I dont know what to do

[ClockFace]

I went and laid down for a bit, hoping to fall asleep but instead the spasms I was having when was sitting down started to intensify when I laid down. A few times my body sorta got involved and I ended up in a bit of a ball. The one that stopped me and made me get out of bed was both legs spasming hard, the pain was incredibly and then my back got involved and it was spasms and pain as well. I couldnt handle it  and I started to freak out. I wanted to run away from myself, it was a completely new experience, I forced myself to get up and out of bed and I just wanted to run. Oddly, since that happened the spasms have stopped. My head is pounding. Its been 1/2 an hour and Im still shaking, right in the very lower part of my lower back is still quite painful.

I dont feel right, I feel like Im in someone elses shoes. Like my body isnt the one Im in anymore. I feel like something happened when I freaked out. My legs still hurt, but not nearly as bad. I dont know what to do with myself, I feel very unsettled.

The swelling has gone down heaps, maybe its this headache thing I have going at the moment thats making me feel out of sorts. The spasms are coming back occassionally. I am getting really tired. I cant seem to stop shaking, I seem to vibrate.

Im scared, Im terrified that this is it, Im having medical issue after medical issue, that one of them that I have or will get will have a lingering bite to it, one that wont be shaken off.

So I wound up in ER again. They have decided that I have dystonia, which is freaking awesome. They have given me a med to help manage that dystona sadly its not a cure and it is yet another damn thing I have to monitor etc for at least a while. The med kinda works, I feel better than I did but Im still on my journey, Im still sick a lot. OMG I cant even get one sentance out before I have to correct yet again. I have no idea if what I am writing tonight is making any sense.

Im not sure what was going on last, I dont think I liked the new medication Im ok to clam my legs. Which are more having issues in the thigh now than the calf. Ive had the heater going for ages and Im still freezing cold, I dont have a tempreture to sing about. My throat is pretty sore, but that could be because I didnt have my mask of for a period of time last night. Given the amount of time off sick recently and that Ive been on antibiotics as much as I have I probablty dont have anything on m y extras. I keep having the feeling of being lost and alone, scared no one is ther with me. Like there is little support at home, so its not a shock but the feeling lost, which I suppose is like the feling of being isolated.

The legs are frustrating me to the living end. It was all centred around my lower leg, below the knee. Its now hammering hard between my knee and my waist. Its much more frequent, though all the sudden they have calmed dow a bit. I just smoothered them in heat gel to see if that helps. It does seem to calmed them down so I will guy some Vultaran or however its spelt and try that.

I feel really bland today, Im really tired, having spasms through your sleep doestn promote restoritive sleep. I am incredibly tired today, Im only up because of the phone calls and appoints  I have to do. I kinda just want to hide out in bed at the moment. Im really tired, I keep thinking while Im on hold I could be laying down but I know if I did that I would fall asleepp little and I might not wake when the call is actually answered. Ive been on hold for an hour, which is the norm lately.

I feel like my mind is being dragged to school, it really doesnt want to get up and play at all. Everything seems to not be itself. Im certainly on auto piot, and I feel it now. But every now and then I see that Im not and have to try and jump in, which is hard.

I dunno if Dad is pissed with me or if he just gumpry in general, he's hardly said a few words to me in the past few days. Apparently, he hasnt said much to my sister either.

Im fairly lost as to what and where I am. Like I feel so completely out of it. I think them removing my antipyschoic immeditely hasnt helped but addition of this temporary medication to help the muscle issues has not helped at all. I mean the muscle isues have got better but I have these challenging mental things to deal with. Its seriously messed up, Im not able to concentrate at all, I cant work shit out, I cant focus on anything, even writing, telling my story etc. Its difficult and I require many breaks. Telling my story can be challenging at times, but I dont even feel like its exactly my story to tell today, because I feel so disconected.

I had come more pain killers when I got home and laid down a while. Not long how for but enough for them to kick in. I couldnt sleep  though, I just laid there randomly saying wierd thing to myself. My tongue has been hurting heaps today. Its really painful to swollow, even water. Oddly its on the opposite side than normal.

The car is fixed so Dad and I will go and collect it tomorrow morning. Its hard to explain how goodit will be to have a car, essentially to myself again. Mum is apparently on about her driving more when the car comes back. Ill believe it when I see it but it could make for some interesting issues. I do hope she does drive it more, but I also hope she will work with me to make sure I can get to my appointments on time.

I had another scan today, similar to other scan I had on Friday just gone. I recon I feel asleep atleast a dozen times, a few times something startled me and woke me up really abruptly so I would jerk quite badly. The jerking thing is being a mainstay, I dont even need to fall asleep, I just keep jerking or having a conversation with no one around. Im assuming Im having micro naps or somthing similar. I think to be very annoying, Im coming down with a cold as well. My left shoulder is spasming all on its own randomly. I havent been drinking much lately and Im assuming thats affecting my tongue. I havent smoked nearly as much as normal today.

Seriously, Im not sure exaclty what is causing this, the removal of one med and the addition of another or something completely different. Reversed things now, Im taking myself off one and hopfully wont revert back to contractions again and restarted the other at a lower dose.

[ClockFace]

I went to bed around 8pm. I had a call around 8:40, I must have been completly out of it because I didnt hear my phone ring or anything and it  was right next to me. I woke up around midnight. I didnt have the medication that I was talking for the muscles contracting etc and I had the lower dose of my antipsychotic, I feel much more myself now. I dont feel anywhere near as messed up in my head as I have lately. Im also not shaking or my mucsles arent contracting almost at all, so Im not sure which one has been causing my problem but will have to see if any problems persist. It was a good idea that I changed things when I did because my eyesight was getting blurry and Ive just realised I can see better now than I did earlier today, not to mention my head feels like I can actually work out whats going on.

I dont ever wear socks, I rarely wear shoes or anything on my feet of recent times, Ugg boots or thongs are about it. However, I get really cracked heels which with diabetes is not a good thing. So the idea was to get cotton socks and put vasoline on my feet and then socks over the top like the internet suggested. Ive done that tonight and I figured the socks would come off during my sleep. But no, they are still on and really comfy. They are diabetic socks so they dont feel so tight etc, they are just comfortably sitting on my feet.

My tongue is so sore, Im going to have to speak to my GP next visit pretty well regardless of anything else. I would think that the issues with my mucsles are dealt with, they have settled pretty well 100% now. I have been able to sleep really soundly for like 4 or 5 hours overnight which is really good for me. The other side affect it has is to reduce saliva production, which with me not wanting to drink as much as normal has left my mouth drier than normal, which is probably why my tongue is so much more painful. Any which way its on the top of the list of things to discuss with her. Ive got an ulcer on the side of my tongue, its not the first but its the sorest Ive had. I cant even eat ice cream, its seriously painful. Eating other stuff isnt as painful but still hurts. Though I did try to eat some chicken last night and that wasnt a great experience, Im going to have to try and find pretty soft stuff to eat until this is resolved.

Ive been up for a while now, its quarter past three, the thing that is kinda amazing me the most is how well I feel in comparrison to the past month or so. Im not holding my breath that it will last but its nice to feel kinda like ok. Last night when I went to bed, I was pretty certain I was coming down with a cold or flu or something like that and I wake up 6 or 7 hours later and I feel almost like normal. Other than my tongue, back and shoulder Im not really in much pain. I still wouldnt say I have a huge appetite or feel like drinking heaps but there isnt a headache, my stomach feels heaps better than it has, Im not as achy as normal. The only other difference than stopping the medication for the dystonia and restarting the antipsychotic on a lower dose was that I tried Caruso's bloat eze. I dont know  whats what, but my stomach isnt as hard as it has been, I feel far less like Im as huge, I havent lost weight, but I feel like there is less of me. Oddly, I am craving water over anything else at the moment and the blurriness has gone away. I really hope this sticks.

I actually feel really good, its like I have some energy, not heaps, not like that much that Im going to get up and do a heap of things. I might put on some washing soon, I might potter a bit, just I dunno, I might do something because I can.

I cant remember if I wrote about this but my GP is doing a referral to a MACS clinic to get some more help with everything Ive got going on. My understanding is they will also help identify the root cause of what I have going on. There is some discussion of an autoimmune disease. What ever they workout they will help me learn to deal with it and treat what we can.

One thing that has been brought up lately is that I am dehydrated, the last time I was in hospital they put me on IV fluids to get sorted out. I suspect that I am dehydrated again.

We are collecting the Rav4 today, so I wont be sharing Dads car much anymore, which Im really looking forward to. I keep trying to put it off, but I want to go into the shops and get some yogurt and some custard. I was going to put it off until we go get the car or until my appointment today but Im hungry and eating anything remotely solid is very unpleasant.

Got the car, which is good. Took me 1/2 the day to get the things done that I wanted to get done finally. I organised my new glasses, all 3 pairs I need now. Got to Medicare sorted. I checked my profile on Defence Health and it looks like my issue has been resolved. Im really sore now, my legs hurt a fair bit, they are better but they get pretty painful still if I walk too much, add my back into it, which is triggered quicker with my legs the way they are.

I have been on at Community Mental Health about getting on to this comprehensive case management thing. After being ignored for sometime I actually caught someone out on the phone. Despite the additional information and support from Call to Mind for the case management thing, they have decided that they are not going to do anything about it and basically wont be providing any further services to me at this stage. Despite me being very clear that I am unable to get a psychiatrist to take me on who suits my needs. I asked them what I was supposed to do and then said am I just to wait until I have another break down or worse before I can actually get some help and they essentially agreed that this would be it. To say I am frustrated is an understatement, I just want to see a psychiatrist and get treated for this shit.

Another fun turn of events, today that the left hand side of my body, in particular my shoulder and arm are moving uncontrollably, its like random jerking but only when I am at rest. If Im actively doing something then there is a chance it wont be an issue, however writing on here for instance isnt actively doing enough to stop the movements. My assumptions are that this has to do with the dystonia thing. The only other thing, particularly when its my head/body, its like Im falling asleep suddenly but almost at the same time Im waking up. It is either like a spasm, where my arm or leg etc muscles contract and I have a rapid movement or I lose all control momentarily.

I tell you at some point my GP is gonna get suspicious that Im making this shit up for attention or something. Like how does someone have this many issues one after the other. She is organising for this MACS thing, thats a bunch physicians, nurses and other specialist getting together and trying to work out what is actually wrong with me, which would be nice to know and then hopefully we can treat it.

These involuntary movements Im having are really getting under my skin. Im going to laydown and see if I can sleep them off.

I got a couple hours sleep but woke after some kind of night mare involving one of dogs that just constantly barks. That really doesnt seem like a lot and I dont remember the details but it was enough to get my normal heart rate of 75-80 bpm to 105 laying in bed. I wish I knew what freaked me out so much but I could hear my heart pounding out of my chest.

An interesting thought though, it wasnt up heaps but my blood pressure was slightly higher than normal too, so something fictional, thats completly in your head, that you have no control over can have such significant biological reactions. Yet, people deny mental health issues, claiming them to be all in the head etc. with the indication that this can have no influence over the real world. What happens in our head can and does have an impact on our physical world.

I woke up again, but this time it is like I have been through it all. Ive woken up at what I remember as being the same time as the last time I woke up, a bit strange but the show I am watching, Ive seen it all before too, I actually stopped because I had seen it all and so much of it that it was really boring. Its more than de ja vu, it went on for like 20/30min.

Ive been up for about an hour and Im really quite awake, my mind is kinda going tonight but not much is happening in it. When I went to bed earlier, I completely forgot to bring the dogs in and shut up the back, which is pretty unusual for me to do.

Ive been so frustrated lately, every which way I turn I am coming up against solid wall after solid wall and everyone keeps expecting me to scale them without any effort. Like I shouldnt struggle in dealing with the constant barrage of issues Im facing, that l should be able to take it all in stride. That even when I am struggling with everything there shouldnt be an outward expression of this. I should be able to keep my composure, no matter how I am treated, how hard I am finding things, Im still expected to behave as if I were not suffering from any issues.

Its quarter past 3 now, Ive had like 2 hours sleep. Ive tried to go to bed a few times but I cant get comfortable and end up getting so frustrated that I get up again. Im getting really tired so Im going to have another go shortly.I keep dozing off at the table so it shouldnt be that hard for me to sleep. Apparently it is really hard. I went to bed and I couldnt get to sleep, if I did it was short lived. I slept longer at the table than I did in bed. I have no idea why, what the problem was.

Once again I feel like Mum doesnt care about me. Some time ago Dad was going to buy me a second hand car and I would pay him back. Mum wasnt keen on this idea and decided that I could use her car whenever I wanted. Id pay for fuel, Dad would continue to pay for the rest, same deal she had with my sister. Then I hit the kangaroo, the car got repaired and she has decided that she is going to start driving again. Fair enough, but what that means is if I need a car and she wants it to go out, I have to use Dads car, so I am going to go from one car to the other based on if she wants the car. So, I have no reliable means of transport for myself and Dad has put the money back into the loan. I will be having keep begging to borrow someones car to go to doctors appointments, even today Im using Mums car in the morning and then Dads later in the day. I keep saying that I feel trapt, I cant escape here, I cant move out on my own again, now I cant leave for any reason my parents dont approve of or without permission and its not like I can just grab a taxi or bus, there are none in this area.

I saw the Orthopaedic surgeon and it turns out I have Calcific Tendonitis. Ive got to have an MRI so he can see if its a surgery job etc. Basically, there is a buildup of calcium in the tendons. Its rare cause it has to be. I cant say Im overly suprised its something rare, something unusual. He seemed to be leaning towards surgery from the get go, but my weight would be an issue.

Ive been having these random movement, like a muscle will twitch and my arm will move, Ill drop a smoke, my neck will twitch and go instantly to the side, knees, back, you name it. Apparently, the ER should have told me to wean off the medication causing me issues, not to just stop. Doc has said to wait a few weeks and if still an issue then will revisit. Its really frustrating, it only really affects me when Im at rest, typing etc. Its also pretty painful as it irritates my spine.

My tongue has been really bad today, like I just havent been able to control the pain. Ive just gone all out with bonjela and sucked a difflam and the pain has reduced a bit, its kinda sore but Im hoping its not so bad now and I can lay down and get some sleep. I really tired, I didnt get a huge amount of sleep last night and today has been pretty busy. By not a huge amount I mean like 1 or 2 hours. Today has been an absolute write off, I had my appointments then I spent the afternoon trying to get some sleep, I think I managed an hour. I lay down and its like nothing happens, I just lay there and I get increasingly frustrated and I crack a wobbly and get out of bed and try again a bit later and repeat. The whole time I was falling asleep at the kitchen table.

I told my parents about my appointment outcomes and again, Im left wondering why the hell I did, I know that we all have our stuff, but I am having an ongoing anslaught of things going wrong. Like Mum, Dads and my sister havent had significant changes for a while, a long time. I have had one after the other. I reminded Mum that the 1/11 was my 2 year anniversary being sober (alcohol). Well done, was all I got. I must have said something more and she said she cant even her engagement date. Dad was more enthusiastic

[ClockFace]

I actually got a few hours sleep and its only 1 am. Im feeling pretty perked up at the moment so Ive put on a load of washing, which once its done ill hang up and then try and get some more sleep. I was so tired when I went to bed, I didnt have the energy for tea or anything so I just had something to eat. My tongue seems to have settled in comparrison to when I went to bed. I dont know what it is but of all the drinks I drink, the grape soda seems to be the most soothing one of the lot.

When I saw the doctor yesterday I talked to her about giving up smoking and the medcation to help do so. Ive talked about it to a GP in the past and they wouldnt prescribe it because of my mental health issues however with the change in diagnosis and I think my GP is really keen for me to give up and thinks that it would be more important than the risk associated and she said she she would. So, give it 7-10 days Ill stop smoking and I can put this dumb decision to be a smoker behind me.

Something that I found interesting yesterday afternoon. Mum did actually go for a drive, so hopefully she will soon start doing some more stuff for herself, anyhow she went to the chemist and she there was some medication for me there and they rang me to see if I wanted her to get it. I said yes then I spoke to Mum and said that there was a script on the front seat and could she get it filled, it was the give up smoking meds. Her first response was "isnt that expensive." no encouragement that I am trying to give up, I smoke a huge amount, its not good for me having cancer already, I get dry mouth enough without additional encouragement but mostly it cost my so much. smoking is expensive, I think if you can access stop smoking methods, it needs to be at a cost significantly less than buying smokes would be. I mean most of them cost around the same amount as smoking does, so the incentive to try that method isnt really there. At least with the prescription one its cheaper, hell the full course is less than one pack of smokes for me. Other methods Ive tried and looked into cost around the same.

I go to the same chemist, Ive been going there for years. It used to be good because it was on the way home from work but I rarely go into the office now days. Thankfully its only around 10 minutes from home but its in the opposite direction to where I go now days. But I have stuck with them, they have been good to me, Im looked after there, normally. However, about 6 or 8 months ago the pharmacist left to get married and a new pharmacist came. The new pharmacist is a really nice person, I really like her but all to often I am unable to get the medications I need, ones I get all the time on the first visit. I get that there will be the occasional time where a small chemist wont have a huge range and will have to order in but if you know I have certain medications each month, they should be in stock.  Anyhow, I know the owners wife, she has helped me out in the past and we get on really well. So, I didnt feel right just walking in one day and closing all my services with them and my account and jumping ship, so I sent her an email and explained what and why. The next business day I get a phone call from her husband and he was super apologetic and he really didnt want to lose my business, he credited my account $200. I was bit suprised, though I not suprised they didnt want to lose my business, out of pocket I spend like $500 - $600 a month there just on prescriptions, theres more on overcounter gear that I get as well.

On that note, I just wrote about it on the forum, Im starting to get to the point where Im going to have to start chosing what I get treated for and what I dont or put off. Ive spent $1650 in the last 10 days just on medically related expenses, about 1/2 my monthly income. Im just hemeraging money on medical costs and I dont know what to do about it. Ive been borrowing money from Dad but its a loan and at some point I have to start repaying that money. So, I think Im going to have to look at the economics of being sick. Al this money Ive spent on my back, my shoulder pain, the whole medication reactions and interactions, the diabetes and so on. I dont know what I could have not got teatment for, I dont know how to prioritise one issue over the other. I cant stop working towards my back getting resolved one way or the other, same goes for my shoulder. I cant do anything about the medication thing. I cant not do the stuff with my diabetes. The stuff to do with my mouth needs to be dealt with, I cant not have stuff to keep my mouth from being dry, deal with the pain and make sure I dont get infections. I have had to do stuff about getting my guts back in order and deal with the after affects of all the antibiotics.

This past 6-8 weeks has been far more challenging on the medical front than Ive experienced before, I was in hospital a fair bit, then I have been dealing with the fall out of adverse reactions to treatments. This put the a lot of the other things I have had to deal with behind a bit and they kinda swarmed when the hospitalisation finished. Some stuff has gone into overdrive because of my hospitalisation, well the reason for it. So medical costs have been up, the frustrating thing is that with whats happening its unlikely that they will come down soon. The diabetes puts a spin on treatment and recovery from almost freaking everything as it turns out, so I have to be prepared for that, so does the doctors. Then add the reoccuring cellulitis, and its another level concern for infection etc. Im not overly overly preoccupied with infection, like Ive never been a person that needs to put a bandaid on everything, etc. When a boil bursts, they often leave behind crators, I know I should be putting something over them until they heal but I never do. But with the diabetes these things I should probably start paying more attention to. Its not like there has been this diabetes switch that has all the sudden been flicked, but Im aware of it not so I should be doing what I can to treat and mitigate any potential risks I can.

Its like my my spinal pain, I take all my different pain medications, when they fall due or as they are needed. But just because I have pain medication doesnt mean I do things to aggrivate my back and then just take extra medication. I mean I cant do that, I can only take so much pain medication and my based amount is enough to make me nervous. so the best I can do is mitigate. Sometimes Im more wary than I should be but in general I have a pretty sound appoach to it.

Im a bit lost as to where Im up to with my writing, I have no idea where I actually stopped and started something else. I came across the blue knot website again and actually looked into it this time. I found the part that I would fall under and sent an email basically looking for more information. I wrote to them about my past the things that have been diagnosed as causing the Complex PTSD and stuff that I recon contributes to it. It took like 12 hours to write because as soon as I started to write it I started to have issues with staying awake. Like it wasnt dozing off, I was flat out falling asleep, like I just switched off and then Id come back again. Sometimes for a second or two sometimes for 1/2 an hour. When I fell asleep, I repeatedly press a digit which Id have to undo later before I started writing again, but most the time Id fall asleep during that too. Then last night for some reason, I deleted everything a number of times in such a way that I couldnt retrieve it. I had to go to bed on a number of occasssions and sleep for an hour or so. I did a little looking into it and it sounds like I could have narcolepsy.

I also had a really bad episode of the wonky feeling in my head. I realised that it wasnt my head, it was my eyes. When I moved my eyes it was like the world dropped out from under me. I would feel a bit dizzy and like I wasnt able to get my balance. Looking into this too I actually came across Oscillopsia which appears to be the closest thing I have come across that reflects how I feel.

Im not a fan of Dr Google but so far no one else has come up with any other thoughts as to what is going on, so I think its definately worth me having a look and giving some thoughts, at least it would give more of an indication as to how I feel, the symptoms Im experiencing. Especially with the eye movement thing, its really hard to describe what Im experiencing.

I started doing protien shakes and meal replacement shakes this morning. The coffee one isnt bad, the chocolate one is tolerable but its not the nicest thing Ive had. That said, it is absolutly packed full of vitamins & minerals plus it has probiotics. Its not cheap but I recon I can stop the multivitamines and probiotics I get seperately so Im going to stop the individual multivitamins and probiotics and just bank on the meal replacement. The other thing with what I have gotten is that unlike the stuff Mum buys (which is out of date anyhow) is its like 33% sugar, my stuff is sugar free, which is important given the whole diabetes thing.

[ClockFace]

Mum and I talked today, I went up to see how she was and somehow we got on the topic of female periods. My sister becomes really cruel and horrible when she has hers and I have never understood why she was allowed to, why it was acceptable that this happened yet when I have an issue similar, as a result of my back, its the same but as an example. None of that went down well, she treats it like its off limits, like its something special and that while she says its not the case and my sister doesnt get to speak as she wants. Mum asked how I know my sister doesnt get told off and  I said she always knows when Ive been told off, its not the same for me. Thinking about it, if she is getting told of its clearly not working because she hasnt/isnt changing.

There was a couple things that interested me, she hammers on about how bad of a father Dad was. He wasnt great but that all been said he did as best he could and we wouldnt have had what little we did have, but him spendiing more time with us would habe been nice too. But the slightest hint that I dont think she was ideal, that she treated me differently to my sister, etc and there is a massive attitude change.

There was more to it but it seems everytime I think about writing it I start falling asleep, Ive been in bed long enough this afternoon and dont feel like being in bed even more. Apparently I didnt get on top of it quickly enough or it has nothing to do with it because I have spent  quite a bit of asleep at the table. I ended up going back to bed and sleeping for a few more hours. The whole discussion with Mum Ive pretty much put down too that she is never going to understand what Im saying. She will never appreciate the hypocrisy of what she says and does between my sister and I. So, wasting my time on it, is just that, wasting my time.

Its a bit after 4am, I think Im going to go get some more sleep. The amount that Ive had in the past couple days is more than I had in a month preceeding it. Ill be sleepy this afternoon after my procedure as well. I dont know how confident I am about this procedure doing anything, but Im running out of options. I dont think there is much more that can be done other than this, which isnt the best feeling. I mean losing weight will help but thats a long term thing and made harder by not being able to move much.

I woke up at what I thought was 7:30am, but turned out to be 6am. I ended up just dozing at my tablet again. I dont know whats wrong with me tonight, Im so tired. Its 7am, I dont have to get going until 8am so Im going to lay down for another hour.

I ended up doing a couple of things and decided not to go and lay down. I feel pretty sore all over today, my legs ache really badly and my back does too. Ive taken my pain meds, so I hope they calm things down soon. My mouth hurts a lot today, I think it was all the talking with Mum yesterday.

Im home from my procedure. I was in a fair bit of pain when I came too, Its lessened after some strong pain relief but its still sore. Its funny the leaflet you gey says OTC pain killers should be enough, it never is. If your just treating on needle going in, maybe but I had 6 lots and it always aggrivates my issue they are trying to treat.

Turns out the reduction in pain didnt last long and I ended up with a trip to ER in the back of an ambulance. I was pounded with a heap of different strong, really strong and I didnt know it was legal now pain meds before we even left the drive way, which I am very thankful for. I was in a lot of pain, 10/10 but I wasnt moaning, groaning, crying, I was quite, like really quite, monotone etc. I was in so much pain, that everything just I dunno, it was overwhelming and in being so overwhelming I retreated. Its more often my regular reaction to my pain, I retreat. My sister and Mum are much more vocal, cry, animated. Dad and I are the opposite, I often think this is why my pain is taken less seriously by Mum and my sister because they dont see the same outward expression of pain as they portray. Odd thing is I see the outward experssion that my sister and Mum go on with as attention seeking, carry on. Being irrational, not understanding exactly what it is your experiencing, so that can be relayed properly. Yelling and screaming at people over anything and everything, none of it helps. No one needs to be reminded constantly that you're in pain, you're better served being calm, paying attention to what your feelings and experiences are so you can relay them fully and precisely, giving clear instruction as to what you need and not having 3 people off doing different things to acomplish the same goal.

In the end I was turfed from hospital with more pain killers but they cant give me anything to take home. Its frustrating, because some people abused it everyone has to suffer as a result. I start off in pain, shit like this puts me in more pain. My normal pain medications is pretty well at the top of what can be prescribed, well that and still be functional. So something like this comes along and there is so little that can be done, but unknowingly to me, they cant even provide enough pain meds to get you to your next doctors appointment. I always thought if I ran out before I got to my GP I could go to ER and get enough to get me through. What bugs me the most about it all, is I asked and I got treated like I was a drug seeker, once I was advised the rules I was ok. Well, I was annoyed but I understood. Its the worst thing, because some people decided to abuse the medication, anytime I talk about it, look at increases in dose or frequency, etc I am subjected to the drug seeker stare or I get the talk etc. all before they hear my reasons why, once you're on some medications like some Im on, the dose your on when you start is almost a forever dose and any talk of increasing it is indicitive of dependancy or abuse not a worsening condition. I have been fortunate in this respsect that my doctors that I see regularly see me before they see the medication, but ER, different GP's new specialists, its different and you have to deal with the bad guy aspect of this medication. On the flip side those who caused all this, abused it etc. they have programs, support systems, medication to help come off this medication etc. If we mess up and run out before seeing out GP for what ever reason, we are effectively on our own until we can see our GP.

Im getting really tired, Im ready for bed. I finally had something to eat and I didnt end up eating much, Ive felt this weird intense reflux, Ive been using Gaviscone to help but it hasnt much, got back onto the iced coffee for some relief again not much help. I ate and it took so little for me to want to throwup. I had considered having a shower, but Im not going to, its time to sleep.

On my way to bed, I popped into Mums room, I had a growth under my arm which is really annoying, I wanted to know if it was a boil, if it waas poppable etc. Anyhow its quarter past 5 in the morning now. Im going to go to bed for a few hours shortly.

[ClockFace]

I laid down and couldnt find a spot that was at all comfortable. Moving around trying to find a spot wasnt on the cards either. I didnt even last an hour in bed before I gave up and got back up again. Ive taken the last of pain medication that I have and Ive taken my 12 hourly medications but the pain is still quite intense. Its not off the scale but I do wonder how I will make it through to seeing the GP.

I saw the GP who agreed to provide the pain killers I needed at the strength I wanted, enough to get me to my normal GP and hopefully enough to to get over this pain Im currently dealing with. I got her to check this rash I developed a few days ago and she said she thinks its eczema, something that both my Dad and sister have and something I have tried to avoid ever having to deal with it, but now i have to dabble with it.

I had my appointment with Angliclare suicide prevention support,  it was a good session, I caught her up on most stuff Im dealing with and some of what Im dealng with at home. It was nice to hear someone say that she understood why I had resentment and felt the way I did given the diferences in how my sister and I are treated. We talked about how I felt trapt and she understood that feeling. The meeting was supposed to go for an hour but an hour and a halft later I looked at the clock, she had just let me go. I dont know if I made sense or anything but being able to just talk, with no concern about the time, the topic etc. It was what I needed and it was refreshing. We spoke about a subject that I have touched on a few times, I was very intelligent, like points shy of genius status as a child. When I had the brief psychotic episode that wa lost, Im not a moron Im just not special anymore. As a young person, that was all I had, that was all that set me apart. I wasnt good looking, athletic, strong etc, but in the crowd of my peers I was just seriously intelligent. That didnt sit well with the other kids but it was all I had, it was all that made me special and untique and that was suddenly ripped away from me, thinking about that, there is probably a large amount of trauma that has never been addressed in that period of time. This was talked about in the context of changing who I am, which I have done so many times before, generally forced upon me, so much so that I see little if any of the boy I was within the man Ive become. I was so highly regarded as a child, those I spent time with, were much older but in many ways treated me as more of an equal due to my maturity and intelligence. Children my own age didnt have any time for me but that didnt matter to me because they were inelligently inferior to me. But the person I have become is less than those that I looked down upon for all those years.

I saw my Dietitian today, Im on the right track, I should start seeing some weight reduction if i keep to it. It was a quick appointment, Im not back there for a month.

When I got home I did a few emails and laid down for a bit over an hour. I got up and tried to do a few things but primarily dosed on and off. Im gonna go ack to bed in a minute. Im exhusted. Ive been trying to stop smoking and I am on a cease medication and without trying at all, I have reduced how much Im smoking. What I have on hand is it. Then I will stop

Jumping back a bit, I remember as a young person thinking that if I were to lose my intelligence, I would end myself. I had forgotten about this. I valued my intelligence so much, so much moe than my actual life. I didnt see value in my life without my intelligency in such a young age. To a degree, I have proven this as correct

[ClockFace]

Well that was a fun night, Id be awake, then Id sleep at the table, then Id go to bed for a while and repeat. Eventually I got going, I went into town go a few things and when I got home one of the dogs had gotten onto the table and pulled down my rubbish bag and trashed the joint. Less than happy was I. Ive cleaned that up, which was really painful. Im going to have a shower in a minute. Ive got the dentist in the morning and MRI in the afternoon. Im playing with the idea of getting my hair cut inbetween, Im pretty desperate to get it done but I dont really have the energy to be bothered.

I didnt lock up the back of the house last night, not that I was in bed for long when I was but still completely forgot. Didnt realise until I got home from the servo and went to open up for them.

My mind is a bit blank today, there really isnt much going on upstairs. Its very much a practical mindset today, well at the moment. I have this to do, this to do and then that and none of it needs any real thought, any emotional sense. Its like that part of me has taken a nap. Im a bit focused on the amount of pain Im in and the amount Im going to be in with what I have to do today. Considering when I will have a nap, because I will definately want that. The worse thing with the sleeping at the table is I dont have my machine on, so the sleep isnt really sleep, it kinda undoes the sleep I had in the bed earlier.

Its the following day, yesterday was a fair write off. I went to the dentist and actually came out okish, I got a couple more appointments but they were planned, given my history with dentists Im happily suprised. The dentist Im seeing now is awesome, both dentists Ive seen where I go are great but Im seeing a guy now and he is so tall, his hands are massive. To look at him you would think he wouldnt be able to be a dentist, you would think there is no way his hands could get in your mouth to do his work. But somehow he manages and reasonably comfortably too. 

I finally had a hair cut after the dentist, I was looking pretty terrible. I literally sat down, told the hairdresser what I wanted and pretty well fell asleep. I woke up a while later and asked her to do my eyebrows and promptly fell back asleep. My sleep is really difficult to tie down, I cant sleep, then I struggle to stay awake.

I then had my MRI in the afternoon, I seriously just fit in the thing, I wasnt embarassed but I feel like I should have been. Like it shouldnt have been so touch and go that I would actually fit, it shouldnt have been playing with my arms and where they were so that I did fit. If I were to put on slightly more weight I wouldnt be able to fit at all, I would need a special larger machine, maybe a zoo machine and that would be seriously embarrassing.

Ive been getting quite focused on my needs in regards to the diabetes, I keep thinking Im doing ok and then I scratch a little deeper and not so much. I look at a pre-made meal and its high protein, good cals and when you look a little deeper the carbs, high sugar. Overnight I sat down and researched a number of pre-made meals that actually fit the bill. I sat down and started to put together a list of foods and drinks that I like and their important stats focusing predominately on foods that meet the diabetic requirements, there is a couple of foods/drinks that are out of range but they are for rare occurances.

I missed my cardiologist phone call a couple times, its hard, he didnt give an actual time and the calls I got were coming through as potentially scams and were blocked by my phone. I looked up the number and it was for a horse harnessing Victoria but I decided to actually call the number and it was the professors rooms, but it was 4:45pm at that point so unsuprisingly he didnt call back, so Im assuming that I will get a call on Monday now.

I have been in quite a bit of pain today, which is getting worse. I laid down this afternoon around 2 and slept for a few hours and did the same around 5:30pm. Im so very tired. I woke up last around quarter past 7 and still Im struggling to stay awake, the only reason Im awake is because I moved and I was in so much pain when I woke up. Its still incredibly painful, its not as bad sitting or laying down, moving causes so much pain, like walking etc. Im moving really slowly today, very deliberately and only when really required.

Im so sick of these sleeping issues, like today I have struggled to stay awake since 1pm and thats kinda common that Im finding it difficult to stay awake day and night. I just seem to be constantly tired and no matter what I do I cant sleep enough, but even then I cant stay asleep when I am asleep. Almost every time, I wake up around 2 hours after going to sleep. Rarely do I sleep longer than that, which I think would be the basis of my problem, being that I am not going through REM cycles properly. But what gets me is that regularly I am unable to sleep for days at a time, like Ill get a couple hours, daily for weeks at a time and thats it. However, if I start writing something about my childhood, something that gets me emotionally and I fall asleep over and over, last time it took 10 hours of this to write what I wanted to.

It got to 41 degrees today apparently, whats strange is that I have spent most the afternoon, in bed with my quilt over me and when I was out of bed I was cool or cold. At one point I even had a long sleeve shirt on because I was feeling the cold so much. I dont have a tempreture but every time Ive checked its been above 37 degrees.

Its 9pm and I was going to go back to bed but Im going to try and have something to eat first, then Ill go to bed I think. Im actually not very hungry but I feel like I should eat something, Im having shakes during the day so its probably a good idea that I chew on something solid. I managed a couple pieces of chicken but that was it. Im having a smoke and then going to bed for a while.

[ClockFace]

I was in bed quite a bit last night, I slept reasonably well I think. Im in a lot of pain when I woke up, Ive got another hour until I take more pain relief. The tempreture has dropped from 41 degrees yesterday to a max of 20 today, Im expecting that that has a fair bit to do with how much pain Im in. My legs and arms are really sore, they ache incredibly badly. Im a bit swollen today, more than I have been recently.

Ive got the heater on, Dad just came down and winged that I have the heater on. He cant seem to understand that Im still sick, that I still get tempretures. He decided that going outside and leaving the back door open was a smart idea so the tempreture has dropped inside quite a bit. I dont know why he goes on about me and the heater or cooler etc. I turn it off when Im at a good tempreture.

I dont know why but there seems to always be a reason where Dad is asked to do something unusual with a doctor, like call and ask for them to just call back without an appointment or even just making an appointment and next thing he is getting me to do it because of this or that, today he has finally got his phone to charge, it hasnt been charging lately. He has had no end of trouble with that phone, I told him to get a Samsung and he came home with a Pixel. There was no Samsungs in stock or something, then why wouldnt you wait until there is one or go elsewhere, no you listen to the twit behind the counter and get sold the cheaper one, which suited him fine, he didnt want to spend Samsung money, but he wanted Samsung quality. Now it has issues all the time and it ends up being him winging to me. He needed to get my sisters doctor to call back, ring, put it on speaker and away you go, no I need to do it for him. I tell them to call him back, no point calling Mum and I dont want to deal with it. Every time I deal with something he was supposed to I dont get all the information and it ends up some kinda shit show, added to which I have said that I need to not be dealing with all that kinda stuff. I have enough appointments and all that of my own to make and deal with. I speak to doctors enough, that whole world I deal with enough on my own, I dont need to participate in other peoples. Added to which, I have been in a lot more pain than normal for the past few days, since the procedure. I never do well when the pain increases, even less so when its after a procedure that is supposed to reduce my pain.

It seems thats something people are missing, I had 2 procedures earlier this year that caused me to be in more pain than I was before and now I have had another, what seems to be a last ditch effort and Im in more pain again and Im worried that Im going to remain that way. So, Im sorry if Im a bit self focused at the moment but Im sure you can deal with it, its a phone call.

I went back to bed for a while and slept, I got up and promptly fell asleep in front of my tablet. Im well in minds to go back to bed now and sleep again. Im so tired, Im exhusted, I cant seem to get enough sleep no matter how I try.

I just got told by my Mum that family friends are coming up tomorrow afternoon, no asking me if Im up for it or anything, just they are coming, make way. I very clearly showed on my face and I must have groaned, I got what and I didnt hold back, I let Mum know what I think. I mean, it means I have to pack all my stuff up, Ill have to try and appear to be in less pain than I am, deal with how loud and annoying they are. I love them, but they are a lot much and right at the moment Im not up for dealing with it, so that will mean I will have to hide out in Mums or my room, I wont be able to do what Ive been doing, the stuff Im doing to help deal with the pain Im in. They are going on about the amount of pain my sister is in based on pain medication, I wish they would look at the same for me. Im in and out of bed as well, I dont particularly want people to see me dealing with this much pain or having to go to bed every few hours. I dont care if they have known me since I was born, its not the same. Mum got grumpy with all of it, like Ive told her she cant do something, not that I cant deal with something. "I cant keep telling people no" she said, she did for a really long time, like years, when it was her. But she doesnt have to say no, meet at their place or go out and have a meal together, it doesnt have to be here. Not to mention, I would have to put all my stuff on the kitchen table somewhere and then put it back, all while in a shit tonne of pain. No thought to that was given, clearly.

There is no point talking to Dad, in everything Ive spoken to him about, he hasnt once gone to Mum and told her anything Ive said, its not even having my back, though that would be nice, its just let her know what Ive been saying. Apparently, she was on about him tidying up the kitchen and shit tomorrow morning in preparation for them coming, he plans on going to Church. When she said something about it he said that he wasnt planning to. Its all on her whim, like she decides something and everyone else is supposed to just work around it, just deal with it and make it happen for her because she has decided that something is happening. She really doesnt realise how selfish she is and my sister follows suit. Doing other stuff to help people, particularly stuff people havent asked for, doesnt mean you can rule in areas you want to. I mean its just as selfish to go buy clothes for people that they didnt ask for, then months later command the money be paid back. But you cant do stuff like that and then later say I did this so you do that, thats just as selfish, its so controlling.

She really has to realise and not just lip service it, we are 4 individuals living together. She cant make decisions about people coming over without engaging others, its not fair. I only just had a spinal procedure less than a week ago, I just might not be up for it. Its not just pain Im dealing with at the moment, the sleep thing, which is probably a result of pain. Pain makes you tired, really tired, so I cant say its overly suprising that Im sleeping a lot more. The constipation is horrific, Im taking 2 different types of laxitive and still I cant make it a regular occurance. This thing with my head or ears as it may well be, Ive been really dizzy, wonky etc since like 5:40pm. I have a horribly upset stomach most the time, so I also feel humongous and I really dont want people seeing me when I feel that big. I know Im big, like Im not hiding that but when I feel like I dunno, that I dont fit in any of my clothing, that I take up all available space when walking around, giving them a hug would just go to prove how massive I am because they cant get their arms around me, they cant even get face to face with me. The feeling that I repulse people who have known me from birth, that they are disgusted by me. Thats before they even see my skin beneath my clothes, all the acne and boils. Im sorry, no on top of being in immense pain, pain that is not being managed by the huge amount of pain medication I am taking, I dont want to deal with people who while I love them, are loud, in your face, frustratingly annoying, people who you can say the most basic thing too and it just make absoultly no sense to them. Conversations go around and around, there is rarely any substance to anything. They love though, boy do they love. They love me and accept me and I always know thats the case when I see them.

I think thats the thing thats frustrating me with talking to Dad, there is no substance, no point to it, its all fluff and hot air, though talking to Mum isnt much different. I dont know if its that she doesnt pay attention or she cant relate what you're saying about one thing to something different. Like I talk to her about so much and she cant relate that to talking to me about family friends coming up or why I would be ticked off that, without any consultation or consideration for me they are now coming up. For some reason Mum can work out that if she did something it would make my sister feel a certain way, she expects that my Dad and I think the same way, but when it comes to me she cant see how things she does might affect me, its like nothing should affect me because it doesnt affect her or more so what I think, her wants are more important than how they would affect me. My sister however has had such a rough life though she should matter, apparently my life just hasnt been shit enough.

Both Mum and Dad do it and they both complain about each other, but they believe I should be living a certain way, doing certain things, etc. Like, the whole air conditioner thing, Im cold, I put it on. Dad doesnt think its cold enough or I just have a tempreture etc. It doesnt suit Dad right now so it shouldnt suit me, if it was a once off I wouldnt make a fuss, but its so often and its about so many things. Its not just saying that he has a problem, he goes a step further and leaves a door outside open or something, something to rub it in. Mum just hounds you until you do as she wants, she hounds in a variety of ways. Mum just said that Dad wasnt happy that I wasnt happy that the family friends were coming, they are just coming for a coffee apparently, why they cant do that at a cafe I kinda get but why not on this occassion. I said to Mum more of why I wasnt keen, but I also said that it wasnt like I was saying they cant. For some reason they never care what I think about stuff until I say something and then its like Im saying no, like they would listen anyhow.

I woke up at like 4am and decided that Id have something to eat, I managed a bit of chicken but my stomach really didnt like it, I dont know what it is, its not that I feel sick but its not a great feeling.

Ive woken up after what was a pretty decent sleep for me. Dads cleaning for these people coming today. He isnt in the best of moods. My pain is intense, its really bad this morning. Im maxed out on pain meds but Im not bad enough to go to hospital. Im so uncomfortable, I desperately need to do a poo.

Im so tied again, Im going back to bed shortly. Ill clean off my stuff from the table and I think that will be it.

I woke up and I find Dad outside on the wood chipper. Turns out they arent coming, its too late in the day for them. I then find out that Mum isnt suprised, they never come if she changes it to a Sunday, especially a Sunday afternoon. They can never fit it into their plans, they have issues with Sundays because one or both are getting ready for the work week ahead. Not only that Dad likes to go to Church on Sundays. Its not like she has a heavy social and outing load that another day of the week couldnt be picked, Dads retired so thats not a consideration. For some reason, she decides that Sunday is the only day to chose. She used to do the same thing to me, she would come and visit or plan to visit when she knew full well, that I had work or Church stuff at the same time. I dont understand why she does it, she has this attitude that the reasons people have, the normal tasks etc are not important or their routines should just be changed for her.

She is so dismissive of other peoples ways, like my uncle liked to have Sunday's clear to completly rest before he started work for the week. She acts like I dunno, he shouldnt, like it should be optional. He would do stuff in preparation for his work week, I dont know what but it was his way of doing things, his way of living his life and Mum seemed to have an issue with it. Thats just an example though, she does it a lot. Other people are fine to have a way about them, so long as it meets with Mums ok and approval and my sister is much the same, this is the whole, I dont understand thing comes in. Its less about not understanding, its about approval. I have a greater number of quirks than most I would think, things I do and dont do because off who I am and because of my mental health. Its not all mental health, some of it, a lot of it is just because of who a person is and learned behaviour. So long as they arent harmful to you or other then there isnt an issue. By harmful, its more than others not liking it or not understanding it, it affecting other peoples mental health is an area to be careful of too though. You have to balance your mental health and theirs but you have to balance what is reasonable, people cant just use that it will affect their mental health as a method to manipulate and control others.

It really bugs me, I asked Dad a few days ago if I could make sure there was $250 on the black card for me, he said yes but then didnt put any money on it, so when I went to do some shopping there was no money and Im standing there like a freaking moron, thankfully I had had some refunded from Medicare and was able to use that but that meant that I didnt have the money to pay for protein powders. I said about it and after some back and forward he said ok again and then started making tea. It would really be helpful if he did make the transfer, I want to get some more smokes and some iced coffee but my head is starting to have issues again so I need to do it soon. Not to mention I keep falling asleep, like Im up for an hour or so, so maybe you could do what you said you would a couple days ago, now. If he had done it to my sister boy would there be hell to pay.

When he came inside he was straight off about the blasted air conditioner, I got to turn it down or he's gonna melt. Its boiling blah blah blah. I turned to him and said he has been outside working so he is hot, Im inside, Im not moving, Im having fevers, etc. He has to start to get his head around it. He also has to stop looking at the air conditionair tempreture and determine this is how hot it is inside, its not. The tempreture doesnt actually make it to that inside the house. He has to also understand that I am still sick, Im still having fevers and that so its on and off, it can be cold and I have the cooler on.

Im pretty sick of being constipated so I have just downed some lactolose and see if that works, I went earlier but it was really hard work. Dad keeps offering me food (tea) but Ive said no. One he doesnt realise how not diabetic friendly what he is making is, like he has made a reasonably healthy meal but its sausages in bread with mashed potatoes and a bit of veg I think. Carbs wise that would be huge, in comparrison protein would be pretty low, so while it is fine for the rest of the family but for me thats not something Im going to be able to eat. Thats why I like the pre-made meals, other than they are simple for me to heat and eat, I know exactly how much protein, carbs, fat and sugar is in the meal. I can plan for that, which Im starting to do, and work to maintain my BSL etc. With a home cooked meal, I cant tell, I can assume, but nothing certain or close.

I looked at my diary for the week and Monday/Tuesday is actually clear, which is Im pretty happy about, I like the idea of a couple more days without medical appointments. Its been really full on for a while now, its a busy last few days of the week but a couple days of nothing, mostly nothing anyhow, will be a wonderful break.

You know you ask him to transfer money etc and he doesnt, he screws around and forgets and I end up at the shops with no money because he hasnt done as he said he would and I cant then get ahold of him so I ring Mum and have to borrow the money from Mum, which is a deal. Well if you had done what you said you would, when you said you would then it wouldnt be an issue. But no its my fault because again, somehow I should be able to manage all these medical expenses, all the medical expenses that have been on my plate over the years but the latest ones in particular. I should just have the money to deal with it, I should just stop smoking to help deal with it, I should be back at work while I deal with it. The number of ways that I have failed in his eyes because of the medical stuff alone is pretty overwhelming. They talk a big game about how they understand etc but their actions and the ways about them and the stuff they say they dont realise connects tells a very different story.

I just setup and made an order through wollies and OMG so much easier that Coles, Ive given Coles enough chances, Im done with them. I wish Woolies had a wider range in the diabetic suitable ready made meals side of things. Im not 100% sure what Ill do in that regard just yet,not that I care that much about what Im eating most the time. Woolies has a couple things Coles doesnt that I really want so Woolies wins, the fact I can just order from them really pushes them over the edge.

I went down to have a shower, Mum was on about how recently she was really getting scared about my weight that everytime I came in her room it looked like I had  put on weight. I told her that I was, I mean I was gaining and losing kgs of fluid, heaps of it and I was bloating a huge amount so it wasnt that I was getting heavier so much as I was unwell. But no, she wont get her head around that. Ive lost a couple kg in a couple days and Im not really trying, I mean Im making better choices but Im not working out heaps or something. I just love how she thinks telling someone who is struggling with their weight, with how they feel about their body etc that everytime they saw them they looked fatter. I didnt need that, everytime I talk about my weight and how shit it makes me feel, she has to come along and encourage it and make me feel worse than I did.

I got out of the shower and there is a huge ho har on about how the nurses keep talking to my sister about going home tomorrow, which as far as they know is the plan. We have independantly come up with the idea of seeing if we can get a bed in a rehab place for my sister for a week. She has issues with her legs after surgery. For some reason it wasnt organised before she went in, it would have made sense that she organise that before surgery given what happens, but that didnt happen. So, now last minute they want to organise something. Well, the nurses dont know that, so getting the shits up with them is completely unfair. But now my sister is carrying on and Mum is on about her doing this or that or self harming etc. the whole would has to stop to make sure that instead of having a rational conversation and a quiet phone call to the nurses. No we basically encourage the idea, my sisters worst side, we rev that up. All Mum had to say is that the nurses dont know, we will ring and ask them to stop talking about it.

Again Mum told Dad to ring the hospital, gave him the instructions of what to say etc. I dont know why she does this, like why doesnt she ring herself, that way the right message gets through. Is a common issue that Dad is told what to say etc and often enough he gets it wrong, which isnt entirely his fault, he is an individual, he has his own drives which will come out in what he says, he isnt Mums spokes person, as much as she wants him to be. God those two are screwed up. From my view Mum especially.

[ClockFace]

Im running out of things to watch on my media streaming services and I have pretty much all of them. Im watching some more sub-C stuff, some of it is good but a lot of its really not.

Im up for less and less time and that includes at night. Ive been up for a while at the moment, but I have slept at the table for a lot of it. Im going to go back to bed, I keep sleeping at the table so why be awake, added to which its really cold. So I just kept falling asleep at the table, its not so cold now and Im kinda awake now. Im 1/2 in mind to have something to eat, I havent had a meal in over a day, the constipation is making me feel so full and backed up that eating isnt an option, Im even struggling a bit with drinking. Im so full of wind this morning, like I keep farting a lot, for me anyhow. I feel like there has been a massive increase of pressure inside me, like Im ready to blow. I want to poo, not fart. I went to bed for a bit, I didnt sleep long though. My stomach is is really full at the moment, its really uncomfortable.

The pain seemed better for a while overnight, but Ive woken up in a lot of pain again, I just made a coffee, a freaking coffee and Im in so much pain its stupid.

I realised that the airconditioner was basically blowing on the back wall of the kitchen, so when Dad walked in he gets thumped with hot air. I looked up the remote control manual and worked out how to change the verticle direction of the air coming out of the airconditioner. Now its blowing down on the table, which is so much better.

I ate an apple and Im incredibly full, I cant believe all these laxatives arent doing anything. If I dont get some real action soon its gonna be another ER trip, which I really dont want to do.

Im tired again, Im trying to stay up and finish my. Once I have though, Ill go back to bed and sleep some more, Im struggling with it more today than I feel I have previously. I dont have much in the way of motivation either today. It seems early to say that but Ive been up 1/2 the night.

I went back to bed again, Ive woken up with my head spining so bad, I really cant move my eyes or anything, its really bad this morning. Its not as bad if Im sitting. It took a lot for me to wake up and get going because of it. Im trying to get my head together and Dad is making a hell of a racket unpacking and packing the dishwasher, though that said, I feel like the keeys on the keyboard are really loud. He was yabbering on about shit the whole time as well and all I wanted him to do was be quiet.

My shake mixer comes today, Im just sorta waiting for it to come so I can go pick it up. I want it to hurry up, Ill put on thongs to go into town but I want to put on socks, if I can ASAP.

I got a call from a random post office saying my parcel had been delievered there and I could pick up from there or they could redirect. I chose to go get it, it wasnt that far away. My trip was really odd, I felt like I was in a dream state, I still do. I Struggled more and more the longer I was driving. I felt really slow, like what I was seeing was processing slowly. I still do. I feel like Im ok when I talk etc, I dont know its really weird. When I got home and drove in the drive way I actually thought that I might have been drugged. My tempreture was 34 when I got home, since then its been as high as 36.8 but now its sitting in the mid 35's. But its bouncing all over the place.

I went back to bed, the way I was feeling there wasnt much more I could do. Ive woken up and feel a lot more myself. I have a reminder about a doctors appointment tomorrow, its a long one so I can do the work letter but now I have to talk to Dad about money again. Dad has obviously gone to see my sister, Im not sure if Mum went, I doubt it. Before I went to bed I went and got the parcel so I have the mixer, it looks the part, it is much easier to read the volume amount than the shaker bottles we have. I think Ill end up getting a second one.

I was up for like 30min and I was almost ready for bed again, so much so I dosed off in my chair and woke up with start. All Ive done is doze on and off for the last hour or so, I have no idea what going on in the show Im watching, yet again. I cant get over or understand how tired I am of late.

I placed my first order with Woolies last night and was really pleasently suprised how good the experience was, but given the experience with Coles its not hard to have a good one with Woolies. Simple things like being able to have more than one card stored on your profile is awesome but ofcourse just being able to process the payment is a real step forward. But the process of delivery is a lot better so far. So like Coles you select a delivery slot, they are 3 or 5 hours by memory where coles are 4 or 6, the morning of you get an email with a estimated delivery time, a 1 hour period where your order should arrive, the same for both. But a stand out for Woolies, I just got notified that my delievery was next, which I thought was fantastic. Add to that, he actually asked where I wanted them put and I asked him to bring the drinks inside and he was ok with that, like it wasnt a worry at all. That delivery is exactly what I expected to have happened from the start. The difference between how Coles does it and Woolies is massive, I can see why there is the difference in price, that said, its only a difference in price on an individual purchase, as a monthly subscription Woolies is cheaper I think but is certainly better value for Money.

I woke up this morning and the feeling in my head was incredibly bad, just before 5pm it started up again. So today it stopped around 11 and started again before 5pm meaning Ive had 6 hours where I felt normal. Ive got like 6 weeks until I see the ENT, I hope I dont continue to lose time from my day to this in the meantime.

I went down to Mum to give her a bottle of Blackcurrent Powerade Zero, she wanted to try it and she wanted to try the protein shake Im using so I made one and brought it down to her. She then goes on about how she would like it like this and that, she started telling me about some thing, some tube thing I could put it in and freeze it she was telling me where she thinks they are and I just looked at her and said I wasnt going to be looking. Just because she thinks something is a good idea or she thinks she wants something to happen, that she can just rabbit off where stuff is, she doesnt ask she just talks around it. I wasnt in the mood for it at all today.

They are again looking for a tumor, this time in my head. For some reason Im a little more nervous about it this time, maybe because it is in the head. Even if its benign it would still mean surgery, in my head. Im a bit freaked out I think because Ive already lost so much of my mental self, so much of my intelligence and Im worried if it did come to it, what would happen if they had to dig into my head. I know Im getting ahead of myself but with my luck and history lately a brain tumor wouldnt be out of the question and its a fear of mine, I imagine many peoples, having someone dig inside my noggen. It really doesnt thrill me.

I keep a pretty close eye on my medical stats, like blood pressure, temp, HR, BSL and oxygen level. With all things that are wrong with me its reasonably important to monitor what I can, it might not be used by doctors etc, particularly ER but it gives a good indication that something is wrong and what that might be, its information that Ambos etc normally wouldnt have until they get there and run the tests themselves. Also, I feel pretty aweful so often that its hard for me to distinguish the normal feeling aweful and there is a potential issue feeling aweful. Anyhow, today and yesterday my blood pressure has been lower than normal, typically it sits around 140/70 but its around the 120/60 all the sudden. I am drinking better fluids, far less iced coffee and more water and hydration drinks so maybe thats why its a fair bit lower.

I went and had a shower, I got out and we were talking, I told her about my parcel and how it was sent to the wrong town. Then there was this whole stupid conversation about where the 2 or 3 buldings that are in the town were situated. WTF anyone cares but thats where Mum took the conversation. I had said where a building was, and then confirmed it and then confirmed it again in different ways. Next Mum is telling me that I said it was on the other side, but it wasnt like "I thought you ment?" it was"You said" its the acusational. I said that I hadnt, I mean the whole time I had said where the shop was, I was there today FFS, what benefit would it serve me to tell her that its on both sides of the road? She carried on about how this was said and that was said, she said she had something that she hadnt even said, but I ended up flipping out a bit. Everytime there is a misunderstanding, she gets confused, even if I did make a mistake she has to really drive it home that I screwed up, that Im wrong, she has to prove just how wrong I am. Like its not enough for her to say that we must have gotten confused, she has to ensure that I know that I am an absolute moron and just how worthless I am. I dont get it, I mean its not even over something important, its not a life and death situation, the world, her world wont crumble because of there being confusion as to what side of the road the building was on but the way she treats me in that situation makes a massive impact on me. To me its things like that, little insignificant things and how they are treated that really show what people think. If its something more important, a bigger issue then people pay more attention. Small things people are on auto pilot. To add to it, ok I kinda got grumpy and didnt handle it great, but when I told Mum that she always did this, she denied it and I continued she threw her hands up and put her head in her hands. Again, she wont listen, the problem is with me, not her, its always that the problem is with me and not Mum.

Mum has a thing about me seeing a Psychiatrist that they will say that Mum did the wrong things with us growing up and stuff. She has this thing about being blamed for how we turned out. Any hint towards that and she gets her back up however she will run Dad into the ground time and again for every mistake, every choice that turned out bad, anything that didnt end up being awesome, particularly for my sister. Even now she hammers at Dad about his relationship with my sister, my sister doesnt feel like Dad loves her and all this stuff. Dad is my sisters male role model and shows who/what a good male should be like, how one should treat her. But there is never anything said about how Mum is mine, that she is an example of how my partner should treat me, what I should look for in a partner etc. Ive told her time and again how she makes me feel, she doesnt want to hear any of that, she says its not true when I say about it or that Im exaggerating. She is happy to ride Dad about how shit he is to my sister and he needs to change but when it comes to her and I, its me that needs to get in line with her, Im the problem. Which just reinforces the who thing of my sister being treated so much more differently than I am.

Im absoultly exhusted again, Ive been struggling for 20min or so. It came on really heavy, really quickly. I had something small to eat, which Im having difficulties with and Im going back to bed in a minute.

[ClockFace]

I want to give up smoking, Im on Champix which is helping me slow down but that final step Im struggling with. I have a couple left at the moment, but Im going to ask Mum if I can buy a pack on her card I was really hoping to stop tonight but Im not sure I can.

I went down to Mum and she said ok but after she said to me that I could appologise now. That set off a whole new thing. She seriously wanted me to applogise for getting upset when she made me feel like I was worthless and that she does it all the time. I really couldnt believe it and I said that I wasnt going to, I arked up about it. Mum first off started with how they have to deal with my attitude and I shot back does she think she is exempt from that? Im so sick of my "attitude" being thrown in my face, to the point that Im ready to stop talking to them altogether. I think Mum interprets me being hurt and upset by stuff as having an attitude, but when Ive talked about it to her Im not expressing an attitude its expressing pain, but while its an attitude she can dismiss it so much easier. Im not saying I dont have an attitude, with all thats going on, all the pain, how sick I feel etc, Im bound to have one and I do my best keep it to myself but it can be hard when I feel judged or dismissed by others for being in pain etc. I think that its encouraged, I know its encouraged when I am going through something and my sister has been through similar and it is made out that she had it so much worse and/or handled it so much better. I mean, without being offensive to women in general, she gets her period and its like everyone is aware, she doesnt have to actually say anything you can tell. But she will tell you, she will scream, rant and rave and its treated as acceptable because she has her period. How then do you think she goes with pain and sickness, especially significant pain and sickness. She has been through some pretty major stuff but its not like she went through it with a stiff upper lip and a perfect attitude but she was given latitude to be imperfect during that time. They will say they give me room but the moment I start to show any attitude or frustration (often confused for attitude) then Im shut down and normally pretty hard. I groan more than once, maybe twice and my sister will make a rough comment. Mum doesnt realise, because she has herself locked away in her room, but my sister isnt very tolerant of other peoples issues. She will complain about Dad moaning and groaning because everything on him hurts. I say anything about my back hurting and its like Ive crossed some sorta line. She says we winge all the time, though neither of us talk much or express our feelings. Mum and my sister however carry on about their issues constantly. Mum doesnt try to hide that she doesnt feel well, you walk into her room and she makes sure she looks sick and pathetic. She can hear you coming, can hear the door open so I dont believe for a moment that she is sitting looking like crap the whole day, Im sure she puts it on when you come in. She is always near death when she isnt feeling well, its never that she doesnt feel well but life carries on. God forbid Im unwell and I come down, she is sick, she is always worse, no matter how sick I am. Its the same with my sister, she is always worse off. Hell Mum goes on about Dad being the healthiest of all of us, he has stage 4 non-hodgkins lymphoma, how he can be the healthiest of any group I have no idea. He does more than any of us, that should mean he should be expected to do more, something I cant get through my Mums head. That said, a branch fell off one of the trees, a huge branch. Dad cut it up for firewood and put the smaller stuff through the chipper. He said about this later and says about similar stuff often, who else is going to do it? Like its an optional thing. I always feel like its pointed at me, same with cleaning and stuff. I physically cant do it, it causes me way too much pain, pain to the point that I am unable to function. If I do stuff like cleaning etc, Im physically unable to do things I need to do like go to doctors appointments etc. He has the same attitude towards Mum however, I do think that she is likely far more capable than what she leads people to believe. She would need some time to build back into it but I think she could actually come down and help but she is set in her belief that shes done her part when they were younger and now its Dads turn. The fact that he worked and renovated houses and this and that doesnt come into it. She was the major influence emotionally etc with my sister and I, she dealt with us the most and she looked after the house but Dad wasnt sitting on the sidelines doing nothing, he was working etc. and thats the difference now, he is sick and still expected to do everything, while she sits on the edge of the bed all day not contributing in anyway. My sister is far more capable, she is able to get out and go shopping for hours at a time etc. on a regular basis, pretty much daily. She can get around and do a fair bit. But she doesnt do much in the way of maintaining the house with Dad, when shes home. Ill give that she has been getting around with a fractured hip on top of the bursa, I imagine she thought it was the bursa causing her the pain. but its like me getting around with fractured vertebra. I was doing a fair bit more before my procedures. Thats what I think people forget, that I was far more active a year ago, a lot has happened in the past year medically and the impact pain wise is a huge. The limitations it has imposed are wide ranging and I know if affects my family but the person it affects first and foremost is me and I wish that they would remember that. I know my sleep is an issue for my sister and Dad, Mum being in her room all the time doesnt care as much. I go from being awake all day and night to sleeping all day and night. Ive never understood why its an issue, I mean Im not doing anything when Im awake, if I am doing anything, its medical shit. Im getting to my appointments, doing the things I need to for myself etc, so why should they care if Im sleeping or not, other than from a point of view of caring on a medical side of things.

My stomach is really doing crazy stuff this morning, there is heaps of wind, even more than recently. Ive taken more Lactolose, another max amount. I hope this actually gets some movement, Im not really sure when I address it with my GP or ER. I have to be coming close. Normally I dont think much of enemas and the like but if I could get some of the rock hard stuff out the way and allow the softer backed up crap to come out, but the idea if any digit or item going up my butt just as a rule but more so currently is extremly unappealing, even if it would help with the current situation. 

When I asked Mum about buying me a pack of smokes she kinda made a fuss and she even said something about me being on Champix, which I am but that doesnt mean I just stop and they arent meant for that, Im in the period where I do though but its a process. Im in pain and I have just been told that Im likely going to be in this leve of pain for a couple more weeks, thats been playing in my head quite a bit, which is affecting my smoking.

Ive woken up at 6am and I feel really out of it, Im still pretty tied but my head isnt engaged at all. Its taken about an hour but I feel like all systems are kinda engaged. I only have the one appointment today at 1:30pm, which is enough as far as Im concerned. My legs are more sore than normal, they normally hurt at the moment, the thigh that is, but today they are really bad. Thats something I was going to say last night, I dont think my family, my Dad especially realise how little it takes for me not to be in pain but to be incapacitated. I know, by know, how far I can push before I go from pain to barely able to function. I also know at thee moment that that isnt a massive gap, because I start the day close to not being able to function. They seem to be of the opinion that I should be able to push through the pain and do something, I dont think they care what, just do something, anything. Also, looking after my own affairs isnt sufficent.

I made myself a coffee and put a shake in the freezer, now that I have sat down to have my coffee I feel sick (I ate an apple) but Im ready to go to bed, like now bed. I fell asleep at the table for a while, Im having a smoke and going to my bed.

I went back to bed for a while, my support coordinator rang and woke me up, I accidentally clicked to ignore the call, which wasnt a bad thing. I had a massive headache and everything was really foggy, I couldnt make heads or tails of stufg, not answerings the call has given me some time to get my shit together, Im still having a had time keeping my eyes open. Took a while but Im a bit more with it now. Im really sore, pain is really bad today, but the weather has turned horrible so I figure thats why.

I have my GP soon, Im going to have to bring up my constipation, see if there is something I can do to get things going. I woke up with a tempreture of 38.3 which has dropped to 36.2 now. I rang my support coordinator back but she was busy so waiting on her to call me back now. She rang back and again she told me how impressed she is with me, which I dont get. Im sick, I have avenues by which to to improve how I feel, to find out whats wrong and get treated, so I dont think I have any choice but to push forward. She can see it though, I dont know why my family cant, why its so hard for them to realise what Im up against and that Im still perservering and if they were honest pretty positive about it. My issues dont generally fall in the realm of that area, thats not why I get grumpy with them, its how they treat me and no matter what I say or do, they keep treating me that way which hurts even more. It just came up on TV but thats the thing, that really gets to me, how often Im wrong, doesnt matter if I was in the appointment, alone. If I was in the town earlier that day. If I am the one feeling that way or being made to feel that way. Im wrong, if Mum doesnt agree or my sister doesnt agree and half the time its if it doesnt suit their narrative. Like it suits their narrative that I have an attitude and am an asshole because Dads an asshole, particularly in the same area and then its not them its us, we have the issue and should be corrected, again wrong. Then Dad gets involved and he takes Mums side against me, he enforces how wrong I am and at the same time he is telling himself how wrong he is, eventhough he doesnt believe it, eventhough it hurts and upsets him what she says and does to him. That really upsets me, I have his back with Mum, I pull Mum up when she is being unfair, which is pretty much whenever she talks about Dad. But Dad doesnt have the balls to defend himself and he certainly doesnt have the balls to tell her that she needs to listen to what Im saying and how I feel. I was just thinking I feel like they blame me for me being as sick and as in pain as I am. Like Im big and thats the overwhelming reason Im in the boat I am, so its all my fault. Thats not to say that it doesnt pay a role, it probably does but not as significant as they make out, Mum is regularly quick enough to point out my weight with my back, bypassing the arthritis and fractured vertebra, if I was thinner it wouldnt be an issue.

I got a message a short time ago letting me know my glasses were ready so after my GP appointment Ill go pick them up. Its a fair walk to the SpecSavers but there are a couple of seats along the way so Ill stop and have a break at them. Ive made myself a protein iced coffee to take with me. I had an iced coffee this morning, but I want to move away from them even being something allowable on a daily basis. The protein ones are quite nice and I like them, it wont take long for me to prefer them over other iced coffee's. I had a play with the ingredients for both protein shakes, I think the iced coffee is good as it is, I dont think its gonna get better. But the 310 Im gonna try with extra milk, it tastes ok but its a little thick.

Im about to leave for my GP and Im really being hit with the tiredness stuff, like I really want to go to bed again. But I have to get my shit together and go to the appointment.

I'm at the GP clinic pretty early. Before I left I checked with Dad that he had transferred the money, he said he had but the way he said it was like frustrated that I was checking up on him. But he forgets or doesn't do it for some reason and Im left looking like an idiot. I wish there was some way for me to just see the balance on the account.

I'm really tired, Im inside in the waiting area and I got close to nodding off. I need the reading glasses, im finding reading really hard and Im quite keen to see if they help, if it wasnt for that I'd pick them up another day.

I rang Mission Australia about getting onto the NDIS. I sent them an email about a week ago and haven't had a reply. I got an answering machine and left a message. They did ring me back and we have made an appointment for next week for me to speak to them.

The doctor has changed my pain killers which I expected, what I was on was really high, she has only dropped it by 10% over all so its still incredibly high but we are both a bit happier with them being lowered, I just hope they can maintain my pain.

I picked up my glasses, Ive tried them out, the reading ones are going to take a little to get used to but I think they are better than using the everyday ones on my tablet.

Im going to go to bed in a sec, my stomach is sore, more sore than upset at the moment. I talked to my GP about what I can do and I can mix laxitives, I just got to keep water etc up, so Im gonna hammer it when I wake up. She also said I was just tipping into the diabetes stuff, like I wasnt really bad, which is good to know. Im still going to be making sure I do things right for someone with diabetes, Id rather halt it here than let it go.

Ive been getting dizzy and wonky most the day today, its 3:30pm and while not horrible its really getting noticible. I laid down for about an hour and a half, mainly because I was tired but because I was incredibly hot and I put my ceiling fan on high and laid under that. I didnt sleep much, eventhough I was tired but after that time in bed the hot feeling past. When I got out of bed I checked my tempreture and its 34.1 but it climbed up to 35.8 really quickly. It shouldnt take long and it will be normal again. When I came down, it appears that Dad has just started sanding the kitchen windows, you know the wood on the outside of them. Its really noisy and annoying, so Im going to pop down and see my Mum  for a bit, if she starts on shit again Im gonna tell her to stop or Ill just leave. I cant handle it today, anymore. I cant handle her justifying being horrible to me or making it out to be my fault or Im exaggerating. I cant deal with her not accepting that the way she interacts with me, the way she talks to and about me and the way she treats me in general make me feel like a lesser person, somone of no importance or relevance and that the only way I have those things is if I am doing things for her or working etc. Even then I feel like its more so to keep me occupied and out of her and my sisters way, if Im doing stuff and not at the kitchen table etc then there is less interaction between my sister and I and less for my sister to complain about. She has no issue with me coming down and talking with her, so long as its not about her, not about our relationship, which she thought was fine. She will carry on about Dad and my sister and to a very lesser extent Dad and me but come to the topic of me and Mum and she doesnt want to hear it. She doesnt want to hear how she hasnt always done the best or how she makes me feel the same as my Dad makes my sister feel yet will have goes at my Dad time and again for his role in my sisters and his relationship. My sister and Mum are pretty close, they have had there periods recently though. But my sister has that, she has one parent thats interested and will spend time with her, I dont. I go and see Mum, if I dont its not like I get a message asking if Im ok etc. or she comes finds me. If we talk about stuff that matters to me, how Mum makes me feel, how I am feeling etc. its usually met with head in hands as if the burden of discussion and understanding where I am coming from and actually acknowledging where I am coming from is just too freaking much, my feelings, my worries, my fears are written off, its not acknowledged or shown to be understood that its an understandable fear, even if it not.

I just spent some time with , I said to her about the really low temp and the really high temp. Now heres where I was wrong, I thought having really low and really high tempretures would be an issue but no the problem is, Im checking my tempreture too often. Having no idea what I have been told to do, Mum has decided that I should only be checking my obs 3 times a day, I normally only do so 3 or 4 times a day but the general idea being that if I didnt check my obs I wouldnt be sick I think. Dad gets similar, he apparently reads the side affects of medication and therefore he gets the side affects. The better idea being not to read the side affects and then when you have issues be completely oblivious to them, especially the really bad ones. Then you can keep taking the medication and doing what you want to do, when you end up falling asleep at the wheel or in hospital, you can say that the doctor prescribed the medication and you wernt aware that these things were side affects.

As Im about to leave Mum asks me to bring her back a roll, she is sick so she cant possibly do it, not that it would matter if she wasnt. I had just got through telling her how my dizzy, wonky feeling is really bad today and she is completely aware that I have issues with my back, that they are worse at the moment and doing anything, especially walking is a problem. So, she wasnt at all suprised when I said that I would but it would be a while before I could come back. No, why dont I just do it and leave it outside her door, I have no idea how that would make it easier for me. She didnt want to have to fight the dogs. The fact that Im doing that and struggling to stay upright, not to fall into walls and the like, that should make is super easier for me to do it. Add to the never ending intense pain that I feel, that gets worse when I do pretty much anything, so there should be no issue with me leaving her room, making my way down to the kitchen, bouncing my way back to her, which adds to the pain, in case you missed it, giving her the roll and then crawling back to my seat in the kitchen. That should play out so well, especially if you dont throw in that I needed to pee. The fact that I have to repeatedly tell her that this is the issue and how it affects me really gets to me. By now she shouldnt have to be reminded that Im disabled and I live in pain. That I cant just get up and do what she asks, when she asks, sometimes at all. Im not being lazy, Im just disabled. But tonight that she asked me to do anything remotely like walking up and down, knowing that Im having major issues with my perception and my pain, she just doesnt value me at all. If I had hit back at her with that it would have been on, she would have lied and made it worse. I hate thinking this way, but I basically just have to accept the way she is with me, that she will never see me as an equal to her or my sister in any capacity, that my main purpose in being for her is to help her do stuff and that regardless of my issues first and foremost thats what Im about, until she dies. She will also have my sisters back on that softa stuff until then as well but after Mum dies things will change. Again its shit to say, but its not going to be until she goes that I am probably going to feel safe and cared for or atleast how people actually feel might not be reiterated as often.

Its nearly time for my night meds, I havent had a laydown for a while, Ive actually kept myself somewhat occupied. But, I think that Im going to go and have my night meds and then go to bed for a while. I have been playing with the whole NDIS thing, I have a pretty good idea what I want from it but today I sat down and actually compiled a list so that when the time comes I have a complete list, not scrambling for this or that and forgetting what I actually need.

I laid down for an hour, I didnt sleep and I didnt have intentions of doing so, I just needed to lay down. My muscles are acting a bit odd, all over, not so much spasming just shaking, like they are tight and Im trying to losen up. I have an unbelievably uncomfortable stomach, I really feel like everythings ready to do everything, but nothings happening. My stomach muscles are super tight. The feeling of relief Im going to have when I actually go, like properly go is going to be like nothing Ive felt. Im pretty hungry, Im going to make something for my tea soon, atleast thats what I think the feeling is. I dont know if Im hot or cold, I had the heater on for like 5 min and now Ive turned it off. Im pretty awake considering how I have been lately, like I have some energy, some drive. Ive got a bit done today, which makes me happy. I might look to do a few things tonight as well. The feeling in my head has gone, which might be part of it, it was really bad today and having that go away would liven anyone up.

Out of the blue Dad is spending time with Mum again, he is down with her basically every night for a couple hours. I dont have a problem with it but I know it wont last and when he stops he wont say anything and it will cause an issue. I know part of it is that he is complaining about me, but I think a bit reason he is doing it is because he cant thing of anything better to do. I just hope we dont see this turning out to hurt Mum too much.

I had my tea, I must have been hungry because no matter how difficult it was I ate the whole lot. I feel very full, not to uncomfortable. However, I am really tired all the sudden. I dont feel flash, its like Im really hot and I dunno just not right. Im sure most of the reason being that Im backed up and really need to poo.

Most following this would realise I am well without money at the moment, I just got notified that I have $192 being paid into my account. Im assuming its to do with Medicare but I dont particularly care, that money is really helpful at the moment.

Its quarter to 4 and the pain is really intense, Im going to go back to bed more so to be laying down more than anything.

[ClockFace]

As I said I woke up with the pain in my back being really intense. I feel like my apron and inner thighs are swollen, its not comfortable to sit down. But the wonkyness in my head is really doing me in, its incredibly intense. It wasnt so bad and I thought Id nick into the servo and get some smokes before it got bad and before I have my psych appointment. That didnt exactly pan out how I wanted, on the way there I started getting really bad, by the time I got home I was not good at all, I had the added part that I felt really nauseas and sick as well. I really feel quite aweful, Im going to call the ENT today and see if there is anyway I can get the appointment brought forward.

Some good news, this morning at some point I did get some movement on the bowl, not a huge amount but some. Im going to take an extra thing of laxatives this morning, hopefully doubling up will get things flowing freer. Im having a bit of a hard time with derealisation this morning, amongst everything else. Im really tired, I have psych but I really just want to go back to bed. After psych I have to take Dad to drop off his car, which I cant really be bothered with but there you have it.

I went and laid down for like 10 min, just that seemed to help, I dont feel quite as horrible now. I still dont feel fantastic but its calmed down a bit. It didnt take long for things to returnto how they were. Id reallly like to lau down for quite a while and sleep. Hopefully when I woke up I felt a lot better.

I logged in for my appointment and no one showed, I even tried 30 min later and still no one there. So I wrote a very direct email cause Im pretty sick of this company. As Im sending the email I got a notice from them about MY failure to show up, which just made me so ticked off. So I rang them and they are now investigating, I cant say Im hopeful of the outcome. They seem to not realise or omit that we are patients, we are sick, we have mental health issues and that they should be working with that not antagonising them. If I have an appointment, online and the person isnt available within a few minutes Im done, I cant handle the silence etc of waiting. If they are rocking up late to an appointment, their assumption should be that I came and went and therefore send me a message or call to let me know that they are now available. Its not rocket science, but it does seem to be for this company. They are the only company I have issues with, past or present. The annoying thing is that their platform is so good, its just not focused on customers, they arent focused on their customers. Its presenting the most leanest and cost effective way to provide a service on mass, if you fall outside this then too bad, it wasnt designed for you. Most of the platforms are this way, but the others Ive dealt with have an understanding of who their customer base is and that they need a gentler hand. Maybe they understand that and are just not willing to provide it.

My sister wanted me to come down and pick her up, at first I didnt understand what she meant, but she wanted to be discharged and come home. She was coming to me, early in the morning before Mum was up to bypass the Mum-fit that would occur. I said that I had an appointment at 1 but even still I dont think Id be able to drive that far. There is lots about it I dont think Id be able to do. They reduced my pain meds, which Im feeling, and even on the stronger ones, I was having trouble just driving into and out of town, like 20 min. To go pick her up would be close to 2 hours round trip. That would also be very tiring and Im certain the whole suddenly tired thing would happen, which would be good in the city or on the highway. Then there is the actual picking her up, even if she met me down stairs id have bags to put in the car etc, just as likely though Id have to go to her room and bring her bags down, which God knows how I would do that. So why she would ask me, as she knows about the post operative pain, sleeping etc. When I said I dont think I could do it, I got "doesnt matter" which is not a simple, throw away line. There is a meaning behind it, she isnt happy. She expects that I should just be able to manage these things. If it was a doctors appointment and I was alone, Id go but its not, not to mention why arent you asking Dad. But there is this attitude, granted I am reading it in but with decent foundation to do so, of implied lazyness on my part from her. Like she just doesnt get that simple things like walking and driving are pretty painful and that I cant just push though this kinda pain, I know whats on the otherside and I dont want that, plus its dangerous, especially if I were to be the driver.

I woke up to my alarm at midday incredibly confused by the fact my alarm was going it took sometime for me to realise it was midday and I needed to get up for an appointment. Being a really big guy my stomach folds over at the bottom onto my apron. Under the fold on the right side is really sore when I woke up, Im going to get Mum to look at it for me, Im swollen in that area, Ive been having tempretures etc so Im really hoping that I dont have another round of cellulitis.

I had my meeting with Dani, it centred around how I am left feeling worthless by my Mum and my family, I realised that going to work helped me not feel consumed by that feeling. Without a different input, without getting some affirmation that I wasnt completely useless, being drenched in that feeling all the time I am really struggling to deal with it, to feel any self worth. Even my writing isnt enough to keep my selfworth above water a lot of the time. I mean I went down when I got home and gave Mum her latte and asked her if she would take Dad to pick up the car when he is ready. This kind of thing is really rare but she didnt ask if I was ok or whats wrong she just, eventually, said ok. I left and went and sat down in the kitchen again and Dad came down later and true to current form said nothing to me. He didnt ask if I was ok, if there was anything he could do, neither one of them showed any concern for me, nothing. I really am on my own when it comes to dealing with my health and mental health issues, clearly being supportive of my sister is something they can manage but beyond that Im not worth the effort.

I laid down for a bit, not to sleep just to rest and have a break from this feeling in my head. Dad at the same time is out the front with a sander sanding at the window sills, which was not at all irritating. Unlike Mum who cracked the shits when he was doing her room and she was trying to sleep, I accept that its daytime and Dad has stuff to do and at somepoint that means the window sills. I decided to go sit in the shower for a while (I have a shower chair). I walked into Mums room and there's Mum fast asleep. Now Ive asked her to take Dad to collect his car, which I assume will be around 5/5:30 (its 4:30) so it wont be long and she will need to be up to take him. Why she went to sleep is beyond me because she has a hard time waking up and she will make a fuss given it will only be a short sleep. If she thinks that by going to sleep she is going to pass back to me taking Dad she is mistaken. I didnt ask her because I was tired, upset or what ever, if I had been asked I would have said that I litterally can not drive, I would be a danger driving, given the difficulty I am having with my perception. Coming home this afternoon after being caught out in town by this was really really scary and really difficult. Im not about to put myself into that position again, on purpose, because my Mum cant be bothered helping.

I often feel like thats happening. My Mum more often than not I think, cant be bothered helping, doesnt think she should have to or its too much effort and I feel like I get painted with the same brush. I have multiple debilitating illnesses that prevent me from doing quite a bit, including stuff I want to do, hence the reason, I am not working. Im not in a small amount of pain, I am actually suffering from this pain, significantly. It is preventing me from doing and being what I want to. It is making me miserable. I dont take the huge amount of pain medication because I get some kind of high, I take it because I need too and while it is a lot of pain medication it allows me to get by, to do the few things that I need to do and even then it doesnt always succeed. It doesnt however take away the pain, it is not a temporary fix, it is not a solution, it is not a cure. It is like turning down the gas on a boiling kettle, it is still pretty hot, but its no longer bubbling. I might not be doing this or that, cleaning, or whatever but I make sure I do my own stuff, I dont really ask for help, I do it myself. If I cant do it myself that day, then I generally put it off until the following day. The number of times I have pushed myself to drive myself to an appointment etc where my pain was really bad and I probably shouldnt have driven, but I didnt want to inconvienience anyone else, or moreso I dont feel I am allowed to come to other for help. Thats actually more the truth, I dont feel like it is acceptable for me to ask for help from my family, especially my Mum, somewhat from my sister. I try not to ask for help from Dad because Mum and my sister ask so much of him, but its more the way he carries on about the help they ask for, its like its such a big deal, which I get some of it is, its made to be so hard or Mum and/or my sister could just do it themselves. So when it comes to me needing help I dont feel anyone has any capacity left to actually give it to me, least of all Dad. Not only that, when help is given, even small things, its held against me like I have a debt to pay. My sister and Mum are really good at this. If you call them out on it, ofcourse they dont mean it, its just joking around, once is joking, regularly, you mean it. My sister seems to really think that her giving out help in any form or however great means at a later period if someone doesnt want to or cant do something for her she can bring up how she did such and such for them and blah blah blah. So I feel that Im not worth helping or that it is only an investment in future manipulation. That if I want help, then I need to give it to myself. Hell, I had clothes in the washing machine, I was clearly in pain, I had made it clear that I was in a lot of pain verbally and Dad says to me, are they your clothes in the washing machine? He and I are the only people who use the washing machine, so if they arent his, then yes they are going to be mine. Maybe he could consider hanging them out for me. They can say about others being in pain, but the pain Im in with my back is different. I know this because I have a buggered shoulder and the pain in my shoulder is different to my back pain. The pain in my shoulder is really bad, it can be really debilitating but I dont let it stop me, I still push through, I do what I need to do, what I want to do even. My back pain is different, it stops me, in my tracks. I cant do this or that, my back doesnt just hurt, its not just extraordinarily painful, there is something that happens that stops me from doing what I want and need to beyond just pain. Its like normal pain, everyday ordinary pain is like going through check points, you still get where you want to get but its an annoying trip. My back pain, it starts off with the check points but eventually you crash into a solid wall and the US Army have unleashed their forces against you in such a way that you cant back down, you cant go in reverse, you cant go forward, you just stop.

I laid down for a while Dad was at my actual window sanding away, I was so desperate to lay down at that point that it didnt matter. I eventually fell asleep regardless. Sadly it did nothing for the feeling in my head, which seems to be much worse than ealier. I really didnt need to get stuck in town today and have to drive back with this feeling, I wasnt plodding along well before hand and I have really come crashing down since that happened. Im in pain, which more or less I can manage, my shoulder was being very irritable, I was having seriously bad derealisation, I had a bit of an issue in the morning with the head shit but for it to come on while I was in town, minutes after explaining how worthlessI feel the rest of the family think of me.

My sister is coming home tomorrow from hospital and going into sleep in my Mums room. Im not 100% sure why but thats whats happening. I got a message from my sister asking if I was home tomorrow, which I replied yeah. I asked why etc. and replied that I wouldnt be available to help etc. not realising what was going on. But why ask if Im home tomorrow if Im not involved in anything? I think my statement stands, Im not going to be available to be taking stuff to them 1/2 the day, nor am I going to push to do it. The  other thing I see ending is my talks with Mum. My sister is going to be in Mums room, so its not gonna be possible for Mum and I to have an hour or so together daily in her room. It wouldnt be impossible for them to continue, she would just need to come down to the kitchen and sit with me there for a few weeks. But I know, without any doubt that she wont do that. If Mum doesnt come down, if she doesnt put a tiny bit of effort into us having a relationship it will be over, I wont be pushing for it, pushing for something I suspect at the moment she isnt interested but this will confirm it and there will be no way for her to deny it. I mean its been pretty clear for my entire life that Dad isnt interested, he pops his head in randomly, he helps with some stuff but an actual relationship he is bothered with. Mum I keep having to go to her, I keep having to push it with her. Maybe she has made it clear that she doesnt want a relationship with me, she doesnt say anything if its late and I havent come. She doesnt check in to make sure Im ok, even though she knows that Im going through a bad spot at the moment. There is nothing coming from her, I mean she knows Im struggling financially and she asks me to get her a maccs coffee for her, she doesnt offer her card to pay, she wouldnt even think for a moment to say heres my card and get one for yourself. Again, she goes on about Dad, Dad tries and it would seem the goal posts are moved on him all the time. Mum doesnt try, Mum does what ever she wants and acts however she wants and I (the rest of us) just accept what we're given and she has an excuse for all of it that makes it ok and means that I feel the way I do is wrong because she has an excuse for why she did that or said that or somehow its my fault. My Dad I think does a pretty decent job with my sister, he doesnt get it all right, he doesnt tick all the boxes, but if she pulled her head out her arse and met him half way they could have a good relationship. Dad at least wants to try with her, less so with me, Im a guy I should be more independant. Mum and me, thats never going to change, she is never going to take a step toward me, a genuine selfless step forward. I am going to go down today regardless of anything so it cant possibly be said I stopped first.

So Im making changes at the moment, predominately with my diet. I recently got diagnosed with diabetes and while its not advanced in any way, it shook me up and has really made me reevaluate things. I will admit that I know enough about diabetes to know that it can be lethal, but it is a slow death that is painful and likely involves hacking body parts off, which doesnt sit well with me. While I know that I am not even remotely in that ball park, not even in the car park but I am a paying member of the ball park so I need to pay attention and do what I can to do to prevent myself going down that path.

I know Im not going to eat mountains of salad or even much fruit, not that you can. I know in general Im not going to eat a huge amount of anything, Im trying to improve that though. Oddly I feel like my mouth isnt so dry as often with the increase in food intake. But knowing that Im not going to eat a huge amount of actual food and wanting to improve my health I am turning to meal replacement shakes and protein powders. I dont like them with water so Ive been doing them with milk, Ive looked into how much sugar I should be aiming at having, well the maximum and the amount of milk Im drinking means I have a fair bit of sugar just in my shakes. Im going to try mixing soy or oat milk with the normal milk and see if I can make something that tastes ok but isnt quite as loaded with sugar. I should clarify, its not got a massive amount of sugar with just the milk, its just a fair bit given how little sugar Im aiming for daily.

Ive also almost eliminated normal iced coffee from my diet, other sugary drinks have gone as well. Instead I have Powerade zero products and water. What amazed me is yesterday, I didnt have any interest in drinks other than water, other than one or two drinks, which is really unusual. Im hoping that I can keep that up somewhat, water would be my best option.

Ive been looking at different apps to help me, oddly there isnt a dedicated app for diabetic diet management. I also wanted something I could use to plan my meals, there isnt too many options for that but I found that Calorie Counter by Fatsecret has both and other features which for me at least, allows me to monitor the key items to be monitored. Unfortunately, macros are a little harder to just see easily, unlike in MyNetDiary where it is made very clear at every step.

Today is my last day smoking. Ive been on Champix for nearly a fortnight, so I need to stop after a week and before 2 weeks of taking it as part of the process. This is a huge change for me, the money saved will help with my medical costs but im hoping to buy some stuff Ive wanted or needed for a while.

Im having an incredibly rough morning, I had the wonky feeling for a while but I the feeling that I am awake but dreaming has been intense, its making functioning difficult. It actually made functioning impossible, I couldnt do it, not even sitting and writting so I went to bed. I got a bit of sleep, not a huge amount, I know I struggled with my legs and moved around quite a bit. When I say moved around, I really moved, I woke a couple times with my lower half up in the air pretty much as I turned over, kinda in the air. Thankfully, I had taken the stronger pain medication I have before I went to bed. Despite the crazy movements and limited amount of actual sleep I woke up feeling far less like I was dreaming, its still an issue but its not impacting on what Im doing.

As unappealing as it is, Im going into the chemist in a while and Im going to get a suppository and see if that can get/force some actual movement for me. The discomfort was more pain this morning, pain and nausea and feeling so much like shit in general. Along with everything else, the way my stomach was feeling was horrible. Its really frustrating, I feel like Im ready to go but nothings happening but I am backing up like nothing else.

My sister is coming home from hospital today, she had a bursa removed and then spent some time in hospital to deal with her legs. Her legs react every time she has surgery and she gets seriously bad tremors and walking becomes an issue. I dont know if Im missing something but its not the most serious of surgeries but a fuss is being made. Mum has Dad getting flowers from the yard, Mums room is being reorganised so my sister can get around it, she is on crutches but its not like she is the first person to be on crutches. Im trying not to be mean or insensitive to things but I dont get why everytime she has surgery there is such a fuss. The house has to be cleaned, she needs to sleep in Mums bedroom, in Mums bed, with Mum, again. The only reason I can fathom is that there is so much shit around the house of my sisters and Mums that getting around the house on crutches would be really hard. Which you would think would indicate maybe clean all your shit up, it really is about time that the house was sorted out but thats unlikely to happen.

My cardiologist is contacting me today about my results from my echo and to discuss how I have gone with my own monitoring. When they did the Echo they did something different than the other times and thats been playing on my mind, that they had to do something different because something wrong was found.

Mum has her weekly doctors appointment shortly, so her and Dad will leave soon for that. Not long after they leave Im going to try and do the suppository so that I can deal with that and hopefully Ill be able to go back to bed before they get home. Im starting to feel kinda shithouse again. Like my head doesnt feel right, I feel spacy and not really here.

Im all sorted, now to hope the damn thing works. I keep thinking whats wrong with me, like my sister is coming home today and Im pretty blah about it. I dont have a problem with her coming home, but Im just not that interested. Its not much of a highlight, she has been gone a fair while, but she has visited home at times. But its not that, maybe its so common that her and I are in hospital etc. that coming home isnt a special event, maybe it shouldnt be a special event, probably that its never a special event for me. I dont see why it would be a special event, its just coming home from being away a bit. And this is where I dont know whats wrong with me, Ive never been this way before. I dont feel quite right.

Ive come over all achy, like my shoulders and legs ache real bad, the rest of me feels like its been in a wheelie bin thats gone rolling down a hill. My head still isnt right and Im getting wonky sporatically. Im really tired again, its like I go from being fine to the feeling of having been awake for a couple days and it happens in the spae of seconds. Its not just tired, you start to doze off, instinctively you shake your head to wake up, eventually thats not any help anymore, if you havent found your way into bed, where you happen to be is where you happen to sleep.

Absolutly nothing happened post suppository. I laid down for a couple hours and fell asleep really quickly. Ive woken up and I feel pretty horrible. Im dizzy and wonky again. I have a weird kinda headache. I feel like I havent slept in days. My stomach hurts. My body aches all over. I came back down and sat in the kitchen, Dad came down a short while later and said your back. I dont think he is happy with how much Im sleeping, but Im going to have to go back to bed again, I just, I feel so lousy.

Its just before 5pm, Ive just woken up again. I have been asleep pretty much the vast majority of the day. Im assuming that my sister is home, Dad hasnt said a word about it. He hasnt asked if Im ok, I mean I really have been asleep most the day, more than the normal amount of sleeping most the day. My cardiologist hasnt rung yet, he should soon. Once he does though Ill go and see my sister and see how she is.

I cant get warm enough, I decided to check my tempreture and thats at 39.5 but dropped to 37.9 pretty quickly. I think tomorrow morning Ill change my appointment so Im not seeing my normal GP and Im in the Bug Hut. My GP is pregnant and last thing I want to do is get her sick. I havent even been up for an hour and I am keen as to go back to bed. I went down to see my sister, Mum didnt say a word to me the whole time I was there, I dont know whats up her arse but she doesnt seem happy about something. I said hello to my sister, we exchanged a couple words, she seemed happy enough but I stood in the room with neither of them saying a thing to me and it didnt appear that either were interested in doing so.

Im struggling to get much in today, even water is a challenge. Im trying to take some more laxatives and Im really struggling to get it down. I feel like I have something stuck in my throat constantly.

The cardiologist rang and Im all good, no structural heart issues. I told Mum and I told her about being referre to MACS, now I know I dont know everything going on with my sister medically but for a heart beat it would have been nice if that remained about me but as soon as Mum got an understanding as to what MACS is she jumped at it for my sister, they have been looking for something like this for ages blah blah blah. It would have been nice if Mum could have expressed something about that it was good I was getting onto this before barging in the door with how my sister needs it.

See she has the understanding that my sister needs these kinds of services, though Im sure, really sure that her doctor would be aware of the services and would be sending my sister to them if they were suitable. I really must be missing so much because outside her mental health issues, I dont see that much impeding her life. Its not to say she isnt unwell but I really think its played upon. There is also the aspect that Mum goes overboard where my sister is concerned. Everytime my sister is in hospital here is an issue, normally one that is of their own making, if its not their own doing then they hype it up. The number of times I go in for procedures etc and everything goes fine and rarely once can my sister say the same.

I get pretty much no support, there is hardly any desire by them to be involved in my medical life. I tell them whats happening but 1/2 the time I just get a basic acknowledgement that they have heard me but there is no or little actual engagement. No one really checks in on me, I wouldnt like the overbearing way my Mum is with my sister but something would be nice, on occassion. Something that showed they were interested and keeping up. But they arent keeping up, if I asked them even just the major things wrong with me and where we are up to in dealing with it they wouldnt get further than knowing about my back. I told Mum about the MACS thing and she probably doesnt understand why Im even being sent there. Thats one thing, they then go on to dictate to me how and what I should be doing in relation to my issues.

I laid down again, seriously Im so sick of 2 hour sleeps, I woke up and Im feeling really kinda miserable. The who continually in pain, multipul illnesses, the MACS thing, the constipation, feeling sick all the time, being exhusted all the time, all the while doing it alone, not just alone almost against 3 other people, 3 people who are supposed to be the closest people to me. People who are supposed to have my back, supposed to care for me. They say they do and maybe they are being truthful, I just dont see it. It doesnt appear to me that they realise or accept just how unwell I am. They seem to be holding on to the same attitude they had about my back before I had all the scans which showed the fractures. But even then, once the shock of the fractures has past it seems like its back to the standard, ignoring the facts because they interfer with the present wants of the rest of them. When I talk to Mum directly she will talk like she is on my side, that she understands and appreciates the pain, sickness etc. Im in but the moment it interferes with something she wants, her desires, then she is less understanding and appreciatiative. For example, getting her the roll and not grasping the fact I cant walk, down, up and down from her room to the kitchen. It stands to reason that if I cant do that going up to see if she want anything, if indeed shes awake, when I go out, stand there while she takes 5 minutes to say something 30sec long and then the carry on about something completely irrelevant so that I am standing just long enough that the pain is really kicking in and ignore me when I say I have to go. I dont understand how almost every single time I go to leave her room, she can find crap to talk about once Im standing and have said Im leaving and will ignore/not hear me when I say I have to go, she will miss my spasms, my knees giving way. See I dont think she does, not at all. I dont know exactly what the end goal of it is, if its just to prove that she doesnt care, that she can force me to be in pain, like a domination thing. I often just clearly say I am leaving and go, I think Im going to have to push that harder, to the point that I might just start walking out when she continues to talk after I say Im leaving. They all have an attitude that I should be doing more around the house, almost that I can do more around the house, I just need to push a bit harder. They dont say anything, but the attitude, the grumpiness etc I cop. Id like to help Dad more, he isnt well either, If I could I would, but sitting and writing hurts and now within a couple of hours Im having to go back to bed. A short trip into town sees me pretty worn out now and if Im unlucky I am ending up all wonky in the head, so much so now if I am going to be in the car driving after 3pm Im going to have to have Dad drive me. Even the mornings are becoming touch and go. So much of the day is being taken up by this feeling. Though most of the night Im ok. All I want to do when this feeling is happening now is be in bed because the intensity has increased so much. So, while I used to feel like my life was getting interferred with by my issues, I was able in most cases to minimise the impact, but now Im actually losing hours, Im not able to minimise it, Im not able to do anything but to exit stage left until it goes away. I know my appointment has been brought forward but the ENT isnt just going to be able to examine, diagnose and treat in the first appointment, so I also know that I am just getting investigative ball rolling, its going to be some time until they can do anything about it, if indeed it turns out to be an ENT isue.