The NDIS contacted me and arranged for this year’s plan to be made in their offices. They are in Gosford which is a big drive from here. I was concerned I wouldn’t be well enough so I asked them to make an appointment to come here which they did.
Two of them, a man and a woman, arrived at about 10:AM on the morning of the 18th April. I had emailed them an agenda and despite the fact it was a bit of a rant they had read it and were ready to cover the issues. They say they have organized for me to lower the number of assessments to one every two years and I see the politicians are on the radio possibly offering a three year round for permanently disabled like myself. That is all great. One less needless body of paperwork needed to maintain the services
After the troubles last year with the support coordinators they have allowed me to manage my own plan. They have connected me to a charity body with power to make decisions in case I decide to do anything off the plan. It means they have given me the power I need to make changes if my situation or the understanding of it, changes and that is a big relief.
They seem to have organized me to buy the padded drafting chair I was asking for. It will be a relief to get off the stools which are nearly all surviving the period of being homeless all that time ago.. I will wait and see how they have covered it on the actual written copy of the plan before I move towards doing that. The difference between written plans and verbal discussions can catch you if you assume they will be exactly the same. Anyway. I think they offered to let me pay for it an they would reimburse it but I am buried under bills and pretty sure another monster power bill is on the way. The new computer had the wonderful slick drive collapsed so that may potentially cost me an arm and leg to rescue.
LDR Computers at Tumbi Umbi totally saved me with that. The drive failed Easter. As always it was a weekend and public holiday crisis. They removed the drive and put an old drive in. It allows me to get the new drive back to Techbuy for a warranty repair and stay online. The repair drive had to be set up and so far that is hours of passwords and downloading programs. The damaged drive first day after Easter and nothing has been heard yet. I was surprised the drive failed. I had invested heavily in good parts for this machine thinking they are made of high quality components which wouldn’t let me down for a while.
The drive was a two Seagate 2000GB (2TB) 7200RPM 3.5″ SATA-III 6Gbps SSHD w. 64MB Cache/8GB NAND – FireCuda Series
There is some funding to go towards mobility devices and again it is mine to manage although we have discussed what it will cover and I am not going outside the understanding of that.
The present carers will remain as they are if they wish although I know they want to lock me in to weekly or at least fortnightly service. I don’t want that as my ability to stand drawing or writing ebbs and flows as does my strength and I don’t want to have to deal with administrative discussions before I can drop everything and paint. Administrative stress already invades too much of my time
I made a bad mistake in the days prior to their visit. I am sensitive to chemicals and some cleaning products make me ill. I also have lost about two thirds of the function of my heart. I suffer anxiety when people come here. Nobody has been here since the coordinators late last year.
I cleaned! This time I managed twenty minutes of vacuuming at a time before crawling into bed and sleeping several hours. It took three days to do the tiny bedroom and lounge. The bathroom and loo needed cleaning so I used the chemicals. I forgot. With the struggle and the chemicals and only sleeping a few hours in the day when I was exhausted I was sick. When they came to the door all I could see were bursts of light everywhere with vaguely human shapes moving through it. I had to wear sunglasses inside the already darkened apartment to stop my eyes burning out. I was having huge angina attacks while we spoke and I wondered if my heart would stop. It took about three days before that fear eased and I recovered a little.
Anyway the written plan hasn’t arrived yet but hopefully my memory of the day is sound and we have a good arrangement.
I stopped writing and had a break of about a week. The posts aren’t coming out as often for several reasons but the primary one is because I am confused about the way things are going and what I can say about them. My energy and my desire to put things in writing is sapped.
I was thinking this morning of how hard I am saving and struggling to get anything comfortable in the way of furniture. I have no sofa just a computer chair. The bed has a cheap mattress I can only sleep on while the pain relievers work because it causes so much discomfort. The question is why. I had all this stuff. I had good quality furniture of my own including antique chairs and tables several times. It was all lost each time I was driven out of a rental so some investor could have an empty floor to show buyers. Tens of thousands of dollars of furniture lost as I slowly ran of the money to store and move it about the place. Now I am struggling to save again and buy something which will fit in here and keep my pain levels down. This time I was driven into deep poverty and left with no choice but to take a place in social housing. I suffer here. People who have the anxiety levels I have are made almost insane by the activity levels of apartment life and constant distant laughter and conversation.
In the past before the great property gold rush raped our communities there were people who shared things. We put furniture in storage if anyone had a garage they would store it until one of us had a home it would fit. We shared mowers and things. We helped each other. Then we were cast out in a great exodus of tenants. We became tenants. No longer community members and the ease we built by being available to each other was lost. People were driven across Australia as they searched for rents they could afford.
I have to say thank you to all the people who keep my untidy and shambling old body breathing. Without the professionalism of the doctors and their staff, the pharmacists and all the medical technicians my life would be over or truly horrid and I am grumpy man when I am hurting or unable to get my way.
I have a tiny bell. It gives off the sweetest ring. I ring it on either of two occasions. If I think I feel something spiritual and precious is in the air around the place it is a celebration and a welcome. If I am embattled and sick and in pain I ring it so the universe knows even when I am at my lowest I thank them who have helped. Just a couple of rings.
My carers asked me to fill out forms describing what I want from them and what I expect. My answer included the words… like a blind squirrel learning to cross a freeway for the first time….
You get tired of having to be precise and careful all the time. Forget to take medication and get ill. Use the cleaning products and get ill. Get ill from the pain relief as it runs out every few hours. A few hours at the mall means days of limited movement as I recover and the chemicals issuing from all the new products ensures a walk through any store leaves me confused and very ill.
Too long on these hard stools means sciatica and cramps during the night. During a martial arts seminar way back in 1970s they taught us acupressure relief for sciatica and when it is really hurting that technique is another thing to be thankful for. Sciatica hurts a lot so the desperation for relief is intense.
You have to be precise with money or you lose your ability to eat well or pay the next sneaky bill. You need to have all the paperwork done all the time. You need proper identification. It never.
I am not that kind of person and it brings me more stress and dismay. There are days when I am so ill and confused I don’t want to care who I am or where I am but the constant driving demand for paperwork never ends. I cannot just be ill and make a little effort to get a few dabs on a painting. There is always someone who needs me to go where they are and hand them a totally redundant sheet of paper or pay some money. In this part of the world one thing is forty kilometers that way and another is twenty kilometers the other way.
It takes days to get lifts from carers. It takes weeks to get items sent out and I can struggle up to five hours to get dressed and then not sleep all night before simply because I am usually too ill for several hours after I wake up so I don’t sleep. Then the bed is bad blah blah. A new prescription needs to be filled and there is often a problem with that so the six kilometer mobility scooter ride becomes twelve and takes up my energy for two days. Every new thing requires a different packet of understandings and technical terms when I am often struggling to think of simple things like boiling an egg.
This is a long rant. It isn’t long enough. The only way to pass on how difficult it is includes putting it together in as much fullness as I can. There are many things and almost no place where I feel comfortable or safe or am happy with this needy body. Then there are those people who smile knowingly and tell this is what its like getting old. It is not about getting old. I am painfully crippled and very ill and have been for decades and now I have been driven from a safe and comfortable place where I had organized everything I needed to this squalid and sparse little box. Getting old is the easy part!