Getting Back To Gigging

Over the last twelve months, I’ve barely been performing at all. I just haven’t been up to it. My depression has been completely overwhelming and has only been compounded by trying to find a new antidepressant, what with all the side effects: at one of the few gigs I have done, I was getting so dizzy that I couldn’t stand up long enough to play three songs. So it’s been a struggle. But in the last few weeks, I’ve had two gigs – and two gigs that I really wanted to do – and so I’ve had to figure out how to do everything that that involves while still struggling the way I am. It was hard work and the heat didn’t help but I managed to do them and do them reasonably well all things considered.

The first performance was part of Brighton Soup. For those of you who haven’t heard of it, it’s a community event where four people (or organisations) pitch their ideas to improve Brighton and Hove. Everyone votes and the pitch with the most votes gets the money from the ticket sales to make their idea a reality. They invited me to play at their next event and it turned out to be such a special experience. I was so moved by all of the pitches and the general spirit in the room.

I was really anxious about performing – more than I have been in a long time – and my hands were actually shaking. I find that very disconcerting, not being in control of my body. I took a deep breath and tried to imagine it flowing through my body, imagine everything settling. That helped a bit, as did trying to really feel every line of each song as I sang it.

Before this unplanned break from performing, I felt fairly confident on stage and although I did get nervous, it all but disappeared the moment I started singing. It took longer this time but, by the time I finished my four songs, I felt like myself again. I’m not sure I could explain the process – from shaking mess to confident performer – but I could feel it happening and that, in itself, helped with my anxiety.

The second performance was at Disability Pride in Brighton. I got to play last year (despite technical difficulties, it’s still one of my favourite performing experiences) and I was SO excited to get to play again. It’s such a special event.

It turned out to be a pretty challenging gig. The acoustic stage was inside an inflatable structure, which needed a generator to remain inflated. The generator was so loud that I couldn’t hear myself at all. I was reassured by multiple people that it sounded great from the audience’s perspective, but I still really struggled with it. Had this happened a year ago when I was performing fairly regularly, it wouldn’t have bothered me as much because the more you perform, the more it gets into your muscle memory. So, if you’re struggling to hear yourself, you can rely on other parts of your body to judge how the performance is going: how your voice feels in your throat, for example. But during this ‘break’ from performing, that muscle memory has faded and so I was relying heavily on hearing myself. So it wasn’t as easy as it could’ve been. Plus it was stiflingly hot and I’ve always struggled with heat.

But having said all of that, it was one of the most supportive and most generous audiences I’ve ever played for and I felt so, so lucky to be there. I wish I could’ve given them a better performance. My sincerest thanks to everyone who made the event possible; I literally can’t put into words (I’ve been staring at the computer screen for an hour) how much it means to me.

The last few weeks have been a bit of a rollercoaster, but one that I’m really grateful for. I’d sort of forgotten how much I love performing but this has really helped to remind me.

 

A Holiday Bubble

From the age of about two years old, I’ve been going to a little town in Norfolk almost every year on holiday. While I was in school, we – me, my parents, and our dog – would go during the October half term but in recent years, we’ve been going in the early summer, before the schools break up. We stay in a caravan less than a ten-minute walk from a stunning sandy beach and I absolutely love it.

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Some people find it strange that we always go back to the same place but as far as I can tell, there are two basic types of holidays: going to explore and going to relax. Both have their pros and cons. This is definitely a relaxation holiday. It’s familiar and calm and beautiful. It’s a bubble away from reality where I can just be, in a way I can’t at home. And, of course, familiarity and Autism go together like fish and chips. We also ate a lot of fish and chips…

I’ve been back from Norfolk a few days and I just really wanted to write about it. After having had so much change with the house move, the changing of medications, and the decision to keep my cat’s kittens, it was really nice to be somewhere so familiar and safe. And as much as I love the cats, I really enjoyed having some dedicated dog time with Lucky. Because he’s now so arthritic, we have to be careful to not over walk him (his enthusiasm far exceeds his physical ability so he’s not much help there) but we manage a couple of trips to the beach, which he loved. He can’t really run anymore but there was a fair amount of skipping, one sure-fire way to know he’s enjoying himself. It’s very cute.

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The beaches in Norfolk are just beautiful. The closest beach, the one we jokingly call ‘our beach,’ is particularly close to my heart. Every year, I step onto that beach and everything just clicks into place. It’s subtle but I suddenly feel like my head’s a little clearer, like I can breathe more easily. Something inside me settles. It’s like I leave a little piece of myself there, that I miss all year round, and then, when I get back, it’s an overwhelming relief. I’ve spent some glorious evenings on that beach.

It was ridiculously hot all week so I spent a lot of time inside with all the windows and doors open. I’m really not good with heat. It’s something I’ve heard from quite a few other people with Autism; I wouldn’t be surprised if there’s a link, given the hypersensitivity that often comes as part of being autistic. Anyway. It gave me the opportunity to do a lot of writing and catch up a bit with my diary (if you’ve read this post, you’ll know that my writing can be quite compulsive). That felt really good. I also rewatched some of my favourite films and played chess. The latter is something I haven’t had the concentration to do for months so that felt like a victory in itself, much more exciting than actually winning at chess.

Being there doesn’t eradicate my anxiety entirely but it does a pretty good job of dampening it. Sometimes anxiety feels like this constant vibration that I can’t stop, can’t take a break from. But in Norfolk I can. I still get anxious about specific things but that relentless vibration momentarily ceases. And that’s such a relief.

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Travelling As An Autistic Person

Travelling is hard work for everybody. It’s exhausting and stressful and frustrating. But add in sensory issues or anxiety or whatever it is you struggle with and it can be a traumatic experience. Since we are now in the summer holidays and prime travelling time, I thought I’d put together some things that I found helpful to do as an autistic person who struggles with anxiety. I would like to point out (again) that there is a maddening lack of resources (and even simple testimony) for or from the point of view of autistic people. I spent hours searching for something but there was next to nothing; all the advice was for parents of young autistic children. Of course that information is important but it’s very demoralising to an autistic adult – essentially being compared to a child – especially one who was diagnosed late and has had to work so hard, often unaided, to manage their difficulties.

PLAN AHEAD – I know, this is my advice for everything, but it really does help. Struggling with unexpected change is a common trait in Autism and while planning can’t prevent all of those changes, it can make a huge difference. It can also give you a confidence boost, knowing that your actions have prevented a certain amount of anxiety.

SPEAK TO A TRAVEL AGENT – Being able to hand some of the responsibility off to someone else can be really helpful, especially if you have limited energy. You have to prioritise the tasks and if there are people who can help, that is a valuable resource. These people are also more likely to know the ins and outs of booking flights and accommodations etc and will therefore be more equipped to help you get what you need and want to get the most out of your trip.

CHOOSE YOUR ACCOMODATION CAREFULLY – Having somewhere where you can have time out and recharge is so important when travelling. We all have different sensory needs and different things we can tolerate so choosing a place to stay is really important. For example, staying with other people (people I don’t know) causes me a lot of anxiety so when we look through Airbnb, we look at places that allow us to be the sole inhabitants. It won’t be the same for everyone but if you can identify what you need, you can hopefully find somewhere to stay that can be a restful place rather than a stressful one.

WRITE A LIST OF EVERYTHING YOU’LL NEED AND HAVE SOMEONE CHECK IT – Having a list makes packing so much easier and having someone check it for you just reduces the chances of making a stupid mistake like forgetting your pyjamas. Because that really isn’t something you need to deal with when you arrive wherever you’re going. Also make sure that you’ve got any medications or medical equipment that you need because those can be particularly difficult to get hold of, especially if you’re in another country.

PACK AN EMERGENCY KIT IN YOUR CARRY ON BAGGAGE – On the off chance that your bags get lost along the way, pack a change of clothes, some medication, etc in your carry on bag so that you can at least get up the next day and work out a solution.

BRING YOUR OWN FOOD – You’d need to check with your airline but there are certain foods that you can take in your suitcase that won’t cause you any problems while travelling. That means that, at the very least, you’ll have something to eat when you get to your destination. But in my case, it gave me a staple food that I knew I could eat in case I couldn’t find anything I could tolerate. It took away some of the anxiety, for which I was grateful.

PREPARE SPECIFICALLY FOR THE FLIGHT – Apparently, we’re flying in this hypothetical. Many people have fears associated with flying and while I don’t have any magic words of wisdom there, there are a couple of tricks to make it slightly less difficult, especially if you have sensory issues. Take sweets to suck on and relieve the pressure in your ears. Wearing a mask over your face can help if you’re worried about bad reactions to everyone’s germs in one confined space, as well as chemicals from perfumes etc. I’ve also found that a playlist of familiar music helps with the constant noise of flying. And wearing comfortable clothes: you’re most likely gonna look awful when you get there anyway so why bother with anything more than a T-shirt and leggings.

BUILD IN TIME OUT AND DON’T FEEL GUILTY FOR IT – Easier said than done, I know but burning yourself out in the first couple of days doesn’t make for a good trip. So try to take breaks between things and listen to your body: if you need to rest, rest. It will make the whole trip more enjoyable and worthwhile if you do.

As of now, I think that’s all I’ve got. But if you guys have any tips that you’ve found helpful, please let me know!

When You Don’t Want To Feel Better

I have now been clinically depressed for thirteen months. I’ve been living with depression a lot longer than that but, in May of last year, everything spiralled and I was diagnosed with clinical depression for the second time. So I know my depression pretty well now and there are a few differences between those two states. One is the presence of hope: while living with depression, it’s a constant battle between my depression and the hope that things will change and get better. But sometimes that hope just disappears and the depression takes over. That’s when things start to get really bad. Another difference is the ability to cope; when my depression is particularly bad, I feel completely overwhelmed on a daily basis and devastated on a weekly one. I feel like one more impact and I’ll never recover.

I’ve been in what feels like the lowest place I’ve ever been for the past month. I wish I could describe it but I don’t know if I can; I don’t know if there are words that accurately capture that feeling. It’s like that feeling after you’ve had blood taken, after they’ve pulled the needle out, and your arm hurts in a way you’ve never really felt before but it’s everywhere. It’s like you’re drowning inside your own body. It’s like having a black hole in your chest that’s sucking everything in, leaving you aching and empty. It’s like all of those things and none of them at the same time.

But recently there’s been a slight shift. It’s so slight that saying ‘I feel better,’ feels like a gross over exaggeration and fills me with anxiety. But it is there and that’s really frightening to me. I’ve spent weeks feeling like I’m suffocating, like I can’t possibly survive feeling like this for another minute, but now that that’s not the case, I’m honestly terrified. As miserable as the depression is, ‘better’ is unknown. And scary. As much as I wanted to feel anything else, being depressed is somehow safe and… comforting is the wrong word, but hopefully you know what I mean. It’s clear. I know where the edges are, how it feels. In some ways, being depressed is easier because it’s familiar. I know it sounds weird but it’s like nothing can hurt me because everything hurts already. So, if I step out of that, it opens me up to really feeling hurt again and that is really, really scary.

But what if I’m not ready? Being depressed takes up so much space within me. What if I’m not ready to process everything that I’d have to if that space wasn’t being monopolised by the depression, if it was being filled with more life than I’ve had up until now? That’s overwhelming. I feel so raw and so fragile. What if I’m not strong enough? What if something happens and suddenly I’m crashing down even lower than before? I’m not sure I could survive that. I feel like a fractured windowpane that will shatter if it takes one more hit.

I feel like a little like I’m being dragged into ‘better’ regardless of how I actually feel. I do feel better physically: the brain fog has receded significantly, I don’t feel so numb, to the world and my own emotions, and so on. I’ve even had flashes of future plans, like going to the gym and learning how to bake something new; I haven’t had thoughts like that in a long time. But despite all of that, I don’t feel better mentally so it’s confusing and overwhelming and stressful. I know that that kind of change takes time, conscious processing, and most likely therapy, but that’s hard to remember when I’m feeling so overwhelmed by anxiety.

And part of that anxiety is this suffocating feeling that something bad is about to happen. This is something I’ve struggled with for years (it’s on my list to write about) and although I know it’s completely irrational, it doesn’t feel that way when I’m in it. It feels completely logical. A good thing happened and so a bad thing must happen to balance it out. I dared to want more than I already had and so the universe must punish me for it. When I write it out, I can see how ridiculous it is but it’s how I FEEL. It’s like the instinct that you’re in danger: it’s that strong. You can’t just ignore it. I want to write more about this in the future because it’s important and complicated and distressing.

This is all really overwhelming and scary. And it’s really confusing to suddenly feel like I don’t want to get into a better space after desperately wanting it for so long. It’s really weird when your physical emotions and your mental emotions don’t match, if that makes any sense. I don’t really feel like I understand it so I end up feeling like I don’t want to tell other people because they might assume that it’s as simple as feeling better and therefore expect more from me, more than I’m capable or feel capable of giving. This is a learning curve and I seem to be moving through it very quickly but also very slowly. It’s a mess. I’m a mess. Thank you for sticking with me through this very ramble-y description of it.

Autistic and Afraid of the Dentist

The title says it all, really.

As a kid, I was always really anxious about going to the dentist. I mean, it’s a person poking around inside your mouth with sharp instruments and criticising you while you’re completely unable to respond, clench your teeth, or even swallow. If that isn’t a nightmare, I don’t know what is. It was always a traumatic experience that ended in tears. So – of course – I needed braces and in order to get braces, I had to have dental surgery to remove two teeth and attach a little chain to another to gradually pull it into it’s correct place. That was attached to the braces, which was already a painful experience in itself. It’s also worth pointing out that during that surgery, another tooth was damaged and I’ve had trouble with it ever since. I’d stress about the next appointment for months and every check up was a distressing, exhausting ordeal. So, with all of that, I was pretty anti-dentist.

The Autism diagnosis changed things: people started to understand why it was such a big deal for me and new options became available. At the time, I’d been seeing a friend of my Mum’s who was a dentist and going to her practice, just to try and get used to the whole thing. But, as she worked privately, it really wasn’t a long-term plan and I was dreading the moment we’d have to find a new person and start all over again. But when we told her about the diagnosis, she told us about a specialist dental clinic, one that deals with all sorts of disabilities, and said that she would refer me.

Going to this place was an entirely different experience for me. The dentist and dental nurse were absolutely lovely and I’ve had the two of them ever since the first appointment. It never feels rushed and in that first appointment, we spent most of it talking, some about my dental history but mostly about me: my music, my pets, and so on. I almost forgot that I was at the dentist. At the end, she spent about a minute looking at my teeth (with only the mirror and nothing pointy) and then we were done. It had been okay; I could relax.

Over the following appointments, we took baby steps. She introduced me to all the instruments and let me touch them so I knew what they’d feel like. Then she’d use them on my teeth, one by one, explaining what she was doing and giving me lots of opportunities to stop. It was such a big deal to have people listen to my anxieties and take me seriously. I was and I am so grateful to them.

It’s been slow going with many freak outs along the way. The need for a filling threw a spanner in the works because I really wasn’t ready for all of that. But the crisis was averted when they referred me for a general anaesthetic – just as well as I ended up needing a tooth removed. Obviously, general anaesthetics aren’t a long-term solution to dentist anxiety but given the progress I’d been making, we all decided that it was the right choice. And once that was over, we got back on track.

I’ve been going there for two and a half years now and my appointment last week was definitely a milestone. I let the dentist clean and polish all of my teeth all in one go; no breaks, no anaesthesia, no nothing. It was all me. That is HUGE! I haven’t been able to do that in years and apart from the three-hour nap I needed afterwards, I feel pretty good about it. It wasn’t fun but my anxiety didn’t get to an unmanageable level and I got through it; I’m really proud of that. Really, really proud.

There’s a long way left to go but it actually feels like, one day, I’ll get to a place where I can go to the dentist and have a filling and it not be that big of a deal. Imagine that?! What a thought! I am so, so grateful to my dentist and dental nurse for taking such good care of me.

Anyway, I just wanted to make this post because I know that there are a lot of people – with Autism, with mental health problems – who really struggle with going to the dentist in the same way I do, and this route isn’t a well known one. But there are options other than just forcing yourself to go. So, if the dentist is a problem for you, please talk to your dentist, your doctor, and consult google. It shouldn’t be so hard and it doesn’t have to be.

Mental Health Awareness Week 2018

(Blog Note: I was hoping to post this yesterday but I just had to take a break from everything so it’s a day late. Sorry!)


As many of you will be aware, this last week, 14th to 20th May, was Mental Health Awareness Week and although I fully intended to have a series of mental health related posts ready to go up, life conspired against me to make that impossible. A big part of that was putting my first single out (available hereeeeeee!) so I’m not complaining but it has been stressful and taking up a lot of my brain. So my posts have been a bit all over the place – I’m working on that, I promise. But I did want to acknowledge this week because it is important.

I have seen so many social media posts this week where people have shared their stories and struggles with mental health and I’ve been blown away by each one. Sharing this stuff is such a big deal and I’m in awe of everyone who chooses to do so. This sort of stuff can make you feel like the world is shrinking around you but feeling understood opens it back up; it’s incredibly healing. I didn’t know how much I needed it until I found it. In my experience, talking about all of this has gotten easier, over time and with ‘practice,’ but it’s still hard. I still find myself hitting an invisible wall, choking on the air in my lungs, knowing that everything might change if I say the words out loud. It’s happened before. But I know that that’s the fear talking. And most of the time, I know better than the fear.

If you’ve followed me for a while, you know that I live with Autism Spectrum Disorder, Borderline Personality Disorder, Depression, Anxiety, Social Anxiety, and Obsessive Compulsive Disorder, although I wouldn’t blame you for losing track. My posts tend to jump around a lot, between different experiences and different diagnoses. Plus, things can change over time. Over the last twelve months, I’ve struggled particularly with the OCD, the anxiety, and the depression – the depression most of all. This time last year I was in a really bad place and one of the consequences of that was the decision to change my medication; it wasn’t the right thing for me anymore. Since then, I’ve been trying to find a new one without much luck; the side effects have been a rollercoaster ride and most of the time, I’m too numb to really feel any of my emotions. True, I’ve had very few meltdowns but, if meltdowns are the price of feeling things and therefore feeling like I’m actually alive, I will take them. So I’m not done with the medication search. Not yet.

I guess I’m surviving. I’m getting through. Hopefully, by next year, it will be more than that.

This week might have been about speaking out but that doesn’t mean it’s the only course of action that requires courage. Simply living with mental illness requires courage and as long as you are doing what you need to do to be safe and happy (or what will get you there), that’s all that matters.

The Blurt Foundation Selfcareathon 2018

About half way through April, I discovered that The Blurt Foundation were running a campaign all about self care on social media, encouraging people to be kind to themselves with a series of prompts. Then, if you wanted to, you could post a photo of what you did under the hashtag, ‘#blurtselfcareathon.’ I scrolled through and came away really inspired; with all the stress in my life recently, I could definitely benefit from some self care.

‘Self care’ is a phrase that has many people rolling their eyes at the moment. It’s become associated with brands encouraging you to buy luxurious bath products and with Instagram photos of cosy days under a duvet, ignoring all responsibility. And yes, taking time out from your life can be a form of self care but it’s often not that quaint. It can be clearing out all the glasses that have accumulated next to your bed, forcing yourself to eat enough even when it’s the last thing you want to do, or dragging yourself to the shower to get cleaned up. It can be going through your receipts so you know how much money you have left in your budget for the week, or counting out the pills you have left so you don’t run out at a crucial moment. Self care grew from minority groups taking ownership of their health, when society dismissed their concerns. We aren’t helpless when it comes to improving our wellbeing and whether you do that by taking a day off to escape and binge watch a TV show or by researching and reaching out to alternative practitioners because you feel your health isn’t being taken seriously enough, it’s an important point to remember.

Although I didn’t complete the challenge in the traditional sense, I thought I’d share a couple of the prompts and what I ended up doing, whether I posted about it or not:


Letter

“I’ve only just discovered @theblurtfoundation’s #blurtselfcareathon; I’m very late but I’m so excited to join in. The prompt for today is ‘letter’ so here is me, saying goodbye to my childhood bedroom on Tuesday morning: I left a letter I’d written under a loose floorboard for a future resident of the room, asking them to look after it for me. Saying goodbye was really, really hard, but doing this helped a little bit.”

If anything falls under self care, it’s this. This was something I did purely to help me get through a really stressful time. I definitely want to write more about this in it’s own right but it’s definitely relevant here.

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Small Steps

“My new room doesn’t feel like mine yet and I don’t think it will for a while but today I took the first step toward turning it into a safe space for myself. Blue walls and cream carpet to remind me of the beaches I grew up on. There’s a lot left to do but it’s felt really good to start. // Small Steps – Day 22 of @theblurtfoundation’s #blurtselfcareathon.”

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Song

For the first time in a while, I picked up my guitar and it felt really good.

Support

I didn’t end up posting this as part of the challenge for whatever reason but I think it counts. My therapist and I have taken to celebrating big milestones with cake, specifically from Lola’s Cupcakes (they make the most amazing cupcakes): this one was for three years in therapy. It feels like a lifetime and no time at all. We’ve worked through some really hard moments and started to explore things that I never thought I’d say out loud. That’s a huge deal. My therapist is incredible and I’m more grateful to her than I could ever say.

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Boost

Over the past few weeks, I’ve been to several gigs (pictured: Megan O’Neill and The Shires) and they’ve all been really cool in their own ways. Live music gives me a boost unlike anything else. It reminds me of my dreams; it helps to refocus me; it makes me feel alive.

Hug

There was a prompt specifically dedicated to animals but I couldn’t resist including the kittens in more than one post. I see them everyday after all. And pretty much every moment I spend with them is self care; they have an instant calming effect on me.


This was definitely a positive experience, trying to work the prompts into each day. Self care is something that’s so personal and so we have to figure out what works for each of us. As I said earlier on, it isn’t always pretty or glamorous but taking care of yourself doesn’t have to be a chore. Something like this is a good reminder to try different things, fun things, things that fly in the face of conventional advice. Hopefully you’ll find something that helps but the act of searching is also an empowering one: choosing positive steps is healing.