Malens Babble

I got a few hours sleep, Im having a coffee and going back to bed to see if I can get some more sleep. My back is really sore and my head is still going pretty intensily. I dunno, I feel like they had an opportunity to step up and provide support, I get financial support is going to be hard for them, they dont have much money, my sister has taken from them a lot of money as well, so financially they are not in much of a position to help. But its the support for my mental health, they could I dont know, just support me, talking to me about what Im experiencing, understand what Im going through, I dunno, just be there for me. I feel like I walk around with a massive weight tied around my neck weighing me down, it would be nice if I had someone lifting that weight with me. If I were my sister Mum would be organising a crane to help.

The challenges I face, the conditions I have, the pain, the sickness, the messed up mind, everything, I deal with primarily on my own. Im left to deal with most things on my own, financially Dad has helped me with loans but thats about the only help I get and even that is now not possible with what my sister has pulled. Mum is being difficult about smokes but I have little choice, I am addicted and Im stressed beyond belief, I dont know what else to do, if I could stop I would. Ever since I was moved back in with the rest of them I have just felt like an imposition. As if my presence at home with the three of them was out of line, unwanted and just an interference. The lack of support that I get just reinforces that.

I slept for a few more hours and woke up with no one home. I went down to Mums room to get a couple smokes but she hadnt left any for me. My sister had left hers behind so I nicked one of hers. Im in a lot of pain, a real lot of pain, my back is really bad today and I have no idea why. I dont know what to do about it, Im really lost. The pain is so bad that Im shaking. Ive tried to help more at home, thats the only thing I can think of that might be causing it.

I feel like I am being punished for everything I did to help my sister. Mum has lent my sister money, despite my sister taking money from Mums account without telling her. Still Mum has an issue with me taking some smokes and buying her a couple packets when Im paid. Still, Mum has let my sister get away with taking the money from her account, shes lent money to her on top of that, she cant just help me out with some smokes without asking for them back. Again, my sister getting favouritism, she seriously can do no wrong and everyone is just supposed to pick up the pieces for her.

I can gaurentee that I wont do the same again for my sister again in the future. Its not like she was in hospital for a few days or a week. She was there for 5.5months, thats a little different to a normal hospitalisation. You know Ive been in hospital for a month and that was a lot on everyone, but nearly 6 months is huge. The impact on me has been massive, financially, mentally, emotionally and its just not recognised.

Im feeling very lost today, the pain is incredible, Im shaking, I spasming, Im overwhelmed with depression and anxiety, I really feel like I dont matter to anyone, no matter what what I say and explain it is not appreciated how much I am losing financially, I mean 25% of my income is lost, thats a huge amount. Especially after spending everything I have and then some to attend to my sister. Its as if I should just be able to swivle and adapt. I should have the resources behind me to compensate for my losses, like I should miraciously always have this magic stash of money behind me. I dont know how, I have spent the most 10+ years trying to repay the money I owe Mum and Dad so I dont know where they expect the money for a stash to be saved behind me is to come from.

I think there is still an element of blame by my Mum especially but also my Dad, financially I have struggled for years, while I was out of home it was tight but I managed, when I moved back home, with all the debt it was hard. It was made harder with a lot of leave due to pain and illness. There was and continues to be issues with me having the time off, Mum was particularly vocal about her disapproval of me having the time off. I suffered for 22 years with undiagnosed lumbar facet joint dysfunction, it cause me a lot of pain, somehow I managed to get through life as well as I did but everytime I had time off due to the pain there was an issue. It has never been appreciated or respected at home the level of pain that I am in, it has always been assumed that I am in less pain or that I should be able to deal with the pain far better than I do. Its the same with being sick. Ive spoken about it before as a more recent thing, but its been going on as far back as I can remember. My family has this understanding that I am pathetic, that I am in exaggerating the pain, the discomfort and how sick I am, anytime that I am less than in good health they try to minimise or dismiss it. My sister is the worst for it though Mum isnt far behind. It doesnt matter what it is thats wrong, its not. No matter what the doctors say, what I say, the medication Im on, its never as bad as anyone says, Im always overreacting. The one I love is that I have a low pain threshold, regardless of the fact the whole pain threshold thing is bullshit, if my pain threshold is indeed low, then Im still not managing the pain Im not going to somehow magically have an increase in my pain threshold because you pointed out mine is low. Its a load of crap, its a bullshit justification to say that while my sister is in far more pain than she lets on Im in far less pain than I show, its gone on for decades. So me taking time off because Im not well, for whatever reason, isnt really acceptable and I only have myself to blame for the reduced income.

Its something I have come to accept that no matter what happens financially for me is my own fault, I dont work enough, I dont push through pain and sickness enough, I waste money. There is no understanding or appreciation of the financial position that my mental health put me in, that I have a lot of medical conditions that require procedures, some regularly, that I have a mountain of medications. My medical situation is really not taken into consideration when it comes to my financial position. I again, should have this mystical stash of money behind me to deal with these situations. If I had a stash of money behind me then I would have given it to Mum and Dad to reduce my debt. I have no hobbies, I have essentially no friends, I live at home, my medical costs eat up a hell of alot of my income. My failing is I smoke heavily.

My back is really doing my head in, its not just the pain, its what its doing to me mentally. I thought I was improving, I thought I could handle helping Dad with at least the kitchen but here I am in pain, spasming and shaking. Ive been tempted even to take my one remaining breakthrough pain medication. Its got me really depressed, I feel like I have failed somehow, I feel like I have misled people into thinking I was better than I am, I feel like no matter what I do I cant stop the pain permanantly, I cant even reduce it and have a life that allows me to help even a little. It not even one step forward, 2 steps back, its back to the begining. Im tired, Im sick of the pain, the restrictions, the spasms, the doctors, the procedures and most of all Im sick of being misunderstood. Why cant my family understand and appreciate how much pain Im in, how it is affecting me mentally, Mum was nice enough to have a pack of smokes bought for me, but again its something I have to pay back. My sister takes what she wants and effectively gets away with it, thousands of dollars. Shes the reason Im in the situation Im in, she has forced my hand financially to make some major decisions because I cant survive otherwise. My parents however cant buy me a few packs of smokes and not expect anything in return, they cant help me outright so that Im not behind next pay. I dont see how I am going to get in front, though I can put in my Tax Return and that will help. I want to run away and leave my mind and body behind.

I went and laid down for a while, I just needed break. My stomach is really uncomfortable, I had something to eat a little while ago, not much but now I feel lousy. Im still dealing with the whole OIC thing, so it might be that too. Its actually becoming pretty painful. TMI WARNING I have growth on my scrotum, like the skin. It was checked a few months ago and they thought it was just a boil type thing, nothing to worry about. But its grown, changed shape and its rock hard, so Im going to have to go get it looked at again. Just another thing I have to follow up on.

Dad lost a part of my coffee making stuff for the alternative brewing sometime ago. You cant just buy the part, you have to buy the whole new thing. Mum was on about it today because she wants the coffee, she likes it. Im over it, Mum ruined it for me a long time ago. So when Dad stuffed the Areopress I wasnt about to buy a new one etc. I was happy, no more making coffee for Mum, no more rubbing all that in like salt into an open wound. I should give a little more background, I got right into alternative brewing, I really enjoyed it, it was really soothing. Mum found that she liked it too and made me make her coffees despite me making it clear it was a problem. There was a difference in making a coffee for me, patiently going through each step, it became a mindfullness practice for me. Making it on command for Mum and taking it down to her etc ruined that. I lost my enjoyment and passion for it. She was on about getting it fixed today and I explained that we would need a new one. Now, she knows Im not interested in any of it, it would wholly be for her and maybe Dad. So why, with my limited resources, get it fixed, or buy a new one? I dont want to make her coffee, I dont want anything to do with any of it. I dont understand why she would think that for me it would be a good idea. It would be for her, she can buy one and the stuff and make them herself.

See its shit like that that really gets under my skin, she knows Im broke so how am I affording anything like that. She knows that she destroyed making alternative coffee for me, I made it very clear that she was ruining it for me while I was doing it, to the point that I lost the taste for the coffee altogether, why would I want to revive that. She doesnt care about my financial position nor how I feel, after all this time she still doesnt get how and why she ruined the coffee thing for me. With all my mental health issues, if I say that this is causing me a problem, why wouldnt you just accept it and let me be. There is so much lip service from Mum, from all of them, when I confront Mum on things about my health etc she nods and seemingly accepts what Im saying and then turns around and by her actions proves that she doesnt accept whats been said and is going to push forward with what she wants.

As I said Im in a lot of pain today, it feel like I have a steel rod up my arse, walking is really difficult its a bit of a good shuffle. I saw Mum again when I had a shower and it was like nothing was wrong with me. She didnt ask how I was, if she could help, anything. Earlier on in the day she again suggested that use a heat bag. I dont know what she thinks a heat bag will do for facet joint dysfunction, a spinal issue, not muscular. When she says stuff like that it just emphasises that she doesnt care enough to know what is actually wrong. I walked down from getting dressed and my sister askes what have you done, I said I dont know and that the only thing thats changed is helping with the kitchen. Again, Im still recovering from a procedure on my spine, I have a reasonably major issue with my spine. Its only been a month since the procedure and Im trying to help out already, mainly because my sister wont help. No one has offered to help me with anything. If my sister was in this situation everyone would be expected to run around after her.

I really dont know what to do, the pain is really bad, almost enough for me to consider getting my sister to take me to hospital or taking an extra dose of pain killers. I really just want to run away, Im so sick of the pain and the spasms. I was going so well, the pain was managable, I mean I wasnt pain free but I could deal with it. Now I feel like Im back to the begining, that I will never actually be free from this pain. Its not something my family understands or event wants to understand. They have never talked about how my pain actually impacts me, how it affects me mentally. The only discussion that has ever been had is how I need to get over it basically, how its not that bad etc. I dont expect if the pain continues in the following days that there will be any discussion between me and any of them how this change in circumstances might affect me.

I spoke to my parents last night as I said, today Mum is barely speaking to me and Dad seems like he is in a shit. Neither are really talking to me and neither have brought up what we spoke about. Dad has been outside since early today, I havent seen him for hours. He came in and said has anyone fed the dogs. I cant, I can barely deal with myself which he knows, he knows Im in a lot of pain, he is also aware I wont feed the dogs anymore, I have made my position on that completely clear. My sister on the other hand claims that she didnt know they hadnt been fed, which is rediculous, even I knew they hadnt been feed and I had been in bed for a while.

My spasms are getting really bad, my left leg muscles all tense really tightly, it hurts when it does that. Its getting really hard to control the spasms and the pain. Im really not happy, Im really miserable. This is tearing me apart, my sister is sitting across from me and she isnt even acknowleging what Im dealing with. She asked me to put on the kettle before, I was making up my Movicol, I said that the kettle would need water. She said thanks, like what wrong with you doing it. She is still of the opinion that its not as bad as I say, so why cant I do the kettle for her.

Ive given in and taken some more pain killers, I think it was the last of what I have. I hope it helps, I doubt it will help with the spasms though. I know Im harping on about this today, but its pretty overwhelming. Im so sick of the pain, I think Im more sick of the fact that no one in my family seems to give a shit. Like no one even thinks to help, Im left to deal with my issues myself. No one thinks to talk to me and make sure Im ok, that I might not be dealing with this well.

Im receiving SCI payments, its like income protection. While attending to my sisters needs when she was hospitalised my mental health degraded significantly. Work encouraged me that in light of the time off I was needing to attend to my sister, with little or no warning and my health that I go on extended sick leave which I did. It was good too, my sister needed me and my mental health got really bad. My sister is home now and Ive taken a big step back on that front. Im still trying to get my mental health under control again and I have been dealing with my spinal issues, multiple procedures, medication changes etc. When I went onto SCI they work out your income based on the income you were receiving leading up to your time off. As I was leaving work quite often to help my sister my income was quite a bit lower, then SCI pays 80% of that income as your payments, my payments are $1000 a month less than my normal pay about a 25% reduction in income. Payments are made month to month, for me on the 27th of the month. Prior to being on SCI I received my wage on a fortnightly basis. So Ive taken a massive hit to my income and now I get paid less frequently.

If my sister hadnt gotten sick, I likely wouldnt have gotten sick and therefore wouldnt have gone onto SCI meaning my income would have remained as it was. Not only would I be receiving a normal income, I would not have this debt crap with my sister and I wouldnt owe Dad the money I do now, I mean maybe Id owe him some of the money for procedures but the bulk of it I wouldnt.

Along with the reduction in income, I have had an increase in medical needs, I mean my next procedure is my 8th procedure for the year. I am starting with psychologist and psychiatrist along with my other specialist. My medication has reduced recently however I do expect them to increase when I start seeing the psychiatrist. I am fortunate that my medication costs have reduced as I reached my safety limit. Im only a few hundred away from my medicare safety limit which will help with doctors etc.

Im completely broke, I ran out of money a few days ago. I dont get paid for another 6 days. I put everything on the line for my sister. Not just for her but for my parents, Mum couldnt look after her and neither could Dad. For all his babble Dad doesnt understand mental health, nor does he want to, he would have made things far worse if he left work and looked after my sister, not to mention she didnt want him. For all his babble I wasnt healthy enough to return to work, nor would my doctor allow me to go back to work.

Not long after my sister came home from hospital the expectation that I would go back to work began, Dad had to actually explain to my Mum and sister more than once that I could not go back to work as I could not get medical clearance to do so. No one cared why, it was just that I had to go back to work. My sister was out of hospital and thats what mattered. I had served my purpose, my needs didnt matter, my health didnt matter. Im now having financial difficulties and that doesnt really matter either. On every front I have been left out to dry. My sister shows no appreciation for what I did, neither does my parents. Even with me having the financial difficulties that I am, it is more important that I help my sister get paid the grant for what the money I used to help her. I talked about this with my parents last night and Im expected yet again to go and fight for my sister because she hasnt provided what I need for the grant. But helping me, coming to my aid after all I did for the family, Ive gotten Mum winging that Im smoking her smokes and they bought me a packet today.

I was feeling like I was a failure before I wrote that but I feel like Im just not given an opportunity to actually succeed, as much as possible my hands are tied behind my back. Anytime I am helped its a loan, Im always expected to repay everything I get. Yes they have helped me but its always at a cost. My sister however fails to repay a loan to help her pay the deposit on a house and steals money from them and they basically write that off, she cant afford to repay it now, though she now has a brand new car, all the hand bags and crap she wants. Even after taking money from my Mums account, Mum still lends her money, though helping me would be completely out of the question.

I feel like less of a failure now, I feel like I dunno. I dont really feel like I have much reason to live, the idea of leaving home keeps me going, if my sister gets the grant that kinda kills that, I feel like I dont matter, I feel like Im worthless, unloved, unwanted. My family is only interested in making sure my sister is ok, turning a blind eye to the things she does, the lies she tells, the money she has stolen, the money she has just taken. Even this whole thing with Mum abusing her etc is flimsy. But she is still more important than me, she still has more value to my parents than me, she is cared for more than me. Im never going to succeed, Im never going to do enough, be good enough, sacrifice enough for my family

Im going to go to bed in a minute, Ive had the extra pain medication, which has helped. I was after some ice cream but all I could find was vanilla. My sister said there was some gay times in the freezer in the kitchen, down the bottom. She left it to me to get, despite my issues at the moment, by the time I found it I wished I hadnt I was so damn sore, I had to stand against the counter for a while to recover, Im still in pain.

I had extra pain meds a few hours ago, typically I dont eat much, 1/2 a lite n easy meal a day is a big day. Ive eaten so much more than that today and thats been since the extra pain meds. Though typically I eat late in the day and thats it.

Ive woken up in a hell of a lot of pain again, walking is really painful, it doesnt matter what I do it is painful. Spasms are happening a fair bit as well. Im going to try and get some more sleep in a bit. My sister has asked for her pain medication, she is in pain as well, as is Mum. They both take the same pain medication. Its one of the things I dont understand, they know about chronic pain but they deny mine. The pain killer they take from what I can tell is stong but not as strong as what I am on. They also take it as needed, where as I take mine every 12 hours regardless of how I feel, I can guarentee that if I dont take my pain meds I wont last long before Im in agony. Even with my pain medication Im in a lot of pain. I dont deny my Mum's or my sisters pain, I would suggest that the pain is different to mine though. Im seem to be much more heavily restricted by my pain, Im much more dependant on my pain medication to manage day to day. I give my sister her pain medication as Im in charge of her medications, she doesnt use a huge amount of her pain medications. I dont really like the idea of comparing pain experiences, however I cant help it in the circumstances of my Mum and my sister. Mum needs a simiar procedure to what I have had, it would eliminate the pain she experiences. She has needed it for years, she has had it before and it worked. She takes a strong pain relief, she gets it in bulk from one doctor, no other doctor she has been to will prescribe it at all. What she is prescribed lasts her weeks, but its the same as 10 days for me. The medication I am on is the same as hers but in a much higher dose and combines another medication to help prevent some of the side affects. However, all she needs to do is make an appointment and have the procedure and her pain would be managable again. If I knew thats all I needed to do, nothing would hold me back from making that happen. I know this, because I have taken every opportunity to have similar procedures that show promise in resolving my pain, however thus far without success. If she was in the pain that she claims she is in she wouldnt let anything get in the way of the procedure, though from what I understand its not continous pain, it comes and goes, it changes in intensity.

My sister is in chronic pain, she has a spinal stimulator but this is insufficient to manage her pain in its entirity. She has residual nerve pain from treatment of compartment syndrome in both her legs. I have no doubt that she is in pain, she takes a strong pain killer but its not a regular thing, like she doesnt take them each day at given times. Its as needed, I look after her medication and from what I can tell its not that common. Yes the medication she takes is strong, but its by no means a daily thing. Its not to diminish her experience, she has to deal with pain and that is difficult.

My pain is different to both, Im taking really strong pain medication twice a day, everyday and Im still in pain. Not only am I in pain, but I spasm. Ive had multiple procedures, each making my pain and spasms worse, needing my pain medication to be increased. Ive been in pain for 22 years. Im diagnosed with a range of conditions in my spine, some treatable some I will have to live with for life. The procedures I am having are to treat the pain for the joint dysfunctions by burning the nerve branches in the joints. So far this hasnt work. My pain is ever present, it doesnt leave. There may be fluctuations, but its always there. It is very limiting, I do everything I can to minimise the pain, to avoid increasing the pain, to find treatment for the pain. The best I have at the moment is the pain medication and when needed I cant take additional pain medication when the pain worsens, though at the moment I dont have much of that left.

I get both my sister and Mum are in pain however just based on the pain medication taken and frequency they need to understand that my pain is much more significant than theirs. They have to appreciate that I also have spasms and along with the pain, I am faced with significant limitations. My pain is continual and constant, ever present, they seemingly get holidays from theirs. What I experience and what they experience are two different experiences but they cant seem to realise this. While I try not to diminish or dismiss their pain, I accept that they are in pain and at times it is hard for them to deal with it. However, they do dismiss and diminish my pain. They look upon my pain, how my body reacts to pain and my mood as pathetic, the treat me as if I dont have the right to be in and express the pain Im in, that I am not in the pain I say I am. They act as if I am lying about how bad it is and therefore how limited I am.

Being in serious and constant pain is hard to deal with, its depressing, it makes me miserable, it causes difficulties with SI, its isolating. When your family, the people you're supposed to be able to rely on, the people who are supposed to support you no matter what, when they dismiss and diminish your experience it makes it all so much worse, the isolation felt is so much worse. Even your family leaves you to experience the pain alone, even more so to deny the pain exists or is as bad as you say, to be called a liar simply for being in pain. This causes a flow on affect to the other areas, depression, miserable, SI and of course the feeling of isolation.

With the way my family reacts to my mental and physical health conditions I feel very isolated, I feel like I am dealing with these conditions completely on my own and dealing with the affects they have on my life by myself, worse still I feel like my family poke and prod at the wounds of my conditions. My sister experiences a range of mental and physical health conditions as well, however there is a big difference in how the family approachs her conditions. She receives all the support that can be given, Mum is always there for my sister, regardless of what she has done to her. My sister has claimed that my Mum has been abusive, put her life at risk, that she said some quite horrible things to my sister, she has claimed that her support people have said if she doesnt move out of home within 12 months she will no longer be here. So much so that she has got priority 1 housing meaning as soon as possible she will get a house before anyone else. I was the one, not Dad, that first brought this up with my Mum. My sister had out of the blue become friendly with Mum again, treating her like nothing had happened. Treating her like she had not said all these things about Mum to all these people, even when directly questioned she deflected trying to put the emphasis on what Dad and I said, even though a great deal of what we had said was based off what my sister had said Mum had done or in agreement of what she was saying. For instance, my sister had said that my Mum was sending her out to pick up stuff from buy swap sell which turned out to be a lie, it was the other way around. My sister had the password to Mums bank account and withdrew something like $7k without telling Mum and without telling her why, what it was for. Despite all these things and more my Mum still has my sisters back, my sister has my Mums complete support. Even to the extent that my Mum has lent my sister money after she stole money from her.

Im down $1000 a month due to helping my sister and I am left to struggle on my own. They help with a loan but thats it. Much of what my sisters has stolen, the money lent for the deposit on her house, etc. they dont expect her to repay as she has spent it and cant afford to repay it. Its always money lent to me, my sister its different. My Mum would take her away a lot, she would buy things for her, she would give her money. No matter how bad I actually am, my sister is or has been worse and deserves more help and support. No matter what she does or says, Mum always finds a justification for my sister doing it, though even the smallest thing is held against me forever, my Mum has always favoured my sister, after a terrible event in my sisters life this turned from favoured to basically neglecting me. Mum does essentially nothing to support me and my conditions, she occassionally will buy me a milk drink I like but thats about it. As Ive said before she has an issue with sharing smokes with me, though will lend my sister money after she has stolen money from her. I dont know if Mum only has the ability to support one of us, if she just doesnt like me, I was a suprise when they found out Mum was pregnant, while my sister was planned, maybe its that, maybe I was more unwanted than she would like to admit, maybe Ive done something that they simply cant forgive. Mum has said that I have been violent in the past, some of the examples I remember differently, I remember her as the instigator and me defending myself and her claiming I attacked her. Many examples I dont have any recollection of at all, like not a thing. I can only put these examples down to some sort of Bipolar rage event where I have blacked out. She may be holding this against me, which I can understand, but at the same time I dont believe this is justified as it can only be due to a mental health condition and I was not in control of my actions.

In short the support provided to my sister is much better than what is provided to me. She, even after saying quite horrible lies about my Mum is supported, protected and rescued constantly. Mum ensures that Dad falls in line, I have in the past but less so now days. When it comes to me, I am left to deal with things predominately on my own, at best I can hope for is a loan and Dad to do my chores when I cant. Outside that, I have nothing, I cant even speak openly with my parents, which has been proven with the latest discussion. Again this basically turned out to be about ensuring that my sister can make the appication for the grant and has the best chance at receiving it, even though she has left it too late. Mum and Dad did nothing to address the financial strain caring for my sister has put on me. Nor was anything said or discussed about the way my sister is interacting with me, the "loan" being a main topic, which Mum turned around to me having to create the application and push for its acceptance. Not accepting that my sister has failed to do as I told her she needed too and has missed out on being able to apply for the grant.

I went back to bed and got some more sleep, Ive woken up still in a lot of pain. Im miserable, Im so tired of being in pain, like this amount of pain, its not fair. Dad is really exhusted, but still pushing ahead, he seems pretty grouchy. Its almost as if he is annoyed with me for not being able to help. My spasms are really bad today, Ive got no control over them, almost no control over my left leg.

I went and had a shower, lately when I do Mum and I have a bit of a chat, for the last couple days, since I spoke to Mum and Dad about my position concerning my sister, she has shut me down everytime I try to talk to her. Either this is a coincidence or she is not happy with what I said and therefore me. I would say the latter, during my conversation she made sure she protected my sisters financial welfare, while no consideration was given to mine. Despite all my sister has said and done, everything I have done, Mum is taking my sisters side yet again and hanging me out to dry.

Seriously its fn unbelievable, I spoke to Dad tonight and organised to borrow $300, Ill pay him back when I get paid in a dew days. Im going to do my tax shortly which will get me a bit sorted for a while. Dad was ok with that. I needed smokes and some drinks, Im in shitloads of pain and Im having spasms primarily on my left side but as I say I have pretty much no support. I knew if I wanted to get this stuff, I was on my own. Im not in a position pain wise at all to deal with the pain and not having smokes at the moment, I really had no choice. So, I summoned all my strength and started getting organised to go, my sister sings out can you get me a Coke, I said maybe, probably not. Then she asked how can you drive? I just said it was my other leg. At no point did she even consider offering to drive me. I didnt expect Dad would or could, he has been exhusted and unwell all day. The question how can you drive, is more a pointed dig, you say you're in all this pain, now you are going to drive, you cant be in the pain you're claiming. Again, its this effort to minimise and dismiss the pain Im in. Regardless of the pain Im in, I often have to do things for myself that cause me to be in even more pain, a lot more pain, if I want them to be done at all because I cant ask nor can I rely on anyone else to go out their way to do these things for me. Anyhow, I went, I didnt get the Coke, by the time I got to the servo I was ready to call Dad and get him and my sister to come and rescue me, I was in an incredible amount of pain. I drove home regardless, got home and unpacked the car, then sat down for a while before putting the drinks in the fridge. While I was out my sister had a shower and shortly after I got home she left. So, she could well have taken me in, she could have helped me, she could have shown me a tiny bit of support. I mean she could have taken it a bit further and just gone in and got what I needed.

Its this kinda thing that bugs me, questioning the ligitamacy of my pain, trying to discredit what I say I feel. I dont understand why she feels the need to do so, I dont understand why purpose it serves. I dont know if she feels intimidated, like if I am in the amount of pain I say I am in then she wont get the sympathy, the attention or something she thinks she deserves. Maybe its easier to treat me poorly, allows them to feel ok about treating me like shit, to believe that I am faking the pain, faking the mental health conditions and the other conditons I suffer from. Maybe if I am being untruthful in this area, Im untruthful in others, if Im untruthful in others then as a person, then by not helping around the house, doing activies, missing work, Im just lazy. It also means that when I act out of character, when I have mood swings, emotional outbursts etc. I have some kind of attitude problem that needs correcting rather than a medical condtion that needs treatment or to be allowed to run its course. Denying, dismissing and deminishing my mental health conditions means that they dont have to acknowledge the affect they have on me. They can ignore my anxiety prevents me from doing certain things, instead I am again lazy, unhelpful, arrogant or just an arsehole. If my depression doesnt exist then Im just in a bad mood and that can be tolerated for only so long before someone must correct me. Even if its just minimising my conditions, it allows them to have a improper attitude towards them, it allows them to place the bias upon me and incorrectly label my actions and then treat me incorrectly in relation to my action.

My conditions are not excuses, they are reasons, they are diagnosed conditions which have confirmed symptoms. The conditions affect me in a number of ways, even with treatment I am still affected by the symptoms of my conditions and likely always will be. Its not a choice, if it were a choice then I wouldnt require treatment. If I were able to control my symptoms, if I were able to stop the pain by sheer will power, if I could turn off the anxiety by just thinking it, I wouldnt need medication, psychiatrist, psychologist and/or a councillor. If it were a matter of will power, a matter of making a decision then whole medical fields would never have existed. There are non-medication treatments for some things, but the majority of things require medication to treat, in my circumstances anyhow. Currently, I would say that I have been pulled off too many medications and I am not being appropriately treated medication wise. I dont have a psychiatrist at the moment, I need additional medication for my mental health, this is affecting my mood, outlook and interactions. This is something my family simply doesnt understand. My treatments or lack of them have thier own symptoms, their own side affects. The pain medication I take can cause OIC, some of my medications cause dry mouth, some cause my legs to swell so I have to take others to counteract this. Most side affects are managable and have little interferrance in my life. Some have meant that I cant do different things after certain times. Some cause me to be rather drowsy, making me less useful once Ive taken them. Even if I take the medication, even if I practice the non-medication treatments diligently, they are not cures, they are not going to mean that I am no longer affected at all by my conditions. Without ruling it out altogether, regardless of the treatment it will never completely resolve the issues.

I do the best I can to minimise how my conditions manifest, how they affect me and those around me. I live with my Mum, Dad and sister, yet I feel completely alone. The way they deal with me, the way they treat me and my conditions I dont think is helpful. They generally ignore my conditions and me, typically they seem to think that if they dont acknowledge any of my conditions, my concerns, my problems then they dont exist, therefore for the most part they make me feel like I dont exist, that I have no worth. When my conditions interfer with them, with what they want me to do, how they think I should act, then they acknowledge them and it is generally in a negative light. For instance my anxiety prevents me going into town after 11am/midday which means I cant go into McDonalds to get my sister a Coke after that time, this is forever a problem. Rather than accepting my limitation, it is an issue everytime. Rather than accepting things, my sister continues to ask. My pain is treated as if I am making it up, I get questioned on its ligitamacy, I should be able to do small things through out the day. Regardless of my conditions and how they are surfacing on any given day, Im expected to go to work. Expected to do my chores. Expected to participate as needed. Expected not to show that they are effecting my emotionally or mentally. I rarely manage to meet these expectations, Ill meet some most of the time but not all.

I struggle with my relationship with my conditions, generally speaking I see them as interfering with a normal life. I am contunally juggling between them as to their importance, which one needs my attention most at any given time. Even at home I cant let my guard down completely, I have to try and maintain my emotional state at all times, it is inappropriate for me to show any emotional reaction be it to the way Im treated or to my own experiences. Dealing with my conditions continually is very taxing and sometimes it becomes completely overwhelming, which can cause me to have an emotional reaction, this is rarely accepted, normally at some point there is some form of intervention where it is made clear my "attitude" is not acceptable. I spend great deal of time dealing with my conditions medically, attending appointments and getting treatments, then there is dealing with the conditions on a daily basis. Utilising different techniques, will power and distraction methods I try and manage the worst of the symptoms, all that takes a great deal of energy, its tiring and it wears me out. Dealing with allthe conditions, the medical aspects, the home management, it leaves little left for a real life. Even sleeping has its challenging, dealing with spasms, tossing and turning. I dont really see my conditions as being part of me, they are like symbants, they are part of me but they also they are not, they're a distinct entity seperate to myself but also completely integrated into me, if that makes sense. So when I talk about my pain, its something that I can sorta hold in my hands, its almost a physical, a tangical thing. It makes me feel like I can distinguish me pain from the rest of me and I can address it as such. It doesnt always work but it helps generally speaking.

The pain is increasingly getting worse, as is the spasms. I tried to have a lay down for a while, almost immediately I started to spasm, particularly in my lumbar area, which just exhaserbated my pain, I lasted about 10 minutes. Ever since my spasms have been worse, I am having really bad spasms in my left leg, my left shoulder keeps spasming, my lower back too and my neck. My sister has not made a single comment, she is sitting across from me, Im moaning uncontrollably at times and there isnt a single comment asking if Im ok. I get that she has asked in the past and she probably knows that there is little she can do, but it would be nice to know that she cares.

Im pretty stuck on the pain thing at the moment, Im sorry, but I cant understate how much pain Im in. My lumbar is incredibly painful, but the areas where I am spasming are also really sore. Mentally Im really stuggling, I feel really lost, like Im staggering around in a thick forest. I feel like I was finally making some progress and thats been ripped from under me. I feel like its been a dream and Ive woken to reality, a reality where I am in so much pain etc. like this is some cruel joke. Im miserable because Im in pain, Im miserable because Im spasming, Im miserable because its not supposed to be like this, Im miserable because it is. Im miserable because no one in my family seems to give a shit, hell my Mum even pointed out that my sister is getting sick. I hate my life. I dont know how much longer I can cope being in pain, how much longer I can cope with my spasms. Im so angry, angry at the world, angry that no one can just resolve my pain. My pain specialist said he could resolve it but all that has happened is that I have gotten into more pain. I have no choice but to continue with him, but I have spent so much money to become worse off. Im not great at expressing my emotions, I dont cry, I rarely speak about how I feel, though Im not exactly given the chance. I just want it to be over, what ever shape that takes. I just want to stop being in pain, to stop spasming. I want more for my life than being trapt in a body overcome by pain and spasms. I get close to that dream and I it is just ripped away from me. I am incredibly sad, so depressed, I am overcome by misery and I have no idea how to deal with it anymore. I have no plans, Im safe, Im just completely lost.

Ive taken my night meds. I have no sleeping pattern at the moment, I can wake up at 9am, 1pm or even 4pm, which means, while as much as I try, I struggle to maintain a regular medication routine. At the moment its 1am/pm which is really difficult to keep to. I keep trying to bring the time down to a more reasonable time, ideally 8am/pm. I was hoping that one of the medications thats in there would make me a little sleepy and allow me to have a chance at having a rest. It took a while but I think it has kicked in a bit, along with just being damn tired. Even it it doesnt allow me to have a rest or if Im lucky sleep, it has reduced the number and intensity of spasms Im having, at least while upright.

I slept for a couple of hours, I woke up before my alarm went off. Im still in a crap load of pain and the spasms started staight away. Im finding it hard to keep my eyes open, but I need to call the cliic and beg to see my GP about my pain medication, Im also hoping the pain specialist calls. Im really hoping that I can see my GP today, Its really important that I see her, worst case scenario I see the other GP I see. I really need to address my pain with one of them, either increase my pain medication, add break through medication or both. It would be great if they could do something about the spasms as well, they are driving me up the wall. I got through to the clinic, My GP and my back up arent working today. They have organised an appointment for tomorrow at 5:45pm with my normal GP. Im gonna hang about for a while and see if my pain specialist rings. Once he has Im going to go to ER again but this time my focus will be on getting something more for the pain. I got an email from my Pain Specialist, I have a telehealth appointment at 2:30pm with him tomorrow.

I've made my way to ER again. They're going to give me the same injection as the other night and some breakthrough pain medication. I dont know if they are going to give me some extra breakthrough pain medication to last until I see my GP. The doctor I have is a bit of a jerk, he has really crap bed side manner. If he helps with the pain it doesn't matter much though. My GP is also on today, I wish I got her but she's probably not meant to treat me.

I wish they would hurry up and give me some pain relief. He just said they will get it soon. He doesn't care when I get it. He has such a shit deamener. Once Ive had the medication I have to stick about an hour. No idea why, maybe because I'm having the two medications together.

The injection kinda sucks, I have no problems with needles but the stuff stings a bit going in. I've seriously had enough of pain and the spasms, but the pain especially. You know I had a bit of a break where it wasn't so bad, but that was short lived. I just want it to be over. I'm so tired of being in pain.

My pain has reduced as has the spasms. I want to go home and go to bed while I can. In 10-15 min I'll check with doc if I can go. Also see if he will do script for more pain meds. I can go, just waiting on script, hes a little busy at the moment. Just hurry the fk up I wanna go home. I'm tired I need some sleep.

Seriously, my sister is one of a kind. She sent me a txt as I was finally getting to my car asking how I was going. I said drugs, going to chemist and home to bed. I then get a message asking me to get her a chocolate milk. I sent a message back saying No. I get a message back saying Thanks. That is a dig from my sister. I sent a message back saying that she has seen how difficult and painful it is to walk. I was doing what I have to do. That I had picked up my stuff on the way in this morning, if she had told me before then I would have gotten it. I also pointed out that she was going to be right next door to a supermarket.

She seemed so understanding and that she appreciated the pain I am in last night, then I get this. I know she is sick, but Im not asking her to do stuff for me, I dont have an expectation that anyone do anything for me, not even take me to the ER. Even if she is sick, its still a lot easier for her to walk into the supermarket and get her drink than it is for me. Additionally, Ive just walked out of the ER, Ive had an injection of steriods and been given more strong pain medication and a script for more. When I went in there I was a solid 8 pushing 9, when I left I was a solid 7 pushing 8, so the reduction in pain was minimal, but there has been a decent reduction in spasms.

It will be interesting to see how things go when she gets home and Im up. Be interesting if Mum has anything to say. There is no reason she cant get her own like I did mine. I wish she would just leave me be, like dont put any additional expectations on me other than what I already have. I really have enough to deal with, the amazing pain and spasms are by far sufficient to deal with without additional assistance.

I went and laid down but by the time I did the injection had worn off and I had started spasming again, the spasms are getting worse, particularly in my left shoulder. The pain relief that they gave be has actually helped, but not a huge amount, enough that I am not about to break down but not enough that Im able to deal with the pain well. Id really like to get some sleep, if I shut my eyes I start to doze, but I spasm or something happens that will stop me from sleeping. Im going to have a shower in a moment, I doubt its going to help my back but it will be nice.

I spoke to my pain specialist he is leaving things as is for another month. He doesnt think the spasms are related to the pain. If Im still having issues in a month its likely I will have the procedure again. Im seeing my GP tomorrow, Im going to talk to her about the spasms, there has to be something they can do to calm them down and allow me to sleep. Im also going to talk about increasing the pain medication again, I dont want to, Im on a really high dose now but its either that or Im taking breakthrough medication so there isnt much difference.

Friggin my sister has been dozing at the table. She woke up and said to me, you've been here the whole time. I was like why? She said that the dogs had eaten her slippers. There is a damn table in the way of me seeing the slippers, I dont know why she would blame me.

I went and laid down, despite the spasms I managed to fall asleep for 2 or 3 hours. Ive woken up in so much pain, breathing is not even pleasent.I know I live with others and I have to respect what they want to do as well, but I really want to put on Netflix and try and distract myself from the pain but my sister has videos going on her phone so I cant. In a little while Ill go take some more pain medication and hopefully that willl help. Im reallly hoping that my GP can help tomorrow, Im tempted, as much as I am not a fan of the high strength pain medication, but Im tempted to jump up past 40/20 to the next higher dose. I dont know, I really just want the pain to be gone. It is impossible to explain how much pain Im in, the kind of pain Im in. Its not like any other pain that I can relate it to, that I have experienced anyhow.

I dont know what Ive done to tick my sister off now. I know I said no to the chocolate milk but seriously, if thats why then she really needs to take a closer look at what Im going through, the pain Im actually in. She went in to get Carls Jnr and didnt bother offering me any, not the first time, wont be the last. She hasnt said a word to me, though I havent said anything to her. She has a chest infection, so she isnt well, you got to give her a break for that. Now she has fallen asleep at the table, she really needs to go to bed and get some real sleep.

The last lot of breakthrough pain medication has finally kicked in. Im still in shit loads of pain, walking is still really painful, Im still limited to really small steps/shuffling. I stay seated as long as I can, I keep putting things off so I have a couple things to do when I get up next to go to the toilet. The best I can relate it to is as if there were a massive set of needle nose pliers are pinching my spine in the middle of the lumbar area, occassionally twisting causing shooting pains. In addition to this there is pointed steel rod rammed up my spine, every step I take this rod seems to be reinserted and jammed into my spine. Then there is the continous crushing pain, like I am stuck under massive steel pilons. Its all centred around the one spot in my lumbar area, but the pain radiates out from there through my whole lower back. When it gets really bad, I get pain like Ive been hit by a really large mallet in the middle of the thorasic, the pain wraps around to my chest.

On top of the pain is the spasms, when laying down the spasms affect both sides, when upright its mainly the left side. My legs spasm, sometimes though they tense up rock hard, even twisting in. My lumbar spasms, thrusting forward with a lot of force. My shoulders spasm, thrusting backwards. They also just get pushed back by an invisable force and held there, back well beyond what is comfortable. Every now and then, they spasm really badly and cause my shoulder and therefore arm to flail about. My neck spasms causing my head to be thrown from side to side. The intensity of the spasms varies, they can be incredibly intense and they can occur in succession rapidly. My left shoulder has been hurt by the spasms, it really hurts and each time it spasms it causes it to hurt even more. The same goes for my neck.

Im going to lay down for a while, I dont think ill sleep but I might get a little bit of a break from being upright. You have no idea how tiresome it is. I laid down for about an hour and a half, the pain is a fair bit better and the spasms have reduced. I dozed on and off in bed but didnt actually fall asleep. I might get lucky and fall asleep after Ive had my night meds. Im really tired but having a lay down has helped with the pain etc. I am pretty dizzy/wonky though, Im not eating much so I wonder if that is what is causing it.

When I was walking up the hallway to go lay down, I say walking, its tiny shuffling steps, Dad asked to me to take one of our dogs down to Mum. He sleeps with her. That means not only that I have further to walk but I have to go up and down a couple of steps. I really dont understand what was going through his mind. Why, he would ask me to walk further, go up and down steps. Im barely moving, Im very clearly in a huge amount of pain, maybe you take the stupid dog.

Its as if I get a few days, sometimes a couple weeks grace. During this time I am allowed to be sick, be in pain, etc. Once that is over then I should be better or dealing with it. The exception to this, is if my sister gets sick, she gets sick then anyone else who isnt well better get over it. My sister is sick, despite needing to go to ER twice, I should be ok with the pain and spasms.

Its 1:30am. My sister has gone to bed. Im thinking of doing the same shortly. I had my night meds a little while ago, along with the pain killers, the combination will likely make me a little more sleepy than normal, I hope anyhow, so I might get more than a couple hours sleep. I took some OTC pain relief as well, Im hoping it will help with the screaming headache I have. The neck spasms and jarring is causing me to have regular headaches, really intense headaches.

Ive got my GP at 5:45pm today (it's 1:30am), obviously we are discussing pain and spasms. Im so eager to see her, so far everyone has avoided dealing with the spasms. Treating them has to be done cautiously with the medication Im already on. They may just decide to give me something to make me sleep, the spasms prevent sleep so they might just address that, as that might be safer. Id like it if they could do something for the spasms in general, they are incredibly frustrating and painful. As I said they stop me sleeping, in general it just interfers with my day.

Pain wise, I suspect that she will increase my pain medication however I am already on quite a high dose so they may be hesitant to do so.

Im eagar to see her because there is a good chance that by doing so I will get some relief. She will prescribe medication that will reduce or eliminate the pain/spasms and allow me to have a better quality of life. By doing so I might not feel so depressed and miserable

I got a couple hours sleep begore Im up again. Im in pain, waking up in pain each day is a real struggle. Im going to lay down again, I need to go into town im not going sure if I should sleep first. I went into town got what I needed, I kinda perked up a bit. But Im still going to lay down in a little while.

Pain wise Im not as bad as I have been when Im just sitting, I have my moments, walking hurts like hell still, the spasms have calmed down a bit. My neck is really sore today. Im incredibly tired though. I havent had a great deal of sleep lately.

I went back to bed and slept really well, quite solidly and for quite a few hours. I slept well past my medication time so I feel pretty dizzy/wonky and not terribly well. Despite the amount of sleep Ive had Im really tired. Im incredibly frustrated by the pain, the spasms, the impact on my life. Im worried that my GP wont do much about things, that because of my medications that Im already on she wont want to prescribe much else. Being left to spasm like I am would be so unfair, I cant understand why they cant at least try muscle relaxants, anything to give me a break. If she gives me a prescription Ill have to to the chemist in town rather than the one I normally go to. There is a fair walk to the chemist in town, which is going to suck in a big way and take for freaking ever at the speed Im moving. My hair is a mess, but its too much effort to sort it out, it really needs a cut but I cant see myself being able to sit down long enough to have one. Im driving myself in to the doctors, like every other time Ive needed to go to town Ive been taking myself. I wonder how this influences what the doctors decide. Like I cant be in as much pain, the spasms cant be so bad if I can drive, but I dont really feel like I have any choice but to take myself. I dont expect others to do things for me, on occasion they do but they are all sick too so it's not terribly simple. Even before they were all sick I was more or less left to deal with things myself unless it was really desperate.

I've made it to the clinic, now I'm just waiting on my GP. The spasms have stepped it up a fair bit as has the pain. It didn't enjoy the car ride so I really hope it's worthwhile. I'm incredibly frustrated, I can't just sit still, I'm constantly jerking and carrying on. I sit and it seems to stop and then it's like its built up and I get hit hard. Im so freaking tired. I dont feel like I've actually had any rest for ages.

I'm incredibly depressed, I'm so sad. I dont really know how to express how I feel, its not something I do well, I havent really been permitted to express feelings like this.

I saw my GP basically the Ive topped out on pain relief, she gave me some breakthrough pain relief, but I dont have much. Taking any more pain medication wont do much if anything. She has recommended a specialist physio and massage therapy for the spasms. We also talked about changing pain specialists, we are going to see how things progress over the next month, if I have a repeat procedure then I might allow a bit more time. When I started with the pain specialist I was in pain but I only needed pain relief on occassion, I mean it wasnt great, I was pretty limited in what I could do, I had a fair bit of time off work but since starting with the specialist I have become increasingly more and more painful not better as expected. The reason for starting with him was due to NDIS, they said there was more I can do, turns out that is to be worse off.

I really feel like I would have been far better off if they had just decided to put me on a low dose of the pain medication Im on now, it would have managed my pain, it might not have "fixed" it but I would have been able to work with less time off and maybe do more in general. But no, we had to try for more, at the time it sounded so promising but had I known I would end up like I am I would have dealt with what I had. The pain I was in was serious, it did impact my daily life, but it was nothing like what Im experiencing now. The prospect of dealing with this for another month, probably longer just makes me so miserable. I really hope physio and message therapy helps.

The GP and I spoke about how I was feeling a bit. I said that my depression was bad and that I was miserable. She asked about my SI and I said that its been on and off but I have been writing on here about it which has been helping me manage it. Its really bad after speaking to my GP. The outcome of the appointment was not what I was hoping for, it might be seen as an easy way out etc, but I was really hoping for increased pain medication and medication to deal with the spasms. I really didnt care what, just medication that stopped/reduced the pain and the spasms but thats not what happened. I am so sick of the pain and spasms, Im so sick of trying to make my life better and it just turning to shit each time.

I am doing my best to avoid thinking about SI, having my thoughts centre on this topic. However, Im stuck with it on my mind so often. It plays on my mind almost constantly at the moment. I think I have a little bit of hope left, I guess there is a chance in a month they will repeat the procedure and that will work. Its slim but maybe thats whats keeping me going. I do feel like I am hanging off a ledge holding on by my finger tips.

The spasms are incredibly frustrating, not to mention painful. Continously having your body move abruptly, without warning. Muscles tensing really hard. Both pushing body parts out of place, often for sometime. Sometimes I get periods of time where there is few spasms or light spasms, then I have quite a large spasm, which just knocks me down a peg. Its difficult, its so frustrating, not being able to sit still, not being able rest. I cant just sit and write and watch Netflix, Im abruptly moving and sudden sharp pains hit me irregularly. Its worse when I lay down, both sides of my body spasm, its more intense, more violent, more rapid. The only break I get is if I do fall asleep but typically I wake because of a spasm, sometimes its just pain though.

Work got back to me about my sister putting in an application for the grant, I explained the whole situation but they arent interested in her application anymore. She has obviously left it too long. I told Dad and he took it well, basically she left it too long nothing can be done. I told Mum and she was upset, she asked me if I explained the situation and of course I said yes. She was not happy about it. I told her about my situation with my back and spasms, I barely got acknowledged, she was far more focused on the fact my sister will be out a few grand because that is far more important than the amount of pain Im in, the spasms and the pain they cause. FFS my sister took money from my Mum, she may have taken money from both of them and she is worried about my sister getting more money. Shes not at all worried about my financial position, helping me get back on track. More hurtful, she is not worried about the amount of pain Im in, the spasms Im having. In fact she seemed to be mad with me, I got out of the shower and sat down like I have been and couldnt pry a word out of her. Ever since I spoke to Mum and Dad about my sister a few days ago she has hardly spoken to me. If it continues Im going to say something, we were talking daily prior to that.

Mum's attitude towards me in general but especially in relation to my medical conditions really doesnt help me emotionally, particularly in relation to my SI. I suppose its the whole families, but your Mum is supposed to be who you go to to be comforted. I dont feel comforted by my Mum at all, generally I feel disliked, unwanted, that I dont matter. I mean really, how would you feel when you have been to ER twice in a matter of days, your specialist says live with it for a month, your doctor cant do a huge amount, and she cant even acknowledge the pain your in, I dunno just asking if Im ok. No one has questioned if I am doing ok emotionally, like if Im coping with the pain, if Im coping with the spasms. I dunno, I know she is sick, so is my sister, but it doesnt take much to show some sympathy.

My sleep is all over the shop, I get sleep where I can, if that means during the day then I sleep during the day, if at night then at night. But it has really messed up my medication routine. Currently Im taking my morning medication at night and my night medication in the morning, Im going to bring my night medication forward a couple hours tonight. Depending on when I wake up, I aim to do the same tomorrow morning.

The spasms, mainly my neck and shoulders have been causing headaches, now Im getting weird feelings up my neck into my head, kinda like pins and needles but not.

Seriously the pain is overwhelming, from the waist up I am in pain. It doesnt stop, it just varies in intesity. Spasms sporadically come and cause acute pain, its not just pulling muscles, but it seems to do something to my spine. I put off walking, even going to the toilet, I hold on as long as I can, walking is so damn painful. The pain that goes up my spine with every step is difficult to deal with. I cant take large steps, the more weight I put on each step the more painful they are. Ive got to try and get into one of these physios or the message therapy really soon. Its my only hope to reduce the spasms. If I cant do that soon, if I cant reduce the pain soon, I dont know what Im going to do. Its a month before there is a decision on redoing the procedure, then I have to wait for an opening, then there is another 6-8 weeks recovery. If I have to deal with this level of pain for that long I dont know what I will do, I dont think I will be able to manage. I have got a psychologist and councillor and I will rely on them, I think suicide prevention discussions will be common. I have actually been thinking about reaching out to a suicide prevention organisation in the near future if I am unable to pull myself together. I cant seem to make my family understand how much pain Im in, so I dont feel like I can talk to any of them about how I feel. That said I have brought up this subject before and got no where. Given what has happened with my sister and she is still dealing with suicide Im trying to avoid adding another person with the same issue. I think, I know that anything I do in this regard I will have to do without my families knowledge. I keep flip flopping between giving up and fighting.

Eating is still a fair issue, I tried to have some tea and really didnt get through very much and now I feel pretty horrible, like I ate 5kg of sand and that was an hour and a half ago.

Ive taken my night meds and some pain killers, Im going to go to bed shortly. I need to be up to make appointments tomorrow. I tried for an hour to sleep but between pain, spasms and being itchy (from the increase in pain killers), I couldnt get comfortable, I couldnt lay still long enough to fall asleep. My nose is a bit blocked as well, which didnt help the cause. For most people it wouldnt have been a big deal but blocked/runny nose does not go well with CPAP mask

My depression keeps getting really bad and I get overwhelming urge for chocolate etc. The other day I gave in and got my sister to me a couple of blocks, which didnt last long. I have a strong urge for a chocolate thickshake today, I might get some chips as well.

I got a thick shake, it was so average. I went to bed when I got home. I got like an hour and a halfs sleep. Im playing with the idea of going back to bed and see if I can get some more sleep. Im tempted to stay up another 45 min to make appointments.

I was able to get an appointment this afternoon with an appropriate physio, which Im really happy with, its a chance Ill get some relief. I went in and got some meals as Im basically out of food, it was exceptionally painful. I felt really self-concious, I felt like everyone was watching me. It took ages but I got it done. I then drove to my chemist and got my medication, I sat down and there was a message from my sister asking me to go to the vape store. Other than being too late, there is no way I could have. I was in agony by the time I had finished at Coles, getting in and out of the car is so hard, it hurts so much, not to mention walking. Then I had to go to the chemist. Mum was annoyed that I didnt say anything about going into town, she wanted donuts. that would be a bit easier to deal with. I dont get these people, why would you look at me and how I am moving, you know the pain killers etc Im on and that they arent enough, you know Im waiting on physio etc. to help with spasms why would you be asking me to do anything for you. Not to mention how tired I am, I mean Im sitting waiting for my physio and I keep dosing off.

I saw the physio, he recons my nerves are all tight, he has given me some exercises to do and Ill see him weekly. I got home and my sister had sent a message asking me to go get a vape. Again, she wants me to go somewhere Ive never been, go through a store Ive never neen been in and look for a particular vape for her. I do understand that she's sick and I was in town, but she really needs to understand how much pain Im in. Im not playing, Im not overstating things, Im in a serious amount of pain, whatever her thoughts on the matter, it doesnt change the fact that Im in a crap ton of pain and my spasms arent overly helpful either. The tiny amount of sleep Im getting is making things worse too. Im planning on going to bed for a nap. Since seeing the physio my spasms, primarily the ones in the shoulder have been really bad. Im drowsy as anything, like Im falling asleep part way through writing.

I went to bed, as tired as I was I expected to get a decent sleep but I managed like 1.5/2hrs sleep again. I got out of bed, put my feet on the floor and pain rushed up my spine. Walking is exceptionally painful, maybe as painful as its been to do, but sitting down is ok, spasms arent too bad. Im still really tired, I had set my alarm for 11pm so I can have my medication.

My sister still seems mad that I didnt go get the vape for her, it was her second request, after the first one I made it clear that I couldnt do it but she pushed a second time. I just had a shower and confirmed this with Mum, my sister is mad that I didnt check my phone before I left town. That said I have told her in the past to ring. As I said to Mum even if I had checked the phone, I couldnt do it for her. Im in too much pain to go wandering around, through stores looking for stuff. My sister told Mum that she took me into town last night for a chocolate shake, I corrected Mum and said I took her. My sister is on about all the stuff she has done for me, I said to Mum that she isnt really doing anything for me. I go in everyday and get what I need myself.

My sister is really ticking me off, like I wanna say other words but I cant on here. Going on about me not doing stuff for her today when I clearly cant. Im barely able to move, let alone walk. I deal with my own stuff every day, I dont ask her to go out her way for me. I took her in last night, not the other way around as she tells Mum. At the moment, Im concentrating on doing what I need to do, thats it and thats all. I went into Coles today purely because I need to eat. My sister keeps asking if I should be driving, if I want to get the stuff I want, go to appointments, get food etc. I dont have a choice, the spasms are on the left side, as I drive an automatic that means its not a problem. But if she has concerns about me driving surely walking around stores for her is not ideal.

I just dont understand how my sister and to an extent the rest of my family, cant appreciate the pain Im in. Its clearly visable, they can see how hard it is for me to walk, the pain has to be written on my face. Then there is the spasms, they can see them easy enough, thats kinda in your face. Just, I dunno, leave me alone, let me deal with the pain as best I can and let me just get what I need to get. Inbetween just let me be, be kind and dont sit and judge what you dont freaking know.

Im really struggling with the pain in my neck, the spasms in my shoulders and neck are building up and causing a huge amount of pain. I keep moving my head about trying to crack my neck. Pain is running straight up my spine, Im going to lay down, it would be nice to sleep but I need to take some pressure off.

I managed to fall asleep but again only for 2 hours. When I got out of bed I really struggled to move to move, to walk, it was incredidibly painful but it was like all my muscles had become rigid. I dont know what it is but it does seem that the most painful period of the day is just after I wake up and try walking.

its 2:30am and Im really tired, Im pretty sleepy. I havent had anything for tea as yet so I think Ill have tea and go back to bed. I finally got around to making tea at 3:15am. Walking is incredibly difficult still, even trying to sit down is amazingly hard, my legs just dont want to move properly or at all. I managed bugger all of my tea.

I managed another couple hours sleep, I cant seem to manage more than 2 hours at a time. Its really frustrating. Im finding it hard to stay awake when Im not in bed. I doze on and off.

My sisters attitude regarding my situation is really starting to wear thin, its really not fair. Im in agony, no matter how much pain medication I eat Im in agony. Walking is a horrendous event. Ive lost control over my body. Im exhusted but I cant sleep. I can barely manage to eat anything. I get no support from my family. Thats one thing, but the attitude, the trying to get me to do stuff on top of my essential things. I mean, I have to eat so I go and get food, but I dont need to go get stuff for other people, its too painful, its too difficult.

I went back to bed and got a few more hours sleep. Im going to head into the servo in a little bit, when I wake up properly. Though I could end up back in bed. Im really stuggling with staying awake. Yeh Im going back to bed after a smoke, I fell asleep at the table briefly but the sudden jolt awake really hurts. After a little bit more sleep I dont feel so stiff, Im not having as much trouble walking, though the spasms are occuring pretty often.

The spasms are happening just about all the time, I have very little control over my body today. My shoulders are incredibly painful, other than spasms where possible Im using my arms to press against walls and counters to help me walk. Ive organised an appointment with a message therapist to see how that goes. I only did a 30min session to see how it goes, see how my body reacts. Im a little nervous that the message thing will cause my body to flare up, well flare up more.

I think Im going to have another lay down in a little bit, I feel like I need a break, pretty much from myself. I ache, Im sore and Im in pain all over.

Dad was on about the money when I woke up today. I know its important but you know just at the moment with my new issues and additional treatments I really didnt need to hear about it today. Anyhow hes got to do this and that but it looks like the repayments are going to be $200 a month, but that takes it to 2050 and Dad wants it done before then. So We are back at the thing of put all my money to them and not have any money behind me, Im not going to do that though. I dont want to be paying the loan until 2050 either but I have to start organising my money so that I have some savings and money behind me.

I laid down but I fell asleep, Im not sure how long for. I cant stand up straight this time though, Im so stiff its not funny. It will calm down shortly, it generally does. All Ive done today is nap, but I actually feel like Ive had some sleep. Ill probably keep napping over night I think, especially once Ive had my night meds.

I have almost no clean clothes and the clothes line is empty so Im gonna do a couple loads of washing.

Dad just came in and said that it looked like Mum has been asleep all day as if he was disappointed. I said that I basically had to but he made up some excuse for me. He has a real issue with Mum sleeping during the day. She has a few things wrong with her, her heart is buggered and she has fluid on the lungs and a aquired brain injury. She tends to sleep a fair a bit normally, but sometimes she sleeps through the day and often the night. Every now and then she does it for days at a time. Dad has a real issue with this, I dont totally understand why though. She doesnt come out of her room, at the moment with the fluid on her lungs she is doing even less than normal, she doesnt really get out of bed a huge amount. She doesnt do much in the way of house work or anything so I dont see why he is so worried about her sleeping all day. If she is that tired that she is going to sleep that much then whats the harm. To be honest it used to tick me off too, but I did come to the conclusion that it makes no difference so I let her sleep when she needs to without causing a stink.

Im sleeping weird hours, Im sleeping a couple hours at a time, sometimes at night sometimes during the day. Its basically when Im exhusted enough and when the spasms arent too bad. If I can sleep, I sleep. What that means is often Im asleep for a couple hours, awake for a couple and then back asleep. Or I dont sleep at all. It does make taking meds on a regular cycle difficult. So far Ive managed to maintain my appointments.

Ive started having dizzy spells, particularly when I try and get myself up, the rush of pain is fairly intense.

Im flip flopping emotionally today, I go from really depressed to managing. The pain is really bad today, I mean its really bad most days but you know Im getting dizzy I think from the pain. It gets me really down, really depressed. Then Im ok, I manage the depression from the pain, its not that it doesnt affect me, its that it doesnt impose on my life. Its like it isnt the central theme of my mind, which is pretty impressive because it feels so damn overwhelming. Ive been managing the pain a bit more by laying down regularly, that does mean I tend to fall asleep but it gives my back a break from the pressure of holding my spine up right. I can really feel this pressure at the moment. I didnt get a heap of breakthrough pain killers when I saw my GP, so I have to work out ways to minimise the pain and this seems to work. The spasms have been less intense when Im laying down today, which is making resting a heap easier.

I had a good rest, not very long though, I kept getting acid up my throat. I think I need to have something to eat. I tend to get acid if Im not eating enough/regularly enough. Given the very little Im eating Im getting a fair bit of acid regularly.

I know I complain a lot, unfortunately I dont have a hell of a lot of good things in my life. I have my job, I like my job, its the best way I have found to earn a living. The company I work for are really good to their staff, really understanding. They have programs set up to help them through tough times. Through our super we have salary continuance insurance so I get an income when Im in the position I am now. Along with that we have rehabilitation services provided if we want them. This is far better benefit than Ive had anywhere else Ive worked. The people I work with are awesome, all my Team Leaders and managers have been great too. Im well looked after when I am at work, we obviously have a job to do and we have expectations to meet however, they have made accomodations for me with my conditions over the years to allow me to work as well as possible as comfortably as possible. When I start returning to work I know they will be really supportive, Im expecting it to be a bit of a lengthy return to work, there is my back issues and mental health issues to take into consideration in the return so its going to be complicated. I am looking forward to returning to work though.

I went back to bed after my night meds, they knocked me about tonight, made me super drowsy, my sister kept saying I looked stoned. I got a fair number of hours sleep, I woke up a bit before 4am and Im pretty sure it was before midnight that I went to bed. Im in a fair bit of pain, my back is bad but so are my shoulders. Im fairly hungry, I think, I dont know what I want to eat though, I think Id like potatoe chips. As much pain as Im in I think Ill probably go get some. Thats been put on hold, I have been really drowsy, like falling asleep briefly. I had a smoke in my mouth and fell asleep and burnt my beard. Im really tired, obviously, but in heaps of pain so I didnt see that going back to bed would work. I might try going back to bed and see if I can sleep, despite the pain.

I fell back asleep for a few hours, I woke up still in a huge amount of pain. Im going to have some breakthrough pain medication shortly to see if it helps. I can only think that anything I can have can only help. The pain is quite intense in my lumbar today radiating to my shoulders and down my arms.

Im not really coping well today, the pain is really bad, spasms are ok, Im really tired, I cant seem to get enough sleep, I mean its 2 hrs at a time but its also time out from the pain, the spasms and the misery. The extra pain killers have helped with the pain, it doesnt help with the spasms or the depression though. The spasms hurt, but more so they are a fantastic reminder of the amount of pain Im in.

Suprise, Suprise I had a nap. Couple hours again. Woke up thinking about lamb, I have no idea why. Its not something I eat. Pain has settled somewhat, though I am still pretty tired and spasms are still strong. I paid for my cystoscopy today and organised to get my tax done on Monday. The return will be pretty handy at the moment.

Dad and I talked for a bit today he isnt happy. My sister has crap everywhere and he is sick of it. Last night he asked for some stuff to be moved so he could feed the dogs and there was an argument about that. Dads warned Mum that he is going to crack the shits. There is aquariums all over the kitchen benches, along with all my sisters other crap. There isnt any room to do anything in there, its a kitchen not a shed.

I went down to see Mum, shes not terribly happy. Shes still on about the stupid horse. We werent really talking when my sister came in, she asked if she was interupting and Mum said no. We weren't talking but just spending time together. My sister, as she does, just took over, there was no point me being there so I left. I had asked Mum how she was etc. but it wasnt resiprocated at all, there was no consideration that I might need to talk. Maybe I was sitting with her in hope that we would actually talk. Not once has she or anyone for that matter, has asked how I am, how I am dealing with the pain and spasms. I tell them how they are going but there is no talk about the mental aspect of what Im dealing with. When I sat with her today, I kinda hoped that it might be brought up but no and then my sister took over.

My arms are really sore, I couldnt work out why but its dawned on me, Im using my arms to lift myself up when I am getting up off the seat. I get that everyone has issues at the moment, it would be nice though if someone asked how I am, like how I really am. It would be nice if someone would think about how this might be affecting me mentally. I mean the pain and the spasms are one thing but there is a mental aspect to all this and Im not coping in any area. There isnt anything they can do for the physical issues but they could help when it comes to mental health. I could ring SANE or someone for support but I dont really want to reach out for support, I want someone to come to me and ask if Im ok.

FFS back to bed in a minute, Im starting to get dozy. Well Im not dozy anymore. I laid down and just spasmed, badly. Now Im just frustrated as hell. Im back watching Netflix, my sister asks to have control over more days of medication, its up to the doctors not me. So a bit of a grump which I didnt need.

Im overwhelmed by sadness, a sadness I cant shift. It doesnt leave me, I go to bed feeling incredibly sad, I wake up really sad and Im just sad through out the day, it doesnt stop. I dont cry, its not something I do. I generally make sure that Im portraying a happier person most the time. For the most part its easier. Its easier to pretend to be happy, to joke, than to expect or hope that someone, anyone is going to reach out to me and make sure Im ok. Im frustrated pretty much all the time, oh I get frustrated with the spasms and the pain, but there is an underlying frustration that is just there, the frustration that Im not worth any sympathy, any understanding. That I am just not worth making time for, real time. Im preoccupied with suicidal ideation. I most often dont see a point looking to the future, all I see is more pain, if its not physical, its mental. Theres spasms, though they may go away. I dont see my financial situation changing, Im always going to fight with my finances. My life is full of doctors, specialist, procedures, medications and allied health professionals. Why keep pushing forward, why keep going ahead with the fight. I often just want to give up. Im tired of the fight, Im tired of dealing with medical issues, tired of being treated but not cured. Never actually better, just managed. Spending nearly 1/2 my income to get a management plan. Man, even my bowel movements need a management plan now. All this leads me to think about options, its a hard thing to fight against, I always find some hope in something but I get worried that one day I wont find hope, one day it will just be overwhelmingly bleak. My sleep is all over the place, I was sleeping heaps, then not at all, now 2hrs on a few hours off but I think thats going to change again. No matter how much sleep I get Im still incredibly tired, I have no energy. I feel like Im walking through water all the time, like there is a massive drag to moving. Im not eating much at the moment, though I have days where I eat heaps. Im drinking a reasonable amount though. I know this is depression, Ive suffered from it off and on for years and years. So I know what it is but it doesnt stop it from being what it is.

This is the kinda stuff I want to talk to someone about, as much as I do try and pretend to be happy, I would think that my family would notice, they would see all the other stuff. So I feel like they are just ignoring it, that the best case scenerio, More likely is that they dont think Im worth the effort. Given the way they treat me, the way they make me feel like Im worthless, etc. this seems more likely to me.

My sister has started yet another project to do with aquariums this time. I dont know what shes really doing, I dont particularly care. Id like her to clean up from her last project and the freaking lounge. Actually, just clean her shit up in general, she has stuff all over the place, kitchen, dining room and lounge. Im so sick of it, I dont know why its so hard to put your shit away. We've basically lost the kitchen now because thats her work bench. Its 8:30pm and shes bashing something on the bench and cant understand why I dont want her doing it, apparently I had an attitude problem in telling her to stop.

Im really over that, if I tell my sister that she needs to stop something I have an attitude or Mum is told I was aggressive, I yelled, I was rude etc. Shes been caught out where Dad was in the room for both what was said and my sister repeating it to Mum and corrected her. It mattered once off but Mum cant see the pattern. Sometimes, I just dont want her to do things, like smash rocks at 8:30pm. While she might not care or see the issue, having the kitchen benches full of her projects, so much so you cant make a meal or prepare the dogs food, I dont want her doing that. The list goes on.

Im going to bed for a bit, I feel completely out it. I feel like there is so much pressure on me, like physically (emotionally as well). Im really tired. After a bit of sleep I got up again. I keep nodding off at the table, so I think Ill go back to bed shortly. Im kinda pekish, I wouldnt mind having something to eat but I dont have the energy to make anything. I think Ill have a smoke and go to bed.

With everything Im dealing and while I get life needs to continue, Dads on about money that I had borrowed, how he is organising it through his mortgage. They are on about the money owed to my sister, my sister was too late in her application for the grant, Mum is now questioning how this is resolved for my sister, one of the ways is to make me pay or they pay. I have made it clear Im not repaying what would have been paid by the grant. So if Mum pushes that it will be a fight, but in the end its a fight I will win, Im not giving her money for it and if they pay her the money Im not repaying them. There is a $2000 amount that Im supposed to owe, this is before the money from her time in hospital. I dont know about it so Dad has asked my sister for statements, which she isnt giving her. My sister bought me a bunch of clothes at a point where I had put on some weight. She has now decided that she is happy to pay for some of them but she didnt intend to pay for all of them. As Ive said to Mum and Dad I dont think its fair that she goes out on her own and buys me clothes, without my permission and then bills me for it. I was very clear with Mum, Im not paying for them at all. Dad has said that my sister is not to get anymore money from anyone until she provides the statements requested. Im not borrowing anything from my sister again, she is too happy to manipulate the figures. Im trying to avoid borrowing from Dad as well, with the tax return there is a good chance that Ill get ahead and wont need too any more.

I went into town to get some more drinks, got a burger as well while I was there. It was like 4:30am. I got home at 5am, I feel like crap now. Im having a drink and then going to bed. Im really tired again. It doesnt seem to take a hell of a lot, Im up for short periods before I need to sleep again. Its really frustrating, I just want to sleep 8hrs and be up for 16hrs or similar

Im in a lot of pain, it seems to be that Im in more pain after I wake up and Im in less pain the longer Im awake, which is weird. This time though, Ive just stayed in a lot of pain, it hasnt improved the longer Ive been awake. I hope that doesnt mean Ill be in more pain when I wake up next.

I went back to bed, I dont know how long for. Im really sore, I dont feel brilliant, Im still really tired, I ache so bad and there is so much pain. Im really not happy physically, I feel odd in the head. Once Ive had my morning meds Ill probably go back to bed. At some point today I need to go get some more meals, Im not looking forward to doing it, its a pretty painful experience.

I havent been up for long, but I feel like going back to bed, at the same time laying down isnt appealing, I dont think Im going to have much choice but to go back to bed though.

I went back to bed and slept for about 3 hours, I feel better in my head than I did in my head. Im in a fair bit of pain and Im still tired. I mainly got out of bed because I needed to pee and the quilt felt incredibly heavy. I have to go get my meals, but Im not at all keen on doing it, I know it will hurt.

I sit down alot, more now than I have in the past. The pain prevents me from being upright much, the more pain Im in the worse this has become. As a result I keep getting boils on the back of my thighs. I shower each day to help keep it to a minimim but I still get them alot, pretty much I have atleast 1 at anyone time. Its not exactly painful, not in comparison to my back, its a different kind of pain. But it certainly makes sitting more uncomfortable. Depending on where the boil is I can minimise the discomfort, to try and get the boil out the way, off the seat etc. but its pretty frustrating.

I went and got my meals, holy shit am I in pain. My sister got me to get some latte drink stuff and a Macca's Coke. Neither were huge deals but I do wish that she/the family would realise that by the time Im done with what I have planned Im pretty well knackered, Im in a lot of pain and really not up for doing more. Mum was on about asking her if she wanted something when I went to Coles. Im not going to, its too much to add to the shopping list she really doesnt get it. She wanted donuts from Wendy's, she said it wouldnt hurt, seriously how would she know, I tell you after walking around the shop and going through the check out, standing in line to be served at Wendy's is really the last thing I want to do and yes it will freaking hurt. Im only going into the shops because I need to eat, thats all, its a necessity. Having someone help me would be nice, they cant actually do it for me, I need to be there but help would be nice, at least be nice if it were offered. Not adding to what I have planned. My sister just asked what was wrong, really? How do these people not get it? How do they not understand how much pain Im in? That doing pretty much anything hurts like shit? Ive taken some breakthrough pain medication, hopefully that will help soon. Im going to lay down shortly, give my back a break.

I laid down for a while, I didnt really sleep, just dozed on and off, but I wasnt really tired when I went to bed. I feel a bit better now but a little light headed, I wonder if this has to do with the change in my breakthrough painkillers, they have gone from a tablet to a capsule. Next Im going to have a shower. I really need to get a hair cut but with the spasms Im worried that my head will spasm and tilt rapidly to the side and ram itself into the sizzors.

I went down and had a shower, I said hello to Mum as I came into her room. By the time I was out of the shower Mum had rolled over into bed. Pretty much every time I get out the shower I sit with her and spend a bit of time with her. Its been like pulling teeth lately, she hasnt seemed to want to talk or spend time with me. Her rolling over in bed like she did kinda confirms that she doesnt. I give up, seriously the amount of pain Im in, I can hardly walk this afternoon, Im shaking, my body is like jelly, but Im still willing to spend time with her, but she cant spend some time with me. I dont really bring up the whole pain thing when talking to her, its all about her and still she cant talk to me. It would be nice if she would spend some time talking to me about me, about my situation, but no she just rolls over and goes to bed. Im really sick of trying with all of them. I cant speak to my sister because she will twist and manipulate what I say and it will go to Mum as something kinda like what I said but not. Which hurts even more when its about the pain Im in, the emotions Im feeling. Dad is no good at this stuff, not at all and Mum wont, to the point that she rolls over into bed rather than wait up for 10 more minutes and have a chat.

I got to sit down and work out my budget, Ive got most the figures sorted for individual items, I just need to budget it. I did the individual things a few months ago with my last budget but nothing much has changed. I worked out I have to put $475 aside for medication and thats after all the reductions in medications, it must have been much higher than I thought. As much as I can write doing the budget stuff is a real challenge, I keep putting it off. I might do something about it after my next nap. I need to do something, I need to work out if I can afford life.

Im getting really tired again, it doesnt take long, its incredibly frustrating. I barely start to get going before I have to have a rest. Back to spasming and not being able to sleep. My shoulders are sore as hell after laying down this time. They didnt get thrust about so much as they have in the past more spasming deep within them. Eventhough I was spasming a bit laying down for a while helped, I feel a bit more awake, not too relaxed though.

I just looked at my budget, looking at the projected on and not even including electricity, gas or water I cant afford to move out. Id need to find a couple hundred dollars a month. If it werent for all the medical costs Id be capable, monthly medical costs are over $1000 a month, thats not taking into account the irregular specialist appointments Id need, like the pain specialist and urologist. It doesnt take into account things like physio or message therapy as Im having to have now. It doesnt take into account health insurance. The projected amount is a lot less than what I have been paying, as I had multiple procedures and specialist appointments. I dont know where things are going with my spine, I dont know how many more procedures Ill need until I am on maintenance procedures.

Its a bit of a bitter pill to swollow, that I cant afford to move out with my medical costs, even basic medical costs. I dont know what Im going to do. I dont know how Im going to cope living at home much longer, especially knowing that I dont have a way to escape. I was surviving on the belief that in about 6 months I would be able to move out. That idea is gone out the window and with it my only hope of survival. I really dont know what to do, I feel completely trapt.

Ive taken my night meds in hope that they will help me sleep soon. I know its not much of an escape but its a little escape from my pain, from the spasms and from the feeling of being trapt.