Posted on March 21, 2020
I know that everyone is talking about this right now and I’d rather not because it makes me so anxious but there are a couple of things I want to say and then hopefully this blog can go back to being a Coronavirus free zone. I know it’s scary for a lot of people and there’s a lot of information and advice being thrown in your face so I just want to document my experience so far and write about the things that are helping me to minimise my anxiety.
I think the first thing to say is that I hate change, as I know many autistic people do. I especially hate sudden change because it gives me no time to process what’s going on, which causes me a lot of anxiety. It also messes with my emotions, leaving me feeling unsettled and sick and empty and twisted up. I can’t really explain it properly; it’s such a specific feeling.
The first big thing to happen was Tin Pan South, the festival we were going to Nashville for, was cancelled, which meant we had to decide whether or not still to go as it could be more expensive to cancel our flights. But as the news from other countries got more serious, we decided that we didn’t want to go and get stuck there so we had to make the difficult decision to cancel. I was gutted. I am gutted (we were supposed to be flying out today). I was so looking forward to the trip and to the festival that, not only was the change stressful, it was very distressing too. And then, of course, there was the stress of getting the money back. With the travel ban, we have since managed to get everything refunded or in credit but it was incredibly stressful, in addition to all the stress coming from the news about the virus. I have family who would be in serious danger if they caught it so, even though I’m in much less danger, I was terrified of unknowingly transmitting the virus to them. I still am so we’ve all been self isolating apart from essential trips like picking up extra medication and so on.
And then, suddenly, everything started happening. All of the concerts I was going to got cancelled, which isn’t a big deal in the grand scheme of things but they are the bright spots in my life that get me through when I’m in a bad place, which I arguably am right now. So that’s been difficult, especially the suddenness, as I mentioned earlier. Then one of my best friends was suddenly on a plane home, which was very upsetting (although, of course, I understand and support her in wanting to be with her family); one minute we were making plans for the next day and the next she was messaging me from the plane. That change has been hard and I’ve cried a lot about it. Plus, just as I’ve started to get into the groove of going to therapy again, we’re having to switch to video sessions, which I thought I was fine with but turns out I’m struggling with. And then there’s just all the not knowing what’s going to happen or how long this is going to last. So there’s been a lot of change really fast.
I actually feel quite traumatised by all the changes. Stuff like this always messes with my head and with my emotions and I end up feeling like it’s causing brain damage, like parts of my brain are being permanently warped and will never recover.
The week after all of these changes happened (most of them happened over the weekend and into the Monday), I wasn’t going to go to uni. Many of my friends and classmates weren’t going, having gone back to their families abroad and within the UK, and I just couldn’t bear to be there and see it without them all with so little time to adjust. I just felt so unsettled and restless and anxious. I don’t think I’d’ve been able to concentrate if I’d been there.
My course discussed it through our WhatsApp group (we’re a small course) and ended up emailing our programme leaders to say that we didn’t feel safe and that we didn’t feel it was responsible for us all to be there, to travel in on public transport, and so on. Very few people went to the classes and I think it was later that day that it was announced that the course would be moving to online classes. I’m yet to see how smoothly that goes. They’re not moving our assessment deadlines, which many people are very upset about, something I definitely understand. There are a lot of reasons to feel an extension is necessary. My mind changes from hour to hour; I don’t know whether I’d want an extension. Yes, there’s massive anxiety affecting my life that makes it hard to work but at the same time, we don’t know how long it’s going to go on for and I’d rather just get the assessment over, if that makes sense. I don’t know. I don’t know what I want.
Me and my Mum – my household – are self isolating, apart from necessary trips out (getting the necessary supplies to stay in, getting supplies for the cats, getting what we need to allow us to work from home, and so on – making it possible to self isolate for as long as we need to). It’s weird: I usually spend days at a time inside but suddenly I’m really claustrophobic and restless and anxious and it’s been less than a week. I don’t know where that’s coming from. Maybe I’m just so full of anxiety that everything is making me anxious.
So, having said that, I wanted to list for you a few of the things I’m doing to try and minimise my anxiety:
If there was ever a time for looking after yourself mentally (and obviously physically), it’s now. I hope some of these tips are helpful and let me know if there’s anything that you find helpful in stressful times such as these. As I said at the beginning, hopefully this blog can go back to being a Coronavirus free zone after this post because I know it’s triggering for a lot of people, myself included. But if I find any helpful resources for getting through this, I’ll definitely share them because I figure we could all use all the help we can get.
Category: anxiety, autism, emotions, event, medication, mental health, music, school, sleep, therapy, tips, university Tagged: anti anxiety, anti anxiety medication, anxiety, asd, assessment, assessments, autism, autism spectrum disorder, autistic, autistic adult, change, coronavirus, covid-19, current affairs, dbt, deadlines, family, friends, global news, illness, masters degree, medication, mental health, mental illness, nashville, news, online classes, pandemic, routine, self isolating, sleep, sleep schedule, studying, therapy, tin pan south, tips, travel, university, working, working from home
Posted on March 7, 2020
So I thought it might be fun to document a week in my life, both as a person with mental health problems and Autism and as a person doing a Masters in songwriting. So recently, for a week (one of my more interesting weeks), I took notes on each day so this is those days collated, a week in my life right now.
My Monday started at home in Brighton (doing origami for the #30dayfeb) but I was hugely nervous (and excited) because I was playing my university’s songwriters’ circle that evening. And what made it extra special was that it was the LGBTGIA+ History Month Special. I proudly come from a proudly LGBT family and identify as queer myself, although that label is as far as I’ve gotten. When your mental health and Autism take up your whole life, there’s not a lot of time for figuring out your sexuality. I haven’t talked about sexuality on here much because I felt like I needed to know specifically what I identified as (gay, bisexual, pansexual, asexual, etc) before I said anything but now I’m thinking that not knowing yet is also important to talk about. I don’t want to do too much of that here though because I think it deserves its own post.
Anyway, I was nervous but also really excited.
I caught the train to London and the tube to uni where the songwriters’ circle was being held. I met Richard (Richard Marc, my best friend and writing partner) there and we practiced for a bit: we were playing a song we’d never performed before. So we worked that out, ran through it until we were confident with the performance, and then went to get food before going back for our soundcheck. That went well and we met everyone else who was playing; they were all absolutely lovely.
The special guest was an alumni, RIS, described as: “an up-and-coming Sofia-born electropop artist based in East London. The queer singer-songwriter’s brooding vocals bring euphoric melodies to life over dramatic alt-pop tracks, rich with sizzling synths and sonic ear candy.” They were really lovely and I absolutely love their songs: I can’t wait for them to release more.
The other students, Lea Frances, Francesco Pio Ricci, Becky Kerly, and our host tutor, Anjali Perin, were all amazing and interesting and different and it was a really incredible experience to be a part of. You can actually listen to the whole circle here and hear everyone’s beautiful music and stories. There’s something strangely spiritual about a songwriters’ circle and I hope you can feel that without actually being there. Speaking for myself, it felt magical and exactly how songwriting and songwriters’ circles should feel: a coming together and sharing of stories, of songs, and of souls. And holding it in a music university, getting a sing-a-long isn’t difficult and that’s one of, I think, the most special things you can experience as a songwriter, as a performer. The whole event was so wonderful and I felt so lucky to be a part of it.
My lecture didn’t start until eleven so I got a bit of a lie in after the late-ish night and all of the emotion but then I had a bit of a headless chicken morning, running around, back and forth, getting ready and packed up for uni. But I made it on time, a little early even so I got to chat to my friends. It felt like a very weird morning: I just felt super emotional and like crying at every little thing. It was hard work to stay composed.
The lecture covered the grading criteria for the assessment essay, which was really helpful. I find the language really confusing so going through it with a tutor explaining it in detail and in real, human language made is much more accessible and easier to understand.
But the main part of the lecture focussed on Max Martin – we cover one songwriter a week and look at techniques they use and so on. It’s really interesting, especially because they’re all really different. So, for Max Martin, we focussed most on melody, syllable count, and melodic math: a device used to make melodies really tight and memorable. It was fascinating, especially to someone who puts lyrics before melody. I don’t know if I could ever do it consistently because lyrics are so important to me but it’s definitely something I’d be up for trying out, just to see what the result sounded like.
Then I have a four hour break before the next class but I spent some of it hanging out with my friends, an hour at a meeting about the upcoming Nashville trip, and then two hours writing with one of my best friends on the course, Luce, while our other friend, Sharné sat in the room with us and worked on some of her own work. We worked on a song for a couple of hours, getting quite methodical and looking at the deeper message of the song and so on but I don’t think either of us were in quite the right frame of mind to write so the three of us just ended up talking. They’re such lovely people that talking with them, whether it’s about random stuff or intense, emotional stuff, the conversations mean a lot to me.
The second and final class of the day was the workshop, where we play songs we’ve written based on the previous week’s artist’s techniques. A lot of people don’t turn up, presumably because it’s not assessed and they need the time for other things, so it was just me, Luce, and Sharné, which was actually really nice. There was a lot of time for feedback and I really enjoyed working on their songs and my song more intensely than we would usually have time for. They had both written great songs, both of which I really loved.
My only complaint about the classes is how cold the classrooms are. They’re absolutely freezing, so cold that we’re wearing our coats, scarves, and gloves in class. The air conditioning is on even in December and January. We’ve asked them to turn it off but there’s been no change. Especially on a day when I was very emotional, being so cold just made me want to cry.
Fortunately, my Mum was working in London and the end of our days coincided so she picked me up and we drove home together, catching up about our days. We got home and I was so exhausted that I went straight to bed. It had been a long and emotional couple of days.
After my busy Tuesdays (and this busy Monday), I take Wednesday as a rest day. And I tend to work on at least one weekend day. I might technically be doing my course part time but I have to be very flexible about the way I work because of Autism and mental health problems cropping up and making work difficult. I can’t write a song or research an essay if I’m recovering from a meltdown for example. It sucks, because it means I have to plan my life very carefully to allow for these problems but also be very flexible in case they do. It’s so frustrating. I hate it.
I did my origami and then spent the day bouncing between writing my diary and the continuation of moving my songs all into one notebook. They were very calming tasks. I tried to work on a song but just couldn’t make my brain work (I think I was too tired) and then, when I gave up, I lay down on the sofa and accidentally had a three hour nap.
All of the cats!
I finished the day having dinner and watching Law and Order: Special Victims Unit with my Mum (it’s the show that just the two of us in the family watch). It was very relaxed and really nice to spend some time with her.
I had had serious anxiety about the work I have to do all day but had been managing it with Diazepam. It’s something I deliberately try not to think about on rest days because they’re my weekend where I have fun or recharge. I’ll spend the other days of the week working on those things but rest days are for resting. It’s still hard to shut off that anxiety though, even with the Diazepam.
As had become my pattern, I started my day with my piece of origami for #30dayfeb. On this day, it was another bird. I did a lot of birds. They were pretty and not too challenging (I wanted challenging but some of the origami tutorials I watched were virtually impossible for a beginner like me).
Most of my morning involved going to therapy. It ended up being a very intense, upsetting session – therapy can be a bit of a funny paradox because if you leave feeling exhausted and drained, chances are you’ve worked really hard and done some important work; you’ve just got to look after yourself afterwards. We were talking mainly about a difficult relationship in my life and how to handle it as well as my OCD and how it’s affecting my Masters work. Trying to control it enough to get the work done is gruelling and exhausting and sometimes it feels just too hard. It spiralled into harder and harder stuff and I ended up in tears. Getting myself together to leave was a struggle. And then, to make things worse, the cab I needed to get home didn’t turn up and I was left waiting in the rain for half an hour, until my therapist came to check on me. She lent me her phone and I called another one.
I eventually got home and called my Mum at work, sobbing down the phone because it had been just too much after a difficult session. Plus changes in plans really throw me. Talking to her managed to come me down a bit and I felt a bit better when we hung up. I was tired enough to sleep but my brain was whirring too fast so I was still awake but groggy when Mum got home.
We had some dinner (and some red bull) and caught the train to London. We were going to see Waitress again, mainly so that I could try and meet Sara Bareilles after the show. She’s had such an impact on my life that I just really, really want to meet her and thank her. And getting to see the show again isn’t exactly a hardship. I love the music, the cast is fantastic, and the story always inspires me; it makes me feel like I might end up happy, even if it’s not in the way I expect or currently want it to. That’s big for me. And Sara is just amazing. She just is Jenna. She’s plays the part like it was written for her and she sings like Jenna is a part of her. ‘She Used To Be Mine’ is one of my favourite songs ever and there’s something magical about hearing her sing it live. This show is so important to me and it always will be.
We rushed outside to see if I could meet her and we met some of the other cast who kindly chatted with us and signed my ticket but Sara herself didn’t appear. After a while, the security guard said she’d left but I was reluctant to just go, having been told the same thing in the past and gone home only to see people posting selfies with her on Instagram. But this security guard had been really nice to us earlier in the night – so I felt I could trust him and his explanation – and he told us that she had an early engagement the next day and so she’d had to leave straight away (as it turns out she was on This Morning the next morning so it was entirely true). So we went home. We have one more opportunity to meet her before her run ends so hopefully I’ll get to meet her then. I know a lot of people don’t get my dedication to seeing shows more than once (I often get overwhelmed mid show and so seeing them multiple times allows me to get the full experience – and why would you not want to see a show you love more than once, especially if it’s only on for a limited time?) and meeting the artists but they’ve really shaped my life and therefore become part of my life so it feels important to connect, even if in the tiniest way.
Marisha Wallace (who plays Becky – she has an incredible voice and is utterly hilarious) signing my ticket.
We caught the train home and fortunately got back not too late, considering we’d waited afterwards (I appreciate that they hadn’t just left us waiting in the cold). I went straight to bed and was asleep in seconds.
I did my origami (an apple) and then spent the morning doing some reading for my Masters, working on my songwriting book when I needed a break. It was very gentle and chilled after the emotional day and late night from the day before – the perfect antidote.
Lucy keeping me company.
I had a late shower but ended up sitting on the bathmat, sobbing because there’s just so much sadness in me. There’s so much sadness, past and present, happening in the world and to the people I love. It overwhelmed me and I just got so upset. It happens sometimes, quite a lot in fact. I’m an emotional person but I’ve been particularly emotional recently.
In the afternoon, I had an appointment with the doctor. Mum always comes with me to these appointments, especially with doctors I’m not familiar with (the Autism specialist doctor has been away), in case I get overwhelmed and because she knows my mental health and Autism history really well, sometimes better than me. We talked to the doctor about the pain I’ve been having from my fingers to my shoulders (I was, at that moment, having some really bad pain in my hands and left shoulder), which is obviously cause for concern. We talked about support for people with Autism, which there still seems to be a distinct lack of, plus several other things. I found it very unhelpful and distressing but Mum seems to think that the information we got, good and bad, means movement – in her plans and research, I suppose. So I guess that’s something.
To cheer me up, we went home via the nearby pet shop. We need to replace the cat tree/scratcher so we went to look at the ones they had and there were some possibilities but we need to do some measuring before we commit and buy one. But we did buy a couple of little cat toys, mainly to make me happy: a little unicorn and a little Grumpy Cat (we try to avoid buying toys that look like real animals so that they don’t give us a huge shock, thinking the cats have brought in a mouse or something). They’re really cute.
The unicorn toy and the Grumpy Cat toy.
Then we came home and had a gentle evening. I did some reading for my essay and then me and Mum had dinner in front of SVU. When I finished eating, I did some diary writing. It was an attempt at calm but I was still very anxious, even taking Diazepam. I’d intended to go to a friend’s gig in London but I just had too much pain in my hands, arm, and shoulder that I just couldn’t do it. I felt so bad because it’s been so long since I’ve been to one of her shows and I felt like a bad friend for ‘not supporting her.’ I could’ve managed the show but the travel just made it too much. I felt really guilty for not going, something I struggle with a lot – guilt, that is. So it was a difficult evening.
I spent most of Saturday songwriting (after doing my origami). I tried to write both with a pen and on a computer – diary, blog writing, or research – but my hands felt thick and stupid (which we think was a side effect of a medication I’ve now stopped taking since it wasn’t helping and there were too many side effects – none of them serious but all of them unpleasant and unhelpful) so it was a real struggle. Playing piano was really the only thing that wasn’t difficult in that sense and so I spent a lot of the day playing, writing, and editing songs, several of which I really like.
I also put up my blog post about Lucky, which I’m really proud of.
Me and Lucky on Christmas Day with his new toy.
Me and Mum spent some time in the afternoon and early evening talking about a presentation I have coming up, talking rather than writing since my hands were still struggling. Then we had dinner and watched some TV together. I ended up falling asleep on the sofa at seven because I was so exhausted by everything going on and Mum had to all but drag me off the sofa and steer me to bed.
I woke up stupidly early (at half past four) and couldn’t go back to sleep as hard as I tried. Eventually I got up and moved to the living room, putting the TV on low and getting to work: sending emails, social media messages, and so on. I’m better in the mornings, more awake and less anxious, so those things feel easier. I organised my diary and did some blog writing. It was a productive start to the day, despite the painfully early start.
Mouse keeping me company while I worked.
Once Mum was up and we’d had breakfast, we did some house jobs (such as fitting the new cat flap) and I talked to a friend who was very upset before getting down to work on my presentation. I’d been talking to various people since it was set as an assignment so I felt prepared when I sat down to make the presentation slides. I spent the day working on the slides and beginning a script for what I was going to say.
In the evening, I ran it past Mum (who does a lot of presenting as part of her job) and she critiqued it for me. Then one of my other parents came over and we had dinner in front of Tim Minchin’s Orchestra Tour DVD. He’s truly an incredible musician and performer.
It was a productive day and I went to bed as late as I could manage – about ten o’clock – and took a sleeping pill to make sure I got a good night’s sleep.
I hope that was interesting, that it gave you a glimpse into my life. Let me know if you want more of these because it was definitely interesting to write.
Category: about me, animals, anxiety, emotions, event, favourites, medication, mental health, music, ocd, sleep, therapy, treatment, university Tagged: 30dayfeb, anjali perin, anxiety, aripiprazole, asd, autism, autism spectrum disorder, becky kerly, blog post, cat, cats, chronic fatigue, chronic pain, day in the life, dbt, dialectical behaviour therapy, diazepam, doctor, dog, francesco pio ricci, grief, lea frances, lgbt, masters, masters degree, masters degree in songwriting, medication, mental health, mental illness, obsessive compulsive disorder, ocd, origami, pet, pets, richard marc, ris, sara bareilles, self care, sleep, songwriter, songwriters circle, songwriting, therapy, university, waitress, waitress the musical
Posted on February 15, 2020
January was tough. A lot of difficult things happened. Normally, I wouldn’t do a monthly round up but there were several things this month that I didn’t think would get properly acknowledged (in my yearly review or otherwise) if I didn’t. So here’s January 2020 and it’s highs and lows…
(Luce Barka performing ‘Be More Kind’ – a very beautiful, meaningful song.)
“I’m so, so excited to announce that the music video for ‘Clarity’ will be coming out Friday 7th February! @rsandersonphoto and I had such so much fun shooting this and there’s a pretty cool surprise in there so we hope you love it as much as we do!” (x)
So that was January. Yeah, 2020 – the new decade – began on a very stressful and sad note. I’m thankful for the moments of light.
Category: animals, anxiety, autism, death, emotions, event, favourites, food, meltdowns, mental health, music, university, writing Tagged: 30 day challenge, 30dayfeb, asd, assessment, assessments, autism, autism spectrum disorder, baby loss, baby loss awareness, bad night, bbc introducing, bbc introducing south, befries, bereavement, cheer, clarity, clarity music video, disabled student allowance, dog, dsa, dsa assessment, election, england, exams, favourite music, friend, friends, gig, grammys, grammys 2020, halsey, honest, honest ep, loss, lover, luce barka, luce barka music, manic, masters, masters degree, masters degree in songwriting, meltdown, meltdowns, mindfulness, music, my music, natalie hemby, netflix, origami, pet, presentation, radio, richard marc, richard marc music, sara bareilles, she used to be mine, show, songwriting, spotify, stress, taylor swift, tommy's, track of the day, uk, university, waitress the musical, wellbeing
Posted on January 18, 2020
Now that I’ve finished my assessments, I thought it might be an interesting idea to sit down and write about my experience of the first semester of my Masters Degree. Because I’m doing it part time (mainly to protect my mental health), I’m only doing one module rather than two, which is what the full-timers do. The module I did was called ‘Creative Process’ and it was four hours of uni time, a two hour seminar where we talked about different areas of the creative process and then a two hour workshop where we played the songs we’d written based on the ideas and concepts we’d talked about the week before. It was a really interesting module and I wish my mental health had been better so that I could’ve focussed and enjoyed it more.
I feel really lucky when it came to my group and my tutor.
My group was only about nine people (when the other groups were much larger as far as I know) and they were all absolutely lovely. We were all really different, both musically and life experience wise (but I guess that’s what happens when you get to Masters level), which was really interesting when it came to writing and socialising and… just everything. It was a completely new experience and one that I’m really grateful for. Up until now, I’ve mostly been surrounded by people my own age with similar experiences.
Everyone was so, so good, all in their own way. They all had their own style (some had particularly beautiful musical signatures, some wrote from interesting perspectives with thoughtful lyrics, and so on) and it was so interesting and exciting to see how they developed over the semester. We were and I know will continue to be so supportive of each other’s music and development as songwriters. It always felt safe to bring in something I felt unsure or insecure about and the feedback was always constructive and because the person wanted you to get better; I never once felt like someone was being mean or looking down on me. It was such a supportive atmosphere and I’m so grateful because I think that was a huge part of what helped me to grow so much as a writer.
I made two really good friends in particular, both of whom I’m still in the same group with to my absolute delight. They’re truly beautiful souls. One of them, Luce Barka, wrote this amazing song during the semester and has said she’s happy for me to share it with you guys. I really, really recommend it…
I also had a fantastic tutor, Isobel. She’s a really cool, independent singersongwriter, which I think made her an especially good teacher because she’s very immersed in the industry we’re all trying to get into, in her own, distinctive way. She’s also dealt with serious health problems (which she has talked about publicly so I’m not breaking her confidence or anything) so I felt like she was a really good tutor, especially for me. She understood, or had a kind of understanding, of what I deal with. She was a really, really great tutor, in discussions and when giving and guiding feedback. But for me personally – and this is my blog after all – she was incredible when it came to helping me manage the course against all of my issues. When my anxiety was overwhelming, she helped me adjust the tasks to make them easier while still allowing me to do the task and learn the skills. I am massively appreciative of how accommodating and generous and kind she was, even before she received the Student Support Agreement (the document with all my information and recommendations).
Anyway, she was amazing. I learned so much, obviously from the course but also from the way she delivered it and the feedback she gave me. I feel like I’ve grown so much as a writer and I feel like she’s a really big part of that. Plus, I’ve never had a teacher who was so understanding, who helped without hesitation, with just my word to guide her. I can’t properly express how much I appreciate that. It’s never happened to me before and it felt so wonderful to be treated as if it was something you just do, rather than being made to feel like a burden or an obstacle to be manoeuvred. So, as much as I learned (and I learned a lot), that is what I’m most grateful for and one of the things that I will always remember about this semester.
The first few weeks were really, really tough. After my massive meltdown in Victoria station, I was having meltdowns every day (as I wrote about here), which was having a big impact on my mental and emotional health, also leaving me physically exhausted. That significant meltdown was triggered by an email from the Disability Coordinator (who was also an Autism Specialist), suggesting a very last minute change of plan for our scheduled meeting which still leaves me bewildered. As an autistic person, sudden changes of plan are known to be highly problematic. That, plus my existing anxiety, caused a massive meltdown that took a very long time to recover from. And it left me feeling less than confident in her ability to support me even though we had had a positive first meeting and I had left feeling cautiously optimistic that this time it might be different. It then didn’t improve as actions promised at that meeting didn’t get done, leading to more meltdowns. So that was a real complication and painful part of the semester.
Having said all of that, I loved the classes. We learned about songcraft, collaborating, imposter syndrome, professional practice, perfectionism, and so much more. It was fascinating and fun and the briefs, while often stressful (with only a week to write the song), were interesting and challenging. I wrote some songs that I’m really proud of and I feel like my songwriting grew a lot because the briefs were challenging.
We watched this video in one of the classes and I thought it was really good so I thought I’d share it:
I loved it – loved getting better at songwriting – even the bits that pushed me and made me feel uncomfortable.
However, out of class was another matter. We were expected to do research that would later become the foundations of our assessment essay and presentation. Except whenever I asked, they wouldn’t tell me what the assessment entailed and just said it was ‘self directed learning’ so I didn’t know what I was actually researching, which caused me terrible anxiety. I created a reading list of books, articles, and interviews about creativity and songwriting but as hard as I tried to do the work, my OCD – my need to write everything down – battled against it. And usually won. So if I wasn’t writing, I was reading. I had no downtime. I was constantly anxious, like, end-of-the-world-anxious. And I felt like I was failing.
They explained the essay and presentation in the last couple of weeks but I still didn’t really understand. The language was complicated and vague and while I understood the general idea, the grading criteria was pretty ambiguous. I didn’t know what I had to do specifically to get good grades. I need clarity. It was incredibly stressful.
It took a couple of last minute meetings with my module leader to really understand what was expected of me but I was now facing a myriad of problems. The research I had been doing had little relevance to the subject I was writing about so I’d have to redo all of that, as well as actually write the essay and prepare the presentation. Plus we were in the final two weeks of the semester and the university would soon be closed for the Christmas holidays so I would have no way of contacting anyone for any support. I was wound so tight I felt like my spine might snap. I felt like I couldn’t breathe. I’m really grateful for those meetings but I just wish the assessment had been clearer earlier in the module so the research I was doing could’ve been more focussed. With all the problems associated with Autism, like chronic fatigue and chronic pain, time is something I have to be incredibly thoughtful about.
I worked every day of the entire holiday (apart from Christmas Day, which I spent with my family – something I don’t often get to do) but the assessments were always in my head so I felt like I couldn’t take a break or have any time to rest and recharge. I still didn’t feel sure that I was doing it right but still, I worked hard on it and gave it everything I had. I finished both the essay and the presentation with time to spare, allowing myself time to redraft and prepare, giving myself the best chance of doing well. I submitted the essay, despite big technical problems with the system, and I did my presentation to the best of my ability, despite finding presentations incredibly difficult. Now I just have to wait for the marks.
Now, having run through the whole semester (and having reflected a lot on the difficulties), I just wanted to share a couple of specific, positive experiences:
Overall, it was a very mixed bag. The good moments were great and made me feel amazing. I got a lot out of it. But I spent a lot – A LOT – of the semester in crippling anxiety and I had a lot of meltdowns. It was fucking hard. And the marks haven’t even come back yet. I’m terrified that I’ve done horribly. But I’m trying not to think about it. I’m just trying to get through this new semester. Which may be even more stressful than the last.
Category: anxiety, autism, holidays, meltdowns, mental health, music, ocd, university, video Tagged: anxiety, asd, assessment, assessments, autism, autism spectrum disorder, autistic, christmas, christmas holiday, creative process, elizabeth gilbert, essay, first semester, i'm with you, luce barka, masters degree, masters degree in songwriting, meltdown, meltdowns, mental health, mental illness, perfectionism, presentation, research, review, semester, songcraft, songwriters, songwriting, student support agreement, tedtalk, tutor, university, video
Posted on January 11, 2020
So, for those of you who don’t know, DSA stands for Disabled Student Allowance, something you can apply for as a disabled student to help you get support during your university experience. They can help you with technical support, in uni support like 1-to-1 sessions, and so on. You apply for an assessment and then, if you get one, you talk with the assessor about the support you need, discuss what DSA can provide you with, and then they make a recommendation.
I had an assessment during my undergrad degree and they were really good. They provided me with a load of useful tech, including a macbook, a handheld recorder, and several pieces of software to make doing my work easier. I was (and still am) really grateful, even though the laptop’s memory isn’t actually big enough to run all of the software. It was still a laptop and a much lighter one than the one I had, which made commuting a lot easier – I was coming home with bruises from the bag I was carrying because it was so heavy.
The at uni support was less helpful. The first person I saw acted like a therapist (which I’m not sure she was supposed to be doing) and I already had a therapist so that wasn’t helpful. I spent the hour answering questions about my mental health and my Autism that I’ve answered a hundred times before. So I didn’t continue with that. And the second person upset me so much that I left before the session finished.
So it was a mixed experience but I’m endlessly grateful for the laptop because the old one was causing me serious problems.
I had to redo the application process for my Masters as what they offer is different and today I finally had my assessment – between the disability coordinator being very unhelpful (an understatement) and the semester being incredibly stressful, we’d just kept postponing it. It was too much to manage. But recently we finally managed it and it was a complete nightmare.
The guy was nice and we discussed everything – the problems with the disability coordinator, my first semester, my general experience of life, what would make university easier – but when it came to talking about what support was possible, it was very disappointing and upsetting.
This is despite the fact that I need a light laptop, due to the chronic fatigue and pain I struggle with and an Apple one to run the software I need for the course. But apparently this is because these are ‘course specific’ needs rather than disability needs, yet I – a disabled student – can’t do my course without them.
This is because, apparently, I choose to live at home rather than living in London like most students studying in London despite the fact that I am unable to live alone and look after myself because of my disabilities. Apparently, this would give me an advantage above other students, which is bullshit because in reality, it would simply put me on a level playing field because I am disadvantaged by my disability. And the amount of effort that would go in to justifying each cab trip to Student Finance when Mum usually takes me (because they won’t simply give you an allowance for it) would take more effort and energy than I have to spare on something used so rarely.
And uni support wise:
So I will continue to have no specialist support at uni.
There was a moment during the discussion that I just realised that they weren’t going to help me and that I was going to be left unsupported, abandoned, again. And I just started crying. They’re not going to provide me with any support because my needs don’t fit their guidelines, because my disability doesn’t fit with their idea of disability. The assessor said it happens to a lot of people like me. I’m not sure why he told me this. Is it supposed to make me feel better? Because it doesn’t.
We’d run out of things to discuss so the assessor left the room to give us a few minutes to talk and I just started sobbing. I just feel so unsupported. I feel so let down. These are people who are supposed to help me. Their very job is to help me and they are… letting me down. There was nothing to talk about and I was moments away from a meltdown so Mum packed me up and we headed for the door.
I was passing through the door when I saw this:
What a joke. What a fucking joke. I’d walked in there calm and was walking out feeling… I don’t even know how to explain it. Just devastated all over again, I guess. I’m so tired. I’m so tired of working so hard to prove to everyone that I need help only to be ignored time and time again. I’m tired of being dismissed and invalidated because I don’t fit someone else’s arbitrary concept of something they have no real idea of but that I live with and suffer with every day. I’m tired of nobody thinking that researching or training in the understanding of Autism is important. I’m so tired. Of all of this.
Mum pointed out to the assessor how ironic the flyer was. I think offensive or appalling are more appropriate given the previous hour and a half but whatever. I cried all the way home and for a long time afterwards. I don’t know what to do now.
Obviously this is just one person’s experience. I’m not sharing this because I want people to avoid applying for DSA. It helped me during my BA. But I just don’t want anyone going into it without knowing how hard, how upsetting, how traumatic it can be. Getting benefits of any kind can be a real struggle and this one is certainly no different.
Category: anxiety, autism, depression, event, meltdowns, mental health, university Tagged: asd, autism, autism spectrum disorder, benefits, chronic fatigue, chronic fatigue syndrome, disability support, disabled, disabled student, disabled student allowance, dsa, dsa assessment, masters, masters degree, student, university, university support
Posted on January 1, 2020
In January, I was inspired to try the 19 for 2019 challenge, setting myself nineteen goals to achieve by the end of the year. They didn’t have to be massive goals; they could be one off things to simply try. I was inspired so I came up with nineteen things and gave it a go. Unfortunately, I wasn’t aware of what a hell of a year I was about to experience.
So it’s a pretty mixed bag and considering the year I had, I’m surprised I managed any of them at all. I’ve struggled throughout the year, especially recently, with how little I’m achieving and the frustration and anger and guilt that comes with that, that comes with living with mental health problems and a developmental disability. I’m trying to focus on the fact that, where I could, I tried. I tried to do as many of these things as possible.
Overall, an interesting challenge but I think I’ll try something different for 2020. I haven’t found the right kind of goal system yet so I’m just gonna have to keep looking and keep trying.
Category: about me, anxiety, autism, book, depression, emotions, food, medication, mental health, music, trichotillomania, university, writing Tagged: 19 for 2019, 19 for 2019 review, 2019, 2020, alcohol, anxiety, asd, autism, autism spectrum disorder, blood donation, bone marrow register, book, books, chronic fatigue, chronic fatigue clinic, chronic fatigue syndrome, coffee, depression, fatigue, fawm, february album writing month, goals, guitar, hair pulling, invisible braces, mental health, mental illness, meteor, meteor shower, napowrimo, national poetry writing month, new year, new years resolutions, photo album, photo albums, piano, poetry, reading, resolutions, rock climbing, songwriting, swimming, tattoo, tea, trich, trichotillomania
Posted on December 15, 2019
If you guys follow me on social media, you’ll know that this week, I posted about going back to therapy and being rediagnosed with OCD…
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I’m back at therapy! And this is one of my therapist’s dogs who thinks she’s small enough to sit in my lap. Anyway. I never deliberately stopped going but our schedules have been very difficult to align for a while, particularly with me starting my Masters, and so it’s been a good several months since I’ve had a session. I almost feel like I’ve forgotten how to do it, do therapy. But I’m back and hopefully it will help with my anxiety, which has been severe for a while now. And on that note, I’ve been rediagnosed with OCD! I’m gonna write more about this in a blog post soon but this is really good for me. I have a plan of action. It’s gonna be a long road and I am anxious about it but I feel better knowing what the treatment options are, some of which I’m already doing. So despite feeling very unwell, it’s been a positive week. It’s progress.
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So, that basically explains what’s been going on with therapy (I’ll update you on all of that as I continue with therapy) but I wanted to talk a bit more about the OCD diagnosis because that’s kind of a big deal.
Back in 2016, I was diagnosed with depression, anxiety, social anxiety, OCD, and BPD. And then I was diagnosed with ASD. But in the last year, my psychiatrist reorganised my diagnoses and decided that the symptoms he’d originally seen as OCD fell under some of the other diagnoses, particularly the ASD. But recently, it’s become very clear that it really is OCD.
If you remember this post, I talked about having a massive meltdown, which triggered daily, multiple meltdowns. It was awful and one of the most difficult periods of my life, mental health wise and otherwise: dealing with that and trying to manage the beginning of a Masters. It was pretty hellish. I’m not sure when it stopped but it slowly faded and I’m now only having a meltdown every couple of weeks or so – still a bit more than usual but much more manageable.
But that really triggered something in my obsessive diary writing. My diary writing has been pretty compulsive for years: I NEED to write everything down. It’s like, if I don’t record everything that happens to me, I’ll forget who I am. It’s a constant battle, but it suddenly went from manageable to completely overwhelming. It takes up all my time or it would if I didn’t have all this research to do for my Masters. So these two things are constantly pushing up against each other, which causes me a lot of anxiety. But the diary writing usually wins, which only causes me more anxiety, anxiety that I’m going to do badly in my Masters. And even though I know all of this, I still can’t stop writing. And because there’s more life than there is time to write, I’m just getting more and more behind. More anxiety. So I’m just a big ball of anxiety. It’s like a snowball rolling down a hill, getting bigger and bigger and going faster and faster.
It took forever to get an appointment with my psychiatrist (so the anxiety has gone on a lot longer than was necessary or fair, in my opinion), but eventually I got an appointment. And of course, the time was then changed last minute, the sudden change of plan sent me spiralling into a meltdown. So it took a long time but I finally saw him and we talked about all of this in great detail and he decided to re-diagnose me with OCD. I’m so relieved because now it has edges; it’s not some vague, amorphous cloud of stress hanging over me. A diagnosis gives me something to work with.
We talked about the treatment options, medication and therapy. Medication wise, I’m already taking the things he would recommend so that’s that avenue covered. I don’t know much about the therapy route yet. As far as I know, I’ll have to reduce the writing bit by bit, which – in itself – is going to create more anxiety. Hurray. Not. It’s the whole ‘it’s gotta get worse before it gets better.’ But now I’m back in therapy and I have an amazing therapist so although I’m terrified of even more anxiety, I know I’ll have thoughtful, compassionate guidance. I don’t know when we’ll start because, as my psychiatrist pointed out, right before a set of assessments isn’t necessarily the most productive or helpful time to do this sort of stuff. But even though I’m scared, I need to start working on this soon or every semester is going to be like this one: a daily battle of OCD versus real life. And I really, really don’t want that.
Category: animals, diagnosis, medication, meltdowns, mental health, ocd, therapy, treatment, university, writing Tagged: anxiety, asd, autism, autism spectrum disorder, dbt, diagnosis, dialectical behaviour therapy, masters, masters degree, masters degree in songwriting, medication, meltdown, meltdowns, obsessive compulsive disorder, ocd, psychiatrist, therapist, therapy, treatment
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 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.
My second single, ‘Bad Night,’ is also now available on all platforms and is the first track from my new EP, ‘Honest.’