Finding HopeMass Observation Day 2023 (A Day in My Life)
Posted on May 13, 2023
So yesterday was the 12th of May, also known in the UK as Mass Observation Day! Every year, the Mass Observation Archive asks people to keep a diary for the day in order to record the everyday lives of the UK population. I’ve been keeping diaries for most of my life and I think that the idea of pulling together all of these accounts in order to get a picture of an ordinary day in the life, whatever that might look like, for a big group of people is really, really cool so I always try to participate. Here is my contribution for this year.
Some important things to know before reading: I’m neurodivergent, autistic and ADHD, and struggle with multiple mental health issues (Depression, Generalised Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Personality Disorder) and physical health problems (Hypermobile Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome). Having spent eighteen months in the worst depressive episode of my life, I’m recently back on medication and trying to get my feet under me again, working hard at both therapy and hydrotherapy. I’ve also recently released my latest single as a singersongwriter, ‘House on Fire,’ and am working towards several other projects.
I slept through two alarms, completely exhausted. I’d had a really late night in London seeing Ingrid Andress in concert (supported by Nick Wilson), which was absolutely amazing but between the energy expended and how late I got home, I was beyond tired.
When I finally managed to force myself awake around eleven, I lay in bed for a little while: I did a quick check in with social media (I’m trying really hard to find a healthy balance around time on my phone), did some Duolingo practice, and read a little bit of my book (both of these things are habits that I’m trying to practice daily). Then I got up and got ready for the rest of the day.
At one, I had a Zoom date with one of my best friends. We had a good catch up about what’s being going on for each of us, with many a tangent on kind of bizarre topics like alternate universes or the different sounds that insects make. And then we continued watching the TV series we’ve been watching together for the last few months, a series we both enjoyed when we were younger; we love it but we also love making fun of it so we always have a blast. We managed to watch two episodes and had a great time before I had to go. I didn’t have long before my therapy appointment so I got my bag ready and then fiddled around on my guitar until I had to leave (I haven’t been able to play for long stretches of time recently since I hurt a couple of my fingers so I’m trying to build it up again).
I was so tired and really sleepy (one of the ongoing symptoms of my health struggles and quite likely a side effect of my medication), plus my chronic pain was pretty bad (my shoulder and knee have been particularly painful for several days now), but I tried my best to push through and engage the best I could with therapy. In some ways, it was a fairly chilled session (as they go): my therapist had asked me to send her the poetry I’ve been working on over the last month or so, which I did. But it was also hard and I felt really vulnerable because most of the poems are so honest and so revealing. There were some that I said, before we even started, that I couldn’t talk about; just writing about those topics and sharing them (my anxiety about them was so high that I was really tempted to leave them out) was a big step forward. Obviously I want my therapist to know about these struggles but talking about them is beyond difficult (just the thought of it makes me want to scream or run or both); this is the best I can do for now. So we went through the poems, talking about what inspired them and my feelings about those people or experiences or struggles, which inevitably turned into bigger discussions. That meant that we didn’t get through all of them but we did cover some important stuff. I’ve been back at therapy for a while now – several months – but my new therapist is still getting to know me and I’m still getting comfortable with her; there are many things that I can talk about but there are still things that I can’t, things that I’ve never been able to. It’s a process, as I often have to remind myself.
Back home, I talked with my Mum about some of the stuff that had come up in the session but I’m always completely exhausted after therapy – I have been known to fall asleep on the sofa afterwards, hence the late afternoon appointments – so I checked in with the cats, put on The Good Place (my current rewatch), and lay on the sofa for a bit. I called one of my parents for a catch up, had some dinner, and then spent the rest of the evening working on some different things for this blog.
What should’ve been a fairly pleasant evening was complicated a bit by how bad my hair pulling has gotten. That restless, anxious energy that drives me to keep doing it is so hard to resist, especially when I’m tired, and the longer I do it, the more it hurts: my scalp, my neck, my shoulder, my elbow, my hand. But I can’t stop. There have been periods of time where different coping mechanisms have at least reduced the amount of hair pulling but I don’t have one that’s working right now. It’s frustrating and it’s exhausting and painful but I just can’t stop, regardless of how much I want to. I did look into Hypnotherapy briefly a long time ago but didn’t get very far with that endeavour, maybe because it always felt like there were bigger things going on, but maybe I’ll try again because it’s been ten years and it would be really nice not to do this anymore.
Given how tired I was, I tried to go to bed earlier – I’ve been going to bed far too late – and while I did go to bed a bit earlier, I still ended up staying up too late, catching up with my diary. I had multiple cats curled up with me, which was very sweet, so it could’ve been worse and, after all of my problems with sleep, I did at least go to sleep quickly and easily; I’m always grateful for that now, having struggled so much over the last couple of years.
So it wasn’t the most fascinating day of my life but it’s pretty accurate to my life right now and I guess that’s the point of the exercise. It’s a normal day in my life and this is what normal looks like right now, for the most part.
If you keep a diary or want to note down some thoughts about what your 12th of May looked like, the website is here, where you can learn more about this project (and their other work) and submit your entry if you would like to.
On Feelings Of Abandonment (BPD Awareness Month 2022)
Posted on May 29, 2022
I’d hoped to write and post more for Borderline Personality Awareness Month but between my depression and changing medications, I’ve been struggling to write; I’ve started a handful of posts but been unable to finish them. But, of the symptoms of BPD, my fears around abandonment have been particularly oppressive recently and so I’ve been thinking about that a lot. I thought I’d write done some of my thoughts; it’s the best I can do right now.
Fear of abandonment is a significant aspect of Borderline Personality Disorder and it’s something that I’ve personally struggled with for most of my life. I was diagnosed with BPD when I was twenty and the consensus was – and still is – that it was due to the difficult and frustrating process of being diagnosed with Autism Spectrum Disorder, where I was repeatedly ignored and invalidated by medical professionals when I expressed how much I was struggling. I guess those could be interpreted as abandonments. But I’d been abandoned in the more traditional sense multiple times before that, so the ‘foundation’ – I guess you could call it – for a fear of abandonment was already there (I’m not sure if it works like that but I noticed the pattern as I thought back): most of my friends stopped hanging out with me when I was eleven and then my one remaining friend moved abroad about a year later so I started secondary school with basically no friends; my Dad died suddenly when I was thirteen; and then, when I was nineteen, a very important figure in my life just cut me off without warning. Each one reinforced the fear and the fear just kept building exponentially. So I think it’s fair to say that I was well on my way to developing a complex about being abandoned by the time I was diagnosed with BPD.
It didn’t stop there – and there were a couple of painful ones – but, on the whole, life has been relatively stable until recently. Over the last few months though, I’ve been dealing with a lot of feelings of abandonment. Some of the actions that have caused these feelings were intentional, some not; some of these feelings are based in reality and some are based on anxiety. People who’d been consistent in my life for a long time left suddenly for work or family stuff, people not being who I thought they were, people drifting away… I don’t want to write about them specifically because the point of this is not to ‘name and shame’ – it’s just felt like one after another after another lately and it’s been really tough. And, again, I’m not trying to say that these people are deliberately, intentionally abandoning me; BPD has just made me particularly sensitive to situations that could be perceived as abandonments, especially when they seem to be happening a lot. Sometimes it’s on me for overthinking or overreacting, sometimes it’s on them for doing or not doing something, and sometimes nobody did anything but it still feels awful. We’re all human beings just doing our best (most of the time, at least). I guess the point I’m making here is that it’s a feature of BPD that I have to live with and have to navigate on a daily basis and this is a part of that.
I don’t think it’s a great leap to assume there’s a link to low self esteem. I find it hard to see why other people would want to be friends with me, which has only been exacerbated by all of my health problems: I feel like a burden (something I wrote about in this year’s MHAW post).
I remember seeing this on Instagram and relating to it to a painful degree…
Now I don’t even feel capable of being useful.
I feel like I’m always the one who can’t keep up, the one letting people down. I feel like, between me and my problems, I’m just too much for most people. Both too much and not enough at the same. And I can’t help but feel that if someone doesn’t think that yet, then it’s just a matter of time until they realise it. I know that these are my thoughts and not necessarily what other people think but it’s a hard thought pattern to shift; it’s pretty deeply ingrained at this point. It’s something I need to work on in therapy but I haven’t had access to therapy recently. Hopefully soon, although there’s a lot that’s happened over the last year that I need to work though.
I don’t know what I think about this post. I find writing about anything BPD related very difficult. It always feels much more personal and revealing to write about, compared to writing about Autism, for example. I’m not sure why. Maybe it’s because a lot of the symptoms of BPD correspond with issues that we’re conditioned to feel shame for and around: fear of abandonment can be portrayed as ‘clingy’ or ‘manipulative’; an unstable sense of self sounds scary to a casual ear; self-destructive behaviour can be interpreted as not wanting to be helped; and so on and so forth. Plus there’s a lot of stigma around BPD, even amongst the people who should really know better.
To learn more about BPD, you can find good information here and here, and here is a post I wrote about my experience with BPD in 2019. I hope this has been helpful or thought-provoking or something along those lines. I do want to write more about BPD because there needs to be more understanding around it as a disorder; it was just unfortunate that BPD Awareness Month – when I had planned to write a handful of posts about it – coincided with a period where writing felt really difficult. Combine that with a topic that I find hard to write about anyway and I’m kind of surprised that I even managed this, given how I’ve been feeling recently.
Mental Health Update (March 2022)
Posted on March 19, 2022
TW: Mentions of self harm and suicidal thoughts.
It’s been a while since I did one of these updates and the last few months have been A LOT. An update is somewhat necessary, if only for blog cohesion. It’s all been pretty awful, hence all of my posts about medication: we’ve been desperately trying to get a handle on things. I’m not sure we have but there’s a natural point here, around medication and my upcoming trip to the US, so I figured now was probably the best time to do it…
The end of last year and beginning of this year was bad. Really, really bad. I was the most depressed I’ve ever been, self harming and suicidal. I’ve been suicidal in the past but never like this, never to this extent. It was awful but it was also kind of cozy and cotton wool-y, especially compared to what came next. I had a kind of anxiety-induced breakdown, something beyond and different to a meltdown, that just wrecked me. Like, it was so bad that I missed being suicidal. The anxiety was paralysing and the whole thing completely wrung me out. It was unbearable but it was probably the only thing that would’ve forced me onto the new medication – something I’d been resisting out of sheer exhaustion and hopelessness. But I couldn’t go on feeling like that. I was scared the medication would bury the stuff that needs dealing with and I still am but I couldn’t go on like that.
So I started taking Moclobemide but I was also taking Diazepam pretty consistently, given how bad my anxiety was. Things are better than they were – and I’m writing again, which is a good sign – but they’re still not great. I’m still struggling with a lot of stuff. I haven’t been able to go to therapy for a while now and I’m not sure when I’m going to be able to go back – that unexpected twist in the road certainly hasn’t helped. So I’m feeling kind of stuck in terms of how to move forward.
Physically, things haven’t been awesome either. My appetite hasn’t recovered much from the battering it took from the ADHD meds; I’m still not really eating but I am doing better than before so that’s something (the whole thing definitely hasn’t helped my already complicated relationship with food). And after a short break, my chronic pain is back with vengeance. It’s throughout my whole body but my arms, wrists, hands, and fingers in particular have been especially painful. I’m still waiting to hear back from the Pain Clinic. I haven’t written much about my experience with them; I guess I’ve kind of been waiting to have something to write about but so far, I haven’t received any proper support. They said they’d get back to me after their next team meeting but that was early November at the latest so I’m not exactly holding my breath. The Chronic Fatigue Service gave up on me – they literally told me my case was too complicated – and I don’t have high hopes about this experience either. I’ve been waiting for some sort of support for this pain since May 2020 and I know that the NHS have been overwhelmed but that is a really, really, really long time when you’re in pain.
My sleeping is better but still not great. The melatonin helped somewhat and I managed to wrestle my sleep cycle into something a bit more reasonable: rather than lying awake all night and then sleeping through the day, I am now at least sleeping mostly at night. But I’m incredibly tired all the time and I’m drowsy in the day again, just like I was when I was taking Phenelzine. I’ve picked up my Red Bull habit again – although not to quite the same degree (yet) – which I really never wanted to do again.
Between the sleepiness and the not feeling that much better, I’m not convinced by the Moclobemide. It’s pretty reasonable to assume – at this point – that MAOIs are the only antidepressants that help at all but as I said in my Moclobemide review, this level of better doesn’t feel like enough. I still don’t feel great; I don’t even really feel good. And I’m so sleepy, all the time. I don’t feel like it’s that much to ask for: to feel functional, to write songs, to have the capacity to feel good, to even be happy sometimes. Is that really more than I should hope for?
It’s been a long few months and it’s all left me feeling very raw. And, as excited as I am to get back to Nashville, I’m also terrified. The COVID risk aside, the whole world has been through this huge thing so how could going back not be different, feel different? It also just feels very soon to be out in the world for so much of every day when I still feel so… fragile, I guess. It’s like I’ve just started putting myself back together and I’m not ready for the Jenga tower to get toppled again, to start over. I don’t know if I have it in me. I just really hope – really, really hope – that everything goes as well as it can while I’m still getting my feet under me.
Finding Hope 