Finding HopeMental Health Awareness Week 2022
Posted on May 14, 2022
I have to admit that I often struggle with Mental Health Awareness Week, particularly the flooding of social media with “it’s okay not to be okay” and “reach out to someone if you need help”; it makes me want to scream in frustration because we are so far past that. If we’re going to create better support for mental health, we need more than that. This year, the theme is loneliness, which is an apt one, two years and change into this pandemic. I’m certainly seeing a lot of loneliness around at the moment: those with mental health issues, disabled individuals, people who are still shielding and feeling abandoned by society because of the dropped mandates… I can’t imagine what it’s like to be in or from Ukraine right now…
All of these situations need to be talked about and since the Mental Health Foundation is encouraging everyone to share their experiences with loneliness for Mental Health Awareness Week, I thought I’d write about my experience, as a disabled person with mental health issues.
This is something I find kind of hard to talk about. I guess talking about it – and writing about it – makes me feel a little guilty because I’m not alone. I know I’m not alone. I have a great family and some really wonderful friends who have been there for me through some really tough stuff. They try so hard to make sure that I don’t feel alone. Fortunately, we – as people – don’t need to understand each other’s experiences point for point to find friendship and create those important, supportive bonds: I have a friend who has experienced very different trauma to me but there have been a lot of similarities throughout both of our journeys that have made it possible for us to relate to each other. I’m grateful for that, more than I can say.
But it’s also true that I do, often and increasingly, feel alone, feel lonely. And I think that that’s because no one – no one I’ve found at least – really understands what it’s like to be in my head, in my body, in my life, dealing with the problems that I have and the ripple effect that they can create. I’ve had multiple doctors and medical services simply stop helping me (or refuse to help me at all) because my case is “too complicated.” These are the professionals – the people who are supposed to really know and understand this stuff – and even they don’t know what to do with me (and those abandonments, plus other abandonments in my life, have left me with a lot of issues and fears that I have to work on every day). I think the issue is compounded by the fact that I have multiple diagnoses so, even though I may fit into the autistic community, I still don’t feel like I fit in because I also have OCD and BPD and so on; I can’t imagine there are many people who fit into the same community as me when the criteria is so narrow. I’m also not entirely convinced by the idea of community based on diagnosis either, to be honest, especially when the diagnosis covers such a range of symptoms, behaviours, and experiences, like Autism Spectrum Disorder. Anyway, my point is that I don’t feel like I fit in, even with the people that, on paper, I would likely get along with.
As I said, I’m not alone. Even though I’ve never felt like I quite fitted in, I have some great friends and friends from all areas of my life: school, sixth form, uni, Masters, as well as stuff outside education… But I can’t always keep up with my friends, with my peers, and I can’t always do the things I wish I could and I find that so hard. I always end up feeling like there’s a gap between me and everyone else and it’s lonely. Not being able to physically keep up with those around me means that I often feel left out – even if that’s nobody’s intention. And there’s a level of embarrassment and shame about being the one who can never keep up, the one who is always asking people to wait, always having to double check or change or cancel plans. I don’t know where that comes from – I know my friends would never want me to feel like that. But still, it’s there. It widens the gap and it makes that loneliness worse.
The older I get, the more I notice it – the gap. While I spend my time trying different medications, going to appointments for my physical and mental health, and resting after doing what I can manage to do, a lot of my friends are pursuing PhDs, establishing careers, living independently, and building lasting relationships. Our life experiences are just so different. And the longer it goes on, the bigger the disconnect feels. It just feels like the future is full of loneliness and I don’t know what to do with that.
I know this is kind of a depressing post. It’s a depressing truth, although it might have come out differently if I weren’t coming off my antidepressants; if I were in a better place mentally, I might have a more hopeful outlook. I don’t know.
I don’t think it’s a bad theme – loneliness can have a devastating impact on a person’s mental health – but the Mental Health Foundation’s website says that they want to “shatter the stigma around loneliness” and while I can’t say that there’s no stigma associated with loneliness, I can think of so many things that might have more impact as a theme, might make more of a difference, like access to mental health support or the impact of social media or… I don’t know, something more specific than loneliness or nature (last year’s theme). (I talked about this more in my Mass Observation Day post.) As I said at the beginning of this post, I find Mental Health Awareness Week difficult because I so often feel like the information being circulated is somewhat obvious, that we could – and should – be going deeper. I guess it all just feels a bit surface level but I don’t know how that changes, if anyone else even feels this way. It just doesn’t feel like enough. It’s one week a year and it doesn’t feel like enough.
A Love and Hate Relationship with Autism Spectrum Disorder
Posted on March 30, 2022
Being autistic is complicated (to state the obvious). It’s never just one thing, in my experience at least. It’s not even one thing on one day, one thing in one moment. It’s good things and bad things all wrapped up together and while I can advocate and applaud ‘Autistic Pride,’ I’m not sure I’m there yet. But I can appreciate the good and the bad and so, considering it’s World Autism Acceptance Week, I thought I’d post something about just that: the good and the bad and learning to live with them…
Autism, as we know, is a neurobehavioural condition so the traits associated with it are right down in our wiring, just like the rest of our personality traits: being autistic is at the very core of us and everything else is built upon that foundation. There are some things about being autistic that mean a lot to me, things about myself that I love and value, including…
- A NEED FOR AUTHENTICITY – Obviously I can’t control whether or not other people act authentically but I need to be authentic. If I act differently to how I feel, it has a negative impact on my mental health and on my happiness. So, to be happy and mentally healthy, I have to act on how I feel and be who I really am and it’s in following that rule (for lack of a better word) that I’ve had the best experiences and created the things I’m most proud of. As I said, I can’t make that choice for other people but I do think that, on the whole, I get on better and make stronger connections with people who are authentic.
- PASSIONATE ABOUT THE THINGS THAT ARE IMPORTANT TO ME – If I love something, I love it with everything I have. I will fully immerse myself in said thing; I actually find it hard not to. That can sometimes make doing normal, day-to-day things hard because all I want to be doing is engaging with this thing I love but I’d rather love wholeheartedly than feel ambivalent about stuff.
- LOYALTY – When I care about somebody, I’m all in. I’ll do anything for my friends, sometimes to a pretty extreme degree: like, once I improvised travelling home from Nashville because my flight was cancelled and I’d promised a friend I’d be home for something or like, once I woke myself up every hour to check whether a friend who was in hospital had tried to get in touch because she was scared about being in hospital alone at night. Putting that much into a friendship or relationship does mean I’m more likely to get my heart broken (and it already has been) but like all of the things that matter to me, I’m never going to want to care less about people. I mean, on the bad days, sometimes I do – it would make life easier – but, as a person, I like that I care that much. It’s not always easy (or healthy) but overall, I always think it’s better to care more than less.
- STUBBORNNESS – I am stubborn as hell and sometimes it’s a pain; sometimes I can’t let things go even when I want to. But being stubborn has also gotten me through a lot of hard stuff and helped me make a lot of good stuff happen.
- IT GAVE ME PURPOSE – All I want to do is make the world a little bit better. That’s all I want. I hate seeing people unhappy or things not working so I’m always looking for ways to help and make things better but the world is a big place with lots of problems and it’s easy to feel overwhelmed and helpless. But finding out that I’m autistic, that gave me a place to start and the more I’ve learned, the more I want to help make being autistic an easier, less harmful, and ultimately better experience. And that’s what I’m trying to do, whether that’s with this blog, my music, or by trying to improve the accessibility and understanding wherever I go.
But there are also things about being autistic that I hate, that I struggle with, that cause me problems, and upset me deeply. I know it’s not healthy to focus on the difficult parts (unless you’re, for example, working on something specifically in therapy or counselling) but I do believe that acknowledging the negatives is important and validating. Endless positivity is not helpful and can end up being harmful so here are some of the things that I hate about being autistic…
- LACK OF INDEPENDENCE – With the sensory issues, fatigue, mental health problems, etc, my independence is severely hindered. And as hard as I work to improve my stamina and my mental health and so on, I don’t know how I’m ever going to be completely independent. If it’s even possible. The idea of living by myself is one that I can’t even really imagine ever being realised. And with that being such a standard rite of passage that holds such weight, it’s hard not to feel inadequate or broken.
- FEELING FROZEN – I still don’t really know how to describe this feeling and I can’t say for sure what caused it or when it kicked in but I feel very stuck, particularly in the developmental sense. I feel stuck somewhere between teenager and adult; I feel all the pressure of being an adult but I also feel incapable of doing a lot of the things that make it impossible to meet all of those expectations. All of the things that impede my independence come into play here too, like my lack of energy and my issues with pain. Just existing is an exhausting experience; living as everyone else does feels like an impossible dream.
- THE SENSORY DIFFICULTIES (WITH FOOD IN PARTICULAR) – Sometimes just being is really hard. Every light is too bright, every sound is too loud, every smell is overpowering, every fabric is itchy… and so on. It’s not like that everyday, at least not for me. But it is like that a lot. And most of the time, it makes doing normal things like eating, drinking, going about my day, etc, just that bit harder. I would love to not be phased by restaurants for example: to not worry about the fact that there’s probably nothing I can eat, or potentially even drink, apart from water (and even then it usually has lemon or lime or cucumber in it). Even small things feel so complicated. I’d love to be able to just meet a friend for coffee and that be that but between whatever we eat or drink, how loud it is, and all of the other sensory factors (and that’s not even thinking about all the sensory stuff involved in the travelling), it’s just exhausting. And I wish it wasn’t.
- THE RESULTING MENTAL HEALTH PROBLEMS – While we will never know for sure, I (and the mental health professionals that I trust and have worked with for years now) strongly suspect that many of the mental health issues I deal with, are at least partly down to being autistic, and specifically, being diagnosed as autistic so relatively late. Anxiety, depression, OCD, BPD, and ADHD are all comorbid to Autism. Maybe some of them would have developed on their own but I’m sure the Autism did not help and the amount of distress that these problems cause isn’t something I can easily put words to. Every day is a struggle because of them. Let’s leave it at that for now.
- THE LACK OF UNDERSTANDING, FROM EVERYONE (INCLUDING MEDICAL PROFESSIONALS) – Everywhere I go, I have to teach people about Autism, even the most basic stuff. From friends, to teachers, to doctors, even to people whose entire job revolves around accessibility. No one seems to know anything, or at least anything beyond the basic stereotypes. There’s almost no decent representation out in the world, in the media (which makes it very easy to feel alone and/or broken) – the vast majority of it is harmful. So many people still don’t even know that Autism manifests differently in girls. Autism is a complicated thing so I don’t mind helping people understand it, understand some of the nuance, but I hate how bad the general understanding is, especially when it’s people who should know better (when it’s part of their job, for example). This is why so many people are diagnosed so late and struggle so much: even the people who should have a working knowledge of Autism don’t and it’s really not good enough.
So, this was a bit more exposing than I’d expected when I started writing. But there it is. Almost a decade later and I’m still figuring out what it means, to me, to be autistic. It’s complicated and it’s hard and some days I’m really proud that this is who I am. I guess the goal is to have more of those days.
Operation Bupropion: SNAFU
Posted on February 12, 2022
TW: Mentions of self harm and suicidal thoughts.
So, I’ve been gone for a while. After having a bad reaction to the first ADHD medication, I had another bad reaction to the second, Bupropion, as well. Everything fell apart and I was really unwell for months; I couldn’t get out of bed, let alone write. I’m still not feeling great but things are better than they were and I am starting to feel able to write again, hence this new post.
After the mess that was Xaggitin, I was hopeful (kind of – in the only way you can be when you’re feeling hopeless and suicidal) that Bupropion would be better, given that it was an antidepressant but one that’s supposed to help with ADHD. I honestly don’t know whether it was better, which is somewhat mindblowing considering how awful the Xaggitin was.
As always, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
BUPROPION – 150mg
WEEK 1
The most pressing of the side effects was the nausea: it was overwhelming. And it went on all day, every day. It was horrendous. I was barely eating and while I can’t see it, I’ve had multiple people comment that I’ve visibly lost weight. (I also had a weird reaction to the Christmas tree in that it made the nausea even worse – it also irritated my eyes, nose, and throat, making my cough even worse, which wasn’t pleasant.)
I had consistent difficulty sleeping. I was always wide awake until very late at night (or early in the morning) and then I struggled to get up at anything approaching a reasonable time the next day – I also had a lot of very vivid, stressful dreams, which is something I’ve noticed pops up when I change medication. I was physically exhausted all the time (both therapy and hydrotherapy, for example, had me falling asleep on the sofa, which I haven’t done in months) and I was feeling very burned out and overwhelmed with nothing left emotionally as well as physically. I had a couple of almost meltdowns as a result (I think the only reason they didn’t turn into full on meltdowns was because I was so physically exhausted so I just shut down instead).
I was very depressed, feeling hopeless and having suicidal thoughts. I was also restless and had this ongoing sense of unease. It was awful but my psychiatrist strongly encouraged me to stick with it for a month to really get a feel for it, for whether it would help or not. The depression and suicidal thoughts could’ve been a hangover from the Xaggitin and the only way to know was to give it more time.
I was also having headaches, not quite at migraine level but not far off.
WEEK 2
The nausea continued, unfortunately. It was still bad but it was a little better on some days, I think. All of the food around Christmas was pretty stressful though: I still didn’t really have any appetite but I did manage to eat a bit, although what I used to consider a normal potion made me feel very unwell.
My sleep schedule remained messed up too. I was getting to sleep at around three in the morning (regardless of any help, that being medication or the methods I’ve used in the past that have helped) and then struggling to get up the next day. There was one night where I never got to sleep and then, the night after, I slept for fourteen hours and felt well rested for the first time in longer than I can remember. I’d hoped that that would right my schedule – at least a bit – but it didn’t. I was back to struggling to sleep the night after that. And I was still having the terrifyingly vivid nightmares. I was also physically exhausted: Christmas Day and a small family thing the day after Boxing Day, in particular, absolutely wiped me out.
The anxiety and depression persisted, plus I felt very, very emotional; I was restless and uneasy and I felt very raw and lost. It was pretty overwhelming.
The headaches continued too, plus the weird response to the Christmas tree: it made me feel very nauseous and made my eyes burn horribly. I love having the Christmas tree up so that didn’t help my mood.
BUPROPION – 150mg (+ PROPRANOLOL (20mg))
WEEK 3
I hadn’t wanted to start Bupropion and Propranolol at the same time since it would be impossible to tell if one of the two wasn’t working. So, two weeks in, I added the Propranolol. But while I’d remembered that, I’d lost track of time and forgotten that, after two weeks, I could up the Bupropion. So I was taking the half dose three days longer than I’d intended to (in which I also got my COVID booster).
The trouble sleeping continued. I was finally getting to sleep between two and five in the morning and then, of course, struggling to wake up in the morning. I was completely exhausted and finding it a real struggle to get out of bed at all, something that certainly wasn’t helped by my depression. Feeling depressed, hopeless, overwhelmed, and anxious… getting up and facing the world felt like more than I was capable of.
The nausea was still very present too and there were moments when I had to stop and sit down on the floor and just focus on not throwing up. It was very unpleasant. I couldn’t really handle food, not that I really had any appetite anyway.
I also had a headache that grew into a vicious migraine (with intensely painful light sensitivity). The COVID booster was positively pleasant in comparison. My arm was sore and heavy for a few days but that was it, symptom wise, as far as I could tell.
BUPROPION – 300mg (+ PROPRANOLOL (20mg))
WEEK 1
I only managed five days on the full dose of Bupropion. It was clear straight away that it wasn’t agreeing with me.
If I was sleeping, I was sleeping terribly: I was getting to sleep around three at the earliest and then desperately struggling to wake up in the mornings. But between the depression and the anxiety, I found getting out of bed felt overwhelming. The depression had gotten even worse – the worst it’s ever been – and everything just felt hopeless. The self harm urges and suicidal thoughts were relentless. I felt checked out of my life and I just couldn’t engage with anything, even things that I love and things that have previously helped when my depression’s been bad. The anxiety amped up too. I was just overwhelmed, terrified that something bad was going to happen; I felt like I was constantly trying to stop myself from panicking. The nausea and lack of appetite also persisted; I was barely eating anything. But I have to confess that I didn’t really care. Food is so stressful for me that not eating was a relief.
BUPROPION – 150mg (+ PROPRANOLOL (20mg) + LORAZEPAM (2-4mg))
WEEK 1
With things getting so bad, my Mum was calling anyone who could help us and my GP told us to go back to the half dose, adding Lorazepam to help with the overwhelming anxiety (which apparently not uncommon when taking Bupropion).
At this point, I’d basically stopped getting out of bed, only getting up to have a shower and try to eat something before going back to bed. My anxiety (including racing thoughts, which I’ve only had a handful of times) was so bad and so overwhelming that I just couldn’t engage with anything: everything made my anxiety worse. It messed with my sleep even more and I barely ate at all; just the thought of food made me incredibly nauseous. I had meltdowns and I self harmed (which didn’t actually make me feel any better) and just being up in the daylight made everything so much heavier so I stayed hidden in my darkened room. I was beyond miserable.
Halfway through that week, the Crisis Team (or Assessment and Treatment Team as I believe they’re formally called although everyone we spoke to called them the Crisis Team) came out to see me. As nice as they were, I’m not really sure what the point of it was. The guy wanted to make sure I was eating at least a bit; he wanted to know about my anxiety and depression; he wanted to know whether I was having thoughts of self harming and suicide, although he didn’t ask if I was planning on acting on those thoughts. And then he rambled a bit about me being monitored over the medication change. I’m not sure what good that would do. I’ve changed medications so many times now; I’d just be doing what I do every single time but with someone coming to see me everyday. How was that supposed to help? What was that going to achieve? They offered to refer us to one of their psychiatrists, which my Mum asked them to so so that we could find out whether, at this point, there was any point in continuing with the Bupropion or whether I should start coming off it officially. As I said, they were nice but it was a pretty frustrating and upsetting experience and I just wanted to cry. I wrote in my diary afterwards: “Oh my fucking god, I can’t keep feeling like this every day, over and over again. It just makes me want to tear my hair out and rip my skin off and scream until my throat tears.”
Over the rest of the week, I continued to sleep badly and struggle to wake up. I lay in bed all day, my brain just spinning out of control: my thoughts felt very chaotic and it was all just big, overwhelming feelings that I couldn’t make sense of. I felt like I was losing control of my mind – like I was just a spectator – and I felt like I couldn’t breathe. And I couldn’t stop crying. I was depressed, anxious (by the end of the week, I was up to 4mg of Lorazepam daily – prompted by calls to 111 and then my psychiatrist – although I was still paralysingly anxious), terrified, miserable, and exhausted: those seem to be the words I wrote down the most. Eating was an ongoing struggle, although the nausea had finally dissipated (for the most part).
After speaking to my Mum, my psychiatrist recommended I come off the Bupropion and, with my depression so bad, go back to an MAOI antidepressant since we’ve had the most success with them. I wasn’t thrilled by that plan (I’m still not wild about it) because the Phenelzine isn’t great, plus it massively limits the options for ADHD medication. But there don’t seem to be any other available options so I just went with it. With the two week wash out period, I didn’t have to make the decision straight away.
WASH OUT
WEEK 1 (20mg Propranolol + 4mg Lorazepam)
My sleeping schedule got worse: it was taking longer and longer to get to sleep until I was eventually drifting off at around five in the morning. That, of course, meant I was waking up later. I didn’t really mind that: I didn’t really want to be awake anyway and being awake in the dark didn’t feel quite as difficult as it did in the daylight hours. I did get up each day – to shower, to try to eat – but it was a miserable experience that usually resulted in tears. I felt completely overwhelmed and just didn’t know what to do with myself but I was still restless and felt like I was constantly on the verge of a meltdown. Even though I wasn’t doing anything, I was completely exhausted, which just made the inability to get to sleep that much more frustrating.
I had periods of intense anxiety but for the most part, the depression was overwhelming and suffocating. I felt separate and disconnected from my life, and like I couldn’t get back to it. I felt completely hopeless and the suicidal thoughts continued. I was completely miserable.
WEEK 2 (20mg Propranolol + 4mg Lorazepam)
I was constantly exhausted, barely eating and my sleeping just kept getting worse, getting more screwed up and out of sync. I took sleeping pills, I tried every strategy that’s ever worked, every possible combination… but I just couldn’t get to sleep; it just got later and later until I was going to sleep at eight in the morning. It was miserable. I was miserable: I was in tears multiple times every day; I was incredibly anxious (I’m not convinced the Lorazepam was doing anything); I was deeply depressed and consistently having suicidal thoughts and thoughts about self harming (which I did act on although it didn’t make me feel any better). It was the worst I’d ever felt. Everything just felt impossible, overwhelming and hopeless and I just didn’t know how to act like that wasn’t how I felt. It was all too much and I just didn’t know what to do with myself: I couldn’t engage or connect with anything. Everything felt wrong and uncomfortable and sad.
It’s a really hard state of mind to describe so I thought I’d include some of the things I wrote in my diary during the week:
- “I hate being in my own brain.”
- “I feel like screaming and tearing my face off and breaking things.”
- “I feel like I’m constantly on the edge of a meltdown.”
- “Everything about all of this medication stuff feels hopeless. It just feels like this is forever because I either have to choose between my depression and my ADHD, which one to treat, which one is worse. I don’t want to be me. Why couldn’t I have had a brain like everyone else I know? I feel so desperately jealous of people who’ve never struggled this way; I’m even jealous of those who have struggled but can take medication to manage whatever they need to manage, lead the lives they want to live, be functional, be happy… Apparently, I can’t. There’s always going to be something wrong, something pressing down on me and making life harder. It feels like everything could shatter any second and I’ll end up in a meltdown that I’ll never be able to get out of.”
- “I miss me. I miss who I was before all of this. But after everything, I don’t know if it’s possible to get back to that person. That person doesn’t feel like me anymore. I feel trapped. I hate being me.”
- “I feel like I’m being forced to choose between my depression and my ADHD and I’m just so angry that it’s almost ten years later and I’m still dealing with this; I’ve tried almost twenty different medications to manage it all and yet, I’m still in the same place. It’s still so difficult.”
So it was a rough week after a rough few months. The wash out period is up but I still don’t know what to do. There are so many reasons why I don’t want to go back to MAOIs – messy, convoluted reasons that I don’t even know how to put into words – but there doesn’t seem to be another option. I still don’t want to take them though. I feel completely stuck.
This was several weeks ago now and as much as I didn’t want to go back to an MAOI, I had a bit of a breakdown and started taking a new antidepressant, Moclobemide. I was desperate. And, as I said, things aren’t great but they are better than they were. I still feel very conflicted about what to do around the medication and the clash between the medications for each condition but at least I am feeling clearer and not so completely overwhelmed.
Finding Hope 