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 21, 2020
Trigger Warning: This post contains mentions of self harm, but it’s simply a statement that it happened and there are no descriptions, graphic or otherwise. If this could upset or trigger you, please don’t read any further. Please always put your mental health and emotional state first.
I feel like it’s been a while since I posted a mental health update. And while most of my recent posts have mentioned mental health, I haven’t really felt able to write anything mental health centred. I’ve tried but it’s been really hard. Since the pandemic hit the UK and we went into lockdown, my mental health has basically been a black hole of anxiety and depression that I can only occasionally distract myself from. So it’s been hard to write about it, to write anything beyond “my depression is overwhelming and my anxiety is off the charts.” And there’s only so many times you can say that before it just makes things worse. So I’ve been focussing on things that might be helpful in lockdown, music things, and the day to day approach that I’ve been taking to things. The blog itself has been a method of managing my mental health. But now I’m going back to my Masters (my first classes – all online – are tomorrow) and I wanted to try and describe where my mental health is before I take on that new challenge. I guess it’s something to measure myself against, to see whether I’m coping or whether I’m struggling even more, because I really don’t know how these next few months are gonna go. So here we are, this is the state of my mental health at the beginning of my third semester of my Masters in September 2020…
My anxiety has been – and still can be – paralysing. Early in lockdown, it was a constant, debilitating state but it has evolved since then. It’s easy to get sucked in but day to day, I seem to be able to manage it with a combination of flexible tasks to distract but not restrict me and large amounts of Diazepam. I’m not sure how I’m going to manage going back to university classes with deadlines and uncertainties but as I’ve previously said, I need to try. I will reevaluate if my anxiety starts to become unmanageable again.
My depression has almost become background noise at this point, just a deep, dragging feeling at the back of my mind. I’ve had days where everything just felt so overwhelming and insurmountable that all I could do was stare at the TV and breathe but most of the time, my anxiety has just taken up too much of my attention to really feel it. This still seems to be the case: my anxiety is just too demanding to allow it much space in my brain.
My OCD, which manifests as a compulsion to write down everything that happens to me, has been easier to manage in lockdown with not much going on. I was majorly behind when lockdown began and, because this period of time is so unknown, I wanted to document it in real time so I started a new notebook with the plan to catch up with the old one as time passed. Unfortunately I still haven’t managed that and with multiple stressful things happening in the last few weeks, I’m behind in my current one so I’m going into a new academic year already trying to juggle that. My attempts to balance my OCD and my anxieties around Masters work was a really challenge last year and it looks like it’s going to be just as bad, if not worse, this year. So that’s really not fun and causing me a lot of anxiety already.
My Trichotillomania really spiked in the first few months of lockdown when I was so anxious that I could barely do anything. I’m currently writing a post about the triggers of hair pulling (not to be confused with the causes) and three big ones were really present here: stress, not having something to occupy my hands, and feeling out of control. So I was pulling a lot – to a painful level – back in March, April, May. But as I’ve slowly been able to distract myself and get things done, I’ve been pulling less – significantly less. It never completely goes away but I’ll take whatever I can get.
I’ve had multiple autistic meltdowns since lockdown began. Living with such a high level of anxiety, it doesn’t take much for something to trigger a meltdown. I’ve had about twenty (which I’m pretty sure is more than the whole of last year but I don’t have last year’s tracker in front of me); most of them have been ‘normal’ for the meltdowns I have but a couple of them have been significantly worse, taking days to recover from. They’re really, really horrible and I feel awful afterwards, mentally, emotionally, and physically.
While there have been periods of time where I’ve self harmed consistently, it’s more often than not a one off occurrence with big gaps of time in between. I’ve always considered it a coping mechanism for very specific emotional scenarios rather than a habit or addiction. Given how much I’ve struggled emotionally during lockdown, I’m kind of shocked that I’ve only done it once but then, with my Mum around all the time, maybe it’s not all that surprising: I know that it upsets her and that only makes me feel worse so I have suppressed it in the past. But there was one occasion where I just couldn’t. So it could’ve been a lot worse.
I’ve missed a lot of therapy sessions over the last few months. If I’m honest, I’m finding it really hard to know how to approach them. Obviously, the biggest thing is the pandemic and my pandemic anxiety but we can only talk about that so many times before running out of things to say and yet, I feel so mentally fragile at the moment that tackling any of my other issues feels like just too much, like the process of digging into something difficult might disrupt my delicate, carefully maintained ability to function. So I’m not really sure what to do. I’ve just started having regular sessions again so I guess we’ll see how it goes.
Am I ready for this next semester? I have absolutely no idea. I really don’t know how I’m going to manage it with my mental health as it is but as I’ve said, I need to try. The only thing worse than trying and failing would be not trying at all. Maybe that’s a naive approach to things, considering my mental health problems, but that’s how I feel. I can only hope that, if there are any warning signs that things are getting worse, I can see them and make the appropriate response.
Category: anxiety, autism, covid-19 pandemic, depression, emotions, medication, meltdowns, mental health, ocd, self harm, therapy, trichotillomania, university, writing Tagged: anxiety, anxiety disorder, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, autistic meltdowns, dbt, depression, dialectical behaviour therapy, diary, diary writing, diazepam, hair pulling, lockdown, lockdown 2020, masters degree, masters degree year two, masters part time, medication, meltdown, meltdowns, mental health, mental health in lockdown, mental health update, obsessive compulsive disorder, ocd, online therapy, pandemic, pandemic 2020, pandemic anxiety, part time masters student, part time student, remote therapy, self harm, self injury, therapy, trichotillomania, trigger, trigger warning, university
Posted on September 20, 2020
Given how stressful I was finding the pandemic and the lockdown, I thought it might be helpful to keep a list of what I’d done (achieved, managed, spent time on – whichever word is most appropriate), whether it took a huge amount of effort or was simply something I’d wanted to do, just to remind myself that I was still doing things, that I was still capable of being productive during such a difficult time. Some of them are silly, some of them important, and some of them are just interesting. And I thought posting it would be a good record of sorts when it comes to looking back at this time.
I don’t consider us to be out of lockdown by posting this. It’s just that now I’m starting a new year at university – the second of my Masters Degree – so my life is going to change. I’m doing all of my classes online, rather than going in for half of the classes as is the current norm at uni; I’d be commuting and the risks still feel too high for just two hours a week. So in terms of leaving the house, not much is changing. But it’s a moment of transition in my life and so it seemed like a natural stopping point for this post. I may continue it as a series, depending on how things play out going forward but for now, this is what I did while in lockdown, from 13th March to 20th September 2020…
Films: Hot Fuzz, The Martian, Miss Congeniality, etc.
TV Shows: Episodes, Lucifer, and Nikita, etc.
This is something I did a lot of as a teenager but reverted to during my Masters as a form of stress relief: escaping into another world, a familiar and safe world. My most impressive achievements were reading all of the Ros Myers (Spooks) Fanfiction I could find and reading The Changeling and it’s three sequels (a Harry Potter alternate universe where Ginny is sorted into Slytherin, which totals nearly 600,000 words). Of course, there were more one off stories; these are just my greatest hits.
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I doubt I’ll ever be able to look back on this time positively (from a personal perspective – in the wider sense, it’s clearly been catastrophic) but there have been moments and experiences that I am grateful to have had. As I’ve said, I don’t consider lockdown to be over so this post may become a series but with my Masters to focus on, I will have significantly less time to dedicate to bigger projects like organising my photos or sorting through my possessions. So lockdown continues; I’m just entering the next chapter.
Category: animals, anxiety, autism, covid-19 pandemic, favourites, medication, meltdowns, mental health, music, therapy, university, video, writing Tagged: absentia, activism, agents of shield, anxiety, anxiety disorder, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, autistic meltdowns, back to life, back to life music video, baking, blogging, cat, cfs, chronic fatigue syndrome, clarity, clarity remix, clarity remix music video, concert, cowriting, daisy johnson, debut ep, decluttering, depression, diary, diary writing, digital decluttering, disability pride, disability pride brighton, disabled student allowance, dsa, ep, family, fanfiction, films, friends, guitar, hamilton, home recording, honest, honest ep, interview, lockdown, lockdown 2020, masters, masters degree, masters degree in songwriting, masters part time, meltdown, meltdowns, mental health, mental health in lockdown, mental illness, meteor shower, movies, music, music theory, netflix party, obsessive compulsive disorder, ocd, online concert, pandemic, pandemic 2020, pandemic anxiety, part time masters student, part time student, photo albums, piano, recording, remote writing session, research, research study, singersongwriter, songwriter, songwriting, sounds like hope, sounds like hope music video, student, taylor swift, therapy, tv show, uk lockdown, university, 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 the first three songs are available on all major platforms.