drawing on it. There is almost no other seating in the apartment than wooden stools and one office chair. She told me I had to either have one of the items available from the mobility store or something NDIS approved unless I had special dispensation from an occupational therapist, after an assessment. Now we did assessments and it took about four years to go through all the things they wanted to do to try and fix me and discovered din’t work. Then they (pre-NDIS Aged and Disability Support Services) recognized my need to lessen pain by using softer chairs and better supports. They assisted me to get a bigger bed and the softest single lounge chair I have ever seen. All of that was left outside because as always the furniture we buy for one place doesn’t fit when we cannot get another place with a decent room in it.

When NDIS came in and ADSSI dropped me I came into the hands of Just Better Care who sent in an occupational therapist. That person began exactly as the other one did but without the years of data gathered by ADSSI. They made me like a guinea pig for their lack of information or understanding and smilingly started to work their way through all the non-productive things ADSSI had done in the first months of their seven years of caring for me. The Just Better Care occupational therapist left me frustrated and angry and I politely maneuvered them out the door. Just Better Care abandoned me when it took me too long to get back to them over the yearly contract roll over so I engaged Central Coast Primary Care who made all the same suggestions we wasted time with way, way, back when I first started having carers. I disengaged them and went looking for new carers.

Eventually I asked Aged Disability and Support Services Inc. They made exactly the same suggestions that had failed and wasted months all that time ago and by now I am sick of going backwards through the ignorance of my carers as to what I need. I fired ADSSI and left myself with the most limited service I can manage to keep those other things I mentioned in earlier posts such as transport to get me to medical appointments. I have no support co-ordination and any items I need to look after my pain relief are going to be out of my pension and obtained by me. The carers I had take me out would stand with their hands clasped in front of them while I had lunch and after they had refused to eat or have a coffee with me. Outstandingly rude and no social help to me at all! With me doing all the work and paying for it out of my own pension I dont need an NDIS support coordinator so I want that deleted from the plan unless I pay me to do it. I am sick and crazy and confused but still better than what is on offer! I am probably not the best person because I also realized that all this paperwork expected of a handicapped man is ridiculous and beyond me to even care about!

I asked NDIS to give me a renegotiation on the plan as we are almost through the year and I havent spent anything. Not because I dont need to but because I cannot get what I want. When we go to reassess my plan it will look as though I dont need anything when instead I have had a brutal and confusing year. I will call today. I dont want to. This is always a bad time for me and I cannot remember what I need to say! This needs an edit when I am not so tired. It is always obvious because some of words dont seem to me to fit together so the things are a bit scattered.

The phone call to NDIS yielded a very capable girl who could type like the wind and helped me ask for the review. She put together the wording from my stumbling conversation and made a very capable document asking for a review and the chair. We will see what comes of that

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