Thanks for taking the time to read my ramble and to reply. Yeah I don’t make myself easy to understand do I… I find calling a spade a spade difficult. I’m attempting to change that. I was misdiagnosed for so many years. Any mention from me that my behaviour was not in my control or that I thought I was experiencing flashbacks, was dismissed by those who were supposed to look after me when I needed the help the most.
I started this particular journey in my 20s, on constant high alert, believing anyone could be the person that would take me out and anything could be the thing that would be the end. Oh, that, and that everyone I cared about or went near was my responsibility and that I was failing them all. I was hypervigilant, hyperaroused, very depressed, asphasic, extremely distracted, lost and confused (yes the list continues but I’ll stop as I’m now bored of listing the obvious), and they put me in a room with a load of people and we had to do things like talk about our favorite CD and what we had done that day (it was like a classroom and it felt like they thought we were insolent children) one day they made us play a game to learn about team playing, which I didn’t understand I’d I’d never really had a problem working in teams before that. The game was balloon volleyball… yes… balloon volleyball… and they disciplined me when I reacted less than acceptably and told me I needed to address my ‘anger’ issues.
No kidding, you think?
Financial cuts in our system around that time (mental health budget was halved), led to a whole load of people being misdiagnosed and put into groups together so a government target box could be ticked and the public would get what they paid for…eh em.... The treatment they offered me and gave me was the opposite to that I needed as was the medication.
There were a few hospital psychiatrists I’d have 1 to 1 sessions with over the years too and they seems to be obsessed with my parents and upbringing.
In hindsight the body of evidence that it was always ptsd or Cptsd is pretty massive. I’ll never understand why general practitioners, mentors, support workers and homeless charity staff could see it in me and showed me much needed empathy but those with all the power and the qualifications wouldn’t even entertain a conversation about ptsd or OCD (but that’s another story)
I realised ptsd fitted what I was experiencing, but I deliberately didn’t read up on it because it wasn’t mine. I was never ‘allowed’ to call it that. Not until over 20 years after I first asked for help. For me, self pity is one of my red flags to disaster, but honestly, let me have this one will you: it’s been so lonely dealing with this and not being able to talk openly about it for fear of being dismissed or worse still, judged as dishonest.
I didn’t feel I had the right to use ptsd language to describe my very obvious ptsd symptoms and experiences so I just gave up trying to explain them and instead tried (and often failed) to cover up what was going on.
I also didn’t want to dismiss the struggles of those with the diagnosis who spoke openly about it, by taking about myself, just in case I was wrong.
So that’s where the poems come in. Years and years of wrapping it up in disguise (unless you know of course). Metaphors on metaphors all in words that sometimes might rhyme and be rhythmically pleasing.
Some is pretentious rubbish and some is actually quite good, but it all talks about the same thing throughout. Right from when this started when I had no idea what was going on.
I mean, the layers upon layers are a confusing mess. Even now despite everything, and all the evidence. And all the kind people over the last couple of years trying to convince me that after the gaslighting and wrong diagnosis of the past, this is where I’m at now, I still believe in my core belief system I’m controlling it, faking it, faking panic attacks (how???? When my startle response is always so excessive), faking everything I experience, (which I now find out is a symptom and part of derealisation, I think, and quite comon). This state, the panic and the fear and the drifting… take so much of my time and energy and it hurts all the time. It keeps me from doing what I’d like to do, what I need to do and lots of it makes me unsteady, clumsy and dangerous. The flashbacks are harder to explain away as some attention seeking nonsense. If only that was the case. I’d swap the fear, the panic, the drifting, the people I hurt, the flipping starry fuzzed fragmented fabric of reality, for something I could control. Any day. If I were that clever and that calculated, I’d have applied that genius somewhere far more sensible than living like this.
So I'm here now, only just starting to feel brave enough to own it, but too frightened of those mental health doctors to go back to them for treatment. Too frightened of most of my piers to mention it to them. I’m here, hiding behind a username. A couple of very kind external therapists, have over the years, given me their time and their emence skill and kindness - I guess they saw how much I needed it. However, we were always just getting me ready to address the real problem and I was never ready and so I still haven’t had any treatment specifically for ptsd.
The thing I mentioned in my last post about what I do when I get startled in public.
-It’s not something I discuss usually and never with strangers or even most people I know, It’s not fun theatre or deliberate planned moves, it’s me trying to cover my tracks in an hurry and make light of what really, I should have been able to acknowkage long ago. Humour is my first and fastest conscious line of defence. It gets me into a lot of trouble, (it’s dark and sometimes so dry or deadpan people often don’t know when I’m serous or when I’m joking - sometimes I don’t), but lesser so than many other things. If making people laugh at something I do deliberately, takes the focus off what they just saw me do - as a fight or flight response, then I’ll be a clown, when I’m able to, as often as I’m able to. Then I’ll walk off as soon as I can in some kind of reverb bubble and loose my shit in private.
My point is that although thats what I’ve been doing for years, im tired, so tired and I can’t keep pretending it’s not what it very clearly is.
It’s the result of a series of events I didn’t talk about effectively that happened in my late teens and 20s. I didn’t get treatment I needed following the enevitable breakdown and wasn’t able to process anything. I self medicated and spent many years trying not to be ill and being ill anyway or just not caring. I collected one or two more events which seemed to have joined the others for the complex fun of it. I mean, what ptsd isn’t complex??
I have the correct diagnosis now, along with a couple of verbal apologies. I’m not out for vengeance - all I ever wanted was to get well enough to function in some meaningful way and perhaps support some others who’ve been in similar situations.
Those other diagnosis that did so, so much damage, and never ever made any sense to me or those who really know me, are acknowledged by the psychiatrists as void (or as close as you can get when they will all cover each others reputations). At last.
Relief in a way, but it’s also not that easy to just suddenly accept I was right all along and not some manipulative liar with nothing better to do.
Now I’m actually allowed to own it as my experience too, and not just long, from a vast distance for the connection with others who know (to some extent, as we are all different), how it feels to be this way.
I’m ‘allowed’ to research it and join forums without worrying I’ll be found out as an imposter (though of course I’ll never stop looking over my shoulder and everywhere else for that matter).
I have something that makes sense to tell people if I need to explain my ‘behaviour’. Labels, despite what so many people say about them, do matter.
It’s on my medical record and I can carry one of those cards in my wallet to show anyone relevant when I have no words and they don’t know what to do with me. I finally have permission to call a spade a spade and it’s alien territory and I don’t know where to start.
But maybe I do, I just joined this forum, completely by chance because I wanted to thank
@enough for a historical post I found that changed things for me. A place of strangers who I feel safer talking to than most people I know.
It’s just in time because I do seem to have entered another phase of unraveling, this last year has been ‘interesting’ and I know for certain I very much am not in control of this stuff.
And for the record - I agree, those Tshirts - I was attempting ironic humour there - those T-shirts are far too comon and often worn by people who I’m not likely to get on with. Though I mustn’t judge - one of them may become my new best freind.
I would love to be able to go out and not worry if the next person who approaches me won’t do something stupid, (or even something normal), and end up as part of a flashback until I come around and realise what I’m doing.
My new poem of the week is ‘sometimes it’s okay to be not okay’
I’m an semi-untreated mess, currently with no T, still trying to fake it to make in the world of the more-well, looking for work again and trying to get on with stuff, (but often not making it out of the front door or remembering to eat or get dressed and when I do it’s usually problematic), because what else is there but to at least try until the next right thing comes along?
There are lots of people like me who had to wait half a lifetime falling over, again and again with no anchor, in the wrong system - you are not alone.
I hope this ramble makes sense to someone. And if it doesn’t, it’s helped me to write it. If you read it, thank you for your time. It might not make much sense to lots of people. A lot of what I say that I think is simple and straightforward doesn’t - and that’s okay. I’ve never shared in a forum before this week, and I really am throwing caution to the wind here, so please be gentle.
