Finding HopeMental Health Update (May 2021)
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.
One Year of Self Isolating
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.
- ADJUSTMENT TAKES TIME – Going from normal life, the same lives we’d been living for considerable periods of time that rarely changed dramatically, to suddenly spending all of our time inside, missing our friends and family, and dealing with all of the fears and unknowns around COVID-19 was a big deal. A really big deal. And as someone who really struggles with change and uncertainty, this was a nightmare for me. I was barely functional for the first few weeks, if not months, because I was so overwhelmed. Eventually I managed to do the bare minimum but I continued to really struggle with anxiety. And things that had once been normal suddenly felt hard: I couldn’t concentrate enough to read anything; my songwriting felt blocked by my fear around the pandemic; cowriting sessions had to take place over Zoom, which felt awkward and made being creative more difficult; doing therapy via Zoom felt weird and the conversations felt limited and stuck because COVID was obviously the biggest thing going on but I really didn’t want to talk about it because it felt so upsetting. All of these things have gotten better over time (the reading is still a struggle though). At the time, the stagnation was unbearable but slowly I adjusted to each new version of normal and each time, I adjusted more quickly and with less difficulty. It’s all had a cumulative impact on my mental health and it’s gonna take a lot of work to get back to where I was pre-pandemic but I’m coping better than I was earlier on in the pandemic.
- I HATE HAND SANITISER – I really hate it. I will 100% use it without complaint because I know how important it is in the effort to keep us all safe but oh my god, it feels (and smells) disgusting. As someone so sensitive to sensory stuff, I have really struggled with it but if it’s helpful, if it’s the right thing to do, I will willingly put up with it. I get the impression that it’s going to be a part of our lives for the foreseeable future so I’m going to make it a priority to find one that I don’t hate, just to make the experience less gross.
- I NEED STRUCTURE BUT I CAN’T DEAL WITH EXACTLY THE SAME THING EVERY DAY – Knowing what is going to happen in my day is a really important part of managing my ASD and my mental health; having structure and certainty helps me to avoid anxiety and be more productive. So planning and a certain amount of routine are massively helpful but having such a strict routine that I do exactly the same thing at the same time everyday isn’t helpful. It just makes me feel trapped and anxious and suffocated.
- PRE-PANDEMIC, I WAS SO LUCKY TO SEE MY FRIENDS AND FAMILY AS MUCH AS I DID (AND I HOPE THAT THIS WILL CONTINUE ONCE AGAIN WHEN IT’S SAFE) – There’s not much to expand on here. I feel so lucky to be so close to my family, to have always seen them so often before the pandemic. Having to go without seeing so many of them (in person) for so long has been really, really hard. I also feel really lucky because I know that, as soon as it’s safe to do so, this will continue. I can’t wait.
- I’VE LEARNED WHAT I REALLY NEED IN A FRIENDSHIP – This isn’t related to the pandemic directly (so many of us have been struggling socially so it would be unfair to judge someone on whether they’re a good or bad friend based on this period of time) but it’s something I’d been thinking about before the pandemic and I continued to reflect on it during the lockdowns. I thought about the friendships that have lasted and the friendships that haven’t and had a bit of a revelation about the few fundamental things I need to be getting out of a friendship in order for them to be positive and fulfilling and, in addition, what makes a friendship draining and detrimental. That’s where it turns from a friendship into something unhealthy. But I think I’ll expand on all of this in another post.
- I’M REALLY LUCKY TO HAVE THE FRIENDS I DO – My friends have been my lifeline to reality over the last year, a year of feeling like I’m trapped in a box (a feeling I’m sure, many, many people can relate to). I haven’t been as good at staying in contact with some as with others but it’s because of them that I’m pretty sure that I haven’t completely fallen apart. I feel really lucky to have a handful of friends from each ‘era’ of my life so far (school, college, university, and now post grad) that I’ve stayed close to but I feel like we’ve become even closer this year, even though we haven’t been spending time actually together. I’m really grateful to have these incredible people in my life and I just hope they know how much they mean to me.
- SWIMMING MAKES ME FEEL REALLY GOOD, IN MYSELF AND ABOUT MYSELF – Swimming is the only form of exercise that I can do without pain but due to the constantly varying pandemic restrictions around gyms and pools, I haven’t had many chances to swim. But the times I have managed to swim have felt fantastic. It makes me feel almost giddy with joy and it also makes me feel strong and in control of my body, all things that I rarely ever feel. I can’t wait to swim as much as possible (and is sensible) as soon as it’s safe.
- IT CAN BE SO EMPOWERING TO BE AN INDEPENDENT ARTIST/MUSICIAN – That’s not to say that it’s not hard, or even impossible sometimes, that it’s not utterly terrifying. Because it is. A lot of the time. For me, at least. I can’t speak for anyone else. It is very scary to be the one ultimately in charge of your artistic career because every decision and every consequence comes back to you. And oh my god, it’s incredibly expensive. But putting all of that (and more) aside for a minute, it has felt very empowering over the last year to be that person in charge: no one knows what’s happening, no one knows what’s going to be happening in three months time, so you just have to go with your gut and hope it’s the right choice. If it isn’t, it isn’t and that’s disappointing but being a new, independent artist in a pandemic is hard and possibly the worst time to be starting out so I think we all, at the very least, deserve some credit for even trying. And then there are the choices that do work out and they really make you stop and think because that came down to you or you and the small team you work with and it actually worked. It was actually successful. And that’s pretty mind blowing, especially so in these completely unknown times.
- ONLINE LEARNING IS HARD, BUT THERE HAVE BEEN SOME BENEFITS – I can’t talk about online learning without recognising that I’m in a very fortunate position compared to many other students: I was and still am living at home, my university and my course are relatively small, my course can be completed remotely (although, of course, I’d much rather be doing it in person) even if it is much more difficult, the available technology has made it possible to continue creating and creating collaboratively, I have a good mental health (and now physical health) support system and so on. I’m very lucky. It’s been painful and difficult at times but less so than it could’ve been, not that I would’ve said so during the painful and difficult times, of course. But I feel closer to my coursemates than I’d have thought possible, given the fact that we’re only ever together via a screen. But we’re all going through this big, unknown, scary, frustrating, upsetting experience together and I think that’s created a unique bond. I can’t say whether or not we’ll all still be in touch in, say, ten years time – I hope so – but if we aren’t, I know I’m going to look back and think, “Those were some of the people that got me through the terrifying experience of the COVID-19 pandemic and for that, they will always be special to me.”
- ALL OF MY DIAGNOSES ARE CONNECTED – Again, this isn’t pandemic related but I don’t know if it would’ve happened (or, at least, happened now) if not for the pandemic. After years of researching, endless doctors appointments, SO MANY referrals, and talking to various different consultants, we finally struck gold and found a superhero in the form of a hypermobility specialist. She was able to make things happen, move various processes along, and just get people to listen to me. Since meeting her, I’ve had various tests and appointments and a couple of diagnoses that seem to have finally pulled all of my apparently unrelated problems together, which is both overwhelming and… good. I kind of haven’t processed beyond that. Again, I want to go into this in more detail in another post, when I’ve processed it more deeply and where I can go into much more detail. But it’s a big deal. A really big deal.
- AS PART OF A SOCIETY, WE ARE PART OF SOMETHING SO MUCH BIGGER – I obviously knew this already but that knowledge has felt different since the pandemic began, when it became clear that we were going to have to act as a collective to reduce the effect of the virus and return to something that at least vaguely resembled normal. And in some ways, that’s been a very powerful and emotional experience with people stepping up and helping each other simply because they could and because it was the right thing to do it. Although, having said that, it’s also been hugely frustrating to watch people not do their part when so many people are making such sacrifices. But on the whole, it’s been an honour to be a part of a group doing all they can to end the pandemic. What I personally can do, of course, is not on the same level as the frontline and essential workers – my god, not even close – but if the most I can do is obsessively follow the safety instructions and stay at home unless absolutely necessary, then that’s what I’ll do and I will do it without hesitation. I have such incredible respect for these people who have helped so many, who have made such sacrifices, and who have gone through so much during the pandemic that I will do (or not do) whatever is asked of me to make their lives and their jobs even the slightest bit more manageable. I will never forget what they’ve done for us during this time, not for as long as I live.
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.
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 