Skip to main content

Re: I dont know what to do

Good luck with your tests, I hope the new meds work out for you. Hope you get some sleep too.

 

deshift

Re: I dont know what to do

I havent been writing as much as normal as I have been a lot more occupied than lately, setting up apps but also actually doing stuff. Im currently in the process of going hardcore on my room. Anything I havent used and am unlikely to use is either going to an op-shop or a bin, I dont care which really. Im doing it bit by bit, like Im doing my drawers at the moment and its one at a time.
 
Im also incredibly frustrated, like beyond belief frustrated. My Mum cant come up and get her own milk, meals, toilet paper etc. but she again has left for the doctors and 4 hours later she is still in town making her way through op-shops. I dont care that shes in an op-shop but if she can walk around an op-shop for hours at a time, shes clearly not so sick that she cant take care of herself. She is just being abusive and selfish and its got me wild. Not to mention the car. The idea was I wasnt to get another car as I would have full use of hers, now without talking to me and letting me know whats happening, shes taken off in the car on Thursdays. Now I hear she has an appointment on Monday and there is no entry into the family diary or anything. In fact Im the only one thats using it, so Ive deleted it and cancelled the subscription. Im not paying for something that no one is using except for me and i prefer a different app anyhow. How hard is it to ask if the car is free or what ever, just talk to me about it, not just decide your taking it and I have to work another way around it. I spoke to Dad today and said that Id like him to reconsider the car thing. Mum veto'd it but she has also made it impossible to deal with without one. She is going on about how they can use that money into the house, as I said to Dad today, my sister made of with $50k of theirs and its like she farted without saying excuse me. She has had nothing from either of them and Im going on about $5k for a car so I have some freedom and some reliability, my sister is driving around in a brand new car. Dads not sure he has the money, so again, Im getting punished for looking after my sister. My old car was going back and forward to her hospital and I wasnt well myself so it wasnt getting its normal care. Thats whats focused on though, it wasnt getting its normal care. The fact that I was getting pulled pillar to post and no help at all from anyone, that I was not well etc. that doesnt come into it. Again, my sister is driving around in a brand new car, has stolen money from them and I cant get another $5k for a cheap car. I can tell you that they wont like how things play out when I go back to work, first thing Ill be doing is putting all my money I can into buying a car for myself before I start doing anything in regard to paying them back. They have loaned me money, well Dad has, but its a loan apart from that SFA, but my sister, she can apparently walk away after stealing $50k without a scratch, in fact she is still Mums absolute favourite. So Im so done with it all, you cant believe it.
 
Im trying to focus less on that as I can, because right now, there is nothing I can do about it. Im not listened to, Im not valued, Dad isnt going to do diddly on my behalf, so its about making sure Im ok, I can survive and if I have to be pretty cold hearted about it then Im going to be. Im pretty sick of getting walked over while they tell me how hard my sister has it. Im so sick of hearing from people how tired they are when they sleep 8-10 hours a night and Im here getting 3. I was really out of it yesterday morning but I kept pushing forward. It turns out that I had taken my night meds in the morning, both Dad and my sister saw how bad I was, but there was no discussion about if Dad should take me to appointments for the day considering how hard it was for me to keep my head on straight. I felt I had no choice but to keep pushing on and that Dad wasnt going to help, but looking back it was a really dumb decision, if I was in a better frame of mind I would have made Dad drive me, but I wasnt and thats when he should have stepped in and offered to help.
 
Ive stopped going and spending time with her since my sisters been back. In return she hasnt come up to see me so we can continue to have a private conversation daily. But more so, its just not healthy for me. It sounds horrible but she has her own mental health issues and she refuses to do anything serious about them. I dont have the capacity to he her crutch and its too easy for me to fall down trying to be so Im just not going to do it. She has the NDIS, she could get all sorts of services and for months she has chosen not to, but instead rely on the rest of us who are ourselves sick, to do everything for her. Im getting off the roller coaster of manipulation and self loathing. I cant do it anymore. They are hearing more about what I face lately, Im not being as quiet as I normally am. My sister is stuck with her at the moment, but thats partially my sisters fault. Get stuck into your room, make it somewhere you can deal with, it might not be perfect but you can get to your bed and sleep in your own room. But no, we will keep putting it off and winging about how hard she has it. She is her own worst enemy, same with Dad they both do it to themselves and then complain that Im not willing to do the same. I cant be around someone who has to constantly bring up the same range of topics that get me offside and then argue the same argument about them. She wants me to get tested for ADHD, I know I dont have ADHD. To be sure I dont have it, I did an online test, a pre-entry test for the Mayo Clinic, a well known place. It was like, are you kidding, why are you here. Which is what I expected. So, no Im not going to go get tested, Im not spending an hour or so driving each way, an hour being tested or more and taking the spot of someone who may actually have ADHD to indulge my Mum who cant for a moment recognise that she might not actually know everything. Im also sure as shit not going to go to my GP and ask for a referal based on my Mummy wants me to, as my Dad did because Mum decisded he was on the spectrum. The doctor he saw laughed at him until she realised he was serious. I have better things to spend my money and time on than seeing another doctor for something I dont have.
 
I seem not to be able to stop myself but Im pushing myself really hard today/tonight. Like Im really hurting and Im still pushing. Im incredibly mad, and hurt by Mum and its kinda boiling over at the moment and I cant go off at her because it wont help, she wont hear whats actually being said and that will just get to more. So I seem to be taking it out on myself. Im hardly able to sit and type, Im sweating, Im in pain, Im maxed on pain meds and yet I still cant help myself I want to get going on the next bit of what Im doing. Im really exhusted, the little sleep thing continues, though I managed 3hrs 45min last night.
 
Ive managed to resurrect my Galaxy Frontier S3 watch today, it wasnt so much dead but the band no longer fit. I bought another band of the same kind and took a couple links from that and added it to what I have and I was away. I then found a spare band which would have done the job while clearing out my room. Im really seeking for organisation at the moment. Like I have all this crap, clothes from years ago I havent fit in for so long, shoes that I never wear and all sorts of shit I keep because I think I have to as people have given it to me but Ive never used it and Im just going through, selling, op-shopping and lots of dumping. I dont need all this clutter for the sake of it.
 
Its been a couple more days since I wrote in this. Im going to update then post. My room is done now, I was really sore by the end of it all, but muscle sore. I thought I had managed to survive with minimal issue however the following day my spinal pain really kicked in. I think the lack of pain in my shoulder made it that I was able to do the cleaning I did. The amount of pain I would have been in before the procedure on my shoulder would have stopped me dead in my tracks. My back can be minimised by pain meds and its been better recently. My back pain is not a constant level of pain, like its not always at a level 7, with pain in the exact same spot, with the exact same feeling. Its more dynamic, it fluctuates and changes a lot, often with seemingly no reason. There are general rules, like generally walking so far will cause pain to increase or lifting so much. Standing for so long or bending in certain ways. But sometimes the rules dont apply, pain is never a constant, the extent of my disability is constantly in flux. That said, I have things I avoid doing as a rule because as a rule it minimises the pain Im going to experience. I got a bug up my butt about my room, I kinda thought in some ways that if it was less chaotic then maybe Id sleep better, but also I was just sick of having 1/2 my stuff on the floor because my wardrobes and drawers were full of stuff I simply didnt use.
 
I have been pretty focused on organisation, being structured, etc. Ive taken over the top shelf of the fridge and my food etc. is organised there, meals, then water, then Powerade (drinking until gone), etc. I have a drawer in the stand up freezer and my pantry stuff is in my room as there is no room in the pantry for it. Ive sorted my area out on the table with everything having a place. The car has been cleaned and everything is sorted out in there pretty much as well. Even my tablet has been given an organisational touch, with standardisation in customisation of apps being done. Like my meal tracker, I have food and drink I consume, that has all been put into a favourite type list, with standard naming conventions. Part of it is that it brings me comfort now, part of it is about bringing structure and a kind of tangible reliability when Im not in such a good place. Like, when my whole world feels like its spinning out of control, there is something that is controllable, something that has structure and can be somewhat defined.
 
It would probably be obvious that my Mum is the source of much of my angst, my family is a source in general but as often as not Mum is the main source behind it. Im activly avoiding her at the moment, not out of hate or anything but because its not healthy or wise for me to expose myself to her and her toxicity. She has had ample opportunity over many, many years to listen to others and take steps to address her mental health issues. However, she has made the decision not to take action, like proper action, about it. So, I dont think that its unreasonable for me to excuse myself from her influence. If she decided to actually see a psychiatrist and start getting proper help, see a proper psychologist and start working on her issues, not complaining about everyone else, then Id be there to support her. In the meantime I am not subjecting myself to it. My sister and Dad seem to keep running back into it. My sister is sleeping in Mums room at the moment, mainly now because she apparently cant get to her bed or her foorm isnt sorted well enough. She has doctors appointments etc. But she is home a bit, I walked in on her and she was trying on clothes for Mum. If she were smart she would be spending every moment she has, in her room, getting it to an acceptable place and going back to sleeping there. Being in Mums sphere of influence isnt good for her and you can tell its not. Dad, he is doing the same as me, but not to the same level. There is little point talking to Mum about any of it, she will not listen, she will not accept that she holds any responsiblity for our situation. She wont get up and do the things that she promises that she will do, she wont sort out her piles of stuff that are just sitting around. She doesnt want to leave her room because the rest of the house is so overwhelming, yet she is the cause of so much of it and she makes the rest of us live in it. She forces us to have to deal with the consequences of her actions and inactions and then when there is any resentment towards her for this, she cracks the shits because we dont understand. Then there is the thing that we cant actually take action to clean it up ourselves, she has to do it. She wont give up any control over anything, even when she says she doesnt want to do something, she tells people exactly what to say and do and any diviation from that and she cracks it. She acts as if she is the managing director of the family and Dad so kind of operations officer, he is supposed to make things happen. My sister is a senior manager and Im some lowly janitor, maybe the receptionist. She will not give up her spot, despite admitting she is unable to remember anything, she, when convieninent will say how she has great memory. She cant make her own appointments, but can organise for friends to come up. But if it needs to be cancelled, she cant do that, Dad has to do that. She will winge that I dont tell her this and that, even if she is asleep at the time, but she doesnt ever tell me when she has appointments and is going to take the car. I am always the one who ends up having to cancel my appointment. There is so much more going on. I havent been able to afford a car however I have just had some shares from work released. I have just sent an email to my team leader and team manager to see if there is anyway for the remaining shares that I am not currently allowed to touch can be released due to my circumstances. I have my doubts but its worth trying. I also have a Gideons Bible painted by Pro Hart which I think is worth around $800, all up if things went my way I could get close to $4750 together and get a car that way, if it were a bit more than that then Im sure Dad would find a way to help out. Im selling a few other bits and pieces but they arent worth that much and would be going towards normal medical costs. Not having a car and Mum just taking her car without warning is not helping my mental health and my feeling of self worth, so its important to me that I find a way to get myself another car. Mum has veto'd Dad from getting me one, after saying she would help out herself to get me a more expensive car if it were more reliable. She just seems to do what she wants as she wants, when she wants. Especially, if that means Im hurt in the process. The smoking thing, for a long time, I was the only one who wasnt allowed to smoke inside, during winter. She was allowed to and when my sister started again, so was she. But I was told I had to smoke outside. I was paying board, Im not at the moment due to my situation, but my sister doesnt, she was to clean the house instead. In the end Dad and I were expected to clean the house on weekends. So I was paying my board and my sisters. Its not that uncommon that there is one rule for me and another for everyone else.
 
There is only so far Im willing to be pushed and I think Mum has pushed me to that point. I have no safety net from Dad, it doesnt seem that there is anything she can do that he is going to step in and actually stop it. I mean he is worried about my sister but I dont see him stepping in and doing anything. He is less worried about me as "I will stand up for myself", which is completely true. But, I am always doing that on my own, he is never behind me, he is never actively supporting me when I do. Often enough he is trying to stay out of it or he is grumpy with me for standing up for myself.

Re: I dont know what to do

Well done on your achievements @ClockFace , something seems to have shifted for you

Re: I dont know what to do

@Dimity 

I think its a new antipsychotic Ive started. That said, there is a decent amount of frustration and irritability about the state of the house and there is nothing I can do about that. But the areas I exist in, my room, the car I drive, where I sit using my tablets etc. I can organise and structure them so I feel more peace when Im in those places, rather than constantly being surrounded by mess and disorganisation.

Re: I dont know what to do

Hoping things are OK with you @ClockFace and the family dynamics over Christmas and New Year were tolerable or - better - positive.

Re: I dont know what to do

@Dimity Christmas came and went. Mum was ok, we got threw it. Glad its over. How was yours?

Re: I dont know what to do

I havent posted for an absolute age, heaps has been happening. They added a medication to my regime which has made a huge difference in my life. Im still depressed but the suicidal ideation is gone, so has the hallucinations, derealisations, delusional thinking, etc. The difference that has made is beyond what I can describe. Ive been able to do more aroun the house, cleaning out and sorting out the pantry, fridge, freezer and medicine cabinet. I went through my room as well, it was the first thing I did. I got rid of heaps of shit I have been holding onto for years. I held onto this stuff so that I didnt upset people who had given them to me, but I dont use them and havent for so long. Its a little frustrating, I got rid of all this stuff and then Christmas came again and bam there is new shit I have to hold on to for a while until I can sell it or send it to Goodwill or something. I told my family earlier this year that I want out of the whole Christmas thing, getting and being obligated to give presents. I never know what to get people and just get someone else to tell me what to buy and I rarely get stuff I want or will use. Im a practical person, I like stuff I can use, stuff I will use but I get toys, like this year I got a few stuffed toys which is fine, I sleep with a toy of some kind every night and one of the few stuffed toys fits that bill. I got a toy light saber, what the _____ Im gonna do with that I will never understand. I like star wars but my sister has taken my enjoyment of the movies as some kind of passion, as she has with other movies I like. Im a nerd but not a collect crap from the franchise nerd. Hell they dont even rate in my top loved movies. Ill watch them once or twice but thats it. Ive lost count of the number of times I have watched V for Vendetta, I took time out from a trip to Sydney to get the graphic novel its based on as I couldnt get it else where (Im in SA). If I wasnt going over for work, I probably would have made some other reason to go over and get it. The point is, they dont really know or understand me enough to know the things Id like and the things I would like as gifts. But, the same can be said for me. I have no idea what to buy them, though for the most part if any of us want something we buy it for ourselves. I also dont see the point in having a say $100 or $200 budget for each person, so its just an exchange of gifts where your buying for others and in return they buy for you. You spend roughly the same amount as what you are going to receive as gifts but its your hope that they guy you stuff you want. Id rather just spend the money directly on myself and knowing Ill get the stuff I actually need. I feel like when I get gifts that Ill never use, I have had my money that I spent on them wasted. They got something I know they want, because via a third party its something they have asked for or its gotten out of them. I dont let on about stuff I want, I just buy it myself if I need it (when I have money that is) and no one has ever questioned me for ideas.
 
Anyhow, thats a small gripe about Christmas. Im not a fan, its all lies, covering the truth and pretending that things are ok for one day. We are all supposed to get on and put things aside, but if we can do it for one day, why not more often? Maybe we could actually resolve some issues, not just pretend they dont exist.
 
I got a call from my sleep doctors rooms, the results from my sleep study are back and my appointment has been brought forward to Monday instead of the 30th Jan. So, they have some results that must be reasonably important and need to be addressed pretty quickly. My plan competed with my old watch and I upgraded, the new watch tells me that my blood oxygen level drops pretty low when Im asleep, even though I have a CPAP machine. Which would answer some of the questions with my issues. I think that it means Ill have to be on oxygen support while I sleep. I dont mind too much, so long as I can get some real sleep and get back to work again.
 
Ive been reevaluating my life a lot of late, my health in particualar. What I was eating or more importantly what I was drinking, understanding how many carbs are in a meal, how that applies to drinks etc. has changed the way I look at all that in a massive way. Ive changed my diet heaps, I went from litres of iced coffee and other drinks to litres of water a day. I still have iced coffee and some other drinks, but rarely and a far smaller amount of it. The diet Im trying to stick to makes sure Im eating well rounded foods or in my case more shakes. Making sure my vitamins and minerals etc are all accounted for, with a multi to ensure things arent missed. I dont go without either, my main meals are awesome. I still have occassional meat pie or other things Id like, occasion iced coffee and what not but Im still losing weight, even with my recent weight loss my BMI is still over 50. Im not hating on myself for that, there are a lot of reasons. Not understanding about carbs, how and what makes a meal in the way of carbs, protein and fat is a massive reason. With more info Ive changed, if I understood what I was doing and actively chose to not to change what I consumed, then I would have an issue with myself. But I changed based on the information I possessed at the time. Its also primarily about being healthy, not weight loss. I want to improve my health as a primary goal, weight loss comes as part of what Im doing but isnt my primary focus.
 
Ive also been pretty focused on my finances. Its another area that I havent ever been overly confident with. I never knew if I had the money to get from pay to pay and meet my bills, medical appointments etc. Before I get into it, let me say that while I do work for a bank, its in the recoveries area so I am not at all, in anyway qualified to give financial advise nor should anything I write be taken in anyway as such. This is just recounting an idea and what I am trialling to help me get control and understand my money.
 
When I was growing up and started earning money, I would get paid in cash in a small envelope, one of the yellow/orange ones. It was still common, particularly in the county where I grew up. I didnt even have a bank account in the early days I dont think. I was taught that you got a bill and you worked out how much you needed to put aside from each pay until it was due. Each pay, you put how much money you had worked out on top of each bill. Once it fell due, you had all the money you needed to pay it. Then Id go to the local post office and pay the bill, yes there was no internet payment or internet banking, the internet was still new so everything was manually done.
 
When pays went digital, there was nothing to replace this method of managing my bills and I found it really hard to manage my money. Having it all in one pot, not knowing at a glance what was due and when and being able to put money aside for each bill just confused me. So, its always been a bit of a dream for me to find a way to get back to doing things in a similar way. The big banks will generally give you a fee free account if you deposit over a certain amount per month, about basic wage. What I discovered was some of the smaller banks, quite a few actually offer unlimited fee free accounts. The biggest limitation, for me and my purposes is that the card for the accounts were limited.
 
I went through my expenses and made a list of bills and catagories of expenses that I wanted to treat like a bill, ie my grocery budget, my online meal delivery budget, a budget for shake mixes and so on. I worked out how much of everything I used, like a pack of protien has 33 serves and I needed x amount of serves a month. So I knew I needed so many bags a month and I applied that to everything that I could apply a metric too. Food wise, for what I eat day to day, I have it in my diary when I need to order more of each food or meal item so that I dont run out. I can determine with some level of certantly what I am spending in October of this year, on the provision there are no changes made between now and then. I still have buffers built in but it means that I can have a budget for each expense, that it pretty close to what would be spent.
 
Each expense category or bill has an associated account with one of a number of banks. Basically, I opened accounts with a few banks so that I had an account for each card design they offered. Some banks only have one debit card design but some have 4 or 5, they are the ones I focused on. I have a number of items that I get that are under a category, ie groceries has a few things that I only need to buy every 2 months. So there is a bank that has an account with a card and then up to 10 sub-accounts under it. I used that bank to put money aside for those things and when it comes to buying the item, I just move the saved funds to the expense/category account which has a card and then I can buy the item when I do the next greater purchase.
 
Its a little complicated, but I now I have it all sorted (pretty close anyhow) but it means that I am effectively going back to what I did when I was paid cash. Im hoping it works out, I tried a similar thing a while ago but it was too hard with all the medical costs. I got a decent wad of cash from Dad for Christmas so I was able to use that to put some money into certain categories, buy enough to have a pantry (which I have set up in my cupboard in my bedroom). When I get paid next Ill start using the budget, well most of it. Im not using it all because I need some money pointed at more urgent things, but hopefully within the next couple of months it will be up and running fully. Even though Im not using it all, I know where my money is, what its assigned to and that I have enough money aside for bills regardless of when they fall due.
 
As I say I cleaned out my room. I went back to basics, a minimalist take on things, which is what I prefer. I started tackling things around the house, like the pantry, fridge, freezer etc. Most of which I dont use but are total shambles. I have a couple draws in one of the freezers for my meals I get delivered. I have a shelf in the fridge for my water, defrosting meals, oat milk etc. My towels are dealt with in my room, not with the rest of the family, like most things. I know have my pantry in my room as well. In most things, I am seperated from the family. It does help that I am a minimalist in most everything, like I eat pretty much the same thing daily, just flavor varies a little I chose from a selection of 4 main meals, I just cycle through them. I select from a small selection of shakes etc. So I dont have a huge pantry. But I am sorting some of the communal areas mainly because they do my head in. They are  so disorganised and no one will actually organise them, everyone blames the other and I can tell you they are all as bad as the oher.
 
Not long before I started to make all these changes, before my outlook changed etc I was put on a new medication and I can only conclude that it is a large reason behind the changes. I feel physically and mentally better since starting the medication, more so since stabilising the dose. I think once we can sort out my sleep issues and some of my other physical issues that will only improve further. My pain issues are a ways off being resolved. Im having to reduce my pain medication use a huge amount. Im hoping to get a spinal cord stimulator but I cant while I am on the high dose of pain meds Im on. Its a really painful process, but there again the level of pain meds Im on I was recently told could easily turn deadly.
 
Its an odd thing, I always said that doctors didnt get it that Id rather risk dying than deal with the pain without pain meds but faced with the prospect of actually dying it was a different story. But at the same time, God damn its hard to deal with the pain, particularly at the moment as I write this, its really bad and getting quite overwhelming.
 
Its completely amazing and somewhat abhorant. Im not allowed to drive long distances at the moment due to my sleep issues. I get incredibly and overwhelmingly tired with little warning. If Im not occupied then there is a decent chance, if Im remotely tired, that I will just fall asleep. So, even with local driving, which I am allowed to do, I am careful that I am only driving when Im not at all sleepy etc. Dad knows this, yet he makes it as hard as possible for me to actually tie him down and commit to driving me to the city, no matter how important the appointment is. My sister might need him is a common excuse (she is/has been in hospital). I have had to make the trip "worthwhile" and then he complains the whole time about the list of things needing to be done.
 
Its today thats really ticking me off though. He asked if I could be back up to him to take Mum if he couldnt take her to the doctors, which I said yes. Then its today and Im primary taking her so he can keep working at home. I had a shot at him and said that he has to keep in mind that if I get tired I wont be able to take her. Then it was all bullshit about, "Just dont get tired". Its said 1/2 jokingly, like everything when it comes to my health issues. Shove as much of my stuff under the rug as possible, push me as much as you can and ignore what I have said are my limitation, imposed by doctors or just capable of doing now. I say Im in pain, Im told to "Stop it". My sister has had her spinal stimulator removed as it all got infected. Now its all about how much pain she is in, though she tired Dad out walking around the shops the other day. Me, I manage 4 minutes, or atleast thats what Im supposed to limit to of walking and Im treated like Im full of shit. So, I dont say anything about the gravity of pain Im in then it, I dont say Im in pain so I must not be in that much, not like my sister, who winges the whole damn time. All her medical stuff, thats legit. Mine, not so much or at least being a MAN I should be able to handle. Hell, he did a nice thing and hung up my washing for me, but outside, not on my inside line. Then he left it out on the line until I had to get it off the line myself. Doesnt sound like much but my tendons in my shoulders are being replaced with bone substance, its so painful to get my hands above my head.
 
Im supposed to keep driving limited, I get around for my stuff and I dont mind helping given the circumstances at home but to have Mum dumped on me so he can keep working around the house isnt in the spirit of things and is just pushing me so he doesnt have to deal with Mum, like I need to deal with her as well as try and drive. I know he gets it, he isnt stupid so he doesnt care or Im just not that important.
 
 

Re: I dont know what to do

Good to hear of your personal progress @ClockFace . 

Christmas for me came and went... I caught up with several family. I rarely see them but it's good to still have a few connections.

You seem to have some clever ways of organising things. 

 

Re: I dont know what to do

I havent posted for an absolute age, heaps has been happening. They added a medication to my regime which has made a huge difference in my life. Im still depressed but the suicidal ideation is gone, so has the hallucinations, derealisations, delusional thinking, etc. The difference that has made is beyond what I can describe. Ive been able to do more aroun the house, cleaning out and sorting out the pantry, fridge, freezer and medicine cabinet. I went through my room as well, it was the first thing I did. I got rid of heaps of shit I have been holding onto for years. I held onto this stuff so that I didnt upset people who had given them to me, but I dont use them and havent for so long. Its a little frustrating, I got rid of all this stuff and then Christmas came again and bam there is new shit I have to hold on to for a while until I can sell it or send it to Goodwill or something. I told my family earlier this year that I want out of the whole Christmas thing, getting and being obligated to give presents. I never know what to get people and just get someone else to tell me what to buy and I rarely get stuff I want or will use. Im a practical person, I like stuff I can use, stuff I will use but I get toys, like this year I got a few stuffed toys which is fine, I sleep with a toy of some kind every night and one of the few stuffed toys fits that bill. I got a toy light saber, what the _____ Im gonna do with that I will never understand. I like star wars but my sister has taken my enjoyment of the movies as some kind of passion, as she has with other movies I like. Im a nerd but not a collect crap from the franchise nerd. Hell they dont even rate in my top loved movies. Ill watch them once or twice but thats it. Ive lost count of the number of times I have watched V for Vendetta, I took time out from a trip to Sydney to get the graphic novel its based on as I couldnt get it else where (Im in SA). If I wasnt going over for work, I probably would have made some other reason to go over and get it. The point is, they dont really know or understand me enough to know the things Id like and the things I would like as gifts. But, the same can be said for me. I have no idea what to buy them, though for the most part if any of us want something we buy it for ourselves. I also dont see the point in having a say $100 or $200 budget for each person, so its just an exchange of gifts where your buying for others and in return they buy for you. You spend roughly the same amount as what you are going to receive as gifts but its your hope that they guy you stuff you want. Id rather just spend the money directly on myself and knowing Ill get the stuff I actually need. I feel like when I get gifts that Ill never use, I have had my money that I spent on them wasted. They got something I know they want, because via a third party its something they have asked for or its gotten out of them. I dont let on about stuff I want, I just buy it myself if I need it (when I have money that is) and no one has ever questioned me for ideas.
 
Anyhow, thats a small gripe about Christmas. Im not a fan, its all lies, covering the truth and pretending that things are ok for one day. We are all supposed to get on and put things aside, but if we can do it for one day, why not more often? Maybe we could actually resolve some issues, not just pretend they dont exist.
 
I got a call from my sleep doctors rooms, the results from my sleep study are back and my appointment has been brought forward to Monday instead of the 30th Jan. So, they have some results that must be reasonably important and need to be addressed pretty quickly. My plan competed with my old watch and I upgraded, the new watch tells me that my blood oxygen level drops pretty low when Im asleep, even though I have a CPAP machine. Which would answer some of the questions with my issues. I think that it means Ill have to be on oxygen support while I sleep. I dont mind too much, so long as I can get some real sleep and get back to work again.
 
Ive been reevaluating my life a lot of late, my health in particualar. What I was eating or more importantly what I was drinking, understanding how many carbs are in a meal, how that applies to drinks etc. has changed the way I look at all that in a massive way. Ive changed my diet heaps, I went from litres of iced coffee and other drinks to litres of water a day. I still have iced coffee and some other drinks, but rarely and a far smaller amount of it. The diet Im trying to stick to makes sure Im eating well rounded foods or in my case more shakes. Making sure my vitamins and minerals etc are all accounted for, with a multi to ensure things arent missed. I dont go without either, my main meals are awesome. I still have occassional meat pie or other things Id like, occasion iced coffee and what not but Im still losing weight, even with my recent weight loss my BMI is still over 50. Im not hating on myself for that, there are a lot of reasons. Not understanding about carbs, how and what makes a meal in the way of carbs, protein and fat is a massive reason. With more info Ive changed, if I understood what I was doing and actively chose to make myself the way I am by what I consumed, then I would have an issue with myself. But I changed based on the information I possessed at the time. Its also primarily about being healthy, not weight loss. I want to improve my health as a primary goal, weight loss comes as part of what Im doing but isnt my primary focus.
 
Ive also been pretty focused on my finances. Its another area that I havent ever been overly confident with. I never knew if I had the money to get from pay to pay and meet my bills, medical appointments etc. Before I get into it, let me say that while I do work for a bank, its in the recoveries area so I am not at all, in anyway qualified to give financial advise nor should anything I write be taken in anyway as such. This is just recounting an idea and what I am trialling to help me get control and understand my money.
 
When I was growing up and started earning money, I would get paid in cash in a small envelope, one of the yellow/orange ones. It was still common, particularly in the county where I grew up. I didnt even have a bank account in the early days I dont think. I was taught that you got a bill and you worked out how much you needed to put aside from each pay until it was due. Each pay, you put how much money you had worked out on top of each bill. Once it fell due, you had all the money you needed to pay it. Then Id go to the local post office and pay the bill, yes there was no internet payment or internet banking, the internet was still new so everything was manually done.
 
When pays went digital, there was nothing to replace this method of managing my bills and I found it really hard to manage my money. Having it all in one pot, not knowing at a glance what was due and when and being able to put money aside for each bill just confused me. So, its always been a bit of a dream for me to find a way to get back to doing things in a similar way. The big banks will generally give you a fee free account if you deposit over a certain amount per month, about basic wage. What I discovered was some of the smaller banks, quite a few actually offer unlimited fee free accounts. The biggest limitation, for me and my purposes is that the card for the accounts were limited.
 
I went through my expenses and made a list of bills and catagories of expenses that I wanted to treat like a bill, ie my grocery budget, my online meal delivery budget, a budget for shake mixes and so on. I worked out how much of everything I used, like a pack of protien has 33 serves and I needed x amount of serves a month. So I knew I needed so many bags a month and I applied that to everything that I could apply a metric too. Food wise, for what I eat day to day, I have it in my diary when I need to order more of each food or meal item so that I dont run out. I can determine with some level of certantly what I am spending in October of this year, on the provision there are no changes made between now and then. I still have buffers built in but it means that I can have a budget for each expense, that it pretty close to what would be spent.
 
Each expense category or bill has an associated account with one of a number of banks. Basically, I opened accounts with a few banks so that I had an account for each card design they offered. Some banks only have one debit card design but some have 4 or 5, they are the ones I focused on. I have a number of items that I get that are under a category, ie groceries has a few things that I only need to buy every 2 months. So there is a bank that has an account with a card and then up to 10 sub-accounts under it. I used that bank to put money aside for those things and when it comes to buying the item, I just move the saved funds to the expense/category account which has a card and then I can buy the item when I do the next greater purchase.
 
Its a little complicated, but I now I have it all sorted (pretty close anyhow) but it means that I am effectively going back to what I did when I was paid cash. Im hoping it works out, I tried a similar thing a while ago but it was too hard with all the medical costs. I got a decent wad of cash from Dad for Christmas so I was able to use that to put some money into certain categories, buy enough to have a pantry (which I have set up in my cupboard in my bedroom). When I get paid next Ill start using the budget, well most of it. Im not using it all because I need some money pointed at more urgent things, but hopefully within the next couple of months it will be up and running fully. Even though Im not using it all, I know where my money is, what its assigned to and that I have enough money aside for bills regardless of when they fall due.
 
As I say I cleaned out my room. I went back to basics, a minimalist take on things, which is what I prefer. I started tackling things around the house, like the pantry, fridge, freezer etc. Most of which I dont use but are total shambles. I have a couple draws in one of the freezers for my meals I get delivered. I have a shelf in the fridge for my water, defrosting meals, oat milk etc. My towels are dealt with in my room, not with the rest of the family, like most things. I know have my pantry in my room as well. In most things, I am seperated from the family. It does help that I am a minimalist in most everything, like I eat pretty much the same thing daily, just flavor varies a little I chose from a selection of 4 main meals, I just cycle through them. I select from a small selection of shakes etc. So I dont have a huge pantry. But I am sorting some of the communal areas mainly because they do my head in. They are  so disorganised and no one will actually organise them, everyone blames the other and I can tell you they are all as bad as the oher.
 
Not long before I started to make all these changes, before my outlook changed etc I was put on a new medication and I can only conclude that it is a large reason behind the changes. I feel physically and mentally better since starting the medication, more so since stabilising the dose. I think once we can sort out my sleep issues and some of my other physical issues that will only improve further. My pain issues are a ways off being resolved. Im having to reduce my pain medication use a huge amount. Im hoping to get a spinal cord stimulator but I cant while I am on the high dose of pain meds Im on. Its a really painful process, but there again the level of pain meds Im on I was recently told could easily turn deadly.
 
Its an odd thing, I always said that doctors didnt get it that Id rather risk dying than deal with the pain without pain meds but faced with the prospect of actually dying it was a different story. But at the same time, God damn its hard to deal with the pain, particularly at the moment as I write this, its really bad and getting quite overwhelming.
 
Its completely amazing and somewhat abhorant. Im not allowed to drive long distances at the moment due to my sleep issues. I get incredibly and overwhelmingly tired with little warning. If Im not occupied then there is a decent chance, if Im remotely tired, that I will just fall asleep. So, even with local driving, which I am allowed to do, I am careful that I am only driving when Im not at all sleepy etc. Dad knows this, yet he makes it as hard as possible for me to actually tie him down and commit to driving me to the city, no matter how important the appointment is. My sister might need him is a common excuse (she is/has been in hospital). I have had to make the trip "worthwhile" and then he complains the whole time about the list of things needing to be done.
 
Its today thats really ticking me off though. He asked if I could be back up to him to take Mum if he couldnt take her to the doctors, which I said yes. Then its today and Im primary taking her so he can keep working at home. I had a shot at him and said that he has to keep in mind that if I get tired I wont be able to take her. Then it was all bullshit about, "Just dont get tired". Its said 1/2 jokingly, like everything when it comes to my health issues. Shove as much of my stuff under the rug as possible, push me as much as you can and ignore what I have said are my limitation, imposed by doctors or just capable of doing now. I say Im in pain, Im told to "Stop it". My sister has had her spinal stimulator removed as it all got infected. Now its all about how much pain she is in, though she tired Dad out walking around the shops the other day. Me, I manage 4 minutes, or atleast thats what Im supposed to limit to of walking and Im treated like Im full of shit. So, I dont say anything about the gravity of pain Im in then it, I dont say Im in pain so I must not be in that much, not like my sister, who winges the whole damn time. All her medical stuff, thats legit. Mine, not so much or at least being a MAN I should be able to handle. Hell, he did a nice thing and hung up my washing for me, but outside, not on my inside line. Then he left it out on the line until I had to get it off the line myself. Doesnt sound like much but my tendons in my shoulders are being replaced with bone substance, its so painful to get my hands above my head.
 
Im supposed to keep driving limited, I get around for my stuff and I dont mind helping given the circumstances at home but to have Mum dumped on me so he can keep working around the house isnt in the spirit of things and is just pushing me so he doesnt have to deal with Mum, like I need to deal with her as well as try and drive. I know he gets it, he isnt stupid so he doesnt care or Im just not that important.
 
--------------------------------------------------------------------------------------------------------------------------------------------------------------------
 
Today is a really bad day pain wise, my back is bad but my legs, shoulders/arms and hands are all really bad too. Its knocking me about a fair bit mentally. Ive avoided any extra pain meds, just my base line meds so that I can keep to my pain med reliance and deal with this hyperalgesea thing. I dont know what the go is with my legs, why they are so sore today. I put my compression wear back on not long after I woke up and its calmed them down but its still a bit hard to walk. My shoulders have been steadily getting much worse since the pain relief from the injection wore off. My left arm is really bad, I can hardly lift it, it doesnt like to twist, I used to be able to get my meds into my mouth with that arm/hand but now I cant twist it all enough so I have to transfer it to my right. My right is better than my left but not by a huge amount. Ive brought forward my appointment with the specialist for them to see if there is something he can suggest.
 
My hands are really painful, my knuckles feel like they are the size of a baby's knee, its really painful to keep them straight and almost impossible to bend them fully. I can type but not properly, Im not really typing with all my fingers. I have my compression gloves on, which have helped a fair bit but more so they help keep them slightly bent which allieviates a fair amount of pain.
 
Mentally, its kocking me a fair bit. Ive still managed to do the tasks I have set myself daily. I only have my evening routine to do which is more about self care than cleaning etc. Days like this I feel very much like I am trapped inside a body of pain, like Im on a island with an errupting volcano surrounded by a sea of acid. It doenst matter what I do, which way I turn or even if I stay still Im going to be in pain that I just cant escape. The best I can hope for it to minimise the amount of pain I experience, to avoid putting myself in situations where the pain will be worsened. But that means I basically cant live, cant do anything and whats the point of life if you arent able to do anything. I dont really like letting my pain win, I want to keep going, doing something, even if its just writing on here. I dont like the idea of being robbed, I mean a lot is stolen from me due to my pain but its more the stuff that I give away that Im not happy about.
 
 

Re: I dont know what to do

After my appointment today I have gotten pretty down, having my situation condensensed into a letter and having it read to me and subsequently read at home for final review has been pretty confronting. I know I have these issues and I know that they affect me in certain ways, like mentally and stuff, but its rare that I am thinking of all the issues, how they all affect me etc. at the same time. Having it all put to me all at once, having a constant stream of all the things that are wrong with me, has been a bit much to handle. I know that its not a reflection on me, but it does feel like a greatest hits of my failings as a man. I am also very aware that there is a fair bit more going on that doesnt fit into the relms of what I can put forward for under the NDIS or is worthwhile putting forward anyhow.
 
Ive been wondering about returning to work, Ive figured that once we get somewhere with the problems with my sleep apnea and lack of blood oxygen when sleeping that Id be able to start looking at returning but in my letter from the doctor she has said that without significant support I wont be able to return to work. Regardless of my medical situation, this is going to be an issue for my Mum. She thinks I should be at work now, let alone not being able to return for the foreseeable future. I told Dad and got nothing more than a grunt, I dont know if he is unimpressed with me about that or if he is annoyed because he knows the BS that he will have to deal with because of my issues. My head is still spinning about it, Ive been looking forward to returning to work, I want to, Ive been fighting to stay employed during this period but now is it worthwhile? Work asked me to resign the other day because of my medical situation. That and my doctors position kinda came out of left field, maybe I wasnt paying attention, maybe I was more hopeful than I should have been, maybe the statements like "you cant go on disability" from family has me pressuring myself to keep working.
 
I am pretty fortunate at the moment Im on income protection which runs out in a year, so its not like I have to be overly worried about my finances immediately. I mean the income Im on is a reduction to what I was getting when I was working, which has been hard to deal with as I was stuggling on a full wage. How I will adapt to a lower income I have no idea. I assume that I would go for disability, though that is really hard to get,  I will get a small amount of a payout from work for leave entitlements etc and I would think I have a case for TPD insurance but that doesnt set me for life in anyway. Bigger than that, what will I do with my life? What purpose would I have? All I have known is that I am supposed to work. I havent been out of work and reliant on government sources for more than a month in my life. I work, I enjoy work, what am I and what do I do without it? I think its very much ingrained in me that as a male I find my value in what I do, how I provide, for myself or for a family. I dont feel like that is the correct way to think anymore but my Dad worked and provided, that was/is his value. When he wasnt at work, he was improving where and how we lived, renovating the house etc. I cant do that sorta stuff, I do what I can in the way of cleaning up but now it appears I cant even provide for myself into the future. That said, it isnt something I am just accepting, the caviate was without significant support, so I need to find that support. It is my full intention to go back to work at some point but what do I do in the mean time? How do I deal with home and Mum, who wont be at all supportive but quite the opposite. Not to mention how I deal with my sister on a daily basis without work as a buffer.
 
Im going to have to talk to my Union Rep tomorrow as they have been discussing a way to hold my job for longer and give me time to get back to it as I was wrongly under the impression that I was getting close to returning to work not that I wasnt in a position to return to work as I am. I will have to tell them what the doctor has said and that might change how they are handling things.
 
I have a multidisciplinary clinic tomorrow in the city so Ill have to do it after I get back from that. Ive been waiting for this clinic for ages so I hope its worthwhile. I have my orthopedic surgeon the day after, on Friday I have a cystoscopy to see if the cancer has come back and then its back to the GP on Saturday and Dad has to drive me to all those appointments, which Im sure I will hear how that is an issue even though he says its not. I dont really expect a huge amount from any of the appointments, especially after today, it would seem that they have pretty much given up hope of my situation improving, if it does its gonna be short term.
 
The whole thing today, well now yesterday, really got to me, enough that I fell into old habits and I didnt eat all day. I forced myself to eat tea though. I went to bed around 9pm and Ive woken up at 2am. I have no sleeping pattern so thats neither early or late, but it is a pretty decent sleep for me, that said bar a nap I hadnt slept for a day and a half before that. I have woken up feeling a little bit better than I did before I went to bed. My entire routine went out the window yesterday, not having slept screwed things a fair bit and then my appointment it just destroyed my routines. Typically I have a series of check lists that I go through at different points of the day. Even if Im not on time, I do the check list at some point but none of them were done yesterday, I did a few things on them just because they get done in the course of a day, but thats how I forgot my morning medication yesterday. I really hope today I can get back to my routines etc.
 
I have woken in a lot of pain this morning, my back is really bad which is probably because I missed my morning pain meds. My right wrist and hand is really problematic, they are really painful but some of my fingers are numb and tingling. It started before I went to bed, its not got worse just its another thing to deal with. I will probably bring it up with my Orthopedic Surgeon when I see him tomorrow.