Posted on November 19, 2023
This week – from Monday 13th to Sunday 19th November – is Self Care Week, a UK-wide awareness week established and run by the Self Care Forum, a charity that aims to spread understanding about the positive impact of self care and helping people to implement it into their everyday lives. This includes the benefits of good nutrition and exercise, of taking vitamins (like vitamin D, especially for those whose health means they spend all or most of their time inside), of managing our mental health; they also guide people in making more positive lifestyle choices (to no one’s surprise, ‘homelessness’ is not on their list – fuck you, Suella Braverman), go into schools to help improve health literacy, and support people in understanding how to manage both short and long term health conditions. All good things!
I can’t speak to their understanding of neurodivergent or Autism focussed self care – I haven’t been able to find anything on their website – although much of their advice applies to all of us as human beings with the same basic needs. I thought that, in recognition of this week and the importance of self care, I’d put together a list of strategies that I personally rely on, many of which I’ve developed to help me manage as a neurodivergent person.
Obviously not all of these will work for every person, the personal ones that is: the physical ones apply to all of us to a certain degree, depending on our individual circumstances and needs. But when it comes to the personal ones, it’s unlikely that all or even most will work for everyone. But hopefully, given how many I’ve included, there will be something that’s helpful – or just worth trying – to anyone who reads this…
PHYSICAL:
When I’m struggling, I know that I need to check in with my body. I’m really not very good at noticing my body’s signals – my interoception is pretty poor, something that isn’t unusual in neurodivergent individuals – so I often have to go through this list consciously to figure out what it is my body is asking for. Others are better at this but it’s always worth checking to make sure that there isn’t a straightforward way of understanding why you might be feeling the way you do and of improving both your physical and mental state…
PERSONAL:
Here is a short list of the things that help me to manage when I’m struggling, when I’m feeling overwhelmed and burned out, when my mental health isn’t great. It’s a constantly evolving list, depending on what’s going on in my life and what my needs are, but this is my current list of self care strategies, ones that are the most helpful at this point in time.
I’ve been working on my self care this year and there are times when I can really see the difference it’s made: I’m really enjoying exercise for the first time in my life; I’m drinking more water than I ever have; my relationship with social media is better than it’s ever been; I feel more confident in my friendships; and so on. There are still plenty of aspects to work on but I can see the positive effect it’s had on my life.
I’d love to know how you guys feel about all of this, about self care in general and on a personal level. What self care strategies do you use? Which ones do you find the most effective? Here’s a great list if you need more ideas.
Category: about me, animals, anxiety, autism, body image, book, chronic fatigue, chronic pain, depression, emotions, exercise, family, favourites, food, hydrotherapy, medication, mental health, music, pots, sleep, special interests, therapy, tips, writing Tagged: animal, asc, asd, autism, autism spectrum condition, autism spectrum disorder, awareness week, body, body image, book, breath, breathe, breathing, breathing techniques, breathwork, cat, cats, chronic fatigue, chronic pain, crafts, demands, diary, dog, emotional needs, exercise, family, favourites, film, food, friends, health, hunger, hydration, hydrotherapy, interoception, journal, journaling, mental health, mum, neurodivergent, pet, pets, physical health, physical needs, physiotherapy, puppy, relaxation, relaxation techniques, rest, self care, self care awareness week, self care forum, self care week, sleep, social media, special interests, support group, swimming, therapist, tv show, wellbeing, writing
Posted on August 27, 2023
TW: Mentions of ableism, severe depression, suicidal thoughts and ideation.
Us international Taylor Swift fans have been waiting for The ERAS Tour to come and visit us for months and finally, we have dates! (Through some bizarre twist of fate, the announcement, the registration, the extra dates announcement, and the opening of resale tickets all occurred while I was at therapy, so I don’t think it would surprise anyone to learn that I rescheduled the sessions that were booked for the days of the actual ticket sales – thank god for my very understanding therapist).
So the tour is coming – possibly the most exciting event of next year – but before I could be excited about that, the ticket sales had to be navigated. And given how horrific the US sale had been, I was – at the very least – very apprehensive. I hoped that, after the previous fiascos, this sale would be smoother but, having witnessed the anxiety and misery and disappointment, I couldn’t help but worry that this sale would be just as bad, with the added hurdle of trying to get accessible seating.
Having pre-ordered the Midnights album during the period in which it granted you a code for tour dates, I had access to the ticket sales a week earlier than the ticket sales for which you had to register. That was definitely helpful, in some ways at least. In the week leading up to this first sale, my Mum and I spoke to the Wembley accessibility people several times, trying to get the most accurate information about getting tickets through them. My Mum had to actually make the calls since making a phone call is something that is a real struggle for me as an autistic person, especially when the phone call has high stakes or I have anxiety about it (I can handle other forms of communication – I just can’t gather enough information from just a voice to keep up a conversation in real time and the anxiety of screwing up just makes the processing worse and the whole thing snowballs until I become non-verbal or descend into a meltdown). So Mum made the phone calls and we tried to get the clearest picture we could, but the information changed with every call and, on the Friday (with the tickets going on sale on Monday morning), they still weren’t sure of anything. They were really only certain of one thing: they were very, very aware of how high the demand was, part of the reason why they were so reluctant to commit to any of the information they did have. It was very stressful and I spent the weekend consumed with anxiety over whether or not I would be able to get tickets to even one show, having hoped to go a couple of times with different friends and family members. The dread I felt at the thought of not getting to go was paralysing.
Most people don’t seem to understand the intensity of my emotions. Technically, it could be part of being neurodivergent or mentally ill but it’s always just felt like part of me: it’s me, hi, I feel everything at 500%, it’s me. I feel every emotion with my whole body; it’s just always been that way. And people have always been weird about it (especially when it comes to loving Taylor actually – I’ve been mocked and harassed for years for being a fan of hers, often for reasons that completely baffle me). It hurts – and that hurt is very intense too – but I’d always rather love things, regardless of what people say. Taylor and her music (and seeing her live) are and always have been so important to me, getting me through hard times and bringing me such life affirming joy; as hard as it can be, it doesn’t surprise me that the thought of not getting to see her live after waiting so long feels like a lifeline being cut.
Monday morning, I woke up so anxious that I couldn’t eat. I couldn’t do anything. When the time came, when the online queue and phone lines ‘opened,’ Mum rang the accessibility number. It rang and rang until it went through to an automated message before hanging up. We tried again. And again and again and again. We kept getting the same message and we were still calling when the queue moved from the first of the Wembley shows in June to the first of the Wembley shows in August in the early afternoon. We were still calling as the clock inched towards five and the closing of the phone lines. I’d been sitting with Mum, unable to do anything and on the edge of the meltdown all day. I was exhausted, in pain, and swinging between misery and rage, in tears over how awful the experience was. It was (and still is) so desperately distressing that it seemed literally impossible to get a ticket for accessible seating, to access the concerts as a disabled person. It just felt – and feels – like yet another part of the world telling us that we’re not worth the effort, that we don’t matter as much as everyone else. It’s a deeply hopeless feeling. And as if the situation wasn’t hard enough on its own, I’ve been struggling with suicidal thoughts and impulses for a while now and between the dwindling possibility of getting accessible tickets and the crushing display of ableism, those thoughts were only getting louder and more difficult to block out.
Tuesday was more of the same, just with an awful day and awful night’s sleep under my belt. Mum and I were glued to the sofa again, calling over and over and over. Morning turned into afternoon, another show disappearing. Wembley Stadium had tweeted a response to the criticism on social media: “Due to unprecedented demand waiting time for Taylor Swift | The Eras Tour Disabled Access is longer than normal. For those unable to wait on the phone we have a call-back system.” Seeing that filled me with the urge to throw my phone across the room: when we’d spoken to them, the ‘unprecedented demand’ was the only thing they had known about. I wanted to scream.
The night before, a friend had suggested looking at Twitter to see if other disabled fans had posted about having a similar experience. I didn’t remember her suggestion until the afternoon but once I did, I went searching and found my experience repeated over and over. On one hand, it was reassuring because I wasn’t alone but on the other, here was this huge number of people who weren’t able to get tickets because Wembley’s accessibility department wasn’t doing its job. I spent the afternoon tweeting back and forth with this group of people: trying to find a better way, sharing different phone numbers that different people had had success with, updating each other on our progress, sharing the successes and the miseries and frustrations. One fan, Faith Martin (she wrote a great piece for Metro about what the experience was like was disabled fans), spent an amazing amount of time trying to help people get tickets, long after she got tickets for herself; I really appreciated her support and encouragement. (I’m sure there were other fans doing this, helping other fans for other UK venues but Faith is the person I saw doing this, the person who helped me.) Having that little community in such a fraught time was comforting; I’ve never had anything like that before.
Eventually, just before the lines closed for the day, we got through and were finally, finally able to get tickets. When my Mum hung up the phone and triumphantly announced that we had tickets, I collapsed back onto the sofa and burst into tears. I was overwhelmingly relieved but also totally overwhelmed by the exhaustion and anxiety making my hands shake, by the excruciating pain in my limbs, back, neck, and skull. But most of all, I was just completely overwhelmed by how hurt I felt by the ableism of the process (especially compared to the ease of the online general ticket sale), by how little my very existence meant to them even though I was paying them for the space I would be inhabiting. God, you know it’s bad when you’re paying to take up space and still no one cares because of the ‘inconvenience’ you present. I was pleased – of course, I was – but all the other big emotions were drowning it out. I knew I’d be thrilled later on, once I’d recovered from the unbelievable stress of those two days.
And it’s true. It took a couple of weeks to fully return to my day-to-day state but now that I have, I am really, really excited. But having said that – and I know I’ll say it a lot over the next year – I still feel hurt by how Wembley handled it all, how they treated their disabled patrons. I’m hurt and I’m angry and if there was anything I could do that would affect any change, that would be more than me simply shouting into the void, then I’d do it. Without a second thought. But if there is, I have no idea what it would be. So here I am, sharing my experience about, if only to remind people that this sort of thing – and worse, of course, much, much worse – happens every day. Even the processes set up supposedly to help us are failing us, and worse, hurting us.
I’ll leave you with what I tweeted after I got my tickets: “I knew that getting #ErasTour tickets would be hard but I didn’t expect the level of ableism. By making it so much harder for us, they’re essentially telling us that we aren’t as important as everyone else, that we don’t matter as much, and that was deeply, deeply upsetting.”
And here are some of the articles that have been written about this, including the experiences of several disabled fans. (Note: please don’t read the comments sections of these articles because the dismissive, ableist bile coming from people – most of whom are totally missing the point – is honestly painful and there is no reason to subject yourself to that if you don’t have to.)
Category: about me, anxiety, autism, chronic fatigue, chronic pain, depression, emotions, family, heds, meltdowns, mental health, music, special interests, suicide Tagged: ableism, ableist, accessibility, accessible seating, anxiety, asc, asd, autism, autism spectrum condition, autism spectrum disorder, autistic, autistic adult, bullying, carer, carer's ticket, chronic fatigue, chronic fatigue syndrome, chronic pain, companion ticket, concert, depression, disability, disabled, disabled access, eds, ehlers danlos syndrome, emotional rollercoaster, enjoyment, eras tour, eras tour 2024, eras tour london, exhaustion, fan, fans, fatigue, fibromyalgia, fun, heds, hypermobile ehlers danlos syndrome, institutional ableism, joy, live music, mental illness, mum, music, pain, phone calls, recovery, rest, safety, special interest, stress, suicidal ideation, suicidal thoughts, swifties, taylor swift, tension, therapy, ticket, ticket sales, tickets, twitter, wembley, wembley stadium
Posted on December 24, 2022
TW: Mentions of depression and suicidal thoughts.
I think it’s safe to say that this has been the worst year of my life. I’ve been so depressed and suicidal and that has just swallowed up the whole year. And feeling like that, it’s hard to access gratitude, even when you know that there are things to be grateful for. So I’m trying, according to my yearly tradition, to focus on the things that I know I’m grateful for, even if I can’t always feel it properly.
My Mum – What can I say, my Mum is amazing. So much of this year has been so awful and she’s been with me through all of it; she’s never given up, even when I kind of wish she would. She has been my champion. She’s the best and I honestly don’t know what I did to deserve her.
My family – I’m not sure what more I can say about my family, about how great they are. I have not been easy and my issues have taken up a lot of energy and yet, they have been there for me, supporting me in whatever way I needed at the time without judgement. There are so many different things I could write about, moments I could mention, but the most important thing to say is that I love them, more than I could possibly express.
The friends who’ve supported me – I am grateful for all of my friends but I wanted to give a special shout out to the friends who’ve been especially supportive over this last year. I’ve felt very alone and when friends reached out to me, it meant (and means) a lot. They didn’t necessarily do anything (although a few friends gave me gifts this year that I feel utterly undeserving of but am deeply grateful for nonetheless) but they sat with me in it, whether that meant actually talking about it all or watching TV together.
New friends – Despite the fact that I haven’t been out much this year, I have actually made some new friends this year, which has been nice. The pandemic hasn’t exactly been conducive to meeting new people and neither has my depression but the new friends that I have made, especially the ones that I have some quite heavy stuff in common with, have been a gift.
The connections that survived the pandemic – There were friends and acquaintances that I didn’t see for a long time because of the pandemic, several of those in Nashville for example, that I worried wouldn’t be the same after so long. Part of that is just my relentless anxiety that maybe no one actually likes me but part of that is also that everyone has a life, has their own stuff, and went through a trauma with the pandemic; I wasn’t sure if some of my relationships would survive all of that and I wouldn’t have held it against them if they hadn’t. But to my surprise and delight, many of these connections did survive the pandemic and even managed to grow over the year.
The cats – I don’t know what I’d do without my gorgeous cats; I really don’t. They’re adorable, they’re snuggly, they’re funny, they’re comforting… The list goes on. I feel very lucky to have them; there’s always one around to cuddle up with or make me smile. Lucy ushers me to bed when I stay up too late and keeps watch until she’s sure I won’t get up again. Tiger headbutts me until I stroke her and then she purrs like I’ve bestowed the greatest honour upon her. Mouse is slowly becoming more affectionate, having always been less sociable than her mother and her sibling, and has started seeking us out for strokes and cuddles. Sooty gets obviously impatient if I don’t make space for her on the sofa and then instantly settles down, stretched out and pressed up against me. Sweep appears and flops dramatically on top of her mother, like they’ve been separated for weeks (and, bless her, still struggles with the cat flap occasionally despite it having been there her whole life). They’re all the sweetest of little souls and I love them dearly.
Finding a private pool for hydrotherapy – It took many months and several attempts but we finally found a private pool that was a good fit for me to do my hydrotherapy exercises. Many of the preceding ‘failures’ didn’t allow me to do certain exercises or required travelling a fairly significant distance, so I am very pleased to have found such a gorgeous pool that has everything I need almost on my doorstep (plus the owners are lovely and their passion for decorating the pool for each holiday always makes me smile). When my routine is running smoothly, I manage to get there three times a week, which is great; sometimes it’s less than that but such is life. I’m doing my best here.
The fictional worlds I can escape into – One of my main coping mechanisms this year has been watching TV shows, old favourites mostly, and reading fanfiction and escaping into those familiar, comforting worlds. They’ve been both an escape and a relaxation technique. They give my thoughts somewhere safe to go when everything else, inside my brain and out in the world, doesn’t feel safe, when all of that stuff feels like a terrifying minefield. I’m grateful to have these worlds to lose myself in, even if only for a while.
When I feel like this, like I’m drowning in my depression with these near constant suicidal thoughts, things to be grateful for feel like a double edged sword. Sometimes they’re things that make me feel like I can keep hanging on, even if just for a little bit longer, and sometimes they feel like weights tied to my ankles, keeping me here when I desperately don’t want to be and I have to admit I resent them for that. So it’s anything but simple. It’s good and bad and hard and confusing; I can feel differently, ten different times in a day sometimes. But these are the objectively good things in my life and I can recognise that. I wanted to honour them for that.
Category: about me, animals, depression, exercise, family, favourites, mental health, suicide Tagged: 2022, animals, cats, depression, escapism, family, friends, grateful, gratitude, hydrotherapy, mother, mum, pets, suicidal, suicidal thoughts, swimming
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.