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 18, 2023
I have been a fan of Amanda Tapping – Samantha Carter in Stargate SG-1, Helen Magnus in Sanctuary, actor, director, and more – for years, since I was about fifteen or sixteen (so over a decade). She’s an amazing actor, a fantastic director, a deep and creative thinker, and an incredibly generous person: for years, she did – amongst other things – annual weekend-long charity events, each one raising thousands and thousands of pounds for charity. I’ve always loved her performances, especially as these two characters, (and her commitment to the integrity of the characters) and they had a huge impact on me; even after all these years, there are moments from the shows and from the audio commentaries (that I listened to obsessively) that I see show up in my life and my creative approach. They – and she – really did change my life.
Back in 2016, I had the opportunity to meet her at her annual GABIT event, AT9. This event involved several Q&A sessions when she not only answered questions but told stories from her life and acting experiences. Attendees also got to take photos with her and get her autograph, getting little pockets of time to talk to her. Meeting her was an amazing experience, even if I was so unbelievably nervous that I could barely talk. But she was so sweet, holding my hands the whole time and just pulling me out of myself, making it a little easier. She really is the loveliest human being.
A few weeks ago, I got an email from The Companion, a website focussed on sci-fi media with this goal: “To create the most special, fun, and welcoming place where as a geek, you can be yourself and bring you closer to the creators, actors, experts… and each other. We launched The Companion in October 2020 during lockdown on this shared belief: geeks deserve a high quality home just like fans of sports, fashion, music, and other ‘premium’ genres.” Their think pieces, character and episode analyses, behind the scenes articles and so on are all really interesting and their interviews with so many people involved with these shows are always fascinating and good fun. It’s a great site, even without events like these. Back to said email…
“We’re absolutely thrilled to announce this very special event with Amanda Tapping – and all for a good cause. As one of our cherished Companion members, we wanted you to be the first in line for an opportunity to meet the legendary actor, director, and producer. Join us on June 3rd, 2023, for a live online interview with Amanda Tapping covering a subject close to her heart: mental health. Hear stories of how Stargate fandom saves lives and share some of your own. ‘As part of the sci-fi community, I’ve seen firsthand how we can all come together and support each other,’ says Amanda, ‘and I would like to extend that same compassion and understanding to issues around mental health.’“

So I love Amanda Tapping and mental health is a deeply important cause for me as well so this seemed like a gift from the universe. I bought a ticket straight away. There was also an opportunity to meet her online after the event but, as much as I would’ve liked to, I just felt like it wasn’t right for me. For one thing, it was in a groups for a short period of time and I know I wouldn’t have felt able to say anything I wanted to say with an audience. And it was just too expensive to justify, especially with that context. So I reluctantly clicked away and hoped I’d get another opportunity in the future.
We did, however, have the opportunity to share a story that would be passed on to her and I really liked that idea; it felt much less exposing, even if it did get shared during the livestream. So I wrote about how Sanctuary in particular got me through sixth form when I first started struggling with depression and anxiety; I had this fun little daydream about working on the set, working on the scripts for the show, and I probably spent more time in that world than I did in the real one (I swear, I had multiple cork boards with storylines planned out). I couldn’t have gotten through that period of my life without it, without her.
I really wasn’t sure what to expect from the livestream, how it would go, but it was highly enjoyable despite the emotional nature of it. Everyone was very thoughtful and heartfelt but still funny and ultimately hopeful. I won’t share everything because it was a unique and special experience that we all paid for but there are things that I think no one would mind if I shared because of how they could help people. And I wanted to share the experience of this livestream with someone I love and respect so much.
The first thing Amanda did, after being introduced, was lead everyone through a breathing exercise – breathe in for four, hold for four, out for four, hold for four – that she does with her daughter, Olivia, when she’s feeling “super anxious.” She clarified that she’s not an expert or anything but that she has been through “things” and that she’s maybe, as her daughter has said, a person who “feels things a little too much.” She feels it and she wants to help people who are also feeling it; that was a really nice way of putting it and it was nice to hear. She was pretty emotional from the start, telling us – and there were a lot of us, in the comments and just watching – that she was “really, really grateful that [we were] all [there].”

I hadn’t forgotten how much I love her but seeing her again and hearing her voice, I was just overwhelmed by how much she means to me, how much she’s impacted my life. And I was just so, so pleased to see her. It was just pure, overwhelming joy. And from the look on her face, she felt the same way about being there, about connecting with everyone and being ‘together’ again. It was really sweet. And the first thing she shared felt very typically Amanda: it was the analogy of how we all carry bags of rocks, bags that only grow heavier over time, and how we all need to learn how to put them down now and then, take a breath, and just be, just be a person without that burden: “We all have our burdens but I think it’s really important to take a moment and put it down and just see what it feels like to not carry it around for a minute.” We’ll always carry those burdens and they help us to help other people but we need to look after ourselves too.
There was some significant discussion about COVID, both how she’d seen it affect other people (even in the way that people are driving more aggressively) and how she felt it had affected her. She talked quite a bit about her experience – about her family, about her fears, about her losses – more so than I would’ve expected. She’d felt isolated and scared and didn’t understand what was happening and why it was still going on; she had a lot of anxiety, especially watching her daughter go to high school in a mask every day (once schools opened again). And while it was, of course, so important to wear a mask, she talked about how hard it was to breathe with a mask and face shield for fourteen hours a day on a film set, getting home and feeling oxygen deprived. “It was easy to fall into isolation,” she said, “It was easy to go down the rabbit hole as I so often do,” and it took a while for her friends to pull her out of that. It’s amazingly comforting to hear someone you so admire and respect express the same feelings as you. It made me quite emotional to hear and even more so to think about what she was really sharing with us: these really personal details of her life. I’m always so touched when people, especially people like her with public profiles, share such personal details and trust us with them; it feels like an honour, a trust that feels really sacred.
Rebecca, the livestream host, asked her what had helped her that might help others and Amanda talked about several things, all good points and interesting insights into her life:
Back to the stories for a moment. As I said, a handful of the stories submitted were shared over the course of the livestream. (Mine wasn’t one of them – I think it was probably too long and also didn’t serve as a jumping off point for more questions – but that was fine; they’re all being passed on to her so she will see it. That’s good enough for me. Apparently they were all really uplifting and just amazing examples of this fandom, that they reflect a deeply inspiring reality of how these fandoms have been so much more than just sources of entertainment for so many people: how they’ve provided solace, a sense of belonging, and even lifelines in the worst times, a description that was really moving to me.) There were lots of people saying that she and her work as various characters have saved their lives and you could see how much that meant to her. At one point, she used the word ‘verklempt’ (a word I’d never heard before but which means ‘overcome with emotion’ and you could really see that she was). One of the stories talked about fandom really well and what it means to people and Amanda was really taken with the description…

“Wow, that’s beautiful put. Holy moly. And it’s true. I don’t know if I can add to that, that’s just very beautifully articulate.”
Rebecca talked about how, in researching for the stream, she found articles about how sci-fi and how the escapism it provides can be bad for your mental health and found that very surprising. That had surprised her because she’s personally always used sci-fi to get more in touch with the world around her. Amanda completely agreed and they talked about how that idea bothered them both – that the escapism of sci-fi is a bad thing – and why. Amanda talked about how sci-fi is so often maligned and characterised as the ‘geeky’ genre; I find it so heartening to know that she’s always been able to see what it could be. She talked about how she doesn’t think you can escape too far, that being able to escape is important: we can escape into the thing and then, through the internet, we can connect with people all over the world. A lot of people just don’t get that. And following on from that, she talked about how, in her experience, the Stargate fandom is full of really nice people and the Sanctuary fans were always so generous and kind, how she constantly sees fans supporting each other, online and in real life, and how fiercely they wanted to help with her charity, Sanctuary For Kids. She said that she’s observed a special and unique generosity from sci-fi fans, perhaps because so many people feel seen by the characters and shows in this genre.

She talked about how hearing people’s stories means so much to her, how it’s had such a big impact on her. Apparently her favourite stories are the ones about what the characters mean to people and how those connections have made them feel stronger (she mimed hugging everyone, which was really cute). The number of stories like that was really moving but there were also so many stories about how people felt that Amanda herself had saved them and Rebecca asked her what that felt like. You could see how deeply that moved her – continues to move her – and she sniffed so I think it had actually moved her to tears. She could see how much Sam Carter meant to all of these people, especially young women and that felt like a huge sense of responsibility, that Carter was – and still is – this huge role model. She felt like she couldn’t let the show screw up her story so she would fight the writers on certain decisions despite not being a confrontational person. She’s talked about that a lot and it always makes me think how lucky we all were to have Amanda Tapping cast as Samantha Carter because someone else might not have pushed so hard for the character and for the audience.
The final story described Amanda as being “a light in the darkness” and she was clearly quite overwhelmed by that (something that I found both surprising and really touching, considering how often she must’ve seen messages like this over the years): “Wow, um, the only thing I can say to that is that, um, it works both ways and that, in my hours of darkness, the fandom has helped me see the light and feel okay. It’s not that you’re just helping each other, you’ve certainly helped me and I know a lot of other actors who go, ‘Oh, like, people do care and people do like us…’ And, for me, I…. It’s really important to me to connect to fans when I meet them… It’s given me a whole other world of experience. But it does, it goes both ways. It absolutely goes both ways. I’ve been lifted up out of fires more than you guys could possibly know, by your kindness and your generosity and your love.” She was visibly emotional again and I was practically weeping. It’s easy to think that we, as individuals, don’t affect her but clearly we do and that’s a lot of feeling that I’m not entirely sure what to do with.
Eventually they wrapped up the livestream and Amanda wished us all goodbye: “I love you all and it’s been a real honour to be a part of this fandom. It’s been such a huge gift in my life so thank you.” She blew us a kiss and then it was over. It was moving and thoughtful and considerate and generous and a really lovely experience. I really hope that they do do more of these conversations – Amanda said that she wants to revisit all of this, how this is just the start, just scratching the surface of a very big conversation – because it was very inspiring and I think they really could do good, even if none of us know what that looks like yet.
It was a lovely hour and I really hope that they continue to do these discussions. And seeing Amanda on my screen again, hearing her talk about all of these things that are so important to all of us, I would so love to see her again. I would have reversed my decision on the post stream meet and greet sessions on the spot. She’s visiting London for London Film and Comic Con in July and I’ve been going back and forth about going for months, even more so after the livestream. I would love to meet her again – so much has changed since the last time I saw her (not that I’d be filling her in on everything but I feel different and this me would like to meet her) – but conventions feel so scary and overwhelming, overstimulating on every level. But then I got an email that she was doing a talk too and, after a long conversation with my Mum, I’ve decided to try. There are other cool people there but I’m not going to try and take on too much, just going to Amanda’s talk and meeting her. Hopefully I will be able to handle it – the noise, the people, the anxiety – and have a good time; the tickets have been purchased and now I guess we just have to wait and see.
Category: anxiety, covid-19 pandemic, emotions, family, favourites, mental health, quotes, special interests, tips Tagged: actor, advice, amanda tapping, anxiety, at9, charity, charity work, connection, covid, covid-19, directing, director, face shield, family, fandom, friendship, gabit, helen magnus, hero, idol, lfcc, lfcc 2023, livestream, london film and comic con, martin wood, mask, masking, mental health, pandemic, pandemic 2020, role model, sam carter, samantha carter, sanctuary, sci-fi, social media, stargate sg-1, stargate sg1, the companion, tips, tv shows, zoom
Posted on May 5, 2023
Today I posted a new video on Youtube, talking about the inspiration and process behind the writing of my newest single, ‘House on Fire.’ I posted it on all of my social media accounts but I also wanted to post it here because I put so much of myself into this song. Both my initial inspiration for the song and the interpretation that has evolved over time mean so much to me and it means a lot to me to share it all in more detail. I just felt like you guys might connect with these stories, as well as the song.
If you haven’t listened to the song yet, you can find it here and I’ll be releasing more stuff soon. I hope you like the song, I hope it makes you feel something, and I hope it’s been interesting to hear the story behind the writing of the song, some of the behind the scenes of the creative process.
As always, thank you for listening to my songs, watching my videos, and reading my posts. It means more than I can say.
EDIT: You can now watch the behind the scenes of making this video, where I rambled, tripped over my own tongue, and accidentally advertised Red Bull! Enjoy! (x)
Category: anxiety, covid-19 pandemic, emotions, mental health, music, special interests, video, writing Tagged: actuallyautistic, alt pop, alternative pop, anxiety, asd, autism, autism spectrum disorder, autistic, autistic artist, autistic creative, autistic creator, conservatives, coronavirus, covid, covid-19, fear, house on fire, independent artist, independent release, indie artist, indie pop, indie release, lauren alex hooper, mental health, music, my music, new music, new music uk, new single, pandemic, pandemic 2020, politics, pop music, protest song, richard marc, richard marc music, singer, singer songwriter, singersongwriter, songwriter, the conservative party, tories, unsigned, unsigned artist

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