Increasing The Phenelzine (June – July 2023)

TW: Mentions of depression and suicidal thoughts.

NOTE: I wrote this a few months ago but waited to post it. There were a couple of things that I felt I wanted to comment on in the conclusion but I needed a little bit longer before I felt confident enough to do so. So I let things play out a bit but then some life stuff happened and this post got away from me for a bit. But here we are. Here it is.

Things had improved since I’d settled on the daily 30mg of Phenelzine but it still didn’t feel like enough. I wasn’t crushingly depressed but there were still problems, still areas of my life that weren’t back to what they used to be. So, for a while, I’d been thinking about increasing the Phenelzine, upping it to the high dose of 45mg (with my psychiatrist’s permission, of course). I had tried it before and it wasn’t the right thing for me – it was like the lights were too bright all of the time – but I hadn’t been coming from as low a place as I was this time; I hadn’t been trying to pull myself out of such a bad place. So, with that in mind, I wondered whether the higher dose would help, whether it would give me the additional rungs on the ladder that it seemed I still needed.

So I saw my psychiatrist and while he was quick to comment on how much of a change he could see since I’d started on the Phenelzine again, he listened to what I had to say and we discussed trying the higher dose. He asked me what the most important thing to me was and I said that I wanted my songwriting ability back. I’d written a couple of songs since I started taking the Phenelzine again and I loved them but they’d taken so much time and effort to write, much more than it would usually take. I used to write multiple songs a week with ease but, on the 30mg of Phenelzine, it was taking me months to drag one song out of my brain. So I wanted to write like I used to again. He listened and ultimately agreed: he said we’d use my creativity as a benchmark, using how many songs I was writing as a measure of whether the increase was helping or not (alongside whether I had any negative side effects, of course).

For a while, life was overwhelmingly busy and chaotic and there were things I needed to be able to do, that I needed to rely on my body and my behaviour (as much as I could normally, at least) to manage. So it was a while before I was able to increase from 30mg per day to 45mg per day. I started the increase on 17th June 2023 and took notes for the first six weeks (since the side effects and general effects can be quite subtle), finishing this record on 29th July.

And, as always when talking about medication, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.


WEEK 1 (15mg in the morning and 30mg at night)

For most of the week, I didn’t feel any different. I have been more keen to engage with stuff, especially new stuff, but that’s not new exactly; it might’ve increased a bit but I couldn’t be sure. I was consistently tired and, on more than one occasion, I fell asleep before I could take my medication at night; I was also really drowsy during the day, needing naps to function, to make it to a decent bedtime. My back pain was relentless too, although my TENS machine did help.

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Come the end of the week, my sleep was a mess and I was completely exhausted. I ended up needing multiple naps during the day and still barely making it to a respectable bedtime, forgetting my pills again. But I was managing to do a lot: I worked through my to-do list, went out to see some cool art, managed to avoid a meltdown when a creepy guy wouldn’t leave me alone, and spent my short evening snuggling with the neighbour’s puppies. But even though I hadn’t really had the time to sit down and do any writing, my brain was like a firework show, ideas appearing one after another at a dizzying speed. It was more than a bit overwhelming. I didn’t manage to find out, exhausted as I was, whether I could turn those ideas into anything but it was a definite start.

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WEEK 2

The beginning of the week was so hot (the result of a hideous but thankfully short heatwave) that it felt almost impossible to do anything; moving around just made me even hotter, sickeningly so (heat like that makes my POTS symptoms go haywire, which just makes everything harder). For the most part, I dozed, cuddled up with one of the puppies. I was easily overstimulated and exhausted but I made it home to Brighton (with an impromptu nap on the train) and had a quiet evening before going to bed, falling asleep before I could take my pills or turn the light off.

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The rest of the week was a really mix. I slept better, longer and deeper – and I actually remembered to turn off the lights and take all of my pills before falling asleep – but I was so tired; I kept falling asleep on the sofa or in the car or really anywhere I sat down. I was just so exhausted. I struggled during the day, unable to concentrate even though it felt like my brain was full of ideas and things I wanted to do. But I just felt like I was being sucked down by sleep and staying awake took so much effort. It made me feel like I might start crying at any moment.

I had some really bad days, where I felt overwhelmed and overstimulated and miserable and just so tired that I couldn’t do anything, which, on top of it all, left me feeling so frustrated. I had a horrible time in therapy and was just feeling really fragile. Plus, I was really stressed about the puppy situation: I want her so badly and I have no idea what’s going on; the idea of losing her from my life makes my heart ache.

But despite all of the difficulties, I was surprisingly productive, and was busier than I’ve been in years. At least that’s what it felt like. I started to work on some of the song ideas that I’ve been turning over in my head; I hung out with friends; I managed to swim; I went to see the fantastic Candi Carpenter play a show in London (I’d missed their last UK shows because I was self-isolating) and then we all went to the pub afterwards and had a great time (highlights include all of us singing Taylor Swift karaoke and running into uni friends I haven’t seen in years); I even did a drawing class. It was all really good but it was just A LOT. It was hard to process it all.


WEEK 3

For the first half of the week, things were okay. My sleep was pretty good: I was sleeping long and deep, although I did have the weird, busy dreams that I’ve come to associate with a medication change. I was still incredibly tired during the day (I fell asleep upright on the sofa several times) but I did manage to get some stuff done. And even though my back was hurting, I did manage some hydrotherapy.

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Mentally, I wasn’t doing super well. I just felt really overwhelmed, drained and fragile. It felt like my depression was just hanging around, deep down, all the time. I was still functional and I even managed to do quite a bit of songwriting, more than I’d done in a while, but it was hard. I went to an amazing Maren Morris concert with my friend, Richard, and although I had an amazing time at the show, everything leading up to it and then the aftermath was a really struggle: getting there was exhausting and painful; the disability accommodations were as stressful as always; I was exhausted and freezing by the end of the gig; and it took forever to get home. I had a slow start the next morning, exhausted and aching after the concert, and despite the decent night’s sleep, I was a mess: I was completely overwhelmed and ended up in tears multiple times.

The second half of the week was really difficult. My sleep was a mess, making me a zombie during the day, and my emotions were all right at the surface, raw and ragged. I was beyond stressed and overwhelmed by everything that was coming up over the coming weeks; it felt like it was all barrelling towards me at an unstoppable speed. Both my body and my emotions felt so heavy and I was constantly bursting into tears.


WEEK 4

This week was pretty much dominated by my overwhelming, paralysing anxiety and stress over trying to get Taylor Swift tickets and the hurt and devastation of being treated so badly as a disabled person. I wrote about that here so I won’t rehash it all but I wanted to include what a devastating effect the experience had on my emotional and mental states. While the experience is, of course, separate from whatever the Phenelzine was doing, both are tied up with my emotional regulation and the effect my feelings have on me. As I said in my post, I was basically in various states of meltdown for all three days of the tickets presale. And it wasn’t just the suffocating anxiety of not getting a ticket: the way that Wembley Stadium treated disabled fans was appalling and it was just such a gut-punch to realise that they either didn’t care about us or they didn’t even remember that we exist. It was really distressing. I was so stressed and so depressed, even after I managed to get tickets. Just the thought of not getting to see this show, having looked forward to it for five years, had my emotions so big and loud and devastating that I felt this overwhelming compulsion to scream until my throat tore, to rip my skin off. With so little bringing me joy these days (and my chronic suicidality ever present and oppressive as a dark cloud), the thought occurred to me that, rather than endure the excruciating pain I know I would feel if the shows happened and I couldn’t be there, I should just kill myself to avoid it all. That thought just made me feel even more fucked up than I usually do. My emotions are so big and so precarious that even the smallest thing can tip me into serious and scary lows and this isn’t the smallest thing, given how much Taylor means to me. As I said in my post about the experience, these feelings are due to my mental health, to my depression and my chronic suicidal thoughts, not specifically to seeing Taylor; it’s about the fear of losing one of the few sources of joy when you’re in a really dark place. Those things will be different for everyone but the fear of losing them is so overwhelming that words don’t really do it justice.

The exhaustion and residual stress from that whole… experience had completely drained me of energy and, for several days, I was so tired that I could barely function (although I’d get sudden jolts of adrenaline, thinking I should still be on the phone, that I’d fucked up and forgotten, and was losing my chance). My sleep had been screwed up by my anxiety and I had pain from the physical tension I’d been holding in my body for three long days; both of those took most of the week to settle back to normal, normal being exhausted and sleepy and not able to do much. That was causing me a lot of anxiety too: I had so many things that needed doing but I was just too tired to do them and the anxiety over how they were piling up was starting to get overwhelming. I did manage to spend some time with friends, which was really nice, but I struggled to feel connected while still feeling so emotionally drained.


WEEK 5

The last week had exhausted me and it showed over the following weeks in various different ways. I was going to bed early, sleeping long and deep, and often struggling to wake up. And even with a long night under my belt, I was tired and drowsy during the day, often falling asleep on the sofa (and sometimes at my laptop); I struggled to concentrate, my eyes were tired and straining by the end of a day, and sentences stopped making sense. I was just completely done in. I hadn’t emotionally recovered either. I felt utterly overwhelmed, fragile and miserable; I was suicidal in the face of what just felt like too much. It wasn’t particularly surprising when I had an awful meltdown.

I did manage to be vaguely productive though, despite it all. I worked hard at my hydro and physio; I went to therapy; I managed some writing; I saw a couple of friends and had a good time with them, even if I didn’t feel as present as I usually would; I went to a show a friend runs (and the whole thing made me very emotional); I attended an interesting webinar about ADHD. But, even with how much I was struggling to be  present in my mind, nothing felt quite enough, like I hadn’t done enough or gotten as far as I’d wanted to. I’ve been trying not to beat myself up but I’ve never been very good at that, being kind to myself that is.


WEEK 6

Another week and my sleep still wasn’t great. I was still falling asleep early (sometimes forgetting to turn the light off or put in my retainer) and sleeping long hours, although I was starting to wake up at a more reasonable time. I was still really tired during the day, taking some accidental naps, and struggling to focus. It was getting better but, as I said, it wasn’t great.

I was working hard to build in better habits too, alongside the medication and therapy. I worked hard at hydrotherapy and started physiotherapy too. The physio was a bit of a shock to my system and I was sore for the first few days (which disrupted my sleep but then pain always does). But, midweek, I ran for a train and actually caught it, despite thinking that there was no way I was fast enough or strong enough to make it (I would’ve had to wait an hour on a cold platform for the next one so I was certainly motivated). There’s no way that, a year ago, I could’ve managed that; I was so ridiculously proud of myself. So the hydrotherapy has definitely made a difference and I feel confident that the physiotherapy will only complement that.

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I was also trying to drink more water. I definitely don’t drink enough and, given that the Autonomic Dysfunction I struggle with as part of my Ehlers Danlos leaves me prone to chronic dehydration, I should be drinking a lot more than the average person. I’m nowhere near that yet but I’m already drinking more than I was when I first measured my liquid intake.

It’s hard to know for sure but I felt like I was more productive and motivated than I had been previously. I was actually getting things done and getting them done at a faster pace: blog writing, songwriting, researching. I even went to an online writing workshop that I really, really enjoyed: the session was fun, the people were really nice, and I was really excited about what I wrote. My brain was just desperate for new things and new information; it was excited to learn. I don’t really know how to explain it any other way. I also went out and spent time with friends, went to a songwriters’ circle, and saw family friends. I was more social than I’d been in ages but I was kind of feeding on that, which is really unusual for me. But it was nice. And exciting. Oh, and I also started mentoring sessions for my creative projects, which I felt really optimistic about.

Unfortunately, the week didn’t end as well as it had begun, my depression hitting me like a tidal wave at full strength. It was so overwhelming that I felt like I couldn’t breathe, couldn’t do anything. I was also really stressing about food and eating, feeling guilty as soon as I ate anything. I was miserable and exhausted and couldn’t focus on anything; I slept on and off during the day, dizzy and ears ringing. One side of my body was tingling too and we were this close to calling the doctor. It was horrible. I also found that I physically couldn’t relax: my body felt tensed up even though I wasn’t tensing my muscles (so I obviously couldn’t relax them if I wasn’t actually causing the problem). After several hours, my muscles started to hurt but I still couldn’t unclench them. My legs were twitching too and when I thought about it, I realised that that wasn’t new, that it had been happening on and off for weeks, as had the tensing in certain muscles. The more I thought about that, the more stressed out I got. I know that certain doses and/or extended use of certain medications, including Phenelzine can cause Tardive Dyskinesia, a movement disorder with symptoms including sudden and irregular movements in your face and body. It’s something that gets worse over time and the idea of developing it was really distressing to me.


In the following weeks, my sleep evened out, helped by CBD gummies and the occasional Diazepam or Zolpidem. I spoke to my psychiatrist about the twitching and whether it could be Tardive Dyskinesia. He felt that it was unlikely, that a much more likely cause was the physiotherapy, which I’d started around the same time the twitching started; he thought it was more likely that it was just my muscles waking up with the exertion I was putting them through for the first time in so long. So my anxiety was abated.

But now, several months later, the twitching is still happening and my anxiety is growing again. I’m going to go and see my psychiatrist and have a proper conversation about it because if it is something – something that needs to be dealt with rather than something that’ll just resolve in time – I need to know so that, at the very least, I can think about the options, whatever they are. It’s hard to believe they’ll be anything but bad though; past experience doesn’t exactly fill me with confidence.

Hello, Phenelzine, My Old Friend (Well…)

TW: Discussions of depression, suicidal thoughts, self harm, dermatillomania, trichotillomania, negative thoughts about food, and mention of a school shooting.

So, after months and months of resisting, I’ve started taking Phenelzine again. I was deeply reluctant for a number of reasons; after all, just deciding to take it again (and it didn’t really feel like my choice but one imposed on me by external forces) was an excruciating process and took a lot of therapy, a lot of talking, and a lot of misery.

I really didn’t want to take it. I knew that I would objectively feel better but I also felt like it would change a lot of really important things about how I felt about the world and about myself and that scared me. There were also things that I knew it wouldn’t change so there seemed little point in trying to feel better. So my feelings about it were a mess and sorting through them felt like an impossible task. But I wanted to go to Nashville and Phenelzine felt like the only way that that was going to be even remotely possible (which I still believe to be true, having now done that trip to Nashville). Ultimately it felt like a choice between two miserable outcomes and a choice I didn’t know how to make. And even though I did take it – and am feeling objectively better – I still feel angry about it, about feeling like I had to take it.

For the sake of clarity, I started taking Phenelzine on 10th March 2023 and this post covers the first two months approximately, documenting the side effects and the benefits. I thought about cutting it in half, given how long it became, but ultimately, I think it’s more useful to keep all of this information in the same place. And, as always when talking about medication, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.


WEEK 1 (15mg once a day)

Nothing changed in that first week. I was desperately depressed (most days I was too depressed to get out of bed) and consistently, deeply suicidal; I just felt completely hopeless. I self harmed that first week, driven largely by my complicated feeling about taking Phenelzine again.

I had no energy and was physically exhausted but somehow still made myself get up and go to both my hydrotherapy and therapy sessions (I think that that, more than anything, was a lack of will to fight what I was being told to do), although they did, of course, make me even more tired. I had no appetite but I didn’t have any interest in food anyway. I would’ve ignored it altogether but my Mum pushed me to eat something everyday; even that was a struggle though.

The plan was always to increase to twice a day after a week or so but given that I wasn’t feeling any change and time was running out (plus the very important factor that I’ve taken this medication multiple times before and so I have a lot of experience with it), when I asked my psychiatrist if I could move to the higher dose slightly earlier than planned, he agreed. So I started taking 15mg twice a day after only five days.

WEEK 2 (15mg twice a day)

Physically, I felt pretty awful. My sleep continued to be erratic and terrible; I had pretty much every form of bad sleep that you can have. I was constantly exhausted during the day and so drowsy that I struggled to do anything; there were days where I managed to get out of bed only to lie on the sofa.

At the beginning of the week, I was still feeling deeply suicidal. I felt overwhelmed and hopeless and was deliberately self sabotaging: I was desperately avoiding food wherever possible (and then constantly feeling like I wasn’t trying hard enough); continuing to isolate myself; pushing myself too hard in hydrotherapy; and so on. Over the course of the week, the nature of the suicidal thoughts and feelings changed a bit. At first, I wasn’t sure if I was still suicidal but then, when I thought about it for more than thirty seconds, I realised that I was: the fears that ultimately drive my suicidal thoughts and feelings were still there and still really, really big, leaving me so completely overwhelmed that living felt unbearable. I was also incredibly anxious (if I had to put a number on it, I’d say I was consistently in the top 5% of my – very wide – spectrum of anxiety). I was practically living on Diazepam (not a good idea, I know, but I was just trying to survive) and even with the help of that, I was suffering from significant physical symptoms, something that isn’t usually part of the anxiety experience for me: I was nauseous; I consistently felt like I couldn’t breathe and deep breaths felt physically impossible, like the air wasn’t going into my lungs but elsewhere somehow; I also had periods where I felt frighteningly short of breath; my throat felt so tight that swallowing felt like it took ten times the usual amount of effort, like I had to concentrate all of my energy just to get food down; I cried a lot, something I hadn’t done much of during what I’ve been describing as ‘my depression coma.’ The looming Nashville trip was a particularly intense source of anxiety; just thinking about it made me want to curl up so tightly that every bone broke or scream until I disappeared from existence. These sound like poetic ways of saying I was anxious but they are literal descriptions for the deeply visceral emotions I was trying to cope with.

I could most definitely feel the Phenelzine starting to work though: I managed to write some bits of songs on a few occasions, which was more than I’d been able to do for a long time up to that point; I started engaging with social media again, although it was in a limited capacity and I really struggled with it; I went back to bullet journalling and to do lists, having abandoned those months earlier; and so on. Having said that, all of those things also increased my anxiety about life and about bad things happening, making my suicidal thoughts even worse. Alongside those literal examples, I also felt like my brain was moving faster, having felt so sluggish for so long, but that didn’t necessarily mean that that activity was… desirable. My thoughts weren’t more organised, weren’t making me more productive. Everything was moving so fast that it often made me feel sick; my thoughts were chaotic, making them hard to keep track of and making it even harder to concentrate than it already was. It was exhausting. But I felt like the lights were slowly starting to come back on. It wasn’t bad exactly but it was more than a bit unsettling because I hadn’t really realised that the lights had gone off – figuratively speaking – despite how bad things were.

I wasn’t sure if I was experiencing any physical side effects, especially since I was already struggling with exhaustion, drowsiness, depression, and anxiety. But there were a few things that could’ve been side effects: a few moments of nausea so overwhelming that I had to lie down until they passed; I also kept finding that my mouth was really dry, that I was drinking a lot more than usual, but it wasn’t consistent enough to be sure it was a side effect. The first time I took Phenelzine, I struggled with something akin to manic episodes and although I didn’t experience that this time, there were definitely moments where some of those recognisable feelings and behaviours arose; one of those was talking compulsively, unable to shut up as hard as I tried. It was frustrating but it was at least familiar and so I knew it would pass; I just had to wait it out.

WEEK 3 (15mg twice a day)

The last few days before Nashville were brutal on both my brain and my body. I was unbearably anxious: I felt completely overwhelmed, to the point where I couldn’t concentrate on anything; I felt like I could barely breathe or swallow; I was near tears for days. I tried really hard in therapy, ending up in tears, but I still felt like the anxiety was tearing me apart. I think that was part of the reason my chronic pain flared up again, from my neck down to my hips, and the pain was constant, regardless of any medication I took. It was awful. Other than that, I continued having moments of intense nausea, sleeping erratically (and feeling deeply tired during the day), and feeling generally unwell. I was also desperately frustrated by what, at that point, was most certainly the side effect of a consistently dry mouth; I was so thirsty, I went from barely drinking anything to the equivalent of multiple bottles of water in a day.

During those few days though, I had a conversation with a close friend, one of the few I’d managed to stay in vaguely regular contact with (for the previous few months at least). We were talking about music and I found myself enthusing about it, to a point that took me by complete surprise. It was disconcerting to feel that passionate about anything after so long without feeling anything like that, anything that strong. The sudden emergence of this feeling really threw me: my identity suddenly felt incredibly unstable and I didn’t know who the real me was, the depressed person who was wrapped in layers of cotton wool misery or the person on Phenelzine who loves music more than anything. It was scary and confusing and made me feel very unsure of myself, of everything.

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Halfway through that week, I flew out to Nashville, the trip my main motivation for going back to Phenelzine. The flight was about as straightforward as they can be and my first few days there were pretty quiet, physically at least. It gave me some time to recover, which was both much needed and much appreciated; I was exhausted and the jet lag was really rough. The chronic pain was ongoing and I struggled against a migraine-like headache. The dry mouth was persisting and I was drinking water like it was going out of style. My anxiety was at an all time high. Between the flight, arriving in Nashville, anticipating the ten (ish) days ahead, thinking about all of the things that could potentially go wrong… I was so anxious that I honestly felt like I was going to be sick. It was excruciating.

It also feels important to mention that it was in those first few days in Nashville that The Covenant School shooting occurred. I wrote more about this and my feelings about it in my Nashville post and it doesn’t feel like this is a suitable post to rehash those emotions but it was very distressing and I found myself hit with a sudden flood of feeling hopeless and upset and even more anxious.

WEEK 4 (15mg twice a day)

That week in Nashville was A LOT, on so many levels.

I never really got over the jet lag so I struggled with fatigue and exhaustion throughout the whole trip. I started out at tired and within a few days, I’d reached exhausted and I fought against that constant physical exhaustion from then on (until long after I got home). I tried to be strategic – avoiding and minimising the walking and standing where I could – but there was still more time on my feet, especially in queues than I could really handle (but we’ll come back to that). Because of the jet lag, I slept erratically at best and terribly at worst and I was so tired that there were multiple occasions where I just crashed on the sofa and slept for several hours during the day. By the end of the trip, I was struggling not to fall asleep in public places.

The walking around, queuing for shows, and the hours spent in uncomfortable chairs was an absolute nightmare on my body, leaving me stiff and sore for the whole trip. My chronic pain hadn’t been great before we left but this was a whole new level of pain, from my neck to the soles of my feet (but particularly my back and legs). I could barely move by the time I got into bed each night, my muscles screaming, and I spent a lot of time stretching out my back and warming the muscles with my portable electric blanket, trying to ease the pain a bit but my back was wrecked by the end of the trip. I was also hit by one of the excruciating, spasming pain attacks in my back that had me unable to move and screaming until it passed. I don’t experience them as often as I used to but they’re horrendous when they do happen. So, pain wise, it was a pretty miserable experience.

In regards to Phenelzine side effects, there was still only the one that I was sure of: I was still constantly thirsty. All I had to do was breathe through my mouth for ten seconds or so before my mouth was so dry that I could barely breathe, my breath catching in my throat. I was drinking so much water, bottles and bottles a day and I could’ve happily drunk more.

My anxiety was, for the most part, terrible, especially at the beginning. I was so anxious – there were times that I honestly felt like it was going to make me sick – and there was just so much uncertainty, plans constantly changing and unfooting me; it was almost impossible to feel settled (a feeling that I always have in Nashville). There were days where it wasn’t quite as bad though: the good managed to balance it out, I got settled in various ways that helped me cope better, and then there were times where I was just so overwhelmed that I couldn’t tell what I was feeling, whether I was feeling anything at all. With so much to feel, sometimes my mind just seemed to go blank, like a defence mechanism, like feeling it all would just be too much.

That’s not to say that there weren’t good moments and good feelings. I spent time with lovely people, went to amazing shows, caught up with old friends and made new ones… It was good, if a lot to process: it was more than I’d been doing for months crammed into a single week. I mean, I had my first ‘glowy’ moment – a moment where I feel like I’m glowing with pure joy – in longer than I can remember, which was very special; they’ve been hard fought for over the last eighteen months. I was giddy for the rest of the night. I also went to a party despite a tornado warning (the first of some potentially questionable decisions, but I hung out with lovely people and had a good time) so it may be that I was more impulsive than usual, something I’ve noticed before when starting Phenelzine (on both occasions); it’s kind of fun but also feels like my world is tilting back and forth wildly. I did enjoy myself but there were also moments where I felt like those feelings weren’t really landing, maybe because they felt so weird and disconcerting after being so deeply depressed for so long.

Emotionally, I was completely all of the place. As I said, it was just so much to process. And by the end of the trip, I was a complete mess. In some ways, I was desperate to go home but I was also really reluctant, both to leave and to return to normal life. I was confused and conflicted and anxious, which I can’t imagine was made clearer by the pain, exhaustion, and mess of feelings that the early stages of Phenelzine creates.

WEEK 5 (15mg twice a day)

The flight home was okay and I managed to sleep for most of it, although it wasn’t particularly restful. And sleeping with my legs bent the way I did meant that when I woke up and I tried to walk, the pain my knees was awful; it made me extra grateful for the Meet and Assist. I felt okay for a while but then the jet lag crept in and, no matter how hard I tried, I could not stay awake. I ended up sleeping on and off all day; I was just so tired and sleepy and overwhelmed by everything.

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Getting back to normal was hard. The jet lag was just as brutal travelling this way and I was completely exhausted; I kept falling asleep during the day, which only made my sleep schedule worse and it wasn’t great to start with. I made myself go to therapy and hydrotherapy, both of which were good to do in their own right given the previous ten days but also helped to physically tire me out. The pain in my back was almost unbearable, making it impossible to do much (although, arguably, taking the time to rest wasn’t the worst thing I could’ve been doing). And I was still so, so thirsty.

After two weeks of chaotic busyness, I suddenly didn’t have anywhere to be or much to do and that left me feeling weirdly untethered and lost and anxious (although it was probably good for my physical recovery to have that quiet time). With Nashville over after thinking about it for so long, I felt low and depressed and empty; it was a combination, I think, of the adrenaline and what I call the ‘Nashville effect’ (I always find myself feeling lighter and more open and joyful, even with all of the anxiety and mental health stuff – it’s been there on every trip) wearing off and readjusting to normal life and all of the things that I had to engage with and get done. It all felt very hard. Having said that, I did manage a very complicated journey to and from London to spend a lovely evening with friends, which was really nice, if exhausting. But even with the good moments, I was feeling so anxious and depressed with the consistent background noise of suicidal thoughts. With all of that clawing at the inside of my head, I found myself reopening the recent cut on my face and ended up making it worse.

WEEK 6 (15mg twice a day)

I spent most of that week struggling with some kind of virus or something. What started out as a sore throat and a cough turned into sore ears, tender glands, and a painful cheek and jawbone. It was pretty miserable – I felt overwhelmed and sad and kept bursting into tears – but I took a test (and several more throughout the week) and at least it wasn’t COVID. On the worst day, I was suddenly overwhelmed by nausea, breaking out in a hot sweat, and I had to lie down until it passed because my ears rang whenever I stood up. I felt so rough and exhausted by it that I fell asleep and slept for most of the day. After that, I slowly got better although that still involved days of general unwellness.

Sleep was still a struggle, including one night where I only got two hours of sleep. Even when I slept reasonably, I was so tired and sleepy during the day, which made concentrating even harder than it is normally. The pain in my back continued, although the severity of it slowly dropped to a low level ache by the end of the week. The desperate thirst remained too; I was still drinking so much water, which I’m sure is good for me even if the cause is annoying.

By the end of the week, I was starting to do things again – not at a Nashville level or even a pre-depression coma level – but more so than I had felt able to over the previous eighteen months. I saw family, hung out with friends, worked on music projects, exhausted myself in therapy, and pushed myself hard at hydrotherapy, upping the intensity; my legs cramped and shook but it felt good, like I’d done something really productive. I’d found hydro getting easier over the previous couple of weeks and I wondered if it was the Phenelzine, whether it was somehow allowing me to feel stronger in my body and able to push it harder. It wouldn’t surprise me but it isn’t something I’ve felt when taking Phenelzine before.

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An added complication was the cut on my face. Having opened it up at the end of the previous week, I suddenly couldn’t leave it alone, tearing at it with my fingernails and making it worse and worse; every time it started to heal, I opened it up again. As hard as I tried, I couldn’t stop, couldn’t rid myself of that anxious energy. After several days, I managed to divert it but I only ended up doing a different kind of damage, chewing away the callouses on my fingers from playing guitar; I was almost down to the next layer of skin, which really hurt. The urge to tear at my face, to chew my fingertips, to pull my hair was just relentless and however I tried to repress or redirect it, it remained just as strong and trying to resist it just felt like it took more energy than I had (I mean, it’s always felt like that but it felt like it had gotten worse). I’ve struggled with the urge to pull my hair or to self harm for years but for some reason unknown to me, it had suddenly gotten much worse and much more damaging. It could’ve been Phenelzine related (my hair pulling started around the time I first started taking Phenelzine, given the timing, but I don’t know if there’s a connection – there was a lot going on) but I don’t know.

WEEK 7 (15mg twice a day)

My sleep started to level out: I still had nights where I only got a couple of hours of sleep but I also started to have a few nights where I slept deeply and heavily, which I was grateful for. But despite those better nights, I was still always, always tired and so often sleepy during the day. There were days where I was too tired to do anything and my struggle with concentration only continued. The back pain was still present but at a much lower level than it had been during and immediately post Nashville. And whatever illness I’d had seemed to have passed; all that was left was what felt like a mild cold. The sniffing was boring but perfectly manageable. And the endless thirst was becoming more normal, if still annoying. So even though none of it was wonderful, I guess there were improvements on all fronts.

My anxiety and depression hadn’t been resolved as much as I would’ve hoped, as I remember from previous experiences with Phenelzine (although that could be me remembering it wrong). There was more in my brain than there had been previously: I was having good moments and good emotions, as well as just more emotions in general, so the depression wasn’t so aggressively front and centre anymore but it was still there, still heavy and miserable. I was still having suicidal thoughts pretty consistently too, like uncomfortable static in the background of everything; all of the huge, awful, terrifying things that happen in life just felt completely overwhelming and I don’t want to live through them. That’s really hard to not feel. I felt fragile and overwhelmed a lot of the time. I was just so anxious about all the things I had to do; I felt incapable of concentrating enough for any of them, which just made my procrastinating even worse. I worked hard in therapy, trying to figure out some really hard questions, and I just ended up feeling really overwhelmed by everything; being more engaged with the world, being ‘better,’ just felt really scary.

Having said all of that though, I did manage to do things. I had a very long, very social day; I had a long work meeting on Zoom (which I absolutely would not have been able to do pre-Phenelzine); I hung out with a friend; I worked on music stuff; I pushed myself really hard at hydrotherapy. Plus, I released my new single, ‘House on Fire,’ which was a big deal considering that, during my depression coma, I wasn’t able to engage with music at all. The day went well although it was stressful and exhausting too.

The whole hair pulling, chewing my fingers, tearing at my face situation was not good though. I just couldn’t stop; my face and fingers never allowed to heal. The cut on my face was only getting bigger and typing on my laptop or playing guitar was super painful. It was a mess and I had no idea how to fix it.

WEEK 8 (15mg twice a day)

My sleep wasn’t great but it wasn’t terrible. I had bad nights, broken sleep and waking up exhausted, but I also had decent nights too where I slept long and deep. But, regardless of how I slept, I was tired and sleepy throughout the day, often struggling to concentrate on whatever I was doing; the intensity fluctuated but they were constant. I also found going to bed difficult, so anxious that I procrastinated into the early hours of the morning. This seems to be my new normal, or at least on the spectrum that is my new normal.

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I was having more and more productive days but I was still really struggling with my anxiety. I felt fragile and overwhelmed, anxious about everything that I needed to do and everything that was happening; it made concentrating extra hard and I ended up procrastinating quite a bit, especially with the harder things. All of the hard stuff was persistently on the peripheral too. I worked hard in therapy and hydrotherapy too, exhausting myself; I was getting out of the pool, breathing hard and legs shaking. The chronic pain hadn’t faded entirely but it was down to an almost ignorable level, which was probably the best it had been for a long time.

The damage I was doing to my hair and fingers and face was ongoing, although I discovered that covering the broken skin with plasters or gauze and creating a barrier between them and my fingernails did help, slowing the damage and actually allowing them to heal a bit. That did mean my hair bore the brunt of that panicky energy, which painful for my scalp, shoulder, and elbow. Every time I try to redirect that energy, it just seems to find another destructive form, never one that doesn’t do any damage. It’s a real struggle.


I didn’t intend for this post to get so very long but between Nashville and getting sick, I wasn’t sure if I was accurately representing my experience with Phenelzine. I’m never sure how interesting these posts are to read but I feel like the experiences of taking these medications are important to share, to document. I’ve never seen anyone talk about taking Phenelzine and I’ve had multiple people reach out to me to ask about it; all of the information out there seems to be purely factual. So I wanted to make this first hand account of it available for people to get a sense of it, even if it’s only my experience and only this time, my third time taking it. On the two occasions I’ve taken it previously, I didn’t write about it because, the first time, I didn’t have this blog and, the second time, I was so depressed that I couldn’t write. Long story short, here is my experience of taking Phenelzine (for the third time) and I hope that, for anyone about to take it or already taking it, this account is helpful and informative.

Over two months in and I still don’t feel great about Phenelzine (for all of the reasons that I didn’t want to start taking it originally), as much as I can recognise the objective benefits. And with those benefits in mind, with my anxiety and depression still very present, I think that I need to try a higher dose in order to get the most out of it. It was too much last time but I wasn’t trying to come back from such a bad place so maybe I just need a bit more help this time. I’m waiting to hear from my psychiatrist and then I guess we’ll see.

A Day In My Life (University With Autism Spectrum Disorder)

As opposed to my usual week-in-the-life posts, I thought I’d do something slightly different this time and zoom in on what it’s like to be an autistic student at university (one doing an MA in COVID-19 times anyway). This is obviously just my experience – as the saying goes, ‘if you’ve met one autistic person, you’ve met one autistic person’ – but I thought it might be an interesting post to write. I feel like it’s so important to share our experiences as autistic people, especially when media is being created that can be harmful to us (i.e. everything that’s been going on with Sia’s new film – I feel like I should be writing about that but I still don’t know how to; it makes me so upset that I can’t really write anything that feels articulate enough to represent the significance of the issue). So I hope this is an interesting read.


THE NIGHT BEFORE

Monday was hugely busy, with a production session, two doctors appointments, and working on the essay of the module in the spaces between. I’ve been working on it somewhat steadily but since I have a feedback session coming up, I’ve been a bit more random in my approach to writing it – fitting writing time in wherever I can or just writing about certain things as they occur to me –  so that I can get as much out of that session as possible.

So it was one of those days where I barely had time to think.

On Monday evenings, the Masters course have a song sharing session between 7.30pm and 9.30pm. I’ve been a couple of times but I tend to find it too much. I’m most creative at night and so filling my head with new songs and song analysis right before I try to sleep really messes up my ability to sleep, which I have to try to do relatively early with my first class on a Tuesday at 9am. And if I don’t get enough sleep on a Monday night, I’m useless in every class on the one day I have classes. So, unless there’s a really good reason, I can’t really prioritise them.

I also find them quite hard socially: as much as doing the Masters course part time was the right thing for me, it has meant that for both years, I’ve never quite felt part of the group. There’s a handful of us in the same position and I can’t speak for them but it’s always left me feeling a bit ‘other,’ like I don’t really fit anywhere – not quite part of the group in the first year and even less part of the group in this second year. Everyone on the course is lovely but it does have a pretty big impact on the social side of the course. And when you struggle with feeling like you don’t fit in, it’s hard to feel it in yet another area of your life. So sometimes that factor just makes it too hard on my mental health. Maybe it will feel easier when one of my best friends rejoins the course in January.

So, instead, I used the time to do some more work on my essay before emailing everything required for the feedback session to my tutor (I wanted to make sure he had enough time to go through it all before we met on Wednesday afternoon). Then I tried to unwind a bit. Somehow I still ended up going to bed too late – not that 11pm is hugely late but for me, the night before a class, it’s on the border of being dangerously late.

I have a prescription for sleeping pills because my anti-depressants can cause problems with my sleep but I try to avoid them where I can. Having said that, knowing how exhausting a uni day can be, I usually take one the night before to make sure I’ve had enough sleep to give me the best chance of getting through said long uni day.


THE DAY ITSELF

I wouldn’t say I slept well and I struggled to get up but I’ve had worse nights so I just tried to push through the fatigue. I got dressed and made up and then collapsed on the sofa for a rest. Standing for the time it takes to shower, get dressed, and do my make up makes me feel weak, and lightheaded, and sick – something we’re still investigating with, unfortunately, very little progress – but getting up as early as I had meant that I did have enough time for some recovery time. It’s all down to planning. My life is dependent on planning. I also managed to eat some breakfast and take all of my pills. I’m taking quite a few at the moment – more than the ‘normal’ ones that help me maintain my mental health – because of a Vitamin D deficiency and horrible nerve pain down my left side (I’ve been waiting for a hospital appointment for the latter since about April or May, which may be my personal record for appointment waiting times).

My seminar started at nine (if you’ve read my previous university posts, you’ll remember that I’m doing all of my classes online this semester). My normal tutor (who is legitimately one of the loveliest people I’ve ever met) started the class before handing us over to a guest tutor who gave us a two hour class on arranging strings and horns. He was incredibly knowledgeable and engaging and so it was really interesting. Plus, Tiger came and sat with me for most of it, which was very nice. University with cats is a definite advantage of online lectures.

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I was struggling to concentrate by the end of the class so I was relieved when we wrapped up. It was a lot of knowledge and sensory information to try to process and sort through and digest. I felt more than a bit dazed. Fortunately, the session was recorded so I can either go back and listen to it in shorter sections or go back and search for something specific.

My next class wasn’t until five so I had rather a lot of time to fill. Pre-pandemic, I’d hang out at uni and do cowrites, go to the favourite local coffee shop with friends, or work on whatever was on the list at the time but I’m finding it much harder to use this time effectively, whether that’s due to having my classes online or down to the pandemic just really screwing with my brain. Stuff that wasn’t hard before is now and the only thing I can put it down to is the pandemic, even if I don’t know precisely why. All I know is that it’s a weird time and so it shouldn’t be surprising that certain things aren’t the same as they were before. But it’s still frustrating to have such a big block of time that I could be using productively and not have my brain cooperate. Early in the semester, I ended up staring at my laptop screen, desperately trying to work on stuff and just not being able to. I got more and more frustrated and demoralised and eventually I just had to accept that this is not productive time. So I’ve been trying to come up with ways to fill it that aren’t too demanding but still feel like there’s a point to them; I don’t want to feel like I’ve wasted it by just staring at my phone or mindlessly jumping between the open windows on my laptop because that’s just not good for my general mental health. So I’ve been trying things like reading or watching new movies or TV shows – these have been good sources of inspiration in a time where I’ve struggled to find inspiration – or having a nap if I need one… Things that don’t require a lot of energy but still feel worthwhile (most of the time).

I did a quick scroll through my social medias to see if there was anything that needed replying to and then did some admin work: replying to emails, updating my bullet journal, and so on. Just as I was about to move onto something else, I got a load of notifications from social media, all Taylor Swift announcing her acoustic concert film going up on Disney+, folklore: the long pond studio sessions. That was so exciting that it temporarily scrambled my brain, in both a good and a bad way. As an autistic person, I’m really not a fan of surprise drops because I just get hit by a tidal wave of emotions and I feel so overwhelmed that I actually feel sick. I don’t want to sound ungrateful for the film because I am so, so grateful for all that Taylor has been putting out during the pandemic (her work really has been one of the things that’s helped me during this time) but the suddenness with which she’s been announcing things has been difficult because that doesn’t give me enough time to do the emotional processing that I need to do. So although I eventually settled into being really excited, I spent a lot of the day feeling painfully twisted up and anxious over the mess of emotion I was experiencing.

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That did leave me floundering quite a bit, I have to confess. So, to try and take my mind off of everything I was feeling, my Mum and I caught up with the latest episode of His Dark Materials. It did help a bit. It’s such a great show; the casting, the acting, the sets, the interwoven storylines, etc are all so beautifully done. I loved the first series and I’m really enjoying the second one. I love Dafne Keen as Lyra (I so related to Lyra’s reaction to popcorn – it was freaking hilarious) and Amir Wilson as Will but I think it was Ruth Wilson as Marissa Coulter and Lin-Manuel Miranda as Lee Scoresby who really stole the show this week (pun actually not intended – if you know me, you’ll know I love a good pun). Their big scene together was just so powerful and how Ruth Wilson played the aftermath was particularly emotive.

I spent an hour or so working on a new blog post but after a while, I was just getting slower and slower and eventually I gave up and had a nap. I slept for about two hours before struggling up for my second class at five. I could’ve easily slept longer but I did my best to shake it off and concentrate on the workshop. This is where we (in this case, all of the 100% online students – the rest are blended and do the workshop in person onsite) share the songs we’ve been working on over the week and get feedback from the rest of the group. For most of the semester, we’ve had briefs each week but now we’re just working on whatever’s right for us. So, for example, I didn’t have a song to present because I’ve been working on the feedback for previous songs and the essay, rather than a new song (although I did recently write a rap, although I’m not sure whether I ever want anyone to hear it). Everyone else had songs to play though so I could still participate and give feedback, although I’m not sure how helpful I was because of how tired I was. But I tried. Some days I was just have less energy to work with than others.

I had an hour break before the evening session, which runs from seven to nine; they’re technically extra-curricular but I try to attend them when I can, especially now that they’re online and therefore more accessible. I don’t want to miss out on anything I don’t have to.

During my break, I had a quick dinner and catch up with my parents. The Grammy nominations had also been announced so I went through those. I’m super pleased for Taylor Swift: folklore is such a great album. Six nominations – Album of the Year, Song of the Year, Best Pop Solo Performance, Best Pop Duo/Group Performance, Best Pop Vocal Album, Best Song Written For Visual Media – is incredible and I’m really excited for her. Personally, I think she deserves at least several of those, especially considering the other nominees. I’m absolutely psyched for Ingrid Andress and her three nominations: Best New Artist, Best Country Song, and Best Country Album. I’ve been following her for years, having met her in Nashville at least a couple of years before her album was released. She’s an amazing writer and it would be just so awesome for her to win even one Grammy award this early in her career. But I’m concerned about her chances; she has some serious competition in all of those categories. The Best Country Song category, for example, is incredible, full of so many amazing songwriters that I love so much: Natalie Hemby (‘Bluebird’ by Miranda Lambert and ‘Crowded Table’ by The Highwomen, a group of which she’s a member), Maren Morris (‘The Bones’), and then Ingrid, of course. I want them all to win it. I was disappointed that Halsey still hasn’t been nominated. Manic is such an incredible album, as is Badlands (Live from Webster Hall), and it’s so frustrating that she doesn’t get the industry recognition she deserves. Especially given how popular ‘Without Me’ was, I’m really shocked that she’s never been nominated.

I just made it in time for the late session, which involved two of last years graduates presenting their final projects, one about using songwriting to explore different aspects of personality and the other about the experience of their gender transitioning and how sharing that story has the potential to increase understanding and empathy and break down barriers. They were both really cool projects but it was also massively helpful to see their processes, how they’d developed their ideas and researched them and how that research had lead them to writing the songs they wrote. It was fascinating and I definitely feel more prepared for my own project. I’ve got several ideas I’ve been turning over and the presentations have been helpful in my decision making process too. So I got a lot out of it, even if I was completely exhausted by the time the session finished.

It was about half nine and I probably could’ve gone straight to bed but I went and spent some time with my Mum, watching some TV together as we both wound down from the day. But it wasn’t long before we  were both falling asleep so we put the cats to bed (they sleep in the kitchen so that we’re not woken up at five – the time they start demanding breakfast) and headed to bed ourselves.


THE NEXT MORNING

I’m not one of sleeping in so I always set an alarm. Then I can get up and start doing things (I have a real problem with needing to be productive) but usually, the day after a uni day, I sleep through the alarms I set. It doesn’t seem to change anything though. I keep setting alarms and sleeping through them. But that morning was special. I dragged myself out of bed at eight to watch folklore: the long pond studio sessions, as soon as it was available. It wasn’t particularly enjoyable to get up when I was so exhausted but it was absolutely worth it. The film was amazing, so amazing that I still haven’t figured out how to put all my feelings into words yet.

Since this post is just about my day at uni, I won’t write much more but just as I wrote about the Monday night, I thought I’d write about the Wednesday morning. Usually there isn’t a brand new Taylor Swift film to watch so I try to rest and recover my energy – physical, mental, and emotional – from the day before. As I said, I’m struggling with this need to be productive all of the time so with that in mind, I try to schedule undemanding tasks for Wednesdays. That particular day, I had a couple of half hour tutorials with tutors, so I spent the morning making sure I was ready for those. I’d already made notes of what I want to ask and discuss so I spent the rest of the morning going through those to make sure I felt as prepared as possible.


So, as you can probably tell, it takes a lot of planning and prioritising and rationing of energy to make it possible for me to go (or at the moment, ‘go’) to university, to make it possible to live my life in the most positive and productive (to a healthy extent) way. This isn’t an unusual day for me. While stuff like big Taylor Swift announcements and the Grammy nominations don’t happen every day, there’s often something that can cause emotional reactions like the ones described and I deal with fatigue and anxiety everyday. It’s one big juggling act. Every day. One enormous, exhausting juggling act every day.