Lived Experience Forum

[ClockFace]

I will be so relieved when my NDIS application is officially approved and I start receiving the supports. I try not to think about it but my life has become so, I dunno limited, so boring. I spend the majority of my days at the moment are spent at the kitchen table writing or working on my budget or meal plan, while I watch streaming media. Last year I at least had heaps of doctors appointments, while at the time the money I was spending and the amount of time they were occupying felt like a huge burden I was out doing something. Now, I am stuck at home, I go into the shops most days briefly but thats about it. The most exciting thing I have going is the new office being built for me because I will have my own space.

With the NDIS coming on board I hopefully will get the support I need to start doing stuff that isnt limited to watching TV. Im hoping they will support me trying model making. Its something I have thought about for years but never been able to afford or justify the cost of doing. I think it would be helpful for my anxiety and to help keep me calm. Id like to do model planes and cars but also looking into it I think Id like to do Lego models too. As a child I loved playing with Lego, this would be a lot different but very enjoyable and very involved. The office area is probably going to be even more important now, if they agree and support doing the models it will give me somewhere to build them and later display them. The only problem I foresee is with the Lego models, it might take a bit to get the money together for some of them. Id like to do some of the Star Wars ones, one Id love to do is like $1300. I doubt they will come at that.

There was something else I wanted to do hobby wise but for the life of me I do not remember what it was.

The new office area has been built, on the other side is  a small mud room. My office is pretty big, Ill have room for my home office, my personal office and an area to do model making etc. There should be enough room to have an area set up for personal care. Cause of my pain issues, I cant stand in the bathroom to shave, do my hair etc. I have to sit down to do it.

They have one cornice left to do and the electrical. But they have to paint as well and thats the issue. They will be painting the whole house eventually and the colour they paint the office/mud room is the colour the house will be. So, Mum has to decide on a colour. Which means that Dad has to get sample pots of the colour she choses, paint a little and then we have to try and get Mum to come down and have a look and hope one of the colours is suitable. If not, she will have to select some more colours and we will have to go through the whole thing again. Apparently, all the colours are supposed to have a green tinge to it, the colours on the wall that have been done so far, none have any kind of green to them, in fact  one is freaking purple, so the next problem is has Dad even got the right colours, which even if he has, is going to be an argument. I just know that the colour selction process is going to be one massive fight. Dad wont make it easy, he will try to stop the fight and in doing so he will omit stuff and twist things, that will make Mum suspicious and she will get stuck on that rather than just choosing a paint colour. I just know that this weekend is gonna be really frustrating and it doesnt have to be.

We have a full size freezer and a large double door fridge freezer. Why we need to have so much frozen food is beyond me but there you have it. Add to that, Mum has a single door fridge freezer for herself. In the main fridge I have a shelf and a section in the door for my stuff and I have a large drawer and a small drawer in the freezer for my frozen meals. They are supposed to be left free, just dont put shit in them, even if they are completely empty, leave them because I have monthly orders that come through. Mum did a heap of shopping and instead of sorting it out it was put all through the fridge including my shelf and my door section. I had to rearrange it all so I could put my food for the day into my areas in the middle of the night (often when Im awake doing that shit). I just went to get a frozen meal and the big drawer, which I had emptied is not full of the stuff that was in the fridge that has now been frozen. I asked Dad where am I supposed to put my meals now when they come in and he said that he will move the food to the big freezer. Why the hell cant he just fn start there, because I know damn well that Ill have to move the food when I get notification that its on its way because he hasnt. I went through and cleaned out and organised both freezers and the fridge and the big freezer is now a mess again. There is an area for his frozen meals, his are store crap, mine are dietician made type, but now there are multiple areas because it was too hard to I dunno, tidy up once he had used a heap and was replacing them.

Its so hard, I know what I am using month to month, how much space that needs, how much it will cost, etc. So I know the area that I have set aside is what I need and all that I need. Which is why I get annoyed when he and Mum who have all the rest of the space, which is a huge amount. I dont understand how you can be so disorganised that you cant sort out that you have x amount of space, so I can only purchase so much stuff. Mum has this habit of buying marked down, near expiry food to freeze or finding something she likes and buying a massive amount and then getting bored of it and having an excess either go to waste of sit in the freezer or pantry until it expires. So much food is wasted in this house. Personally, I only waste food when I make a shake and dont eat it because Im not well or my depression is bad and that bugs me, but Im talking $5 worth every now and then, not $100s on a regular basis.

I dont like wasting anything, sometimes I try something new and I dont like it, if no one else likes it and its not saleable and Ive exhausted every way not to waste it then Ill throw it out. I wont use or eat something I dont like so I will discard it and not buy it again. Dad will use/eat what he doesnt like so its not wasted, I think Im worth more than that. I also buy enough of what I am using/eating to last a specific amount of time, so if I get sick of it etc I dont have to keep using/eating it forever before I can change. Mum buys a massive amount and then drops it with no regard, but despite being separated Dad pays for the most part of the food etc for them. In fact he pays the most part of everything.

My sister has bled my Mum dry financially and helped do the same to my Dad. Once they stopped agreeing to give her money hand over fist she has bailed on them. Mum cant understand where my sister has gotten it from. But she does the same damn thing to my Dad. Mums on a pension, she has super but refuses to use it, barely contributes to the household expenses, determines how the house will be renovated, the colour, styles etc and Dad pays, etc. etc. I really hope when Dad’s super etc is gone that Mum doesnt demand that where they are living at the time is sold and she gets her ½ and then she bails on him.

I have started showering at night, Ive been putting my day clothes back on afterwards. I generally sleep in my boxers or the track pants I have worn that day but I decided today that I should start wearing PJ’s, they are essentially light track pants but Im wondering if there might be a psychological thing that tricks my brain into sleeping longer because I am more dedicated to going to sleep. Seems a bit of a long shot but Im willing to give anything a go at the moment. Plus its a bit of a mental separation between night and day for me. Its getting a bit of normalcy into things, making sure I am not sleeping in the same stuff I wear during the day at all, which I have done pretty well all my life.

I just had to deal with Telstra over a couple of things again, this time I have come away just furious. So I got a text telling me that my bill had been paid, then a week later I got another text saying my payment had failed. In between the two I had used money believing that it was not earmarked for anything. I rang and agreed to put the bill at the end of my contract because I didnt have the money to fix it up. All good. I also asked if there was anything I could do about my bill to lower it, reduce the data for instance as I am home all the time now and only using WIFI. Sure, we will drop it to 20gb a month. Turns out neither of these things happened. I used the messaging service to follow up and got no where. Again this month, notification that account is paid and again a message saying payment had failed. I hadnt completely followed it but this time I was well grumpy about it.

I messaged again as the call centre is closed, for the life of me they cant understand if they say something is paid they cant then bill me for it again without notification and some kind of explanation at least but even then thats a stretch. I said about the data reduction and they said they can only do 50gb and the reduction to my bill is next to nothing.

I ended the messaging, which took some doing, they wanted to root around when I was willing to talk to them, now Im not and making a formal complaint to the ombudsman they are offering to help me make the complaint etc. which I dont trust for a moment that they would follow through on because so far they havent with anything they have said they will do. Hell on a corporate level they lie, the say an account is paid and then later that its not, even after giving a receipt number for the payment. Its just deceptive. If they hadnt said the bill was paid then I wouldnt be complaining, but they screwed me over, they have made my financial position worse by miss stating the status of my account.

So I made 2 complaints with the ombudsman, Im thinking about making one with the ACCC. It should be a rule that businesses can not notify that a payment has been received until the processing of the payment is complete and receipt of the payment into their account is confirmed or guaranteed. If a business advises that an account has been paid, by any means, they are no longer able to request the customer to pay this account if the payment fails for any reason except for malicious intent on the customers behalf.

Hopefully the Ombudsman sides with me, I want my last two bills waived and my data reduced to 20gb to help my financial position. Im not asking for compensation but in many ways I think after my discussion with them today I think I deserve something, a discount on my account for a period of time, say 3 months or a credit to my account. Its not so much that I think I should get something, but I think Telstra should be penalised for being deceptive and putting their customers into financial difficulty. Many customers would be struggling to pay their bills, like me and its easy to not realise a direct debit hasnt come out and spend the money.

I feel like I am in bed a lot. I rarely go longer that 8 hours or so without a nap. I only sleep for a couple hours at a time at most. Works out that Im getting 3-6hrs a day over 2 or 3 stints in bed. Its not at all restorative though as I dont go into deep sleep or REM for the most part and my O2 stats drop between 73 and 84. Im pretty well exhausted all the time. But Mum is sleeping so much. She goes to bed around 3am and we start trying to wake her at 10 (her request) for her medication. Often lately its around midday that she finally gets up. Then around 3 or 4pm she has a nap and wants to be woken at 7pm. That fight usually goes until 9 or 10pm. When she is awake she complains about being tired the whole time.

I get that she is depressed, but Im amazed at how much she can sleep. But I am pretty sick of the fight to get her to wake up when she asks us to, its not fair that every 30min or hour we have to pick up what we are doing and go down and argue with her to get out of bed. She isnt pleasant about it normally either. We are waking her to take her medication and you would think we are torturing her some days. I dont know whats so hard about waking up and taking your meds and if you’re that tired laying back down to sleep. It would be nice if she would take us into consideration a little bit. Like there has been times where Ive been trying to wake her up for her medication and Im telling her Im the only one awake and I want to go to bed because Im stuffed and she still wont wake up. I ended up falling asleep at the table last time I was that tired.

I ended up speaking to Mum about it and you would think that I had told her that she needed to stop a natural bodily function. She was really annoyed that I had an issue. I said that she needed to do something about it, that it is becoming a problem that we have to come back and forth multiple times, multiple times a day and that she was quite mean about try to wake her up. She snaps and is grumpy about it almost every time, given we are only waking her up when she has asked us to I dont think its fair. I should have to go back and forward over the space of a few hours trying to wake her. I said about having to stay up late and falling asleep at the table and she treated that like, so you should. I have a sleep disorder that they are finding hard to treat, I dont need Mum forcing me to stay awake because she doesnt want to be mature and wake up. I understand that she is tired, I get that and I get the depression side of things but there has to be some boundaries to protect Dad and I, especially if she is not willing to see a psychologist and/or a psychiatrist to get treatment.

Im a big advocate for people being treated, both therapy and medication. In my opinion, one doesnt work as well as it can without the other. She doesnt see anyone other than her GP, who I dont think has a huge mental health background and she regularly changes her dose of anti-depressants depending on how she feels, which is part of the reason I dont think her GP has much of a MH background because thats not how it works.

Im also a big advocate that if a person refuses to get real, proper, treatment then there needs to be boundaries in place to manage and protect those around the person. Even if there is appropriate treatment in place, there should be boundaries. Boundaries are important and severely lacking in my family, particularly when it comes to my Mum and my sister.

Over the past few years I have started to use boundaries a lot, I never really used to because Mum (and my sister) would have just bulldozed their way straight through them but I changed and started to, I dont know, I grew a backbone maybe. Its been a rough adjustment, where I would say no to something and would actually stick to it. I didnt run away from stuff, I didnt put up walls, I just said that here is a line and if you cross it then I will respond in certain ways. My sister has put up walls and run away, not put in boundaries.

Mum doesnt react well to boundaries, she doesnt react well to being told no and being given limitations. She wants to do and act how she feels at the time and people around her should just accept thats the way it is. In many ways I see her as an undisciplined child. She has gotten away with it for years too. Everyone is too  scared to stand up to her, to say no and stick to it. She makes it hell on Earth if you say no and stick to it, she will argue and pester and fight constantly with you, wearing you down until you give in. I dont, but I also dont stick about for her to talk to me, to fight and argue me. For a long time my motto was no and shut the door. She doesnt leave her room, what is she going to do? She would make life hard for my Dad and Sister, who in turn would get mad with me, which I get but at the same time, have my back. But they dont even have their own back, how can I expect them to have mine. My sister isnt much better though, she will do the same thing. Difference is, no one is scared of her, they are scared that Mum will support her and throw her weight around.

Its been a really bad night/morning, I went to bed at 8ish last night and woke up again at 11pm. I came down to the kitchen and promptly and repeatedly fell asleep at the table. I eventually got up and saw Mum, did a few things, sat down and again, promptly fell asleep. I woke up and again did some stuff and then I fell asleep again. Its 5:30am and Ive been up for a little while, the day is about to start so Im loathed to go to bed now. My routines start at 6am. I might do my morning stuff and then have a nap.

The challenging thing is I dont know Im tired enough to fall asleep and when I wake up I tend to feel ok, like I dont need to sleep.