Let's Get you Sitting on a Chair

or, Please Stop Inconveniencing People

Why on earth does it matter whether or not I sit on a chair?

The only conclusion I can come to is that it makes everybody else feel more comfortable (well, everybody who's boring and boxed up in the norms of society...). 

Is it an Autism?

Today the lovely people at the dentists' surgery got treated to a visit from my Oortizum (see Harry Thompson's page recently for this to make more sense - there's been a theme about identity-first language and everyone is joking about trying to find an Autism that is lurking somewhere, somehow existing outside of a person. Anyway, I digress.).

I was trying to process a change to my expectation by flapping gently with my Tangle and rocking back and forth before I left the surgery so I could let my brain accommodate the new information and work out what to do next. The receptionist asked if I was OK to come back next week. I replied "yes" and continued regulating. A few minutes later this loop repeated itself (in retrospect, she probably meant "please leave now" and also you are being strange and making me and the other patients uncomfortable, but this is not what she said). A few minutes later she repeated yet again and my brain went bang. "I keep telling you yes! It's fine, it's fine, it's all OK" as bits of my Tangle went flying all over the waiting room.

I managed to find a corner to crouch in to gather myself and let my brain and body do their thing. The poor bewildered lady went for backup. I had forgotten to wear my lanyard - a lesson I could probably learn from, although I'm not sure how much it would have helped in this situation!

I do not want your chair!

Thenceforth the main thing the noisy, fast-talking, incessant-questioning (but also very well-meaning) dentist seemed concerned about during my meltdown was that I sit on a chair. What?!

He didn't get the point that this wouldn't help from a) my ignoring the suggestion b) my getting more distressed as his insistence became stronger c) my shouting "no" at him and getting even more distressed (if you know me you will know I am NOT a shouty person!). 

Only once I had later had time to calm down (They got me a drink and left me alone and made a plan and told me what would happen. And brought me my bits of Tangle. So really they were very lovely!) and was able to talk again and he once more asked me to sit on a chair, gesturing to one across the room, did I ask permission to stay where I was (on the floor in the corner by a chair). He said I could stay in the corner but could I sit on the chair. I finally managed to express "it doesn't help to sit on a chair" and he gave it up as a bad job and agreed I could stay where I was.

Neither member of staff was unfriendly, they just didn't know what was happening and didn't know what to do. They were feeling a little desperate as I wasn't responding (again, to people who know me this would be a positive sign that I am working on recovery). I could tell this because the dentist urged me that I would have to answer his questions about how to proceed or he would have to send me away into the cold which he didn't want to do. He was at a loss as to what to do with this perplexing and unpredictable individual.

Ah look, the people are behaving

So perhaps my sitting on a chair would have made them feel better. I would look normal to them and anyone else coming in and they would feel they had helped me because normality was restored in their waiting room.

But the thing is, I wouldn't have been OK, or not as quickly. Crouching and being in a small space help me to feel safe, and this makes my recovery quicker and my stress levels after the incident lower, reducing the risk of further overwhelm a little.

For these people the sign that I was OK was sitting on a chair, and the sooner it happened the better. But for me that would not have been better. It would not have meant that I was feeling better. It would have meant that I was sitting on a chair. Less regulated than I could have been. But behaving normally. Putting on "normal" behaviour doesn't magically make the normal behaviour helpful to me, and it doesn't change the way my brain works. 

So next time you feel tempted to ask someone to change their behaviour, just check whom you are trying to benefit - do I want them to feel better or do I want them to make me feel better? If they're harming themselves or someone else then absolutely they may need to change. But maybe what they're doing is just what they need to be doing and maybe I could be OK with that. Maybe if I'm OK with it it will help others feel more comfortable around "unusual" behaviour, which will mean more people can be more themselves in more places more of the time. And when people know they can be accepted rather than making people scared or uncomfortable, they might just have a better life.

I searched for unusual behaviour on Google images and this was the result 😂

Also a note:

Double empathy problem. He didn't know that I knew they were trying to help. He kept reassuring me of this later on so it was obviously bothering him (and even rang the GP to get them to check on me - a whole other hilarious story!). I had no animosity towards them but they did not know this: my behaviour, distress and shouting were due to my brain not being able to deal with everything that it was being asked to, and nothing to do with my thoughts or feelings towards the people involved. I think perhaps people look at a meltdown or shutdown and interpret it as an emotion, and an emotion that is felt towards them because they are there or they were involved in the escalation of distress.

I rarely feel an actual emotion in these states: what I am feeling is overwhelm. Brain exploding because more is being asked of it than it can provide in that moment. It doesn't even have space for an emotion or an opinion on things - all that is in there is "too much" or "help" or "I can't cope" if I had to try and translate it into something.

I kept thanking them and apologising. I didn't know whether they knew I wasn't upset with them but just couldn't compute the change quickly enough. I didn't know if they knew that I knew they wanted to help.

So my communication was not understood by the people with me, and at times I did not understand theirs. An interaction between people of the same neurotype would likely have resulted in less confusion, a quicker de-escalation and less concern afterwards. 

Not a New Year post...

I feel compelled to rebel against the annual tide of introspection and personal reinvention.

Actually, as ever, I have been reflecting for quite a few weeks and after much ignoring of the prompt of the blog itch I am finally sitting down to scratch it. Nice image for you there. And also, this post won't go live for a couple of weeks so really, the precise day it happens to be today is pretty irrelevant as the sentiments are weeks old and the post weeks early!

This time last year. 

I took three photos on 31st December 2019. The first one reminds me that it was a Tuesday. It was taken at 7.11am. It tells me I was distressed. It tells me I was trying hard to use positive coping strategies. I don't remember on that occasion whether I won or not, but I'm glad I was trying. It tells me I had friends who cared - my projection light was a Christmas present from someone with a very big heart. The other two photos tell me that I went outside later that morning and I was present enough in the moment to stop, appreciate it, and take two photos of a view that I grew so closely connected to as I befriended it daily through the changing seasons. It brought me peace and solace in times of turmoil.

This time last year Tuesdays were the worst day of the week, baked potatoes were described by estimating the age of the baby's head they equalled, the word chain had a meaning incomprehensible to 99% of the population and you might find a yoghurt just about anywhere. One day you're helping someone who's so scared they don't know how to live, the next they're under your desk with you helping you through your own distress at the wrongness of the world. And then you're all in hysterics because someone burst a sensory ball in group therapy. On Christmas Day I visited my family for a few hours and then returned to my new 24/7 job.

2020 was a funny old year. Funny for everyone, but I like to think it was especially funny for me. The first four and a half months of it I spent in a funny old place. A place I hated and loved. A place where I felt safe and terrified. A place where I learnt to be me and learnt how to live. I formed deep friendships with people I love dearly and found understanding and acceptance (largely). I faced my biggest fears and did things I thought impossible. There were days of horror and days of hope. Many were a pretty strong mixture of the two.

Along came our friend covid and my learning to re-enter the real world had to be put on hold as we locked our doors and were confined to the company of our fellow patients and staff. Weeks on end without so much as setting eyes on my husband. Yet more people to hug than anyone else in the country, so we remembered to be grateful where we could. 

In May I landed back in the world, disorientated, overwhelmed, sad and scared. Surrounded by fabulous Peggy husbands (OK, just the one), Peggy friends, Peggy family and Professional Peggies, I survived those first few months. I grew plants, I said goodbye to my Grandad, I celebrated a birthday and an anniversary. I found joy and balance in returning part-time to work, moving my body, being outside (the fields and river of our village took the place of the tended gardens in bring me peace) and reconnecting with the bits of my old life that I wanted back. I practised helping people to help me. I fought daily with the things my brain told me, losing a little, winning a little, sometimes more scared of recovery, sometimes more scared of not recovering. I scared myself again then determined to work harder.

And then, out walking on Sunday 15th November, six months to the day since my discharge, I began to wonder. The next morning my thoughts were confirmed. So now...

This year.

This year there is a little person, just four centimetres long, growing inside me. Not everything has changed - thoughts, emotions and urges require dealing with throughout every day, just like last year. And my friends, family and support team are still rallying round me, if in different proportions and at different distances.

But now I am living in my own house with my own Mr Peggy, going to my job that I love. I can get up at whatever time I want (or need!), I can go where I want to when I want to, I have skills and tools that I can use to help me navigate life in a world designed for people with brains different from mine. I still have to manage distress, memories, meltdowns and shutdowns, but I live my life in a generally more manageable way.

I have no need to reinvent myself because it's a new year. I fully intend on trying my best to continue what I have been doing. Living in a way that I can sustain (mask less, only take on a manageable amount, ask for help when I need it etc), using my support networks and getting back on the bandwagon more quickly and staying on it for longer every time. Trying to be kind to myself when I am not coping and make the most of it when I am.

I am thankful for.

In the funny old year there has been much darkness and difficulty and pain. But there has also been a tremendous amount that I am thankful for.

I have friends brought to their knees by this pandemic and friends who have had a wonderful year with much to be thankful for. I think especially of friends gained over the last year who fight so hard every day, some currently anticipating admission and the long slog ahead, some nearing discharge, and many at home, riding the waves and working for freedom and life. It's not a club you'd choose to sign up for, but I am immeasurably grateful to have met the people I have done over the last 14 months.

I am thankful that I am well enough to be at home and living my life, truly participating in it rather than enduring it as it flows away.

I am thankful that I am well enough to be growing a baby. We didn't know if or when this would be possible.

I am thankful for the way pregnancy makes me love Mr Peggy more every day, whom I can't wait to see being a Daddy. 

I am thankful for the way he looks after me when I'm not feeling well, knows my mind more and more every day and shows me in perfect ways how much he loves me.

I am thankful now to be able to accept and appreciate his help - a year ago I would have been very troubled by needing him to do things for me! 

I am thankful to be in a job that I love, with colleagues I love, and to have been able to work all the way through this pandemic - the routine is enormously helpful for me.

I am thankful for my family and friends near and far. You bring me so much joy and support and you are a big important part of my life.

I am thankful for the professional help I have received, inpatient and outpatient. I realise how rare it is to get all the help you need for as long as you need it. I don't think I know anyone else who has this. I truly believe it makes the difference between sustained healing and just about managing or ending up back in cycles of illness. Just observing how so many of my friends have been failed in different ways brings a lot of pain, and I want to make it clear that it is sadly uncommon to be able to get all the help you need from the NHS. I also know that I can be sad and angry about this AND grateful that I have had what I have needed. Previously I would have felt guilty and that I should not be getting what I do get, but now I know that this doesn't have to be how it works. I can be sad for others and thankful for myself.

I am thankful to live in a place where countryside walks are within five minutes from my house on foot, and where I drive through countryside wherever I am going.

I am thankful to be able to walk and drive and dance.

I am thankful to have a house we can afford (just about!), that we can heat, that has space for a baby.

I am thankful to have been given life and hope.

Care

The other day I read this fantastic article about nurturing nose and face wiping. Oooh, it really got me thinking. If you ever in the run of your day find yourself wiping someone else's nose, you should read this article. If you don't, you could read it anyway - it's never a bad thing to broaden our awareness of different life experiences, and you never know when you might find yourself in a situation where the insight and understanding you gain could be useful. An aging parent or friend, a grandchild, niece or nephew, or even your own child, spouse, brother or sister can find themselves in need of physical care at any time, long term or temporarily.

The article is full of quick, easy practical bullet points to consider, yet it relays the true essence of care with brief explanations of why each aspect is important.

It is all about increasing the wellbeing of the person being cared for by supporting their understanding and anticipation of what is happening, valuing their personal preferences (eg. amount of pressure, type of movement, smells or lack of them) and autonomy, promoting their dignity, privacy, comfort and physical wellbeing. 

I keep wanting to copy and paste bits but then it's all so good I wouldn't want to miss any out! So just go and read it!

But it also got me reflecting more widely on care. Everybody will at some point in their life find themselves in a position of caring, whether this be in employment or personal life. We generally find ourselves there because we do care for that person. Because we want to make a difference and support somebody's wellbeing in whatever ways we can. 

We are also almost certain to require care at some point. We all required it as babies and children and to lesser or greater extents will be cared for throughout our lives by those closest to us or by professionals.

Can you think of any moments when someone's care has really made a difference? It's easy to pay attention to times when we have been failed or let down, but what was it in the times when you felt cared for that made the difference?

One moment I will forever remember is when I opened my eyes a slit as a particularly bad panic attack was beginning to ease, to see the support worker catching my streaming snot and saliva with a big wad of tissue. That image sticks with me. No disgust, no revulsion, no big deal, no expecting to be thanked or that I was even aware of that particular action. Just two people being with me, facilitating me to recover in the best way for me: waiting until I was ready, using minimal language, taking care of my physical needs when I couldn't and wasn't aware of them, maintaining my dignity as far as possible.

I'd love to hear of any moments of care that have stuck with you, big or tiny.

How to tell the Story

 As I finished writing the previous post and discussed it with others, I started thinking about the techniques I use to try and overcome the various obstacles to communication that I listed. They don't address all of the barriers and they don't always work, but maybe some of my sneaky ways of cheating the system might help someone else with similar difficulties, or might be tweakable for someone else, or helpful to somebody trying to support communication for people with brains like mine.

I don't know that (or what) you want to know/it doesn't occur to me that it's something people would want to know/I've already told somebody/I can't think of any things to say.  These are tricky ones to get around because it's hard to know what you don't know. In some contexts it helps if people ask fairly specific questions (eg. in appointments), although this can lead to me not saying anything that isn't specifically asked so beware! In other contexts questions make it even harder for me to talk (eg. "are you OK?"/"how was your day?" General statements about the sort of things people want to know can be helpful eg. "please tell me if/when you feel bad enough that you use the crisis line" or "I like it when you tell me about specific things that happen in your day". These don't put me on the spot to perform immediately, but I can use them in future when I want/need to communicate but don't know what to say/whether someone will want to hear.

It doesn't occur to me that other people might not already know whatever it is that's in my head/ I forget that I could say things just because I want to say them/I struggle to say things purely because I want somebody to know. Sometimes I can CBT myself a bit in these situations and/or think back to the frequent conversations with my numerous professionals and peers and remind myself that people don't know what's in my head unless I tell them and there is nothing remarkable about saying things, even if people aren't interested or already know them.

I don't want attention. Telling people one to one and by a non-invasive communication message like text or direct message can help with this. Sometimes dropping things unexpectedly into unrelated conversation works for me though it probably isn't great for the other person! I may also try and change the subject again very quickly afterwards to deflect attention away.

I don't know how to say it. I find processing by writing particularly useful: brain dumps, blogging or just scribbling down whatever I am thinking or is bothering me. Other people use drawing and various different tools to help them figure out what's in their head and how to translate it into something other people might understand. If I don't have the time to do this on the spot I might be able to use a flashcard - I have a cunning one that reads "there's something I need you to know" - to get the ball rolling and help me avoid the distress of feeling trapped and despairing. We might then agree that once I've figured it out a bit if I can't at the time, I will email an explanation or a copy of my brain dump to discuss when we next speak.

Demand Avoidance/Exposure Anxiety/I don't want you to know.

• Writing a text message about my day or my emotional state and sending it before I get home so I don't have to say it. This is less "directly-confrontational" and sometimes manageable. A bit like writing this blog, I can pretend it's just writing and that I'm not actually telling anything to any people. Pressing send can be difficult so it's best if I do it really quickly without thinking about it and then move quickly on to something else.
• Getting in there first before anyone can ask me a question. Sometimes I can't do this though, and other times when I do it tips me over into some weird manic over-talky state which is like an elaborate mask (I can't communicate as myself so I'm almost acting a part and distancing myself inwardly from the vulnerability/anxiety that communicating brings. This is very Exposure Anxiety, if you are at all familiar with Donna Williams/Polly Samuel). So I'm still not sure if it's a good cheat or a bad one, because it does the job of communicating what I need/want to communicate, but leaves me exhausted when I come down from it.
• Saying the thing in some entirely unrelated context where I wasn't planning to say it. This takes my brain by surprise so it doesn't have a chance to say "no" and stop me from communicating. It also gives me a feeling of safety because I have taken the other person off guard with it so I feel in control, which protects me slightly from the vulnerability of exposing the insides. Again both routes around Exposure Anxiety. I hate unpredictability in others but I like to maintain a sense of my own unpredictability... Perhaps because it keeps me freer from expectations that I am afraid I won't meet (ie demands, think PDA traits).

What do you do to help you tell the story? What do you find helpful or unhelpful as someone wanting to hear the story? Please let me know - this is very much an ongoing work for me so any ideas are helpful!

None of the Story: Why didn't you tell me?

I've been asked to do a follow-on from my previous post on telling the whole story. As I touched on in that post, I am often prone to the exact opposite and telling nothing at all. Why?

I don't know that (or what) you want to know. Unless I am specifically told otherwise (eg. by being asked specific questions or instructed to inform a if x happens), I assume that what I might say will not be of interest.

It doesn't occur to me that it's something people would want to know. The previous point could be specific to person - I might say things on a certain topic to one person because they have specifically told me they are interested. But I will not extend this to the general population, because I have no information that anybody other than the person who said "please tell me" is interested. If nobody happens to have told me it's a topic I should tell people about, then I may just not tell anybody about it! I don't want to bore people and I don't want to get conversation wrong.

I don't want attention. Attention is a kind of demand to perform, which brings a risk of failure to which I am very sensitive. Speaking in a group of people, no thank you. Unless I am there for the actual purpose of sharing information on something I am well-informed about, but that is different - then I know what people want to know and I'm not relying on my personal performance; rather the factual content of what I am delivering. I have too many experiences of getting conversation wrong to want to invite attention.

I don't want you to know. I'm actually pretty open when people want to understand things, so it's relatively rare that this will be the reason I'm not telling someone something. If it is, it's probably because the thing makes me feel very vulnerable and I'm not ready to share it with them yet. Perhaps I fear I will be judged or misunderstood, or perhaps I am still judging myself about the thing and feeling intense shame. Sometimes I can also feel the need to be in control of information, especially if it is information that is valuable to me and I fear it losing its essence or it being mistreated if I let it get away from me. But more often than either of these, when I think I don't want you to know, it is actually exposure anxiety or demand avoidance being triggered.

Demand Avoidance. I wouldn't say I fit the whole profile of PDA (Pathological Demand Avoidance), but I certainly experience some of its traits at times. An anxiety-driven need for control and drive to avoid everyday demands can strike at varying intervals or in varying contexts, making it difficult to do what is expected of me (by myself or others). For example, for as long as I can remember, way back in childhood, being asked how my day was has made me inexplicably feel angry. This has never changed. Even if I want to, I feel utterly unable to give that information when it is requested of me. I can't express the anger that rises when the question is asked, because it is not reasonable. I feel bad because it seems like I don't want to interact with people and am shut off from them. Basically asking that question is a recipe for disaster! Sometimes I want to tell the person about my day, but if they ask, I can't. Sometimes I want to be able to do it so much that I am rehearsing on the way home what I will tell them, telling myself it will be OK, but I make it into such a demand of myself that I still can't. Or they ask before I have said it that ruins everything. If nobody asks and I don't plan it, sometimes it can slip out sneakily later and fool my brain. Because I didn't have to, I could. 

Exposure Anxiety. Perhaps even more pertinent than demand avoidance for me is exposure anxiety. I wrote a little on this here. It's basically a sensitivity to the awareness of your own existence. When attention is drawn to the fact that I am here, existing, I can find it hard to bear, resorting to avoidance, diversion or eventually retaliation responses. Things that may trigger that sensitivity include making decisions, making changes that might betray a personal choice, realising people are listening to you, your name being used, having a noticeable effect on the world, and many more. So obviously anything that invites attention, such as just talking can sometimes be difficult, never mind talking about something that matters to me and might betray the "me" that wants to stay safe in anonymity.

It doesn't occur to me that other people might not already know whatever it is that's in my head. I can't count the number of times I sat in my psychiatrist's office and had to be reminded that nobody can know what is in my head if I don't tell them... I mean logically I know that, but functionally I forget it quite often. Because things seem so obvious to me, I can't see how someone else could possibly not see them. I mean, I blinked for a split second longer than usual, how can they not know that I'm overwhelmed by emotions or memories and trying not to melt down?! I know that I'm worried about x, y, and z, they know about x, y, and z so they must know how worried I am. I have seen two pieces of information and come to a conclusion, so it would only be natural that everyone else has come to the same one, right?! I'm not quite sure how I manage to maintain this belief that I'm the same as everyone else when I know darned well I definitely am not!! I think I am getting better at this one in recent months though - certainly working hard on saying how I feel and what I need people to know (this is really hard, see exposure anxiety below) and checking whether I'm on the same page as other people rather than assuming.

I've already told somebody. This was a big one in the past and still pops up from time to time. Once I've told one person, I forget that not everybody knows. In my head, I have done "telling," I am past the "nobody knows what's in your head" stage, and so "knowing" is now the status quo. Except that of course "knowing" is only the status quo for the person I've told. If they remember me telling them. You can see the flaws in this brain glitch!

I forget that I could say things just because I want to say them. It's not only worth saying things that are so interesting somebody asked about them. There are many reasons someone might not ask,* but it doesn't necessarily mean they don't want to hear, and in the grand scheme of things, it usually wouldn't actually matter even if I said it and they weren't interested. But sometimes I forget all this!

*They might not know what I could tell them, so they don't ask. They might not want to be nosy. Many reasons, all of which affect me very strongly on the other side - I rarely ask questions because it doesn't occur to me that I can - I don't want to pry and I assume that people would tell me if they wanted me to know. I realise the complete incongruity of my approaches to sharing and receiving information!

I can't think of any things to say. Alternatively, I genuinely have nothing to say. This is my general state of being in everyday conversation. How do people think of stuff to say all the time?! I need a topic, specific pointers, questions, a thing to talk about. Even then I can struggle sometimes. 

I struggle to say things purely because I want somebody to know. This is slightly different from saying things because I want to say them - it goes slightly deeper. It is hard for me to overcome the feeling that if I am saying something purely to help myself, uninvited by somebody else and to benefit myself in some way rather than at random, then I am greedy for taking up time and space and effectively asking something of them (listening). This ties in a bit with exposure anxiety too.

I don't know how to say it. I know there is a thing that I want to say, but I don't know the words to make somebody else understand it. It can seem such a monumental task to work out how to say it that I don't even know where to start. If it's a precious thing, saying it wrong is worse than not saying it at all. Being misunderstood brings us full circle to the previous post and the importance of truth and accuracy. I find wrongness hard to tolerate, and if it is wrongness in someone's perception of my inner life, it is devastating. Sometimes I can't quite even work out what it is that I want to say or put it into words for myself. I may have to do a whole mind map to figure it out, or write for an hour or two. So it's no wonder really that things don't always pop out in conversation!

Gosh, twelve reasons I haven't told you! No wonder I get told off for not being communicative. And then start telling someone else the Whole Story and get told off for that. So start not telling the story again... And to think that I once questioned whether the whole "social communication" aspect of autism really applied to me!

Do tell me if you can think of any more reasons, or if you have great tips for working around them. Hm, maybe I should do another follow-on about methods I use to try and get past these obstacles...

Having just spoken to Mr Peggy I have realised that this post is a perfect illustration of telling the Whole Story and am laughing a lot that I am doing the very thing I just wrote about. And I realised that I could have answered with much more succinctness (definitely a word) his question about how the truth/everything being known being important interplays with telling nothing at other times: it's binary. Like so much in an autism brain. I'm either telling, or not telling. If I'm telling, you'll have to deal with the Whole Story; if I'm not, you'll just be guessing. 

I even worked out the parameters I would ideally work in for what gets told: things that people need to know, things they want to know, and things I want them to know. Trouble is, I still have very few ways of knowing how to allocate Brain Things into those categories! Ideas on a postcard again please!

The Whole Story: Completeness - where there is inaccuracy, there is chaos

I just heard it's an autistic thing.

Having to tell the whole story and not miss anything out. Because we don't know what's relevant. We don't want to miss things out in case we are later chastised for not telling anyone, when we were just trying not to overdo it and take up too much time and lose people in a sea of information. We didn't know anyone wanted to know that particular bit of information; they didn't ask for it. We don't know which bits will and won't be useful to someone else so we need to put it all in.

Or else we have learnt that the "whole story" approach is not acceptable (attention-seeking, boring, demanding, over the top, time-consuming, pedantic, annoying) and so we rely on people asking the right questions, and if they don't the issue never gets discovered, never mind solved. 

We can swing wildly between these extremes dependent on context, how recently we have been bitten by one or other approach (making us more likely to err on the side of the one that hasn't recently made a problem for us), general mood and who knows how many other factors. I tend to assume if somebody hasn't asked, they don't want to know. It is hard for me to know what they would want to know if I don't have specific instructions.

Also pertinent is the issue of things needing to be complete and correct in general. Unfinished tasks are torture. Open but unfinished packets of things make my brain messy. 

And truth. Autistic people tend to be very concerned about truth. If things aren't true and correct the world starts falling apart, because what can I depend on if something I thought was true was not dependable - how do I know what else is or isn't? Where there is inaccuracy, there is chaos. We tend to find lying difficult (or we just can't understand why people would do it!). Sometimes if the story isn't complete, it doesn't feel true because all the details aren't there. I haven't relayed it faithfully and may have missed some of the essence, giving the listened a false idea of what happened. To avoid misunderstandings, people must know Everything.

Memories

When I'm driving along or walking and autumn washes over me, I feel all scrunchy, and not in a good way.

When I first came out of hospital I was constantly assailed by completely overwhelming and uninvited memories. The slightest thing would trigger them and the emotions would take over me. It was exhausting, upsetting, and draining.

They come in ebbs and flows now; weeks where I'm much more here and now and weeks where I am being taken back in time throughout every day. New triggers pop up that I haven't met before and I'm back at day one, struggling to see the road through my tears as I remember somebody saying something a certain way, or filled with anxiety as I simply realise that something I am going to have to do may trigger memories. 

I can cope with the little ones that pop up a few times a day, snapshots of a time that seems so far away now, the odd turning over of the stomach. The unexpected ones and the new ones and the ones where the unidentified emotions just take you over or you've been dreaming about it all night and the feeling won't leave you are harder to deal with. 

It was a completely separate life. It doesn't fit into or link with my life outside. Nobody in my daily life has the same points of reference. That thing where people reminisce when something reminds them of a previous experience doesn't work, because none of my experiences from the last year are common to the people I spend my days with. You can't say "ah, remember that time when...?" If you want to share what's in your head (which is a big way most people communicate and build relationships, and occasionally it occurs to me to do so even though I am uncomfortable inviting attention by talking at the best of times, especially talking about myself) you have to tell them the whole story and they are still unlikely to really understand. It's not relatable, you'd just be the weirdo that's constantly talking about when they were in the loony bin... I also feel like that's somehow taboo, that I shouldn't talk about that time and that place in everyday "savoury" conversation, though I know this is probably just my own judgment. Over time I will build more recent experiences that do relate to my daily life and daily interactions and normal things that aren't about bonkers brains, but it seems that for the minute most of my recent frame of reference lies in that realm.

I don't know if I want to remember or not. It hurts, which is off-putting. Am I feeling like I am there again? Am I in the same emotional state as I was in at the time? Or am I having emotions about what it was like at the time? Do I feel like I want to be there again? Is my brain trying to experience it again because I have not finished processing overwhelming experiences? If I write about it in as much detail as possible will it help me to process? Sometimes I feel as though I need to go through everything in the minutest of detail with somebody safe and helpful, examining it all - what happened and how I felt about it and how I feel about it now. Being careful not to miss anything, until I am satisfied I have dealt with it all. I feel like the memories might become normal memories then with a normal level of emotion attached, just a part of the story.

I think not being able to share them stops me from integrating these memories into my story. They don't belong anywhere; they are in a separate box, largely to be got out only with my fellow loonies, then put back in again as I go back to real life. Except that my brain is telling me that they are important to me by refusing to let them stay in the box. They run riot because they need to be attended to, seen, heard, understood, given a place in my story and then somehow to become as unremarkable as everything else that happens. Maybe that's why I'm writing so much about that time at the moment. I'm sorry if it's boring or repetitive or weird, but as always, I write this for me, not for anyone else. When I can't talk about it (and it's isolating too, not being able to relate to others about a huge amount of what your brain is doing), I can see if writing helps a bit.

*DISCLAIMER* I use loony and bonkers as terms of endearment and humorous way of describing myself and my friends and celebrating our positive differences. We are all most excellent people, very capable and responsible and intelligent and interesting and, you guessed it, normal people (whatever that is!). Sometimes our brains do things that other people find unusual or that cause us problems if we or our culture are not equipped to deal with them. But that doesn't take away anything from our personalities and normal human qualities. Please don't think I am in any way demeaning people with quirky brains (yay to neurodiversity!)!