Malens Babble

I dont get it, it would appear my sister has taken thousands, tens of thousands of dollars, she has bought a heap of stuff, hand bags etc and a brand new car. Im not against her having a new car but she has done it at the expense of my parents, their retirement, etc. They wont consider making her sell her car to recoup some of the money she has spent, there is no requirement, no enforcement of making her take responcibility for her actions, instead they will take the loss. They will let her have a brand new car, all the money everything because they say there is nothing they can do, I mean make her sell the car and get a cheaper one. I on the other hand am expected to repay anything and everything I owe, no matter how long it takes. She really should be made to repay as much as she can.

Its nearly 1am and my sister has just decided to mention her medication, asking if Ill be up in the morning to give it to her. I got Dad to deal with it last night due to the pain I was in, so I said Dad has it. She would have known as he would have got them from her last night. But why you would leave it until 1 am, Im assuming that means she hasnt taken any night meds tonight, which isnt ideal. Her medication thing is really starting to tick me off.

Another few hours sleep, Ive woken up feeling pretty unwell, my back isnt showing me any love either. I went into town and did my morning stuff, it was like 3:30am but figured Id get it out the way. It might give me time to have a break and go into the shops and do some shopping tomorrow. Ill probably have a sleep shortly.

Ive been thinking about some stuff with my sister, Im going to have words with her about her asking me what Im having for tea, she needs to stop, it annoys me, its the same answer every night, I dont know. Just stop asking. The other thing that is going to have to stop is the continual asking where I am going, what Im doing etc. When she goes out she says Ill be back later or words to that effect and that is it, no one questions it further, shes made the point to Dad that there is no need to. I dont think there is a need to shes 41, she can work her shit out. But the same isnt afforded to me and thats going to change.

My stomach is really tight and upset, like Ive eaten way too much, way too quickly. Ive gone to the loo a couple times, hard as rocks. Im taking a laxitve but might have to change to a stronger one, if that doesnt Ill go to my fail proof one.

I went to sleep for a while, not long, certainly not long enough but Ive woken up and I can barely walk again, Im in pain not a huge amount though, so Im a bit suprised by the amount of difficulty Im having in walking. Im assuming its a nerve issue.

My sisters alarm is going off for ages, I managed to get myself up to her room and told her to turn it off, she said she couldnt she had dogs, I told her to work it out. I got asked whats your problem, seriously your alarm is just going and going and your excuse is you have dogs. I dont care about the dogs work it out, just deal with it. Be a grown up.

Im going to lay down again, Im hoping that Ill wake up feeling better than I did last time. I laid down for a couple hours Im pretty stiff and Im in a fair bit of pain. Im pretty frustrated, actually Im more than frustrated. I have a psychology appointment today, which I am looking forward too, Im hoping that she can help me manage my feelings towards my pain.

I went into town to get some drinks, I was in a heap of pain before I even got there, sharp pain just above my hips. I did what I needed, I got some fruit juices, something different and came home. Im in a wicked amount of pain now, I really want to go and lay down, I know if I lay down Ill have a sleep and I cant afford to do that, I have my psychology appointment in an hour an a half, so I have to stay awake for that. But I will definately be going to sleep after that.

I had my psychology appointment, it went well, she confirmed a lot of what Im doing with managing my pain are the right things, though she didnt have any ideas of additional things I could do to improve things. I dont really feel like there was much in the way of her giving me advise, I dont feel like I got much out of it.

I laid down for a while, it took a bit for me to get settle, I was having spasms and was just restless. But I did settle and got to sleep for a while. I woke up in a decent amount of pain, but I feel pretty out of it. Im not too sure why, I mean I understand why Im in pain but why I feel as out of it as I do I dont know why. Im in a good amount of pain, I have been in a fair bit all day but not like a massive amount, not in comparison to recent amounts but I am really struggling with it this afternoon. Just trying to deal with being in pain. Im over it, Im sick of being in pain. I think Im not far off going back to bed, more so to hide out than anything I think.

When I got up no one was around, my sister came down shortly after and immediately hammered me about if I had been to Woolies and if I had spent more than $30. I hadnt. Then it was on about getting the cards. I dont understand how she thinks that I would have any energy left, by the time I get to the check out I am basically just trying not to collasp, the last thing I care about is some stupid cards.

I just tried to lay down for a while, I couldnt get comfortable or settle this time. I ended up having spasms as well. I got overly frustrated and got out of bed. My left shoulder is really painful, I dont like moving it at all. When I went into the shops, I didnt go to the servo like I normally would beccause it was too much for me to handle, now Ive run out of iced coffee, I cant decide if I go in and get some more now, later or at all.

I wish my family, particularly my sister, could understand that Im not being lazy, that Im not trying to avoid doing stuff, etc. that I have to break activities down. With showering, I use a shower chair but the way I have to sit on the chair for the water to run down my back isnt terribly comfortable, so once Im out and dried I sit down and generally talk with Mum for a bit. Anytime I can break things down I will do so, but I havent worked a way to break down a shopping trip. By the time I get to a shop, the drive has taken a fair bit out of me. Typically, I just go to the servo on my side of town, it has most of what I need on a regular basis and it minimises the amount of walking I need to do. Then of course I have the drive home. There is no chance to rest. Change the servo to a supermarket and there is quite a bit more walking, I can use a trolly but with my shoulders the way they are it hurts to use a trolly. Adding to the list of things to do is not really an option, its not that Im lazy or I dont want to, I mean often I dont but I would normally. I just cant, I dont have the energy, it takes a lot out of you to fight through the pain to do less for longer. What I mean by that is walking is painful and harder to do, I move much, much slower so it takes heaps longer to do what I want to do, which means Im experiencing pain for longer and longer. The part they really dont get is that I keep doing it because its good for me to keep getting out, to keep doing the things I can for myself. Getting out is good for my mental health. Doing things for myself is good for my mental health as well, its good for my self confidence, self reliance. In general its just good for me to be out and doing what I can for myself. What doesnt help me is adding on to my trip in anyway, dont ask me to get things for you, nothing is small or minor, if Ive been doing what I plan to do, typically its all I can do that trip, so your little addition could just push me over the edge.

I went to bed and got some sleep. I woke up very rigid, moving was more painful than before. Eventhough Ive just had some sleep Im still really tired, Im always tired, but I mean the prominate, in your face tired. I think Ill be going back to bed shorty to see if I can get some more sleep.

I got some sleep, but still feel like a heap more. TMI I went to the loo and while I feel like I could go again Im glad it stopped when it did or I would have blocked the thing. I feel heaps better than I did. I feel like I lost heaps. Im going to have something to eat, I havent had tea or anything so its about time I had something. Then I think Ill go back to bed.

I went back to bed and slept for quite a few hours, I feel a hell of a lot better but my back is pretty damn painful. Ive got my GP this afternoon at 5:45pm I dare say Ill have another nap or two before then. Im thinking about going into coles to get some meals, Im in a fair bit of pain but I think Ill manage. I was wrong, that fn hurt a lot, Ive just got home and Im in heaps of pain. That has really knocked the wind out of my sails. By the time I got into coles I was in a lot of pain but I was there so perservered, I could hardly move by the time I got back to my car. I had to sit and recover for a moment before I drive home. Im going to have a lay down again. I got a couple hours sleep, Im in a lot less pain than I was. I am however extremely drozy, and keep falling asleep.

Here's the thing I think that is bothering me about my sister buying a brand new car, because my sister has taken the money that she has, done what shes done, Mum and Dad have effectively bought her that car. She is not expected to repay anything, she is basically getting away with everything. On the flip side I borrowed money when I was waiting for SCI which I have to repay. But the big one, Dad is buying me a car, he has a $5k budget that I will have to repay. They bought my sister a brand new $25k car which there is no need for her to repay but Im getting a $5k car that I have to repay. I know that they cant afford to give me like $25k, especially when they have given my sister more than $25k. It just doesnt seem terribly fair or right that she isnt having to pay anything while Im having to pay it back. Im not exactly disputing having to repay the debt, its that my sister isnt having to repay anything, like she cant afford the debt so they will waive the debt in full for her.

Today has been very much a wasted day, I went and got some meals and went to the doctors but for the most part I slept, if I wasnt sleeping I was dozing at the table. Pain has fluctuated through out the day. Ive had a number of pretty rough spots. Im finding going out increasingly difficult, by the time I get where Im going Im in a lot of pain, so by the time Im home Im in a huge amount of pain and I am incredibly tired.

As you may have noticed the amount I am writing has lessened, Im finding it increasing difficult. Its really are hard to concentrate for long periods of times. Its not just the lack of concentration, my world has become so small, things dont seem relevant or important in comparrison to the amount of pain Im in. The pain is just consuming my world, everything revolves around it, going out, where I go, how long for. Sleep/wake. It affects your mood, your reactions. There doesnt seem to be an aspect of my life that isnt almost controlled by the pain.

Something my psychologist and I talked about was getting my hair cut. I did so the other day and wound up in an incredible amount of pain. It really irritated me, something I perceived as so simple, so minor, would cause me so much pain. Its not the only example, where something that isnt hard, isnt a big deal has a significant affect on my pain and Im left feeling like I have failed, that Im weak, that Im just insufficient. So going to shopping, to appointments and the like, I have accepted will cause a fair bit of pain. Im gonna be driving, walking around etc. But sitting in a seat, how hard can it be, turns out not being able to move, having to sit very still, putting my head into different positions, these things cause issues with my back. But again its such a minor thing, its just a damn hair cut. There is so many things like that, so many things that I percieve as being minor that I just cant do, that it hurts way too much. It drives me nuts that such simple things would cause such major issues. You know I cant even feed the dogs or clean the kitchen, they are not big tasks, normally. But in my current condition they are out of reach, they are too difficult, too painful. Even adding getting a Coke for my sister, picking something up, etc. adds to what I am doing and it can be too much for me to do, it pushes me over the edge. It makes me question the purpose as to my existance, I mean I cant do shit, I cant help, I can barely look after myself, I spend as much time asleep as awake, I cant work, I scoff medication, whats the point. I dont mean that in a suicidal way, but there is purpose missing in my life. Its not even missing purpose, its a deficincy in anything that makes life worth living. Its just pain and managing pain, everything revolves around minimising the amount of pain Im in. If Im not managing pain Im managing mental health. Its not really much of a life.

I went into town like normal and to the chemist and by the time I got home I was in a fair bit of pain and really worn out, so I took my morning medication and went to bed. I got some sleep. Earlier in the day Dad had asked what I was doing today, I said that I might do some laundr9y. I woke up and he had started doing laundry himself. While I might not actually be up for it today, it would be nice if he left the washing machine free so if I were up for it I could do a couple of loads. But Ive gone to bed so he just assumes Im not doing washing, even though he has to be aware by now Im only in bed for an hour and a half to two hours and then up again. If he is inside and Ive gone to bed and wake up, almost every time I get a comment like, "look whose back" or something similar. Its always some statement about me having been asleep. He doesnt understand that Im sleeping for like a couple hours at a time and awake for a couple hours. He doesnt understand how drainging being awake is. Im not sleeping because I want to, Im in so much pain, its such an effort to do anything that I get worn out so easily. He doesnt get the whole pacing things, especially when it comes to sleep. Ive been trying to look after my own things, like I make my own tea, I do my own washing etc. but I think Im going to have to ask Dad to do my laundry for me, Ive really tried to avoid doing that, its a bit of a point of pride for me but I really dont have it in me, Im too tired, in too much pain. Ive taken extra pain relief today but Im still in a lot of pain. Ive been up for like an hour and Im pretty tempted to go back to bed as Im finding sitting really painful.

Just shopping wise there are so many things I want to do, that I want to get but they are not required. I only do what is neccessary pretty much, to do more is too much effort, its too taxing, too painful. Thats the case with so many things.

I spent much of last night asleep, I was only awake a couple hours. This morning I was up a little bit but Ive been asleep a great deal of this afternoon. Ive just woken up again at like 4:30pm but Im ready to go back to bed already. Im in a fair bit of pain today but I think its more that Im really tired of fighting, worn out from being in pain, sick of the constant micro managing everything I do to limit and avoid pain. And thats just the pain, there are so many other things Im dealing with along with the pain. Mental health is a big one, its being significantly influenced by my pain. As the pain increases so do my hallucinations, which is hard. Im dealing with an exceptional amount of pain and in addition Im seeing and/or hearing things. While what Im seeing and hearing isnt overly disturbing, its very frustrating. My depression is also getting increasingly worse. Managing SI is very difficult, it can last for extended periods of time, days and weeks, managing the feelings associated etc to remain on the ok side of things takes a lot of work.

Another lay down. Ive woken up with really sore arms as well as my back. I think Im going to have a shower shortly, it sounds like a huge amount of effort though so I will see if I can get the motivation. I forced myself to go have a shower, I wanted to say hi to Mum anyhow, I try to do that everyday as well as have a shower. When I get depressed showering and selfcare is an issue, so I am pushing myself to keep up with that. When I went down to shower Mum started to say something and I was standing for a minute or two and my legs went to jelly, it took all I had to get myself close enough to the chair and drop into it. It hurt a fair bit falling into it like I did but I had no option. Mum has transferred me $250, which I really appreciate. I cant remember the last time she did anything like that for me.

Both my legs and arms are getting really sore, jelly like, if I bear much weight I shake. My shoulders are painful and my neck is tense, it feels like Im pulling, stretching muscles when I move my head. What started out as a (now I consider) a really sore back has blown out to an incredibly painful back thats affecting every part of my body in a pretty serious way. I just had to provide a new referral to my pain specialist so I have been at this with this guy for 12 months now and there has been no improvement at all, its just gotten worse, a lot worse. I started out in constant pain, at the time I thought it was really bad, I had periods where it was, where the pain was debilitating, but for the most part it was tolerable, now days though, it is rare that the pain is tolerable, Im on high dose pain medication all the time, often taking more than the base amount of pain medication just to manage. The pain I am in now is constantly debilitating, anything I do comes at a price, I pay for every activity in greater pain. After a year this is where Im at, my GP and I are getting of the opinion that I should look at a new pain specialist. Very soon thats whats going to happen I think, I think I need a second opinion because Im going backwards, I feel rather quickly. Ive actually been up for a while this time, a couple hours, but its time to go lay down again.

Seriously my Dad can be a jerk. I just got up again and went to get my meds, its clearly been a bad day for me, Ive been in bed a lot today, Im sure he thinks its lazyness not a medical need. This morning he went to turn down the heater after my sister left and said that I didnt need it so hot. I said that I did because Im not moving much, his response was for me to move. When I went to get my night meds Dad asked me to hobble down to Mum and take one of the dogs to her. The reason for this, Mum sent Dad quite a lengthy message having a go at him, so they are having an argument which means he wont go down to her, he would rather add some discomfort to me.

Im trying to keep up a normal fasade, basically trying not to show anything but a cheery outlook or atleast that Im ok. However, as I said Im really depressed, more than that Im starting to get increasingly angry. Im frustrated, really frustrated but angry, like internally I feel like trashing everything in sight. Internally, I am so pent up that its hard to control. Im kinda like a kettle without a release, about to boil so much that Im going to explode.

I have been asleep the most part over night, Ive woken up at 6:30am and pretty keen to go back to sleep, Im rather drowsy. Im trying to stay awake for a bit, Ive been in bed so much lately that while my pain is managable I dont want to be in bed unless I have to, though it is getting very close to having to.

Another few hours sleep, Im going to go into town shortly, sorta get it out of the way. Im in a fair bit of pain, I know its a bit dumb, a bit wishful thinking, but each time I go to bed I hope to wake in less pain, though most the time I wake Im in a lot of pain, I dont think I can remember waking in less pain than normal.

I went into town and got my standard stuff and came home. Before I left I put a load of washing on, Im waiting for that to finish and then going back to bed. Im exhusted, it seems to be taking more and more out of me to do smaller and smaller things. Like a trip to the servo shouldnt cause me to be this tired.

I didnt need that, I was about to put out a load of washing, have my meds and go to bed for a bit. My Dad comes out of Mums room and we had to go into town and bring my sister home as she was sick and couldnt drive. I got home, put out the washing, took meds and went to bed. I laid down for about an hour but I didnt sleep. Im really tired but Im in a lot of pain and I cant shut down my mind. Being able to find a position that was comfortable and even when I was in a position that was tolerable my mind would fixate on the pain and I wasnt able to tolerate the pain. My left shoulder has been giving me a lot of pain today, causing a fair bit of arm pain, but its not constant or predicatable, like if I move my arm it hurts, if I move it exactly the same again it wont. Im going to get the physio to look at both my shoulders next time I see him. Im going to have something to eat and hopefully after that Ill actually get some sleep.

Dealing with the constant spinal pain is one thing, its incredibly difficult, the pain can be incredible. Then there is pain in shoulders, arms, legs and neck that come and go, generally not as bad as the spine but pretty intense because its new. To an extent you get "used" to the chronic pain, its just there all the time. But when pain increases or "new" pain arises that becomes your primary focus. The chronic pain is still there, but the focus is driven elsewhere. But you end up just being in immense pain all over.

I managed half a serving, but that was it. Ive come over pretty knackered, Im very close to going to bed again, it came on really strong. Dad has just taken my sister into hospital. I went to bed not long after my sister left and slept like 3 or so hours. I woke up having a lot of issues with walking, Im in a fair bit of pain but Im really stiff as well. I just got up to get the wall split remote and walking is incredibly difficult, Im really slow.

Ive been up for an hour and Im really tired already, I dont think Ill be that far out of bed. Another couple hours and again Im walking around really stiff with little steps. Its getting really really frustrating. The pain isnt too bad at the moment though. My sister is having IV Muscle Relaxants, which I really think would actually help me, I think a lot of the pain is muscular and physio is one thing but there needs to be an intervention to relax the muscles.

With the irratic sleep cycle Ive found myself in, each day just merges into the next. Theres not big multi hour break between each day, theres no buffer. Im awake for a couple hours, asleep for a couple hours and repeat, thats the way day and night, so its hard to distinguish each day as it moves along. As much as I am in bed, its as often laying down for an hour to take the pressure off my spine as it is to sleep. While I do sleep a reasonable amount, probably around 8+ hours a day, its broken up into smaller amounts, 1.5hrs - 3hrs so its not as restful as a proper 8+ hour sleep. So I am pretty tired almost all the time. Then there is eating, I dont tend to eat a huge amount, a donut in the morning is common and 2/3rds a serving of a meal from Woolies or Coles for a nightly meal. I drink a fair bit, iced coffee being a main one. Im trying to broaden what I drink. Eating is a bit irratic as well, like there is no set time when I eat, if I eat. Sometimes I eat at lunch, at 11pm, early morning or not at all. Pain often puts off or stops me eating, at the moment its problems with my bowel movements, I keep feeling very full which is making me not feel hungry.

In mid-January I went on long term sick leave from work, my sister had been in hospital with a mental health situation which included her attempting suicide twice. For a number of reasons I became her carer, in doing so my mental health became severely affected, which nesseciated the leave. Since then its pretty much gone down hill. My mental health became incredibly bad, there was a range of severe symptoms, unfortunately I am still waiting to see a permanant psychiatrist and only recently have I started seeing a psychologist that I gel with. Ive seen a couple urgent psychiatrists during this time, Ive had a number of medication changes, though I dont think they have worked well over all, there has been a big push to reduce the number of medications Im on. Which I think has been good but without having regular follow ups, the effectiveness or ineffectiveness hasnt been monitored properly and medication adjusted as needed. 7 months later and I am still waiting to start regular appointments with a psychiatrist, to get medication monitored properly and deal with the symptoms of my illnesses.

During this time I have had to deal with my bladder cancer, dealing with procedures to check for a re-occurance. However, these have been minor. What hasnt been is the procedures to my spine, Ive had a procedure to my sacroiliac joint, which revealed issues with my lumbar joints and a subsequent procedure performed for that. I started off with a painful back that had would flare up and cause a lot of pain. With each procedure the pain experienced increased significantly, as has the pain medication needed to manage the pain. I am now at the limit of the pain medication I can take, however I am still left in a great deal of pain. If I hadnt gone on sick leave in mid-January, I would have at a later date due to my back. All the encouragement to go back to work wouldnt have worked well, everytime I go onto SCI its a 6 week wait for payments so coming off and going back isnt the best way to go.

Ive woken up again, its morning. I was up once or twice over night, but now Im up again and Im thinking about going into town, do my normal servo thing but also get some meals from Coles. Im not in a huge amount of pain, not in comparison to normal anyhow so it might be a good day to go to Coles. Ive got to sort out my rebate from my health insurance for the psychology appointment and make an appointment. Ive also got to organise payment for the month, I thought I had done it already so Im a bit confused why I have another invoice.

I went into Coles to get some meals and some drinks. I really struggled, I wasnt in much pain to start with but the pain increased rapidly, by the time I was done I could barely move. I was in a huge amount of pain, I was struggling to walk, by the time I got back to the car I felt like I was going to collasp. I sat in the driving seat for a bit before I made my way home. Ive managed to get the two bags of cold drinks/food out but there are 2 more bags that I have yet to get. I had a lay down not long after getting home, I hoped that I would be in less pain after I woke up but Im in far more pain than before I laid down. I can barely walk, Im in a fair bit of pain, Im in a huge amount of pain when I walk. I think In going to ask Dad to bring in the drinks that are still in the car or they are going to have to wait until I can move a bit better than I am now. I laid down for a while, Ive been up for less than an hour and I am ready to lay down again. It hurts quite a fair bit to sit at the moment. Ive had another nap, Ive just woken up again and Im really drowsy, I dont think Ill be up long before Im back to bed again. Im drowsy, but its more so about laying down. Its so much less painful to be laying down than sitting or standing, though after a while something happens and I kinda lock up and Im pretty well forced to get out of bed..

I went and laid down again, laying on my left side my right arm kept spasming rapidly causing my arm to sorta punch the air rapidly. I couldnt control it, I couldnt get comfortable, I felt like I was shaking/wobbling. So I rolled to the other side and happily laid their, I was kinda relaxed but was unsettled for a lack of a better word. Then my legs lost control and just started kicking uncontrollably. My arm going nuts has irritated my thorasic, but my legs kicking as they did has really hurt my lumbar. Im tired, really tired but now Im pretty concerned about laying down. Ill have to wait until Im really tired or something before I try laying down again.

I say things like this a bit but having this spinal issue is really frustrating, it really sucks. I dont really know how to adequately describe it, having a disability like this, being in this kinda pain is not appropriately described as frustrating, debilitating, infuriating, it is one of the worst things Ive ever experienced in my life. To make matters worse and to reiterate what Im going through there is spasms, for some time I was having nearly constant spasms, now its random. It just reiterates the pain for me, it hits home and reminds me that I am very much not in control of my body. Thats probably the hardest thing, Im not in control of my body, the level of pain varies sometimes because of what Ive done, sometimes just because, often you wake up and your in a lot of pain, there doesnt seem to be any rhyme or reason, you just are and that impacts your entire day, no control of your body. Then you do something, you go shopping, do washing etc. and next thing your in pain, so you either you dont do anything, curl up and give up or you do stuff and your in pain, your sorta in control but its not much of a choice given, you have to live. Thats the trade offs, doing something you know will cause pain because it needs to be done, you kinda just do the essentials, though sometimes you will do things you want to do because you just need to do it.

I was going to say that dealing with my pain is harder than my other issues in comparrison, but thats not exactly true. When my mental health is bad it is incredibly difficult to deal with, its more tormenting than pain is. For the most part despite the intensity of my mental health symptoms I can more or less function, what I deal with is very internalised and unless I tell you that I am dealing with something you are unlikely to know. Its quietly being tormented. Thats something with the pain, it is noticable, I cant lift my feet and bare full weight on either foot without a great deal of pain so its rather obvious that I am in pain when I walk. I hate people looking at me when Im walking, really slowly, it happens a bit when I go shopping a bit. I feel people are judging me on my weight not knowing the issues with my spine.

My weight has actually been on my mind a bit of late. Doctors have commented on it a few times recently, as has Mum, though she has a tendancy to randomly bring it up. Im eating a lot less lately however I havent been losing weight, though I am drinking more iced coffee than I normally do. My weight hasnt really changed at all, either way. While my weight isnt having a direct impact on my health yet, but I know it will and likely sooner rather than later, my knees are likely going to be an issue in the years to come.

I had a gastric sleeve some years ago, there was a fair bit of pressure from my Mum to do it. She had one, while my sister had a bipas they both lost a fair bit of weight, eventually after pressure from Mum and a desire to change my life I decided to have a sleeve myself. As anticipated though, it only lasted a while and I stopped doing the things I needed to and put the weight back on. I dont really think that its so much that I need change what I consume that much, I dont do anything, Im not active. Thats where things need to change. But with my back the way it is it makes it hard to move.

Ive been up and down a few times. My sister and I went into town early morning and got a few things. Ive woken up at like 7:30am pretty damn stiff and sore. Im really not enjoying being awake at the moment, well a lot of the time. I did get a pretty decent couple lots of sleep. Im not so tired at the moment but Id like to lay down to try and reduce the pain. When I walk I get really weird pressure in my head, like it comes with each step and I get relief when I lift off. Im sure it will be short lived, if it persists then I might have to get it checked. I dont think it is going to be long before I go back to bed, the pain is pretty unpleasant and Im finding sitting really hard to do. I am hoping, given that I went into town and did what I needed to do early this morning that I might get into get a kitchener bun today.

I had another sleep, Ive woken up really tired, almost considering going straight back to bed, I need to have my morning meds first though.

I finally got the energy and motivation to go get the Kitchener bun and I told Dad I'm going in and he asked me to get Mums medication from the chemist. It's normally not that big of a deal but I'm not great physically or mentally today. I just wanted to go in and get the bun and come home. But now I'm waiting for a heap of scripts to be done, thankfully there is a chair and it was free. It makes sense that I grab it I'm basically next door but seriously frustrating. It sounds selfish but I just want to do what I have planned and come home at the moment, its what I've got myself psyched for not to have a heap of other stuff dropped in my lap last second.

I went back to bed for a while, I struggled for ages to find a comfortable spot. Eventually I did and fell asleep for a while. Im still having trouble with pressure in my head. Im really not enjoying walking and Ive been sitting for a while and starting to not enjoy that either. I really cant find a spot that I am enjoying being in today. Im finding it hard to keep my eyes open, I wouldnt be suprised if I wasnt up for long again and went back to my bed.

I dont know whats up Dads butt but he is in a mood. As you know we have 4 dogs, 3 are large dogs and all are inside dogs. They are regularly under your feet, its frustrating, Dads not handling it today at all, he is going on and on about them being in the way. Its driving me nuts. I do feel for him, he is lumped with all the cleaning etc. My sister has been out picking stuff up, came home and then went out again, she doesnt help Dad at all and physically I cant see why she cant help.

I went back to bed and got pretty settled quickly and fell asleep however my alarm went off and woke me up a bit over an hour later. I feel a bit more alive than I did. Im still pretty tired, worn out and really sore, keeping my eyes open is still hard, sitting isnt so bad, not in comparrison to before, I dont feel comfortable in pretty much any position today, its really frustrating. I cant sit still to save my life, Im constantly moving around, I cant just sit comfortably for any real length of time. I have to have a shower tonight, I know I didnt last night, Im not sure about the night before. I know its going to hurt but I have to do it tonight so Im going to in a minute before I lay down again.

I keep loosing control of my legs, they just shake uncontrolably until I can do something to settle it or they settle on their own. Generally its when Im getting up.

I had a shower, Ive got a shower chair which is normally a really good thing, but the way Im sitting on it, with my head forward is causing a fair bit of pain. So showering is less than plesant after a few minutes now. While I have a chair, there is still a bit of walking and standing involved. You have to stand to dry yourself, then walk to my room, get dressed then walk back to the kitchen, by the end of that at the moment I am in wicked pain and just knackered, so much so that Ill be going to bed shortly.

I had some more pain medication and laid down for a while, I really struggled. Everytime I moved I was in a lot of pain, if I kicked my blankets down the pain was extrodinary, there was a number of things I did which havent bothered me in the past that really bothered me today. Even sitting up now, I dont know if its muscle or spine but it feels like my spine is being pulled apart when I bend, you know like when you rest your head in your palm and elbow on the table, doing that is really not a good thing. My shoulder is incredibly painful, left one, pain is running down my bicep which is making doing a lot of things very difficult.

Im not bad enough to go to hospital, though I see less and less point in going. They will give me a shot which will help for a few hours, it kinda "resets" things but its taking less and less time for the pain to return. Im in so much pain in so many places at the moment but no one seems interested in doing anything about it. Im being left pretty much on my own, in pain, with no help from anyone to minimise it. My pain specialist is aware of my situation and he is just leaving it as is. I just wish someone would do something to alieviate the pain.

I wish Dad would stop screwing with the heater. Its finally been set to 24 most the time, which works well for me and is lower than what my sister usually has it. My Dad keeps lowering it and turning it off. He came in the other day and said something about turning it down, that I didnt want to melt and I said Im not moving much. His answer was for me to move.

As I have kinda made it clear Im in a great deal of pain today. Ive been in bed a fair bit, its about the only place I can relax for long. I had the kitchener bun this morning and that went down ok, but just went to have tea, like 12 hours later and I got a few mouthfuls and that was it. I just feel too ill from the pain to eat. Im going to go to bed again in a minute, I really want to just sleep. Ive had my night meds. Im hoping that I get at least a few hours sleep with the night meds under my belt. I just want a break, I want some time off from this pain.

I did go back to bed and slept atleast 4 hours. I woke and Im sure I could have slept longer, in fact Im dozing off a lot. I went back to bed and got some more sleep. Im still a bit drowsy though, I might not be up for long again. Pain wise though I feel like it has settled a fair bit, walking is a lot easier, a lot less painful, than before I went to bed which is really nice. Im hoping it keeps up. I might go into town soon, I could go back to bed and get some more sleep but I feel like Ive been laying down enough for a while, Ive pretty much had enough of it. Its weird but given how long I have been laying down for a couple hours at a time, laying down pretty well continually is really off putting. I feel like Im going to need to lay down again soon as Ive been up for a while so I dont want to lay down too much now.

I figured while I was doing well Id go into town and do my normal stuff, I got away with it not too bad but Im sore, Im getting ready to go back to bed. Ive got to stop this normal stuff, I buy similar stuff each day and it costs around $80, today was closer to $100. Spending that much each day is adding up, a big part of it is smokes, some how I have to stop smoking, I just have to stop spending so much money on non-essentials.

I got a considerable amount of sleep over night, especially in comparison to normal. I went back to bed not long after getting back from my trip into town and slept another few hours. Im feeling pretty awake now, I feel like Ive had a pretty restorative sleep. At the same time I dont think its going to be ages before Im back asleep. Pain wise Im not fantastic but Im moving a lot better than I have been, even walking is easier. Sitting is noticably painful, particularly just above my butt crack, that in itself may be sufficient to throw me back in bed. Ive been up for little while and am pretty tempted to go back to bed already. Ive done a little tidying up, nothing major but Im well tired now. Im well and truely ready for bed now. Pain is wrapping around my sides into my chest, hurts a bit to breath.

I woke up again after laying down yet again, its 1pm. I slept pretty soundly for a couple hours again. I only woke up because I moved and there was a heap of pain that made me sit up a bit. It really startled me but I cant tell you where the pain was. Its crazy, Ive been up for 30 min and Im ready to go back to bed, I have slept so much overnight and today, I dont understand why or how. It is unusual for me to get this much sleep consistantly. I mean I would sleep and then wake for a few hours but now its sleep for a number of hours and awake for a short period of time. Pain wise, Im sore but I have random acute pain however my neck is pretty painful.

I used to work repairing computers and laptops, I was pretty techy. That was like 15 years ago. My Dad still uses Windows, the new version and often asking me how to fix things. I use Android Tablets. Work is Windows but I have IT services to fix any hassles. I cant get through to him that I just dont know anything to do with Windows anymore, besides that I was into hardware not software. Now its mobile phones, he had an Oppo through work so it was fixed through work. He retired and I recommended a Samsung phone, partily because thats what I use so if there was any problems I had a better chance of fixing it. He took the recommendation of the Telstra guy and got a cheaper, emphasis on cheaper, Google Pixel. I have no idea how to fix a thing on it, and it is regularly breaking. Though, it doesnt seem to be breaking to me, more so he plays with it. When you ask what he did its always nothing, it just happened. Which is less than helpful in idenditfying where the issue originates and have a chance at working out whats wrong. Again, though I cant get through his head Im not techy anymore, phones were never my thing, software in general is not my thing.

He just came in and said that the secondary fridge is going to be emptied so the drinks in the primary fridge need to come out. I have a few in there, but he was on about a bunch of drinks of my sisters. I have no idea why he was carrying on at me about it, they are my sisters drinks not mine. She has heaps in there, I usually keep a days worth in there, she has weeks worth. Dad wants to get rid of the second of the second fridge, has for a while, but now its apparently running all the time so it has to go. He's hell bent on reducing electricity, which is fair enough but using the heater, TV's etc is likely a big area of usage.

Its quater to 3 Im heading back to bed. Im worn out again and Dad seems to be in a bit of a mood, not a bad one just lets do this and that and Im not interested in it. Im too tired.

I got another 1.5hrs sleep. Id like to think that would be it for a while. I woke up to Dad winging, my sister got home from being out getting a fish, she showed Mum and next thing she is going in to get stuff from the shops for Mum. Dad went shopping for Mum this morning. More crap, Mum feels sick all the time, Dad on about the crap she eats. Blah Blah. I just got out of bed, Im not in as much pain as I have been, but Im still in pain. I really not interested in hearing about it.

This sorta shit happens often, Dad, well all of us, winging about what others are doing. That Im sure happens in other houses but this is a house of 4 disabled adults. People winge but dont address, Dad is really bad for it he will winge but not actually talk to the person. None of them, even though they have been told to, use boundries. I use boundries and cope shit for it. There is a difference between winging about others and talking to others for advise and support. There is a huge amount of winging and no action. Its annoying the shit out of me.

I had a shower, brief chat with Mum. My sister had gotten home by the time I had gotten out of the shower. I came down to my tablets and started watching my show again. Then she started, one sentance at a time, random comments. I dont mind her or Dad talking to me but do it all at once, not bit at a time.

Im starting to get really tired again, its 6pm, I dont think it will be long before Im back in bed. Im really getting pretty knackered again.

My sister is doing the cards thing for Woolworths, she completed a set and proudly let me know. I just said fair enough, which she questioned. I was like well what are you gonna do with them, she said keep them. I just dont see the point in that, why on earth are you collecting crap just to keep it and do nothing with it. If there was a point to it, if it had a purpose then no worries, but to sit and do nothing, spend all that extra money on food that you wouldnt normally, it just seems like a waste of resources.

I laid down again for a while, Ive woken up pretty sore and stiff again. Im getting really frustrated again, Im back to short sleeps and a short time being awake which is really irritating. You dont really get any sleep, but your always in bed, when your up you get so little done, even given my circiumstances I get little done.

Dad's attitude to it all is bugging me, he's made a few comments about things. He asked me today what I was doing when I went to get ready for a shower, like I was going back to bed and he had an issue with that. He has an issue with Mum sleeping as much as she does, so it stands to reason that me being in bed a heap is going to be an issue. I dont really understand why, when Im up Im just watching Netflix, its not like Im doing a huge amount with my life. My sister and Dad are very much day time is for being awake, generally regardless of how you feel, even if you were up all night. Its when you do stuff. But when you cant do stuff, what does it matter.

The pain is returning more significantly now, particularly in my hips, making it harder to walk, sitting isnt that fun as a result either. I can only imagine that this will get worse over night, though I didnt take any pain killers with my night meds. If I need them I can take them later. I can feel the tiredness coming on again, with my night meds included Ill get really tired I imagine. I havent had tea and to be honest Im not so keen on having anything, seems to be that its getting harder and harder for me to eat on any kinda consistant basis.

Im actually suprised my sister seems to have actually realised how much pain Im in, she has done a few small things lately to help. It doesnt have to be big, little things to help mean a lot.

I woke up at 1am, Im thinking of having something to eat shortly, I might manage to eat most of a meal. Im in a bit of pain and Im pretty stiff, my legs are starting to get really sore from walking the way I have been. One of our dogs that usually sleeps with my Mum came down a minute ago, turned out it was sleeping with Dad tonight. Dad had got up for the loo and the dog didnt want to go back in with Dad. I came to help, by that time Dads back in bed ad the Dog is just outside the door, I told Dad to call the dog and he essentially whispers for the dog. He was less than helpful and I got that shits up and forced the dog into the room, I half picked up the damn thing. It hurt so damn much, its been a little while since it happened and Im still in so much pain. I can tell this is going to flare things up a heap, it bugs me, the dog wanted to go outside, so Dad left it with me and went back to bed. Then instead of calling him normally he does it really quietly and instead of getting active when the dog wouldnt come he just laid there and left it to me. So it will be interesting to see how screwed I am pain wise when I wake up in a few hours. Im in a lot of pain now, but I expect it will get worse.

I managed half a serve of tea, I dont know if Im full or if I just dont have an appitite. My neck is really painful, my back is too, the whole spine is painful. I feel pretty sick now, like Ive eaten way too much or something. Im getting really tired, Im going to go back to bed soon.

I woke up at a bit before 5am, Im in heaps of pain and Im still really tired, I feel like Ive gone back to what I was like a couple days ago. I just went into town, this did not help my pain at all. By the time I got home I just wanted to go to bed, Im having a drink and doing just that. I got home and I had a text on my tablet from my sister. I pretty much never hear the message come through, if I do it sounds the same as half my other notifications so I have no idea that its a message. Ive told her if she needs me for something urgent to ring and Ill ring back. Ive also told her that I need her card to get her stuff, so she has to tell me before I leave. I did ask her why she persists in sending text messages, I never get them. It just ticks me off no end, help me and help yourself.

When I go out I like to have a plan as to what Im doing, like Im going here and here, Im getting this and that. Knowing what I have to do for that trip helps me plan and manage my pain and energy expense. You know Im going to the servo, I have a rough idea how much pain thats going to cause and I kinda budget for that. Having more added to the trip puts that out and it might not seem like a lot but it takes more pain than what was budgeted for, which makes things hard, makes recovery longer, might mean needing to lay down or lay down sooner or its just too much.

My team leader sent me an email asking how I am, Im not really in the mood to go into detail so it was a brief email back. My back, shoulders, necks are really painful, my legs ache really bad. Ive really had enough of it all today, Ive been up for a while but I think Ill be going back to bed soon. Dad said good bye, he was taking Mum to Drs, I had forgotten, he made a fuss. Seriously, the amount of pain Im in, I struggle to think of anything much else, it really does take over everything. If its not in my diary I dont have much of a home. Next he says about letting the dogs have some time outside, turns out he hadnt even let them out. So I let them out for a bit, then my sister turned up home.

I went and laid down but couldnt get comfortable, I just kept moving from one position to another which ended up hurting more and more, particularly my shoulders. Im really frustrated, I need to lay down and actually rest. Im pretty tired but its more so the pain thats getting to me, I just want a break. Ive taken some extra pain killers but they are doing less and less, the only thing that is really doing anything to manage the pain is regular laying down, but that is ticking me off a fair bit. Actually Dads attitude towards it is really ticking me off, he seems to have a major issue with it and he is making me very aware of that. He isnt terribly understanding when it comes to long term medical issues. He acts like you should be used to it and just carry on like normal. He has medical issues and pretty much doesnt allow them to alter his life that much

I spoke to Mum for a while, Ill get into that later, but after I went and laid down for a while. I was in a fair bit of pain when I went and laid down, laying down I was having what I can only describe as spasms, my arms flung about a bit, my legs carried on, my shoulder b!ades were going all weird. It was like all my nerves were going haywire at the same time, half my body just went mental. I didnt really get any sleep, I dozed a bit but that was it. Ive gotten out of bed and I dont feel like Im in so much pain, my back feels a lot less stiff. Its kinda odd. I sound pretty pessamistic but I dont expect it will last long.

They dont listen, I needed antacids so I popped into the servo, but they have stopped selling them so I had to go to Woolies. By the time I got to where the antacids are I was completely stuffed, I was in a heap of pain, so much so that I got the wrong flavoured antacid. I got home and recounted the story to my sister who said I wish she knew she would have got me to get stuff. Seriously, listen, I didnt know about your thoughts and I was explaining how I couldnt have been able to do it.

Mum and I talked today and she was saying that she was sick of hearing Dad winge. He winges but doesnt do anything about it, apparently he winges about my sister heaps, it makes sense she is doing a lot of frustrating shit, but he doesnt follow through and address anything. As I suspected he winges about all my laying down and about going into town. Im sure he is winging about me smoking inside too. There is some stuff that he is winging about which Im sure is ligitament but plenty he just needs to pull his head in on. He needs to stop just winging and actually address some shit.

Then we got on to how my sister has an amazing pain threshold, blah blah blah. If only I could actually relate to them how much pain Im actually in. Like I dont wish this pain on anyone but if they could have a taste, enough to know what its like. None of them have sat down with me and talked about what Im going through, they see the effects and they know bits and pieces, well Mum does. My sister might know a little but Dad hasnt talked to me about it at all.