Malens Babble

Ive been up for a little while, Im into the fasting stage of my morning. I have a scan this morning where I have to fast for an hour then drink a couple cups in the next hour. Id had hoped to sleep through that, Im not a fan of the whole fasting thing, especially from liquid, food isnt an issue. Its a CT scan so Im gonna be on one of those God aweful beds. I know its not gonna be comfortable, my back is not gonna enjoy it. But its the getting on and off again that concern me, on will be difficult but not too hard, off on the other hand is hard enough before all the procedures, now I dunno, it could be a real challenge. I get quite self concious about these things, Im a big guy as I say and really dont like resembling a whale stuck on a sandbar.

I woke up earlier than I had planned, I had planned to wake at 7am for the CT Scan but woke around 5:30am and didnt see the point in going back to bed. I got several hours of sleep, which was completely welcome, but also completely insufficent. I really needed so much more though there was not sufficent time for me to get much more anyhow. I am still well tired, still so exhusted. The infuriating thing is I know I have to wait until late tonight before I will have another opportunity to get some sleep. I will more than likely try to have a nap, lay down for a while and more than likely fail. I will more than likely wind up spasming so much that I will get so frustrated that I will give up and get out of bed. I would really like to lay down and have a nap and try and "catch up" on some sleep. I feel like I could sleep for days.

My sister recently had surgery which causes her an extreme amount of pain in the loo. When it happens you can easily tell, like the pain she is in is written all over her face. You can't help but feel for her. Today she said something about thinking she has a high pain tolerance. It's something that is kinda thrown around by her and Mum every now and then. If it's in relation to me I have a very low tolerance. While it stands to reason that everyone experiences pain differently there is no scientific way to measure a so called pain tolerance. The is no objective standards by which to set a benchmark of what a normal tolerance level looks like and therefore what would be classed as high or low pain tolerance. Interestingly I've never heard a reference to normal pain tolerance its either high or low, what happened to average. There is no objective measurement therefore no average therefore the concept of high and low pain tolerance is fictional.

Pain is subjective, in that each individual experiences it differently, not only that but there are so many factors surrounding the pain experience that ultimately have a significant impact on the experience such as the supports they have, I mean just the people themselves as well as the professions, if those around them are positive in their ways then this will likely transfer to the person experiencing the pain. The profession is also important, having the correct specialist(s) is one thing, having a specialist who really knows their stuff is another. Having those rare specialists that really know their specialty and also knows how to relate to their patient can make a huge difference. Having the right support can make a huge difference to the pain experience.

Pain is therefore also affected by the sufferers emotions and moods, if a person in pain is severely depressed this can and likely will affect how and to the extent that the pain is felt. This is pretty well known. It is a bit of a vicious cycle, we are in pain therefore we get depressed, therefore we get in more pain and it repeats. The difficulty here is where you put a stop to the cycle. Generally speaking the target is going to be to minimise depression, as this is likely the easiest to treat. If pain were simple and straight forward to treat then the likelyhood is that it would not get to the point that depression would become a factor.

I think if given the option, most people will consider themselves to have a high pain tolerance, it would generally be expected that people will think this of themselves, not because they are arrogant but most people simply assume they deal with pain well, particularly when in chronic pain. It is simly because they have never experienced pain like this and they have no external or internal examples to reference. For example, my pain, there is no way I can truely describe it to another person who has never experienced them. There is no way that I can explain to another person the pain I feel constantly, the pain I feel when I spasm, the feeling of the spasm, the brief lack of control, the complete randomness of the spasms, the varying intesity of the spasms and the pain. How do I explain the feeling of being trapt within your body, while seeming to continue to function normally. To monitor your every movement for instance walking, how your leg moves, how that puts pressure on your hip, on you knee, trying to get you leg to lift fully off the ground, how your foot lands on the ground and rolls as you take your step. Its all so important, get it wrong and you face causing yourself pain, get it really wrong and it can be a great deal of pain for quite a long time. Then there is body roll or trying to lift something, everything needs so much attention. I mean even sitting takes concentration, you have to keep mind how you are positioned, where your legs are, how your arms and shoulders are positioned. How do explain being trapt by limitations that seem so simple and mundane, just do this, just do that. I mean pulling up your quilt, you wouldnt think that is going to be a problem but you have to be laying right, have your arms right and for me use your feet. Explaining that some things you can do, they hurt, they can cause pain for sometime but you're willing to invest in the pain for the outcome. For example shopping, you need to do it, you need to eat, so you will invest in that, you will allow yourself to be in pain for the outcome. But just because you're willing to invest in one thing or another does not mean that you will be willing to invest in other things, particuarly something they want you to do for them. The investment doesnt meet the reward, thats not selfish, its self preservation. You can not continually invest in things, you cant continually cause yourself pain, inflame your condition, you cant do that for yourself, nor for others. Sometimes you may want to invest in something but the investment is too great, it may not seem like a big deal or that dissimilar to other things you already do but for one reason or another it just triggers your pain, people will never understand that. People will never understand how these things affect you mentally, how depression becomes apart of your everyday life, even if you have suffered from depression prior to finding yourself in significant pain the depression you now suffer from is different, I cant explain it but there is a different intensity, almost for lack of a better word, a diffenent density, it sits heavier.

It is impossible for me or anyone else to relay the true experience of pain that someone is suffering from. It is therefore impossible to look at one person and determine that they have a low or high tolerance, you simply dont know, you cant relate your pain experiences to someone elses. You can be empathetic but it stops there. Things like small cuts, stubbed toes, etc we can relate to, we have experienced that, but for the most part if you suffer from a significant chronic pain situation then you're unlikely to meet another person with a comprable condition therefore you are unlikely to meet anyone that has any chance of being able to relate to your pain. But even then, it is unlikely that you would be able to determine any kind of pain tolerance, specifically when there are so many factors that may be involved.

I have been told that I have a low pain tolerance, Im pathetic and its really not that bad by my family. Now I do not wish what I am going through on anyone but I do with there was a way in which they could experience what I am first hand, not just the pain but all that comes with it, how Im treated, the lack of understanding, the isolation, etc. Not as punishment but so they could have an understanding, so they could appreciate my experience, the world that I am trapped in. I dont know if I'm handling the pain etc I have well or not. I think that given my circumstances, overall, I deal with it quite well. I mean, Im depressed but for the most part Im not overwhelmed by it, most the time. Im not spending my days in tears. I dont do much but I take care of my own needs. I maintain a reasonable disposition for the most part, Im not outwardly angry, hostile, argumentative etc. I dont think I complain much, I may state the fact that I cant assist, but I am not moaning and groaning about my pain. I am sure my family would speak to the contry, but I am aware of my actions and what I am saying. I have got to a point where the opinions of my family have very little influence on me. I really dont care what they say and do in relation to, well pretty much anything but in particular my medical situation. They have very little information regarding my medical conditions, except from the limited information I provide them. I dont neccessarily withold information, its moreso that I provide information that is relevant, thats all, information that will be useful to them. They arent experiencing what I am exeriencing and they have absolutly no frame of reference to compare it to that would make it relevant or understandable to them. They have a clear history of minimising and dismissing my conditions, my feelings. My thoughts and opinions are never respected. Evidence and information from doctors and specialists is wrong unless Mum and my sister agree with it, seriously they can be in the same room and will disagree with what the doctor has stated during the appointment, even if its his/her specialty, even if he/she has written the litteral handbook on the subject. It is my view that my family in general are too biased against me to make sound judgement or decisions regarding my health and wellbeing. That their biased views of me, my health conditions etc prohibit them from being benefitial and impartial partners in managing and maintaing my conditions. As such it is improper for me to take advise or consider their opinion when making my decisions and how I act in relation to my medical conditions.

Ive had a med to help me get some sleep, its 3:30pm, Im hoping that it will help get over the whole spasm thing and allow me to go to sleep. Im going to go to bed shortly and see how I go, hopefully Ill get a few hours sleep and Ill repeat that tonight, so Ill get a good amount of sleep today. My back was Okish this morning pain wise but has gotten increasingly painful. My leg has been frustratingly difficult to work with today, it hasnt wanted to do as I instruct much at all, so walking has been interesting. Im not feeling right in the head for the most part, its like my heads a fishbowl and everything is just sloshing about as a walk abound etc. but it is kinda more constant than that. Maybe a better analogy is my head is like a jack in the box. The ache in my legs is a lot better, its sill there but not nearly as bad as it has been. The pain between my shoulders is up there and I think this is the driving force behind my headache. I've been hallucinating today, I have been hearing music, a short bit of music that is continually repeated. But I couldnt really hear the music, it was like it was being played really low and behind closed doors. It didnt interfer with my ability to function at all but was really annoyinng, really really annoying. I have this a bit, audible hallucinations, they come and go and really for the most part they are more annoying than anything. Like, hearing music is pretty much not a worry, it doesnt bother me. When its voices from hell, the screaming, etc it bothers me a lot more, its incredibly hard to cope with. Ive had to work while dealing with the screaming, having a customer on the phone, writing a report etc is very hard under those conditions.

I went to bed this afternoon around 4 and with the med I took I actually did fall asleep but only for about 2 hours which was awesome but I had hoped that I would get much more than that. I woke up with a incredible start, I sat bolt upright but I have no idea why, like I cant think that I had a nightmare or anything. The action of sitting bolt upright, the sudden movement, really didnt do wonders for my back. I also woke up feeling quite unwell, I felt very nauseated, I didnt just feel like throwing up, it was coming up into my mouth. This didnt stop me drinking what Id like and when it comes to having tea Ill eat what I feel like, if I feel like it. I do kinda think I will eat and see how I go, if I throw up then I throw her up. Ive had a similar feeling with the pain, however it seems that it was different. I couldnt eat back then, the nausea was too severe but it sat differently, I felt full, not eaten full but like a balloon had been blown up inside my stomach, now, I dont have that, I feel nauseate and hungry. Im still really tired, Im dozing of when Im typing etc. I didnt sleep long enough for the meds to wear off, I am almost of the opinion that I should go back to bed.

The difference in my sisters current pain and mine is that hers is, from what I can understand, acute where as mine are chronic. She has a period of time generally once a day, as I have seen it, where the pain affects her and its pretty extreme. I look at her when it happens and I cant help but feel for her, its very clear that she is in a hell of a lot of pain. The intensity of the pain lasts for a while, probably 30min to an hour going by her face, it could be longer. But that would be the worst of it over in that time. I dont know if there is some level of pain that she has all day but if so they dont appear to interfer with her day. Again I could be wrong. You all know about my pain.

My sister has talked about her pain a few times a couple times just today. Generally, she does speak about it a fair bit, most days you hear a bit about the pain particularly after she has gone to the loo and is in pain. Today she was on about how she wouldnt wish it on her worst enemy. I appreciate that, its the whole, I bear such a great burden, I wouldnt even pass it onto someone I hate. I dunno, its this almost martyr complex but not to the level of death. She makes sure people knows shes in extreme pain. She even went so far as to say that she was in tears the other night, feeling sorry for herself etc. I dont really get that, the whole crying thing, I dont do it. If I did it would be behind closed doors and I wouldnt be telling my family, not in a hurry anyhow. But my sister seems to proclaim it, almost like she is proud of it. I do get the feeling sorry for herself a bit, I have moment where I regret that I started this journey etc. I dont know that I feel sorry for myself to the extent that my sister does. I dont cry from it, I dont get overly depressed from it, its not something that sticks with me long. Im not picking on her, again we all deal with pain differently, I cant say I understand her pain, I can appreciate it but I have not experienced it, in any capacity so I cant say the correct way to handle it. Though if I talked about it as much as mysister does I would be told to stop pretty quickly. I mean I do get a bit of eye roll and sighs when I groan etc especially when I have a spasm. I was saying that I would cry behind closed doors, it even goes as far as hiding my emotions, I dont really express how I feel, my emotional responses and that sort of thing in front of people, especially my family. I have learnt that its nor the thing to do, if/when you are continually told that you're pain is not real, that you're pathetic, you're not in as much pain as you think you are, you do find yourself hiding your pain. If you express your pain and your continually met with critisim, effectively told off for doing so, you stop expressing your pain. The same goes for feelings, when you are told regularly that the way your are feeling is wrong you stop sharing your feelings, unless they are right, which is when they marry up with your Mums. It became more complex when Mum and my sister became almost one and more so when my sister tries to take on your Mums role, so you're trying to work out who's feelings you are agreeing with and can therefore express. My sister just got off the loo and its been no end of whining about the pain, like I am aware it is painful but she is making sure I know that she is in pain. I might be reading into it but its almost like she is trying to make sure I know her pain is worse than mine. If I carried on like she is Mum would be told, if I kept doing it then there would be words.

Some days/hours I feel like the pain has gone. Sometimes I wake up and the pain is so minimal for so long that you think the procedure has started to work. Today is one of those days, I have significant periods where there is minimal pain, what I would almost consider as no pain. But then something happens or I just feel the pain again and my hopes are gone. If/when the pain does go Id consider not saying anything for a few days to my family, primarily to ensure its actually true. It would prevent a false positive, but it would also prevent them from trying to start me doing things, chores, etc to quickly. I think that when the pain does go, I cant just jump straight back into normal life, I need to ease into it. I would like some time to enjoy being pain free for a while too, I mean its been 22 years, a few days of not feeling pain constantly to do as I please isnt much to ask.

Its something I have been asking myself, what does pain free look like for me? I mean, over 2 decades of being in pain, pain that affects essentially every part of my body. Ive been in pain for over half my life, its hard to know anything else but being in pain. So, the idea of not being in pain is foreign to me, I cant really imagine it. I cant imagine being free from the confines of pain, how my back will actually feel, like is there feeling at all, I get that I will know its there but is that it? Am I in some minor ongoing pain, like is there an ache that everyone lives with? I dont know, its kinda new territory for me.

Ive taken my night meds and am going to go to bed shortly, Im hoping to get several hours of uninterrupted sleep. I would be really happy sleeping through to my alarm tomorrow at 10am but I would think that too much to hope for. I did have some tea and I dont feel so vomity ho still quite compelling.

I went to bed, it took a little bit to fall asleep, the spasms kept me awake but eventually I fell asleep. Frustratingly it only lasted a couple of hours again. After less then 2 hours I woke up coughing up stomach acid. I didnt feel well before I went to bed but this was a bit suprising. Im still getting stomach acids coming up. Ill go back to bed in a little while, Im really tired. Im having trouble focusing

She has gone to sleep at the table, I woke her up and told her to go bed, and got yeah, I argued with her a bit saying at the end that she wasnt going to bed, as she said she was. The "conversation" had become a bit heated by that point, but she wasnt budging. Next minute heads down and she is asleep at the table. I really dont understand her obection to sleeping in her bed.

I went back to bed, again 2 hours of sleep and Im awake, tho I keep dozing of and making mistakes when typing. I doze off brifly and repeatedly type the same digit, its very annoying. Im going to go back to bed in a minute.

I went back to bed and got another couple hours sleep. Im incredibly tired still, again not a good nights sleep. Im not sleeping much and its really broken. I believe the sleep I am having is quite disturbed and that I am having nightmares. I think the nightmares have been going on for a week or two.

I didnt bother going back to bed and went into town instead eventually, my sister asked for somkes and drinks and then says "I wont ask you to go get me a Coke cause you dont want to." I just said that I wasnt going int today. Ive explained previously why I dont want to go into town, its not a matter of not wanting to, not like I am lazy, I have a reason. Her saying what she did was really her way of asking without asking, while having the manipuliative sting. I got home and was asked if I changed my mind. I said no. Then she asked abou the dontut I got, she says can I have some, I said no, I got a sad face etc. She doesnt have to share in what I have gotten etc, I bought it to eat not to share.

She now seems in a grump, she was in a reasonable mood before all that, no not so, but my care faactor is quite low. She doesnt always have to or get to have her way. I couldnt work out why I feel so hot, its quite cool outside then I looked at the split system and its 27.5. Yeah she has the shits up about something, I just asked if she was ok and whats wrong and I dont a very bland and cold answer.

Im struggling to stay awake, I still have to go to psychiatrist today, which is why Im awake, if I didnt have that Id be back in bed. My back is sore, more than sore. Though for the most part I am walking more or less properly. TMI I went #2 for the first time in several days, that may be why my stomach feels so bloated.

Mum has been trying to get onto the NDIS and given circumstances I was put down as her number 2. I assumed this was like Id be called it something happened and they needed her emergency contact, that would be me. I now find out that means Im supposed to be in meeting etc. Not wanting to be callous but Im still looking after my sister, now I have my Mum. Dad cant do Mum I realise that but surely he could help more with my sister.

I was in the appointment with Mum and they were talking about who has what and all Mum said about me was Mental Health Conditions, no mention of the physical stuff. Kinda reiterates that she doesn't believe them. When it came to my sister it was oh God what do you say about your sister. It was like she is the sickest out of all of us, she is the noisiest about what she has but I don't know if she's the worst off.

Talking yesterday about pain tolerance my sister was talking about cramp and I was saying the whole standing in front of the heater, the winge etc its a bit much. Mum was in agreement with my sister, she's even rung my Dad to rub her leg. I get cramp quite a bit lately, I get up and walk it off and carry on with life. If I carried on like them they would make a fuss that I shouldn't be so pathetic. But its a cramp, your leg didn't cut off. Talk about pain tolerance comparing things there is an example I can handle that pain no problem, they can't who has a higher tolerance

I think when I get home from the psychiatrist I'm going to bed. I keep nodding off waiting for my appointment. I had my appointment, its the last time Im likely to see her. I think that may not be the worst thing, I dont overly gel, with her. She a bit odd, shes a bit hard to hear/understand, she has a bit of an accent, not bad but she mumbles. She is going to recommend that I start a new medication aimed at controlling the psychotic issues. She doesnt think that all my symptoms are going to be able to be treated by medication, therapy will have to play a part, which I suppose I kinda assumed. I mean thats what psychologists are there for. She also said an important part in me dealing with my mental health is leaving home, seperating from my family. Not that I shouldnt see them anymore at all, but I shouldnt be as intertwined with them as I am. I had sent the psychiatrist an email with a whole heap of information around how my family treats me and she said I clearly had a lot of angst, but didnt say if I am justified in my feelings. I think there is a big part of me that is looking for that, looking to feel justified for how I feel.

I went back to bed not long after I got home from the psychiatrist and again I got about 2 hours sleep. I dont understand what the go is with getting 2 hours sleep at a time? FFS for one reason or another I wake up after around 2 hours, I cant just get a decent amount of sleep. Im finding it really frustrating because I cant just go back to sleep.

My sister had gone out while I was in bed but came back while I was inside and seemss to be in a worse mood now than she was before I went to bed. Seriously, her moods are one to another, but deep moods quickly. The thing is she make sure people know, just the way she carries herself, I mean she hasnt said anything to me and I can tell that she is not in a good mood, just from the way she is sitting, her face, she just seems to ooze her mood, her attitude. I dont know if I do the same, I dont know if it is as easy to determine my mood just from looking at me. I dont think I influence those around me by my attitude.

My pain is increasing as the day goes on, walking properly comes and goes but is mainly happening, but sometimes I slip back into walking while my foot drags behind me. The pain is managble but pretty frustrating, its not so much the level of pain, more so that I am still in pain. There are periods of time without pain making me think its going altogether, but its just taking its damn time stopping altogether. I kinda feel like I am on the threshold of the pain going, but I feel like I have been hanging out there for a while very slowly moving forward, overall, its a bit two steps forward, one step back.

I keep going back to bed and getting around 2 hours sleep, its really odd how it keeps working out to that amount of time, the reason I wake up is different every time. How it be 2 hours every single time bewilders me. Ive just woken up again at a bit after 9pm, Ill have my night meds in a while and go back to bed and hope that I get more than a couple of hours. I can only hope at some point I will break this cycle. While I was in bed Dad decided to put my dry clothes on my bed, well on me and I knocked them off. He just said that he had put the clothes on the bed and I said with me in it, he replied with were you. Im a small whale being kind, I have no idea how he would not be able to see that I was in the bed, added to which I had music going.

My sister and I were sitting at the table together and the dogs were outside barking. My sister eventually decides to do something about it, by asking me to go and bring them in. There is absolutly no reason she couldnt, couldnt be bothered with the argument, but its that kinda stuff that really ticks me off, she is capable and should as 2 are her dogs, she gives it to someone else to do because she is too lazy to get up and deal with it herself.

Im going to have my night meds shortly, Im tired and hoping to go back to bed soon and get some actual sleep. I did talk to the psychiatrist about my sleep and she said that it can be really hard to treat, but didnt bother to do anything towards treating it. When I have spoken to my doctor they too have avoided doing anything towards treating it either. I really dont know at what point anyone medical will do something about my sleep. When I get really tired as I am now, I start to find it hard to stay with it, like my mind just wanders off completely, its not thinking about anything, its just gone. Nothings happening and I am hardly aware of anything. Its not the best feeling. At the moment Im waiting for my meds to kick in and then going to bed, Im hoping that that will be enough to put an end of the night for me. My back pain isnt great, right between my shoulders b!ades are really painful. Even breathing is causing me pain. You know when you put the pain, lack of sleep and psychotic symptoms together it makes for very challenging daily life, adding things like the anxiety, bladder cancer and everything else makes life exceptionally challenging overall. I dont think my family realise just how challenging my life is, Im not, for a lack of a better word, bragging, my life is incredibly hard, there is a lot to deal with daily and regularly and much of it wont change, I just need to learn how to manage it better, manage how I deal with my conditions, how I interact with them but mostly my responce to them, particularly negative aspects. As Ive said, pain is going to be apart of my life from here on, there will be period that are painless and periods that have incredibly pain so I need to learn how to repond to that pain, especially the initial pain as well as I can as early on as I can.

I actually hammered some sleep, I think I got over 7 hours without interuption which is pretty amazing. I havent slept that long in a while and its really unusual for me to do so. Im not upset by it, I feel much better than I have in a long while. Though part of me is tempted to go back to bed and get some more sleep. Im in a fair bit of pain, in between my shoulder b!ades, its really painful. My lumbar is painful as well but not as bad as the higher up. I going to go into the servo shortly and get my stuff. When I get home I think I will try and go back to bed.

Ive gotten home, Im having a drink and then going to bed for a while, Im hoping Ill fall asleep and not get caught up with spasms. Im pretty painful all over now, left hip, lumbar and shoulder b!ades are the worst but everwhere else hurts as well. I felt pretty good when I woke up but now Im like a muffin thats been made into a pancake, I have little energy and while my back is a stand out pain wise, the rest of my body hurts as well. I have nothing on today, no appointments etc. so Im going to try sleep as much as possible. I am going from hot to cold, Ive had the heater on a little while not long enough to heat up the room. Im rapidly not feeling well, Ive got my hoodie off now and still reasonably warm. I woke up feeling pretty good but now I feel really average.

Ive started smoking inside while Dad is asleep and last night I smoked inside as it was to damn cold to smoke outside. Im kinda at the point of screw him, Ill smoke outside when its ok to do so, when its not too cold, raining under the verandah etc. Its really unfair to make me smoke outside in general but more so when the weather is really bad, really cold all the while Mum and my sister are smoking inside. If they were outside during it too, it would be different, but they arent so why should I. Its 12 degrees in the middle of the day today, so its really freaking cold and its going to colder so I will scurry inside regardless of rules.

I got a couple hours sleep but woke up with really bad reflux. Ive been having a little issue with this lately, Im wondering if its medication based, Ill have to talk to my GP when I see her next week. The pain between my shoulder b!ades is getting worse, its really bad. My lumbar isnt good either, it seems that its going to be a bad day for my back. I mean a worse day than normal, which I am not happy about at all. Walking is fine for the most part today which is good, every now and then my foot drags without warning and it causes me to nearly trip up.

Im having a lot of stomach issues which I am putting down to the pain medication. I need to start some more medication that I have to see if it will help. I dont feel well overall, the reflux is getting worse, I ache a lot, it may seem weird but I can tell the difference between aching and the pain, it feels different, its two different things that are felt seperately. Im going from hot to cold. Cold to hot. I swear feeling sick makes the pain worse, it certainly makes it harder to deal with. I decided to go have a shower to see if that helped and it didnt really, I just sat and let the hot water run over me for like 10 or 15 minutes. I think Im going to go to bed in a minute and have a rest.

I rang about my Psychiatry appointment and they are sending off to Psychiatrist for approval then can go from there. The Psychology appointment seems a bit more difficult, I need a female and that seems to have thrown them in a bit of a tizz. Now they are going to talk to the Psychologist and run my case by them first. I was inside when I finished off the call and my sister just asks like she has a right to know who that was. I got a call back and managed to get an appointment tomorrow morning. I had written an email aimed for my Psychiatrist and Psychologist, now that I know who my psychologist is going to be I have sent it in. I doubt she will get time before tomorrow to read it, if she does at all. I think it will help to get on top of things a bit quicker, things for me are very complex, there is so much that is intertwined. Just about any question she might ask has a complex back story or relates to something else going on. It just makes it so hard and would take so long for everything about my life, like the important things that I deal with medically and at home to be explained, that would be before we could start addressing anything. So I am hoping that they read it so we can get a head start on things.

Its freezing outside, there is a strong wind that is like ice, yet I am still required to smoke outside, while everyone else is allowed to smoke inside in the warmth and comfort. Im going from warm to cold regularly, which I cant think is good for my back, for my mucsles and I dont think its good for your health in general, in that you get colds easier. I dont think its just that I am cast outside, its more than unfair its unjust. Ill have to come inside to smoke soon, I wont be able to light a smoke with the wind outside. Added to that its getting too damn cold and its not right that I have to sit outside in this weather while no one else has to. If everyone was expected to smoke outside it would be a different story but Im getting singled out with no other reason than Im me. From what I can interpret it is because Im an easy target, my sister has Mum behind her and wouldnt allow my Dad to make her smoke outside too, because it would be too uncomfortable for my sister, but me no one cares.

Im feeling a lot better than I did this morning, Im still in pain but my stomach isnt nearly as sore and uncomfortable. It was incredibly hard, that has passed and it feels like normal now. Im still a bit achy. The hot to cold seems to have stopped. I did lay down for about 30min but I got the call about the psychology appointment. Though I wasnt laying down to sleep, just to lay down. It did actually give me a bit of a pick me up. My lumbar and thorasic areas are in a lot of pain today, so are my shoulders and wrists. I have Ulnar nerve entrapment on my left elbow which sometimes causes me pain in my wrist as well. One day I will get the Ulnar nerve entrapment treated however the surgery has a 6 week recovery period and you cant use your arm pretty much at all during that period, which would mean that I would rely on my sister and/or Dad to do a lot for me, as such I am really reluctant to do the surgery at all. I dont think that now would be the time to put that on them, we have had so much go on over the past, forever, that it would be unfair on them to put looking after me on top of everything. That said, I dont feel like its something that I can request of them, I think given my previous experiences, having to look after my needs for 6 weeks would be too much for them, even if it were shared. Dad would disappear every 5 minutes and my sister would crack a wobbly being left dealing with me. I had considered adding this surgery to my time off at the moment, get it resolved while I am already unable to work. I dont think it would be wise for me to do that given my mental state and the pain I am already in. At some point I need to get it done but when and how I cant work out. Id have to have 6 weeks of leave accrued, my SCI doesnt kick in for 6 weeks so there is no point there. So yeah Id need leave accrued, which is very unlikely. When I leave home I have no one to help me, therefore Id need some way to deal with that. That is a concern when it comes to my procedures, I need 24hrs of care, Im hoping they can keep me in hospital for the day. I dont have anyone I think it would be right to put that on and there will be a lot of issues at home for sometime surrounding me leaving home so I dont think that would be a wise option, also even just 24hrs stuck at home unable to escape once I have been able to leave isnt appealing.

Im starting to feel a little worn out again, I think Im going to lay down again for a bit. Its a little frustrating having to lay down as often as I do at times. Im not doing a hell of a lot otherwise I realise that, I do enjoy writing though. Its just I dunno, it does make me feel a bit lazy, at least with writing Im sitting up and can participate in the family discussions etc. and it makes me feel kinda weak, as in just not up to standard. The pain does cause me to get tired easily, it really wears you out, there is a strain on your body and mind that is unique. Chronic pain grinds at you, it wears you down, it beats at you like nothing else I have experienced. It causes you to tire so easily, even without any real energy expense you wear out quite quickly. Ive noticed this between days of more intense pain and days where it isnt so bad. Days where it isnt so bad I tend to rest less, as the intensity increases the more I rest. Add that with that I am feeling pretty lousy, that doesnt help. You tend to feel tired when you are unwell.

Before I forget Mum asked if I got a good sleep today, which is amazing. I cant remember the last time she has asked that. There was a carry on about the dogs being feed. Dad is doing it at the moment. My sister said to me, as I was walking away to lay down, to remind Dad. I said he knows what he is doing. Honestly I didnt care besides that my sister was very capable of reminding Dad. I wandered off to lay down. I didnt sleep, just laid and spasmed a bit but not to bad. I came down and something more was said about it I just said OK and went and had a smoke. I really and honestly dont care, Ive made it clear feeding the dogs is no longer up to me, I dont want to be involved, Im involved enough with them, my sister has asked me to bring them in and give them water today, all while sitting there across from me. She is gonna start getting some answers she wont like soon. I dont have a problem with the dogs, I like them, I pat them, a couple of them are really cool and I get on well with. I just dont feel the need to be the one that looks after them, especially when their owners dont.

My sister said to me today words to the effect that I should never have the surgery she has had. Referring to the pain she has when she goes #2 as she had been not long before. I really dont know where she gets off. I really dont know who she thinks she is talking to. I understand that she is pain, specifically when she goes to the loo, Im not disputing that at all. From what I see her pain is for a period of time after going to the loo. Im sure there is ongoing pain as well. But seriously, that does come across as her trying to put me in my place in the pain competition, she completely disregarded my current experience and said that hers was worse and it should be avoided. Now Im in no hurry to have her surgery, I see the pain she is in, im really not oblivious to the amount of pain she is in, it is exceptionally clear. I will never deny her pain. I wish however, she would stop trying to minimise and disregard my pain, I may not cry or moan like her, I might not scream, yell, etc. but the pain Im in is very real. I rarely express my pain in anything more than a groan when sitting down, sometimes moving or if I have a spasm. I dont talk about it much at home at all, I will go really long periods without mentioning to anyone in my family, there is no point, no one wants to hear it even less so acknowledge or appreciate the pain and how it is affecting me. I am fortunate that I am able to be treated with really strong pain medication, which manages my pain around the clock. My pain fluctuates still, at times its worse than at other times. Through out this whole journey I have experienced tremendous almost unbelivable pain. While I was on the lower dose of the pain medication the pain I was in daily was much higher than on the higher dose, Im still in pain but the average significance of the pain is less.

I dont know if I have got off topic, got confused or what but Im hoping my point is being made that I feel like the statement by my sister was, maybe, arrogrant, superior, dismissive, it was this feeling that she was inferring that my pain didnt matter, wasnt relevant, and just wasnt as bad or important as hers. And again, she was making her pain known, something I am not permitted to do, if I do it goes to Mum and is judged and always determined that I am pathetic, etc. If I were not on the pain medication that I am I can not imagine the pain I would be experiencing. The pain for me has come in steps, building up with the procedures I have had. I have had pain medication available quite rapidly at each step. I had a strong pain medication available from the start, which I used as needed. When the procedure was done I was able to rely on this to get me through to when I could see a GP, after use of this pain medication for a while there was an issue from PBS and we changed to a much stronger pain medication, that helped quite a bit, it provided around the clock pain relief, but I also had the original pain medication as breakthrough pain. After the last procedure I was relying on the breakthrough pain medication until I saw my GP when he increased the dose up a step. Ive had periods of exceptional pain, even having the breakthrough pain medication, I wasnt actually able to manage the pain. It wasnt until the pain medication was increased to its current strength that I have really been able to manage my pain. As I say I still have pain, but its tolerable for the most part. I feel, while I have been in a crap tonne of pain, I have been pretty lucky how quickly I have been able to get pain management support.

Even with the pain managed as well as it is, allowing it to be tolerable, it does not allow me to do much. It doesnt take much for the pain to flare up, walking for a short time, hanging up my washing, feeding the dogs, stacking the dishwasher, etc will cause the pain to ramp up quickly. My activities is are pretty limited, sitting and laying down are the least painful. I spend most my day writing away at this stuff, emails etc. I watch Netflix etc while I do. I often sit back and stretch my back, change position, just watch my tablet. I dont really sit still long, while sitting is one of the least painful things I can do, sitting in the same position irritates things. Laying down has its issues too with spasms causing pain and issues falling asleep. I have to be really really tired and generally I need to have taken my night meds to push me over the edge to actually fall asleep. Sleep is an issue in its self. I do manage to get myself into town and go to a servo on the outskirts of town and every few days I go into town to get actual food etc. Both take it out of me, shopping more so. I avoid driving further than that, I try to have my appointments via phone or video conferance. If I need to go to the city for an appointment, I can do it but thats about it for the day. Im pretty much self sufficient, doing the tasks I need to do for myself, but once Ive done that I dont have much more that I am capable of doing. Im not capable of assisting outside of this, however being able to do this means my Dad isnt left have to do these things for me. I find anything that needs any real mental effort such as mathematics, intense thinking and concentration really difficult. Almost anything I do wears me out, it drains me of energy rapidly and I often need to laydown

I keep moving from feeling really sick to pretty average, Im on a really sick swing at the moment. I havent drunk very much today or eaten much, Ive found the only thing I can drink is Iced Coffee, anything else seems to cause really bad reflux, my stomach is really hard again, it was hard earlier today but was normal for a while. Im not interested in eating, I keep getting hot and then Im ok. Ive got a headache. Even the idea of taking my meds was a bit much and made me want to vomit.

I was trying to find my scales to weigh out some medication that is both used as a laxitive and as an antacid, Im in a bit of pain and Im not feeling great and my sister starts asking question after question, what am I doing? why am I doing? etc? etc? I got a bit flustered and told her to hold on while I plugged in my scales to charge them. Her constant questions and the way Im feeling it just overwhelmed me. I got a grump response, she doesnt ever get that sometimes she needs to stop and shut up. Cause the scales are flat I cant do what I wanted so I took a laxitive for tonight. Its not so much that Im not going, Im not going much and Im hoping that my stomach pain and how hard it is has to do with movement, so I will try that to begin with. Im thinking that its a side affect of the pain medication. With the combination of medications it contains it should minimise this but still the primary medication within the combination medication Im taking is well known for causing constipation. If I continue to feel like this Ill keep up with the laxitive for a couple of days and hopefully it will resolve itself. If I get worse Ill try and get into a doctor and get checked out, not something Im exactly thrilled to do, Ive seriously seen enough of doctors for a life time so I really dont want to see anymore if I dont have too.

I know I have an issue with her and I try not to let that influence things too much, being unwell its a bit harder. Im watching Star Trek Next Generation, Ive seen it all before I know, but having seen it, its a bit comforting at the moment. Not that any of that matters to her, it doesnt matter what Im watching she just interupts as she wants. Obviously, there are times she needs to talk to me, I have Netflix going all the time Im awake so she has no choice. But its the stupid shit, random comments, nothingness babble that drives me nuts. Then deciding that she will play stuff on youtube etc. on her phone. She just did a bunch of it a moment ago, my head isnt right, it just irritated the crap out of me. She then asked if I needed to go to hospital, kinda of a catch all when someone says their sick, she isnt really being caring, its more a if you dont need hospital shut up. If I need hospital, Id ask or more likely take myself, if I couldnt then there is always an ambulance.

I slept for 7ish hours again, but my alarm went off. I have my psychologist today, my first session with her. Im really knackered, Im having a little trouble waking up, I have to though, I need to go into town before my appointment. I dont feel so bad today, atleast at the moment, hopefully what was going on yesterday is over now. My sister said that I can use the kitchen for my appointment because she will likely be asleep, Dad will be up though and I imagine she will wake up part way through. Ill go outside, worst case scenario Id go sit in the car and do it there. I would avoid sitting anywhere I cant be sure that they cant listen in. Out the back, I can be sure no one can hear what I am on about but I can also be sure that no one can listen in or walk in without me knowing about it. I wouldnt put it past either my sister or Dad listening or walking in on purpose to get a bit of information about what I was talking about.

I really dont know whats happening with my app just at the moment but data keeps going missing. I started feeling worse, I ended up going to back to bed after my Psyhology appointment and got a few more hours sleep. Ive woken up and I still dont feel terrible well. My stomach is churning, Im still quite tired, Id go back to bed but I dont want to interfer with me going to sleep tonight. I have a light headache but more so it doesnt feel right, I dont know how to explain it but it is not a feeling Im enjoying. Its really hard to focus, to concentrate, just keeping my eyes open is a bit of a struggle. My back isnt pleasent, its managable. Walking isnt much of an issue, I havent had any foot drops today, but I havent been walking around a whole heap.

I had my Psychology appointment today, I had sent her an email basicly outling my medical and mental issues, along with my symptoms and relevant life experiences. The idea was to help her catch up as it were so when we talked she had the background to refer to, she understood the intertwined issues and complexities of my life. I wasnt sure if she would appreciate it or not, but she did, she said that it helped, though didnt read it all. We mainly did an introduction type appointment, we talked about my back in a bit of detail, depression, psychotic symptoms. She had 3 areas she wanted to concentrate on in the future. I cant remember what they are however they were great areas to concentrate on. Unlike other Psychologist, she has a good plan, a set of areas to work on and thats the key, she wants to work on them, not just talk about them. I explained thats not what I want, Im not here for talk therapy, I want to grow not just talk about things.

I got a donut this morning, Im not eating a huge amount but donuts seem to be managed ok. I mean they have the icing but other than that they are pretty bland. Its sitting on the table next to me, my sister saw the paper bag and asked what it was, knowing exactly what was in there. Which is what I called her out on and said she knew. Then it was can I have some. I said no. Why not, I gave you my chocolate bunny, blah blah blah. I stuck with my inital response of no, I dont know exactly why but I do have an issue sharing food and drink. If I buy something I buy it with the intention to eat it, the whole thing. Its like I havent really eaten it, I didnt complete my meal. I know that sounds rediculous, its not a selfish thing, like I really dont have an issue sharing things. If I buy food intended for sharing I have no problem, food like pizza, lollies etc. but a donut isnt meant to be shared, a meal isnt meant to be shared. It feels like an invasion when Mum and my sister try to have some of my meal. I dont know what they are invading and it might be a bad issue for me food wise. It might show that I have a poor view on my meals that I need to address. At the same time it just might be a thing for me that I dont like people eating part of my meals, it just might be a quirk I have.

My Dad has a number if things that drive the rest of us kinda nuts. One thing he does is set the timer for the microwave by the 30sec button, the buttons dont all work, it only goes up to number 6. Dad for one reason or another cant work that out. It is frustrating as hell hearing the 30sec button repeatedly pushed to get to 15 minutes etc. My sister, being my sister, decided to yet again, question my Dad as to why he does it that way. When she asks questions like that, there is a way about it which is very acusactional. Dad obviously wasnt keen on playing that game tonight and responded accordingly. I think in general we are all sick of her little games, her "Im just asking a question" when she is really telling you that she doesnt like what you're doing. She said something to me about Dads response when he went away and I told her that he was probably sick of her asking, as she has asked him a heap of times. She carried on about her forgetting, as if that should be an excuse and a reason why Dad shouldnt have responded the way he did. Because you know, its all about her. I told her that basically he was right to respond to her the way he did, her mood has soured somewhat.

You know my sister is forever asking if you have seen something of hers. At the moment she is trying to find her weet-bix slippers. Shes asked me a number of times if I have seen them. I cant remember the last time I asked if someone had seen something of mine, same goes for Mum and Dad. But my sister is so spread out through out the house. If she just kept her shit in her room she would know where her shit is.

Earlier today there was a minor, absoultly minor issue which was a little embarrassing for me. It was a little inconvienient for my sister, but one minor action and it would have been resolved completely. Instead she told my Mum. Mum then told me to deal with it. I complained to Mum that my sister shouldnt have told her, she should have come to me. Mum said she thought it was funny and basically not to be so serious. Again, sweeping what my sister did under the rug. Mum isnt getting it, I dont want or need my sister reporting to Mum about anything that is insignificant, I dont need messages from my sister about something followed up by messages from Mum. I mean maybe follow up with me first or just damn well drop it, just because you want something doesnt mean you get it, every blasted time. Mum admits that my sister sits with her or texts with her and complains about my Dad and I, for really long times, about everything we have or havent done. She winges about anytime she is told no, I mean I said no to sharing a donut, my sister would be of the opinion that there is no reason for me not to, she wouldnt understand (common for her), she just cant accept that I dont want to and that being a vaild answer, that goes for many things, I dont want to is not good enough as a response. If I dont want to and she does then that means she out ranks me or something. You have to have a reason, a reason that she agrees with.

Mum doesnt get that its not about her, I didnt find it funny. I dont find the contents of the issue funny, I dont find telling everyone in my family of the issue funny. I dont think that everytime I do or dont do something she wants me to or doesnt want me to it is reported to my Mum to get invoved, I dont think thats funny. I think its rude, frustrating, entitled and pretty pathetic. Its rude because most the time its something minor and Ive said no, rather than accepting that she goes to Mum to try and force me to do as my sister has said. How you are feeling doesnt matter either, unless you're in hospital you're not sick enough for that to matter. She even tries to use her previous "generosity" to manipulate you to do stuff she wants you to do. Ie the donut, she wanted a bit, some time ago she let me have a lindt bunny she had, that she likely wasnt going to eat, because I initially thought it was for me and I asked if I could have it believing as such. I would never ask to have or have part of something of hers. Now that was used as a reason for me to do what she wanted and to give her some of the donut. Mum often uses all the stuff my sister has done for me as reasons to do stuff for her. I have 6 months of looking after her, travelling to see her daily, buying her McDonalds and so on, I dont use that to get my way, it wouldnt be allowed. Ive got no idea how much McDonalds I bought her and it was expected that I just pay for that, there hasnt even been any acknowledgement of what Ive done and what I spent. Im not comparing, but I am sick of her running to Mummy as often as possible to tell me what to do on her behalf.

Ive been up for a few hours, I cant have my night meds for a couple more hours, I dont think Im going to make it. I think Im going to have to go lay down and set my alarm for a couple hours and get a few hours rest. Ive been going to bed and actually falling asleep regardless of the spasms.

I got a couple hours sleep, Dad came in part way though to get my sisters medication, because it couldnt wait like it has the last few nights. Anyhow, he uses a torch when he does it, which is fine, but the idiot shines the light in my eyes repeatedly and its an extremely bright AEG torch. So, it wakes me up. I just keep my eyes shut and ride it out as he will leave soon enough. My sister knows that Im not well, she could just wait, she knew it would only be a couple hours and that if it wasnt she could send Dad in then but no, interupt me shortly after going to sleep.

I feel a bit better after the sleep, I do each time. Having a rest, even a brief one, seems to calm everything down and I just feel better for a while and then I start to feel like shit again. It doesnt take long. Dad finally asked what was wrong, and I said I wasnt well and he said do I need a doctor. Its so often the responce, not whats wrong, not can I help, etc. Its not even that its palming me off, like the care of me to someone else. Its a test of how sick I am, if I dont need a doctor or the ER Im not really that sick. I have a doctors appointment on Friday but I think if Im still unwell on Monday I will try and get into a doctor then. My sister and Dad know full well that if I need the doctor or ER Ill just go to them or if I cant Id ask. Im not backwards in coming forward in this manner.

I know I tend to write like the reader knows the passage of time that I am experiencing, I try to remember that you dont. Its been about an hour since I woke up. I started out quite cold and now Im pretty warm again, my sister tried a Coles meal that I like but she didnt. She offered the left overs to me, the idea of eating just, no. My headached coming back as is the acid.

All day my sister has done stuff all, she has sat at the table playing with her pencils, my Dad has gone to bed, now all the sudden she is up and she is walking past his room to her room, with all the dogs following and carrying on. She has been doing stuff, and the dogs have been getting excited.

I dont know why she has to babble so much, just talking for the sake of talking. Im sitting watching StarTrek Next Generation, my sister listens and trys to keep up. Every so often she starts asking whats happened, whats going to happen etc. Just wait 2 seconds and you will hear what happens. Just leave me alone. Sounds a bit cruel, its 1am, Im sick and Im pretty over her crap so my tolerance is low. She was carrying on about how she hates her, like she said "I hate me" or something like that and continued with sentences like that. I completely ignored it. I care about her but that kinda BS I dont, the look at me crap, you know the comments like this that she uses to reenforce how much worse off she is than I. Almost every day she says something that sounds innocous but has an underlying jab. There is always something said that she says to indicate how hard her life is, how sick she is, there was the comment today that now she thinks she is constipated, she went yesterday, you can tell because of the pain, so one day not going isnt constipated. If she was at the moment, it wouldnt be good. I say stuff on here about how I feel, physically and emotionally that I would never, not ever, express them at home. If I made comments like my sister does, as often as she does I would be shut down so quickly its not funny. Im suprised that I have gotten away with saying that Im sick the number of times I have, that I have gotten away with napping like I have, generally it would have been such an issue. I am sure its being spoken about, not that I care.

The combination of feeling sick, my pain and mental health issues are really making for a shitty existance currently. Im finding it pretty difficult to manage, to stay positive, positive sufficiently to keep going.

I went to bed about 1am and slept through until just before 10am, probably the longest sleep Ive had in a very long time. Especially given I kept having naps during the day. I am freezing cold, Im trying to warm up but strggling. My back is pretty sore, Im really stiff. I went into town and finally got warm in the car in time to get home where the heater hasnt warmed the house yet. My back has really got quite a bit more painful. Im really tired despite all the sleep Ive had. Ive gone from being really cold to quite warm. I dont think it will be long before I go back to bed.

My sister was asleep when I left, one of the dogs wanted to come into the kitchen as I was leaving. It decided to come back up via the lounge as the door has been left slightly open, though the dogs can open the door themselves. It appears the dog came back to my sisters room or something and woke her up. That was apparently my fault. So much wakes her up and she often sleeps during the day like until midday etc. however, she refuses to shut her blasted door, there is reason after reason but if she shut the door it would resolve so many issues. It really irritates me that someone has to be blamed for everything, the dogs woke her up, its therefore my fault for not remembering that lounge doors were open, they were pretty much shut. She knows all too well that the dogs can open the door but she has to point out that someone can be blamed rather than accepting it is what it is and moving on. There was no ill intent on anyones part but that doesnt matter, she will still have go just to make her authority known. Fun fact, she has no authority.

Finances is an area that almost all of us stuggle with and Im absolutly no exception. Working fulltime hours I earn reasonable money especially given my education level. Ive worked for the corporation I do for nearly 15. I started on ok money but I have been promoted a number of times prior to my brief psychotic episode, since then I havent been promoted but I have received standard payrises. I havent received anything additional since the episode. While my income is good if I work fulltime hours, I rarely do, even more so over the past few years. With the number of health issues I face, it is rare that I am not affected by one or multiple of them on any given day and there are times where I am just not able to deal with my issues and work. My conditions fluctuate, my pain varies overtime it can increase dramatically rapidly or increase slowly, it can be impacted by what Im doing or have done, used to be affected by weather or just because. My mental health issues react to stress but can also seemingly just worsen significantly without provication. Then there is simply being sick, I tend to get sick more often than others, this has improved with working from home, but generally speaking it doesnt take much for me to get sick, if it were just that I was not feeling well then I would probably manage to work as well, but if you add pain and/or mental health issues then dealing with being sick becomes much more of a challenge, one I sometimes lose. Given my circumstances I always start on the back foot, almost always being in pain its basically my default position which means a simple illness affects me more than someone not in pain as a default. These are all things my family do not understand, they just cant get though their head that its more than just being sick.

I get sick leave obviously, I am permitted to use my annual leave as sick leave as well. My employer is very understanding of my situation. However, I generally run out of both pretty rapidly and then I am forced to use unpaid leave which obviously affects my income. For the most part my income fluctuates which makes budgeting rather difficult. If its not my conditions or just normal illness, its appointments, treatments and the like. Eventhough an appointment may only be an hour long it may take an hour to get there and back meaning basically 1/2 my day is gone. Where possibly I use services that allow for phone/video conferance where possible, working from home allows me to do this easily. Im hoping that when I return to work I can continue with the work from home arrangement. With the projection of my medical life, periods of extreme pain, the ongoing mental health conditions, I expect with the right treatment for them to reduce, that is the idea of course, but they will still be present. Time off from work will still happen, Im hoping less than I am having now but I expect that Ill have some still. How I budget for this Im not sure, its likely if all this works that I will experience a great deal of pain but limited to a couple of months per cycle. How I manage this financially Im not sure, Im not likely going to be able to put aside money in the months leading up to the painful period.

Im currently on income protection payments, this means that I am earning 20% less than my normal income. My normal income as determined by a period leading up to when I went off work. During that period I was having quite a bit of time off work dealing with my sister and my own medical needs so the payments Im recieving are quite a bit lower than what I would be getting had I been working normal hours. In addition to that they are paid monthly on the 27th of the month, rather than fortnightly as I am used to. This is making budgetting very difficult. I would be far worse off if I were not receiving the payments at all, I am very fortunate that my employer has this included in our super package, it still is very difficult just not as impossible as it would be without an income. In addition to the reduced income associated with my conditions I have to have my conditions treated, meaning greater medical expenses. So far this year I have had 7 procedures, along with this is a number of specialist appointments, then there is countless GP visits and thousands in medication alone. My medical costs are a substantial component of my expenses. The procedures should reduce going forward, they should reduce to just cystoscopies and the spinal procedure. On average Im expecting that I will have 3 procedures a year, Im hopeful that will be it for the next 5 years, after which the number of procedures will reduce further. Medication is reducing also at the moment. Im hoping that my GP and specialist visits will decrease also, however I am now seeing a Psychiatrist and a Psychologist regularly, the Psychiatrist is supposidly going to be bulk billed but I will wait to see if that actually happens. The Psychologist is $170 a session but Ive only got a few sessions left under medicare to get a rebate so it wont be long before I am paying that in full. For the rest of the year I recieve reduced medication costs as I have reached my safety net. I wouldnt think its long before I have reached the safety net for medicare as well.

I carry a lot of debt, all up including my family I would owe around $80-$90k which I have very little to show for. I have held some of this debt for probably 12-15 years. Around $30k was aquired recently while trying to help my sister with her mental health issues, a huge amount of money and an amount of money that my sister has never shows that she appreciates that I have accrued to assist her. That said she hasnt really showen that she appreciates what I did for her over that 6 month period. After I move out I will have to go bankrupt, I have been working with my Financial Planner over the past around 6 months or there abouts, we have been able to secure moritoriums, which I hope that I can continue to keep until I am in a position to apply for bankruptcy. I have avoided going bankrupt for years because I couldnt get a clear understanding as to how that would affect my parents and what they have lent me. Turns out I can pay them back outside of the bankruptcy, though I dont foresee that I will be in a position to do that in the near future. Going bankrupt would resolve a great deal of my debts within 3 years, it would prevent any collection activity etc but most importantly I would be free from the debts after the 3 year period and I would get a fresh start.

Once I am back to work on normal hours I intend to move out, I have to I cant stay living at home much longer, the potential for my back to be pain free and to leave home are the only things keeping me going. I need to be earning a full time income to afford to move out and live on my own again. I have done a rough budget and it would appear that I can afford to under these circumstances but I do need to sit down and work it out a bit more exactly. I need to really make sure that I am not putting myself in a bad situation and that I am going to be able to afford my medical costs along with all the normal living costs people incur. Im hoping that I can also get NDIS, that potentially will fund my Psychology appointments, which will save me quite a bit of money. They should also help fund Lite n Easy which would reduce my food costs significantly. They would assist with a range of household needs, etc. I dont know what other support they will provide. At the moment it is a matter of getting myself in a position where I can reapply for NDIS and this time am successful.

My family are of the opinion that I handle my money poorly. I would agree that I have and continue to make poor decisions, I smoke and rather heavily. I drink iced coffee and mother most every day which I do get adds up. I have been an alcoholic, I smoked then too so I burnt through a lot of money during that period, like a crap load of money. I got right into alternative brewing, it cost a bit to get set up. Mum kinda messed it up for me in the end and I stopped doing it, thats considered me wasting money. I admit that I have and continue to use money in unwise ways, though both my Mum and sister smoke and spend quite a bit of money, often using my Dads money. There has been a few questions raised about my sisters use of Dads money, Mum uses Dads money quite a lot, almost as if its hers. I know I need to quit smoking, I really do given my bank balance and the length of time before I get paid next. Its not just that simple though as anyone who has tried can tell. While I have made a number of poor decisions over my life in general and financially, as most people do I imagine, I think in general I manage my finances as well as I can.

One of my biggest hinderences started when I had my brief psychotic episode, my parents moved me into one of their rental properties. The rent was higher than where I was living at the time, but Mum said that she would help by providing meals. This never occurred. Even with this, I failed to maintain many of my financial obligations, including rent and loan repayments, I did end up defaulting on my loans. To be honest I have no idea what I actually did with my money during this time. I know I ate out a lot, I had a lot of medical costs and I was on insurance payments, like I am now, so my income was reduced. I was on a common antipsychotic, but in an extremely high dose, for the most part I dont really think I had much of an idea as to what I was doing or what was going on around me at all. Living alone, Im really unsure how I managed to survive that period of my life, I had very little support, as I said Mum didnt follow through with meals and to the best of my memory she didnt come and visit even though I was less than 10min away, she was apparently scared she would walk in on me having taken my life. Dad came around a on a number of occassions, I dont remember one way or the other regarding my sister. For the most part as I remember, I was essentially on my own, I was generally out of it due to my medication so how I accomplished day to day tasks I have no idea.

I wasnt paying rent during this time, for the most part it wasnt that I didnt want to it was because I couldnt afford it and because I couldnt work out my money to save my life. Mentally I couldnt work that shit out. Neither my Mum or Dad offered to assist me to manage my money, to the best of my knowledge even though they have claimed that I am shit with money they have never offered to assist me in managing my finances. Eventually, I ended up owing my parents $10k, so their answer was to make me move back in with them and my sister so that I didnt pay so much rent etc and could repay them what I owed. I was put into what was the office as this was the only room left, I didnt exactly get the whole room, it still contained the contents of the office. It was the best they could provide, but with that said, I was still being punished. I knew full well that I wasnt wanted there, it was a small house and really not enough room for all of us. There was a lot of anger and disappointment towards me, they had little understanding or appreciation for my situation or how the medication effected me. This position hasnt really changed in over a decade. My family still have quite negative feelings towards me, for what ever reason they just cant accept that I am not the same as the average person, Im affected by a number of medical and mental conditions, along with the effects of my medications on me, especially when medications are changed.

The problem with moving me in with them to repay the loan, was that the expectation wasnt that a affordable arrangement was agreed upon and I made regular payments that I could manage. Again there was no discussion about my financial position, my affordability, my expenses etc. The expectation was simple, what I had left I gave them. I didnt spend unneccessarily, the idea was to repay them as quickly as possible. I had to pay board, eventually I had to take care of my food and other expenses, all reasonable though not expected of my sister. The problem is that there was no allowance to put money aside for future needs. Fortnight to fortnight I had no money left over at the end. So when future financial issues arose I had to rely on my parents to help me, car needed to be replaced I had to borrow the money, medical expenses, etc. I had to borrow money from my parents. So, from the time I went into debt with my parents due to the rent, I have been in a cycle of repaying them and reborrowing from them. Even when I borrowed money from a bank and paid them out in full I had to borrow money again to help my sister and then my subsequent medical issues as a result and then my back issues. While I no longer owed Mum and Dad the money I hadnt had sufficient time to get money behind me. I wasnt exactly in a financial position to put much money aside with my repayments. The other aspect is that in this case I did not want to borrow the money, I felt compelled, I felt that I had no choice but to put myself into debt for the sake of my sisters health. It was apparent that Dad was not going to take the nesseccary actions to ensure my sister was looked after, that she understood what doctors were saying, that someone was keeping up with her treatment etc. Even when I started to struggle with my own mental health my Dad didnt step up and step in and relieve me of at least some of my burden. While Dad was not willing to take the lead in my sisters situation, he was also not willing to provide any financial support in me doing so except to lend me the money by him borrowing from his mortgage and the condition being that I would be required to make the repayments along with interest. While he did visit her after work, he placed the majority of the responcibility for my sister on me as well as the financial burden of doing so, he provided me no assistance. I have been left significantly in debt for simply looking after my sister through a difficult time, my Dad did also spend quite a bit of money but it is his daughter and in an instance such as 6 months in a number of hospitals he should expect to be paying a decent amount of money and not shifting a significant part of it to me. This while knowing that I am struggling mentally, as was my sister and both in need of support, my Dad was telling me that I need to go back to work. I couldnt as the doctors were providing medical certificates for my continued time off.

My hope is that returning to fulltime hours, moving out and having a stricker budget and going bankrupt will lead to financial freedom and a chance to put money aside for upcoming medical treatment etc.

Im not just hurt that my Dad has chosen to lay so much financial burden at my feet for my sisters situation, I would have thought that given I took the daily burden of dealing with her and her medical teams, allowing him to continue to work, he would have provided some form of financial assistance to me to help me and aid in protecting my financial position during this period. The other aspect that hurts me is how little appreciation there seems to be for everything I did. Mum talks about it like she has done stuff like it before, I mean she has been with us kids while in hospital before and she equates that to what I went through. At no time did she have to sit for hours in multiple hospitals trying to get help for a suicidal child, she didnt have to deal with suicide attempts and the aftermath of that, she didnt have to deal with violent outbursts on a near daily basis and she didnt have to deal with one of us being in hospital for close to 6 months. Again Mum is diminishing what I went through, I seriously dont get what is with my family diminishing what I have and am going through when ever they can. On the flip side my sister went through an amazingly difficult time that went on for an extremely long time. My sister talks about it being similar to my Mum, how she has come down for me in hospital etc. Its treated as if I am just paying her back, like Ive never been there for her with all her hospitalisations and there has been a lot of them. Whenever I have been in hospital, the maximum time being a month, I have shown appreciation for what my family had done for me. I hadnt sat and instructed them to put bag after bag together of clothing etc. It wasnt so much that it was putting the bag together it was that we had pick certain items that were spread through out the house, often no one knowing exactly where the item is. It could take over an hour, we used facetime and we'd still get it wrong, it was still not enough. Along with all the McDonalds that was bought for her. Ofcourse Dad is just letting me hang out there financially. I really dont feel like there is any appreciation. Then there is the differences in stories between my sister and my Mum, my sister says Mum did this and that, when questioned Mum says it never happened, in most cases theres not a variation to the event, simply it didnt occur. Along with that my sister has become all friendly again with Mum, the person she claims caused her to be in hospital in the situation she was in the first place, said horrible things while in hospital and abused her. If Mum caused all this why would she come out of hospital and soon after want to be friends with Mum again, to put herself back in that position. Unless of couse so much of what was said was bullshit. Im sorry if thats a bit blunt, even inappropriate but its pretty much the way Im seeing it until I can be given a more satisfactory explanation. My sister says Mum has changed, though I dont believe that for a moment. The bullshit that my sister has been saying was coming unraveled, we were starting to work out her lies, manipulations and 1/2 truths. The best defence is to get back on mums side and then the questioning stops. Mum will protect my sisters and her relationship above all else and thats whats happened. All the questioning, all the horrible things she has said etc have been forgotten and its back to normal. She got away with it yet again and will continue to do so. Even the family therapy stuff has fallen by the way side, this would not be in my sisters favour to attend as it would bring up everything she has said, that she is trying to get Mum to forget or to not know. Mum is back on my sisters side, she is protecting my sister etc. So I have no idea what the whole hospital, self harm and suicide attempts were about. I feel very used and rather abused by the whole situation, though at the same time quite confused because I dont know how much of it was real, I mean it could all be real and associated with mental health, I dont know. I dont know exactly what happened but it doesnt stop my feelings. It is hard not knowing and being confident of what exactly happened, what was going on in her head, the actual events between Mum and my sister.

I have felt a little better today than I have, Ive had a nap, I went for a second one but I spasmed so hard that I hurt my neck, I kept trying to sleep and spasmed again quite hard and really hurt my back and that was the end of me trying to sleep. Im pretty tired but at the same time Im quite awake. Once I have my night meds I should be able to sleep. I have just had some tea, I didnt get through a full serving. Im feeling quite ill again, I have acid galore. I keep bouncing between hot and cold, Im quite hot at the moment, given that its 10pm, the air con has been going all day at the same tempreture, I really shouldnt have any fluctuations. The longer I sit after eating the worse I feel, its not sitting well. I dont suppose I really thought it would. Im gonna get up early tomorrow and try and make an appointment with the duty doctor tomorrow. I have to have my night meds soon and honestly I dont feel like it, I feel like Ill burst. I havent had anything to drink since tea, even that seems like too much. I really feel like I want to throw up randomly and I have a headache again. Not to labour this, but I am feeling worse and worse as time goes on and its been like an hour since I ate.

Im having spasms in my neck while sitting at my tablet, its very uncomfortable. Im struggling with spasms, pain, the depression, the psychotic symptoms, being sick and being broke. Im really over it all. Im so tired, Im so sick of dealing with all this, almost alone. My sister looks really down tonight and Ive asked a couple times if shes ok, I asked her if she needed to talk. I cant say Im feeling 100% up for it but mentally probably better than I have been in a while. She said no. A little while later she came in and said it was the first time in a while I had asked that and then asked why. I said it was cause she looked really sad. I didnt elaborate further. When she asked why it was kinda acusational, I might be reading into things, but at the same time, why ask why. I havent asked for a long time because I havent had the personal capacity to deal with a conversation about someone elses mental situation. Its not a matter of not caring, honestly 6 months of being so intensely involved and dealing with her situation so full on was very draining, even for a mentally stable person, I am not that. I ended up with my own mental health issues rearising. Which have persisted along with all the other issues I have to deal with. So no Im not up to asking if she needs to talk very much, Im not capable for the most part. The other aspect is that no one, including my sister, has not come to me and asked if I need to talk. I am pretty positive that she would be having the opportunity to speak to Mum, an oppotunity I am not provided. I find it somewhat amusing and offensive that my sister questions why I had asked in a manner that was more an accusation than and an actual query, but in the same time frame and longer, she hasnt asked me the same thing.

Today has been a weirdly long day. I was up late well into the morning, I took my medication but felt incredibly sick on and off over the night and the idea of laying down was not one I enjoyed entertaining. Because I had taken my night meds and I was already really tired I decided eventually to go to bed, I got part way to doing that and then sat dozing on and off for a number of hours. Eventually I did go to bed, but I had to be up a couple hours later to make an appointment with the duty doctor. I made the appointment and went back to bed a short time later and a couple hours later was woken by my sister after her medication because for some reason we had started taking the next days worth in the morning not at night like normal. So I havent had much sleep.

I saw the doctor, he is concerned that I have an infection in my intestines or a blockage. I am booked in for an xray and blood tests tomorrow, hopefully Wednesday we will know what is going on. Unfortunately, they couldnt give me anything to calm the symptoms, Im on the maximum does of the medication to calm the acid reflux. OTC medication isnt helping and while he wasnt a fan of it, he concluded that drinking milk drinks is about the only thing calming that down. Im tired but cant sleep the spasms are really bad, didnt matter what position I was in the spasms associated to that position were more aggressive then normal. My stomach is really upset, its really hard, it hurts. I fee like throwing up most the time and then there is the acid that keeps bubbling up. I feel really weak, I have a constant headache and Im very achy. I go from being cold to quite warm and back again, though I have no fever. Eating is a challenge as is getting sufficient fluids down. Overall I feel incredibly unwell, I really dont know what to do with myself. I would dearly love to just lay down, curl up and rest, but the spasms prohibit that. Thats not mentioning my pain, which is managable but still quite restrictive.

I went to have a shower, Im sure that Mum is aware that I have been unwell for about a week, I told her what the doctor had said. After I had my shower and sat down a bit I got a text from my Mum saying that we might need to take Dad to the hospital. To do his blood pressure and let me know he feels really sick and sore. I dont know why but regardless of my condition, no matter how I feel the needs of the rest of the family come first. I dont know why she couldnt reach out to my sister and ask her to keep an eye on him. Or better yet while Dad was with her (he was sitting with her when I went up) why didnt she do his blood pressure. If she wanted him to go to hospital why didnt she organise it. Why was it dumped on me, not that Dad is something that is dumped, but the medical issues. Its like my sister being sick, she and Dad dumped that on me. Again, I am sick and she is ignoring it and trying to give me added responsibility. I have enough medical issues of my own to deal with without having to take on the medical concerns of others. Its like mine just dont matter, they just arent serious enough.

Ive started getting really bad chest pains again, Ive been through this before and there isnt anything wrong with my heart, I had every test known and its 100%, we basically put it down to anxiety. Im feeling really hot all the sudden, like its 10 degrees outside and Im tempted to go sit out there for a while and try and cool down. I cant believe how little fun this is. Its really one thing after another, I didnt say it before but there is a good chance that no matter what is wrong with my stomach, its probably to do with my medication, particularly my pain medication.

I have been feeling so unwell that I have defied Dad and have been smoking inside. I have restricted it to when he is not in the room and tried to restrict it to when its too cold outside.

Ive been eating minimal amounts, primarily foods that are pretty much carbs seem easiest to hold down. I had some microwave hot chips yesterday and it went ok. So I tried that for tea tonight, it hasnt gone nearly as well, I feel freaking terrible, I really just want to throw up everything Ive consumed in the past hour. I am so hot, its apparently 20 degrees inside, I could swear its 40 degrees. Im in my typical trackies and tshirt, the only real variation to this is when I put on a hoodie or an oodie. Im so tempted to take of my trackies to try and cool down.

My Mum rarely buys me anything, if she does its even more rare that its exactly what I drink/eat/use etc. Generally its kinda like what I like but the diet version or a version that can she can get hold of without going out of her way. Its a nice gesture but its limited to what is easiest. Today she bought me the iced coffee I like, the right one, the right size, everything was right. I got home and Dad told me that she had bought it for me, however he, without waiting to ask me or anything, decided to open it and have some. Its not that I have a problem with him having some, but for Mum actually got it right and he spoiled it. He never drinks my iced coffee, he never asks but on this occassion he felt he could just take it.

My Dad has gone to bed, as I said earlier he is unwell. So not long after him going to bed my sister decides to go into the bathroom, which is across from Dads room, and starts making a rukus, I could hear it all the way down in the kitchen, there was banging and clanging. I went up and told her to stop as she is making a hell of a noise. Apparently Dad has told her she can do what she wants at night. I would think being at least a little respectful and quiet. She wasnt happy with me telling her to stop.

I have written a post which started out to be something about depression, it evolved into more than that. I dont know how it began but I wanted to give things a bit of visualisation. I did hold back a bit as I had written a piece sometime ago about my hallucinations and my descriptions were a bit too realistic. So I was a bit more tame. Thats one thing Id really like to do one day, sit down with someone, anyone and recount my hallucinations in detail. Id hoped to do that here, but it wasnt allowed, they thought it would trigger others. Its not something professionals actually talk about, I dont know who I would talk to about it and I guess that there really is little point.

Depression has reach out and siezed me, taken me captive. I have been stripped of my freedoms, stripped naked exposed to al left bound and gagged completely vunerable. Its like a storm with rain and hail is pounding me from above, building up above me causing a great deal weight to build up and weigh upon me, from below the hands of the dead are reaching up from beneath me, taking hold of me and pulling me down. In front of me I face the collective force of 300 spartans holding the pass. Those around me see all this happening, but when they look upon my face they see a photoshop image of my face with tears running down my face and a smile. All they see is the smile, they miss the missery in my eyes, the tears flowing freely, the hands reach up taking hold of my limbs, grasping at my flesh and trying to unite me with the earth below. The weight of countless hours of rain and hail accumulating above me, resting on my body with equal force, relentlessly weighing me down, making it impossible to rise up. 300 Spartans stand before me, everytime I take a step forward they push back preventing my every advancement.

Im incredibly sad, a sadness that is all consuming and completely overwhelming. You may not see me cry but within I weep uncontrollably, rivers of tears flow uncontrollaby over my soul. I bathe in a pool of misery, my desire to rest beneth the surface until the last bubble surfaces. At this game called life I have failed miserably, I have proven myself worthless, I have no motivation to pursue the game further, it is not worth the attempt. I am stuck unable to move, overwhelmed by life by the endless decisions to be made, by the decisions forced upon me to be made on behalf of others. Moving forward feels like I am digging my way through a mountain of jelly with a tea spoon, I move forward but am pushed back as the jelly collasps, all my effort and all my succcesses are destroyed and I am forced backwards to start again, only to be met with hinderance after hinderance until there is another collasp and I am again back at the start. I feel like the people around me, the responcibilies of existence, are like being pulled along behind a car over asphalt slowly, I am eaten at a little at a time, I am unable to stop it, I have to just accept it, just allow my very being to be devoured, to be torn at. My existence is futile and frustrating. It's like being trapt in a room with one exit and everytime you open that door another appears. You open the door and again another door appears and this keeps happening. The frustration is all consuming, you escape just to be trapt again. You keep trying in desperation, recognising the futility in frustration you give in.

I have stopped referring to my existence as life, I cant consider what I experience as life. Life is vibrant, joyful, it is enriching and enriches others. What I experience is not that, I exist in that I am a being that floats day to day through the passage of time. My days vary only in the pain and torment I experience. I enrich no one elses life, I provide no benefit to those around me, Im a drain on resources, Im am not looked upon kindly, there is no purpose to my existence, my existence is unremarkable. But I must persist in pursuing this existence, I must take continue in its futility as it is expected of me, demanded of me to persist even though it has become apparent to me that that continued effort will be inconsequential. My life is over and I merely exist now, this existence is of no consequence, it is full of pain, difficulties, hardships, doctors and disappointment. The is no joy, there is little love felt and there is no pleasure. What's the point in continuing to float down the passage of time making no impact on the world around me. What's the point in being an observer of the lives of others. Never having a true life of your own, never participating in the lives of others. Never experiencing fulfilment, even if you were to come close something would taint the experience. Something would rob you of your sense of accomlishment, you sense that you have made a difference.

I have become a shell of a man, with no more substance than a shadow. I float through existance like some kind of apparition moving through out a dilapidated house without leaving any evidence of their existance. They leave no foot print, dust is not moved by their hands as they hold onto rails. I float through my existance making so little impact that the dust isnt even disturbed. I matter so little that even in my own existance I have to weight, I have no influence and I mean nothing. How can I expect that I would matter in anothers life when I dont in my own?

Without warning my heart takes flight like a cheeta chasing prey. Im captured by anxiety, like dominos falling one after the other feelings and reactions start to occur. I am overcome by the feeling of guilt, as if I have committed some great crime or sin. I am then thrown into the Brazen bull and the tempreture rapidly increases. My mind is like a carousell with a V8 motor, with a great many thoughts cycling round at incredible speed while other thoughts bounce up and down at break neck speed. A whirring, whizzing blur of thoughts is created, neurons firing rapidly, my brain aglow with energy, partial thoughts and ideation moving around my brain. I start to shake as if my body contained within itself a giant storm, lightening striking rapidly, followed by massive claps of thunder.

Not as often, not with any regularity anxiety reaches its claw deep within my chest and takes hold of my heart, squeezing tightly as if my heart were a stress ball. The pain is intense and radiates through out my chest. My hands clutch my chests as I buckle over, slowly crumpling like a soda can being crushed. Then as rapidly as its claw grasped my heart the pressure was released and the experience over.

My existance is sporatically interupted by a variety of psychotic events, for a time my mind becomes a speakerbank playing a selection of different tracks. The sound of an antique radio playing adverts of the era to the sounds of tens of thousands of souls screaming in torture and agony. I can be doing anything and then notice people who are observing me, they are studying me, they are making reports on me which they are forwarding to hell. It takes a moment to realise that the people are incomplete, standing at normal height, yet having no legs, writing reports with no arms. Laying in bed I feel the familiar feeling of a great beast attempting to get on my bed to attack me, or the head of my bed lifting trying to tip me into a great chasm

The world seems to fade away as if I no longer belong to it, as if I were playing a video game and I were just a character. Or the world we are in is fake, as are the people within it and there is portal type things where I can jump through to the "real" world

Random abductions of my mind seem to occur where I function but my mind is no longer within my head. My mind is returned and its like waking up suddenly doing mach 1 through an asteroid field. Trying to regain conciousness and determine what is happening instantly, its quite a shock to the system.

Pain is a constant factor, walking like you are being held onto, pulled deep beneath you. The feeling of demons ripping at your back, tearing muscles from your spine. While simultaneously having bands wrapped around your lumbar and thorasic, making your back so tightly wound. A piercing sensation pierces just above you butt crack. Your spine is more steel rod than the flexible mass of bone and cartilge that you once had. Bending fills you with intense pain all through your spine. It doesnt matter if your sitting, stand, walking or laying down, there is pain, its a different pain depending on the position, and the intensity varies with the length of time that you do it. Everytime you move, you deal with the concequence being pain. Its something you cant escape

Spasms like being ripped from one position to another suddenly, to have a cattle prod jammed deep inside your lumbar causing your back to hunch forward instantly, my shoulder becomes a rocket launcher, thrusting the shoulder backwards and then the arm flying. They are at their worst when laying down making sleep difficult and often impossible to achieve.

I feel compelled to present a fabricated and fictitious representation of myself that is more palatable to those around me. The representation presented to the world suppresses the things above and/or there manifestations. I dont feel that is is permitted by my family or in general to express any of these things. Our society allows only limited expressions of how we feel, what we experience. A simple example is asking someone how they feel, the answer must be uplifting, it must be positive. It is not acceptable to answer honestly. Even when you go to the doctor, they ask the question and you say ok. Then go on to to describe the color and consistancy of their vomit. Talking about your mental health concerns, even something so commonly experienced as depression is frowned upon outside a professional environment. If you talk to anyone outside your professional supports and potentially family and very close friends you chose your words very carefully. Its almost the equivelent of talking about your sex life with your parents. You would think that within the confines of your family however you would be free to talk openly, but within my family, I am also compelled to present the fabricated and fictious representations to them. I am rarely good at this however, it takes a great deal of energy to present yourself in a way you are not, in a manner in which you do not feel. Trying to hide your emotions, your pain, your mental health conditions and their presentations is very taxing. Being forced to do it at home, with your family, on an almost continual basis is overwhelming, its not something they understand. That just because they dont want to believe that my situation is what it is that the effects and presentations of my conditions are affected. Regardless of the opinions of others the conditions remain and all attempts by me to cover them up, do not diminish the actual impact they have on my lfe

Ive just uploaded and am about to go to bed. My Dad is in bed and now its on about going in and taking his blood pressure, so if Dad has actually fallen asleep they want me to wake him up and take his blood pressure. I couldnt remember where my blood pressure monitor was so my sister wanted me to go in and check on him, I know if I open the door to his room he will wake up so I said no. Seriously, if he is actually asleep just leave him alone especially if he is that sick. My sister said that he could be laying there dead, me checking on him isnt going to change that, it would be really unlikely that I would go in when he was dying and be of any help. The likelyhood is that he is asleep or atleast resting so leaving him to it is the wisest move, if he has passed away which I highly doubt, then it doesnt matter if we check on him now or tomorrow morning.

One thing with this issue Im facing is Im tired a lot, my sleep seems to be affected by everything, so now I am sleeping a lot again. I didnt sleep much yesterday and today I havent slept much, I did try to have a nap but spasms got the best of me. Its approaching 1am, Ive taken my night meds, so Im hoping to fall asleep soon. Im hoping that the spasms dont cause me to get frustrated and give up tonight. I keep getting the feeling that my brain is walking through water, a sluggish feeling, like trying to work but meeting a great deal of resistance that wasnt expected or designed for, along with this there is a floating feeling, a feeling almost of non-existance.

My sister is doing shit, I dont know what. She could be dealing with her plants, a project she has, whatever. Im not against her having projects and that or her plants, though I do with they would all stay out of the kitchen more than they do. What bugs my is the attitude she has or at least I percieve she has. Its this attitude or I dunno, something like I have to do everything, I have so much on my plate, Im so overwhelmed, why do I not receive some kind of help, why am I doing this alone. If she were doing household chores and no one was assisting and they could then sure, attitude away, I agree. But she got into plants and these projects, she chose the path she is on, she needs to accept the concequences of that choice. Its not up to anyone else to take upon themselves the consequences of your choices or share in the work, often the tedious and unrewarding aspects of her hobbies. When you are unwilling to help her she becomes upset and she has an attitude. I am rarely willing to invest my time and effort into another persons hobbies etc. Its not because I am a arsehole but I have no interest in having hobbies etc of my own, why would I want to share in someone elses, moreover it would stand to reason that I would be resentful if forced to participate. If it were to have happened the once that she got in over her head, maybe even twice but it occurs on almost every occassion and someone is required to participate in some way to help her. Even if no one is required to help, she want help, she wants to avoid the tedious and unrewarding aspects of her projects and hobbies, she does her best to pass those things to others. She complains the whole way through doing them. Cleaning up after herself is one of those things she has an issue with, its not that uncommon that she just leaves the mess for someone else.

Again I have no problem with her having prjects or hobbies etc but I think she should have tasks to be completed regularly, like myself. They should be done before anything else. Looking after the dogs in general should be up to her. Everything shouldnt be left to Dad and I, or Dad while Im not able to help. I shouldnt be the only one with regular tasks to complete. If I am to be assigned tasks then everyone should be. The concept of me being healthier than Dad or my sister cant be factored into it, while it would be hard for me, the tasks to be done need to be evenly and fairly distributed through the family, with consideration to each persons limitations. Mum now having NDIS we should get some house hold cleaning in, my sister refuses to use hers for that purpose due to the crap everywhere. Mum wont care about that.

Its an example of something I really cant stand, Im clearly depressed, Ive lost enjoyment in many things, though I do find writing, enjoyable and theraputic. Given that I dont understand why there is such an issue with me doing it. As I dont have anything that I do in my downtime other then writing and the writing was not viewed as being significant to my sister and by extension my Mum, in their mind Im not doing anything, I spend the whole day doing nothing or at the very least what I was doing was unimportant. Therefore I am free to do things to help them, I am available to the things they want me to do, the things they dont want to do. The idea that I do not have the desire to do much, that I am not up to being active is missed. If I wanted to participate in a hobby, if I wanted to be busy, occupied by menial taskstasks, etc. then I would do something towards that. I dont have hobbies, I do not fill my days with activities because I dont want to be spending my day doing pretty well anything. If I have lost enjoyment in doing the things I like to do, replacing them with things I do not like to do or want to do is not the way to address the situation. Simply put if you're depressed and lost interested in things, being forced to do things for others, to be involved in their hobbies or to do stuff to make way for them to have more time for their hobbies. I didnt lose interest, I didnt stop doing things to make way for other peoples activities, to make way for addition chores. It happened because I am sick. It would be good if I was allowed to be sick, that my symptoms were respected and allowed to run their course.

I got a number of hours of sleep, I woke up before my alarm. My stomach isnt too bad this morning, its uncomfortable but ok. I have xrays etc shortly, when I get home I wouldnt be that suprised if I go to back bed. I really dont feel like doing more tests for yet another issue, Im pretty well at my limit to deal with medical issues, mentally but also financially. My scan today has been bulk billed fortunately. By the time I had got to the radiologist I was feeling much much worse. My stomach hates me, like I'm a Jedi Master and it's a Sith Lord. I'm starting to get my headache again and I've lost all energy. I really want to vomit but there isn't anything to bring up. As time goes on I more intensly feel aweful. I'm having a really hard time with disassociation this morning, it's like my brain has malfanctioning autofocus. I was standing at the counter to have my xray and all the sudden the world seemed to pull away from me, it was like everything went out of focus, the world seemed to became distant, like looking at it as if its on the horizon. Suddenly the world snaps back into focus and everything returns to normal. This has been the way of it today.

I went and had my blood test, it took a few shots to get some blood, even then it was just the minimum they needed. The person that did it said that I was clearly extremly dehydrated, which doesnt suprise me as I am struggling to get any fluids down or food. I have an appointment on Friday when I will get the results for everything. My shoulders and upper arms are incredibly sore, I think I have hurt them when I have been having spasms, the spasms there can be quite intense. I have gotten home thankfully, Ive sat down and had something to drink, I did buy a donut in town but Im not interested in eating it at the moment. I intend to go back to bed shortly and try and get some more sleep. Im really tired but there is another level to it, like a underlying weakness, an exhustion deep down within me that I cant seem to get sufficient sleep to overcome. The compulsion to sleep or at least rest is almost overwhelming. I am just waiting until I can take my morning medication before I go to bed.

Dad and I had a talk about my sister, it turns out that my sister has been trying to get the money that I used of hers to pay to help look after her out of Mum. I have told my sister what I need from her to submit a claim for the grant, which given the time frame I doubt they would accept now. My sister has been picking stuff up for Mum and organised something for my Dad to pick up because one moment we are doing it, except she is the only one who has been doing it, Dad hasnt done it for months. Ive sent Mum an email to not lend money based on what I owe to be paid with the grant, I have asked my sister many times for documents and she hasnt provided them, it would now be too late to submit the proposal. Its been going on for ages and my sister hasnt done anything. Added to which Im putting in a proposal for me in a few months. I dont want Mum to end up out of pocket because my sister cant do what she needs to. I do find it interesting that my Mum is lending my sister money, and not me, when my sister has been buying anything not nailed down and she has said about taking my sisters card off her. My sister is going to put herself in a worse position than Im in the rate she is going. Dad, me and Mum are going to have to have a good talk about things. The money I owe within the family was used almost exclusively in the persuit of looking after my sister, in making sure she was correctly cared for, essentially on behalf of the family, but I have also had the costs of doing so imposed upon me. I dont think thats fair, but if I could have at least part of it covered by work then that was something. The amount of anxiety that I feel having had this talk with Dad is really high. I get Dad doesnt have much money, I dont think that its fair to put the bill for my sister at my feet based on this. I have enough financial issues of my own and that is well know. This also just goes to show how little appreciation my sister and family have for what I did, for what I was put through, how the situation affected me mentally and still does. Now, because of all this I carry a large debt, I have just asked the possiblity of getting my super to pay for this. I really feel that I have been completely taken advantage of by my sister and my Dad and now I am just having my nose rubbed in it. Its no wonder I have some of the issues I have. Heres the thing, I can completely see my family dumping all this at my feet and allowing me to sink in it, to protect my sister and her financial position.

My sisters doctor has sent her to ER again, her body is really swollen, so this will be interesting how that turns out. I got a couple hours sleep, I feel a little better but I think Ill go back to bed in a little bit. I didnt get a huge amount of sleep when I was in bed, I got hammered with spasms when I laid down, I was so tired though I just kept pushing through until I fell asleep. I feel very unwell in my stomach, its churning, Im incredibly achy and trying to keep my eyes open is a bit hard. I have a reasonable headache and keep feeling like I need to breath in deep, like Im not getting enough oxygen in.

For nearly 6 months I looked after my sister, I visited her nearly every day, for weeks I bought her McDonalds evey visit, I bought her drinks quite regularly through out. I had to buy fuel, drinks for myself, I was missing meals to save money, I ate the meals as I could, most stuff was on the run as little time was left to look after myself properly. When I was at home I had dogs to feed, dishes to do, look after my finances, look after my medical needs, attend doctors appointments, have procedures, etc. I still had my own life to attend to. I stopped working after a month of looking after her, I was starting to experience worsening mental health, the irratic need to urgently leave work became a concern, work had noticed my own worsening condition and the concern regarding my leave they recommended that I take some time off to address this issue. The way that all my sudden leave to attend to my sister would look further up the chain would be negative, taking extended leave would minimise this. Had I not taken leave and continued to attempt to look after my sister, deal with urgent leave, deal with my own mental and medical concerns and attend to things at home, I would have eventually been forced to in form of being hospitalised, of that Im sure. My mental health issues were/are quite severe, directly influenced by my sisters issues. In amoungst this I have had to undergo a number of procedures for my back, which caused significantly increased pain and increases in pain medication.

It was a requirement that I look after my sister, she was unable to comprehend or retain the information medical professionals were providing her. She was irratic and it was a challenge to help maintain her mood, her mental stability. If I did not come down she would become extremely upset. When I wasnt with her I would recieve multiple phone calls from her. It was not uncommon for my sister to be on the phone yelling and screaming at me, particularly if I were not to come down and see her. The whole period of time was emotionally very draining, it was a period of great stress.

Dad visited my syster after work and on weekends during this time, he bought her tea each night because she couldnt eat the food at any of the hospitals. However, I dealt with the medical aspects day to day and helped in looking after her. Spending days talking to her about Mum, what she has done to my sister, how she has abused and hurt her. I also had to keep Mum and Dad informed as to what is happening with my sister. Keeping in mind I needed to tell Mum without telling Mum what my sister was saying about her. Mum didnt come down, we got a number of reasons why. I went down pretty much every day, Mum had every opportunity to ask me to bring her down with me the next day, but chose not to. Mums ability to get to my sister was the least of my concerns given my current situation.

I gave up my life, work, jepordised my health and finances for nearly half a year. My relationship with my Mum, Ill admit was not great before this worsened, a significant rift developed between us and the same occured for her and Dad, based on what my sister was saying my Mum had said and done to her. Not to long after my sister got home from hospital things started to return to normal between her and Mum, this was after a period of her completely hating on Mum. It was like she went from blaming and hating Mum to her best friend again overnight. From that some questions were raised about what my sister had been saying and Dad posed them to Mum who stated that she had not said or done those thing, most of which were incredibly horrible things. One of the main things that was said was that Mum was sending my sister out everyday to pick stuff up from buy swap sell, she was out most every day and she was blaming Mum for this every time. As it turns out, my sister was going out for herself and Mum was adding to the list, granted that would frustrate the hell out of me, but not what we were being told.

With everything I gave up, how sick I got, how much debt I accrued, it now appears that the reasons my sister has given everyone, including my Dad and I for her situation was significantly fabricated. I dont understand whats going on, I dont understand why she would make up stories about Mum and what she has said and done, why she would make up stories about Mum to justify why she attempted suicide, why all the sudden she would stop being Mums best friend as she has been for years and turn to me only to come out of hospital and shortly after return to being Mums best friend again. I feel like we have been made to play a part in a long term game my sister has been playing. As if she were manipulating the whole family, twisting things said and done, adding to the story and rewriting our history. For what purpose I can not tell, I dont understand what she hopes to achieve, the best explanation that I have is that she wanted to basically see if she could get away with it, like how far she could push and still get Mum behind her. I dont know if thats remotely correct, its just a guess based on whats happening.

In all this I "borrowed" money from my sister as I was unable to afford to go see her every day and pay for everything she wanted etc. I was having time off unpaid to come to her aid urgently so my income was lower. I was struggling to make ends meet and for me to continue doing what she wanted I had no other choice but to "borrow" the money to keep up. In all honesty I dont think I should have any responcibility for this, it was her desire that I kept coming down as often as I was. So I felt forced to "borrow" the money to do as she had asked. This continued when I ceased work and was waiting for SCI, I felt like I had no choice but to do that, that no one else was standing up to provide the support my sister needed. I borrowed money from Dad during this time, to pay for my daily expenses but also to continue being their for my sister. Being there for my sister was expensive, simply paying for fuel costs was really high. Again I felt like I had no choice, I felt like I was trapt having to care for my sister, I had been the one to be dealing with her medical teams at each hospital, I knew the history. I also understand mental health issues and am best suited between Dad and I to help my sister. Had I not needed to take time off work to look after my sister and try and minimise the impact this was having on my mental health, had I not been in a position where she wanted me to be coming down every day, then I would not have been spending the additional money that I was and I would be recieving my normal income which at the time I had been managing to live on. If things had not gone the way they did, it is unlikely my mental health would have deteriorated as it has and I would not still be trying to stabalise it. Had my mental health been stable, the effect of the significant pain I have been experiencing may have been more managable. There is a possability that I may have needed to step back from work regardless in this capacity, but I may have been able to manage to work and deal with the pain as well. I dont know, however my personal situation would be very different more importantly my financial position would be significantly better. I have a great deal of medical costs, some of which I would likely have needed to borrow the money to pay for. However, I have now had a substantial amount of debt for something I felt compelled to do and I also felt was the right thing to do, to leave my sister in hospital, in the mental state she was, alone with Dad and I visiting occassionally after work was insufficient and wasnt fair, it wasnt the right thing to do. Dad was unable to or unwilling to stop work and spend his days attending to my sister, Mum was unable to do so and would have been a poor choice to be in that position given what my sister was saying, therefore it was left to me. I dont resent that, I dont think that I should also wear the full financial burden of this.

Given what Mum has said in response to Dads questions based on what my sister has stated she has said and done, what she has said in general. Additionally given that my sister has sought out Mum to be best friends again, that she has tried to pick up like nothing has happened over the past I dont know how long. If my Mum has been as abusive, horrible, etc as my sister claimed having any kind of relationship with Mum would be the furthest thing from my sisters mind. She would do everything she could to minimise her contact with Mum, she would try to protect herself, not put herself in harms way. Given all I have given up, the health and financial issues I have incurred, I am really hurt. My sister has been told what she needs to provide me for me to apply for a grant to cover her debt, I offered this even though it may prevent me having access to this in the future. Again, I dont really agree that its a debt that I should pay, it was her demand that I came down. She has chosen to not do this, given the time frame its unlikely an application will be accepted. I did say in this instance I wouldnt pay, now she is trying to transfer that debt to Mum. Im incredibly mad that my sister is playing this game. I honestly dont know what to think about what either Mum or my sister is saying about what has happened between them, which my sister claims is the reason behind all this. I dont know what to believe, I dont know what to think about it all. Given the way my sister is interacting with Mum now I am forced to come to the conclusion what Mum has said is the truth and my sister is telling stories, why I dont know. But I am really hurt, I fell really used and abused by my sister. To spend months trying to comfort her, to minimise the self harm, deal with her medical teams, to listen and listen to what seems to be stories about Mum and what she had said and done. Seriously to give up and get into the positon I am mentally and financially and it appears that so much of it was fabricated. She has upturned my life and put me in a position of trying to stabalise my mental health which may take a long time. Then the financial aspect, I may have to see if I can access my super or I am in a position where I am going to be repaying that debt for a very long time. All for what may very well be a load of bull shit, at least in part. I dunno, the back stuff would have happened one way or another, how I handled it may have been different I dont know. But I really feel that I got shafted in all this. I dont feel like she has had much in the way of consequences, I mean she keeps buying all sorts of stuff. I really dont feel that I am appreciated for what I did, I feel there is more emphasis on how much it cost her. There isnt any acknoledgement of what I gave up, the mental health issues it caused or the financial implications for me, just her. She is more upset and annoyed that once she got home from hospital I took a step back for my own well being. There was a hostility for sometime from her because of this. She couldnt appreciate that after the amount of time I had spent going back and forward to hospitals etc. had, had a significant impact on my wellbeing, on my mental health. If I had to do this again, I would make some major changes, changes that she wouldnt like. Going forward if something similar was to occur I wouldnt handle it the same way at all. I would protect myself a lot more, I wouldnt allow myself to be put in a position where my finacial position was so affected or my mental health. My work would be far more prioritised as would my day to day life and personal well being. I wouldnt put my life completely on hold to care for her knowing that there is a good chance that what she is claiming may not be truthful.

I feel incredibly unwell tonight, I tried to get some sleep earlier but the spasms were really intense again. Im starting to injure my neck and right shoulder with the intensity of the spasms. This means I cant sleep, I can only hope when I take my night meds that will change. Im really tired, all I want to do is sleep. I have very little tolerance for anything at the moment, though I am doing my best to keep my mouth shut. My head hurts, its like its floating, my brain feels like its encased in gel or something, just not really working properly. I ache so bad, my joints feel like they are locking up. My stomach is so sore and feels so bloated. My pants feel like they are cutting into me.

I think the pain has actually gone, like I havent noticed my back hurt at all today. I noticed that I didnt feel any pain earlier today, but I was just sitting with Mum, in a chair that normally aggrivates things after a while and I have very little discomfort. I dont think its totally gone but its just about all gone. I think very soon it will be all dealt with, I think the procedure may have actually worked. When I start to reduce the pain medication Ill get more of an indication. That said the spasms are still full on.

Mum and I had a talk, quite a lengthy talk. It does sound like Mum is coming around regarding my sister. Also might be realising why I have such resentment for my sister at the moment. I did tell her about my sister trying to get into my SANE messages, she wasnt impressed. I think very soon my sister might just be finding herself in a world of shit.

Its been a while since I wrote about how I feel, probably a couple hours. I dont want to carry on, but its just getting worse. My stomach is so incredibly sore, it feels like someone has stuck an airhose up my arse and blown me up, well beyond what I can handle. Its so full that the contents of my stomach wants to just flow out of my mouth. The headache is getting worse, so is the ache, particularly in my joints. I feel so weak, so tired. I want to sleep but at the moment I know Ill just be prevented by the spasms. I dont know why but my sister keeps going on about what Im going to have for tea and then offering me food to try, the idea of eating makes me want to hurl. Im struggling to get fluid down let alone food. That said the acid has been better today, though I have been keeping up with iced coffee. I think if it gets much worse Ill have to take myself to the ER. I dont get the results of the xrays and blood tests until Friday, being really honest Im not sure Im going to make it until then. I feel unbelievably horrible.

I really dont understand why my sister feels the need to ask me what I am going to have for tea. She did again tonight and I said probably nothing, the idea of eating isnt something high on my list of things to do. She just asked, if she had asked. I mean WTF, why, as a rule I eat lite n easy, sometimes I stray from that but not often. But I almost always deal with my tea myself, without hers or anyone elses assistance. Each morning, I go into town to get smokes and drinks. If my sister is up, I let her know I will be back, generally saying Ill be 20 minutes. Every damn time she asks where I am going, other than she should know by now why should I say where I am going. At my age, also having lived out of home for more than a decade, I should be able to go out as I wish, giving only an approximate time frame for their comfort, that should be enough. I dont see why she needs to know what Im eating each night. I dont understand why she has to be so damn nosy and involved in my affairs.

I havent wanted to access my super to pay back my debt, but I dont feel I am in a position this time where I have any choice. Im going to attempt to do so. Ive emailed my manager to see if they can provide the details for our super fund so I can contact them and get the ball rolling. That does mean when I go bankrupt Dad wont be involved.

My sister has taken a considerable amount of money out of my Mums account without warning or permission, like $6k or $7k claiming Mum owed that money. She has told my Dad that over the past 9 months or so he owed her $33k. They now dont have the money for a new car, holidays etc. They also dont have the money to help me, the money to help support the costs of me looking after my sister. I honestly dont know if the amount my sister is claiming is owed is correct or not, no evidence is ever provided, like at most you would get a hand written list, not receipts. When I calculated what I had borrowed from my sister I came up with $2200 or so. My sister then says I borrowed her card, that I had her card for a while, I dont remember doing that, I dont know why I would do that and that accounts for another $2k or so. But then I asked Mum how much she had told her I owed and it had risen to $6k or $8k. In my instance she is trying to get it through my employers grant system and she will have to prove beyondd a shadow of a doubt that the money was used to support her etc. That said she has to put together evidence and provide that to me and it has to be accepted. Which it wont be now. More and more Im sure she is making shit up and taking what she can.

Talking about what has happened with my sister etc. not only have I gone into significant debt but I have had a significant reduction in my income. I have suffered greatly in my mental health due to my sisters situation and how I was required to support her so significantly, I am still trying to recover from this. You can tack on the spinal stuff but things probably would have gone differently had I not been off work already. So not only has she caused me to be in a lot of debt, but I have far less money to live on, to pay all my medical costs etc.