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.

Reducing and Coming Off Pregabalin

Months and months ago, I had an appointment with my psychiatrist and we reviewed the medications I was taking and how I was faring mentally. There was a lot to discuss but we spent a significant amount of time talking about how affected my life is by the sleepiness I experience, as well as the high levels of anxiety I’d been experiencing despite taking the Pregabalin. The result of this conversation was the decision to reduce and eventually stop taking the Pregabalin as it didn’t seem to be helping.

The reduction ended up being pretty uneven, without any particular structure. That was mainly due to the decision to take my time and take less as I felt able to; I didn’t make any alterations during my assessment period at university, for example, as I figured I had enough to cope with. But there were also periods when I was so preoccupied that I simply forgot that I was in the process of reducing it and only lowered the dose when I remembered. Fortunately it wasn’t as traumatic a transition as some of them have been.


150mg —> 100mg

Dropping from 150mg to 100mg, I noticed fairly quickly that my levels of anxiety were going down. At the very least, I had fewer periods of the paralysing, suffocating anxiety that short-circuit my brain, killing my ability to do anything at all. I also started to have more periods of general okay-ness. I wouldn’t quite describe my mood as good, but it definitely moving in a more positive direction than it had for a long time.

I was experiencing specific anxiety around the spread of Covid-19 but I figured that was normal for most people, especially those who already suffer from higher levels of anxiety or anxiety disorders. My as-needed prescription for Diazepam was helpful when it came to managing that, as well as taking precautionary measures.


100mg —> 50mg

I immediately suffered from side effects after this change. I had almost migraine level headaches that I could only manage by lying in bed in my darkened room. They remained at that intensity for several days before fading to a dull throbbing that painkillers took care of for the most part. I also had trouble keeping food in my system; I don’t think I need to go into any further detail on that.

I didn’t feel any different once the side effects passed but after a while, my Mum commented that I seemed less sleepy. I wasn’t convinced but kept an open mind and eventually I did think that I wasn’t feeling quite as drowsy. Part of that was down to the fact that I was drinking less Red Bull than I had been. That seemed to prove that I was needing less caffeine to function and was therefore feeling less sleepy.


50mg —> 0g

Again, I felt the side effects straight away. I had the same headaches although fewer of them and my digestive system also struggled. But with this reduction, I was also nauseous on and off for days and constantly shaky. It was very unpleasant and still hasn’t faded completely, even though I’ve been Pregabalin free for a couple of weeks. But maybe that’s been underneath the Pregabalin all along. I don’t know.

Aside from the side effects, my ability to sleep well disappeared overnight. I can’t be sure that it’s connected but it did start happening around the same time so I think it’s important to include here. I either wasn’t sleeping or having vivid nightmares that left me feeling disturbed and unsettled throughout the next day. I’ve read that this has been a common complaint during the pandemic so I’m thinking that it’s more to do with that than the Pregabalin however, it did start just as I finally stopped taking said medication. It seems unlikely that there’s no link at all.


Now, a few weeks later, I think it’s safe to assume that I’m no longer being affected by the Pregabalin or any withdrawal symptoms. Having said that I am still pretty sleepy and drinking at least one can of Red Bull a day, usually two. I still feel pretty weak and shaky, especially if I have to stand up or exert myself for more than about fifteen minutes. I’m also still sleeping badly with nightmares almost every night. It’s pretty gruelling.

I’m continuing to review the medication situation with my psychiatrist – although it is more difficult while we can’t have face to face appointments – and there are multiple options to think about. I haven’t decided what to do yet. We’re also continuing to investigate physical causes for my fatigue, although that has been put on hold by the lockdown. The restrictions are loosening but I’m not sure what that means for this situation. So, for now, all I can do is research and hope to make the right decisions when the time comes.

Living in Lockdown

When I’m not spiralling into an anxiety-induced meltdown over the pandemic, the resulting quarantine, and (particularly) the thought of a loved one getting sick, I can look at living in lockdown in a somewhat detached, practical sense (something that has taken over a month to be able to do). Intellectually speaking, we’re living in unprecedented times, experiencing something that our parents are experiencing with us for the first time – something that very rarely occurs. There are very few people alive who have witnessed the last pandemic of this scale: the Spanish Influenza in 1918. So this is a big deal, one that will be written about in history books and studied in the future – from political, sociological, and psychological points of view to name just a few. I’ve been thinking about that a lot recently and I can’t help thinking how often history is told from the point of view of the powerful and how terribly, appallingly wrong that is, especially given the number of mistakes being made by the people in power during this period (I’m speaking from the UK but I think we’re all aware of the mistakes being made by other governments, especially that of the US). So, if we want that to change, we have to write it ourselves, write our own experiences of living in lockdown, both for the history books but also for our own sake, so that we don’t forget what this experience has been like and how our lives have been changed by it. And as true as it is that we’re all in the same position – all in lockdown with limited access to our families and friends, the world outside, and our ‘normal lives’ – each of us will be experiencing this differently so I think the more experiences written about the better. So here I am, writing about mine, both for the reasons I’ve already listed but also to keep from drowning in it all, in the anxiety and the fear and the attempt to keep going as if this isn’t a traumatic experience.

I was aware of the Coronavirus before it even moved out of China but it felt like such a horror movie scenario and caused me such anxiety that I worked really hard not to think about it too much. It seemed unlikely that it would get all the way to the UK so I focussed on the anxieties in front of me and got on with my life. Besides, surely the government would be prepared should it reach us, given how much warning they had. I didn’t vote for this government nor do I trust them but I assumed that their egocentric motivations would have them preparing the country as best they could, for themselves if not for their people.

But then the virus started to move from country to country and more and more people in the UK began to take the idea that it might reach us seriously. I battled with my anxiety around it, trying to act responsibly without thinking so hard about it that it sent me into anxiety induced meltdowns. To an extent, I felt fairly unafraid of getting the virus as a young, physically healthy person but having said that, I was very aware that I was in regular contact with immunocompromised people and I was terrified of getting it and passing it on to them. So I was careful to wash my hands, use hand sanitiser, and avoid busy areas and travel times where possible. My anxiety had already been high before the virus made the news so it was a daily battle, as it often is.

Then everything seemed to happen at once. One day I was making plans with a friend for later in the week and the next she was on a plane back to her home country because of the travel ban. I didn’t even get to say a proper goodbye (that’s my little bit of self-pity done because I know, without a doubt, that she made the right choice and I absolutely support her decision). Before that week of classes began, our course came together (electronically) and decided that we didn’t feel it was safe for us or others if we were travelling to and from uni, etc, so suddenly my weekly routine was gone, my education disrupted, and my friends were all going home, again without any of us actually getting to say goodbye to each other. I know we can all talk via social media and video calls and that this isn’t forever but depending how long this goes on, we may never come together as a course again and that is an idea I find really difficult to get my head around emotionally.

I think it was the next week that we went into official lockdown. My university pulled out all the stops to support us and within days, our classes had been moved online but prerecorded lectures and a forum aren’t the easiest ways to have discussions and a sudden lack of access to the library and facilities wasn’t an easy adjustment. I found the online classes difficult. Don’t get me wrong – I really appreciate how hard they worked to keep our education up to date and as normal as possible – but it’s not the way I learn best. It’s just a personal thing. It also made working on the assessment essay much more challenging. Fortunately, I had a tutor who was incredibly supportive and with his help (and my Mum’s), I managed to get it in with good time, despite the added stress and the impact that had.

The essay, despite the anxiety it caused me, was actually a good distraction. As soon as it was done and submitted, I really started to feel the effects of being in lockdown. After all, up until then, I was pretty much doing what I would’ve been doing anyway: spending all my time on my assignment. But with that done, it all started to sink in.

The most obvious struggle is that I miss and worry about my family. I have four parents, only one of which I’m living with, and the others are all on their own; my brother is living by himself in London; my Mum’s Mum is also living by herself, a significant distance from any of us, even if we were allowed to visit each other (I’m thinking more in the case of an emergency where we would obviously keep our distance from each other and be very careful); and I have multiple family members categorised as vulnerable. So I have a lot of people to worry about and worry about them I do. The constant anxiety is exhausting. And as grateful as I am for video calls, it’s just not the same. I miss BEING with them. I desperately miss HUGGING them. I try not to dwell on it – or stress about how much longer we’ll be separated – because that is only more damaging to my mental health but it’s hard. It’s really hard.

On a similar note, I also really miss my friends. We have video calls, regular calls, texting, social media, movie dates on platforms like Netflix Party, and so on but again, it’s not the same. It’s not the same as hanging out with them, or hugging them, or going on coffee dates, or having writing sessions. As I’ve already said, I’m trying not to think about how long it could be before I see them again. We’ll manage, thanks to the technology we have,  but it will be really wonderful to see them again.

The other thing that I’m really struggling with right now is my mental health.  For those of you who know me or have followed this blog for a while, you’ll know that, amongst other things, I struggle daily with anxiety and depression. These are the particular problems that have only gotten worse since the appearance of Covid-19 and the lockdown.

  • Anxiety is my constant companion, although fortunately I have my ’emergency’ medication (to be taken as needed) for when it gets really bad, like I-can’t-breathe bad. My anxiety rises to that level at some point most days and the medication has kept it about as manageable as I think I’m going to get in the current circumstances. But my anxiety isn’t constantly that overwhelming (at least not anymore) and I’m wary of going through the medication too fast so most of the time, I’m just left with this relentless pulsing under my skin that leaves me restless and unable to think as clearly as usual.
  • My depression has been really bad too. Some days are a complete write off from the beginning, where all I can do is stare at the TV. Most of the time though, my mood is better but more precarious. I feel like I’m walking a tightrope: one little knock and I’m going to plunge straight into the darkness. It feels like I have to constantly watch my step, be hyper aware of any possible threat to my mental health, otherwise I’ll fall and who knows how long it would take to build myself back up again, given the uncertain, scary times we’re living in. Maintaining my mental health in this period is like trying to build a house of cards of shifting sands. It’s practically impossible.
  • Since the lockdown started, I’ve had serious difficulty concentrating. On anything. Getting my university assignment done took more force of will than I knew I had and while I knew that I’d need some recovery time after that and after finishing an intense semester, weeks later my ability to focus hasn’t returned. I’ve had phases where I’ve struggled to focus (likely caused by my fluctuating mental health and trying different medications) but it’s never been this bad. I can’t read a book, I can’t watch anything, I can’t do anything without my concentration drifting. Everything takes ten times longer to finish and ten times as much energy, if not more.
  • Most distressingly for me is that my creative brain is completely dead. Out of power. It just feels empty and I have no ideas. I’ve suffered extended periods of writer’s block before and usually experience it to a degree along with the exhaustion of finishing a difficult semester and stressful assessment period but it’s scary to feel that it’s still not working, even after several weeks have passed. I’ve tried all my strategies for writing and all my strategies for writer’s block but nothing is working. It feels like my brain is broken and that’s really, really upsetting.

I’ve still been having therapy, but via Zoom instead of in person. In theory, it shouldn’t be that different but somehow it is. I’d never really considered how important it is to have a space to work through all the hard stuff and then be able to walk away from it, which you just can’t do when you’re having therapy in your living room. Plus, Zoom calls are exhausting – here’s a good article about that – which only adds to how exhausting therapy can be. Then, when it comes to the content of a session, it all feels a bit frozen: it’s hard to tackle difficult emotions when we’re in the middle of different difficult emotions. And when I’m just about coping, feeling so fragile, I don’t want to trigger something and make life even more emotionally difficult for myself than it is already. So the whole thing is really tricky and confusing. Having sessions is definitely better than not having them but it’s not straightforward. It’s not as easy as I thought it would be when we made the plan just before lockdown.

And just to add to that, I’ve been struggling with sleepiness as a side effect of my medication for months but that’s gotten a lot worse since self isolating (perhaps from the increased anxiety – I don’t know). I’m exhausted by the smallest things and I seem to need so much more sleep. And that hasn’t been helped by a sudden, intense bout of hay fever, which has bestowed upon me the additional symptoms of an itchy, blocked nose and sore, itchy eyes. It’s been so bad that even having the windows open makes it dramatically worse so going outside definitely hasn’t been an option (I can’t take antihistamines because of my other medication). So I can’t even go in the garden, making me feel all the more trapped. Inhaling steam helps but only for short periods of time. The recent rain has been a blessing, giving me several days of relief. I’m cautiously hopeful that it’s started to settle – I’ve managed a couple of trips into the garden without incident – but I don’t want to speak too soon.

And lastly, for now at least, I’m really struggling with how uncertain everything is, uncertainty having always been something that causes me anxiety. We don’t know when the lockdown will end, we don’t know when we’ll be safe again, we don’t know when we’re going to see our friends and family again. I don’t know what’s going to happen in terms of my university course. And so on and so on and so on. So on top of the ongoing fear, there’s nothing solid to hold onto. Many of my summer plans have become impossible or at least difficult, while some have been cancelled outright, which has obviously been very upsetting and left me without anything to look forward to or anchor me. I feel very lost. I’m sure that’s true for a lot of people at the moment. I try to focus on each day as it comes but it’s hard. We’re all so used to looking and planning ahead.

One more thing… I found this on Twitter the other day and wanted to share it:

I found it really helpful to have various explanations as to why I’m struggling, to know that my brain isn’t actually broken. Of course, knowing this stuff doesn’t actually fix the problems but being able to take a breath and reassure myself that there is a reason and that it won’t last forever has been helpful.

I hope you’re all safe and coping the best you can. And if you’re in the UK and they do loosen the lockdown this coming week, please continue to be careful. I hate being in lockdown but I’m absolutely terrified of what will happen if the government relax the rules, of how many more people will get sick and die. I’m scared out of my mind that someone I love will catch it. I can only speak for myself but I’m sure I’m not the only one with such fears. So please, please be careful. For all of us.