Posted on July 8, 2023
After the Hypermobile Ehlers-Danlos Syndrome diagnosis, one of my many referrals was to the Pain Clinic (something I didn’t know existed). At that point, I’d been in pain for about eight months and the fact that this thing even existed had me feeling optimistic for the first time in ages. But then the weeks started passing and that feeling faded. In that time, I believe there were a number of other referrals from the Physiotherapy and Occupational Therapy services so I don’t know how many times they actually had requests about me but someone finally got in touch five months after the initial referral.
This post spans from May 2021 to April 2022.
MAY 2021
The initial contact was over the phone. We got a call from one of the Pain Clinic team and we had a long conversation; we were on the phone for an hour. She asked me loads of questions and got a detailed history; she also talked me through what the Pain Clinic does and what they can provide. She went away to go over the notes she’d made and figure out what a good next step would be and we had a chance to think about what might be the right path for me.
JULY 2021
Seven weeks after the first call, we got a second call from a different woman; apparently she had a different background to the first woman we’d spoken with and had a load of different questions. We spent another hour on the phone and before we hung up, she told us that she would be taking her notes to the team (which is made up of a group of different clinicians and therapists) and that they would get back to me with their suggestions.
Two weeks later, she called back and, after some discussion, we decided that seeing a pain psychologist was the best way forward – understanding pain, understanding chronic pain, figuring out the triggers, learning how to manage it, and so on – and she set up the first of the six sessions.
AUGUST 2021
The first session was an hour long video call. We’d somehow missed the information packet that the pain psychologist had sent but she was kind enough to go through a lot of the information – a basic understanding of pain – during the session. It was okay but it was very focussed on managing pain, which felt incredibly frustrating: I was fine until May 2020 and then suddenly I was in pain and at no point had anyone stopped and asked why and I want to know why. But no one seems interested in figuring out the why. I got very upset: I spend my whole life just managing things. I don’t even really feel like a person anymore, just a collection of problems that need managing that leave me no space or energy for actually living. The call ended in tears with me curled up in a depressed ball on the sofa.
Given how much the appointment had taken out of me, we decided that it was just too much while I was in the final stretch of my Masters, which the psychologist was really supportive of, and we arranged to start again when it was over so that I could really make the most of the sessions.
OCTOBER 2021
I had my second session five weeks after I finished my Masters (I was completely exhausted from the final semester and, with my Granny’s death, it took me a while to find my feet again). It was mostly a catch up about how my pain had been since the first session; we talked about how constant it had been (just sometimes better, sometimes worse), how it doesn’t seem to be triggered by anything specific. I got so distressed just talking about it that the psychologist suggested that we talk to the advanced practitioner for more insight into hEDS related pain. She said she’d talk to their team and recommended I talk to my GP about a better pain medication. We, again, agreed to pause the sessions until we had some clarity on those two things. I still haven’t found a pain medication that works reliably but it wasn’t long before we got a letter for an appointment with the advanced practitioner.
NOVEMBER 2021
At the beginning of November, I had the appointment with the advanced practitioner. In hindsight, it was probably doomed from the start, considering how unwell I was having just started the ADHD meds – I had to stand outside for a good ten minutes trying to get the nausea under control. And then, just because things had to get worse, I got hit by the electric shock like pain in my back right as the appointment was starting; I could barely hear what everyone was saying, the pain was so debilitating.
As it turns out, there had been some sort of confusion or miscommunication because the two doctors were under the impression that they were showing me some physio-like exercises rather than give me guidance about hEDS related pain as I had discussed with the pain psychologist. One of them just kept talking about all of the “ingredients” of pain – like diet, sleep, exercises, medication, levels of anxiety, emotional state, and so on – and after a while, I just couldn’t keep my mouth shut. I was upset, in pain, and feeling so sick; I just couldn’t listen to another person give me vague advice without telling me how to actually apply these things to my life with all of my problems. And, on top of that, I was sick of everyone dodging my questions: why would this pain just start and why is ‘management’ the only thing being talked about? Why is no one interested in finding out why it started and whether it can be fixed? When the pain started, the only thing that had changed was my anxiety over the pandemic and it’s not like I was the only person who was experiencing that. So why did it start? If it can just appear, what’s to say it can’t disappear again if I do the right things (which obviously relies on me knowing what the right things are)?
Eventually this doctor gave me a somewhat murky explanation: that the trauma of the autistic challenges and the anxiety relating to the pandemic, compounded by the de-conditioning of the stabilising muscle in the early months of the pandemic, has resulted in the pain I’ve been experiencing. I’m not convinced by this but it’s the closest thing to an explanation that I’ve received so far. Anyway, they said that they’d take my case to their multi-disciplinary meeting and see what the suggestions were. I’ll take what I can get but I didn’t have a lot of hope: the last time I was in a similar situation, the Chronic Fatigue Service told me my case was too complicated and then just abandoned me. I’ve also had NHS doctors tell me that the NHS can’t help me and that I should go private – like that’s the automatic next step. They do know how expensive private healthcare is, right? Particularly if you have a chronic condition? So I did not leave that appointment feeling optimistic.
Later that month, we got a letter informing us that the original referral to the Pain Clinic from December 2020 had just gone through. Eleven months that took. I’m trying to be grateful that one of the other referrals went through faster but it was hard when it felt like we hadn’t made any progress at all.
APRIL 2022
The pain had reduced some by the end of 2021 but it flared up again (mostly in my hips and lower legs) in early February, which was likely exacerbated by my lack of movement while struggling with the effects of the ADHD meds – extreme nausea, depression, insomnia – and therefore not swimming. Things were better for a while – between more daily movement and starting hydrotherapy – but then it flared up again in late April, with awful pain in my elbows, arms, and hands.
When I realised how long this post was getting, I decided to split it up by year (yeah, because the whole process took actual years). This is the first instalment from Spring 2021 to Spring 2022. The next part will be up soon.
Category: adhd, chronic fatigue, chronic pain, covid-19 pandemic, death, diagnosis, emotions, exercise, heds, hydrotherapy, identity, medication, mental health, sleep, therapy, treatment, university Tagged: adhd, adhd medication, advanced practitioner, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, chronic fatigue, chronic fatigue service, chronic pain, covid-19, diagnosis, ehlers danlos syndrome, gp, heds, hypermobile ehlers danlos syndrome, hypermobility, masters, masters degree, nausea, nhs, occupational therapy, pain, pain clinic, pain management, pain medication, pain psychologist, pandemic, pandemic 2020, pandemic anxiety, physiotherapy, private health care, side effects, swimming
Posted on July 1, 2023
Given my health situation – living with multiple chronic illnesses that require daily management – I thought it might be interesting to make a list of the things I need and use everyday and maybe if any of you guys live with chronic illnesses, you could compare it to what you use. Are these things helpful to you? Might they be? Are there things that are helpful to you that aren’t on this list?
GLASSES – This is a pretty obvious one. I can’t see three feet in front of my face without them; I am incredibly short-sighted. Both of my biological parents are or were short sighted and I believe that certain forms of Ehlers Danlos Syndrome (EDS) can affect your eyesight. Regardless, I’m not going anywhere without my glasses.
MEDICATION – I have certain medications that I have to take everyday, as well as some that are situation dependent. The most important are my anti-depressant, Phenelzine, and the beta-blocker, Propranolol, and I really feel it if I don’t take them; while it took them a while to take effect at the beginning, it can through everything off course if I miss a day. So taking your meds… very important!

PAINKILLERS – Okay, this isn’t an everyday occurrence but it’s very common, especially at the moment (I hurt my back about a month ago – a story for another time). I have them on me all the time and I regret it if I don’t. Pain can be so debilitating and if I don’t have something to manage them, if only to get home, then I’m in really trouble. I also get migraines that absolutely incapacitate me so having the pills that help with those is vital. I often feel like a walking pharmacy but I’ve learned the hard way – several times – that it’s better to be prepared.
LOTS OF WATER – Generally, none of us are drinking enough water but as a person with Hypermobile Ehlers Danlos Syndrome (hEDS), I’m sure I’m not, as hard as I try. When I was diagnosed, the recommendation was that I drink more than double what a person without hEDS is supposed to drink (x); I’ve been trying to build up my water intake but it’s a slow process. I also have Postural Orthostatic Tachycardia Syndrome (POTS), which often occurs with hEDS, and includes symptoms like dizziness, light-headedness, swelling in the legs after standing for short periods of time, palpitations, fainting, and more, all of which can increase in intensity when a person is dehydrated, after exercising, or during hot weather (I want to write a more in depth post about all of this when I have more time). Dehydration has also been linked to an increase in pain sensitivity (x). Increasing water intake has proven to help POTS symptoms so I’m doing my best to always have water with me (or cordial if the taste of water becomes a struggle, something my nutritionist okayed, given that I’d still be getting the fluids) and I think it’s helping me to drink more (x). It’s surprisingly hard though, to drink that much water.
MY PHONE – I know that many people talk about needing breaks and time away from their phones but, in general, having my phone around is more helpful than it isn’t. I find social media pretty triggering for my anxiety so I rarely find myself scrolling through Facebook or Twitter or Instagram (and I hate TikTok more than I can even articulate) whereas I find the apps for setting alarms and timers helpful, Duolingo really good for my anxiety (and mental health in general), and the Notes app vital to writing down thoughts and ideas to follow up on. I do find it stressful that it means anyone has access to me, can contact me whenever they want, but then Airplane Mode is right there… But generally, my phone is more helpful than not.
MY BULLET JOURNAL – Between my ADHD and my general anxiety about being organised, my bullet journal (or what began as a bullet journal and has evolved into a more personalised version of the system) is all but permanently attached to me. It has my list of commitments, the list of things I want to get done during the day, and anything else that might be relevant, like stuff to do with the cats or the house. I honestly don’t know what I’d do without it.
FIDGET TOYS – My hair pulling has been particularly bad recently (plus I’ve seriously struggled with chewing the callouses on my fingertips and tearing at a scar on my face) and after years of dealing with it, I have a slightly ridiculous collection of fidget toys that I rotate using as the urge to pull varies; sometimes certain fidgets are more effective than others. So I usually have at least within reach, whether that’s wherever I am or in my bag.
NOISE-CANCELLING HEADPHONES – Having had some very unpleasant experiences with just how loud the world is (you may remember this particular disaster), I got an amazing set of noise-cancelling headphones that have made navigating my hometown, London, transport systems, etc so much easier. I’ve recommended them to multiple people and those who got them have agreed that they make life – and all of its noise – a lot more manageable.

FACE MASK AND HAND SANITISER – I know that, for a lot of people, it feels like the pandemic has ended but, for many, many others, it hasn’t. I know immunocompromised people, those struggling with Long COVID, people who are still getting COVID and getting seriously sick so it certainly doesn’t feel over to me. If I’m out, I’m pretty neurotic about hand sanitiser and wearing a mask; I’m not perfect and I do sometimes forget, especially if I’m feeling overwhelmed in a social situation and there’s no prompt of other people wearing masks, but I’m still pretty on the case about it all.

A HIDDEN DISABILITIES SUNFLOWER LANYARD – I’m not sure when I first got my sunflower lanyard and I can’t honestly say it’s changed my life but there are certain places that it does make life easier, like at airports and concerts (and getting support in those sorts of places is so important). Mostly I wear it when travelling around London because having a big ‘autistic’ label around my neck reminds people to take care and hopefully be a bit more aware of what they’re doing and what’s going on around them. I’m sure there are people who see it and it makes them uncomfortable or contrary or belligerent (because, in my experience, those people tend to be everywhere) and I think there are places where it probably makes me more vulnerable but, on the whole, it tends to be helpful if I use my judgement.
JOINT SUPPORTS – Because of my hEDS, I struggle with a lot of pain in my joints (the gift that keeps on giving) so I have a handful of different supports and braces. I mainly use them for my knee and for my wrists, but I also have one for my back. They not only really help with my stability – something I’m struggling with more and more – but, as with my sunflower lanyard, they remind people that I am kind of fragile and that they need to be careful around me, especially on trains and the underground etc.
POLARISED SUNGLASSES – The last time I went to get new glasses, I mentioned that I have hEDS and the optician recommended getting polarised sunglasses because they can help with light sensitivity, something that many people with EDS struggle with: our eyes are sensitive can get really tired because they are made up of 80% collagen, which is – as we know – what EDS negatively affects. And if you can reduce the strain on your eyes – which these glasses do, even if you’re inside but it’s still very bright – then you can hopefully reduce the chances of developing problems with your eyes (again, EDS: the gift that keeps on giving).
LIP BALM – A common symptom of multiple types of EDS is sensitive skin and that can manifest as dry lips (and cracked lips that take ages to heal) so I try to always have a good lip balm around. My personal preference is the EOS Crystal Lip Balm in Hibiscus Peach, which I’m not totally sure they make anymore but it’s still available through various online stores. But it’s their crystal lip balms that are best for hydrating your lips (but it’s worth reading this article because some people have had allergic reactions to certain ingredients); the previous, more waxy versions were nice but I didn’t find them to be super effective. This one helps my skin recover really quickly (and stay hydrated) and I can barely feel it on my lips, a plus considering that the sensory experience of make up and skincare can be really difficult for me. But there are a lot of great ones out there; I’ve used several from The Body Shop that I would recommend too.
CBD GUMMIES – Over the last couple of years, my sleep schedule – for the most part – has been awful. Most nights I was getting a fractured few hours and then there were nights where I didn’t sleep at all. It was horrible and it just made my mental health even worse, which was pretty impressive given how bad it was when my sleep was at its worst. I felt like I’d tried every strategy ever suggested, including some pretty strong prescription sleeping pills; they worked-ish but I suffered from some pretty miserable side effects for not much reward. I’d always been vaguely resistant to trying CBD based products for some reason – I’m not really sure why – but I was desperate and ended up trying a few different types of CBD gummies. Within a few days, my sleep was deep and reliable again. Months later, it’s remained pretty good. Plus it’s helped me avoid relying on prescription pills, which I’ve had to do in the past even though it’s not generally advised (this was with the approval of my doctor); taking them every night can increase your tolerance and so they stop working and no one really knows what the long term effects are, although some people become addicted and can experience symptoms like hallucinations. So avoiding that is definitely a pro on the pro-con list. Research is still being done around CBD but so far it seems that the only problems are certain drug interactions, which would just involve a conversation with a doctor. None of those interactions were a problem for me so I’ve been taking them consistently ever since and my sleep has been so much better. They’re a constant presence on my bedside table.
So I hope that was of some interest, at least. As I said in my introduction, let me know if you use these things; let me know if you use other things; let me know if there are things that might work better than the ones on this list! Over to you!
Category: adhd, anxiety, autism, chronic pain, covid-19 pandemic, emotions, heds, life lessons, medication, mental health, pots, research, sleep, treatment, trichotillomania Tagged: ableism, ableist, anti depressants, antidepressants, asd, autism, autism spectrum disorder, autistic, autistic adult, beta blocker, braces, bullet journal, cbd, cbd gummies, cfs, chronic fatigue, chronic illness, chronic illnesses, collagen, covid, covid-19, daily, day to day, dehydration, dermotillomania, eds, ehlers danlos syndrome, everyday, everyday essentials, eye problems, eye strain, face covering, face coverings, face mask, face masks, fidget toy, fidget toys, glasses, hair pulling, hand sanitiser, headphones, heds, hidden disabilities, hydration, hypermobile ehlers danlos syndrome, hypermobility, injury, insomnia, joint stability, journal, lip balm, management, mask, masks, medication, mental health, myopia, noise cancelling headphones, noise sensitivity, organisation, pain, painkillers, pandemic, phenelzine, phone, polarised, polarised sunglasses, postural orthostatic tachycardia syndrome, pots, propranolol, sensitive skin, sensory issues, sensory overload, sensory overwhelm, sensory sensitivity, short sighted, side effects, sleep, sleeping pills, social media, stim, stimming, sunflower lanyard, sunglasses, supports, trichotillomania, water
Posted on June 26, 2023
It’s been a long time since I did a Week In My Life post but I thought they’d be fun to revisit. I don’t really have typical weeks anymore – every single one looks different with all of the different things I’m doing and experiencing – but I thought that might add to what makes them interesting; the format remains the same but the contents will always be completely different. This was a super busy week because, on the Monday morning after it ended, I was flying out to Germany so I had to get a lot of stuff done; there could be no putting it off and my ADHD brain did not like that. So it was stressful and busy and chaotic but there were also some really cool, fun, joyful moments too. So it was an interesting one to record.
The week in this post started on Monday 22nd May and ended on Sunday 28th May.
MONDAY
I was up at eight thirty and pretty much straight out to the hairdressers to have my hair coloured in preparation for going to Germany (I’d had it cut the week before). I find it takes several days to settle, for the sharp lines to soften and the colours to blend together nicely. I get so used to seeing it faded (because it’s expensive to get redone – I often top it up out of a box but needed it to look particularly nice on this occasion so didn’t) that seeing it fresh and bold is shocking, in the best way. I love it; it looks amazing every time and I can’t believe that I ever considered doing something different with it (apart from wanting blue hair because who doesn’t). It makes me feel so much more confident; it makes me feel like me.
Back home, I got stuck into some admin work. It took a lot of effort because my brain really didn’t want to do it but I got the necessary emails sent, submitted my Amanda Tapping story for her livestream (which I wrote about in my last post in case you missed it), did some diary catch up, and worked on several upcoming blog posts. I feel like there is never any time to breathe anymore, like I’m always only just keeping up so there isn’t even a moment to stop and think before moving onto the next thing. It’s really stressing me out.
When I had a brief look at social media, Twitter specifically, because of it being Mental Health Awareness Week, all I saw were the usual vague platitudes, corporate statements that didn’t mean anything, and pictures of the royals going to various events. The whole thing infuriated me and I started ranting, tweet after tweet until the thread was barely coherent and I nearly posted it but then I stopped and thought about what I was doing. The thoughts were rushed and frustrated, it’s so easy be taken out of context when you have so few characters, and Twitter can be a pretty toxic place. So I saved the tweets and resolved to elaborate on the thoughts in a better medium, like this blog (which I did and it turned into this post.)
I spent the evening packing since I was going to London the next day and then went to bed relatively early for me, around midnight. But unfortunately, I couldn’t sleep, despite doing everything that usually helps (a routine I have long since refined); I couldn’t seem to relax, my whole body shaking. I was still awake at four, practically vibrating with tension even as I tried to relax enough to sleep. I’ve had sleep paralysis before and it wasn’t that so I don’t know what was going on; I just kept finding my jaw clenched, my hands in fists, and even my toes curled. It was hideous and exhausting.
TUESDAY
I struggled up at nine thirty, got myself showered and dressed, and settled on the sofa with my laptop. I had some more admin work to do, more emails to send, and so I worked through that list before taking a break and scrolling through social media for a little bit. Then I spent several hours working on blog posts and an academic paper about Taylor Swift’s songwriting that I had to submit before I left for Germany; the paper itself was already written but I had a list of edits to work on plus two re-recordings and a new album to integrate into the existing relevant parts of the paper. I don’t mean to be so cryptic but I don’t want to talk too much about the specifics of it until there’s more certainty surrounding the project; it still feels very up in the air, to me at least. But maybe that’s just because it’s the first time I’ve done anything like this.
Mid-afternoon, I had therapy. I don’t want to get too deeply into what we talked about; that is very personal after all. But we did talk about all of the things I had to do before leaving for Germany, as well as how I was going to handle the trip to Germany itself. Sometimes my therapist brings a friend’s dog with her, which is always a bonus. I love her and she loves me and we have some great cuddles, which are very good for balancing out some of the hard stuff we talk about. But no such luck that day (it’s fine though – it’s not like I go for the dog). We finished on time and I managed to get to the station in time to catch my train. It isn’t a long journey but I filled the time, working on blog stuff. I had to make every minute count with so much to do before the week ended and I headed off to Germany.
I got off the train at Victoria station to a very strange sight. I’d paused several feet beyond the barrier to rearrange some of the stuff in my hands and pockets and saw a man standing with a wheelchair and a dog. As I stood there, he encouraged the dog into the wheelchair and it jumped up, turning around and sitting down like it knew exactly what to do. And then, out of his pocket, this man pulled a lizard – a bearded dragon, maybe – and placed it on the dog’s back. Again, it was like both of these animals had done this a hundred times and knew exactly what they were supposed to do. And off they all went, the man pushing the two of them in the wheelchair. It was so surreal to witness. I got the rest of my stuff rearranged and headed for the tube station, fascinated that nobody else seemed to have found this a strange moment to be present for. But then it is London, I guess; everyone is very ‘stay in your lane.’ The whole situation was just so bizarre and I was very aware that I was probably watching something that I’d never see again.
Usually I stay with one of my parents when I do an overnight in London but she already had someone staying so there wasn’t room for me. I ended up staying with family friends – as did my Mum actually since she was was working in a school in London, starting early the next morning – which was really nice because I hadn’t seen them for ages. So it was really nice to catch up. We were all tired and had early starts so we didn’t last long (and had to create a schedule to get everyone in and out of the bathroom in order for everyone to leave on time, which I don’t think I’ve had to do since I was a teenager in secondary school). It took me a while to decompress and go to sleep but it was still quite early by my standards, thank goodness.
WEDNESDAY
I had to get up at half six to get ready, which is most definitely the earliest I’ve had to get up in years. I had a shower, got ready, had some breakfast, and headed for the underground. An organisation I’m a part of, The F List, which supports female and gender minority researchers in music research, particularly research that supports gender equality in music and music research was holding an event, The F List Gender in Music 2nd Annual Research Hub Conference, at my university and I was keen to learn as much as possible – my brain finds learning new things positively addictive, something that I don’t think is uncommon for people with ADHD – even if I was a bit nervous about how long I could stay focussed for. But fortunately that wasn’t too bad and they’d made accommodations for anyone who needed them, although they were very neurodivergent sounding accommodations (as it turned out, there were so many neurodivergent people there that I was starting to wonder if we were all members of the club). As they said on their website: “The F-List Research Hub aims to expand and better introduce the existing feminist and interdisciplinary collective of researchers, dedicated to evidence-led activism which aims to create an environment in which women and gender expansive people in the music industries will be able to more successfully start and sustain their music careers for longer.” And the theme was ‘identity’: “Identity is a central theme in feminist research, which sees ‘who we are’ intimately entangled with ‘what we research.’ The definition above is deliberately broad and (we hope) inclusive to all who seek to research gender issues in music.“
They ended up asking me to write the blog post for the event, which was really exciting. I would be taking notes all day anyway so I just added some extra notes about how the event worked, how everyone socialised, how things felt, in order to sum up the day accurately. We came up with a plan for what the blog would focus on and how long it would be and I played around with it in my head as I listened to the speeches and presentations.
Professor Sophie Daniels, one of the directors of The F List, the head of the songwriting program at ICMP, and my tutor for years, gave the keynote speech, which was really cool. This is what I wrote for the F-List blog because I’m not sure I could say it better: “After a bit of mingling, the day began with the Keynote speech from Professor Sophie Daniels, where she discussed, amongst other things, her career in the music industry, her founding of the songwriting program at ICMP, her artist project, Liberty’s Mother, and it’s associated advocacy work, as well as her research into why we write songs. I first met Sophie in 2014 and she was my teacher on and off for seven years while I studied at ICMP; so while I knew much of what she was sharing, it was really insightful to hear it presented this way, through the lens of feminism, particularly in the music industry and music education. Sophie has always inspired and supported me – as a songwriter, an artist, a researcher, a mental health and Autism advocate, and, ultimately, as a person – and so it was very special to watch her give the Keynote speech.” And it was: it was really special. I will never get tired of hearing ‘I Can Love You From Here.’ It makes my heart ache now just as it did when I first heard it eight years ago.
It was a lot of information but the presentations were short, about fifteen minutes each, which was the perfect length for my ADHD brain and each one was really interesting; I don’t know if it’s the neurodivergent brain but learning new things is always fun for me. The topics ranged from Trans and Non-binary inclusion in the music industry to support for those with ADHD in the music industry to exploring black feminism in the music industry to investigating the interwar generation of women composers at the Royal College of Music, as well as a conversation with the CEO of the Independent Society of Musicians. At one point, she talked about how badly the arts are treated and how they’re so important because they give life meaning: “They lie at the heart of what it means to be a human being.”
Oh, and I greatly enjoyed being introduced to this song…
I found all of it interesting – I really did – (although I did need some time in the quiet space because it was a lot of information and a lot of noise) but I think I was most engaged by the presentations on support for neurodivergent individuals in the music industry, by the one on the emerging trends in the careers of women in the music industry, and the one investigating the interwar generation of women composers at the Royal College of Music. I did wonder whether my Granny would actually be part of that group but when I worked it out, I realised that she wouldn’t have enrolled until after the end of the period of study. It would’ve been so bizarre if her name had appeared in that research.
When the presentations finished, we congregated in the attached cafe to socialise and network, which turned into a commemoration Tina Turner dance party, which was a fun if bizarre way to end the day. It was hard to leave: it was such a nice group of people plus I was dreading the long journey home. But it was a good day; I learned a lot, I fell into some really cool opportunities, and spent time with friends, old and new.
I did eventually make my way to the station and catch a train home. My Mum very kindly picked me up – I was beyond exhausted from so much standing and socialising and focussing all day – and when I got home, I went straight to bed. I had a look at social media for a while, decompressing from the outside world, before going to sleep around one, which isn’t bad for me at the moment.
One of the opportunities that came out of the day was the chance to do the write up – a blog post – of the day. You can find that here.
THURSDAY
I spent most of Thursday at my laptop, working on my Taylor Swift paper. I was really on a roll; I felt like the Kermit the Frog at a typewriter meme. I had already been writing and making progress with it but I hadn’t really managed to get on a roll until that morning and having finally hit my stride, I was having a blast. I was expanding on ideas already present in the paper and building in new ones; the only problem was that I was just increasing the word count and the task of cutting it down was looming. But I was enjoying the fun parts while they lasted and I vaguely resented being interrupted when I had to go out.
It’s been a really long time since I had my last appointment with my psychiatrist, although we’ve stayed in touch. He was in a new office – with a gorgeous view of both the Downs and the sea – and it was much nicer than the last one, which had felt incredibly medical and sterile. I like this one a lot more. And, in the waiting room, there was a painting that I instantly fell in love with: a seascape by a local artist called Sara Hill. I would love to own something like this, to get to look at it everyday. It was completely gorgeous and I found it very soothing to look at, which I suppose is fitting for a psychiatric office.

The appointment went well. My psychiatrist and I talked through my experience with the Phenelzine and what has improved and what’s still a struggle. I’d wanted to discuss increasing the dosage, which we did. It had been too much last time – I felt very overstimulated all of the time – but I thought that, given that I’ve been trying to climb out of a deeper, darker place, a higher dose might be what I needed to make it that extra distance. We talked through that idea – and how much I want to write more again, which I just haven’t been able to – and he agreed. And, proving how well he knows me after all of this time, he suggested we judge the effectiveness by how much I’m writing. Sounds good to me.
Back home, I tried to re-harness my previous focus on my paper and while it wasn’t quite as effective, I did manage to get another good chunk of work done. I even had some time to do a bit of blog writing since I doubted I’d have much time to write while in Germany, I needed to have something prepared for the Saturday at the end of the trip. By the time I went to bed, I was completely exhausted and my brain felt vaguely like I’d put it in the microwave for too long.
FRIDAY
Despite going to bed so late, I was able to drag myself up early for a very important Zoom call. I don’t want to talk about who it was with and what it was about yet, not until things are more certain. But it was a very exciting call and, all being well, some awesome life things will come out of it. That’s all I’ll say for now.
I didn’t have long until my next Zoom call so I spent about ninety minutes or so working on blog stuff. I just needed some decompression time and I find blog post writing very soothing for some reason; I think it just allows my brain to turn over an idea, over and over and over until it makes sense, and getting the words into a satisfying rhythm.
I had a really nice Zoom call with one of my best friends and we ended up talking for about two hours. We can talk about anything, from movies to the really big stuff in our lives, and we can talk for days without needing a break; we can just go off on these tangents that go on for hours and then we eventually backtrack to our original conversation topic, only to go off on another tangent. We have a lot in common and we have so much fun together. At one point, we tried to figure out how we became friends – having met on the MA – but we couldn’t: it seems that we both thought we were already friends and just skipped the whole ‘becoming friends’ part of the friendship, which is actually pretty on brand for us now that we are really good friends. I have no idea if that makes any sense but that’s how it is.
We hung up so that I could get ready and go to therapy. Again, I don’t really want to talk in detail about what we discussed but, in general, we talked about going to Germany, the things I was anxious about, and how I might manage them. I wasn’t feeling too stressed (which turned out to be ridiculous because I found the whole trip incredibly stressful) so it wasn’t too bad.
When I came out of therapy and checked my phone, I saw that Taylor Swift had made an announcement, the release of Midnights (The Late Night Edition) and the new song, ‘You’re Losing Me.’ Someone had already shared it online. Had the song been released somewhere where I could listen to it legally where Taylor would get paid for my purchase or stream, I absolutely would’ve done so – I’ve always felt very passionate about that – but since it’s only available on a CD one can buy at tour dates, I don’t feel bad listening to it online. And what a song it is; it immediately joined my 2023 in Songs post because I love it so much, especially the lyrics. I’ve talked about it more there (I’ll add the link when that post goes up in December) but the ongoing medical imagery is heartbreaking, the way the bridge just keeps building is one of my favourite Taylor techniques, and the imagery in the lyrics all had me absolutely hooked (I particularly love “Remember lookin’ at this room, we loved it ’cause of the light / Now, I just sit in the dark and wonder if it’s time,” “And I wouldn’t marry me either / A pathological people pleaser / Who only wanted you to see her,” and “Do something, babe, say something / Lose something, babe, risk something / Choose something, babe, I got nothing / To believe / Unless you’re choosin’ me / You’re losin’ me”). It’s a gorgeous, gorgeous song and weeks later, I’m still listening to it over and over. So that was a moment to have missed because of therapy.
Back home, I went back to working on my paper. One of my parents stopped in for dinner and we had a good catch up before I got back to work. Then I had some decompression time, writing more of my Mental Health Awareness Week blog post before going to bed.
SATURDAY
I spent the morning working on my paper before catching a train to London. I used the trip to keep writing and then navigated the tube system to get to the Thin Air exhibition at The Beams near London City Airport. And it was absolutely stunning…
The exhibition was made up of several different rooms, designed by different artists or artistic collaborations. I didn’t like all of them but of the ones I liked, I absolutely loved:
It was really cool and I’m really glad we got to see it before it closed (while we were in Germany). I would’ve stayed longer if I could’ve but I still had so much to do and they do encourage you to keep moving through the rooms.
Then it was back on the train home and even though I was exhausted, I continued working on the paper and on the upcoming blog posts. I also managed to reply to some of the messages I’d been unintentionally procrastinating over, accidentally pushing them back in favour of getting more work done. So that felt like an achievement too. I was pretty much getting things done out of sheer willpower – something that absolutely does not always work but did this time for some reason – which I was very relieved by. Of course, so pleased to be on a successful streak and unwilling to break it, I ended up going to bed much too late.
SUNDAY
It was a very goal focussed day. I managed to get my blog post of the week – So That Was #MentalHealthAwarenessWeek… – done and published relatively early in the day and then I moved on to the piece about The F List conference. I had all of my notes from the actual day and I’d been making notes since then: thoughts that felt important to include, anecdotes that would make it more personal, and so on. I got that done mid afternoon, I think, and sent it off (they really liked it and it was published and shared a few days later).
Afternoon and evening, I packed for Germany. I was going to be there for a week but I am a terrible packer – I just find it really hard. I wonder if that’s an ADHD thing, given that it’s an organisation and planning based skill. Interesting; I’d never thought of that. I don’t know but possibly. I’ll have to do some research. Anyway, as I said, I’m a really bad packer (I once packed for five weeks in Australia two hours before I left for the airport – the dread and procrastination were so bad) so I struggled through that as a task. Eventually I got that done, with probably much more than I’d need.
I spent the rest of the evening trying to finish my Taylor paper. This edit was essentially finished – apart from one section, which I couldn’t work on until I got some of the literature they’d promised to send me (and now have sent me) – but it was way over the word limit and, as hard as I tried, I couldn’t get it down without cutting out significant parts of whatever point I was making or the evidence for it. But I kept trying and trying and trying, as well as tidying the whole thing up. In the end, around two in the morning, I decided that I would send it as it was and ask the organisers – all of them accomplished academics – for their advice on the word count. I’ve never done this before but they have; hopefully they can help me get it down to the required length without compromising the content on the next edit. So I stopped at two and went to bed, my laptop on the bedside table so that I could send it first thing in the morning.
It was a very anxious week: there was the pressure of trying to get everything done, the unknowns of the conference, and the anxieties around going to Germany. It was hard. But it’s also really nice to be productive again, to be working and producing, even if my mental health and neurodivergence do make that a struggle sometimes; over the last couple of years, I’ve been so paralysed by my mental health problems – by my depression and anxiety specifically – that I’ve barely been able to do anything. So just to do things at all, let alone the amount of things I’ve been doing, is kind of amazing to me.
Category: adhd, anxiety, autism, body image, book, depression, emotions, family, medication, mental health, music, research, sleep, special interests, therapy, treatment, university, writing Tagged: a week in my life, academia, academic, academic research, adhd, amanda tapping, art, art exhibition, art installation, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, blog, blog writing, body image, conference, dosage, dose increase, exhibition, friend, friends, friendship, gender in music, germany, hair, hair colour, hair dye, hairdressers, immersive art, insomnia, installation, liberty's mother, light art, light installation, livestream, london, medication, medication increase, mental health, mental health awareness, mental health awareness campaign, mental health awareness week, mental health awareness week 2023, mhaw, mhaw 2023, midnights, midnights 3am version, midnights album, midnights album late night album, neurodivergence, neurodivergent, neurodiverse, neurodiversity, packing, pain, phenelzine, psychiatrist, psychiatry, rerecording, rerecordings, research, research conference, research paper, sleep, social media, songwriting, sophie alagna, sophie daniels, sound art, taylor swift, tension, the beams, the f list, therapy, thin air, travel, travelling, week in my life, wiml, writing, you're losing me, zoom

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.
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.
Finding Hope