Posted on September 20, 2020
Given how stressful I was finding the pandemic and the lockdown, I thought it might be helpful to keep a list of what I’d done (achieved, managed, spent time on – whichever word is most appropriate), whether it took a huge amount of effort or was simply something I’d wanted to do, just to remind myself that I was still doing things, that I was still capable of being productive during such a difficult time. Some of them are silly, some of them important, and some of them are just interesting. And I thought posting it would be a good record of sorts when it comes to looking back at this time.
I don’t consider us to be out of lockdown by posting this. It’s just that now I’m starting a new year at university – the second of my Masters Degree – so my life is going to change. I’m doing all of my classes online, rather than going in for half of the classes as is the current norm at uni; I’d be commuting and the risks still feel too high for just two hours a week. So in terms of leaving the house, not much is changing. But it’s a moment of transition in my life and so it seemed like a natural stopping point for this post. I may continue it as a series, depending on how things play out going forward but for now, this is what I did while in lockdown, from 13th March to 20th September 2020…
Films: Hot Fuzz, The Martian, Miss Congeniality, etc.
TV Shows: Episodes, Lucifer, and Nikita, etc.
This is something I did a lot of as a teenager but reverted to during my Masters as a form of stress relief: escaping into another world, a familiar and safe world. My most impressive achievements were reading all of the Ros Myers (Spooks) Fanfiction I could find and reading The Changeling and it’s three sequels (a Harry Potter alternate universe where Ginny is sorted into Slytherin, which totals nearly 600,000 words). Of course, there were more one off stories; these are just my greatest hits.
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I doubt I’ll ever be able to look back on this time positively (from a personal perspective – in the wider sense, it’s clearly been catastrophic) but there have been moments and experiences that I am grateful to have had. As I’ve said, I don’t consider lockdown to be over so this post may become a series but with my Masters to focus on, I will have significantly less time to dedicate to bigger projects like organising my photos or sorting through my possessions. So lockdown continues; I’m just entering the next chapter.
Category: animals, anxiety, autism, covid-19 pandemic, favourites, medication, meltdowns, mental health, music, therapy, university, video, writing Tagged: absentia, activism, agents of shield, anxiety, anxiety disorder, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, autistic meltdowns, back to life, back to life music video, baking, blogging, cat, cfs, chronic fatigue syndrome, clarity, clarity remix, clarity remix music video, concert, cowriting, daisy johnson, debut ep, decluttering, depression, diary, diary writing, digital decluttering, disability pride, disability pride brighton, disabled student allowance, dsa, ep, family, fanfiction, films, friends, guitar, hamilton, home recording, honest, honest ep, interview, lockdown, lockdown 2020, masters, masters degree, masters degree in songwriting, masters part time, meltdown, meltdowns, mental health, mental health in lockdown, mental illness, meteor shower, movies, music, music theory, netflix party, obsessive compulsive disorder, ocd, online concert, pandemic, pandemic 2020, pandemic anxiety, part time masters student, part time student, photo albums, piano, recording, remote writing session, research, research study, singersongwriter, songwriter, songwriting, sounds like hope, sounds like hope music video, student, taylor swift, therapy, tv show, uk lockdown, university, zoom, zoom calls
Posted on September 12, 2020
Since the academic year is starting up again, I thought I’d write about my experience with getting support for my Masters Degree as a disabled student. The DSA (Disabled Student Allowance) process can be very difficult so, having been through it twice now, I thought I’d share my experience. I don’t know if I’ve had a good, bad, or typical experience but I thought that simply putting the experience out there might be helpful to anyone at the beginning of this process, to give them an idea of what may happen down the line. As I’ve already said, it’s difficult and tiring but that’s not to say that I would discourage someone from applying. I was just very naive going into it the first time and was blindsided by how complicated and stressful it was; I’m lucky to have had help going through this both times. Having support from sources such as DSA can be hugely beneficial but I wouldn’t want anyone going into the application process unaware so I thought I’d share my experience as I haven’t seen many accounts of the whole process…
I wrote about my first assessment in great detail here, so I suggest reading that but I’ll also sum it up here to make sure I’m sharing the full experience in one place. So… That first assessment was a complete disaster. The assessor was perfectly nice but when we got to discussing what support DSA was willing to offer me, it went downhill fast. They would offer me a laptop, but not one with an operating system required to run the programs I needed for my course because apparently that was a course specific need rather than a disability specific need despite the fact that I – a disabled student – needed them to do my course. They wouldn’t offer me any travel support towards commuting because I’d ‘chosen’ to live at home when I actually had to live at home because of my disabilities. And they have no direct contact with the universities themselves so they couldn’t offer any support through them. So, essentially, they weren’t going to offer me anything because my needs didn’t fit their guidelines, because my disability didn’t fit with their idea of disability. It was hugely frustrating and distressing and I left in tears. I felt completely let down and abandoned.
By the end of the assessment, I was so utterly distressed that the assessor told us that we could appeal, which we did. The second assessment was with a different person, a really lovely woman called Rebecca, and was much longer and in much more depth. We went through everything again in minute detail: from the necessary computer specifications to the exact details of an average university day’s travel. She went through all the possibilities and all the potential outcomes, as well as the potential roadblocks and the reasonings behind them. It was a lot of information but I did leave feeling more hopeful; I really felt like she was on the case, like she was really committed to helping me get as much support as possible. Her report went through several different people before reaching a senior SFE (Student Finance England). It was initially rejected but then, when we provided them with documentation proving I receive PIP (Personal Independence Payment), they changed their minds and granted me a new laptop, software and apps to help with my lectures, independent study, and mental health, and mentoring through the National Autistic Society (although it seems that, due to the pandemic, this service no longer exists). I didn’t get any support for the travel but I’m grateful for what I did get, plus the travel costs haven’t exactly been an issue over the last few months… From that second assessment, it was four months before I received the support I was awarded.
In my experience, the whole DSA process is very slow. It was slow when I went through it during my Bachelor’s Degree and it’s been even slower this time, presumably due to the pandemic. I started this process in January – much later than intended but my mental health was so bad that I couldn’t handle the in person assessment – and didn’t get the equipment until June. Then the laptop that arrived wasn’t the right one and so we had to spend another two weeks – and a somewhat ridiculous amount of emails proving that it was in fact the wrong one – organising the swap, insuring that I got the one that my DSA assessment had determined I needed. A couple of weeks later, the new laptop arrived but setting it up took much longer than it should have. This was due to how the people who’d previously worked on my laptop had set it up, making the transfer of all my files much more complicated and messy. It’s still not as sorted as I would like it to be but it is functional.
Factoring in all of this, had I been doing my Masters in one year rather than two, I would’ve had this equipment for less than a semester before I finished the course. Yes, this was affected by the pandemic, problems with the university Autism support person, and the late start in pursuing DSA but that was due to the reasons I was in need of support so it’s not the most efficient system in that regard: what happens if you’re too disabled by your disability to seek help?
The laptop and software that DSA have provided me with has been invaluable, especially since my laptop was dying a slow death around the time I received the new one. We didn’t get everything we were hoping for but it’s definitely better to have it than to not. So, having now been through this twice, I thought I’d offer some tips that would’ve been helpful to me before going through the process…
I hope this post is helpful for anyone considering or going through the process. I hope I haven’t made it sound too scary. I really do recommend it but I wouldn’t want anyone to be unaware of how difficult and stressful it can be. You deserve to get the support you need and I only want to make that easier, if only by arming you with information and advice. So, if you’re going through it, I wish you the best of luck and I’m rooting for you.
Category: anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, depression, meltdowns, mental health, ocd, tips, university Tagged: actuallyautistic, actuallyborderline, actuallybpd, actuallydepressed, anxiety, anxiety disorder, asd, assessment, autism, autism spectrum disorder, autism support, autistic, autistic adult, autistic student, borderline personality disorder, bpd, coronavirus, covid-19, degree, depression, disability, disability stigma, disability support, disabled, disabled student, disabled student allowance, dsa, dsa assessment, gad, general anxiety disorder, invisible disability, invisible illness, lockdown 2020, masters degree, masters part time, mental health, mental illness, mental illness stigma, neurodiverse, neurodiversity, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, part time, part time masters student, part time student, personal independence payment, pip, sfe, stigma, student finance england, tips, uni, university, university support
Posted on July 4, 2020
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.
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:
Then we fed and settled the cats before going to bed.
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.)
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.
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.
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.
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.
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.
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.
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.
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.
Category: animals, covid-19 pandemic, emotions, meltdowns, mental health, music, therapy, trichotillomania, video Tagged: 365 days of kittens, a week in my life, anxiety, anxiety disorder, asd, autism, autism spectrum disorder, autistic adult, birthday, blog writing, blogger, blogging, cat, cat owner, cats, collaboration, concentration, coronavirus, covid-19, cowriting, dbt, decluttering, depression, dialectical behaviour therapy, diary, digital decluttering, disabled student allowance, dreams, dsa, facetime, family, feedback, focus, friends, hair pulling, headache, heatwave, ingrid andress, insomnia, journal, journaling, kalie shorr, kitten, kittens, laptop, little voice, lockdown, massage, medication, meltdown, messages, mum, music lesson, music lessons, music theory, musical theory, new laptop, newborn kittens, nightmare, nightmares, nikita, obsessive compulsive disorder, ocd, online therapy, pandemic, piano, pregabalin, quarantine, sara bareilles, singersongwriter, sleep, social distancing, social media, songwriting, therapy session, thunderstorm, trich, video calling, video calls, week in my life, writers block, writing, year of kittens
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and the first three songs are available on all major platforms.