A Week in My Life (February 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.


MONDAY

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.

IMG_196455571B53-C8DE-4213-B9D8-5D2BBDBDB0AF


TUESDAY

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.


WEDNESDAY

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.

IMG_4899

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.


THURSDAY

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).

IMG_4930

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 calm 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.

IMG_2002

Sara’s bow!

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.

IMG_2026

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.


FRIDAY

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.

IMG_5022

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.


SATURDAY

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.

IMG_5086

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.


SUNDAY

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.

IMG_5107

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.

My DSA Assessment

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.

Technology wise:

  • They will offer me a Windows laptop (which I would have to part pay for) but I can only run the software I need on an Apple computer.
  • They will not offer me a (lighter) Apple computer.

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.

Travel wise:

  • They will not cover or contribute to the train tickets to London.
  • They will cover cabs to the station.

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:

  • They have no direct contact with the universities and so cannot offer any support through them.

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:

Scan 5

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.

19 for 2019 Reviewed

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.

  1. Stop pulling my hair out – Complicated. I’ve gone long stretches without pulling my hair out but then the stress induced habit has usually been replaced by another one. Right now I’m going through an incredibly stressful time and have recently started pulling again. Maybe next year’s the year.
  2. Read ten books – I read a handful of books early in the year but I didn’t really start to enjoy reading again until I read This Is Going To Hurt by Adam Kay. I devoured that: he has a beautifully personal writing style. Not long after that, I started my Masters Degree and I had an overly ambitious reading list so I read a lot. Plus, I had a phase of reading books from my childhood when I went through my bookshelf. So I definitely read more than ten books.
  3. Get a tattoo – I still haven’t managed to do this. I still like the thought of getting one and have multiple ideas but I really don’t like the way they blur over time. I don’t think I could bear to have a blurred tattoo on my body so I still haven’t gotten one.
  4. Continue swimming (or let it evolve) – There were periods of the year where I did manage this but sometimes the medication I was on meant I physically didn’t have the energy. And then when the kittens were born, I loved watching them in the early mornings, which was when I swam (before the gym got busy and stressful). Add in doing the Masters and what a drain on my energy that was, I haven’t been swimming half as much as I’d life. It’s definitely something I want to get back into in 2020.
  5. Write more songs – Given all the changes of medication (something that always seems to affect my songwriting) during the first six months or so of the year, I wasn’t able to write. I tried. I tried really hard and managed a few with the help of some wonderful cowriters. But now that I’m back on the Phenelzine, I am able to write again, alone and with others and I love it. For me, writing a song is the best feeling world; it’s feeling alive, it’s feeling connected to myself, to my soul, to the universe. It’s feeling real. So I’m writing again, as much as I’m able. And as I’ve started my MA, I’m writing for that too. I’m very aware of how much I’m learning and how much my songwriting is developing.
  6. Get my photo albums up to date – I did. And then they got out of date again. It was something I’d hoped to do over the Christmas break but I’ve literally been working on my assessments every single day. Fortunately my photos are well organised so when I have some time, it won’t be a terrifying task to attempt.
  7. Pursue the cause of my tiredness – I’ve tried. My god, I’ve tried. I’ve seen doctors and been to the Chronic Fatigue Clinic for a general session but that wasn’t at all helpful. I knew everything they told and have known for years and the other people there hadn’t been dealing with it for a fraction of the time I have been. So I didn’t feel very positive about that experience. I’m waiting for a follow up from them but I had no idea when that will be or how much it will help me.
  8. Improve my instrument skills – I barely did anything musical for a significant part of the year due to medication side effects and crushing depression so I’ve probably gone backwards in my instrumental skills. Having said that, I have been working on them since I started the Masters (particularly the piano so I didn’t have to carry a guitar up and down from London). So not a total loss. And hopefully this will continue as I continue with the Masters.
  9. Watch a meteor shower – In January actually, I did manage to catch a meteor shower and it was beautiful. I don’t think I’ll ever get over how magical meteors are; they’re just takes me breath away. And there was one huge one that streaked across the sky, like a knife cutting through the roof of a tent and letting in light. It was one of the most amazing things I’ve ever seen.
  10. Write more poetry – I did write a little poetry, but that was only during NaPoWriMo. Either my mental health was going down the drain or I was too busy writing songs for poetry. Why is there never enough time? Sometimes I feel like the world is moving really fast around me while I move at an ordinary speed.
  11. Finishing decorating and organising my room – I started to and then I somewhat undecorated it with the creation of the music video for my single, ‘Bad Night.’ While it’s mostly been returned to rights, there’s still some damage (a fist sized crack in the plaster that I haven’t gotten around to repairing). It’s just one of those things that’s always on the list but slips down to more urgent things. Hopefully I’ll get there at some point.
  12. Find an alcoholic drink I like – I’m now back on a medication that means I can’t really drink. The odd drink is fine but yeah, I can’t really drink. Before that though, I tried a lot of different types of alcohol and just really hated all of them. I also discovered that I’m allergic to limes, which are in a ridiculous amount of alcoholic drinks, including one that I actually did like. The one drink that I do enjoy is a passionfruit mojito even though it does contain lime extracts. So far, drinking them – and I’m not drinking them very often – doesn’t cause a reaction.
  13. Find a tea or coffee I like – Nope, they all still taste awful to me. I find it frustrating because drinking coffee is such a ‘normal’ thing and I feel like, having been denied so much by my Autism, it’s unfair that I don’t even get to be normal in this tiny way.
  14. Get invisible braces – Success! I was fitted for invisible braces and have received the first half of the set. I did really well at wearing them for a while but during the second half of the year, I haven’t done so well. It just felt like too much when I was struggling with serious anxiety. I’m hopeful that, with what seems like a less stressful semester starting January, I’ll be better at wearing them.
  15. Go rock climbing – Nope. I would’ve loved to but again, all the medication and energy stuff made that impossible. Another dream for another year.
  16. Participate in FAWM – I tried really, really hard to take part in February Album Writing Month but as it was (obviously) at the beginning of the year when I was trying different medications and therefore really struggling with my writing, I didn’t get far. I made several solid attempts and wrote several parts of songs but I didn’t manage to write even one full song.
  17. Participate in NaPoWriMo – Again, I tried and did write some poetry but nothing I was terribly enthused by. And I wasn’t particularly consistent and didn’t do it everyday but I tried. I tried.
  18. Donate blood again – I would’ve loved to have donated blood again but a lot of the medications made me ineligible to donate, which sucks because it’s something that’s really important me. So this is off the cards for the moment but as soon as it’s possible again, I’ll be back.
  19. Join the bone marrow register – Another one I’ve failed at. There’s just been too much health stuff and I’ve just been too unwell to think about it. Plus there were long stretches where I simply forgot. I want to do it so it will stay on the list until I manage it.

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.