Posted on July 1, 2023
Given my health situation – living with multiple chronic illnesses that require daily management – I thought it might be interesting to make a list of the things I need and use everyday and maybe if any of you guys live with chronic illnesses, you could compare it to what you use. Are these things helpful to you? Might they be? Are there things that are helpful to you that aren’t on this list?
GLASSES – This is a pretty obvious one. I can’t see three feet in front of my face without them; I am incredibly short-sighted. Both of my biological parents are or were short sighted and I believe that certain forms of Ehlers Danlos Syndrome (EDS) can affect your eyesight. Regardless, I’m not going anywhere without my glasses.
MEDICATION – I have certain medications that I have to take everyday, as well as some that are situation dependent. The most important are my anti-depressant, Phenelzine, and the beta-blocker, Propranolol, and I really feel it if I don’t take them; while it took them a while to take effect at the beginning, it can through everything off course if I miss a day. So taking your meds… very important!

PAINKILLERS – Okay, this isn’t an everyday occurrence but it’s very common, especially at the moment (I hurt my back about a month ago – a story for another time). I have them on me all the time and I regret it if I don’t. Pain can be so debilitating and if I don’t have something to manage them, if only to get home, then I’m in really trouble. I also get migraines that absolutely incapacitate me so having the pills that help with those is vital. I often feel like a walking pharmacy but I’ve learned the hard way – several times – that it’s better to be prepared.
LOTS OF WATER – Generally, none of us are drinking enough water but as a person with Hypermobile Ehlers Danlos Syndrome (hEDS), I’m sure I’m not, as hard as I try. When I was diagnosed, the recommendation was that I drink more than double what a person without hEDS is supposed to drink (x); I’ve been trying to build up my water intake but it’s a slow process. I also have Postural Orthostatic Tachycardia Syndrome (POTS), which often occurs with hEDS, and includes symptoms like dizziness, light-headedness, swelling in the legs after standing for short periods of time, palpitations, fainting, and more, all of which can increase in intensity when a person is dehydrated, after exercising, or during hot weather (I want to write a more in depth post about all of this when I have more time). Dehydration has also been linked to an increase in pain sensitivity (x). Increasing water intake has proven to help POTS symptoms so I’m doing my best to always have water with me (or cordial if the taste of water becomes a struggle, something my nutritionist okayed, given that I’d still be getting the fluids) and I think it’s helping me to drink more (x). It’s surprisingly hard though, to drink that much water.
MY PHONE – I know that many people talk about needing breaks and time away from their phones but, in general, having my phone around is more helpful than it isn’t. I find social media pretty triggering for my anxiety so I rarely find myself scrolling through Facebook or Twitter or Instagram (and I hate TikTok more than I can even articulate) whereas I find the apps for setting alarms and timers helpful, Duolingo really good for my anxiety (and mental health in general), and the Notes app vital to writing down thoughts and ideas to follow up on. I do find it stressful that it means anyone has access to me, can contact me whenever they want, but then Airplane Mode is right there… But generally, my phone is more helpful than not.
MY BULLET JOURNAL – Between my ADHD and my general anxiety about being organised, my bullet journal (or what began as a bullet journal and has evolved into a more personalised version of the system) is all but permanently attached to me. It has my list of commitments, the list of things I want to get done during the day, and anything else that might be relevant, like stuff to do with the cats or the house. I honestly don’t know what I’d do without it.
FIDGET TOYS – My hair pulling has been particularly bad recently (plus I’ve seriously struggled with chewing the callouses on my fingertips and tearing at a scar on my face) and after years of dealing with it, I have a slightly ridiculous collection of fidget toys that I rotate using as the urge to pull varies; sometimes certain fidgets are more effective than others. So I usually have at least within reach, whether that’s wherever I am or in my bag.
NOISE-CANCELLING HEADPHONES – Having had some very unpleasant experiences with just how loud the world is (you may remember this particular disaster), I got an amazing set of noise-cancelling headphones that have made navigating my hometown, London, transport systems, etc so much easier. I’ve recommended them to multiple people and those who got them have agreed that they make life – and all of its noise – a lot more manageable.

FACE MASK AND HAND SANITISER – I know that, for a lot of people, it feels like the pandemic has ended but, for many, many others, it hasn’t. I know immunocompromised people, those struggling with Long COVID, people who are still getting COVID and getting seriously sick so it certainly doesn’t feel over to me. If I’m out, I’m pretty neurotic about hand sanitiser and wearing a mask; I’m not perfect and I do sometimes forget, especially if I’m feeling overwhelmed in a social situation and there’s no prompt of other people wearing masks, but I’m still pretty on the case about it all.

A HIDDEN DISABILITIES SUNFLOWER LANYARD – I’m not sure when I first got my sunflower lanyard and I can’t honestly say it’s changed my life but there are certain places that it does make life easier, like at airports and concerts (and getting support in those sorts of places is so important). Mostly I wear it when travelling around London because having a big ‘autistic’ label around my neck reminds people to take care and hopefully be a bit more aware of what they’re doing and what’s going on around them. I’m sure there are people who see it and it makes them uncomfortable or contrary or belligerent (because, in my experience, those people tend to be everywhere) and I think there are places where it probably makes me more vulnerable but, on the whole, it tends to be helpful if I use my judgement.
JOINT SUPPORTS – Because of my hEDS, I struggle with a lot of pain in my joints (the gift that keeps on giving) so I have a handful of different supports and braces. I mainly use them for my knee and for my wrists, but I also have one for my back. They not only really help with my stability – something I’m struggling with more and more – but, as with my sunflower lanyard, they remind people that I am kind of fragile and that they need to be careful around me, especially on trains and the underground etc.
POLARISED SUNGLASSES – The last time I went to get new glasses, I mentioned that I have hEDS and the optician recommended getting polarised sunglasses because they can help with light sensitivity, something that many people with EDS struggle with: our eyes are sensitive can get really tired because they are made up of 80% collagen, which is – as we know – what EDS negatively affects. And if you can reduce the strain on your eyes – which these glasses do, even if you’re inside but it’s still very bright – then you can hopefully reduce the chances of developing problems with your eyes (again, EDS: the gift that keeps on giving).
LIP BALM – A common symptom of multiple types of EDS is sensitive skin and that can manifest as dry lips (and cracked lips that take ages to heal) so I try to always have a good lip balm around. My personal preference is the EOS Crystal Lip Balm in Hibiscus Peach, which I’m not totally sure they make anymore but it’s still available through various online stores. But it’s their crystal lip balms that are best for hydrating your lips (but it’s worth reading this article because some people have had allergic reactions to certain ingredients); the previous, more waxy versions were nice but I didn’t find them to be super effective. This one helps my skin recover really quickly (and stay hydrated) and I can barely feel it on my lips, a plus considering that the sensory experience of make up and skincare can be really difficult for me. But there are a lot of great ones out there; I’ve used several from The Body Shop that I would recommend too.
CBD GUMMIES – Over the last couple of years, my sleep schedule – for the most part – has been awful. Most nights I was getting a fractured few hours and then there were nights where I didn’t sleep at all. It was horrible and it just made my mental health even worse, which was pretty impressive given how bad it was when my sleep was at its worst. I felt like I’d tried every strategy ever suggested, including some pretty strong prescription sleeping pills; they worked-ish but I suffered from some pretty miserable side effects for not much reward. I’d always been vaguely resistant to trying CBD based products for some reason – I’m not really sure why – but I was desperate and ended up trying a few different types of CBD gummies. Within a few days, my sleep was deep and reliable again. Months later, it’s remained pretty good. Plus it’s helped me avoid relying on prescription pills, which I’ve had to do in the past even though it’s not generally advised (this was with the approval of my doctor); taking them every night can increase your tolerance and so they stop working and no one really knows what the long term effects are, although some people become addicted and can experience symptoms like hallucinations. So avoiding that is definitely a pro on the pro-con list. Research is still being done around CBD but so far it seems that the only problems are certain drug interactions, which would just involve a conversation with a doctor. None of those interactions were a problem for me so I’ve been taking them consistently ever since and my sleep has been so much better. They’re a constant presence on my bedside table.
So I hope that was of some interest, at least. As I said in my introduction, let me know if you use these things; let me know if you use other things; let me know if there are things that might work better than the ones on this list! Over to you!
Category: adhd, anxiety, autism, chronic pain, covid-19 pandemic, emotions, heds, life lessons, medication, mental health, pots, research, sleep, treatment, trichotillomania Tagged: ableism, ableist, anti depressants, antidepressants, asd, autism, autism spectrum disorder, autistic, autistic adult, beta blocker, braces, bullet journal, cbd, cbd gummies, cfs, chronic fatigue, chronic illness, chronic illnesses, collagen, covid, covid-19, daily, day to day, dehydration, dermotillomania, eds, ehlers danlos syndrome, everyday, everyday essentials, eye problems, eye strain, face covering, face coverings, face mask, face masks, fidget toy, fidget toys, glasses, hair pulling, hand sanitiser, headphones, heds, hidden disabilities, hydration, hypermobile ehlers danlos syndrome, hypermobility, injury, insomnia, joint stability, journal, lip balm, management, mask, masks, medication, mental health, myopia, noise cancelling headphones, noise sensitivity, organisation, pain, painkillers, pandemic, phenelzine, phone, polarised, polarised sunglasses, postural orthostatic tachycardia syndrome, pots, propranolol, sensitive skin, sensory issues, sensory overload, sensory overwhelm, sensory sensitivity, short sighted, side effects, sleep, sleeping pills, social media, stim, stimming, sunflower lanyard, sunglasses, supports, trichotillomania, water
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

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