Finding HopeChanging Therapist
Posted on November 5, 2023
TW: Mentions of self harm and suicidal thoughts and urges.
It’s been a year since I started therapy again after an unintentional break, essentially starting again with a new therapist. It’s been a hard and emotional process, and at times a distressing one; just going to therapy can make you feel so vulnerable and so open to further hurt as you dig into the hard stuff – wading into dark waters that you’d rather ignore and pretend don’t exist, even as they’re eroding your mental health – that adding difficulties to that already difficult thing can feel unfairly cruel. So, given that I’m me, I thought that, perhaps, writing about it might be helpful and maybe not just for me but for anyone going through a similar transition. And if not helpful, then hopefully validating in some way.
I’d been seeing Therapist A for almost seven years when everything changed. She was taking leave and I was on my own.
Pre-2021, I’d seen Therapist A once or twice a week pretty consistently since early 2016. Even when the UK went into lockdown due to COVID-19 at the beginning of 2020, we continued our sessions online; I didn’t find them as productive but it was better than nothing. We continued that way for a while, trying to manage my crippling anxiety over the pandemic, working on issues that came up as I persisted with my now online Masters classes, and continuing to work on the issues that had landed me in therapy in the first place. But then the schedule began to slip: Therapist A’s home life was pulling her away from work and I was working myself into the ground in order to complete the final project of my Masters. I barely saw her in the last four months of the course, which I really struggled with: I was digging into some pretty hard stuff, writing song after song about my experience of being autistic, and I craved that safe space to play them to her, to hear her perspective on what I was saying, talk about the feelings they were bringing up, and she wasn’t there. I told myself that it was a short term thing and that, once the Masters was over and her stuff was resolved, the schedule of our sessions would go back to normal. I think it’s safe to say that, given the title of this post, it didn’t.
I finished the Masters in September 2021 and officially graduated, walking the stage, a few months later in November. I had reduced and stopped taking Phenelzine at this point, in preparation for trying ADHD meds (and we all know how appallingly that went), and my depression was creeping back in; the situation was getting pretty desperate. But luckily, that was when Therapist A reached out and we started having sessions again. We had a lot of catching up to do but, by mid-December, we were up to date. Unfortunately, the ADHD medication was already hitting me hard and my depression had gone from a state I recognised to a whole new level of despair with increasingly overwhelming suicidal thoughts. My most vivid memory from that time is sitting in Therapist A’s new office, staring at the unfamiliar rug and hearing my voice in my ears as I confessed to those thoughts, my voice completely flat (this is known as ‘flat affect,’ a recognised symptom of depression and other mental health conditions). It still makes me nauseous to think about, even though so much time has passed and my depression has gotten so much worse since; I think, in my head, that was the beginning of this awful, awful time.
My last session was on New Years Eve and I was drowning, all of the impending new beginnings feeling more like a threat than a promise. When we hung up, I felt achingly hollow and that was only the beginning of a terrible night. But that’s a story for another time. January was passing around me, aimless and anxious, when I finally heard from Therapist A. But instead of setting up our next session, she was letting me know that she was taking leave indefinitely. Her reasons aren’t mine to tell but, between those, my ongoing abandonment issues, and my overwhelmingly bad mental health, I was devastated, spiralling into some grotesque hybrid of a meltdown and a panic attack that went on for hours: I screamed, I cried, I scratched at my face, I tore at my hair, I shrieked like an animal in pain. I guess that’s what I was. I felt like I was trying to exorcise a corrosive demon from my body but nothing helped, nothing alleviated the pain. I was shattered as brutally as if I’d been hit by a wrecking ball. That’s what it felt like, what my life felt like.
Eventually I physically ran out of energy and fell asleep, too tired and emotionally drained to even engage with the world. My depression became more and more overwhelming, compounded by the devastating effects of the ADHD medications and the loss of a massive source of support in my life, and, for months afterwards, I barely got out of bed, barely ate, barely talked. I abandoned social media and I avoided mirrors at every opportunity, to the point where I started to forget what I looked like. The suicidal thoughts were only getting stronger, stronger than they’d ever been in my life, and the feeling of being intrinsically, irreparably broken was – and is – a constant weight in my chest.
I’m not sure when or why I started getting out of bed, why I decided that I needed to go back to therapy. I think I knew I was getting into a very precarious position mentally and the excruciating pain of being inside my head was getting so unbearable that I was willing to do anything to lessen the pressure. I did see a consultant at the local mental health unit but the experience was another traumatic one: after a panic attack at the front door, a junior doctor took my history and then brought in the consultant who told me about ECT and the Ketamine trials before telling me why I shouldn’t do them and recommending doing more of the things I love (which I’d already told him I couldn’t engage with because I was so depressed). So that didn’t improve my relationship with doctors and the medical profession.
For a short while, I worked with a therapist I’d met several years previously but the sessions only made me feel worse and while I have no doubt that it wasn’t intentional, I ended up feeling more broken and more traumatised by some of the things he said, trauma that I’m still carrying around with me. So I stopped seeing him and met with several new therapists, trying to get a feel for them and their methods before committing to someone new. But, just like with Therapist A, Therapist B was the first of the group that I met (a year ago yesterday, I believe) and between her therapeutic approach, her personality, and the fact that she’d brought along a dog she knew in order to put me at ease, she was the obvious choice.
As therapists, they both trained in several of the same disciplines and their skillsets overlap to a certain degree but, when discussing a particular issue, there were differences to how they’d approach it; there has been a fair amount of whiplash in getting use to Therapist B’s approach after so many years with Therapist A. But the point of this post isn’t to compare them – they’re both lovely people and very good at what they do, at least as far as I can tell – but rather to reflect on the process of moving from one to another and the feelings that that kicked up. And a lot of feelings there were – I even wrote a song about it called ‘Grave Digger.’ During the early sessions with Therapist B, we made a timeline of my life and discussed some of the biggest moments, many of which were difficult and distressing (and remain so to this day). Revisiting and recounting the hardest parts of my life was gruelling but I did my best to push through the internal resistance and breathe through the resulting turmoil; between that and the ongoing mental anguish, it was a difficult few months. I don’t mean to make it sound like one continuous torture because that isn’t true -we’ve talked about the good experiences that’ve made me who I am, of course, and there have been sessions where we’ve laughed a lot – but I think that building a strong relationship with a therapist and making progress will always involve periods of incredible vulnerability, which is always scary and, at times, painful.
Sometimes – okay, often – I feel like I’m not making any progress at all, partly because of all the disruption and the distress it’s caused. A year ago, I hadn’t expected to see 2023 and my depression and chronic suicidal thoughts haven’t lessened, even though I am taking Phenelzine again (at a higher dose, in fact) – after many discussions with Therapist B. It has made me more functional, to a certain degree, but the decision came with a price tag: my self harming escalated from cutting my arm to cutting my face. I’m not convinced anything’s changed; I don’t feel any better. But I can see that some things have changed and changed for the better, even though I can’t feel the effects yet: something has allowed me to start talking about some of the worst stuff in my brain, even if only a little. It’s something I could never have imagined doing so I know that that’s progress, even though I struggle to feel it.
I have heard from Therapist A several times now; the news has generally been positive, which has been a great relief (and I appreciate having a little less uncertainty in my life). Therapy is continuing as normal – the current version of normal at least – which I’m pretty sure is a good thing: the idea of trying to work my way through all of the emotions that I know would come up as a result of any potential change makes me feel physically nauseous.
I’m not always convinced that I’ve adjusted and sometimes I forget that I’m not going to see Therapist A, my body moving in the direction of that office as the car turns down a different road; that experience is more ingrained than I had realised at the time. And I know I’m still carrying a lot of hurt and anger over the whole thing, even though over a year has passed. I’m not angry at the people involved – nobody chose any of this – but there is anger and, although I’ve been slower to realise it, hurt too. I think it’s easier to be angry than to be hurt. Not always but sometimes. And, as I said, I have abandonment issues, issues that I’ve struggled with for a long time, which – unsurprisingly – have been exacerbated by this whole thing. It’s hard to lose someone that you trusted to never leave (a naïve ideal, I know) and it’s hard to trust someone new, ignoring the whispers that they’re just another person who will inevitably walk away. I think these issues are important to mention but they probably need their own blog post rather than taking up space here: when talking about changing therapists, it’s not something that everyone has mixed into the equation. All of that said, I’m trying to trust and I think that, for the most part, I am, even if it does sometimes feel like a conscious, concentrated effort. The progress isn’t as fast as I’d hoped it would be when I committed to therapy again last year but the proof is there. I’m sharing things I never thought I’d share and that’s certainly not nothing.
September 2023 in Photos
Posted on October 1, 2023
It’s been ages since I did a photo challenge and I’ve always really enjoyed them so I thought it was about time I revisited the practice. So here we are. This is my September, guided by the Planner & Paper photo challenge on Instagram, Life in Pockets…
Day 1 – Wardrobe Change
Given that the weather hasn’t changed yet, my wardrobe hasn’t really changed. It was a really warm day but I don’t like being uncovered: it makes me feel really exposed and vulnerable. I did wear my brown ankle boots, which I don’t usually wear; they’ve been all but living in my wardrobe up until now but I like them too much to let them just gather dust.
Day 3 – Your Choice!
My Mum bought a new toy for the cats and they were big fans, of the catnip at the very least. It wasn’t long before they were all rolling around on the rug, blissed out on catnip. It was very cute. We don’t usually get all of them inside together at this time of year; they’re usually stretched out in the garden, either in the sun or the shade depending on their preference moment to moment. It’s very cute but it was delightful to have them all back in for while, even if only for a little while.
Day 4 – Listening To
I’m obsessed with The Good Witch by Maisie Peters and have been listening to it on repeat since it came out. I absolutely love pretty much all of them – picking a favourite is actually impossible – but I’ve been having a great time singing along to this song, ‘BSC,’ recently. Maybe because there’s a certain person I’ve been talking about in therapy that I’m reminded of when I sing some of the lyrics to this song. I love the chorus: it’s such a true, relatable, hilarious-but-still-kind-of-heartbreaking statement so succinctly put. Her songwriting is SO clever and I always lose my mind over the genius lyrics like, ‘Mister “I don’t want a label” / You made me ‘Little Miss Unstable.” I also absolutely love the bridge: ‘I am unhinged / I am scaling all these walls I’ve gone within / I am both Kathy Bates and Stephen King / I can write you out the way I wrote you in.’ That last line is so empowering and I think that being a writer myself makes me love it even more. ‘I am unhinged’ is just hilarious and so relatable and ‘I am both Kathy Bates and Stephen King’ is so freaking clever. I could honestly talk about these songs for HOURS.
Day 5 – Cozy
I didn’t take a picture for this one but I wanted to include it here because I find it so hilarious. Here in the UK, we’re experiencing a heatwave and oh my god, the idea of cozy is just so far from my mind; all I want is to cool down. I’m melting in this heat. And suffocating in the humidity.
Day 7 – Reading
I started out listening to this book on my phone, passing the time on a long drive, but ended up continuing it in physical form; I prefer physical books to audiobooks for reading but I can’t deny the convenience of audiobooks when in the car or when swimming, for example. I really enjoyed This Is Going to Hurt so I was keen to read Undoctored. So far I’m really enjoying it; I really like the way Adam Kay writes and he’s utterly hilarious.
Day 8 – On The TV
My Mum and I are currently watching the second series of Annika. My whole family LOVES Nicola Walker and I would honestly watch the worst show ever just for her. This certainly isn’t the worst show. It’s pretty lighthearted most of the time with some heavy moments and Nicola Walker’s character, Annika, is hilarious and awkward in a really endearing way. She’s a mess but all of her relationships with her family and friends and colleagues are really lovely and I honestly never want this show to end; it’s really nice to see her play a character who isn’t deeply and consistently traumatised, as most of her characters seem to be. It also seems like a really fun show to be on, which just adds to the enjoyment of it.
Day 10 – Sunday’s Are For…
In theory, I like Sunday to be for collecting myself for the coming week, recuperating, and doing my favourite things. Having said that, I’m usually frantically busy trying to catch up with things from the previous week before they spill into the next week. This Sunday, however, I was able to just dedicate my time to practicing for the show I’m playing on Wednesday and spend time with Izzy, our brand new puppy: playing when she was awake and snuggling as she slept. It was a very pleasant day.
Day 12 – Below
I had no idea what to do for this prompt until we got Izzy. I keep picking her up like this because she’s just so adorable and so chilled out, when she’s sleepy at least. And she looks so ridiculously cute. As she always does. All the time. It’s very distracting.
Day 13 – From Behind
I mean, with ears this spectacular, how could I take a photo of anything else for this prompt?
Day 15 – Boots
My favourite pair of boots, and the ones I wear practically everyday, are Sorel Joan of Arc lace up boots. They’re the same boots that Daisy Johnson in Agents of Shield wears a lot, especially during Season 2. I always thought they looked super cool and the fact that she was wearing them was an added bonus. They’re really comfortable, they look cool, and I feel like a superhero when I wear them. Is it any wonder I wear them all the time?
Day 17 – Time Alone
Right now, all of my ‘alone time’ is actually ‘Izzy time.’ I’m either playing with her and keeping her occupied so that she doesn’t get into anything she shouldn’t or I’m sitting with her while she naps. Sometimes I try and get stuff done while she sleeps but sometimes all I can do is sit and adore her; the fact that she’s actually real, that this absolutely gorgeous little creature is mine to love is still kind of overwhelming and I just find the time disappearing as I stroke her and cuddle her.
Day 18 – Something Brown
I could’ve easily stuck another puppy picture here but I thought I’d try and come up with something a little more interesting, for one day at least. There’s no such thing as too many pictures of this puppy. So here is my beloved guitar, an electro-acoustic Taylor that I got during my first year at university. It has the most gorgeous sound and I honestly have no desire to ever get a new one, even if I could afford to get a ‘better’ one. This one just sounds and feels so beautiful; it feels like an extension of me, and of my songwriting.
Day 19 – Something For You
A couple of months ago, I ordered this necklace from Etsy. I’ve been looking for one like it for years and having finally found it, I didn’t want it to slip away again – I’ve let that happen far too many times. I have such anxiety around money that I struggle with spending it on myself when there isn’t a ‘productive’ purpose (like learning a new skill) but I’ve been working so hard at my physiotherapy and hydrotherapy that I said, ‘fuck it,’ and bought the necklace. I can get my head around a little reward for over a year’s worth of hard work.
Day 20 – Selfie
I did it for the challenge but I really don’t like taking selfies. I can just about manage selfies if they’re with people or as part of a special event or at a specific place but I’m rarely happy with how I look in them. I think a big part of that is that I’m masking really hard in order for the photo to be a good one and so I think I just don’t end up looking like myself. I like candids because they’re in the moment and honest and real. But, as I said, I have obliged for the challenge.
Day 23 – Lazy Afternoon
Lucy was certainly having a lazy afternoon (while I was busy working away). Of all of the cats, she’s the most unfazed by Izzy’s appearance: she’s not thrilled and they’re not playing (yet?) but Lucy will chill out in the same room and will engage with her to a limited extent. Having said that, she’s not shy about giving Izzy a swipe if Izzy gets overexcited and ends up swerving too close to her. The other cats have barely managed five minutes in the same room; I have to hope that they’ll get used to her over time, especially as she learns what to do and what not to do. Anyway, as well as Lucy’s handling the Izzy situation, she’s happiest when Izzy is downstairs and she can just relax without having to worry that Izzy might bound over to her at any second. So this was a thoroughly blissed out moment, unbothered by a tiny canine.
Day 25 – 11am
This is my physio set up, just before I ran through my personal exercise plan. I feel very lucky to be able to work with a physiotherapist and not just a physiotherapist but an excellent physiotherapist who has a really good, working understanding of Hypermobile Ehlers-Danlos Syndrome. I’ve been working with her for a few months now and have a series of exercises that take about fifteen minutes to do, trying to strengthen and stabilise my body. As of earlier this week, we cut one exercise and added two new ones for my elbow and shoulder because I’ve been experiencing serious pain in them for a really long time now. So I’m still getting to grips with those. Although, having said that, my arm has been sore as a result of my recent COVID jab (my fourth, I think) so I haven’t managed as much as I usually do. If it follows the same pattern as the others, it’ll be fine in a couple of days and I’ll be able to work at normal capacity again.
Day 28 – Book Review
I love Trista Mateer’s poetry and I loved her previous book, Aphrodite Made Me Do It. I loved Artemis Made Me Do It even more. I read it in less than twenty-four hours, folding a ridiculous number of page corners. Her poetry is so visceral, like the earth just spits it out; it’s beautiful and delicate and brutal and fierce and I feel like I could write a song inspired by every poem. I really loved it and I can’t wait to read the next one in the series.
Day 29 – Weather
My birthday was on the 29th and part of that involved doing this really amazing Equine Facilitated Learning session about building confidence and assertiveness so I spent the morning in a field, working with three gorgeous horses. It was a bit chilly but a beautiful day with warming sunshine and big blue skies. It was a good day.
Day 30 – Self Care
One of the things that makes me feel like my best self – physically, mentally, and emotionally – is swimming. And, near where I live, the pool does this awesome thing on weekend evenings where they turn off the main lights and place a few lanterns around, basically lighting the space with the pool lights. They keep the number of people to two per lane so it never feels crowded or cramped and they play music to minimise the potential echoes in the room. All in all, it’s a really amazing way to swim and such a soothing experience, especially for someone like me who often finds swimming pools overwhelming and overstimulating. I’ve always loved swimming so I’ve put up with it, trying to find the quietest times to swim at whatever pool I’m going to but this is just amazing. It’s my favourite place to swim and I never get tired of it. I feel very lucky to have discovered it and to have pretty regular access to it.
I didn’t manage to take photos every day: sometimes I was too busy, sometimes I forgot, and sometimes nothing about the day matched the prompt (like ‘cozy’ in a heatwave or ‘fall leaves’ when we don’t have anything resembling autumn yet). I also didn’t do the bucket list because I find that they trigger my anxiety at the moment. But on the whole, it was really fun to document my days with photos again. I have a fair amount of fun things coming up over the next couple of months so I wouldn’t be surprised if I find myself doing another challenge sooner rather than later.
Increasing The Phenelzine (June – July 2023)
Posted on September 23, 2023
TW: Mentions of depression and suicidal thoughts.
NOTE: I wrote this a few months ago but waited to post it. There were a couple of things that I felt I wanted to comment on in the conclusion but I needed a little bit longer before I felt confident enough to do so. So I let things play out a bit but then some life stuff happened and this post got away from me for a bit. But here we are. Here it is.
Things had improved since I’d settled on the daily 30mg of Phenelzine but it still didn’t feel like enough. I wasn’t crushingly depressed but there were still problems, still areas of my life that weren’t back to what they used to be. So, for a while, I’d been thinking about increasing the Phenelzine, upping it to the high dose of 45mg (with my psychiatrist’s permission, of course). I had tried it before and it wasn’t the right thing for me – it was like the lights were too bright all of the time – but I hadn’t been coming from as low a place as I was this time; I hadn’t been trying to pull myself out of such a bad place. So, with that in mind, I wondered whether the higher dose would help, whether it would give me the additional rungs on the ladder that it seemed I still needed.
So I saw my psychiatrist and while he was quick to comment on how much of a change he could see since I’d started on the Phenelzine again, he listened to what I had to say and we discussed trying the higher dose. He asked me what the most important thing to me was and I said that I wanted my songwriting ability back. I’d written a couple of songs since I started taking the Phenelzine again and I loved them but they’d taken so much time and effort to write, much more than it would usually take. I used to write multiple songs a week with ease but, on the 30mg of Phenelzine, it was taking me months to drag one song out of my brain. So I wanted to write like I used to again. He listened and ultimately agreed: he said we’d use my creativity as a benchmark, using how many songs I was writing as a measure of whether the increase was helping or not (alongside whether I had any negative side effects, of course).
For a while, life was overwhelmingly busy and chaotic and there were things I needed to be able to do, that I needed to rely on my body and my behaviour (as much as I could normally, at least) to manage. So it was a while before I was able to increase from 30mg per day to 45mg per day. I started the increase on 17th June 2023 and took notes for the first six weeks (since the side effects and general effects can be quite subtle), finishing this record on 29th July.
And, as always when talking about medication, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
WEEK 1 (15mg in the morning and 30mg at night)
For most of the week, I didn’t feel any different. I have been more keen to engage with stuff, especially new stuff, but that’s not new exactly; it might’ve increased a bit but I couldn’t be sure. I was consistently tired and, on more than one occasion, I fell asleep before I could take my medication at night; I was also really drowsy during the day, needing naps to function, to make it to a decent bedtime. My back pain was relentless too, although my TENS machine did help.
Come the end of the week, my sleep was a mess and I was completely exhausted. I ended up needing multiple naps during the day and still barely making it to a respectable bedtime, forgetting my pills again. But I was managing to do a lot: I worked through my to-do list, went out to see some cool art, managed to avoid a meltdown when a creepy guy wouldn’t leave me alone, and spent my short evening snuggling with the neighbour’s puppies. But even though I hadn’t really had the time to sit down and do any writing, my brain was like a firework show, ideas appearing one after another at a dizzying speed. It was more than a bit overwhelming. I didn’t manage to find out, exhausted as I was, whether I could turn those ideas into anything but it was a definite start.
WEEK 2
The beginning of the week was so hot (the result of a hideous but thankfully short heatwave) that it felt almost impossible to do anything; moving around just made me even hotter, sickeningly so (heat like that makes my POTS symptoms go haywire, which just makes everything harder). For the most part, I dozed, cuddled up with one of the puppies. I was easily overstimulated and exhausted but I made it home to Brighton (with an impromptu nap on the train) and had a quiet evening before going to bed, falling asleep before I could take my pills or turn the light off.
The rest of the week was a really mix. I slept better, longer and deeper – and I actually remembered to turn off the lights and take all of my pills before falling asleep – but I was so tired; I kept falling asleep on the sofa or in the car or really anywhere I sat down. I was just so exhausted. I struggled during the day, unable to concentrate even though it felt like my brain was full of ideas and things I wanted to do. But I just felt like I was being sucked down by sleep and staying awake took so much effort. It made me feel like I might start crying at any moment.
I had some really bad days, where I felt overwhelmed and overstimulated and miserable and just so tired that I couldn’t do anything, which, on top of it all, left me feeling so frustrated. I had a horrible time in therapy and was just feeling really fragile. Plus, I was really stressed about the puppy situation: I want her so badly and I have no idea what’s going on; the idea of losing her from my life makes my heart ache.
But despite all of the difficulties, I was surprisingly productive, and was busier than I’ve been in years. At least that’s what it felt like. I started to work on some of the song ideas that I’ve been turning over in my head; I hung out with friends; I managed to swim; I went to see the fantastic Candi Carpenter play a show in London (I’d missed their last UK shows because I was self-isolating) and then we all went to the pub afterwards and had a great time (highlights include all of us singing Taylor Swift karaoke and running into uni friends I haven’t seen in years); I even did a drawing class. It was all really good but it was just A LOT. It was hard to process it all.
WEEK 3
For the first half of the week, things were okay. My sleep was pretty good: I was sleeping long and deep, although I did have the weird, busy dreams that I’ve come to associate with a medication change. I was still incredibly tired during the day (I fell asleep upright on the sofa several times) but I did manage to get some stuff done. And even though my back was hurting, I did manage some hydrotherapy.
Mentally, I wasn’t doing super well. I just felt really overwhelmed, drained and fragile. It felt like my depression was just hanging around, deep down, all the time. I was still functional and I even managed to do quite a bit of songwriting, more than I’d done in a while, but it was hard. I went to an amazing Maren Morris concert with my friend, Richard, and although I had an amazing time at the show, everything leading up to it and then the aftermath was a really struggle: getting there was exhausting and painful; the disability accommodations were as stressful as always; I was exhausted and freezing by the end of the gig; and it took forever to get home. I had a slow start the next morning, exhausted and aching after the concert, and despite the decent night’s sleep, I was a mess: I was completely overwhelmed and ended up in tears multiple times.
The second half of the week was really difficult. My sleep was a mess, making me a zombie during the day, and my emotions were all right at the surface, raw and ragged. I was beyond stressed and overwhelmed by everything that was coming up over the coming weeks; it felt like it was all barrelling towards me at an unstoppable speed. Both my body and my emotions felt so heavy and I was constantly bursting into tears.
WEEK 4
This week was pretty much dominated by my overwhelming, paralysing anxiety and stress over trying to get Taylor Swift tickets and the hurt and devastation of being treated so badly as a disabled person. I wrote about that here so I won’t rehash it all but I wanted to include what a devastating effect the experience had on my emotional and mental states. While the experience is, of course, separate from whatever the Phenelzine was doing, both are tied up with my emotional regulation and the effect my feelings have on me. As I said in my post, I was basically in various states of meltdown for all three days of the tickets presale. And it wasn’t just the suffocating anxiety of not getting a ticket: the way that Wembley Stadium treated disabled fans was appalling and it was just such a gut-punch to realise that they either didn’t care about us or they didn’t even remember that we exist. It was really distressing. I was so stressed and so depressed, even after I managed to get tickets. Just the thought of not getting to see this show, having looked forward to it for five years, had my emotions so big and loud and devastating that I felt this overwhelming compulsion to scream until my throat tore, to rip my skin off. With so little bringing me joy these days (and my chronic suicidality ever present and oppressive as a dark cloud), the thought occurred to me that, rather than endure the excruciating pain I know I would feel if the shows happened and I couldn’t be there, I should just kill myself to avoid it all. That thought just made me feel even more fucked up than I usually do. My emotions are so big and so precarious that even the smallest thing can tip me into serious and scary lows and this isn’t the smallest thing, given how much Taylor means to me. As I said in my post about the experience, these feelings are due to my mental health, to my depression and my chronic suicidal thoughts, not specifically to seeing Taylor; it’s about the fear of losing one of the few sources of joy when you’re in a really dark place. Those things will be different for everyone but the fear of losing them is so overwhelming that words don’t really do it justice.
The exhaustion and residual stress from that whole… experience had completely drained me of energy and, for several days, I was so tired that I could barely function (although I’d get sudden jolts of adrenaline, thinking I should still be on the phone, that I’d fucked up and forgotten, and was losing my chance). My sleep had been screwed up by my anxiety and I had pain from the physical tension I’d been holding in my body for three long days; both of those took most of the week to settle back to normal, normal being exhausted and sleepy and not able to do much. That was causing me a lot of anxiety too: I had so many things that needed doing but I was just too tired to do them and the anxiety over how they were piling up was starting to get overwhelming. I did manage to spend some time with friends, which was really nice, but I struggled to feel connected while still feeling so emotionally drained.
WEEK 5
The last week had exhausted me and it showed over the following weeks in various different ways. I was going to bed early, sleeping long and deep, and often struggling to wake up. And even with a long night under my belt, I was tired and drowsy during the day, often falling asleep on the sofa (and sometimes at my laptop); I struggled to concentrate, my eyes were tired and straining by the end of a day, and sentences stopped making sense. I was just completely done in. I hadn’t emotionally recovered either. I felt utterly overwhelmed, fragile and miserable; I was suicidal in the face of what just felt like too much. It wasn’t particularly surprising when I had an awful meltdown.
I did manage to be vaguely productive though, despite it all. I worked hard at my hydro and physio; I went to therapy; I managed some writing; I saw a couple of friends and had a good time with them, even if I didn’t feel as present as I usually would; I went to a show a friend runs (and the whole thing made me very emotional); I attended an interesting webinar about ADHD. But, even with how much I was struggling to be present in my mind, nothing felt quite enough, like I hadn’t done enough or gotten as far as I’d wanted to. I’ve been trying not to beat myself up but I’ve never been very good at that, being kind to myself that is.
WEEK 6
Another week and my sleep still wasn’t great. I was still falling asleep early (sometimes forgetting to turn the light off or put in my retainer) and sleeping long hours, although I was starting to wake up at a more reasonable time. I was still really tired during the day, taking some accidental naps, and struggling to focus. It was getting better but, as I said, it wasn’t great.
I was working hard to build in better habits too, alongside the medication and therapy. I worked hard at hydrotherapy and started physiotherapy too. The physio was a bit of a shock to my system and I was sore for the first few days (which disrupted my sleep but then pain always does). But, midweek, I ran for a train and actually caught it, despite thinking that there was no way I was fast enough or strong enough to make it (I would’ve had to wait an hour on a cold platform for the next one so I was certainly motivated). There’s no way that, a year ago, I could’ve managed that; I was so ridiculously proud of myself. So the hydrotherapy has definitely made a difference and I feel confident that the physiotherapy will only complement that.
I was also trying to drink more water. I definitely don’t drink enough and, given that the Autonomic Dysfunction I struggle with as part of my Ehlers Danlos leaves me prone to chronic dehydration, I should be drinking a lot more than the average person. I’m nowhere near that yet but I’m already drinking more than I was when I first measured my liquid intake.
It’s hard to know for sure but I felt like I was more productive and motivated than I had been previously. I was actually getting things done and getting them done at a faster pace: blog writing, songwriting, researching. I even went to an online writing workshop that I really, really enjoyed: the session was fun, the people were really nice, and I was really excited about what I wrote. My brain was just desperate for new things and new information; it was excited to learn. I don’t really know how to explain it any other way. I also went out and spent time with friends, went to a songwriters’ circle, and saw family friends. I was more social than I’d been in ages but I was kind of feeding on that, which is really unusual for me. But it was nice. And exciting. Oh, and I also started mentoring sessions for my creative projects, which I felt really optimistic about.
Unfortunately, the week didn’t end as well as it had begun, my depression hitting me like a tidal wave at full strength. It was so overwhelming that I felt like I couldn’t breathe, couldn’t do anything. I was also really stressing about food and eating, feeling guilty as soon as I ate anything. I was miserable and exhausted and couldn’t focus on anything; I slept on and off during the day, dizzy and ears ringing. One side of my body was tingling too and we were this close to calling the doctor. It was horrible. I also found that I physically couldn’t relax: my body felt tensed up even though I wasn’t tensing my muscles (so I obviously couldn’t relax them if I wasn’t actually causing the problem). After several hours, my muscles started to hurt but I still couldn’t unclench them. My legs were twitching too and when I thought about it, I realised that that wasn’t new, that it had been happening on and off for weeks, as had the tensing in certain muscles. The more I thought about that, the more stressed out I got. I know that certain doses and/or extended use of certain medications, including Phenelzine can cause Tardive Dyskinesia, a movement disorder with symptoms including sudden and irregular movements in your face and body. It’s something that gets worse over time and the idea of developing it was really distressing to me.
In the following weeks, my sleep evened out, helped by CBD gummies and the occasional Diazepam or Zolpidem. I spoke to my psychiatrist about the twitching and whether it could be Tardive Dyskinesia. He felt that it was unlikely, that a much more likely cause was the physiotherapy, which I’d started around the same time the twitching started; he thought it was more likely that it was just my muscles waking up with the exertion I was putting them through for the first time in so long. So my anxiety was abated.
But now, several months later, the twitching is still happening and my anxiety is growing again. I’m going to go and see my psychiatrist and have a proper conversation about it because if it is something – something that needs to be dealt with rather than something that’ll just resolve in time – I need to know so that, at the very least, I can think about the options, whatever they are. It’s hard to believe they’ll be anything but bad though; past experience doesn’t exactly fill me with confidence.
Finding Hope 