Finding HopeMass Observation Day 2021
Posted on May 15, 2021
On the 12th of May every year, the Mass Observation Archive asks people to keep a diary for a day in order to capture the everyday lives of people all over the UK. There’s usually a suggested loose theme; for example, last year, it was suggested that diary entries not focus on exactly but highlight the pandemic and the effect it was having on our lives. This year, the website suggests that “diaries can record 12th May and reflect back over the past year and look forward to the future and life beyond this year.”
I’m a long time diary writer and have been for years so this project was an exciting discovery. I love the idea of so many people’s experiences stored in one place, the idea of collecting as many versions of one day as possible and trying to build the fullest picture of it. So, for the last couple of years, I’ve looked forward to this day, to writing about it, and to sending it off to the Mass Observation Archive. But I also like posting the day here too.
Some important things to know before reading this: I’m autistic and struggle with Treatment Resistant Depression, Generalised Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Personality Disorder. I was also recently diagnosed with Hypermobile Ehlers-Danlos Syndrome and Attention Deficit Hyperactivity Disorder (Inattentive Type). All of the symptoms get worse under stress; I’m beginning the homestretch of a Masters Degree in Songwriting and while things with the pandemic seem to be improving (the vaccines, the lockdown slowly lifting, etc), it’s hard to let go of so much ingrained fear and hard to know what the ‘right’ level of fear is. So I guess I’m still struggling with the pandemic, although not in the same way as I was struggling with it last year.
What I thought was going to be a relatively chilled out day spent at my laptop, working on stuff for the final Masters module, the Major Repertoire Project, and catching up on all the work I’d planned to do when I got hit with last week’s killer migraine (it lasted six days and involved paramedics being called to the house). But then, last night, I got an email from uni with the upcoming events and realised that the upcoming Song Sharing Session was today, this afternoon. I haven’t been back to uni since the first lockdown, working from home as an online student, so going back – and going into London – felt like a real big deal. But instead of spending hours ruminating on whether or not I should go, letting my anxiety make the decision, I decided that I wanted to go and so me and my Mum started making plans to make it possible. As things go, it felt as safe as anything can be right now: Mum had said she’d drive me there and back, I’ve had my first vaccine, and no one can enter the building unless they’ve tested negative. Mum ran out to get to COVID home tests and after that, all there was left to do was play through my songs to be as ready as possible.
Maybe because my subconscious was processing the idea of going to London, I didn’t sleep well and struggled up, later than I’d planned. And it was kind of chaos from that point on. I had a problem with my computer that sent me into a panic. I managed to sort it out but the anxiety of the situation wasn’t a great way to start the day. And then, before I could even make it to the shower, one of the cats got stuck in the attic and since we were going to be out for most of the day, we had to get her down before we left in case she couldn’t figure out how to do it herself or one of the others decided to climb up too. Even with treats, it took ages to get her down and then settle all five of them.
I did my Lateral Flow Home Test and had a shower, got dressed, and did my hair and make up while it did it’s testing thing. It came back negative, which was great obviously, but trying to register the result and get the confirmation email that would allow me to get into the uni building was overly complicated and much more time-consuming than described – particularly frustrating as I was trying to get out of the door. I’d wanted it to be as up to date as possible and suddenly it was making me really late. So that was just more stress on top of an already stressful morning.
The rush out of the house and the stress of going back to uni for the first time in so long made me nauseous and dizzy and I spent most of the drive breathing deeply and trying to keep my mind from spinning. My Mum had very kindly said she’d drive me to London since I’m still feeling very wary of public transport, especially the underground, so we talked and listened to music and by the time we pulled up outside the uni building, I was more excited than nervous. It felt so strange to be back, like it had only been a couple of days and a century at the same time since I’d last been there.
I’d expected to feel nervous there – I mean, I’ve been nervous everywhere but my house since the pandemic began – but given the strict safety procedures, I felt really safe and relaxed. It took me by complete surprise but it was so nice and being back there kind of felt like coming home; I have been studying there, on and off, for the last six years after all.
Slowly, the ten of us that had turned up to the session congregated and we were all just so excited, like a bunch of seven year olds at a birthday party. Some of us had never actually met each other in real life – as a fully online student, there was only one person I’d met before we went into lockdown – so it was very exciting to finally meet these people who I’d only ever seen on a screen. Having said that, it was somewhat weird to be saying, “It’s so nice to meet you!” to people I’ve had hours of classes, discussions, and laughs with.
We were all hanging out and chatting, catching up since most of us haven’t seen each other – even on a screen – for several weeks, when Sophie, our tutor and course leader, showed up to run the session. She was as excited to see us as we were to see her. It was so lovely to see her: I’ve known her for almost seven years and she’s been so supportive, both of my songwriting and of me as a person. So, yeah, I was super pleased to see her in real life again.
We got ourselves in a circle and had a bit more of an official catch up before taking turns playing songs and talking about our projects. I hadn’t heard music from most of the people there so that was really cool and inspiring and everyone’s working on such fascinating projects. I kept finding myself volunteering as a potential cowriter over and over, despite the voice in my head saying, “You already have so much to do!” The projects were just so fascinating.
I got to play two songs: the first was the song that really got my project rolling, a song I wrote a little over a year ago to a family friend who also has Autism; the second is a new song about my experience of OCD. The newer one was scary to perform but it seemed to go down well, which was reassuring. The whole session was just so fun and so good for me, for my mental health. I wanted to stay and hang out with everyone, even after the session was over, but since my Mum was driving me home, it wasn’t fair to ask her to wait any longer. So I said my goodbyes, made plans to meet up again, picked up my uni’s own facemasks (I mean, that’s the weirdest school merch I’m ever gonna get), and headed out to find my Mum.
On the drive home, I slowly came down from my adrenaline high until I was utterly exhausted. I did manage to catch up with my Mum and then two of my parents on the phone – they wanted to know how my first time back had gone – before I completely ran out of energy. It felt like a very long journey but we finally drove back into Brighton.
We stopped quickly to see one of my parents and her finally finished garden office. It was really nice to see her – we’ve all been incredibly busy (or dealing with an epic migraine) – and her new office looked gorgeous. It could be pretty cool to have a studio like that one day…
Mum and I finally got home, fed the hoard of hungry cats (who seemed to think they’d been abandoned), and crashed in the living room, continuing our rewatch of Grey’s Anatomy. I tried to work on a post for the blog but I was so tired and so drained that I barely managed a handful of sentences in the few hours I sat there. Eventually I just gave up and went to bed but it was still a struggle to sleep, just as it normally is; my thoughts started racing and I just couldn’t grab ahold of any of them long enough to settle. I don’t know how long it took to get to sleep but it was definitely after 1am, possibly even later.
So much has changed in the last three hundred and sixty five days. I look back at my last Mass Observation Day diary entry and my life is so different, in so many different ways. Last year, I was so scared, so terrified that I felt like I couldn’t breathe. I couldn’t do anything because I was so scared. All I could do was sleep and bury myself in the familiar worlds of Fanfiction. I’m still scared but I’m also happy, at least some of the time. I have bad days but I also have good days, even really good days, and just that is a huge deal. I’m writing a lot, researching for my project, and facing my fears around the pandemic. Sometimes I can’t believe that the last fifteen months have happened but I only have to look at myself to see that they did: I’ve been through a lot and changed so much. And that’s just looking inwards. Looking outwards – at people I know, the communities I’m a part of, the world at large – is far too overwhelming to sum up right now in one day’s diary entry.
If you’ve been keeping a diary or still want to jot down some thoughts about the 12th, I would really encourage you to do so and send it to the archive. The page is here, in case you’d like to submit or learn more about this and their other projects.
A (Fairly) New Development: Chronic Pain
Posted on March 27, 2021
This post feels like it has been a long time coming but I didn’t want to post anything before I had more to say than ‘I’m in pain’ and, at long last, I do. But first, context: I started struggling with chronic pain about halfway through the first UK lockdown, early last year, and it’s been really, really tough. But recently I finally got some answers and started to get some support. And while it’s not a journey that’s over – if that’s even a possibility – I’ve come far enough that I feel like I can talk about it with a certain level of knowledge and emotional distance. So, here we go…
It started out as sporadic pain in my left hand and arm. I’ve experienced this on and off before, due to my extensive writing and my compulsive hair pulling, so I wasn’t overly concerned. Waking up to my hand being numb and tingly was unusual and a bit unnerving but given how much I was writing and how much hair I was pulling out – both of them being outlets for stress – during that first lockdown, I figured that I was just straining that arm a bit more than usual and that it would probably go back to normal as my anxiety decreased.
But then I started developing an ache in my left leg. I don’t really know how to explain it but it felt like it was coming from somewhere deeper than the centre of my leg, deeper than was physically possible. And then what started out as a painful but sporadic ache turned into attacks of debilitating pain, like electric shocks shooting through my leg at random. They were (and are when they still happen) excruciating and had me collapsing on the floor every time, sobbing or even screaming. There were a few so bad that I ended up hyperventilating so hard and long that I nearly passed out. And if that wasn’t bad enough, both the ache and random electric shock attacks spread up to my lower back. None of the common painkillers did anything and I was living in constant fear of the pain hitting me with no warning.
Eventually I was prescribed painkillers but I could only take them for a few days at a time to avoid their addictive nature. They actually – FINALLY – helped; it was such a relief. But the days in between were miserable and the painkillers I was taking in between was barely making a dent. I was also referred to Rheumatology at the hospital.
That was in May (of 2020) and I had to wait until December for an appointment. While, objectively, I can completely understand that, given how overworked hospitals are due to the pandemic, the waiting was also horrendous: I was in constant pain and desperate for help. It was hard to be patient, especially when it was affecting my education because the pain was so bad that I could barely play any of my instruments. It was a really hard time, and that was without all of the COVID-19 and other life stuff.
Eventually the appointment arrived. We didn’t learn much but it got things moving. The hypermobility diagnosis was confirmed and the possible diagnosis of Fibromyalgia was dismissed. I was referred to various departments, including Occupational Therapy, Hydrotherapy (although the consultant wasn’t sure when it would be available due to the pandemic), and, after discussing multiple different medications (many of which I’ve already taken and had negative reactions to), Pain Management. The consultant recommended I have an ECG every five years or so as heart problems can occur with connective tissue disorders and booked my first one for me, as well as an MRI, just to double check my back. She said we’d have another appointment in three months, after the ECG and MRI (it’s been more than three months at this point but I’m hopeful it will be soon since I’m still in a lot of pain).
After the wait for that appointment, I was expecting to wait for ages but we received a call about the MRI less than a week later. The woman who arranged it for us was really thorough and really aware of what might be helpful for me as an autistic individual, suggesting and putting in place so many things to reduce any of my anxiety; for example, I could have Mum in the room with me, I could play music, I could hear the sounds the MRI made before getting in it, she suggested taking Diazepam first, and so on. So that was really helpful. Surprising (I don’t think that’s ever happened before an appointment or procedure before) but very helpful.
The MRI itself was actually a really interesting experience. It was completely manageable and I actually found it quite soothing in a weird way. And, of course, my musician brain couldn’t help but wish I could sample the different sounds the MRI made to use in various tracks. It was over pretty quickly and the whole process was super efficient. I really want to see the images; I don’t know if she’ll bring it up but I’m gonna ask the consultant if I can see them at the next appointment. I’m weirdly intrigued. I mean, I’ve always been kind of fascinated by how my body works specifically (seeing my brainwaves was super cool, for example, and one day I’d love to see images of my brain) so I’m just really curious about what my spine looks like. Like every other spine, I’m sure, but I’m still curious.
(Throughout this time I had been swimming where possible – according to what felt safe and as lockdown allowed – and I’d started incorporating the basic hydrotherapy exercises that the hypermobility specialist had recommended.)
I was prescribed a new daily pain medication but I didn’t really feel like it helped (and I’m still not convinced that it’s actually doing anything helpful). The only thing that helped – and still the only thing that helps is the painkiller that I can only take for a few days at a time; it’s the only thing that has consistently given me pain free periods of time. But, as I said, I can only take it for a few days at a time and the other days are pretty awful.
Around New Year (2020-21), I noticed that the pain was spreading and by the end of January 2021, I was struggling with pain from my toes all the way up to my neck. I rarely experienced pain in my whole body all at once but it had reached a point where there was practically no area of my body that didn’t experience this specific type of pain and often for extended periods of time. My hands, arms, lower back, and lower legs were the worst.
I began Occupational Therapy in February for the pain in my hands. The therapist gave me compression gloves (I have tiny, skinny hands and so they turned out to be too big and I had to buy a smaller pair) and a series of ‘gentle’ exercises that would supposedly allow me to control the hyperextension in my fingers. Right from the start they were painful and I had to drop one of them straight away; it just hurt too much. But I worked hard at the others, whilst simultaneously trying not to work too hard and accidentally regress.
The therapist also discovered that the Pain Management referral hadn’t gone through and put a rush on it – apparently, because the pain is directly affecting my education, I should move me up the waiting list more quickly than if I wasn’t currently doing my Masters. So I guess that’s good news. Hopefully it makes up for the time lost with the referral not going through. She also had some suggestions around swimming during lockdowns, which unfortunately didn’t come to anything but it gave me hope and it was something to work on. That was better than just waiting.
In the following OT session, we talked about the pain caused by the exercises and she reduced them to every other day, which has been better, but I’m still in pretty much constant pain to some degree. But she was pleased with the progress I’d made. Unfortunately though, she thinks I’m probably in the group of people that take the longest to see real change. That’s not massively surprising to me – I’ve been in similar positions before – but it’s still frustrating. Like, out of all of this stuff, couldn’t one thing not be super hard? Couldn’t one thing have the best possible outcome? Anyway. It’s pointless to speculate about that stuff; it’s not like I can change it.
I’d been doing some research on hypermobility but as far as I can tell, it’s a symptom rather than a condition or disorder, like Joint Hypermobility Syndrome or Hypermobile Ehlers-Danlos Syndrome. And since only ‘hypermobility’ had been mentioned up to that point, I asked what my actual diagnosis was and after some conferring between the various people involved, they agrred on a Hypermobile Ehlers-Danlos Syndrome, which explains both the chronic pain and the chronic fatigue (I don’t know what this means for the Chronic Fatigue Syndrome diagnosis – at some point, we’re all going to have to sit down and work out which diagnoses are still relevant and which are now out of date), as well as multiple other problems. So there was this huge rush of relief and that lasted several days before I just felt overwhelmed. It’s an experience I’ve had before: finally knowing is amazing but then the reality of it all sinks in and it’s just a lot to process. Life is suddenly different. It’s not what you thought it was. So, yeah, it’s a lot. I’m sure you know what I’m talking about if you’ve been through a similar experience. But I’m getting there. The dust is starting to settle.
We’re still waiting on some of the other things, like the Pain Management referral and the second appointment with the Rheumatologist. And I’m continuing with the OT; I’ll be graduating to a new set of exercises soon. I’m also super excited to swim again when it becomes possible. We’ve already got several slots booked at our favourite pool. Plus, I’m due to get my first COVID vaccine soon, which will make me feel safer about swimming, even at this pool that takes the safety precautions so seriously.
So this is where we are. As I said, I didn’t want to write this post until there was a natural stopping point in the writing of it. And this seemed to be that moment: we have the beginning, the diagnosis (or diagnoses), and now we have the treatment. Obviously that’s ongoing and there are still different areas to pursue for support. So, I guess, all we can do now is see how things go and hope the pain improves.
Goals For 2020 Reviewed
Posted on January 1, 2021
It feels like I made these goals a lifetime ago. So much has changed since then; the world feels like (and, to an extent, is) an entirely different place now. I’m not sure it’s possible that anyone could’ve predicted how this year would play out – maybe certain elements but not the whole picture. I don’t know about you reading this but I really struggle to reconcile the person I was before the pandemic, with the hopes, issues, and perspectives I had then, with the person I am now with all of 2020 taking up so much space in my brain. It feels like 2020 was bigger than (or at least, as big as) my whole life up to this year; I know that’s the illusion of time but regardless, I’m finding it very difficult to make sense of everything I’ve experienced in the last year.
With the way the world was turned upside down this year, I have no idea how to think about 2021 but before I address that, I wanted to just take a brief moment to look at the goals I set at the beginning of this year, pre-pandemic, and see how I did, despite everything that’s happened.
GET BACK TO SWIMMING
I struggled with swimming at the beginning of the year, having essentially had no break between my first and second semester. I was exhausted before the second semester had even started. I found it very difficult to balance my uni work, my exhaustion, and swimming so going to the pool did fall by the wayside more often than not. And then, just as the semester was coming to a close with my empty semester (and plenty of opportunities to swim) in sight, the pandemic really hit the UK and we went into a national lockdown. That obviously meant that all of the gyms were closed, eliminating the opportunity to swim.
As the restrictions lifted, I did try going back to my normal pool but it just didn’t feel safe so my Mum and I spent a long time looking for a pool that were really careful and meticulous about their safety precautions. Eventually we found one and although we couldn’t go as much as I would’ve liked (due to the limited number of people they allowed in the pool at a time), it was wonderful to swim again. I just loved it.
When I was diagnosed with hypermobility, I was referred for hydrotherapy (we’re still waiting on that) but the specialist encouraged me to keep swimming as it’s the best exercise for hypermobile people and gave me some basic hydrotherapy exercises to start doing while we waited for the referral to go through. Unfortunately, I only got one more swim in before the UK went into a second lockdown and the gyms closed again. I am all for the lockdowns (not that that second one felt much like a lockdown) but I was upset to lose the swimming.
I got a little bit of swimming and hydrotherapy exercises in between the end of lockdown and everything closing for Christmas and now the Tier Four lockdown, which I was pleased with although I’m really missing the swimming. I have no idea how long it will be before the gyms open again and I can swim but I feel like I’m in a really good place with it so it won’t be hard to get going again.
START WEARING MY INVISIBLE BRACES AGAIN
I struggled to wear them while I was going to university. Sensory-wise, I find wearing them to be really overwhelming, to the point where I can’t concentrate because the pressure in my mouth takes up all the space in my brain. I usually wear them at night to avoid that but it often just gets too much and then, once I’m out of the habit of wearing them, it’s really hard to get back into it again.
Several months into lockdown, once I started to feel a bit more stable, I actually managed to wear it almost every night. I even made progress and moved onto the next one in the series. But again, when uni started, it started to feel like too much very quickly. It’s a lot of sensory stuff during the time when I’m supposed to get a break from everything. It’s really hard, but I’m not giving up.
COMPLETE YEAR 1 OF MY MASTERS DEGREE
This is a simple one, thank god. I completed the second semester of my Masters Degree a few weeks into the first UK lockdown and that was the first year completed. Most of my friends were full time and had to power through with their final project mid lockdown, which I am endlessly impressed by. I genuinely don’t think I could’ve done that. So I’m super proud of them, not only for the amazing work that they created but that they created it in such difficult circumstances.
So I managed this one and I’m proud of that, even though it was largely unaffected by the pandemic. The Masters has been a hugely challenging experience for me and so getting through the first year does feel like a big achievement. And what’s more, I actually did well on the essay for the second module, despite my anxieties. So I’m really proud of that too.
As of the end of 2020, I have completed three of the five modules of the Masters, although I don’t yet know how I’ve done in the third. But I’ve done it. I prepared for it, I worked hard throughout the twelve weeks, and put everything I had into the assessment (I always feel like I could’ve done more but I’m trying to get better at recognising what my limits are and I do think I did the best that I could). Now I just have to hope that it was all enough to get a good grade. I know that the skills I’ve learned are the important part but I still struggle to disconnect my self esteem from my grades. It’s a lot of unlearning to do after so many years in education.
CONSUME NEW MEDIA RATHER THAN JUST FAMILIAR MEDIA
I’d gotten into a bit of a rut, just rewatching old favourites, so I really wanted to branch out and try new things. I didn’t manage much during the uni semester since I was so busy; I was almost constantly working and background noise helps me work so familiar movies and TV shows worked quite well in that regard.
When we went into lockdown, my mental health was so bad and my anxiety around the pandemic was so high that I could barely get off the sofa. I rewatched a lot of my favourite things, needing the comfort and familiarity and nostalgia, but after a while, I tentatively started watching new things. They turned out to be a much needed form of escapism and I discovered so many awesome films and TV shows. It also kept my creative brain working even when I wasn’t able to use it; since it has started functioning again, I’ve written several songs based on stories or characters that I found myself emotionally invested in.
GET BACK TO THERAPY AND FOCUS ON MY MENTAL HEALTH
I was consistently going to therapy before the lockdown and felt like we were doing good work but since the pandemic began and my therapy sessions moved onto Zoom, they’ve been much harder and much less productive than I’d like them to be (and I definitely missed some because I just felt too overwhelmed by everything going on). But digging into the hard stuff is often painful and I’m not exactly keen to upset the fragile balance of my mental health that I’ve managed to maintain, for the most part, over the last few months. I’ve just found it so frustrating because the sessions always end up focussing on just getting through instead of moving forward, which is especially demoralising because I feel like the pandemic has been undoing some of the work we’ve done. So I’ve really tried but it has been beyond difficult. I have to hope that this year it will get easier at some point.
WORK ON NOT COMPARING MYSELF TO OTHERS IN MUSIC
This was something I really wanted to work on this year, in therapy but also in practice as I released my EP and played gigs. I’ve just always really struggled with insecurity and I guess what you could call comparison anxiety, always feeling insecure and anxious and bad about myself. At worst, it can make me feel really bitter about music. And I really, really don’t want that because music is the thing that makes me happiest.
Lockdown was oddly unifying because the music industry just shut down and pretty much everyone was forced to stop what they were working on. We were all stuck and frustrated. The comparison anxiety wasn’t really present, both because no one was really releasing anything and because the pandemic anxiety was so high that there wasn’t the space or energy to be anxious about anything else.
The only real exception to this was the releasing of Taylor Swift’s folklore but that was so different to what I’ve been working on that, rather than comparing myself, I found myself far more focussed on what I could learn from it. I also spent the summer learning the songs of my favourite writers and artists to improve my musical skills and that also had me focussing on learning and getting better rather than on how I wasn’t good enough and would never be good enough. So I felt like I was actually doing well, all thing considered, like I might actually be making progress in this area.
But then the industry started up again and people started releasing and promoting and so on again and I realised I hadn’t made as much progress as I’d thought. The pandemic anxiety compounded all of the anxiety I have normally around releasing music, leaving me at even more of a disadvantage and making it feel even harder to ‘keep up’ and work through my issues around it.
I always find it hard when everyone starts posting their Spotify Wrapped but I was actually looking forward to it this year, having released four tracks and the EP having reached over 30,000 streams on Spotify. But it turns out Spotify stops counting your streams on the 31st October, one day after my single, ‘Honest,’ was released, the single which brought in most of my streams. So my Spotify Wrapped wasn’t at all accurate and didn’t reflect the year at all; I didn’t end up posting it at all.
I’d really hoped to make some progress with this goal but without the work in therapy and the added anxiety of all that’s been going on this year, I don’t really feel like anything’s changed. And that’s hard. But I’m trying to focus on how proud I am of the EP and how proud I am of how far it’s gone, considering that it’s my debut EP that was pretty much made in various bedrooms with a handful of friends. Because I am really proud of that and grateful for everything that’s come out of this experience. Hopefully I will make some progress in this area this year because I don’t want to feel like this. I just don’t think I know how to get to that place on my own.
I feel like this has been the most helpful approach to a new year of those I’ve tried so far. I like the setting of goals (rather than a strict list to be checked off) because it gives me some structure and helps me to progress as a person without loads of pressure or the constant fear of failing or not trying hard enough. I feel like, for me, it falls nicely between being too much and too little.
As I said, the world was a very different place and I was a very different person when I set these goals so the fact that I made any progress at all in any of them feels like an achievement but I would like to manage more next year. I’m hopeful (because I have to be – it’s too easy for the depression to infiltrate otherwise) that this year will be better, at some point at least. Maybe then I can make some real improvement with some of the more difficult areas of my life and, until then, I’m gonna work on what I can. That’s probably all any of us can do right now.
Finding Hope 