A Week In My Life (in Lockdown)

It’s been a while since I did a ‘week in my life’ post and I haven’t done one about lockdown, mainly because I feel like most of my days are incredibly similar, which wouldn’t exactly make for a scintillating post. But I saw the idea in my ‘blog ideas’ list and realised that over the last few weeks, I have managed to be a bit more productive (with my mental health fluctuating so wildly, it’s hard to really get into anything) and so each day is looking more like its own entity.

The week in this post started on Monday 22nd June and ended on Sunday 28th June.


MONDAY

Even though I don’t have anywhere to be, I’m still getting up relatively early, partly because I’m at my best mentally in the mornings (generally) and partly because we have five cats who are always very eager for breakfast. They’re actually really helpful when it comes to maintaining some kind of routine; sometimes I think it’s easier when there’s something external to build from, rather than trying to build it from nothing.

Cats fed, I settled on the sofa and replied to all the messages on my phone that were waiting for me. In times of mental distress (which there is a lot of lately), I tend to abandon my phone and withdraw from communications because it’s all just more than I can handle. However, it can then be a rather daunting task when I feel able to engage again. But I managed to reply to everyone and messaged some of my friends that I hadn’t checked in with for a while.

I spent the morning sorting through my tech box of electronics, my store of everything electronic, from spare pairs of headphones to camera equipment to cables I know longer own the devices for – I’m sorting through all of my possessions and this was next on my list. I went through it, throwing out the stuff that was damaged or so old that it was no longer useable, piling up some stuff to give away, and organising the remaining items by function. I certainly don’t need the big box anymore.

I didn’t stop there though. I went through all eight of the USB sticks I’d found, deleting the files I didn’t want and storing those I did. I now have multiple memory sticks empty and ready to go whenever I need them. And then I started on the hard drives, most of them assorted back ups of my laptop. That’s a job that’s going to take considerable time. But I’ve assigned each of them a function and started moving the relevant files. I can’t have done more than a quarter of the work and even that took most of the day.

Eventually I gave up, having spent so much time on it that I kept getting confused about which hard drive I was in. So I disconnected them, packed them away, and did a couple of hours work on my blog post for the kittens’ birthday post (here). Me and Mum had dinner together, continuing our rewatch of Nikita, and then I spent about forty five minutes at the piano, during which I recorded this:

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This song calms my soul ♥️ @sarabareilles

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Then we fed and settled the cats before going to bed.


TUESDAY

It was a quiet day. I spent most of it working at my laptop, finishing the blog post for the kittens’ birthday the next day and writing the one about coming off Pregabalin (here). I also planned out the next few as well, with sketches of the rough post structures. So it felt like a pretty productive day, which I was pleased with.

My Mum and I usually work pretty companionably since her desk is in the living room and I tend to work from the sofa (it’s better for the physical pain that I usually deal with to some degree or another – I need to get a specifically supportive desk chair but I’d have to go and try them out, something I can’t – and wouldn’t choose to – do until it’s safe). But recently she’s been working at the kitchen table, paper spread out around her as she transfers her accounts to a new system. It’s weird, going from being basically on top of each other to almost feeling like I’m alone in the house.

We reconvened in the evening, having dinner with several more episodes of Nikita, and then I sat at the piano, playing for almost an hour, methodically practicing each of the songs I’ve been learning recently. Thank god my neighbours are so easygoing and even supportive of my music because I usually ending up playing fairly late at night and even though I try to keep it as quiet as possible, some noise does drift through the walls.

I was just going to bed when I got a Twitter notification that Ingrid Andress is doing a virtual show on Tuesday 30th June. I love her and was supposed to see her live when I went to the US (before the trip was scuttled by the pandemic) so that was really exciting. I went straight to my computer to get a ticket and thank god I did because it was already difficult to get a ticket. I also managed to get a meet and greet, which should be fun; I have no idea how it will work online (plus it will be about 3am my time…) but it will be really nice to see her again. I’ve been going to her shows and chatting with her afterwards for the last several years so I’m glad that lockdown won’t prevent that.

(Note from present me to past me: it was an awesome show and I really enjoyed my chat with Ingrid.)


WEDNESDAY

It was the kittens’ first birthday so we didn’t delay in heading downstairs and presenting them with their present. They both had a go at it but it was Sweep that eventually managed to open it, revealing the birthday cake shaped toy. Despite not having had breakfast yet, they were both very excited and played with it enthusiastically. It remained in tact for about twenty minutes before Sooty managed to tear the felt flame of the candle off it… Sigh. Ah well. They don’t seem to mind.

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Unfortunately, I ended up getting caught in a panic spiral about the loosening of lockdown (I know I’m not the only one who feels that the government cares more about the economy and their reputation than the lives of the British public) and the scientists declaring that they feel we’ll still be dealing with the pandemic next year, that a second wave is extremely likely. The idea of feeling so terrified and so unsafe and so worried for my loved ones (plus the uncertainty around my education and my career) for all that time is exhausting and makes me feel almost overwhelmingly sick.

In hindsight, it probably turned into a meltdown but I didn’t really process that thought at the time. The intensity of my emotions are so extreme at the moment that it can be hard to clearly identify them within the mess I’m feeling. In the end, I was so worn out that I fell asleep on the sofa and didn’t wake up for three hours, a common reaction to a meltdown, for me at least.

When I woke up, I didn’t feel better – that’s not how it works, at least for me – but my head was a little clearer. WordPress had been playing up on my laptop so I hadn’t been able to post the kitten birthday post but eventually I got it up, complete with a video of the kittens: one second a day everyday for the first year of their lives…

In the evening, I spent about an hour on FaceTime with one of my friends. We had a good moan about missing each other and the things we can’t do, drooled over the guitars we wish we could afford, made plans for the first time we can hang out properly again. It was fun and nice and as normal as you can get in a time like this. Mum had wandered in and out of the room during the conversation and commented that we sounded like we always do, hanging out as if we were on opposite ends of the sofa. That made me laugh.

We had dinner together and continued our rewatch of Nikita, staying up far too late.


THURSDAY

I’d struggled to sleep with the heat so I woke up, still tired and with a throbbing headache. Not exactly the greatest start to a day.

I sorted the cats and then spent some time tidying the living room and sorting out my space: it had gotten pretty chaotic with the various stationary and electronics that I always have within reach due to my frequent need for them. It’s definitely better and I’m always calmer and more productive in a tidy space.

I’d intended to do some more organising of my hard drives but the rising heat (over 30 degrees) was only making my headache worse. I ended up lying on the sofa with my eyes covered, waiting for the painkillers to kick in, except I accidentally fell asleep and didn’t wake up until about three hours later. Thankfully I slept through the hottest part of the day: I don’t cope very well in the heat. The cats were struggling too, poor babies, stretched out on the cool of the kitchen floor. I’ve never seen them look so flat.

I didn’t manage a huge amount because the headache never really abated but I did get a few bits and pieces done: some research for the blog, some blog writing, watching a bit of TV. But most of my energy was focussed on managing the headache; I spent a lot of time with my eyes covered, blocking out the light.

Mum and I kept to our evening routine of dinner and Nikita rewatch (we’ve just finished season two, which has such a great finale) and then, to finish off the evening, I listened to the two tracks that Richard (my writing partner) had sent me and gave him my feedback. I loved them: they’re both really cool but I had a handful of comments that can hopefully be of use. I also sent him a song of mine to listen to before we start work on the production.

That done, I went to bed but it was so hot and humid that I felt like I could barely breathe.


FRIDAY

It was so hot that I just couldn’t sleep. It wasn’t until about five am that I finally drifted off. It was uncomfortable and frustrating but as least I got to witness the incredible thunderstorm that started at about two. There was a lot of lightning and heavy rain, although not much thunder. I sat up and watched it for ages. I absolutely love thunderstorms; they’re my favourite kind of weather. The air just feels different and I feel lighter. Apparently thunderstorms create negative ions in the atmosphere and that’s where that feeling comes from (x).

I struggled up at eight thirty and managed to have breakfast and a shower in time to relax for a moment and collect my thoughts before my therapy session. It’s taken me a while to get used to therapy via Zoom and while I still think face to face is better (and I really miss it), I am really grateful for it. I know that going without therapy during this time would be incredibly damaging for my mental health. I think it’s probably fair to say that we’re not necessarily focussed on making progress right now, rather we’re focussing on managing my emotions and the things I’m struggling with in the present moment, like my overwhelming fear of going outside and my sudden inability to sleep properly to name a few. I mean, technically it all comes under distress tolerance, one of the fundamental areas of Dialectical Behaviour Therapy so I guess we are making progress in a sense. Anyway, we had a pretty intense session because of several tough things going on at the moment, not helped by my lack of sleep. By the time we were done, I was exhausted.

I had a gentle afternoon, watching Nikita with Mum, and then napped on the sofa for a couple of hours. Three hours of sleep really isn’t enough. Throw in a tough therapy session and I was completely useless. I wasn’t going to make it to the end of the day without a nap.

In the evening, we had a socially distanced dinner and movie with one of my parents (she doesn’t live with us). Despite keeping up to date with the briefings and doing my own research, I’m still really confused about what the official safety guidelines are so we’re just sure to be really careful: apart from seeing each other now and then, none of us go out for anything other than the essentials, we social distance when we’re together, and we keep the space (and ourselves) as clean/hygienic as possible. It’s hard not being able to behave naturally together – having to be so conscious of the risks all of the time – but it’s so, so good to see her and hang out and have just a touch of normality, even if it is only a touch. I’ll take what I can get. Getting to see her in person is better than not getting to see her in person.

Despite my nap, I was tired and so me and Mum had a quiet evening together. Exhaustion always makes my anxiety worse so I just needed some time with her. Sometimes we joke that, rather than an emotional support animal, I have her: my emotional support person.

Always far too late (I swear I’m trying to maintain a regular sleep pattern), we fed and settled the cats before going to bed.


SATURDAY

I slept better but still not well and I woke up feeling very anxious and unsettled, usually how I feel when I’ve had nightmares but can’t quite remember them – I definitely want to write a post about how the pandemic has affected sleep and the increased number of nightmares. It was still quite early so I stayed in bed, trying to shed the feeling. The cool, grey weather helped.

Eventually I got up, fed the cats, and managed to get a few good cuddles in, which also helped. Although nothing helped as much as the Diazepam I took.

I had a quiet morning, doing some admin, some blog post writing, and a couple of video calls to family and then I spent the afternoon catching up with my diary. The one mental health problem that hasn’t been too badly affected by the pandemic and lockdown is my OCD. It’s much easier – and quicker – to write down everything that happens when so much less is happening; before lockdown, busy days could take hours and hours to write up. My ability to concentrate has been seriously compromised by my anxiety so it still takes longer than it should but at least, with emptier days, it balances out a bit.

Mum and I had dinner, continuing our rewatch of Nikita, and then I spent some time at the piano. One of the things I really wanted to use my empty semester – and I guess, now the lockdown – for was improving my musical skills and at the moment, I’m just really in love with playing the piano. I’ve definitely improved already, which is really satisfying. I practiced my current repertoire and then tried to work out a new song. But it was tricky and I was tired so I didn’t get far before giving up – for the night, not on the song in general.

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It was late but before going to bed, Mum (who used to be a full-time massage therapist, although it’s no longer her primary job) massaged my neck and right shoulder. My Trichotillomania urges have gone into overdrive since Covid-19 emerged and they’ve only gotten worse as time has passed. How I haven’t ended up with any bald spots, I have no idea. But because of my excessive pulling, my arm and shoulder have seized up and become really quite painful. The muscles actually hurt to touch but she was very gentle and I do think it helped.

We went to bed and I actually managed to get to sleep fairly quickly, which is a bit of a miracle at the moment.


SUNDAY

I managed to sleep in a bit, which was nice, although I’d still had busy dreams. It took me a while to make sense of what was the dream and what was real and when I dragged myself out of bed, I felt slow and sluggish. Fortunately the cats had been very patient about breakfast. Having said that, they were very pleased to see us (and vocal about it).

I had breakfast and a shower, leaving me with fifteen minutes or so to clear my head before my music lesson. One of my parents is a professional musician and music teacher and as another of my goals for this period of time is to improve my understanding of musical theory, I’d asked a while ago if we could spend some time on it together (well, via Zoom). So, every Sunday, we dedicate a couple of hours (sometimes more if we’re on a roll) to working out the chords to a song, figuring out the rhythms to play, etc and then discussing the theory that underpins those things in that particular song. Then I practice it in the week before our next session. It’s hard work – I’ve always found theory quite difficult to really understand – but I do think I’m getting better, if slowly. I think learning it in a practical, applied way is helping and it’s much more fun than just trying to memorise it from a book. To my amusement, it’s basically turned into an attempt to learn every Kalie Shorr song because I love her writing so much but it’s also given me a new appreciation for the songs because I’m seeing how much more to them there is. As I said, it’s difficult and I’m exhausted afterwards (probably from the effort of keeping my concentration on it – a serious job at the moment) but it feels good to be learning and trying to improve my skills.

My concentration is always pretty poor afterwards but I did manage to get some blog writing done. I’m really enjoying this style of writing at the moment; it just flows really easily. I’m also trying to get ahead of myself by a couple of posts, creating a buffer of sorts, just in case I hit a period of writers’ block. That happened a while back and suddenly writing became really difficult and stressful, not exactly something I need more of right now. So I’m taking advantage of (and enjoying) how good and effortless it feels.

Early evening, Mum and I FaceTimed with my Granny. Mum speaks with her everyday while I join in every few days (sometimes in the frame and sometimes just in the room, adding to the conversation). We do the crossword together – something we’ve always done when we’re actually together – which is really fun and catch up on each other’s days. I worry about her, her age making her more vulnerable and her being alone during lockdown. We (especially my Mum and my aunt and uncle) try and talk as much as possible and suggest new things to do and new forms of entertainment (especially when her television died and no one would go out to fix it) but I still worry.

After we hung up, I tried to set up the laptop that had finally arrived from DSA, only to find out that they’d sent me the wrong one. Fortunately, I discovered that (sadly, I’m experienced enough with the problems of getting support as a disabled person to check) before I loaded all my files onto it. So we got in contact with them (and after a lot of back and forth) and they’re sending another one to swap it with. When this process is officially over – as in I’ve got the laptop and everything is signed off on – I will write a blog post about this whole process because it has been long and complicated and stressful and I think these experiences need to be out there.

Me and Mum had dinner with more Nikita and I did some more diary writing.

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Somewhere closer to a sensible bedtime, we fed and settled the cats and went to bed.


I hope this was somewhat interesting. When I started writing it, I hadn’t counted on a heatwave that made me just this side non-functional for two days; I’d been hoping to be more productive. I know that we don’t have to be productive everyday but achieving something, even something small does help me to manage my mental health and keep my depression and anxiety from getting into a cycle that’s difficult to break out of.

Anyway, that was a week in lockdown: some routine and some different activities to mix things up. This seems to be the best approach for me. The routine is comforting but the variation keeps me from feeling like I’m in a time loop, living the same day over and over again.

I hope you’re all keeping safe and healthy in these times. I hope lockdown isn’t too traumatic for you and I’m sure you’re managing the best that you can.

January 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…

  • Assessments and meltdowns – I began the year working frantically and anxiously on assessments for the module I’d just finished. And as soon as I’d finished the essay, it was onto preparing the presentation, which absolutely terrified me. All of the work with no rest and all of the anxiety caused so, so many meltdowns. So it was a very stressful start to the year.
  • Presentation – My final presentation was very stressful. I worked ridiculously hard on a powerpoint presentation and script that described my progress throughout the semester with snippets of the songs I’d written and I thought I’d done okay but I was and am upset with my grade, mainly because the ‘good’ and ‘bad’ feedback I got seems to contradict each other. There’s this thing we have called Results Counselling (or something similar) where we can go and discuss it all, which I’m gonna do as soon as I can get through it without crying (not just about the grades – it’ll come up later). Whether that will change the grade or not, I don’t know.
  • Choosing my timetable and beginning the new semester – My uni are really helpful about working with me to find a timetable that was best for my health, mental and physical. I really appreciate that they do that. I know that, as a disabled student, they have certain obligations to help me but this is something that causes me a lot of anxiety so I do really appreciate it. Special thanks to Ivy and Aislin for their help. And then the semester began. I’ve swung from overwhelming anxiety to calm and back again so many times that I’m dizzy. Right now, I’m okay. I think.
  • ‘Clarity’ came out! – The second track from my EP, Honest, was released on the 10th and for what is essentially a second single from an independent artist, it’s done really well. It was added to several playlists with lots of followers and it’s been played on a handful of independent radio stations, including Get In Her Ears, which I’ve followed for a long time. So that was really cool. It’s also had quite a lot of airplay on a couple of local independent radio stations, which feels very special even if bigger stations are ‘better’ for my career – their support means a lot to me. It’s been a lot less stressful and a lot more exciting than the release of ‘Bad Night’ (although that was probably because it was the first one and so all new and unknown). Having said that, there’s still a lot more to come…
  • My First DSA Assessment – As you probably remember from this post, it was a bit of a disaster. It was incredibly upsetting and we were basically told I would get no support as a disabled student. Things have changed a bit since then but I don’t want to talk about it until I actually know what’s happening, until it’s more than just speculation and hope.
  • Semester B – We’re only four weeks into the new semester so we haven’t gotten that far yet but it’s definitely difficult. Much like the first semester, the content is really interesting but there’s a new challenge this semester: the academic language. A lot of the time I have no idea what the texts are saying and that’s pretty distressing. It makes me feel stupid and like I’m not smart enough to complete a Masters and ‘what the fuck was I thinking trying to do this?!’ Just as I thought I had a question for my assessment essay, I decided it was too complicated and now I’m waiting to hear from my tutor about it. I feel frozen. It’s hard to research when you don’t know what you’re supposed to be researching, a problem I had last semester although in a different scenario. I’m doing my best though and I’m doing my best not to panic. But I’m keeping up with my writing and I’ve written songs that I like so that’s keeping me grounded even though they don’t get assessed. But it reminds me why I’m doing this: to write better songs.
  • Manic by Halsey was released – I love Halsey and I was very excited for this album and (Hurray!) I absolutely love it. It’s so different from Badlands and Hopeless Fountain Kingdom but they were really different from each other; there’s progression and evolution and exploration. This one is particularly emotionally vulnerable and to me, the often acoustic production reinforces that. I love all of Halsey’s albums and I think this one is the perfect next step. I love most of the songs but my absolute favourite are ‘Ashley,’ ‘Graveyard,’ ‘You should be sad,’ ‘More,’ ‘Still Learning,’ and ‘929.’
  • Sharné visited – One of my best friends from uni came to visit me (and my cats) and we had such a lovely weekend. We went to the beach at golden hour, made cookies, watched movies, and played with the cats. It was so, so nice. I had such a good time. She’s the best.
  • University gig – The full time students on my course put on a show and it was so cool to hear the songs they’d written and it was so, so nice to see my friends play and get the recognition they deserve because they’re such talented, hardworking writers. It was such a good gig and I wish I could’ve stayed to the end but I had to get home to Brighton.

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(Luce Barka performing ‘Be More Kind’ – a very beautiful, meaningful song.)

  • Richard visitedRichard came down to visit me (and, again, the cats – I’m sensing a theme) and we did some writing and production, which was really fun, especially given that I was trying some new things. We also worked on some stuff for the rest of the ‘Clarity’ release cycle and for the release of the next song. Ooooh…
  • BeFries closed – My favourite restaurant in Brighton closed this month temporarily and then permanently and I’m absolutely gutted. I loved that place, I loved the food, and I loved the people. I’m so, so sad that it’s gone and I genuinely don’t know where my new meeting spot will be because that’s where I took everyone.

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  • Announced ‘Clarity’ music video – I announced via social media (I’m having major problems updating my website for some reason) that the ‘Clarity’ music video would be coming out in early February! I’m so excited for everyone to see it! (It will have gone up by the time I post this but this is where I am right now…)

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“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)

  • Cheer – This might seem small compared to some of the other things on this list but I watched it after hearing all the good press about it and it absolutely held up. It was shot beautifully and the pacing was really good. The stories of all the cheerleaders had me so invested in each of them and their places in the series, and in their futures. I cried in almost every episode.
  • The Grammys 2020 – I have many, many  opinions about The Grammys, about who should’ve won which awards (*cough* Taylor Swift for Song of the Year with ‘Lover’ *cough*) but mainly I’m just super happy that Natalie Hemby and Sara Bareilles won their first Grammys. I can’t believe that this is a first for both of them, given how freaking talented they are and how successful they’ve been but regardless of that, this is amazing news and I’m so happy for both of them.
  • Waitress with Sara Bareilles – The best moment of the month was seeing Sara Bareilles on her first night as Jenna in Waitress the Musical in London. She was incredible. The whole show was amazing but she was a magic all of her own. When she sang ‘She Used To Be Mine,’ (which I know is a special song to her and is a special song to me too) the standing ovation went on for so long that eventually the only way to stop us was to continue with the show and therefore force us to sit down. She was truly awesome and I felt so lucky to be there. I’m fortunate enough to get to see her again before her run finishes and I’m so, so excited.

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  • Track of the Day – In the interval of Waitress, I discovered that ‘Clarity’ was going to be Track of the Day for BBC Introducing in the South and played on the radio, on a show I haven’t been played on before. So that was massively exciting (apart from some confusion about the date). Fortunately, I wasn’t in class when they played it so I could listen and enjoy the feeling! Hearing yourself on the radio, hearing people introduce you and your song and spread the message you’re trying to spread is so special.

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  • Lucky – If you follow my social media, you’ll know that we had to have our family dog put to sleep in the last days of January. We first met him when he was a couple of days old and he would’ve been sixteen on the 9th February, so he lived a long and happy life (I hope he was happy – he seemed happy and we did everything to make sure he was). But saying goodbye to him was agonising and there’s been a massive hole in my life ever since. I miss him desperately. I want to write more about him – it just feels like the right thing to do – but I’m just not ready yet.

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  • #30dayfeb – My tutor, mentor, friend, and super inspiring person, Sophie Daniels, is running a challenge throughout February (1st February – 1st March) under her artist project name, Liberty’s Mother (the name comes from the name of her daughter, Liberty, who tragically died the day before she was born), to raise awareness about baby loss and money for the baby loss charity, Tommy’s. The challenge is all about doing something positive for your wellbeing everyday for 30 days. I know a lot of people are going to the gym everyday, doing yoga, and so on but given my chronic fatigue and chronic pain, I can’t do those things so I’ve decided to focus on relaxing my brain: mindfulness essentially but in a slightly less traditional fashion. I’m going to try and make a piece of origami every day because I can’t think or stress about anything when I’m doing it because I have to concentrate so hard. And I could do with some of that. You can sponsor me to do this, to try and do this everyday. Here are some of my attempts so far.

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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.

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.