Snapshot #1: Country2Country Festival as an Autistic Person

So, while this isn’t specifically a post about mental health, it is about how my mental health affects my life and the things that I want to do so I think it’s still relevant and maybe useful to someone else. There still aren’t a huge amount of resources for people with Autism and music festivals aren’t a naturally autism friendly situation: they’re loud and busy and overwhelming. The obvious advice is to avoid the conditions that cause you distress but when you love music and live music, it’s not that simple. This thing that I love is also a great stress. So it has to be about balance. Am I having a good time? Is this taking more than it’s giving?

So, let’s begin. For those of you who don’t know, Country2Country is a country music festival in London, Glasgow, and Dublin. In London, it’s three days at the O2 Arena with little stages throughout the complex and a big arena show in the evenings. I love country music and I love the country music community in the UK so there are a lot of positive moments but a lot of stressful ones too. I thought I’d write out a little overview of the festival, the good points and the bad, and how the whole thing fitted into the picture of my mental health and experience of Autism.

The biggest consideration for events like these is my lack of energy, especially with my recently increased struggles with fatigue. Standing is a huge part of any festival and for me, standing for extended periods of time (and by that I mean more than a few minutes) results in shaking, dizziness, and overwhelming nausea. Not to mention the disproportional levels of fatigue that build and build until I physically can’t stand up anymore. Most of the shows are standing, especially the ones during the day. And like any concert, there’s the expectation that you stand, as if standing means you care more than someone who’s sitting. My fatigue has been so bad lately that I only went to shows where I knew I could sit down and even then, I really struggled. I had to really pick and choose what I could go to and that came down to an upsettingly short list. But I was determined to enjoy what I could manage.

My 2018 C2C experience began on the Thursday night with a Songwriters’ Circle where a group of songwriters take turns playing songs they’ve written (that have often been released by other artists) and sharing stories about writing them. I love these events: they’re usually pretty laid back and very inspiring. It is one of my favourite things to hear songs as they were originally written and to hear how they turned from nothing into something. I was almost at the back but I was just so happy to be there. The line up was Brett James, Luke Combs, Nicolle Galyon, Kip Moore, and Natalie Hemby who is one of my all time favourite songwriters so I was very excited and they did not disappoint. They played old favourites as well as new songs but I think everyone agreed that Natalie’s performance of her song, ‘Jealous,’ recorded by Labyrinth, completely stole the show. Although I must also give an honourable mention both to Nicolle’s performance of ‘Consequences,’ recorded by Camila Cabello, and Luke Combs’ new songs. And to round off the night in the most perfect fashion, I managed to hang out with Natalie for a few minutes after the show and she was even lovelier than I remembered. So with that as a first night, the standard was set pretty high!

My excitement was so high that I did crash afterwards. I was completely overwhelmed by nausea twice on my way home, to the point where I had to sit on the ground and just breathe until it faded. This is one of the side effects of my most recent medication (for depression) and it’s one of the worst I’ve experienced but once it passed, I was okay. The emotional energy I get from live music and from being inspired and from talking to these wonderful people is unlike anything else. I could live off that night for days, even weeks, and that’s without the rest of C2C. It’s like feeding a dying fire; I come back to life.

Having had to go back home to Brighton, Day 1 of C2C began with travelling into London. My first event of the day was a very exciting one: an exclusive listen to The Shires’ upcoming album. I’d applied for a ticket and not gotten one but one of my friends in the UK Country community offered me their plus one. I can’t put into words how much that meant to me. I’ve been listening to The Shires since their first single came out and I actually went to one of the events they held when releasing their first album. I’ve already said it but I absolutely adore the UK Country community: I’ve met so many wonderful people (and now great friends) while queuing for gigs or while waiting in meet and greet lines and it is just the kindest, most generous group of people. For this event in particular, I saw so many people offering their tickets to people they knew desperately wanted to go and I was so touched to witness that. Personally, I had three people offer me a ticket because they all knew how much I wanted to be there. How amazing is that?! You’ll get no spoilers from me but it was better than I’d hoped it would be and I felt honoured to be there. Ben and Crissie are such lovely people and it has been so special to watch their journey up to this point. I’m honestly so excited to listen to all of these new songs over and over when the album comes out.

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We weren’t allowed to use our phones in the session so, for the purposes of this blog post, I took a photo of The Shires appearing in the official highlights video.

I genuinely loved hanging out with everyone and catching up afterwards but it wasn’t long before I started to struggle. I powered through for a while but when my legs started to shake, I had to call it and headed back to where I was staying, although I did have to sit in North Greenwich station for a while because the shaking and dizziness got so bad. I would love to be able to wander around and spend the day listening to artist after artist but it’s just too much for me: my lack of energy, the constant high level of noise, and the overwhelming amount of people. With the latter two, it’s like my brain becomes overloaded and that can trigger a meltdown. I haven’t written about meltdowns very much so far on this blog (although I mentioned them here – a more in depth post is on the list, I promise!) but one way to explain it would be to imagine tapping on glass that has a crack in it. While one knock doesn’t do much damage, they build up and eventually it shatters. That’s how incoming sensory information feels to me. When I reach overload, I experience extreme anxiety and that can lead to crying, screaming, self harming, etc. Obviously that’s not something I ever want to experience in public, with people that I don’t know, where I don’t feel completely safe, so I have to be aware of how close to that point I am and retreat to a safe place when everything starts to feel too much. I went back to where I was staying and had a couple of hours of quiet time before heading back to the O2 for the arena show.

Kelsea Ballerini was my priority with Tim McGraw and Faith Hill’s headline set coming in second; I would have to assess my capabilities throughout the night. Getting into the O2 Arena always stresses me out: there could be a problem with the ticket, they might not let me take my bag in, the metal detector could go off and they’d want to pat me down… All of those things cause me a lot of anxiety before going into a concert but fortunately everything went smoothly this time (having said that, that anxiety still takes a lot out of me, even when the things I’m worried about don’t come to pass). It always surprises me that people can’t seem to tell how anxious I am because to me, it’s everything. It’s all I can think about. But as I said, it was simple, so that anxiety didn’t turn into anything else.

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“Can I be Kelsea Ballerini when I grow up? What a fab show. I loved every second of it. I may have cried a little bit because I want to write songs and sing them too and I want it so badly but that’s not necessarily a bad thing. We are made to love things and I love music unapologetically.” (x)

Kelsea Ballerini was fantastic. I’ve now seen her three times in the last year and she’s such a great performer. I got completely lost in it and that was wonderful, even if I did cry a bit because I want that to be me so badly – that’s not something I can ever really separate myself from. But I had a really awesome time, and I actually managed to lose myself in the music and not feel so self-conscious about enjoying myself. Normally, I can barely move for feeling so exposed to everyone’s opinions. So that was really fun. Also, we all need someone to look at us the way Kelsea looks at her audiences…

By the end of her set, I was feeling very shaky and since I wanted to be well enough for Sugarland the next night (I’ve been waiting eight years to see them live!), I decided to go home. That was derailed a bit by some stuff going on with a friend that didn’t exactly help my anxiety and by the time I got home, I was completely exhausted. As is normal after days and evenings of high emotions, it took me a long time to get to sleep but then I slept so deeply that when I woke up, I was so disorientated that a week could’ve passed. Apparently the previous two days had tired me out more than I’d thought because I slept for most of the day and only really managed to get up in time for the arena shows. I was pretty shaky and anxious but having some of my family with me definitely helped.

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Sugarland were freaking awesome. One of my parents played me a few Sugarland songs about eight years ago and ever since, I’ve absolutely loved their voices, their songs, and their energy. If I’m jamming out in the car, it’s most likely to a Sugarland song. So we were both super excited when they announced that they were getting back together and even more so when they were on the line up for C2C. We sang and danced (while sitting down) through the whole thing and it was so, so fun. It couldn’t have been better. I mean, there were more songs I wanted to hear but I do understand that they couldn’t just keep playing until they’d performed their entire repertoire. Mostly… Anyway, I was and am a very happy bean for having finally seen them live. It was a dream come true.

“I didn’t think I could love Sugarland any more than I already did but after last night, I absolutely do. The show was incredible and after waiting eight years, it was a dream come true. Apologies to the people behind me for all the crazy dancing and dramatic singalong.” (x)

The headline act of the night was Kacey Musgraves who I have loved since her first album. When I bought my tickets, I decided that I wanted to see her more than anyone on the Sunday so I decided to push myself to stay for her and then not go the next day. I was okay with that trade off and it was worth it. I’d sort of forgotten how much I love her and her writing style and it was so great to hear both my old favourites and some new songs from the upcoming album. I struggled a bit with the graphics on the screens; they made me a bit dizzy and gave me a headache. But it was a great show and I can’t wait for her to come back to the UK in October. I was worried about being in the underground with masses of people so we left a little bit early and had a relatively easy journey home.

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“Kacey Musgraves is a princess. I’m loving the new songs.” (x)

It was a good weekend, if a tiring one. I spent the next day in bed, tired and achy and a bit overly emotional, but that’s not an unexpected consequence of an event like this. It takes a lot out of me, on lots of different levels. Because of all the thinking and restricting and careful planning, it wasn’t too bad but I wish it were easier. I wish I didn’t struggle so much and I wish my abilities and my needs weren’t so incompatible with the way the world typically works. Being out in the world is stressful and overwhelming and most places don’t come with a built in quiet room to hide out in while I recharge. It doesn’t help that I find it really difficult to ask for support. I feel like I’m failing for succumbing to these problems and that I should be strong enough to power through, which I think comes from being diagnosed so late: I’ve spent my life thinking this way and it’s not an easy habit to break.

I hope that this has been helpful, or at the very least gives an insight into what it can be like to go to a festival such as Country2Country when you have Autism, when you struggle with your mental health. The positive moments are unrivalled but the difficulties are freaking difficult.

Hello and Goodbye to Lithium

About a month ago, I went back to my psychiatrist. We discussed the Venlafaxine and since it hasn’t had the effect we’d hoped for, it was time to think about what to do next. The most obvious option, the one most likely to work in the shortest amount of time, was to add an ‘augmenting agent’ and so I started taking Lithium. I’m aware of the perception of Lithium but it didn’t worry me, not any more than any other medication anyway. I’m always hopeful that a new medication will work, and if that comes with the opportunity to defy expectations then it’s even better. So I was feeling optimistic and, as I did with the Venlafaxine, I took notes so that I could track any progress and/or side effects.


FIRST NIGHT AND NEXT DAY

As the first night and then day was pretty interesting, I thought I’d write this one up separately. I slept restlessly and woke up multiple times with night sweats. The first time I woke up was very surreal: I was overwhelmed by the physical sensations in my body. I remember thinking, “I can really feel my hands. I really have hands.” It was very strange. I struggled to get back to sleep and when I got up in the morning, I felt very nauseous. I had a headache all day and by the evening, I felt very spaced out and tired.

WEEK 1

The restless sleep and night sweats continued, joined by complicated and busy dreams. I found it very difficult to wake up and I was so sleepy that I was falling asleep multiple times during the day. When I was awake, I was tired and weak, like there was no strength stored in my body. It was frustrating and upsetting to struggle to do everything I would normally do. I was spaced out and nauseous and shaky; if I stood up for more than about thirty seconds, I got dizzy and nauseous and my vision went white. It was horrible.

WEEK 2

I was still having difficulty sleeping and was struggling with sleepiness during the day. I continued to struggle with nausea and feeling spaced out but I also felt low; I think I would’ve felt depressed if I was able to really feel anything. The shakiness and weakness also continued.

WEEK 3

And we STILL have difficulty sleeping. It was taking me hours to get to sleep and hours to wake up and in the few hours between, I slept very restlessly. Then when I was awake, I was very sleepy. The shakiness, weakness, and nausea combination was still around. I also started to struggle with almost constant anxiety; there were stressful things going on but I couldn’t seem to shake it off once I’d done those things so it was around all the time.

WEEK 4

Continued difficulty sleeping, especially staying asleep and then I was so tired that I fell asleep during the day. Those short sleeps were actually the best I’ve had in months, much better than the hours I got at night. I was also still struggling with the shakiness, dizziness, and nausea, as well as the anxiety.

WEEK 5

The restless sleep continued, as did the struggling to wake up. On several occasions, I fought to wake up only to fall asleep again; I also fell asleep during the day multiple times. I was constantly tired. The nausea and dizziness also continued, as did the anxiety.


I did not like taking Lithium. It didn’t actually help my depression – I’m still feeling very emotionally numb and the fatigue has only gotten worse – and the side effects were constant and actually got worse over time: the difficulty sleeping, the shakiness/dizziness/nausea combination as well as all of those as separate symptoms… I was struggling so much that I had multiple doctors’ appointments to make sure that nothing else was going on. I had blood tests and blood pressure tests and even an ECG. They didn’t show anything outside the normal ranges but the fact that it was bad enough to warrant those tests meant that I booked an appointment with my psychiatrist for as soon as possible to look at my medication.

I have now had that appointment and we’ve decided to stop the Lithium; he was surprised and impressed, I think, that I’d stuck with it so long considering how bad the side effects were. Since the Venlafaxine hasn’t done much for me, I’d like to try something else but given how much is happening in the next couple of months, I’m reluctant to put myself through the ordeal of getting off it, the period of no medication, and then getting onto something new. So for now, I’m trying a new augmenting agent and I guess we’ll see how that goes. I think the emotional numbness is preventing me from getting too low about anything but regardless of that, I’m still optimistic about medication, even with all the bad experiences I’ve had recently. I fully believe that it was Phenelzine that made going to university possible and even now, years later, I still remember so clearly how good I felt when I started taking it. It felt like I was flying. It was amazing. Searching for that will always be better than letting the depression take over, even if I have to let it take over to remember that.

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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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Tired

If I could change one thing about myself it would be my energy levels.

I’ve struggled with fatigue for most of my life. When I was twelve, I suddenly got sick and missed a lot of school. I was nauseous and so tired that even walking upstairs was exhausting. I went to the doctor, had many, many blood tests, saw various specialists but no one could figure out what was happening. No one could find anything wrong. And yet I was still very unwell. The only clue we had was that the blood tests showed I had had Glandular Fever at some point. But that was it. Months passed and we tried lots of different approaches but nothing helped. I was managing a bit of school but it was only a handful of classes a week and even that exhausted me. I basically lived on the sofa, missing out on pretty much everything.

Just over two years in and someone suggested something called the Lightning Process. It sounded strange but I was desperate so we said yes. It’s a fascinating idea: changing the pathways in your brain to affect your body and your health. I went to the three-day training course but by the end of the second day, I knew something had changed. I felt completely different and it showed. I still had very low stamina but somehow I had more energy. It was like a switch had been flipped. I went back to school and although I did still struggle a bit, it was so much better than before.

Everything seemed normal until I was eighteen and doing my A Levels. The stress was overwhelming and before I knew it, I was drowning in exhaustion. Somehow, I made it through my exams but my mental health deteriorated to a point where I couldn’t start the next course I’d planned to do. I struggled with both anxiety and depression and my fatigue seemed – and still seems – to be inextricably linked. It’s not as simple as ‘I’m more tired when my mental health is bad’ but there is a correlation. Medication has helped and was one of the major factors in getting me through university but it’s still something I struggle with daily.

When I was diagnosed with ASD, I was told that fatigue isn’t unusual and sleep problems are common with Autism. Personally, I’ve struggled with insomnia but more often, I sleep long hours only to wake up as tired as when I went to sleep. It’s like sleeping is just a break between days; I don’t feel like I actually get any rest from it. I think that it’s also to do with how hard my brain is working all the time. Simply existing requires a lot of processing of information: my surroundings, what other people are saying or doing or feeling, sounds, smells, as well as my own reactions and emotions about all of those things. I have to actively process all of that and it’s exhausting. That’s a normal day. If something emotional happens, good or bad, it takes all of my energy to deal with that. To me, strong emotions are like fog and it can take days or weeks to work my way through it. Sometimes longer. I also live with a lot of anxiety, which has always done a number on my energy. That anxiety feels like a programme running in the background of my brain, using up my energy, physically and mentally.

It’s a constant struggle, a constant frustration. I know that I have less energy than the people around me but I can’t seem to change my expectations. I try over and over again to do the same amount as everyone else but I can’t sustain it. Sooner or later, I crash, completely exhausted. I’m getting better at managing my energy and building in recovery time but I can’t seem to stop myself raging against it. I can’t accept it. I feel a bit like one of those wind up toys that just keeps running into a wall. I want to do so much more than I have the energy for and that’s really, really hard to deal with. As is the long-term nature of it. You can’t just quit your life for a few days like when you get the flu or have a migraine. I’m not making light of those things – I’ve had and hated both – but the need to keep pushing forward despite feeling so exhausted and the anxiety about not making any progress wears me down in a way nothing else does. It affects every aspect of my life and it’s starting to feel like a part of me.

This makes it impossible for me to work. I’ve been extremely fortunate to get some benefits over the last few years but it’s still very, very stressful. I find it so difficult to adjust my thinking, to adjust to my new reality. I keep trying to meet the standards I’ve grown up believing I need to reach only to feel like a failure when I can’t reach them. The idea of even a part time job fills me with blinding panic because I know that I am physically incapable of doing all the tasks that would be required of me. Some days, even having a shower feels like climbing Mount Everest. I want to link to this Tumblr post because I think it explains the relationship between energy and the tasks you’re trying to do really well.

And it’s not just physical energy; it’s mental and emotional energy too. I get overwhelmed and burnt out really quickly, I think because I feel everything so intensely. A job that doesn’t account for that would have a devastating effect on my mental health and even though the world is starting to think about mental health and spread the message of putting you’re mental health first, I still feel incredibly anxious about this area of my life. I feel like having so little energy means I’m lazy. I feel like a burden for not having moved out, for not being able to be independent, for not having a job. Everyone I know has had jobs that they didn’t like and I feel like I’m entitled for wanting a job that I like and can do with the limitations I have. I feel like I shouldn’t want more than my neurotypical peers, like I should just get on with it and stop expecting special treatment. And yet, I know the limits of my mental health and of my body. These two sides keep clashing (which I’m sure doesn’t help my energy levels). It’s a horrible place to be stuck in and I can’t help but think that it’s connected to getting an Autism diagnosis so late: I grew up with the same external expectations as everyone else but a different internal capability. I know that now but it’s hard to hold onto that when the voices in my head are telling me that I’m just not trying hard enough. That one is a constant, in every area of my life.

I’ve often used being a Mac in a PC world as an analogy for Autism: most of the functions are there but they’re in different places or you have to find an alternate way of doing something. And I think it’s true here as well. When you run a programme that isn’t meant for the system you’re using, it doesn’t work as well. I think that’s a good analogy for being neuroatypical in a neurotypical world. I feel like I have not been designed for this system and so I don’t function as well as the people that have. Or maybe the system hasn’t been designed for me. It’s a chicken and egg situation. But you get my point. For whatever reason, I feel incompatible with my environment and that takes up a hell of a lot of energy.

I don’t really have any answers to this problem. I’m not even sure how to finish this post. This is something I struggle with daily and at the moment, I feel very worn down by it. I don’t want to spend my whole life planning in recovery time, replying to ‘how are you?’ with ‘tired’. I don’t want my life to be decided by my energy levels but I’m scared that it will be.

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