Posted on November 21, 2020
As I’ve mentioned before, I’ve struggled with extreme fatigue all my life (I talked about this in my ‘Tired‘ blog post); Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (often referred to collectively as ME/CFS) have been tossed around since I was twelve years old but I wasn’t officially diagnosed until last year. This kind of acute ‘unexplained’ fatigue – unexplained as in there is no obvious cause, such as exercise or lack of sleep – is also a common experience for autistic individuals, as well as related symptoms like headaches and bodily pain.
I’ve been managing these high levels of fatigue for most of my life, trying various things to improve my quality of life. And I continued searching for a cause. I had test after test but nothing ever gave us an explanation. I resisted the ME/CFS diagnosis even as it seemed more and more likely because there’s no cure, not even a reliable method of management, but eventually it seemed the only way to move forward. So, after a long talk with my GP, she officially diagnosed me with Chronic Fatigue Syndrome and we began discussing various options for next steps and support. She referred me to the local Chronic Fatigue Clinic and I anxiously awaited my session.
It was a bitter, heart-wrenching disappointment. I left in tears. Maybe it would’ve been helpful when I first started experiencing these symptoms (I think the longest any of the others there had been struggling was two years) but twelve years in, I knew more than the person delivering the information, had found everything suggested to make no difference or be outright unhelpful, and I just felt so patronised. It was an awful experience and I couldn’t help but feel so angry that this was the best on offer for what I was trying to manage and had been trying to manage alone (in terms of the health system) for more than a decade.
When we spoke to them after said awful session, they referred me to a doctor that we realised I’d previously seen – years and years ago and had a very traumatic experience with. I was obviously very reluctant to go. My Mum and I spent a lot of time talking about it, about the pros and cons of going and not going. The scary thing is that it’s so easy to get kicked off every list with one refusal so I said that I would go, despite having had such a distressing appointment with him – one I’m sure he doesn’t even remember. But before we contacted that clinic, we spoke to my GP again. We explained how upsetting the experience had been and how worried we were that it was only going to be worse this time, considering I would be going in with the baggage of the previous appointment; we told her that I would go if that was how it had to be to continue on this path but she felt that we were right, that it wouldn’t be helpful given the circumstances and as I’d technically already seen him, it wouldn’t cause any problems in the system. We asked if there were any other options and this was when she referred me for the hypermobility assessment (these posts are now out of order, not only because it’s been such a confusing and complicated process, but also because I’ve had trouble keeping things like this clear and ordered in my head since the pandemic started).
I’ve now had this appointment and been diagnosed with hypermobility, which potentially explains (at least in part) my problems with fatigue and pain. (At some point, we’re going to need to lay out all of these diagnoses and work out whether there’s any overlap, whether any of them are now redundant. But that’s a job for another day.) Apparently those with hypermobility are seven times more likely to be autistic, which is a very interesting piece to add to the whole puzzle. The post goes into it in more detail but basically, we’re now waiting to find out whether or not various routes are possible. For example, I’ve been referred for hydrotherapy but we don’t know whether I’ll get it and if I do, when it will be possible with the pandemic and lockdown. That has really stalled things. So it’s one waiting game after another.
But we’re not simply waiting. We – my Mum in particular – are also looking into other angles, other medical professionals who specialise in fatigue or who have studied fatigue in depth. We’ll take any advice we can get. I resisted a diagnosis of CFS for so long because it felt like admitting defeat – an expectation that I would just have to live with it with limited options – but I don’t accept that, not anymore. I’m participating in every research study I can find that I qualify for and my family and I continue to research potential specialists and potential avenues of treatment or even simply more effective management of the symptoms. The pandemic makes it hard but I am not willing to accept that this is going to be my life, that there’s no hope. Not that long ago, NICE (The National Institute for Health and Care Excellence) removed ‘graded exercise therapy’ as a treatment for ME/CFS, after both research and those suffering with the condition proved that it was actually unhelpful at the very least. It’s slow but it’s progress. And I’ll take all the progress I can get.
Category: autism, chronic fatigue syndrome, covid-19 pandemic, diagnosis, sleep, treatment Tagged: asd, autism, autism spectrum disorder, autist, autistic adult, cfs research, change, chronic fatigue, chronic fatigue clinic, chronic fatigue syndrome, chronic pain, diagnoses, diagnosis, doctor, fatigue, gp, graded exercise therapy, hydrotherapy, hydrotherapy referral, hypermobile, hypermobility, hypermobility diagnosis, lockdown, lockdown 2020, me/cfs, multiple diagnoses, myalgic encephalomyelitis, NICE, pandemic, pandemic 2020, progress, referral, research, research study, research volunteer, tired, treatment
Posted on September 26, 2020
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.)
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Category: about me, animals, anxiety, body image, chronic fatigue syndrome, covid-19 pandemic, depression, medication, mental health, music, research, sleep, university Tagged: agents of shield, asd, autism, autism spectrum disorder, autistic, blogging, caffeine, cat, cats, cfs, chloe bennet, chronic fatigue, chronic fatigue syndrome, commuting, concentration, concert, cowriting, daisy johnson, degree, desk, diary, diary writing, disability, disabled, energy, energy levels, exhaustion, family, fatigue, film, friends, inspiration, laptop, lockdown, lockdown 2020, logic pro x, masters degree, me/cfs, myalgic encephalomyelitis, pain, pandemic, pandemic 2020, pandemic anxiety, performing, photo diary, piano, production, recording, red bull, remote writing session, research, research study, research volunteer, richard marc, richard marc music, singer, singersongwriter, singersongwriter life, sleep, sleepiness, songwriter, songwriting, songwriting degree, songwriting session, student, tv show, university, work from home, writing session, zoom
Posted on August 15, 2020
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.
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.
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.
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…
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.
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.
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).
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Most of the things I had planned this summer didn’t end up happening, but there is something I hadn’t planned on that DID happen. And that thing is my 8th studio album, folklore. Surprise 🤗Tonight at midnight I’ll be releasing my entire brand new album of songs I’ve poured all of my whims, dreams, fears, and musings into. I wrote and recorded this music in isolation but got to collaborate with some musical heroes of mine; @aarondessner (who has co-written or produced 11 of the 16 songs), @boniver (who co-wrote and was kind enough to sing on one with me), William Bowery (who co-wrote two with me) and @jackantonoff (who is basically musical family at this point). Engineered by Laura Sisk and Jon Low, mixed by Serban Ghenea & Jon Low. The album photos were shot by the amazing @bethgarrabrant. Before this year I probably would’ve overthought when to release this music at the ‘perfect’ time, but the times we’re living in keep reminding me that nothing is guaranteed. My gut is telling me that if you make something you love, you should just put it out into the world. That’s the side of uncertainty I can get on board with. Love you guys so much ♥️
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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.
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folklore will have 16 songs on the standard edition, but the physical deluxe editions will include a bonus track called “the lakes.” Because this is my 8th studio album, I made 8 deluxe CD editions and 8 deluxe vinyl editions that are available for one week😄 Each deluxe edition has unique covers, photos, and artwork. Available exclusively at taylorswift.com
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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.
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).
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In isolation my imagination has run wild and this album is the result, a collection of songs and stories that flowed like a stream of consciousness. Picking up a pen was my way of escaping into fantasy, history, and memory. I’ve told these stories to the best of my ability with all the love, wonder, and whimsy they deserve. Now it’s up to you to pass them down. folklore is out now. 📷: Beth Garrabrant
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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.
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).
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.
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.
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.
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.
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.
Category: autism, body image, covid-19 pandemic, emotions, event, favourites, meltdowns, mental health, music, therapy, video Tagged: a week in my life, absentia, agents of shield, anxiety, back to life, behind the scenes, blog writing, blogging, cat, cats, cfs, chronic fatigue, chronic fatigue syndrome, coronavirus, covid-19, daisy johnson, dbt, diary, disordered eating, disturbed sleep, ep, face mask, facemask, facetime, family, fatigue, folklore, food, friends, glasses, gretsch, guitar, gym, hair dye, honest ep, interview, journal, laptop, lockdown, low mood, making a music video, mask, massage, me/cfs, mood, music lesson, music theory, music video, music video shoot, new guitar, new music, new single, organisation, pain, pandemic, photo albums, photo library, pool, quarantine, quote, safety, safety precautions, singer, singersongwriter, singersongwriter life, sleep, stress, swimming, taylor swift, the mentalist, tumblr, tv show, university, video shoot, wear a mask, week in my life, weight
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…