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 DSA Process For My Masters Degree

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…

  • If you disagree with part or all of the final assessment, ask to talk to someone else – It’s not something you’re necessarily made aware of when you have the assessment but I was so distressed by the end of the assessment that the assessor told us we could appeal. My second assessment yielded quite different results than the first one so it’s definitely worth asking if you feel that you haven’t been heard or fully supported.
  • Ask what kind of documents act as proof of a need for support – The earlier you find out what paperwork might help your case, the quicker the process will go. We, unfortunately, didn’t know that the PIP documentation was helpful and the whole thing may not have taken so long if we had.
  • Take someone with you as it can be overwhelming and tiring – These assessments can go on for hours and there’s a lot of information to both give and receive. Plus, it can be a pretty emotional experience so having someone with you can make the whole thing easier; you have someone to lean on and two pairs of ears to take everything in.
  • Ask for everything that you would find helpful – You might not get it all but you definitely won’t get it if you don’t ask and hopefully you’ll get some of it. It’s also always worth asking what you’re potentially entitled to because there may be things you aren’t aware of that could be helpful.
  • If you’re told something isn’t possible, ask why – The assessors can’t know every relevant question to ask and you can’t know every relevant piece of information to give so if they tell you something isn’t possible or available, it’s worth asking why because you may have some information or some paperwork that changes the situation and what support you can get.

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.

Getting Back To Gigging

Over the last twelve months, I’ve barely been performing at all. I just haven’t been up to it. My depression has been completely overwhelming and has only been compounded by trying to find a new antidepressant, what with all the side effects: at one of the few gigs I have done, I was getting so dizzy that I couldn’t stand up long enough to play three songs. So it’s been a struggle. But in the last few weeks, I’ve had two gigs – and two gigs that I really wanted to do – and so I’ve had to figure out how to do everything that that involves while still struggling the way I am. It was hard work and the heat didn’t help but I managed to do them and do them reasonably well all things considered.

The first performance was part of Brighton Soup. For those of you who haven’t heard of it, it’s a community event where four people (or organisations) pitch their ideas to improve Brighton and Hove. Everyone votes and the pitch with the most votes gets the money from the ticket sales to make their idea a reality. They invited me to play at their next event and it turned out to be such a special experience. I was so moved by all of the pitches and the general spirit in the room.

I was really anxious about performing – more than I have been in a long time – and my hands were actually shaking. I find that very disconcerting, not being in control of my body. I took a deep breath and tried to imagine it flowing through my body, imagine everything settling. That helped a bit, as did trying to really feel every line of each song as I sang it.

Before this unplanned break from performing, I felt fairly confident on stage and although I did get nervous, it all but disappeared the moment I started singing. It took longer this time but, by the time I finished my four songs, I felt like myself again. I’m not sure I could explain the process – from shaking mess to confident performer – but I could feel it happening and that, in itself, helped with my anxiety.

The second performance was at Disability Pride in Brighton. I got to play last year (despite technical difficulties, it’s still one of my favourite performing experiences) and I was SO excited to get to play again. It’s such a special event.

It turned out to be a pretty challenging gig. The acoustic stage was inside an inflatable structure, which needed a generator to remain inflated. The generator was so loud that I couldn’t hear myself at all. I was reassured by multiple people that it sounded great from the audience’s perspective, but I still really struggled with it. Had this happened a year ago when I was performing fairly regularly, it wouldn’t have bothered me as much because the more you perform, the more it gets into your muscle memory. So, if you’re struggling to hear yourself, you can rely on other parts of your body to judge how the performance is going: how your voice feels in your throat, for example. But during this ‘break’ from performing, that muscle memory has faded and so I was relying heavily on hearing myself. So it wasn’t as easy as it could’ve been. Plus it was stiflingly hot and I’ve always struggled with heat.

But having said all of that, it was one of the most supportive and most generous audiences I’ve ever played for and I felt so, so lucky to be there. I wish I could’ve given them a better performance. My sincerest thanks to everyone who made the event possible; I literally can’t put into words (I’ve been staring at the computer screen for an hour) how much it means to me.

The last few weeks have been a bit of a rollercoaster, but one that I’m really grateful for. I’d sort of forgotten how much I love performing but this has really helped to remind me.