Lived Experience Forum

[ClockFace]

@Bow 

Ive been in pain for 20+ years. Ive had sleep issues for years as well.

Used to be that I would wake up 5 or 6 times a night before I got diagnosed with bladder cancer. Once I got treated for that it went to once a night thing.

Yeah I generally get up and have a drink and something to eat and sometimes I go back to bed

[ClockFace]

I have Bipolar 2 with psychotic features (shortened to Bipolar through out this piece), my experience with Bipolar is hard to explain. I have been on medication for it for about 10 years and always compliant so  many of the normal symptoms arent an issue for me anymore. The hypomanic side doesnt really happen anymore, before treatment they were rare to begin with. Primarily it was spending money, like a lot of money. I got a credit card and a cash only credit card and I bought all new furiture for my appartment, PS3 and a high end PC bit of stuff for the kitchen etc. this was before I was diagnosed and I am still paying it off.

For me Depression is the real issue, I still get it often and for long periods. I can seem totally normal on the outside but on the inside there is a crushing weight, there is a well spring of darkness and of hopelessness. I can struggle with depression for months and years at a time. Suicidal ideation is often an issue but I have never attempted. When depressed I stop or lessen the frequency of showering, I dont change clothes, not even into PJs etc, I lessen my activities, I put in the minimum effort, I get grumpy, I sleep more, like lots more, I dont want to eat and my mental state degrades significantly. Im depressed so much that I would just assume I am, its just the degree of the depeeth of my depresstion

I struggle with mood swings, generally they last a while or there are decent breaks inbetween. Like I will be incredibly frustrated over nothing for a day or 2 and then go back to being however I was, normally depressed, which I would say is my default state. Then I will go to being just angry. What gets me is generally speaking either people dont acknowledge it or I am really good at not showing it but it doesnt seem to be recognised that I am going through mood changes or that I am depressed.

Even with my psychotic features, family doesnt realise when I am struggling with them, even if I tell them that I am having them its like I said I went to the toilet. My main thing is hearing screaming, tens of thousands off damned souls screaming in my head. Rarely, it can be projected externally from walls etc. It can be brief, like an hour or so or it can last for up to 4 months. I get visual hallucinations, these vary but most recent has been people watching me, this twisted into delusions that there was a demonic conspirincy against me. I ended up having issues with believing cars were chasing me, to the point that I nearly started taking evasive actions. I also have tactile hallucinatioins, they are rarer but terrifying. In the interest of not breaking guidlines they were demonic in nature as well and Ill leave it at that.

I recently started believing the world wasnt real, that my parents were impostors and everyone else wasnt real, the only person that was real was my sister. I would see cracks between this fake world and the real world, cracks were like portals that I could simply jump through and be in the real world, with real people and real parents.

While I felt everything was true, the hallucinations, etc everything was factually happening or factual in reality, I knew it wasnt. When it happens its a fight between what is heard, seen, felt etc and the knowledge that it isnt real. I worry one day that I will lose that fight, one day I will not be able to tell the difference between what is real and what is not.

Thats something I not often talked about, there is a lot of fear and apprehension associated with Bipolar. Apprehension of mood changes, I might not have typical hypomanic moods but I have periods of poor decision making, often with financial consequences. But just simply not knowing if Im going to wake the next day grumpy or angry can be hard. There is a lot of fear for me in relation to psychotic features, when will they start, will it just be hallucinations or will it be a full psychotic break. Am I going to be at work dealing with it, is it going to interfer with my duties. I mean hearing screaming for months on end has an affect on how you work and in a demanding role like mine that can be difficult to explain why Im not meeting targets and KPI's

I dont know if my experience is typical, my psychotic features are triggered by stress not mood changes to depression as far as I can tell. I would think from what I have read that Im more likely schitzoaffective disorder though treatment would likely be unchanged. Most my psych meds are for schitzophrenia now days but me being me I want to know one way or the other for sure. But thats my experience with what they have diagnosed, I wanted to post this in the Bipolar Thread but I couldnt find it so if admin read this and can advise Id appreciate it.

[FloatingFeather]

Hi @ClockFace,

It sounds like your experiences with Bipolar is pretty tough. A close family member of mine has bipolar (diagnosed many years ago) so I know somewhat the rollercoaster ride that it can be. It's not easy and can be very exhausting. I really hope you have a good professional team to help support you as I understand how much support may be needed.

Re your question about a dedicated thread, there's not actually a thread dedicated to bipolar. It's more the case that there are posts about bipolar where the subject line includes the word bipolar - these posts maybe found throughout the Forums (typically `something's not right' and `our stories'). I have tagged your post `bipolar' for anyone that looks up the topic but I think it being posted in `something's not right' is probably the right place for it to be.

Here is a link to other posts that includes the word bipolar in the subject line if this helps Bipolar link.

Warm regards,

FloatingFeather  

[ClockFace]

Today has been torture, Ive not been able to take my pain meds much as I had a doctors appt around midday and I had to drive myself. Then off to community mental health and that took longer than expected then I had a big meeting for my sister, I attended on phone and then off to pharmacy to actually get the pain killers from the earlier doctors appointment. So, hardly anything pain killer wise to avoid the drowsyness but a fair bit of pain in its place.

This meeting for my sister was a big deal, it was all about getting her support when she gets home. But a lot of the meeting surrrounded around Mum. Mum is a big reason she is in the situation she is in. The whole buy swap sell thing Ive spoken about earlier is a massive factor but just the general treatment of her by Mum is a lot too. 

I knew that Mum and Dad fight or at least Mum would have goes at Dad on a pretty regular basis but it came up a bit more whats happpening, Mum is full on abusing him. I feel bad for him because I didnt realise to the extent the abuse was going on, Dad's sort of alluded to stuff before but not the detail he did today. 

With the Buy Swap Sell stuff I stopped doing it years ago. At the time I caught a lot of flak from my Mum but also my sister and Dad. They werent happy as they just saw it as more work for them. But in the meeting Dad said that they had talked later on and decided I was doing the right thing. They never told me and I always thought they held a grudge all this time, its a nice feeling that they did and do actually see that I was doing the right thing. 

This was reiterated in the meeting by those running it that my decisions have been correct. I dont take her food down, if I do its a frozen meal and she can heat it not me (she has a microwave in her room). Basically anything I think she is capable of doing I leave to her,  Im not running after her. sister and Dad do. I just got off the phone and Mum has sent him a shopping list, fine, but then he goes on to say that it looks like he's cooking tonight. He's had a big day and she can have frozen meal, he doesnt have to cook.

I think its sad that my sister/family have to deal with my Mum, who believes she has done nothing wrong, before she can really start to work on her own issues, the issues behind and due to Mum. The issues of assult when she was younger, there are so many issues to be addressed and she has to wait to deal with Mum and what she is doing. Seriously a 64 year old should be able to see what she is doing to her daughter and family. If she cant maybe she needs to go get help but Mum refuses to because she doesnt believe there is anything wrong with her. 

Dysfunctional is one word to describe our family. Im happy that some of what I have done/said was correct but sad that my sister and Dad couldnt follow suit. Im sure I am at blame for some of my sisters situation, I mean Im human and I make errors and if they need to be addressed Ill take that. Dads the same, hes blaming himself quite a bit but I think the mother in his ear is playing a big role there.

[tyme]

Hugs @ClockFace ,

I’m so sorry to hear how hard it is.

Hang in there. I am sitting with you.

[ClockFace]

As many would know I had surgery recently and there were complications. I struggle to walk from one end of the house to the other, when I do I am in incredible pain so I avoid it like the plauge.

My Mum as I have said doesnt come out of her room however she did yesterday go down to see my sister with my Dad. They met at a cafe that is attached to a supermarket. After meeting with my sister my Mum dragged my Dad around that supermarket for 4 whole hours. Proving that she can walk and walk for long periods. 

My Dad takes my Mum her tea pretty much every night, I dont think he should, but thats besides the point. Tonight he was out until quite late so, Im not sure if it was my Dad or my Mum, but I got a message from my Dad asking me to take a meal to Mum, he had told her I would. 

So I can barely get around, It has been a big day with no real regular pain management, but tell me to take her a meal when she is capable of walking around a supermarket for 4 hours. What does that say about the care for me, for the amount of pain Im in. It just made me feel like such a piece of shit and that I am not cared about at all

[tyme]

I'm so sorry to hear of both the physical and mental pain you are enduring @ClockFace .

I have been following your posts and you are doing soooooo sooooo much for someone who has just had surgery and is in terrible pain.

Due to this endurance and super-power you have, do you think this is why people seem not to care? They think you can just do everything?

Have you been able to tell you family how much pain you are in?

[ClockFace]

@tyme 

Oh yeah they know. Dad has generally been good but Mum doesnt seem to care, its all about her and her pain

[ClockFace]

After the Big Meeting yesterday Dad took the long way home and had a big think about things. When he got home he and I had a talk. We do not have the closest Father and son relationship but this was quiet open. He, after 4 months of me telling him so has realised this is life and death for my sister and he needs to step up. He feels like he has failed her and not protected her from Mum and while I agree there is a level of responcibility on my sisters part as well added to he is trying to protect his family from his family and that is a hard place to be in. When my sister gets home he will, I think, this time be protective of her but Im hoping that he doesnt go overboard. I dont think he yet realises that I have been doing that protective role for several months which is part of why I went on leave from work.

We were both pretty honest and while not said directly, he wont commit suicide partially because of my siister and I, but also because of his religion. I admitted to him that I was suicidal (though I think he missed that) but the reasson I dont is my sister. It wasnt meant offensively to Mum and Dad but I wont leave my sister to grow old without anyone. Her and I will live together for the rest of our lives at this point as neither of us have partners or the financial backing to live seperately. Even if I did have enough income for me to live alone my sister wouldnt and I would look after her

I think Dad has had a big realisation in relation to my sister but it has yet (and may not) dawn on him that similar is happening in my world and he is doing the same to me.

[ClockFace]

My sister is finally coming home. Dad is cleaning the house to make it nice for when she gets here. Im sitting on my arse unable to help. I mean Ive done a couple small things but nothing major and its hard to just sit like a fat lump and watch/do stuff. Hes working hard, like really hard and I cant get him to sit for even 5 min

Mum wanted to see him last night when he got home from the meeting which was quite late. Dad was dreading it because he was thought it was going to be about the meeting and Mum pressing for information. But it wasnt, she had a list of things she wanted him to go around the city with a trailor collection things she had wanted from Buy Swap Sell. Dad kinda lost his shit. She didnt know but 1/2 the meeting was about her buying stuff on Buy Swap Sell. She needs to stop and she just doesnt get it. I was pretty proud of my Dad when he told me what he said to her, he stood up to her and thats not something he does easily. But he is still pretty mad about it this morning.

I had to ask Dad for more money, I was hoping to get the insurance payment yesterday but that didnt happen. I hate asking for money, I suggested a different way of him giving it to me and he was suprisingly cool with it. He hasnt done it yet which I wish he would but at least Im covered for a bit longer.

We got on about talking about masks. He said how my sister wears a mask and I said that I did too. Less and less I wear a mask that Im ok, that Im not depressed etc. But then I said that we both learned it when we were with kids, with church, with church people coming to the house all the time. We learned early on to appear as a happy family, as happy kids, we didnt express problems etc. Dad's responce was we were happy kids. How would he know we didnt get a chance to express anything else. I remember being quite miserable, I was getting picked on and beaten at school, what did I have to be happy about. Its odd how people living in the same house remember thing so differently.

I would say I wear a very thick mask, I dont show the depth of my depression. I struggle to hide my pain when its bad but normally if Im just sitting I dont show that Im in pain. Its not acceptable to show being in pain, depressed etc. You can be those things but dont show it and certainly dont allow it to get in the way of doing the things that you are asked to do or are expected to do. 

Im getting better at saying how I am feeling but the mask is still there so I dont appear suicidal eventhough I am so its hard for them to accept that I want to end it while I appear so placid. And Im like that at hospital, Im in huge amounts of pain but appear so placid. Im certainly not one to be making a scene pretty much ever. Ive never been allowed too. It was a bit different for my sister she always wanted an audience but I was always in the background