A Week In My Life (July 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.

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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.

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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.

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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 SanctuarySanctuary, 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.

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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.

Increasing The Phenelzine (June – July 2023)

TW: Mentions of depression and suicidal thoughts.

NOTE: I wrote this a few months ago but waited to post it. There were a couple of things that I felt I wanted to comment on in the conclusion but I needed a little bit longer before I felt confident enough to do so. So I let things play out a bit but then some life stuff happened and this post got away from me for a bit. But here we are. Here it is.

Things had improved since I’d settled on the daily 30mg of Phenelzine but it still didn’t feel like enough. I wasn’t crushingly depressed but there were still problems, still areas of my life that weren’t back to what they used to be. So, for a while, I’d been thinking about increasing the Phenelzine, upping it to the high dose of 45mg (with my psychiatrist’s permission, of course). I had tried it before and it wasn’t the right thing for me – it was like the lights were too bright all of the time – but I hadn’t been coming from as low a place as I was this time; I hadn’t been trying to pull myself out of such a bad place. So, with that in mind, I wondered whether the higher dose would help, whether it would give me the additional rungs on the ladder that it seemed I still needed.

So I saw my psychiatrist and while he was quick to comment on how much of a change he could see since I’d started on the Phenelzine again, he listened to what I had to say and we discussed trying the higher dose. He asked me what the most important thing to me was and I said that I wanted my songwriting ability back. I’d written a couple of songs since I started taking the Phenelzine again and I loved them but they’d taken so much time and effort to write, much more than it would usually take. I used to write multiple songs a week with ease but, on the 30mg of Phenelzine, it was taking me months to drag one song out of my brain. So I wanted to write like I used to again. He listened and ultimately agreed: he said we’d use my creativity as a benchmark, using how many songs I was writing as a measure of whether the increase was helping or not (alongside whether I had any negative side effects, of course).

For a while, life was overwhelmingly busy and chaotic and there were things I needed to be able to do, that I needed to rely on my body and my behaviour (as much as I could normally, at least) to manage. So it was a while before I was able to increase from 30mg per day to 45mg per day. I started the increase on 17th June 2023 and took notes for the first six weeks (since the side effects and general effects can be quite subtle), finishing this record on 29th July.

And, as always when talking about medication, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.


WEEK 1 (15mg in the morning and 30mg at night)

For most of the week, I didn’t feel any different. I have been more keen to engage with stuff, especially new stuff, but that’s not new exactly; it might’ve increased a bit but I couldn’t be sure. I was consistently tired and, on more than one occasion, I fell asleep before I could take my medication at night; I was also really drowsy during the day, needing naps to function, to make it to a decent bedtime. My back pain was relentless too, although my TENS machine did help.

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Come the end of the week, my sleep was a mess and I was completely exhausted. I ended up needing multiple naps during the day and still barely making it to a respectable bedtime, forgetting my pills again. But I was managing to do a lot: I worked through my to-do list, went out to see some cool art, managed to avoid a meltdown when a creepy guy wouldn’t leave me alone, and spent my short evening snuggling with the neighbour’s puppies. But even though I hadn’t really had the time to sit down and do any writing, my brain was like a firework show, ideas appearing one after another at a dizzying speed. It was more than a bit overwhelming. I didn’t manage to find out, exhausted as I was, whether I could turn those ideas into anything but it was a definite start.

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WEEK 2

The beginning of the week was so hot (the result of a hideous but thankfully short heatwave) that it felt almost impossible to do anything; moving around just made me even hotter, sickeningly so (heat like that makes my POTS symptoms go haywire, which just makes everything harder). For the most part, I dozed, cuddled up with one of the puppies. I was easily overstimulated and exhausted but I made it home to Brighton (with an impromptu nap on the train) and had a quiet evening before going to bed, falling asleep before I could take my pills or turn the light off.

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The rest of the week was a really mix. I slept better, longer and deeper – and I actually remembered to turn off the lights and take all of my pills before falling asleep – but I was so tired; I kept falling asleep on the sofa or in the car or really anywhere I sat down. I was just so exhausted. I struggled during the day, unable to concentrate even though it felt like my brain was full of ideas and things I wanted to do. But I just felt like I was being sucked down by sleep and staying awake took so much effort. It made me feel like I might start crying at any moment.

I had some really bad days, where I felt overwhelmed and overstimulated and miserable and just so tired that I couldn’t do anything, which, on top of it all, left me feeling so frustrated. I had a horrible time in therapy and was just feeling really fragile. Plus, I was really stressed about the puppy situation: I want her so badly and I have no idea what’s going on; the idea of losing her from my life makes my heart ache.

But despite all of the difficulties, I was surprisingly productive, and was busier than I’ve been in years. At least that’s what it felt like. I started to work on some of the song ideas that I’ve been turning over in my head; I hung out with friends; I managed to swim; I went to see the fantastic Candi Carpenter play a show in London (I’d missed their last UK shows because I was self-isolating) and then we all went to the pub afterwards and had a great time (highlights include all of us singing Taylor Swift karaoke and running into uni friends I haven’t seen in years); I even did a drawing class. It was all really good but it was just A LOT. It was hard to process it all.


WEEK 3

For the first half of the week, things were okay. My sleep was pretty good: I was sleeping long and deep, although I did have the weird, busy dreams that I’ve come to associate with a medication change. I was still incredibly tired during the day (I fell asleep upright on the sofa several times) but I did manage to get some stuff done. And even though my back was hurting, I did manage some hydrotherapy.

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Mentally, I wasn’t doing super well. I just felt really overwhelmed, drained and fragile. It felt like my depression was just hanging around, deep down, all the time. I was still functional and I even managed to do quite a bit of songwriting, more than I’d done in a while, but it was hard. I went to an amazing Maren Morris concert with my friend, Richard, and although I had an amazing time at the show, everything leading up to it and then the aftermath was a really struggle: getting there was exhausting and painful; the disability accommodations were as stressful as always; I was exhausted and freezing by the end of the gig; and it took forever to get home. I had a slow start the next morning, exhausted and aching after the concert, and despite the decent night’s sleep, I was a mess: I was completely overwhelmed and ended up in tears multiple times.

The second half of the week was really difficult. My sleep was a mess, making me a zombie during the day, and my emotions were all right at the surface, raw and ragged. I was beyond stressed and overwhelmed by everything that was coming up over the coming weeks; it felt like it was all barrelling towards me at an unstoppable speed. Both my body and my emotions felt so heavy and I was constantly bursting into tears.


WEEK 4

This week was pretty much dominated by my overwhelming, paralysing anxiety and stress over trying to get Taylor Swift tickets and the hurt and devastation of being treated so badly as a disabled person. I wrote about that here so I won’t rehash it all but I wanted to include what a devastating effect the experience had on my emotional and mental states. While the experience is, of course, separate from whatever the Phenelzine was doing, both are tied up with my emotional regulation and the effect my feelings have on me. As I said in my post, I was basically in various states of meltdown for all three days of the tickets presale. And it wasn’t just the suffocating anxiety of not getting a ticket: the way that Wembley Stadium treated disabled fans was appalling and it was just such a gut-punch to realise that they either didn’t care about us or they didn’t even remember that we exist. It was really distressing. I was so stressed and so depressed, even after I managed to get tickets. Just the thought of not getting to see this show, having looked forward to it for five years, had my emotions so big and loud and devastating that I felt this overwhelming compulsion to scream until my throat tore, to rip my skin off. With so little bringing me joy these days (and my chronic suicidality ever present and oppressive as a dark cloud), the thought occurred to me that, rather than endure the excruciating pain I know I would feel if the shows happened and I couldn’t be there, I should just kill myself to avoid it all. That thought just made me feel even more fucked up than I usually do. My emotions are so big and so precarious that even the smallest thing can tip me into serious and scary lows and this isn’t the smallest thing, given how much Taylor means to me. As I said in my post about the experience, these feelings are due to my mental health, to my depression and my chronic suicidal thoughts, not specifically to seeing Taylor; it’s about the fear of losing one of the few sources of joy when you’re in a really dark place. Those things will be different for everyone but the fear of losing them is so overwhelming that words don’t really do it justice.

The exhaustion and residual stress from that whole… experience had completely drained me of energy and, for several days, I was so tired that I could barely function (although I’d get sudden jolts of adrenaline, thinking I should still be on the phone, that I’d fucked up and forgotten, and was losing my chance). My sleep had been screwed up by my anxiety and I had pain from the physical tension I’d been holding in my body for three long days; both of those took most of the week to settle back to normal, normal being exhausted and sleepy and not able to do much. That was causing me a lot of anxiety too: I had so many things that needed doing but I was just too tired to do them and the anxiety over how they were piling up was starting to get overwhelming. I did manage to spend some time with friends, which was really nice, but I struggled to feel connected while still feeling so emotionally drained.


WEEK 5

The last week had exhausted me and it showed over the following weeks in various different ways. I was going to bed early, sleeping long and deep, and often struggling to wake up. And even with a long night under my belt, I was tired and drowsy during the day, often falling asleep on the sofa (and sometimes at my laptop); I struggled to concentrate, my eyes were tired and straining by the end of a day, and sentences stopped making sense. I was just completely done in. I hadn’t emotionally recovered either. I felt utterly overwhelmed, fragile and miserable; I was suicidal in the face of what just felt like too much. It wasn’t particularly surprising when I had an awful meltdown.

I did manage to be vaguely productive though, despite it all. I worked hard at my hydro and physio; I went to therapy; I managed some writing; I saw a couple of friends and had a good time with them, even if I didn’t feel as present as I usually would; I went to a show a friend runs (and the whole thing made me very emotional); I attended an interesting webinar about ADHD. But, even with how much I was struggling to be  present in my mind, nothing felt quite enough, like I hadn’t done enough or gotten as far as I’d wanted to. I’ve been trying not to beat myself up but I’ve never been very good at that, being kind to myself that is.


WEEK 6

Another week and my sleep still wasn’t great. I was still falling asleep early (sometimes forgetting to turn the light off or put in my retainer) and sleeping long hours, although I was starting to wake up at a more reasonable time. I was still really tired during the day, taking some accidental naps, and struggling to focus. It was getting better but, as I said, it wasn’t great.

I was working hard to build in better habits too, alongside the medication and therapy. I worked hard at hydrotherapy and started physiotherapy too. The physio was a bit of a shock to my system and I was sore for the first few days (which disrupted my sleep but then pain always does). But, midweek, I ran for a train and actually caught it, despite thinking that there was no way I was fast enough or strong enough to make it (I would’ve had to wait an hour on a cold platform for the next one so I was certainly motivated). There’s no way that, a year ago, I could’ve managed that; I was so ridiculously proud of myself. So the hydrotherapy has definitely made a difference and I feel confident that the physiotherapy will only complement that.

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I was also trying to drink more water. I definitely don’t drink enough and, given that the Autonomic Dysfunction I struggle with as part of my Ehlers Danlos leaves me prone to chronic dehydration, I should be drinking a lot more than the average person. I’m nowhere near that yet but I’m already drinking more than I was when I first measured my liquid intake.

It’s hard to know for sure but I felt like I was more productive and motivated than I had been previously. I was actually getting things done and getting them done at a faster pace: blog writing, songwriting, researching. I even went to an online writing workshop that I really, really enjoyed: the session was fun, the people were really nice, and I was really excited about what I wrote. My brain was just desperate for new things and new information; it was excited to learn. I don’t really know how to explain it any other way. I also went out and spent time with friends, went to a songwriters’ circle, and saw family friends. I was more social than I’d been in ages but I was kind of feeding on that, which is really unusual for me. But it was nice. And exciting. Oh, and I also started mentoring sessions for my creative projects, which I felt really optimistic about.

Unfortunately, the week didn’t end as well as it had begun, my depression hitting me like a tidal wave at full strength. It was so overwhelming that I felt like I couldn’t breathe, couldn’t do anything. I was also really stressing about food and eating, feeling guilty as soon as I ate anything. I was miserable and exhausted and couldn’t focus on anything; I slept on and off during the day, dizzy and ears ringing. One side of my body was tingling too and we were this close to calling the doctor. It was horrible. I also found that I physically couldn’t relax: my body felt tensed up even though I wasn’t tensing my muscles (so I obviously couldn’t relax them if I wasn’t actually causing the problem). After several hours, my muscles started to hurt but I still couldn’t unclench them. My legs were twitching too and when I thought about it, I realised that that wasn’t new, that it had been happening on and off for weeks, as had the tensing in certain muscles. The more I thought about that, the more stressed out I got. I know that certain doses and/or extended use of certain medications, including Phenelzine can cause Tardive Dyskinesia, a movement disorder with symptoms including sudden and irregular movements in your face and body. It’s something that gets worse over time and the idea of developing it was really distressing to me.


In the following weeks, my sleep evened out, helped by CBD gummies and the occasional Diazepam or Zolpidem. I spoke to my psychiatrist about the twitching and whether it could be Tardive Dyskinesia. He felt that it was unlikely, that a much more likely cause was the physiotherapy, which I’d started around the same time the twitching started; he thought it was more likely that it was just my muscles waking up with the exertion I was putting them through for the first time in so long. So my anxiety was abated.

But now, several months later, the twitching is still happening and my anxiety is growing again. I’m going to go and see my psychiatrist and have a proper conversation about it because if it is something – something that needs to be dealt with rather than something that’ll just resolve in time – I need to know so that, at the very least, I can think about the options, whatever they are. It’s hard to believe they’ll be anything but bad though; past experience doesn’t exactly fill me with confidence.

Introducing Izzy!

This is Izzy, the newest addition to our family!

After months of searching and being heartbroken several times, we finally found our puppy. Our puppy!

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She’s a gorgeous, three month old Pomchi (half Pomeranian and half Chihuahua) that we brought home a little over a week ago. She’s wonderfully soft, with the most fantastic ears I’ve ever seen, and she’s super snuggly: she’s already practically glued to me at all times and she hasn’t even known me two weeks. I absolutely adore her already and she seems to adore me. We’re probably going to have to work on her separation anxiety at some point but obviously we’re still bonding and still building our relationship. After all, she’s still such a baby and she went from being with her canine family and their owners to being with us so she’s never been alone. But that’s something she’ll learn and she has plenty of time to learn it. She’s still getting settled so we haven’t really left her alone much but as she gets used to her new environment and routine, we’ll leave her alone more and she’ll get used to it. And she’ll be fine. She’s ridiculously smart: she’s already coming when we call her name (which she’s only had for about four days), she’s very proficient with the puppy pad, and she’s taken to her crate really well. She’s still learning to sleep in her own bed and usually ends up in mine but she’s still so little and we’ve got plenty of time. She’ll get there. She’s so clever; she’s so clever that she’s going to be trouble – I’m not going to be able to hide anything from her. I think, because she’s so smart, it’s easy to forget how young she still is and how much time we have to work these things out.

She’s a gorgeous little thing. Everyone falls in love with her, even random strangers in the street. She can be a bit shy when first meeting someone but it’s never long before she’s bouncing around, ready to play. She just wants to be friends with everyone (most of all, I think, she wants to be friends with the cats who are still wholly unconvinced by her presence). It’s very cute. The only thing cuter is when she has to stop for a nap and she curls up against me, either pressed into my side or stretched out on my chest. It’s the most adorable thing. She’s a soft, warm little snuggler and I’m so grateful that we found her.

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