Living with Autism During a Pandemic

I know that everyone is talking about this right now and I’d rather not because it makes me so anxious but there are a couple of things I want to say and then hopefully this blog can go back to being a Coronavirus free zone. I know it’s scary for a lot of people and there’s a lot of information and advice being thrown in your face so I just want to document my experience so far and write about the things that are helping me to minimise my anxiety.

I think the first thing to say is that I hate change, as I know many autistic people do. I especially hate sudden change because it gives me no time to process what’s going on, which causes me a lot of anxiety. It also messes with my emotions, leaving me feeling unsettled and sick and empty and twisted up. I can’t really explain it properly; it’s such a specific feeling.

The first big thing to happen was Tin Pan South, the festival we were going to Nashville for, was cancelled, which meant we had to decide whether or not still to go as it could be more expensive to cancel our flights. But as the news from other countries got more serious, we decided that we didn’t want to go and get stuck there so we had to make the difficult decision to cancel. I was gutted. I am gutted (we were supposed to be flying out today). I was so looking forward to the trip and to the festival that, not only was the change stressful, it was very distressing too. And then, of course, there was the stress of getting the money back. With the travel ban, we have since managed to get everything refunded or in credit but it was incredibly stressful, in addition to all the stress coming from the news about the virus. I have family who would be in serious danger if they caught it so, even though I’m in much less danger, I was  terrified of unknowingly transmitting the virus to them. I still am so we’ve all been self isolating apart from essential trips like picking up extra medication and so on.

And then, suddenly, everything started happening. All of the concerts I was going to got cancelled, which isn’t a big deal in the grand scheme of things but they are the bright spots in my life that get me through when I’m in a bad place, which I arguably am right now. So that’s been difficult, especially the suddenness, as I mentioned earlier. Then one of my best friends was suddenly on a plane home, which was very upsetting (although, of course, I understand and support her in wanting to be with her family); one minute we were making plans for the next day and the next she was messaging me from the plane. That change has been hard and I’ve cried a lot about it. Plus, just as I’ve  started to get into the groove of going to therapy again, we’re having to switch to video sessions, which I thought I was fine with but turns out I’m struggling with. And then there’s just all the not knowing what’s going to happen or how long this is going to last. So there’s been a lot of change really fast.

I actually feel quite traumatised by all the changes. Stuff like this always messes with my head and with my emotions and I end up feeling like it’s causing brain damage, like parts of my brain are being permanently warped and will never recover.

The week after all of these changes happened (most of them happened over the weekend and into the Monday), I wasn’t going to go to uni. Many of my friends and classmates weren’t going, having gone back to their families abroad and within the UK, and I just couldn’t bear to be there and see it without them all with so little time to adjust. I just felt so unsettled and restless and anxious. I don’t think I’d’ve been able to concentrate if I’d been there.

My course discussed it through our WhatsApp group (we’re a small course) and ended up emailing our programme leaders to say that we didn’t feel safe and that we didn’t feel it was responsible for us all to be there, to travel in on public transport, and so on. Very few people went to the classes and I think it was later that day that it was announced that the course would be moving to online classes. I’m yet to see how smoothly that goes. They’re not moving our assessment deadlines, which many people are very upset about, something I definitely understand. There are a lot of reasons to feel an extension is necessary. My mind changes from hour to hour; I don’t know whether I’d want an extension. Yes, there’s massive anxiety affecting my life that makes it hard to work but at the same time, we don’t know how long it’s going to go on for and I’d rather just get the assessment over, if that makes sense. I don’t know. I don’t know what I want.

Me and my Mum – my household – are self isolating, apart from necessary trips out (getting the necessary supplies to stay in, getting supplies for the cats, getting what we need to allow us to work from home, and so on – making it possible to self isolate for as long as we need to). It’s weird: I usually spend days at a time inside but suddenly I’m really claustrophobic and restless and anxious and it’s been less than a week. I don’t know where that’s coming from. Maybe I’m just so full of anxiety that everything is making me anxious.

So, having said that, I wanted to list for you a few of the things I’m doing to try and minimise my anxiety:

  • Keep a routine – I’m not talking about being really ambitious. If you’re like me and you struggle with Autism and/or mental health problems, diving into a really ambitious schedule just means I end up crashing and burning and then feeling terrible. So when I say ‘keep a routine,’ I’m talking about the little things. I’m talking about getting up at a reasonable time, showering, remembering to eat, getting fresh air (even if it’s only opening the windows and getting out into the garden, if you have one)… Things like that. Yes, it’s motivating to be productive so if that feels possible, go for it, but it’s also important to be gentle with ourselves during a time of such great stress.
  • Keep to a regular sleep schedule – With nowhere to go (if you’re self isolating), it’s easy to just stay in bed, get up late, and then end up going to sleep at four in the morning. It’s really, really easy. But I’m trying to go to bed at my normal time and get up early, like I do everyday. It’s much better for my mood than if I stay in bed for hours. A regular sleep schedule is actually proven to reduce stress, help you to avoid getting sick, help you think more clearly, and a multitude of other things, all useful at a time like this.
  • Stay on top of my medication – This is a fairly obvious one but if you take medication, make sure you’re stocked up and that you take it diligently. I take a regular antidepressant, a regular anti-anxiety, and then I have an anti-anxiety to take as needed. And, as you can imagine, I’m needing it a lot right now. So I’m constantly listening to my body so that I’m aware of when I need to take it as early as possible, so that I avoid the unnecessary anxiety. Of course, there’s huge anxiety going around but there’s also anxiety that we don’t need to feel and if we can avoid it, then I’m all for that.
  • Start and end the day with something calming – I’m dealing with a lot of anxiety (as we all are) so I find it helpful to start and end the day with something that relaxes me. For me, this is usually writing my diary because it empties some of the stuff out of my brain and helps me feel like I’m not trying to hold onto so much. It’s all safe, but I don’t have to actively hold it in my head. So letting some it go is like being able to breathe deeply again.
  • If the news is too much for you, ask someone in your support system to keep you up to date on the important announcements – My anxiety has always been triggered by the news and it’s even worse now so my Mum listens to it, filters out all the noise and fear and things I don’t need to know and gives me the important, relevant information. This has been so helpful since there’s been so much confusion and misinformation and fear mongering. If this isn’t possible for you, check your national news once a day and then try not to look at it again. Because there isn’t as much information as there is news time, there’s a lot of speculation and opinion and it doesn’t do any good to get sucked into that spiral if you’re already really struggling with anxiety.
  • If you have to work or study, try to do it in manageable chunks (which will be specific to you) – As I’ve already mentioned, I still have an assessment deadline. I still have an essay due. So, even though I’m really struggling to focus because of all the anxiety (which means it’s taking so much longer than it normally would), I’m trying to work on it everyday so that it doesn’t pile up and so I don’t end up overloaded and overwhelmed (it hasn’t helped that I’ve had multiple problems with my laptop in the last few weeks). It’s hard, especially since it’s now much more difficult to get help with it, but hopefully the slow and steady approach works.
  • Indulge in simple things that improve your mood – This is not a trick question. If there’s something simple that makes you feel better, let it make you feel better. Some of the things that boost my mood (even temporarily) are having the fairy lights on, burning my favourite candle, spending time with my cats, watching my favourite movies and TV shows… You’re allowed to feel good, to try and feel okay even in the face of this big, scary thing and if something really simple does the job, then go for it.

If there was ever a time for looking after yourself mentally (and obviously physically), it’s now. I hope some of these tips are helpful and let me know if there’s anything that you find helpful in stressful times such as these. As I said at the beginning, hopefully this blog can go back to being a Coronavirus free zone after this post because I know it’s triggering for a lot of people, myself included. But if I find any helpful resources for getting through this, I’ll definitely share them because I figure we could all use all the help we can get.

2019 in Review

I don’t even know how to sum up this year.

If I’m honest, most of it’s blurry. The first half of it anyway. I was still trying medication after medication so I was kind of living in a haze. It’s scary to look back at a time not that long ago, search for memories and not be able to find them, find the details. Or worse, not even know what memories to look for. I hate it and it’s scary and I try not to think about it. Thank god for photos though. Looking back through my photos helped me to remember and I’m grateful for that. 

I got to go to the opening night of Waitress The Musical and to my complete surprise, Sara Bareilles was there, both to introduce the show and to bid us all goodnight. The show was amazing: I loved the music, I loved the characters, I loved the story, and the meaning in the story. And seeing Sara Bareilles in person for the first time since 2014 was extra special.

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I also got up stupid early to see her do a surprise set in St Pancras station. Apart from the fact that she has an incredible singing voice and is a great performer, even just sitting at a piano, there’s something magical about seeing a person you admire so much in real life. And my Mum was a trooper, running after her team (my medication meant I could barely stand up for the whole performance) and making sure she got my letter. So that was a good morning, even if I felt very unwell for the rest of the day (I’d overstretched, given the meds I was taking).

We had a nerve-wracking few weeks where our dog, Lucky, was incredibly unwell. I saw it happen: his head just tilted to the side and he stood there, looking so… wrong. I was convinced he was having a stroke. Plus his eyes were moving back and forth really quickly; I couldn’t imagine how he could even see. Despite a trip to the emergency vet then and there, we didn’t find out until the next day that he had Geriatric Vestibular Disease, which is basically vertigo. He was really, really sick. He wouldn’t eat and that’s really the sign that a labrador is sick. Mum was feeding him pieces of boiled chicken by hand just to keep him going. They gave him a morphine patch but that just made him sicker so they eventually removed it. It took a long time but eventually he was back to his old self. It’s not the same: he has a permanent head tilt, his balance is terrible, he can have trouble walking. But he seems to be happy and he’s certainly loved. So we’re getting through. Day by day, we’re getting through.

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I was fortunate enough to go to Nashville again, which was amazing, even though I was really, really struggling on my medication. I was depressed, overwhelmingly anxious, and my hands felt thick and clumsy, making playing guitar a real ordeal. As wonderful as it was to be in Nashville, I felt very guilty for not being as happy as I felt I should be.

Having said that, I had some really great experiences while I was there. I got to go back to my favourite places, see two Song Suffragettes shows (which are always such special experiences for me), and hang out with my friends who I only get to see once a year. I didn’t get to see everyone but I had a lovely time with the people I saw. I even got to see the awesome Caylan Hays play a show and hear all of her new songs. That was really, really special.

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Tin Pan South was amazing as usual, although I had to make some tough decisions over which shows to go to. They were all amazing though. My favourite was Nick Wayne, Hannah Ellis, Josh Kerr, and Natalie Hemby. Natalie is another person I hugely admire and she actually knows who I am now, which I’m honoured by. We got to have a proper conversation, which was one of my favourite moments of the trip. And I’d love to write with her one day: that’s a bucket list write.

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I also got to see Kelly Clarkson (who I’ve always, ALWAYS wanted to see live) in concert and Kelsea Ballerini was the opener, which was awesome because I love her. It was an amazing concert and I loved every second of it.

It was an amazing trip but I hope that next year I’ll be in a better place, a place where I can enjoy it properly and effortlessly. I think that’s gonna be one of my goals for 2020.

Here at home I also got to see some amazing concerts. My favourites were Maren Morris (I saw her twice but the second time was front row at the Royal Albert Hall, which was the most surreal, amazing experience) and Ingrid Andress, who had the whole crowd singing despite only having released a few singles. It was amazing. And she remembered me and we talked about writing together when I’m next in Nashville, although I’m now not sure it’s going to happen. But it was amazing to know that she was up for it. Hopefully one day.

I also saw Halsey in a super small venue and she was fantastic. We had trouble with the accessibility, which caused me a lot of anxiety, but the show was incredible. She’s an amazing, amazing performer. I love her. But I feel very out of place at her concerts, which is hard.

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I, with Richard Sanderson (Richard Marc on social media), spent most of the year working on my first EP. It was such a learning curve but I loved it, for the most part. It took an exceptional amount of work and I have to give so much credit to Richard and to Josh Fielden who mixed the songs because part way through, I tumbled into a really deep depression, accompanied with the worst anxiety I think I’ve ever experienced. It took a long time for me to get back to a place where I could work on it. It’s part of my musical story so I’m really glad it’s coming out, even if I still have a lot of anxiety about it. If you’ve been following this blog, you’ll know the story of the first single and you’ll know more about the rest of the songs soon.

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I spent several months in a deep, deep depression, the worst I’ve ever experienced. I basically lay on the sofa and thought about dying. It was awful. I don’t really know what else to say about it. It was just still, but with a mess of agonising turmoil underneath.

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Then, in the middle of the summer, one of my cats had kittens, despite the vet telling us in her vet check the week before that she absolutely wasn’t pregnant. We came home from dinner and Mouse was waiting for us. She took me upstairs to my room, curled up in one of the cat beds, and over the next few hours, she had a couple of tiny, adorable kittens. She got distressed every time I tried to leave so I stayed through the whole thing (and saw some pretty disgusting stuff that I never needed to see).

Having the kittens in my life has done wonders for my anxiety. Watching them grow and play and explore was so calming and mindful for me. And now that they’re older, all five cats play as a family. They’re a pride. It’s gorgeous. I don’t know what the future holds but having them in my life has been one of the most, if not the most, positive thing this year. I’m really, really grateful for them. Having said that, everyone’s spayed now so there won’t be any more surprises, which is probably – definitely – a good thing, as adorable as kittens are. The stress is just too much.

Somewhere in the middle of the holidays of kittens, I started taking Phenelzine again, which was a really difficult decision. I’m still struggling with the side effects but I am better than I was. I still have moments of depression but it’s not constant and I’m managing the anxiety with other medications. And best of all, I can write songs again. That is the best possible outcome.

September loomed and I spent time with the Disability Coordinator at my uni, something they had never had before. I actually felt hopeful about having someone who understood me. And then, she became extremely unreliable and that resulted in one of the worst meltdowns I’ve ever had – in the middle of Victoria Station. That triggered a period of multiple meltdowns a day, which turned the weeks into a blur. It was awful. I started my Masters Degree in Songwriting in one of the worst states I’ve ever been in.

Despite being part time, the Masters took up every day of the week, working on songs and trying to research while battling my OCD, which had suddenly spiked. I had no time off, no time to breathe. I felt like I was failing at everything. I think I’ve gotten better at managing it (and it’s going to be a focus in therapy when we start again in the new year) and I managed some research and I wrote some songs I’m really proud of. I enjoyed the course and classes but balancing everything with Autism and mental health problems was a nightmare. I’m going to write a post about the course in more detail but it still needed to be included in this post.

Oh, and somewhere in there, I turned twenty five. My Mum bought me twenty five yellow roses.

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The first single of the EP came out a few weeks into the course and it was a complete surreal – if incredibly stressful – experience. I had no idea what to expect, especially since I’m an independent artist, but for what was really a first, first single (considering ‘Invisible’ had no marketing and so on), I think it did pretty well. It got added to several playlists on Spotify and had radio play, local and BBC Introducing. That’s been amazing and I’m excited to see where the next one goes.

And now I’m finishing the year with basically no Christmas break because I’m working on the assessments for my course everyday. They’re causing me so much stress I feel like I can’t breathe. I’m also terrified of the fireworks tonight (another story I’ve talked about before) and don’t know what I’m going to do to avoid them because I have work to do and they cause awful meltdowns. So, all in all, not the best way to end the year. I’m cautiously optimistic about 2020.

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“2019 has been an incredibly difficult year. I feel broken. I feel like I was shattered into a thousand pieces and then put back together wrong. And if I’m honest I don’t know what to do about it. But there were good moments too and I’m so grateful for those. 2020, please be kind.” (x)

Nashville Looks Good On You

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This trip to Nashville wasn’t exactly what I’d expected. I’d had this vision of going out there and writing a load of songs and going to show after show after show and seeing all the friends I’ve made out there. I managed to do some of those things – and I’m really proud of what I achieved – but my mental health really dominated the trip, much more than I’d hoped it would.

We got off to a pretty rocky start when I forgot to take my medication the night before we flew out. We had to leave at two o’clock in the morning so I never really went to bed and therefore my nightly routine was disrupted. Plus I was excited and nervous and just generally all over the place. We got to the airport and I couldn’t even walk the distance to security, I was so completely out of energy. I thought it was the lack of sleep and stress of travelling but I physically couldn’t do it. We ended up asking the airport staff for assistance and they were absolutely amazing, at every airport we travelled through over the trip: they got me a wheelchair and took me wherever I needed to be, getting me early access to the planes, and so on. It was so helpful and honestly made the whole thing possible. I don’t know what I would’ve done without their help. It took a few days to recover and it was only then that we realised what had caused it.

The reason we go at this time of year is because the Nashville Songwriters Association International hold the Tin Pan South songwriters festival, where hundreds of songwriters perform songs that they’ve written. They have a great mix of famous and up and coming so you get a lot of different, beautifully written songs. All of the shows that I went to were good and some of them were fantastic. My favourites include Lori McKenna, Alyssa Micaela, Emily Shackelton, Hannah Ellis, Natalie Hemby, and Travis Meadows. They were truly incredible.

There were a couple of other musical highlights too. By some wonderful coincidence, Kelly Clarkson was playing the Bridgestone Arena while we were in Nashville. I’ve always wanted to see her and I’ve always wanted to go to a show at Bridgestone. And to make it even sweeter, Kelsea Ballerini – who I LOVE – was opening. So it was perfect. The show was amazing and I had a blast. Totally a bucket list moment.

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The other musical highlight was getting to see my friend, Caylan Hays, perform. We’ve written together several times and on my last trip, she came to see me play a gig and by another beautiful coincidence, she was playing on the last night of our stay. She was fantastic. She’s such a talented writer and I love her voice. Throw in some gorgeous electric guitar and I was in love. You can check out her music here.

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And of course, I got to go to two Song Suffragettes rounds. I love this organisation with my whole heart and so it meant so much to me to see both shows while I was there. They – the people who run it and the girls who play – are so inspiring and I hope I can play with them again someday.

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I had several writing sessions while we were there and for the most part, they were a struggle. I love the people I was writing with dearly but my brain still isn’t right: a casualty of my depression and the medications I’m taking. We’re still trying to find the balance where I’m emotionally stable and not creativity stifled. Still, I’m trying and I so appreciate these writers for having patience with me while I work through this. I also got to spend some time with friends, old and new, and they really inspired me in this dark patch of my life.

But throughout the trip, I really, really struggled. My anxiety was so high that I actually had trouble breathing and my depression was so overwhelming that I found myself falling apart (even in public places, which I’m usually able to avoid doing) multiple times. There were lots of tears and lots of Diazepam; it was very hard. I struggled desperately with wanting to go home and I was battling suicidal thoughts (helpfully described by Claudia Boleyn as, “my brain trying to kill me”) for most of the trip. In truth, it was a bit of a nightmare but there were some really great moments that helped me manage it and of course, I had my wonderful people (my Mum and my writing partner, Richard Sanderson) there to support me. The trip wouldn’t have been possible without them.

Also, shout out to Pancake Pantry for teaching me what it’s like to get excited about food.