Posted on May 9, 2021
Trigger Warning: This post contains mentions of self harm, but it’s simply a statement that it happened and there are no descriptions, graphic or otherwise. If this could upset or trigger you, please don’t read any further. Please always put your mental health and emotional state first.
So we’ve reached the last semester of the Master’s, with the big, final project that we’ve ultimately been working towards throughout this whole course. It’s a big deal, exciting and scary because – obviously – I want to do well and create a project that I’m proud of. But I am worried about my health, mental and physical, getting in the way and making it a difficult to both work hard and enjoy the process. So I thought, with all of this in mind, I’d write down where my head’s at and how I’m doing – I guess, so that I have a record of how I’m feeling right now, at the very beginning of the project.
At the moment, my biggest difficulties seem to be chronic fatigue and pain that are a result of my recently diagnosed Hypermobile Ehlers-Danlos Syndrome. I’m tired and sleepy all the time; some days, I can barely keep my eyes open during the day. While the physical tiredness is likely due to the hEDS, at least in part, we suspect the sleepiness is due to my antidepressant, Phenelzine. I want to switch to something else as soon as I can but mid-Master’s is not exactly a great time, given how long it generally takes for antidepressants to take effect and my track record of reacting badly to all but Phenelzine (so far, at least). So I’m having to just put up with that, with the dwindling help of Red Bull.
The pain has been really bad, particularly in my legs, arms, and back. For months, I’ve been taking painkillers daily but I feel like, over the last few weeks or so, it’s started to get slightly better. I’ve been doing the Occupational Therapy exercises for my wrists and hands and I’ve been able to start swimming again (yay!), both of which do cause pain of their own but it’s a very different pain and actually wears off pretty quickly while the hEDS pain tends to just get worse and worse unless I take painkillers. I’m getting better at figuring out where my limits are and stopping before I overdo it – most of the time. It’s hard but I do feel like I’m seeing progress.
My depression has been okay recently, much less of a problem than it has been in the past (she says while still on the ‘end’ of one, but I’ll get to that in a minute). I had one awful episode at the beginning of April, which did result in self harming. And then I had another episode last week, which I’m still feeling even if I’m not drowning in it anymore (it was kind of forced to the back burner by the worst migraine I’ve ever had). Both episodes were triggered by really upsetting news; they didn’t come out of nowhere like they sometimes do.
My anxiety has been a lot to deal with, but then there have been a lot of things to be anxious about: keeping up during the semester, the assessment and doing well in the module, all things COVID related (I’ve developed this weird house-separation-anxiety-like-thing whenever I’m out of the house too long, which is horrible), all of my health stuff, preparing for the new module and final project, trying to balance everything in my life, and so on. It’s exhausting and has a knock on effect; the rest of my mental health issues are all affected by my anxiety.
The two areas that are most tightly linked with my anxiety, I think, are my Trichotillomania and my OCD. My Trich hasn’t been too bad of late – not great but not unmanageable. But my OCD has been much more of a struggle lately than it sometimes is. I wrote about it in general here (so if you need a refresher on what my OCD is like, this is probably a useful read) but with everything going on recently, it seems to have kicked up a gear. I just can’t seem to do everything and then write all of it down; there aren’t enough hours in the day, which just leads me to getting more and more behind with everything, which just makes it worse and worse. Again, it’s just exhausting. I feel suffocated by it but I don’t know what to do about it; it feels like the walls are closing in around me and there’s nothing I can do to stop them.
As for autistic meltdowns, I haven’t had many of late. I think that’s because, despite my anxiety, I’ve had a really good few months. As I said in my previous post, this last university module and all the writing that came part and parcel with it was really good for me and I felt really good in myself so, in general, things didn’t build up to the point of meltdown. There were a number of occasions where something took me by surprise (for example, an unexpectedly triggering advert – I hadn’t even known that it was something that would trigger me so that was unfortunate for everyone) and I had a meltdown but as things go, it’s been better than it has been.
I’m not entirely sure how my ADHD manifests yet, having only received the diagnosis recently. If only it were as simple as getting the diagnosis and everything making sense… So I still have work to do in that regard. But I’m fairly certain – as certain as I can be at this point – that my issues concentrating and the feeling of my brain working against me are part of this picture. For the moment though, I’m in the dark about all of this. I’m in an impossible position medication-wise (I’m going to write about this in more detail at some point – it’s just that I’m still processing it all) so I’m stuck and unsure how to manage these problems. It’s frustrating and tiring and I wish there was an easy answer. Or even an easier one than I’m currently faced with. But there doesn’t seem to be. So I’m not sure where to go from here.
And the newest problem – because I really needed more problems… – are these migraines that I’ve been having over the last month. In the past, I’d have a migraine every few months or so but recently they’ve been different. They’ve been completely debilitating, painful to the point that I’ve ended up in A&E and had to have an ambulance called to the house because they’ve been so bad. They’ve also gone on for days when previously I could sleep them off and they’d be gone in twenty four hours. I’ve yet to find pain relief that does a decent job and I find that very scary. Calling 111 and them sending an ambulance because I was in so much pain but so light sensitive that even a darkened room felt too bright is a big deal and I’m scared of what’s next, of how it could get worse. I don’t know what’s causing them and no one else seems to either.
And finally… I’ve been the most consistent with therapy I’ve been since the pandemic began, even if I still find it hard and less productive when doing it over Zoom. But it’s looking like we’ll be back to face-to-face soon, which is exciting if scary – as I said, I’m finding it quite stressful to be out of my house. But hopefully, therapy will go back to being as helpful as it was pre-COVID, when it was face-to-face all the time. I don’t know exactly why it doesn’t feel the same over Zoom – maybe I find it harder to connect and talk about the hard stuff when I’m not in the same room as my therapist – but it just doesn’t, so I’m looking forward to getting back to the room.
So that’s it, I guess. This is my mental health (and I suppose, physical health update) before I start the final module of my Master’s, The Major Repertoire Project. Everything feels very messy and complicated right now, which isn’t exactly reassuring. I want to do well in the module, of course, but I also want to really enjoy it and really get the best out of it. The module doesn’t officially start until tomorrow but I’ve already started working on my project. I’m so excited. I just hope I can manage it with all of this other stuff going on.
Category: about me, adhd, anxiety, autism, covid-19 pandemic, depression, diagnosis, heds, medication, meltdowns, mental health, music, ocd, self harm, therapy, treatment, trichotillomania, university Tagged: adhd, adhd diagnosis, anxiety, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, chronic fatigue, chronic pain, coronavirus, covid-19, depression, diagnosis, drowsiness, ehlers danlos syndrome, fatigue, generalised anxiety disorder, heds, hypermobile ehlers danlos syndrome, hypermobility, major repertoire project, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, meltdown, mental health, mental health update, migraine, obsessive compulsive disorder, occupational therapy, ocd, online therapy, pain relief, pandemic, pandemic 2020, pandemic anxiety, self harm, sleepiness, swimming, therapy, trichotillomania, trigger, trigger warning, tw, university
Posted on March 13, 2021
As of today, I have been self isolating for a whole year. 365 days. In that time, I’ve probably left the house no more than twenty times: for one morning of work (that had to be done out while the rest I’ve been able to do from home), for medical appointments, for swimming/hydrotherapy. And a haircut (when my Trichotillomania was particularly bad) during a period when it was considered safe to have one. But other than that, as a vulnerable person, I’ve stayed home. I worked out the numbers and that means I’ve spent 95% of the last year in my house. I look at that number and it kind of blows my mind. I’ve always been a homebody but this is so not the same thing.
So, to acknowledge the occasion, I thought I’d make a post about it. I thought about doing a list of good things and bad things, but given that the year has been dominated by the pandemic, that just felt wrong. Like, in general, it feels like the bad things carry so much more weight; a list like that just didn’t feel like an appropriate way to look at the last year. So, instead I thought I’d make a list of some of the things I’ve learned this year. There have been so many new experiences, new approaches to everyday tasks, new thoughts, new emotions, and so on. So I thought that might be a better way of looking at things. I doubt I’ll remember everything but I’ll give it a go.
As I said, I’m sure there are more things that I’ve learned during this time but I think that these are all of the big ones, the big, personal ones. I’m included in the group currently being vaccinated (although I’ve yet to hear anything) so maybe I will be heading out a little more often once that happens, if only to get some more exercise. But to be honest, given how this last year has affected my mental health, I don’t think I’m going to be exactly quick to adjust to the idea that things are somewhat safer (the government certainly seems to think so, what with their plan to come out of lockdown). As desperate as I am to see my friends and family again and get back to swimming again, I don’t think I’m going to feel safe again for a long time: as I said, I don’t cope well with change.
Category: about me, anxiety, autism, body image, covid-19 pandemic, diagnosis, emotions, life lessons, mental health, music, therapy, treatment, trichotillomania, university Tagged: adjustment, asd, autism, autism spectrum disorder, autistic, autistic adult, change, community, coronavirus, covid-19, covid-19 vaccine, diagnoses, diagnosis, essential workers, family, fear, friends, friendship, frontline workers, grateful, gratitude, hand sanitiser, health, helping, independent artist, learning, lessons, lessons learned, lockdown, mental health, mental health in lockdown, multiple diagnoses, online classes, online learning, online study, online therapy, online university, pandemic, pandemic 2020, planning, remote therapy, remote writing session, routine, self isolating, sensory, society, structure, swimming, therapy, uncertainty, unity, unsigned artist, vaccine
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.
Category: about me, anxiety, autism, book, bpd, chronic fatigue syndrome, covid-19 pandemic, depression, emotions, event, identity, mental health, music, ocd, therapy, treatment, university, video Tagged: 2020, asd, autism, autism spectrum disorder, autistic, book, books, comparing myself, comparison anxiety, coronavirus, covid-19, debut ep, ep, exercise, film, films, goals, habit, honest ep, hydrotherapy, hypermobility, hypermobility diagnosis, invisible braces, lauren alex hooper, laurenalexhooper, lockdown, lockdown 2.0, lockdown 2020, masters degree, masters degree in songwriting, masters degree year one, masters degree year two, masters part time, mental health, mental illness, movie, movies, music, music industry, new year, new years resolution, new years resolutions, online therapy, overstimulation, pandemic, pandemic 2020, pandemic anxiety, part time masters student, sensory overload, singer, singersongwriter, singersongwriter life, songwriter, spotify wrapped, swimming, therapy, tier 4, tier four, tv show, tv shows
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 all five songs are now available on all major music platforms. However, there’s still more content to come…