ME/CFS Research: Photo Diary (Pre Lockdown and During Lockdown)

Not long ago, I volunteered for a research study into ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and part of it involved keeping a photo diary as a visual representation for how my life is affected by my CFS. Obviously my life before the pandemic and my life now are quite different and so the researcher asked me to include pre-pandemic photos as well, to ensure that both experiences were recorded for the study. The collection of photos (and descriptions) I sent her was very long but I thought I’d do an abridged version to post here because it was a really interesting exercise.

(It’s worth noting that this was put together before I started back at university, hence why there aren’t any current references to classes or assignments.)


PRE-LOCKDOWN

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1. During my BA, I frequently took naps in quiet corners of my university between classes and then at my best friend’s flat when he moved onto the same street as the university. I found the commuting exhausting and the classes were long (some of them three hours) and took a lot of concentration. By the end of the semester, I was often really struggling to wake up to go back for the next class. A few times, I slept straight through both my alarm and my class. Fortunately that only happened a couple of times!

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2. I’m currently doing a Masters Degree in songwriting part time and pre-lockdown, I’d go up to London usually once or twice a week for lectures, workshops, and cowriting sessions. This is an example of one of the assignments we had during the first module, which was called Creative Process.

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3. Because living alone would be too much for me – I wouldn’t have the energy to look after myself, let alone do anything more – I commute to university (pre-pandemic anyway), involving lots of underground travel and multiple train journeys a week, something that I find exhausting. This is one of the reasons I chose to do my Masters part time because it reduced the amount of travelling and therefore allowed me to spend more energy on the course/work rather than on travelling.

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4. At the end of any day that involves hard work or anxiety, I’m utterly exhausted and usually end up horizontal on the sofa or going to bed as soon as I get home from wherever I am. In this instance, I’d just done the assessment presentation for the first module of my Masters – which I’d been incredibly anxious about – and was completely exhausted. Plus the day had involved practicing it in the morning as well as travelling to London and back. I was so tired that I could barely stay awake long enough to eat dinner before going to bed.

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5. I spent most of my days out of uni on the sofa, working on music, my mental health blog, or catching up with my diary, a favourite movie or TV show on in the background because I work better with background noise. I’m usually joined by a cat or two.

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6. As a singersongwriter, I try to perform as often as I can, both in terms of opportunity and having the energy (I once played three gigs in three days after which I could barely function for over a week because I’d just used up so much physical, mental, and emotional energy). That’s not a common problem – managing my energy around the amount of gigs – as there aren’t a huge number of opportunities with so many aspiring singers in the two cities I perform in, London and Brighton. I love performing. It’s the place I most feel myself, especially if I’m singing songs that I’ve written. I don’t feel any fatigue while I’m performing – I’m feeling so much joy that it’s like I’m flying – and I don’t feel any fatigue until the adrenaline wears off, anywhere between thirty minutes and several hours later.

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7. Since getting an Autism Spectrum Disorder diagnosis, I’ve been able to get access to disabled seats at concerts, which does (in certain ways) improve my concert experience. It can be more stressful and it can make no difference at all but at the very least, it makes me feel better. I am in the disabled section and therefore no one can judge me or think that I don’t deserve to be at the show because I’m not dancing around, not ‘enjoying myself enough.’ That makes me feel more able to sit as I need to, which does make the concert experience easier on me and my body. Having said that, I’m not always so sensible out of sheer enthusiasm.

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8. Before the pandemic, my best friend, Richard, and I had almost weekly writing and production sessions. My current EP was made almost entirely by the two of us in various rooms in the various places we’ve lived in over the last few years. These sessions are so fun and invigorating and even when it’s a struggle to find the right words or get the production to sound exactly how I want it to sound, it always feels right. I often feel very drained afterwards because it involves a lot of concentration and communication and we often work for four hours or more at a time. We have had sessions that last all day where I’m barely coherent by the end.

SINCE LOCKDOWN

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1. We have five cats in the house and I’ve been spending a lot of time with them. They’ve always been really good for my anxiety – probably because they are so mindful and live so fully in the moment – but they’ve been an extra comfort during these stressful times. I always try to get a good cuddle in the evenings since I get particularly anxious before bed because I’ve been sleeping so badly and having lots of nightmares during lockdown.

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2. I generally drink at least two Red Bulls a day to keep myself awake and somewhat alert, although I don’t think they work as well as they used to. I’m sleepy all the time, but whether that’s from the CFS or the side effects of my anti-depressants or both, I don’t know. I hate feeling like I need to drink it and I worry about the effects on my health but it’s currently the only way I can stay awake for at least most of the day. My Mum and I are investigating other options, or we were until the pandemic brought everything to halt. We haven’t given up though.

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3. This is my usual day-to-day view at the moment. I have a desk designed for bed or sofa use so that I can work from the sofa, which is more comfortable for me than working at my desk since I’ve been have problems with pain during lockdown (I’ve been referred to various hospital departments but I’m still waiting for the appointments). I’m usually working on my laptop – on my mental health blog, on my diary, on music stuff, etc – and there’s usually a cat draped over me.

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4. I usually have the TV on in the background because I seem to be more productive with familiar background noise, like a familiar TV show or movie. But I’ve also been watching new things during lockdown, both to escape from all of the stress around the pandemic but also as inspiration for my music as not much is happening in my personal life to draw from for songs. This is the very last episode of Agents of Shield, my favourite TV show and I was hugely sad to see it end although the ending was as perfect as the end of something you love can be.

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5. Since face-to-face writing sessions aren’t safe at this current time, I’ve been doing all of my writing sessions via Zoom. I’m currently doing about two a week, mostly with my writing partner, Richard. We alternate sessions: one on my songs and then one on his songs and so on. It’s harder work and not quite as fun or productive as a normal pre-pandemic session (who would’ve thought that not being able to point at something would trip up the creative process?) but it allows us to keep creating, which I’m grateful for. I’m always careful not to plan anything too difficult afterwards because these sessions are really draining and after about four hours, my ability to concentrate starts to fade.

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6. I’ve been playing a lot of piano during lockdown. It distracts me from all that’s going on, I want to improve my skills, and I just genuinely love playing, especially in the lower octaves. I find them very soothing. I can play for hours without noticing the passing time; it’s lovely. Playing and singing for hours is, of course, tiring but it’s worth it because I get so much enjoyment out of it.

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7. Because of my fatigue, I spend a lot of time on the sofa, which can get boring and frustrating, but it’s not so bad when I have my Mum (she’s self-employed, primarily working from home – especially now) and the cats around.

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8. Most days consist of sitting on the sofa, working on my laptop. I’m writing a lot of posts for my mental health blog at the moment, preparing for when university starts again and I have less time to write. My Mum often does emails similarly, keeping me company even if we aren’t actively engaging with each other.


So that’s my condensed photo diary for the study. There are, of course, other areas of my life and other areas of my life that my CFS affects, like food and exercise but I don’t have any photos relating to those. For example, swimming is my main form of exercise but pre-pandemic I wouldn’t take my phone further than the locker room and since lockdown began, I’ve been struggling to find a way to swim that feels safe. I may have found one but I’m trying not to get too excited: I’ve missed it so much and I’m so desperate to get back to it, for my physical health, my mental health, and my relationship with my body. I was also reluctant to include other people; my exception was Richard because our work and social media presence are so intertwined. So there are obviously gaps but I tried my best to give an overview. Hopefully it will be a useful contribution to the research.

A(nother) Week In My Life (In Lockdown)

It hasn’t been that long since my last week-in-my-life post but life is so different week to week at the moment that I thought I’d do another one once I started to see how the week was turning out. I thought, if anything, it would be interesting to be able to look back and see how different different periods of time could be during this pandemic and the subsequent lockdown.

The week in this post started on Monday 20th July and ended on Sunday 26th July.


MONDAY

I got up around eight, determined to be productive: do admin, send emails, work on blog posts, and so on. But I quickly discovered that the internet was down for the whole street and so I had to adjust my plans. I went back to my photo library and managed to finish sorting out my photo library: I can’t remember if I’ve mentioned this but when I loaded my photo library onto my new laptop, there were multiple duplicates of every single photo and the only way to be sure that I was getting rid of all of them (and not losing any of the originals) was to go through it manually. It took about two weeks of dedicated work but that morning, I finally finished deleting the duplicates, cutting the library down from 85,000 to 30,000 – no wonder Photos was running so slowly… I wasn’t quite done: I had to finish organising the remaining original photos into albums but it was real progress and that was very satisfying.

Since I was filming the music video for my next single, ‘Back To Life,’ the next day, I’d recoloured my hair a couple of days earlier (it had grown out A LOT) but since my usual dye had been discontinued, I’d had to guess at a new one and I wasn’t super happy with it so with my Mum’s help, we dyed it again, using a much redder dye than the previous one. It still wasn’t quite what I wanted but it was better than before.

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I spent the afternoon working on (and finishing!) my next blog post, My Lockdown Favourites, and then, in the evening, I tried on the outfits and jewellery for the video, just to make sure that everything matched and was comfortable enough to move freely in. I avoid weighing myself because of my struggles with food – I don’t believe I have an eating disorder but I have gone through phases of disordered eating so I’m careful to avoid things that trigger that, like keeping a frequent eye on my weight – but I don’t think I’ve gained much, if any, weight during lockdown. My weight fluctuates within a certain range and I’m currently wearing the bigger size of jeans but that did happen pre-lockdown times. So I was relieved that everything was comfortable and that I don’t need to spend money on new clothes.

I was happy with the two different looks and as comfortable with our safety plan as I could be, given that I find just going out incredibly stressful, but I still felt very anxious about making the video. We were shooting early to avoid as many people as possible, would be masked (apart from me when I was on camera), and would be socially distanced, but I was still anxious about being out, about acting relaxed and happy for the upbeat song while feeling so anxious, as well as all the normal anxieties about making music videos and being filmed. So it’s safe to say I was struggling. But if we didn’t shoot the video, we couldn’t move forward with the EP, and I would continue to carry all of that anxiety.

In an attempt to relax a bit before bed, I caught up with one of my parents over FaceTime and watched an episode of The Mentalist with Mum. Then we went to bed early, given that we had to get up pretty early for the video shoot. I don’t know how I’ve managed to come up with three music videos (four shoots in total), all that have involved getting up at vaguely ridiculous hours.


TUESDAY

My alarm was due to go off at six but I woke up at five thirty. That was positively luxurious compared to Richard’s ‘call time,’ since he’d had to leave his house before five (he was catching the first train from London – we’d talked about this a lot before we even started planning but he said he felt safe doing it, otherwise we wouldn’t have gone forward with the filming). But that extra time was good: it gave me some time to settle myself and collect my thoughts.

When my alarm went off, I got up and got showered, made up, and dressed in the first outfit I’d be wearing. I had a bit of breakfast and it was all going really well when, of course, I discovered a problem: a white residue had appeared on the frames of my glasses. It’s happened before but Mum had managed to get rid of it using a general household cleaner but nothing seemed to be working this time. We were supposed to be picking Richard up from the train station but I couldn’t do the video with my glasses looking the way they did (it was really noticeable and would look horrible) and I was rapidly spiralling into a meltdown, which I really couldn’t afford to have if we were going to film the video. In the end, Mum had to go and get Richard while I desperately tried to clean them, using anything and everything I could think of. A combination of googling and just experimenting later, I discovered that a thorough scrubbing with toothpaste was the answer. So, just in case you ever find yourself with the same problem…

PRO TIP: If your glasses develop a white residue on the frames, a good scrubbing with toothpaste will make them look as good as new.

I was just finishing when Mum and Richard got back and we headed straight out to the beach. I’d expected it to be pretty quiet, given that it was eight in the morning and a section of the beach a good distance from Brighton, but it was actually quite busy: there was an almost constant flow of people, most of whom weren’t wearing masks. This only added to my stress, in terms of safety and in terms of filming.

I don’t want to give too much away since this post will go up before the video is released. But we shot footage in three different locations (which included a somewhat awkward outfit change) and got everything we needed. I’d been worried about singing and making eye contact with the camera, something I’ve never done before, but that turned out to be much easier than before. It was hard work though, especially considering I’ve been inside for the last several months and my high level of anxiety. But we got it done and I’m cautiously optimistic about it as a finished video.

Here’s what I posted on Instagram afterwards…

Braved my anxieties to work on something special with the lovely @sandersonphoto today 🌊 (x)

After so much physical exertion (for the last year or so, even standing for extended periods of time can make me feel lightheaded and dizzy), it was a struggle to get back to the car. My whole body hurt, particularly my hip and knee joints and my steps got shorter and shorter. It felt like there was broken glass between the bones at each joint. It was horrible.

Eventually we made it back to the car and then home. We sat socially distanced in the garden for some lunch and then, as I watched Richard attempt to reconnect with the cats, I ended up falling asleep in my chair, completely exhausted by the emotion, the anxiety, and the physical activity. Fortunately Richard understands that this does happen – it’s happened before. I didn’t sleep for long and then we had a good catch up before dropping him back at the station around four. We were both really wiped from the early starts and the shoot.

Home again, I flopped down on the sofa and caught up with my other three parents who were all eager to hear how it had gone. Then me and Mum watched a couple of episodes of The Mentalist, had dinner, and went to bed early.


WEDNESDAY

It was a really tough day because I was in a lot of pain after the shoot the day before. My whole body hurt, every single time I moved, every time I even shifted my weight. It was hideous. No one has managed to explain why I experience this level of pain after ‘normal’ levels of activity and our investigation has been stalled by the pandemic. Hopefully one day we’ll be able to find out, or at least find some solid ways of managing it so that I don’t feel so limited (I think the lack of exercise – swimming is the only form of exercise that I can do without pain – hasn’t helped).

I’d planned to have a very gentle day anyway, knowing I’d be tired, so I settled in to watch Absentia Season 3. I knew from watching the first two seasons that I would get so absorbed that I wouldn’t want to stop until I finished it so I dedicated the day to binging the whole thing. I’m finding this to be a really good form of escapism at the moment, especially because I don’t have the concentration to do anything but watch it. Anyway, it was really good and I really, really enjoyed it. Having only started it a month or so ago, it’s already one of my favourite shows. I think the first season is my favourite but I’ve loved all of them and I love Emily Byrne (played by Stana Katic). She’s such an interesting character with such a complex history that I could just watch endless episodes of her. It’s definitely a show that I’ll watch over and over again.

This is the trailer for Season 1 even though I was watching Season 3 – I just don’t want to spoil the show for anyone.

I was so overwhelmed when I finished it that all I could really do was sit and absorb it. But eventually my brain started working again and I had a quick scroll through social media (I haven’t been spending much time on it recently but I do try to check in every now and then so that I’m update to date with what and how my friends are doing) before doing a bit of work, despite my dedication to a day of relaxation. A Dutch journalism student had reached out to me, asking if he could interview me as a new artist dealing with the pandemic. I’d been happy to help and he’d sent me a series of questions that I’d been thinking about so I pulled them up and wrote out my answers before sending the document back to him.

I FaceTimed with one of my parents (it’s hilarious – we talk more now than we did pre-pandemic even though we’re currently doing less and therefore have less to talk about, leading to some pretty bizarre conversations) and then me and Mum had dinner with The Mentalist. And after taking some time to digest, she gave me a massage (I think I’ve mentioned previously that she used to be a massage therapist) to help with all the pain I was in. It wasn’t exactly comfortable but I think it helped in the long run.

Lying on the carpet post massage, I was so relaxed that it was very hard to get up. I didn’t end up going to bed until around eleven.


THURSDAY

Despite the less than early night, I woke up at six and couldn’t go back to sleep. I was still tired but I enjoyed the cool and quiet of the early morning. It’s the time of day when I feel most calm, I think.

I stayed curled up in bed but I got to work, answering all of my outstanding messages (and there were A LOT of them). Over the last month or so, I’ve found that taking a couple of days away from social media can be really good for my mental health but then almost all of my socialisation with my friends is through social media so I’ve been working at finding a comfortable and healthy balance. The messages do pile up every now and then though so I’m not there yet. But I’m trying.

That done (and it felt like a real achievement considering how many messages there were), I got up and went downstairs to feed the cats. I was still in pain but it was mainly just in my joints and where the body bends, rather than absolutely everywhere like it had been the day before. So that was progress.

I spent the morning updating my bullet journal and working on various blog posts with Friends on the TV with volume turned down low (background noise helps me work and it seems to be the only thing that doesn’t distract me). I was just getting on with that when I got a handful of notifications from Taylor Swift’s social media accounts, announcing that she was releasing a new album at midnight (or 5am for me in the UK).

My brain basically short-circuited. It was such a shock – a good one, yes – but a shock nonetheless. I was incredibly excited but I also had this weird mix of adrenaline and anxiety rushing through my system; I think the only way I can describe it is that it’s like when my plans suddenly get derailed and I’m left scrambling to try and figure out what the new plan is. It’s not a comfortable feeling. Having said that, I don’t want to come across as negative because I was genuinely immensely excited but sudden changes are a lot to handle when you’re autistic so I was dealing with a lot of overwhelming emotions.

Given this news, my concentration was shot for the rest of the day. Usually, we have a lot longer to wait between announcement and release so the anticipation builds over months but this time, it felt like it was all compressed into less than a day. It took hours to get back into a headspace that wasn’t just ‘OH MY GOD! OH MY GOD! TAYLOR SWIFT IS RELEASING A NEW ALBUM AND WE’LL HAVE IT IN LESS THAN TWENTY FOUR HOURS!’ and even then, the thought would leap up out of nowhere and smack me in the face, derailing my thought process. So it wasn’t the most productive day ever.

I spent (or tried to at least) the rest of the day trying to catch up with my diary so that I could immediately write down my thoughts on the new album the next day. I didn’t quite make it but I got close enough that I would still be writing about it on its release day.

Something that I started doing with the ‘Red’ album was predicting which songs I would like based on the titles. Obviously that’s not much to go on and there’s no logic to it really but it’s a fun exercise. My guesses for ‘folklore’ were ‘the last great american dynasty,’ ‘exile’ (I mean, a collaboration with Bon Iver?!), ‘my tears ricochet,’ ‘seven,’ ‘august,’ ‘this is me trying,’ and ‘epiphany.’ So I wrote those down, set multiple alarms to wake me up for my traditional 5am first listen, and went to bed early.


FRIDAY

My alarm went off at 4.45am and I flipped through various apps on my phone, just trying to wake myself up for the 5am release. But when the time came around, the album wasn’t available on iTunes. Fortunately lyric videos for each song had been uploaded to YouTube so I watched those according to the track listing. It’s always really important to me to listen to a new album in order because that’s a creative decision the artist made when they put it together. I often continue to listen to albums like that (unless I’m in a specific mood and need the validation that songs of a similar emotion provide).

As I listened, I noted down my thoughts about each track. I love how our relationships to songs change over time and as we discover all the layers within them so I always find it really interesting to look back and see what my original thoughts were for comparison. I don’t know if anyone cares but I’m going to stick them in here because I love the album and loved it from the first listen.

  1. the 1 – I instantly loved the nostalgic feel, created by the warm and gentle production. It had gorgeous lyrics with beautiful imagery and the melody felt easy and natural; I was singing along by the end of my first listen. It was instantly a favourite.
  2. cardigan – This one felt darker and a little more jaded with slightly more chaotic production. But it still had a warmth to it; it reminded me of a fire on a winter evening. The lyrics were detailed with more beautiful imagery.
  3. the last great american dynasty – This one has such an expansive, detailed story and I just loved the idea of this truly shameless woman but I didn’t personally connect to the song until it flipped and the story turned personal and then I was grinning like an idiot. The production felt very fitting with the story being told and again, the detail (and wide vocabulary) made for a great song.
  4. exile feat. Bon Iver – This is the collaboration I never knew to hope for. Bon Iver has a gorgeous voice and I just loved the two opposite sides, telling their story both in concert and over each other in a way that only intensified an already incredibly emotive song. It was an instant favourite and had me sobbing on the first listen. The lyrics were absolutely stunning and while I loved pretty much all of them, I really loved the first and final lines of the main chorus. There was just something about it that hit me square in the chest.
  5. my tears ricochet – The vocals in this one were particularly gorgeous and the lyrics were gorgeous and rich, kind of reminding me of velvet and stately rooms. The story is a mystery but beautifully detailed and I’m looking forward to listening over and over again until I understand it better. (I have to add that as soon as someone pointed out that it was, or at the very least could be, about the betrayal of Borchetta and sale of her masters, I fell in love it, with the metaphor and the emotion.)
  6. mirrorball – I instantly loved the guitar sound and I just loved the lyrics, how fragile they were but still so full of hope for love. It had some really beautiful lyrics and somehow, the whole song – lyrics, melody, and production – sounded just like a mirrorball.
  7. seven – I found this one a bit hard to follow but it had real character and some beautiful lyrics. I also really loved the relationship between the characters in the song.
  8. august – This one just sounded like a hazy summer day to me and the story was just so clear. The production was full and glorious and again, I loved the relationship between the two characters and the obvious complexity of their relationship, even though we don’t know who they really are or if they’re real at all.
  9. this is me trying – I was instantly struck by the production: thick and stunning and emotional. And I loved the reverb on the vocal and how it added to the emotion of the song. It was a favourite straight away, with gorgeous lyrics and imagery, and it was so honest and vulnerable in its simplicity. I just wanted to close my eyes and live in it. I found the rhythm of the bridge a little bit jarring but I’m sure I’ll get used to that with more listening. It seemed more real than some of the others. I’m not sure why but some of them just seemed more real.
  10. illicit affairs – It took me a while to get into this one – I found the verses lyrically beautifully but the rhythms tripped me up a little – but I loved the stripped back-ness of it. I loved the chorus lyrics and I adored the bridge: the pain and the fury in it were just so real, so brutally honest and vulnerable.
  11. invisible string – I thought this one told a really lovely story with both tongue-in-cheek lyrics and beautifully sincere ones. But I didn’t like something about the production of the vocal, something that made it a little uncomfortable to listen to.
  12. mad woman – Definitely the biggest oh-my-god of the album. I kind of wanted it to be a huge, relentless wall of sound but I think the calm, beautifully honed steel approach is probably more effective, given the subject matter (another take on Borchetta, Braun, and the sale of her masters). I loved it and loved her refusal to be shamed for being angry. The lyrics were truly awesome and I loved how she went straight for the jugular, all in in an incredibly gratifying demolition.
  13. epiphany – I found this one hard to listen to because the emotions were so raw but it was beautifully written, a stunning tribute to the people described and their stories. I cried from the first verse until long after the song finished.
  14. betty – I thought this big, busy story was told really well but I didn’t really connect with the characters. I just ended up getting distracted wondering who the characters were, who the songs were about. The production also wasn’t really a style I love but the key change did make me smile. And hearing her sing, ‘would you tell me to go fuck myself’ made me laugh, even though she’s singing in character.
  15. peace – This is, I think, one of the most beautiful, vulnerable, honest love songs I’ve ever heard. It reminds me of wedding vows, of all of the promises she’s willing to make but then asking him if they’re enough to outweigh the hard times. She lays everything bare and I think that’s part of what makes the song so special. The production is also simply gorgeous (even though I would’ve loved a big, glittering bridge but I get that that’s not how this genre or style seems to work). It was another real favourite and I was a puddle of tears by the end.
  16. hoax – This one feels intricately connected to ‘peace’ somehow: a darker but still painfully honest, vulnerable love song. Having said that, I could be completely wrong. I don’t feel like I fully understand it with just one listen because there are just so many lyrics and metaphors and emotions to unpack but I’m looking forward to listening to it over and over again and sharing theories with other fans until I understand it better. But back to the song, the beautiful lyrics are only accentuated by the simple production. It ends the album on a very complex note, which isn’t something she traditionally does.

I’m really looking forward to hearing ‘the lakes’ and seeing how that fits into the album and I’m just really excited to listen to the album over and over and over again, until I know every little detail. Again, because I love it so much (and because I’m a Songwriting Nerd), I’ll probably make a whole post about it at some point once I’ve listened to it more and have a better understanding of the stories. If that’s not your thing then I absolutely won’t be offended if you skip that post.

I bought some merch (the international shipping is atrocious but I’m trying not to beat myself up since I’ve barely spent any money since lockdown began) and spent the morning on Tumblr, reading people’s reactions and theories and analyses of the new songs. This is always one of my favourite parts of a new Taylor album, everyone coming together to peel back all of the layers in each of the songs. It reminds me of this Daisy Johnson quote from Agents of Shield (my favourite TV show): “Usually one person doesn’t have the solution, but a hundred people with one percent of the solution? That will get it done. I think that’s beautiful… pieces solving a puzzle.”

Early afternoon, I had a Zoom session with my therapist. We talked through the week since my last session, discussing the difficulties and how I’d dealt with them. She also let me ramble about Taylor Swift for a little bit because she knows how much I love her and how important her music is to me, both as a person and as a songwriter. For the most part though, we talked about how much I have and still am struggling with the different reactions people have had and are having to the pandemic and lockdown. I’ve never been able to get my head around the way some people have managed to be super motivated and productive during this time while I feel like I can’t move past the fact that we’re in a pandemic, that tens of thousands of people have died, hundreds of thousands of people are mourning, and so on. It’s like this giant roadblock that I just cannot navigate around. Yes, I’ve been able to do bits and pieces here and there but this is always in the middle of my brain, making it impossible to be much more than minimally functional. I don’t think a person is bad or wrong for being able to compartmentalise or manage however they are managing; I just don’t understand how someone actually does it. Usually I can understand how someone might approach a situation differently even if I can’t actually do it myself but right now, I can’t. I wish I did; I wish I knew how to not feel constantly overwhelmed by distress and grief and fear.

By the time we finished, I was really starting to flag; the early start, the emotions of ‘folklore,’ and the difficult discussions in therapy. I was TIRED; I was struggling not to fall asleep on the sofa. I lay there for a while, just processing everything, and when Mum came upstairs to check on me, we ended up watching The Mentalist together while I did some diary writing. My emotions were all over the place and I just needed some gentle time.

Dinner and another episode later, me and Mum got in the car and went for a drive. I always introduce her to new albums on long drives and it’s a tradition we both really love (something we haven’t done since before we went into lockdown). We didn’t have anywhere to drive to so we just decided to drive up to a particular junction on the motorway and back, listening to the album beginning to end. For some reason, it feels like an album that sounds best in the dark, hence why we’d waited until the evening. It was really fun and we both really enjoyed it. Mum’s initial favourites were ‘illicit affairs,’ ‘this is me trying,’ and ‘mad woman.’ After a day of listening to it, my top three were ‘this is me trying,’ ‘mirrorball,’ and ‘exile.’ But I really, really love a lot of them. It’s mostly a case of which ones do I love more or less and which ones do I connect to more or less.

There was a diversion due to roadworks so we ended up getting home pretty late. We were sorting out the cats and getting ready for bed when we came to a decision on something we’ve been discussing for a while: we decided to buy the one thing I wanted for my birthday, a Gretsch hollow body electric guitar. I’ve wanted one for months and it was going to be my birthday present but me and Mum had discussed it and decided to buy it a couple of months early so that I can make the most of it before university starts again in early October (my birthday is at the very end of September). I want to improve my skills and also just play for fun as much as possible before I have to start factoring in university work, in whatever form that takes. We’ve been talking about it for a while now but that evening, we decided to finally stop talking about it and actually do it. It was very exciting and would be arriving in just a few days (the picture below is from when it arrived).

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SATURDAY

I woke up feeling tired and unsettled and anxious and it just got stronger and stronger throughout the day. I just felt really overwhelmed by all the things I feel I still need to do before uni starts again, which ironically and frustratingly made it harder to get anything done.

It was a rainy day so the cats spent a lot of time indoors with us, which was a comfort. They’re usually busy playing in the garden so it was nice to have them around. They were all pretty affectionate but Sooty was especially snuggly and I gratefully accepted every invitation to cuddle.

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I posted my weekly blog post, My Lockdown Favourites, and then spent most of the day catching up with my diary. It’s so easy to get behind and that causes me such anxiety. I also spent a bit of time at the piano and continued messing around with a couple of song ideas I’ve been working on recently. I’ve been experimenting with writing from the point of view of fictional and historical characters over lockdown and although I find it much harder than writing about my personal experiences, it’s a fun challenge and one that I think is improving my songwriting skills, as well as resulting in some interesting songs. So, all in all, it was an okay day.

In the evening, one of my parents came over for dinner in the garden. We’d also planned to watch Hamilton together but given how stressed and anxious I’d been, we decided to postpone that until next time so that I’d actually be able to enjoy it. I’ve really been looking forward to seeing it so I was grateful for the flexibility; I wanted to be able to really get stuck in and engage with it and I just didn’t feel able to that day. Still, it was really nice to see her in really life and hang out together.

When she left, me and Mum watched a couple of episodes of The Mentalist while I did some diary writing and then we went to bed, far too late as usual. Sleeping badly has got me all twisted up about going to bed so I dread it and put it off and usually end up sleeping worse because of it. It’s a habit I’m trying to break but so far I haven’t done very well. It’s just so easy to get sucked into trying to finish whatever I’m doing.


SUNDAY

I slept restlessly (as is my new normal) and woke up feeling tired and low. But I dragged myself up and me and Mum fed the cats – it really is a two person job with five very eager cats. They’re so cute though and watching them practically inhale their food and then skip out into the garden to play is a good way to start the day.

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Mum headed out straight away and drove to our gym since she hasn’t been able to get anyone on the phone. Because of my Chronic Fatigue and the ongoing problems with my joints, weight bearing exercise can be really painful so swimming is really the only serious exercise I can do. I’m really concerned that gyms are opening too early but as they are, I at least wanted to know what the safety precautions are and what my options might be. Our gym has a therapy pool that was always empty first thing in the morning so we would use that but when she returned, she reported that the therapy pool wasn’t an option because they didn’t have enough life guards yet. And when it came to their safety precautions, I just didn’t feel like it was worth the risk. But we’re going to keep talking to them and try to work out an arrangement as a disabled member. So it’s not the end of the road but it was very disappointing and didn’t help my mood.

I was supposed to have a music lesson (via Zoom) but my anxiety was even worse than the day before so, in the end, I cancelled it. Fortunately my teacher is one of my parents and so she understands that if I say I can’t do something, I really can’t. I’d really tried to motivate myself and push through my anxiety but I just felt like I was going to start crying at any moment. It was just too much.

So I curled up on the sofa with the TV on low and continued catching up with my diary. I always get behind when Taylor Swift releases an album because I end up writing so much about it – the lyrics, what I like and what I’d do differently, the production, my overall thoughts – and sticking in interesting analyses from Tumblr. I’m always amazed at how quickly some people are able to analyse a song and see all the layers while I’m still overwhelmed by the amount of layers and all the emotions the songs evoke.

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I also did a bit more work organising my photo library but I hadn’t got very far before I was interrupted (very pleasantly) by one of my parents dropping in to say hello. She hadn’t planned on staying long but then we got talking about ‘folklore.’ She’s a huge music nerd so she’s always interested to know what I’m listening to. I played her a couple of the songs and that turned into a full album listening party, which was really fun, although I’m always a little anxious about playing her music that’s special to me because she can have really strong opinions. But she was really into it (she particularly liked ‘mad woman’) and asked me to share it with her so she could listen to it some more. So that was very cool.

I ended the day having dinner and watching The Mentalist with Mum (we are both complete saps when it comes to the Jane and Lisbon relationship in the final season) while I continued writing my diary.


So that’s another week of my lockdown experience. I feel like, aside from unexpected difficulties with my mental health or an autistic meltdown, I’m finding a groove where I’m as productive and comfortable as I can be. It’s far from what I would’ve wished for during this period (apart from the new Taylor Swift album) but I’m cautiously optimistic that I’m managing a bit better, in the sense that I’m better at taking things day by day.

So I hope this was interesting to read, interesting to see someone else’s experience and maybe escape your own life for a bit. I hope you’re all doing well, staying safe and coping the best you can.

A Week In My Life (in Lockdown)

It’s been a while since I did a ‘week in my life’ post and I haven’t done one about lockdown, mainly because I feel like most of my days are incredibly similar, which wouldn’t exactly make for a scintillating post. But I saw the idea in my ‘blog ideas’ list and realised that over the last few weeks, I have managed to be a bit more productive (with my mental health fluctuating so wildly, it’s hard to really get into anything) and so each day is looking more like its own entity.

The week in this post started on Monday 22nd June and ended on Sunday 28th June.


MONDAY

Even though I don’t have anywhere to be, I’m still getting up relatively early, partly because I’m at my best mentally in the mornings (generally) and partly because we have five cats who are always very eager for breakfast. They’re actually really helpful when it comes to maintaining some kind of routine; sometimes I think it’s easier when there’s something external to build from, rather than trying to build it from nothing.

Cats fed, I settled on the sofa and replied to all the messages on my phone that were waiting for me. In times of mental distress (which there is a lot of lately), I tend to abandon my phone and withdraw from communications because it’s all just more than I can handle. However, it can then be a rather daunting task when I feel able to engage again. But I managed to reply to everyone and messaged some of my friends that I hadn’t checked in with for a while.

I spent the morning sorting through my tech box of electronics, my store of everything electronic, from spare pairs of headphones to camera equipment to cables I know longer own the devices for – I’m sorting through all of my possessions and this was next on my list. I went through it, throwing out the stuff that was damaged or so old that it was no longer useable, piling up some stuff to give away, and organising the remaining items by function. I certainly don’t need the big box anymore.

I didn’t stop there though. I went through all eight of the USB sticks I’d found, deleting the files I didn’t want and storing those I did. I now have multiple memory sticks empty and ready to go whenever I need them. And then I started on the hard drives, most of them assorted back ups of my laptop. That’s a job that’s going to take considerable time. But I’ve assigned each of them a function and started moving the relevant files. I can’t have done more than a quarter of the work and even that took most of the day.

Eventually I gave up, having spent so much time on it that I kept getting confused about which hard drive I was in. So I disconnected them, packed them away, and did a couple of hours work on my blog post for the kittens’ birthday post (here). Me and Mum had dinner together, continuing our rewatch of Nikita, and then I spent about forty five minutes at the piano, during which I recorded this:

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This song calms my soul ♥️ @sarabareilles

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Then we fed and settled the cats before going to bed.


TUESDAY

It was a quiet day. I spent most of it working at my laptop, finishing the blog post for the kittens’ birthday the next day and writing the one about coming off Pregabalin (here). I also planned out the next few as well, with sketches of the rough post structures. So it felt like a pretty productive day, which I was pleased with.

My Mum and I usually work pretty companionably since her desk is in the living room and I tend to work from the sofa (it’s better for the physical pain that I usually deal with to some degree or another – I need to get a specifically supportive desk chair but I’d have to go and try them out, something I can’t – and wouldn’t choose to – do until it’s safe). But recently she’s been working at the kitchen table, paper spread out around her as she transfers her accounts to a new system. It’s weird, going from being basically on top of each other to almost feeling like I’m alone in the house.

We reconvened in the evening, having dinner with several more episodes of Nikita, and then I sat at the piano, playing for almost an hour, methodically practicing each of the songs I’ve been learning recently. Thank god my neighbours are so easygoing and even supportive of my music because I usually ending up playing fairly late at night and even though I try to keep it as quiet as possible, some noise does drift through the walls.

I was just going to bed when I got a Twitter notification that Ingrid Andress is doing a virtual show on Tuesday 30th June. I love her and was supposed to see her live when I went to the US (before the trip was scuttled by the pandemic) so that was really exciting. I went straight to my computer to get a ticket and thank god I did because it was already difficult to get a ticket. I also managed to get a meet and greet, which should be fun; I have no idea how it will work online (plus it will be about 3am my time…) but it will be really nice to see her again. I’ve been going to her shows and chatting with her afterwards for the last several years so I’m glad that lockdown won’t prevent that.

(Note from present me to past me: it was an awesome show and I really enjoyed my chat with Ingrid.)


WEDNESDAY

It was the kittens’ first birthday so we didn’t delay in heading downstairs and presenting them with their present. They both had a go at it but it was Sweep that eventually managed to open it, revealing the birthday cake shaped toy. Despite not having had breakfast yet, they were both very excited and played with it enthusiastically. It remained in tact for about twenty minutes before Sooty managed to tear the felt flame of the candle off it… Sigh. Ah well. They don’t seem to mind.

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Unfortunately, I ended up getting caught in a panic spiral about the loosening of lockdown (I know I’m not the only one who feels that the government cares more about the economy and their reputation than the lives of the British public) and the scientists declaring that they feel we’ll still be dealing with the pandemic next year, that a second wave is extremely likely. The idea of feeling so terrified and so unsafe and so worried for my loved ones (plus the uncertainty around my education and my career) for all that time is exhausting and makes me feel almost overwhelmingly sick.

In hindsight, it probably turned into a meltdown but I didn’t really process that thought at the time. The intensity of my emotions are so extreme at the moment that it can be hard to clearly identify them within the mess I’m feeling. In the end, I was so worn out that I fell asleep on the sofa and didn’t wake up for three hours, a common reaction to a meltdown, for me at least.

When I woke up, I didn’t feel better – that’s not how it works, at least for me – but my head was a little clearer. WordPress had been playing up on my laptop so I hadn’t been able to post the kitten birthday post but eventually I got it up, complete with a video of the kittens: one second a day everyday for the first year of their lives…

In the evening, I spent about an hour on FaceTime with one of my friends. We had a good moan about missing each other and the things we can’t do, drooled over the guitars we wish we could afford, made plans for the first time we can hang out properly again. It was fun and nice and as normal as you can get in a time like this. Mum had wandered in and out of the room during the conversation and commented that we sounded like we always do, hanging out as if we were on opposite ends of the sofa. That made me laugh.

We had dinner together and continued our rewatch of Nikita, staying up far too late.


THURSDAY

I’d struggled to sleep with the heat so I woke up, still tired and with a throbbing headache. Not exactly the greatest start to a day.

I sorted the cats and then spent some time tidying the living room and sorting out my space: it had gotten pretty chaotic with the various stationary and electronics that I always have within reach due to my frequent need for them. It’s definitely better and I’m always calmer and more productive in a tidy space.

I’d intended to do some more organising of my hard drives but the rising heat (over 30 degrees) was only making my headache worse. I ended up lying on the sofa with my eyes covered, waiting for the painkillers to kick in, except I accidentally fell asleep and didn’t wake up until about three hours later. Thankfully I slept through the hottest part of the day: I don’t cope very well in the heat. The cats were struggling too, poor babies, stretched out on the cool of the kitchen floor. I’ve never seen them look so flat.

I didn’t manage a huge amount because the headache never really abated but I did get a few bits and pieces done: some research for the blog, some blog writing, watching a bit of TV. But most of my energy was focussed on managing the headache; I spent a lot of time with my eyes covered, blocking out the light.

Mum and I kept to our evening routine of dinner and Nikita rewatch (we’ve just finished season two, which has such a great finale) and then, to finish off the evening, I listened to the two tracks that Richard (my writing partner) had sent me and gave him my feedback. I loved them: they’re both really cool but I had a handful of comments that can hopefully be of use. I also sent him a song of mine to listen to before we start work on the production.

That done, I went to bed but it was so hot and humid that I felt like I could barely breathe.


FRIDAY

It was so hot that I just couldn’t sleep. It wasn’t until about five am that I finally drifted off. It was uncomfortable and frustrating but as least I got to witness the incredible thunderstorm that started at about two. There was a lot of lightning and heavy rain, although not much thunder. I sat up and watched it for ages. I absolutely love thunderstorms; they’re my favourite kind of weather. The air just feels different and I feel lighter. Apparently thunderstorms create negative ions in the atmosphere and that’s where that feeling comes from (x).

I struggled up at eight thirty and managed to have breakfast and a shower in time to relax for a moment and collect my thoughts before my therapy session. It’s taken me a while to get used to therapy via Zoom and while I still think face to face is better (and I really miss it), I am really grateful for it. I know that going without therapy during this time would be incredibly damaging for my mental health. I think it’s probably fair to say that we’re not necessarily focussed on making progress right now, rather we’re focussing on managing my emotions and the things I’m struggling with in the present moment, like my overwhelming fear of going outside and my sudden inability to sleep properly to name a few. I mean, technically it all comes under distress tolerance, one of the fundamental areas of Dialectical Behaviour Therapy so I guess we are making progress in a sense. Anyway, we had a pretty intense session because of several tough things going on at the moment, not helped by my lack of sleep. By the time we were done, I was exhausted.

I had a gentle afternoon, watching Nikita with Mum, and then napped on the sofa for a couple of hours. Three hours of sleep really isn’t enough. Throw in a tough therapy session and I was completely useless. I wasn’t going to make it to the end of the day without a nap.

In the evening, we had a socially distanced dinner and movie with one of my parents (she doesn’t live with us). Despite keeping up to date with the briefings and doing my own research, I’m still really confused about what the official safety guidelines are so we’re just sure to be really careful: apart from seeing each other now and then, none of us go out for anything other than the essentials, we social distance when we’re together, and we keep the space (and ourselves) as clean/hygienic as possible. It’s hard not being able to behave naturally together – having to be so conscious of the risks all of the time – but it’s so, so good to see her and hang out and have just a touch of normality, even if it is only a touch. I’ll take what I can get. Getting to see her in person is better than not getting to see her in person.

Despite my nap, I was tired and so me and Mum had a quiet evening together. Exhaustion always makes my anxiety worse so I just needed some time with her. Sometimes we joke that, rather than an emotional support animal, I have her: my emotional support person.

Always far too late (I swear I’m trying to maintain a regular sleep pattern), we fed and settled the cats before going to bed.


SATURDAY

I slept better but still not well and I woke up feeling very anxious and unsettled, usually how I feel when I’ve had nightmares but can’t quite remember them – I definitely want to write a post about how the pandemic has affected sleep and the increased number of nightmares. It was still quite early so I stayed in bed, trying to shed the feeling. The cool, grey weather helped.

Eventually I got up, fed the cats, and managed to get a few good cuddles in, which also helped. Although nothing helped as much as the Diazepam I took.

I had a quiet morning, doing some admin, some blog post writing, and a couple of video calls to family and then I spent the afternoon catching up with my diary. The one mental health problem that hasn’t been too badly affected by the pandemic and lockdown is my OCD. It’s much easier – and quicker – to write down everything that happens when so much less is happening; before lockdown, busy days could take hours and hours to write up. My ability to concentrate has been seriously compromised by my anxiety so it still takes longer than it should but at least, with emptier days, it balances out a bit.

Mum and I had dinner, continuing our rewatch of Nikita, and then I spent some time at the piano. One of the things I really wanted to use my empty semester – and I guess, now the lockdown – for was improving my musical skills and at the moment, I’m just really in love with playing the piano. I’ve definitely improved already, which is really satisfying. I practiced my current repertoire and then tried to work out a new song. But it was tricky and I was tired so I didn’t get far before giving up – for the night, not on the song in general.

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It was late but before going to bed, Mum (who used to be a full-time massage therapist, although it’s no longer her primary job) massaged my neck and right shoulder. My Trichotillomania urges have gone into overdrive since Covid-19 emerged and they’ve only gotten worse as time has passed. How I haven’t ended up with any bald spots, I have no idea. But because of my excessive pulling, my arm and shoulder have seized up and become really quite painful. The muscles actually hurt to touch but she was very gentle and I do think it helped.

We went to bed and I actually managed to get to sleep fairly quickly, which is a bit of a miracle at the moment.


SUNDAY

I managed to sleep in a bit, which was nice, although I’d still had busy dreams. It took me a while to make sense of what was the dream and what was real and when I dragged myself out of bed, I felt slow and sluggish. Fortunately the cats had been very patient about breakfast. Having said that, they were very pleased to see us (and vocal about it).

I had breakfast and a shower, leaving me with fifteen minutes or so to clear my head before my music lesson. One of my parents is a professional musician and music teacher and as another of my goals for this period of time is to improve my understanding of musical theory, I’d asked a while ago if we could spend some time on it together (well, via Zoom). So, every Sunday, we dedicate a couple of hours (sometimes more if we’re on a roll) to working out the chords to a song, figuring out the rhythms to play, etc and then discussing the theory that underpins those things in that particular song. Then I practice it in the week before our next session. It’s hard work – I’ve always found theory quite difficult to really understand – but I do think I’m getting better, if slowly. I think learning it in a practical, applied way is helping and it’s much more fun than just trying to memorise it from a book. To my amusement, it’s basically turned into an attempt to learn every Kalie Shorr song because I love her writing so much but it’s also given me a new appreciation for the songs because I’m seeing how much more to them there is. As I said, it’s difficult and I’m exhausted afterwards (probably from the effort of keeping my concentration on it – a serious job at the moment) but it feels good to be learning and trying to improve my skills.

My concentration is always pretty poor afterwards but I did manage to get some blog writing done. I’m really enjoying this style of writing at the moment; it just flows really easily. I’m also trying to get ahead of myself by a couple of posts, creating a buffer of sorts, just in case I hit a period of writers’ block. That happened a while back and suddenly writing became really difficult and stressful, not exactly something I need more of right now. So I’m taking advantage of (and enjoying) how good and effortless it feels.

Early evening, Mum and I FaceTimed with my Granny. Mum speaks with her everyday while I join in every few days (sometimes in the frame and sometimes just in the room, adding to the conversation). We do the crossword together – something we’ve always done when we’re actually together – which is really fun and catch up on each other’s days. I worry about her, her age making her more vulnerable and her being alone during lockdown. We (especially my Mum and my aunt and uncle) try and talk as much as possible and suggest new things to do and new forms of entertainment (especially when her television died and no one would go out to fix it) but I still worry.

After we hung up, I tried to set up the laptop that had finally arrived from DSA, only to find out that they’d sent me the wrong one. Fortunately, I discovered that (sadly, I’m experienced enough with the problems of getting support as a disabled person to check) before I loaded all my files onto it. So we got in contact with them (and after a lot of back and forth) and they’re sending another one to swap it with. When this process is officially over – as in I’ve got the laptop and everything is signed off on – I will write a blog post about this whole process because it has been long and complicated and stressful and I think these experiences need to be out there.

Me and Mum had dinner with more Nikita and I did some more diary writing.

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Somewhere closer to a sensible bedtime, we fed and settled the cats and went to bed.


I hope this was somewhat interesting. When I started writing it, I hadn’t counted on a heatwave that made me just this side non-functional for two days; I’d been hoping to be more productive. I know that we don’t have to be productive everyday but achieving something, even something small does help me to manage my mental health and keep my depression and anxiety from getting into a cycle that’s difficult to break out of.

Anyway, that was a week in lockdown: some routine and some different activities to mix things up. This seems to be the best approach for me. The routine is comforting but the variation keeps me from feeling like I’m in a time loop, living the same day over and over again.

I hope you’re all keeping safe and healthy in these times. I hope lockdown isn’t too traumatic for you and I’m sure you’re managing the best that you can.