Connect with people who understand what you are going through, seek advice and surround yourself with support. We're free, anonymous, and professionally moderated 24/7.

47,612Members
1,358,869Posts
1,400,000Visitors

Malens Babble

ClockFaceSenior Contributor28 Mar 2023, 7:22 am AEDT

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.

562 replies

421 - 430 of 562

1...42 43 44...57

In response to: Malens Babble

ClockFaceSenior Contributor25 Aug 2023, 9:25 pm AEST

Re: It continues

I had a hard time going to bed last night, as much as I wanted to, the pain I was in, the type of pain, prevented me from even laying down. It didnt help that my mind was doing a number on me. I eventually went to bed at 3:30am but woke 2 hours later due to pain. Im still in a lot of pain, but Im going to go back to bed in a minute and see if I can get some sleep. I got another couple hours sleep and woke up. I feel completely trashed, Im in a heap of pain and Im ready for more time in bed shortly. I went to bed but woke up feeling sick, like I was going to throw up. I laid down some more but didnt really sleep so I have given up. I rang about my psychiatry stuff and still they cant proceed, they are waiting on the psychiatrist. Im getting very close to trying with another psychiatrist but it means another 4-6 week wait just to have the referral assessed. Im getting pretty angry with the whole process. I mean if she doesnt want to take me on, say so, stop carrying on about it.

Im in a lot of pain, my left shoulder is really bad, it seems to be getting worse rapidly. Im finding sleeping incredibly difficult, I move, roll over, etc I wake in pain. Im trying to sleep on my right side, Im using my right side more and more and that is aggrivating that side so it matters less and less which side is being used Im in pain. This isnt to mention the intense pain in my back that is constantly there driving mental. Add to this my mental state, Im hallucinating a bit, I had the experience that there was hundreds of versions of me and I was trying to make sense of all of them, I disassociate, etc. but its not just that I am finding that I have a lot of anxiety, if I havent had my night meds I have really no chance of sleeping now, I just lay there worrying about whats going on and my future, particularly in regards to my back pain, you know am I going to be unable to live a relatively normal life ever again, am I going to be on very strong pain relief for the rest of my life, etc. I dont particularly like the pain meds Im on, it carries significant risks and it flattens me out emotionally. The thoughts around not being able to move out and being stuck at home, being trapt with all this carry on here. Between my pain, health issues, mental health issues and home life there is a lot of anxiety, I have effectively lost my life and I dont see a way of getting even a resemblance of it back.

My sister is having a hard time, particularly at the moment but has had a rough time for quite a while now with her mental health. From my perspective, she is less willing or capable of reigning in her feelings, in not taking them out on the family etc. she seems to believe that she is well within her right to demand that things go and be done her way, that no one even slightly talks poorly to her, even when she has pushed them to that. She seems to think that being rude, having an attitude and treating people poorly is ok for her but if the same or similar is done to her she has an issue and goes running to Mum. Id like to say thats because she is having a hard time, it might be worse because she is but regardless of her mental situation she acts this way. She expects that the family will be understanding given her situation that if she snaps its because she is struggling etc. but the same consideration isnt given to the rest of us, Im becoming less tolerant of some of the stuff she does, things like questioning my answers, if I say I dont know, then thats it. Stop asking me what Im doing and why Im doing it, just let me be, Im old enough to work my shit out. Im also going through a hell of a lot, so Im not always going to be able to reign in my feelings and will have a go, I will be abrupt etc. She needs to accept that and move on, rather than dob on me to Mum everytime. Hell if I was doing the same, Mum's phone wouldnt stop dinging.

Ive been down with Mum talking again, I went to wake her up but ended up talking. When I went to get up I lost control of my right leg for a bit. My back pain is tolerable but pretty crap today. My shoulders are really bad, left is far worse of course. Im absolutly exhusted, Im pretty wrecked most the time but it was such a bad night last night that I am really struggling, but I still have to take Mum to the doctors yet. When Im done there, Im pretty sure Ill take some of my night meds, the ones with the sedative aspect and try and sleep. Its no point laying down, my head will just race and Ill stay awake. I really want to run away and hide, go to my bed and pull my quilt right up and try and sleep, its as much of an escape as I have. If I could run away from home and leave my mental and physical health concerns behind Id be gone but they would follow so I dont see much point. I dont see much point in much of anything. Im doing things like psychology, councilling, writing etc and I dont feel like Im making massive changes in my life, Im still pretty much as miserable as I have been, Im struggling with my depression still, probably worse, same with SI. Nothing I do is making my pain better, Im just getting worse and adding new pain to it. I dont feel like I am improving, I feel like I am getting worse.

I took Mum to the GP and then she went to the grocery store. I didnt go in for either, though while she was in with the GP I did some shopping of my own. I was in a fair amount of pain before we left, while she was shoppping I rang her to get her to hurry up as I had started to spasm and I had lost feeling in my left leg. By the time we got home, the spasming had settled and my feeling had returned but I was in heaps of pain, I can barely walk again, my shoulders hurt like hell, my left especially and the arm. Im exhusted, so tired. Ive taken some of my night meds and some pain killers and Im going to bed shortly.

I went to bed and couldnt get comfortable, Im just in too much pain, the one spot I did find comfortable I started spasming. Then while the left side shoulder is still far worse, my right side started to cause me problems. My back has calmed down however, its still sore as hell but like my shoulders, its very difficult and painful to lay down, more so stay laying down, in the same position long enough to fall asleep. Then there was the equally or bigger problem that my mind is just racing, Im not keen on music at the moment so I dont have that to drown things out, so Im just laying there thinking and thinking. Mostly Im thinking about the pain, my future in relation to the pain and the like. There's other stuff but thats the main things. Ive taken my normal night meds, so I have had extra of the one that has a sedative affect, it helps manage racing thoughts etc. Im hoping that this will mean I can actually fall asleep, despite the thoughts and the pain.

In response to: Re: It continues

tymeModerator25 Aug 2023, 9:39 pm AEST

Re: It continues

Hey @ClockFace ,

I'm so sorry to hear that this pain is persisting. It sounds so hard to live with chronic pain so that it affects your sleep too.

Do doctors give you any hope of being able to control the pain a bit?

In response to: Re: It continues

ClockFaceSenior Contributor26 Aug 2023, 5:46 pm AEST

Re: It continues

@tyme

Not at this stage. Im on pretty strong pain medication as it is, they arent too keen to increase it further. To be honest, neither am I. I mean I want to be in less pain etc. but the amount Im on now has pretty big risks, they just get higher the stronger we go.

Im now waiting for the MRI results to determine which direction we will take, from there they will review my pain meds I would imagine

In response to: Re: It continues

ClockFaceSenior Contributor27 Aug 2023, 4:06 am AEST

Re: It continues

I fell asleep for a few hours and woke up in a lot of pain, but I also needed to pee. I sat up for a while, dozing but I needed to be upright. I went back to bed and woke up a couple hours later. Im in a lot of pain still, my back and left shoulder really hurt. Im really grouchy, my sister has done a couple of stupid things that she found funny but just ticked me off more. I went into town, my sister asked if I wanted her to come, I said no, I just wanted to be left alone for a bit. By the time I got home I was in agony, my left shoulder is seriously so sore, as is my whole left arm, its actually uncomfortable to type. My back is horrible, its so damn painful. Im gonna go back to bed in a minute, I feel like Ive had so little sleep, Im completely knackered.

I went back to sleep for a bit, it was somewhat difficult to get to sleep, I was tired but I couldnt get my arm in a comfortable spot and I didnt feel well. Ive woken up and I still dont feel well. Im dizzy and feel just crap, my stomach is really average, Im not really making much sense of whats going on around me, its like understanding is at arms length. My left shoulder is still really painful, the bicep feels like someone has taken to it with a baseball bat. My right shoulder is sore as well which is making sleeping difficult. I can only really lay on my right side to sleep and Im relying on it more which is making it hurt more. My back hurts a fair bit as does my neck, Dad asked how I was this morning and I kinda grumped and he said at least your walking better, like that is indicitive of my pain level. I can walk just fine and be in a huge amount of pain, it just depends on the nerves being affected. If the nerves go to my legs then walking is an issue, if not then its just pain.

I think Ill head back to bed once Ive finished my drink, Im not loving the feeling/sensations I have at the moment so I might try and sleep through it. I am pretty tired as well, so I shouldnt have too much issue falling asleep. I didnt sleep annoyingly, I laid and rolled and hurt and got frustrated. Im going to have a shower soon, see if that freshens me up. Where I dont hurt, where Im not in pain, I ache so bad. Im really over it today. I feel horrible, just like shit. Even my mouth feels like I dunno, its just been chewed up and ash rubbed into it.

I went and had a shower and had a chat with Mum, I dont really feel any better having had a shower, I have a crappy headache, its a tension one from my neck, I can tell that. I feel really disconnected from the world, Im seriously wiped out, I keep shutting my eyes, I want to go to sleep but I know laying down is just going to lead to me thinking and thinking. Of course my back and shoulders are really painful.

Im a bit concerned, more so than normal, about my mental health. Ive been having some pretty intense experiences. The feeling of hundreds or thousands of versions of me all around me and I was trying to combine and interpret all the information from all of them at once. This feeling that Im not really apart of reality, that I am somehow septerated by a void, a chasm, between me and reality. Im having a lot of hallucinations, not big ones, just brief, people walking by that arent there, dogs running by, oddly often on top of a counter or similar. Then there is the rapid thoughts when Im laying down, its just like machine gun thoughts most the time. Then there is the SI, the constant SI. I sent a referal nearly 3 months ago for a psychiatrist, it really shouldnt take this long to get a damn appointment, I really need to have my situation addressed and treatment started. I would think that the level of pain that I am in is contributing overall. I know my hallucinations are worse the more pain Im in. The SI is worse with the constant extreme pain and each new issue to face. I think my family forget about my mental health and dont realise how debilitating it can be. Its not something visable, I suppose for the most part neither is my pain but there is nothing to indicate to anyone else that I am feeling like Im not in touch with reality and thats why your not capable of doing much.

It really bugs me, I was sitting watching streaming media and I groaned in pain and my sister asked what was wrong. I said, just pain. She replied join the club. Like she is in more pain or even can relate to the pain Im in. I kinda find it insulting that she thinks there is a similarity in our level of pain. I manage her medication, she doesnt get anything pain management wise except for OTC. Today she had one of the break through pain meds I have, that was it. She gets around and does pretty much whats she wants, she has very few restrictions due to pain. I have equivelent of 12 of those pain meds a day and then a break through med if needed and Im still in immense pain. Our pain is nothing alike, you dont understand chronic pain like I do. I dont doubt you have been in extreme acute pain, but nothing like this chronicly, so please stop acting like you understand or that your pain is worse.

My sister is in a mood, she is pretty constantly just saying random shit, she thinks she is funny and really important. She asked if she was bothering me and I said yes. She got grumpy briefly about that and then went back to what she was doing. Now she has sat down and started watching videos on her phone, while I am watching a movie and hers is so loud I have had to stop mine. I watch pretty constantly but just taking over is pretty rude.

Dad seems to be in a pretty lousy mood. He has been at a church thing for the past 2 days and he has come home and none of the stuff he does is done. Which really shouldnt be a suprise. If I/my sister could do them then we would be doing them regularly instead of him. He does them because we are disabled. Just because you have gone off for a couple days doesnt mean we magically can do those things for you.

Ive taken my sedative and some pain meds, my shoulder/arm is really bad but so is my back, Im having spasms on the sides of my back. Im really tired but Im sick of the thinking. Hopefully Ill get some sleep and give everything a chance to rest a bit. That didnt work. I was able to get comfortable but not fall asleep. I did have trouble finding somewhere to put my arm that did hurt, it was a little frustrating at times. My back isnt as bad but still hurts a fair bit, right above my butt crack.

In response to: Re: It continues

RiverSealModerator27 Aug 2023, 11:12 am AEST

Re: It continues

Hi @ClockFace

Thank you for posting here on the Forums!

It is a challenging thing to be vulnerable and you have demonstrated your resilience and courage in your post. Thank you for sharing about your life the challenges you face with your family and the pain.

I wonder do you reach out to the SANE Support Line to speak with a counsellor ever? You might find it really beneficial to chat with someone and talk about things. I will put their details here if you feel like connecting one day. Get support (sane.org)

Sitting with SI can be really challenging and speaking about that can be a relief when someone understands how you feel. Our counsellors on the Support Line can sit with you and talk safely about SI or Peer Support Worker in the Guided Service. Guided service (sane.org)

Please share again in the future and keep the Forums updated on how things are going in your life.

Take care

RiverSeal

In response to: Re: It continues

ClockFaceSenior Contributor27 Aug 2023, 8:34 pm AEST

Re: It continues

@RiverSeal

Yeah Ive spoken to them a few times. I speak to one of the SANE councillors on the guided services as well.

I find writing the journal thing I do on SANE really helpful, just getting things out is helpful and having it go to the site gives it some meaning. Like an normal journal no one is ever going to read doesnt work for me but on the off chance people read it on SANE helps.

In response to: Re: It continues

tymeModerator27 Aug 2023, 8:47 pm AEST

Re: It continues

Of course people read it @ClockFace !

Don't think your words are going astray.

What I found interesting is that you prefer to journal in a way whereby people read it.

I, on the other hand, am too afraid to journal in case someone reads it!

It just shows how different we all are.

However, I recognise this does not mean things are easy for you. I hear the pain and struggles you are having in every post. By journalling here and speaking to SANE counsellors, I hope you feel less alone in your journey.

We are hear for you.

In response to: Re: It continues

ClockFaceSenior Contributor28 Aug 2023, 3:01 am AEST

Re: It continues

I went to bed really early, like 8:30ish and woke up 3:30am. My back hurts a lot, though my shoulders arent too bad. I went into town and that got my shoulder going again. Im going to go back to bed soon, see if I can get some more sleep. I got a couple more hours, but I have woken up feeling really dizzy and have a craken headche. Im not at all awake and Im going to go back to bed in a minute. Im in a fair bit of pain, pretty well all over. My whole body is realy sore but back and arms are the worst.

I went back to bed and immediately fell alseep. I woke up really dizzy again and spaced out, I dont feel right at all. Ive taken my morning meds and hopefully I will feel better in a little while. My back is pretty painful, my shoulders are ok though, at the moment. Im incredibly tired, its not tired in the traditional sense, more like Im just out of energy.

I had a chat to Mum for like 3 hours and then laid down for about an hour. I still feel really tired and out of it, just not connected to anything. Like my sister and Dad are talking and its like they are talking on a speaker and they are right next to me. I kinda want to go for a drive and get away from them both, but I dont know that Im up to driving. They are winging about Mum and her stuff, amazingly the focus for my sister has been on her stuff that she has all over the joint and now she is pushing the focus onto Mum and her stuff. They both have shit loads of stuff, like incredible amounts of stuff but my sister does love to push how much Mum has as a way to kinda minimise what she has.

I mentioned to Mum about not being able to sleep during the day and Im just laying there thinking. I said that one of the things Im thinking about a lot is my back. Im really worried about whats going to happen going forward, are they going to be able to do anything? Am I going to be like this forever? What does it mean for work? so on and so on. Like Im really freaking out about it, I dont want to be on serious pain relief for the rest of my life and still be in pain. I dont want to have a heap of limitations on my life just around normal day to day tasks. I dont want to be left like this.

Dad just asked whats wrong and I said that I didnt feel well, then I explained further that I feel like the world is over there and Im here. He said "Oh nice" like he would like that. I said no, not really. He said he would like it. I get what he means, to an extent, but if he understood what I was feeling, what I was actually going through he wouldnt like it, he wouldnt make light of it. But it is what he does with my mental health problems, he makes light of them or minismises them.

Everything is so damn loud. My sister and Dad were talking and it was like they were yelling at one another and I want to tell them to quiet down, thinking that they basically where. Dad is now doing stuff around the kitchen and he is loud, louder than normal, so I think its probably me. I want to go and lay down again, but I know that I am just going to think so there isnt any point. The detatchment feeling is really strong, stronger than Ive had before and its been lasting a long time, again longer than it has before. If it continues for much longer I might have to get Dad or someone to take me into hospital, Im just as likely to take myself to be honest.

Im in pain, my back and shoulders all hurt a fair bit, but better than normal, just not enough for me to feel great about thing it seems. My right shoulder is worse than normal, but left is better than normal. Im really sick of being in pain, Im sick of doing all I can to avoid being in avoidable pain. Limiting how far I walk, how much I pick up, what I do in general. My life is focused on and controlled by my pain and trying to manage it. Now I have the shoulder pain, starting in the left and now getting worse in my right but I cant minimise the pain there, it has no definitive movements that trigger it. If Im not worrying about pain, I have my mental health to deal with. There doesnt seem to be anything I can do to minimise this at all. Increased pain means increased symptoms, randomly I hallucinate, typically visual lately. Im having the detatched from reality thing a lot, as I say today is pretty bad. The whole multiple me thing. All day, everyday I spend trying to manage the symptoms of my physical and mental health issues and its hard. A lot of what I deal with is invisable, so no one sees anything, they dont recognise the problem and typically they dont remember the problem exists. Its like I have a secret life of pain and misery that no one really understands.

My back is starting to get really painful, right in the lumbar area. Ive been sitting a lot today, mainly in the chair in Mums room, which is soft poofy chair which isnt ideal for me, I find firmer chairs much better. My shoulders are still not so bad, not like they have been, which is a nice change. I feel a bit more connected after having a really hot shower, just worn out still. Im gonna go lay down for a while, I probably wont sleep but it will take some pressure off my back for a while. It about the only thing Ive found other than pain killers to control the pain Im in. As expected I didnt sleep, my back still hurts a heap, my left shoulder is starting to hurt a bit. I think the reason that there is as little pain as there is, is because of this gaping chasm between me and reality today, I dont feel attached to shit, almost like my head is a floating blob in space.

My sister has taken to asking what Im doing, where Im going, what Im getting quite a bit. A little while ago I went to lay down and got asked what I was doing, FFS Im just laying down. Im not leaving the house or anything. I feel really trapt at home, I cant afford to leave, my medical costs are way too high and I dont see them reducing any time soon. I cant really go out much because Im in too much pain. I have no friends. My life revolves around medical appointments and procedures. I dont even have work anymore. I really dont need to feel like I cant walk around the house without being scrutinised as to what I am doing and why. I was going to talk to her tonight about it, I need it to stop but she got some bad news, well not great news, which she has decided to take to the extreme and carry on about. The whole world has crashed around her because she cant go away for a weekend and now everyones focus has to be on her. She is so freaking dramatic, she hit a roo in her new car, its done minor damage, now apparently she hates the car.

Things going to shit seems to be a competition to her and if something does goes wrong she has to play it up to make it seem like its worse than it is or that its affecting her incredibly badly. Its the same with pain, she acts like her pain is so much worse than anyone elses. I dont know if its that its acting like its so much worse or that it deserves so much more attention. She has this way about her that suggests that she has to be the worst off in the family in every way possible. She has this pathalogical need to feel the most hard done by out of all of us.

Its 8:30pm, Ive taken all my night meds and tried to have some tea, I barely ate anything, its the only thing Ive managed today. I felt pretty crap before I ate, now I feel worse. Ive got pain in my fight side of my stomach. I still dont feel right, just like Im just not really here, not really connected, I feel untheathered to the world, like on a scifi show where the umbilical cord rips apart from the shuttle pod. Just floating out into space. Im really tired, Im hoping that the night meds help me sleep tonight. I feel sick, but I think its more the not feeling right thing. My back is starting to get quite painful, walking is an issue, its pretty painful. Im finding it really hard to keep my eye open, to think straight, to stay focused. Im going to go to bed in a second and hopefully Ill sleep, even more so I hope I wake up and this is all behind me.

In response to: Re: It continues

ClockFaceSenior Contributor28 Aug 2023, 4:10 am AEST

Re: It continues

@tyme

I find the anonymity of the forums very liberating, being able to write openly to an audience is very freeing. When writing in a private journal it lacked purpose or meaning, what was the point in writing something no one else will read. Writing something that others can read and being able to be completely open gives purpose and meaning to me for what Im doing and is really freeing. Its like talking to a psychologist, without restrictions, no judgements, no anything.

In response to: Re: It continues

ClockFaceSenior Contributor29 Aug 2023, 12:35 am AEST

Re: It continues

I woke up early, like 3am with a horrible, terrible taste in my mouth. It was as if I had vomitted some kind of acid. It took forever but I replied a message on SANE site. Im playing with the idea of going into town to get a few things now and then probably going back to bed. Id go back to bed now, but Im pretty awake at the moment.

I went into town, damn its getting harder and harder to do, my shoulder hurt before I left but Im in so much pain now after driving. Its the action of moving the steering wheel, it triggers my shoulder. Im pretty knackered now, im gonna go to sleep shortly.

I got a couple hours sleep but woke up in pain, quite a bit of it. My back is pretty painful, its affecting my walking today, my right shoulder hurts but my left shoulder is really damn painful, it doesnt matter how I move it, what I do with it, it hurts like hell.

I went back into town and when I got home I went to check on Mum, she was awake and I asked if she had anything on today. She said yes, wound care. No one said shit to me, I have psychology today, no one took into account that I might have something. Dad just dumped and ran, he was off to a church thing. He knew I was really unwell yesterday and there was nothing about making sure I could even manage to take Mum today. My sister has appointments and shes out all day, so it just lands on me.

Ive just taken Mum into the doctors, over an hour in there, an hour of driving, all the time I was getting light headed and dizzy. We got home in time for my appoinitment, I really would have liked some time to have a lay down first but there isnt enought time for that. Im in a lot of pain, my back is killing me, so Ive taken some pain killers. I normally go outside for my appointments but I dont like my chances of carrying my tablet without dropping it and no one is home/inside.

I had my appointment, it was a good one, probably one of the most profound ones Ive ever had. I went and had a chat with Mum after that and then had a nap, I did actually fall asleep for a bit. I woke up feeling pretty gross again, that sick feeling I had this morning. Im really bloated and crap as well.

My sister is in yet another shitty mood, she didnt get her way with some respite, things went south. So she cracked the shits. Then Mum didnt do this or that, Dad hasnt probably been good enough and Im rarely up there. Im pretty well over it all, the house moves and shakes on her mood. That doesnt fly with me, I pretty much carry on as I like with little regard to her mood.

Im really dizzy and wonky again, its really unusual for me to be that way at night. I really dont feel great. My back hurts a fair bit, though my shoulder isnt too bad. I still feel crappy in the guts. The idea of eating anything is really unappealing, eating at the moment, for a long time has not been on the cards. Im seriously tired, it wont be long before I have my night meds and go to bed.

421 - 430 of 562

1...42 43 44...57