Posted on July 21, 2018
Over the last twelve months, I’ve barely been performing at all. I just haven’t been up to it. My depression has been completely overwhelming and has only been compounded by trying to find a new antidepressant, what with all the side effects: at one of the few gigs I have done, I was getting so dizzy that I couldn’t stand up long enough to play three songs. So it’s been a struggle. But in the last few weeks, I’ve had two gigs – and two gigs that I really wanted to do – and so I’ve had to figure out how to do everything that that involves while still struggling the way I am. It was hard work and the heat didn’t help but I managed to do them and do them reasonably well all things considered.
The first performance was part of Brighton Soup. For those of you who haven’t heard of it, it’s a community event where four people (or organisations) pitch their ideas to improve Brighton and Hove. Everyone votes and the pitch with the most votes gets the money from the ticket sales to make their idea a reality. They invited me to play at their next event and it turned out to be such a special experience. I was so moved by all of the pitches and the general spirit in the room.
I was really anxious about performing – more than I have been in a long time – and my hands were actually shaking. I find that very disconcerting, not being in control of my body. I took a deep breath and tried to imagine it flowing through my body, imagine everything settling. That helped a bit, as did trying to really feel every line of each song as I sang it.
Before this unplanned break from performing, I felt fairly confident on stage and although I did get nervous, it all but disappeared the moment I started singing. It took longer this time but, by the time I finished my four songs, I felt like myself again. I’m not sure I could explain the process – from shaking mess to confident performer – but I could feel it happening and that, in itself, helped with my anxiety.
The second performance was at Disability Pride in Brighton. I got to play last year (despite technical difficulties, it’s still one of my favourite performing experiences) and I was SO excited to get to play again. It’s such a special event.
It turned out to be a pretty challenging gig. The acoustic stage was inside an inflatable structure, which needed a generator to remain inflated. The generator was so loud that I couldn’t hear myself at all. I was reassured by multiple people that it sounded great from the audience’s perspective, but I still really struggled with it. Had this happened a year ago when I was performing fairly regularly, it wouldn’t have bothered me as much because the more you perform, the more it gets into your muscle memory. So, if you’re struggling to hear yourself, you can rely on other parts of your body to judge how the performance is going: how your voice feels in your throat, for example. But during this ‘break’ from performing, that muscle memory has faded and so I was relying heavily on hearing myself. So it wasn’t as easy as it could’ve been. Plus it was stiflingly hot and I’ve always struggled with heat.
But having said all of that, it was one of the most supportive and most generous audiences I’ve ever played for and I felt so, so lucky to be there. I wish I could’ve given them a better performance. My sincerest thanks to everyone who made the event possible; I literally can’t put into words (I’ve been staring at the computer screen for an hour) how much it means to me.
The last few weeks have been a bit of a rollercoaster, but one that I’m really grateful for. I’d sort of forgotten how much I love performing but this has really helped to remind me.
Category: anxiety, event, music, tips Tagged: anxiety, anxiety disorder, asd, autism, autism spectrum disorder, autistic, autistic adult, brighton, brighton and hove, brighton soup, disability, disability pride, disability pride brighton, gigging, music, performing, singer, singersongwriter, singing
Posted on July 14, 2018
At the beginning of the year, I set myself a handful of goals for 2018 and as we’ve just hit July, I thought it might be wise to have another look at them to see how or whether I’m achieving them. There’s been a lot of hard stuff so far, which has pretty much dominated my life so I’m not super optimistic about my progress but let’s have a look…
WRITE MORE SONGS
Technically I have done some writing so I have achieved this but I feel like I’ve achieved it in the worst way possible. I’ve been struggling so much with my concentration, my motivation, and my general cognitive ability that writing has been gruelling at best. Throw in the recent period of struggling to actually put sentences together and you can imagine that I haven’t been getting very far. It’s hard to feel good about the songs I did manage to write too. So, all in all, it’s been a bit of a mess, but I’m cautiously (VERY cautiously) optimistic about this new medication. At the very least, coming off the Venlafaxine has allowed my brain to start functioning again. It’s overwhelming at times – it feels like a firework display in my head and I’m desperately trying to look at everything before it disappears – but it’s a thousand percent better than the alternative.
Yes! Yes, yes, yes! Invisible is out! My very first single is out in the world. It’s been very surreal and weird and I thought I’d feel less stressed once I had music out in the world, but nope. Even more stressed. Anyway, I did it. I (with the help of some very awesome people) jumped the first hurdle. That’s a big deal. Now, on to the next hurdle.
FIND THE RIGHT MEDICATION
Well, I found a lot of wrong ones. That’s all I’m sure of right now. Hopefully the new one will be the right one.
BECOME MORE INDEPENDENT
This is a tricky one because I’ve been mentally (and so physically as well) worse than I have been in a really long time. So it’s not really been the right time to try and be more independent; I’ve had a hard enough time being functional at all. But having said that, there have been a few things of note. I have been slightly more adventurous with food: I’ve been trying new things, which has always been a struggle for me, so that’s progress. I also discovered the Deliveroo app (I know, I’m way behind the times), which has helped me to be less dependent on other people. I’m not sure it’s exactly the same thing as being more independent but again, it’s progress. And finally, I found an app that makes sorting cabs easier. I have been so desperately low on energy recently that I’ve been relying on my Mum and her car so having that app has made things a bit easier.
WORK ON BEING HEALTHIER
Who knows with this one… When I was taking Phenelzine (and eating badly at university), I gained a lot of weight, all of which and more I’ve lost over the last nine months or so. That, I think, has mainly been due to the nausea I’ve been experiencing as a side effect from various medications, as well as my depression affecting my appetite and will to eat. I’m aware that that’s not the healthiest way to do it but it is what it is. I wanted to get back into a rhythm at the gym and do more swimming but I just haven’t been able to; I haven’t had the energy and I haven’t felt up to being surrounded by noise and people and life. Honestly, I have no idea how this one is going to for the rest of the year. I’ve spent the last six months or so in survival mode, trying to make myself eat the bare minimum, so motivating myself to be healthier hasn’t even felt possible.
READ MORE BOOKS (MORE THAN FIVE)
I feel quite good about this one. Although I’ve really struggled with my concentration and motivation over the last six months, I have rediscovered how much I love reading, which is so, so nice. I’ve read six books so far (what?!) and now that my brain feels a bit clearer, I’m really looking forward to reading more. I even have a list!
IMPROVE MY MUSICAL SKILLS
I have made zero progress on this one. I have just been too unwell to do anything about it. Plus, after the house move, I no longer have a piano, which obviously makes practicing the piano harder…
GO THROUGH MY POSSESSIONS
As I said when I set this one, I was in the process of moving house so I was going to be forced to do this and I was. I donated at least a third of my clothes to charity, quite possibly more, and threw out a fair amount that was practically worn out. I’ve bought my own desk (the one I had was borrowed), and replaced my bed: I HATED (and had hated for a long time) the one I had and the new one is much more practical with drawers underneath for storage. So I’ve definitely achieved this one and there’s more to go: there isn’t enough space for all my stuff in my new room. Throwing away things that I’m emotionally attached to (or have been in the past) is really hard for me so it’s been a big deal but I’ve done well so far and feel good about it going forward.
So, overall, I think I could’ve done worse and, of course, there are still six months left of the year. That’s plenty of time.
Category: book, depression, food, medication, mental health, music, treatment Tagged: actuallyautistic, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, books, depression, medication, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental illness, mental illness awareness, moving house, reading, singersongwriter, songwriter, songwriting
Posted on July 7, 2018
Travelling is hard work for everybody. It’s exhausting and stressful and frustrating. But add in sensory issues or anxiety or whatever it is you struggle with and it can be a traumatic experience. Since we are now in the summer holidays and prime travelling time, I thought I’d put together some things that I found helpful to do as an autistic person who struggles with anxiety. I would like to point out (again) that there is a maddening lack of resources (and even simple testimony) for or from the point of view of autistic people. I spent hours searching for something but there was next to nothing; all the advice was for parents of young autistic children. Of course that information is important but it’s very demoralising to an autistic adult – essentially being compared to a child – especially one who was diagnosed late and has had to work so hard, often unaided, to manage their difficulties.
PLAN AHEAD – I know, this is my advice for everything, but it really does help. Struggling with unexpected change is a common trait in Autism and while planning can’t prevent all of those changes, it can make a huge difference. It can also give you a confidence boost, knowing that your actions have prevented a certain amount of anxiety.
SPEAK TO A TRAVEL AGENT – Being able to hand some of the responsibility off to someone else can be really helpful, especially if you have limited energy. You have to prioritise the tasks and if there are people who can help, that is a valuable resource. These people are also more likely to know the ins and outs of booking flights and accommodations etc and will therefore be more equipped to help you get what you need and want to get the most out of your trip.
CHOOSE YOUR ACCOMODATION CAREFULLY – Having somewhere where you can have time out and recharge is so important when travelling. We all have different sensory needs and different things we can tolerate so choosing a place to stay is really important. For example, staying with other people (people I don’t know) causes me a lot of anxiety so when we look through Airbnb, we look at places that allow us to be the sole inhabitants. It won’t be the same for everyone but if you can identify what you need, you can hopefully find somewhere to stay that can be a restful place rather than a stressful one.
WRITE A LIST OF EVERYTHING YOU’LL NEED AND HAVE SOMEONE CHECK IT – Having a list makes packing so much easier and having someone check it for you just reduces the chances of making a stupid mistake like forgetting your pyjamas. Because that really isn’t something you need to deal with when you arrive wherever you’re going. Also make sure that you’ve got any medications or medical equipment that you need because those can be particularly difficult to get hold of, especially if you’re in another country.
PACK AN EMERGENCY KIT IN YOUR CARRY ON BAGGAGE – On the off chance that your bags get lost along the way, pack a change of clothes, some medication, etc in your carry on bag so that you can at least get up the next day and work out a solution.
BRING YOUR OWN FOOD – You’d need to check with your airline but there are certain foods that you can take in your suitcase that won’t cause you any problems while travelling. That means that, at the very least, you’ll have something to eat when you get to your destination. But in my case, it gave me a staple food that I knew I could eat in case I couldn’t find anything I could tolerate. It took away some of the anxiety, for which I was grateful.
PREPARE SPECIFICALLY FOR THE FLIGHT – Apparently, we’re flying in this hypothetical. Many people have fears associated with flying and while I don’t have any magic words of wisdom there, there are a couple of tricks to make it slightly less difficult, especially if you have sensory issues. Take sweets to suck on and relieve the pressure in your ears. Wearing a mask over your face can help if you’re worried about bad reactions to everyone’s germs in one confined space, as well as chemicals from perfumes etc. I’ve also found that a playlist of familiar music helps with the constant noise of flying. And wearing comfortable clothes: you’re most likely gonna look awful when you get there anyway so why bother with anything more than a T-shirt and leggings.
BUILD IN TIME OUT AND DON’T FEEL GUILTY FOR IT – Easier said than done, I know but burning yourself out in the first couple of days doesn’t make for a good trip. So try to take breaks between things and listen to your body: if you need to rest, rest. It will make the whole trip more enjoyable and worthwhile if you do.
As of now, I think that’s all I’ve got. But if you guys have any tips that you’ve found helpful, please let me know!
Posted on June 20, 2018
A few weeks ago now, I got to perform at Autism’s Got Talent, a showcase for autistic people put on by the charity, Anna Kennedy Online. The show took place at The Mermaid Theatre in London and saw about twenty different acts perform, from music to dance to magic. It was a surprising, rewarding, and fun experience so I thought I’d write a little something about it.
I really wasn’t sure what to expect. Despite getting my diagnosis nearly three years ago, it’s only recently that I’ve started to attend events for people with Autism. It took me a long time to figure out what my diagnosis meant to me and I needed some time to find steady ground before I felt comfortable to… I guess, ‘publically identify’ as autistic, if that makes sense. So I’ve only been to a few events like this and I’ve honestly been blown away by how kind everyone is. Everyone working the show was patient and engaged and that made such a difference to the whole atmosphere; it made it a lot less stressful. As a performer, I’ve never been treated badly because of my Autism but I have felt like it’s an inconvenience, that I’m being difficult for struggling with certain things. But at this event, the things that are usually considered adjustments were already built in: there was a room specifically allocated for quiet time; the instructions and explanations were really clear; there was a meet and greet the day before (with some admin stuff) so that everyone had time to get used to everything; they had a fantastic team there to help all of the performers manage the day, all of whom only had two acts to look after; and if anyone was getting stressed, they did an excellent job of remaining calm and composed. These things made for such a supportive environment before and during the show and made the whole thing such a pleasure to be a part of.
The day of the show was a long one. We had a tour of the venue so we knew where everything was and then we got started on the sound check. Despite the long list of performers, I didn’t feel rushed at all: we were encouraged to take our time and get comfortable. Having gigged quite a lot in the last few years, I’m used to doing everything at breakneck speed (only to wait for ages for something else usually) and while I can cope with it, not having to was a real gift. I really appreciated that.
An interesting opportunity I hadn’t foreseen was the chance to be interviewed, about my experience of the show and my experience of Autism. As I’ve said, I’m still making sense of how Autism fits into my identity so that was a bit nerve-wracking, but apart from my constant fear that I’m embarrassing myself, it went okay. And it felt positive – and empowering – to talk about the way I experience the world.
Another thing that really helped was having people I knew with me. I had Richard – my cowriter, guitar player, friend, and general partner in crime – there as he was playing guitar for me but almost everyone had a family member there too and that was really nice. Again, I can cope with being by myself but having people there who know me, who know my anxieties and how to handle them, made the day much more manageable and enjoyable.
The sound check had been well organised so most of us were done by lunchtime. I ran out to do a few things and then had a couple of hours to chill and gather my energy. I definitely needed that. And then, all of sudden, it was time to get back to the theatre, take photos, and go to the green room.
I missed a lot of the first half because I had to be in the green room in preparation for getting on stage for my performance and, although I was sad to miss the performances, I got to hang out with some seriously lovely people that I hope to stay friends with. Obviously being autistic doesn’t automatically make all autistic people compatible friends but there is something pretty magical about meeting people who understand parts of you that others just don’t, naturally and without having to try (I want to write something more in-depth about autistic friends vs. non-autistic friends because I think there’s space for an interesting debate about whether it matters or not, but I did just want to point out the special-ness of having a natural connection with someone that doesn’t require either person to be anything but who they are). We laughed a lot, shared photos of our pets, and sang the Friends theme tune. As much as I love performing, I think that may be my favourite part of the experience!
When it came my turn to perform, we had a technical malfunction: the microphone didn’t work. That’s always a fun way to start a performance… It happens; it was fine. In all seriousness: I’m not fazed by performing anymore. I get nervous and restless before a show but I’ve done it enough that it doesn’t really impact my functioning or my ability to perform; I can be anxious and still handle anything thrown at me (such as equipment failure…) without falling apart. We switched out the microphone and started again. All good. The performance was so much fun (even though ‘Invisible’ is a sad song) and it was really special to play for an audience that was so genuinely supportive of the performers. If you’re reading this and you were there, you guys were wonderful! I also got to mention this blog before leaving the stage, which was cool.
In the interval, something really special happened. A number of people came up to me and told me how ‘Invisible,’ resonated with them or how they wanted to find my blog because they thought it would help someone they knew. The idea that something I’ve done – little old me – could have an impact on someone is so incredible and magical and special to me. All I want to do is create things and help people, and create things that help people. So those interactions are amazing to me. Does that make sense?
It was a really, really special show and there were some amazing performers. I’m so grateful to have had the opportunity to be a part of it. I’m still struggling with my words, as I have been for a while now, but thank you to everyone involved and everyone who came to and supported the show. It means the world to me and I know it means the world to everyone else who performed.
Posted on June 16, 2018
So this week’s adventure was having one of my wisdom teeth removed. This has been a long time coming and it’s been bothering me for almost a year but apparently it wasn’t easily accessible or something else dentist-y. So we waited. But, at my last appointment, it was deemed removable and here we are.
If you’ve read my post about seeing a specialist dentist, then you’ll understand my fears around dental work. Seeing the specialist dentist has been a lifesaver and one of the best, most helpful things to come out of getting my Autism diagnosis. And with the help of the wonderfully kind and patient staff, I finally managed to have what would probably be considered a normal check up a few weeks ago. That was a huge milestone. And so, not wanting to undo all that progress, I was scheduled to have my wisdom tooth (and a filling) done under general anaesthetic.
On Thursday of this week, I got up super early and headed to the hospital. It was actually a private hospital so everything was very smart and efficient and the whole thing was over very quickly, although I was under for three hours rather than the originally planned one. I woke up feeling remarkably okay, a bit sore but otherwise fine. After my experience with Quetiapine, waking up from a general anaesthetic was like waking up from a nap and the pain in my face wasn’t too bad. In fact, I was bothered more by the headache I’d woken up with, which I’m pretty sure was a side effect of coming off Venlafaxine (I’ve been having almost migraine level headaches a lot lately – but more on that in another post). So it wasn’t long before I was discharged and out of there.
A couple of days on and I’m not feeling great. I’m fine but it’s still painful enough that I can’t really do anything other than sleep. So I’m sleeping a lot, taking painkillers, and trying not to stress myself out. The weirdest thing has been the way my lips have been twitching ever since I woke up from the anaesthetic (kind of like when you have a jumping nerve in your eyelid – really annoying, right?). This is listed as one of the side effects in the paperwork so while I’m not panicking, it’s pretty unnerving. I’ll be relieved when that wears off – apparently it shouldn’t last more than a few weeks, although I’m obviously hoping it will be less than that.
Comparative to my last dentistry-under-general-anaesthetic experience, this one has been considerably better. The worst part last time was that they accidentally split my lip in the corner of my mouth so every time I opened my mouth for the next week or so, the cut reopened, which was very unpleasant. My Mum remembered to bring that up when we spoke to them beforehand and so they slathered me with Vaseline throughout the procedure. It was pretty gross afterwards but I’m very grateful that they did it; I’m really glad that I didn’t have to go through that again.
I’m sorry if this isn’t the most articulate blog post I’ve written. My brain has been feeling fairly scrambled recently, after all the medication changes and the general anaesthetic, and getting my words to flow has been a struggle. Hopefully that will pass soon.
Posted on May 26, 2018
The title says it all, really.
As a kid, I was always really anxious about going to the dentist. I mean, it’s a person poking around inside your mouth with sharp instruments and criticising you while you’re completely unable to respond, clench your teeth, or even swallow. If that isn’t a nightmare, I don’t know what is. It was always a traumatic experience that ended in tears. So – of course – I needed braces and in order to get braces, I had to have dental surgery to remove two teeth and attach a little chain to another to gradually pull it into it’s correct place. That was attached to the braces, which was already a painful experience in itself. It’s also worth pointing out that during that surgery, another tooth was damaged and I’ve had trouble with it ever since. I’d stress about the next appointment for months and every check up was a distressing, exhausting ordeal. So, with all of that, I was pretty anti-dentist.
The Autism diagnosis changed things: people started to understand why it was such a big deal for me and new options became available. At the time, I’d been seeing a friend of my Mum’s who was a dentist and going to her practice, just to try and get used to the whole thing. But, as she worked privately, it really wasn’t a long-term plan and I was dreading the moment we’d have to find a new person and start all over again. But when we told her about the diagnosis, she told us about a specialist dental clinic, one that deals with all sorts of disabilities, and said that she would refer me.
Going to this place was an entirely different experience for me. The dentist and dental nurse were absolutely lovely and I’ve had the two of them ever since the first appointment. It never feels rushed and in that first appointment, we spent most of it talking, some about my dental history but mostly about me: my music, my pets, and so on. I almost forgot that I was at the dentist. At the end, she spent about a minute looking at my teeth (with only the mirror and nothing pointy) and then we were done. It had been okay; I could relax.
Over the following appointments, we took baby steps. She introduced me to all the instruments and let me touch them so I knew what they’d feel like. Then she’d use them on my teeth, one by one, explaining what she was doing and giving me lots of opportunities to stop. It was such a big deal to have people listen to my anxieties and take me seriously. I was and I am so grateful to them.
It’s been slow going with many freak outs along the way. The need for a filling threw a spanner in the works because I really wasn’t ready for all of that. But the crisis was averted when they referred me for a general anaesthetic – just as well as I ended up needing a tooth removed. Obviously, general anaesthetics aren’t a long-term solution to dentist anxiety but given the progress I’d been making, we all decided that it was the right choice. And once that was over, we got back on track.
I’ve been going there for two and a half years now and my appointment last week was definitely a milestone. I let the dentist clean and polish all of my teeth all in one go; no breaks, no anaesthesia, no nothing. It was all me. That is HUGE! I haven’t been able to do that in years and apart from the three-hour nap I needed afterwards, I feel pretty good about it. It wasn’t fun but my anxiety didn’t get to an unmanageable level and I got through it; I’m really proud of that. Really, really proud.
There’s a long way left to go but it actually feels like, one day, I’ll get to a place where I can go to the dentist and have a filling and it not be that big of a deal. Imagine that?! What a thought! I am so, so grateful to my dentist and dental nurse for taking such good care of me.
Anyway, I just wanted to make this post because I know that there are a lot of people – with Autism, with mental health problems – who really struggle with going to the dentist in the same way I do, and this route isn’t a well known one. But there are options other than just forcing yourself to go. So, if the dentist is a problem for you, please talk to your dentist, your doctor, and consult google. It shouldn’t be so hard and it doesn’t have to be.
Posted on May 21, 2018
(Blog Note: I was hoping to post this yesterday but I just had to take a break from everything so it’s a day late. Sorry!)
As many of you will be aware, this last week, 14th to 20th May, was Mental Health Awareness Week and although I fully intended to have a series of mental health related posts ready to go up, life conspired against me to make that impossible. A big part of that was putting my first single out (available hereeeeeee!) so I’m not complaining but it has been stressful and taking up a lot of my brain. So my posts have been a bit all over the place – I’m working on that, I promise. But I did want to acknowledge this week because it is important.
I have seen so many social media posts this week where people have shared their stories and struggles with mental health and I’ve been blown away by each one. Sharing this stuff is such a big deal and I’m in awe of everyone who chooses to do so. This sort of stuff can make you feel like the world is shrinking around you but feeling understood opens it back up; it’s incredibly healing. I didn’t know how much I needed it until I found it. In my experience, talking about all of this has gotten easier, over time and with ‘practice,’ but it’s still hard. I still find myself hitting an invisible wall, choking on the air in my lungs, knowing that everything might change if I say the words out loud. It’s happened before. But I know that that’s the fear talking. And most of the time, I know better than the fear.
If you’ve followed me for a while, you know that I live with Autism Spectrum Disorder, Borderline Personality Disorder, Depression, Anxiety, Social Anxiety, and Obsessive Compulsive Disorder, although I wouldn’t blame you for losing track. My posts tend to jump around a lot, between different experiences and different diagnoses. Plus, things can change over time. Over the last twelve months, I’ve struggled particularly with the OCD, the anxiety, and the depression – the depression most of all. This time last year I was in a really bad place and one of the consequences of that was the decision to change my medication; it wasn’t the right thing for me anymore. Since then, I’ve been trying to find a new one without much luck; the side effects have been a rollercoaster ride and most of the time, I’m too numb to really feel any of my emotions. True, I’ve had very few meltdowns but, if meltdowns are the price of feeling things and therefore feeling like I’m actually alive, I will take them. So I’m not done with the medication search. Not yet.
I guess I’m surviving. I’m getting through. Hopefully, by next year, it will be more than that.
This week might have been about speaking out but that doesn’t mean it’s the only course of action that requires courage. Simply living with mental illness requires courage and as long as you are doing what you need to do to be safe and happy (or what will get you there), that’s all that matters.
Category: about me, depression, event, medication, mental health Tagged: anti depressants, antidepressants, anxiety, anxiety disorder, asd, autism, autism spectrum disorder, depressed, depression, medication, mental health, mental health awareness, mental health awareness week, mental health awareness week 2018, mental health blog, mental health blogger, mental health blogging, mental health week, mental illness, obsessive compulsive disorder, ocd
Hey! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as a number of mental health issues. I’m also a singer-songwriter so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.