More Letters

Today is a wading-through-metaphorical-treacle day. A zero executive function day. A day where I keep finding myself motionless, staring at the items on the supermarket shelves and the world seems distant. 

Only the items on the list are bought, and the ones that left any room for interpretation are left unbought, because I don't have the capacity to make decisions about what to buy. The shopping has been brought into the house, but not yet put away because I just don't have the spoons. Having dealt with the full-change-of-clothes nappy incident at the beginning of the shopping trip, we also had to make another toilet visit before home time to deal with my anxiety digestion. 

It's the end of what I'm affectionately calling Stressy Season - the longest of my calendar-based trauma triggers - which spans six weeks through September and October. This year I finally have a name for all these things that happen to my body and brain when it is reminded of certain past events.

PTSD is not just the curled-in-a-ball-on-the-floor-crying-rocking-unable-to-speak-occasionally-with-screams-coming-out-or-hurting-of-self panic attack after the fire alarm. It's not being able to concentrate on what you're doing, it's dread when you look out of the window, it's feeling irritable at the slightest thing, it's going to lengths to avoid places and things that make you remember, it's feeling sick all the time and wild bowels, and so much more.

Dem autumn leaves are well threatening...

Autistic people are more likely to get PTSD and are less likely to have it identified correctly. We are both more likely to end up in potentially traumatic situations and more likely to be traumatised by experiences not traditionally seen as traumatic. Because of this and our neurological differences we are less likely to see and be understood by professionals who deal with PTSD and thus also less likely to receive helpful support (which again may or may not differ from traditional treatment). I'm thankful that a year after one misdiagnosis I was able to access a second opinion, and that this person understood and was able to explain to me all of these things about autistic processing and so forth, helping me to understand and accept that this is a box that applies to me despite "nothing traumatic having happened" (I did tell the first person nothing traumatic had happened, so I guess it's no wonder they thought nothing traumatic had happened...). I'm not just making a fuss over nothing; my brain is trying hard to do a job.

The lady in the supermarket who commented "Don't worry, I'm amazed how well you're managing it all" when I apologised for forgetting to put the little divider at the end of my shopping on the conveyor belt (another sign my brain is not doing its job) had no idea what "it all" really was. To be honest, a baby in a sling, who was by that point sleeping, is no trouble at all, unless maybe she had clocked the previous blowout scene. I didn't even have Pre-School Peggy with me. "It all" for me this morning was PTSD and the fact that I had to collect my brain repeatedly on my circuit of the shop and coax it into doing enough of its job to get us by. Everybody has an "it all" every day, and maybe that lady realised. 

Be kind, you don't know what "it all" is going on for those annoying people you meet.

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!)!

Safe

Writing my post about community, I mentioned that I felt safe in the community on the ward. I nearly went off on a tangent about "safe" and decided it warranted a separate post.

Most definitions of safe state something to do with being protected from or not exposed to danger or risk; not likely to be harmed or lost. I looked that up after I wrote the following, and it fits right in! Danger, to the brain, includes not only injury and illness to the body but rejection by others and not getting needs met. Being despised, ridiculed or feared (all experiences of I guess most autistic people) probably come under that heading too.

Maslow's Heirarchy of Needs names safety
as a basic need required before we can access
the benefits of engagement and learning

I have had many conversations with people who live with mental health difficulties about safe people and safe places. In the general hospital there were some people who were safe and others who weren't. With the safe ones I felt empowered where I was otherwise scared and immobilised. People talk about whether they feel safe (and thus able to work to their fullest potential) with their colleagues. It seems to be a concept that we each think we have made up and yet we all understand. So I thought I'd see if I could figure out what I actually mean when I say I feel safe somewhere or with someone. And how could I say I felt "safe" in an environment when I had daily threat responses there? If safety allows thriving, what characteristics do I want to promote in my communities and in myself, to help me to feel safe wherever I go?

When I felt that I was not going to be judged (or if I were, there were sufficient people around who understood me to counter that message of misjudgment), I was understood, I was protected, and people were kind, then I felt safe. Later on, I found that I was valued. Now, this was by no means a perfect environment and there were definitely times where these things didn't happen, and I know that not all other people shared my experience, but these are the aspects that I think contribute to me feeling safe in any context.

I think a safe person or a safe environment is characterised by:

Non-judgment. I will not be judged or rejected for my needs, my mistakes, my character, my interests, my self-expression or anything that is intrinsically me. Some actions may not be acceptable but my character will not be judged by those around me.

Understanding. My needs are understood. My communication is understood. The people around me know me - they understand what is likely to cause a problem and why, and how to help. They also understand my abilities and give me independence and responsibility in the many areas where that is appropriate.

Protection. There is protection from danger, be this danger from my own actions or thoughts, or from those of others. I am helped to learn to how and when to protect myself. Perhaps a part of this is also boundaries. Although constricting, boundaries are there to keep us safe and every community has them. The clearer they are, the safer we feel, because we understand what can and can't happen, and the consequences if boundaries are broken. When this system fails, we stop feeling safe.

Kindness. I am treated with compassion. This encompasses most of the other points but I think it is so important it needs to be listed separately. When people are kind, the people around them feel safe. See my older post on Kindness here.

Freedom from social expectations (other than boundaries). I added this one afterwards because I was thinking about how my presence or input needs to be optional for me to feel safe. If I'm under pressure from others or myself to be present, the safe feeling goes. If I need to provide something (interaction, performing tasks, making decisions, just generally engaging to a certain level) I begin to feel under threat in case I cannot deliver. On the unit I was completely at liberty (outside structured sessions) to choose if and when I spent time in communal areas, and when I was there, whether I chose to engage with others and to what extent. Nobody expected anything from me and nobody would be offended or go without their needs being met if I were not there or not speaking. When I am truly free from social expectations I am at my best socially because I can do what is best in the moment.

... and the bonus, value and belonging. In a place that is good as well as safe, I am valued. My differences are not only tolerated but appreciated. I don't feel that it is a difficulty to accommodate my needs, but a pleasure because inclusion will also help others. I am not only not a problem, but I am an asset. People are fond of me partly because of my idiosyncrasies, not in a patronising way but because they genuinely see something they like in my quirks. My peculiar perspective is helpful in seeing things differently. I am recognised for the positive additions I bring to a community or relationship instead of my differences showing how I don't belong.

Is this what safety means to you? Have I missed anything out? As I have read this through a couple of times and added bits in I have noted increasingly that the attitudes in the people around us that foster safety are also attitudes that we can cultivate towards ourselves. If I can apply these lenses to the way I look at myself, I will increasingly carry my own sense of safety with me and perhaps become less deeply affected by the responses I find in different surroundings.

Edited to add, after this post from a friend, that feeling safe is as important as being safe. The brain and body respond the same way whether a threat is perceived or actual. And feeling safe then allows us to branch out beyond our safe place or take calculated risks knowing that we can return to safety.

Community, masking and belonging

Community has been pottering around in my mind recently. And then I wrote this and the first half ended up being about masking, so I'm changing the title.

Not this kind of mask!

I wrote almost a year ago about the revelation that I actually like being with people when I am sufficiently regulated. Although I have had friends since I was about 10, I generally had between one and three at any time and didn't feel comfortable socialising with them in an unstructured way or out of the context in which I got to know them (often interest-based or non-rejection-based) until I was an adult. I considered my friends as out of the ordinary in that the enjoyment of being with them outweighed the anxiety (which was decreased by their acceptance or appreciation of my quirks). Until I was an adult I was certainly still performing or "masking" when with my friends, though less than with other people. Even though as an adult and especially more so since being identified as autistic I have become more accepting of my natural self I think I have almost always masked: it was so much of a necessary survival strategy when I was younger that it became automatic and hard to identify how I would behave if I were behaving entirely naturally. For information on masking and its dangers, see here or here or do an internet search.

As I have become more noisy about being autistic and less hide-y, I have begun to lose the mask. Most of this work has been done over the last year. 

A perfect storm of conditions came together - I hadn't gone there to try and make relationships so I didn't have any expectations of myself or any pressure, I'd never met any of these people before so they wouldn't think it odd if I was different from how I was in the past, I felt safe, I was fairly well convinced I was not going to be judged (by and large anyway, and if I were there would be sufficient people around to give me the counter-reaction), my "behaviour" would not be out of place or unusual (OK, it was sometimes unusual, but it was very much accepted and even valued and I learnt that it was OK or even good for some of my oddities to become parts of my identity), and I was so much reduced to nothing as a person that I didn't have the will or the energy to hide anything. It was a chance to find out who I am when I don't pretend, and a bit like a reset button on my life. Who am I when I stop behaving how I think I ought to behave because I want people's respect?

This, I think, is the most I have ever been part of a community, which is sad, and maybe one reason why I was so sad when I left. In life I have been part of many communities. In some I have been more myself and in others have masked a lot, but never have I been able to simply be until this point. On second thoughts, perhaps it's not all sad. Perhaps it's happy that finally all the pieces came together at once to allow me to discover that there is a possibility that I can be me, and I can be me safely and happily with other people. And that the time when I didn't mask was when I first found belonging - it was my true self that belonged, not some self that I thought I was meant to be. There were things in my past communities that could have been more inclusive and helped me to belong, and there were things in me that needed to be in place to get the most out of the opportunity (look, both of these things can be true!! If you read my earlier post...). The right people, the right environment and the right point in my life experience came together to give me a kick-start on finding myself, accepting myself and educating others about myself.

Now I have to learn how to translate that into the real world. The real world is not made up of only people who understand neurodiversity and are full of compassion. But the more I carry on being me, the more I find out just how many of those people there are. And the more I carry on being me, the more people will become compassionate understanders of neurodiversity as they find out that people like me aren't scary or dangerous or incapable, to be despised or wary of or changed or hidden away. 

I have often been scared of communities in the past because I have been either on the peripheries of them or an outcast. Sometimes I have sort-of-belonged-a-bit but never felt comfortable except with a couple of people. Communities have never been somewhere I can relax. They have been fraught with danger and vulnerability, so many ways to get it wrong and find out once again that you don't belong. So I have preferred to stay with my one or two people outside the circle where we're happy. And I'm still happy to be there, but I've found out that there are circles that I do belong in too. If I am naturally myself the circles start to find me. My work circle is becoming a place of belonging - there have been pockets of belonging there since day one, but I restricted that circle by hiding bits of me. As I start to be myself, instead of my circle shrinking and my being cast out, my circle is growing. I am becoming part of the family. I am valued and cared for and I am OK with that. Actually, it turns out that I like it. 

If I don't accept myself I don't give others the option of accepting me. They may choose not to, and there are certainly still those around who don't (the security guard outside the supermarket when I shutdowned yesterday... luckily he wasn't nasty, just annoying, and the Supermarket Lady and Hair-Changing Passing-By Work Peggy were very understanding and helpful), but if I judge what I think they'll do without even giving them a chance, then although I may be protecting myself, I may be missing out too.

Will I be brave enough to offer this opportunity in some of my other communities I wonder, and will they take it up? And will I find anywhere I belong quite as naturally as with my fellow loonies?!

Now I have discovered that being part of a community is something for me too. It may be scary and involve risk and investment, but a safe community for me is a thing that can exist and a place I can thrive and belong and have all those things that people think autistic people don't want or can't have. Only because we've grown up in a society where we don't understand most people and most people don't understand us do we all have those beliefs. Autistic people do benefit from belonging, and we can belong safely.

Picture from https://artmiabo.blogspot.com/2015/08/colours-in-circle-abstract-art-by-miabo.html

What is this post even about?

I'm trying to write a post that feels like it needs to be written, but nothing I write feels quite right. Usually when I don't quite know what I want to write, I start typing and something forms itself that seems to get whatever I needed to get out of my head out of my head. As it were.

But I've tried this one several times and it's still not coming together. I want to write about how the events of a year ago are affecting me now, about how life is different and how I feel about it all and what the brain does and what still affects me and how I am coping with returning to all the previous bits of my life that went on hold. But I can't seem to gather my thoughts or pin them down. I can't find the nub of what causes me trouble and why. I can't identify the things that are happening in my brain or make sense of them. 

Sometimes I'm overwhelmed; sometimes it's like it switches off and none of it seems to matter, but this is accompanied by a sense of foreboding that it hasn't gone away - it's just hiding, ready to pounce when I'm not expecting it. Sometimes I'm too weary to care, but I know that is temporary too. I need to find a way to unravel everything that has happened, to acquaint myself properly with facts and feelings and integrate it all into my story so it stops jumping out at me, incessantly demanding attention, sending me alerts and notifications and generally causing trouble.

Ideas on a postcard please!

A different path

A year ago I was a good way along a treacherous path, with the danger increasing daily. I was terrified on that path in that dark place but all other routes had long since vanished beyond my ever-diminishing sight. Soon the fear faded into numbness and the darkness seemed normal, the path familiar. Awareness shrank and life became a one-track survival challenge from one moment to the next. 

And in another way I was blissfully unaware of the depth of the danger I was in. I knew I didn't like it and I just wanted it to be over, but to be honest, judging by other people's accounts I still don't quite accept how bad things really got. 

A year later. So many wonderful wonderful people have given me so very much. The help I received when I continued (and continue) to make poor choices feels too much; undeserved. I am so grateful to each person for each moment of care - I can't put into words what those moments are and how precious they are and how each one becomes a stone in the new path I'm trying to build that leads out of this place.

A year later. Why do I want so badly to run right back to the darkest place? Why does the thing that brings me only danger and that wants to steal my life feel like a place of safety? Why am I constantly drawn there, wanting to visit, to stay a while, hm maybe I'd like to live here.

Everything in me compels me to be there. I need to be there. There isn't another choice - that is where I should be. Yet I have to walk away. Each step is fear and horror, where it should be hope, joy and freedom. I've had so much support, so much sense, so much time, I'm sorry I can't see what you all see, but I hope the fact that I'm still trying to walk away shows that I trust you. That each time I find myself heading back towards the darkness I ask for help, I turn around and I try again despite everything in me screaming at me that I'm destroying myself and leaving behind everything good and safe. I hope that shows the value I place in the people who help me. I'm trying to trust you that this path I'm building will be worth the pain. 

The Oldways

 If I wasn't already known as the village crazy lady then walking barefoot down the street stroking my hand with the fronds of a fabulous piece of reed should have done it!

This walk was long overdue and as soon as I left the house my feet let me know they wanted to be on the ground, not the flip flops I had put them in. I ignored them for the duration of the appointment I had gone out for, but as soon as it was over I had to let them be free. 

My feet found so many wonderful treats and treasures for me and led me to where I needed to be. 

Long grass, short grass, cool grass, warm grass. Hot hard tarmac. Smooth paving. Earth baked dry and earth with a spring. Soft dirt, spiky stones. Bark that wakes up each millimetre of forgotten sole.

Insects buzzing, breeze in the trees, pigeons beating the air with their wings. Doves cooing, tiny popping as water evaporates under the sun from the drying stream, and the odd drip from the grasses growing into the water. A distant pheasant. Butterflies dancing. Songbirds chattering. And me, finally still. Sitting, silent. Breeze stroking my skin in the warm shadow. Bare feet, breathing the life around me, being part of this place in this moment.

The beauty of a reasonable adjustment

Oh bless the beautiful little cotton socks of my GP surgery (and the invention of the SHOUT service that does not require verbal communication, and the people who have worked to help me accept my needs).

With the encouragement of the volunteer on the SHOUT line last night, I psyched myself up for one last phone call (feel I'm doing well on the resilience front here!), to my GP surgery, to explain my situation and ask for help.

I went in autism-focused, spiel written, and began with "I will read it out. Please don't interrupt until the end because I have autism and will get mixed up." She listened and waited until I had finished, before asking if she could continue. She said she would get a doctor to ring me back.

And here we reach the climax of the work I have achieved: instead of being a good patient (or just being overwhelmed and on autopilot) I responded that that would be a difficult problem!! And the beautiful woman uttered glorious words, the like of which have never previously been heard from the mouth of a GP receptionist (or something...): "would email be any better?"

Dear lady you, you, are the Queen. Nothing would be better than email. 

When your communication needs can't be accommodated

At the risk of becoming ranty, I'm turning to trusty Mr Blogger once more to solve all my life's problems. I mean, to help me process things that happen and deal with my emotions in a non-destructive way, of course!

I have a particular problem at the moment and I can't find a way to solve it. I've tried really hard to make it work and I've resiliently asked for help and expressed the problem multiple times, but to no avail. Hence I fear this is just going to turn into a rant.

I knew there would be difficulty in having all my post-discharge support remotely (in hospital, I had support to access remote appointments and to debrief after them and still had trouble managing), and I knew the adjustment from 24/7 care to 2 remote appointments a week would be challenging. I also knew that the phone and video calls were my only option, so I got on with it. I found things that helped: using my headphones so I can hear better and am not filtering out extra sound to hear the voice on the other end, buying extra data so I can take my support team for walks - it's easier to engage and process when I'm outside, and once I've used the movement to help me regulate at the beginning of the call I usually feel better able to sit somewhere and manage the rest of it. I take time out in my sensory cave when I'm feeling overwhelmed after a call. I am trying so hard to make it work.

All these things help, and mean that on a good day I can get benefit out of an appointment even though I come away exhausted and often realise shortly afterwards that I didn't say what I needed to say, or that I didn't process something properly and missed out some conversation that could have really helped both of us.

But on a bad day I can't communicate properly. I can't say things at all so the person doesn't even think I'm communicating (often they probably think that I'm managing with the remote conversations because I am engaging and talking about some useful stuff). They go away because they think it's a bad time to talk, and I'm left feeling even more alone, hopeless, trapped and useless because my one chance at getting some help has failed. I have to survive until the next opportunity. Which I still can't access properly because I'm still autistic. 

I have a meltdown afterwards. The only way I can get help is by dialing another number. I don't know why I think this will help. Maybe I don't, but it's the instructions I've been given and it's my last shot at trying to help myself. I'm working on resilience. Keep on trying. Unsurprisingly I struggle with that phone call. Eventually they get some information out of me. They say they'll get my nurse who knows me better to ring me back. I can't tell them that I've only spoken to her 4 times anyway and another phone call is going to add to my distress and overload, not solve anything.

She rings back later and it's a disaster for both of us. She shouldn't have been put in that position, but it wasn't anyone's fault. I couldn't give them the information they needed. I'm the problem. Another meltdown. It's a good job I've lost all sense of public decorum or awareness of anything beyond my distress or I'd be very embarrassed by my behaviour.

I get home and stay safe the rest of the day, thankful for the presence of Mr Peggy. All the blankets, time to write an email apologising for my distress on the phone and trying to explain my problem (this email to send via my other nurse, because they're the only one I'm allowed to email). Comedy TV. They all help me keep calm until the night time. The odd half hour of sleep here or there. The anxiety builds before the second of my scheduled phone calls of the week, with the poor Peg from yesterday. I can hardly bring myself to answer it. It's my last attempt at engaging in this remote support - I'm going to have to go it alone after this. I know where that is likely to lead.

The phone call doesn't help. She can't fix anything (not her fault), I can't fix anything. She goes away, not wanting to overwhelm me with telephone conversations, but meaning I'm support-less for another 8 days. "Ring the office or the crisis team if you need any more support." Great plan.

I've tried all avenues, so I guess it's like it's always been: you have to cope alone and you should be able to. I spent seven months being told it's OK to be different and have different needs, and being helped to work things out, but none of that's true in the real world. Your needs are unreasonable. The 8 days may well be longer, because I'm not sure I can face the disappointment and distress of another phone call and its aftermath. 

Sometimes lockdown is really 💩

And the OT, insurance people and car servicing people trying to ring of me may as well go stick their heads in an oven (although actually, often if you explain your difficulties they do accommodate and communicate by email...).

Bad, broken or different? I need to be alone

Like many others, I have lived most of my adult life in perpetual pursuit of treasured time alone, getting through whatever is happening by aiming towards my next good chunk of alone time. I'm always on the edge (or ever more frequently over the edge) of coping, feeling that things are going to fall apart any minute. The last couple of years they very often have done. Shutdowns became increasingly common, they started to affect more and more situations until I just couldn't function effectively.

Usually I need to be alone...

I've had quite a groundbreaking realisation after being in hospital for an extended period. The first few weeks I spent in my room whenever that was an option. I was settling, learning a new place, new routines, new people and processing a whole load of crazy stuff. Hours and hours of alone time. About four weeks of it, I'd say. But eventually I started to venture out. Optionally spending at first little moments of time in communal areas, then slightly longer periods. I now actively enjoy and choose to spend time with peers. I would rather be with them than alone when I am dealing with difficult thoughts and emotions, which is a new and unexpected experience for me (feeling inclined to be around others when struggling, not dealing with difficult things!!). Admittedly it is an unusual environment, where all the people have certain similarities in our brains, and I don't think it's unfair to say that the amount of care and understanding and support is unparalleled, at least in my experience.

But it shows me something new about myself that I never expected. I'm not a bad person, and I don't hate people. When the input is reduced down completely to below my threshold (And this was to zero, for an extended period. It's a funny experiment/opportunity that you'd never be able to run in real life, but retrospectively I'm so glad that it's come about!), I actually choose to be with people. I want company; I want to feel connected. It's just that I require so much processing time to stay regulated and avoid becoming overwhelmed by the anxiety and emotions that build up from being alive. My capacity for effective and beneficial social interaction is tiny. I need to stop before I feel like stopping in order to avoid delayed overload.

It makes me feel a little sad and hopeless, because I can never be as big a part of things as I want to be if I am going to live my life in a way that's manageable for me. I won't know people as well as I would like to. I won't be such an integral part of groups or such a support to friends and family as I would like, because I can't survive long term if I do all that I want to. I have to miss out, and people have to miss out on me. I feel like a broken human - one that doesn't work properly. Even being in touch through electronic means has a drastic impact on my coping levels. I don't know what this means for how I manage my life as I rebuild it.

But I'm still glad that I've had this opportunity (despite how it's come about - every cloud has a silver lining and all that) to see what happens when I take normal life away and start from zero. I'm grateful to have discovered truths about myself that I never would have found out by any other means. It allows me to be a little kinder to myself, and to know "me" a little better.

 

For the minute, I'll sit in my tree and try and be alone as much as I need to.

I won't wear make-up on Thursday: Body Intelligence gleaned from staying in bed!

OK, it's true I didn't wear make-up on any of the other Thursday either, but that is a reference for the Cool Kids who both wear make-up and listen to "actual music". Maybe I should have picked the more accurate line from the song "I will do nothing on Thursday: sit alone and be."

That is exactly what I have done. Well, I went and let the chickens out about lunch time to get rid of the anxiety that I hadn't done that or fed the guinea pigs. Brought the Piggle Peggies in for moral support and returned to the land of bed. At 3.30pm I even progressed from a prone, under-several-duvets state to seated with just one merely draped over myself.

I had done that thing that's meant to be sensible (although admittedly it may come slightly out of desperation too) where you communicate that you need something before utter disaster hits. The trouble I have discovered though, is that then if you get the thing Brian tells you in no uncertain terms that this is a catastrophe. You shouldn't have the thing: no-one else has the thing - why are you any more entitled to the thing than anyone else? Accommodating the thing has cost other people: you are an even worse person for needing, and taking, the thing. You didn't really need it anyway, you just quite fancied it - you could, and should, have managed without it; after all, nothing terrible happened to show that you needed the thing, so you must just be greedy and lazy. Now that you've had the thing, what if you actually need it in the future? You've already had it so you'll have to manage without next time. You can't carry on like this, "needing" things left, right and centre, you need to pull your socks up and get on with life like everyone else.

Contrary to appearances, I haven't just come here for a whinge about the Brian. In my nothing-ness and the approach to it I stumbled on a couple of observations.

The sensory may be more involved than I think.

A perfectly adequate set of resources for
the day

This is funny, because I've just started reading a book by Penny Greenland of JABADAO* about (well, partly about) how body intelligence (the is a whole chapter just introducing the concept of what this is) can be used in the mind together with intellectual intelligence to approach everyday issues and problems.

In the lead-up to realising I needed some space I first noticed my brain responses: getting irritable, decreased patience, increased behaviours and unhelpful thoughts. Then as things progressed over the next day or two and I became more stressed rather than less, on the final day I was much more aware of sensory responses. The piercing vehicle-reversing-beep I had to block from my ears, a scratchy label in my clothing, appreciation of darkness. The all-pervading discomfort caused by a foreign and distasteful (to me) scent on my fleece, that became so unbearable I had to give up my fleece. The proprioceptive/touch dysregulation of not wearing my fleece when I'm already stressed. The overheating of my body from the down bodywarmer I luckily had in my car that I fetched at lunch time to solve the proprioceptive problem.

To be very brief, something like this...

I don't know whether it's that the warning signs come in this order - the lower-level stress is signified by more cerebral warnings and the sensory warnings signify that things are escalating - or that my awareness works in this order: the more significant my stress levels, the more I function on a sensory level and the cognitive loses priority. I suppose processing capacity is decreased when under stress so this would make sense. Now that I think about it, there's a lot of theory that explains this, but you can go and Google that - I can't be bothered to talk about it now (but if you ask I'll go and find it!). Yesterday I also began exchanging words quite bizarrely. I explained to my fellow class Peggy that I was going to cut the Duplo lengthways to make it fit. I meant Velcro. Just picked the wrong word. I used the word purple instead of person to the same colleague about five minutes previous to this. My thoughts were jumbled and I wasn't properly paying attention to myself or anyone else.

I came across a quote in the JABADAO book today: "This woman's focus has changed so thoroughly from intellect to body that stringing words together has become difficult. She has swapped an intellectual way of being, for a body way" (page 33). I laughed aloud when I read it because it seemed so apt. The lady in question had made this transition intentionally, but I had perhaps begun to make it unconsciously, which is why the kind of work described in the book is so important. Becoming aware of and utilising this body intelligence can help integrate the systems and employ them in a helpful way.

As I was sitting alone and being today, I attempted to be mindfully aware of my frustration, my guilt, my fear and anxiety (two distinct states/thoughts for me) allowing them to be, while listening to what my body needed and permitting it to have that. It meant I stayed in bed for a really long time. It's now 4.30 and I'm still there in fact. I never stay in bed for that long. I sometimes have days where I stay a pretty long time, but eventually my body tells me it's time to do something else. I can feel the time approaching, but it hasn't come yet, and I'm trying to ignore my own judgmental feelings and my feelings about how it would appear to others and not rush my body into doing what it's not ready for.

As I knuckled down and did nothing I found some of the reasons why here was the right place today. They were mostly sensory. It's not that I'm in a dark place mentally and can't "summon the motivation" to get out of bed (don't get me started on people making those kinds of judgments). I am not psychologically bound to being here. Neither am I intensely physically exhausted and thus unable to get up, although I am tired. This time, my body has told me that this is the right place for it to get what it needs right now.

Not laziness. Important work to enable
future functioning. Down with shame.

What it needs is a lot of touch/proprioceptive input. When layered for weight, duvets and blankets give my body the perfect way to receive input to my body's entire touch receptor; its largest single organ, the skin. A friend once told me of a discovery that the more of her that was touching something, the more comfortable and relaxed she felt. I am exactly the same, and the only thing I have found that beats a good pile of duvets is swimming. When I move in water (not necessarily in a conventional "swimming" way, but in the way my body wants to), it moves past every cell of my skin. I find it exceptionally helpful and regulating, and now that I've written that, I've realised that was my first sensory clue to my dysregulation. I noticed the immediate calming effect of being in the hydro pool the day before the other sensory clues and commented on it at the time.

The other reason I needed to be in bed was to regulate via the olfactory sense. I would certainly never have intentionally sought this method of helping myself, but sometimes my body knows more than my brain (body intelligence...). Now I know that this will disgust some of you, but try and let go of your social conditioning for a minute and bear with me. Our own smells and those of our loved ones are some of the earliest developmental experiences for our olfactory sense, and thus easily processed and calming (credit Joanna Grace). I became aware part way through the day that I was frequently seeking this input, putting my fingers to my nose, and even smelling my own shoulders and arms (weird, I know!). When I leant over the other side of the bed I smelt Mr Peggy's smell, and after stroking the Piggy Peggies my left hand smelt of them. All of these were contributing to the gradual regulation of my body.

The final piece of body intelligence I gleaned also came from Hopping Home Backwards. There are little exercises throughout the chapters which aim to help the reader understand better by experiencing what is being discussed. All I could notice was that every time I tried one - they are all about listening to the body and what it wants - all mine wanted was stillness. It didn't lead me into any kind of movement unless there was a part of my body that wasn't touching something and then it asked to curl up smaller or snuggle into a bit of duvet. For me this was surprising. Mine is a body that likes to move. It needs to move. It needs to stretch a lot and it is useless at sitting still. But all it would do today was be still.

And I'm pretty sure it was right. I was right when I communicated that I needed some space. Whatever the Brian said afterwards, and it is shouting loudly as I write this, I did the right thing. And it was right to do the right thing. My brain can sometimes lie to me, but my body knows and tells me the truth. You've done enough. Sit alone and be.

*Hopping Home Backwards, Greenland 2000.

Doesn't play well with others

Been writing a lot, not about me. Clues as to the kind of week I've had. I felt a little bit hypocritical posting wonderful posts about wonderful things when the internal life has in all honesty not had an enormously pretty week. Half term hasn't sat right, I've been surviving instead of replenishing as I'm supposed to in the holidays, and I'm scared witless of what will happen when I go back to work because of that. Poor Mr Peggy has barely seen me, and when he has I haven't really been there. He doesn't know about any of this because this is the only way I can manage to tell him. Sorry, and thank you, and I love you.

Anyway... enough of putting you honestly in the picture! The Brian told me to write about being misread, and the dangers of performing too well.

Indeed, I have required every coping method under the sun, good
and bad, and as my doctor commented, a few more besides!!

It's a well-known fact that people with autism (including people who speak and people with Asperger's) have difficulties with communication. Stereotypically, verbal people with ASC tend to take things literally, don't always get jokes, misread social situations etc etc. But how often do we talk about what happens the other way round? What about expressive communication?

When people speak and have honed their copying and performing skills sufficiently to generally pass as "neurotypical", it is likely that others will forget or be unaware that they may have difficulties with expressive communication. If you're "social" enough to survive conversations and social situations then you're one of the crowd and judged by their social rules.

That can be gratifying, but I discovered today it has its hidden dangers.

My doctor's surgery very usefully has an online service, which is great for people like me. I can book appointments without the dreaded speaking machine (well, if there are any... and not with nurses or Urgent Care), I can check when my appointments are (hello last minute - or any other time -anxiety!) and I can read my notes on there too (useful for all sorts of reasons).

I read my notes after an appointment and realised I had come across as "guarded", "closed" and elements of my demeanour were noted. Now, I don't have a problem with these observations because the are entirely accurate in a way, and I imagine are clinically useful, particularly in the context of how I may present at different times.

The thing is, although they would conjure up a very accurate image of my outward appearance, the assumption about my inner state, specifically my intentions, is misleading. My motivation (albeit subconscious) in avoiding eye contact and curling my legs up is to increase my communicative capacity. Despite appearing guarded and closed, by regulating my sensory and emotional world in these ways (eye contact is stressful and exposing at the best of times, and increased touch/proprioceptive input over more of my skin is calming) I am trying to con my body and brain into thinking they are safe and that it is OK access the important and very personal information and then to try and give that to somebody else.

The long pauses and short answers are testament to the difficulty I contend with to produce even the little information I am giving. They don't mean I don't want you to know. They mean it's even more important that you do know. They mean I know it's important and that's why it's more difficult for me to get it out. I need extra time, more clear and specific questions, understanding. (Although sometimes I might not be able to tell you because you've asked... that's a different matter and you'll probably receive exceptionally clear "I don't want to talk about this" vibes, even if I do want to talk about it but can't right now because you've just asked!)

So, the observation that I am needing to feel safe and I am not communicating is absolutely valid and a useful indicator of mental state, but it is easy to misinterpret these presentations as implying a wish not to communicate instead of the very real and painful need to communicate. I would hazard a guess that this doesn't just apply to me.

The thing that got me was that I wouldn't have known I came across that way unless I had read those notes, and it makes me sad to think that people might interpret my behaviour that way. Think of the potential impact of a lifetime of that kind of misunderstanding on someone's social life. And wellbeing. If I cross my arms it's because I need some more physical feedback, not because I don't like you or don't want to talk to you.

To dare to expose something real and important about oneself - a wish, a choice, a need, a feeling - is a terrifying, monumental task (when I finally finish the book I'm reading about 'Exposure Anxiety' I will write a big old post on it!). For some context, consider that my brain tells me that a blink of the eyelids or a pressing together of two fingers may even be an immoderate display of emotion; anything more could be an unforgivable betrayal of the insides. Please don't misinterpret my efforts to battle the anxiety brought on by even contemplating such a task as outing the ins.

So when you next see some communication expressed, question its intention rather than assuming what you would naturally infer. Use your knowledge of the person and their nature. You can try asking if you're not sure. We may or may not be able to answer. Maybe we'll write a blog post about it later.

Sensory Self Care Saturdays

On Saturdays I roll out all the coping strategies.  Every Saturday is a self-care Saturday. They're not necessarily the same every week, but some of the current favourites (I won't list the negative ones...) are walks in the countryside, cuddles with the Piggy Peggies and painting by numbers. Today as you can tell by the blogging activity, writing has been one, as has seeing a friend.

I've written before about how sensory experiences can help with my wellbeing (here is a good place to start) and because one of the aspects about my autism that I get asked about most frequently is sensory needs, I thought I'd give a window on one of my coping tools of today.

I had a shower.

Sounds simple, but let me see if I can give you an idea of how I had a shower and what the shower did for me.

Before I had my shower I stayed in bed. Usually my self-care Saturday begins with a lie-in, followed by pilates - just the ticket (combined with Friday night yoga!) to getting back in line with myself. This was a hard week though, and Friday was difficult and included bathroom floor time for lunch, yippee. I have learnt that it is both survivable and at times beneficial to follow my body's hints that departure from routine would be wise. I cancelled pilates and stayed in bed. For ages. The weight of the duvet(s) gives wonderful proprioceptive feedback to the whole body and savouring the experience nourished me.

When I had finished duvet-ing I took the luxury of leaving my contact lenses out and showering with the light on.* I'm very short-sighted so this transforms my sensory experience: my eyes focus on the water cascading immediately before them, glistening in the light - sparklewater! (see also. sun on the sea or a river...)

I had no time limit on my shower; no deadline for leaving the house, no stressful event to prepare for later. I closed my eyes and tipped my head back, focusing on the sensation as the water woke my scalp and face. Nice and warm - bed temperature eases the transition on the body... calm. Tappy tappy touch dancing on my skin.

I have my phone set to play "My Mix" on YouTube - no stress of deciding what playlist I want to listen to, no decision making, but music that I like because it's made from my playlists.

I turn around to join the sparklewater again and become absorbed in the way the shadows of the water drops play on the white bathtub if I shake my hands and move my fingers.

Eventually I move on to wash my hair and myself, with familiar scents and an unchanging routine. When I start to overheat I know I've been there long enough and I share a last few moments with the sparklewater before I say goodbye. My shower has a five-second delay on its "stop" button - this Godsend makes the transition more bearable. And I know I can come again soon. I am so very grateful that I am privileged enough to be able to access this form of self care: physically, culturally, financially.

Photos just don't compare.
Go and try it for yourself if you can.

*It's funny, because it's there every day, the sparklewater, but it's a special treat to see it. My contacts give me so much (I cannot focus beyond about 20cm without them and I have much better vision than with glasses, not to mention they are so much simpler, especially in my job!) but in entering the world of the distance-seers I lose the beauty of the morning sparklewater. On weekdays I also shower with the light off because dimmer light is more calming for me and our bathroom fan makes an unholy racket too, and I need to retain all the calmness I can on schooldays!

Stigma: Mental Health Awareness Week 2019

I thought I'd address stigma as that is obviously one of the main aims of Mental Health Awareness Week: to get people talking and reduce stigma, to remind people that "people with a mental health problem" are just people (most of us will experience some aspect of trouble with our mental health at some point in our life), to help reduce feelings of shame and isolation.

As I pointed out earlier, I write about mental health on here because it is something that closely ties in with my autism and a large part of my life recently has been managing these. I consider myself pretty understanding of issues concerned with mental health, I try and educate myself on how different aspects affect different people, I try and be a good friend. I will happily fight for other people's needs and increasingly voice my own on occasion and I will shout (metaphorically) about whatever is needed to reduce stigma.

So what should I post as a special for Mental Health Awareness Week? It would be appropriate to write a big reveal of my whole mental health story, of a condition that desperately needs people to do just that. But it turns out I, the inclusive, mental-health-aware person, have too much stigma. I still have too much shame to tell the world the less palatable truth about the ins and outs of trying to live with and recover from my particular brand of Brian. It's fine if it's someone else, but the fact that I can't own up to my own truth displays a level of stigma I don't care to be associated with.

Because I like to make people happy and to reinforce to myself the positive aspects of life and recovery I tend to make sure I end on a positive when I'm writing: the positive coping strategies I've used, the fact that it's OK to have difficult times, the silver lining to the cloud. This is a good thing, and it's important to highlight hope because it saves us, but it might leave you with a false image of me as a super-well-adjusted person winning at living with and recovering from mental health problems. I still have shame. I still cry on bathroom floors. I still use bad coping mechanisms. I still hide, so this is a bit of a non-post really.

But in usual style I will come round to the positive at the end. My new GP gave me a beautiful nugget this week. She is fab and seems intent on supporting me as I carry on post-discharge. She asked about things I do to help when I'm having a difficult time and I ended up explaining as I have to many people before "I am the queen of positive coping strategies. I have them coming out of my ears (metaphorically). And yet we're still here".

And where would you be if you didn't have them?

Hm, touché my friend.

(I'm pretty sure others have pointed this out before - my favourite Welsh Peggy for certain! - but for some reason it hit the spot at that moment). It still leaves me wondering where to go when I've used every tool in the book and still need the oh-so-effective maladaptive strategies, but at least I have strategies to get me this far. And re. my last post, just because I'm where I am right now doesn't mean I will be forever.

Maybe I'll tell my story another year.

Accepting Today

Different days are good for different things.

Just because you can’t do something today doesn’t mean it will always be like that*. When I feel like I can’t do something, I can’t imagine ever feeling any different about it: it is absolutely my truth. But that’s not true. I am finding that if I let myself not do the thing, there often comes a time when I feel able or even willing, to do the thing. That time often comes far sooner than I expect, and I suspect it is related to accepting my needs in the moment and giving myself the freedom to do or not do as is best each moment.

The more I pressurise myself to do something, the more I cannot do it. It is more than resistance I feel: an impossibility. I am scared, feeling almost literally petrified - if I must do the thing, there is no way out, no option or safety net if for some reason I fail. I get caught in the dilemma of “I can’t do the thing and I can’t not do the thing” and this is when my brain implodes and off I go into threat system (fight/flight/freeze - I am a freezer, hence “petrified”). Acceptance is an exit from the dilemma that leads to crisis.

Actually it turns out that whatever I can do today may not be the same as what I will be able to do tomorrow, and it may not be the same as what I could do yesterday.

And that is OK.

Some days I can use all my
tools to make a moment of OK

Some days I can’t talk but I can write. Other days I can seek out a friend to help me.

Some days I can read but I can’t think. Some days I can think but I can’t read!

Some days I can’t stop thinking but I can dance.

Some days I can’t dance but I can wrap myself in a blanket.

Some days I can’t eat; other days I can’t stop eating. Some days I can be balanced.

Some days I can’t leave the house but I can support a friend over the internet.

Some days I can push myself; some days I push too far. Some days I can show myself compassion.

And that is OK.

Some days I can play upside down!

Every day (and moment, because these states rarely last a full day!) is different and every day is a part of my life that I can choose to accept, whether or not it’s what I hoped or planned for. When I choose to accept my truthful state of being regardless of how I might be inclined to judge it and of how it looks to other people (Although please take note - it really does make a difference if those around you are accepting too. It is an exhausting fight to accept the unwanted sides of your life), I tend to have a better state of wellbeing and a higher probability of positive change.

I dare you to give it a go: try being kind to yourself instead of beating yourself up. Cut yourself some slack, listen to your body and believe what it tells you for once - it may just be right.

*A couple of disclaimers here:

1. I am purely talking about psychological “being able” to do things here: having limits to physical ability to do things is another matter entirely and probably approached in a completely different way. Sometimes my psychological “not being able” to physically stops me from being able to achieve the activity; other times I could theoretically do the thing but I know that it is not a good idea to. I am working on categorising this as a “can’t” to combat the very powerful “should”s in my Brian!

2. This does not mean that I never challenge myself, that I “let myself off the hook”, stagnate or gradually shrink my life to a sad place, although I do sometimes miss out on things I would like to have done. On the contrary, experience has shown me that through accepting when I can’t, I actually have more occasions when I feel able to do more than expected, or I feel more able to take those opportunities or risks because I know I have a safety net or an option for “failure”. I am also more likely to enjoy and be successful at the things that I do do. I am more likely to push myself on the things that matter rather than indiscriminately spending my efforts trying to do everything including things that are potentially damaging, or bring difficulty with no benefit.