Mass Observation Day 2022

It’s the 12th of May again, which means it’s Mass Observation Day! Every year, the Mass Observation Archive asks people to keep a diary for a day to record the everyday lives of those in the UK. I’ve written diaries for most of my life and I love the idea of pulling together all of these accounts in order to get a picture of an ordinary day in the life, whatever that might look like, for people in the UK. It’s like putting together the pieces of a puzzle. So here is my piece.

Some important things to know before reading: I’m autistic and live with Depression, Generalised Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Personality Disorder. More recently, I was diagnosed with Attention Deficit Hyperactivity Disorder (Inattentive Type), Hypermobile Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome. I’m currently in between things: I finished my Masters Degree in Songwriting and am currently working on my next project for release but, at the same time, I’m trying to get my health (physical and mental) into a more stable place.


It wasn’t (and wasn’t ever going to be) a busy day. I’m halfway through getting off Moclobemide, my most recent antidepressant, so I’m trying to be gentle with myself; I’m trying not to push myself too hard. I’m also trying not to give myself a hard time for not doing more – with varying degrees of success. There’s just a lot going on at the moment, health-wise.

I had a bad start to the day in that I slept really badly, which has been the not so new normal ever since I tried taking medication for my ADHD. Even though I stopped taking them months ago, my sleep still hasn’t recovered fully. Between that, my chronic pain, and the crying baby next door, I didn’t get to sleep for a long time and woke up repeatedly. I didn’t really feel like I’d ever really gone to sleep, to be honest. I woke up around half ten (which is actually pretty good for me at the moment, what with the off kilter sleep schedule) because next door were having their deck worked on and the noise was too much to ignore.

There’s so much pain when I wake up in the morning at the moment. It’s awful. I can’t do anything until painkillers have kicked in and after feeling all of that, I’m generally pretty exhausted. I lay in bed for a while, reading until I felt like I could manage a shower, something that’s especially difficult at the moment as the pain is worst in my arms.

By midday, I was settled in the living room with my laptop. I had a couple of hours before a Zoom session with Richard (one of my best friends, my writing partner, my producer, and more) so I got to work. There were a couple of tracks that I needed to sign off on before they went to be mixed and mastered so I listened to those and did sign off. That done, I worked on a couple of upcoming blog posts until it was time for the Zoom session.

We caught up a bit since it’s been a little while since we last saw each other (although we frequently text each other silly jokes and pictures) and then we got down to business. [While I will be including the details in the version of this that I send in to the Mass Observation Archive, I don’t want to give away the details of new music. I will say that we worked on two tracks that I plan to release soon and discussed another bigger project that will be coming, hopefully, in the not too distant future.] All in all, it was a productive session.

I took a break after that. I put Harrow on (it’s been added to Disney+ so I’ve been rewatching it over the last few days) before having a quick check in with social media and then spending a bit of time reading.

It took a while to reel my focus back in but then I spent a couple of hours working on a couple of different upcoming blog posts. For some reason, my Mental Health Awareness Week blog post has been a struggle right from the start and I still haven’t finished it. I think I’m anxious about getting the balance right, of writing about the loneliness (the theme this year) without sounding ungrateful for the people I do have because I really am so grateful for them. I also just find Mental Health Awareness Week hard, with social media overflowing with vague, trite advice – advice that was vague and trite five years ago. I know it’s Mental HEALTH Awareness Week and not Mental ILLNESS Awareness Week but mental illness is part of mental health and I just feel like this should be a week (and don’t get me started on the fact that so many people and organisations only talk about mental health during this one week of the year) where every part of mental health and mental illness can be talked about, not just the ‘socially acceptable’ parts. But it isn’t. It doesn’t feel safe to do that. Loneliness isn’t a bad theme: loneliness and isolation are real obstacles to staying mentally healthy, to the point where it can be considered trauma. I guess I just feel like Mental Health Awareness Week isn’t enough when you’re trying to stay afloat in the ocean that is mental illness.

I had to stop working on that post after a while. I was just getting too frustrated. And then it wasn’t long before I was interrupted by the announcement of dinner. For those of you who don’t know, I live with my Mum but I have three other parents that I don’t live with. Anyway, one of them came over for dinner – something we do roughly once a week – and we had a good hang out and catch up. Sometimes we watch a movie but since neither she nor I were feeling great, we didn’t this time.

When she left, my Mum and I continued watching Harrow (she loved the show too) and I did another hour or so of work on blog posts – I’ve got a couple that I’ve been pulling together for a long time that I’ll hopefully be able to post soon – before moving over to my diary. Which brings us back to this post.


It wasn’t the most interesting day but I guess that’s kind of the point. It’s a normal day. And this is what normal looks like for me, this week at least. Who knows what next week will look like.

If you keep a diary or want to write down some thoughts about what your 12th May looked like, the website is here, where you can submit your diary entry and learn more about this and their other projects.

A Moment of Modafinil

TW: Mentions of suicidal thoughts. 

In hindsight, I’m not sure this was the best moment to try out a medication that’s supposed to help you stay awake, given that it was going up against jet lag, lack of sleep, exhaustion, and the general sleepiness caused by my antidepressants. But I was desperate to feel something other than drowsy and trying out the Modafinil was the only option to hand. So, for a week, I took it twice daily – per the instructions of my prescription – and I thought I’d describe the experience, just in case it might be useful to somebody.


For most of the week, I took the 8am pill and then went straight back to sleep, only waking up again to take the 12pm pill. I was just so tired; I couldn’t wake up, no matter how hard I tried. I did manage to get up earlier on a couple of the days but regardless I only felt actually awake for a couple of hours before I started feeling sleepy again. I was constantly exhausted and fell asleep, sometimes multiple times in a day, regardless of how hard I tried to stay awake. Red Bull didn’t seem to help much. The first night, I never went to sleep at all – despite how tired I was – but after that it was all I could do to stay awake for more than a couple of hours at a time.

I haven’t had much appetite since taking the ADHD medications but I was suddenly very nauseous again with absolutely no interest in food. I have to say, it’s an improvement on the medications that make my want to eat constantly but it’s still not pleasant.

My mental health took a hit too. I was very anxious but there were multiple external factors to consider so I tried to tough it out but it just kept getting worse. Within a few days, I was feeling incredibly overwhelmed and fragile and then, on top of that, I started to feel more and more depressed. By the end of the week, I was having suicidal thoughts again. I stopped taking them at that point. It said that, if it causes depression (or perhaps made my existing depression worse, I don’t know), to stop and talk to a doctor and maybe I should’ve waited to stop until I could talk to my doctor but it was the long weekend and I just couldn’t face feeling like that any longer. So I stopped taking them and sent my doctor an email about it. I’m hoping for a proper appointment with him soon.


I was only taking them for a week but they didn’t seem to have any positive affect at all; I was still employing extra strategies etc to try and stay awake, something I would’ve hoped I wouldn’t have to do with the Modafinil. Having said that, I was only taking 100mg and I’ve read that most people need to take 200mg to feel the effects but I’m worried that taking a higher dose would make my depression even worse and that’s not something I can be okay with.

For several days after, I was sleeping long nights and most of the day; I was probably sleeping somewhere between sixteen and eighteen hours out of every twenty four. I’ve emerged from that at this point but I’m still incredibly sleepy. The quest for a non-drowsy life continues.

Experimenting With Melatonin

After the Temazepam didn’t make a dent in my insomnia, my GP prescribed melatonin and finally – FINALLY – I started getting some sleep again. And in the nighttime hours. I started out at 2mg but almost straight away, I found it almost impossible to wake up in the morning so we reduced it to 1mg with the blessing of my GP.

As is always the case with posts about medication, supplements, etc, this is just my experience. Please don’t start, change, or stop taking anything without the advice and support of a medical professional. 


WEEK 1

So it definitely helped me get to sleep more quickly. I went from lying awake for hours – for most of the night – to falling asleep in less than an hour. It wasn’t always quick but it was a lot quicker than it had been (part of that could have been due to a flare up of my chronic pain though).

Almost straight away, I was struggling to wake up in the mornings. I would wake up and fall asleep again over and over; I couldn’t seem to stay awake and that meant I wasn’t getting up until late morning or early afternoon. After a couple of days, I went from 2mg to 1mg but it didn’t seem to make any difference. I mean, I appreciated being able to sleep again but suddenly I was sleeping more than twelve hours, which was just problematic in a different way.

Again, almost right away, I was finding myself increasingly sleepy in the day. That was another reason to reduce the dosage but that didn’t seem to make any difference on this either. I was back to drinking Red Bull pretty much every day – not a habit that I want to return to but I was just too tired to come up with an alternate solution and just wanted to make it through the day. My eyes were always tired and I struggled through the day, trying to do things, trying not to fall asleep. And that was with the caffeine (I’m starting to wonder if caffeine has any effect on me at all at this point). It’s hard to know whether it’s the Moclobemide, melatonin, or just the accumulated lack of sleep but I really, really don’t want to spend my whole life feeling tired and sleepy because MAOIs are the only medications that work.

WEEK 2

It was taking me a while to get to sleep – I couldn’t get comfortable (yay, chronic pain); I couldn’t relax; I couldn’t unwind – but it was still so much better than before I started taking the melatonin. I was still getting to sleep a lot quicker than I had been. I do keep going to bed too late, which is a habit that frustrates me, but I’m trying to be better about that.

I was sleeping restlessly, waking up a lot, which wasn’t super restful. Waking up was a struggle: I’d fall asleep, wake up, fall asleep, wake up… I just couldn’t wake up. I couldn’t open my eyes or make my hands work for such a long time; it was horrible. I don’t know if that’s the melatonin or the Moclobemide but, whatever it is, I don’t like it. Getting up took a lot of effort and I usually didn’t manage it until into the afternoon.

During the day, I was physically exhausted but also really sleepy; I couldn’t keep my eyes open (and they were just so tired). I was ready to go back to bed within a couple of hours of getting up. I started consistently drinking Red Bull again, something I haven’t done since I stopped taking the Phenelzine last September. It’s not a habit that I want to start again but I don’t really know what to do: I’m so tired that I can’t figure out what the right thing to do is so I’ve just been going with it to get through the day. But even with the Red Bull, I’m very drowsy and tired.

WEEK 3

While I’m certainly drifting off faster than I was before I started the melatonin, it hasn’t been straightforward. It often took me quite a while to get to sleep, like I had to concentrate in order to sleep (which seems somewhat counterintuitive) but then I was restless and woke up over and over. However, there were also nights when I fell asleep quickly and slept well. So I’m not sure what conclusions to draw from that.

Generally, waking up was unpleasant. I’d wake up, fall asleep, wake up, fall asleep – over and over again. It was very frustrating. I found that eating something straight away did help me stay awake but I hate it: food is absolutely not what I want when I first wake up but it’s the only thing that seems to make waking easier. Over the week, I have noticed that I’m naturally waking up earlier and earlier, which I am grateful for.

I struggled during the day though, physically exhausted and just so sleepy; it was so hard to keep my eyes open. I don’t know if the Red Bull helped at all. Socialising, even when it was enjoyable, was exhausting and I fell asleep on the sofa multiple times. That, of course, just made it harder to get to sleep when evening rolled around.

WEEK 4

Given how much I struggled to wake up and how sleepy I was during the day, I stopped taking the melatonin, an experiment to see if it was the cause of my drowsiness, if I could sleep without it.

My sleep was better than it had been before this experiment with melatonin but it still wasn’t great. It was still taking me a couple of hours to get to sleep but I wasn’t lying awake all night, which was an improvement. Most nights, I slept restlessly and kept finding myself stuck between asleep and awake or with busy, vivid dreams.

I consistently struggled to wake up, although I discovered that eating something straight away did help. Otherwise I just kept drifting back into sleep. Waking and then getting up was just a battle, every single day. I was managing to get up earlier than I have been able to over the last few months but then I was generally sleepy within an hour of settling to whatever I was working on.

I was incredibly sleepy during the day, every day without fail. I was easily fatigued and it didn’t take much to leave me passed out on the sofa for a couple of hours. Everything just seems to take so much energy. The urge to nap was constant and my eyes kept closing; it took all of my energy just to stay awake. Even with a Redbull or two in my system, I was always drowsy. I wish I knew why the sleepiness kicks in during the day only to completely disappear at night; it’s really wearing me down. It seems clear that the MAOIs are at least the main cause of this sleepiness but if they’re the only way forward, then we need to find some way to counteract it. It just isn’t sustainable. I can’t do what I need to do like this.

WEEK 5

Having come to the conclusion that the melatonin wasn’t the cause of my daytime sleepiness, I decided to try another experiment. Given that I still wasn’t sleeping particularly well, I thought I’d try the melatonin again, just to be sure. I started with the 1mg but that didn’t seem to be enough: I’d feel my body, particularly my legs, start going to sleep but then they’d twitch awake, horribly and painfully. That only made it harder to get to sleep, both the physical pain and the fear of it. So, thinking that that dose might not be enough, I returned to the originally prescribed dose of 2mg. It had mixed results. Some nights I slept quickly and well but some nights, I slept terribly, waking over and over and experiencing busy, stressful dreams. It’s better, I guess, than sleeping badly all of the time but it’s not as straightforward as I’d hoped it would be.

The drowsiness – and fatigue – is still a problem. I’ve got some ideas to pursue on that front but there isn’t the time to test any of them out before my trip to Nashville so, until I get back, I’m just going to have to muscle through and hope the adrenaline can plug the gaps. I’m anxious – I don’t want to miss out on anything – but I’ve also been living with this, to some extent, for years now. I’m well practiced at managing my energy, even though I don’t always listen to my experience and instincts.


So I’m not really sure how I feel about the melatonin. After five weeks, I’d hoped I’d know one way or the other whether it was helpful but I’m not sure that I do. It might have broken the sleepless loop I was in but it hasn’t proved to be reliably helpful and on the nights it isn’t helpful, it feels like it makes things worse. So I don’t know. I really don’t.