Lived Experience Forum

[saltandpepper]

Sometimes it feels unbearable to live like this. Not remembering, not having the answers. There's huge gaps in my memory, I cam only remember snippets. Not knowing who did what, not being able to remember, not knowing who I can trust to help piece it all together. It's so fuking exhausting. Feel like screaming and crying just to get it out. The frustration, the confusion, the pain. I'm learning more and more about the life I've supposedly lived, the life I've spent a life time blocking out. Why would you want to remember? It's a good question. Because even though I can't remember it all, it still haunts me everyday in everything I do. I don't remember but I can't forget.

I'm so tired of trying to figure things out, trying to make sense, and so tired of having to find the energy to face the past. Because it's not enough that you have to deal with shit, but trying to recover lost memories as well makes it so exhausting. I just want to remember already so I can move on with my fuking life

[outlander]

hearing you @saltandpepper

i dont really have much advice but im listening

@eth @Sans911 @Maggie @jem80 @frog @Appleblossom 

maybe you guys could share some advice?

[jem80]

@saltandpepper  @outlander @eth @Sans911 @Maggie @frog @Appleblossom 

I know what it's like to have "lost memories" from your past. After I was hospitalised from psychosis I had issues with my memory. It took a couple of years before my mind started to recover and "restart" what my mind had remembered.

The trauma from our past gets blocked as it seems surreal or too much to comprehend. It takes time to figure out what is a memory and what isn't.

My family informed me of things that have happened and because my memories started to come back at the time I knew it was true. My past life of the person I was before becoming unwell eventually came back. It took time but I did realise of the good memories that I had amongst others.

Its difficult to relive past memories because you want to move on. I have to say that the memories I have from my past I still think about them. They don't control me, however they remind me of where I have been and as I reflect where I am now I know that it is about forgiving myself for what I've been through. I also know how much I have accomplished and the challenges that I have endured to recover my life to live fully as I do today.

Its a slow road in recovery when it comes to memories, some will come back, other memories will come if you are prompted by someone and then there are some memories that you might not recover at all.

I hope this helps. Unfortunately it requires a lot of patience with memory. If you feel that nothing changes perhaps see a GP or mental health professional to get some neurological tests on your mind.

[greenpea]

@saltandpepper  Hi saltandpepper I have schizoaffective disorder which is schizophrenia with a mood disorder. About 10 years ago or more now I was very ill with mania, hallucinations and delusions.for around 18 months. I cannot remember that time and if memories do come back my mind quickly protects me by pushing the memories away again. All I can remember is that they were bad and in the past. Personally I also think there is some kind of brain damage due to the stress I was under during that time.

Can I ask why do you want to remember? For me anyway I think it is best that I do not remember and that I move on with my life regardless. Be kind to yourself. Love greenpeax

[eth]

Hi @saltandpepper  and welcome to the forums.  It's good that you've found us and are reaching out.  Hi also @greenpea  @outlander  @Sans911 @Maggie @frog @Appleblossom @jem80 

@saltandpepper  I have bipolar 1 and complex and chronic PTSD.  I wasn't diagnosed with the bipolar until I was 46 despite having had it probably since I was a teenager.  I've had many periods of mania with psychosis during some of them as well as a long history of traumatic events.  Both f with your memory and also impact on each other. 

With psychosis I only remember what seemed real to me at the time and have often had people, particularly family members, tell me that I'm wrong, that things happened differently or in a different order or not at all ( at which times I simply have to concede to their version of the truth and somehow integrate it with my own in my mind). 

With PTSD the traumatic events actually alter the way your memory works, the neural pathways.  You can google this (e.g. memory and PTSD) and there's a lot of studies about it. 

I don't know your diagnosis or history but it sounds like you're experiencing similar to what I was stuck with for many years.  I didn't even know I was in a coma after a s attempt for 10 days in 1998 until last year.  And there have been many periods of chaos during mania (which often onset after a traumatic event)  that there's not enough words or energy to detail here where I remember snippets and places and people but can't fill them out or put them in sequence.  For many years I felt like I was carrying a bag of jumbled jigsaw pieces and not even sure I had them all.  It really frustrated me and still does at times but I have come to a point now (57) where I have to accept that there are some things I will never know and it doesn't help manage now to be caught up in trying to find and order all the details.  Doing EMDR therapy with a psychologist I've seen for 3 years has helped a lot with bringing up deeply buried memories and processing the feelings around them.  This is just me speaking from my own experience, not telling you how it should be for you by any means.

One thing that has helped a bit is that I write short stories and poems about my experiences and manic adventures and sometimes share them with other people I've known a long time including family members and doing that brings out their recollections which occasionally helps me order things.  

Hoping any of this is helpful to you and happy to chat further if you want to.

Just tag me using the @  symbol followed by my name  i.e.  @eth 

[saltandpepper]

@outlander @greenpea @jem80 @eth 

Thank you all for your responses, and everyone else who has stopped by here.

I've read and reread all of your responses, thank you all for sharing your experiences with me and offering advice, it's much appreciated.

@greenpea In answer to your question of why I want to remember, in short, because I don't feel capable of accepting not knowing and continuing on with life. I need to know, it's the only way I feel like I will be able to sort my shit out and move forward with life.

@eth I really appreciate your response, a lot of what you've said resonates with me, especially your description of carrying around pieces to a jigsaw puzzle. This is often how it feels, having random pieces and having no idea how they fit together and seeing that there are pieces missing. From your post, it sounds like you've had a Hell of a time, so I hope you are in a good place now and coping well.

I have done a little reading on PTSD re memory, but not enough. I'm interested to learn more about how it can affect the way your memory works, I will look into it. I definitely feel that the experiences I've had as a child and even through my teenage years have had a huge impact on my capacity to form and retain memories. I feel like my brain has been doing that thing where it blocks out all new and old memories where it perceives them to be associated with past trauma. But it feels so severe, and it affects me in the present day. Losing memories that are relatively new, and in some instances not being able to remember things at all that have occurred in adult life. I guess I feel like if I could just remember things from my childhood, if I could just remember enough, it'll help to stop that defensive response in my brain. Does that sound crazy?

I've been seeing a psych for about 2 years now, he's very careful with me since I don't have a lot of memory to work with. He says he doesn't want to create false memories. It's slow moving, but I feel comfortable seeing him and I have made progress with him. A couple of sessions ago we did a bit of work and some memories of my late teen years started flooding back. It came as a bit of a shock to me, but also has me feeling hopeful that maybe we can uncover memories from further back.

It's hard to sort out which memories and issues are affecting me in the present day. It's hard to make sense of whether some of the issues are connected. There's a few "experiences" from my early childhood that I really wish I could remember in entirety. The first instance I don't recall at all, the second, I remember parts of but not all of it, and the other memory is a jumbled mess of snippets.  These 3 moments of my life are where my attention is focused. There are other parts of my childhood that I remember fractions of that don't paint a great picture, but these 3 are the ones that feel most significant to me.

My parents divorced when I started High School, and I lived with one parent while my brother lived with the other. We were separated and I lived alone with my mother and as much as I choke on this word, she was, abusive. I find it really hard to say that. For a long time, I thought it was normal, it's only now that I have a son I can see it's not normal. And with the help of my psych, I'm sorting through all that mess. It bothers me not knowing if my memory issues are a result of the childhood trauma or the years of living with my mother. I honestly don't know. The memories from my time living with her are easier to prompt than anything predating that, but it always surprises me when something comes forward. It's incredible what you block out, without even meaning to.

Anyway, that's probably a very long reply, but thanks everyone for your help and a chat, much appreciated.

[eth]

@saltandpepper  I really resonate with what you've said.  My traumas go back into childhood too and include family abuse, csa, dv and other assaults.   

I guess the thing to try to be focussed on (for me anyway) is that I am who I am now (warts and all), I have goals and I work towards them.  The more I can focus on that, the less the mixed up and absent memories plague me.  I was so caught up in the past that it was really hard for me to even wrap my head around the fact that having goals was possible, let alone form some.  (That is complicated by still being triggered at times but I recover from that a bit easier these days since doing the EMDR).  My goals are pretty basic - improved health and wellbeing, increased transport independence, increased social and community involvement and improved relationships.  If you still have children at home there's always the goals you have for them too (mine is now 32 and has their own life so it doesn't apply for me anymore).  I'm told  the next step is to remember how to have dreams, not just goals that relate to everyday matters.  e.g. goals are more about now, dreams more about the ideal future.  I'm not there yet, but have supports helping me stay focussed on my goals.  Getting NDIS has been part of this, but I also have family close (I live in a cabin in my brother's back yard) and a peer mentor through the local disability alliance.  I had many years of total isolation in the NT before moving here for family support so I do get what that's like, and do feel lucky to have the supports I have.  Plus my team of GP, psychiatrist and psychologist - who have communicated with each other for the last 3 years.  Unfortunately my psychologist had to take early maternity leave and I'm starting with a new one this week - (her leaving was hard after seeing the other one most weeks for the last 2 years)  so I don't know what to expect or really even how the new one works yet.  

Why I'm saying so much ... don't mean to bombard you .... but hoping to give you some hope that it can get easier gradually without necessarily filling in all the gaps.  I like to say "That was b4, this is b5"!  

Take care, Eth

[saltandpepper]

Hey @eth thanks for sharing your experience with me, definitely not feeling bombarded by any means. I always find it helpful to hear from other peoples experiences, especially when I feel I can relate to them so closely.

I definitely see what you're saying re focusing on the here and now. There have been times in my life when I've felt that, but not now. At the moment I feel consumed with the past and needing to figure out as much as I can. But it is in the back of my mind that I may not get the answers and when it comes to that I'll need to accept it. It's reassuring to know someone has been here and found a way to accept the reality of not knowing. It's reassuring, because right now, the thought of never being able to answer the questions I have sounds unbearable.

I'm not sure I'd describe your goals as basic, I think if you're wanting to cope with shit and get out of bed everyday, those are the only goals that really matter. They're important goals, and ones that I feel people tend to overlook (myself included). I remember a long time ago when they had my High School reunion get together, I didn't go, because I felt ashamed that the only thing I'd managed to achieve was getting out of bed every day. But you know, I look back on those times now and see it really was an achievement for me. I could have very easily given up, but I didn't. It's not the type of goal I imagine most people have, to survive, so yeah, didn't go to the reunion but I'm not sure what sent me off on that tangent. Sorry. Oh yeah, I mean to say that I get where you're coming from, that there was a time in your life when you didn't imagine having goals. I've felt that too.

Yeah my son is 3, I'm pouring all of my energy into giving him the absolute best life I can possibly give him. Becoming a parent is really what prompted me to start dealing with my shit and start facing the reality of my childhood. I sure as Hell don't want to repeat patterns. It's incredibly difficult sometimes, if ever I feel myself getting frustrated or angry around my child, it becomes triggering and just sends me down this spiral of self hatred and depression. I have talked to my psych about it, he helped me to see there are normal "frustrated" responses. E.g if I say to my son not to do something, he doesn't listen, I ask again, he doesn't listen, I ask again and tell him I'm going to be cross if he doesn't do as I ask, he doesn't listen, I get cross. When I talled to my psych about this, I felt like I was a monster for feeling frustrated, for getting annoyed and finally for raising my voice to him. He helped me see that there was a progression and that I told my son I would get annoyed if he didn't listen. He thought that was important, that I didn't go from 1-10 straight off the bat. At the time it made me feel better, like I had a healthy response to the situation but even writing this now I feel like punching myself in the head for being a pri*k of a parent. I really struggle internally with this. I would never want my son to feel what I felt, to experience what I experienced, to look at me the way I must have looked at my parent. It breaks me up inside to the point that any time I feel annoyed or frustrated around him I feel like he'd be better off without me. It's my biggest fear in life, that I'll wind up repeating behaviours. Uh, not sure what prompted that either, sorry again going off on tangents.

So you have a good relationship with your brother then? Was he around for the things that happened in your childhood? My brother is a massive support for me, and also helps me piece memories together where he can. It's hard trying not to rely on him too much because it all effs with his head. He's never dealt with shit either but his memory is far better than mine. He's older so he sort of adopted that protective role and took care of me a lot when we were kids, now that I need him to look back and talk about our childhood he still tries to protect me. He doesn't tell me everything, which is frustrating but I get it.

I feel incredibly anxious at the mention of you having to start seeing a new psych. I'm not sure how I'd cope if mine wasn't available. Did your current psych pick her replacement? I'm sure she'd only let someone she trusts and recommends see you. I really hope that transition goes well for you, I know it wouldn't be easy.

Thanks for the chat @eth and sorry for the rambling there. Really appreciate you taking the time to share here with me

[eth]

Hi @saltandpepper  sorry I've had a lot on my plate the last few days and haven't been on the forums much at all.  It means a lot that you feel you can open up to me, not just rambling at all.  I'll try to respond more tomorrow or saturday and answer your questions.  I'm deep in the mire this week with having to find extra evidence to go with my public housing application and haven't had a lot to offer anyone.  Take care and stay kind, Eth

[jem80]

@saltandpepper  @eth 

It really is about living and not just surviving life as we know it. It's good to have goals in life, positive ones to persue. It's good to hear that you haven't given up. Life always throws a curveball at us and sometimes we feel like giving in, however there is something that helps us see the achievements that we make in life, even if they are small in comparison to others.

Whilst I don't have any children, I can only imagine some of the frustrations that you may have with your own son. The fact that you can monitor and communicate your feelings, demonstrates that there is compassion towards your son. Just because we have mental health issues, doesn't mean that we are not normal. Everyone has normal emotions and behaviours, whether we are a mother or father of a child, whether or not we have mental health issues.

It's good that you have a supportive brother.

@eth I hope that things go well for you with your public housing. Evidence is always a tricky thing to get as it's about the right type of information to present to strengthen your case. Hopefully you get a place. Try and think outside the box with evidence, what can you offer? Who can speak on your behalf, professionals, family, etc?