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.

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.

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.

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.

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.

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.