Lived Experience Forum

[ClockFace]

Just a note when I say angry or mad I mean words that the filter will block, 2 words that  make a "swear word". Angry/Mad just doesnt properly represent how angry/mad I am. 

This is a topic post not a running crap show of my day.

I was thinking about what  I wrote yesterday and prior to that and it amazes me how willing and open I am on  here. I dont typically talk about this kinda shit, even with my psychologist I have been reserved but on here Im not, Im just me, Im open and honest, its weird but good.

The online grief forum thing is, I dunno, Ive registered, lodged  in and it wants me to register again from the login page. Makes no sense. I give up. I dont know how to process the feelings I have around what my sister did. I dont feel like I should, like I should be allowed to, but Im really angry what she did. First time, ok Im not happy but it happened. Second time, you learnt from your first attempt and you had a real good go at it. At leaving me alone. Im sad she felt this was the only option and she couldnt get help to prevent it. Im sad that she still thinks its the only option. I feel like shit that I wasnt enough for her to stick around for and that I wasnt able to help her enough.

I all honesty Im pretty mad in general I suppose. With all my medical conditions and having to deal with the mental BS, hallucinations and the like. Being in pain for 20 odd years has made me somewhat bitter, not having my family understand how much pain  hurts and now having  what was supposed to be a short recovery time and no more pain turn out to be a drawn out process and still no guarentee that the pain will be gone. Add to the fact that I may have to go through this every 6-9 months, Im going to have to pound painkillers and sleep a few days then work while taking lower dose pain meds and try and deal with the pain for who knows how long.

Now I have the fun of bladder cancer, regular procedures where they put a scope where you dont want it into your bladder to see if there are any tumors. If there is another procedure to go in and remove the tumor. Thats if your lucky. So far I have had a low grade, non-invasive tumor, but that doesnt mean future ones will be, they could be worse. You dont  know. Every time you have a cystoscopy (first procedure) you are freaking out that you have a new tumor. Then if you have a new tumor your freaking out what its gonna be, while you wait for your TURBT and waiting for the results.

Now I have tests to see if my heart has a blockage, so again freaking out until I have the test and then wait (a month) to get the results.

Im sick of waking up feeling like my some one has chopped my head off, shit down my neck and sowed everything back together poorly. 27 different medications a day, Im not going to feel well to say the least and its not like they can identify a particular medication causing the issue, its likely a combination of all of them interacting together.

My  mental health ticks me off no end, Im never sure when Im going to start having hallucinations, now we can add delusions, not beliving the world is real, my parents are impostors and other people are fake. So thats a who barrel of fun. Medication galore, now seeing a psychologist and psychiatrist and having for find the money for that. Not to mention the entertaining mood changes. For more entertaining fun Im trying to get Income Protection Insurance due to my mental state, so I had the joy of explaining  this to some random insurance officer.

If it were just hallucinations, I doubt I would have a huge issue but having delusions etc makes me sound, forgive me for saying, insane. I do feel like I am becoming more and more 'insane' that I am losing my grip on reality more and more. My medication being  prescribed now is intended to treat schizophernia more and more. Im on multiple anti-psychotics. I feel like Im losing it more and more and more rapidly.

My anxiety really becoming an issue, a few months ago they had to put me on a medication to stop my hands shaking as it was impacting day to day life, including my work life. I mean they would shake so bad that I would find tying almost impossible. They still shake, not as bad, some days its a bit of an issue but managable. For the most part now, when out in public I have my arms folded to hide the shaking. I do my best in most circumstances to hide it, around my GP Im ok, at home Im ok, if Im seeing a new doctor not related to my mental health I very much hide it.

I suppose there is an element of shame but I really dont want to answer  questions around why Im shaking.  I had to have blood taken recently and the  person doing  it noticed and made a statement and a question about it. It wasnt meant to be negative or insulting but it did leave me with a bitter taste in my mouth. So, yeah I hide it when ever possible.

I am really angry about my medical and mental issues, but at the same time there is a degree that I am ok with it all which sounds weird to be in two states. I mean there is nothing I can do about any of it so what else can I do. Am I just burying my feelings, am I just ok with it because its all I got not because I have actually dealt with anything.

[FloatingFeather]

Hi @ClockFace,

You have every right to feel the way you do - you have gone through and are going through so much and despite all this you still look out for your family so well. I really hope the universe gives you a big break and things start to really get better for you soon. 

I hope it helps a little that you can voice your truth on the Forums. I think it's so important that there is a safe space for anyone that can be 100% transparent and honest. 

Keeping posting as much as you need to - we are here to listen and to support you.

Warm wishes,

FloatingFeather 

[ClockFace]

I dont want to do this anymore (not suicide) just life as I know it. Living at home with my parents. Being sick and in pain, dealing with my mental health issues, just all the BS. Having nothing I enjoy, love, want to do.

I once had a life that I loved. It was all a facade and lies but I had people I called friends, I had a purpose, a position of (fake) authority. I didnt owe much and lived alone. I ended up with a girl, again lies. I didnt have diagnosed mental health issues, though they were definately showing. No medications, I didnt even have a regular GP, let alone regular specialists. I didnt see my parents much, I was always at Church, my life revolved around it. I wasnt out of pain but it was minimal.

I dont reallly want to go back to those times, I mean it was all fake and lies and deceit but Im so sick of the life I have now and I dont know how to move forward. Is there a chance that I can have a time or a life that I dont completely hate. That I can have something in my life I can enjoy, Im not asking for something I love, I dont know that I will get to love something again but maybe I can enjoy something, maybe I can have something in my life I can look forward too.

***Mod to be clear I do not want to harm myself or others in any way***

Im just like if shriek was the Grim Reaper Im Donkey shouting "Pick me, Pick me" If its going to be another 40 years of being sick, being in pain, worsening mental health, fighting to work and that eventually being taken away too the just get on with it.

[tyme]

I'm listening, hearing and reading along @ClockFace .

hugs.

[ClockFace]

I woke up feeling like  shit but Im determined today to do my washing today. First load is on. Once I have some clean and dry clothes Im determined to have a shower, not sure if that will be today or tomorrow. I did actually hang up the load, not doing that again, pins and needles and a fair bit of pain. Have put another load on but asked Dad to hang it out. Weirdly or not, did not include any underwear, feels weird having someone else do anything with them, let alone  my Dad. I do have plenty to get by, Im not reusing lol

My next goal is to have lunch, which I have gotten out. Im not sure I actually feel like anything but I know I should so I will. Then I aim to do a load of dishes. The dishwasher is partially full so its not a huge challenge. But its me doing stuff to help, far more than I have for the past week.

Im planning on going to see my sister tomorrow, I checked and they can get a real chair for me, what they have is this stupid window sill/bed with the thinnest mattress permitted. There is no back, I mean there is the window but that is too far back to lean against while sitting.

Entertainingly I started the antibiotics for the infected boil and a new couple has grown pretty  much overnight. I dont know if they are infected but mostly they do get infected. One is in a really annoying spot and its pretty uncomfortable sitting down. I really hope once they get the infection under control they can get a treatment of some description that stops them at all. It would also be good if they can stop the acne. Ive had it since puberty but it was mainly on the back of my shoulders. Now days its pretty well everywhere and its not little black heads, some are but they are huge.

Im not very keen on relationships in general, its not my thing. I didnt have much in the  way of friendships as a child, I had a couple, one who I still see regularly. So, making friends is not something Im good at nor have much of a desire for. The ones I had that I havent remained friends with mainly ended as they were fake, making fun of me or friends out of association (Church) and there were stipulations on our friendship, once I stopped going to Church they stopped being my friends.

Girlfriends even less so, Ive had a couple, cheating and lying ended them (them not me). The idea of another girlfriend is a definate no. Its been like 15 years since my last girlfriend and have basically no interest in another. My medical and mental situations dont encourage the idea of a relationship. I mean who wants to be with a guy who spends so much time dealing with medical issues and having procedures. Not to mention the mental health issues and how would romantic time be with boils and acne. I also dont want children for a number of reasons but a big one is I dont want to pass on my mental health issues.

Im a big guy and I have body image issues, though I present to family etc that I dont. I mean how can I not with boils and acne like I have. I try and lose weight, I go down a bit but soon bounce back up. I struggle to stick to a diet, I go ok for a while and then something happens and I have to stop or modify.  

I have decided that I dont want a girlfriend for a lot of reasons but I think the fear of being rejected is a big one. That said, no friends or social life where would I meet someone.

For some reason today I have been incredibly tired, I cant seem to 'wake up'. Im getting a few things done but not heaps and I just want to go back to bed. I did however have lunch and did the dishwasher which for today is an achievement.

My hands have been shaking pretty bad today, right one in particular.  Poor Dad got the brunt of my frustration while trying to have lunch, weirdly we synced on that, rarely have any meals with other family members, anyhow I got frustrated by it and said loudly, not yelling, if this F hand doesnt stop shaking Im going to throw this fork in your eye.

When they are bad its incredibly frustrating, I mean trying to eat lunch and getting part of it in your mouth and part of it around your mouth is a tad annoying. I can type but I often  double press the key and have to backspace and correct, again a tad annoying.

I hadnt noted the severity of my shaking as I was typing ok, it wasnt until I had to use a fork that I realised how bad it was, problem was I had eaten a bit so I cant drink anything for a while (gastric thing) so I couldnt take anything to settle it for like 30min after I finished. 

I did get the Griefline to actually work so see if I get some help via that

I just posted quite a dark post, its been eating at me a while. I try to put on a OK face for my family and people around me but clearly Im not. I dont want to commit suicide, after seeing what an attempt has  done to me and my family its not something I could do to people I care for.

Im more honest on here and its nice to be able to be honest somewhere.

Im hoping I can get a good psychiatrist that can help with medication etc. I mean Ive had a recent medication change that is still fresh so not up to full potency. Im hoping that they can recommend a good psychologist, someone who can work with me and do more than talk with me, I want to be treated not someone to talk with. Eventually, Ill get an appointment with the Guided Services and Ill have a councillor which I think is more talking with. I think Im gonna look into councilling services external to SANE hopefully not too expensive, like all the above hopefully I can afford it all. If I cant hopefully Dad will help. As much as I am against suicide I think its an illness, part of a bigger illness and if left untreated then its going to win and I dont want it to win so I got to get treatment.

[ClockFace]

So I have been busting to go and see my sister ever since I had my spinal procedure but havent felt that I would make it safely and able to manage my pain. Well today I decided that I would have a go at it, I had managed some distance driving but not huge distances but I was confident I would make it and not be in too much pain at the end. The drive down, I got a bit sore, sitting with my sister a lot of pain, the seat wasnt ideal, the way home, OMG. You know how there is that flaming sword around the garden of Eden, thats not there anymore, its been shoved just above my butt crack. The lower back has had a very large horse kick it and in general Im in a lot of pain. All that said I saw my sister and I will deal with temporary pain to do that.

I told her about Mum, them saying its overuse of prescription medication. She was less than happy, like yelling in a hospital mad. Everyone is fuming about it. Calling ambulances, going to ER, trying to look after her while she was off her face etc. but my sister would stay up watching her on a baby monitor to make sure she was ok because Mum was acting out of character.

She wasnt in a good mood, she wanted to punch thing. She couldnt sit still. Her medications are minimal so she is not being treated with medication for anxiety, not really. They've diagnosed adjustment disorder which is not much of medication treated disorder. I think it really gets to her that my issues are mainly medication treated. I dont think she realises the amount of therapy that goes along with the medication. How much effort on a daily basis, even minute to minute it takes to control my mood, I mainly have the one because its the one I can most easily move into regardless of the mood I am in. How much effort it takes to manage emotions, make sure I am responding with the correct emotion. I have to worry about managing psychosis, I regularly have to deal with thousands upon thousands screaming in my head for weeks to months. I have to carry on with life, go to work, normal chores etc. Semi-regular tactile hallucinations that I wont go into but are terrifying. You know about the rest. Medication is great, it keeps me out of hospital and functioning in society but its along side techniques and stuff I have learnt in therapy or for myself.

I love my sister dearly, I think she is georgous, she has a wonderful heart, very intelligent and very loving. I think thats what I miss in her the most at the moment, she is still beautiful but the loving heart is missing. She still cares but in a different way. I told here about my psychotic break, yeah they already told me, what do you want me to do about it? There was no discussion, no are you ok?

I told my Mum that my sister was Shit, Really Shit and there was no follow up. I dont get it, I dont understand why she doesnt show some kind of anything. She doesnt go and see her, in 4.5 months of being in hospital she hasnt once gone down to see her and we have made provisions for her to be taken etc. Everytime they talk it ends up in a fight. I dont know if that relationship can be repaired. I dont think Mum cares to actually try and I dont think my sister wants anything to do with her.

My sister and Dad just dont work together. Dad cant do anything right, I think Dad does try but there is a bit of a moron about him. He doesnt know how to have a relationship with her and I think she holds stuff against him which gets in the way. He's just done too much to hurt her for her to allow a relationship.

I dont know why my sister and I have the relationship that we do, I mean we get on pretty well. We can say what ever to each other and we might get mad but we make up, we forgive and move on. The only person she speaks to while she is in the facility has been me, other than psychiatrist etc. But my sister has had a more than normal trumatic life, like all kinds of abuse at the hands of 2 different boyfriends. One of which I introduced her too, neither of which did I protect her from. I dont know if I was really there for her after either. I think at the time I was either on drugs and drinking like a fish or coming off it all. If I wasnt I was working as many hours as possible and ignoring my family pretty much altogether. As far as brothers go I havent been great. Then came the whole Bipolar thing. The whole drinking thing again, she supported me through both and many more. I think this stuff she is going through might be the first time I have actually been there for her.

But here I go failing her again. I have been there for her for around 4 months, but Ive had to start pulling back because of my Mental Health issues and now I am having to pull back even more because of the psychotic break. I have to limit my stress as much as possible as it wouldnt take much for me to fall back into another one or one thats worse. So again, I cant be there for my sister when she needs me, not the extent that I should be.

Even today, Im with her and she needed someone to talk to so I said to talk to me and she says that she cant do it, she cant keep doing it. Like keep living life and I cant help, I cant talk to her about it because Im in the same boat. I Dont want to keep doing this either, as per my previous post. I dont think suicide is the answer, where she is pretty committed to that, but I dont know what the answer is and I dont think saying it will get better is much help. For her, her current diagnosis can be treated and quite quickly as I can tell but all her life shit before it not so much and I dont think its being addressed. Somewhere along the line that shit needs to be addressed and thats a whole huge package to unwrap. So without comparing and acknowledging there would be a huge amount of work things for her can get better. Me, I can have periods of time that are better, but they never last. I can take meds, see a psychologist and a psychiatrist but its all temporary for me, its all just trying to lengthen the time that is good and shorten the time that is shit. But, the shit time is a real shit time, its hard to explain to anyone else (I know no others with BP) how shit a shit time is and I am expected just to carry on like there isnt a problem. She has a chance, a good chance to heal. I dont, Im not going to get better.

I dont want to labour the topic but the permancy of my MH condition has been on my mind a fair bit since my sisters comment about her having to be all work and its just meds for me. I will grant that there is a lot of meds, there is a lot of changing meds cause they stop working, a lot of trying different meds to find what does work. There is a lot around meds. There is therapy, Ive yet to find a therapist who is 1/2 way decent for bipolar. But its all a permanant thing, the players change but Im always going to have Bipolar 2 w/psychotic features or an illness with similar symptoms ie schitzoaffective. Im always going to be on the look out for triggers, ask me to write a list and I have no idea but if it happens 9/10 ill realise a trigger. I also get to have psychotic features, been through them before but they suck. If Im really lucky now I have psychotic breaks. This is all of course if I am not paying attention to triggers or in more often than not situations, my triggers are not being respected by others or in the case of m sister I ignored them for her betterment. FYI this is why Im not thinking Bipolar 2 with psychotic features, but Schitzoaffective Disorder because my psychotic symptoms start due to stress/anxiety.

After nearly 5 months of hell with my sister and the family in general my Mum decides to text me from hospital about what we should do. I basically told her its up to the psych at the moment for my sister. Told her my plans. Told her she needs to see a psychiatrist and find out from them who she should see as a therapist. Dad is doing his thing by working outside and processing things that way. I dont think there is much we as a family can currently do for my sister. I think Mum should be as little involved as possible. Dad a bit more and me a bit more than that, but for the most part just support her but leave it to the psych. In the mean time, deal with our own shit and stop deflecting.

[tyme]

We are listening @ClockFace 

You are not alone. We hear how tough it is for you night now. 

I also read of the dilemma you are in how you love and want to help your sister yet you also need to protect yourself.

We are sitting with you.

[ClockFace]

Its an interesting and difficult position to be both a person experiencing mental health issues and being a carer for one.

I suffer from Bipolar 2 with psychotic features and I am caring for my sister who was diagnosed with Borderline Personality Disorder and subsequently changed to Adjustment Disorder. She is currently in a mental health facility after her second suicide attempt. She has been going from one hospital to another due to both mental and physical health issues for about 4 and 1/2 months. In that time she has managed about 5 days at home in which time she attempted suicide twice.

I started to be her carer a few weeks after her first admission to a hospital, basically Mum doesnt come out her room other than to go to hospital and my Dad doesnt get mental health at all so it was left to me. Of course you all understand what being a carer to a person in hospital means, but lots of conversations with doctors etc.

Im currently not doing well mentally but it had been like 10 days since I had seen her due to spinal procedure. The comment was made that she couldnt keep doing this, doing the crap of life. And all I had was to agree because I dont want to do this any more either. Bit of a difference she wants to try again, I dont want to try at all.

I dont know how to be there for a suicidal person when I can completely see their point?

[ClockFace]

I hope this is ok, this is not an attack on religion of any type.

I grew up in a pentacostal home, church was life growing up. If we weren't at a church meeting, we had church members at home, Dad was preparing the next weeks sermon or music to be played in the following weeks meeting. Everyone in the family was or became involved in church activities.

The pentacostal movement believed very much in the spiritual aspect of Christianity, that the Devil was a real being along with demons etc. We believed that God and Jesus were literal and had a direct impact in our lives. Angels exist in a literal sense and if we were chosen God, Jesus and/or angels could visit us/talk to us/directly instruct us. The Holy Ghost was ever present and worked to impart the will of God in our daily lives.

There was a lot of preaching on how we are in a battle against the devil and his fallen angels. A lot of preaching about hearing the voice of God. The unseen was very real and has a daily impact in our lives.

I was involved in this my upbringing. I left for a number of years but joined again later in life, becoming a leader and eventually an elder. Having been out of the church for many years writing the above sounds quite insane, I dont mean to be offensive but from the outside in its bonkers.

This all has shaped and impacted who I am as an adult. It is no wonder my psychosis centres around the devil, demons and hell.

The reason for all the babble above is when making posts on Facebook, hasnt happened here, you get responses like "sending prayers", "You need Jesus", "just believe" etc Its just no. Please I dont want your "prayers" as innocent and well meant you are saying it, its offensive to me. It brings along all the baggage of my past. How does talking about God etc aid my psychotic symptoms of demons and the devil.

It sounds innocuous enough but keep your religious babble to yourself. Just wishing you well would suffice or not saying anything.

[ClockFace]

My Mum comes home today. In our  discussion (via text) she said that yet again the doctors dont know whats wrong. Except according to my Dad they have stated that Mum is over using her pain medication. Mum has admitted that she will take extra if its a bad day. We and the doctors have tried to get her to go on a Webster pack (I and my sister are on them) but she doesnt want to because she would have to open the next day's packet to get more pain killers. She doesnt get that taking extra pain killers is a bad idea and the root of her problem.

My Income Protection Insurance Claim is still pending, they have asked for more information, they want information from my psychologist and psychciatrist, I pointed them in the direction of my Urgent Psychiatrist but Im not sure if they are going to make me hold out until I see my ongoing psychiatrist.

But what this means is I continue to rely on my Dad for my financial support, which means asking him for more money. Its not a pleasant experience, I mean he will do it but he will bitch about it first. He thinks I should just go back to work and he will look after my sister. My sister isnt going to confide in him, she will tell him the basics but will go into more detail with me, like tell me that she is going to attempt or has lighters etc. Excluding that, I have just had a psychotic break, not to mention the lead up to it, Im not in a psychological place to manage work and my sister and my Mum and my Dad and well me without the who psychotic break. Im taking extra medication to calm me down, we all know the one I mean. Twice a day and I am still really anxious. I mean 1/2 the time I am looking at an old medication I used to take, one that is basically the go to medication to help mental health patients. I know if I take it in the dose I have that I will chill out completely, probably sleep,  but I wouldnt be anxious for a bit. That said, this medication was replaced by another medication and I would think there would be complications if I take both. Not being able to say the name of medications really makes it hard to tell stories.

I dare say that given my current mental state, not to  mention the issues with my spine at the moment, I just dont see me getting medical clearance to return to work and as much as I would like to go to work, even for 10hrs a week I dont think Im mentally able to. Im pretty sure if pushed I will have a proper break from reality and I will find myself in a bed next to my sister.

So I dont foresee that I am going to be returning to work anytime soon, nor do I forsee that my income protection will start being paid in the near future. So It is off to Dad to see if I can borrow some more money. I dont want to come across as some spoiled rich kid, Im far from it. Mum and Dad are middle class at best. They have done well financially given where they have both come from and worked hard for it. They expect no different from my sister and I. The money I am borrowing is coming from their mortgage and I am expected to repay that money along with the interest. I honestly cant afford it but what else am I going to do, I cant live without some form of income. I need to pay my medical costs. I have a couple of vices, I smoke rather heavily, but given current circumstances even my Dad doesnt think I should try and give up. I have been for a long time but when my sister got sick I started smoking more and more.

I also drink, non-alcoholic, but fizzy drink, iced coffee, poweraid or mother. Even if I drink water, which I was doing significantly prior to my sister getting sick, thats bought. Granted the brand I like is cheap but as far as Dads concerned water from the tap is free, instant coffee is cheap and a can of coke a day is a nice treat.

Before my sister got sick I was doing a lot to better myself, to try and lose weight and be healthier but with all the going from home to hospital, her moving hospitals, new diagnosis, new treatment, outbursts, ER visits, suicide attempts, my wellbeing just took a back seat. That has meant that things like vices have gotten worse

I would dearly like to return to what was normal life, work, a bit of stress, my sister being annoying but her and I talking about Mum and Dad, just the sucky level of stress we had. At some point my sister has to come home, at some point life has to return to some form of normal. At some point, I have to recover and go back to work. At some point life has to turn back into life, sooner rather than later would be nice.