Posted on January 1, 2022
In hindsight, I don’t really know what I was thinking, setting goals when I had no idea what the year was going to look like. I’m not really surprised that I haven’t done as well as I would’ve liked, had the year been a normal year. But it wasn’t a normal year and I try to remember that when I feel myself getting stressed.
FIND A RHYTHM IN THERAPY AGAIN – This has been a tricky one. For various reasons, my therapy was fairly erratic for the first half of the year and then I wasn’t going at all until just a few weeks ago. A lot has happened and a lot has changed and going back is hard; it feels like I’m learning how to do therapy all over again. But we’ve worked through tough periods before. There’s no reason why we can’t figure out this one too.
PROGRESS WITH MY INVISIBLE BRACES – Okay, I officially failed at this. I’ve actually slipped backwards, going back to an earlier mold. It was just that, with everything going on, sleeping was the one time where I didn’t feel some sort of sensory overwhelm and I was so reluctant to lose that one safe space. I have worn it a little but not enough so I need to figure out a more manageable way to wear it.
WORK ON MY CORE – This has been a tricky one. Since the lockdown ended, I’ve been swimming as much as I can (and feel able to depending on various things: mental health, COVID numbers, etc) and I do feel like it’s helped, although it doesn’t feel like the pain mirrors how much or how little swimming I’m doing. Eleven months after the Hydrotherapy referral, I got a Physiotherapy appointment which resulted in them referring me to Hydrotherapy and a month or so later, I finally got a Hydrotherapy session. I’ve been doing the exercises by myself and I have a follow up appointment in the new year to make sure everything’s happening as it should. It’s too soon to know what effect it’s having but hopefully it’ll help with some of the problems caused by my EDS.
COMPLETE MY MAJOR REPERTOIRE PROJECT – I did it! It was hard work and utterly exhausting and, by the end, I was working twelve (or more) hours a day but I absolutely loved it. I loved being totally absorbed by one project and just writing as many songs for it as possible. I did struggle to balance what I wanted to do with the project with what I needed to do for the grade (although it’s true that trying to meet that criteria did result in it being a better project) but I had a fantastic supervisor, who was passionate and knowledgeable about a lot of the same things as me and who was also neurodivergent, which I think made a big difference when it came to tackling problems and her general support; my project was better because of her help. The day of my final presentation was a bit anti-climactic after everything and suddenly it was all over. But I’m so proud of the work I did, the many songs I wrote, and the mark I achieved, my highest out of every module. I’m so relieved, so happy, so proud, and so grateful to everyone who helped me get there. It was the best part of this year, easily.
FINISH MY MASTERS DEGREE – I still kind of can’t believe that I did this, given everything over the last couple of years. It’s so weird to look back at the beginning of the Masters in late 2019, knowing what I do now. But I did it: I completed my Masters Degree in Songwriting. During a global pandemic no less. But despite that, it was still an amazing experience; I met a lot of incredible people, I did a lot of work that I’m so proud of, and I got so much out of it. I’m so proud of my final project in particular and it was amazing to get such a high grade, as well as the Outstanding Student Award at graduation; that meant so much to me after everything that went in to getting the degree. And while I am excited for what comes next, I’m also really, really sad that it’s over; that’s the end of my education at ICMP and I don’t want my time there to be officially over. I loved my BA but doing an MA was the best thing I’ve ever done. It was beyond difficult and there were times when I hated it but it was an amazing experience and I’m so proud of myself and the work I did.
MAKE SIGNIFICANT PROGRESS IN CATCHING UP WITH MY DIARY – Yeah, no, I did not manage this. I’m barely managing to keep up, let alone clean up the messy notes I’ve been keeping over the last two years. My diary writing is in a state of chaos right now. It takes up so much time and causes me so much anxiety but I can’t stop; my OCD won’t let me. So I’m just keeping on keeping on; I don’t know what else to do.
WORK ON NOT COMPARING MYSELF TO OTHERS, ESPECIALLY WHEN IT COMES TO MUSIC – I think it’s fair to say that this is probably something I’ll be working on for the rest of my life; it’s not something that will ever be done, complete. I’m not sure if I’d say I’ve made progress with this but I do think I’ve learned a lot about myself and my insecurities. Two big factors that affect those insecurities are my mental health and how much I’m writing. When my mental health is good and I’m doing a solid amount of writing, I feel more comfortable and confident in myself and what other people are doing doesn’t feel scary or upsetting; they feel inspiring and exciting. But when my mental health is bad – and thus, my ability to write disappears – everything feels just too much. So most of the year was great, apart from a few dips, but my mental health hasn’t been great over the last two months – or in other words, completely fucking awful – so that’s what I’ve been focussed on: trying to make that better.
FIND MY NEXT PROJECT – This goal kind of makes me laugh now. To think I wanted to find my next project and now I have more projects than I know what to do with. It’s kind of stressful, trying to manage so many things at once, but it’s also wonderful to have so many things that I’m excited about. They’re all in process right now and I don’t know how they’re going to turn out so I don’t want to say anything yet, but I definitely found my next project.
This year has been a hell of a year for many reasons and while there were many negative surprises, there were also positive ones; those just aren’t always visible in the review of goals set at the beginning of the year. I’m really proud of a lot of things from the last twelve months and, given everything that’s happened, I’m actually kind of impressed that I was able to complete any of these goals at all. So I’m trying to focus on that.
Category: about me, covid-19 pandemic, depression, emotions, heds, identity, mental health, music, ocd, therapy, treatment, university, writing Tagged: 2020, anxiety, comparing, comparing myself, comparison anxiety, depression, diary, diary writing, eds, final project, goals, heds, hydrotherapy, hypermobile ehlers danlos syndrome, hypermobility, independent artist, invisible braces, journal, journaling, masters degree, masters degree in songwriting, memory hoarding, mental health, mental illness, music, new years resolution, new years resolutions, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, physiotherapy, plans, reflection, self confidence, self esteem, songwriter, songwriting, therapy, university
Posted on October 10, 2021
‘MENTAL HEALTH IN AN UNEQUAL WORLD’
As I’m sure many of you know, today is World Mental Health Day and the theme, chosen by the Mental Health Foundation, is ‘mental health in an unequal world.’ WHO seems to be building it around the pandemic, rather than as a problem of its own, but from what I’ve seen in the newsletters and on the social medias of many mental health charities and organisations, most seem to be following the lead of the Mental Health Foundation.
According to the Mental Health Foundation’s website: “2020 highlighted inequalities due to race and ethnicity, sexual orientation and gender identity, and the lack of respect for human rights in many countries, including for people living with mental health conditions. Such inequalities have an impact on people’s mental health. This theme, chosen for 2021, will highlight that access to mental health services remains unequal, with between 75% to 95% of people with mental disorders in low and middle-income countries unable to access mental health services at all, and access in high income countries is not much better.” It goes on to say: “Many people with a mental illness do not receive the treatment that they are entitled to and deserve and together with their families and carers continue to experience stigma and discrimination… The stigma and discrimination experienced by people who experience mental ill health not only affects that person’s physical and mental health, stigma also affects their educational opportunities, current and future earning and job prospects, and also affects their families and loved ones.”
Statistics provided by Mind (x)
I have my own experience with the mental health system – which I do want to touch on – and have heard from many others about their experiences but I wanted to read into the research around these inequalities further, both to get a better factual understanding and to put my own experience in context (beyond an anecdotal one). The research is sporadic at best but here are some of the statistics I found…
ACCESS TO MENTAL HEALTH CARE
From these statistics, it’s clear that far too many people aren’t getting the support that they need.
INEQUALITIES IN ACCESS TO TREATMENT (x)
These statistics clearly show the disparities in the availability of treatment, more supporting evidence for the statement that the Mental Health Foundation is making with the theme for this World Mental Health Day.
This research all indicates that young people in particular are being let down by the health care system.
SECONDARY [LONG TERM] CARE
The statistics show not just that the need for mental health care is increasing but the need for long term mental health care is increasing but that it’s also very difficult to access.
HIDDEN WAITING LISTS (x)
“A study of 513 British adults diagnosed with a mental illness also reveals the damaging consequences that hidden waiting lists – the wait between referral and second appointments – have on the lives of patients living with severe or common mental illness.”
It’s clear that, beyond the difficulty of even getting into the mental health care system, once in it, the process of actually getting the support you need is much too slow – so slow in fact that it’s exacerbating the mental health problems that those waiting are seeking help for.
Now I want to look at my experience of getting support for my mental health…
Since then, I’ve developed near constant chronic pain throughout my body – something that’s obviously had a big impact on my mental health – but over a year later, I’m still waiting for the NHS physiotherapy and hydrotherapy referrals to go through. I have started Occupational Therapy and with the Pain Clinic (both through the NHS) but with the end of my Masters, I had to take a break because they were too painful and/or upsetting to manage alongside all the work. I’m starting back this week. It still bothers me that no one’s ever even tried to find out why the pain started though.
Almost six years after my ASD diagnosis, the Neurobehavioural Clinic called to offer me an appointment, to do what I had no idea. But at the end of the two part session, I’d been diagnosed with Hypermobile Ehlers-Danlos Syndrome and ADHD – aged twenty six – both conditions having gone unnoticed because no one had ever taken my associated problems (problems that have been there my whole life) seriously. They’re both conditions that often occur alongside ASD. The hEDS diagnosis would, in theory, push my physiotherapy and hydrotherapy referrals but, as I said, I haven’t heard anything and almost a year later, my ADHD is still untreated. My psychiatrist was happy to ‘move’ that condition to his care but the consultant I saw didn’t want that, which is especially frustrating because she’s so difficult to get in contact with.
And finally, I may be getting answers to another ongoing medical problem: severe dizziness, light-headedness, nausea, physical weakness, and breathlessness when I stand up for too long. We’ve been trying to get support around this for so long that I can’t even remember when it started. This too may well be related to my Autism and I can’t help thinking that it’s another thing that should’ve been discovered sooner.
All of these things have had a profound impact on my mental health and going through the agonising process of diagnosis again and again has left me wary, fearful, and angry at medical professionals. It’s deeply ingrained in me to be polite and respectful but it doesn’t take much to send me flying off the handle; I walk into each appointment feeling like a tightly coiled spring. I leave pretty much every appointment in tears at best, raging at worst. Because I’m so. freaking. tired. of feeling like this. Of feeling like no one believes me, of being made to feel like I don’t know what I’m talking about, of being made to feel like I don’t know what I’m feeling. I feel so worn down by the constant let downs. At this point, I think I’m only going back because I don’t know what else to do.
I have no doubt that social media will be filled with nice words and encouraging quotes today. But we need more than that. World Mental Health Day is about more than that. Or it should be. It should be about pushing for change and improvement. The Mental Health Foundation is absolutely right that the inequalities in the mental health care system need to be addressed but looking at these statistics, it’s also clear that the standard of care needs to be better. For everyone’s sake. After all, there’s very little difference between not getting any support and being on a list waiting years for support.
Category: about me, adhd, anxiety, autism, bpd, depression, diagnosis, emotions, heds, medication, mental health, ocd, research, therapy, treatment Tagged: accessibility, adhd, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, borderline personality disorder, bpd, camhs, cbt, chronic pain, dbt, depression, diagnosis, diagnostic process, eds, ehlers danlos syndrome, gad, generalized anxiety disorder, heds, hypermobile ehlers danlos syndrome, medical trauma, medication, mental health, mental health awareness, mental health care, mental health foundation, mental health in an unequal world, mental health in the media, mental health services, mental health stigma, mental health treatment, mental illness, mental illness awareness, mental illness stigma, neurodiversity, nhs, obsessive compulsive disorder, ocd, private health care, private mental health care, private psychiatric care, research, social anxiety, social media, statistics, stigma, therapy, wmhd, world mental health day, world mental health day 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.
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
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.