Posted on July 12, 2025
After my last visit to the Autism Dogs farm in mid February – my anxiety had prevented me from being able to do Daisy’s public access and family training and they accommodated me wonderfully with a new co-created plan that we hoped would work better – it was about three weeks before Daisy was delivered. One of the trainers brought her down and stayed for two days – this is called Delivery and is usually the last part of the process but isn’t for me due to the accommodations they’ve made for me around the public access and family training – while we all got settled and guided us through the basics of having an Autism Dog in your home: we already have a dog and have had a Labrador specifically in the past but, having spent a long time at the farm and being trained by the Autism Dog trainers, it wasn’t the same as bringing a new, young dog into your home. There are habits that we’re going to have to work on, some we need to encourage and some we need to discourage. But I’m getting ahead of myself…
NIGHT BEFORE
I was incredibly nervous about Daisy arriving; I was trying my best not to spiral into a full blown panic but it was a struggle. A big part of it was just that horrible irony of being autistic and hating change and how, when you try to make a change that’s hopefully going to help you, it’s so hard to imagine that it really is going to to help because the change itself is so distressing and so difficult. It feels like, ‘how can this be helpful?!’ And even though I know that that is a big part of it but that doesn’t just turn off that feeling.
I had so many anxieties about Daisy moving in permanently: that she’d chase the cats, that she and Izzy wouldn’t be able to get on, that the change would be too overwhelming, and so on… I was so anxious that I would just be so overwhelmed that I wouldn’t be able to do what I needed to do to enable Daisy to do what she was supposed to do, to support me like she was supposed to; even if she wasn’t fully qualified yet, she was still well practiced in many of her skills. I just couldn’t help fearing that the whole thing was going to be a messy disaster that didn’t work the way it was supposed to and that Daisy would be taken away when I was already so attached to her. I had all of these worst case scenarios in my head that I wouldn’t be able to negate until Daisy was actually there; if she arrived and didn’t chase the cats, then that anxiety would be solved but I couldn’t know that until she was there and so the anxiety just felt never-ending and suffocating.
I had just thought that I would feel more confident by this point. I also thought I’d be in a lot less pain but I’m actually in more pain than when we began this process, which obviously isn’t idea when working with and looking after a dog – and Daisy is a lot stronger and more solid than Izzy (who barely weighs three kilograms). I didn’t want to let Daisy down by not doing enough but moving is so painful that I am really limited. It really felt like being stuck between a rock and a hard place: I stick to my limits and don’t get to do as much with Daisy as feels important to do or I push past my limits to do everything with Daisy and end up in even worse pain. So there’s that but the last few months have been so stressful and all of that was just filling up my brain until it was so overloaded that there wasn’t the space to process any of it or look at it from a different angle or even just breathe. I was trying so hard not to spiral into all of this anxiety because if I did, I would’ve been completely non-functional and I really couldn’t afford to be non-functional with Daisy arriving the next morning.
We’ve had multiple people share their experience with us through the Autism Dogs community and most of them have said that it’s taken time to find a rhythm and a routine that words for the whole household but nobody said it was a complete disaster, which is reassuring. But I was still a ball of anxiety all evening and I doubted that I was going to be able to get much sleep, given my history of sleep problems – especially when my anxiety is high. But I tried. I needed some rest before the two days began.
DAY ONE
It was a difficult day. As predicted, I slept badly so it was a struggle to be up and ready for 11am when Daisy and the trainer, Julia, were due to arrive. So I was anxious and exhausted, which wasn’t ideal. And I was very overstimulated when Daisy and Julia arrived: Izzy was barking her head off at another dog daring to encroach on her territory and Daisy was barking back, although a lot more quietly and gently. Her barks felt more along the lines of ‘What did I do? Why are you barking at me?’ So it was pretty chaotic to begin with but once we’d settled in the kitchen, the two of them started to settle down too, although Izzy was still very bewildered by everything that was going on.
Once everybody was nice and calm, we gave Daisy a tour of the house and Julia checked everything out, just to be sure that everything was safe for Daisy. We’re pretty pet-proofed because of Izzy and the cats but another pair of eyes couldn’t hurt, especially from someone who is very familiar with the routines of the dogs on the Autism Dogs farm. For example, there aren’t any stairs there so going up the stairs (and later down again) was a new experience for Daisy. It’s also true that Daisy is a lot bigger and stronger than all of the other animals – probably combined – so she can knock things over and so on; there are different risks; Julia wasn’t worried though and had some great tips for keeping things secure and out of reach and so on.
That was it officially for the day; the rest of the day was just about playing and bonding and just letting everyone get used to Daisy’s sudden arrival (and Daisy to her new environment). Julia had given her a good, long walk so she wasn’t going to need much more exercise; it was really all about the bonding. So Julia left and it was just me, Mum, and the animals. The cats had vanished, deeply unimpressed by the arrival of a big black dog (that was too excitable and did not have enough control over her limbs and her body in general – she quickly earned the nickname ‘Horse’ for the way she barrels around the house) and Izzy was very unsure, sticking very close to me. The chaos and the noise and the anxiety had pushed me into completely sensory and emotional overwhelm and I just cried and cried until I fell asleep on the sofa.
I was better for the sleep and me, Mum, and the two dogs had a relatively chilled afternoon. I made sure to spend time with Izzy so that she didn’t feel like she’d suddenly been abandoned but I also managed to have some good bonding time with Daisy. She seems to think that she’s the same size as Izzy and that she can fit in my lap, which she cannot, not without either sublaxing my hips or making my legs go to sleep. I don’t really get a choice in the matter though: if she wants to sit on me, she will sit on me. It is very sweet, if not the most comfortable way to cuddle. It was hard though because, when she was wandering around – exploring her new environment and sniffing everything – I just couldn’t concentrate on anything but her, just in case she got herself into trouble. I mean, we’ve had animals safely in this space for years but I couldn’t help feeling anxious that, because she’s a bigger dog, she’d find something to get into that the other animals were never able to; she’s definitely much more likely to knock something over without even realising that that’s what she’s doing. I just could not relax, constantly on watch. I’d cried three or four times, mostly from emotional or sensory overwhelm, and I was frustrated by how little I’d managed to get done, having spent so much time just watching the dogs and making sure that they weren’t getting into any shenanigans. Daisy seemed so discombobulated by her new environment and by all of the new things that were going on that she was barely listening when we – me or Mum – gave her an instruction, even as something as simple as recall or getting off the furniture. It was very frustrating and it just increased my anxiety about how to be a good pet owner to all of the animals, how to be a good handler to Daisy, how to do all of that at the same time. All of that on top of it being a bad pain day (making it hard to do much with her given that I could barely move and that she’s relatively unaware of her own strength), it just took up every grain of energy I had.
All in all, it was a complicated, overwhelming day. I wouldn’t call it a bad day and there were definitely good moments but it was very difficult and an emotional rollercoaster and I was exhausted by the time I went to bed at 11pm – much earlier than I’m usually in bed. I got the dogs sorted, both of them curled up on my bed, and got myself sorted before joining them, not that there was much space for me. But Daisy didn’t stay long: we had a cuddle and then she hopped off and climbed into her bed, still close by. Izzy burrowed closer to me, always game for snuggling as we go to sleep.
DAY TWO
I slept like I’d pulled a week of all-nighters and struggled up, holding up the schedule for the day because I just couldn’t get ready – couldn’t move – any faster. I was already exhausted but I was determined to get through the day so that Daisy could be officially moved in.
Julia, the Autism Dogs trainer, was already there when I got downstairs, enjoying some snuggles from Izzy who she’d completely fallen in love with. Once I was ready to go, I practiced getting Daisy into her harness and her working lead and then we all headed to the park. Because of my pain, we practiced from a bench with Daisy on the long lead. I threw balls for her and we practiced recall and practiced walking on the working lead. She was really, really good and that gave me a bit more confidence after Daisy’s lack of focus the night before.
After about an hour, we headed back home, Daisy having been beautifully behaved (although she did get herself and the long lead wrapped around tree several times). I was tired but we didn’t have much left to do so I pushed through so that we could get everything done and signed off. We ran through each of Daisy’s basic commands and practiced them a few times, including her deep pressure therapy. Izzy gets quite jealous when Daisy does it, when she drapes herself over my lap, but Julia isn’t worried. She’s confident that they’ll find their own rhythm over time: day two was not the day to be worrying about whether they’d ever get along. I know that logically but it does make me anxious because I love Izzy so much but then I also so badly want it all to work with Daisy; all of that is just constantly in the back of my mind.
Confident that we were feeling good about things, Julia left us to it. She’d be back sometime in the next couple of months to do the two days of public access and family training that would make Daisy an official, fully qualified Autism Assistance Dog.
After bidding Julia goodbye, the four of us had a very relaxed afternoon and evening. Daisy and I had some good cuddles and Izzy eventually broached the space she’d been giving Daisy so that she was getting some attention too. Watching them together is already so funny; Izzy can get overwhelmed and overprotective – of me in particular, but also of her toys and her favourite spaces, etc – but while they were both sleepy and cuddly, it was very sweet. Daisy was beyond excited for dinner, as always, which only got Izzy more hyped up and then me, Mum, and both dogs spent the evening chilling with a movie. Daisy was a bit restless: she didn’t have her own bed at the farm – all of the dogs shared beds and sofas and soft spaces – so she wasn’t used to it. She kept getting in and out of it and turning around, like she couldn’t figure how to get comfortable in it (it took her a few days but she worked it out).
We were all exhausted and went to bed early again. And that was the end of day two.
So that’s that: Daisy is moved in. From there, we had a couple of months to bond and build routines and let relationships and boundaries form until Julia came back to do the public access and family training with us.

Category: animals, anxiety, autism, autism dog, chronic fatigue, chronic pain, emotions, exercise, family, heds, meltdowns, mental health, sleep Tagged: actuallyautistic, anxiety, anxiety disorder, asd, autism, autism assistance dog, autism assistance dog in training, autism assistance dog training, autism dog, autism dogs, autism dogs cic, autism spectrum disorder, autistic, autistic adult, black labrador, cats, chronic fatigue, chronic pain, family of cats, heds, hypermobile ehlers danlos syndrome, labrador, overwhelm, pomchi, sleep problems
Posted on May 14, 2023
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.

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.

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.

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.

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.
Category: adhd, anxiety, autism, chronic fatigue, chronic pain, depression, emotions, exercise, family, food, heds, hydrotherapy, identity, medication, mental health, music, self harm, sleep, special interests, suicide, therapy, treatment, trichotillomania Tagged: anxiety, appetite, asd, autism, autism spectrum disorder, autistic, autistic adult, bfrb, body focused repetitive behaviour, chronic fatigue, chronic pain, concentration, depression, dermotillomania, drowsiness, dry mouth, fatigue, hair pulling, hydrotherapy, illness, insomnia, jet lag, lack of appetite, loss of appetite, medication, medication review, mental illness, migraines, music, nashville, overwhelm, pain, phenelzine, self harm, self injury, side effect, side effects, singer, singersongwriter, skin picking, sleep, sleep problems, social anxiety, socialising, songwriting, stress, suicidal thoughts, therapy, travel, travel anxiety, trichotillomania
Posted on February 19, 2022
When I started taking medication for my ADHD, my sleep cycle went to hell and, after a couple of months, I was almost nocturnal, going to sleep between four and six am and struggling up in the afternoon. None of my usual strategies – listening to audiobooks or films, writing stories in my head, different bedding, and so on – were working; even the sleeping pills that I’ve taken on and off when my sleep has gotten bad in the past haven’t helped. After months of struggling, my GP prescribed Temazepam to hopefully help reorientate my sleep schedule.
As always with posts about medication, this is just my experience and I am not a doctor, nor do I have any medical training. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
Temazepam is a benzodiazepine most commonly used to treat sleep problems like insomnia. It usually starts to work within half an hour and the effects are supposed to last for approximately eight hours. It can become addictive so it’s not recommended that a person take Temazepam for longer than a month. As with many medications, it does have side effects, the most common being drowsiness during the day, lightheadedness, and dry mouth. Often the side effects will dissipate as a person’s body adjusts to the medication. (x)
I was prescribed two weeks worth of Temazepam and although I was initially hopeful, I was quickly disappointed. Of the fourteen times I took the pills, I think I managed to get to sleep within two hours less than five times. Apart from those few occasions, I was still struggling to sleep, awake for most of the night, and sleeping into the afternoon, as hard as I tried to force myself up at a more reasonable time. Alarms didn’t work, daylight was painful, and I slept through next door’s drilling; my Mum couldn’t even shake me awake.
I kept taking it, just in case it needed time, but it didn’t get any better. So I went back to my GP to make a new plan – the Temazepam had an expiration date anyway – and she prescribed Melatonin, which my psychiatrist is very supportive of. As it turns out, it’s not unusual for autistic individuals to take Melatonin for sleep issues.
At this point, I’ve been taking Melatonin for two weeks now, first at 2mg and then at 1mg, and it’s a definite improvement over the Temazepam. I’m finally getting some real sleep again, which is great, but I don’t like that I’m feeling drowsy in the day again. So I’m not sure what the long term plan is going to be but I am really grateful to be sleeping again and not being awake all night long.
Category: adhd, medication, sleep, treatment Tagged: benzodiazepine, drowsiness, drowsy, insomnia, medication, medication review, melatonin, side effects, sleep, sleep cycle, sleep medication, sleep problems, sleep schedule, temazepam

Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.
Finding Hope