The Boy On The Bus

A few weeks ago, I went up to London to go to a concert with one of my friends. On the train, I’d started writing a new blog post (about getting a diagnosis – expect it soon!) and when I moved from the train to the bus, I kept going. Twenty minutes into my journey, a boy sat down next to me. I’m terrible at guessing ages but I think he was around twelve. I was in my own little world, typing furiously, when he asked me how long it had taken me to write “all those words.” It took me a moment to shift gears. I thought about it and said that I’d been writing for about an hour and a half. He looked half-amazed and half-appalled, which made me laugh. I told him that I like writing so it was fun for me. We talked for a few minutes before he asked me why I would want to put everything I’d written on the internet for people to see, which surprised me: I hadn’t thought he’d been reading over my shoulder.

I’ve been thinking a lot about that question. There are a lot of ways of answering it and I’ve been turning them over, trying to figure out which one is the best, which one represents my feelings in the truest sense. But maybe I need all of them to explain it: because I have this need to be honest, because I like to write, because I want to do something that matters, because I want to help people, because I’ll explode if I keep all of this inside me, because I want to be a part of changing how people see mental health, because I don’t want it to always be this hard… If I put something out into the world, maybe something will change. If I do nothing, I change nothing.

I’ve known some people who are very against giving people their hard earned secrets and while I agree with that in some areas (as much as I complained, doing the hard work in school subjects like Maths because the teacher withheld the shortcuts did mean I learnt more and retained it longer), I categorically don’t when it comes to mental health. If something I’ve learned can help someone else get a diagnosis or support with even slightly less struggle, then I will absolutely share it. Of course I resent how long it took and how painful it was to get to this point but that doesn’t mean I want someone else to go through the same thing. Imagine how quickly things would change if each person in the chain had it slightly easier than the person before. Feeling helpless is something I really struggle with and if there’s something I can do – anything I can do – to help, then I’ll do it. The damage that’s caused by the stigma and lack of understanding around mental health is irrefutable, in whatever form it takes. Not all suffering is equal but some people still seem to struggle with that, as if you have to go through certain things, certain examples of stigma or whatever, to be allowed to struggle. That’s just ridiculous to me. It’s like the “It’s just attention seeking,” response: if someone is asking for attention, maybe it’s because they need it. But that’s a rant for another day.

Getting back to the point… I have been so inspired by the positive, helpful things that I’ve seen people put out into the world and that’s what I want to do. That’s who I want to be.

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The Weird World of Anxiety Dreams

I have experienced anxiety dreams, in one form or another, for most of my life. I don’t know very much about the science behind dreaming but as I understand it, we tend to have anxiety dreams when we’re trying to cope with stressful stuff, or they are our brain’s way of telling us that we need to deal with something. Some of the common ones include losing something important, finding yourself naked in public, being chased, and scenarios involving the end of the world. I have had all of these at one point or another so I thought I’d write down the ones that stick out most in my mind and put them out into the world. Maybe some of you guys can relate.

The first anxiety dream I remember having was about being trapped in a car. The car was sitting at the top of a hill, on a street I knew well, and then it suddenly began to roll down towards the busy main road. I was stuck inside, panicking and unable to make it stop. I always woke up before I reached the bottom but I can still feeling that suffocating fear. I think these started when I was about five or six and I had them many times for several years. Then, when I was a teenager, they changed slightly. Instead of being stuck in a moving car, I was suddenly expected to drive somewhere without knowing how, without ever having had a lesson. I don’t know why but the expectation that I could was definitely there. I would get in the car and attempt to drive and while I was initially successful, it was just a matter of time before something went wrong. This is apparently a very common anxiety dream, which isn’t surprising given that most of us hate feeling out of control.

My most common recurring dream is one where my teeth start falling out. There are a couple of different variations of this: sometimes my teeth just become wobbly and slowly fall out one by one, and sometimes they just disintegrate in my mouth and I’m spitting out fragments of enamel. They’re incredibly vivid and I’m always convinced that they’re real. I wake up breathless and disorientated. I have no idea where this one comes from or whether it means anything. I don’t subscribe to the theory that when you dream, specific things have specific meanings, but it seems pretty likely that feeling out of control in a dream links to feeling out of control in some part of your life. I still don’t know what teeth are supposed to represent though.

There’s another one that I’ve only started having recently. I’m walking into college, heading to a Maths lesson when I remember that I haven’t been to a Maths lesson in months and therefore will be expected to hand in months of late homework which I do not have. I could just not go but the exams are getting ever closer and I need to learn it all. My anxiety is just starting to spiral when I wake up and it takes me a while to untangle myself from it. If I were going to guess the meaning, I’d say it had something to do with my fear of falling behind and not being good enough. And getting into trouble. But that’s not a big leap to make.

I don’t know how anxiety dreams fit in to the picture when you live with an anxiety disorder, when you live with significant levels of anxiety every single day. Does it mean that the level of anxiety necessary to trigger the dreams is just higher? Maybe every dream we have is an anxiety dream but we only remember a fraction of them… I don’t know what the answers are. But I thought I’d put my experience out there and see if anyone relates to it. If any of you have had anxiety dreams, I’d love to hear how similar or different they are to mine.

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To Gig Or Not To Gig

What with the medication and the side effects and the day-to-day consequences of my specific Venn diagram of issues, I have been feeling incredibly unwell over the last several months. It’s been really tough: I’ve been dealing with nausea, dizziness, weakness, shortness of breath, shakiness, and so on. Having spent so much time and effort convincing people that a mental illness is actually an illness, that it isn’t less important just because the symptoms are inside your head, I think it’s easy to forget that these problems also have physical symptoms. I’m guilty of it too and I’m not very good at accepting that reality. But I’ve had to of late. Or, at the very least, try not to give myself such a hard time over it.

But this week I had my first gig in a really long time and I was going to do it, come hell or high water. The hardest thing has been not being able to do the things I love the most, namely singing and songwriting. That makes me a kind of stir crazy that I’m not sure I can put into words. So I did my absolute best to make sure I was ready, in both the health and music sense, and I thought I’d share some of the things I did in case they’re useful to anyone else.

Make sure your expectations are realistic – In the last six months, I’ve been offered a couple of gigs that I knew I just couldn’t do, regardless of how much I wanted to do them. I just wasn’t well enough. But this one was perfect: a short set, a relaxed atmosphere, lovely and supportive people… It was a really good opportunity to do this thing that I love so much without too great a cost to myself.

If it feels right, let those in charge know – I don’t think this is always necessary but when you know it could affect your performance, it can be a good move. It’s my default position to be open and honest and because I write songs about my experiences with mental health and Autism, they find out soon enough anyway but I’m also aware that people can jump to incorrect conclusions when they hear the word ‘Autism.’ So there are pros and cons but it’s something to consider.

Practice in small doses – There’s no getting away from the fact that you need to practice to be ready to perform well at anything. But it doesn’t have to be a huge, daunting black cloud that swallows up your day. I hadn’t been doing much consistent practice because I just felt so awful but I managed to build in fifteen minutes a day. It felt pathetic given that I used to be able to sing and play for hours but I’m trying to just acknowledge the thought and then put it aside. Even fifteen minutes was leaving me shaky but it gave me back some of my confidence and even though I don’t have another gig for a while, I am going to try and keep to this. It gives me more than it takes away.

Physically prepare your body – Make sure you’ve slept enough, eaten enough, and drunk enough water. These can be hard; I’ve struggled with all of them. But try to remember why you’re forcing yourself through it and do your best. It puts you in the best possible position to perform well which is, after all, the goal. Hopefully that motivation is enough.

Do whatever it is that gives you a boost and if you can’t do that, avoid the things that bring you down – I usually listen to music to inspire and energize me before a gig. They’re not necessarily happy songs but they are all high energy or high intensity. That helps me get into the right mindset to perform and that usually overrides whatever I’m dealing with physically.

If you need to stop, stop – I’ve been to multiple gigs where acts have had to call it quits mid set because of a terrible cold or whatever and every single time, the only thing anyone says is how impressed they are that the person got as far as they did. That may not always be the case but would it be better to push through and end up face planting onto the floor when the dizziness turned into fainting? No, it would not. Do what you can for as long as you can and then gracefully retreat.

Now I can’t prove that these things helped but I know they didn’t hurt. The gig went really well and it felt so good to be performing again. A couple of days later and I’m still tired and shaky but if that’s the price, I’m more than happy to pay it. For the first time in weeks, I feel like I’m in sync with my life; my anxiety has dissipated and I actually feel calm. That’s not something I can say very often.

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When You Feel ‘Too Much’

As I’ve said before, I struggle with how powerful my emotions can be. When I’m happy, I feel like every cell in my body is glowing; when I’m upset, it feels like my chest is collapsing; when I’m angry, I feel like I could destroy buildings, and when I love someone, if I could take on all their pain myself, I would do it in a heartbeat. These feelings can completely overwhelm me, making it impossible to think rationally and I’m often left absolutely exhausted afterwards. Occasions like these are closely linked with my autistic meltdowns but they also do occur separately. Over the last couple of years, I’ve gotten better at managing this so I thought I’d write down some of the ways I do this (of course there are still times when something emotionally difficult just comes out of nowhere but we can’t control everything so we work on the things we can).

Allow myself to feel everything – I think it’s so important to actively feel and process your emotions. Ignoring my emotions does me no good. So I let myself feel them and let them settle and usually then, I can feel what the right thing to do is.

Prepare for events I know will be emotional – When I know an event is going to be stressful or upsetting or emotional, I seriously think about how important it is that I attend. If I don’t need to go and I can see that it is going to negatively affect me, I do consider not going. There’s nothing wrong with protecting your mental and emotional health. If I either need to go or think it’s the right thing to go, I make sure that I’m prepared for it. I make sure I have everything I need, I plan the elements that I can (like travel arrangements) to minimise stress, and I do some of the other things on this list. I also factor in the number of people. Big crowds of people can really stress me out so it is something I consider when deciding whether or not to do something and then how I handle it.

Create a safety net – Again, when I know something (an event or period of time) is going to be stressful, I take certain precautions. I’ll arrange an escape plan ahead of time in case I need it or I’ll arrange to have someone I know with me. Most of the time, I’m fine but that’s usually because I know I’ve made these plans and so I’m not worrying about what will happen if something goes wrong.

Build in time to recover – I am easily exhausted, especially at the moment, so I allocate time before and after an event to make sure that I’m as rested as I can be before it and then to give me recovery time after. I struggle with the reality of this: I get very frustrated about tiring so quickly and wish I could jump from one event to another like many people I know can. But even when I’m raging and swearing about this, I do it because I know objectively that I need it.

Writing or journaling – I’ve written about this before but I’m such a believer in writing down your emotions. For me, it gives me somewhere to put them so I don’t have to carry them around with me. I can leave them where they are and move on. It also makes them more manageable because I’ve put words to them; they’re no longer an intangible mess overwhelming me.

Therapy – Talking about how you feel is invaluable and having someone who is professionally trained, someone outside of it all who can look at what’s happening objectively is even better. I’ve been going to therapy for three years now (three years today in fact!) and having that safe space where I can talk about anything is so important to me. I wouldn’t be where I am now without it. I might not be alive without it.

Specific amounts of medication – Certain medications I have taken have had a little leeway about them and my psychiatrist trusts me to use my judgement with them. For example, when I know I’m going to need as much energy as I can get or have really needed some sleep to recover from something, I have increased my sleeping medication temporarily to make sure that I sleep well. Of course, this is something you only do with the guidance of your healthcare professional.

It does still happen. I do still get completely overwhelmed by how I feel but I am better at managing it. I guess these things just make the experience easier on me and everyone else, and less stressful than they were before. Despite all of this though, the strength of my emotions is something I really value about myself. Everything matters. I care with everything in me. It’s hard but ultimately, I wouldn’t want to be any different. Life is bigger this way.

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Stepping Back in Time

Sometimes I wonder about what it would be like if I could go back to secondary school and to sixth form but with everything I know now. Obviously it would help with the lessons and exams but what I’ve learned about myself would’ve completely changed my experience of school. I’m such a different person at twenty-three than I was at sixteen or eighteen (as I would hope we all are). Throw in the ups and downs of my mental health and I’d say I’ve learned a lot in those years. I’ve been thinking about this on and off for a while now so I thought I’d write down some of these thoughts and compile them here:

On Choosing Subjects To Study – I am fascinated by what my life would look like if I’d known I was Autistic, if I’d known about my mental health challenges, and this is a good example of that. Because of the identity issues that often come with BPD, choosing the subjects to study at sixth form was distressing. How was I supposed to know what I wanted to study when I didn’t know who I wanted to be, who I was even? I want to write about identity a lot more but it’s such a big subject that I haven’t managed to tackle it yet. I promise I will. In this case, I knew I liked Psychology and I knew I liked Maths but I wasn’t sure what to pick for the final two options so I did what I always do when faced with a question about myself that I don’t know how to answer: I filled the empty space with real people and fictional characters that I liked and admired, people that embodied the things I wanted to be. That was how I ended up choosing History and Physics. I don’t regret those choices but now that I know that that happens, I approach things differently.

On Standing Up For Myself – I was fortunate not to go through any extended periods of bullying during my school years. There were a couple of incidents but they never went on for very long; they either got bored of me ignoring them or I pushed back which made them stop. But I had several teachers who didn’t behave particularly well: shouting at the class, humiliating us, telling us we were stupid, etc. Back then, I just kept my head down; I didn’t want to draw any attention to myself. I was terrified of getting in trouble and standing up to an authority figure was something I just didn’t know how to do. I was just trying to get through it; I didn’t know that I didn’t deserve to be treated like that, that I could push back against it. Were I in that situation now, I wouldn’t let someone treat me that way, let alone anyone else. If it wasn’t abusive, it was a downright unacceptable way to treat the children they were responsible for.

On Trying To Fit In – When I was younger, especially in my early teenage years, I would look at the girls in my classes and in my year group and wish that I could be one of them. They were all so pretty and seemed to have everything and had been friends all their lives. I’d missed a lot of school due to illness and there was some hard stuff going on at home and my one good friend had just moved to the US. I felt very alone. I wanted to belong somewhere. I went on to find some amazing friends – many of whom I’m still friends with now – but the feeling of belonging is a hard one and one that I guess I’m still learning how to handle. But if I was going to secondary school all over again, that isn’t something I’d worry about. I think that the need to belong isn’t so urgent when you feel like you belong to yourself. I’m not all the way there yet, but further down that road than I was at sixteen.

On Blending In – It wasn’t until I looked back that I realised I was trying to be invisible. I didn’t put my hand up when I knew the answer, I hated any activity that required me to be at the front of the class, and I did everything I could to avoid drawing attention to myself. Even the way I sat – hunched over, trying to make myself smaller – reflected that. And yet I was desperate not to be forgotten. Apparently teenage me was an oxymoron. But no, I get it: I didn’t know who I was and I didn’t want people to know me, or remember me, as something I wasn’t. And worse case scenario, I embarrass myself and that be what people associate with me forever. But as I started to know myself, this behaviour started to change. Finding something that I loved and something that made me feel like I was where I was supposed to be, i.e. songwriting, really helped with that too. In a way, finding that gave me permission to exist, to take up space, and that gave me confidence. These days, I can look at myself and feel so unsure about everything but all I have to do is look back to know how far I’ve come.

The last couple of weeks have been hard, mental health and medication wise, but I’m hopeful that that will start to ease and then I can spend more time and energy on here. Thank you, as always, for reading.

Holding On And Letting Go

A while back, a friend shared this article on Facebook and I couldn’t not share it here. I’m currently in the process of going through everything I own in preparation to move house and so I’m coming across a lot of things that I have previously loved. I’m being constantly faced with the decision to hold onto something or to let it go. So I resonated with this piece very strongly.

I thoroughly recommend reading it but here’s a summary. The author describes feeling sympathy for inanimate objects, from “the guitar that doesn’t get played anymore” to “the once loved camera that has now been displaced by a newer one.” And the thought of an object being discarded causes great anxiety and sadness.

I’ve struggled with this all my life. As a child, all my toys had personalities and thoughts and emotions but that hasn’t faded as I’ve grown up even though I no longer play with them. They’re all still in my cupboard, neatly stored in boxes and bags. I feel guilty about that, that it must be uncomfortable and claustrophobic, but it’s better than throwing them away. That would be the ultimate betrayal. Imagining them in a bin or landfill fills me with such overwhelming anxiety and guilt that I can’t think properly. But it’s not just toys; it’s everything. I have a draw full of my old phones (how can I go from carrying them around twenty four seven to throwing them away?), a box of broken Christmas ornaments (it would be so callous to throw them out just because they’re not perfect anymore), my old school jumper, and so on and so on and so on.

Throwing things away is hard for me. I have this anxiety about letting things go, like I’ll lose parts of myself. Anything that has some meaning to me, I have to keep. It’s similar to how I write everything down and take a million photos. It goes with my difficulties around identity, a big part of BPD, and feeling like I have no idea who I really am. So I’m probably assigning aspects of my identity to physical objects in response to that. It certainly doesn’t help with all of this. And I wouldn’t be surprised if there’s a link to the difficulty I have in managing the strength of my emotions. I’ve talked about this before: how strongly I feel emotions and how I sometimes feel other people’s emotions. I’d always assumed that it was another facet of that.

The article discusses some other potential causes:

“There is some evidence to suggest that OCD and Synaesthesia are possible causes. Put simply, Synaesthesia is a neurological condition where the senses are confused. So someone with it, may smell a taste, or see a particular colour when thinking of a specific number. Some people have a form of Synaesthesia known as Personification. This is when a personality or emotion is attributed to an object. It would appear that there is a higher tendency for those on the autistic spectrum to have Synaesthesia in one form or another.”

The link to Synaesthesia is an interesting one. I do have some Synaesthesia-like experiences: with some sounds, I experience specific tastes or sounds. The sound of 7 chords leaves a metallic taste in my mouth so strong that I avoid those chords as much as possible and working on the production of my songs can be a bit of a minefield: high frequencies, like cymbals, are yellow while lower frequencies are dark colours (different depending on the instrument) and the colours in the song need to be balanced for me to be happy with them. It’s hard work and often leaves me with a debilitating headache.

I don’t know what the answer is or whether there is one. But I think the more we talk about this stuff and the more normal it becomes, the less we struggle against it. That takes up so much energy and emotion when living with these things is hard enough. That’s kind of why I started writing all of this stuff down, to feel less alone and hopefully make other people feel less alone too.

(Left: me and my toys when I was about eleven. Right: confetti that I kept from an amazing concert.)

Stop Pulling My Hair Out (Attempt 2.1)

My first battle with hair pulling ended after about nine months when somehow, I managed to will myself to stop pulling. Finding my first bald patch, about the size of a 2p coin, had seriously freaked me out and so I’d been determined to stop. The first few days were absolute hell. It was like my fingers were magnetically attracted to my head and the longer I didn’t pull, the stronger it became. Have you ever held two magnets close enough that you can feel the pull between them? It was a bit like that but all through my body. I won’t lie, the thought of shutting my fingers in a door so that I physically wouldn’t be able to do it did occur to me more than once. I couldn’t concentrate on anything; my whole brain was focussed on not pulling out my hair. It becomes a habit and you do it without thinking about it so when you try to stop, you have to think about not doing it all the time, just in case you slip up. And then the need to do it just overwhelms everything.

I’m not sure that feeling exactly faded but I learned to compartmentalize: I managed to cram it into a box and think around it. That sounds impossible now. When I couldn’t do that, I tied my hair up in a ponytail and allowed myself to pull the hair out of that, the resistance from the elastic band fulfilling some of that need. But I wasn’t allowed to pull it out. It wasn’t perfect but it did keep me from relapsing. For a while, that is. I didn’t pull for over a year but then I started again. I’m not even sure why, if I’m honest. I think I was tired. I was tired of fighting it. The urge to pull hadn’t gone anywhere and suddenly I was back in that vicious cycle, pulling and pulling and pulling.

That was about eighteen months ago. I’ve tried all my old tricks: wearing a hat, playing with fidget toys, fiddling with my spinner ring. But so far nothing has really worked. The hat worked best but the anxiety of not being able to get to my hair almost sent me into a meltdown and at the moment, pulling out my hair is the lesser of those two evils. I guess it’s not surprising, considering the amount of anxiety I’ve been dealing with recently.

In the last couple of weeks, I tried (again, hence the 2.1) to stop. In some ways, I was lucky the first time round: when I was pulling, I tended to pull from a point that was hidden by my hair most of the time. I mean, it still sucked but at least I didn’t have to deal with anyone else’s reactions. But this time, I’m pulling from all over my head: my fringe, my parting, my hairline… Literally everywhere. I’m triggered by a change of texture in my hair, from smooth to almost crunchy (if you have any advice on ‘fixing’ this, please let me know!) and that’s not specific to one area. And that means it’s much more likely to be noticed. Maybe it’s vain but that’s my motivation for stopping and I figure any motivation is good motivation.

So last week I tried to redirect my pulling away from my parting and my fringe. I was ‘allowed’ to pull from other areas but not from those two. I thought I was doing okay until I realised that I was chewing the inside of my cheek, with the effort or the redirected urge I don’t know. I stopped as soon as I realised, although not before it had bled quite a bit. Again, I thought it was all okay until a day or so later when the inside of my cheek started to hurt. I figured it was just healing but within a few hours, the pain was blinding. I’m writing this out and thinking, “This is ridiculous. You’re exaggerating. It was just a little gash inside your cheek.” I’ve always been sensitive to pain and easily overwhelmed by it but I don’t think that matters. In all seriousness, it was so bad that it made me cry (which only made it worse because, obviously, you move your mouth when you cry). It was that strong. For three days, it was so bad that I wasn’t able to do anything. I was barely able to eat, or drink, or talk. I almost cancelled an event I was looking forward to because the thought of having to talk and smile all evening was unthinkable. I woke up on that morning feeling a little bit better so I did decide to go but it was still very painful.

A few days on and I’m mostly pain free. That was not something I’d expected when I made the decision to try this again and it was really upsetting. I’m not sure when or what I’ll try next but I’m sure I’ll find something.

Conclusion: Failure.

Lesson learned: Be careful of where you redirect the urge and/or the effect that your attempt is having.