A Week In My Life (June 2023)

The last Week In My Life post seemed to go down well and I have fun writing them so I might do them on a semi-regular basis, if I’ve got a week with some interesting stuff in it. I’ve been super busy recently and will be for a while so there may be a handful of weeks worth writing about; I guess we’ll see. This week was crammed full of interesting experiences, exciting and inspiring, but it was also really hard between the heat and my ongoing, searing back pain, plus the relentless mess that is my mental health. It seemed like a week that would be both interesting to write about and potentially read about.

The week in this post started on Monday 19th June 2023 and ended on Sunday 25th June 2023.


MONDAY

I got up early-ish, had a shower, and settled at my desk in the living room. I worked through my daily habits, like my daily Duolingo Dutch lessons (trying to revive my connection with my honorary Dutch heritage), and got to work on some blog writing and research. It was a quiet morning, which was good given how chaotically busy I’ve been and still am.

Early afternoon, I had a physiotherapy appointment to hopefully figure out what was going on with my back and how we might help it heal, help me manage the pain. But we got there and it wasn’t in their schedule: there’d been some administrative confusion but she had some time the next day and fortunately, the practice wasn’t far from my house so it wasn’t a huge amount of time wasted. We were back home pretty quickly and I could get back to work.

I wrote more of the blog post I’d been working on, did some diary catch up, and sent some emails that I’d been procrastinating. Emails are actually one of the ‘mundane’ things that I really struggle to do, I think because I had a deeply traumatic experience involving an email when I was a teenager that I’m still trying to get over. But still, every time I have to open what feels like a high stakes email, the level of anxiety I experience is overwhelming… and exhausting. I’m still working on it but I’ve trying different things since I was in my twenties, when I realised what a problem it was. I’m thinking about hypnotherapy…

I also had a couple of cool things to do. I worked through a series of interview questions for Indiefferential Magazine and sent them off (I think the issue is out at this point) and I revived my cat instagram, aprideofcats. I get so much joy out of posting pictures of my cats but I’m sure people would get bored of constant cat pictures, plus my main instagram account is basically my work account (that does sometimes involve pictures of my cats because sharing my life as a singersongwriter, neurodivergence and mental health activist, etc does mean sharing from all parts of my life and my home life is pretty full of cats, hence the ‘pride’ in the title).

They’re just so cute! So it’s going to be good fun to get to post about them more often again, hopefully making social media a happier space for myself after some difficult times on various platforms.

In the evening, I had a hydrotherapy session booked but my back pain was still so bad that the thought of going through the exercises and then having to shower afterwards made me feel nauseous. My back shouldn’t still have been hurting – the painkillers should’ve done the job according to the doctor – but I was still in so much pain even when taking the medication. Moving around without it was unbearable. So I needed to go back to the practice and ask what to do: the doctor had told me to give the drugs a couple of weeks and then come back if it wasn’t improving and it wasn’t. So, time for another trip to the GP.

So I put on a movie, did some more writing, had a scroll through social media, and went to bed at around eleven, although I didn’t get to sleep for a couple of hours.


TUESDAY

I woke up just before nine but lay in bed for a while, working on my habits, scrolling through social media, and replying to some messages that I hadn’t had the energy to reply to the night before. Then I had a shower and set myself up in the living room. spending several hours writing more blog stuff. It was set to be a chilled but productive morning but then the pain in my back slowly started to build. By the time a couple of hours had passed – just as it was time for my physiotherapy appointment – the pain was so bad that I couldn’t actually move. The slightest movement sent pain roaring through my back and what was even worse – and quite scary – was that I also had pain creeping down my leg until I couldn’t move that either. It was awful; it might be the worst pain I’ve ever been in, worse than the cracked rib, worse than when we’ve had to call ambulances because of migraines.  I don’t know what I did – and neither does anyone else, it seems – but clearly I seriously fucked up something in the muscles in my back.

Because the physiotherapist was so close, she was nice enough to run down and come and talk to me where I was stretched out on the sofa. She was lovely and suggested physiotherapy when I’ve recovered from the pain, which she’d be happy to guide me through, as well as recommending a TENS machine – a little gadget with wires and electrodes that passes electric pulses through your muscles to relieve pain – to help with the pain while I recovered. I’d never heard of them but her explanation was enough to convince me and when she left, I ordered a highly recommended one straight away.

Pausing to look at social media, I saw that Candi Carpenter – whose EP I’ve been (and still am) completely obsessed with – was playing a show in London, a rare occurrence since they live in Nashville. I missed their show last time, I think because I was still too anxious around COVID so I wasn’t missing this one. I booked tickets, for both me and my Mum, who is also a big fan. It was gonna be a blast; I couldn’t wait. (Spoiler alert: it was fucking fantastic.)

The pain eventually receded and I spent a couple of hours working on blog posts before going to therapy. My therapist and I had both created lists of things that we feel need to be discussed and worked through and we compared them, merged them; it wasn’t fun. In fact, it was pretty miserable and stressful. I know therapy isn’t supposed to be sunshine and rainbows but god, sometimes it feels like peeling layer after layer of skin off until there’s nothing left. Sometimes it feels unbearable. But I got through it and there have been harder ones since.

I walked out and when I checked my phone, I saw that Taylor Swift had released all of the international dates of the ERAS Tour (I swear, she always announces or releases stuff when I’m therapy – it’s weird). That is super exciting news because I want to go so, so badly but it was also really stressful, thinking about what an absolute disaster the ticket sales in the US had been. I’m not keen to go through an experience like that; it’s meltdown territory for sure.

I flung myself into the car and started the registration process on my phone as we rushed home. I set up multiple screens at my desk to register properly and register on behalf of a couple of family members; being ‘the Taylor Swift girl’ does result in this kind of scenario occasionally, not that I really mind. It wasn’t stress-free process, especially after the mess that was the US ticket sales. And the venue accessibility doesn’t seem to make it any easier; in fact, it’s probably harder because there are fewer accessible seats. So that was stressful but I did have a handful of chaotic and funny conversations with friends who were also trying to register. We’d all love to go together but I’m not sure we’re organised enough for that; I guess we’ll see when the tickets actually go on sale. It would be so, so fun though.

I spent the rest of the evening having a somewhat calmer catch up with some friends. I was too tired to do much more than that. I did do some (very) early Christmas shopping, something that’s consistent with my previous experiences with Phenelzine: for some reason, my brain just gets hyper-focussed on the idea and the urge to be prepared takes over and suddenly I’ve bought presents for half of my family (December and January are always a lot because, as well as Christmas, most of the family have birthdays in those two months – it can get very expensive so starting this early isn’t necessarily a terrible idea even if it looks weird on the surface).

I also continued making bead bracelets, inspired by the ERAS Tour and my current ADHD hyperfixation; it’s really soothing and it’s fun to make them for people, with colours and words that are relevant to them.

I went to bed too late and then couldn’t sleep; I was still awake at three, which wasn’t fun.


WEDNESDAY

I woke up around nine to a very warm day. I was struggling very quickly (hot weather makes the symptoms of my hEDS and POTS even worse, especially if I get dehydrated), as were the cats…

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This is Tiger in her classic ‘IT’S TOO HOT’ position. I felt for her but I can’t help but laugh too because she just looks so funny. I felt even more for our two fluffy cats (who were nowhere to be found – most likely in a cool spot somewhere).

I worked through my daily habits and then got ready for the day, plus packing for the next day since I’d be staying over in London. Then Mum and I got on a train and headed into London and over to South Kensington to experience Dopamine Land. I’ve heard several people say that it was a bit lame but I absolutely loved it. Maybe it’s the ADHD and the craving of dopamine but I had such a great time, playing in all of the different rooms with different lights and colours and environments; it all just made my brain so happy, like it was singing to the same frequency as everything happening in the rooms. It was just a really joyful (and actually quite inspiring) experience.

I kept my Instagram post quite brief but I thought I’d include some more pictures and thoughts here because it was just so fun and made my brain so happy; I wanted to share my favourites and why I loved them so much, although I am tempted to make a longer post about the whole experience. I guess, we’ll see.

The first room was similar to Yayoi Kusama’s Infinity Rooms, which I’ve always loved so I had a blast in there and wished I could’ve stayed longer (that was one of the few that had a time limit)…

I’ve been thinking about it a lot – apart from it being colour and pretty and cool to watch – and I’m not sure I know how to explain why I love them, both Kusama’s Infinity Rooms and this room; there’s just something about them that presses all of the right buttons in my brain and I just feel so joyful in that environment. I could happily have a sensory room in my house like that for when I’m struggling, not that I could probably ever afford it.

Another of my favourites was called Lucid Dreams with a looping video of all these different visual effects with different colours, different sounds, and what look like different textures. It was beautiful and soothing and mesmeric and I didn’t just want to touch it, I wanted to live inside of it. I’d love to know who designed it and who created it; it was just so beautiful and I could’ve sat there, watching it over and over again for hours.

And my other favourite was called Fire Lantern and it was probably the most soothing of the whole experience. It was almost completely dark with all of these lanterns hanging from the ceiling and big beanbags strewn around on the floor. I could’ve wiled away hours and hours, lying on one of the beanbags, looking up at the lanterns in the quiet, just the murmur of other people’s voices in the background. Again, it was another space that would be welcome in my house for when I get stressed and overwhelmed and need to disappear from the world.

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The description for that room read: “Give a moment to appreciate those around us, and those who are not, as you bask under our canopy of glimmering light. Dopamine plays a part in encoding and consolidating memories and fire lanterns hold an important role in many culture’s social events and festivities, lighting the way for souls of the ancestors. Contemplate the beauty of these mesmeric lanterns and remember fondly those with whom you have parted ways.” I thought that was really gorgeous and a nice counterpoint to the more mindless fun of, say, the shadow puppets and the ball pit.

When Mum and I finished there, we headed over to my London home base, to one of my other parent’s flat, and found her and her neighbour in the garden with the neighbour’s two dogs and their puppies (I can’t remember if I’ve talked about them on here before). The little girl, Skye, seemed to just choose me from the moment she saw me when she was a few weeks old and with every visit, she somehow seems even more excited to see me, basically defying gravity to climb up my leg and into my arms. Once there, she settles right down and all is calm again – apart from the other two. It’s one of the most adorable things I’ve ever seen and I’m completely besotted at this point. I tried to stay detached but, with how we’ve bonded, I don’t think I could have, even with all of the willpower in the world.

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After catching up with everyone, Skye firmly snuggled into my chest (often tucked under my chin or with her head resting on my shoulder), the two of us lay down on the sofa bed and had a nap together. I was exhausted – from the travel, from running around Dopamine Land, from the still significant pain – and fell asleep with Skye stretched out on top of me.

I woke up a couple of hours later and Skye was still there – she is just too cute to handle. She was staying for a sleepover, practicing being away from the rest of her family but she remained curled up with me for most of the time we were both there. The three of us had pizza from the amazing Italian place around the corner (the human three of us – Skye was not included regardless of how badly she clearly wanted to be) and watched a movie before going to bed nice and early since Mum and I had to be out of the house at about eight. I didn’t sleep particularly well, anxious about the next day and the potential for triggering more pain in my back, but every time I woke up Skye was either stretched out on top of me or pressed up against me; if I had to keep waking up, that was the way to do it.


THURSDAY

So, before I talk about this day, I need to talk about Breathing Room by Anna Berry, an installation I came across when I was searching for autistic artists during the final project for my Masters.

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Breathing Room by Anna Berry (x)

It’s a tunnel-like structure made up of panels covered in paper cones; to me, they look like petals or leaves or feather but I don’t know what other people see. The outside is rigged to recycled bicycle parts that seem to move at random, causing the panels to shift almost imperceptibly and making it look like the structure is breathing. You almost can’t see it, it’s that subtle. I instantly fell in love with it and waited impatiently for it to travel further south, Bristol having been the closest exhibition site to me. But the week before, I’d seen on Instagram that it was coming to London and not only could I finally visit it, I could volunteer to help put it together in the days before. I was beyond excited. I had to think about it seriously because the back pain was still brutal and I was worried about whether I would be capable of doing everything they’d want me to do but this was an experience that I desperately wanted to do, one that was potentially once-in-a-lifetime. So I decided to try and do my best with the mobility (and strategies) that I had and having talked the whole thing through with my Mum, she decided to volunteer too, both to support me and because she knows how passionate I am about it and we thought it would be fun to do together. So, all caught up…

The morning was a struggle, especially with Skye trying to help me with every task (none of which required the help of a dog, although it was cute), but Mum and I managed to get up and out of the house on time and drove over to the site of the installation. We did get very lost and confused but we made it, only a little late, and everyone there was really lovely (between the permanent team and the volunteers, there were probably about fifteen of us in total). They briefed us on the different cones and how to attach and arrange them and then we got to work. It was quite meditative work, following the instructions over and over again. My only difficulty was the material of the rods, which you could give you some pretty nasty splinters, hence the gloves. But even with the gloves, every now and then I felt like there were tiny slivers of fibreglass burying under my skin and the stinging sensation didn’t go away for days, which wasn’t particularly pleasant.

For most of the session, we were in the direct sun, which did get pretty hot and I managed to get a pretty solid sunburn along one of my arms. And, of course, it’s the only time in my life where a sunburn has turned into a tan and because of the gloves, the line is noticeably high up my wrist – I’ve had it for over a month now and I’m not kidding when I say that it entertains me every time I see it. It just looks so silly.

It was a really cool experience and serendipitously, I ended up getting to meet Anna Berry herself. She was really lovely and we talked about how I’d researched the piece for my MA, how it fitted into a songwriting MA (I might do a whole post about it because I love it so much and find it so fascinating), which got us into a very exciting creative conversation that will hopefully lead somewhere. Well, it will lead somewhere; it could just lead to a handful of different interesting places. All of them could be very cool.

I would’ve loved to have stayed and do the second shift but I was getting tired and my back was really hurting, even with painkillers. So we said goodbye to everyone (that involved walking through a completed section of the tunnel, which took my breath away – it was just stunning) and headed home (London home). I was completely exhausted and ended up crashing on the sofa and sleeping for about three hours. Four hours of coning was surprisingly tiring but I guess I was also trying to cope with the pain.

When I struggled up, we had an early dinner together before me and Mum drove out to High Wycombe to see Tim Minchin; it was the only date that had any tickets at all and even then, me and Mum couldn’t sit together. But we were there for the show and had plenty of time in the car to talk about it afterwards so it was all good. We were just happy to be there. And holy shit, we were right to be. The show was amazing. There’s a weird sort of cognitive dissonance to being at a Tim Minchin concert without any comedy songs although, to be fair, many of his ‘serious’ songs do have lyrics here and there that have a humorous twist. And even though he plays very few, if any, of his iconic songs, the show is incredibly compelling (I found it particularly mesmerising being so high up and watching him play the piano, plus watching him make mistakes was both entertaining and oddly comforting because it showed such a deeply human side to him when often we see him just as this hugely skilled musician and writer). He talked about the theme of the show being songs from different people’s points of view but I thought it gave us a really unique insight into him in a way that his comedy songs don’t. Getting to see both kinds of songs live was really special. I was just lost in the magic of it from start to finish.

When introducing one of the songs, he started talking about neurodivergence and I suddenly got very nervous – almost panic attack nervous – expecting him to make some naively ignorant and offensive comment as so many people do. But he didn’t. He clearly had a nuanced understanding of it and while I doubt it was perfect – none of us get it perfect all of the time – it meant a lot to hear him talk about it:

“There’s a punchline to all this self-indulgent reflection on my capacity… or my tendency, to write songs from other people’s points of view, which involves the extraordinary prevalence of autistic people in my audiences… and my family […] and how they’re so much better than normal people. ‘Normal!’ [Laughs] [Audience laughs] Neurotyps. My daughter is on the Autism spectrum – we talk about ‘neuro-quirky’ – and obviously these days there’s all this terminology. People talk about neurodiverse people, if we’re into policing language, which we seem to be these days: ‘It’s the most important thing: get the language right and all of history’s problems will go away!’ [Audience laughs] ‘Wagging the tail of the dog and the dog’s happy!’ [Audience laughs] Anyway… We’re all just all about words these days. Post modernism. It’s fucking great… [Audience laughs] Words… words, of course, are powerful. So we talk about neurodivergence as well as neurodiversity, [which] is what we all are. Neurodivergence is a certain… is Autism and ADHD and these categories, which of course will change as we discover more. The umbrellas will go inwards and outwards and stuff. [He told a story about a woman asking him to play a song, ‘So Much Love,’ from a musical he worked on about twenty years ago.] Anyway, the woman who slipped into my DMs and asked for that song explained to me that the reason she loves it is because she’s autistic and she finds it very, very hard to communicate with people how she’s feeling and often upsets people because she struggles with… you know, she’s masking all the time and finds it hard to have genuine relationships with people so that song means a lot to her, which meant a lot to me… that she shared that with me. What’s extraordinary is that it’s certainly not the first time I’ve had a message from a neurodivergent person because, since I wrote Matilda, I have had hundreds and hundreds and hundreds […] of messages from autistic people, ASD people, parents of non-verbal ASD people, um… talking about ‘Quiet’ and what it means to them and it’s one of the great joys of my career is that somehow, by writing from the point of view… by me trying to step into the shoes of a six-year-old with a big brain… I’ve managed to tap into an experience of what it might be like to live in the crowded or busy or difficult brain of an ASD person. And it’s kind of also weird because it’s all sort of come full circle because my other connection with Autism is that my daughter has ASD, which is interesting because the song I wrote about her when she was three weeks old, ‘White Wine in the Sun,’ has been donating its proceeds to Autism charities for sixteen and a half years, many, many years before we knew Vi had ASD. And so… I think what I’m trying to say is I always thought I was, like, the absolute definition of the neurotypical person. [audience laughs] I… Really. And I still think I am. My autistic fans and my daughter are, like, [makes a face that looks like ‘are you serious?’] [audience laughs] But… Obviously, understanding what ASD has expanded greatly since my cousin who is very high needs ASD was diagnosed many years ago. What I’ve realised is the thing that I think makes me most neurotypical, which is that, when someone presents me with data that flies in the face of a previously held assumption, I just change my mind. And I’m like, ‘That’s what a normal person does. Like, they’ve got these feelings, then someone presents data that invalidates their feelings and so they go, okay, I’ll feel something differently. And that’s, like, normal, right? And it’s like, that’s not normal. [Audience laughs] And it’s very, very frustrating and probably the source of most of my comedy career is my frustration with the fact that people prioritise their feelings over data. But anyway, fucking humans, eh? I don’t know why we fucking bother. Anyway, here we go, here’s ‘Quiet.’ Just one more thing, my audience as I said earlier tilt neurodivergent and I… I FUCKING LOVE how interesting my audiences are. It’s like… If I feel doubt about my work, I look at the types of people who come and watch me and I just go, ‘Fuck, I’m doing something right.’ [audience cheers]”

That speech almost had me in tears. I don’t think I’ve ever felt so recognised and so valued by a public figure before and I appreciate it more than I can express. I actually wrote him an Instagram message but I have no idea if he ever saw it; he must get so many.

It was an amazing show and even though I was exhausted, I was emotionally and creatively invigorated by it, by the whole day. I’d been thinking about the song inspired by Breathing Room and the show had me scribbling in my notebook despite the dark with multiple different song ideas. If I hadn’t been so tired (and my hands hadn’t been stinging so badly), I would’ve gone home and sat down to write then and there. But when we did finally get home, I was so tired that I just had to go to bed. I think I was asleep in less than five minutes.


FRIDAY

I slept in and then lay in bed for a while, doing my habits – Duolingo, reading a bit, and so on – and having a quick look at social media before getting up just before twelve. After a shower, I settled in the living room and spent a couple of hours working on various blog posts, as well as replying to various texts and social media messages that I hadn’t had the time or the brain space to deal with over the previous few days.

At two, I had my weekly Zoom date with one of my uni friends and we got caught up – and went on many, many tangents – for several hours before watching an episode of Primeval, the show we’re watching at the moment (we both watched it when we were younger and decided that we had to revisit it – we laugh a lot…). It was a really nice call. We always have really nice calls; they’re always a highlight of my week.

We ran over my soft deadline, as usual, (we both have ADHD and neither of us are particularly good with time) and then I ran around like a headless chicken, trying to get everything done and find the stuff I needed before I had to leave for therapy. We talked about a lot of things – I felt very all over the place – and while it wasn’t a brutal session like some of them can be but it wasn’t easy and I was exhausted by the time we finished, plus my back was killing me. I’d ended up almost lying on the sofa in my therapist’s office, trying to find even one position that didn’t make me want to cry or throw up.

When I got home, I discovered that the TENS machine the physiotherapist had recommended had arrived so I tried to figure that out. We attached the electrodes to the most painful parts of my back and, once I’d found the right settings for me, the pain seemed to just smoothly dissipate. It was such a relief that my knees nearly buckled. And after wearing it for a little while, the pain was all but gone; suddenly I could actually move again, although I still had to be careful. The pain would slowly reappear when I turned it off but it did give me real periods of relief, which felt so, so good.

Given that I was heading up to London again the next day, I went to bed early and actually managed to drift off relatively quickly.


SATURDAY

I woke up painfully, before six, and couldn’t get back to sleep. I worked on my habits, had a scroll through social media, and sent some messages when it got late enough that I wouldn’t be waking people up. Then I got up, had a shower, and settled in the living room. I did some blog writing but I struggled to concentrate after such a bad night. But it wasn’t long before Mum and I were packing our stuff and heading for the train.

The Royal Docks isn’t the easiest place to get to and it took a long time – and a lot of effort and pain – but eventually we made it, reaching a complete and beautiful Breathing Room. We sat for a bit and had some lunch, watching people go in and out; I was surprised by how many people just walked past without investigating, especially since it was free. If I saw something that weird, that intriguing – and it was free – I’d be inside in a heartbeat.

It was an incredible experience, even better than I’d expected in all of the time I’ve been waiting to visit it (over two years at this point). It was pretty quiet and after a while of walking up and down inside it, I just sat in the corner of one of the turns and absorbed the experience. I watched it ‘breathe’ as the panels moved, the cones quivering almost imperceptibly, and listened to the gentle creaks and groans. I loved it. I wanted to live in it. I could feel the song ideas spooling out in front of me, like balls of string unrolling and I just breathed it all in. It was one of the most breath-taking experiences I’ve ever had (I know I’m using a lot of breath related language but that’s just what’s coming naturally). Emotionally, I could’ve sat there for hours but between my physical limitations and my time commitments, that wasn’t exactly practical. So, eventually, I very reluctantly dragged myself outside and sat on the edge of the water with Mum. It was so hot and I was so tired that I actually fell asleep for a little bit and then desperately struggled to wake up, drifting off over and over again (which one of the guys on the team found very funny – totally fair).

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But eventually we were up and moving again, parting at the DLR station. I said goodbye to Mum and was sitting, waiting for my train when everything started going wrong (not seriously but in a very not fun way). A man approached me and asked if I could check whether he was on the platform for his destination and because trying to help is my default position, I helped him with his route and then politely made conversation until the train arrived. But then he had me semi-trapped and started oversharing about his life and asking me out (even though he must’ve been at least ten years older than me). And when I said no, he just kept reframing the question and basically trying to emotionally manipulate me into saying yes, trying to make me feel bad for him so that I’d say yes; I couldn’t escape and early on, I’d stupidly mentioned when I was getting off so I was stuck. He wasn’t doing anything but I felt distinctly unsafe and pressured and when we finally stopped at my stop, I flew off the train and was up the escalator and halfway down the street before I turned to see if he’d followed me (that is something that’s happened before and I was not leaving that opportunity open again). I didn’t see him but, shaken, I called one of my parents as I tucked myself into the bus stop and we talked the anxiety down. Writing it out, it seems silly to have felt so freaked out by it but that’s the truth; that’s how the experience made me feel.

By the time I’d done my bus trip and reached my London home, my heart rate had returned to normal and I felt pretty much like myself again. And being greeted by six dogs was definitely a good way to completely distract me and change my mood entirely. Skye climbed up my leg and into my arms, which was possibly even more adorable than it usually is, and we all went inside so that I could lie down on the sofa… at which point all six dogs tried to sit on me. That started out being very cute and ended up being deeply chaotic given that they all got jealous of whoever was being stroked at the time (obviously it’s a bit hard to stroke six dogs at once, even if they are very little dogs). After that, it wasn’t long before most of them went home and me and Skye curled up together and me and my parent settled in for the rest of the afternoon and evening. I’d thought that I’d tried to do some work but, in the end, I just didn’t have the energy and snuggling with Skye and having a family catch up and hang out felt like a more important use of my time.

I did make sure to post some cute pictures on my cat instagram though…

We’ve been trying to sit down and binge watch Citadel, something we both love doing together with a new show when we have the time. We got ourselves pizza (we do actually eat vegetables when we have pizza, by the way – just to reassure you guys that I’m not in danger of developing scurvy) and settled in to watch. We didn’t quite manage it all before the both of us started falling asleep (and Skye was long asleep but I think it’s safe to say that she isn’t Citadel’s target demographic). So we decided to finish it in the morning and I stretched out and went to sleep, Skye tucked into my side. I was so tired that I forgot to take my pills, which shocked the hell out of me: in ten years of taking medication, I could probably count the number of times I’ve done that on one hand.


SUNDAY

I woke up early again, although not as early as the day before, but I couldn’t really mind: it just gave me more time to snuggle with Skye, who was still all warm and sleepy. She just wanted to be close and I was very happy to oblige. So we spent a couple of hours that way; I stroked Skye with one hand where she was curled up on my chest and went through my habits, messages, and social media on my phone with the other. There are certainly worse ways to start the day.

Then, after a shower and some breakfast, we finished Citadel (Season 1). I’ll obviously be writing about it more in my end of the year, media review post, but I really enjoyed it on the whole. There were moments that were a bit too clichéd for my taste but I liked the characters, the storyline, and the stunts looked fantastic. I’m intrigued to see where they’ll take the second season.

It was a very, very hot day, so hot that, even though I absolutely adored Breathing Room, I grudgingly decided not to go; the idea of getting there and back in that heat felt overwhelming. I’m not sure I actually good have done it, between my pain and autonomic dysfunction. So, instead of rushing off, I hung out in the garden with the little community of neighbours, which was really nice. Because of the personal stuff that isn’t mine to discuss – before the last couple of months – it’s been a long time since I’ve been visiting consistently and so I haven’t really been present in that space and multiple people have moved in and out of the block of flats in that time so, since coming back, I haven’t really felt part of the little community of neighbours but now I’m starting to and it’s really, really nice. We had a nice time hanging out, even if I was running on less brainpower because of the heat.

I didn’t take many pictures that day but here is a collage of the photos I took of Skye over the weekend…

I just can’t get enough of her.

The stars aligned and another of my parents was also heading home from London so we managed to meet at a convenient station to catch the train home together. As I was walking there – very slowly because breathing in that heat was like trying to breathe underwater – I listened to the new Maisie Peters album and absolutely fell in love with it on first lesson. I honestly can’t pick a favourite song, or even five favourites; there are a couple that I don’t love quite as much as the rest but I basically love every track. I’ll write about it more in my National Album Day 2023 post when I’ve had more time to listen and think but I think it’s already safe to say that it’s one of my top albums of the year.

I dozed on the train home, even though it was hot and busy and loud, and then, when I got home, I fell asleep properly on the sofa (it was an exhausting week, what can I say) and slept for a couple of hours until screaming pain in my hip woke me up. That was unpleasant. After I worked the pain out of the joint, I struggled up and Mum and I spent the evening catching up, watching a movie, and I did a bit of blog writing. But even with all of my naps, I was still exhausted and went to bed earlier than usual. And I was so tired that not only did I forget to take my pills again but I also fell asleep without turning the light off; I was that tired. I woke up confused in the middle of the night and turned it off and it wasn’t until the next morning that I realised what had happened. Life is really pushing me to my limits at the moment.


So, a busy, emotional week. This was back in June and I was definitely burning myself out, if only because I was so excited to feel joy again (the hard stuff was still there, of course, but I haven’t felt real joy in so, so long – it’s hard to turn opportunities for it away when they present themselves). I kept pushing for another few weeks before I really had to take a break, both for my physical energy levels and my emotional energy levels; it was all getting too much. But exciting things are still happening, even as I try to slow the pace down a bit.

Anxiety Around Social Media

Social media is a big part of all of our lives. For me personally, it’s a massive part of my job, of being an independent artist, of getting my music out into the world. It’s a big part of sharing these blog posts with people. And it’s a big part of keeping up with the lives of my family and friends. There’s some really good stuff there. But I also find it really hard; it causes me a lot of anxiety and when I’m in a fragile state of mind, it can contribute to my depression. And since this is the place where I talk about those things, I thought I’d write something about social media and some of the reasons I struggle with it. Maybe you guys will relate.


  • Seeing something upsetting – My anxiety, my depression, all of my emotions (which are powerful on a normal day)… they’re all very easily triggered and social media seems to be very good at that. One post, even if it’s not directed at me, can really upset me: scary political or society or world stuff that I can’t do anything about, harsh statements, unnecessary criticism of public figures I feel invested in (especially if it’s inaccurate, which it often is), and so on and so on. It’s so hard to climb out of the misery that one stupid post can cause that sometimes it feels safer just to avoid social media altogether.
  • Seeing something good happen for someone who hurt you – Chances are that, even if you’re not connected with the person who hurt you, people you are connected with are and so you’ll probably still find out about what’s happening in their lives. And honestly, sometimes I’ve found it easier to remain following them on social media so at least these moments don’t come out of nowhere and pull the carpet out from under you. Even if you think you’re over it, even if you are over it, seeing something good happen to someone who treated you badly when you’re in a fragile place can be really hard to manage emotionally, turning a good day or week into a bad one.
  • Seeing your ‘competition’ doing better than you – Even if you aren’t a competitive person, if you work in an industry that is, by it’s very nature, competitive, seeing someone do better than you (have success at something similar to a project of yours, get funding that you were hoping to get, etc) can trigger insecurity, even if you were in a really good, solid place before you saw it. Personally, I can only speak to the music industry. I want my friends and my peers to do well because I know how talented they are and how hard they work but, of course, I also want to do well. So while I’ll always feel pleased that they’re doing well, I can find it difficult as well, especially if I’m stuck in a rut, in a bad mental place, or having any other number of difficulties. It’s a complicated one. In fact, I think they all are.
  • The posts of others making you feel limited – There are various ways you could interpret this point but for me, as a disabled person with mental health issues, it can be really, really hard to see other people out in the world, doing the things that you want to do but can’t because you’re limited by whatever symptoms you live with. I struggle with this a lot and I think part of it comes from being diagnosed so late: I spent twenty years believing that I should be reaching (and exceeding, if I’m honest, because I’ve always been a perfectionist) the same standards as everyone around me. It started to become apparent that I couldn’t and since then we’ve been assembling the puzzle as to why but that hasn’t completely changed things in my head. I know and I understand why I can’t necessarily do the same things as my peers but I’m still really hard on myself when I can’t. I know it’s a process but it’s one that seems to be taking an inordinate amount of time, regardless of how I try to realign everything.

I’m pretty good at curating a mentally and emotionally safe social media bubble. It still allows healthy debate and differing views, of course, but I’m just really careful about where those views are coming from, i.e. not people who continuously rant and rage but people who share carefully considered thoughts and discuss them with equally considerate people. It’s obviously not that straightforward – it never is with social media – but it is possible to block out a lot of the negativity, the people who are being negative just to be negative. But even then, there are always posts that pop up out of nowhere and knock your feet out from under you.

It was a strange experience, researching for this blog post. While I’m usually writing about my own experiences on this blog (in this case with social media), I often read other blogs and articles to get a broader perspective, get more context, and making sure I’m not missing anything that would be important to include. During my reading for this post, something that came up a lot was the issue of presenting a persona online that isn’t quite the same as your own and to me, that was a surprise. I’ve honestly never felt the pressure to present as anything other than myself – although, I admit, snippets of myself rather than the whole experience (no one needs to know about this boring day or that book I never finished reading). I’ve always seen social media as a reflection of myself, the good and the bad. Maybe that’s an Autism thing – linked in with the commonly occurring need for and sense of honesty. So I can’t really speak to that; I’ll leave that to someone who has more experience with it (I wanted to add a link but I haven’t found one that I think is actually helpful beyond explaining the problem – I’ll add one as soon as I find one that offers something more helpful).

I don’t know what the answers are. But just because we don’t know what the solutions are, it doesn’t mean we stop talking about the problems. That is, afterall, how we eventually come up with the solutions. I need to use social media in order to work and I’m aware that I do get some real good out of it but the downsides can be really hard to handle. So, yeah, I don’t really know what to do. But writing out my thoughts has always helped me and maybe some of you out there will relate to this. Maybe you’ll have some thoughts about it; maybe you’ll just feel a little less alone. I hope so.

A Tribute To Daisy Johnson

For a long time, I avoided all things superhero because they reminded me of my Dad who died suddenly in 2008, when I was thirteen years old. He loved superheroes and passed that love on to me: we’d spend Saturdays watching Justice League and Teen Titans, drawing the characters and designing our own heroes and villains. It was something really special that we shared but when he died, they just became a painful reminder of what I’d lost. So I avoided anything related to superheroes for a long time.

But then, at some point in 2015, I stumbled upon Agents of SHIELD and instead of the hollow ache that I’d come to associate with anything superhero related, something just pulled me in. I loved the characters, I loved the relationships, I loved the stories and the different aspects of sci-fi and drama and action that they explored. I also loved how they didn’t take themselves too seriously, but how they also let the heavier moments rest and breathe. I can’t really explain it but for the first time I felt comforted by the superhero world, rather than saddened by it.

I instantly loved Daisy Johnson. Now, I could write a thesis on her (I’ll try not to, I promise). She’s smart and funny and tough; she also feels her emotions deeply and is incredibly driven, often by those deep emotions and her sense of what’s right and wrong. Over the seasons, we see her go from a foster kid turned hacktivist, trying to find information on her parents to a loyal, dedicated agent and superpowered hero. Of course, she grows up and goes through a lot in that time: she’s betrayed by people she trusts; she develops powers that allow her to manipulate vibrations, to the extent that she causes earthquakes while unable to control her abilities (or emotions); she discovers that she’s a descendant of an ancient race that call themselves Inhumans and finally meets her biological parents, only to be caught in a war between the Inhumans and SHIELD; she guides new Inhumans as more and more gain their abilities (a result of the war); she becomes a leader; she loses more loved ones than anyone should; she isolates herself after she’s brainwashed, unable to forgive herself for the harm she causes; she struggles with trust and guilt and how dangerous her powers make her; she finds herself in a virtual reality, in a dystopian future, far out in distant space, in an alternate timeline… But through all of that, she finds family in her team and a place to belong in SHIELD, two things she’s spent her whole life searching for.

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She’s not perfect, of course – she makes her fair share of mistakes and bad decisions. Sometimes she hurts the people she loves. But while every blunder becomes a part of her, she doesn’t allow them to define her. She’s defined by the future, by what she does next. She inspires me to be the same. And above all else, her motivation is to help people and that’s something that’s never changed; it’s something that’s at the very core of her and I find that really inspiring too.

The show ended a few months ago and if I’m honest, I’m still trying to get my head around that. How can my favourite show be over? But if it had to end, they couldn’t have done a better job. The last two episodes of the season are some of the best they’ve ever done (although I’m not sure anything could surpass the legendary time-loop episode) and the final scenes are as heart-warming as they are heart breaking.

*Major spoiler alert* The season (and the show) end with the team meeting (bizarrely enough, through an ultra sci-fi version of Zoom) for the first time in a year. They catch up for a few minutes before leaving one by one, giving us the opportunity to see what adventures they’re in the midst of now. Eventually the only two left are Daisy and Phil Coulson (“It was so special to have that moment with Clark [Gregg].” Chloe Bennet says), without whom the show would never have existed. It’s kind of funny: the show would never have existed without Coulson and neither would Daisy, had he not pulled her out of her van and onto the SHIELD plane. From that moment on, there’s something really special about their relationship. Every relationship in the team is unique and special but there’s just something about Coulson and Daisy’s relationship that has always felt bigger than words. There’s definitely elements of student-teacher, best friends, partners in crime, and father-daughter (the last comes up throughout the show), but again, it seems to transcend all of those. The actors seem to agree, and both have spoken about how similar that relationship is to their relationship in real life.

“It’s such a dynamic friendship in a way that you don’t really see that often in life, let alone on TV. He is a coworker, and people say father figure, but he’s so much more than that. He’s a friend, a mentor, he’s hilarious. I just feel so special to have such a unique, dynamic relationship with this person. And obviously that shows up on camera and it’s nice. It’s really special.” (x)

“From the first interrogation scene with Skye, after we pulled her out of her van, there was just something different about Chloe Bennet. And the way she has a realness and a fire to her as a performer. There are a lot of great actors to work with on that show but the through line of that relationship, that friendship, that family-type relationship… people say father/daughter, and it definitely has that in it, but I think, like my relationship with Chloe, it has so many permutations and it isn’t that simple. Where she’s helping and teaching and rescuing me as much as I’m doing that for her. For me, it was that part of the show where I grew the most as an actor and as a human,” says Clark Gregg. (x)

This relationship has always been one of my favourites on the show and one that’s felt very close to my heart. Maybe that’s due to the loss of my own father and watching a character I love and relate to find that relationship, I don’t know. But I’m grateful that we got one last moment between the two of them. The atmosphere is warm and supportive, and they exchange a few meaningful words before parting. Daisy tells Coulson that he’s still needed out in the world, finding new recruits for SHIELD, commenting on one final thing that has come full circle in this final episode: Coulson was the first person to believe in her, which ultimately led to who she is today and now she is following in his footsteps, the first to believe in her sister (discovered in the alternate timeline) and guiding her on the road to becoming a SHIELD agent. It’s a very emotional moment, even as the actors carry it off effortlessly.

Coulson leaves and Daisy takes a moment to look around at all of the empty chairs. But it’s not the end. She evidently has ongoing secret communications with Simmons and they’ve promised to meet up as a team at the same time and place every year (although, in my head, they meet in various combinations between those full team gatherings). Then she removes her communications device and we discover that she’s on a spaceship – the commander of said spaceship – with Daniel Sousa (her new, taking-it-slow-but-utterly-head-over-heels-for boyfriend) and her sister, Kora. And the last we see of her is the three of them staring out at a stunning nebula.

(Apparently the nebula was never officially named but Jed Whedon, writer of the episode, left it as: “The three look out at the Nebula, an otherworldly multicolored cloud of space dust. A new family.” (x) That made me super emotional: the show began with Daisy searching for her family, finding a completely unexpected family in SHIELD, and the show ends with her building a family, or an extension of her existing family. So that quote felt very special.)

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In these final scenes, there’s something different about Daisy. Yes, she’s still Daisy – there’s always been something incredibly consistent about her as a character, right from the beginning – but there’s also something we haven’t really seen before. There’s a sense of calm, a sense of peace. She knows who she is, she has complete faith in herself and her abilities, and she’s surrounded (physically and emotionally) by people who love her and support her. As Chloe Bennet says, “There’s a lot more groundedness within her.” She’s grown into someone her season one self could never have imagined and it’s incredible. I found it more inspiring than I can put into words, considering how much of myself I see in her as a character. Her ‘ending’ gives me hope.

I got caught up with season seven a few days before the finale. It was clear the finale was going to be incredible and I just felt that I wanted to do something to commemorate how much the show and how much Daisy meant to me, how much of an effect they’ve had on my life. I thought about it and decided that I wanted to get a daisy tattoo: to remind me how much this show and this character have meant to me and helped me through hard times; to remind me of Daisy and all of the things about her that inspire me, like her determination, her strength, her resolve to help people, and so on; to honour the love of superheroes I share with my Dad and that connection we will always have.

At some point between that moment and the finale, Chloe Bennet posted on Instagram, asking for suggestions as to what she should do with all the stuff she’s collected from her time on the show. I replied with some ideas but I also thanked her for all the show and Daisy have done for me, as well as my plan to get a daisy tattoo. And then – on the day of the finale, a plan she’d apparently had for a while – she posted a couple of photos on Instagram… of herself getting a daisy tattoo.

I couldn’t believe my eyes. It put the biggest grin on my face. I loved the idea that we’d both had the same thought process over commemorating Daisy, although obviously Chloe Bennet’s relationship to Daisy is on an entirely different level to mine. In one interview, she said: “I definitely would [play her again]. I mean, I have such a soft spot for her. I started shooting the show when I was 20, and then I finished when I was 27. To get this time right now, in isolation, to kind of contemplate the past seven years and how much it’s meant to me – it hasn’t really hit me yet that the show is over, so it doesn’t really feel like I’m done playing her yet.” And in another, she said something similar: “I don’t feel like I’m done playing her. I feel like there’s room in the Marvel Universe for more Quake. So hopefully you’ll see that happen!”

When this fan-made trailer appeared, at least half the internet fell for it, believing that a Daisy centric show was in the works. You’ll see why when you watch it.

It’s stunning, a perfect summation of Daisy’s story so far and an exciting look at how her story could continue. As much as I’d love a show about Daisy, or really just any extra Daisy content, the idea does make me a little nervous. She’s been so beautifully developed as a character that I’m not sure I’d trust her with anyone but Jed Whedon and Maurissa Tancharoen (the main showrunners of the series from the start). But knowing how much Chloe loves Daisy, I doubt there’s any reason to worry; Daisy couldn’t be in safer hands. I love Chloe Bennet and find her hugely inspiring too but I think I’ll save that for another post, otherwise we could be here forever…

And as I said, I probably wouldn’t have had any of this without Dad. And while the loss of him – that scar, that hole – will always be there, having this thing that he loved so much – this love that he passed on to me – back in my life has been a healing experience. The characters, the stories, and the lessons they teach us are his legacy to me and I’m grateful for whatever it was about Agents of Shield that made me feel able to engage with these worlds again.

Today would’ve been his birthday and while I have no way of knowing what life with him in it would have looked like, I like to imagine that we would’ve spent the day together: swimming in the morning (another thing we often did together) and then spending the afternoon and evening curled up on the sofa, taking turns choosing episodes of our favourite superhero shows. And I have no doubt that a great deal of them would’ve been from Agents of Shield.