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.

BEHIND THE SONG: Clarity

Today I posted a new video, telling the story behind the inspiration, the writing with Imogen Davies, and the production of my current single, ‘Clarity.’ I’ll let you watch the video but again, it does relate to mental health so I wanted to post it here, as well as on my social media. I haven’t explained the experience that gave me the idea because I don’t want to get in the way of the way someone applies the song to their life or interprets the story. It’s a song about something difficult so I feel weird saying, ‘I hope you like it!’ but I hope, when you listen to it, it means something to you. I hope it makes you feel something.

If you haven’t heard the song yet, you can buy or stream it here and the music video will be out soon.

Happy International Women’s Day!

In honour of the fact that today is International Women’s Day, I would like to honour some of the amazing women in my life. I’ve been very lucky to grow up surrounded by strong, intelligent, compassionate women and I’m very grateful for that. There are so many I could list – I’m incredibly fortunate to be friends and acquainted with so many talented and generous women – but here is a selection:

My parents – I am lucky enough to have four parents, all women and, of course, they deserve the greatest of thanks. They have encouraged me, supported me, and protected me for almost twenty-five years. Each of them inspires me differently and I love them all dearly. My Mum deserves a particular shout out. She has been my champion through all the Autism and mental health stuff; she’s my hero. I don’t know what I’d do without her.

My therapist – I have said it before but I’ll say it again: I’m so, so grateful for my therapist. She is an incredible human being and she’s done some incredible things. She’s saved my life for sure. She’s warm and honest and stubborn and I’m just in awe of her.

My Autism friends – For the first time, I have friends who also have Autism. It took me a long time to figure out what being autistic truly meant to me but last year, I heard about a group for young women with Autism and decided to give it a try. The friends I made there are so special to me. The things that always made us feel different and alone are the things that now connect us to each other and that’s pretty magical. To feel understood is something so easily taken for granted but it’s one of the most important things in the world.

Song Suffragettes – I’ve talked about Song Suffragettes before (here and here) but they’re a fantastic organisation that I’ll keep talking about forever. They showcase the up and coming songwriting talent in Nashville and they consistently push against the sexism in the music industry. So many of my favourite songwriters I’ve discovered through their shows and it was a huge honour to play with them during one of my trips to Nashville.

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Amanda Tapping – Amanda Tapping was my first hero and so will always be special to me. She played Sam Carter in Stargate SG-1 and Helen Magnus in Sanctuary and both of those characters had a really significant impact on me. It took me a while to figure out that I could be like them – I spent most of my teenage years trying to be just like them – without having to be exactly like them. For example, I could pursue the things I love and the things I’m good at with the same intensity and passion and commitment, rather than trying to turn myself into a duplicate of either of those characters. Amanda herself is also a worthy hero: she’s struggled and succeeded throughout her life and she’s dedicated significant time, money, and effort to helping others. For example, she’s run conventions that have raised tens of thousands of pounds for charity and where she makes the dreams of fans like me come true: I was an anxious mess when I finally got to meet her but she was kind and compassionate and wonderful. She’ll be my hero forever.

Chloe Bennet – Chloe Bennet currently plays Daisy Johnson in Agents of Shield, my favourite character in my favourite show. This character is an actual superhero and that, of course, is a cherished connection to my Dad. Watching and following superhero related things has allowed me to feel close to him. I know he would’ve loved Agents of Shield. Daisy massively inspires me but Chloe does too, especially since she’s talked so openly about her mental health. (x)

Taylor Swift – I’ve exalted Taylor Swift multiple times (here, here, and here) so I won’t repeat myself but her kindness and her dedication to helping others and doing the right thing continually inspires me and motivates me to be a better human being. I’m also massively inspired by her artistic drive and her commitment to exploring her own creativity. She’s constantly building on her work and it takes my breath away every time.

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Sara Bareilles – If I know you in real life, then I’ve probably told you (multiple times) about Sara Bareilles dedicating her song ‘Uncharted’ for me at her London show while I stood in the front row (the video is here). It was magical. Her singing and songwriting and piano playing take my breath away and I’m so inspired by the way she makes the music that she wants to make and doesn’t fold to the fickle whims of the music industry. I’m also really inspired by the way she’s pursued multiple different creative projects, like writing a book and writing the music for a musical.

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Maren Morris – I have loved Maren Morris’ music from the moment I heard ‘My Church’ and her concerts are some of my favourite memories. Her songwriting is direct and honest and every song inspires me to get better as a songwriter, a singer, and a human being. Her story shows that there is something magical about being yourself, truly and authentically, and that inspires me every day.

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Claire Wineland – I was and still am so inspired by Claire (I talk about her in way more detail here) and her approach to life and living. I will carry her in my heart forever.

These women are a huge part of why I am who I am and I’m so incredibly grateful to them. As Felix says in Orphan Black, “To my galaxy of women, thank you for the nurture.” Amen.