Messages

it does make me chuckle and I thought there might be a few others here who relate and find it funny, too 

dark sense of humour may make a difference

Sam - for what it's worth,  what you're saying about posting and trying to interact here seems like what I relate to - it's the major reason I haven't posted my own topics here for a long time and barely participate. My attempts to participate have often ended up triggering me and spiralling me out and the trade off has frequently not seemed worth it for me. A lot of online interaction feels both empty and impossible for me to relate to. It's an ongoing frustration and dilemma for me when I want to connect, yet end up finding it alienating. It's a conundrum I haven't found an answer for myself.

That said, I genuinely appreciate this site and forum, care about the people who come here, have great respect for the people who run and manage it,  and check in at times to read and occasionally respond, like I am to you now. It's helpful to me in a certain way, and I just come and go on my own terms without expecting too much from it in the way I wish it could be. That's just how it seems to be working for me.

I wish I could feel like I could participate more, but that has proved too challenging and counterproductive for me. And I don't agree that it is because you are pushing people away or failing to make the most of an opportunity. I see what you've said simply as expressing a frustration and confusion that you are struggling with - straight-forward and completely valid.

I have no advice or judgements or pat phrases to offer you, plus I would really hate for you to come to a site like this and be made to feel invalidated for your honest, non-attacking expression of your experience. But I do quite appreciate seeing someone else try to articulate this aspect of their experience when trying genuinely to reach out to find connection and support and meaning, yet finding it almost seems counterproductive.

Thank you - sincerely - for your post and trying to articulate this, cause I think it's a hard one to articulate, especially without being misrepresented. Not to mention the extra vulnerability of it - I'm not the slightest bit surprised you say you had a tough time posting it. I would, too. I respect you for doing so. Funnily enough, reading your posts here helps me feel a little less alone in this angle of experience.

cheers

Hi RA-Survivor 

So sorry to read of your experiences and situation, but also very admiring of your clarity and strength to survive and to reach out.

I really hope you can find a T that is a good fit for you.

Just in case this is helpful - my current T does not specialise in CPTSD, yet has a very open-minded, caring, flexible and adaptive approach and they are a really good fit for me. I am so grateful for their ongoing support.

I have also had experience in searching out Ts who I felt would be good because of their specialisations, but found I did not gel well with them.

It can definitely be a bit tricky finding the right person, but definitely important that you feel the fit works for you.

All the best and take care
sj

That's a great insight to have with an interesting angle.
Thanks for describing that 

Hi Eris
I'm so sorry that you are going through such an intensely triggering experience.
From what you have written and how you've expressed your situation it seems to me that you are doing amazingly well in the circumstances.
I really hope you can find ways to not be critical or down on yourself for how you are feeling, because finding this difficult seems completely justified.
As not alone said, please look after yourself. Sorry I can't offer anything more useful, but I did want to acknowledge your post and the weight of what's going on for you right now.

hi boat 

congratulations and commiserations on the diagnosis ...... that is, if like me, you found it both a relief to know what you're dealing with (as much as is possible with this, anyway) but a bummer that it's 'a thing' that's unlikely to clear up

the best shift for me was when I finally grasped and accepted that I had to REALLY listen to what my body was telling me it needed and didn't need rather than trying to make myself do what I THOUGHT I should do ..... interestingly this became easier once I'd finally discovered C-PTSD and started working with that.... still working on it, but getting better at it

I've already written half a book in one of your earlier posts, and I don't pop in too often, but I hope you are finding info and feedback that's helpful for you in adjusting and integrating

take care
sj

wonderful! ... well done 
it's reassuring to read stories like this, so thank you for posting it

wow, notalone
that was really powerful to read and so brave of you to both do and then share
thank you and please take care

[totally ok]

Wasn't sure where to post this, so settled on this General Discussion part of the Child board because it illustrates quite well, both pictorially and in words, how the child mind translates abusive behaviour from care-givers.

It helps remind me and reinforce for me that my mind has been programmed to sell out on myself for the benefit of others who are toxic and that it is totally ok for me to WALK THE * AWAY from toxic people, family, friends or otherwise.

NC and LC are healthy, justifiable choices - I need to tell myself that a lot to quell the toxic shame and guilt.

Hope this is helpful for others, too.

https://www.youtube.com/watch?v=VDKOY0ZTDPI

hello notalone   

sorry to know you've been having such a stressful time :/

I'm admiring how clearly you were able to identify IC storylines and then how sensibly you were able to respond to those  .... this exercise looks like a really effective one, so I'm very glad you shared this on the board as it has made me realise I would benefit from doing something similar - Thank you 

really hope things settle down and clarify for you

https://themighty.com/2018/06/anxiety-from-complex-trauma/?utm_source=engagement_bar&utm_medium=link&utm_campaign=story_page.engagement_bar/

In fact here is a whole thread on the distinction between the two. https://cptsd.org/forum/index.php?topic=3725.0 Please take a look, it was started by Kizzie, the Site Admin.

great thread 

I completely relate to this and appreciate the responses.

This is part of the reason I don't write much online, because I just feel too overwhelmed and maybe still too unclear and confused myself about the complexity and insidious subtlety of all the damaging, mind/self-undermining elements of my life - all the components that have melded together to disable me so significantly.

This year I started attending a little group for memoir writing. Most of us are really there to try and process our lives and not necessarily overly focused on the end result or publishing. We recently had a class where we were trying to narrow in on a theme to help us focus our work and I was really struggling. I had read out a couple of pieces in previous months which gave others some insight, but in this more specific focus and feedback class I verbally provided a further range of examples of cruelty and weird abuse, in the context of a life of apparent privilege. Everyone was silent and looked quite shocked. Their responses were both validating and unsettling at the same time. The woman taking the class, who is now fully diagnosed and compensated for PTSD after workplace bullying, ended up spending some extra one-on-one time with me and said she had initially had no idea how complex my story was and she now understood why I was so overwhelmed by it. Not that there has ever been any pressure to produce anything, it's actually a really supportive and respectful little group.

Anyway, this is something I've been contemplating a lot, lately, partly because I've moved to a new area and slowly starting to become more socially active and I struggle to know the best ways to introduce myself and answer things as I get to know people better. But also because I want to get more feedback from more informed people to help reflect back to me what it is I've been through. I have been wondering it OOTF would be a better place to start describing some elements of my FOO's behaviour...... I would love to have more labels and terms of reference to help give some shape to what I've been dealing with so that I can no longer be 'wrestling ghosts', as I put it.

Otillie's distinction between more tangible abuse and what is just profoundly confusing mind-messing is a really helpful one for me. Though others of you have described things so well, too. It is comforting to feel less alone in the craziness and confusion of it all.

(edited to add - some of my coping mechanisms and presentation style from my parents' 'culture' (for want of a better term) mean that I can appear more together and functional than I am. I think this has made it more difficult to get adequate support because not only have I been unable to adequately explain my history and my experience, but my attempts to do so have been easily dismissed and minimised. As well as having people tune-out or think what I'm saying is too much because there are so many components, so again it seems to be easier for people to simplify and dismiss things. SOOO grateful for my current T. Finally found someone I can slowly unravel my story with who validates that what I'm saying is significant. But yeah - definitely makes getting support harder.)

hi Rainagain

I've been contemplating some very similar things in recent times.

I told my T in our last session that I feel like I've hit a kind of wall where I see how messed up the world is, how upsetting it is to me, but also how ridiculous it seems for me to keep trying to jump through endless hoops to be more 'functional', and I don't know how to bring myself to try anymore ... I suddenly feel like I'm worn out from trying to carry the burden of responsibility of a broken world - little old me is not the problem!!!
My T completely supported my insight and feelings on this.

I really am finding it impossible to strive for improvement and recovery - and questioning what those even mean. I'm so utterly exhausted and tired of it all! (different from ever before). It seems that's been my whole life and I'm still on disability, mostly house-bound and triggered by so many things. Yes I feel there has been growth and learning that have improved some quality of life - and I'm so grateful for those - but not anywhere near as much as I would have hoped or expected given the enormous degree of effort I seem to have invested over so long. So, yeah - I feel I've hit a wall with 'Why am I trying so hard?' Is it futile and is it maybe even me getting in my own way? I just seem to need to try and shut my mind off from a whole heap of stuff, now, and keep my focus on really small, focussed tasks and goals like doing knitting, or gardening or photography or attend selected, safe-seeming music or arts based social activities, but all only as I am able, with as little pressure from my IC as possible. I focus on the things that are creatively productive and/or pleasurable as much as possible, because I am so tired of feeling horrible and useless. But if I feel like I'm trying to do them because it is the work I need to do for recovery, then I find I just can't do it. I just can't try anymore.

My thoughts might be a bit different to yours, but like Jazzy, I really related to what you said:

Just getting along and minimising my distress is my goal, I think I gave up the idea of recovery a while back. But maybe that giving up is acceptance which is part of recovery?

I dont know what I'm saying here, maybe I'm asking if it is ok to aim low, forget about total success and just hope for mild improvements, or even just not getting any worse?

What you and 3R said about acceptance makes sense to me. Liked what Woodsnome said about expectations, too.

I actually feel a bit like my recent sense of 'giving up' might actually be a bit of a breakthrough. I feel that 'aiming high' is me buying into goals that might not even be my own and that prioritising 'distress minimisation' is really enough, anything else that seems doable is a bonus, but if I have to work too hard to 'succeed' then I haven't got it in me anymore. I have doubts about this attitude, but as I said - it feels like it might be a breakthrough for me - that there's something new and freeing in how I am relating to my need for healing 'progress'.

Hope my ramble's a bit relevant. Still not sure of all this myself, but what you have raised feels a bit familiar.
Take care

[Syndrome]

Hi Boat

I rarely pop in here, since months back, so I only just saw your latest post.

Since it's been a month since you wrote it, I realise you may already have found something in way of local support groups.

I'm in Australia, so I can't speak to direct experience of anything in UK,  but just in case it is still helpful, one way I try to make sure the group is coming from the right place is to see if I can find their position on CBT (which may help with coping, but should not be used as a cure, which it unfortunately often is) and GET (Graded Exercise Therapy, which can make people worse) as valid or primary treatment options. If the support group are good they will be very critical of these approaches as they have been used to very damaging effects on people who have the key symptoms of PEM and OI (as i mentioned above), which are significant indicators of a clear type of pathology (I make this point as there is STILL    no clear diagnostic testing, so all sorts of illnesses are probably being lumped together under a 'Chronic Fatigue' banner, which also sidelines the important delineation of 'Chronic Fatigue Syndrome' .... almost all types of pathology cause fatigue, but not the same type of unrelenting, deep exhaustion which is made worse with exertion, etc).

For the record - one of the deaths I mentioned above was of a young Australian girl named Alison Hunter. I was told in conversation with a friend of that family that she died taking part in a special program at a Sydney hospital for young people with ME/CFS which was focussing on using GET, and I think also CBT. My recollection of that conversation is that her system went into shutdown (which makes sense in the mitochondrial/ cellular energy disfunction model). It's been many years since I had that conversation, so I cannot recall specifics for sure, but was told something along these lines with the warning to be very careful with my activity and to not underestimate the illness (IMPORTANT - she was very sick, so I don't want to scare you or anyone who is not at that more extreme level. Just to be aware of the importance of not pushing things and not accepting GET as a valid treatment option if someone tries to steer you in that direction).

There was a highly disputed trial in the UK called the PACE Trial, which focussed on the whole CBT and GET thing and they ended up diddling their results as they were so bad, but still tried to justify and defend it (!!!!  ). But it has been soundly pulled apart by some very acute minds. I now use that as a reference point for where an organisation stands. If they are in favour of PACE, imo GIANT RED-FLAG!! KEEP AWAY!! If they are critical of PACE, then they are the 'Good Guys'  . The thing to be VERY aware of, especially in the UK, is the way the psychological/ psychiatric aspects have dominated the ME/CFS treatment landscape. This has led to very inappropriate and detrimental treatment (I just deleted what I wrote about the case of UK woman named Sofia Mirza because I got worried it might be triggering for others reading. I hope information is still easy to find for anyone interested in her story).

Psychological components can affect a range of health issues, but that does not negate the actual pathophysiology of any illness. Cardiac issues are a great example - stress is a known underlying and aggravating factor, but once actual heart disease has manifested it needs to be treated in an appropriate medical manner, not just psychiatric drugs and psychological interventions, or anything that had been shown to worsen that very physical condition.

I just did a quick search and came up with an article critical of PACE on the ME Association website, so my personal feeling is that they are worth checking out.
https://www.meassociation.org.uk/2017/07/the-pace-trial-the-making-of-a-medical-scandal-29-july-2017/

Again, I've written a fair bit , but hopefully useful info and to point out that where treatment attitude comes from matters a great deal. Hopefully you've already made some good contacts for advocacy grounded in this attitude.

And I totally hear you on the surrender thing, even though I STILL struggle with this close to 15yrs down the track. I've got a lot of fight and energy in my nature, so the surrender doesn't come easily to me  . Mind you, not having other supportive elements in place has meant I've not had much choice a lot of the time (eg; not having stable housing), but I've gotten much better at knowing I need good advocates in the health-care system so do what I can to find the right people who are happy to write the right things to help me achieve the safe, quiet space I need to try and surrender as much as I can. I certainly feel very worn out on a lot of levels, these days, and glad I now have stable housing of my own so I can let go, deeply rest and try to recover as well as I can.

All the best to you
sj