Finding HopeA Moment of Modafinil
Posted on April 23, 2022
TW: Mentions of suicidal thoughts.
In hindsight, I’m not sure this was the best moment to try out a medication that’s supposed to help you stay awake, given that it was going up against jet lag, lack of sleep, exhaustion, and the general sleepiness caused by my antidepressants. But I was desperate to feel something other than drowsy and trying out the Modafinil was the only option to hand. So, for a week, I took it twice daily – per the instructions of my prescription – and I thought I’d describe the experience, just in case it might be useful to somebody.
For most of the week, I took the 8am pill and then went straight back to sleep, only waking up again to take the 12pm pill. I was just so tired; I couldn’t wake up, no matter how hard I tried. I did manage to get up earlier on a couple of the days but regardless I only felt actually awake for a couple of hours before I started feeling sleepy again. I was constantly exhausted and fell asleep, sometimes multiple times in a day, regardless of how hard I tried to stay awake. Red Bull didn’t seem to help much. The first night, I never went to sleep at all – despite how tired I was – but after that it was all I could do to stay awake for more than a couple of hours at a time.
I haven’t had much appetite since taking the ADHD medications but I was suddenly very nauseous again with absolutely no interest in food. I have to say, it’s an improvement on the medications that make my want to eat constantly but it’s still not pleasant.
My mental health took a hit too. I was very anxious but there were multiple external factors to consider so I tried to tough it out but it just kept getting worse. Within a few days, I was feeling incredibly overwhelmed and fragile and then, on top of that, I started to feel more and more depressed. By the end of the week, I was having suicidal thoughts again. I stopped taking them at that point. It said that, if it causes depression (or perhaps made my existing depression worse, I don’t know), to stop and talk to a doctor and maybe I should’ve waited to stop until I could talk to my doctor but it was the long weekend and I just couldn’t face feeling like that any longer. So I stopped taking them and sent my doctor an email about it. I’m hoping for a proper appointment with him soon.
I was only taking them for a week but they didn’t seem to have any positive affect at all; I was still employing extra strategies etc to try and stay awake, something I would’ve hoped I wouldn’t have to do with the Modafinil. Having said that, I was only taking 100mg and I’ve read that most people need to take 200mg to feel the effects but I’m worried that taking a higher dose would make my depression even worse and that’s not something I can be okay with.
For several days after, I was sleeping long nights and most of the day; I was probably sleeping somewhere between sixteen and eighteen hours out of every twenty four. I’ve emerged from that at this point but I’m still incredibly sleepy. The quest for a non-drowsy life continues.
World Autism Awareness Day – Inclusive Quality Education For All
Posted on April 2, 2022
Given that the theme for this day was only announced by the UN a week or so ago, this isn’t as prepared as I would’ve liked; I would’ve liked more time to work on it, to organise my thoughts on the topic. ‘Cause this week has just been chaos, both in reality and emotionally: I had to leave my cats at a cattery, pack for my trip to the US, fly to Boston, go to a concert there, and then fly to Nashville, where I’ve been super busy. And all of that has been very stressful. So it’s not ideal but I’ve done the best I could with the time and emotional energy I’ve had.
Given that the theme set by the UN this year is ‘inclusive quality education for all,’ I thought I’d write a bit about my experience in education as a young autistic woman. I wasn’t diagnosed until I was twenty so, while my years in school were obviously affected by my being autistic, we didn’t know that that was the cause.
During primary and secondary school, things were pretty okay. I loved learning so that was never the hard part for me. I was shy – painfully so (P.E. and drama classes were cause for weekly distress) – and I was exhausted by being in school but otherwise I think it was fairly normal. For the most part, I was a high achiever: I learned to read and write well very quickly; I was top of the class in most subjects (some of which I tried hard in but some of which I seemed naturally good at); I was in my school’s ‘gifted and talented’ stream for multiple subjects. I was left to myself a bit, I think; I guess there’s a logic to the idea that you don’t need to help a smart kid be smart but then, in the long run, said smart kid doesn’t learn how to learn, if that makes sense. I picked things up very quickly so no one ever really taught me how to study; once I got to the harder stuff, I started to struggle.
Things were fine until sixth form college, when that problem really kicked in. But still, I pushed through: I worked harder, I exhausted myself further. But I thought there was something wrong with me. I thought I was stupid, that I was missing something; it never occurred to me that something like ASD meant my brain processed information differently, that the combination of the undiagnosed ASD and my all-consuming attempts to keep up were having a detrimental affect on my physical and mental health, or that I wasn’t being supported as I should’ve been. I had individual teachers who were kind and understanding but the institution itself offered no support at all. By the time I was taking my A Levels, I was so burned out and worn down that I was right on the edge of a breakdown. I ended up taking a gap year between the end of sixth form and the beginning of the university as I tried to get a handle on my spiralling mental health.
I went to the same university for both my BA and my MA (although with a few years in between), mostly because it allowed me to pursue my greatest special interest (songwriting) and study it in depth. I was diagnosed with several mental health problems during my first year of the BA and then ASD between the first and second year, which was when my university became more open to supporting me (it is worth pointing out however that I had to fight for almost every step because they simply didn’t understand why I needed what I told them I needed). They had what was called a Student Support Agreement that was supposed to be sent to all of my tutors before classes started so that they knew the difficulties I struggled with and what sort of accommodations I might need but I’d often introduce myself to a tutor and they’d have no idea what I was talking about.
In general, most of my tutors tried to understand; they were as accommodating and supportive as the university would allow them to be. They wanted to know; they wanted to understand; they wanted to make things easier for me (obviously not easier than it was for everyone else but to put me on the same level as my peers so I wasn’t disadvantaged). And while, I don’t mind – and even at times enjoy – educating others on Autism, it took a lot of energy to have those conversations at the beginning of every semester, sometimes multiple times. (It’s also worth pointing out that having those conversations can be really enjoyable when the person wants to learn but it can be a totally different story when you’re having those conversation out of necessity and the person isn’t really engaged.) It wasn’t until the last semester of my Masters that I worked with a tutor who was neurodivergent herself and it was a completely new way of experiencing education; feeling so understood and accommodated was amazing and that was definitely reflected in my work.
But while the individuals were open, for the most part, I felt like the institution wasn’t particularly interested in my experience as a neurodivergent student. It’s a small school so there were never that many of us (or there weren’t when I last spoke to them about it) because there weren’t that many of us in general and I don’t think they saw us as worth investing in (as in, it wasn’t financially worthwhile to educate all of their tutors on Autism and other neurodevelopmental conditions for just a handful of students) despite the benefits it could have for all of the students and for the tutors themselves.
Having said that, when I started the Masters I was introduced to the person brought in to support students with Autism and ADHD. I was feeling really optimistic about going back to uni – that progress was being made – but I hadn’t even known her a month when her actions triggered the biggest meltdown I’d had to date in the middle of a busy London train station, which was a traumatic experience. After that, I never heard from her again and found out from someone else that she’d transferred me back to Student Services without her ever saying anything to me. And all of that was with her training and experience. So I didn’t have a lot of faith in their efforts after that. I’m still talking to them though and I hope that I can still help them make the university experience better for neurodivergent students. They could – and they should – be doing more. With so many neurodivergent students dropping out of university, more needs to be done and I think the starting point is teaching the teachers.
I think it’s worth pointing out that I am in a fairly privileged position: I’m from a white, middle class family with a good support system and I went to good schools throughout my time in education. I was also able to go to university and had support from home that allowed me to do that in the way that was best for me. I was (and am) very lucky. But despite all of that, education has been an incredibly distressing experience.
Ultimately, everyone in education needs to know more about Autism and other neurodevelopmental conditions; knowledge and understanding is the only way that the education experience is going to get better for neurodivergent students. All of these institutions have been built on ableist foundations and I don’t have the answers on how to fix that but I do know that, without the knowledge, nothing will ever change.
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.
Finding Hope 