Posted on June 12, 2021
It’s been a while since I last talked about my ADHD so I thought it was time for a little update. A lot has happened since I was diagnosed, some of which I thought might be worth sharing…
It was a lot to process that I did my BA and have been doing my MA with undiagnosed and unmanaged ADHD but the diagnosis had me looking back over the last few years and a lot of things started to make sense: why I’d excelled in certain areas and struggled desperately in others. Part of me was impressed with how I’d done, factoring in this new obstacle that I’d been unknowingly battling against, but on the other hand, it makes me sad that I’ve had to, you know? It makes me sad that I’ve had to work against my own mind all this time without anyone noticing or supporting me – in this sense, at least. Life could’ve been so much easier.
And now I have to finish my Masters unmedicated.
Because I take Phenelzine for my depression, there’s the risk of interactions with stimulant-based ADHD medication so I can’t take those; both medications have the potential to raise a person’s blood pressure and together, that could be very dangerous. However, given the extreme drowsiness I experience as a side effect of the Phenelzine, I can’t take a non-stimulant medication either due to the high chance that they’ll add to the drowsiness. It’s hard enough staying awake and (somewhat) focussed during the day. I can’t afford to make it worse, especially in this final module of my Masters, the one I’ve been looking forward to since I started the Masters. So it looked like a dead end. But I wasn’t giving up at the first hurdle so I did what I always do: I started researching.
After a bit of searching, I found a research paper about a series of studies done, combining medications when traditional routes failed to work. One of those cases detailed a man who only responded to an MAOI (which is what Phenelzine is) and a stimulant-based ADHD medication. He had to continuously monitor his blood pressure but had no problems and continued on the two medications indefinitely, which allowed him to live a normal, productive life. That seemed very promising, as a starting point for discussion at the very least, so I sent it to both my psychiatrist (who’s been managing my medication for years now) and the ADHD specialist.
My psychiatrist was willing to try, provided I was diligent about checking my blood pressure. Despite our initial ups and downs, we have a really good relationship – and we have had for a long time now – and he always takes my thoughts, opinions, and research into consideration, which I really appreciate even if he ultimately opts for a different approach. So that felt good, like a step in what felt like a positive direction.
We didn’t get a response from the ADHD specialist for weeks. To begin with it was just frustrating but as time went on, I started to swing between despair and anger. I felt like I’d just been abandoned, dropped without a word (something that’s unfortunately happened enough times that it’s become a big trigger for anxiety attacks, episodes of depression, and even autistic meltdowns, depending on the situation); sometimes it feels so upsetting that these medical professionals can just go home at the end of the day and leave all of the struggles of their patients/clients behind while we all have to keep living (and suffering) from them. I know it’s not that simple – that they don’t just stop caring, that they can’t and shouldn’t have to work ridiculous hours – but in my desperate moments, in situations like this, it feels hard to feel supported, to believe that they do care, that you’re not just another file rather than a person struggling through each hour.
After some extra complications due to communication problems, we finally heard back and she was saying a categorical no, having had previous patients respond badly to the combination. While I can understand that, I found it frustrating that she wasn’t even open to trying it. I’ve always responded unusually to medications (proven again and again by my experiences with more than fifteen medications/combinations for my depression – the only one that’s worked is one that’s rarely used) so I was frustrated by the brick wall approach she was taking. My psychiatrist was still open to trying and said he’d talked to her about transferring the medication aspect of managing my ADHD to him since he’s been treating me for so long and has a detailed understanding of my history. But she said no.
So that’s it as far as I can tell. Unless I change my antidepressant, (I have to point out again) the only one that’s helped me, I can’t take medication for my ADHD. It’s essentially come down to choosing which of the conditions to treat, my depression or my ADHD, which just makes me feel so upset and frustrated. Treating my ADHD could make a huge difference in finishing my Masters but I’m getting blocked at every turn. It’s almost worst now than before I knew about the ADHD. Before, I was struggling; now, I’m struggling and I know why but I can’t do anything about it. The whole situation makes me so angry, so angry that I couldn’t do the most recent online appointment. I wasn’t in the right headspace and I doubted my ability to be receptive when my emotions were so all over the place.
My Mum took the meeting but it hasn’t changed anything. I’m still not getting any treatment, any support. I feel like I’ve been given this great weight to carry but abandoned to carry it without help or advice. I don’t know what to do. I don’t know how to move forward. I feel like I’ve been let down by someone who’s job it was to help me. Again. It’s upsetting and exhausting and stressful.
I don’t say these things to encourage a mistrust of doctors or because I regret the ADHD diagnosis. I just need to be honest – for the sake of my own mental health – and while I generally try to see the positive, sometimes the situation just sucks. It’s just bad and hard and makes a mess of you.
Category: adhd, anxiety, autism, depression, diagnosis, medication, mental health, music, research, treatment, university Tagged: adhd medication, adhd support, anti-depressant, antidepressants, anxiety, attention deficit hyperactivity disorder, depression, inattentive type, masters degree, medication, mental illness, neurodivergent, neurodiverse, neurodiversity, phenelzine, stress, stressful, treatment, university
Posted on May 15, 2021
On the 12th of May every year, the Mass Observation Archive asks people to keep a diary for a day in order to capture the everyday lives of people all over the UK. There’s usually a suggested loose theme; for example, last year, it was suggested that diary entries not focus on exactly but highlight the pandemic and the effect it was having on our lives. This year, the website suggests that “diaries can record 12th May and reflect back over the past year and look forward to the future and life beyond this year.”
I’m a long time diary writer and have been for years so this project was an exciting discovery. I love the idea of so many people’s experiences stored in one place, the idea of collecting as many versions of one day as possible and trying to build the fullest picture of it. So, for the last couple of years, I’ve looked forward to this day, to writing about it, and to sending it off to the Mass Observation Archive. But I also like posting the day here too.
Some important things to know before reading this: I’m autistic and struggle with Treatment Resistant Depression, Generalised Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Personality Disorder. I was also recently diagnosed with Hypermobile Ehlers-Danlos Syndrome and Attention Deficit Hyperactivity Disorder (Inattentive Type). All of the symptoms get worse under stress; I’m beginning the homestretch of a Masters Degree in Songwriting and while things with the pandemic seem to be improving (the vaccines, the lockdown slowly lifting, etc), it’s hard to let go of so much ingrained fear and hard to know what the ‘right’ level of fear is. So I guess I’m still struggling with the pandemic, although not in the same way as I was struggling with it last year.
What I thought was going to be a relatively chilled out day spent at my laptop, working on stuff for the final Masters module, the Major Repertoire Project, and catching up on all the work I’d planned to do when I got hit with last week’s killer migraine (it lasted six days and involved paramedics being called to the house). But then, last night, I got an email from uni with the upcoming events and realised that the upcoming Song Sharing Session was today, this afternoon. I haven’t been back to uni since the first lockdown, working from home as an online student, so going back – and going into London – felt like a real big deal. But instead of spending hours ruminating on whether or not I should go, letting my anxiety make the decision, I decided that I wanted to go and so me and my Mum started making plans to make it possible. As things go, it felt as safe as anything can be right now: Mum had said she’d drive me there and back, I’ve had my first vaccine, and no one can enter the building unless they’ve tested negative. Mum ran out to get to COVID home tests and after that, all there was left to do was play through my songs to be as ready as possible.
Maybe because my subconscious was processing the idea of going to London, I didn’t sleep well and struggled up, later than I’d planned. And it was kind of chaos from that point on. I had a problem with my computer that sent me into a panic. I managed to sort it out but the anxiety of the situation wasn’t a great way to start the day. And then, before I could even make it to the shower, one of the cats got stuck in the attic and since we were going to be out for most of the day, we had to get her down before we left in case she couldn’t figure out how to do it herself or one of the others decided to climb up too. Even with treats, it took ages to get her down and then settle all five of them.
I did my Lateral Flow Home Test and had a shower, got dressed, and did my hair and make up while it did it’s testing thing. It came back negative, which was great obviously, but trying to register the result and get the confirmation email that would allow me to get into the uni building was overly complicated and much more time-consuming than described – particularly frustrating as I was trying to get out of the door. I’d wanted it to be as up to date as possible and suddenly it was making me really late. So that was just more stress on top of an already stressful morning.
The rush out of the house and the stress of going back to uni for the first time in so long made me nauseous and dizzy and I spent most of the drive breathing deeply and trying to keep my mind from spinning. My Mum had very kindly said she’d drive me to London since I’m still feeling very wary of public transport, especially the underground, so we talked and listened to music and by the time we pulled up outside the uni building, I was more excited than nervous. It felt so strange to be back, like it had only been a couple of days and a century at the same time since I’d last been there.
I’d expected to feel nervous there – I mean, I’ve been nervous everywhere but my house since the pandemic began – but given the strict safety procedures, I felt really safe and relaxed. It took me by complete surprise but it was so nice and being back there kind of felt like coming home; I have been studying there, on and off, for the last six years after all.
Slowly, the ten of us that had turned up to the session congregated and we were all just so excited, like a bunch of seven year olds at a birthday party. Some of us had never actually met each other in real life – as a fully online student, there was only one person I’d met before we went into lockdown – so it was very exciting to finally meet these people who I’d only ever seen on a screen. Having said that, it was somewhat weird to be saying, “It’s so nice to meet you!” to people I’ve had hours of classes, discussions, and laughs with.
We were all hanging out and chatting, catching up since most of us haven’t seen each other – even on a screen – for several weeks, when Sophie, our tutor and course leader, showed up to run the session. She was as excited to see us as we were to see her. It was so lovely to see her: I’ve known her for almost seven years and she’s been so supportive, both of my songwriting and of me as a person. So, yeah, I was super pleased to see her in real life again.
We got ourselves in a circle and had a bit more of an official catch up before taking turns playing songs and talking about our projects. I hadn’t heard music from most of the people there so that was really cool and inspiring and everyone’s working on such fascinating projects. I kept finding myself volunteering as a potential cowriter over and over, despite the voice in my head saying, “You already have so much to do!” The projects were just so fascinating.
I got to play two songs: the first was the song that really got my project rolling, a song I wrote a little over a year ago to a family friend who also has Autism; the second is a new song about my experience of OCD. The newer one was scary to perform but it seemed to go down well, which was reassuring. The whole session was just so fun and so good for me, for my mental health. I wanted to stay and hang out with everyone, even after the session was over, but since my Mum was driving me home, it wasn’t fair to ask her to wait any longer. So I said my goodbyes, made plans to meet up again, picked up my uni’s own facemasks (I mean, that’s the weirdest school merch I’m ever gonna get), and headed out to find my Mum.
On the drive home, I slowly came down from my adrenaline high until I was utterly exhausted. I did manage to catch up with my Mum and then two of my parents on the phone – they wanted to know how my first time back had gone – before I completely ran out of energy. It felt like a very long journey but we finally drove back into Brighton.
We stopped quickly to see one of my parents and her finally finished garden office. It was really nice to see her – we’ve all been incredibly busy (or dealing with an epic migraine) – and her new office looked gorgeous. It could be pretty cool to have a studio like that one day…
Mum and I finally got home, fed the hoard of hungry cats (who seemed to think they’d been abandoned), and crashed in the living room, continuing our rewatch of Grey’s Anatomy. I tried to work on a post for the blog but I was so tired and so drained that I barely managed a handful of sentences in the few hours I sat there. Eventually I just gave up and went to bed but it was still a struggle to sleep, just as it normally is; my thoughts started racing and I just couldn’t grab ahold of any of them long enough to settle. I don’t know how long it took to get to sleep but it was definitely after 1am, possibly even later.
So much has changed in the last three hundred and sixty five days. I look back at my last Mass Observation Day diary entry and my life is so different, in so many different ways. Last year, I was so scared, so terrified that I felt like I couldn’t breathe. I couldn’t do anything because I was so scared. All I could do was sleep and bury myself in the familiar worlds of Fanfiction. I’m still scared but I’m also happy, at least some of the time. I have bad days but I also have good days, even really good days, and just that is a huge deal. I’m writing a lot, researching for my project, and facing my fears around the pandemic. Sometimes I can’t believe that the last fifteen months have happened but I only have to look at myself to see that they did: I’ve been through a lot and changed so much. And that’s just looking inwards. Looking outwards – at people I know, the communities I’m a part of, the world at large – is far too overwhelming to sum up right now in one day’s diary entry.
If you’ve been keeping a diary or still want to jot down some thoughts about the 12th, I would really encourage you to do so and send it to the archive. The page is here, in case you’d like to submit or learn more about this and their other projects.
Category: about me, animals, anxiety, covid-19 pandemic, emotions, event, mental health, music, ocd, sleep, university, writing Tagged: anxiety, anxiety disorder, blog writing, cat, cats, coronavirus, covid test, covid-19, cowriting, diary, diary writing, family, family of cats, friends, lateral flower home test, lockdown, lockdown 2.0, lockdown 2020, lockdown 3.0, major repertoire project, mass observation, mass observation archive, mass observation day, mass observation day 2021, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, migraine, migraines, pandemic, pandemic 2020, pandemic anxiety, part time masters student, sleep, songwriter, songwriters, songwriting, stress, student, university
Posted on January 9, 2021
So that’s it. The third semester of my Masters is officially completed. As I write this, I have just submitted my assessment work and have a week before the next semester starts (online, due to the current number of COVID cases). I have some reading to do for the next module but before I dive into that, I just want to reflect on the last semester, the ups and downs, and all that I’ve learned.
It began with a great deal of stress, and long before the semester was due to start. At the beginning of the pandemic, I’d said I absolutely didn’t want to do my course online and would defer if that was going to be the case. But as the new semester drew closer, I got more and more anxious. I didn’t want to defer but I also didn’t feel safe commuting to and then through London for two hours of classes a week so, after many hours of talking with my family (and many tears), I decided that the best option was to attend as an online student. It was a sad decision to make because I’ve always loved the group dynamic of my university classes but it just didn’t feel safe or responsible to attend in the way I’d have to.
And then, in the week or so before classes started, there was a great deal of stress around getting the right timetable as an online student: conflicting information, the classes not showing up on my online timetable, and so on. When things were already so stressful (the anxiety about the pandemic aside, I was really nervous about whether or not I was mentally up to doing the module with my mental health so fragile), this just triggered a series of really terrible meltdowns. It was a horrible and exhausting way to start the semester, especially the one I’d always been most anxious about: Musical Language in Songwriting. Music theory has never been a strong area of mine so the idea of experimenting with these concepts was very daunting.
While this was very distressing, I don’t want to point fingers or place blame. These are hugely difficult times and no university – no institution – is perfect, even when the world is running according to what we consider to be normal. So it’s not fair to expect everything to run smoothly. And now that I’m on the other side of the semester, I can only sing the praises of my tutors: over and over, I’ve seen just how dedicated, hardworking, passionate, and supportive they are. There have been bumps in the road, of course, but even with the sheer amount of stress they’re under – and that’s just the stress I’m aware of as a student – I’ve been consistently met with warmth, thoughtfulness, and understanding. And I’m just so beyond grateful for that. I couldn’t have completed this semester without their support.
I wrote about my first week back (here) but to summarise, it was a challenge. My uni were using a blended model of teaching so the lecture was online and the workshop was onsite (but as an online student, I was looped in through the online learning platform). The lectures were straightforward since we were all online, and productive once we got into a rhythm and stopped accidentally interrupting each other. The workshop, however, was more complicated: between not physically being there and only being able to communicate through the tutor’s laptop, plus not being able to see or really hear my course mates, it was very difficult. But I spoke to my tutor after the class and the next workshop was better.
I’d thought we were making progress but then suddenly, between week two and week three, I was moved to a new workshop group, an online group made up of just the online students. That really threw me; the constant uncertainty was doing a real number on my mental health. I was really struggling during this time: my anxiety over the pandemic, the expectations of the course, and being able to do well in the module was incredibly high; I was hugely frustrated with the whole situation; I was feeling overwhelmed by my depression, my low energy levels and side effects of medication… I was constantly in tears, constantly having meltdowns.
But slowly, as things started to settle, my mental state started to settle too. I had a really positive meeting with one of my tutors where he went through the learning outcomes and grading criteria and generally what makes a good assessment portfolio. I’ve found that having a meeting like this early on in the semester both helps me to work on the assignments more effectively and avoids unnecessary anxiety. As I said, I felt really supported throughout this module and I’m so grateful for that, both in terms of the module itself and in terms of the broader picture.
The assignments were challenging and definitely interesting, including a reimagination of a cover, a reimagination of an original song, and a brief that still makes me shudder: a song in an uncommon mode, using both 5/4 and 7/4 time signatures, with extended chords and an example of chromaticism (I struggled particularly with this one). We also had to consider the arrangement of each songs and to an extent, the production. The briefs definitely stretched me and prompted some very interesting songs, many of which I absolutely wouldn’t have written if I’d not done the module. I don’t know if I’ll ever do anything with them but I definitely learned a lot from writing them. Having said that, I did spend a lot of time feeling very unsure of myself and the quality of my work, both in terms of whether they were actually good songs and whether they were fulfilling the grading criteria.
About halfway through the semester, my course mates from the year before (those who’d done the Masters full time and completed it in one year rather than two) graduated and I joined them for the online ceremony to celebrate them and their achievements. We were all disappointed not to be able to get together to celebrate properly but hopefully that plan is simply postponed rather than cancelled. They all deserve it and it would be so lovely to see them again.
Six (out of twelve) weeks in, I was exhausted all the time. I was also still struggling with the nerve pain in my hand – the pain that I’ve been experiencing since the middle of the first lockdown – which was only getting worse, making it even more difficult to play instruments. I was still waiting for my rheumatology referral – that didn’t come through until the last week of the semester and even now, they still don’t know what the problem is.
The latter half of the semester was much more focussed on the assessment, at least it was for me. I worked on the songs I’d already written during the module before taking them into class again for more feedback so that I could get them as good as possible for submission (although I did impulsively write a rap that ended up being part of my portfolio). I also worked on the other part of the assessment: a short essay, analysing one of the songs I’d written and how I’d employed different aspects of musical language. I worked as hard as I could, determined to have at least most of the work done by Christmas so that I could have a break of some kind before the next semester started, unlike last year when I had to work straight through the Christmas break.
Despite the meeting early in the semester, I found it very difficult to judge whether I was doing ‘well enough.’ The learning outcomes and grading criteria felt incredibly vague and therefore not at all Autism-friendly, causing me a lot of anxiety. I mean, it’s Masters level and they have to cover all of the different styles of songwriting on the course so I do understand it but as an autistic person, it’s been one of the hardest parts of the course (uncertainty being a common area of difficulty for autistic individuals). I had multiple conversations with my tutors about it and although they noted it, it’s not like they could change them in the middle of the semester. I guess we’ll see if anything changes over time. I did get useful feedback on my songs and essay during those conversations but I still have no idea what to expect grade-wise.
By the end of the semester, I was almost done: I was making final edits to the songs and trying to cut down the word count of my essay. But the last week was hectic to say the least. I had a really lovely last day of classes – both groups I was a part of were so positive and fun to be a part of – and then a final one-on-one session with my tutor for any last feedback before the deadline (the first day after the Christmas break). That was really useful, especially as I was so close to finishing everything. I also had a meeting with my tutor for the next semester, so that I could prepare for it or, at the very least, get my head around what the expectations of the module were. Again, another attempt at reducing unnecessary anxiety, plus it was really nice to see him again; he’s taught me on and off since my first day on the BA (he actually auditioned me for the BA!) and he’s such a great teacher. I feel like he gets me and my approach to songwriting and I’m really excited to have him as a tutor again. And the semester itself ended for me with a meeting on behalf of ICMP where a group of us (students from different courses) spoke about our experience with the university. That felt good; I only ever want to leave things better than I found them and that meeting felt like an opportunity to do that. It’s re-inspired me to keep trying, even if I didn’t really need to be re-inspired.
I had one last session with Richard, sorted out a couple of technical issues with the tracks, and then I spent every day working non-stop. On Christmas Eve, I managed to finish everything. I was done – or had done as much as I could do without endlessly obsessing over every tiny detail – and could have an actual break between semesters. I really needed that and I had a good Christmas, despite everything going on. I wish I could’ve been with more of my family but we all recognised how risky that was. So we had a truly bizarre and hilarious Christmas Quiz and Zoom call and then dinner within our bubbles; it wasn’t perfect but I think we truly made the most of it and I really enjoyed it, even if there were difficult moments.
After a pretty restful break, I logged onto the student gateway to upload all of my work on New Year’s Day, several days before the deadline. But, for some unknown reason, the pages weren’t set up in a way that allowed us to upload the work required for the assessment. I had multiple meltdowns over it and after a handful of emails to various tutors, I was given an alternate way to submit. I shouldn’t really be surprised: this has happened multiple times and with the deadlines always on the first day back, there’s usually no one to contact for help. I was lucky to have had a tutor respond. Fortunately, it did get fixed on the morning of the deadline and we were all able (and asked) to submit. They usually fix it in time but it’s very stressful every time.
As I’ve already said, I’d been dreading this module but I ended up enjoying it a lot than I’d expected. It was still stressful but the tutors were incredibly supportive and my course mates were engaged and encouraging. It felt safe to bring in whatever I’d written, even if I really wasn’t sure about it (the rap, for example). It is hard being part time though, just as much this year as it was last year: for me at least, I’ve always felt ‘other’ to a certain degree, excluded (unintentionally) from the main group, the full-timers. Rather than being part of two years worth of Masters students, I’ve just felt not quite a part of either. It’s hard to explain but I’ve just never felt truly part of the course, like I’m always missing out on something because I’m only there (or ‘there’) half of the time. Does that make sense? I’m not even sure. Being part time has definitely been better for my mental health but it has made things more complex socially.
But ultimately, the module has been a good experience (although I’m sure my perspective on it will be affected to a certain degree by the grade I get). I think the biggest thing I’ve learned, or the skill that has developed the most, is how my decisions serve the song I’m writing; it’s made me much more conscious of my choices and it made me realise how much I already knew about the techniques we were using but just using them instinctively rather than deliberately. So that was surprising but it has opened up doors in my songwriting.
It was also exciting to start looking ahead to the next two modules: we had extracurricular sessions where students from last year presented their final projects to give us an idea of what that last module would be like. It was reassuring because it made the whole thing feel much more clear and less like a huge, intangible, overwhelming pile of work. Now it feels like an exciting challenge and I can’t wait to get started, regardless of the stress and anxiety involved.
Category: anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, holidays, meltdowns, mental health, music, university Tagged: anxiety, arrangement, asd, assessment, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, autistic student, cfs, christmas, christmas break, christmas holiday, chronic fatigue, chronic fatigue syndrome, coronavirus, covid-19, depression, essay, essay writing, fatigue, graduation, graduation ceremony, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, meltdown, meltdowns, mental health, mental illness, music language in songwriting, music theory, musical arrangement, musical language, online classes, online learning, online university, pandemic, pandemic 2020, pandemic anxiety, part time masters student, part time student, songwriting, stress, tutor, tutors, university
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…