July update and my battle with asthma

Life is not all bad and many things have changed. I had a Division 3 win on Lotto.

My memory is so bad. Please change doona to duvet. I will get in and do an edit later

I may be spoiled but I thought something like a Division 3 win was almost a once in a lifetime thing and I find myself disappointed it is only $600. It prompts me to move to another way of having a flutter where the chances of a win this size are better or bigger. It would seem to my mind Lotto is another one of those things governments are stripping for every penny while excusing themselves somehow.

NDIS representatives called me a few weeks back and discussed the banking situation as well as the delivery of documents. When my machine crashed and there were no printers. You may remember it from the last post. This representative was very positive and agreed there was no point in the slavish adherence to some elements of the red tape. There are a number of items I have to buy with actual money outside of the system and the hold up was their ability to repay my account when they were so intent on stopping the flow for every excuse. I will test that as soon as I have enough in the bank to purchase the new chair for my back. So far other funds I have been expecting for past plan activities seem to be unavailable so I am uncertain and not expecting much.

I have been endowed with budgets for business operations and the way this keeps collapsing under every tiny pothole is very disappointing.

I have engaged two NDIS care providers. The one I have been using has a signed contract but after all the tension and being left in the cold without services over a slow mail I am uncertain about using them. It is another element needing to be tested and not expected to be satisfactory.

The new provider seems like a good group of people. They sent a carer to transport me about last week and while we were out I had her deliver me to their office so we could sit and discuss things as well as get the contract signed. This was what I would have expected from Accuro. Rather than leaving me with nothing, without warning, they could have made a plan where the carer delivered me to the office and was paid because the contract date would cover that service.

I am finding the new contract to be a bit clumsy. What I need is unscheduled visits to places where I can find artworks and people involved in art. Then I need transports to medical appointments and the hospital and what I have is a regular fortnightly or weekly service. It is my job to bend it to suit my needs and recognize the limits. Like a lot of new situations I am finding it confusing and frustrating but with practice it will improve. The new group seems willing and able so I am hopeful.

Clematis cultivar 148 imported by mail from the Clematis Nursery in Tasmania and added to my garden in order to provide a shaded wall where before the sun was intense. It is not really a hot weather plant but is surviving and thriving

While we were out and about the carer and I went to Boating Camping Fishing (BCF) at Tuggerah and had the small butane heater exchanged. Their staff was very nice and friendly so we were through that without any drama and the heater is here beside me.

I thought, at this point, the support carers had made an agreement with me to turn up at a certain time every Thursday. I object to having Thursday services as it is pension and many pay days. It seems crazy to be forced to join long cues and use crowded parking areas when the rest of the week things are almost empty and I am being caused so much distress by the extra standing and walking. Anyway, I rang the company a few hours before their worker was due to arrive and nobody knew we had an appointment, the guy they put me through to had no idea what was supposed to be happening and could not ask anyone as his boss was on holidays.

I cancelled that day and was amazed when they started calling me a week later asking what I wanted to do. I am back in the grip of the dismay and confusion when I needed this part of things to be working like a machine. I am too ill to work this out so have just cancelled until I can face making some sort of decision on people who seem to be unable to turn up even to the first few appointments. They also told me they wanted to make plans on regular services and were unhappy with the irregularity of things so far. I might as well have spoken to a post. So here I am back in poverty hell.

I had written-The butane heater isn’t quite as I was hoping for and very dangerous to use inside but it has taken a great deal of the brutality of the cold nights away. It is used on a table quite close to me and only runs until it warms through my clothes. A few minutes at most. The heat is wonderful and brings me a lot of comfort through hours of a freezing night of insomnia. For those who worry the windows and doors are never closed here as there is already quite a load of chemical fumes before the little heater adds its monoxide. Also to be avoided is getting too close. The hot burning face of the heater will fire up the polyester in some of my coats very easily.

A few weeks later the butane heater is unused. It heats for a few minutes then begins to “gutter” or to lose its heat and make popping sounds like a small motor. It appears to be in distress and is too dangerous an object to continue using. Several nights have been brutally cold and I cannot force myself to shower more than occasionally

There is a plan to purchase a medium quality air purifier to run in here. If they run as advertised it should mean there is no need for the surgical mask and I can close a window or two when it gets really cold. Nothing else runs as planned though. I doubt I can afford more electricity

We went to the Motor Registry at Tuggerah to renew the Disability Parking …er..”thing” and the staff there were really helpful. They have changed their practices to recognize some of us are in medical situations which cannot improve so the forms do not have to include new doctor’s certificates all the time. That was one of my primary irritations and it is a good thing to be free of another source of paperwork.

There were a few small wins in the apartment. Every night I had been fighting overwhelming asthma. It was bad enough so I regularly went to sleep fearing for my life. It stressed my heart and stole my strength even more than all the other things which crowd into this life.

The goose-down doona had been dry-cleaned every year for at least half a decade and was ten years or more old. The parts of the down had broken and were filling the air with dust. Worse than that was some of the dry-cleaning chemical residue remained in the down. That stuff destroys me and not only kills my ability to breathe but attacks my other systems. I hadn’t realized how bad it was. One night I sat down with a full face anti-chemical mask. After wearing it for two hours I could breathe almost normally and up till it was taken off I had the clearest breathing I had experienced in many years. It not only indicated the goose down doona was a problem but clearly pointed to the chemical load and the dust in the apartment as culprits in my constant ill health.

I threw the bedding out. I have spoken before about the new down cover and while it is new now it will contribute to the dust as it ages. I started wearing surgical masks when I sleep and have put my face right beside the big open doors so the chemicals are drawn off before I inhale them. The combination of fresh air and surgical masks has given me a freedom of respiration I have not known in years and ended the scary cycle of massive doses of steroids and desperate struggles to breathe which have been going on for a couple of years. I thought the masks would be an annoyance but I find them reassuring as they keep my face warm in the icy night temperatures

I have gone back to using a hot water bottle. The one before this burst and came close to burning my feet badly so I had changed to a bag of some sort of grain which was heated for 2 minutes in the microwave. The bag cooled really fast and was useless after about twenty minutes. The water bottle retains some heat and helps my feet’s lack of circulation to cause me less distress. I know people don’t like hot-water-bottles anymore and they can be dangerous but the cessation of more big pain and distress centers make it important for now. One thing I will do is to throw the HWT out at the end of every season.

Having warm feet seems to provoke fewer nightmares too. That is something I appreciate!

I wake in the morning feeling human rather than being a mat of pain and discomfort.

Meals can be sparse. When I am weakened or struggling with confusion I may make something like canned corn beef on crackers as a meal. Sometimes there is nothing like a formal eating period rather it is just a handful of grapes, then a wait until a mandarin, a while later a banana, then some peanuts, yoghurt, crackers. It happens because I cannot remember if I have eaten and am too tired to make a meal. Some meals are supermarket meat pies and microwaved single serve vegetables with a soda as a drink. Sometimes I forget I have eaten and eat twice in a session. I was eating the pre-made TV dinner kind of affair but the serves are small and it is an art to heat them without destroying the quality and look.

 I don’t know if I should be worried. My meals seem to be about the same as most people I know manage to make. The single people anyway. It is just the diabetes is bad and even were I able to exert good control over things there would be high blood glucose readings. I think I have written about a friend who had their foot partially amputated a few months back for the same reason.

 One of the passing parades of support coordinators gave me the menu and plan for the local equivalent of the meals-on-wheels thing but after reading it the need for more documentation and regimentation made my back ache so it was never a serious contender. I might get a pizza delivered though. I crave Chinese food but I am unable to discern one which delivers to here for a price a single person would want to spend. The little Noodle Hut at near here makes delicious meals and has reliable deliveries but it is too expensive for me to do often.

Mmm, talking of food and having won all that money I think a celebration is in order. A pizza will be nice. There is a small bottle of New Zealand Montieth’s Black beer in the fridge. My favorite! It’s early yet and food makers aren’t open but if I can hold an idea until lunchtime I will get one.

I am looking at the Domino’s Pizza online menu and finding it very difficult to use. It must be set up for phone or something. It required two calls as the number supplied online goes to a branch at the Entrance without delivery to here. The staff at Mingara where I ended up ordering is good. Loaded Supreme with crispy crust and squid as an extra. No drinks.

From the “High Priests of Mammon” series about the destruction of communities by property investors. This one shows how few places there are to make images in the apartment.

I know I whine a lot. I am working on several large paintings after finally breaking through some of the mental blocks. It is breaking my heart to have good ideas and yet be trapped in a place where the exuberance and texture of the work is lost in a tiny crowded work space. Life is passing and the chance to produce beautiful and complex ideas through my work passes with it. That is the crime in this version of our world. All of us who live in a low income world are cast aside and our potential to create new cultural offerings and paradigms lost in the flurry of the economic feeding frenzies of a few. It really hurts and takes the joy from existence for me. Life is not about me being happy or having enough food. I have been happy being hungry and making art although now, as a diabetic and cripple, it gathers all this neediness and denies me simplicity of a productive existence.

My mother seemed to need new batteries for her mobility scooter so I sent the Lotto money to her to pay for them. It was repaired without new batteries and at a very low cost but I have heard no more about it. She was getting some sort of sunshade or something built for it and I told her to use the money for that but have had no feedback. I hope it goes well. She depends on the scooter for the little mobility she has since the car was removed

I have been listening to Jordan Peterson a lot on YouTube. He is an amazing speaker. The media often hate him, especially the Australian media, because they depend on getting us to look astounded or frightened all the time and he teaches stability of mind

Watched the 35th annual Portiers talk where a woman called Nancy Isenberg spoke about the history of White Trash in America. I am struck by the notion attitudes she describes toward the poor by early American do-wells are now directed at us here in Australia. I get very angry about it. There may be some people here who come from that pot of ne’er do wells but also among us are people who had every chance of producing creative works and building small incomes until this cycle of greed left our politicians with portfolios depending on ripping rents until we were unable to live in our own communities without welfare.

Watched a special by CNN about “America’s New Poor” (all on YouTube) and was further certain we face global destruction of many levels of our societies while affectations of class superiority between have’s and have-not’s grow back. People should be fighting to stop it before we end up back at the eugenics space. In the light of climate change and massive population growth eugenics is something probably already being considered among the globe’s leaders

Noam Chomsky is another academic I have been listening to and enjoying a lot lately

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