Finding HopeMass Observation Day 2023 (A Day in My Life)
Posted on May 13, 2023
So yesterday was the 12th of May, also known in the UK as Mass Observation Day! Every year, the Mass Observation Archive asks people to keep a diary for the day in order to record the everyday lives of the UK population. I’ve been keeping diaries for most of my life and I think that the idea of pulling together all of these accounts in order to get a picture of an ordinary day in the life, whatever that might look like, for a big group of people is really, really cool so I always try to participate. Here is my contribution for this year.
Some important things to know before reading: I’m neurodivergent, autistic and ADHD, and struggle with multiple mental health issues (Depression, Generalised Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Personality Disorder) and physical health problems (Hypermobile Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome). Having spent eighteen months in the worst depressive episode of my life, I’m recently back on medication and trying to get my feet under me again, working hard at both therapy and hydrotherapy. I’ve also recently released my latest single as a singersongwriter, ‘House on Fire,’ and am working towards several other projects.
I slept through two alarms, completely exhausted. I’d had a really late night in London seeing Ingrid Andress in concert (supported by Nick Wilson), which was absolutely amazing but between the energy expended and how late I got home, I was beyond tired.
When I finally managed to force myself awake around eleven, I lay in bed for a little while: I did a quick check in with social media (I’m trying really hard to find a healthy balance around time on my phone), did some Duolingo practice, and read a little bit of my book (both of these things are habits that I’m trying to practice daily). Then I got up and got ready for the rest of the day.
At one, I had a Zoom date with one of my best friends. We had a good catch up about what’s being going on for each of us, with many a tangent on kind of bizarre topics like alternate universes or the different sounds that insects make. And then we continued watching the TV series we’ve been watching together for the last few months, a series we both enjoyed when we were younger; we love it but we also love making fun of it so we always have a blast. We managed to watch two episodes and had a great time before I had to go. I didn’t have long before my therapy appointment so I got my bag ready and then fiddled around on my guitar until I had to leave (I haven’t been able to play for long stretches of time recently since I hurt a couple of my fingers so I’m trying to build it up again).
I was so tired and really sleepy (one of the ongoing symptoms of my health struggles and quite likely a side effect of my medication), plus my chronic pain was pretty bad (my shoulder and knee have been particularly painful for several days now), but I tried my best to push through and engage the best I could with therapy. In some ways, it was a fairly chilled session (as they go): my therapist had asked me to send her the poetry I’ve been working on over the last month or so, which I did. But it was also hard and I felt really vulnerable because most of the poems are so honest and so revealing. There were some that I said, before we even started, that I couldn’t talk about; just writing about those topics and sharing them (my anxiety about them was so high that I was really tempted to leave them out) was a big step forward. Obviously I want my therapist to know about these struggles but talking about them is beyond difficult (just the thought of it makes me want to scream or run or both); this is the best I can do for now. So we went through the poems, talking about what inspired them and my feelings about those people or experiences or struggles, which inevitably turned into bigger discussions. That meant that we didn’t get through all of them but we did cover some important stuff. I’ve been back at therapy for a while now – several months – but my new therapist is still getting to know me and I’m still getting comfortable with her; there are many things that I can talk about but there are still things that I can’t, things that I’ve never been able to. It’s a process, as I often have to remind myself.
Back home, I talked with my Mum about some of the stuff that had come up in the session but I’m always completely exhausted after therapy – I have been known to fall asleep on the sofa afterwards, hence the late afternoon appointments – so I checked in with the cats, put on The Good Place (my current rewatch), and lay on the sofa for a bit. I called one of my parents for a catch up, had some dinner, and then spent the rest of the evening working on some different things for this blog.
What should’ve been a fairly pleasant evening was complicated a bit by how bad my hair pulling has gotten. That restless, anxious energy that drives me to keep doing it is so hard to resist, especially when I’m tired, and the longer I do it, the more it hurts: my scalp, my neck, my shoulder, my elbow, my hand. But I can’t stop. There have been periods of time where different coping mechanisms have at least reduced the amount of hair pulling but I don’t have one that’s working right now. It’s frustrating and it’s exhausting and painful but I just can’t stop, regardless of how much I want to. I did look into Hypnotherapy briefly a long time ago but didn’t get very far with that endeavour, maybe because it always felt like there were bigger things going on, but maybe I’ll try again because it’s been ten years and it would be really nice not to do this anymore.
Given how tired I was, I tried to go to bed earlier – I’ve been going to bed far too late – and while I did go to bed a bit earlier, I still ended up staying up too late, catching up with my diary. I had multiple cats curled up with me, which was very sweet, so it could’ve been worse and, after all of my problems with sleep, I did at least go to sleep quickly and easily; I’m always grateful for that now, having struggled so much over the last couple of years.
So it wasn’t the most fascinating day of my life but it’s pretty accurate to my life right now and I guess that’s the point of the exercise. It’s a normal day in my life and this is what normal looks like right now, for the most part.
If you keep a diary or want to note down some thoughts about what your 12th of May looked like, the website is here, where you can learn more about this project (and their other work) and submit your entry if you would like to.
Mental Health, Health, and Life Update (September 2021)
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.
I Finally Left My House
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.
Finding Hope 