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

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

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


PRE-LOCKDOWN

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

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

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

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

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

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

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

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

SINCE LOCKDOWN

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

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

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

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

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

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

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

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


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

The Second Semester of My Masters

So, that’s it. I’ve finished the second semester of my Masters Degree. That’s a very weird thought. I kind of can’t believe I made it. But I did. And I wanted to write about it, like I wrote about the first semester because all of this is weird and wonderful and difficult and part of the journey.

This semester, the module I studied was called Musicology (“the scholarly analysis and research-based study of music”) and my classes were split into two different blocks. The first was a series of lectures, each based around a different artist/songwriter and a specific element of their career, like David Bowie and identity, Prince and authenticity, and Max Martin and his use of melodic math (not all of them were men – these are just the ones that are coming to mind as I write this). I’d expected it to be based more around elements affecting music and it’s creation and consumption, like the history of certain genres, feminism, the constant evolution of technology and social media, rather than specific artists but maybe that was a misinterpretation on my part or simply a different approach that could’ve been taken. I don’t know. It was interesting and I learned a lot but a lot of the reading was very academic which I struggled with, given that I’m having  some trouble with what you’d probably call my cognitive processing. Having said that, we had a great tutor who is really passionate about the module, which made it so much more enjoyable and engaging than a lecture heavy module could’ve been.

The group was larger than I was used to but there were a lot of familiar faces, including my two closest friends on the course. That was definitely a positive, both because I love them and because it helped me to adjust to all the changes. But it was also nice to meet some new people and get to know better the ones that I sort of knew and wanted to know better. So that was really nice, even if it took me a while to adjust to the new group dynamic. I’ve made some good friends from that class, even though it was cut short by the lockdown (I’ll get onto that in a bit).

The second block of classes were practical classes where we discussed in further depth the techniques we’d covered in the lecture class (the technical skills and application) and then we’d go away and write a song based on those techniques. Some of the briefs were really inspiring but on the whole, I found the whole exercise frustrating and a bit of a waste of time. We’d just spent a whole semester working on our creative process and tackling our blocks and weak areas and suddenly we had no time to work on them any further because we were focussing on and trying out other people’s techniques. I just feel like I was finally making progress, particularly in my musical ability (I’ve always struggled when it comes to experimenting with different chords and chord progressions), and suddenly that progress was being curbed dramatically, making it really hard to invest myself in the songs I was writing for this class.

The assessment for this module was a single four thousand word essay on anything related to songwriting. Most people choose a songwriter and then focussed on some aspect of their songwriting or the impact of their songwriting in a certain area, like feminism or the genre they were part of, for example. I really didn’t want to go through the overwhelming stress I went through at the end of the last semester due to lack of clarity around the assignments so I spoke to my Module Leader (who was also my tutor and a tutor I’ve known since my BA) really early in the semester so that I could be as prepared as possible and when I presented the potential subjects I had in mind, he gave me some really good advice: choose the one you’ll learn most from. So I decided to investigate Taylor Swift’s use of imagery and how that links to the authenticity in her songwriting, specifically in her song, ‘All Too Well.’ I thought that would benefit my songwriting the most, since those are elements that are important in my writing and therefore knowing more about them could only strengthen my use of them. So, alongside my classes, I slowly started to gather research about those topics.

I was still researching (I readily admit with the help of my Mum because I found myself struggling so much with the academic language and with my cognitive functioning) when the Coronavirus reached the UK. Classes continued but as a course (there aren’t a huge number of us and we have a group chat on WhatsApp where we’re in constant contact with each other) we discussed the situation and came to the collective conclusion  that we didn’t feel safe travelling to and from uni, as well as being in the busy setting of a university. Our representatives contacted the senior staff and not long after, our classes were moved online. I think it was a week or so after that that the lockdown was announced.

Initially, not much changed for me, apart from the fact that I was no longer commuting to London for my classes. I attended the online classes, did my work, and researched for my essay. Determined not to go through a last week of panic writing, I got to writing as soon as I had enough material and added as I learned more. My tutor was fantastic in recommending sources when I got really stuck (there’s not as much research on imagery and authenticity in song lyrics as you’d think) and giving me some excellent feedback when I finished my first draft, still with plenty of time before the deadline. He’s been amazing throughout the whole module and I’m really grateful. I, again with my Mum’s help, went through the feedback and did the best we could to improve and strengthen the essay before submitting it just under a week before the deadline. So no last minute panicking. I think I did the best I could under the circumstances. But it wasn’t a solo effort. They’re my ideas and my words but I would NOT have been able to do it without my Mum’s support, and gentle pushing on the days where it just felt too hard. I couldn’t have gotten through the researching, the writing, or the editing without her. It is a better piece of work because of her help and I’m so incredibly grateful, both for her help on this assignment and throughout this module but also for her in general, for the ways she has supported me otherwise: helped me manage and protect my mental health, organised my life for me when it took all I had just to stumble through the days, for making sure I ate, even and probably especially on days when I didn’t want to. I’m so lucky to have her and I’m aware of that every minute of every day.

It’s been a weird semester. In a lot of ways it was smoother than the first, both because I was getting the hang of my routine as a Masters student but also because my mental health was more stable, if not necessarily better. I had some great, cherished times with my friends but then they were all suddenly ripped away without proper goodbyes by the lockdown (thank god for video calls). I got to do some really fun cowrites, which were then suddenly stalled for the same reason. They can be rearranged and done by FaceTime or Zoom but it’s not the same: I find it much harder to be creative WITH someone when we’re not actually in the same room (plus the lag time makes singing or playing together a real challenge). I’ll make it work because I love cowriting and I love the people I’m writing with but I do find it harder. I was also really enjoying the lectures and discussions we had in class and online classes just aren’t the same. So what was mostly a pretty positive semester was cut off in its prime and I do grieve the way things could’ve been.

I’m done now. The full-timers have another semester but I’m free until the end of September ish. I’ve completed the first year of my Masters Degree. That’s a very strange sentence to write out. There were many, many moments where I was sure I’d have to defer, despite the fact that the thought made me feel physically ill. But I made it. It was somewhat anti-climactic, given that we’re all in lockdown: I uploaded my assignment, clicked a button, and that was it. Year One done. I don’t think I could sum it – or the emotions I’ve experienced – up if I tried, not without writing a PhD length post. It’s been good and difficult and inspiring and more stressful than I could’ve possibly imagined. I’ve learned a lot and I’ve met some wonderful people. I guess I’ll leave it at that.

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