Uncategorized – Shiny journey

Perpetual Grief

I have experienced meltdowns for about as long as I can remember, such is the joy of the autistic human! To the outside onlooker it might look like I am upset as I usually cry, or agitated as might rock, or pace, or just be being obstinate or aloof as I don’t talk. So I thought I would try to explain what I feel on the inside.

It usually starts with a sense of disconnection, feeling that, even if I am surrounded by people, I am utterly alone. I know this feeling is common for lots of people, if not everyone, but that for me is the start. This can be triggered by, well, pretty much everything. I am also hypersensory, which pretty much does what it says on the packaging – noises, textures, visuals, smells, even tastes, can all create this feeling of disconnect for me. The world can be a scary place. Once I lost two hours of my day because someone brushed past me in the street, whilst I was wearing my new coat (only been hanging in the wardrobe for two years at this point, things need to acclimatise!) and as I had not fully pondered the new fabric (it was in the wardrobe doing the visual, not on my arms doing the ooh.. fabricy fabricy feeling!) it dragged funny. It felt horrifying. And more importantly, it felt new. So my brain needed to fully process this exciting new development. For two hours. Even writing this down, it feels ridiculous. For two hours, I hyperfocussed and cried over a weird sensation that my new coat created. But back to the start point, what does this actually feel like?

It feels like grief. Imagine the most intense sadness you can, the most brilliant white light of emotional agony, and then imagine the absurdity of someone asking you if you are alright? In this grief state, there is no room for questions, no room for answers, I am screaming so loudly, and I can’t make a sound. My verbal communication disappears (but I can usually type or write) so I cannot even tell anyone how bad things are. It’s now as if I am completely disconnected from the world and am consumed with such an intense grief, that if this goes on for more than hour (and sometimes, particularly if I am alone, several hours), it leaves me in a very dark place where thoughts of self-harm have been a feature. It is nothing I would wish for any other human, but sometimes I wish I could explain what is happening, as me being like this, breaking like this, causes people to distance themselves. This compounds things. Obviously. It isn’t that I am sad, depressed or looking for attention, its that the wiring in my head (if ever you have an idle five minutes, check out autistic brain scans, they are all different! Neurotypical.. all the same..) is different. My processing of the world is different, not better, although being hypersensory around bread baking.. I could literally lay on the floor and achieve mastery levels of meditation within about 4 seconds, and those 4 seconds are just me getting myself comfy – the world is no more, there is only bread smell! So maybe it is sometimes better, but largely it is just different.

I have explained to those closest to me what I need when I have a meltdown. Mostly they neve just go from zero to sobbing on the floor within two seconds. I usually have time to ask someone for help. That has been a critical learning curve for me. Getting diagnosed meant I understood what was happening better, and through that, could put systems in place to make things easier for me. I phone people and ask them to talk at me. I do not want questions, ‘are you alright?’ is about the worst one, as then my brain, clearly knowing that it isn’t alright then realises that it is obvious to others that I am not alright, process cycles round and round.. What I want is to hear about someone else’s life, what they have been doing with their day. It can be as boring as anything, and it grounds me. I don’t want to hear about me. If someone is in my space, then a huge extended hug often helps too. Both of these things reset my head space and I can be connected and in a happy place again.

Map Point: Where do I still need to ask for help?

My heart sings bliss

Occasionally in my life, I have fallen so hard in love, that it becomes all consuming, electrifying, all encompassing. This has happened to me in romantic and intellectual ways, the frantic need of another. Sometimes this has been driven by my insecurities, a compulsion to extend my presence so that I can show someone else how amazing I can be. To feel the endorsement from the other because I was unable to self administer this love. But sometimes, I have not been insecure, and then the feelings stem from desire. This is my story about Jay.

Socially, I had been in the same circles as Jay for a while. Same places, same spaces, but interaction was at best limited, at worst indifferent. Looking back with hazy memory eyes it easy to remember details that you only wish had been there. It will be my remembered truth.

We had been at uni together for a while, same course, but whilst the course was massive, the campus was small and there was generally high interaction outside of classes. Especially among those who lived (it wasnt a residential space, this was completely just a place that served alcohol) in the student union, close to both the pool table and bar. Which are clearly cornerstones of student life. So I had seen Jay around a fair bit. Had also bumped into him (not literally, why is this phrase so violent?) a few times in music venues, so there were definitely shared interests too. This seems important. Any friendship can pretend shared interests for a while, but if these fade, then only the dullness of familiarity remains. And this was utterly never the case with Jay.

As we began to chat more often (in the aforementioned bar, some people are monster eager to pool and drink post-lecture. We were those people) It transpired we had much crossover. Music, gaming (SNES is king!), pool (obvs, there was never a clear winner when we played.. but this might be memory and delusions of pool grandeur) but it was somehow even started as more than that. Flirtations with being vegetarian, politics, worldviews, all seemed to harmoniously align. With increased talking, it felt so easy, like our friendship had always been in my life, and we started to arrange to meet up. This was a big change. Meet-ups, on Wednesday afternoons (free periods, meant to be sports afternoon, but campus was too small for any of that nonsense..) became something of a thing.

We started sitting next to each in some classes, moving slightly away from our more established groups. And we would pass notes. Like a lot of notes. This was pre-mobile phone days, and notes were cutting-edge tech. The notes were intimate, sexually driven, but this was all for fun, as we were definitely platonic friends. We said this often.. which might have been a marker, but I guess as long as we both believed it, it carried our truth.

The uni was close to London, so we often jollied into town. We walked over Tower Bridge (underwhelming), bimbled around Camden (so very much awesome), and hit the culture bits too. Tate Modern was my go-to, V&A was his. It is an incredible feeling to show someone else your world and to be able to share the passion that you have for things. Sometimes this feels like a privilege, and looking back I understand how important this is for relationships to work well. If someone close to me isn’t interested in me, and only their stuff, I have learned to step away. This perhaps took longer than it should have, but we are all on our own journeys!

Then, always randomly, always seemingly out of nowhere, something changes. Although we had always got on well, would occasionally hug, there had never been any physicality between us. Then one day, in the union (I blame this place for a lot!) as Jay wandered (swayed) over to the bar where I was patiently waiting already, he pulled my hair. Just a bit, not hard. Over as quickly as it had begun. And somehow there was a noticeable shift, nothing was directly said, no words spoken, but I just sort of stopped and my eyes closed. And Jay watched.

The evening continued much as it had done before, laughing, joking, showing off our prowess with pool cues with our friends, but every so often, I would find my gaze shifting back to Jay, and more often than not, would find him already looking back. Being a competitive sort, I don’t usually back down from being stared at (eyes may be burning, but dammit, I will hold!) but his look, his eyes burned into me. The sudden awareness of every conversation, every mock flirtation, every everything seemed to transfer between us with that look. And it was intense.

No.. intense doesnt really do that feeling any justice whatsoever. It was a feeling of being all the vital of an eternity of lifetimes, the electric surge and power of a strike of lightning that refused to ground, I felt the pressure of the tug of my hair, over and over and over and it coursed through me each time. I didn’t have any clue if this was love, but it was an unprecedented desire that arrived all at once. And then, as with all good things, we both left independently that evening for the holidays..

University is a strange place. We all arrive, so many people, in this almostly instantly close knit community, and then, around every six weeks or so, disappear and return to our other lives, our at home lives. Parents still cook our meals, we find our at home friends, do our at home things. Between me and Jay, we decided to take note passing to the next level. Correspondance! Letters seemed to go back and forth every few days, and whilst there were inferences to this seemingly small act, we were both hesitant, questioning. Where did this place our friendship? What did this mean? Because it transpired fast, this wave of all possibility that had engulfed me, consumed my being, had consumed him too.

This morning before work I saw a couple leaving a house, multiple children in coats, carrying art projects, lunch boxes, waving at their friends. The couple were a morning mixture of chaos, smiles, tenderness, lost keys, and stumbling children. And I thought about Jay. We were almost perfectly balanced, perfectly in sync. I wondered where he might be now, not enough for a social media stalk, but I allowed myself a daydream of a life that might have happened.

And my memory was a bliss.

Map Point: Where in my life do I now feel that intensity?

Black holes

When I was around 20 I had possibly my worst autistic melt down on record. I have had meltdowns last longer, but in severity, we have a clear winner! Only at the time I didn’t know I was autistic, so, well that made it worse. And a few minutes ago I remembered it, and thought it might be time for a little processing.

I had planned to go to do some role play with a friend, and his friends. I hadn’t been in a few months, so was a bit nervous, but all geared up for the Saturday all day session. The day before I spoke to my friend, and I said what character I would be playing and he told me I couldn’t play that sort of character. I said I would find another, and I guess the phone call ended amicably enough, however, looking back with the knowledge I have now, that was the beginning of the meltdown.

I was in my family home alone, and I guess I started to cry almost immediately after the phone call ended, and I began to pace. Logical things no longer seemed logical, I was losing my ability to process. I pride myself on being an academic intelligent sort, and not being able to think clearly, with intense panic and anxiety spiking high, I was not in any sort of good place. This lasted for around two hours. I thought it would last forever.

I can honestly say that although I can forgive myself for the actions I then took, I will likely never fully forgive myself for taking them. In a spiral of grief, devastation, sobbing, in a space of absence of thought, I took some sleeping tablets. Some would be a quantity between 12 and 20. They were likely prescribed for me, it was a time of much medication.

This was the only thing I could irrationally do to remove myself from the head space. I had utterly no desire to die, I just needed not to feel so wretched.

As soon as I took them, practicality kicked in. I phoned a friend, she came over, ambulance was called, processes external to me were all in motion. Curiously the tablets did utterly nothing to me, the only issue was they were out of date, so the poisons unit had to be called. My boyfriend arrived, the hospital wanted to keep me in over night, but I declined, saying I was fine. As I was, utterly fine.

I couldn’t explain the devastating drop, but knew that it was over. I spoke to psychiatrists after who said I seemed perfectly happy. I was happy, barring low grade anxiety. I started taking antidepressants which didn’t seem to have any effect, and life continued much the same as before. But every so often, these inexplicable crashes would happen, and although I didn’t take any more extreme actions to change the flow of them, I had utterly no idea why.

I have had times where I have violently sobbed for days. Times when I have become uncharacteristically shouty for no logical reason. And even now, when it happens, never if, it is terrifying. However now I have a plan! When it begins I can recognise it. I usually cry, but now I know to phone someone stat. I use the code word ‘chicken nuggets’ with my best friend and he knows this is the code red. The reason this word was decided on I have no idea, but as am vegan, am guessing large amounts of irony was involved. I then issue instructions of ‘talk at me’ and he yabs on about his day. My mum, brother and one other friend are all amazing at this too. I need to reconnect with the world outside my head, and listening to someone describing the crackers they were currently eating, the issues at their work, or anything that is not remotely to do work me is a godsend. It let’s the cogs in my head wind down, reset. These people will always have my unending gratitude.

I have always felt that being friends with me must be really hard work. My anxiety is harder than bear average (not bear arms, they belong to bears) and sometimes a texture of material, a smell or a place will cause an unexpected reaction (also hyper sensory.. but that is a whole other thing!). And sometimes I won’t be able to process this. Then I need the help of others and this can be problematic.

I try to live a quiet life for the most part, but I also want to do things and see people. And new ups anxiety. Interestingly I was diagnosed with adhd last year, and the convergence of the two conditions I find sort of funny. Adhd leaves me incredibly unmotivated unless something is urgent, exciting or new, and asd trips anxiety hard on all these things. More irony.

Today I had a meltdown much like this one, but within minutes of recognising that it was happening, I was on the phone listening to my brother talk about his lunch time crackers. I am still exhausted after, and the exhaustion will last into tomorrow. My focus is shot, and my eyes will still leak, but the intensity of that terrible feeling has passed.

Sometimes I know exactly what has caused it. Other times, like today, I don’t. There was no specific trigger. Diagnosis has likely been one of the most important moments of my adult life.

Map Point: Can I accept that there are sometimes no reasons?

More food

I think I have written before about my relationship with food. I used to eat out a lot when my daughter was small so I didn’t feel so lonely at meal times, to me food is incredibly social. I have written about how strong my desire for a second child was that my weight gain was to generate a round belly. During sadder times, I found that depriving myself of food was one of the last means of control I had, and conversely, now I am heavier I am actually really happy with my body. Food is complex! Today I want to talk about food boxes and waste food. Both of which are changing my perspective.

I used to have a food box delivered with pre prepared meals. Being vegan, the choice was small, but me and my daughter found one meal we really liked. And we ate it, a lot. Like super a lot. Now even the thought of it does not generate happy. I felt good providing me and my daughter good food, but ultimately, it was still a meal from the freezer, with utterly no input from me (except the transferral from freezer to oven.. let’s not under estimate the effort involved here people!). The process made me feel tired.

Now I have a food box where ingredients and instructions arrive. This is sort of like looking in one of my recipe books, thinking ‘that looks nice’ and going out and buying the ingredients. Except its the hyper lazy version. It’s as if I am a chef on a cooking show and everything is pre packaged, pre portioned and I just throw everything together. The level of waste generated is making me sad, even with the company’s ethical claims. But the level of happy that I have that I am back cooking, and proper fancy ‘ooh look, blanched edame beans’ kinda cooking is a thing for me. Suddenly remembering a post about 7 course meal I scratch made. I am a damn fine cook! But as my confidence ebbs, I lose time, I lose energy, and eating out, getting food delivered, finding freezer food becomes a sad normality. As I really love cooking! And maybe a few weeks of boxes of food mischief will reignite this passion for me.

Food waste. Since September last year, I have been collecting supermarket food waste to distribute via an app. Firstly this has made me very aware on how much supermarkets throw away first hand, but also how much stuff I would usually throw away, whereas now, I can list it and someone comes to collect. And it isn’t only food.. I can now list all sorts of things that I no longer want! And also collect from other people. Now, in utter fairness, some people do post up some things which a little odd, and the boots I picked up from someone only lasted six hours before they were bin deposited, buy mostly its been revolutionary. When I decide something needs to be gone from my house now, within a matter of hours, it is. Also, I no longer have any guilt based foods, not foods I feel guilty eating, there are none of those! But things that I have bought on a whim and then stared at and contemplated what they might go with until they are out of date. I can relinquish to someone who wants!

Map Point – What do I need?

Long time, no sea

I have not written in years, life does the thing, and much is left behind, but to continue the cliche, sometimes in going back to what we used to love, we feel found.

The last five years of my life have been extraordinary in entirely average ways. In terms of my health, I received my diagnosis of autism. This was followed by regular therapy, trauma therapy, and finally sleep medication after realising that no amount of therapy was going to stop my brain from waking up asking if I would like to swing on a star at 3am (why always this time? On the dot?). I then received my ADHD diagnosis, and am currently involved process of balancing the drugs that keep me awake, keep me asleep. It has made me very aware of me, this feels, although likely isnt, new.

I was a quiet child, who would take deep and mischievous pleasure in hiding and surprising others, I would dress up, read.. spend hours in the bath reading until my toes turned wrinkly and the hot water needed topping up. I would spend hours staring out of my window at the trees, the birds, the sky. I would dance, and feel like a feather settling on a supernova. Very much alive and alone.

It’s easy for me to look back and remember the good things, and perhaps that’s how it should be. No one escapes the painful things and is too easy to sometimes look at others and imagine their perfect lives. No one has that, and it helps me to connect to the world remembering this.

So, since new year, I am taking better care of me, by remembering the things that I used to love to do and doing them (currently I have super wrinkly toes, but a top-up of hot water was not required.. that would require proper aqua-based stamina). I am reading again, taking photos, wearing clothes that arent pjs.. okay this last one should never have really been something that I have had to upgrade in my life, but have bought some fancy ass dresses, and today, without the usual holding pattern of three years in the wardrobe before I can contemplate transferral to body, I wore one. It has been in the wardrobe for a mere month, so with this in mind, things are clearly on the up! I have also finished my masters degree (awaiting marking.. ) and tomorrow, I might go feed some birds.

Map Point: Why did I choose to lose what I loved?

My Mum

Last night I felt sort of sad, kind of reflective (if I watched television, I possibly wouldn’t have time to think about so many things. Maybe..) and I thought about my Mum and what it must have been like for her to watch me grow up, just as I see my own daughter’s life emerging. And I thought that for my Mum, it must have been hard.

She must have seen a quiet sort of child, always reading, always making things. Often my Mum now comments on how many things my daughter makes and I love the similarity between us. She must also have seen a child who was woeful at tidying up, and I recall often being told to go up to the bathroom and sort out my messy face. This is another similarity that I share with my young one!

As I started secondary school, she must have seen a girl who was becoming increasingly lost in her world of books, a child who struggled to remember to do her homework, a child who was starting to have panic attacks. I remember my Mum often asking me if anything was wrong, anything she could do to help. And no, there really wasn’t, because I didn’t really understand enough of anything at that stage to have the words to explain.

She saw a daughter who was put on anti-depressants around age fourteen, and that same child was requesting counselling, although she still didn’t know what it was she really wanted to talk about. I think that this must have been sad for her. I guess it is incredibly easy to see a life in terms of its bleakness. But at the same time, I know there is also a very different story running parallel.

She saw a daughter who played classical guitar and worked hard to achieve her gradings. A daughter who developed a lifelong passion for photography. A daughter who loved board games and talked about music and politics. A daughter that loved to dance. She saw her child achieve academically and go on to university (thank you, Mum, for ironing my labcoat xx).

She also saw that child turn into a woman. A woman who has done so many different things, not necessarily things that she would have done, but things that I know she feels a sense of pride in. I think that sometimes it is good to reflect on the amazing people who have supported me, loved me unconditionally and had gargantuan patience with some of my endeavours! As a daughter looking at my Mum, looking at her as my parent, I see love.

Map Point. Where do I see love?

A Seed Bar and some Ice-cream

This morning I went to a vegan food festival. I anticipated this would be a day of much feasting and revelling in all things non-meat and dairy. However the reality was I was overwhelmed, in the last ten or so years, I have never been to a place before where all food was available to me. No menus to appraise for the one or two (if I am lucky) possibilities, no ingredient lists to look through for likely suspects. This was a place where I could have eaten cakes, biscuits, multiple hot dishes, pastries, salads and so much more. But I didn’t, I had one seed bar and an ice-cream. And this felt indulgent.

I have simply come to expect that my choices will be limited with food. I know that in many places I will order chips and salad and that the salad will quite likely be iceberg lettuce, sliced cucumber and some quartered tomato. And this will be served without dressing. I accept this. The way that I eat is not the way that most of the people I know eat. And this is okay too. Everyone makes their own choices with food. However, after the overwhelmingness of the festival, I realised just how much my diet limits my expectations of food when I go out. I guess I already knew this, but today, completely confirmed.

I then started to think if there was anywhere else in my life that my limitations have lowered my expectations? I thought back to what I wrote yesterday, and how I have lowered my expectations in some areas of my life, and it is time to make some beneficial changes. And then I thought about massive changes that I have already experienced and rationalised that it isn’t that I don’t make big changes because I do. It’s that the more changes I make to my life, the more possibility for change I see. The path gets ever wider.

I remember when I was in school about to sit my A Level exams. I could not foresee a time that they would be over, such was their enormity at that point in my life. When I was learning to drive, actually passing my test seemed like such a big thing. Same for my degree, different jobs I have had, and countless other things that I have done extraordinarily well with. So for me, it isn’t actually about me feeling limited, it’s about controlling my anxiety about all the incredible options that are open to me and not being too scared to try. Because if I really want to do something, based on past performance, I know that I can.

Having this knowledge that I can, is definitely a good thing, applying this knowledge? Something much more complex! Knowing that I have done, is past stuff, knowing that I could possibly do? That is the future, full of unknown variables. Learning to trust myself, to have faith in my decisions, that is where I can make progress, that is what will empower me to grow.

When I go to the vegan food festival next year, I will go prepared!

Map Point. What have I done really well?

Map Points

Map Points. I like the idea of thinking about life as a journey, never staying in one place for too long. This doesn’t necessarily relate to physical places, it could do, but I was thinking more about the spiritual and emotional paths that we follow. People often joke about how life doesn’t come with a map, but I think that it does if you can learn to look for the waypoints.

Every situation that we find ourselves in, we can learn from. Even the really harsh ones. Sad things happen to everyone, but having a questioning outlook, and having growth as the prominent mindset can make the difference between moving on and being stuck in the past.

A few sad things happened to me during my teenage years, the predominant one was being bullied. This never took a physical form, but instead took on a verbal one, of teasing, sarcasm and social exclusion. I felt isolated and wanted to be anywhere but school. The stress levels that this produced I guess contributed to the amount of respiratory infections and poorly stomachs that I experienced. I remember vividly one morning of getting ready for school, uniform on, lunch made, bag packed, all was well and then suddenly it wasn’t. I had got to my hallway, shoes were on, and I found myself uncontrollably sobbing, clinging onto the bannister, unable to let go. Even after my mum, who clearly must have been distressed at the sight of her daughter so distraught said I didn’t have to go to school, I still cried and couldn’t let go. It was all that was connecting me to the rest of the world.

I always enjoyed the learning bit of school, and as an adult, I relish learning new things, but my experience of school was quite terrible in many ways. I was always a quiet child, but that didn’t bother me as I was always happy in my own company. I had good friends, but being bullied was a mass invasion into my head space. It was unprovoked, unkind and deeply unfair.

However whilst recognising that it was a horrible thing, I am deeply grateful for these experiences, and for the knowledge that they gave me. Much of my time as an adult has been spent working with children in varying circumstances of hardship. I connect easily and readily to young people, I am not dismissive nor judgemental. I also help to increase their aspirations through my love of education. My passion facilitates others.

I think it would be easy to think about all the negatives only, but unless I can take the positives too, it will always be a resentment, always a burden. For me, understanding this has been critical to my growth. There is so much possibility ahead. And that is exciting.

Map Point. What events from the past do I still think about?