Posted on September 12, 2021
And that’s that. I’ve finished the final module of my Masters and therefore the Masters itself. I don’t know what my grade is for the module or for the whole course yet but frankly, I’ve got a lot to process before I can even really think about the grades and graduation.
Looking back at a similar post before the module started, I was excited about the project but nervous about my health, mental and physical, and whether it would prevent me from doing everything I needed to do, from being able to enjoy the process. And those were valid concerns so I thought, having written a post about how I was feeling before the module started, I’d write another now that it’s ended – like bookends.
A lot has happened since the beginning of May.
Over the last four months, I’ve spent almost every day working on my final project, researching, writing songs, and working on the production of an album. It’s been incredibly intense and now that it’s all done, I’m utterly exhausted, both mind and body. And while, for the most part, I loved it, it’s also a relief to be free of some of the anxiety around it (I’m still struggling with my anxiety around the grade). Having said that, I feel strangely lost and untethered now that I don’t have this big thing to focus on. I know that I need a break but I am looking forward to the next project, whatever that may be. I’m always happier when I’m doing things.
My mental health was pretty good for most of the module, surprisingly so. By my standards at least. I think that the constant creating and the creating of stuff I’m proud of really helped. I had one particularly bad episode of depression, plus a handful of smaller ones, and my anxiety was pretty constant but that’s normal for me. It got very bad in the last month, which was hard to manage – trying not to let it destabilise me was a bit of a battle in itself. It hasn’t quite faded yet. For various reasons, I didn’t have any access to my therapist, which was an unforeseen difficulty and that made things a lot harder than I’d expected them to be.
I also really struggled with my concentration. I’m still not getting any support for my ADHD (something that I hope will change soon but I’m still so frustrated that I couldn’t get any help with it during my Masters) so staying focussed on my project, on my research, took all of my energy. It was exhausting. I felt like my concentration was so, so fragile that a single moment of distraction would break it and then it would be impossible or would take days or even weeks to get back. So I couldn’t stop. Not for anything. That was very stressful and resulted in many, many long days. Sometimes I’d work all day without moving (not healthy, I know) and end up going to bed very late. And then, of course, I couldn’t sleep because my thoughts were racing. So it did a number on my sleep schedule too; I’m surprised I’m not nocturnal at this point.
That, plus the general fatigue I deal with day to day, meant I was tired all of the time. I’ve drunk an obscene amount of Red Bull (my antidepressants make me really drowsy, just to make things even more difficult, although I may be changing medications soon, which hopefully won’t have the same side effects) – I am beyond sick of the taste of it. But it got me through and I’m grateful for that. I will however be grateful to never drink it again (hopefully). And I’m really looking forward to getting both some proper sleep and some proper rest now that my work is done.
I also mentioned back in June that I’d been having migraines that seemed to be being caused by an abscess in one of my teeth. Since then, I’ve been on antibiotics twice, continued to have migraines, and am still waiting to have the tooth removed, a decision that was made at the appointment in June. Given how much disruption it was causing though, I did get extenuating circumstances which allowed me some extra time (although it wasn’t really extra since it was making up for time lost to a medical problem) to cope with those problems. It’s not bothering me presently which is a relief but I’m more than ready for them to take the tooth out, just so that they’re not even problems I have to think about.
While I managed to keep swimming twice a week – a routine I’ve been trying to maintain to create a solid foundation for my crappy joints – I was in almost constant pain throughout the module. At times, my right knee was so painful that I couldn’t walk on it and my back has been consistently painful; my Mum, who used to be a massage therapist, said it felt like trying to massage rocks and now that it’s all over and I’m trying to relax, the muscles feel like their made of concrete. Which is about as pleasant as it sounds. I’ve also had great trouble with my hands and wrists what with all the typing I’ve been doing. So, all in all, I’ve been a bit of a mess. I haven’t had any support for this – the hEDS – either; I’ve been waiting for physiotherapy and hydrotherapy since December 2020 officially and May 2020 unofficially. I’ve just had to try and get by on various painkillers, none of which have been all that effective.
Despite working practically non-stop, I got everything for my project done just in time for my final presentation. My assessors were positive, which I’m trying to hold on to in the wake of my anxiety around the final grade. I’ve been really trying not to attach my self worth to my grades (something I’ve always really struggled with), or at least, lessen the power my grades have over me but I can’t help the fact that I really want to do well. I’ve worked so hard – with so many obstacles – and the idea that that still wasn’t enough to get a Distinction would be upsetting. I’d get over it but it would still be upsetting. I never want someone thinking, “Oh, she mustn’t have worked hard enough.” Or worse: I never want to think, “Oh, I would’ve gotten a distinction if I wasn’t autistic or had ADHD or whatever” thoughts left over from my late diagnoses and the resulting difficulty I have in setting standards and goals for myself (more on that in another post). This anxiety isn’t helped by the fact that I keep thinking of things that I should’ve included in my presentation. My brain clearly hasn’t quite processed that the module is over.
And then, just when I thought I could relax, the world tipped under my feet. The next morning, my Mum told me that my Granny had died a few days earlier. She was ninety-three. Having barely started to process the end of my two year Masters and intense final project, this news was just too much for my brain. A few days on, I feel like I’m bouncing pretty erratically between two states, the first being this weird bubble where nothing can touch me and the second being, ‘if I stop thinking or talking or moving for even a second, I’m going to completely fall apart.’ It’s surreal and exhausting and sad. I’d like to write a piece about her at some point because she was such an incredible woman but I can’t really write more than this right now but it felt really important to at least acknowledge what’s happened because it’s so big and so important.
I don’t think there’s anything else to say right now. I’ve barely been able to wrap my head around this last week: my final presentation, the ending of the Masters, Granny, and everything that’s ahead given all of these things. It’s a lot to take in; I’m exhausted. I’m just taking it day by day.
Category: adhd, anxiety, autism, covid-19 pandemic, death, depression, emotions, family, heds, medication, mental health, music, research, sleep, therapy, university, writing Tagged: actuallyadhd, actuallyautistic, adhd, adhd inattentive type, adhd support, album, antibiotics, antidepressants, anxiety, anxiety disorder, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, autistic student, break, concentration, death, depressed, depression, drowsiness, drowsy, eds, ehlers danlos syndrome, exhaustion, extenuating circumstances, fatigue, final project, focus, generalised anxiety disorder, grades, grandmother, grandparent, granny, grief, heds, hypermobile ehlers danlos syndrome, hypermobility, identity, inattentive type, late diagnosis, loss, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, mental health, mental health break, mental health update, mental illness, migraine, migraines, new album, new music, part time masters student, processing, recovery time, red bull, rest, self worth, side effects, singer, singersongwriter, singersongwriter life, sleep, sleepiness, sleepy, songwriter, songwriting, therapist, therapy, tired, tooth extraction, tooth pain, writing
Posted on July 18, 2020
On Monday, for the first time in over a hundred days, I left my house.
I was already self isolating when the UK lockdown went into effect. My university classes had moved online, I have friends and family that I could put at risk if I caught the virus, and it generally seemed like the safest, most socially responsible thing to do. Then the lockdown was officially put in place and it was me and my Mum in the house together. Struggling with Chronic Fatigue Syndrome, I don’t go out a whole lot because I physically can’t manage it but I had previously had university classes, seeing friends and family, and swimming at the gym (the only exercise that doesn’t cause me physical pain – probably because it’s non weight-bearing), all of which were suddenly gone. My Mum went out only to food shop and pick up medication prescriptions as necessary.
I’ve only been out once since then and that was to rescue my kitten who got stuck up a tree in a neighbour’s garden – we think she’d been up there for more than twelve hours. And when we did go to get her, all involved socially distanced and wore masks. It was stressful in the face of the virus but my kitten would not come down by herself and we were all getting really worried about her.
Ever since then, I’ve stayed in the house. My mental health has been a monumental struggle during this time, especially my anxiety – to the point that something as simple as laughing from outside or looking through the window at the street can cause severe anxiety and autistic meltdowns. And the longer this goes on, the worse it’s getting. I’m in contact with my psychiatrist, taking my medication, and having online sessions with my therapist but I don’t feel like it’s making much difference to my anxiety.
The easing of lockdown only increased my anxiety. With the scientists and Public Health England still warning of the dangers of Covid, it seemed (and still seems) incredibly irresponsible of the government to be making such changes. When it was announced that hairdressers would be opening on the 4th July, my anxiety sky-rocketed. Ever since the pandemic began moving into Europe, my Trichotillomania has escalated dramatically. It’s been a problem for years but with the recent extreme levels of stress, I’m now pulling my hair out more than I ever have. It’s not only causing pain in my scalp and damage to my hair, it’s also causing terrible pain in the fingers, hand, arm, and shoulder on the side I pull from, as well as tingling and numbness that often doesn’t pass for most of the day. So while I did, of course, want a hair cut (as I think everyone did), I was also desperate for advice and help with this problem. Plus, I go to an independent hairdresser and wanted to support them.
But despite all of that, I just as desperately didn’t want to go. Even with the all the strict safety measures they’d informed their clients of, I still felt overwhelmingly unsafe going out, especially into town. To make it feel more possible, we spoke to them and they arranged my appointment to be as stress free as they could possibly make it: we cancelled the colour to reduce my time there (it felt unnecessary as it was something I could do at home – I’d booked it way back when when it had looked like it would be (or feel) safer, they scheduled my appointment first thing on a Monday morning so the environment would be as clean and safe as possible, and they were happy to have my Mum come with me in case my anxiety got too bad. When we made those arrangements, it felt as good as I thought it was ever going to and we moved on, the appointment still a few weeks away.
But as it got closer, my anxiety grew and grew until I was having panic attacks over it. I didn’t want to go. I really, really didn’t want to go. It felt so unsafe to be going out, even with a mask, gloves, hand sanitiser, and safety measures in place. I didn’t want to go. The anxiety was unbearable and I had multiple awful panic attacks.
In the end, my anxiety just wiped me of all my energy and on the morning of the appointment, I just didn’t know what to do. I had nothing left. So Mum took over, got me up, and took me to the appointment. Even being outside felt terrifying: I felt so unsafe and exposed and vulnerable. We got there and the hairdressers was almost empty, as planned, and my hairdresser was as lovely as always. I’ve been camouflaging my Autism and my anxiety for so long – I’ve spent my life building a mask to help me manage in difficult situations, something that I want to write about more in the future – that most people see the ‘usual’ me but in reality, I was so anxious that I felt like I couldn’t breathe properly (and that had nothing to do with the facemask). I almost destroyed the fidget toy I’d brought with me and the whole experience was just exhausting. It felt like it only added to the trauma of the pandemic and lockdown.
(I do want to make it absolutely clear that that has nothing to do with them as people or a business. It was all about going out and feeling so unsafe outside my house.)
My hairdresser is awesome and so lovely and we had a good conversation about the condition of my hair and the textures that trigger my pulling. We talked about what might improve the condition of my hair and therefore lessen the textures that trigger me, which products might be helpful. So we’ll see how that goes. And simply cutting off the dry ends of my hair will hopefully help with the pulling too.
We were there less than an hour but I was completely exhausted. I was barely functional all day and ended up falling asleep on the sofa at about 10pm, hours earlier than I usually get to sleep at the moment. And it’s taken days to regain enough energy to concentrate and actually do things again. Even now I’m not sure whether I made the right choice or the safest choice but it’s done and I can’t go back and change it. Several people have said to me that going out would make going out again easier but if anything, it’s made it feel even scarier so, for the moment at least, I’m not going anywhere.
The next challenge, I guess, is when gyms reopen. As swimming is the only non-painful exercise I can do, my exercise has been severely limited during lockdown and on a personal level, I’m desperate to get back to it. I love it, I miss it, and I miss how it makes me feel, physically and mentally. But I just can’t imagine how on earth it can be safe. So there’s a lot of investigating to do, a lot of thinking and weighing the pros and cons to do. I’ve never been so jealous of people having their own private pools.
Category: covid-19 pandemic, emotions, mental health, trichotillomania Tagged: actuallyautistic, anti anxiety medication, anxiety, anxiety disorder, asd, autism, autism spectrum disorder, autistic, autistic meltdown, autistic meltdowns, cat, cfs, chronic fatigue, chronic fatigue syndrome, coronavirus, covid-19, easing lockdown, easing of lockdown, energy, exercise, fatigue, fear, gym, hair, hair pulling, haircut, hairdressers, independent business, kitten, lockdown, mask, masks, me, medication, meltdown, meltdowns, mental illness, pain, pandemic, panic attack, panic attacks, phases of lockdown, psychiatrist, risk, salon, self isolating, shielding, social distancing, swimming, therapist, therapy, trich, trigger, trigger warning, triggers
Posted on December 15, 2019
If you guys follow me on social media, you’ll know that this week, I posted about going back to therapy and being rediagnosed with OCD…
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I’m back at therapy! And this is one of my therapist’s dogs who thinks she’s small enough to sit in my lap. Anyway. I never deliberately stopped going but our schedules have been very difficult to align for a while, particularly with me starting my Masters, and so it’s been a good several months since I’ve had a session. I almost feel like I’ve forgotten how to do it, do therapy. But I’m back and hopefully it will help with my anxiety, which has been severe for a while now. And on that note, I’ve been rediagnosed with OCD! I’m gonna write more about this in a blog post soon but this is really good for me. I have a plan of action. It’s gonna be a long road and I am anxious about it but I feel better knowing what the treatment options are, some of which I’m already doing. So despite feeling very unwell, it’s been a positive week. It’s progress.
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So, that basically explains what’s been going on with therapy (I’ll update you on all of that as I continue with therapy) but I wanted to talk a bit more about the OCD diagnosis because that’s kind of a big deal.
Back in 2016, I was diagnosed with depression, anxiety, social anxiety, OCD, and BPD. And then I was diagnosed with ASD. But in the last year, my psychiatrist reorganised my diagnoses and decided that the symptoms he’d originally seen as OCD fell under some of the other diagnoses, particularly the ASD. But recently, it’s become very clear that it really is OCD.
If you remember this post, I talked about having a massive meltdown, which triggered daily, multiple meltdowns. It was awful and one of the most difficult periods of my life, mental health wise and otherwise: dealing with that and trying to manage the beginning of a Masters. It was pretty hellish. I’m not sure when it stopped but it slowly faded and I’m now only having a meltdown every couple of weeks or so – still a bit more than usual but much more manageable.
But that really triggered something in my obsessive diary writing. My diary writing has been pretty compulsive for years: I NEED to write everything down. It’s like, if I don’t record everything that happens to me, I’ll forget who I am. It’s a constant battle, but it suddenly went from manageable to completely overwhelming. It takes up all my time or it would if I didn’t have all this research to do for my Masters. So these two things are constantly pushing up against each other, which causes me a lot of anxiety. But the diary writing usually wins, which only causes me more anxiety, anxiety that I’m going to do badly in my Masters. And even though I know all of this, I still can’t stop writing. And because there’s more life than there is time to write, I’m just getting more and more behind. More anxiety. So I’m just a big ball of anxiety. It’s like a snowball rolling down a hill, getting bigger and bigger and going faster and faster.
It took forever to get an appointment with my psychiatrist (so the anxiety has gone on a lot longer than was necessary or fair, in my opinion), but eventually I got an appointment. And of course, the time was then changed last minute, the sudden change of plan sent me spiralling into a meltdown. So it took a long time but I finally saw him and we talked about all of this in great detail and he decided to re-diagnose me with OCD. I’m so relieved because now it has edges; it’s not some vague, amorphous cloud of stress hanging over me. A diagnosis gives me something to work with.
We talked about the treatment options, medication and therapy. Medication wise, I’m already taking the things he would recommend so that’s that avenue covered. I don’t know much about the therapy route yet. As far as I know, I’ll have to reduce the writing bit by bit, which – in itself – is going to create more anxiety. Hurray. Not. It’s the whole ‘it’s gotta get worse before it gets better.’ But now I’m back in therapy and I have an amazing therapist so although I’m terrified of even more anxiety, I know I’ll have thoughtful, compassionate guidance. I don’t know when we’ll start because, as my psychiatrist pointed out, right before a set of assessments isn’t necessarily the most productive or helpful time to do this sort of stuff. But even though I’m scared, I need to start working on this soon or every semester is going to be like this one: a daily battle of OCD versus real life. And I really, really don’t want that.
Category: animals, diagnosis, medication, mental health, therapy, treatment, university, writing Tagged: anxiety, asd, autism, autism spectrum disorder, dbt, dialectical behaviour therapy, masters, masters degree, masters degree in songwriting, meltdown, meltdowns, obsessive compulsive disorder, ocd, psychiatrist, therapist
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.