A Week In My Life (September 2023)

Posted on November 26, 2023

Somehow, getting a puppy has made my life both more and less busy. I’m constantly on the move – following her around, chasing her, playing with her – but my life is quieter – she’s so young and still getting settled so I don’t want to leave her – so I may have found a somewhat unusual way of doing less, out in the world at least. Having her around means that my day-to-day life ricochets from full on and exhausting to quiet and chilled out. It’s been a bit of an adjustment but I think it has given me a chance to recoup a bit. A bit. I’m still trying to get a lot done – I don’t think my relationship with productivity is particularly healthy – but Izzy comes first, especially while she’s so young, so this period of time with all of this change has been more than a little disconcerting. Izzy is, of course, worth it; it’s just taking me a while to adjust.

The week in this post started on Thursday 14th September 2023 and ended on Wednesday 20th September 2023.

THURSDAY

Since the arrival of Izzy, I’ve been brutally forced to become a morning person, having previously slept in until after nine (usually due to staying up far too late – Revenge Bedtime Procrastination is my nemesis). But Izzy is an early bird and takes great pleasure in waking me up at six thirty and trust me, if you’ve never had a young puppy, you need to get up and sort them out; she’s still learning to use the puppy pad and a few extra minutes with your eyes closed is not worth the potential clean up.

So I dragged myself up, took her downstairs, and gave her breakfast. I managed to inhale some fruit salad (my current hyperfixation food – something I’ve never experienced before) while she ate and then put down the cat food, removing myself and Izzy so that they could eat in peace: Izzy has a bad habit of bouncing up to them with great but apparently terrifying enthusiasm, which has them running for the cat flap; she’s desperate to play with them but I think they interpret that playful behaviour as scary and unpredictable so the bonding is going pretty slowly (one of the cats, our matriarch, does put her firmly in her place though – one down, four to go). Upstairs, I played with Izzy for a bit, letting her burn off some energy and then did my Duolingo practice and physiotherapy exercises.

Mum had taken Lucy to the vet for a check up post a small surgery she had a few weeks ago and she came back with a clean bill of health. We released her and then raced out of the door, got in the car, and headed for the hospital for my hydrotherapy appointment. The drive gave me the chance to just sit and reply to the various messages that needed responses; I feel like my brain has been so full recently that it’s been hard to focus on smaller tasks, like messages and emails. Maybe it’s an ADHD or Autism thing; given how close I’ve felt to burnout over the last few months, it wouldn’t surprise me.

I was a little late for the appointment because we couldn’t find anywhere to park, disabled space or not, until the last possible second and then, when we got in, we discovered that the towel was still at home, hanging on the radiator after swimming the night before. Fortunately, they were prepared for that eventuality. But apart from those few mishaps, it was a really good session. The exercises I got about eighteen months ago – between finding the right pool to work in and waiting for the follow up appointment, it’s taken this long to get to this point – have become easy so the hydrotherapist suggested a few ways to increase the resistance. Between those and the physiotherapy exercises, I’m working pretty much my whole body so we added a series of core exercises, given that that area of the body is a real weakness for people with Hypermobile Ehlers-Danlos Syndrome; it made sense to be putting extra work into those muscles. We ran through each of them in turn and the hydrotherapist (the same one I’d worked with last time) said how impressed she was at how hard I’d clearly been working, how committed I’ve been (apparently it’s not uncommon for people to just do the exercises a few times and then, unsurprisingly, not progress). That meant a lot to me because I have been working really hard over the last year, even when I didn’t want to. I obviously didn’t do it for the praise but it was really nice to have the work recognised and acknowledged by someone who knows what they’re talking about. With the new exercises under my belt, I feel really good about the work I’ve done so far and really motivated to keep going.

Back home, Izzy was delighted to see me, which was very sweet; she was positively trembling with joy. I let her out of her crate (we are attempting to crate-train her and she’s taking to it fairly well) and we played with various toys for a while before I crashed on the sofa and accidentally fell asleep; between the hydrotherapy and chasing after Izzy, I was exhausted.

I slept for a couple of hours and then dragged myself up for some food and caught the train to London. Barely a week earlier, I’d joined an online creative workshop run by the arts organisation, Magical Women (run by and for neurodivergent women and non-binary individuals). The atmosphere was really positive, everyone was really nice and supportive, and I felt really included, despite it being my first session. After that workshop, I got an invitation to the private view of the founder’s new exhibition, Biodiversity of Sites and Sounds by Elinor Rowlands. I didn’t have much experience of the organisation and the people involved but they felt like a group I wanted to be a part of so I rearranged my plans and hopped on a train to London.

The gallery was gorgeous. I love more abstract styles and pieces of art. I love how they’re completely open to your interpretation: what they are, what they mean, and what they make you feel. I really liked Elinor’s work and ended up pouring over the postcards, trying to not just buy one of each canvas.

I met some really lovely people too and it felt like a really safe space with pretty much everyone in attendance being neurodivergent. That was a nice ratio for a change. I was a little disorientated, having gotten lost on the way, and so I was struggling a bit with how to join in the socialising but fortunately everyone was really friendly and I was quickly included in multiple discussions. It was really, really nice and if I hadn’t had to catch a train back home, I would’ve liked to have joined them all in the pub after, most us having stayed until the exhibition closed.

And that was when it all went wrong (and becomes blurry, as meltdown and almost-meltdown experiences often become afterwards). I was standing at the lift with the last group of people when I realised I didn’t have my leather jacket, my favourite jacket and the one that I wear everywhere; it’s a deeply important and confidence-boosting piece of clothing. I retraced my steps and when I still couldn’t find it, I searched the whole floor, getting increasingly more panicked. Given how late it was, there was no one around and my group of people had already left so there was no one to ask. I called my Mum, sobbing and hyperventilating, and she tried to calm me down enough to make a plan, but then I was locked out of the building and I was overwhelmed with the feeling that my jacket was gone forever: I could’ve left it somewhere inside or on a wall during one of the many moments I’d stopped to check my map app. I was frozen: I couldn’t think and I was struggling to talk; I couldn’t take deep breaths so the hyperventilating continued; I couldn’t move but I was shaking; I felt completely overwhelmed by every light and every sound and every movement, like a car or a motorbike or a person, startled me, feeling so sudden and completely unpredictable and like I couldn’t keep track of them all; I felt extremely vulnerable; and I felt so ridiculous and stupid (I remember calling myself ‘a fucking idiot’ over and over again, for losing the jacket and for caring about it so much in the first place). I had to wait ages for a bus back to the station and despite the amount of people, no seemed to notice my trembling or hiccuping sobs.

Somehow I managed to get back to the station and catch a train home. Between the lack of jacket and the exhaustion of the almost-but-not-quite-meltdown, I was desperately tired and quickly got cold. The journey felt very long but eventually we pulled into the station and Mum was waiting for me at the barrier, Izzy bundled up in her blanket like a little puppy burrito. Despite everything, the picture brought a smile to my face.

Back home and snuggled up on the sofa with Izzy, I continued my New Tricks rewatch (an old favourite – although there are moments that would never have been written now) for an episode or so before going to bed; I just needed some time to decompress (and get warm) before I tried to sleep.

FRIDAY

I struggled up early and sorted out Izzy: she’s doing so well that I can’t really complain but I’m finding the aggressive shift from ‘late sleeper’ to ‘early bird’ pretty tough. Anyway, as I said, Izzy was really good, eating all of her breakfast out of her bowl (rather than refusing anything but hand-feeding) and using the puppy-pad perfectly. She’s such a good girl and she’s so adorable and happy when we praise her: she’s so pleased with herself.

I had a quick shower and then headed out for a meeting with a mentor I have as part of an organisation dedicated to supporting autistic individuals post-education. For a number of reasons, we’ve been very slow to get started but now we’re finally meeting on a regular basis. She’s really nice and because she’s neurodivergent with a lot of the same health problems as me, she understands me in ways that a lot of people don’t. I’m still not sure about how the sessions are supposed to help but we’re still getting to know each other and I guess it will become clear in time. This doesn’t really feel like the time or place to discuss the sessions, if only because we’re still so early in the process, but there was one thing I wanted to note: we’ve changed rooms and in this new room, there’s carpet on the wall – presumably for soundproofing – but it looks like grass, dark green and shag-like pile, and I was instantly compelled to touch it. There was just something so pleasing about it and when Mum picked me up at the end, I… expressed my desire to have a similar set up. Very enthusiastically. I do need to soundproof my space better to improve my vocal recordings after all… She’s unconvinced.

Back home, I briefly caught up with two of my parents over FaceTime before having a lie down on the sofa, Izzy curled up with me. I was completely exhausted and the gentle, repetitive stroking of her soft puppy fur almost put me to sleep. I’d hoped to get some writing done before my friend, Dan, arrived but apparently I was just too tired. And Izzy is deeply distracting (which I’m sure she knows and relishes). But such is life. Izzy was delighted to see Dan and Dan was delighted to see Izzy; he really loves her and she really loves him. It’s very cute. They were instantly playing and it was very enjoyable to watch.

We’d had vague plans to continue our Fringe rewatch etc, but we literally ended up playing with Izzy and chatting. I’m not complaining though; it was really, really nice. Something that I love about our friendship is how we can just talk and talk about pretty much anything – from the newest odd facts we’ve learned to how our week has been to some of the deepest stuff possible – for hours and hours and while we can be deeply serious, we also laugh a lot. It’s really lovely and I’m so grateful for this relationship that we’ve built.

So it ended up being a very chilled out day. We dropped Dan off at the station early evening and then came home and stretched out in the living room. I was really tired but it was much too early to go to bed so Mum and I continued our New Tricks rewatch and I finally posted about Izzy on social media…

We had a particularly good fish and chips for dinner and although I tried to do some writing, I really didn’t achieve much. I couldn’t concentrate and I just couldn’t get comfortable; it certainly doesn’t help that the desk I use when sitting on the sofa has all but collapsed and basically pins me to the sofa. I need to get a new one but I haven’t found any that have adjustable legs, which is kind of key in my experience. Hopefully one will pop up in my searches soon.

Izzy did interrupt the peace of the evening when she swiped the kitchen roll off the sofa and proceeded to unroll it all over the carpet. It was very funny – she was clearly having an absolute ball – but it took ages to persuade her to let go and tidy it all up. Again, I can’t really complain: it was so cute and Izzy is so excitable and, on the whole, it wasn’t a huge hassle. It’s hard not to be touched by her innocent wonder and pure excitement about the world. Everything is fun; everything is an adventure or a game.

She had a good ten minutes of zoomies, which is always very funny and very adorable. Having said that, it did then devolve into barking and nipping, which I was not pleased with, and I don’t enjoy telling her off, even though I know it’s what she needs to understand what she can and can’t do. I got ready for bed, letting her run and run and run – hopefully burning off the last of her energy (it’s not long until we can take her outside and to the park, thank goodness). I was in bed and finishing the last of my diary notes when she finally calmed down and came to me, asking to be lifted onto the bed. She wandered around for a little bit and then stretched out across my legs, falling sleep. Little weirdo. It looked so uncomfortable but she seemed perfectly content. Having her there was very comforting: I was feeling very overwhelmed and unprepared for everything coming up and her heartbeat, her breathing, and her warmth were very soothing. It didn’t solve anything – that would be a pretty big ask – but I did feel a little less panicked for her presence.

SATURDAY

Izzy got me up early, as is my new normal, and then we settled into the living room, where I threw toys for her for a little while. Then I got my new blog post up (Introducing Izzy!) and then had a shower and got dressed before taking Izzy out to the vet for her first vaccine. She handled it really well. The vet also advised that she get her microchip – in case she rushed out or got loose between the house and the car, for example – so we did that too. She wriggled a bit at that but it was a really big needle; it must’ve hurt! But she got lots of treats and attention and it wasn’t long before she’d recovered. They also weighed her and she’s only 1.4kg! She’s tiny! And with that, we headed out, buying her a new toy on our way: a dragon that may or may not be bigger than her.

Back home, I did some admin work, including posting about my upcoming gig, which I’m really excited about…

After a couple of hours, I had to stop and have a nap. I’m so tired at the moment that a middle-of-the-day nap is pretty vital in order to stay functional and, to be honest, I’ve been so tired that I don’t really have a choice in the matter. I can struggle to stay awake longer, not getting very much done, or I can surrender to sleep and hopefully wake up with a bit more energy to keep going. This started with Izzy’s arrival and I think the early mornings (and lack of change around going to bed late) has been catching up with me. I guess it’s fortunate that my life is generally flexible enough to accommodate that adjustment.

I spent the afternoon working on blog posts and then had an early dinner before signing in to the new Amanda Tapping livestream through The Companion – I’d like to write it up like I did the last one, but this post isn’t the place for that. It was as lovely an experience as it was last time: Amanda is such a warm, open person and such an engaging speaker, able to move seamlessly between funny and thoughtful. But most of all, she’s so honest and talks about really vulnerable moments and feelings, sharing them with such trust; it’s hard not to feel honoured and even a bit overwhelmed by that. The relationship she has managed to cultivate with her fans – over decades and through multiple different projects – feels so special and so sacred, one that she holds as much reverence for as we do. She and the host, Rebecca, talked for a while, about mental health and self care, Amanda sharing the story of her daughter leaving for university and her emotions around that, how much letting her friends be there for her has helped both her mental health and their friendships. She talked about crying a lot, mostly in positive terms, and how helpful it can be. But the thing she talked about that hit me hardest, that resonated most, was when she talked about self worth: she talked about how low her self worth had become and how she hadn’t felt worthy of taking care of herself, that she had had to work really hard to feel worthy of self care again. That made me very emotional: I hate the thought of her feeling like that but, again, I felt somewhat overwhelmed by the fact that she was sharing that experience with us. I feel very lucky to have found her all those years ago, to have such an amazing person to look up to.

Then, in response to questions from people watching, she talked about various topics, including how she’s struggled with guilt as a mother, how she would – and sometimes still does – talk to her Mum as if they were talking on the phone when she misses her (she died in 2021), and how she practices self care. And then they were having to wrap things up. It went by so fast, everyone agreed – Amanda, Rebecca, and multiple people in the chat. But it was really lovely and really special and they’re planning to do another one soon-ish.

Having met Amanda pretty recently at London Film & Comic Con and having felt so buoyed by the experience, I couldn’t resist getting a meet and greet for after the livestream; the money was going to charity after all. So, after the livestream ended, everyone with a meet and greet (a short Zoom call with Amanda in groups of four) logged into Zoom to chat until our time slots. I’ve never done anything like that and I didn’t know how to make it work and I was starting to get really panicked about not being able to get into the call when I finally figured it out; once in, I had to just sit for a little while, trying to calm down and compose myself. I hadn’t known what to expect but (fortunately for my anxiety levels) it was really nice, everyone chatting and holding various pets up to the camera; there was something so communal and easy about it, all of us connected through our shared love of Amanda and her work. But then suddenly it was my group’s turn and I was overwhelmed by anxiety again. I didn’t know how it would work with four people, especially with so little time, and I didn’t want to ‘waste’ my opportunity to talk with her. I have such respect for her and she means so much to me that I really didn’t want to make a fool of myself or just say something completely forgettable. But fortunately, she always makes it so easy to be open, even though I was feeling so anxious and fragile; it’s the same on screen as it is in person. And having Izzy in my arms was both good for my anxiety and as a conversation starter: Amanda and I joked about the extremes of our dog owner experience, Amanda’s dog being a huge Bouvier mix and Izzy being a tiny Pomchi (Riley was apparently about 8.5kg at 8 weeks while Izzy was barely 1kg at the same age and likely won’t get bigger than 5.5kg). Very different experiences. We did talk about more than our dogs but I’m still turning the rest over in my mind. I don’t know how she does it but she manages to get everything else to fade away, making it so easy to talk to her, and it always feels like you have her complete attention, which is a bit overwhelming but also so moving and special. And then, all of a sudden, it was the next group’s turn. I knew the meet and greets weren’t long but it was pretty jarring, especially given the time it had taken me to get settled. But it doesn’t matter; I’m really grateful for the experience.

I have such intense anxiety when doing things like this that my adrenaline is sky high during the event and for a while after before crashing spectacularly. And even before that happened, I was exhausted. So I tried to be sensible and, instead of trying to keep working, I had some chill time in front of the TV and had a little scroll through social media. Having drastically reduced my time on it, I actually enjoy it more now, for the most part.

Given how tired I was, I actually went to bed fairly early – for me, at least. Izzy was clearly having her nighttime zoomies and, no matter what I did, she couldn’t seem to stop running circuits around the living room. It’s very cute and very funny – she seemed to be having a ball, pun kind of intended – so I left her to it and got ready for bed by myself. It wasn’t long until she joined me and snuggled up as close as she could get, another adorable habit of hers. Soft and warm, she’s lovely to cuddle up with.

Unfortunately, I couldn’t sleep and was still awake at two. I took a break from trying to sleep for a while, looking up poetry and writing challenges online for inspiration, and then eventually managed to drift off, dreading the early start.

SUNDAY

Izzy clearly hadn’t noticed my nighttime restlessness and was licking me awake just after seven. I struggled up and got her sorted with breakfast and a new puppy pad before we settled in the living room. We played for a while – she picked up ‘fetch’ so incredibly fast – and then she curled up for a snooze while I did my physio and Duolingo and other daily tasks before getting down to writing for a bit.

Me and Izzy spent most of the day like that, taking breaks for meals and playtime. It was a nice quiet day, which I appreciated after the short night.

Late-afternoon-early-evening, I headed to the pool for a swim. Without too much effort, I managed to swim a kilometre – the longest I’ve swum in years – and do the hydrotherapy exercises that are possible in that pool. That was really invigorating and I was really proud of myself, especially for the kilometre: it’s really clear evidence of how hard I’ve been working over the last eighteen months and what a difference that work has made. So, similarly to how I felt after the hydrotherapy appointment, I feel really good about what I’ve done so far and really motivated to keep going.

Izzy was practically vibrating with joy when we got in and I released her from a crate. She’s so funny: she does actually like it and often takes herself off to sleep in there but god forbid someone shuts her in. She gave me and then Mum a hero’s welcome – which is more than a little bit ridiculous but I’m always happy to cuddle with her – before busying herself with one of her toys and I settled down on the sofa again. I put on The Lincoln Lawyer – what a lovely show it is and one of my favourite background noise soundtracks – and did some more blog writing before spending the rest of my evening practicing for my show on Wednesday. I know I’m practicing more songs than I need but there are just so many that I want to play; I’m going to have to make some very reluctant editing of my setlist at some point.

I went to bed feeling exhausted and sore: my knee was hurting after the swim and I was somewhat concerned I’d been a bit overenthusiastic when doing my hydro exercises. My tailbone was also hurting, which is apparently a very common problem with hEDS (the gift that keeps on giving, she says sarcastically). So I took some painkillers and went to bed, feeling less than optimistic about the night ahead. Both of those pain issues have been known to wake me up throughout the night.

MONDAY

As predicated, I slept badly, the pain in my tailbone or one of my knees waking me up every time I moved or rolled over. It was miserable: trying to get back to sleep each time was miserable and waking up completely exhausted in the morning was miserable. The only not-miserable thing about it was that I woke up before Izzy and managed to get some snuggles in while she was still warm and soft and floppy; those moments with her are especially lovely.

Mum was up early and offered to do ‘the morning shift’ and I accidentally went back to sleep, getting another three hours or so, which I definitely appreciated. Izzy greeted me with great enthusiasm when I managed to get up, still sore, and tried to help me with my physio exercises (reduced due to the pain), which – unsurprisingly – wasn’t particularly helpful. But it is always very cute. Then, after some breakfast for me, we snuggled up together while I caught up on some emails and messages. Izzy was getting sleepy, ready for her mid-morning nap, and was beyond adorable, curled up at my elbow. It was very tempting to just abandon my to-do list and cuddle up with her. It wouldn’t be the first time. But I resisted the urge and actually got some work done.

When I reached a good stopping point, I went to have a shower, sticking my head into my Mum’s room as I passed. Four of the five cats were curled up on Mum’s bed. They love the waffle of my Mum’s duvet but I’m pretty sure the biggest draw is that it’s one of the few comfy places that Izzy can’t reach and so they can chill out undisturbed. I know it’s a process and that they will all get used to each other but I do miss them since Izzy is currently glued to me and they’re avoiding her. I’m also struggling with the fact that she’s obviously creating stress in their otherwise blissfully stress-free lives, the result of a decision I made. I know that it’s super early – too early – to be stressing about whether they’ll ever get along but I can’t help it. I’m trying not to but it still creeps in.

Back in the living room, I logged into Zoom to attend a writing workshop, one of a series that I’ve been really enjoying lately. My absolute favourite workshop series ended a while back and I’m waiting for their next project to start but this one is really great too; it’s probably my second favourite of the ones I’ve done, certainly as a series of workshops (I’ve done some fun one off ones as well). These ones have more specific prompts but, if your writing wanders off in an unexpected direction that you’re really excited about, you’re encouraged to just go with it and see where it takes you. The overall prompt for this workshop was ‘door,’ which then became more specific after the opening exercises and free-writing. An idea came to me very quickly and the words just flowed so I just let the story happen. I feel like I’ve said this in another post recently but, as much as I love and feel connected to songwriting, I’ve been really enjoying dipping my toes in the fiction pond again.

When that finished, I had some lunch in front of The Lincoln Lawyer before moving to the piano. I spent several hours reworking an old song; everyone loves it and I do too but I just don’t think it’s saying what I want to say quite as well as it could. So I worked on refining it, making each line count and tie into the overall metaphor. I wrote the first draft several years ago now and I know I’m a better songwriter now; I’m confident that I can turn it into a stronger song.

My uni was hosting a songwriters’ circle that evening and although I really wanted to go – several people I really liked were playing – I just didn’t think I had it in me to go up to London again before the show on Wednesday; I needed to conserve my energy and chances were that the train journeys would trigger pain that I wouldn’t have recovered from in time. So I grudgingly gave up on that plan and stayed home, practicing my songs, eating dinner in front of Hijack with Mum, and snuggling with Izzy. She’d been quite hyper and destructive during the evening but when she finally calmed down, she was warm and soft and floppy in my arms. It was very cute and I couldn’t help laughing at the silly faces she made in her sleep…

I tried to get to bed while she was still sleepy but it didn’t work. She got the zoomies (plus she was biting a lot, which was exhausting) so I left her to it and did some diary writing while I waited for her to run out of energy and settle down for bed.

TUESDAY

I kept waking up throughout the night, my tailbone hurting every time I turned over. Every time, Izzy was snuggled up as close as possible, pressed into my neck, which was very cute. When I woke up for the final time, a little before my eight thirty alarm, she was still asleep and I was able to pull her into a sleepy cuddle, which was just too adorable for words. It was definitely a good way to start the day.

When Izzy woke up properly, we went downstairs as per our morning routine. Then I did some blog writing before having a shower and some breakfast. I had a physiotherapy session at twelve and we went through my current exercises, cutting some, adjusting others, and adding new ones. My physiotherapist is great and really understands hypermobility, which is so helpful; that knowledge makes for a much more productive and motivating experience.

When I got home, I found two of the cats – Sooty and Tiger – curled up together on a chair. I swear they were giving me some serious side-eye over Izzy. While I do feel bad about the stress she causes them, they do seem to have bonded more closely since she arrived, which is really lovely to see: they hang out together, they snuggle up together, they back each other up when Izzy appears, they check in with each other… It is really sweet. Hopefully things will settle and we’ll find a new normal soon.

I went to the pool mid afternoon and did my hydro exercises as well as managing a bit of a swim. I had a bit of a break when I got home, watching a film (Luckiest Girl Alive – I didn’t love it but I thought the performances from Mila Kunis and Chiara Aurelia were really good) and doing some blog post writing. Then, after an early dinner, I spent several hours practicing for the show and deciding which songs to play, which to hold in case there was time, and which to cut. I didn’t end up going to bed until after one; I’m very glad we don’t have neighbours on that side right now. But even that late, I couldn’t sleep; I think I eventually drifted off around three.

WEDNESDAY

Thank god for my Mum. She sorted out Izzy and let me sleep in (I’d texted her to let her know how much of a struggle it was to get to sleep and that it was making me anxious about managing the day and the gig) so that I would have enough energy for what was going to be a fairly strenuous day. I managed to sleep until almost eleven – which is unheard of these days – and I felt pretty good when I got up. I did some social media stuff and my morning habits and so on, trying to stay relaxed about getting to London and playing the gig – I was mostly excited but it’s also been a while since I’ve done a long set at a gig so I was nervous too. Finding the cats snuggled up together and having some time with them was a nice little break from everything….

I spent most of the day alternating between practicing and playing with Izzy. And sometimes I did both at the same time…

She’s so adorable in her confusion over musical instruments.

And I got ready, of course. I had a shower and did my hair and make up. Getting dressed was not as straightforward though: the outfit that I’d decided on suddenly felt wrong and I got very upset, feeling fat and ugly and unfit to be perceived by anyone. I tried various different outfits and different combinations but the damage was already done and it took more energy than I thought I had not to crawl under my duvet and never come out, to get dressed anyway, and leave the house. It was horrible and it wasn’t a bad thing that I had a long drive in which to wall off all of those thoughts. For the night at least.

The drive was long and slow. It had been pouring with rain for most of the day and it just kept raining and raining and raining. It slowed us down on the motorway and caused heavy traffic when we finally got into London. Door to door, it took over three hours – much longer than usual – and even with the buffer we’d built in, I was late for my soundcheck. Fortunately Luce, organiser of the event and my very good friend, had everything under control and made it work (she was a lot calmer than I was when I finally arrived). I got a quick soundcheck in and then people started filtering in. Given how horrendous the weather was, I wasn’t sure how many people would show up but I was almost overwhelmed with joy when so many friends, family, and family friends came. Having some of my closest friends there, including one friend who was moving abroad in mere days, made it so special; I cannot articulate how much it meant to me.

Cora played the first set and it was really cool to see her perform again, to hear the growth in her songwriting, having not seen her play for a couple of years (the last time was, somewhat bizarrely, a show where we were both on the same bill as well). Her songs are beautiful but there was one in particular that I just fell in love with; Cora hasn’t shared it yet and it’s her story to tell so I won’t spoil it but should she release it, I’ll be sharing it everywhere because it was absolutely stunning.

The show went really well and it was so, so special. I’d spent a lot of time thinking about the songs I was going to play and ended up with a mix of old favourites and new ones that I’m really excited about. I got to play the piano for one of them and we even had a fun little sing-a-long at the end, which was so lovely. It felt so, so good to perform again, especially with such an engaged and receptive audience.

Luce was a great host and we had some great conversations about the songs, the writing process, the inspiration, songwriting in general, and so on. I always love to talk about songwriting but I feel like our discussions between songs were really rich and we found ourselves in really interesting places – likely due to our friendship, the long conversations we’ve had, and the stories (both joyful and difficult) that we’ve shared with each other. It doesn’t feel like a stretch to say that much of the audience listening felt the same way, given the vulnerable and touching comments in the review notebook.

You can probably tell from this video how much I love talking about songwriting, as I said a moment ago…

It was over much too quickly and I lingered for a while, packing up and talking to people and hugging friends and family goodbye. But eventually I had to accept that the night was over and that it was time to go home, especially since my Mum was ever so kindly driving me home; it wouldn’t have been fair to make her wait any longer. So we piled into the car and headed home. I had promised to keep her entertained in the car but the adrenaline crash hit me pretty quickly and we’d barely gotten onto the motorway when I fell asleep. I woke up as we drove into Brighton and dragged myself into the house; Izzy was delighted to see us, which was very sweet. I barely had the energy to get my make up off before crawling into bed, Izzy curled up beside me.

What a week… There were some really intense highs and really intense lows and I’m completely and utterly exhausted. I’m going to need some quiet time now, just to decompress and recharge my emotional and social batteries, let alone my physical one (not that that ever seems to charge properly).

NOTE: Considering the dates of this week, I know I’m very late in posting this. I’ve just had no energy and getting it finished and tidied up for posting seemed to take forever. But it has several moments that I really wanted documented, the good and the bad: the good being the Amanda Tapping livestream and playing such a lovely show; the bad being the meltdown and the body image stuff; as well as the normal of living with pain and managing hEDS with hydrotherapy and physiotherapy. So I wanted to get it finished and posted and I’m very glad to have finally managed that.

Category: adhd, animals, anxiety, autism, body image, chronic fatigue, chronic pain, emotions, event, exercise, family, favourites, food, heds, hydrotherapy, meltdowns, mental health, music, sleep, special interests, treatment Tagged: 2023, a week in my life, actuallyautistic, amanda tapping, art, art gallery, asc, asd, autism, autism spectrum condition, autism spectrum disorder, autistic, autistic artist, autistic burnout, autistic meltdown, autistic singersongwriter, autistic songwriter, blogging, body image, burnout, cat, cats, cfs, chronic fatigue, chronic fatigue syndrome, chronic pain, cora rebel, day in my life, day in the life, disability, disabled, dog, duolingo, eds, ehlers danlos syndrome, fatigue, fibromyalgia, friend, friends, friendship, fruit salad, gig, gigging, guts, heds, hydro, hydrotherapy, hydrotherapy exercises, hyperfixation, hypermobile, hypermobile ehlers danlos syndrome, hypermobility, language, language learning, magical women, meltdown, mental health, nap, neurodivergent, new puppy, olivia rodrigo, performance, pet, pets, physiotherapist, physiotherapy, pomchi, practice, puppy, puppy training, revenge bedtime procrastination, self worth, september, show, singer, singersongwriter, sleep, songwriter, songwriters circle, songwriting, stories in song, swimming, the companion, week in my life, writing, writing prompt, writing prompts, writing workshop, zoom

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A Week In My Life (July 2023)

Posted on September 30, 2023

I really overdid things in June and pushed myself harder than I could really handle; I was just so overwhelmed and drained and exhausted so, in July, I tried to take things more gently, to varying degrees of success. Having said that, I did have some completely one-off opportunities booked that I couldn’t – and didn’t want to – miss. It’s hard, relearning to balance doing things with recharging and building my stamina. There are still so many things I want to do, especially see my friends and schedule more sessions with my favourite cowriters but I just really struggle to make things fit, and make things fit without absolutely crashing and burning, something that has happened repeatedly since I started taking the Phenelzine – and therefore doing things – again.

The week in this post started on Monday 3rd July 2023 and ended on Sunday 9th July 2023.

MONDAY

I woke up before nine and worked through some of my morning habits, like drinking water and my Duolingo practice, before getting up and getting in the shower. Then I settled in the living room and got to work on my current blog post, alternating with closing some of the many tabs I have open and trying to tidy my laptop up a bit. My Mum had gone in to town to get her laptop fixed and she’d asked about mine and it’s new habit of randomly turning off at any given moment. They said that, when it was made in 2015 (I got it later, refurbished), running it was like asking it to function at 100% but now, eight years later, running it is like asking it to run at 200%, which is obviously problematic. And given my propensity to work on about seven different things at once (with so many tabs open), I’m honestly surprised that it’s survived this long. They basically said that it’s not going to last much longer and I’m going to need to get a new one soon: the dreaded words with the Taylor Swift ticket sales coming up. Even though I’ve been saving for these concerts and have savings for moments like these (when something necessary, like a laptop, needs to be bought), the money anxiety was sitting in my stomach like a slimy, writhing creature.

Early afternoon, one of my friends came over to visit. She’s probably my oldest friend; we met when we were thirteen and we’ve been really close ever since, even though we don’t see each other as much now, living in different cities and working and so on. But our friendship has been one of the great pillars of my life; we always pick up right where we left off and there’s never any awkwardness. It was so, so lovely to see her, to hang out with her even though it wasn’t as long as we’d hoped for, but we got to catch up properly and we had a good laugh. I miss her more now that she’s further away, further away than she ever has during our friendship; it’s so much harder to see each other. But it’s comforting to know that our friendship has never really changed, even if it has evolved since we were at school and saw each other every day.

When she left, I made sure to take some rest time. Mum and I were both hanging out in the living room; she was working on her laptop and I spent a couple of hours continuing the work of cleaning up my laptop. We’ve been half watching House at times like this and we finally finished it, watching the ‘making of’ at the end. For the most part, it was fun and interesting but there was one part that really got under my skin: one woman was talking about the creation of the character of Gregory House and how the original idea was that House was in a wheelchair but that that was ‘too difficult’ so they changed it. I’m sure she meant it from a filming and set perspective and they eventually got to the idea of him using a cane, which I do think was a better choice for storytelling given the character, but the way she talked about it just felt really ableist and insensitive. I know I get triggered by that ‘too difficult’ and ‘too complicated’ talk but it just felt really uncomfortable and, at the very least, borderline offensive to wheelchair users.

My Mum and I had an early dinner together and finished His Dark Materials while we ate. It was the first time Mum had seen the end and my second. God, the end just wrecks me; it’s so heartbreaking. Dafne Keen and Amir Wilson’s performances (and, of course, Ruth Wilson’s – I love her) are just incredible. I think series three is my least favourite, just because there’s so much happening that needs to be shown in order for the end to make sense but, when any of those three are onscreen (plus the scenes between Ruth Wilson and James McAvoy), it’s breathtaking.

I was freaking exhausted but I made myself go and do my hydrotherapy anyway. I tried – I really, really tried – but my back still hurt and I was so exhausted that I didn’t manage as much as I usually do. I was so tired that I felt like, if I’d rolled over and floated face down, my body would have been too tired to care and I would’ve just drowned. But going was better than not going and I had a nice time with two of my parents swimming too.

Back home afterwards, I put on Doctor Who, too tired to think any harder about what to watch, and kept working on my laptop. It was a struggle though because I kept getting distracted by the cats playing with their new donut toys, plus I kept falling asleep sitting up; I was that tired.

I dragged myself to bed, utterly exhausted, but then I was still awake at three for some reason. That was deeply frustrating; I was so tired but I just couldn’t sleep.

TUESDAY

I struggled to wake up, finally managing to drag myself out of bed around twelve; I was just so tired and the lack of decent sleep made me feel heavy and groggy. I don’t know whether it was connected or not but for the next few hours, I had some really miserable stomach problems that meant I couldn’t do much more than lie on the sofa. I felt hot and faint and nauseous and sweat was all but dripping off me. It wasn’t fun but eventually it did recede a bit and I was able to haul myself up and into the shower.

Back in the living room, I spent the next several hours working on blog posts, hanging out with the cats, and dreading therapy. I was just feeling so tired and raw that putting my feelings under a magnifying glass was the last thing I felt like doing. But I went and it wasn’t as bad as I’d imagined it would be: I’d recommended The Anthropocene Reviewed by John Green to her because I related to so many of the feelings and philosophies that Green had written about (my copy, full of highlighted passages and comments scribbled in the margins, is an incredibly revealing insight into my brain, into my emotions and experience of the world) and she’d just finished it so we decided to go through some of the things that had really resonated with me, especially in the context of my mental health. It wasn’t easy but it wasn’t as hard as it could’ve been. I do think our discussion made it clearer than ever that my depression is still hanging around, dark and heavy and cloying.

Back home, I spent the evening working on blog posts and trying to reduce the amount of open tabs on my laptop. For a while, there was some amazing heavy rain and that really helped to lift my mood; I’ve always found it so calming but also really invigorating. If I recall correctly, rain releases a wave of negative ions which apparently relieve stress and alleviate depression as well as boosting energy. I don’t know how much research is behind those findings but heavy rain and thunderstorms always have that effect on me.

I wrote in my diary for a bit and then started to go to bed early but got distracted by the piano. A little fiddle turned into a couple of hours as I started playing old and half finished songs; my early night became a distance memory when I got sucked into writing a bridge for a song I’ve always loved but never managed to finish.

When I eventually got to bed, I quickly planned out my route into London for the next day and then went to sleep around two in the morning.

WEDNESDAY

I struggled up early but kept falling asleep again, which resulted in me running around like a headless chicken as I tried to get ready to leave. I just managed to catch my train and spent the journey catching up with various family members, working on various blog posts, and listening to Maisie Peters’ album, The Good Witch. I’m obsessed with it.

It seemed to take ages to get to Richard (one of my best friends, my most trusted cowriter, and my producer) but I did eventually arrive, exhausted, out of breath, and hot. We hung out for a bit as I gathered myself, catching up and chilling. We were both tired but eventually we got going, settling into his studio to work on some music. We didn’t have a specific plan and ended up writing a new song together, based on an idea that I’d been turning over in my head. It was hard to start with, like we’d both forgotten how to write together after going so long without doing it – it did get easier but I think that, if we can get back to writing together more often, we’ll find our groove again (no pun intended). By the time we had to stop, we’d written a delicate little song based on The Nettle Dress, an art piece with an accompanying documentary.

That done and running late, we raced across town (my joints were deeply unimpressed – although admittedly I shouldn’t have tried to be a hero and just gotten the lift out of the tube station instead of trying to manage all of the stairs) to the O2 Forum Kentish Town for the Maren Morris show. We both love her and we always go to see her together whenever she tours here. My Mum met us there: I had a disabled ticket and she had the accompanying companion ticket since I find these environments so hard (concert accessibility is unbelievably terrible) and she knows best how to help me through them. The O2 Forum Kentish Town doesn’t have an accessible section (which, again, just blows my mind – how can they be a functioning concert venue that hosts acts as big as Maren Morris without accessible seating?!) but they offered me early access so that I could, in theory, get a suitable seat. That was very stressful but fortunately we did get in quickly enough to get a seat that wouldn’t leave me in excruciating pain the next day. The few in total that I could’ve used only fanned my frustration with them as a venue.

Sam Palladio was the support act and he was good but his musical style wasn’t really my taste; for the most part, I couldn’t stop thinking about him as Stoke in Episodes, which was pretty distracting. Ah well. I’m happy to simply enjoy the support slot; becoming a fan of the person filling that slot is a bonus considering they’re not the person you’re there to see.

Maren Morris was incredible, as always, and she played so many of my favourites, including ‘Circles Around This Town,’ ’80s Mercedes,’ ‘The Middle,’ ‘RSVP,’ ‘Nervous,’ ‘Once,’ ‘Second Wind,’ ‘Rich,’ ‘The Bones,’ and ‘My Church.’ Her voice was in top form and she’s such a great performer; it’s always such an amazing experience to see her live. I love how much London means to her, how she never fails to acknowledge how much she loves it. And to honour that this time, she played a brand new song called ‘Get the Hell Out of Here.’ That was really special.

It was a really, really awesome show. She’s such an amazing performer. My only regret was that she didn’t play ‘Humble Quest’ since I love it so much, but then it seems that we got a lot more songs than the rest of the tour did – plus a new song – so I really can’t complain. It is surprising to me though, since it is the title track of her most recent album. (The show had also meant I missed the Song Suffragettes show – and, as it turned out, the last one – which I was sad about because I love or am desperate to see most of the girls playing and see my friends who work the event but it couldn’t be helped. It’s Maren Morris!)

Richard and I hugged goodbye, repeatedly and effusively, before going our separate ways. A short bus ride later and I was on the train home. I was exhausted but I used the time to make sure my Ticketmaster and AXS accounts were linked up and organised, all the information stored clearly and carefully to hopefully make any ticket buying as straightforward as possible. It was a cold train on a cold night and even though I’d sat for most of the show, my joints were so sore (probably from the slightly panicked journey to the venue); I was hobbling by the time I got off the train.

I was very pleased to get home and into my bed but I needed some time to decompress before I could sleep. I was scrolling through BBC iPlayer, looking for something that would soothe the still surging adrenaline. I spotted Wallace & Gromit, consistent figures in my childhood, and ended up falling asleep as those stories played out.

THURSDAY

My alarm went off at the usual time but I ended up going to back to sleep. It was a very slow start to the day but I was just so tired and sore from the night before. I also had a throbbing headache so I figured I was dehydrated, having probably not drunk enough at the concert. I’ve been trying to drink more water (my hEDS comes with Dysautonomia so I’m quickly and easily dehydrated) but the habit hasn’t become ingrained yet and I’d been distracted by the trip to London.

I lay in bed for a while, looking through my photos from the night before. There weren’t many good ones. I would love to get a new camera – mine is probably ten years old now, if not more, and I’m finding myself increasingly unhappy with the quality of the photos – but between the cost of Taylor Swift tickets (fingers crossed that I can get them) and the looming expense of a new laptop (mine is dying a slow, painful death), I can’t afford it, at least not for a while. Hopefully I’ll be able to get one before hopefully seeing Taylor Swift next year.

It turned out to be a hard day. I did manage to get my budget clearly worked out for seeing Taylor (I’d had a rough idea, having been saving since The reputation Tour ended, but it needed to be hammered out, which I’ve now done) but I spent most of the day in tears, stressed and overwhelmed and exhausted; it’s never been clearer that I need a day off, that I’ve been doing too much and need to slow down a bit. The boost Phenelzine gave me seems to have worn off, at least to some degree, and now I’m left with more plans than I have the energy or emotional capacity for. Between the busy weekend ahead, my stress around money, and the fear that I won’t get to see The Eras Tour next year: I’d received a presale code but there was no information about disabled access and when we rang them to ask how to handle the ticket sale, the information was different from last time. It’s different every time. The whole thing is just getting more and more distressing; it’s just another aspect of the world telling me that, because I’m disabled, I don’t matter as much as the rest of the population.

So it wasn’t the best day and I struggled to get much done. I did some writing and posted on my cat Instagram – a throwback to when my lovely Lucy was a kitten – but that was about it, having lost so my of the day to panic and distress…

I had a quiet evening, watching New Tricks with Mum and working on a couple of different blog posts before going to bed.

FRIDAY

I could not sleep, no matter what I tried; I think three hours is probably a generous estimate if I totalled up the sleep I did manage to get. It was frustrating and boring but the timing could’ve been worse as it meant I was awake to listen to Speak Now (Taylor’s Version) when it came out. Given that her album releases are always at five am for me, I don’t get to join in the countdown with everyone online. So that was a bonus of sorts.

I always loved Speak Now – it was the album that had me absolutely invested in Taylor’s music – and I think this is the best rerecording of the three so far, in terms of how closely she’s managed to replicate the sound. The vault comes close to being my favourite, just after the vault on Red (Taylor’s Version): I love ‘Electric Touch (Taylor’s Version) (From The Vault),’ ‘I Can See You (Taylor’s Version) (From The Vault),’ ‘Timeless (Taylor’s Version) (From The Vault),’ and ‘Castles Crumbling (Taylor’s Version) (From The Vault)’ is fast becoming one of my favourite songs on the whole album. And the prologue is beautiful but heartbreaking; I’m tempted to call it one of the best non-musical things she’s written. Speak Now has always been about using her music to express her feelings and tell her side of so many different stories but this new prologue exposes a new side of that: that she was ashamed of not speaking up in the moment (something that she now tries hard to do) and that writing these songs was her way of coping with it, like she needed to prove to herself – and everyone else – that she could speak up. That undertone of shame is also present when you look at the songs she didn’t include at the time, in the context of the prologue: there are powerful emotions and experiences – the insecurity in ‘When Emma Falls in Love (Taylor’s Version) (From The Vault),’ exploring her sexuality in ‘I Can See You (Taylor’s Version) (From The Vault),’ and the pressures and fears that you can hear in ‘Castles Crumbling (Taylor’s Version) (From The Vault),’ for example – that it seems she didn’t feel able to share and thus an album about being honest wasn’t as honest as she’d intended. I have so many thoughts about this album already but I think I’ll save them for my albums post.

I got up around seven, bored of trying to sleep; I figured I’d have a nap later in the day if I needed one. My plans for the day had changed anyway: I’d originally been going to see Madeline Edwards at OMEARA that night, having seen her in Nashville and fallen in love with her album, Crashlanded, but she’d cancelled the show (with promises to come back soon). I was disappointed – I’d been really looking forward to seeing her perform again and seeing her perform a show after seeing her in a songwriters’ round capacity – but personally, it was probably a good thing that I didn’t have to travel up to London with the weekend I had ahead of me. I was already completely exhausted and it meant I could still go to therapy – not as much fun but still a worthy use of time.

I tried to have a restful day but I was so anxious about going to London Film and Comic Con the next day. It was my third attempt; my first was thwarted by COVID and the second by my anxiety. It’s not a happy environment for me and I was stressed about being surrounded by so many people and so much noise. I was also worried about messing up out of anxiety when meeting Amanda Tapping, my reason for going. So the whole thing had me basically paralysed by anxiety. I tried to do nice things, like watch my favourite TV shows and make bracelets (my current hyperfixation), but it was still a lot.

I went to therapy and we split the time between going over the coming days and my coping strategies before continuing with our discussions inspired by The Anthropocene Reviewed by John Green. I do like having something to prompt our conversations, especially when it’s a busy, stressful week; I feel like it allows us to keep moving forward, for her to keep learning about me, without flooring me the way sessions often do. When I’ve got something big the next day (or during the week), I can’t really afford to give everything to therapy. It’s a good way of still making the most of the time, at least for me.

Back home, I put on New Tricks (an oldie but such a goodie – apart from some of Brian’s mental health stuff) and continued resting, methodically making more bracelets. I wasn’t sure if I’d have the opportunity (or the confidence) to give the handful I’d made for Amanda to her but I wanted to be prepared. I also wrote out my letter for her (I wanted to make sure I could share the thoughts I wanted to share with her, even if I froze up in the moment) and chose the photo I wanted her to sign at the autograph booth (one from the final episode of Sanctuary – Sanctuary, my beloved).

One of my parents (one that doesn’t live with me and Mum) joined us for dinner and we caught up and continued our watching of Lucifer while we ate. I finished the bracelets I’d been making and went to bed early, very aware of how early I had to be up in the morning to get to London.

SATURDAY

I had a stressful early start but despite everything, Mum and I still made the train on time. Mum had a carer’s pass for LFCC; there was no way I could do it without her. Maybe one day but certainly not at this point, having already attempted to go and backed out because my anxiety over it was so paralysing. Even with her there, I was worried about getting overwhelmed and having a meltdown. But at least with her there, someone knows what to do; I wouldn’t have to manage something like that on my own.

On the train, I managed to get my new blog post up and then there was nothing left to do but wait and deep breathe until we got to London and then over to Olympia. Getting in as a disabled person was complicated and stressful – I absolutely would’ve had a meltdown if I’d been there by myself, without her to take over and cut through the chaos – but the people were really nice (one of them at least was autistic too) and skipped through all the complications to make it easier and get me through the registration and back out into the open hall and away from the dense crowd, which I really appreciated. We’d arrived in good time so at least I didn’t have to worry about that. We’d planned to be there just for the Amanda Tapping parts – the meeting and photograph, the autograph, and her talk later in the afternoon – so that I didn’t overwhelm myself when I was already anxious about my first trip to the convention but that meant we had a pretty big gap in the middle of the day; I hadn’t booked anything because I hadn’t been sure how the autographs worked. But according to the schedule Clark Gregg and Iain De Caestecker – both from Agents of Shield – had a talk right in that block of empty so I booked us into that.

I’d been well prepared and had the map on my phone so I navigated us up to the second level where the photo booths and autograph tables are. I spotted Amanda quickly and just stood for a while, watching people take their turn and trying to get an understanding of how the whole thing worked. But since it was just about time for her photo session, I didn’t join the queue; I’d just have to leave it again in a few minutes. So I found a quieter area to sit and wait, deep breathing to try and keep myself calm for the impending meeting. I was so anxious and so anxious about doing something stupid or embarrassing that would make me cringe for the rest of my life; I tried not to obsess over that possibility and just breathe but it was hard. My Extra Help wristband meant that I was allowed to go straight through for the photo – so I didn’t have to stand and didn’t have to spend too long completely surrounded by people – but there were still several people before me, which was a relief; that meant I could watch both how the process worked and how they interacted with Amanda (and how Amanda interacted with them, not that that had changed from when I met her back in 2018 at AT9 – she’s so open and warm) to prepare myself. When it was my turn, we hugged and I said how good it was to see her in real life and not on a screen. She was really lovely; I hate that the memory is already fading. We posed for the photo and then we said goodbye, that I’d see her at the autograph table. I don’t know how she does that kind of event; I’d be completely overwhelmed. My photo was printed right there and I collected it on the way out. I wish I was happier with it: my fringe rarely looks good in photos and I feel like I never look like myself in posed photos. But, as it turned out, it was the autograph moment that was really special.

The adrenaline was still pumping, my hands shaking, when I met up with Mum outside the photo booth and it took almost an hour for me to calm down. The adrenaline crash was making me feel sick and I was obsessing a bit over whether I should’ve done the autograph before the photo, whether I’d been too enthusiastic, and so on and so forth. The photo session had ended and, after taking a photo with Matt Smith, Amanda was back at the autograph table. I was really stressing about messing up but I knew that putting if off was just giving me more time to worry. At that moment, the queue was pretty short so I joined the end and pulled out the photo I’d printed for her to sign.

The photo sparked surprise from her helper person – I think everyone had one to take care of the admin of checking everyone off and getting names right – about her with long, dark hair, which Amanda laughed about and I expressed my love of Sanctuary and how important the show was to me, how it always will be. I gave her the letter I’d written, briefly explaining that I’m autistic and had worried that I’d get too overwhelmed to talk, which she took in stride (I was feeling pretty overwhelmed, talking to her face to face – although having no one behind me, waiting for me to move on, did help). I also gave her the bracelets I’d made and she was so gracious and so lovely about them, instantly noticing that both Mum and I were wearing others that I’d made. The conversation actually felt surprisingly easy and, like any fan I think, I couldn’t help wishing I had hours to talk to her and ask her questions. My Mum also grabbed a moment with her, thanking her for everything she’s done for me – for how much her presence in my life has helped me – from one mother to another. We all ended up quite emotional and Amanda stood up and gave us both a hug, saying that we’d made her weekend. I’m sure that we’re one of multiple moments that made her weekend but that meant a lot to me; I treasure that comment.

I was beyond hyped and very emotional after that and needed a quiet moment to myself in the bathrooms in order to bring everything back down to manageable levels, levels where I wouldn’t get tipped into a meltdown by the business and background noise of the convention. And by the time I’d managed that, it was time for the Clark Gregg and Iain De Caestecker talk.

Clark Gregg is so lovely, warm and open and affable, and although he was quieter, Iain De Caestecker seemed really nice too. They were clearly really good buddies and they told lots of funny stories; they were very enjoyable to listen to. It was really cool to hear how they got into acting and how some of their early roles shaped them and their approaches to their careers and their new projects sound interesting, although I’m not entirely sure Iain’s is my thing. They talked a little bit about Agents of SHIELD but I couldn’t help wishing that they’d talked about it a bit more, about their experiences on the show and with their castmates. I’m pretty sure everyone there was an Agents of SHIELD fan and would’ve welcomed any behind the scenes stories. On that note, I’m still sad about missing Ming Na Wen when my anxiety forced me to cancel and I would LOVE to see Chloe Bennet at a convention, although I’m not sure she does them anymore; she hasn’t done one in years, pandemic irrelevant. I can only imagine what an absolute mess I’d be if I had the opportunity to meet her, given how important the character of Daisy Johnson is to me; her acting is, of course, a big part of that.

When the talk ended, Mum and I found a table tucked away and had some lunch. We ended up chatting with a man who had a service dog, a gorgeous yellow lab or golden retriever, I wasn’t quite sure. But he was lovely and that got us talking. Now that I’ve been accepted to Autism Dogs‘ service dog programme (yes, I am SO excited about getting a service dog but I want to talk about that properly in its own post because the whole thing is a really big deal), I’m always keen to talk to people about their experiences and about their service dogs. This guy – he was also autistic but had his service dog due to being in the armed forces – patiently talked with me about his previous and current service dogs and even showed me photos of his dogs meeting various famous people; that made me laugh. While obviously not a good reason for trying to get an Autism service dog, I think that must be a super cool way of raising awareness about Autism and the needs of autistic individuals: posting pictures of your service dog with someone famous.

When the time rolled around, me and Mum headed down to the little auditorium area. I ended up making friends with someone in the queue and we spent the wait, discussing how much we love Amanda Tapping, about Stargate SG-1 and Sanctuary. She was having a hard time and, as the only person there, I did my best to keep her occupied until the talk began and then we were all absolutely occupied by Amanda. She walked out onto the stage and I noticed straight away that she was wearing three of the bracelets I’d made her – I thought I might explode with joy. (I couldn’t see, at the time, which ones she’d chosen and my photos turned out not to be clear enough. I ended up scouring social media for photos that would reveal them and, although it took several days, I did eventually get to see which ones they were, which made me very happy.)

I’ve always found Amanda to be a beautiful, thoughtful speaker. Even when answering questions from the audience, questions she couldn’t have prepared for, she speaks well, earnest and personable and funny, always engaged with both the person who asked the question and the audience as a whole. I think it’s because everything she does comes from a place of empathy. All of that said, the talk was really interesting and enjoyable. She told stories, from the set of Stargate SG-1 and Supernatural, and joked around with the host; she talked about her upcoming projects (although the future is very unknown with the writer’s strike going on) and how she’d been thinking about the future and what she wants to do next, how she’s told her agents that she wants to act again. That was very exciting to everyone. She also shared quite a lot about her life, like stories from quarantine times and how she prepares for these events and recovers after, and it was so lovely and such an honour to get a little glimpse into her world. The one thing that I felt was missing was any talk of Sanctuary, especially as her most recent starring role and a project that was such a world unto itself, driven by this small, emotionally invested circle. It would’ve made the experience perfect to hear a couple of stories from that time. I kept waiting for her to mention it or someone to ask a question about it but nobody did. I’d finally gathered the courage to put my hand up and ask a question about it (I can’t remember what it was now – probably something about how it differed to other shows she’s been a part of or about the character of Helen Magnus, another of my absolute favourite characters of all time) but it was too late; we’d run out of time and they weren’t taking anymore questions. But it was fine. The day had been amazing and the fact that I’d even considered asking a question was a really big deal. Maybe next time I go to a similar event, I’ll actually manage to ask one.

So, yes. As I said, it was an amazing day and an amazing experience, despite all of my anxiety around. It took me a while to process it all but when I finally felt like I could put at least some of it into words, I posted this…

When Amanda’s talk finished, Mum and I got going, heading back to the station and catching the train towards Manchester. Having been accepted by the Autism Dogs charity, we wanted to go to their fundraiser the next day to show our support and our gratitude. It was a bit of a trek though, especially after such a long, emotional day. I’d planned to work on the train but I was so tired that I ended up putting my head down on the table and sleeping for more than two hours. Oops.

It was pouring with rain when we arrived – absolutely tipping it down – and since our hotel didn’t do dinner, we picked up fish and chips and the hotel was really lovely and accommodating in letting us eat in our room. I was still falling asleep, literally wherever I stopped (like leaning on the bannister while the hotel staff member retrieved plates and cutlery for us); I barely made it through my dinner. We ended the day watching one of the Sanctuary episodes I had on my laptop (and were properly weirded out, watching Amanda with long, dark hair after just talking to her in person with short, blonde hair). We were both asleep early, probably by ten and definitely by eleven.

SUNDAY

Exhausted from the day before, it was a struggle to wake up early but I did eventually manage to force myself out of bed. The shower was super slippery and I nearly fell over several times, which was a bit scary, but I did survive – just – and then ran around like a headless chicken as I got myself ready and packed up. The cab was already waiting when I was done but then I got lost twice on my way out of the hotel. So… not the most graceful beginning to a day.

My Mum and I spent the morning at the Autism Dogs fundraiser, which was really enjoyable. We ate cake, met some gorgeous dogs, and watched the dogs compete in some very adorable competitions, including waggiest tale and several rounds of musical sits. It was all very cute.

The event being so far away meant that we didn’t know anyone there (apart from a few people from Autism Dogs) but we met a really nice family and ended up spending most of our time chatting to them (and their gorgeous dog). It was a really nice morning.

Then it was back to the station, a really long wait for the train, and a long series of trains home. The only thing of note was a really adorable corgi on one of them. I could definitely see myself having a corgi. But beyond that, it was long and cold and monotonous. I was completely exhausted – physically, mentally, and emotionally – so I didn’t manage to do anything on the journey; I ended up alternating between scrolling through social media and sitting back with my eyes closed.

Getting home was a great relief. It had been a really good weekend but, as exhausted as I was and needing to process everything that had happened, I really needed some time in my safe space without loads of people around. I was delighted to see the cats too; I hate being away from them. I went to bed ridiculously early and was asleep in minutes.

This post is – clearly – quite late. To be honest, I wasn’t sure if anyone cared, a fear that I often have about this blog, especially in my lower moments. But this blog really matters to me so I’m trying to ignore those whispers. This was a really cool week where some really special things happened and so I came back to it and pushed myself to get it done. I hope you enjoyed it, or at least found it interesting. It’s kind of funny; I think these are the posts where you can potentially learn the most about me but because they’re so busy, with so much happening in each one, that fact sometimes goes unnoticed. I don’t know. Maybe that’s just my runaway brain overthinking.

I hope you’re all doing well.

Category: adhd, animals, anxiety, autism, autism dog, book, chronic fatigue, chronic pain, depression, emotions, event, exercise, family, favourites, heds, hydrotherapy, medication, mental health, music, sleep, special interests, therapy, writing Tagged: ableism, ableist, accessibility, accessible seating, adhd, agents of shield, amanda tapping, antidepressants, anxiety, anxiety disorder, asd, attention deficit hyperactivity disorder, autism, autism awareness, autism dog, autism dogs, autism spectrum condition, autism spectrum disorder, autistic, chloe bennet, chronic fatigue, clark gregg, concert, concert accessibility, daisy johnson, depression, disabled access, duolingo, ehlers danlos syndrome, eras tour, exhaustion, fatigue, financial anxiety, friend, friends, friendship, healthy habits, heds, hydrotherapy, hyperfixation, hypermobile ehlers danlos syndrome, iain de caestecker, insomnia, john green, language, laptop, lfcc, lfcc 2023, london, london film and comic con, lucifer, madeline edwards, maisie peters, maren morris, medication, money, money anxiety, phenelzine, piano, revenge bedtime procrastination, sanctuary, service dog, service dogs, sleep, songwriting, speak now taylor's version, stargate sg-1, swimming, taylor swift, the anthropocene reviewed, the good witch, the nettle dress, therapy

A Week In My Life (June 2023)

Posted on July 29, 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…

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.

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.

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.

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).

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.

Category: animals, anxiety, autism, chronic fatigue, chronic pain, emotions, event, family, favourites, heds, hydrotherapy, medication, meltdowns, mental health, music, pots, quotes, sleep, special interests, therapy, treatment, writing Tagged: 2023, activist, adhd, anna berry, anxiety, art, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic artist, back pain, ball pit, blog, blog writer, blog writing, breathing room, candi carpenter, cat, cats, christmas shopping, chronic pain, dehydration, demonology part 1 ep, dog, dopamine, dopamine land, duolingo, dutch, eds, ehlers danlos syndrome, emails, exhibition, family of cats, friend, friends, heat, heds, hydrotherapy, hyperfixation, hyperfocus, hypermobile ehlers danlos syndrome, immersive exhibition, immersive experience, infinity rooms, instagram, interview, language, lanterns, medication, meltdown, mental health, my cats, neurodivergence, neurodivergent, neurodiversity, pain, pain management, pain relief, phenelzine, physiotherapy, postural orthostatic tachycardia syndrome, pots, puppies, puppy, sensory experience, singer, singersongwriter, sleep, social media, songwriter, soothing, summer, taylor swift, tens, tens machine, therapy, tim minchin, trauma, volunteering, week in my life, writer, writing, yayoi kusama

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