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.
Category: chronic fatigue syndrome, covid-19 pandemic, diagnosis, medication, mental health, treatment, trichotillomania, university Tagged: career, cfs, chronic fatigue, chronic fatigue syndrome, chronic pain, compression gloves, coronavirus, covid-19, covid-19 vaccine, diagnosis, ecg, eds, ehlers danlos syndrome, fatigue, heds, hydrotherapy, hypermobile ehlers danlos syndrome, hypermobility, lockdown, lockdown 2020, masters, masters degree, medication, mri, music, occupational therapy, pain, pain attacks, pain management, pain management referral, painkillers, pandemic, pandemic 2020, physical pain, rheumatology referral, singersongwriter, songwriting, swimming, university
Posted on December 31, 2020
What the fuck was this year? I don’t even know. To think I ended 2019 with the phrase: ‘2020, please be kind.‘ I really don’t know how to write about this year. Time has become a bit of a nebulous concept and after a lot of thought, the only way I could divide up this year was by separating it into three ‘chapters’: pre-pandemic, lockdown-into-summer, and semester three of my Masters. It’s a bit of a weird system but then, is there anything about this year that hasn’t been weird?
So, here we go. This is my review of 2020, a year I’m sure none of us will ever forget.
The beginning of the year, the two and a half-ish months before the pandemic became less about ‘wash your hands’ and more ‘we’re going into national lockdown’ (in the UK anyway), feel impossibly long ago and kind of frighteningly busy. Looking back through my photos, it’s so odd to think that that version of me – of all those people in the pictures – had no idea what was coming. And now we’re entirely different people. I mean, I know I’m a completely different person because of the last nine months. I’m only speaking for myself but I imagine that a lot of people can relate to that feeling. I look at photos of myself from January, February, March and I almost don’t recognise myself…
Anyway, on with the review.
I wrote up January at the time because it was such a busy, emotional month. I had a frantic Christmas break, preparing for my January assessments (due to a misunderstanding about the assessment, a lot of my research wasn’t helpful and so I had to redo it so I got almost no free time during that holiday). That was incredibly stressful, as was the presentation, and I was beyond exhausted afterwards. And between the second single of the Honest EP, ‘Clarity,’ coming out and the very distressing DSA assessment in the following week, I didn’t really get any rest between the first and second semesters. And to top it off, I was pretty upset about the grade I received and by the time I felt coherent enough to appeal it, the deadline had passed. But in hindsight, it was the first grade of the Masters with a very new approach to working and grading so it’s probably not that surprising, especially as an autistic student.
The new module I was studying, Musicology (“the scholarly analysis and research-based study of music”), was really interesting and for the most part, the lectures were really engaging, something that was definitely aided by how passionate my tutor was about the subject. I’ve known him since my BA and he’s so knowledgeable; he’s a really great teacher and he’s a big part of why I did so well in the module. Not that my tutor in the first module wasn’t great – she’s truly awesome and so inspiring and I learned so much from her – but I learned a lot about how the Masters worked in that first semester that I was able to put into practice for the second semester, making it easier on my mental health and helping me to work more effectively, which did result in a much better grade. I found the songwriting classes less inspiring but since I was challenging myself with FAWM (February Album Writing Month) for a big part of the module, that wasn’t too big an issue.
I got to spend some really good time with my friends, both in and out of uni. A couple of them came down from London to visit me, which was really nice. Others I spent time with at uni or around London. I also had lots of writing sessions with people, which was really, really fun. I love my uni friends so much – I love my non-uni friends as well, of course, but during the semester, I rarely get to see them because I’m so busy – and there are a solid handful of people I’ve met during my time at BA and MA that I know I’ll be friends with for a really long time. I feel like I learned a lot about friendship this year, as I mentioned in my grateful post, and I just feel so lucky to have met these people; they are so wonderful and I’ve found it really hard to be separated from them for so long. I’m so looking forward to seeing them again and being able to spend time with them in real life whenever that will be.
(I haven’t got photos with all of my friends from this year and I do like to use photos from the year I’m writing about but don’t worry, you’re most certainly not forgotten.)
As well as writing A LOT, I was releasing music and got to play several really, really fun shows but I want to keep the music stuff together so I’ll come back to those.
One sadness of that time was that my favourite place to eat in Brighton closed, first temporarily and then permanently. That was very sad and I know a lot of people were upset by it. They made amazing Belgian fries with loads of homemade sauces and drinks – that I LOVE – that I’ve only ever had when I’ve travelled to and around the Netherlands where I have family. And the staff were absolutely lovely and it was always such an enjoyable experience; I always took friends there when they visited Brighton. So that was a shock. With everything going on this year, I probably wouldn’t have been able to go (and I’m not sure it would’ve survived as an independent business) but I have missed it. It was a true Brighton gem for the time it existed.
I think it’s safe to say that the biggest part of January, the pre-pandemic part of the year, and possibly the whole year, was having to let go of our beloved Lucky, our nearly sixteen year old black Labrador who we’d first met at three days old. He was very old (most Labradors live to between ten and twelve) and had developed some very difficult health problems in the last year or so of his life. We got home one night and he didn’t get up. He didn’t lift his head. He didn’t wag his tail. He was just done. It was heartbreaking and one of the hardest decisions I’ve ever been a part of but the next morning we took him to the vet and they put him to sleep. It was awful and I still miss him everyday, even though I know it was the right thing to do. He couldn’t have been more loved, by us, by everyone he met. He was a bit of a legend. I still wish him back but, again, as I said in my Grateful post, I’m glad that he hasn’t had to live through the pandemic, the sensitive soul that he was; it would’ve been very stressful for him. And the idea that we might’ve had to have him put down during one of the lockdowns where we couldn’t be with him is unbearable, so I do take some comfort from that timing. Still, the house feels empty without him.
Life was fundamentally different after that but we kept going, day by day, and there were good moments. I got to see my course mates put on an awesome show at a local venue, Song Suffragettes announced that they were coming to the UK on tour (I’m pretty sure I dug into my savings to get a ticket for every show…), and my Mum and I celebrated Lucky’s sixteenth birthday, even though he was no longer with us. I’d been planning it and so we just decided to celebrate for ourselves. I think that, in the future, we will think of him or go on a specific walk or something to remember him, even if we don’t actually ‘celebrate’ his birthday. The date will just be an excuse to dedicate some time to thinking about him and all the years we had together.
As well as dedicating the month of February to FAWM, I also took on the #30dayfeb Challenge For Tommy’s, organised by my university tutor/friend/mentor/super inspiring person, Sophie Daniels, under her artist project name, Liberty’s Mother, to raise awareness about baby loss and money for baby loss focussed charities. The challenge involved doing something everyday for thirty days that was positive for your wellbeing; I saw a lot of people doing yoga, for example. I chose origami and made a different piece everyday. These were some of my favourites:
I was lucky enough to see several shows and concerts before everything closed down. That’s something I’ve really missed this year as they’re sort of THE thing that I spend my money on and go out to. I was going to see The Shires, Alanis Morissette, OneRepublic, The Phantom of the Opera, Hamilton, the Song Suffragettes UK Tour, Taylor Swift at Hyde Park, and Tin Pan South in Nashville – those last three cancellations in particular hit me the hardest. I’d been so looking forward to them so I was really, really upset when they were postponed and then eventually cancelled.
However, I did manage to see Halsey twice on The Manic World Tour, which was incredible. I love her, I love this album (it was one of my favourite albums of the year), and the show was just mind-blowing. It was awesome to see her get to play at The O2 Arena (her biggest headline show to date, I believe), especially on International Women’s Day. She’s an amazing performing but I also love how she speaks to the crowd; it feels like she’s speaking just to you. I wanted to run out of the arena ahead of all the crowds so that that illusion wouldn’t be broken. Both shows, but especially that show in London, felt very special.
I also got to see Sara Bareilles in Waitress The Musical several times. I’ve seen several actresses (all amazing) play Jenna but there was something really special about seeing Sara play her, as the person who’d written so many beautiful songs coming from her perspective as a character. It took a minute to stop seeing Sara as Sara and start seeing her as Jenna but once I’d gotten my head around that, I was just enthralled. She was fantastic and so special; I loved the show all the more for seeing her in the lead role. I was lucky enough to go a handful of times and of those, on several special occasions (sometimes on purpose and sometimes by accident): I saw Sara’s first show, I saw the one year anniversary of Waitress in London show, and I saw Sara’s final show, which also turned out to be Waitress’ final London show. So while I knew that show was special, I didn’t realise quite how special it was until much later. I tried my best to meet Sara (one day, I hope…) but for most of the shows, Sara was either out of the building before we could line up or we were hustled away pretty quickly. I did see her on the last night – she walked up and down the queue of people waiting and waved to everyone – but she didn’t stop to talk or take pictures or accept gifts because of the growing concern about COVID-19. That show was actually the last thing I did before we went into lockdown, not that I knew it at the time.
Everything changed very quickly. One day I was talking to my friend about plans we had later in the week and the next, she was on the plane home before the borders closed. I made the decision to start self isolating but before I would’ve had to go back to uni (or, having come to this decision, contact them about it), the classes were moved online.
The UK officially went into national lockdown on the 24th March. I’d already been self isolating for eleven days, as had my Mum, apart from necessary trips out (food shopping and business related stuff that had to be done in person). I had two weeks of online classes plus my assessment essay, which I was already working on. It’s strange: at the time, I wasn’t really aware of the outside world because I was a hundred percent focussed on my essay (and it was probably the most difficult, research heavy essay I’ve ever had to write). Maybe I was channeling all of my anxiety into that so that I didn’t have to engage with my paralysing anxiety about the pandemic. But then the essay was done and submitted and it all came flooding in.
Between the inevitable post semester and assessment period crash and the pandemic anxiety hitting me full force, I just went to pieces. I was either having meltdowns or staring blankly at old tv shows, too overwhelmed by fear to function. That went on for weeks and to be honest, it’s kind of a blur. I think I was in some sort of checked out, survival mode haze. I just could not cope. In hindsight (and in the few moments of coherent thought I had at the time) I was and am so grateful that I had that summer semester off. Many of my friends on the Masters were having to work on their final projects during one of the toughest periods of our lives (and created incredible work in spite of it) and I just could not have done it. My mental health was in tatters. Even now that I’m in a better, more stable place, I still feel deeply traumatised by the events of the last nine months: by the constant fear and paralysing anxiety, by the sheer overwhelming grief that so many people have experienced and are experiencing, by the confusion and frustration and outright horror at how the government – the people we depend on to lead us and take charge during extreme situations – have behaved. I mean, how do you cope with completely losing faith in your country’s leaders? Who are you supposed to turn to? Anyway. That could easily turn into a rant and that’s not what this post is about.
I’m not really sure when I started to come out of that because it was such a gradual process. But slowly, with LOTS of ups and downs, I started to feel more able to engage – if only with the people directly around me and the things that I enjoyed doing. Thank god for the cats (and Mum – I’ve talked about how grateful I am for her in my Grateful post – but we both agree that the cats were a lifesaver during the lockdown). They’ve been so good for my mental health this year. It’s so mindful to watch them; you can’t help but feel calmer, watching them play or snuggle and so on. Especially without Lucky, their cuteness and cuddles have been vital and the ridiculous playful moments have made me laugh even when it felt impossible. I’m so, so glad to have had them around during this time and they certainly seem to enjoy our constant presence at home; a day rarely goes by without one cat or another draping themselves over me. As I said, they’ve been a lifesaver. I don’t know how I would’ve made it through without them.
I had online therapy sessions but I struggled with them and often ended up cancelling at the last minute because they just felt too overwhelming. All I could think about was the pandemic and my fears around it; I didn’t want to dig into that even more and it felt impossible to talk about anything else. So my sessions were fairly sporadic throughout the lockdown and most of the year really. I think, in hindsight, therapy just felt too big, too overwhelming to be helpful while all of my emotions felt so incredibly heightened and raw. I was just focussing on getting from one day to the next. The cats were a big help; I started escaping into the worlds of new films and TV shows, like Absentia and Away; and I lived for the livestreams that a handful of people were doing in place of live shows. My favourites were Kalie Shorr’s, both because I love her and because she did so many of them. She did interviews with both interesting and entertaining questions, played covers, and played her own songs, released and unreleased. I’m so grateful to Kalie for doing all of that; they really helped me keep going, helped me get through the darkest of my pandemic-induced depression.
As I said, towards the end of the first UK lockdown, I became a bit more functional, although it was like balancing on a tightrope: one little knock and I was plunging back into overwhelming anxiety and depression. And it happened a lot. But I also had better, more productive moments. I managed to write a couple of songs (which is pretty monumental what with my mental health being so bad); I had writing and production sessions with Richard; I started gentle music theory lessons in preparation for the upcoming semester with one of my parents (she’s a music teacher); I spent a lot of time playing piano (I started experiencing awful nerve pain in my left hand – as well as in my back and leg – during the first lockdown so playing guitar was basically impossible); and I stayed up until almost six am to watch Ingrid Andress’ first livestream show and chat with her in a meet and greet session afterwards. So I was doing just about okay. Probably the biggest help was that all of my family (and most of my friends) were being exceedingly careful around going out: fortunately able to work at home, they only went out for essential trips, like food shopping and picking up medication, etc. I’m so grateful to them for that. So beyond grateful.
The lockdown began to loosen and more and more people were out, which I found terrifying. The silence outside had been weird at first but suddenly every little sound turned me into an anxious mess. Hearing people converse outside the shop we live above, for example, caused so many panic attacks (for fear that those people were spreading the virus). It was awful. For most of the summer, I kept the windows and curtains closed, enclosing myself in my own protective little bubble. It was the only way I could find to protect my mental health. With the gyms opening, I was desperate to swim again (as I’ve previously mentioned, it’s the only exercise I can do) – both for my physical and mental health – but I just didn’t feel safe at my usual pool. Their precautions just didn’t feel tight enough. On the plus side, after various COVID tests, I finally got to see my brother for the first time in months – longer than I think we’ve ever gone without seeing each other. We were still careful but it was so, so wonderful to see him.
Meanwhile, music stuff (mostly to do with the Honest EP) was still happening. Again, I want to keep most of this together (I’ll probably put it all in one paragraph towards the end) but I think this particular day is important beyond the musical context. I’d spent a lot of time worrying about the music video for ‘Back To Life,’ the next single due to be released at the time because my original idea wasn’t going to be possible during the pandemic, even with the lockdown restrictions having been loosened. Richard and I spent a long time discussing it and eventually came up with a plan…
The filming of the video was a big deal for me. I found it very difficult and very stressful being out for so long (even though our planning meant that, of the videos we shot for the EP, this one took the least time) and just being near people caused me a lot of anxiety, even down on the beach at the water’s edge. We were incredibly careful and I did manage to enjoy it to a certain extent but I’m grateful not to have to do another music video under such conditions. It took everything out of me; I spent the next three days on the sofa, barely able to move from the exhaustion. I have no idea how I managed to look so relaxed and even happy in the video. But, as I said, I’ll talk more about it when I talk about the whole EP process this year.
The rest of the summer was pretty gentle. I was trying really hard to improve and manage my mental health. It still wasn’t great but I was coping better than I had been earlier in the pandemic. So I spent a lot of time doing things that have proven to be good for my mental health: I listened to the Taylor Swift’s new album, folklore, on repeat; I played a lot of piano; I wrote songs when I could; I had video calls and online movie nights with my friends; I kept writing for the blog. I took part in research projects involving Autism Spectrum Disorder, Chronic Fatigue Syndrome, Depression, and Anxiety; helping out with these always gives me a mental and emotional boost because it feels like some good is coming out of my difficulties, even if they don’t improve my experience directly. I also watched the final season of Agents of Shield, my favourite TV show ever. That was a very emotional experience because the show, and the character of Daisy Johnson, have been a really important part of my life over the last few years and the emotional processing of stuff from my childhood.
And I continued to work on my music theory as the module was based on these concepts and I wanted to be as prepared as possible but I found the idea of going back to university very stressful. I really didn’t want to defer so I spent a lot of time thinking about what I wanted to do in terms of the new semester, what I felt safe doing. I’d originally thought that I’d much rather defer than do online or blended classes but now that the semester was almost upon me, I felt a lot less sure. After a lot of thought and discussion with my family and course mates, I decided to go back as an online student. It wasn’t ideal because of the lack of social interaction and how much harder it made cowriting sessions but I didn’t feel safe commuting to London to be in a building full of people from all over for just two hours a week. It just felt like too much anxiety for not enough reward. Online seemed like the most productive way forward. But even with that choice made, the process of going back to university, getting clear information, the correct timetable, etc, was incredibly stressful, causing meltdown after meltdown after meltdown. I really wasn’t at all sure whether I was going to be able manage university classes during a pandemic.
SEMESTER THREE OF MY MASTERS
The beginning of the semester was a bit rocky as the university tried to make blended classes (the online and onsite groups combined as one using Microsoft Teams) but in the end, it was simply easier and a more productive use of the time to split the onsite and online groups. My groups were great and everyone was really supportive and encouraging, tutors and students alike. Plus it was fun to work regularly with Richard again. The work was hard and the songwriting briefs difficult since musical language isn’t my strong point but after really positive meetings with both of my tutors, I never felt like I couldn’t ask for help or miss a brief if I needed to. As long as we was experimenting with our music – with the use of melody, harmony, arrangement, etc – and turned in the assessment work, everyone was pretty relaxed about what we were working on.
Despite a pretty heavy workload, I managed to get up to quite a lot during the semester. I celebrated my 26th birthday with the family I could and had a couple of socially distanced meet ups with friends; it was simple and quiet but I’m not really into big celebrations anyway. It would’ve been nice to see more of my family though.
I saw a lot of really awesome live-streamed shows, including Ingrid Andress at The Bluebird Cafe, various shows throughout the virtual Country Music Week and Nashville’s Tin Pan South Festival (I’m so grateful that we didn’t lose out on them entirely because of the pandemic), Halsey’s poetry book release day livestream, Maren Morris’ livestream concert, and Kalie Shorr’s charity StageIt show. But my personal highlights were Sugarland’s livestream show, Kalie’s ‘Unabridged For The First Time’ show (even though technical difficulties meant I missed bits of it), several of the Tin Pan South shows, and Tim Minchin’s ‘Apart Together’ livestream show.
I also attended several webinars and conferences about ASD and mental health, as well as actually speaking at one. That was a really special experience, being invited to speak on a panel and share my experience about being autistic. I felt like I was really able to use my experience to help other people and several of the attendees confirmed how useful my contributions had been. So that felt like a really significant moment.
Even though I was still on the course, many of my friends did the Masters in one year rather than two. They had a virtual graduation ceremony, which I attended in support. They all created such incredible work and under such difficult circumstances; I’m so proud of them and can’t wait to see what they go on to do. Some of them have already released really cool and interesting work and I know that many more are working on really cool projects. We had a celebratory drink via video call afterwards, which was good fun. I hadn’t seen a lot of them since March so I really enjoyed that.
I finally found somewhere to swim that actually felt safe, or as safe as possible: they had really strict safety measures. So I finally got to swim again and it was awesome. Each session gave me such a mental boost and it felt so good to exercise and really stretch my muscles again. I couldn’t get there as often as I would’ve liked (they spread the bookings out to keep the numbers low) but it was absolutely wonderful to be going again. It was erratic, especially with the second lockdown and most of the country now in Tier 4, but I enjoyed every second of it while I had it and I will again when the pool reopens.
The swimming was also good for the nerve pain in my back and leg. A few months earlier, I’d been diagnosed with hypermobility (very common with autistic individuals) and referred for hydrotherapy, which I’m unlikely to get for a while, but the swimming and basic exercises I’d been given did help. Or they seemed to anyway. I’ve also been referred to Rheumatology, Occupational Therapy, Pain Management, and had an MRI just to rule out anything unrelated to being hypermobile. It’s been a very slow process but I feel like we are starting to make progress, which feels really good.
The US Election was obviously a massive deal and not just in the US. I’m really glad that it fell during my reading week because there’s no way I would’ve been able to concentrate on classes. I’m honestly surprised by how much work I got done that week, given how much time I spent checking the news outlets for updates. In the end, it was Richard who texted me that the result was in. I shrieked, I laughed, and then I cried. I was so relieved.
Apart from swimming, the second lockdown didn’t change much for me. I was spending most of my time at my laptop, working on uni stuff. I had to turn in a portfolio of songs and an essay on the 4th January and, determined to get an actual break this year (unlike last year), I worked super hard: I wanted to have all of the work done before Christmas. So the end of the semester was intense and suddenly it was the last week, the session with Richard, and then the Christmas holidays. I worked every day from the end of the semester to Christmas Eve but I did manage to get all of the work done, which I was very proud of.
Christmas was weird. We obviously couldn’t see our larger family but then we couldn’t even see my brother because London went into Tier 4 (and then we went into Tier 4 on Boxing Day). I’d been prepared for a very different Christmas but it didn’t really emotionally hit me until a few days before and then I found it pretty difficult. We tried to embrace the difference: we decorated our tree with origami creations rather than our usual decorations; we structured our day differently… we kept it as different as we could so that the forced differences (like the lack of my brother) didn’t stick out so much. But we still managed to have a good day, I think. My brother and his partner had made a really great quiz, which we all had so much fun doing. That was definitely the high point for me. We were all together, laughing our heads off, and that felt really good.
I also just want to throw in here that there were some really great albums released in the fourth quarter of the year, which definitely boosted my spirits and inspired me a lot. There was Taylor Swift’s folklore: long pond studio sessions, which was both incredible and a fascinating look into the stories and emotions explored throughout the album; Kalie Shorr released the deluxe version of Open Book, Open Book: Unabridged, which included four new tracks, all of them as stunning as the original album tracks, if not even better – ugh, can you tell I love this album? And then, as if folklore wasn’t a big enough surprise, Taylor Swift released a second surprise album, evermore, which was another amazing album. The three of these, plus Manic by Halsey, were the musical highlights of my year. I love them all and I learned so much from them as a songwriter.
We’ve had a quiet few days up to new year, which is good. It’s been nice to have a bit more space to breathe, if that makes sense; there’s a bit less pressure in my life at the moment. Having said that, being in Tier 4 with a spike in COVID cases, has caused my anxiety to rise again.
And that’s the year…
So it’s time to talk about the music. With more content coming, I don’t want to go into too much detail; I kind of want to save the real round up for when everything is done, but I do want to do a quick review of my musical year because I think this is the first year where I’ve really felt like a professional singersongwriter. Of the five tracks on the Honest EP, all but one were released this year (the first single, ‘Bad Night,’ came out late last year). The second single, ‘Clarity,’ came out in early January with an accompanying music video; it did even better than ‘Bad Night’ and was even selected as BBC Sussex & BBC Surrey’s BBC Introducing Track of the Day. That was very cool!
I got to play a handful of gigs, all of which were so much fun. I headlined one of Indigo Eve’s nights, where people both waved their phone lights to a song and sang along to another. It was one of best gigs I’ve done and one of the best nights of the year. I played as part of my university’s songwriters’ circles, which is probably my favourite uni event; it was particularly special because it was the LGBTQ+ History Month special. That meant a lot to me and it was a great round. All of the performers were fantastic and the atmosphere was so positive. Looking back at my Instagram post about the show, I said, “I’m just on a joy train!” That was very accurate; it was a wonderful night. I was also invited to perform in the foyer of The Brighton Dome for their Access Open Day event; it was so much fun and I was giddy about the fact that I was performing there again when it was the first place I publicly performed. And before the lockdown started, I even managed a day in the studio, recording a fun project with some friends.
Everything slowed down when lockdown began but with a lot of help from Richard, we did eventually get the EP cycle moving again, starting with the release of ‘Clarity (Academic Remix)‘. A month or so later, the third single of the EP, ‘Sounds Like Hope,’ came out, followed by a music video beautifully animated by the lovely Lois de Silva. This one didn’t do as well as the previous two but it was a much slower, less radio friendly song so that wasn’t surprising. Having said that, it got some of the highest praise of the EP so although it didn’t reach as many people as the others, it seemed to really resonate with the people who did hear it.
The summer was a very exciting time, in terms of the EP. I got to ‘perform’ in the virtual Disability Pride Brighton Festival: they played the ‘Invisible‘ music video and it was streamed online and on TV! That was very cool: seeing myself on the television for the first time! Then, as I described earlier, Richard and I planned and filmed the music video for ‘Back To Life.’ I was very anxious about putting this one out, given its upbeat sound and title during the pandemic. But in the end, I decided that to leave it out would be to release an incomplete body of work, as the song is an important part of the EP. So I announced it with this message: “Given the difficult and often distressing times we’re currently experiencing, I seriously considered delaying the release of new music, especially as we reach the more upbeat songs on the EP. But I didn’t want to leave the story half told. This song represents the upward turn after a painful chapter of my mental health and it feels important to include because while there are brutal lows, there are also wondrous highs. They’re all important and all part of the journey.” (x) I released the song in August, hoping that people would understand that the title was metaphorical, rather than literal. It didn’t do quite as well as the others had but given everything, I wasn’t surprised. It may have done better in a world without the pandemic but then we’ll never know, will we? Richard edited the video – with my feedback at various stages – and despite it not being what I’d originally imagined, I absolutely loved it. I’m really proud of it, especially given the circumstances and stress under which it was made.
And then, in October, I released the fifth and final single of the Honest EP, the title track, ‘Honest.’ It’s my favourite song on the EP and putting the last of our budget into promoting it, it did really, really well – the best of the EP. I’m so proud of it: the song means so much to me. It felt fitting to have the music video show some of the weird and wonderful ‘behind the scenes’ of this EP process…
As I said, the project isn’t over yet so I don’t want to write anything that sounds like too much of a conclusion but I’ve learned so much from it, from this year. I’ve learned a lot, dealt with enough stress that it’s probably taken years off my life, and never been so proud of anything I’ve done. I can’t wait to share the rest in 2021…
This blog post spiralled into something much bigger than I thought it would. But then, given that ‘normal life’ sort of evaporated around us and everything was constantly changing, maybe it’s not that surprising. I guess, there were a lot of things I felt I couldn’t leave to assumption so I included them just to be sure. Hopefully it’s made sense and got you thinking (or not thinking) about your experience of this year. It’s weird, isn’t it: we’ve all gone through this massive, world-encompassing event together and yet our years will look quite different. It reminds me of a quote I saw on social media (that I will have to paraphrase, unable as I am now to find it): “We’re all on the same sea but we’re all in different boats.” So, yes, we all experienced a global pandemic but our personal situations created a spectrum of experiences, with either end looking nothing alike. But I think we can all say that we’ll always remember this year. I know I will.
Although I spent a lot of the year feeling very negative, feeling depressed or anxious or frustrated or angry, I’m actually finishing the year feeling overwhelmed by gratitude. Yes, I’m anxious about being in Tier 4 and the rising COVID numbers – I think it would be ignorant not to be – but I’m just so grateful for all the positive moments and experiences that I’ve had this year. And, of course, the people in my life. I could not have gotten through this year without them.
“I don’t even know how to fully sum up this last year. If I thought 2019 was difficult, 2020 was on a whole new level of emotional chaos. I’ve been in survival mode for most of it, just trying to wade through waters that kept rising and rising, and every time I thought I’d found my balance, another strong wave appeared to knock me down. It’s easily been the hardest year of my life and one I know I won’t ever forget. But as painful and terrifying and exhausting as this year has been, there have been some amazing moments too: pre-pandemic gigs, releasing my EP, the contact with my friends and family, time with my cats, the awesome music, movies, and TV shows I’ve discovered this year, the chances to swim… So despite all the negative emotions I’ve experienced this year (and continue to experience), I’m overwhelmed with gratitude for the good in my life. // There’s a blog post with all my ramblings via the link in my bio 💜” (x)
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Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.