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 September 12, 2020
Since the academic year is starting up again, I thought I’d write about my experience with getting support for my Masters Degree as a disabled student. The DSA (Disabled Student Allowance) process can be very difficult so, having been through it twice now, I thought I’d share my experience. I don’t know if I’ve had a good, bad, or typical experience but I thought that simply putting the experience out there might be helpful to anyone at the beginning of this process, to give them an idea of what may happen down the line. As I’ve already said, it’s difficult and tiring but that’s not to say that I would discourage someone from applying. I was just very naive going into it the first time and was blindsided by how complicated and stressful it was; I’m lucky to have had help going through this both times. Having support from sources such as DSA can be hugely beneficial but I wouldn’t want anyone going into the application process unaware so I thought I’d share my experience as I haven’t seen many accounts of the whole process…
I wrote about my first assessment in great detail here, so I suggest reading that but I’ll also sum it up here to make sure I’m sharing the full experience in one place. So… That first assessment was a complete disaster. The assessor was perfectly nice but when we got to discussing what support DSA was willing to offer me, it went downhill fast. They would offer me a laptop, but not one with an operating system required to run the programs I needed for my course because apparently that was a course specific need rather than a disability specific need despite the fact that I – a disabled student – needed them to do my course. They wouldn’t offer me any travel support towards commuting because I’d ‘chosen’ to live at home when I actually had to live at home because of my disabilities. And they have no direct contact with the universities themselves so they couldn’t offer any support through them. So, essentially, they weren’t going to offer me anything because my needs didn’t fit their guidelines, because my disability didn’t fit with their idea of disability. It was hugely frustrating and distressing and I left in tears. I felt completely let down and abandoned.
By the end of the assessment, I was so utterly distressed that the assessor told us that we could appeal, which we did. The second assessment was with a different person, a really lovely woman called Rebecca, and was much longer and in much more depth. We went through everything again in minute detail: from the necessary computer specifications to the exact details of an average university day’s travel. She went through all the possibilities and all the potential outcomes, as well as the potential roadblocks and the reasonings behind them. It was a lot of information but I did leave feeling more hopeful; I really felt like she was on the case, like she was really committed to helping me get as much support as possible. Her report went through several different people before reaching a senior SFE (Student Finance England). It was initially rejected but then, when we provided them with documentation proving I receive PIP (Personal Independence Payment), they changed their minds and granted me a new laptop, software and apps to help with my lectures, independent study, and mental health, and mentoring through the National Autistic Society (although it seems that, due to the pandemic, this service no longer exists). I didn’t get any support for the travel but I’m grateful for what I did get, plus the travel costs haven’t exactly been an issue over the last few months… From that second assessment, it was four months before I received the support I was awarded.
In my experience, the whole DSA process is very slow. It was slow when I went through it during my Bachelor’s Degree and it’s been even slower this time, presumably due to the pandemic. I started this process in January – much later than intended but my mental health was so bad that I couldn’t handle the in person assessment – and didn’t get the equipment until June. Then the laptop that arrived wasn’t the right one and so we had to spend another two weeks – and a somewhat ridiculous amount of emails proving that it was in fact the wrong one – organising the swap, insuring that I got the one that my DSA assessment had determined I needed. A couple of weeks later, the new laptop arrived but setting it up took much longer than it should have. This was due to how the people who’d previously worked on my laptop had set it up, making the transfer of all my files much more complicated and messy. It’s still not as sorted as I would like it to be but it is functional.
Factoring in all of this, had I been doing my Masters in one year rather than two, I would’ve had this equipment for less than a semester before I finished the course. Yes, this was affected by the pandemic, problems with the university Autism support person, and the late start in pursuing DSA but that was due to the reasons I was in need of support so it’s not the most efficient system in that regard: what happens if you’re too disabled by your disability to seek help?
The laptop and software that DSA have provided me with has been invaluable, especially since my laptop was dying a slow death around the time I received the new one. We didn’t get everything we were hoping for but it’s definitely better to have it than to not. So, having now been through this twice, I thought I’d offer some tips that would’ve been helpful to me before going through the process…
I hope this post is helpful for anyone considering or going through the process. I hope I haven’t made it sound too scary. I really do recommend it but I wouldn’t want anyone to be unaware of how difficult and stressful it can be. You deserve to get the support you need and I only want to make that easier, if only by arming you with information and advice. So, if you’re going through it, I wish you the best of luck and I’m rooting for you.
Category: anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, depression, meltdowns, mental health, ocd, tips, university Tagged: actuallyautistic, actuallyborderline, actuallybpd, actuallydepressed, anxiety, anxiety disorder, asd, assessment, autism, autism spectrum disorder, autism support, autistic, autistic adult, autistic student, borderline personality disorder, bpd, coronavirus, covid-19, degree, depression, disability, disability stigma, disability support, disabled, disabled student, disabled student allowance, dsa, dsa assessment, gad, general anxiety disorder, invisible disability, invisible illness, lockdown 2020, masters degree, masters part time, mental health, mental illness, mental illness stigma, neurodiverse, neurodiversity, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, part time, part time masters student, part time student, personal independence payment, pip, sfe, stigma, student finance england, tips, uni, university, university support
Posted on August 29, 2020
I hadn’t intended to do another of these posts so soon but again, when I looked back at my diary at the end of the week, it felt like another very different week in my experience of lockdown. I guess I’m just trying to represent my experience of this time – and the variation within it depending on both the internal and external circumstances – as accurately as possible, for myself as much as anyone else.
The week in this post started on Monday 3rd August and ended on Sunday 9th August.
I was up by eight thirty and already at work. I planned out my week and then more specifically my day in my bullet journal before clearing my email inbox of rubbish and attending to the rest.
Next, I got to work on the ‘Back To Life‘ music video. Richard had sent me the first draft and I went through it clip by clip, making notes on what I liked, what I didn’t, any changes I wanted to make, any suggestions I had (all against their time codes). It’s not the most fun job in the world: staring at your own face for hours can get pretty draining, whether you’re a self conscious person or not, but I got it done and sent my notes back to Richard.
My main plan for the day was a writing session with Richard but I had a bit of time before our start time so I did some work on my next blog post before setting up our Zoom meeting. We’re working on multiple projects at the moment and we’d planned to work on some of my stuff that day. There was one song we’ve been working on for a couple of sessions now but while I liked the sound of the production, it just didn’t feel like it was the right mood for the song. So I made the slightly terrifying suggestion of starting over and coming at it from a different angle. That’s what we ended up doing, using different reference tracks and instrumentation. It sounded so much better by the time we called it a day.
We also spent a bit of time working on a second song, creating the basic shape of the track and deciding what sort of instrumentation fitted the mood of the song. So it was a very productive session, a very productive four hours.
View this post on Instagram
A post shared by Lauren Alex Hooper (@laurenalexhooper) on
We hung up and I stretched out on the sofa, exhausted. I love writing sessions, whether they’re focussed more on the song itself or the production, but I do find them tiring and especially so when we’re working over Zoom. It’s just that bit harder to translate your ideas to the other person when the time lag complicates your communication or you can’t point to something on their screen and so on. I’m grateful that we can have our sessions at all but I do find them harder than face-to-face sessions and greatly look forward to it being safe to have those again.
I spent the afternoon and evening working on various blog posts with the TV on in the background. It was nice and gentle but I was still being productive, which definitely helps with my mental health and in turn, my ability to manage this period of time in general. Then I did some catching up with my diary before getting ready for bed.
I was just finishing up when I got a text from Richard with an MP3 attached, the song we’d spent most of our session working on. After our initial struggle with it, I was amazed by how good it sounded, how perfectly the new production fitted with the song. I went to bed, excited and proud of what we’d achieved.
Me and Mum got up early and headed for the nearby woods for a dog walk with one of our friends. She’s just recently gotten a rescue puppy (who is utterly gorgeous) and as well as seeing each other and catching up, she wanted some advice from us as (previous) dog owners. I had been really looking forward to it but I was also anxious about going out (a constant anxiety still) and then I almost had a meltdown, triggered by difficulties with managing my mask and my glasses. I don’t know if any of you fellow glasses wearers have struggled with this but my glasses rest right where the wire of the mask is and I constantly battle with keeping them both functional and at least somewhat comfortable. I’ve since bought a mask that doesn’t have a wire as my glasses keep the top in place but for this particular walk, I ended up doing a lot of it without my glasses, which (had everything been normal, wouldn’t have bothered me all that much) just added another layer of stress because I really had to focus on where I was putting my feet – I’m so short sighted that even the ground is very blurry without my glasses.
I hate sounding so negative over what was a really lovely walk – it was just an unexpectedly difficult start. It was wonderful to see this friend again and it was so nice to have some dog time, especially puppy play and cuddles. I’ve missed our dog so much since we said goodbye to him in January but I doubt any of us will be ready for another dog for a good while so this was a nice compromise. My anxieties aside, it was a very pleasant way to start the day, although I was a bit knackered afterwards. Exercise is an area that’s really suffered for me throughout lockdown so I think it was a bit of shock to the system.
We came home and I ended up having a pretty quiet day. I mainly worked on catching up with my diary – my Moby Dick – and spending time with my Mum. We’re usually pretty independent during the day and then come together in the evenings but that evening I had a movie date with a group of friends.
At seven, we started our video call and ended up spending an hour catching up and just chatting, which was really lovely. It’s been a long time since our last date for various reasons so there was a lot to catch up on and I think we’d all just missed each other’s company. Speaking for myself, I know that I’d really missed them and was just delighted to see their faces again.
Eventually we stopped rambling and got into the movie. We’ve been binging the Studio Ghibli films and this time, we watched Laputa: Castle in the Sky. I absolutely loved it. I loved the story and it was just so beautiful – I mean, they’re all beautifully animated but this one seemed particularly stunning. It’s definitely at the top of my list of Studio Ghibli films. We talked about it a bit afterwards and while we’d had differing opinions on the last film (Kiki’s Delivery Service), we all really enjoyed this one.
When we said goodbye and hung up, it was getting pretty late so I started getting ready to go to bed. I’m not sure if I’ve mentioned it already but over the last couple of months, I’ve been struggling with really bad pain in my arms, from shoulder to finger tips. That night, my right arm and shoulder were really, really hurting and even though my Mum gave me a massage, it was still really bad and made it difficult to get to sleep.
I slept really badly because my shoulder was so painful. Every time I rolled over and put my weight on it, I woke up and had to readjust my position and then get back to sleep again. It wasn’t a restful night and I really struggled to wake up. As soon as my brain was fully awake, I felt the anxiety kick in; I just felt so overwhelmed by how much I feel like I have to get done before university starts, in whatever form that takes.
The pain in my shoulder only got worse as I used my arm so my Mum worked out a schedule of painkillers to keep the pain at a minimum and keep me using it so I wouldn’t seize up or start compensating with the other shoulder. It’s been a problem for a while but since it’s only getting worse, we decided to call my GP the next morning and try to get a Zoom appointment.
I did some admin for the upcoming release of my new single, ‘Back To Life,’ and then settled in to work on my photo albums. After finally finishing the organisation of my photo library, I’d selected the photos I wanted for my physical photo albums (which were about eighteen months out of date) and sent them off to be printed. They’d arrived that morning and so I went through them, slowly getting them in chronological order. It took all afternoon and I still had to put them into the albums but it was very exciting to be so close to finishing such a mammoth job.
Early evening, I did some more admin work, replying to some emails, and listening to some songs a friend had sent me to give feedback on. I’d left it a bit late in the day to do the whole lot but I managed to do an initial listen to all of them to get the overall vibe and an in-depth listen of a couple, making detailed notes of my thoughts and suggestions. So it was a productive evening.
Then me and Mum had dinner in front of The Mentalist, which we’ve been rewatching for a couple of weeks now. I love the show but I particularly love its second life, with the FBI team rather than the CBI team. *Spoiler Alert* We’d reached the episode where Vega dies, where they attend her funeral, and Jane and Lisbon discuss the future of their relationship when they work such dangerous jobs. It’s a heartbreaking episode and even though we’ve both seen it multiple times before, we both sat there with tears streaming down our faces. What can I say, I get attached to fictional characters. Like, very attached.
It had been pretty hot all day so it took me a while to get to sleep. I don’t do well in the heat so I was dreading the predicted heatwave.
One of my cats, Lucy (or Queen Lucy as we often call her due to her being the cat we’ve had the longest and therefore the cat that rules the house), woke me up at four, yowling loudly as she played with a toy. At almost any other time of day, it would’ve been very cute but at four am, not so much. It took me ages to get back to sleep.
I got up at nine and finished listening to the songs I’d started working through the night before. I wrote down all my feedback for the remaining songs and then listened to them all again to see if any new thoughts came to me. I also included questions about various lyrics and production choices, challenging the meanings and choices so that everything would be really tight and cohesive. I was deliberately picky, as my friend had asked me to be (sorry, I’m being deliberately vague about who it is because I don’t want to announce anyone’s project before they have). As good friends, they trust my critique, rather than feeling like I’m being critical; we’ve worked together a lot so we trust each other to just want the song to be the best song possible.
That done, I spent a couple of hours catching up with my diary (I’m just so behind at the moment) and then had my therapy session at four. We spent most of the hour just catching up on the week and talking about how I’d managed the challenges and the difficulties that had come up. With the pandemic, we’re doing A LOT of distress tolerance. I do wish we could move forward and work on some of my long standing issues but from past experience, I know that when you start to unravel some of those things, you often feel worse before you feel better and I just don’t think I can handle that right now. I’m just about managing to cope day to day and I really don’t want to make things worse for myself when I’ve worked so hard to even get to this point with the pandemic going on.
I FaceTimed with one of my parents while my Mum had the Zoom appointment with the doctor. I still struggle with talking to doctors, I’m still figuring out how to do Zoom meetings with new or less than well known people, and I struggle with communication in general. So me and Mum talked about everything we wanted the doctor to know and then she did the call. She was on the computer for a long time but when she came back, she did have some good news although a large chunk of the plan does involve waiting, which I’m not super thrilled about. But my doctor has adjusted the medication plan a bit (she’ll prescribe me something stronger if it continues to get worse but for now, we’re sticking with over the counter stuff to avoid extra side effects) and referred me to occupational rheumatology where they’ll probably fit me for support braces or refer me on to physiotherapy or both. But that’s unlikely to happen for a while. So pain medication, massage, and trying to build or improve habits that at the very least don’t make the pain worse. I’m limited exercise wise by not being able to swim but we’ve set up a rough badminton court in the garden to allow for some gentle exercise, especially for my arms and shoulders.
Me and Mum had an early dinner with The Mentalist. *Spoiler Alert* We’d finally reached the final episode where Jane and Lisbon get married and it’s so lovely to see them all so happy, especially Jane, after going through so much sadness and struggle. I wasn’t convinced by their relationship at first but then I fell in love with it and watching the wedding scene usually results with me grinning like an idiot or actually crying at how sweet it is.
I was just thinking about going to bed when Richard texted me to remind me that we were announcing the release of ‘Back To Life‘ the next day, which had somehow completely slipped my mind. I swear, the pandemic has completely messed with my head – life pre-pandemic feels a bit like a dream and the way we did things feels kind of hazy. So suddenly I was in a panic about what to say when I announced the release of the song, especially one with the title ‘Back To Life’ during a pandemic (something that’s been bothering me for a long time). So I ended up spending more than an hour (at least) figuring out how to say what I wanted to say and how to say it in the best way possible.
I finally got to bed around midnight but it was so hot that, even after I discarded my duvet, it still took me a long time to get to sleep.
Lucy was gracious enough to let me sleep until five this time before waking me up, chasing a toy around my room, and then I couldn’t get back to sleep as hard as I tried. It was very frustrating.
When Mum got up, we had breakfast and rewatched *Spoiler Alert* the wedding scene in the final episode of The Mentalist, grinning like the sappy idiots we are. No regrets. It was a nice, positive way to start the day, watching characters you love get their happily ever after.
I spent the morning working on my blog post about JK Rowling’s recent transphobic comments and how complicated it is to reconcile a childhood hero with the problematic person they are in the present. I’m absolutely not condoning what she’s said or making excuses for her – if you’ve read the post, you’ll know that I refuse to support her while she makes such insensitive, harmful statements – but I also wanted to comment on some of the other connected issues. While her transphobia is without question the most important issue here, there are multiple points within the overall problem, like how her prejudices may have bled into the books and how difficult it is to make sense of these two different versions of her. I wanted to explore as many of these thoughts as possible.
It was so hot by the middle of the day that I felt like I was melting; I didn’t want any part of my body to touch any other part. It was horrible. Thank god for the fan I bought a few years back. I was reluctant because it was pretty expensive but having had several unbearably hot summers in a row, it’s been amazing; I would’ve been unable to function without it. I’ve only just been functional with it.
Early afternoon, I had a Zoom session with Richard and we mapped out a more detailed plan for releasing all the content around ‘Back To Life‘ before working on some of his music. We’ve always been a well matched pair because while his strengths are more musical, mine are more lyrical and so we’ve always been able to support each other really well. That’s one of the things that’s always felt really special about our working relationship.
Eventually I got too tired to do much good, so we scheduled another session and I had a rest, doing some blog writing with the TV on in the background.
In the evening, one of my parents – who, I guess, is in our bubble – came over and, while I don’t think you have to social distance if you’re in a bubble, we had dinner and hung out, still keeping a certain level of distance. The three of us are continuing to remain pretty isolated but it still feels sensible to stay somewhat distanced for the most part.
At seven o’clock, my alarm went off and I posted my announcement on my social media accounts…
View this post on Instagram
The fourth single from the Honest EP, written with the amazing @scottcolcombe (and produced by @laurend_d and @richardmarcmusic, who are both incredible), will be released on the 14th August! SWIPE TO SEE THE TITLE ➡️ Given the difficult and often distressing times we’re currently experiencing, I seriously considered delaying the release of new music, especially as we reach the more upbeat songs on the EP. But I didn’t want to leave the story half told. This song represents the upward turn after a painful chapter of my mental health and it feels important to include because while there are brutal lows, there are also wondrous highs. They’re all important and all part of the journey.
A post shared by Lauren Alex Hooper (@laurenalexhooper) on
That done, I felt able to be more present and enjoy the evening and although I was really tired, it was really nice to hang out with my parents. With times such as they are, I never take those moments for granted, especially since I’m not able to see all of my parents yet, together or apart. We don’t have to DO anything in particular; it’s just so nice to be together and talk face to face. It’s still so ingrained in me to greet people with a hug or squeeze their hand that I have to actively struggle against those automatic motions but it doesn’t make me want to burst into tears anymore. I’m just really looking forward to being able to do it again.
When she left, me and Mum settled down with Rizzoli and Isles, another show we haven’t watched in years, and I did some blog post writing. I absolutely agree with the philosophy that our productiveness isn’t tied to our worth as people – I wouldn’t debate that for a second – but I’ve also discovered that being productive plays a massive part in managing my mental health, even if it’s as simple as watching a movie that I’ve wanted to watch for a while but not gotten around to doing so. I guess it just depends on your definition of being productive – I don’t necessarily equate it with ‘producing’ something; it’s just doing something that I intended to do. If I intend to have a quiet and restful day and I do, then I have been productive.
I woke up far too early, which was annoying because I was still tired and sleepy but I definitely enjoyed the cool and the quiet. It’s my favourite time of day – before the world wakes up and starts rushing around, making so much noise – and we were due for another really hot day so I relished the cool air.
I had as quick a scroll through my social media as I could manage, having not been on it for a couple of days (apart from posting about ‘Back To Life‘). As I’ve said previously – during this time – it’s been better for my mental health to stay away from social media but then I do miss seeing what my friends and family are up to. So I’m trying to find a balance and for the most part, I think I’m doing okay.
That done, I settled into the living room and got to work, putting Friends on low for background noise. I posted my blog post about exam results and then spent the rest of the morning working on other blog posts.
By the middle of the day, I was really struggling to do anything because it was just so hot. I felt like I was melting and my brain seemed to be functioning very slowly, not unlike my laptop, which was definitely overheating with the fan whirring loudly. So I decided to take a break and work on something that required much less movement and brain power: slotting my newly organised photos into my albums. I also used the time to watch a film from my To Watch list – one of my New Year goals was to consume more new content rather than just familiar favourites and the lockdown has a good time to do that. It’s been good for me in other areas too. I’ve been challenging my songwriting skills and trying to write from the perspectives of different characters instead of just from my own life experiences and finding new characters and stories that inspire me has made it a really enjoyable practice.
I ended up watching Fantasy Island (mainly because I love Maggie Q), where a group of people arrive on a tropical island after winning a competition, their prize being to have their greatest fantasy fulfilled. I’d seen quite a few negative reviews of it but personally, I really enjoyed it. It wasn’t life changing but it was interesting and the twists and turns were cool. It was good entertainment and made for a mentally restful afternoon.
In the evening, me and my Mum had dinner together with a couple of episodes of Rizzoli and Isles and I spent a couple of hours working on blog posts. As usual, I put off going to bed, partly because my room was so hot. Again, thank god for my fan.
I slept long and deep, a welcome experience after months of restless sleep at best. I did have some strange dreams, but not disturbing ones. One included a storm cloud on fire, which was incredibly beautiful – much better than some of my previous dreams. I didn’t get up until almost ten but then I dived into the day, intent on being as productive as possible.
I finished my previous week-in-the-life post and then had a music lesson with one of my parents. We worked on the chords for two of the songs I’m working on and then had a long conversation about reharmonisation and how that works. I learnt about that during my BA by only briefly and that was several years ago so, with the Musical Language module coming up, I definitely needed a refresher. We might need to go over it again just to give me a quick reminder but I feel like I’m pretty solid on the basic principles. So that was good to do.
By the time we finished, it was so hot that I didn’t want to move. I lay on the sofa and watched the second series of Liar. It had been airing when we went into lockdown and it just slipped my mind; it only came back to me a month or so later and by that time, it was gone from ITV On Demand. I’d resigned myself to never knowing how it ended but then it popped up on Virgin On Demand. So I watched that through the heat of the day. It wasn’t the best show ever – I felt like there were quite a few inconsistencies and plot holes – but I was glad to see how it ended. Plus I used the time to continue adding the captions to the photos in my albums. So, considering the heat, I feel like I was pretty productive. Oh, and I also posted the first teaser for ‘Back To Life‘ on my social media.
We ended up eating dinner outside on the deck in the cool darkness and then we went inside to watch Rizzoli and Isles with some much appreciated ice cream. I kept working on the photo album captions, making it to March 2020. I was almost giddy with glee at being so close to the finish line.
That giddiness shot through the roof when I checked Instagram to see how the teaser was being received and saw that Desmond Child (writer of Bon Jovi’s ‘Livin’ on a Prayer’ and Ricky Martin’s ‘Livin’ La Vida Loca’ to name just two of his more famous songs) had liked it. I have no idea how he found it but it all but short-circuited my brain. I mean, he’s in the Songwriters Hall of Fame! So that was very, very cool.
This is the screenshot I sent to Richard…
It took me a long time to come down from that high so I didn’t get to bed until midnight. I’m really not doing well with this whole go-to-bed-early plan.
I’m always hesitant to say stuff like this – probably because of a leftover childhood superstition that I’ll jinx things – but I do feel like I’m coping better mentally, that I’ve found a way of managing things day to day. I mean, I’m still not able to read or focus on anything involving big chunks of new information for extended periods of time but generally, I feel like I’ve found a routine that’s working for me. I’m still really struggling emotionally but I don’t think that’s really going to change until it truly starts to feel safe again. The fear and anxiety is just a constant presence in my life that I try to manage, to varying degrees of success.
Category: animals, anxiety, autism, covid-19 pandemic, emotions, meltdowns, mental health, music, sleep, therapy Tagged: a week in my life, actuallyautistic, anxiety, asd, autism, autism spectrum disorder, autistic meltdown, back to life, back to life music video, blog writing, blogging, castle in the sky, cat, cat family, coronavirus, covid-19, cowriting, dbt, degree, degree in songwriting, desmond child, dialectical behaviour therapy, diary, diary writing, distress tolerance, doctor, doctors, dog, dreaming, dreams, face covering, face coverings, face mask, face masks, facemask, facemasks, facetime, family, fantasy island, fatigue, film, friends, glasses, heatwave, indie artist, indie pop, indie release, jk rowling, journaling, laputa: castle in the sky, liar, liar season 2, lockdown, lockdown 2020, massage, masters, masters degree, masters degree in songwriting, masters degree year two, meltdown, mental health, movie, music lesson, music video, musical language, netflix party, new music, new music uk, new release, new single, pain, pandemic, pandemic 2020, pandemic anxiety, pet, photo albums, photo library, pop, production, productivity, reharmonisation, remote writing session, rescue dog, richard marc, richard marc music, richard sanderson, rizzoli and isles, self isolating, self isolation, singersongwriter, singersongwriter life, sleep, social distancing, social media, songwriter, songwriters hall of fame, songwriting, songwriting degree, studio ghibli, the mentalist, therapy, transphobia, tv show, unsigned, unsigned artist, video editing, week in my life, writing session, zoom, zoom calls
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…