Posted on December 24, 2025
I really didn’t mean to abandon this blog but the last four months have been completely miserable, healthwise.
Less than a week after I last posted, I started experiencing what felt like electric shocks in my lower back. It was so painful that, at times, all I could do was scream. Even when the electric-shock-like spasms weren’t actively happening, I was in – quite possibly – the worst pain I’ve ever experienced. And given my experience with chronic pain, that’s saying something. It was horrendous, especially as the painkillers that usually give me some relief weren’t having any effect. Eventually I managed to get some stronger painkillers from my GP and they were so strong that, for the first few days, I could barely keep my eyes open: I was asleep for around twenty hours each day. Thankfully, that did wear off after a while but I still felt slow and blurry while taking them.
It was a completely new kind of pain for me and while we had a few theories from the network of health professionals I’ve worked with, we still didn’t know what was causing it, how long it would go on for, or if it was a permanent change. The massage therapist I’ve done some work with – who has both personal and professional experience of Hypermobile Ehlers-Danlos Syndrome and chronic pain – was a godsend and thankfully, my Mum found a new physiotherapist nearby who had professional experience with hEDS and who was able to come to the house to see me. He was fantastic: he was thoughtful and thorough and explained everything with great care (sometimes multiple times); he really listened to me and took my priorities into account when choosing the exercises for me to do; I felt like he actually cared about me as a whole person, which has not been a common experience. He assessed me and felt that I had a pinched nerve in my lumbar spine, which typically heals in about eight to twelve weeks. That felt like an interminably long time but I was relieved to hear that he expected the pain to go away. He gave me some very gentle exercises to do as I felt able to, with the goal of strengthening the muscles in my back to support my especially hypermobile lumbar spine (and hopefully reduce my chronic pain). Between the pills (despite the side effects), the massage, the physiotherapy exercises, and the time that I was forced to take to rest properly, the pain finally started to decrease and I was able to slowly increase my mobility – I’m still working on that.
Unfortunately that was only the first part of the story. In early October, I started to struggle with multiple symptoms that I’ve rarely experienced, including stomach pain, nausea, acid reflux, and difficulty swallowing. It made eating so difficult that I could barely keep any food down and it made sleeping difficult because I felt worse when I was lying down. I felt awful but my Mum had been unwell a week or so earlier and so I assumed that it was the same thing and would pass relatively quickly; I thought I just had to rest and wait it out, like I often do with a seasonal illness or the symptoms of my chronic illnesses. But that didn’t happen. The symptoms got more intense until I wasn’t eating at all – sips of water were all I could manage – and the POTS symptoms I experience everyday had become debilitating. I hate going to the doctor but if there was ever a time, this was it.
I managed to get an appointment with one of the GPs pretty quickly – not my usual GP but that isn’t unusual and I did manage to get an appointment with her for later in the week – but when I explained what was happening, this doctor said that there wasn’t time to explore each of the symptoms so she questioned me about the difficulty swallowing, prescribed me a medication, and sent me on my way. I was deeply unimpressed and had no confidence in her diagnosis or the medication: treating one symptom when several are presenting at the same time… that seemed very unlikely to help whatever was causing the multiple symptoms. I’m passionate about the NHS (and about improving it) but it’s not exactly straightforward when I’ve been repeatedly invalidated and mistreated by medical professionals.
I didn’t have time to even take the medication before the stomach pain got so bad that I couldn’t move. We ended up calling 111 and their recommendation was to call an ambulance and head to A&E. The idea of being in an ambulance – as an already overstimulated autistic person – felt horrific and I almost had a meltdown; I didn’t know what I was supposed to do when I felt like I could barely move. Eventually my Mum had to all but drag me into a cab to go to A&E. For once, being autistic was a help rather than a hindrance because the receptionist moved us straight from the initial waiting room into the actual A&E department where people were being assessed and treated. We still had a considerable wait ahead of us, which felt incredibly long given how much pain I was in. It wasn’t exactly a restful environment either: besides the patients and nurses coming in and out, there were paramedics and police and one young woman who cried the entire time she was there. If I hadn’t been in so much pain and so overstimulated, I might’ve been impressed – and a lot more sympathetic. But I was running on empty and on the edge of sensory overload and all I wanted was some quiet; it was a rough night – for everyone clearly.
After a couple of hours, several different nurses did a series of tests, including taking blood and doing an ECG (during which my cannula from the blood draw was jostled, leading to the bruise pictured below – that hurt for a while). A little while later, another nurse gave me a low dose of morphine that did, thankfully, slowly bring my pain level down. But after that, we were left for several hours; even when we were the only people left in the little waiting area, no one came for us or even gave us an update. I was starting to think we’d been forgotten about.
When a doctor did finally call my name, he didn’t have any real answers for me. He did at least have a reasonable understanding of hEDS and how it can cause strange or skewed test results: a hEDS body does not react to anything the same way a non-hEDS body does, surprise surprise. So there was no obvious explanation for my symptoms but he prescribed antibiotics and recommended getting a referral to the hospital’s Gastroenterology department if the symptoms weren’t resolved by the antibiotics. I don’t love the approach of just throwing medication at a problem and hoping it helps but I was desperate and that was the only option being offered.
(Left: the bruise left by my cannula, having being knocked during A&E tests // Right: me, asleep on the sofa the day after the night spent in A&E with Izzy keeping me company)
We got home around seven and I was asleep the moment I lay down on the sofa. I was just completely exhausted. I took the antibiotics I’d been prescribed but then, when I saw my actual GP, she was surprised by how high the dose was, adjusted it, and prescribed another antibiotic, as well as sending the referral to the Gastroenterology department at the hospital. Again, it wasn’t exactly reassuring since we still didn’t know what the actual problem was and I was starting to spiral a bit about the possibility that this was more than just a passing illness, that it was something much more serious that was getting overlooked (with the potential to lead to an even more debilitating outcome). But I tried not to go down that rabbit hole. I was trying to at least give the various medications a chance to work.
Over the next few weeks, I just lay on the sofa and tried to eat when I felt able to. Between my body trying to fight whatever was going on and the fact that it was trying to function on very little fuel, I was barely able to do anything. I was forced to rest, to literally just rest; I couldn’t even do the most passive of activities. I was physically, mentally, and emotionally exhausted. My body and my brain were barely functioning: a good day consisted of a shower and watching TV (and eating what I could). But the medications started to work and, very slowly, I started to feel better and the symptoms started to decrease in intensity, even if I was still building back up my capacity after so long with so little fuel in my body. And then, just as I was finishing the courses of medication, I started to feel actually well again and I don’t think describing my mood as “overjoyed” would be an exaggeration. Eating went from being a struggle to being joyful (a word I don’t think I’ve ever used in the context of eating) and I was sleeping well, not only for the first time in weeks but in months: I was feeling so good that it felt more than a little surreal but I wasn’t complaining. It was a huge relief after eight weeks of feeling so terrible.
But less than a week later, the symptoms started to reappear and I started to feel really unwell again. I had bloodwork done (which had been ordered way back when I’d first gone to the doctor) but all of the tests came back fine or inconclusive again. I was wondering if the medications had been treating just the symptoms and not the underlying issue, which made me deeply anxious about what that underlying issue could be. I wasn’t sure what the next step was supposed to be but I’ve had a lot of conversations with a lot of different people in my various circles and, long story short, it seems that these digestive issues were a delayed response to the increase of one of my long term medications: some (professionally guided) experimentation has proved as much as is possible that my digestive system can’t handle this medication over a certain dosage so I’m currently taking a break from it (which is something you can safely do with this medication) while getting my food routine and some of my energy and strength back. After Christmas, or maybe the New Year, we’ll reassess and I’ll likely start taking it again at the lower dose since I had had a positive experience with it until that final dosage increase.
So that is where I’ve been: too sick to do anything, too sick to even write a blog post about being sick. When I say it’s the most unwell I’ve ever felt, I’m not exaggerating. I’ve dealt with a wide range of symptoms and various levels of pain during my life but never have I been so ill, in the way we typically picture illness. I’ve dialled everything right back to absolute basics and I am starting to feel a bit more normal, despite a few bumps in the road. Fingers crossed, I’ll be feeling more like myself again by the time the New Year rolls around…
Category: animals, autism, blog, chronic fatigue, chronic pain, food, heds, medication, pots, sleep, treatment Tagged: a&e, accident and emergency, acid reflux, antibiotics, anxiety, asd, autism, autism spectrum disorder, autistic blogger, back pain, blood tests, chronic illness, chronic pain, chronically ill, eds, ehlers danlos syndrome, heds, hospital referral, hypermobile ehlers danlos syndrome, ill, illness, medical anxiety, medical trauma, medication, medication intolerance, medication side effects, nausea, nhs, pain medication, physiotherapy, pinched nerve, postural orthostatic tachycardia syndrome, pots, recovery, rest, sick, sickness
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 April 10, 2022
TW: terminal illness and death.
Today is what would’ve been Claire Wineland’s twenty-fifth birthday and even though she died in 2018, I still think of her often. I wanted to do something for her birthday and since I hadn’t yet watched the documentary about her that was released after her death, I decided it was time to watch it, even if it would make me cry (not much of a spoiler: it did). She was an incredible person and it breaks my heart that she’s no longer here, that she didn’t get the chance to live a life she fought so hard for and saw so much potential in.
As I said, I wanted to honour her birthday so I sat down and watched the documentary; here are some of my thoughts…
It’s a beautifully made documentary and a beautiful tribute to Claire and the message that she dedicated her life to sharing with people. You get a real sense of her: she’s so articulate and eloquent but she doesn’t take herself too seriously (and ‘Little Claire,’ as she refers to herself, is so cute). So much of what she said was so poignant and moving and, as always, I felt deeply inspired by her words. It also gives you real insight into what living with Cystic Fibrosis is like, as much as you can as someone on the outside, and while her experiences are very specific to Cystic Fibrosis, I could also see a lot of broader parallels as a person with multiple disabilities.
I found the second half (approximately) especially emotional because I remember experiencing it in real time: watching her videos, donating to her gofundme and watching the total rise and rise, watching her live on social media when she got the call from the hospital for the transplant, waiting for news, and then finally hearing that she’d died. I remember it all so vividly. And seeing the video about needing new lungs now, hearing her say, “There’s so much more I wanna do,” makes me so deeply sad because everyone was so hopeful throughout the transplant process but then, suddenly, it was over and Claire was gone. There was so much she wanted to do and she truly saw how much she could do in this world and she didn’t get the chance; that still makes me so very sad.
The montage at the end was gorgeous and the ending was perfect. As I said, it’s beautiful and I feel like, as familiar as I was with Claire’s videos and therefore her approach to life and so on, I walked away from the documentary with a better understanding of her and her message.
There are so many great quotes throughout the documentary but here are a few that stuck out to me…
I will also be making a donation to Claire’s Place Foundation as well. Claire had a profound effect on my life and I want to pay that forward. I’ll never been able to thank her for how she’s helped me but I can do my best to follow the example that she led by, to follow the message that she embodied.
I really recommend watching this documentary, especially if you or someone close to you is living with a serious illness or disability. Having said that, it’s very emotional so please take care of yourself if you’re going to sit down and watch it.
I’m sending all of my love to Claire’s loved ones, especially today.
Category: death, emotions, quotes, video Tagged: cf, claire, claire documentary, claire wineland, claire's place foundation, cystic fibrosis, disability, documentary, health, illness, sickness

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