MRI Results and psychotic experience

[tyme]

Arghhh @ClockFace . How eventful. It sounds so hard. In a way, I'm glad you left your sister to your dad this time. I don't think you could cope with much more. The pain sounds unbearable.

If I could, I'd take the pain away, but I can't.

Please do what you can to look after yourself.

[ClockFace]

My mate, my only friend sent me a message asking to catch up because we havent seen each other for ages. I just had to say no and then explain whats going on. I did it over messenger so it wasnt like talking to him, I didnt really go into huge detail, I didnt talk about everything but enough. At the same time I felt like I was making excuses why I couldnt spend time with him, which wasnt the case. I dont know if I can do it either physically or mentally. Can I walk where we go to eat, can I handle the chairs, the drive etc. Can I handle the crowd etc. What happens if I need to lay down, need pain meds, etc. What happens if I have a psychotic experience, what if I havent slept for a night or 2. There are so many what ifs and the likelyhood is one or more are going to be something Im facing, because Im facing them most nights.

I went to bed last night and woke up a couple hours later as I really had to go to the loo. Typically, I go to the loo before I go to bed, I still do but so often Im in there so long trying to pee that I give up and just go to bed. I was just going to have  a smoke and go back to bed but I didnt, I decided to message my mate back. Then Im sure I fell asleep at the table for a while. After that I had issues with staying awake and kept dosing off. Id wake up and have to fix what I had written as my fingers would rest on a key and that would repeat for line after line. Its now 2:30am and Im planning to go back to bed. Having written that, its now 3:15am so I assumably fell asleep. I got a few hours more sleep and woke up again. I am pretty sore in all the key areas this morning, which doesnt suprise me since I fell asleep at the table. Im going to go into town, get a couple of things and when I get home I might go back to bed. Actually, I have my GP this morning so I might wait until after that to go back to bed.

Im starting to get concerned, with the cortizone into my shoulder I should have started to feel relief after about a fortnight. Its not quite a fortnight but it seems to me that its worse not better, as is my other shoulder. I dont particularly feel like having surgery on the stupid thing and I suppose I dont know that it will be surgery but what the bet Ill have to see a surgeon which is another specialist, which is more damned money.

I was driving back from town and I think it dawned on me a big part of the reason I have a problem with Mum letting my sister have her ATM card etc. and spend as she pleases is that Mum gave me no and has given me no financial support to look after my sister while she was in hospital. I dont expect that she would give me her card, I kinda think thats dumb to do but she could have done something to help me financially, I mean she would have been aware how much it was costing me and that I didnt have the money. Hell, the money she could have got through work, that she didnt do the statements for, that is now everyone elses fault, Mum was going to give me the money, to give to my sister. Like a bit over 4 grand, so she wasnt out of pocket. The thought of giving me that money to help subsidise what I have spent, that doesnt even get a consideration.

Mum says that if she were well, she would have been the one to do what I was doing so financially, I should be getting help. But she thinks that help should be up to Dad, it should be his reponsibility to pay for my fuel, some drinks and lunches. I dont know if she has bothered to talk to him about it, like Im not going to, thats something that my parents should discuss. Its not just that she doesnt speak to him about it, if it were my sister in my shoes it would appear that she would just help my sister regardless, she would yell and scream at Dad and if he didnt budge she would basically drain her account. For me, I cant even get her to speak to Dad on my behalf, meaning she doesnt really believe what she is saying, she is just trying to get me on side or she doesnt actually give a shit about me, he prescious daughter was looked after, no matter the cost to me health wise or financially and now Im no use on that front Im of no concequence.

Im pretty well exhusted, Ive had little sleep of concequence, I get a couple hours here and a couple there but I dont get like several hours continous often, its really rare. Even when I am asleep at the moment its not really good sleep, quality sleep, Im plagued by fears, thoughts and a racing mind over my back, over my mental health, over my health in general and to an extent my finances. Maybe thats part of why I dont sleep, the other part is pain, it is as much a part of me and my existance as my heart or lungs.

Im having a hard time with different aspects of my mental health, the physical manifestations of my mental health issues are really problemsome. The way I percieve the world is one of the biggest issues, today I feel like I am seeing the world through a third party, its the best I can describe it. Im fighting the feeling to a degree but in many ways Im just living with it. I feel like, I dunno, its hard to explain. Its like Im floating 1 inch above the world, that Im here, I look and act normal, but Im just that little bit not, that little bit unattached to reality. Im not really seeing things through my own eyes, its like Im viewing through someone elses eyes. Its like Im here, I dont seem any different to people looking at me, talking to me, but I feel like Im just a little off centre, Im like out of phase with the rest of the world. Its a feeling Im having more and more and for longer and longer each time. I am less and less distressed by it though, I used to kinda slow down, be careful, etc when it happened, now Im more cautious but it doesnt really bother me. I know its not a good thing and I will bring it up with my psychiatrist when I see her but it doesnt stop me when Im having it. While I am having the feeling alot today, it could also be more about not having slept much, I know if I stop at the moment there is a good chance Ill nod off.

Im looking forward to getting the doctors appointment out the way, when I get home Im planning to go to bed and try to get some sleep. That I am looking forward to.

Id like to talk to my GP about dealing with my acne and boils at some point but they are always on the back burner, they just arent important enough to get any air time. Mum is on about a drug for weight loss I should try, again when do I get the time to discuss that, added to which, its over $100 a month, where do I find that money. Id like to discuss with my GP or someone about stopping smoking, for meds I have to get psych clearance, but again it doesnt rise to the top of importance.

I got a call just as I was about to leave for GP from the spinal centre. They had a cancellation for Monday and were offering to me, which I accepted of course. Its like $450 for the appointment which I have to pay today. It's a lot of money to just have floating about any which way I dont have it. I briefly spoke to Dad and he will cover it, when I get home we will sort it out.

I wonder why I got the cancellation, Im sure there are others waiting much longer than me. The only thing I can think of is that I got triaged with a urgent ranking or something. Whats wrong with my back is pretty bad and there is a fair bit wrong so maybe thats what it was. Any which way Im pretty happy not to be waiting a month to see him.

I saw my GP and my tounge is infected and inflamed, which is why it feels too big for my mouth and hurts. She took a swab and the blood tests Im supposed  to have done include what she was going to do. From what she was saying, she would think its due to me not being able to eat much, so Im probably malnutritioned. I dont eat much but when I do I know I could eat better, I just dont have the energy to do it, I dont have the inclination to care that much either.

We talked about my peeing, shes sending me off for an ultrasound, she is concerned that I have an enlarged prostate. I have to do a urine sample, there was no point doing it at the practice, the amount of time it would have taken. I didnt need to go, let alone was it desperate so I could have been in there for a really long time with no action. So Im doing it at home and bringing back in.

Every time I go to the doctors lately its a new issue or 2. We dont seem to actually resolve anything, we just add more shit we are looking into.

Im going to go to bed and see if I can get some sleep. Nope, not at all. I did however really hurt my shoulder. I gave up when I spasmed and both my arms were swinging, like I was getting ready for a boxing match. I dont know if it was then or if I did something else but my neck is pretty sore too.

My back isnt too bad, Im walking ok but I have intense pains in my right lumbar. Its not the end of the Earth but annoying.

This not sleeping thing is really starting bug me quite a lot. Im getting a few hours a day if Im doing well. I keep going back to bed when I feel the tiredness hit me. I have swings where Im ok or not overly tired, then it hits me, Im completely knackered. I just have to hope that Im able to go to bed when it happens. Even then its not a sure thing Ill sleep. There is just so much on my mind about my own mental and physical health and my pain. Then all the stuff with my Mum, Dad and sister. Seriously, my mind doesnt stop thinking about all the shit going on, I feel like even if its not at the forefront of my mind its still there, Im still thinking about this shit. Its like my pain, its always there, but not always front and centre, if it were id get nothing done but I am always aware of it. I just wish there was a way where I wasnt aware of any of the crap, where my mind was actually quiet for a while, truely quiet. If I could get some actual quiet, I might actually get some real sleep. What will happen is Ill take some extra meds once Ive spoken to Mum in a bit and try and sleep then.

I did go down to see if Mum was up and to wake her if she wasnt, she was on the phone, Im not sure who to. As I opened the door Mum looked up at me as if I had killed someone. Im not sure what Ive done, I suppose if Ive actually done something at all. But its an example of how our family is now, we dont see each other and smile, we rarely even say hello. We have this face that isnt exactly angry, its certainly not happy, its just this face of perpetual disappointment, not in one another, though it does come across as this alot, its in life. Life for each person in my family and as a whole isnt exactly what any of us wanted for ourselves or wanted for each other.

I went and spoke to my Mum and let her know whats happened this morning with the doctor etc. I started to talk about whats going on in my mind etc, thats keeping me from getting sleep. I said about the perpetual question, has Dr Cornish permanantly screwed me. She then went on about suing which meant we started talking about what happened to her when she collasped while doing a medical scan. From there it was made all about her, it stopped being that Im not sleeping and whats causing it to being about her. After a little while I said that I was going, I was going to take some meds and get some sleep. She said something about me leaving so soon, I mean no sleep, wanted to tell her whats going on before Dad had a chance to mess it up, she couldnt work out that I needed to go get some sleep. Amazingly, I started to walk towards the door and she started on about some crap my sisters psychologist is on about, Im sure if I heard it first hand it'd make sense but Mum Im sure had it arse around and inside out. Im happy for her if it works for her and Id listen to what was going on if I could follow and it made sense. Its one of the harder things with Mum, especially when you're tired, she doesnt talk in full sentences, I mean she does eventually but there is so many gaps, umms, arrs, etc. She has to think about the next word or two every word or two. She cant help it, its really not  her fault, but its incredibly hard to follow sometimes.

Ive had my meds, Im just waiting for them to kick in, once they start too Im gonna head to bed. I have to wait, if I go to bed too soon the spasms will cause issues with sleeping.

I did manage to fall asleep for a couple hours and Im awake again. Im going to try again soonish, its nearly the time I would normally go to bed. Im so spaced out its not funny, I feel really out of it. Sleep wasnt uneventful, I kept waking up in pain/discomfort. My tounge can be pretty painful at times and certain actions can be really painful. Just swollowing at times can be pretty uncomfortable. But there is another action, similar to swallowing that I do which is really painful. That was happening while I was asleep and I would wake up from the pain but not sufficiently to get out of bed. Id pretty much fall back asleep. It not something anyone has realised how painful eating has/is becoming. If swollowing nothing hurts enough to wake me up etc. swollowing food is really not plesant, either is chewing. Its also an infection, so I probably dont feel well, on top of all the other stuff in my life and the normal level of unwell I feel, I dont feel well from the infection, which is pretty true, I dont feel so great at all.

Dad is doing a really good job of ticking me off at the moment. I dont know how many times today he asked me if Mum was up/whats Mum doing? I was going down to see if she was awake and have a chat if she was, litterally opening the door to her area he asked if Mum was up. Seriously how was I supposed to know. But he asks, I dont know how many times about Mum and if she is ok, awake, etc. There is more than just this, its a constant hounding for information from me about my sister or Mum. I said Mum had spoken to my sister and he started aking me questions about it rather than going down and talking to Mum himself. Thats what bothers me so much, I dont have a problem with him asking if she is awake in reference to waking her in the mornings but beyond that work it out for yourself. Stop trying to have a relationship with Mum via your kids. Mum isnt much better, everytime I go down there, "Whats Dad doing"? like Im monitoring what he is doing every moment of the day. I dunno, it really bugs the shit out of me. If you want to know what each others doing talk to each other, I mean you both have mobile phones, ring, txt, it doesnt matter, just communicate with each other. If you cant communicate on this level, on the simple level of what are you doing, then how can you think to communicate on more important levels.

I know he doesnt get mental health, as he says he is first to admit it. But at some point dont you do something about that? Mum has suffered from depression for decades, she has been in a facility for it for something like 20 weeks. Ive suffered from a range of mental health issues for over a decade and now your daughter who has a range of mental health issues as well for years has just tried to commit suicide. Seriously, isnt it about time you got it, that you did something to get it, understand it, learn about it, I dunno its a significant part of your families life its probably something that you need to be across. Not to mention, you suffer significantly from some kind of mental health issue(s), I would stongly suggest that depression would be something that you face.

[tyme]

Oh @ClockFace ,

I'm so sorry to hear this is still the case. After reaching your post, I'm just curious as to whether you have tried hydrotherapy before? 

I can imagine that not being able to move around pain-free, it would affect your sleep. Not to mention, you probably can't sleep because of the pain!

Sounds like there are a myriad of things going on.

Can you think of even ONE thing you can do as part of your own self care?

[ClockFace]

I had my night meds which included the med I had earier today, which I anticipate, but I thought I felt out of it before. Im gonna go to bed shortly and hopefully ill get a decent sleep. I sucked on a antiaesthetic lozenge which has numbed my tounge a bit, which means its not so painful to swollow etc. which again hopefully means Ill have less trouble falling asleep. I really should have something to eat, but Im not really hungry so Im not gonna bother, if I wake in the night and Im hungry I might eat then.

I got a couple hours sleep and then Im up again, not exaclty wide awake but Im not able to sleep again at the moment. I might a bit later on but at the moment, Im awake. I am also really pretty hungry. I dont know how someone who has had as little sleep as me recently can fall asleep and only a couple hours later wake up. I actually thought it was early morning when I woke up. But if Im asleep, Ive had no real sleep lately, why would I wake up until Ive had a decent amount of sleep.

I said in an earlier post that Dad doesnt get mental health, but thats not exactly true. He doesnt get what they cant give physical evidence for, however understands depression in the context of something they have physical evidence for. As an example Dad doesnt get Mum's depression, eventhough for the most part, if not all of their marriage she has battled depression. However, since learning of the MRI result regarding my spine, Dad seems far more understanding about my depression, as if the two things are linked in its instigation, but my other issues still dont make sense to him.

Its not that he doesnt understand its what he does/how he acts as a result. There are plenty of things in the world I dont understand, I have a very high level appreciation how an engine works but I dont understand them, the human body and all its parts, my sister, there are heaps of things I dont understand, but I dont ignore, belittle, deminish. I dont look at the human heart and say I dont understand this, therefore I will discard, complain that it doesnt breath for me, etc. But Dad is like that with mental illness, my sister is in a bad way, she is in hospital at the moment, you tell Dad that she is sick, he doesnt get it, he cant accept it. He went and saw her and she acted completely out of character and he couldnt understand why she would do what she was doing. Shes sick, nope, too much for him to grasp. What I cant understand, fine you dont get it, why cant you accept it. Why cant you just say that you dont understand, you dont need to understand, shes not well is enough, Ill be there for her as much as I can and not take what she says and does personally.

My back is a different thing though, while it wasnt on a scan that proved I had physical issues Dad didnt really support or even accept that I was in massive pain. He didnt really come out directly and say anything, but there was an attitude, a way about him that made me aware that he wasnt behind me in a meaningful way. Then comes the scan with the evidence that there is multiple fractures, all the sudden he can understand Im in pain, amazingly he seems to be able to understand why I would be depressed, he misses the point that I was depressed before the pain, the pain has just made the depression a shit load worse. Initially it was nice that Dad finally understood my pain and depression but as I thought about it, I realised it was a fair kick in the guts. It wasnt until the results of the scans came in that Dad actually believed that I was in the pain I had said I was in all these years, because now there was proof, now there was a reason. Before it was a claim, it was nerves, it couldnt be seen or proved, it was just my word and apprarently that wasnt enough. However if I were to question Dad on this, he would say that he never doubted me, that he always believed me and was always behind me. With the depression, there is now a reason, Im in pain, but the reason for the pain is ligit, so I have a reason to be depressed, alteast one Dad can understand. It shits me beyound tears, there is so many reasons in my life for me to be depressed in that  way but I have Major Depressive Disorder, not to mention Bipolar 2 which has a significant depressive aspect. They might appear similar but there are, in my way of thinking, two types of depession, the more common reactive depression, ie depression as a result of an event or events. Then there is depression, ie depression without external instigation. I suffer from both, I can be depressed about a situation or I can be ok with all my circumstances and still end up depressed just because Im depressed. Dad can accept Im depressed as I have a reason, but when I didnt, when I was depressed because I was depressed and there wasnt much else reason wise, Dad couldnt understand that and I should just stop. So while he is more appreciative of my pain and depression, he doesnt understand, he doesnt actually get what I am experiencing, just a watered down version of it.

The thing with Dad is that if he doesnt understand mental health, he doesnt understand what you're dealing with, you essentially aren't dealing with it in his mind. If he cant fathom it, it doesnt exist, almost to the point of you're a lier. He doesnt think much of psychologists or psychiatrists, its all bullshit, though he wont just come out and say it, he has an attitude about it all, that gets worse when you tell him he needs to see a psychologist and work his shit out. On that note Mum is also completely against seeing a psychiatrist, though clearly needs  to see one and get treatment. She has this thing that they just want to lable you, that if they dont diagnose you with something they cant claim the appointment on medicare, basicially they just want to force a diagnosis, a lable on people regardless of it being true, well considered etc. She has this belief that there is no way that in an hour session they can determine enough about you to make an accutate diagnosis, which I tend to agree with but its more they cant make a complete diagnosis, they can however determine the very obvious, overaching issue you face, diagnose on that and then work with you to determine any other issues, treat the original issue, if its determined that this is correct and develope a complete diagnostic picture but this takes time. Mum says that the diagnosis follows you and future psychiatrists just go by that, which is correct within the public hospital system. But the idea is usually, they do their thing and then the patient moves to a non-hospital psychiatrist who re-evaluates and determines from there. All this just encourages Dads position on it all. None of it helps me though, for so long my diagnoses of bipolar 2 was made too quick, it was this, it was that. Mum in particular has decided she is an authority on mental health and the system behind it and therefore can judge the ligitamacy of my diagnosises. Which, when combined with Dad not understanding mental health, just gives him more "evidence" to  believe its not ligitamet medical science or its all crap, whatever he believes.

Dad doesnt understand mental health, Mum has a warped understanding on the system, though the system isnt great Ill give you that. When she wants to, she will pull out her depression card, more so in the respect she understands mental health. She went to a facility, a christian facility with what I think is some dangerous teachings and she looks back at this as a pivitol point for her and that what she learnt there is vital, though doesnt live it, but its not in line with current best practices. Because she was there for a while, a couple of decades ago, she thinks she is an authority on mental health, that they were an authority and that what is happening to my sister and I isnt what should be or better could be done. This does nothing to help anyone, including my Dad who is hearing mixed opinions and he has a strong tendancy to lean to the one he prefers not so much the one that makes most sense or is most supported. It doesnt help that Mum is very much a person who thinks her opinion is correct, regardless of the evidence or lack of and its not just that, she imposes this on others. You can think what you want but when you talk to her you better talk as if you agree with her or it will be a difficult conversation, it will stop being about what it was meant to be and be about her opinion and why you dont belive her.

They are both shit about mental health in their way, what gets me is they both have their issues, Mum has kinda accepted hers but not really, Dad hasnt really. I think there is an element of Dad that if he accepts he has depression he will end up like Mum or something. Like they will confirm he has depression and that will trigger something, while he is in denial he can keep pushing. He has this thing at the moment about not giving up, that unlike the rest of us he doesnt want to end himself etc. He has been there though he denies it. My view is if he really wants to stay that way he needs to get help and if he actually wants to be there for the rest of the family he will. Though, unlike Mum and my sister, I dont see this as needing to be his driving force, you cant work at your mental health from the point of view of helping others, it first and foremost has to be about helping yourself. Once you are in a better place, once you're dealing with your own mental issues, then you can properly help others. Doing otherwise, puts you and them at risk.

Mum looks to Dad to be the saviour for her and my sister/family all the time, regardless of his own illnesses, mental or physical and he just isnt. We are all our own saviour, we are all responcible for our own actions or inactions. Others can be there to help, to support, to the extent that they are available to do that, but having the expectation on others to support ourselves or others at their own expense isnt fair or right, people, even healthy people can only give so much before there is nothing left to give and Dad is pretty much at that point, he didnt have much to give to begin with, he isnt that kind of person, which isnt meant negatively, he has been through, what the rest of us have been through supporting each other, maybe in different ways etc, maybe he hid more, maybe he coped less. You can expect him to step up all you want, but what if he is already most the way up a stair case, what if he has been stepping up and there isnt another step for him. Just because you cant, doesnt mean he can, everytime.

Ive woken up at 5am, I got a bit of sleep. I know it was after 12am that Mum and I stopped talking but I dont think by a lot and I went to bed not that long after this. Im still really tired though, Ive dozed off a couple times  this morning. I was going to do my blood tests this morning, but I was very keen on an iced coffee and that this won out.

I was up for a while but ended up back in bed for a bit, I must have slept well because I had really intense dreams. I dont remember the dreams, something about being sick, but really off topic, I dunno was weird. Its unusual for me to dream at all, well to remember them. Im gonna pop into the clinic and drop off a sample but then Ill come home and I dunno, write some more, maybe go back to bed. My shoulders are really painful, both of them. My back isnt great, but its manageable at the moment. My  tounge is driving me up the wall, its what woke me up a moment ago, I couldnt deal with the pain and discomfort anymore and still be asleep. It feels almost like having a mouthful of something really dry constantly. Its primarily just uncomfortable but every now and then, doing anything with your tounge hurts heaps. Talking is actually starting to be somewhat uncomfortable to do.

I was thinking a bit earlier that Dad started to go back to church and then started pushing into it with other meetings etc. all the while things at home are seemingly getting increasingly more difficult, more stressful. There was/is a bit of resistance to Dad doing this, a bit of annoyance and frustration over it. Personally, I didnt/dont care, if he felt better for a few hours a week then whats it matter, if he was at home there is a good chance he would be out the back doing something, its not like he would be spending that time with one of us talking about how we feel etc. He wouldnt be engaged with us, he  would just be doing something else. Atleast with this he is out the house and he is with other people.

I dunno, Dad might have just been looking for something to get him out of the house and around other people and he has a history of being involved with church so he went back there. He could have felt that all the bad shit happening to us is because we no longer go to church or he started back out of desperation, not knowing what else to do, feeling helpless and hopeless, he goes to church as a way of doing something. Whatever the reason, it seems to bug my Mum and sister. I know, as well as they do, he would present himself in a favourable way to those at church. The information he would provide them would be one sided, favourable to himself. Outside home, Dad is a different person, our relationships are different, he presents as a model husband and father. Then he gets home and its back to his normal self. You know the guy who can donate money to a number of charities but not give his wife some pocket money, eventhough he provides for her what she wants, he cant give her a small amount more for her to have as her own or understand why that is important. I dont understand why anyone cares that Dad goes to church or anywhere else for that matter, I dont care how he presents himself or our relationship. I dont know them and its unlikely I will meet them in a capacity of his son. So do what you want, if it works for you. I do care if he brings the religious of it home and tries to enforce it on me. I care if he acts superior to me, for any reason, not just because of the church thing.  My sister and Mum point out his flaws, particularly failings as a husband and father according to the Bible as if that is some reason why he shouldnt go to church or something. We all have flaws, we all fail to measure up, some in a big way some in a little. I know he isnt perfect and never will be, so I dont hold that against him, I also dont think I have any right to. They sure do, they are incredibly happy to drown in their own failings and point out Dads as he wades in the shallows. Im very much of the opinion that its human nature to point to others failings, especially when we feel they have failed us, but we need to then stop and look at ourselves and our failings first and then stop. Our purpose is to look at ourselves and improve ourselves according to the beliefs, morals, etc. we determine to be right and admiral. This is a continual process, it doesnt stop, all through your life you will strive to be better today than yesterday. If this is the mentality we have, we stop looking at others so much, with the purpose of pointing out their flaws. The reason we point out others flaws is that it makes us feel better about our own.

I dont think I have a problem with people observing others, I like to observe and try and work out why, my family are the way they are, do what they do. Its not about judging them right or wrong, Im not looking for their flaws. I might find reasons why I feel how I feel about different things. I might understand me more as a result. I might understand them more too, if I remain non-jugemental, observant only. I can sit down and examine what this person or that person did wrong or right, how they failed and how they made everything worse. How if they had done this or that differently our life would be better. We can sit and judge their every decision in life against our standard, against the outcome achieved and potential outcome, we can determine that because they didnt meet the best possible outcome, based on the outcome achieved and the theorised outcome that could be achieved had things been done differently. Im not saying that people dont fail, Im not saying they dont fail and fail in such a way that it impacts your life long term. Im not saying people shouldnt be held accountable for failure. Im saying that life isnt about pointing out failure in others, observe what they do and learn from it, recognise your own failures and grow from them. If someone fails you, address it, talk to them and accept what they have to say, then let it go. If they fail so much and you cant continue to address it, address them and leave before you become bitter. Here is the big point though, it is all too easy to see the failure in others and not yourself. You determine that the failure lies in another and eventually no one else but the other. Your own involvement, failures etc are insignificant or worse still, didnt happen, you re-write the past to suit your own narrative. If you are looking at others, at your past with them, how they influenced things and you are judging things like their motive etc. you are examining things rather than observing, you are determining how others are at fault for the outcome and if they had only done this then the outcome would be different. Then you arent observing, you are judging. You have decided that you are better than someone else and in a position to judge their failings and hold them accountable for them. Again the idea is to observe to learn, not to correct.

Having spokent to Mum a fair bit recently, she acts like she has a right to instruct Dad and he should follow her instructions to the letter. If Dad did as I told him. If Dad did this or if he did that. He should have known to do this or that. And so forth. I dont think that there was a lot of actual discussion from either party, they both have a this is whats going to happen mentality, they dont enter a conversation open to listening to the other party. They also dont come to the table willing to be honest. Dad so often has thoughts but doesnt say anything because he doesnt want a fight, hes going to be wrong anyhow etc. Mum often comes to the table, talks, Dad talks and Mum doesnt let him finish before she is talking over him, reiterating her point as the only logical and viable point.

Dad isnt Mums puppet, he isnt there to do her bidding, none of us are.  The more she is in her bedroom etc the more this is the case. Its also not just do this, its this is how you do it, this is when you do it. Even if you dont want to do what she wants you to do or be involved, she said so you do. Making her coffee is a prime example, how it made me feel, what it did to me that doesnt matter, she wants a new device and for me to go back to making her coffee. She talks about a house they should have bought, I think if I remember correctly their offer wasnt accepted. The idea of buying this house in Mums mind was to live in the house area and build on. The house they  would have bought was tiny, we would have been at each others throats constantly. Add that since we would have moved in we have all become very unwell, the building on and renovations wouldnt have happened but if they did they would have  added so much more stress it would have been unbearable. Mum has this thing that its the house that causes the bad things. She is right, if we hadnt moved here then she probably wouldnt have had the temporary fencing fall on her head but her heart would have still gone bust and needed to have surgery etc. Dad had Non-Hodgkins Lymphoma for years before he was diagnosed, just cause it happened here doesnt mean its the house. There is nothing though that can be attributed to the house. I get very annoyed with her mentality that she can do as she pleases, people have to work around that and should do as instucted.  Then she accuses other people for doing the same thing, primarily my Dad.

While I have always been aware, its been a bit of an unspoken thing. Both my parents are firmly entrenched in gender roles. Mum said recently about my sisters role being to have kids and run a home and my role to work until Im 65. It was kinda interesting hearing her just come out and say that. I find it interesting however that the role of cleaning the house was pushed onto Dad and I as often as possible, eventhough we were both working and neither my Mum or sister were. Outside jobs were certainly a guys world, but Dad shouldnt be doing that he should be inside doing stuff there, which  typically is the womans world but my Mum and sister have bailed on that. As much as gender roles seem to be a thing for them, Mum has decided that she doesnt really want to participate in any of it, she has also effectively decided that my sister shouldnt have to participate in it either. There is this attitude that my sister should just be taken care of, my sister has the same attitude. My sister said about Dad having supposed to be her provider, which is fine I suppose but its like he doesnt have to give you everything you want, its what you need. Because my sister is a girl, she should automatically just be cared for, but do little in return. Me however, I should work and do the housework etc, for nothing in return. Its gender roles but it isnt. It does explain a lot, it goes a long way to explain some of my feelings and why I have such a disconnect in my family. I dont buy into any of the gender role crap.

I dont give a shit about gender, race, religion, any other defining sub-group you can make. From a generalisation point of view, statistically you can make assumptions people from different groups are better or worse at different things but that doesnt account for the individual. An individual can do or be anything regardless of anything they are born with, it depends more on desire, opportunity, life experiences etc. A person should fufil a role based on their capability rather than a pre-defined expectation based on a random aspect of their life that they were born with or obtained. It would be illogical to push me to work if my partner had a masters in a well paying field that she really enjoyed. Im disabled, with limited education and hiring potential, I would get a low/med paying role at best and be subject to significant time off due to my disabilities, reducing my income potential further. Because I am a man, you would send me to work and have my partner at home raising kids etc. however the reverse, financially at the very least, would be much more intelligent.

Ive not been doing well lately and today isnt an exception, today it could be the worse day so far. I got a bit of sleep over night, not like hours, but a bit. Ive had a bit of sleep during the day today. Shortly Im gonna have a go at some more sleep. The last time I went and tried to sleep though, I had a lot of spasms, in the  end I gave up when I slammed my head into the pillow, it scared the crap out of me. I dont know if it was a spasm or a psychotic thing but it ended my time in bed. Psychotic things are kinda common, it seems almost everyday something really out of the ordinary happens, something that I cant explain away. The disassociation stuff is getting worse, more common, more intense and longer lasting. This dizzy/wonky feeling is also getting worse, it lasts longer and more intense. I seem to spend increasing amounts of the day with some kind of impairment to my perception. Im having more trouble with my spasms than normal, my pain varies but even on days with less pain Im having very intense spasms like arms swinging around the place. The spasms of my leg muscles are much worse. Its like the whole leg has cramped or both and then they go a step further and start to intensify and twist. My depression is getting much  worse, SI isnt common, its just part of my normal thought processes. Sleep has been almost exclusively impossible for me to get and if I do its only for short periods of time. Im generally getting a couple hours a night but thats it. I lay down throughout the day, mainly to give my back a break, but even then I dont sleep. It doesnt matter how tired I am or if I have had additional medication to calm me down and fall asleep, I just dont sleep more than 2-3 hrs every 24hrs on average.

Then there is all the sources of pain, my shoulders are both very painful, eventhough I had an injection into the left one, nearly a fortnight later its not helped. My right shoulder is rapidly getting worse. My back has days where I dont need extra pain meds and days where I cant eat enough to deal with the pain. Migranes and headaches have been pretty good. I have, unbelievably, got an infected and inflamed tounge, seriously how is that even a thing and who gets it? Its tolerable most the time, however it can be quite painful to swollow and eat.

Ive had a few visits to ER, including an ambulance ride. The ambulance ride turned into me needing to see my cardiologist because I was in AF, with a really high BP. Im having to have an ultra sound to check if my prostate is enlarged. I have a heap of blood tests I need to do, including one to check that Im not malnutritioned. I have a bone density scan to see if the reason for my spinal fractures arent to do with my bones desinergrating. Im seeing a neurosurgeon on Monday. There was a cancellation and they put me in, so I am assuming I was triaged quite high. Im still waiting to see my new psychiatrist, I cant afford to see my psychologist until next month.

My sister is back in hosptial. I know her GP sectioned her, but what happened exactly Im not sure. I cant go and see her, the last time she was in hospital almost broke me and my sister hasnt made that any easier since coming home. I havent really had any treatment since she came out of hospital, most of my psych meds were removed a while ago, so I dont seem to be on much in the way of psych meds, something my family cant grasp. So, dealing with her on any level isnt something I feel I can do or should be asked to do. Mum and Dad are trying to pack a bag for her, for Dad to take to her tonight. Its been going on for well over an hour. Im not really involved, again, I cant do it. There is all my shit preventing me helping but I cant deal with the BS that is packing a bag for her. She gives hints as to what she wants and where it is. But not exactly what she wants and she isnt happy unless she gets exactly what she wants. Dad is currently taking photos of pink travel mugs and sending them to her to find out which one she actually wants. I dont understand how my sister cant just be happy to deal with what she has there, get some clothes etc. but thats it. How does she not realise how much unwarranted, unhelpful, stress she adds just regarding getting a bag of stuff brought down. I wasnt involved but I know my blood pressure rose and I started having issues with depersonalisation.

Mum, my God. She sits in her room all day, Im not really that sure what it is she does other than sleep. She isnt well and her depression is really bad. But she can cause so much stress, especially for my Dad. We talk a fair bit at the moment, Im learning a lot, discovering stuff about me and our family, Im really enjoying our talks. But she doesnt make her appointments, Ive tried to get her to ring about her NDIS for a couple weeks, but she forgets. She goes on about the same shit day after day, she is convincined she is right about every damn thing. Money is a serious topic, she is very protective of her money, but at the same time will allow my sister to spend as she pleases. My sister can essentially do no wrong in my Mums eyes, Mum will always find a way where its someone elses fault, completely. Seriously, my sister could be on her own, no one aware she has even left the house and do a dumb thing and it will end up someone elses fault for not realising she had left or something. Mum will literally sit and tell me how she doesnt favour my sister or how she treats us the same and always has and then transfer my sister a few grand without expectation of getting it back, let me know she did it and do nothing for me, because I work or some other weak ass justification she comes up with.

Dad, Dad has just taken to complaining all day about everything. He is less and less understanding about anything. He is concerned about the cancer coming back, he says he is feeling really sick more often so I think that has him concerned.

Im not working at the moment, Im on salary continuance payments, my day pretty much consists of writing, watching streaming media, talking to Mum, laying down to rest my back, trying to sleep and failing, seeing medical and support people. Pretty much it boils down to doing what I can to make it from one day to the next in the least amount of physical and mental pain as possible. Money is an illusion, most of what I get goes on medical expenses and then some, I have no idea how much I spent on my previous pain specialist only to end up in far worse pain than I was when I started with him. There was so much hope when I started with him too and in the end, well Im this. Half the time I cant feel half my arms and hands, the other half Im in heaps of pain. I lay down and within a short period Im spasming, this has become a bit more entertaining with my arms waiving around the place or my entire body contorting. I start trying to get a decent sleep at like 8/9pm and I end up giving up sometime the following morning. In between Im up and down, Ill sit at the kitchen table and I will doze on and off for hours. I spend my day exhusted, if Im not being overly entertained Ill kinda get a bit dopey. I hardly eat a thing, a donut and half a Coles meal if Im doing well. Now that may be an issue, I feel sick most the time, Im in too much pain the rest of the time. If Im not feeling sick enough Ill have a run with opioid induced constipation, which will definately make me feel really sick, plus the added bonus of bloated beyond belief and even less likely to eat a thing. For hours a day Ill feel like Im completely disconnected from the world, that Im seeing my life through kinda like remote viewing, if Im not like that Im having visual, audible or tactile hallucinations or Ill just completely space out, there is absolutly nothing going on upstairs. I used to have issues with controlling my pee, once I was done. I got on medication, its not on PBS so its expensive but it works. Now, for shits and giggles I cant pee. Ill go to the loo and often as not give up trying before there is any success. My tounge drives me bonkers, it feels way too big for my mouth. Im sucking on anaesthetic lozengers to reduce the pain. Regularly I have to have a camera go up a hole I dont want it to, to see if I have new tumors. Now they are looking for prostate issues, so ofcourse my first thought is cancer. Like with the AF, seeing how Mum is with her AF, I really dont want to have to deal with that. I try to talk to Mum about whats going on, how Im feeling etc. and the speed in which it becomes about her is amazing. Talking to Dad really isnt worthwhile and I cant really talk to my sister given her circumstances. I speak to a councillor every fortnight and every few weeks I have a psychology appointment. But whats the point in talking, I get as much from writing as I do from talking to someone. Nothings getting better, shits just getting worse. Im pretty concerned about what Monday will bring in regards to my spine at the same time, thats the focus everyone has. They are all focused on my sisters mental health, for good reason. If she is home, the focus is gone. They can only really be focused on one thing at once. They are missing entirely how bad my mental health is and how difficult a time Im having with it. I talk to them about the hallucinations and its like Im telling them that I went to the loo, its not like Im asking a lot, just acknowledge what Im saying is that so much to ask. When I say to you that Im dizzy/wonky and I worry about falling over, dont just pass over that, you know what thats like, its like AF, you know what thats like too and unless its about how bad it is for you, you're not interested.

I know I just dumped heaps and I probably repeated myself, Ive been having a really hard time dealing with things for a while and its coming to a head at the moment. Ive taken my night meds and Im gonna go to bed in a sec, Im not hopeful that I will get heaps of sleep but Ill try. I cant help but think if I can get a few nights of good quality sleep that Id feel heaps better. I just dont see that happening. I know my GP is concerned with the number of medications Im on. She appreciates that I need them, but also that they are probably the reason I feel sick all the time. She is not keen to add any other meds unless she really needs to, we both know that the psychiatrist will make some changes to my meds. So adding sleeping tablets, muscle relaxants etc. is probably not gonna happen from her.

[ClockFace]

Im exhusted and Im sitting at the kithen table dozing on and off, by dozing I almost mean restart the movie I missed most of it. Its nearly 6am, I think Ill head back off to bed again and see if I can sleep again. Its so frustrating, I can be dozing on and off at the table and go to bed and be wide awake.

I had a little more sleep, I woke up to that vomiting taste again. Im still really tired, I dont think it will be that long before I try and get more sleep. Im pretty drowsy, my shoulders kinda hate me but my back is tolerable. What is not so tolerable is all the boils I have been getting lately. The back of my thighs have 4 or 5 current boils, making sitting down petty painful and they dont want to burst, but the do want to hurt the whole time Im seated. I have one on my butt that I cant reach, which is really annoying.

Back to bed for a bit I think, Im really drowsy. I slept a few hours more, I still feel pretty tired, I might go back to bed later. Im gonna head into Coles soon, Im just waking up before I do anything. Dad keeps talking about this and that, Im trying to keep up but Im not awake enough for it just yet. I dont know how many years he has had the same the thing from Mum, my sister and I that for atleast 1/2 an hour we are no good, we arent awake yet so dont try and engage us in conversation etc. just let us wake up.

Im not 100% sure whats going on but Dad is in a mood. I think my sister has a new list of things she wants brought down, mainly from the shops. She vapes and smokes generally, I dont know why exactly but who cares. She has asked for both and its blown Dads mind. Dad asked me what I was doing today and I said that I was going to Coles, he has now gone in to get stuff for my sister, which little doubt includes going to Coles as he needs to get smokes. Did he ask if he can get what I need, no. It probably didnt even cross his mind for a second.

Im going to have my morning meds in a sec, they are really late, then Ill go down and check on Mum. Her and Dad are going to see my sister today so I will have some hours to myself which Im looking forward to, though chances are Ill sleep through most of it. I  did kinda crash out last night, I woke up a bit but I did sleep a fair bit, more than I have in quite a while. Im still really tired, so more sleep hopefully is to be had.

Ive woken up, well Ive had the time to wake up and it turns out Im not goinng to, not really today. I feel really vacant mentally, I dont feel well, my tounge isnt good today, its quite a bit sore, talking is hard, I think thats making me feel like my throat is sore as well. I really dont feel attached to anything at all today, reality is so far removed its in another dimension, I just took my tempreture and thats 37.7 degrees, so thats not great, I feel like I am looking through things not at them, kinda. I dunno, I have a very  odd set of feelings/sensations, I feel vacant, I feel like I am floating in a vacuum, detatched from anything of substance, disconnected from any form of reality, I can see things but unless Im paying them attention its as if Im looking through them as if they arent really  there, like Im looking at a hologram, Im really tired, I have almost no energy for anything, I seem to  miss bits of time, like I was with Mum talking and I was jumping from conversation to conversation without any recollection of what was said.

It amazes me, I told Dad what my tempreture was and his response was, what is it supposed to be. He is 67 and he doesnt know what tempreture we are supposed to be at, or that 37.7 is not good, like its pushing the need to go to ER bad. Not only is he 67 he has a very sick wife and two very sick children, as a parent, a parent to normal children you should know what constitutes a fever and what fever constitutes taking to the hospital or getting an ambulance. I realise 37.7 isnt amazingly terrible, its not good, its probably not great with all my other issues as well. To be honest Im not suprised I have a fever, I have an infected tounge, kinda comes with the territory I would think. I have the neurosurgeon tomorrow so I dont think I will push to do anything until after that, the last thing I want is for something to come up that would prevent me from being able to see him. Its the most important appointment on my calendar at the moment.

Im not really sure what to expect tomorrow, partly because I dont know the full story about my back issues and partly because I have been told for over 1/2 my life that there is nothing anyone can do. Even Dr Cornish said the same thing. That said, from a little research Ive put in, I try to avoid Dr Google, if its fractured vertebra like Im told, they might be  able to put concrete into the vertebra and correct things. Its not going to fix everything, it might not resolve all my pain, but its something, it would be someone doing something about my screwed up back and psychologically at least it would make a difference.

I just had a Nutella sandwich, one of the most painful sandwiches Ive ever eaten. My tounge feels like really coarse sandpaper, it feels constantly dry and like I have eaten a bucket of ash. I dont  know what it is but eating is becoming more and more painful, I assume its something along the lines of it being swollen so new tounge that would normally be protected is exposed. I dont find myself typically hungry, so I am almost thinking that rather that deciding that I should eat because I havent eaten for a long  time, that I am going to be more along the lines, Im not hungry, I dont particularly want to eat, it hurts to eat, so Im not going to eat.

My mate is hoping to catch up for his birthday, I filled him in with whats going on with me as I have told him previously. I dont know if he knows what to say, there isnt anything he can do, my situation is so ridiculous its hard for people to comprehend, even my family struggle, though I think thats got to do with them dealing with their own issues. I know I spoken about it before but its incredibly difficult to be apart of family where every person is incredibly sick. We each have our own issues to deal with, at the moment I have a lot of issues, some of which are pretty serious. Thats not to say other peoples arent serious, I mean my sister is in hosptial cause of hers so you would agree hers are really serious. Dad is feeling sicker and sicker, so he is concerned about  his cancer. He, like my sister is in this state where they wake up and they are already angry and it takes so little to push them from being angry to ready to blow. He winges all the time, as does my sister. There is really nothing anyone can do that meets his approval, even if someone does something really kind, considerate and thoughtful for him or her, there is something that he or she can pick out and take issue with. Sadly, Mum isnt much better, she expects perfection in everything, no exception. Everything must go her way, people must do as they are told and how they are told and importantly when they are told. This is a bit of a failing of my sisters as well, but she takes it a step futher. For Mum its to do with being in control, for my sister people doing that is an expression of their love.

The thing that irritates me is, now that I have fallen off the map, Dad, despite his illnesses is relied on so heavily by Mum and my sister to do so much and cops so much abuse in the process. Dad isnt perfect, not by a long shot, after nearly 50 years, you would think he would know how things were done by the family, that he would know how Mum and my sister like things. That they wouldnt have  to spell it out every single time. However, it would be helpful if they could accept the help he gives, how he gives it and appreciate that he isnt well and while he is outside a bit, its less often than it used to be because he is sicker than he was. It would be good that they didnt rely on him for stuff because they dont feel  like doing it.  It would be good if Mum got up and got things from the fridge in the laundry or kitchen for herself rather than texting Dad to do it, etc. It would  be good if my sister could just accept things that werent perfect, he didnt find the exact cup you wanted etc. It would be good if they just took a step back and acknowledged all that he is doing and that it is not possible for him to do everything, perfectly, without fail, while being very sick himself. Stop, FFS, stop expecting that Dad will somehow, all the sudden, out of the blue, start to provide emotional support to me, or my sister/Mum. But mainly me, stop trying to palm me off to him and acting suprised when he acted as he normally does, when he doesnt provide support, when he doesnt understand mental illness, which he never has, dont be suprised, dont roll your eyes, etc. if you are expecting him to help me on this issue, you know full well that he wont.

How about you as the other parent, take your advise and step up. It could be as simple as when I talk to you that you listen to me, listen to the pain behind what Im saying, appreciate that this doesnt come easy to me. So, when it pops into your head how you can make the conversation, currently about something Im trying to deal with, about you or more frustrating for me, about my sister. I get using personal experience as an example, but you're not, you're using them to move the conversation to be about you and your experiences and feels. Today, I was talking about how I felt that Dad, seeing what happened at school to me, didnt move us to Adelaide earlier. None of us wanted to be there, except him, there was reason after reason to leave, but he chose to stay and us along with him. Amazingly  Mum saw this as an opportunity to complain that he didnt move us sooner to make his WIFE happy. Right there I did realise that its been far more about her than even us kids. We spoke about something else and it was that she spent 19 weeks in a facility. From listening to her, she chose to stay the last 17, it was probably a wise move, something she needed to do, but she blames him for the whole thing. When she talks about it, its what it did to her, how it affected her. I have never had a conversation with Mum about how the whole thing affected me. The impact on my life. I dont think it has even really crossed her mind, the whole event is talked about as only being about and affecting only her. Not to mention the periods of time before and after she left and came back. It would be great that when I sat down and talked with her about something, something from the past or something affecting me now, that we actually talked about how it is affecting me. You cant do much because you are sick, but surely you can, after all these decades, provide me with some support and talk about things without making the conversation about yourself.

My tempreture keeps fluctuating all over the joint, I feel really pretty lousy. Im really tired, pretty flat. I have the neurosurgeon tomorrow and need to have a shower before then, I keep putting it off. I dont even have the energy to take my clothes off, let alone get into a shower. My sister rang, Mum and Dad went and saw her today. I havent spoken to her since she went in, we've sent a few texts but thats it. I would have thought that when my sister asked about me, which she would have, Mum would have told her abou my tounge, maybe not the prostate but the tounge at least, but no. She let me know what led up to her being in hospital. We had a short chat but I made sure she knew I was still there for her.

Im desperate to make sure I can see the neurosurgeon tomorrow, its pretty vital to me. I need to do what I can to stay well enough to manage it, even if I drive from him to ER I dont care. I have my normal GP on Tuesday, Im playing with the idea of cancelling it and moving it to Friday. Money is an issue, but test results wont be back by then, so it wont be that benefital. Ive started to really ache, pretty well all over and I have a bit of a headache. My back is starting to hurt a lot, it hurts all the time, but its getting bad. Damn thing drives me up the wall, I can have days where pain has settled, where I dont need extra pain killers then for no apparent reason the pain returns and Im needing more pain killers than Im allowed to take. Generally, being on the medication I am Im able to manage the peeing after I have finished in the toilet. For some reason today, not as well as normal, which has been rather frustrating. Its not been bad, but its enough that Im noticing. I had a boil last week, which we were able reduce but not eliminate with magnoplasm, Ive now got a bunch more, its becoming really uncomfortable and painful to sit down. Im gonna have to get a script for some kinda decently strong antibiotics to deal with them. I said to Mum that I know Im fat and that Im sitting a lot but this is ridiculous, Mum said that it looks like in some places they are one on top of the other.

Im gonna have my night meds shortly and try and get some sleep. Im pretty dizzy/wonky at the moment, well I have been for a little while. All these different feelings, perceptions, etc. are really hard to deal with, I go from seeing the world one way, to another, to another and so forth, its a bit of a novelty to see the world as it really is. It doesnt really seem like a huge deal but while I know that how I feel isnt reality, there in lies the issue, I know that Im not seeing reality and I want to see reality. Knowing that your mind isnt right is an incredibly difficult thing to be aware of and know that there is nothing you can do but continue to exist as is until it passes, if it truely passes. Am I just changing to another perception, am I truely experiencing reality, is what I think reality is, isnt actually reality? I would concede that everyone percieves reality in their own way, but there is a generally agreed experience that is considered to be reality. I wonder if I actually do experience this or if what Im experiencing is a distorted version and I am just unaware of it. It might seem like Im over thinking it or Im reading into things but its a thought process I have and I assume people in my circumstance would have. You spend such a significant amount of time where your perception of reality is so distorted that you can tell, you are aware of it. So it stands to reason that there would be time where you are unable to tell and that those times may be when you think that you are seeing reality clearly.

Im completely broke with about 10 day left until I get my next payment. I have some rebates that I am waiting on, I dont know if Im actually eligible for them though. Not that I shouldnt be, that I have reached my limits. Im hoping that I still am though, as I really need that money. The Neurologist cost $450, the standard rebate is only $120, but I am also hoping that will be much more as I have reached my safety net.

Its nearly 11pm, Im getting well tired, Im pretty well ready for bed. Im having a anaesthetic lozenge, a smoke and then bed. Im feeling a bit unsettled, not in a mania kinda way but in a lathargic way but in multiple beds. Im really worn out, Im really feeling average. Plus the night meds have kicked in so I feel a bit sedated.

[ClockFace]

I looked into the neurosurgeon Im seeing tomorrow. He seems to be a pretty intelligent fella, he is one of the directors of where Im going tomorrow and lead clinician. He is a pain specialist and anaesthesiest as well as a neurosurgeon and spinal surgeon, so I would have to think he has to have a clue. Id have to think that whatever he says and recommends tomorrow would have to be as good as Im gonna get. I would think that I will go with what ever he recommends, he has the education behind him to know what he's on about. That said I thought that about the last guy. I am really hoping that this guy doesnt turn around and say I have to lose x amount of weight before he can operate etc. I know  my weight will come up, it will be an issue but thats ok. I would be suprised if he didnt mention it. but Id be annoyed, really frustrated if it was used as a reason to not do something that could help me, could reduce my pain.

Im feeling really out of it, I dont know if its the meds or something else. Im gonna go to bed in a moment, Im fairly drowsy, blinking my eyes is taking a few minutes now.

I slept most of the night and pretty solidly too. Im still really tired, I could easily go back to bed and sleep more. Ive got to go have my blood tests this morning and then I have the Neurosurgeon. So, I kinda got to wake up and just get into it.

I went to one of the blood centres I use and it was overflowing, so I tried the other one I use and the staff member hadnt turned up, so I tried yet another place, never been there before. Had to go into hand, which isnt a biggy. I barely got my arse into the seat they provided, it was tiny even for a normal sized person. I dont know if it was the blood test or something else but my left shoulder is seriously not good, it was ok before I left but now it is really painful. Im now on the phone with my health insurance about my refunds that I havent recieved. Once I have that sorted it will be onto medicare. Im feeling really wonky in the head, Im really struggling with it at the moment. If Im not wonky, I feel completely detatched. Im not enjoying the feeling. Im actually not doing very well this morning at all. Along with all that my anxiety is up a fair bit, this appointment is fairly important and is sorta indicative of what my life will be like going forward. He is going to be the one to tell me if I can be fixed, if I can be  put back together again or if I am gonna be like this forever. Im quietly freaking out. It doesnt help that I havent recieved any of my rebates and Im out of money and smokes. Im gonna have to get Mum some more when I have some money. Im seriously tired, I slept decently last night but I am still finding it hard to be awake. Dad has offered to take me but then he would want to come in with me and I know, I just know, he will ask irrelevant questions or questions that show how little he knows about my condition(s) and how I ended up like this and I just dont have it in me to deal with that, to deal with the fact that he actually has no idea what caused all this to start and what has been done so far or that he has no idea about my diagnoses.

Im on the phone to my private health, been on hold for 35 min and I think I just nodded off, lol. I work in a call centre, out team is not really a phone based team but we do get calls. If we were regularly allowing calls to wait this long we would be getting dragged over the coals, the wait time at Medicare isnt any better.

I really dont understand my Dad at the moment. So Mum and my sister do not in anyway, shape or form help the situation, nor are they innocent in this. That said, why does Dad sit and watch Mum take 3 or 4 steps before having to have a break, trying to get from her room to the car and not get out to help. Mum was really upset that he didnt get out and help, not even ask to carry her bag. He on the other hand remarked to me that it took 15 minutes for her to get to the car. So he timed her rather than helped and this sort of stuff is reasonably common at the moment. He will watch her struggle and unless someone says something, he wont lift a finger to help her. Anything she asks of him, reasonable or not, he takes issue with. He just seems to take issue with anything either says or does/doesn't do. I really dont think that is a matter of him not understanding mental health, he doesnt get it. He doesn't want to, its that simple. If he did he would have to empathise with Mum or my sister, or me. If he truely admitted to himself and truely stopped and appreciated what we go through mentally, he might understand himself and admit that he needs to attend to his own mental health issues. In the mean time, if he isnt going to acknowledge his own issues, he needs to acknowledge ours, he needs to actually talk to us, actually listen, you know like pay attention, retain information. He needs to appreciate that our conditions come with limitations, it prevents some normal responses and interactions, it alters our perception of the world and those in it, most often not for good. Understanding and appreciating this, work with us, dont purposefully get in the way, put stumbling blocks in the way, do things, say things, or act in ways that would trigger our issues, that would make living with our issues harder than they need to be. I get that he wont always get it right, that he wont always act or say what or how he should. I also get that there are going to be times where he doesnt know the right thing to say or do, so long as he tries his best and thinks about it before he acts.

I had my appointment with the Neurosurgeon, I left not feeling overly confident that there will be a positive outcome. I need to have  a bone scan with SPECT, a bone density scan which is already booked for next Monday. The bone scan will help identify where in my bones are an issue, the other thing it will double check is that none of this is caused by cancer. Part way down my thorasic my spine should curve but it kinda kinks, 40 degrees. A number of my vertebra have crushed. This is causing me to stand weird in my lumbar area and then at my thorasic which is causing pain. He said it might be possible that I having the ablations etc were warranted but my back is really over sensitive and this has meant that rather than helping everything became much worse. There will be a fair bit of physiotherapist involvement in the future trying to correct how my spine sits or more so how the muscles work around that. Something about my thighs and glutes, but he is waiting until scans are in before writing to my physio with all the information and directions. Some of the medications I take can cause your bones to weaken, he is concerned that has happened. He was fairly concerned about the combination of medications Im on. He isnt a fan of the amount of pain killers Im on, so he is aiming to reduce them. I dunno, I kinda had my hopes on going there and him just having answers but thats not what happened and maybe thats whats thrown me. I wonder what the bone scan with SPECT is going to show and if there is going to be anything they can do from that. I really expect that I will find out whats really going to happen etc. when my GP reads the report from him. I find that the report is normally more informative and really tells you the plan. I dont know what it is but so often between the conversation with the specialist and what the report says things change, sometimes pretty dramatically.

Ive really struggled today, I have felt really strongly that I am not connected to reality. Like I was living in a dream. I felt/feel very off, like Im living just slightly out of sync with the rest of the universe. Staying focused has been really difficult. When I got home from the Neurosurgeon I let Mum and Dad know what was said and went to bed, I had basically no issue falling asleep, I pretty much just crashed out for 2 hours. When I woke up I felt more myself but still not fantastic. I didnt do a huge amount after that, I obviously wrote for a fair while. Ive taken my night meds, Im gonna go to bed shortly. Ive got my GP and councillor tomorrow, I was supposed to have my support person but I messaged her and asked to postpone the appointment, there isnt enough time between the GP appointment and her. Im kinda glad though, I didnt realise they were so close together and so much on one day, be too much I think.

[ClockFace]

Im really finding it incredibly difficult to keep up with everything Im dealing with at the moment, let alone deal with and face them. I feel like no matter which way I face I am confronted by issues, almost exclusively I am faced with medical issues. If its not medical, its medically driven. Much of my financial issues have been rooted in medical issues. I had an episode which resulted in me borrowing and spending a shit tonne of money, which has been an issue for me ever since. It has held me back financially and been like a anchor around my neck. The episode was the first real indication of a major issue. Ive got no idea how many procedues Ive had, the number of specialists Ive seen, number of doctors appointments Ive had or the amount of money I have spent on medications since my episode. Then there are things like my family who allowed me to accumulate significant debt with them before they did anything and that was to bring me back under their roof, they almost waited until I was in a financial position with them that was beyond repair and then went overboard in their response. If they had stepped in earlier and helped, I might have managed to work shit out. The amount of money my family have cost me because they cant understand or appreciate my illnesses and instead of coming along side me and working with me where I am, they continued to try and force their expectations of who I should be and what I should be able to do. Then there is all the time off work, after exhusting all my sick, annual, etc leave I would end up taking unpaid leave and often a fair bit of it.

I feel like I am doing this pretty much on my own, that I have no one to turn to and get help. I have psychology and a coucillor now but thats a far cry from family support. No one has taken the time to understand what I face on a daily basis, they havent come along side me, met me where Im at to work with me, they have retained their expectations of me of from before I was sick, the expectations of someone who is normal, someone who doesnt face the challenges that I do. Mum has been too wrapt up in my sisters shit, being a friend to her, supporting her and having her back, above Dad and above me. Judging by Mums actions the only person, other than herself, that mattered was my sister for many, many years. I really didnt get a look in at all and if I did it was to reiterate that I was not enough, I didnt do enough, I didnt push through enough, I didnt support enough. Now days its more about Mum, talk to Mum about me and it turns out to be about  Mum or she doesnt remember what you have talked about or the events themselves, even really major ones. Dad, he just expects that I deal with my issues and act like I would normally. Its like breaking a leg and being told to walking it off, he wouldnt do that, he can see the injury, but because he cant see it and only has our word for it, it doesnt exist, its just an excuse. Its a way for me to not take responcibility for my financial position, my mistakes, my choices etc. He will consider every other possible explaination for my mental issues  other than I have mental conditions. Even my physical conditions are treated the same, its only been recently where they have evidence of my spinal issues that he has shown concern, 22 years after I began being in pain. My sister has moments of being caring and understanding, often as not though those moments come back to haught me when her mood changes. She is pretty fickle, she can say one thing to your face and another behind your back, a common trait in this family. Often their opinions change depending on their objective(s) at the time, if it suits them to throw you under the bus, they will. Its impossible to be honest and open with people like this, you  just cant trust them on any level.

The sheer number of medical and mental health issues Im facing is simply overwhelming. Tackling it with very little or no support from my family makes it so much harder. Its not even that I dont have support, I more so have opposition. At this stage Id be happy with simple acceptance, with them amblvalent to my situation. Currently, Dad is being really caring and understanding about my back, I know its a limited time thing though. He's been a bit more understanding of my mental state but only in relation to how the whole back thing would be affecting me, not the ongoing crap that I face every day.

I woke up at around 2 am and wrote most of the above, I couldnt go back to sleep until 6 am. I slept for about 2 hours, Im not exactly sure what happened but I did something to my shoulder and it sent me through the roof, the pain was sharp and intense. Its been a while now and my shoulder is still incredibly sore. As soon as I woke up and got out of bed, I was hit by that dizzy/wonky feeling, it feels like I am repeatedly suddenly dropping. It is incredibly off putting, it makes walking really difficult, makes me fel like Im going to bounce off walls and/or fall down. It does also kinda ruin your mood, you dont want to interact at all. You just want to pull away and try and protect yourself.

Mum spoke to Dad recently about the amount of money that my sister and I have and are spending on our medical needs. The idea being to get him onboard a bit more in respect to helping. I can tell you now that while my sister and I smoke that help will be very limited, he might at a push lend money for medical needs but thats gonna be it. My last appointment was $450 which he lent me and got me to give him the rebate, though knowing I borrowed the money, I am low on money and probably could have done with the cash. Dad has a massive issue with me smoking, Im a heavy smoker and I wish I wasnt, with all my medical and mental issues that are forced to the front of my mind constantly, giving up smoking doesnt even rate but the idea of trying to deal with giving up smoking, the withdrawals and then not having a coping mechanism that I rely on as much as I do smoking. I know smoking isnt healthy, Im not oblivious. I know it will shorten my life, but most the time I dont want to see my next birthday so why would I care about shortening life span, even it will make me sick, Im already there. At the moment, in my eyes at least, its doing more good, than harm.

When I woke at 2, like the nights before where I have been waking up early morning, my head was just going flat out. It was like being attacked by barrages of missles, thought after thought, pounding my head. I can hardly catch onto a thought process before the next one hits. I try and write what I can, try and get as much down as I can and stick to one thought process, hold on to it for as long as I can. In amoungst it I am dozing off because I am so tired, Ive been living off 3 or 4 hours sleep for a really long time, often less. What sleep I do get is broken and light.

During the day Im not bombarded by thoughts very often, generally my head is left feeling full, full and overflowing. Its an odd feeling, its like there are so many thoughts in my head, all at once, competing for my attention. There are so many thoughts all trying to be at the front at once that my head gets full, so full that the thoughts stop being able to move, they get so jammed up, so squished together that my mind just stops being able to function. Stops being able to process the thoughts at all.

If that isnt whats happening my mind is like a vacuum, so incredibly empty, so empty that an echo cant form. Being awake isnt really worthwhile most of the time, so I just go to bed. Though sometimes Ill sit and just stare at Netflix and let time pass me by.

I saw my GP today, she has started me on some anntibiotics to deal with the boils, she said I have so many that she cant deal with them individually. She also let me know that for the most part my bloods were ok, but with the latest results and previous ones, she has diagnosed me with Type 2 Diabetes and started me on medication for that. I also need to use an antiseptic mouth wash for my stupid tounge.

To be honest I really didnt need the Diabetes diagnosis today. Its another illness that I have to manage, for life. With all the stuff said about my back yesterday, all the other issues being investigated, the issues recently diagnosed, etc Im really not coping. On top of that is the damn hallucinations, the mental crap. I talk to Mum and everything I talk about ends up being about her or she tries to fix things, generally with incorrect or outdated information. I know she means well, but seriously just listen to me, pay attention, hear what I am saying. Stop looking at me and trying to work out how you can relate this back to you or drudge up some random piece of irrelevant information and wrap it up as if its an answer to my issues. Dad just has no concept, he doesnt want to have one. I used to think that he couldnt wrap his head around it, that he tried and for some reason he couldnt. But I have decided that with all the experience he has with, me, Mum and my sister, not to mention himself, he doesnt want to understand, he doesnt want to appreciate or acknowledge what we experience, our limitations, what having a mental illness is like and does to your life. He wants to ignore it all, ignore a significant part of who we are. You could say it might be too hard for him, etc. but if thats the case, he needs to get over it, he needs to deal with it for the good of his family and himself. If he cant, then he needs to keep his thoughts and opinions about our lives and how we live them to himself.

He is actually really irritating me lately, I know he is struggling and he isnt well but he is just about always winging about something, normally Mum or my sister, in front of me at least, I know he goes down to Mum and winges about me to her. He has an issue with just about everything any of do, we are constantly failing to live up to his expectations. It doesnt seem to matter what we do, how much we try, how much we explain, there is always something, some way that we just fail to meet the mark. The way he is speaking about my sister at the moment is really bothering me, she is in a mental health facility at the moment. Im not able to help this time, Im having my own issues and I cant pull myself together enough to deal with her situation like I did last time. Everytime something comes up about my sister, what she needs, simply just going down and visiting or taking Mum down to visit he has a crappy comment, he makes some derogitory comment. I know he is hurt from her last time in hosptial, so am I, but he needs to get over it and help and support his daughter. I know many of the comments being made are meant to encourage me to take over again. The other thing that shits me is he goes on about everything he did while she was in hospital last time, but he was at work most the time. I was the one dealing with her all day, her doctors etc. on my own. Not him. He also saw what that did to me, how much of an impact that had on me, I mean Im still trying to deal with it and get my shit together and he would happily put me back into that position so he could screw around with his damn veggie patch.

What it also says to me, the way he talks about my sister, is how he thinks about my mental health issues. It shows his true feelings about this major aspect of my life. Something that has a huge impact on the way I live and view my life and how I interact with my family and the world around me. What it tells me is that no matter how serious or how significant the mental health issue, he doesnt care. He choses not to understand how it affect our world and our perception. He refuses to work with us, without having an issue with doing so, he is forced or forcing himself to be kind, to be caring, behind our backs he mocks and complains. He helps out of obligation, maybe even fear of what Mum will say/do or what my sister will say/do if its Mum in hospital.

[ClockFace]

I had a rough night last night. I wrote for a while and got onto the topic of Dad and what he does that drives me fairly well up the wall. Not the small stuff, not the every day things, but the big  things, the things that matter. I spent some time with Mum and had a chat and then left with the intention of going to bed, it ended up thatI would sit up until 3:30am. I wrote a bit, I did fall asleep a couple of times, I crapped myself when I woke up each time. I woke up at 6:30am and typed a bit. I dont feel like Im going to go to bed, to go back asleep, but maybe later. There maybe a time where I decide to  but right at the moment, a tired as I am, I cant see it happening. Which stupid given I keep dozing off.

My mind was running a muck last night, hence not going to bed until 3:30am. I kinda want something to eat and then Ill go back to bed and see if I cant get some more sleep. Im really tired, my mind is kinda going, its kinda busy but with nothing. Its like thinking hard but not about anything in particular, which is odd.

I went back to sleep at 7:30am and woke up a few hours later. Im so tired, but I need to stay awake now, I cant sleep more today. I might lay down later but I somehow need to ger going, I need to get my shit together. I need to do some washing today, its only a couple of loads but right now it seems completely impossible.

I just got a phone call from my psychiatrist rooms, my psychiatrist isnt working on the 4th Oct anymore so they have moved my appointment up to the 28th Sept, which is awesome. The less time I have to wait to see her and start doing something the better. Ill send the email that I have written about whats going on with me, my family, etc I dont know if she will actually read it but my psychologist and councillor found it very helpful. I hope she does read it, it would really help and would definately get her on the same page as me.

I dont know whats up with Dad, but he seems to be in a fair shit mood. Its not fair I know, but I really dont feel like dealing with it today, like just go outside or stay in your room, just stay out my hair, I seriously dont need that shit today.

He just came down and told me all about what he has to do tomorrow and how he wont be home all day, he has this,  this and this. He has to pick up my sister and take her here and there. It was like he was trying to get sympathy and/or trying get me to offer to do stuff for him. I kinda feel like Ive done enough of that sorta stuff, not to mention I have so much shit going on for myself. I think I have like 10 business days straight seeing doctors or having scans, most of which may have life altering impacts.

I just said to Mum that yes I got diagnosed with Diabetes yesterday, but its kinda like it can wait. I can put that to the side for now, its not a good illness, if I dont deal with it Id get really sick and possible die, but thats unlikely to happen over the next week or so. So, I can just allow  it to sit for a bit while I deal with whats in front of me right now. At the end of next week Im working with one of the nurses and my GP to set up a chronic disease management plan, so Im sure that under that diabeties will be covered so I can start addressing it then, with them.

Its 2pm, Ive had a 1/2 decent chat with Mum and with Dad seperately, Ive organised a few things, some appointments. Im actually a bit hungry, so Im gonna have something to eat shortly and then I recon Ill lay down for a while. Im incredibly tired, my head feels like it keeps just dropping eveything that is in it and I kinda go numb, mindless and numb.

Dad just said, "Right, lets see if I can actually get something done today", like dealing with stuff for my Mum and my sister, for the family etc. doesnt count as achiving things. Its like anything thats not out in the garden, things he wants to do doesnt count as achiving anything, it doesnt count, it has no value. By extension the people he is helping, those he is doing those things for have no value, or at leave their value is deminished.

Its interesting somewhat that Dad, while he is still helping my sister (and my Mum), but ever since Mum and him seperated its almost like he has seperated from my sister and I too. Its hard to explain, he has this attitude about him that he is not responsible for any of us anymore. As I say, he is helping, he is there for us, but its different, its even more of an effort for us to get him  to  help, to be involved. Its like there is a distance between him and the rest of us, like its him and us or more so him, me and my Mum and sister. He does tend to treat my Mum and my sister together, like one, he always pretty much has. So now Mum and him are seperated, which he views as essentially divorced, he almost shows or expresses the same attitude he has with Mum with my sister as well, less so me. Its weird, its not fair on my sister.

Dad just came in and complained that Mum has asked him to go get some stuff from town. He was in town this morning, she knew he was going into the doctors in the morning, blah, blah, blah. She was asleep, he woke her up after he got back. He asked me if I was going into town and I said no, then proceeded to kinda encourage the idea that I go in, without flattly asking me to, basically making it out to be such an inconvienience for him. Im not going in, Ive had essentially no sleep, my mind, as I said, keeps dumping everything that is in it at random, even when its not doing that, its not really working ideally. It would be pretty unwise for me to actually drive at the moment. Im gonna go lay down shortly, Id like to sleep, Im not sure  I  will but laying down is a good idea.

I laid down for a while, but as expected I didnt sleep. I forgot about my washing, so Im gonna hang that out in a minute and do the other load. But I think Ill take my meds not long after that and go to bed and see if I cant sleep for a good while. Its amazing that I can be as tired as I am, lay down, be all set to sleep, have the time, no requirements of me and still not be able to switch off and just get some sleep. I dont know what it is with my mind going insanely fast around the times where I want to sleep. All I want to do is get a decent amount of sleep, Id settle for 3 or 4 hours without waking, deep restoritive sleep. But I get stuck with this thing of being bombarded by thought after thought, but I say thoughts, I guess thats what they are, there isnt really anything else you would call them, but they arent thoughts as in things of consideration, etc. they arent even complete, they are almost fractions of thoughts because a new thought follows in so quickly behind it. Its exhusting, you cant help yourself but to try and take hold of each thought, hence your mind is just racing.

A lot of my boils have started to go away already, but they were on their way out before I started the antibiotics. One of the larger ones that I almost always end up sitting on when I sit down, I managed to burst last night, it was massively gross but the relief was immediate. Sitting down is much more comfortable now than it has been, however TMI I have what I hope is a boil forming between the crease between my scrotum and leg, it is very much uncomfortable, almost quite painful however, it is not like any other boil Ive had, which might be its location, but generally they are like a volcano, they streatch out and build up into a normally central head. This is more like a ball, probably 1/2 - 2/3s the  size of a table tenis ball, its pretty well deep in the crease, it is really painful to squeeze but its not like squeezing a boil painful, its less centred. So, Im concerned that maybe its not a boil but some growth, Im trying to stay positive about it, its firm so I think Ill try and get into my male GP soon, I have  another issue in that region for him to look at but at the same time I dont want to, I have so many things going on, so many issues, I dont want to risk another one. But it could, hopefully, just be a matter of draining it and that it. But I struggle to get out of my head that it will need to be surgically removed and tested to ensure its not cancer. Having already got cancer, I am probably a little sensitive to the thought of cancer elsewhere in my body. It probably doesnt help that Dad has cancer as well and that almost everytime I see a doctor or specialist about an issue its a new diagnosis.

The bone scan with SPECT on Friday is $255 gap, I have $213 left until I get paid next around the 27th. So, yet again Im going to have to talk to Dad about him funding it. My income is much lower than normal as Im on salary continuance payments, the amount I get hardly even covers me for the month, without all the scans and specialists. When I get paid, I can cover my appointment and scan costs but Im just going to run out of money so much sooner and then I will be asking Dad for medical costs plus the costs associated with being alive. Which would be an issue, he generally will come to the party for medical costs but as he doesnt agree with what I spend my money on he is less likely to cover those costs, particularly smoking. Im waiting to find out how much my next appointment with the Neurosurgeon is going to cost and when I do, Ill have a chat to Dad and see if he can put the money onto the grocery card. The Neurosurgeon you have to pay for your appointment when you book it or they wont book it. The last appointment cost $450 upfront, Im getting results of my scan, so Im hoping its like when you see your GP for test results that the appointment is free, I have my doubts though, serious doubts, hopefully at least the cost of follow up appointments is less than the initial like most specialists.

My GP is good with remembering to write down to bulk bill me for the scans Im having, where its applicable. I have very fortunately reached my safety limit for doctors appointments and medication. My psychiatrist is bulk billed. That said, it is still incredibly expensive all these medical scans, appointments, etc. Its not just that, in most cases you have to pay the full account upfront and then get the reimbursment. Just seeing my GP will range from $130-$190 upfront and I do that at least weekly at the moment. I get all of it back except about $15 because Ive reached my limit but still, its a lot of money to have available to pay upfront. Then you have specialists that cost like $450 upfront, you dont get quite as much back, I think its like $150 out of pocket which is a lot better than the $320 normally out of pocket. One of my scans so far cost $420 and that wasnt covered by medicare, Im trying to get my private health to cover some of that. Then there is all my damn medications, theres heaps of them, most months it adds up to around $500 a month, which is a lot of money and a lot of medication. Again, Ive reached my limit, but the budget of $500 doesnt change and for one reason or another I typically spend that money. Im pretty fortunate here though, my chemist and GP manage the majority of my scripts behind the scenes, meaning I dont normally have to worry about repeat scripts etc. I just go to the chemist and my Webster Packs are put together, they have most of my medications. Then there are medications outside my pack, that havent made it in there yet. Again they are managed by the chemist and my GP. The only scripts I have to worry about are for my pain medications and I drop them with my chemist, they hold them and when I need any of my non-Webster Pack medications, I just go in and ask for them, no mucking about, I ask, wait 10min, pay and leave. Its really simple, really straight forward.

I just realised that I havent got a rebate for the full spine MRI, which isnt covered by Medicare and nothing was said about it when I spoke to my health insurer, so Ill have to call them again tomorrow, which sucks given the hold time is like a freaking hour. I dont know if they cover it but it would be really helpful if they did.

I dont typically eat much, generally its a donut and a small amount of a Coles meal a day. I mainly drink at the moment, but I think even that Im not doing as much. Im finding it harder and harder to even eat that, but its not because I feel sick or the pain, Im just bored with eating. Like the action of it, the time consumed (like I have a hugely busy life), I dunno it seems like why bother. Normally its not like I feel hungry even, if I didnt have to, if it wasnt really important, if it wasnt needed for my medications, I simply wouldnt bother at the moment. Im sure its a phase and it will pass but it seems so unimportant.

My GP got me to start using an antiseptic mouth wash for my tounge issue. So I bought some yesterday and had a go at it today. I dont know if its because of my tounge, because its all swollen and fresh muscle is exposed but I nearly went through the roof using it. I was able to swish it around for like 30 seconds, not the 1 minute it says to before I had to spit it out and I immediately had a smoke to try and calm my mouth down, I didnt have a drink handy and I wasnt thinking straight, my mouth was going mental. On the positive though, my tounge hurts the least it has in weeks. Its still a bit funky but its so much better.

I know its not ideal but I am really desperate for some sleep, so I have taken extra of the medication that has a sedative part, Ive taken pretty much all my medications that I can, PRN etc. that have any activity in helping make you sleep. So, hopefully tonight I will get some actual sleep. I dont really have anything on tomorrow except a couple of phone calls so if I sleep in there is no real hassle and Im going to bed well early so I should be ok tomorrow morning, thats all on the provision I do actually sleep. I have a muscle relaxant, just the one left, which should make me pretty drowsy but Im hesitant to use that at night with all my other medications, Im pretty sure I wasnt on most of the medications I am now when I was taking the muscle relaxant. I know it might seem like I am being a little reckless with my medication, but Im not exceeding the dose that I have been on in the past and its not a regular thing. I try to stick to the dose that Im now on, but as a last resort Ill do this just to get a nights sleep.

Im incredibly frustrated my back is ok, its sore but ok. My shoulders hurt but they are manageable. My legs have been ok today, a bit sore and achy but better than most days, I have boils under my thighs and between them and they are uncomfortable. I have this lump thing in the crease and that is really unpleasant. My stomach isnt too bad today, though I havent eaten much, I really havent pushed that at all, nor have I drunk much. I have a growth thing under both arms, I think they are smaller boils developing but they are taking a really long time, so I am wondering if they are more than that. My arms are really heavy and ache, as do my hands. I dont have much of a headache which is a welcome change. This is a pretty good day and thats what Im frustrated by, Im pleased with how I feel today. Im pleased that its primarily aches and pains today, eventhough it affects pretty much every part of my body. Like, today the only part of my body I would say is effectivly not affected is my head, but my mind is having its own issues, so maybe I cant really say that.

It frustrates me that I am pleased, that I am happy and I am content with the amount of pain and discomfort that I have suffered today. It frustrates me that this is as good as I can foresee my pain experience being, I expect that it has days where it might be better because I dont have boils or lumps. But in general, this is it, this is what I can expect as a good day, this is what I can look forward to as "relief" and that is frustrating and seriously sucks. To clarify, Im not 80 and have lived a life on the land, where I worked on a cattle ranch, slept under the stars, ate what I caught etc. I didnt have an exactly easy life, I was working during school holidays harvesting potatoes, I worked a number of manual labour jobs growing up but for the last 15 - 20 years its been desk jobs. Growing up the family wasnt well off but we made do, the house was good enough. As we got older my parents seemed to become better off financially, probably because Mum went into better paying employment as did my sister and I, as we left school. Its not the point, Im 43, Ive had some physically intensive jobs but overall physically I wasnt put into a position where my body was repeatedly mistreated significantly.

So I was going to have a really early night, like 7ish. Its now 20 past 8, Im about to have something to eat. I wasnt going to eat but the medications kinda kicked in and then I got the munchies. I was writing and ignored them and they turned into wanting a meal. Amazingly I ate the whole meal, wwhich is really rare, Im kinda assuming its the medication, it is also used to treat eating disorders. I can definately feel the medication has kicked in, well and truely. So often when Im like this I seem to push through and stay up but Im finishing my drink and having a smoke and going to bed.

[tyme]

Oh!!!! Is that how you do it @ClockFace . So you type a little throughout the day/night and then post? I guess it helps get it off your chest. 

I'm sorry how hard it is. It sounds so difficult that you have to fork out for all these medical tests etc. I'm thinking how hard it is for those who are in a similar boat to you. If you have reached the threshold for your medicare safety net, do you still have to pay out of pocket?

I'm sorry to hear you now have to contend with diabetes on top of everything.... it's like a never ending roller coaster.

[ClockFace]

Yeah, I use Evernote through the day and night to write bits and pieces. Before I go to bed I copy and paste into the SANE site and upload in one big hit. It helps me process things at the time or soon after they happen, Im finding it more and more difficult to think things through internally, been like it since the begining of the year but  its just getting harder. This helps with that. 

Hitting my safety nets means that the costs are reduced not eliminated. They are reduced a fair bit, it helps a heap though. 

Yeah, I feel like I have a steady stream of crap flying my way, that doesnt want to let up. Im sure Ill run out of body parts to have issues with soon enough