A Fear of Fireworks

I hate Bonfire Night. I really, really hate it.

When I was fifteen, I was at the cinema with my two best friends. We were in the middle of a film when something brushed through my hair and landed between mine and my best friend’s feet. I don’t remember now if I knew it was a firework or whether my survival instinct just kicked in automatically because I was out of my seat in a split second. I tripped over a bag as I raced down the row and someone hauled me back up, dragging me with them. My memory of those few seconds is weird, almost as if belongs to somebody else.

But, fortunately for all of us, someone from the row in front of us had stamped out the firework before it had gone off (while threatening to cut the balls off the person who’d thrown it). The lights switched on and a cinema employee came running in to see what had happened. Someone had come up the back stairs, thrown a firework into the crowd, and then done a runner. It looked like someone had thrown a pebble into a pond, we’d all moved outwards, standing almost in a circle with the firework in the middle. There were offers of compensation and calling of ambulances but everyone was okay, apart from the shock of it. I don’t think it had really sunk in because they rewound the film and we sat through the rest of it, although the three of us held on tight to each other until the film ended. On the bus home, we all jumped every time someone hit the buzzer for the next stop.

I was freaked out but I didn’t really take it in until the next time I saw fireworks. I was with my family, we were a significant distance from where they were going off, but I went into a panic. I felt like my ribcage was shrinking or like my lungs were swelling and I couldn’t breathe. I wanted to run. I wanted to run until I physically couldn’t anymore. And after talking to my Mum about it, I realised where that feeling had come from. Worst-case scenario, that firework could’ve gone off in our faces. I don’t want to think about the consequences of that.

Over the years, I’ve avoided fireworks wherever possible. But I haven’t been able to block them out completely. Even when I’m curled up in my room, I can hear them. I don’t have quite the same dramatic response as I did but they’re still a source of anxiety. Every time I hear one go off, my stomach twists. I can’t relax; it’s like there’s a current running under my skin.

As much as I’d like to order the world to stop setting off fireworks, that’s just not possible. I can’t control that but there are some things I can control, things that make the experience a little bit easier:

  • Create a calming environment – Fireworks going off outside my window is stressful enough without adding extra anxieties. So I try and remove the unnecessary ones and surround myself with safe things. For me, that’s familiar things. So on Bonfire Night this year, I took myself up to my room and curled up in bed with my cat and one of my favourite TV shows.
  • Try to distract myself – Giving myself something to work on helps to shift the focus from my anxiety. Otherwise I’m just waiting for the next firework to go off, amping up my anxiety even more. What works depends on how anxious I am or how tired I am. Sometimes it needs to be something simple, like playing a game on my phone, something that doesn’t require a lot of brainpower. Sometimes it needs to be something that takes up every inch of my brain, like playing the piano.
  • Making sure I have support – While there’s nothing anyone can actually do to help, having people checking in on me and making sure I’m okay (or at least not completely losing my shit) does make me feel a bit better. Or a little bit less panicked. And I’ll take what I can get. I think it just brings me back to Earth a bit when my anxiety starts to spiral out of control.

None of these things fix the problem or remove my anxiety but as I’ve written before, sometimes that’s not possible. Sometimes all you can do is get through it and try not to make it worse. This anxiety has gotten better over time; the sound of fireworks no longer sends me into a panic attack. Maybe one day I won’t even blink when I hear one go off. Maybe I won’t even notice it. But until that day, I’m just trying to make it through with as little anxiety as possible.

The End of an Era

I did it. I graduated.

The last three years have been a whirlwind. As I said in my Instagram post on Thursday, “my degree was an endless mix of inspiring, exhausting, frustrating, ridiculous, exciting, stressful, and joyful.” That’s the short version. The long version is very long. I dealt with a lot of grief and disappointment. I struggled with my mental health, discovered I was Autistic, and started to untangle all the threads that come from that. And that’s outside of university. At uni, I wrote hundreds of songs, met some amazing people, got the opportunity to go to Nashville, and ultimately, became a better songwriter. There were classes I loved and classes I hated. It was a constant battle to keep the lid on my anxiety and sometimes I failed. But I wouldn’t change it. My experience is coloured massively by how good my third and last year was. There were moments where I hated it, where it made me incredibly anxious, where I had meltdowns so bad I thought I’d never recover. There were moments I thought I’d never get through, that I couldn’t do what I was being asked to do. But somehow I did. Somehow I’m here, with a first and two graduation ceremonies under my belt.

The first graduation was for UEL, The University of East London. My school, The Institute of Contemporary Musical Performance, is a specialist music college and while it operates independently, it’s officially part of UEL. So we were invited to one of their graduation ceremonies. My Mum and my Granny came to this one. It was very formal – it was caps and gowns. That was something I was looking forward to and something I was very let down by. I’d thought it would be fun but it became a very stressful experience. Maybe it didn’t fit properly, maybe that’s just how it is but my cape kept sliding back and strangling me and my cap kept falling off my head. It took seven bobby pins to keep it on my head. As someone who struggles with sensory stuff, which includes the way clothes feel, that was really hard and really ratcheted up my anxiety. Fortunately, spending time with my friends, messing around and laughing, helped to keep it at a bearable level.

The ceremony itself was a bit strange. Because I only went to UEL once, it kind of felt like I was intruding, like I didn’t belong there. All the talk of the ‘UEL community’ made me feel a bit disconnected from the whole thing but the speakers were very good. I’d like to share something Geoff Thompson, the chair of the governors, said in his speech: “You are strong. Don’t ever, ever forget that you are strong… Never, never, never, never, never, NEVER give up on your dreams. It is not an option. It is not a choice.” You know, that was just what I needed to hear, just as I’m leaving university and heading out into an uncertain world. It was inspiring. It was empowering.

And all of a sudden, we were lining up to walk across the stage to shake the chancellor’s hand. It was weird: I had tunnel vision. No one could have applauded me as I walked across the stage and I wouldn’t have noticed. I was completely focussed on walking towards the chancellor, shaking his hand, and walking down the steps. It’s funny how something that you usually don’t have to think about – like walking – suddenly seems to take a lot of effort. But I did it, I got back to my seat, and I cheered for my friends. We threw our caps and then it was over. Graduation one was done. I’d thought I’d stay for a drink with my coursemates but after all the anxiety, I was completely exhausted. So I (eagerly) returned my gown and headed home.

The second graduation was a couple of days later and much more fun. This was just our school so it felt a lot more personal. Even though I don’t have many friends outside my course, I recognised a lot of faces from the other courses and we’d all shared the same space. We’re all connected by that. We didn’t have to wear gowns but it was still formal. Everybody looked gorgeous; it was really fun to see everyone dressed up. All four of my parents came to this one, which was amazing. I’ve never had all of them at a school thing before so that made me very happy. I was positively giddy.

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I really enjoyed the ceremony. The head of each course made a speech and then presented each of their students with the scroll. My favourite speech came from my programme leader, Jonathan. It was thoughtful and warm and inspiring. He even gave this blog a shout out, along with two other projects my friends have worked on. It was a very special moment. Another special moment was watching one of my best friends receive her scroll while her own song played. That was awesome.

And suddenly, it was my turn and I was walking across the stage, giving Jonathan a hug, and accepting my scroll. We posed for the photo and then I was moving again. I was a bit more aware of what was going on this time. The UEL one was a good rehearsal in that regard. There wasn’t an opportunity to thank my parents so I made the best of what I had. I located them in the crowd and did this:

It was important to me to do that.

Everyone received their scrolls and then we gathered for the reception. It was lovely to celebrate with everyone, to catch up, to introduce my parents to all these people who have played such an important part of my life in the last three years.

And that was graduation. The only other thing to add is that, to celebrate, we headed out for drinks. It was my first experience being in a club and my first experience drinking cocktails, neither of which I would say I enjoyed but it felt very empowering to try those new things and not feel trapped by my anxiety. Major thanks to my friends for looking after me and making it such a positive experience.

I will write more about my experience at university at some point but it’s a pretty big task. I need to go through my diaries and pull together some stuff before I can write an accurate account of that time but I will manage it at some point. It was a crucial time in my life. It’s a big part of who I am.

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Side Effect City

Just over a month ago, I started taking Venlafaxine for my depression. I’ve tried lots of different anti depressants in the past, many of which I had a bad reaction to, so I was nervous. Weaning myself off the Phenelzine was hard and I was very, very depressed but somehow, I reached a point where I felt ready to feel different. It was a bit like breaking the surface after being underwater. I was, and still am, desperate to feel better.

Week 1

I started on a very low dose, half the lowest therapeutic dose, so that my body could get used to it. But despite that, I felt the effects straight away and incredibly strongly. I was very nauseous. It was so bad that I couldn’t really concentrate on anything else; all my concentration was focussed on not throwing up. It made me dizzy and I was tired all the time. I did check with my psychiatrist to make sure it was okay to keep going with it and he said it would pass so I focussed on tolerating it.

The other immediate change was my sleep. I went from struggling to wake up before eleven (and I mean really struggling: it felt like I was drowning) to being wide awake at eight o’clock in the morning. It was bizarre.

Week 2

The nausea faded around the beginning of the second week, which I was very grateful for. My mood, while still pretty low, was stable, and I was still waking up much earlier than I had been able to previously. However I started having headaches and I was exhausted all the time, which made it very hard to do anything.

Week 3

In the third week, I went up to the lowest therapeutic dose. This caused a pretty dramatic reaction. For the first few days I was so tired that I fell asleep in the middle of the day, something I haven’t done in years. But despite that, I was waking up even earlier, between six and six thirty am.

By the middle of the week, I couldn’t concentrate at all. I couldn’t hold a conversation, I couldn’t follow the storyline of a forty-minute TV episode, I couldn’t even play a game on my phone… That was scary, but I couldn’t even really feel that because I couldn’t seem to process the emotion. I started to feel faint and very shaky and that went on for several days. If I stood up for longer than a couple of minutes, my legs started to shake and my hands shook so badly that I couldn’t hold a pen. That was very unpleasant.

Week 4

Most of the fourth week was lost because of severe, unexplained leg pain that had me in tears. My psychiatrist didn’t think it had anything to do with the medication and DVT was ruled out but other than that, we don’t know what caused it. I’ve been taking painkillers since and it’s been better. So that tired me out and overwhelmed everything else. But since then, the shaking has mostly stopped and I’m back to waking up between eight and nine in the morning.

This week is the first where I’ve felt different mentally and emotionally while taking Venlafaxine. I wouldn’t say I feel better but I’ve been feeling a bit lighter. That feels very strange and a bit scary. With this new lightness, I’ve been feeling a bit lost which I’ve written about here. I’ve been so depressed for so long that I can’t remember what it’s like to not be depressed. But despite all of those confusing emotions, I am pleased that this medication is starting to work. It will probably take another month or so to really know how it’s affecting me but it’s looking positive and I’m really grateful for that.

Some of the Little Things

I was looking back through the blog and I realised that you guys are getting all these big things in my life without really knowing much about me. I struggle with all things identity (which is a big thing for people with BPD) but I’m trying. I’m trying to figure myself out. I know little things, like favourite films and TV shows or whatever, but when it comes to who I am as a person, I feel very unsure. I’ll write more about that at some point but, for the moment, here are some of the little things:

  • I don’t drink tea or coffee.
  • My favourite books are The Book Thief by Markus Zusak, Finding Home by Cecilia Knapp (although that was a show first), The Fault in Our Stars by John Green, Sounds Like Me by Sara Bareilles, and the Tomorrow When The War Began series by John Marsden. Oh, and I really enjoyed Big Magic by Elizabeth Gilbert.
  • When I was twelve, I wrote a twenty thousand word story. It’s still on the hard drive of my computer.
  • I play guitar and piano, not super well but enough to write and accompany myself.
  • I love strawberry milkshakes.
  • My favourite colour totally depends on my mood but I will probably always love blue the most.
  • As a kid, I was obsessed with history, especially Ancient Egypt.
  • I really want to see the Northern Lights.
  • One of my all time favourite songs is ‘Wish You Were Here’ by Pink Floyd.
  • My favourite place in the UK is Norfolk and my favourite place outside the UK is Nashville, but I also loved Australia and New Zealand.
  • My favourite subjects at school were Maths, History, and Psychology.
  • I love Harry Potter and it was a huge part of my childhood. I read the last book in less than two days. My favourite book is Order of the Phoenix and my favourite film is probably Prisoner of Azkaban or Half Blood Prince. And whenever I had exams, I’d put them on in the background while I was revising. When I first signed up to Pottermore, I was sorted into Ravenclaw but I forgot the password and it was an old email address so I had to sign up again and I was sorted into Slytherin. And when I took an online quiz, it said I was equally all the houses so who knows.
  • Puns are my favourite type of humour.
  • I’ve never broken a bone, although I have cracked a rib.
  • My favourite movies are Cloud Atlas, Tomorrow When The War Began, I Robot, Nausicaa, and The Fault in Our Stars. And Arrival.
  • I love swimming.
  • I don’t think I’ve ever been in love but I have had my heart broken.
  • I’m fascinated by space and the universe.
  • I’m a big TV show person and I love Agents of Shield, Supergirl, Criminal Minds, Reign, Scott and Bailey, Fringe, Orphan Black, Nikita, Sanctuary, Stargate SG-1, Law and Order SVU, and Stalker. I have also enjoyed Doctor Who, Torchwood, Spooks, Grey’s Anatomy, Private Practice, and Glee.
  • I love the musical Wicked and my favourite Elphaba is Willemijn Verkaik.
  • I’m terrified of going to the dentist.
  • I’ve always loved animals and my dog and cat make me so, so happy.
  • I have a degree in Songwriting.
  • I was born in London.
  • Amanda Tapping is my hero and I’ve been lucky enough to meet her. She is the loveliest human being alive.
  • I listen to a lot of different music but my absolute favourites are Taylor Swift, Sara Bareilles, Against Me!, Halsey, OneRepublic, Maren Morris, Lauren Aquilina, and Natalie Hemby. There are lots more but that could take a while.

So now you know a bit more about me. Hopefully this gives a little context to all the other stuff I post.

Moving Forward and Looking Back

A few months ago, my therapist moved to a different office and as much as she tried to smooth the transition, it was hard. It didn’t feel real; I felt like I was just waiting to go back to the old office. But last week, for the first time, I walked into the new office and it felt normal. It felt right.

A part of me does still miss the old office. A lot happened there. So this is a little tribute to the old office and my armchair there. A lot of different versions of myself sat in that chair. Depressed me, joyful me, panicked me, hopeful me, hopeless me… That room saw a continuum. It was the setting for a lot of important conversations. I said out loud things I never in a million years thought I’d share. I processed an Autism diagnosis, I talked about the people I’ve lost, I played each new song I’d written, I cried when I was too depressed to talk, I talked about giving up, I talked about changing the world, I even took my cat and her kittens.

That place will always be special but I’m getting used to the new one. I’m learning how me and my emotions fit into that new space and I think they’re starting to.

The Big White Room

Since taking the Venlafaxine, I’ve felt different. I’ve felt a little bit lighter, mentally and emotionally. In some ways this is better but in some ways it’s not. Depression is such a heavy feeling but now I feel a bit like I’m floating away. I feel kind of lost, or like I’ve lost something really important. In a weird way, I miss feeling depressed. No, that’s not right. I don’t miss it, but I feel kind of lost without it. And feeling like that makes me very anxious.

Objectively I understand why I feel this way: I’ve spent a lot of time feeling depressed. It’s familiar. It’s certain. It’s a world where everything is in focus with clear and sharp edges. Now the edges are fuzzy. I feel like I don’t know who I am or what I’m doing. And emotionally, I’m finding that really hard to get my head around.

I know who I am when I’m depressed. Those emotions overwhelm me, they define me. Depression takes over my personality, or becomes the biggest part of it. It affects everything. It’s like depression takes up all that space. But now, there’s suddenly all this space that wasn’t there before. It feels a bit like when you stand in the middle of a really massive empty room. It’s quiet. It’s cold. It makes you feel so small and lonely. And if I look at myself in that big white room, I don’t know who I am. I don’t know if I’m optimistic or pessimistic. I don’t know if I’m a good person or a bad person. I don’t know if I’m loud or quiet. I know some little things but not the big things.

I do recognise the opportunity here, the opportunity for things to be different: to fill the room with new things. That thought is both thrilling and terrifying. But I’m not sure I’m there yet: I’m still pretty overwhelmed by how big this room is, how empty it is. I don’t know where to start.

I’ve thought a lot about identity, both mine and in general. It’s something I’ve struggled with for a long time and something I want to write more about. But I think your identity is made up of the things about you that don’t change, the fundamental aspects of your personality. I don’t know much about myself but I do know that I’m very sensitive. I’ve always been sensitive and I can’t see it ever changing. So I guess that’s a part of my identity.

I’m not sure my depression is gone but I’m not drowning in it anymore. And that’s scary. I’m so used to it that I’m not sure who I am without it. When I’m depressed, that big white room is so dark that I don’t know that all that space is there, so I don’t even know the room is that big. But now I know it’s there and it’s very compelling. I keep turning it over in my mind. As I said, I know who I am when I’m depressed. I want to know who I am when I’m not. So I guess that starts now. It’s a brave new world.

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One Woman With Autism

Ask anyone about Autism and they’ll most likely describe the stereotype: difficulty socializing, a ‘lack of empathy’, specific and focused interests. But, as with everything, it’s so much more complex than that, especially for girls and women with Autism. While there are various statistics on the ratio of boys to girls, it’s clear that there are many more girls and women with Autism than was originally thought. And because the diagnosis of Autism has always been based on the male presentation of Autism, it can be really difficult for girls and women to get diagnoses and support. I can’t speak to anyone else’s experience but I can speak to mine.

I was a shy kid. I was so shy, and so anxious, that I couldn’t be left at after-school clubs or activities. I was petrified and cried until my Mum would take me home. I was constantly told I was too sensitive, that I took things too personally, that I needed to grow a thicker skin. And that really upset me – but then I was being too sensitive, wasn’t I?

These issues continued through my childhood and into my teenage years. I was always anxious and strived for perfection in everything. I was a vigilant rule follower; I couldn’t, and still can’t, break a rule for anything. I was terrified of turning in homework late, convinced it was an unforgivable act. The one time I did forget a piece of homework (because I’d taken it out of my bag to check I’d packed it and then forgotten it in a panic about being late – another constant anxiety), I cried in a corridor and my hands shook when I told my teacher. It was fine, of course, but it didn’t help my anxiety. I was so scared of doing something wrong, of getting into trouble.

In addition to that, I never felt like I quite fitted in. Anywhere. I felt like I was stuck behind glass, separated from everyone else and unable to break through it. Everything seemed so much easier for everyone else; everything they seemed to do effortlessly took all of my energy, leaving me exhausted. I couldn’t understand why I just couldn’t cope as well as everyone around me. For some unknown reason, I couldn’t function as well as everyone else and that made me feel like I was broken. Despite all of this, no one clocked that there was a problem, not a doctor, not my family, not me.

What had always just been a feeling of not coping started to take over other areas of my life. I’d always done well as school, despite missing more than eighteen months when I struggled with an unidentified illness that caused debilitating fatigue. My lowest grade at GCSE was an A (although I was disappointed with not having achieved more A*s). I got to Sixth Form and everything changed. Suddenly every class, every test was a struggle. Learning and applying knowledge had always been something that had come easily to me, something I’d enjoyed, and all of a sudden, it had become so difficult and that was incredibly distressing. My anxiety got higher and higher and depression started to creep in. I was constantly exhausted and just getting through the day started to feel like an impossible task.

The turning point came when I failed an exam. I locked myself in a toilet stall and scratched at my arms over and over with a broken paper clip, desperate to feel anything other than this howling feeling of failure that came from somewhere deeper than I’d ever experienced. I don’t know how long I sat there and I don’t remember much of that day, but that was when my family and I started to realise that there was something really wrong.

A lot went into getting my diagnosis. I’ve lost count of all the doctors I’ve seen, the amount of times we left without any answers, the amount of books we read. I’ve been diagnosed with multiple mental health problems and tried a lot of different medications. I tried various therapies like CBT and EMDR. Nothing helped. But due to my Mum’s never ending commitment, I ended up at the Brighton and Hove Neurobehavioural Service and after several hours answering questions, I walked out with a diagnosis of Autism Spectrum Disorder. To start with, I was too exhausted by getting to that point to take it all in but slowly, everything started to make sense. All these disconnected pieces of my life and my personality began to click into place.

I’ve always felt emotions strongly. If something goes well, I feel like I’m bulletproof. If something goes badly, I can end up in a meltdown: crying, shaking, screaming, and often self-harming. Either that, or I go into shutdown where I retreat to my room and lie in the dark, unable to think or talk properly. Sometimes a meltdown leads to a shutdown and it can last for days, or even weeks.

I’m extremely sensitive. To a lot of things. A change of plan, loud noises, bright lights, unfamiliar people and places, all of those things increase my anxiety, making it difficult for me to function, to make decisions, to interact with people or the environment around me. Processing that information takes a lot of energy and I’m easily exhausted and overloaded. Too much sensory information, too many demands placed on me, the closer I get to a meltdown. It’s a fragile existence, like walking on a tightrope.

I’ve never had trouble with empathy, with ‘stepping into another’s shoes’. Or more accurately, I’ve never found that difficult to do. My struggles tend to be with the other extreme: I’ve been told I’m too empathetic. I frequently experience other people’s emotions as if they’re mine and with such strength that I feel completely overwhelmed. It’s strange and upsetting to, for example, feel grief for someone I didn’t know. It can feel like I’m intruding even though all I ever want to do is help because I know how strong those emotions can be. It’s incredibly difficult for me to see someone upset and not be able to do anything. It can also be very difficult to do something as simple as walk down the street. I just feel overwhelmed by how big everyone’s lives are, how much makes up a person: memories, favourite colours, foods they hate, things they want to happen, things they don’t want to happen, phone numbers they’ve forgotten, songs stuck in their heads. I could go on forever. And when I’m surrounded by people, I feel all of that pressing in on me. It makes it hard to breathe.

Socialising is difficult. Again, processing all the information around me takes a lot of energy: a person’s words, body language, tone, how other people are reacting, everything going on in the background. It’s hard work. It feels like everyone else has a rulebook that I never received and so I’ve had to learn how to be social. Where everyone else processes all this information automatically, I have to actively process it, which takes a lot of energy. So it’s not hard to imagine why I’m tired out very quickly by social situations. Of course many people don’t notice this and have no idea that I’m autistic. Even the visible signs go unnoticed, like my difficulty with eye contact. Aside from the fact that I have no idea how long you’re supposed to hold eye contact for or which eye you’re supposed to look at it, I also feel very vulnerable when someone is looking into my eyes, like they can tell what I’m thinking and feeling.

I do have my own specific interest: writing, in all forms, but my favourite is songwriting. I’ve read a bit about these focussed interests and apparently the interests in the female presentation of Autism tend to go under the radar because they can be similar to a neurotypical girl’s interests, like animals, TV shows, books, particular singers or music groups. It’s the intensity that’s different. I’ve never simply liked something; once I’m interested in something, nothing else matters. When I’m writing, I lose all sense of time. I recently spent ten hours working on a particular piece and only stopped because I noticed my hands shaking. When I looked up, it was dark and I realised that a whole day had passed and I hadn’t eaten. Writing, and writing songs, is everything to me. It’s the only thing I want to do, the only thing I want to do for the rest of my life. It’s hard though, because there’s a big part of me that feels like my life isn’t worth living if I’m not doing that one thing, if I’m not doing songwriting. The music industry is tough as hell so it’s terrifying to think like that. But that’s the truth.

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Of course there are other symptoms and this is just one presentation of Autism. As the specialist that diagnosed me said, we are the experts of our own Autism. But, in my experience, it’s really hard. And it’s made harder when there’s so little understanding around the way Autism affects girls and women. Life post-diagnosis is difficult but at least I know what I’m struggling with. I’m learning what helps and what doesn’t. Not knowing was awful. I felt like I was drowning, like I couldn’t even find the surface. And the years of asking for help and being turned away made it worse. The lack of awareness and understanding about how Autism affects girls and women has real consequences. The time it takes to get a diagnosis and the repeated invalidation causes problems of their own. The people supporting me now think that that was part of the reason I developed Borderline Personality Disorder, a mental health problem that involves instability of mood, behaviour, and self image. And I will never forget one particular doctor’s opinion, that maybe that’s just how life was going to be for me. That remains one of the most upsetting experiences of my life and years later, I’m still struggling to believe that I will ever be happy.

I am so lucky to have found the people who are supporting me now and I feel it because I know that without them, there’s a very real chance that I wouldn’t be here now. But there are so many people without this support. There needs to be more information, more awareness, more understanding of Autism in women. Too often it goes unidentified and the effects of that can be worse than the struggles caused by the Autism itself.