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Something’s not right

Malens Babble

Malens Babble

I think Im starting to get a handle on the forum a bit more and figure that I could start my own thread for my babble rather than filling up the feed and others posts not get their appropriate time on the notice board.

Ill still post some stuff normal but most Ill post here.

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In response to: Malens Babble

Re: So over it

Dad and I just had a bit of a talk, we just stopped and its a bit after midnight. One of the things Ive been left thinking from the talk but not mentioned when we talked was the effort that my sister, myself and my Dad go to, to avoid upsetting Mum when we talk about stuff with her. I mean we go out our way to make sure we are not coming across as though we are indicating that she should held accountable for the way we feel. She cant be made to feel like we blame her for us trying or wanting to try and end it. She cant be made to feel like she wasnt anything but the best Mum growing up. She doesnt play a part in how our mental health issues have developed. Dad and I were talking about Mum and him and how she basically just belittles and berates him every chance she gets and will make opportunities where they didnt exist. He doesnt spend a huge amount of time with her now because of this and he is so close to telling her to work shit out for herself, shes on her own etc. The only reason he is sticking about at the moment is for my sister and I. If you said to Mum that if she doesnt stop ripping into Dad all the time, it would first be that she doesnt, then how about all the times he does it to her. But you might, if you push get the responce of how dare you blame me for his issue. She cant have it, she cant have that she is a large part of why my sister tried to end herself, she has been told, my sister has apparently been very straight forward about it but still no, cant be me. I am the most likely just to call Mum out on her bullshit, I have nothing to lose, there is no investment here. I have told her that I had issues with her growing up but it was again met with, cant be me, you cant blame me for your problems. But now days, we do our best not to indicate to Mum that she is at fault, she is to blame for anything. We protect her from so much, just so she wont feel bad. Why we arent telling her that by her actions she is making us all feel like we are unloved pieces of dog shit is beyond me, I get we dont want to upset her but as a result we have my sister in a mental facility, again. If we are really honest about it, if she continues others are going to end up there as well or someone will find a way to succeed. Even if someone did take their life, the other left would likely shield Mum from any accountability, even if she was told to back off right before she pushed the person over the edge, even if there was a note left saying they coudnt escape Mums critisim or what have you, she would still be protected because thats what is done for Mum, she cant handle the truth, she cant be trusted with what she would say or do if she were to learn how her family, how her extended family etc actually thought about her, her ego would disinergrate, her depression would worsen, she would blame the rest of us and she would never forget or forgive what was said, we also wouldnt be able to stop watching over her because SI would be a huge issue and given the oppotunity thats the route she would take and we have to at all costs protect her from doing that to herself, even if that means someone else or others do. It would be and I dont want to see it happen, but I think that one person dying trying to protect another person, who is the reason for the first persons death is dumb. I have no problem protecting anyone, but I wont protect someone who is tearing others down and destroying them while hiding behind my protection. That makes me as guilty as them.
I got almost exactly 3 hours sleep and woke up, 3 hours is my average number of hours sleep Ive been getting lately. Its freezing cold. Im really sore, eveywhere. The boil between my legs is really bugging me, it hurts, no matter what Im doing it just hurts. My back isnt good, its painful not horrible but Im in pain and I have just woken up, so its only going to get worse. My shoulders hurt, left worse than right, which means my arms hurt. It feels like my entire body just hates me, it just cant find a nice thing to say about itself at all.
Im pretty well sick of so much of my life, these posts, my everything revolves around my health, how much pain Im in. One of the first things I talk about in my posts and the most common update I give is how much pain Im in, how shit I feel. Im really sick of it, Im sick of my life being so focused, centred around my pain, my medical situations.
I just went to the servo, turns out I have less money than I thought. I could only get a 20 pack of smokes which I will have to really work at to last the day. From there I dont know what Ill do, Ive got $17 to last about 5 days. I have some mac and cheese for tea, a bit of fluids but not much. I seriously cant ask Dad to borrow more money, its cost nearly $1000 for a couple appointments and a scan for my back, Dad paid for that, so asking him for more money for my normal expenses is out of the question. Mum has given me some money recently, I know she is under her threshold, the limit she has set that she doesnt want to go under. So I cant see her lending or giving more money. The thing is, even if they were able to lend me more money, I have to be able to pay it back and I cant at the moment and Im not sure Ill be able to do so in the future. So, even if I could borrow the money, maybe going without for a few days is better than borrowing.
The boil at the top of my leg is growing pretty rapidly, its pretty massive now and its really no wonder that its as painful as it is. It is literally squished between my junk and my leg. Everytime I take a step its just being squished between the two, kinda like a stress ball being squished between someones flat hands. The only difference being that the stress ball is full of puss and shit and there is a significant amount of pressure built up, but no release valve. Even sitting, everything in that region comes together, there is far less room sitting down, so its basically, less room for more stuff, which just means more pain. Being attached to my scrotum as well increases the sensitivity of it and it is very sensitive, I mean the region in general is pretty sensitive. Im pretty desperate for it to explode or for it to be drained, I can feel the pressure almost constantly and it building in intensity. Driving isnt fun, my legs are close together, everything is squished together and Im sitting in something that is just vibrating the entire time, it isnt the most pleasants of experiences and today I have quite a bit of driving, not just walking to achieve. I expect that by the end of the day, I will feel less than awesome. That doesnt take into account my back, which hurts a fair bit and will hurt more so by the end of the day. I just checked on the boil, its a lot bigger than I remember, its kinda massive, especially for where it is. It still doesnt have a head, but there is a dimple where it will be. I would think that unless it bursts before hand, tomorrow I will be back to ER to have them drain it or send me to priority care for them to.
I just got notification that my pay has been processed, so there is a chance that Ill have money again soon, but making it last for a month is always a challenge.
All I have to do is change my pants and Im ready to go today. I leave in about an hour for the first part of my scan and then its on for the day. Yet again Ive had almost no sleep. Ive been writing for a while today and for a while there I was dozing on and off. Today is going to involve a lot of driving, I have the scan in the morning, an injection to begin with, then see my sister, then the actual scan. Im assuming that Im going to be in a tube, which because of my weight I dont like, I feel like they need to strip me off, grease me up and force me in. Being in the tube isnt such a big deal, I dont freak out or anything, some of the ones Im having recently are pretty long, like an hour or so. Today's scan is supposed to take about an hour. I get bored or my brain freaks out and decides that it has a F1 engine, no brakes and shitty handling. Actually, that is a really good analogy for how my brain is so often. Once Im done with the scan Ill either drive up from the city to the town near where I live and have my ultrasound or go home, do a few things and then go into town. It depends on what time I finish with my first scan, the scan is in parts, over several hours. There is a gap of a couple hours to allow the stuff they inject to work through your body before the actual scan. The thing there is that, each part means Im having to come in, present to the counter and wait for someone to come get me etc. Its not just going one step to another.
I just realised that Mum trying to fix things isnt so much my issue, it does bug me, I mean most of the time I just want my Mum and her to listen to me, be there with me, not off thinking how she can fix it, before I have even finished saying what the issue is. It that she comes in with the ideas to fix months and years after your diagnosis. She is telling you to try all these things that you tried long ago and they failed then. But she doesnt understand why its such a big deal to try, why are you being so difficult. She feels like she is trying to help, shes trying to support me and Im kinda throwing it in her face, Im not, Ive been down this path already, you chose not to join me on that journey at the time Im travelling it. Its like you expect me to wait until you're ready to take the journey, but Im not waiting until you're ready, if you every become ready, to face that journey. Giving me methods to fix my issues, that I have tried months and years ago is not helpful, it only goes to prove that you were not paying attention months and years ago. Its not helpful, its the opposite. It makes me feel like she is not paying attention, which she isnt, but its not just that, she isnt paying attention, she has dismissed conditions etc now she all the sudden she believes me etc and she is trying to help, poorly and if I dont accept that help, I dont accept that help enthusiastically she has an issue. Its like you're the problem, she's trying to be supportive and you're throwing it in her face.
I've just got to the place for the scan, I'm struggling to stay awake and alert. I know it will pass that I will come good at some point. I thought driving down would actually do it for me. The moment I stopped though I went back to sleepy.
The boil has grown, compared to yesterday its showing a massive amount of itself. Once ive had my ultrasound I think Im going to try to get someone to drain it. Im about ready to get a sharp object and stab the thing myself. Driving down and around with my sister it has just rubbed against my leg, which is pretty damn painful. It doesnt get any better walking and sitting just squishes everything together which hurts quite a bit. I've got enough pain with my back and shoulders, its not a huge thing but adding the boil is pushing me over the edge.
I'm seriously exhusted, I'm having trouble with dozing off if I'm sitting still for a few min. I try to keep myself occupied. But the moment I get to lay down and rest I will.
I'm currently sitting in the hospital waiting for part 2 of my scan. Then I can go home and organise myself and go to my ultrasound. I'm keen to settle for the day but its a while away.
It's a bit sad but everyone else having the type of test I am are much more experienced in being alive, 70-80 year olds. It seems the way of it often that I'm surrounded by people in that age group. It's not that I have a problem with the elderly, Im just not happy to be 43 years old dealing with 80 year old problems.
I've gone from the bone scan, home and picked up referral, to ultrasound. I have been driving from place to place since 8am it's nearly 4pm. I'm done with the ultrasound now back at ER. Hopefully they will do something today, Im so close to finding a sharp pokie thing and dealing with it myself.
With the bone scan I had to hold my hands above my head for one scan and then hold them together down my chest/stomach but really tight. At the end of the first scan I had to use the arm/shoulder with the impinged nerve and bursitis to get up. All these thing combined and I have really hurt my shoulder, its really painful.
It's nearly 5pm, I've just seen the doctor in ER about the boil thing. He's changing my antibiotics but referring me to outpatients surgical to have them hopefully drain the damn thing. So I'd assume more money, I just want them to stab the blasted thing. Im waiting on him to give me my script etc so I can leave. Im so tired, I just want to go home and soon after find my way to my bed.
Today has been the most active I've been in ages and I'm really feeling it. It doesnt help that I'm effectively not sleeping nor am I eating anywhere near well or enough. I woke up in a fair bit of pain and that doesnt help, neither does all the other issues I have or the stress at home, in particular the shit between Mum and Dad. You know the quickest and simplest way to reduce stress at home would be for them to grow up.
I dont understand why, Mum makes a suggestion and I reply that it wont work, she then questions why I am denying her brilliance. I explain, its a little hard on this occasion as its about the boil and her idea causes issues with the mechanics of that region. So as delicately as I can, well not delicately, Im not one to care that much, but going into the details of that area and how it works and how doing what she wants would interfer and be uncomfortable, more than that, more than uncomfortable, her response is that it would only be for a day, she doesnt get it though, I dont think she understands what Im saying when I explain where it is. Im not going to show her, Im happy to show her my butt but we dont need to be that open.
Ive set my alarm for 10pm, Im going to have a smoke and finish my drink and go lay down, if I fall asleep then Ill wake up at 10 and have my meds, maybe have something to eat and go back to bed at some point. But for right now, I am pretty desperate for some sleep. Ive taken some extra pain meds, my back is really sore after the scans today, laying on those beds is ok for a short time, but pushing past 30-45min and I start to really struggle.
I went and laid down for a bit, I got no where near falling asleep, I kinda was just shaking, not cold shaking, but really small spasms, so I just couldnt settle, I couldnt really turn off. I got a couple of calls while I was laying there and I didnt answer, there was no caller announced, so I just ignored it. I ended up giving up and checking my phone and it was the local ED. The GP I saw earlier today had rung, I rang back and Im to present myself to the primary ER in the city tomorrow morning. Another medical outing. Dont get me wrong, Im very keen to get this dealt with, but thats my life lately, doctors, procedures, tests, etc. It gets pretty taxing, it takes it out of you and you end up feeling that its your life. If they do drain it tomorrow that will be the 9th procedure in 9 months. It does feel that my life has been taken over by my medical requirements, by my mental health needs. It feels like it is all encompassing, all I do, all I think about, the only break I get from it is to talk about my family, their medical issues or the conflict and stress in the household. Its really difficult, the rest of my family has medical issues, so its not just me that needs help or needs the spotlight for a while, everyone does. Dad wears the majority of the looking after the rest of us. Mum just doesnt really do much at all, even if she can, she will put it onto Dad because she doesnt want to. My sister is looking after herself as much as possible, she has lots of appointments but is currently in hospital. Dealing with it more on her own this time. Im not able to be there this time, Im too sick myself. Dad cant be there, he probably could but its not him. Mum, well she doesnt leave her room, even if she did and managed to get down there I dont know how good that would be for my sister. For the rest of my family, they have a couple of things at most that they are dealing with. They have a few major issues and they can be pretty overwhelming for them and I am not diminishing what they are dealing with. For me its a little different, I dont have a few things to deal with, Ive got a lot. Ive got multiple things that I am facing, there are a number of issues being investigated, there are conditions that have been diagnosed but require regular management, I have to learn how to manage my diabeties, I have to start with a psychiatrist again for my mental health, then there is these "minor" things like all the sudden having a heap of boils come up, I start dealing with that and what I assume is another one grows in a delecate place and may need surgical attention. Im annoyed but not even remotely suprised that it has to go to this extreme to be dealt with. The hard thing I find, really hard thing is that Im having to face these medical issues while struggling so incredibly badly from my mental health issues. Its like going into a fight with an arm tied behind your back and shoelaces tied together. Then there is the very minimal support that I get from my family. Dad has been better than normal, he has been much more helpful and there for me. But it is still limited and I am still waiting for him to stop, time will be up. Not having my mental health in check while dealing with all this is really difficult. It wouldnt be easy or simple to deal with but it would certainly be less taxing on my brain, on my emotions, I would be able to manage my perceptions, emotions and reactions better. Honestly today having a bone scan, then a Ultrasound, Im laying there in both instances, my back throbbing, trying my best to contain my spasms that have started because Im laying on the stupid beds, my shoulder is raging in pain, my tounge is so sore, then there is the boil/lump thing. Its now atleast 3cm circumference by doctors estimate, TMI its right up against my scrotum, up in the crevasse where the top of the thigh meets the body. It doesnt matter where or what I do with my legs the lump is pushed at by the leg which just damn well hurts. Every step I take feels like Im being stabbed in the testicles. Im dealing with all this, not having had more than 3 hours sleep a night for at least a week. Trying to keep my composure today, trying not to break down, to remain polite and kind to those dealing with me was probably the hardest thing I did all day. Despite all the pain, the mental health issues, the everything, I am incredibly proud that I havent become bitter, I havent become hard.
Its something people dont see, dont recognise, the intricatcies or hidden challenges of chronic pain or pain in general. You're not just in pain, you dont just have an injury, in my case multiple injuries, there are flow on issues that arrise. My spine has a number of issues, sometimes one or more of those issues make it difficult and very painful to walk normally, so I shuffle. But just because Im not shuffling doesnt mean Im not in pain. There is more than one injury at work, so pretty much no matter the circumstances I have sufficient issues to ensure I am always in pain in some form. My back affects my neck and my head as well, causing headaches. My arms and shoulders dont get let off the hook, but not as bad. Walking any real distance causes pain, in increasing amounts the further I walk. To the point that I will collasp if I keep going. Lifting something too heavy, too far, awkwardly. Simply bending over can be an issue if I have too much of a twist. If I sleep wrong, God if I lay in bed too long Im up for a bad day. If I sit with my legs out instead of down, it wont take long for me to be going through the roof. If there is a weather change coming, or more upon us now days, I can be absolutly crippled. The pain can be so bad, regularly, that I dont sleep or sleep much, if I do its light and broken. It also has a tendancy to cause me not to be able to eat. Thats just my spine, there is so much else to contend with, so many things I have to consider when I do, well, anything. I have to watch pretty much anything I do to make sure Im not putting myself in a position where I am going to cause my pain to flare up. This also goes for my mental health, I have to be so careful about what positions I put myself in. No one sees whats going on in your head, no one can fully understand or appreciate what is happening there, its really up to you to make sure you are protecting that space as much as possible, with the tools you have available. I have the wonderful thing of my head randomly deciding to create a completly new perception of the world for me. My head, my perceptionof the world is that it is spinning, rocking, wobbly, when Im moving it often feels like I have gone over a hill and there is that drop on the other side, that feeling hits my head. No one can tell Im experiencing that, no one can understand how that feels to be experiencing that. I have psychotic issues, I have a heap of medical issues, I have all sorts of issues and so far no one can tell me why Im having them, why they come and go. What no one has ever addressed, maybe even considered, is how scary this feeling is. Shit, how scary all of this is. Being bombarded by medical and mental issue after issue. How much of this will stick, how much will affect me for life (a fair bit I know), how many more limitations will I aquire, shit this spinning, wobbly stuff, is that permanent, is that a sign of really sinister stuff, has something gone really wrong. I do understand that if that were a concern my GP would be doing more but I freak out a little every time my head goes for a joy ride.

In response to: Re: So over it

Re: So over it

I couldn't sleep, no matter how I laid I was crushing the growth causing me a fair amount of pain. So I figured I'd go down to the city ER now, which is where I am now. Given its only a boil, going through triage was a lengthy process. At the end I let them know my mental health isn't good, I briefly told them what happened the other day in bed and about hallucination.
Dad offered to bring me down, I didn't hesitate to say no. He's crook and needs he's sleep added to he is just going to be sitting next me for hours. I also didn't want to listen to how long it was taking all night.
I've been here for the better part of 6 hours and I've just had some bloods done and promised that I'll be taken to an examination room soon but surgical is a few hours away. Seems like its all moving very slowly.
I've been examined, going to be referred to surgical could be to deep for ER. Doc is checking on blood test results and will get back to me. Im really hanging for a smoke, Im gonna see if I can pop out for one.
I did have a smoke. Ive been dozing on and off for hours. I got to 12 hours here and tried to leave but I have to have more antibiotics, its 3x a day. The boil burst at some point, its still a bit sore but lots better. They still want to do surgery though, clear it up etc. I hate hospital beds I'm in so much pain in my back from talking down on the thing, plus a thumping headache. Though the headache could be from sleeping without my machine. I've managed a couple hours here and there. It's been good to finally get some sleep but without my machine it's not like I'm really asleep.
It's 3pm I got here a bit before 1am. Im well sick of being in here. I spend so much time with medically related things that I get really over it and overwhelmed by it. Which I'm feeling at the moment, its just like its so much I'm just shutting down. I really wanna run away, I'm not dealing well with being here. I'll give them until the next antibiotics and I think thats it.
I got diagnosed with type 2 diabetes like 3 or 4 days ago and they keep checking my blood glucose levels and telling me what they are like I understand. I have no idea.
It's pretty crap, I realised a little bit ago that I was to get pain meds etc yesterday/today during my travels but didn't get back to my area until after the chemist had shut.
It's 4:30pm I just asked what time my next round of antibiotics are. Once they are done if they haven't done or are ready for me in surgical Im out. I've been sleeping without my machine which makes me feel crap, there is a reason I have it. I woke up at 4am a couple days ago and haven't slept properly since then. They are now ringing surgical to see where I am on the list. But I was supposed to be second this morning.
Well just as I was about to leave im next. Hell of a lot of mayhem but finally done. They ended up keeping me overnight which sucks. They weren't going to so I dont know what changed.
I got some sleep, they pumped oxygen up my nose all night and monitored stuff. Not ideal but I dont feel that bad this morning. It's 7am and now Im waiting on doctor to come check me out. If all good I can get Dad to come get me. I can't drive until tonight because of the surgery.
Docs been. Change of meds and dressing then I believe once all that's done and Dads here. I'm free to go. Which I'm really keen on. They have been good, nurses nice. But I've never been so keen to get out of a hospital in my life. The amount of time I've spent in them this year has been quite sufficient.
They ended up doing another lot of IV antibiotics, I think that was the 8th lot. Drowned in the stuff. The home nurses cant take me on, so gonna try and see if I can go through my clinic. 8:15 tomorrow morning I have bone density scan, then Ill head over to the clinic and sort that out. Im home now, but Dad and I will have to go back down tonight to pick up the car when Im allowed to drive again. My phone was going flat, so I couldnt use my Evernote App to journal etc like I normally do, which I found really hard. Its probably my main way of managing my mental health, my pain to a degree as well. Not having that available in any way, even on my phone, which isnt ideal, just made things so difficult, which is probably why I kept wanting to just run away. Right up to the moment I left I wanted to leave and be home 5 minutes earlier.
I take a number of different pain medications, an OTC, a really strong 12hr pain med and a shorter acting strong 4hr pain med for breakthrough pain. While I was in hospital they doubled up on the 4hr pain med, I think I had it pretty often as well, but they, for some reason, didnt write me up for my 12hr pain med. Which sucked as I was in pain, but I was also going through a bit of withdrawals as a result of not having them. I didnt have my CPAP machine and no matter what they do to help, its never the same so I dont feel well from that and I didnt have many smokes when I got there and couldnt just smoke as I normally would. So over the course of a very long time I think I had 8 instead of probably a normal 50-60, which I do realise sounds insane, but I am a very heavy smoker, that has made me feel pretty lousy too. I am really happy to be home, Ive had some of my 12hr meds, just a lower dose one so as not to mess up tonights dose. Ive got some more smokes. Im fairly awake, given how much crap sleep Ive had, Im actually really awake, though I dont tend to sleep much anyhow, so you know there is part of me thats used to it. Im probably going to lay down in bit anyhow, I dont feel bad but I can say I feel great, just a little crappy.
Its funny, Ive been hooked up to monitors pretty consistantly for like a day and a half, which isnt a huge amount by many standards, even by my standards, but I just went to get up and had that thought that, do I really need to, I dont want to go through taking this crap off. Its amazing how quick that things like that settle in, that you get accustomed to something so quickly.
We have 3 golden retrievers and a grovodal, all inside dogs, it is beyond chaotic. The Gravodal was pretty happy to see me home. Dad (and everyone) gets pretty frustrated with them because they are under foot all the time, but I tell you, I recon my Dad spends more time talking to the dogs than any of us some days. He just pointed to his watch to show them that it wasnt time for their tea yet and explined that they had another couple hours by showing them the hands on his watch.
I got changed, finally, I figured after a couple days I might not be able to have a shower just yet but I can get changed. I feel a little less like a grot. It always amazes me that you go into hospital, especially if its unexpected, but you see signs everywhere saying wash your hands etc, but you can spend a couple days in the same clothes, unshowered and thats not an issue. Unfortunately when I removed my underware the majority of the bandaging came with it. I had thought there was issues when going to the loo. I recon the doc checked everything he removed part of it but a nurse was supposed to come replace it before I left but never did. I rang my ward and they said should be ok until I go to my clinic tomorrow.
I was told many times while I was in hospital that I am on a lot of medication, they had to get my meds for me. One of the nurses said that I should have brought my meds with me, and my CPAP, she couldnt understand that I wasnt expecting what happened, like I expected that I would have surgery, but I expected like really minor, a local, poke and a prod and then on my way. Not being sedated and having to stay the night etc. But I did agree Im on a lot of meds, less now though. It was they psych meds that threw them though. Im not on heaps of either, combined, its a lot. But Im on a few psych meds and that just seemed to throw them. Im on less psych meds than Ive been on for ages, I kinda think I need either more or a far different combination. I dont really fancy living with hallucinations and that sorta stuff forever. Mentally Id like to be a lot healther and from my experience that means I need more medication, Im not sure what else would work. It makes me think though that, while I get general health and mental health is treated seperately for the most part, when you go into hospital for something general health related they should have sufficient education in mental health to appreciate the medications involved, particularly when you have complex mental health issues. I dont think nurses should comment on how much of a particular psych med you are on, I dont think they should comment on how many meds you're on in general. Its like they are commenting on how sick you are, or more so you cant be that sick to need that many medications. If I didnt need that many medications then they wouldnt be prescribed, its certainly not a competition Im in to be prescribed the most medications ever or something. I dunno, I might be a bit sensitive to the topic, Ive been sick for a very long time, medication has been the primary treatment for what surgery cant deal with. Most doctors, even though I stay with one at a time generally speaking, they just tend to add medication on top of medication. My new(ish) GP, Ive been seeing a while but she has slowly been lowering the medication Im on. Not getting rid of anything I need just stuff thats not working well, can be combined, etc. Some meds my old GP had me on basically cause it treated the symptom and let me continue with life, she looked into things further, figured out it was an interaction, changed a med and removed/reduced 2 others instead. She is extremely through, Im there with her a lot, weekly and has to be 30-45min a week, sometimes longer. She takes her time with me, which I am very grateful for. The clinic is really good too, the staff pretty well know me and they do their best to make sure Im looked after as best the can.
My poor Dad, he came down and picked me up this morning, we got home and he had to go get me my medication and some stuff for my Mum. He came home and went and did a few things out with animals, we have goat, sheep, chickens and dogs and he looks after them all. He just came in and said he is going to lay down for a bit and I asked if he was ok, cause he looked like shit, he didnt really answer but Im very confident he feels lousy. In about an hour we are driving back to the hospital I was at to get my car and then he is going to another hospital to drop stuff off to my sister before coming home. Dad has stage 4 Non-Hodgkins Lymphoma and has been feeling sicker. He is putting off stuff for his own care waiting for Mum to get her NDIS etc in order which for some reason she just wont do. From the way he talks it does sound that there are indications that he might be having to go down that journey again. Ive suggested that he give up waiting and go see his specialist and have scans again to make sure he doesnt need to go down the chemo route again, thats if hes choses to do so again, hes talked about not doing it again. I feel bad for him, there isnt anyone else to help, I dont have much in the of friends, any in that way really. My sister is the same. Mum and Dad have friends, family friends but they have their own issues with their kids and grand kids. We basically have no one else to help, especially not at the drop of the hat. Mum cant drive, she hasnt for years, though must retain her license, I know its a security thing but at the same time, just let it go. My sister is in hospital, so there isnt anyone but him, its so not fair though, it shouldnt be that way. I drove myself down etc to try and minimise this sorta stuff for him but there isnt anything I can do. I mean a tax is out of the question, that would cost way too much, money none of us has. If I didnt need a car tomorrow morning Id be telling him to leave it until tomorrow morning.
TMI Warning
With the pain meds Im on I struggle with constipation quite a lot, Im on laxitive most the time. I obviously need the pain meds but the side affect of constipation is very unwelcome. I wasnt on my normal pain meds which are supposed to help with the constipation, I was on different pain meds that are less so and I wasnt taking any laxatives, yet I dont think I have gone so much and so comfortably in a really long time. Im assuming it has to do with the IV antibiotics. I just looked it up and it gives you diarrhoea, Im assuming that being like I am normally, it must have just evened me out. Nice while it lasted, but it will go back to normal. Its a funny thing, I do feel akward, somewhat, talking about this sorta stuff. But at the same time not really. Its not overly pleasant but we all do it, most of us deal with issues to do with that stuff. Even the other side of the world, Im kinda open about that too, Im not crude about it, but unfortunately for me, I do have a few medical issues that deal in that region or are accessed by that region. Im not the only person to experience this, Im sure there are people on here that do too. Amongst other things Im sure there are others with bladder cancer. When it comes to the medical world it doesnt seem that any part of the body is any more special than any other part, certainly not how it comes across.
I just got home from picking up the car, I took it quite easy on the way home. It was uncomfortable but not painful. My Dad went to see my sister and drop some stuff off to her and come home, he walked in 10 min after me. I know I was taking it easy but he must have had wings.
I was thinking on the way home that this has been quite a few days, I had the bone scan with spect Friday morning, that was 5.5 hrs long with a couple hour break in the middle where I saw my sister in her hospital. From there I went pretty well directly to having an ultrasound and then back to ER. I went home and a few hours later I made my way down to the city again to ER there. I was there for the most part of 2 days and had surgery. Im home now but tomorrow morning Im up early for a bone density scan. Then off to get bandaging changed, with any luck I wont have to wait long for them to do that and I can go home and hopefully have the afternoon to rest. Ive got doctors Tuesday morning, bandaging at some point, then the SANE councillor. Wednesday is just bandaging. Thursday is the new psych and Im with the Nurses for the Chronic Disease Manage Plan and I have to take Mum to the doctors as well. and Friday is just seeing my GP for the Chronic Disease Management Plan. Im on leave from work but soon Im going to have to take a holiday from medical shit. Stuff like this really makes me question if Im actually going to be able to return to work. As much as I desperately want to. Even if they do get my spinal issues sorted, they get my pain under control, how do we go about dealing with all my other medical issues and work. I know that the number of medical appointments Im having now isnt forever but I do get concerned that there will be a need for continual medical treatment and potential intervention as I am having of late. I hope I can get most of it under control, to a point where Im self managing for the most part. I imagine the diabeties will take a while for me to get my head around. I have to sit down and learn about that at some point soon. Looking again at the stupid list of medical issues though, most of what I have is managable, on the provision that they can do something more about my back then I should be right. Probably the biggest issue I have to contend with other than that is the diabeties and thats managable, I just have to get my diet into gear (I think).
I just spent some time reading about diabeties, I would think I have a bit of a journey on my hands. Im a big guy, so its going to take me a fair while to lose that weight, which will be a big part of managing my diabeties I would think. Its gonna be hard as exercise will be so hard for me, given my back etc. I got to do these checks of my blood glucose levels, which I recon I had to do before. My records say I have previously been diagnosed with diabeties but then was told that I didnt have it so never did any more about it. I really didnt do anything about it at the time, it was treated so minor, like everyone gets it nothing to be that worried about. My GP has made it a bit clearer this time that its something to be a bit more concerned about. After a short read about it that I just had, I probably understand more about it now than I ever have. Ive always know that diabeties isnt a good thing, Im not oblivious to that, but we did the test, followed up with another that was negative, it was that I had a false positve, I remember now. All my checks that I did were within range. Now however, I dont think quite so much. I dont know what my range is supposed to be so its difficult. In hospital they kept telling me what my BSL was when they tested me, I really had no idea what it meant. Like is 7.1 good, bad, terrible.
I really expected that I would have a very early night, given the sleep and events of the last few days I thought would have me done but its 9:30pm, I havent had my meds, I havent eaten tea and im really only just starting to get tired. Dad has just headed off to bed, well he will read his Bible for a while, while he has a coffee but his day is done, which I am glad. Im glad that he can relax. I told Mum that Dad had to have a rest this afternoon, its unusual for him. All she had to say was has he checked his blood pressure, which you know, I get but isnt the be all and end all. He has incredibly high blood pressure, he's got stents already, but he knows its high, checking it wont prove anything. Her just you know helping Im sure would help, but she is stuck on this, I did this and this on my own for years nows its his turn. She didnt look after us kids etc as we grew up etc. on her own, not totally mostly, but she also didnt do it with him sitting doing nothing, nor her having cancer. I cant help but think that she has become incredibly selfish and inconsiderate, particularly when it comes to my Dad.
Its hard, I get some of Mums side, not all and some of Dads but not all. Thing is its never been much different, they for as long as either my sister or I can remember, they have never seen eye to eye on much. Mum has pretty much just verbally bashed and repeatedly done so until she got what she wanted. But at times she has also allowed Dad to do as he believed, but it was always held against him, especially if it went wrong or the course changed. When Mum and Dad got together, well a while after Dad worked and Mum didnt have to, she had friends, kids, pretty much all she wanted, or now claims she did. But Dad believed that he was called by God to go to the country. Mum didnt feel it but they went anyhow. To my mind that makes her complicent with the decision, God or not. From there, she as she tells it, had opportunities to leave but wasnt strong enough. I dont hold that against her at all, in some ways I wish she had, I do wonder if she had how different things would be. I dont think it would have worked, Mum has significant mental health issues, that for the life of me she refuses to properly treat or manage. Even now days its still a fair roller coaster. If she had left, it would have been on her to look after us kids and provide for us and understandably so, that would have been too much for her. Dad believed that he was doing his part in providing financially, that was his part in it all. He looked after the outside of the house, he looked after the religious side of things that was his role. Mum wanted more and chose to work, she will say differently but she wanted a bigger and better house, she wanted a horse etc. Again, I dont hold it against her, we were at school, what should she do with herself, she had a lot more to give and she did/does. Its an annoying thing for me, I think Mum despite everything she has been through in the past few years, still has a lot to give, if she wasnt forced into retirement due to injury, I think she would be a lot better off. The story is though, life doesnt go the way we plan it, ever, I sure as shit not following my plan for my life. Mum is fighting that and blaming anyone and everything she can. Dad is trying to change, he is trying to get the mental health stuff, or atleast appreciate it. Mum refuses to see any of it. Dad is still Dad, he is still the practical, less emotional etc. He is never gonna lose that. He is going to be frustrated by being jammed into a box he doesnt fit. Its a fair shit show. I was gonna write more but Im tired now.

In response to: Re: So over it

Re: So over it

Wow @ClockFace ,

Well done for making it through! It's drama after drama! I'm so sorry you have to go through all this. It's like a never-ending cycle of medical.

I'm sort of glad your dad offered to drive you to and from the hospital. That was very kind of him. He must go through so much considering his own condition and then your sister and mum. Argh... then the dogs. My heart races when I think about it!

I wish you well as you heal. I hope there won't be any infections with the boil....ouch! I had a boil as a child, and to this day, I still remember the pain....

Please take care and we'll catch you for your next episode on your journalling 🙂

Thank you for sharing.

In response to: Re: So over it

Re: So over it

I went to bed and I really relaxed, I might have dozed off but I didnt fall asleep, not properly. Im up, but Im not really awake, Im kinda drowsy. Ill probably go back to bed shortly and have another go at it. I am really tired, I just cant seem to move over to sleep.
Really odd thing that has started, I wear glasses, I cant see long distances. Until recently, I wore my glasses all the time, reading or driving it didnt matter. Lately, though if I want to read the instuctions on a packet of anything pretty much that I need to take my glasses off to read them. Its weird, I dont have a problem with my eyesight otherwise but just that and I think its strange. I havent had a noticable change in my eyesight since, well I got glasses when I was like 12. They have gotten worse over the years, much slower than they expected, but not noticable just slightly year on year. My eyesight isnt good but with my glasses Im ok. They at one point was predicting that I would lose my eyesight when I was around 80. They stopped talking along those lines now, it might be that I changed from a local optomitrist that I had when I was growing up to Specsavers when I moved down closer to the city. Thats one thing about growing up in the country, you generally have the same person looking after things for you for the better part of your life. If there was a change in people then there was a detailed hand over. These people dont just know your medical history, they know you, they know what you have been through, how you deal with things, your parents, your family, etc. They know more than just your medical statistics they know who you are. You dont get that with doctors, optomotrists etc. in the city
Being in pain, having a heap of medical conditions and a heap of mental health conditions seriously has its challenges. Im constantly battling at least one thing, if not multiple things at once. Things like being stuck in a hospital bed really agrivates my spinal issues. Being in hospital in general apparently aggrivates my mental health too. Somewhere committed to my health and wellbeing has such an impact on it. That said, I had an issue which I needed urgent help for and they dealt with it, at no cost to me. It would have been awesome if I had left there all fixed but thats not my lifes journey. Its not just the issues I deal with, its the side affects of the treatments for them that sucks. That is hard to deal with, the thing that is supposed to make me feel better causes something else that doesnt ie pain killers and constipation. The first time I had that as a result of the pain killers, I was so unwell, seriously so sick. Now days its not as bad, most of the time, its primarily that I get well backed up and I look like I have put on a heap of weight, it is very uncomfortable. I often blame my body for failing me, but truth is in so many ways I failed it. I have never really looked after it. Once I tried, I really did, then I got hurt and I stopped trying. For a long time I didnt see the point, at that point I did feel my body had failed me. I might not have been treating it ideally but pretty good and still my back just crapped out. I did put my back through hell, it was part of my job, it was expected so it must have been doable, it must have been safe. But apparently not, turned out their workplace safety record was horrible and it was well known, though my parents still sent me there to work. I had no idea. I dont blame my parents, but the company I worked for. After years I tried again, I tried several times but I could never stick to it. I couldnt excersise anymore, I struggled with just managing through diet so I would always end up back wondering whats the point. I suppose now with the diabeties thing, its not really a choice, if I want to stay out of hospital, not be sick, etc then I have to stick to a healthy diet etc. Ill have to make some changes and stick to them. To be honest I dont know how I will, I want to, I get its long term, my life but still I dont know how I will, if I can. But I will try and try hard.
I just woke up in quite a bit of pain, Im hesitant to write this but while I was asleep there was an event, which I was pretty well unaware still occured. It hurt/hurts a lot. Im not terribly happy about the situation, its not a pleasant way to wake up at all.
I woke up about 3:45, its now 4:45, the pain isnt so bad now, but I dont know if its worth tring to go back to bed at all. I have to be up in a little while for my bone density scan. Im tempted to go for a drive into town and do a couple things at the servo. I might put off a little, I need to go to Coles and they open in an hour, so I could do that before I go off an do the other crap for the day. Id probably get a break between activities this way, where I wouldnt have before.
I went into town, did a few things, sorted out food and drinks for a few days. I had to get the bags packed lightly but I managed. By the time I got home I was starting to get dizzy again. I really would like to know the cause of it so hopefully I can stop it happening. I was pretty sore too, my groin was pretty sore, my back was getting really painful. The damn hospital beds get me everytime, the scanning beds dont help and I assume that the bone density scan will have me on another one. Ive taken extra pain relief because Im in pain and I expect to be in more soon.
I went to have my scan and they couldnt do it because of the scan I had on Friday. I wasnt terribly upset, they have reschedualled my scan for the 3rd. I popped over to my medical clinic and they said they were fully booked but checked with the nurse to see if they could squeeze me in. The nurse that was on helped me out heaps a couple years back when I had a lymph node removed. It should have been straight forward and simple but the site kept leaking fluid, like heaps of it, almost flooding and she would see me a lot of the days to help sort that out. It went on for weeks, like weeks and weeks and she was so patient and kind the whole way through. It wasnt easy for me, it was in my groin area, a bit lower but it was a difficult area to work in, as I say, Im a big guy and my skin isnt fantastic, I dont move great and I was really frustrated by the end of it and she shared in that, for my sake, not hers. Anyhow, she heard it was me and true or not she made room for me right there and then and then set me up with appointments for the week, she knows my history and knows that its unlikely I will heal sufficiently in 3 days as the hospital expects.
It was about here that my day went to shit. I was driving home without any concerns when a kangaroo bounced into my vision, I hit the breaks hard but it was inevitable the kangaroo and my Mums car met with great speed. The kangaroo was not in a good way at all, but the car well, it really didnt fair well at all. I came away in a reasonable condition, my back was quite sore, but that I think had to do with the amount of standing I had to do after the accident. My surgical site is pretty sore, I cant see any reason that the accident would be a part of that, I think that too would be the standing etc. I called the police straight away as I couldnt get off the road fully. A couple people behind me stopped to help, we got the kangaroo off the road. They left, I had called Dad. I was not far away from home so he was down pretty quickly, he helped with the tow truck etc. Of course he made sure I was ok. The police did their thing and will ring later today with a report number. They put the kangaroo down, it wasnt humane to let it live but still not fantastic. I get these things happen, but causing pain to an animal, no matter the circumstances, is not something I enjoy. I grew up in the country and hunting etc was the norm, but while as a kid I did get into it, its not something I kept a stomach for as I aged. Now I dont have the stomach for causing pain for any reason. I get that its a necessity in many areas but not in mine. So I felt quite aweful hurting that animal, there was nothing I could do to prevent it, but still I felt terrible and worse still when the animal was put down. As I say, there was nothing I could do to stop what was happening, nothing I could do to stop it coming to pass. It did and that was the worst thing of it all.
Dad is starting to get panicked by the loss of a car, trying to get everyone to appointments with one car is gonna be a challenge. I have a lot of appointments, Mum not so much and Dad, well he needs a car to attend to his appointments and my sisters stuff. Im starting to get really tired.
I was rapidly overcome with the need to sleep, I figure it was the adrenalin wearing off so really quickly. The police man rang and roused me, he gave me the report number which I msged to my Dad. Im assuming I dont take kindly to the new antibiotics that they have put me on. The rapid exit of my bodily contents would indicate as much. Im still really tired, kinda keen to head back to bed. My wound is ok, the pain is from the bandaging they have put on. With my underwear it putting pressure on the wound.
I ended up back in bed, I laid down again for a while and I did sleep. Im almost tempted to go back to bed, Im still pretty tired. Its hit me quite hard this afternoon. I cant believe how much so. I didnt sleep well over night, I had to go back to bed here, I just got up again. It is like I feel tired but then I just have to sleep, I have no choice. Its weird, I dont think Ive experienced anything quite like it.
I just started watching Painkiller, it will be interesting, its about the American version of what I take. Its got me interested already, I get that the show is more than just the pain killer but while I dont like beng on the pain medication Im on, if I had my way I wouldnt be on them at all, but that would also mean that I wouldnt be in pain and ideally thats what I would really like to be. I know that there are risks to the pain medication Im on, serious risks especially given the strength of pain medication Im on, not taking into account the other medications I take. I dont play with my pain medication, Im careful as I can be. But I know, no matter how careful I am, how careful my GP is, I am taking a medication that carries a fair bit of risk. The thing is, I am willing to take that risk and honestly some days, Id risk more, because I dont want to be in pain, no one wants to be in pain. The amount of pain Im in the majority of the time, Im willing to take the risks associated with the pain medication. Im know Im not the only one, I know there are so many more people in the same boat. Im happier to have a shorter life, if it means that I am in less pain. That may sound, I dunno, but thats the reality of chronic pain.
Dad and I just had a chat, we have had one earlier today as well. The things at home are difficult, particularly between my Mum and dad. Mum makes it so hard to accomplish anything. I mean they are wanting a new fridge for her room, Dad has researched fridges, he has got pricing, specials, etc. there was a rebate for a while, she let it all go away and now wants to get a second hand fridge for $100. This morning Dad was starting to go down the path of just doing things without her approval. Then my car accident and the idea that the car might be a write off, its Mums car in name only, Dad bought it for her to drive. If it gets written off there is a chance (somewhat likely) that she will want the money for the car. Which of course he needs to buy a new car. He is of the thought that if it goes that way that he is going to go forward with a seperation of property or something. That will probably end up result in divorce I would think.
Im not going to say one way or the other what he should do or even what Mum should do, I have my thoughts but Im not the one married and I never have been. Ive said to Dad that he has to do what is best for him, he needs to look after his health and mental health. His response was that he needs to look after everyone. Despite everything he is going through he is still trying to protect the family, protect my sister and I.
We are under so much stress as it is, its so hard living in a house so divided. We all have our challenges and we all contribute in our own ways. I know Im not the easiest to live with, I have my quirks and I am pretty set in my ways. I have my boundries and I do stick to them, I have to. I learnt the hard way about not having or sticking to them, Im not perfect at boundries I kinda made it up as I went along before I knew it was a thing people do. But my family, Mum in particular is very good at persuading you to do what they want you to, not what is right for you. Others contribute in their own ways, but if Mum and Dad went down the divorse route, the stress at home would be intense
I went to bed and I didnt even get an hour of sleep and I woke up. It wasnt a simple wake up though, it was like I was trapt 1/2 way through waking up. I was stuck in this weird zone of not being awake but not being asleep. I didnt like it, it wasnt scary, it was frustrating and I kinda cracked it and made myself wake up and got myself out of bed. But I have been a bit shaken by the experience now that Im actually awake.
Dad and I talked again late last night and I talked about some of my thoughts on people. I dont believe people are inheritedly good or bad, at any point of their lifes. We cant say that about others, we cant lable others as strictly good or bad. People shouldnt even place that lable upon themselves, people are just people, not good, not bad, just people that exist. They do however make decisions and they can make good or bad decisions, but the determination of if it is a good or bad decision has a number of factors. The intention behind the decsion made might have been one thing but the outcome might have been very different. Decisions are made based on the information provided at the time, regardless of how correct the information was/is or more importantly your interpretation of the innformation. Behind all of it though is who we are as a person.
We are each a product of our upbringing, our parents, then extended family, friends etc. to an extent we have an impact on this as well, we chose what we take on, we chose our whole life though as we age we become more aware of the choice an;;;;;;;;;;;LLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLd more capable of making the right decision for ourselves. As children we make a decision but with less experience, less comprehension and with less knowledgable influence over the decision as to what we accept, as we age we have more influence, some people understand this more than others. But over our lives we grow who we are but a huge amount of this is determined in our early years. The conversation actually started with me saying that I dont regret who I am, things have happened in my life that have been traumatic and that has influenced significantly who I am but I dont regret who I am. I might not like who I am at times, but I dont regret it. Again, a lot of who I am was defined as a little kid, what do I have to regret, my involvement was so minimal that its not funny. Even as I got older, things happened to me, I dont regret that I wasnt in control, my reactions I was, but I dont think there was a way for me to react differently
Our decisions are made as much based on what we are presented with as they are about how we interpret the information provided and our interpretation comes from who we are. Who we are, who we chose to be determines what we view as good and bad and by extension what our society we were born into believed of those things. Society changes with each generation, previous generations not so much and not as quickly. But its also how we in one society can view a person in another as so wicked. Being that a person is the sum of things as said earlier, it stands to reason their definition of good nd bad differs from ours. Im not saying that mass murder of a group of people based on any particular reason is something we can explain away based on their childhood etc but it might give us understanding of their motivation and justification, even how a society can be ok with it for so long. How they can support it for so long, elect people to position of power who have what the rest of the world sees as evil.
I have woken up again, I got a couple more hours sleep. Im really tired still and might head back to bed in a minute and get some more sleep. Ive set my alarm, I doubt Ill need it, but just in case. My guts are seriously churning, I really think these antibiotics and my stomach are not friends or will be. Frustratingly, not something I was going too say because TMI in a big way. Because of where I have been cut open, my back and my weight to an extent, cleaning myself up is now a real challenge, it wasnt simple before but now with the surgery its really hard. Im getting around it, with my back, particularly when its bad I have had to learn to compensate for different things, its a neccessity that you do, you cant continue with life as normal, you have to adjust, you have to adapt to new limitations and restrictions, if you dont you are just going to ram your head into the wall repeatedly and you just get frustrated beyond belief. This is no different, its just for a shorter period of time.
I went back to bed and got a few more hours of what was actually good sleep. I woke up and within a really short period of time my sister was on the phone. We talked for a while but I really needed to get to the chemist and get my main pain killer as I had run out, with all the issues over the last few days I havent been able to get to my chemist and get them. By the time I was able to be in a position to go and get them I had started to go into withdrawals and I really didnt feel good at all so Dad went and got them. Im amazed that I went into withdrawals as rapidly as I did, I did sleep in, it was well past the time I would normally take my meds. I took some of my short release medication to help as I really felt aweful but once I did get my normal pain killer it took about 1/2 an hour and I was feeling better.
I had my appointment with my GP, she had the results of my bone scan with spect, where my vertebra have crushed there is evidence of healing, which is a good thing. However, there is evidence of arthritis almost from neck down, particularly in my sacroiliac joint. I questioned almost immediately about my pain medication and she said that I have had many injuries which needed pain medication and over time it needed more and more. Eventually, the injuries turned to arthritis, the pain is still there etc but almost the body needs to be re-educated to understand the new pain that Im in. So, in a while we will start reducing the pain meds, which I am really happy about. First we have to deal with the diabeties stuff.
I was going to go back and talk to my Mum about ringing about her NDIS, but I got caught up with other shit for myself. Dad has decided to back off where it concerns Mum again and is not really speaking to her. I get it, he cant handle everything, he cant deal with her having a go at him constantly and I dont think he can cope with it just at the moment. I think he is barely holding it together as it is, so I understand. My sisters in hospital so it means it lands on me to try and get her to do the shit she actually needs to do. I asked her this morning, what does she need from me to get this across the line and I didnt get an answer. I dont understand what the issue is, why its so hard to make a phone call, to follow up, to be proactive. The NDIS stuff is for her but it helps the family too, you can actively help the family, but heres a way in which you can help. Ive been trying to get her to call for a couple weeks now, its a phone call, it shouldnt be this much of an issue. We havent even got to her scans etc that she needs. Dad is struggling, I get it, so am I, but I now have the added frustration of dealing with this shit with Mum because Dad wont talk to her. Ages ago I told Dad to sit with her and do it with her, but no. He is supposed to be her carer, but she wont let him in on appointments etc so he doesnt feel he can be her carer, which I completely get. Mum does her best to make it as difficult as possible for him, I mean she will want his help with something, he will come to do it and the time wont suit her or something and she will tell him to leave, though using a four letter word or 2. She wont tell him what she actually wants, he should know, he wont vary his approach because he doesnt know any better. Just, if there is a TV show on, you want a nap or what ever it is, one day just give it up and make the damn phone call.
Tomorrow is my quiet day for the week, I have to go get my bandaging replaced tomorrow but thats it. So tomorrow is the day I lodge my application for bankruptcy. I had a call from one of my creditors today, I was cordual but I explained that I work in the same field and I understand what she is trying to achieve. However, my medical situations affect on my financial situation is such that I am and have no ability now or in the near future to be able to maintain any form of payment arrangement that would be acceptable to them and affordable to me. I calmly advised that after discussions with my financial councillor and careful consideration, with sound knowledge of the bankruptcy process etc due to my employment that I would be filing for bankruptcy, which in the end she actually stopped saying but and it sunk in. It seemed to take more convincing of her that I bankruptcy was the only and best option I had than it did to convince myself.
Im really tired, the last few days has been intense to say the least. I could have really done with a nap but its nearing bed time so I might as well stay up, have my medication, tea and then go to bed. But I do need to stay up later than I want because I didnt take my pain meds until late. I spoke to Mum today about the test results that I got back. I talked about the diabeties several times and each time she brought it around to my acne and boils. There may be a corrolation between my boils and the diabeties, I cant think so much with the acne as I have had that since I was quite young. I dont understand why we had to keep talking about my acne when I was trying to discuss something much more important.
That said my acne and the boils have been on my mind quite a bit of late and I want to address them once other things die down. They make me feel like I giant ball of puss and shit, which isnt helped when my Mum and my sister point out the grossness of my body, be it weight or the acne/boils. As a young person my Mum would pick at them, a fair bit, despite my best efforts to stop her, to tell her not to, she would make me let her do it. Like all things she wanted, she would argue, fight, yell, scream until you gave in. She would do that to a teenager, one who was sensitive about his body, found her picking pimples painful, they are deep, she was not gentle about it, she would climb over you, move you around forcefully etc. and she wasnt small. I was against picking pimples, it wasnt good for the skin, it wasnt good for controlling the issue, it wasnt good. Mum however, ultimately enjoys it and that matters more than my feelings, what I wanted. Mum wants to now sit and pick my pimples, as many as she can, then scrub the skin with coconut oil and sugar, then clean the skin with the stuff they use before surgeries, then use that stuff for a few days. As I said to her that it wasnt going to happen, unlike when I was a kid, Mum has learnt that if I say no there isnt much point putting up a fight, I mean it. I said, firstly, your going to cause me to be in a lot of pain, potentially for days, you will push on my shoulders which have their issues and will be aggrivated by that. Same goes for my back, the pain it would cause would be immense. Then the stuff for the surgeries, they get you to use it once, on certain surgeries, its not actually good for your skin biome, it kills everything and we need the bacteria etc on our skin to be healthy. Then to do it for days you could actually cause real major issues for me if I just went ahead and did as you command. The next thing was to get enough magnoplasm to basically cover my skin and see if it drew out the acne. Ill use it on boils occassionally, small areas, targetted use. I wont encase myself in it, wrap myself in pillow cases and a old sheet (her words) for 24 hours and see what happens. I am very positive thats not its intended use.
I also said that say one of these worked, it would clear up my skin but then there is a good chance that the acne would return, it would not actually treat the issue it would get rid of it for a brief time thats it. My next thing was, rather than playing like this, rather than experimenting with my skin, the largest and one of the most important organs of the body how about I see a dermatologist, maybe see if there is a tested medication I can try. I dont want to take more drugs in particular, but if it treats the condition its worth while, more than experimenting for her amusement. End of the day, I dont really care what she wants to do, I dont care about her insane ideas that have essentially no merit, I certainly dont care about her enjoyment at my expense, Ill be seeing a dermatologist and getting his/hers advice and treatment plan.
Because Im in the pain Im in, I sit a lot and I write but I watch streaming media a heap too. Ive run out of the main stream stuff on the main platforms some time ago. So I kinda troll the less popular shows/movies and I end up watching quite a bit of garbage but often enough I come across stuff that I really get, I really enjoy and most others wouldnt. It drives my sister and Dad around the bend listening to the shit I watch, especially when I admit its crap but I love it and keep watching it because Im enjoying it, not so much if I leave it going just because its noise. I rarely watch movies I have seen before, there are exceptions like the Matrix, Ive lost count how many times Ive watched that. In general though, if Ive seen it then Im not going to watch it again. If its been a long time, I dont remember the premise, the plot etc then I might rewatch, so often though I start, remember and I stop.
My back has been okish today, its getting a bit sorer this evening, my neck is pretty painful though, ever since I was in hospital I have had more pain there than normal and its the stupid pillows they have. For quite a while there I was only provided a 1/2 pillow, it was in a normal pillow case however, the dumbest thing ever. A cost cutting exercise I assume. My shoulder has had its moments but generally ok. The surgical site is ok, the bandaging is uncomfortable, it digs in a bit, squishing between my leg and dangly bits. I will be glad when I dont have to bother with it anymore. My tounge seems to be ok most of the day, however by the end of the day its pretty aggrivated, though its not getting as swollen as it was getting. I am stuggling to bounce back from the past few days, being in hospital is always tiring, then add surgery it takes it out of you, the number of procedures Ive had I am well aware of that. Its not having my machine that has caused me the most issue, I got more sleep in there than Ive had in a while, but without my machine, even with oxygen to help, its not restoritive, its actually more detrimental than it is good for you. Its not so much about oxygen loss while you are breathing with sleep apnea, its that you stop breathing while your asleep. It will be a few more days before I recover just from sleeping without my machine. Hitting the kangaroo, while it didnt cause me any injury, the shock, adrenaline rush and it suddenly stopping as it did, that will play with things for a little while too. There are a number of factors that are contributing to how I currently feel, simply the events since the begining of the year, starting with my sister, it has been full on and I think that I have been running on empty for a while now, the events of the last few days have just pushed me just that little bit further. Ive got a quiet day tomorrow, other than the emotional aspect of filing for bankruptcy it should be a recovery day. Thursday is a big day but Friday I only have the one appointment. Then it goes pretty quiet from there for a while, at this stage, Im going to do my best to remain calm and rest for a little bit and try and recover.
The news today about my spine I took immediately badly, but reality is I could be dealing with far worse. It has now given me a new sense of hope, hope that I may be able to actually return to work. I know I have more than just that to contend with but I feel like its actually possible now that I can get on top of everything, start working towards returning to work. I know it will be a gradual return to work and while I have the goal of returning to work fulltime, I am prepared that I would return doing less hours if need be, at least I would be back at work. Financially, how it would work, it would depend on the number of hours I could do, but there would be the need/goal that I would work sufficient hours to cover my financial needs and not be reliant on Dad/Mum, particularly for my medical costs. My Dad and I talked the other day, he still had it in mind that at some point I would be able to leave home again. I explained it very clearly that given my medical costs that financially I would not be able to leave as much as I want to. I think Dad had it in mind that at some point my life would return to what it was like before my mind betrayed me and I would be healthy(ish) again, financially I would manage and I would be able to manage. None of those things are really on the cards for me again. As much as I would like them all to be. Even with the latest news medically my expenses are going to remain high. I expect that there will be an increase in medical expenses based purely on the diabeties and potentially there will be an increase in my food costs to accomodate for an applicable diet. If I cant work as many hours due to medical appointments, treatments etc. that will obviously be an issue, but potentially likely. The likelyhood of ongoing surgeries etc has been all but eliminated which would reduce my medical costs a lot. But with the projections that I can make with the information to hand, I would be looking at needing an additional $1000-$1500 monthly to be able to meet my bills, medical costs, etc and there is no foreseeable way that I will be able to obtain such a regular increase. This would also just cover manditory expenses not provide for any quality of life. Whats the point of it all, without there being a life to actually live.
That is a point that has been on my mind a lot lately, what am I doing all this for? Why am I bothering to go through everything I am? The only answer I have at the moment is that Im supposed to. Im not supposed to just give up, to let it just follow its course until its end. Im not supposed to do that, Im supposed to fight. Most of what I have isnt fatal even if I dont participate in treatment, diabeties is though, if I dont get on board there it could be horrible and then end. That is the only other reason I keep dealing with the medical stuff is, if I dont, my life would be horrendous, my existance would be just one of serious suffering. So, I fight to minimise the suffering, I might not want to be here, but I dont want to be in pain etc either. There is also hope, hope that the pain will go away or atleast be tolerable, manageable, that I wont be sick, etc forever. Maybe most importantly, hope that one day I wont be gripped by depression and the desire to end my suffering. I really want though and I think that its a neccessity that at some point in this process once get to experience life again. If I find that at the end of the road, if my physical health is managed and maintainable, I find myself just existing, plodding from one day to the next I dont know if I will cope with that. I dont have a life, I am missing so much because of my issues, if I still do without my issues what does that say. I have enough health and mental health issues that it will be a long time before I have to ask. I want to experience life again, if after all this I still cant, there is something still holding me back from it I will really struggle with that. When I say I want to experience life, I dont have a definition of what that is, but its not what I have now, and a new flavor what ever doesnt cut it. I think its connection with someone or something that has significant meaning, maybe a passion for something, that good for me. Something more than I have a new doctor/specialist and they are super friendly or a new flavour something that I really like.
I exist, I plod one day to the next. I fill up space, thats all, Im not making anyones day. By any standards given by my society, my family or by societies of other cultures, Im not meeting what is expected of me. I dont have a wife, Im still happily single, I live with my parents blah blah. I dont feel bad, what society has/had planned I didnt want. But I dont know what I want in its place. I do know that I dont want to just exist, I want to matter. I want to experience life, I want to experience passion, I want to be the light in someones darkness.
I dont understand, I was pumped full of IV antibiotics, bags of it and since then high dose antibiotic tablets and I just felt a new boil growing, what the hell. I shouldnt have a thing growing as best I can tell.
I was really tired and dozing off at the table, that was a couple hours ago, Ive perked up again but I still think Im going to try and get some sleep, its 2am I should be in bed asleep. The pad over my wound fell off, there was nothing on it, no gunk, no ooze, nothing, so its just the tape there now and thats the way it will stay. I dont think they need to bother with the padding, tape etc will be sufficient and its far more comfortable.

In response to: Re: So over it

Re: So over it

Hello @ClockFace I drop by from time to time to see how you're going. I'm sorry life keeps throwing curved balls at you.

Thankyou for seeing that the kangaroo was euthenased.

I've just sent you a cheerio from the Diabetes and mental health thread.

I'm glad there's now a clearer picture of your back problems, hopefully it will translate into better care.

Recurrent staph infections are a worry. I've had some when particularly run down.

For all his shortcomings your dad sounds a Trojan. In his generation to be the family provider was the highest goal. Maybe you inherited his strength of character.

Best wishes

Dimity

In response to: Re: So over it

Re: So over it

@ClockFace you were so lucky to be OK after the accident. And it sounds as though you have a great gp. Maybe there are some wins.

In response to: Re: So over it

Re: So over it

I spent several hours last night dozing or sleeping at the table until I finally got myself to bed at about 3am. Ive woken around 7am, so not a heap of sleep, though not hugely unusual. I do expect thought that I will end up back in bed when I get back from having my dressing redone.
I feel like the bottom of my stomach, waist? and pubic rise is swollen and/or covered in boils/sores. I dont know how to describe the area. Im a big guy as I have said previously, I have a large stomach, at the base just above where your legs meet your body is where my stomach starts to protude from, but it hangs lower than this. The over hanging stomach rests on the lower part of my body and particularly when sitting, the top of my legs. It rubs when I move, that area gets quite a bit warmer than the rest of me. I get a fair amount of sores, pimples and smaller boils in this region as a result. Today however it feels quite a bit swollen, it feels like there is a largish strip of me that has had someone inflate it with a air compressor until quite solid. The feeling isnt good, I have tried to find any sores or boils in the area but I can only do so by feel, as I cant see the area. It could just be my stomach, I have a bit of diarrhoea, Im assuming from the antibiotics, which could be upsetting my stomach in general and thats what I could be feeling. My stomach feels pretty solid, not hard but firm.
Im going to have a shower in a minute, Im feeling pretty gross today and Im struggling to wake up this morning as well, so Im hoping a shower will help with that too. Its not overly uncommon that my stomach feels like this, it could be diet, it could be a few things. When I got up and went to the shower I felt my stomach and it was pretty hard. I had a shower, I sat in there for ages, eyes shut water streaming down my back. It was so calming, I feel much less gross than I did before. Im a lot more with it, Im still tired just not as overcome by it. My stomach is still feeling a bit off, but I feel better than I did. I feel like I am dying to go to the loo but there isnt anything to do. Im off to get my dressing changed, I kinda hope this is it that they actually decide not to keep having me come back.
Im on hold with medicare, once I have done this Im going to lay down for a bit. I feel really uncomfortable today and I am incredibly tired. I got an email from one of my support people asking for an update so I went through what has been happening, and that took quite a while to write. Im starting to find it pretty hard to keep my eyes open, so I really hope that Im not on hold for too long. When I was getting my dressing done today, I had to wait quite a long time for a GP to come in and I kept dozing off while I was waiting. Im having a bit of trouble with the whole connected to reality thing today, but I wonder if this is a product of me being being so tired.
I finally got through to Medicare after days of trying, they have the claim and everything but actually processing the claim can take up to 2 months. Which is ridiculous, I outlay so much money in that period of time and then I have to wait for them so I have money again.
I went to bed for a bit, I fell straight asleep. Dad, obviously not knowing where I was and wanting to know, opened the door to my room, he wasnt gentle about it, then he said something and closed the door. That was enough, I was awake, but I also thought it was tomorrow morning and I had slept through my appointment with the psychiatrist, which freaked me out and I was well and truely awake so I got up. I, again, had to go to the loo for the I dont know how many times today. The longer Im on the antibiotics, the worse the diarrhoea is getting. At the same time, the better my appitite is becoming, which is only serving to make the diarrhoea worse.
I went and saw Mum and she asked me if I brushed my teeth and I said no, my sister bought me a good electric toothbrush and Im figuring me not using it has come up as an issue. My sister spent good money on it. I have real issues when Im depressed with self care, Im doing well with showering, but brushing my teeth is something that I get really stuck on. I dont know exactly why, but I just cant make myself do it. Mum was not at all understanding, it was essentially, just do it, she didnt care that I had depression and this is part of the manifestation for me. It seemed more about the money spent than my depression.
I have been doing my bankruptcy form, its asking for stuff that I didnt anticipate, but I can get, its just not as straight forward as Id like. My sister rang and we talked for a while. Its really hard talking to her sometimes, she seems so much like her normal self and you start talking to her like she is and out of the blue she changes. I wound up the call, I wasnt feeling great, the dizzy weird feeling was hitting really hard and still is. I got incredibly hot. My BP and temp are ok. Im going to go back and lay down again, Im incredibly tired and I really dont feel right. My stomach is really hard and sore. I feel like I have fallen off a cliff into a shit heap. I dont know what this dizzy feeling is in my head, I dont even know how to properly describe it. I cant say its dizzy, its the closest thing I have to describe it but its not exactly right.
I laid down for an hour and woke up, I really had to pee, Im not as dizzy but its definately still there. I had no trouble falling asleep, I laid in bed and was out like a light. I had thought earlier that I should go to hospital the feeling was that bad but I dont think I will, even if it comes back really bad. I might tomorrow if its an issue still but I really want to have my psychiatrist appointment, Ive been waiting long enough for it. I can only imagine how long it will take for them to see me and investigate the issue, I would imagine they would take me to the local ER and Id be transferred to the primary ER for the state. Id likely get seen reasonably quickly in the local ER, but going to the primary ER, Id be queued up for sure. Im dizzy, I dont have a leg missing. I would like, however, for the reason behind this feeling, why it happens at different times, why they are more common in the morning and night than during the day. Its not a normal feeling, I cant even describe it properly, its not a feeling Ive ever experienced before. I just got up and I was able to identify part of the feeling, its like walking through statically charged molasses, when I turn my head, its like my eyesight is slowed down by the molasses but the rest of me isnt. My head sorta gets tingly when I move it. That actually might be the closest description I have ever got to. Its not completely accurate, there is a dizzyness, a wozzyness. Its not a normal feeling, its not a feeling that I have experienced before, it doesnt seem like a natural feeling, it would indicate to me that something isnt right. It could be my medication I suppose, it could be something else, its the something else that worries me and the fact that its getting worse. Is there something going wrong with my brain? with my heart? I am waiting to see my cardiologist, we know there is issues with blood pressure, though, this doesnt seem to relate to my feeling. But the AF? Could that be an issue, could that be an indication of what the issue is? Its weird, Im concerned about whats going on, more on a logical, practicle basis than anything. I have so many issues, so many that I have and am facing, that its simply just another one to be faced. With everything Ive been dealing with it hasnt rated as something that needs to be discussed further with my GP. But, I think the way things are tonight that it might need to be or its a trip to ER, its not distressing me a huge amount yet, but its sure is getting very close.
The dogs tend to concregrate in the kitchen/dinning room area, makes sense given thats where my sister and I spend a lot of our time. I walk through and they are lying in the way its a simple, out the way mate or similar. Typically they move, I might need to be told twice but thats it. Dad, quite loudly will say get out the way, in a whiny way, like he has had enough, which he has but seriously. They are dogs, they havent been trained, but simply telling the dogs to move out the way calmly and they will. The whole house doesnt need to know that the dogs are in your way. He is also not the only one to have them in his way, around him etc. I mean right now, right next to me, under my feet, is one of the dogs. When he is an issue, he will move when I ask.
There are a couple of medications Im supposed to take before or with tea, with the way my head is feeling tonight, the idea of eating is really not appealling. Id pretty much just like to go to bed and try and sleep, with any luck the feeling would go away while Im asleep. It got better and normally does when I go to sleep but comes back, sooner or later. I have a feeling its medication related, it goes away after my morning meds and after my night meds, I never have the feeling after I have taken them, I kinda just realised that. I wonder if its my pain medication, I wonder if its wearing off before the 12 hour period is up like it said in the Painkiller show and thats the way it presents for me. Thats my initial symptom of withdrawal.
I took my night meds, which includes my pain meds and not long later the feeling has gone. Im pretty confident that its the pain meds. Im doing another piece on evil to post which is interesting me. Tomorrow is a big day, its likely going to feel really long. Im taking Mum to her doctors appointment tomorrow inbetween my appointments, Dad asked me to take her instead of him. Typically Mum wants to go shopping after her appointments, tomorrow she wont be able to or at worse its going to have to be really limited, I cant spend hours at the grocery store. I want to do more on the bankruptcy stuff tomorrow, I really want it completed by the end of the week. I thought Id have it done today. Im finishing my smoke and going to bed

In response to: Re: So over it

Re: So over it

I went to bed and I fell asleep pretty quickly but I woke up only a couple hours later. I woke up almost with a shock. I was sure it was much earlier in the morning but it was only 1am, I thought it was like 5 or 6am. I dont really know why, it makes far more sense that its only 1am, than is more normal for me than to sleep through the night like tthat. Ill go back to bed shortly, currently Im not overly tired but I do need some sleep.
My tounge is really uncomfortable this morning, its pretty sore and irritating. Its hanging on for dear life. Glositis is what its called, but it seems really open to interpretation as to the cause and appropriate treatment. There isnt really anything hard and fast about it.
You know Im obviously bothered about the whole one thing after another at the moment. If it were just like you have this, take this pill and you will be ok then that would be one thing but its never that, its always you have this and now you have this treatment protocol, now you have to see this specialist, now this, now that. So many of the issues I am facing have life long consequences, they arent short term issues that can be treated short term and resolved. I think it would be easier if there were more short term issues, that stayed just short term issues. For instance, the abcess, surgery and then a few days of wound care, that should have ended today, now Im looking at it continuing until next Tuesday. I appreciate that they are looking out for me and I have a histroy of healing slowly, so they are being cautious, Im pretty right not being so cautious. Id be ok with stopping today and seeing how things go, but as they say, I cant see the wound site so having someone check it for me is a good thing. Its supposed to be short term, its not life long but its still longer than just pop a OTC pain killer and it goes away. I need a few more issues that are pop a pill, etc. I need a few more issues that that are resolved rapidly, like a ticking of tasks as done on a to-do list. I feel like my task list is growing and nothing is getting marked as completed. I keep a pretty good record of my medical conditions, I think I need to do something better regarding tracking and managing the conditions, particularly keeping record of past conditions.
I went back to bed at around 3am, I expected to sleep a couple hours and wake, latest 6am, I slept until a bit after 7am which was a pretty decent sleep for me. I woke up and Dad was awake already, which is a fair bit unusual for him to be awake at that time. He is in a mood, he is very fed up this morning, he hasnt really let up winging about pretty much everything and anything. Im listening to him and chiming in here and there but most of it is the same stuff I have heard a million times before. The current conversation he said, oh yeah we talked about this the other day and continued to talk.
Ive got the psychiatrist in 30min, Im slowly waking up, Ive been having some disassociation this morning, which is frustrating especially with Dad talking to me. It seems to have calmed down, which is good given I have the appointment. Im really wondering how this will go, if she has read what I emailed her, if it made sense, if she had a problem me sending it to her etc. I get really worried that doing something like the email will tick people off, that they will get mad with me for doing so. One of my concerns seeing a new psychiatrists is that they wont believe me, they wont understand, they will think Im lying or putting it on and I wont be helped. Even if they do believe etc, that they wont do anything. That I will open up and talk about my experiences and they will still leave me to deal with them on my own, they wont have the medication, tools or support to provide to make my life a little bit easier.
The boil on the back of my leg is growing, quickish. Its really sore, its going from tender to sore bordering painful pretty quickly. Its on the back of my thigh where I sit and I am finding it difficult to sit now, Im perched at the edge of my chair most of the time so that the boil is over the edge. Which puts pressure on my spine so that hurts more than normal. I dont want to, but if it continues the way it is, growing, no head, sore and painful, it might need to be treated by a doctor/surgeon as well.
I had my psychiatrist appointment. I like her, more importantly I believe I can work with her. The bipolar 2 diagnosis has been thrown out, she has changed my diagnosis to schizoaffective disorder, which I know a little about but will read about more in next few days. She's increased the dose of my antidepressants and changed my antipsychotic medication which I'll start tonight. I really hope it works. A break from my mental self would be awesome.
I've taken Mum to her doctors appt which was supposed to be 11:30am. An hour later she is still waiting to just go in. I have shit to do, I really just want her to have her appointment so I can do the important stuff before I have to be back for my appointment. I'd really hoped to have enough time to have a nap as well, I dont see that happening, which sucks as I'm exceptionally tired and a bit dozy.
I took Mum home. Turns out that they didn't mark her as here so she missed her appt. We were talking on way back and I said something about NDIS and she has made phone call but waiting on call back. She started on about her other scans etc. She said something about how much better my sister was at doing all this than my Dad. I had had enough by this point, I mean it's not hard to make an appointment. Just make the damn appointments. When she said about my sister etc I said and look where she's wound up. Mum said it's not all her fault and I said yeah she had other stuff on but she contributed and that she is doing the same to Dad. Then it was something about him pulling his head out his arse and I cracked it. I said that she was asking something of him he has never done, something that he doesn't know how to do, something that isn't him. He isn't just going to magically change into someone he isn't. Basically she needs to work with him. I didnt say this but she seems to be doing her best to make it as difficult for him as possible, then using the excuse of I have a brain injury I forget, work a method that you can be reminded etc there are plenty of tools now. I think she forgets less than she gets caught up with doing nothing, she doesnt want to do it, she wants to make as much as possible other people's responsibility. At the same time she is overly critical of how people do what she wont. If you can find, organise, buy and get delivery of different things including a horse (failed at seller end) then you can make an appointment. You can't do one complex task and not be able to do a simple task. She, at some point, has to realise that Dad's life doesnt now revolve around her, nor should it. My sisters life shouldnt have, she put too much on my sister. She has to step up and help us help her, its not completely up to us to do. She needs to show some appreciation for the things Dad is doing for her, he vacuumed and mopped her room while she was with me, she didnt thank him when he went down to get her Health Care Card so he can get her script filled. So he is going to her, to get stuff to do more for her and she cant thank him for what he has already done. None of this is new and so much of what she says about him, I know she says about me. For what ever reason today, well its been building up, but its really gotten to me. He does so much, yes he goes outside and maybe it is too much, but what are you doing? She sits on her bed thinking of how horrible my Dad is, like some of what she says and thinks about him is really out there. Stuff like, he would deliberately make sure we are in a financially bad way to screw her retirement. But she takes no accountability for what she spends, what she gives to my sister, what she demands he gives her (my sister) and the list goes on. She takes no responcibility for her part in financal mistakes, poor investments etc. Its 100% totally Dads fault. She doesnt participate in the family in any meaningful way, my sister came home from hospital for a few hours before going back and my Mum couldnt find it in herself to come down and see her, she waiting for my sister to come to her. She doesnt come down for meals, to spend time with us, anything. It is expected that we go to her, Dad takes her tea down, after cooking it often enough. Dad does her washing, recently there was an issue that he hadnt swapped her bath mat over for months, which he said he had, the mats were the same color. But instead of being polite and nice about it, she had a go at him. There is the other option that she could have swapped it herself, but thats something Dad is supposed to do for her so why should she do it. Seriously, shes been told to eat well and excersise, she does neither. But she takes it one step further and doesnt do anything and then blames others for her weight, that stuff isnt done the way she wants it, etc. Now she wants a gastric sleeve revision, how about you stop eating shit and at least get up and get around the house. You can go to the grocery store and wander around that for a couple hours, you can walk down the hallway and sit at the dining room table.
Mum says shit about me as well, less now days but still she talks shit about shit she doesnt comprehend, more so care about, particularly if she is talking to my sister about something to do with me and my sister doesnt like/agree with something Im doing/not doing. The sheer number and severity of issues that I have been diagnosed with recently, on top of what Im already diagnosed with is pretty staggering but all too often that doesnt matter if its getting in the way of something Mum or my sister want from me. Again, they have been better, but my sister is still calling me about things like setting up appointments with her team for the rest of the family to talk to them prior to her coming home. Im not doing it, Im not involved this time, I cant deal with it. I tell Dad and he makes a fuss and all I am left with is the belief that he is trying to make it easier for me to do it myself. He said my sister will need to be involved etc, and I said yeah, so call her and talk to her. Just this last week Ive been told I have several fractured vertebra causing a 40 degree kink in my spine, spinal arthritis in a number of places in my spine, arthritis in my left hand/wrist and my knees, type 2 diabeties and my bipolar 2 diagnosis was changed to schizoaffective disorder, I had urgent surgery and I had a car accident, not a typical week but I have a range of existing issues on top of all this, so its not like I was travelling well to begin with. I would think that maybe Im dealing with enough, that my mind has enough on it at the moment, that I shouldnt need to be dealing with things for Mum and my sister. Dad cant do it all, so while it might not be terribly fair, you might just have to deal with some of your shit yourself on this occassion.
Im incredibly tired, Im finding it hard not to fall asleep. My sleep last night was pretty average, of course Mums was worse. I sleep poorly normally but the last few nights Ive really had a hard time and its starting to get on top of me. Id be in bed at the moment trying to get some sleep but Im on the phone to my health insurance mob, which I have been waiting nearly an hour for them to take my call and then I have the nurses component of the complex disease management plan to go to. I would like to get some more done on my bankruptcy but that will have to wait until tomorrow. My wound is pretty sore today, I dont know if its the sore or the dressing but its not a great feeling and its much worse when I try and walk. I dont understand what my family doesnt understand when I say I am worn out, I have no energy, etc. There is the aspect of me not sleeping, but the number of medical issues, the tests, appointments and procedures related to them and simply how they affect me has a massive affect on my energy, how tired I am etc. dealing with it all, dealing with the practicle medical side and the impact of the issues is really wearing me down, I just dont have anything to give, I have depleated reserves and then some. Accomodating the impacts of the issues is not easy, especially when they keep being added to. I have to change almost constantly, I will have to change a heap with the diabeties and so on. It doesnt stop, I just want to be me again. I had another appointment, just starting to set up my care plan. We spoke about the need that I have to change my diet, she said that my biggest hassle is that I cant excercise, I can hardly walk, so no matter what I eat Im going to have difficulty. I said that basically, I didnt see a point, no matter what I do Im going to struggle with my weight, so I might as well enjoy it. I know that it isnt the right attitude, but Ive struggle most my life with my weight and I got to a point where I didnt see the point fighting it, I might as well enjoy myself for a few minutes. With the diabeties diagnosis, I have to care more than I have been, I have to change, I have to change who I am to survive this.
I have been feeling like my underwear is a couple sizes too small towards the end of the day for the past few day to a week. Actually, it wasnt my underware, I just felt like my stomach and below was huge, I was seriously uncomfortable, my stomach has been hard and it has been normal and it has felt the same, uncomfortable, sore and painful. I got home from my final appointment today and immediately removed my jocks and it feels so much better, so firstly I know I am bigger than I was, these are commonly worn jocks, they fit ok this morning, so at some point I have grown, significantly and rapidly. I also know its not in my head. I am going to bring it up with my GP tomorrow, its not a fantastic thing to be experiencing, so Im not in a panic to get it dealt with, but Id really like it sorted soon. Im going to talk abot the new boils as well. I dont know if she will be able to do anything tomorrow, Ive requested it but the session is for a care plan, not looking into new issues. These are kinda minor I suppose but FFS can it just stop, can I deal with the issues in front of me, just the ones I have, get them sorted, get them resolved or managed and then we can look at adding something new. Im hoping that the abcesses coming up wont need surgery as well, I mean Ive been pounded with antibiotics pretty heavily and they have still been coming up, though less of them than before. It concerns me that despite the antibiotics, that I am still getting them. Its reallly odd too that I am getting them like the one I had to get drained, where there was no head on it for ages. I have one under my arm that is really bugging me and I have taken to it with a needle a few times, liquid came out more like water than puss, so I have no idea what the go is there.
Im not far off getting ready for bed. Ive had bugger all sleep for like ever, the last week has been something else, its been one thing after another after something else, all baking on top of a shit pile of crap and its all become too much, I feel incredibly overwhelmed by it all and incredibly exhusted. So, as soon as I can put my meds into my cake hole, Im going to and Im going to bed. Im really hopeful that I actually get some sleep tonight, really get some sleep.
I took my Mum to the doctors, did my jobs and came home, Dad came in and told me that Mum was asleep when he last went down there. I have no issue with Mum having a nap, I am sick of hearing how she got no sleep last night because she went to bed at 5 or 6 am and then she sleeps most the day. She isnt having sleep deprevation, major sleep issues, etc. She prefers to sleep during the day, she always has and she has once again she has flipped her sleeping pattern around. The annoying thing with that is she isnt attending to her medical etc. needs, she will go to appointments made for her but wont be proactive about making them, because shes tired because she has been up all night. I say to her that I had a bad nights sleep last night or I am having serious sleep issues and deprevation and she tries to relate and she has no idea, she doesnt have shit to do during the day, she doesnt have to be up and about, I might get time for a nap, like 2 hours, but not a solid sleep like her. Even if I dont have anything on, Im still not able to sleep all day, Im still only going to get a nap, Im still having the same issues sleeping during the day as at night. So, I get a fair bit ticked off with Mum talking about her sleep problems when really they are nothing, she is sleeping, she is ok, its myself and my sister that arent and have issues.

In response to: Re: So over it

Re: So over it

I went too bed at 9:30pm and I was asleep so fast, I dont think my head hit the pillow before I was out. I didnt wake up again until 1pm and I felt really revived, like I had slept for hours upon hours. After an hour I feel less that way, Im tired again and thinking that bed is calling my name.
I had a boil, well a few but one in particular that was really painful, it was getting quite huge. I couldnt feel a head, depending on my position the height of the boil changed. I had squeezed it a little but last night I got the shits up and really went at it. I dont think it was really ready to pop but I did make it pop, the relief was immediate. I have another one under my arm, its really irritating. No matter what I did I couldnt get it to pop, I ended up getting overly frustrated and I started trying to jam a needle into it. I did manage to get it into the boil, once, but it was just liquid, not puss etc. Since then its grown and I cant get it to pop again.
I have a tooth that we are part way through doing a root canal, its been a month atleast since the first part was done, its another few weeks until I see them again. Its starting to hurt a bit which is frustrating. If it continues to get worse, Im going to have to go in for an urgent appointment.
Its nearly 4:30am, Im still up but Im going to go to bed in a moment. For the last couple hours I have been sitting and dozing, I know a couple of times I have nearly fallen off my chair. I am feeling quite a bit more awake now. Between my tooth, boils and wound Im feeling pretty frustrated, which is odd, given the number of other medical conditions I have that I would pick out those 3 to be frustrated by. I mean they are so minor in comparisson to the other shit I am facing, but they are annoying the crap out of me.
I rang my dentist rooms and asked when I could get into have my tooth looked at, kinda urgently. Its Friday and the receptionist was indicating Tuesday would be the earliest due to Monday being a public holiday. She did give me an appointment time but it conflicted with seeing my GP so she is going to see what she can do and call me back. Id really like it to be today, its not end of the earth painful but with everything else.
Im really tired, I sat until 6am dozing this morning, I went to bed and fell pretty much straight to sleep, I woke up just before my alarm went off at 9am. Ive rung the dentist, as above. Ive taken my meds and once the dentist has called me back Ill have a shower. I kinda want to have one to wake me, just get me going. The dentist has called back, they have got me in at 11. Dad has got home, in a foul mood, my sister has decided that she wants more stuff so he was trying to empty the trailer at the steel dump, he had to stop that and come home. Honestly, it probably worked out well for me as he was nearly home when I rang to see if he would be home before I would need to leave.
I don't understand why he is all the sudden so keen on doing stuff that needs the trailer, like taking steel to the steel dump. Im not medically doing great, Im having a pretty terrible run at the moment. Mum is Mum and my sister is in hospital. So you would think unless he's using it at the time he would have it off. Especially since I'm not exactly healty, neither is Mum and my sister is in hospital.
I'm waiting for the dentist at the moment, I keep dozing off and I cant stop myself. It's hard to stay awake. I nod off constantly. Sleep is desperately needed. My appointment was for 11am Im still waiting 30min later. My dentist finally came and saw me, turns out my nerve is infected, which makes sense cause my mouth really hurts. He wacked in some antibiotics and packed the hole until I see him on the 12th. I had said something to the receptionist about not being available after 2 as I had multiple appointments, we kinda unpacked this a little, but not a huge amount. My dentist was told about what I said and we talked a little more after he had finished, I didnt think much of it, I didnt go into great detail but he did waive the gap which was really nice of him, massively helpful
I got home, Dad continues to be in a mood, I seriously just dont care. While driving home my sister rang, but I couldnt take the call. I rang her back to find out what she wanted, she was on about this meeting for the family with her doctor. Pretty much everyday for past few days she has contacted me about it. Ive tried to gently encourage her to speak to Dad about it. Today I was more direct and told her I was leaving it to Dad as I have enough on my plate, which I think is fair enough. I also found out she has been speaking to everyone about it, me Dad an my Mum, just leave it with one person. But as I have said and asked multiple times, Im here if you need to talk but other than that leave me out of it. When I said that I had enough on my plate my sister said that she didnt care, if we wanted to talk to the doctor we need to do something. Im pretty hurt, again everything I did and have had to deal with since and during her issues. This time I dont have it in me to do much for her, its not that I dont care, its that I am inundated with my own medical issues to contend with. She has her mental health, along with some general medical issues. Most are serious but she is dealing with her specialists pretty much on her own. I have mental health stuff too, pretty severe stuff that I am only just starting to address, general medical issues, I have a lot, far too many. Just the events of the past week are enough, not to mention my sleep is getting worse and it was horrible to begin with. The difficulty Im having staying awake while writing this is pretty full on. My health issues general and mental are pretty full on and dont back down. This doesnt mention pain, I live in severe chronic spinal pain, not to mention essentially my whole body aches everyday, no matter how kind etc. I am to it. Then there is my shoulder at the moment, it has a mind of its own regarding when its going to be in pain and how much pain, it randomly hurt a lot over night but its ok today. Im not saying that I cant help and then sitting on my arse doing nothing. I cant because Im having to deal with all these issues and a shit load of new ones. They are impacting me less emotionally now, I mean there is still an effect on my mental health, which is suffering really badly now, but its not like I am on any level distrught about the new diagnosis. It becomes a practical matter, what steps do I have to take from here? Its become to confronting? to address new diagnosis head on with an emotional component. When I first got the diagnosis of type 2 diabeties there was an inital step back, but its been a matter of fact thing since then, what do I need to know, what do I need to do.
Ive been waiting for my health insurer to answer their line for the past 1.5 hours. I know they have delays due to a new system or something but this is ridiculous. It should never take this long to answer an inbound phone call and this isnt my first attempt. I just want to sort out my account as I got told that im not currently financial with them when I was in hospital over the weekend. I got through and all sorted just before I had to leave for appointments.
They are leaving the wound unbandaged now but I still have to go see them. My GP recons that the bacteria on my skin is more aggressive than most, hence the boils, even after the antibiotics, next time I see her we going to do a referral to a dermatologist. The bloating, she recons all the IV antibiotics when I was in hospital and the follow up at home has done a number on my guts, she has recommended probiotics to help sort shit out.
I spoke to Mum tonight, I went to tell her about the results from today's appointments, she said something, I dont remember what, a dig about Dad, something about dusting. I kinda got really shitty and I kinda unleashed. It wasnt an attack at her, it was stuff I have said to my Dad as well. Id make an example and Mum would latch onto it, I had to keep saying stuff like bigger picture. I was talking about Mum and Dad's inability to talk, they both come in with what they want, their demands and are unwilling to budge. The number of examples she gave of her doing exactly that was stupid. After talking with her quite directly, I cant see how my Mum and Dad can ever actually talk. She is to set thinking she is right, Dad isnt much better, there is a he/she does, Ill do mentality and a, who do they think they are to say no to me, Im going to do it anyhow. I said to Mum that both my sister and I agree that if my sister and I acted like Mum and Dad are, Mum would bang our heads together. It should be that Mum and Dad would have a decision to make and they would talk and come to a conclusion as to best outcome and go forward. Thats the other thing, which I didnt say to Mum, but if a decision is made then Dad has to do it. Mum continously says that Dad isnt doing enough, is outside too much, doesnt do it right, half a job, etc, but she is sitting on the edge of her bed not participating at all.
Im finding the attitude that Mum and Dad have for one another just so ridiculous and childish. I get that there is history, Mum does a really good job of recounting it, as she recollects it, over and over again. I understand that its the same for Dad. Both seem to think they are completely blameless in the whole thing, in the events of the marriage. Dad didnt make decisions as quickly as Mum wanted or at all, so Mum feels completely justified in taking over and making them instead, which is one thing, but its the commanding others as to what to do in relation to that decision or any that she makes, anything she decides, because she took it one step further and started making decisions without any engagement, it was just her deciding and the rest of us doing. On the flip side, Dad just let it go, he just let Mum start making the calls and telling people what to do, he actually did as instructed, he didnt stop her, he gave in straight away. The other thing that really bugs me and I really struggle with is Mum says one thing and Dad says another, their history doesnt marry up, they are quite different. I cant think one is lying and the other isnt, I cant say to one you're a liar and believe the other, without any evidence either way, there isnt any, its all he said, she said. So, they are both full of shit and likely hood is that they are, neither are remembering what happened correctly or in full. Both look at the other as being worse than they probably were and that they were not as at fault as they might have been. But for my view of it, they are both full of shit, neither will talk to each other, neither is willing to be the bigger person and make a step forward, neither will admit or even consider that their recollection of things might not be completely correct. So while thats the case, I have to think that they are both full of it. I have tried to ignore it, to avoid the topics, but the more I talk to my Mum and my Dad, the more I am hearing them trash each other, tell opposing stories and continually put me and my sister in the middle the harder it is for me to take all of this. Its a huge factor as to why Im struggling, why Im having difficulty with my mind racing etc. I know my sister struggles with this as well. If things dont change soon, its going to be the diving board that launches me into another hospital admission. If my sister comes home and it continues, she wont cope. Mums response was to a)run away b)she is on the edge and going to be in a bed next to my sister. I know its not fair, I know its not how it works and everything else but I dont understand what Mums issue is, shes not well etc, she doesnt leave her room, she doesnt participate in the family, unless we go to her, she was on about watching my sister and I and how we change etc. I didnt question it but how, you dont leave your room, you can only go by info given to you from the rest of us, both Dad and my sister are known to manipulate, I dont think I do, at least I dont try too. She doesnt have to do anything she doesnt want to and she doesnt, hell as I found out today, her NDIS is only going to cover cleaning her room, it could easily help Dad as well and clean the house but no Mum limited it to just her room. She has chosen to completely withdraw from the family and life, unless its on her terms completely and now she is crying that she is near needing hospitalisation. However, she wont do anything about a psychologist, let alone a psychiatrist. She says she will get a psychologist via NDIS, which she might, but there is no reason she cant see one like everyone else and pay the gap for it and start getting help while she waits for NDIS but she wont. She flatly refuses to see a psychiatrist. I cant even get her to make appointments for medical tests, I remind her, she gets mad, I get frustrated. She says she forgets, I said write a note, she says she does. There are people with major memory loss that can work their shit out. I asked her what I can do and she doesnt know. I said to her that I think its either the money or she doesnt care about herself, if she doesnt care about herself, stop taking it out on the rest of us. We all have faults and shortcomings, if you point out any in Mum, for what ever reason, then there is an issue.
I have a really upset stomach, I didnt eat much of tea, it was ok I just couldnt get much down again, Im back to my old ways of eating very little. Im sore, pretty well all over, but my back and shoulder arent good. Im bloated and swollen again. A few hours later that has calmed down which is nice. Its now 11pm and Im really really tired but pretty alert.

In response to: Re: So over it

Re: So over it

I woke at 1:30am, what a suprise. I feel a bit (a lot) off. I mucked about, I decided to go back to bed but got caught up with something and stayed up and felt better, more alert. I felt like I was almost asleep, not quite awake, I couldnt work stuff out properly, it was like I dunno something was not there mentally. But then, almost instantly, I was ok. Im going to go to bed in a minute, less because Im tired but more because I should and Im not up because my mind is racing or anything Im just up, I actually feel pretty awake and alert. This could all be my new medication, the new antipsychotic, which might not be so bad if it were that I take at night only, but its a twice a day medication, so it will be really interesting how I go during the day on the stuff. Hopefully, it is a matter of waiting for the worst of the side affects to wear off, like the drowsyness and mental oddities, its hard to tell off the first dose. Im quite over my tounge issues, its not overly painful, it can be but its more uncomfortable, a bit more than that, its sore. It can be fine for sometime and then its not, I get some relief from Savacol and anaesthetic lozengers, I use the Savacol at night primarily when its at its worse, it helps me sleep. It reduces the random pains I get, it reduces the discomfort when I swollow, atleast for a while. When I see my GP in the near furture I am going to talk to her about it further.
I keep a list of issues to be brought up with my GP, each appointment I select the most important or pressing items to be discussed in that appointment. Ive started to do the same for my psychiatrist and psychologist regarding issues and topics I want to discuss. Its helpful given my memory is pretty crap and even more so when it comes to psych related things. The GP list is helpful because Im not dealing with one issue, Im not needing a small number of regular medications, its a large list of issues to keep on top of, which is where the care plan helps. Medication wise, most is dealt with without my involvement, but having it noted helps me make sure I get what I need. When it comes to psych things I tend forget things once they have stopped, even if they are repeated, Ill remember at the time it happens again that its happened before but often I will forget experiences. Its not that I forget exactly its that its pushed to the side, I chose not to remember it, I force myself not to focus on them, they arent neccessarily disturbing in themselves, the fact that I am having them is though. I shouldnt be having these experiences at all, thats the disturbing bit. So, keeping a record of the experiences I have, particularly the ones I want to discuss or I think should be brought to their attention means that I discuss what needs to be discussed and with what needs to be brought to their attention, there is closure.
I went to bed around 4am and woke up again around 8am, a reasonably decent stretch of sleep. I woke up and my tounge is really sore, really really sore, my shoulders, both of them are incredibly sore, my left is far worse, Im not sure whats caused it. My stomach is feeling pretty horrible, Ive managed the loo this morning, first time in a few days. I went from diarrhoea to constipation overnight, my GP said about fecal loading yesterday. Ive never had so much issue regarding going to the loo since I started the pain medication Im on now. It is a continual battle, trying to maintain a regularity. Then there is just peeing, I cant seem to get that sorted either, I cant start, I cant stop. Im seemingly doing better with that at the moment, since I stopped one of the medications Im on, interestingly the one that was supposed to help me actually come to a complete stop. I have a couple of abcesses that are in annoying spots, Im pretty sick of freaking abcesses at this point. Im not sure what it is, but something has caused them to get worse really suddenly.
I spoke to Dad last night and briefly this morning, also I spoke to my sister this morning. My sister wants me to come down and pick her up and bring her home for a while today. As Im starting the new antipsychotic Im not 100% keen/confident on doing it, so Ive asked for a few hours to see how I go with the new med as I take it morning and night, last thing I need is to drive down, get messed up on way there or bad and have an accident. I dont think my sister was terribly happy that I didnt just jump at the idea of driving down. Its something that irritates me at the moment about her, if it doesnt go her way, for what ever reason, she seems to think that its something against her, like I dont want her to come home or I dont want to spend time with her, etc. Its not the reason but she cant accept that its simply that Im concerned about the new medication, which I think I have reasonable justification to be. I said to Dad last night about the need for Mum and him to talk. This way of relating to one another that they are doing is simply not working, it hasnt in the past and it doesnt now. They have never, as far as I remember, had great communication skills. It has always been, as far as Ive seen, Mum says and Dad must obey. However, Mum says that Dad often comes to her and tells her this and that, he has goes at her etc. But then he says no to another horse and she goes about organising one behind his back, its ok, she is going to pay for it. How dare he say what she can and cant do. So, what I witness is one thing, what Mum says happens is another and then what Mum does. It doesnt add up. The amazing thing is that Mum says Dad cant tell her what to do, that if she wants a horse she can have one. Which, I suppose is true, to an extent, I mean that is a very simplistic view. On the other hand, it the day to day she is constantly telling Dad what to do. But with the horse, she wont be able to do many things required to look after a horse. She cant even come down to the kitchen on a regular basis or even to get her own milk, toilet paper etc. How on earth does she look after a horse, no the expectation is Dad will pick up where she doesnt and where Dad says he wont do that, then there is an issue, why not, why cant you support me in this?All the things Dads already doing to support her isnt enough, now she wants him to be responcible for her horse. Why can she tell him what to do but the opposite.
At this point, it would appear that the new medications started to affect me, Im really tired all the sudden. Im going to bed for a bit.
I woke up 3 hours later, I completely flaked out. I feel pretty woozy, just a bit unsteady. Im tired, but not. I hope this all passes quickly, I hope that I grow accustom to the side affects of the medication.
What I did say to both Mum and Dad is that their inability to communicate, their communicating via both my sister and I, this war that they have going on, is not just affecting them. That it is part of the reason my sister is in hospital and part of the reason I am heading that way. Of course Mum said that it was causing her to be on the edge and she is going to end up in hospital. The attitude that they have towards one another is bullshit, the tension is unbelievable, Dad couldnt understand why I felt the tension, what I meant. But you are always waiting for something to happen, for something to be said and next thing everything blows up. It doesnt even need to be something mean or meant to be hurtful, it is interpreted as having a hidden meaning or something. It amazes me how skepticle of other peoples motives people are, you cant just say what you mean, there is always a something behind what you are saying and you are never saying exactly what you mean. Which sometimes is true because if you say what you mean, if you're honest about how your feel and you're thoughts you're more often than not, cut down. The carry on, the political movements required within the family, the recounting of what is felt that someone said rather than what was said, I find is incredibly hard. Im, generally speaking, a person who says what he means, more so now I try to temper that and put it nicely, kindly, Im not always successful but I do try. Sometimes, I deliberately dont, sometimes its important to be direct, sometimes by tempering myself my message is lost or misconstrued.
Dad went and picked up my sister, I woke up and she was in town. I had really only expected that I would sleep an hour, maybe a little more, not 3 hours, so I was a little disappointed that she wasnt home when I got up. I might not be able to get down to see her in hospital etc but I still look forward to seeing her and I still care for her. She came home, Mum came down and Dad stopped for a while and we all sat around the dinning room table and it was actually pleasant.
Both my sister and I drink a fair bit of fluids, one being iced coffee, we recycle our bottles. I finish drinks and take the lid off and chuck that in my bag that I use as a bin. I put the bottles on the counter next to me and randomly move them to the recycling bins to be put out before they are taken in by Dad. Anyhow, when Mum came down she noticed a couple of 2ltr iced coffee bottles and asked why I was drinking that shit? Before I replied, launched into her, my sister cut in and changed the conversation direction. Which was good, because I was going to be nice about it but I was going to be straight. For the most part, iced coffee is my weakness, I dont eat chips, I dont usually eat munchies, I do occassionally, I dont really eat out, I have donuts somewhat regularly, but for the most part iced coffee is it and the amount varies but I would think 2ltrs a day is the average, too much, its a good part of why I am the weight I am. Not the only reason though. Anyhow, Mum will eat shit almost exclusively, chows down on Zooper Doopers all day, like lots a pack a day. Heaps of cheese sticks. Then most nights seafood salad, which is just crap mixed with seafood offcuts. She has put on quite a heap of weight, she might not be my size but she is on her way and her answer it to get Dad to spend a crap load more money on a sleeve revision, yet another surgery and the initial sleeve isnt her first weight loss surgery. So, from my point of view she doesnt have a leg to stand on, she can mean well, she can what ever but while she is struggling herself, she cant be judgemental about my struggle, she cant condemn me for drinking iced coffee, she cant carry on about how my weight impacts my health and I should just change my habits as a result, especially given she wont do the same. FFS she is in heart failure and yes she has reduced how much she smokes, but she still smokes. She is only supposed to have 1.2ltrs of fluid a day, which just in Zooper Doopers she goes over, not to mention her cups of tea. So when you are sticking to you're medically prescribed limits and you're diet is all but flawless and you have completely changed your relationship with what you put down your mouth, then, then you can kindly ask if I want your help to improve my relationship, I still wouldnt accept your judgement though.
Ive blown up like a balloon again, I feel ginormus, my shirt only just gets over my gut, again I sans undies but I still feel so uncomfortable. I feel like I have put on 30kg from just above my knees to just below my neck. I feel quite on the aweful side, I feel so hot, its been hot all day, its night now and all the sudden Im hot. I have finished my course of antibiotics and even before it had I was getting new boils, today I have a number of new ones. I have the one under my arm and one on the top of my leg, both Ive had for a while now. I now have one on my my side, under my arm, almost directly below the other one under my arm. Then there is a couple on my pubis rise. Lastly one on the crease between my butt and leg. All of which are really annoying and incredibly frustrating. Because Im expanding they hurt more, they must stretch and that causes me to feel them more. Its a continual fight, me and boils. I cant seem to bring them to heel, hopefully the dermatologist can do something.
Im feeling pretty uncomfortable all round tonight, my back is pretty sore, my knees and legs ache pretty bad, as do my arms and hands. I have fair sized headache, coming from my neck, its pressure one. Out of curiosity I looked at the weather and its dropping 10degrees between tonight and tomorrow, then it goes back up and then it drops a huge amount and is raining. Since the procedures on my spine Ive found that rather than leading up to weather changes my back reacts to the actual change. I wonder if the rest of me is having the same thing, I mean there is arthritis all over the shop, amoungst other issues. My tounge pain is back, the numbing shit must be wearing off, so in a moment Ill do some more, its annoying as crap, I wish, like so many other things it could just be resolved not managed.
I didnt get anything, anywhere near what I wanted to get done, done today. I really wanted to get something done with the bankruptcy form today, but the new med knocking me out 1/2 way through the day put a damper on things. Im going to do some stuff with my diary, entering in doctors appointments, seeing if I can improve on what I have, I have a number of standard appointments that I want to be long appointments. I am forever going overtime, as you can imagine, there is a lot of shit to get through. I try to keep appointments to once a week, occassionally its two but I try to minimise that. I mean my GP probably wouldnt have an issue, we would get shit sorted a bit quicker but I feel it would be a bit like I was dominating her time.
I just got up to go to the bathroom and I wasnt feeling 100% sitting down but didnt think much of it, when do I really feel 100% right, but I got up and I started walking and it was a really odd feeling, Im not sure I can put my finger on it. Its almost like things were slowing down, but it wasnt as if I was witnessing thing in more detail or more carefully. It was kinda like when I have the derealisation but without the disconnection, it was very much something didnt feel right. I am getting close to my next dose of medication so that might have something to do with it. Im sorta floating between being tired and ready for bed and pretty awake. I think that how uncomfortable I am is making me lean towards going to bed soon more than anything. There really isnt much of me that isnt in pain, sore or uncomfortable, hell even my tounge is sore, even for me thats strange. If Im asleep, for the most part I am no longer aware of any of that unless of course I wake up.
I went down and had a shower before, I had asked Mum to help with some Magnoplasm and my boils but by the time I got out the shower she was asleep, again. She had to be woken in the morning for her medication and now we had to wake her for her tablets at night, she goes on about leaving home and living on her own, having a horse, this and that but seriously she cant even manage to make sure she is awake to take her medication and I just dont see that as being a hard thing. She says she doesnt wake up to an alarm, but I bet she does, she just wakes up, turns it off and goes back to sleep because she doesnt want to get up, she would rather sleep than do much else and thats fine, but dont blame the rest of us for not having your medication.
I just got up to get my night meds and I realised why my legs are so sore, I havent had my diuretics this morning, I ran out and I wasnt able to get to the chemist this morning, Ive been in a couple times in last couple days but keep forgetting them, so it my own damn fault. I might have to steal a couple from Mum tomorrow and Monday until the chemist is open again. I literally walked to my room, got my meds out of my safe and walked back and my back hurts bad, really bad. I didnt take any extra pain meds, Im going to try to sleep without them. Mum forgot to get a script for hers, so Im doing my best not to need mine so I can let her have some of mine. Mum and I cross over on some of our meds, normally we are reasonably good at making sure we have sufficent, it just so happens we have both screwed up and we can save each others bacon on a long weekend.
Im struggling with keeping cool, its not hot, I know its not hot but I keep getting really warm. I just checked my tempreture and its up a bit, not a massive amount but its up. My BP is up but in acceptable range, probably the higher range but ok. I do have to keep an eye on it because I tend to get high blood pressure and it does tend to get really high and I have to make sure its not so high I need to go to hospital.
Dad has been asleep in the lounge, he was supposed to be watching TV but apparently doing a shit job of that. He came into the kitchen and mumbled about some crap, trying to work outifhehad slept in there through the night, which I assured him he didnt. He was standing in the kitchen and said that its freezing in here. I told him I was hot, as I am and that I had a tempreture. He then proceded to call me a variety of versions of weird. Given that I have an open wound on my groin from surgery(hence keeping an eye on my temp) you would think that he may consider me having a tempreture, even a slight one, as something to be concerned about. No Im weird. I just checked my tempreture again and its gone up some more, so Im not exactly tired at the moment so I will keep an eye on it and I will check it when I wake up during the night as Im sure I will, if it gets too high Ill have to do something about it. I really hope that it settles on its own, I dont want to go back to hospital, Ive had enough of any ER, any hospital, every doctors clinic, all of it. I do however know that it is deep in my groin, where its hard to keep clean etc.
Im not sure whats going on, its 1am I did have a nap this morning/afternoon, so that might be it but I really thought I should be asleep by now, atleast pretty tired but Im not. Normally, Id have gone to bed and woken up around now but not tonight. I suppose it could be this new antipsychotic, which would be pretty annoying. I have a shit sleep cycle to begin with and now its being turned upside down yet again.
Ive been redoing my medical information document for my phone, its more elaborate than before, in that I have my allergies and other important info that I didnt have before. A few interesting things did come up, one is that I have mild spinal stenosis, it is where pressure is put on the spinal cord and the nerves within it, which kinda helps me make a bit more sense of things that have been going on. I mean I knew what was happening, I was experiencing it but I didnt understand why.
I bite my nails, not like most people do, I chew down until almost nothing is left. Im not exaggerating by that either a few of my fingers currently have about 3mm of finger nail left. For some reason its been worse than normal lately, typically I dont I dont let it get that far out of control but here we are. It only really stopped because its my lower front left tooth part way through a root canal and things went pear shaped with that. Now they have temporarily fixed things but that tooth, along with the gap between the two front teeth where my tooth had broken have been filled in and the filling has been rounded smooth, making biting my nails really hard. Even before I broke my tooth, there was a gap which made biting my nails quite easy, thats gone too, there is almost no gap at all. Wiith any luck I suppose that will be the end of my nail biting, who knows.
I dont know what it is exactly that has sparked my keenness to deal with my acne, Im also reasonably tempted to deal with all my skin tags but probably not. Ive had acne and boils as long as I remember, I have tried a dermatologist before but I had a thing about taking meds at the time, now days who cares about more meds. I think Im sick of the boils and the pain from them, Im in enough pain, I dont need something else, even if its minor, to add to the pain Im already in. But also, I am sick of feeling gross, a giant puss ball just wandering around the place. So hopefully they and eliminate both boils and acne and solve both reasons why Im trying to do something about them.
Finally, Im getting tired. Its 1:30am, though daylight savings ends (or starts I never know) tonight so its 2:30am new time.
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