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 June 9, 2018
In this video, Samantha Pena talks about her experience of OCD, what it’s like to live with it, and what she’s gained. Her experience is pretty different to mine but there are definitely parts of this that I strongly relate to, especially the intensity.
Here are some quotes from the video:
- “It’s like being underwater for an extended period of time. You’re holding your breath and it’s scary. And without even thinking about it, your body naturally tells you that bad things will happen if you stay underwater. Your body tells you to fight to get out of that situation. That’s the way my body felt every time I touched something asymmetrically.”
- “OCD is Obsessive Compulsive Disorder. It’s one of many anxiety disorders and it all starts with the obsessions. The obsessions are the recurring, uncomfortable thoughts and worries that lead to the compulsions. The compulsions are in response to the obsessions, attempting to satisfy them, and it becomes a disorder when your obsessions and compulsions take up so much of your time that you are unable to move through your day ‘normally.’”
- “I avoid door handles because the cold metal sensation takes a lot for me to recuperate from.”
- “Anytime I’m itchy, I’m twice as itchy.”
- “An average day for me means avoiding thirty two different sections of lines on the ground, sixty fixes for any time anyone touches me or bumps into me, mentally preparing for a hundred and twenty four door handles, two hundred and seventy casual encounters anytime I have to touch something, and four hundred and twenty itches. In total, that’s nine hundred and six obsessive-compulsive thoughts that occur within one day. And that’s only symmetry related.”
- “I was so anxious that it hurt. It was easier to deal with my [school] binders than to live my own anxiety.”
- “I always mentally prepare for my day. I always have a plan. I even plan to plan my next plan.”
- “There is an overall understanding within me that life has a need for balance.”
- “I often hear the expression I ‘work better under pressure.’ I have OCD. I am literally always under pressure.”
Posted on June 6, 2018
I’ve been meaning to write this post for ages but the last month has been so busy that getting in writing time has been a struggle. But here we are. I’ve finally managed it!
For those of you who don’t know, one of the things The Blurt Foundation sell in their shop is a BuddyBox, a little box of things chosen to “nourish, inspire, and encourage self-care.” You can buy them as a one-off or you can buy a subscription and receive one every month. I really loved the idea and when I showed them to my Mum, she said she would buy me one as a gift. So I ordered one and then forgot about it, what with my single coming out and accidentally going into withdrawal, so I was very excited when it came through the door a few weeks ago. Opening it actually made my day and really lifted my mood, which is pretty impressive considering how low I was feeling. The title for this one was, ‘Self-Care Isn’t Sel-fish,’ so there was a definite theme going and that made me smile. This is what I found inside:
The socks were the first thing I saw when I opened the box and I was so excited. They made me smile so much. They’re so cute and they’re really soft. Excellent socks!
I haven’t tried the soap, mainly because it smells so strongly that being in the same room as it is a pretty overwhelming experience. But then I’m really sensitive so it’s not often that I can find a soap that isn’t too strong for me. Maybe one day Blurt will do a Buddy Box specifically for those of us who are super sensitive. Fortunately, many of my friends and family like this kind of soap so I’m sure I can find it a good home, someone who will really enjoy using it.
Hot Chocolate Stirring Spoon
Given that it’s been so warm recently, there haven’t been many opportunities for hot chocolate. My Mum suggested using it to make chocolate milk instead, which is a very sensible suggestion but I’m loath to use it casually. So I guess I’m saving it for a moment where I really need it. But it looks really cute and I’m excited about it.
These are super cute. The designs are simple and colourful with positive messages, affirmations like ‘I am enough’ and ‘be kind to yourself.’ I’ve got a friend who will also love these so I’m going to save them until I see her; we’ve got a date coming up and I can definitely see us eating popcorn, listening to Taylor Swift, and applying these. And possibly doing a mini photoshoot.
I really like this little booklet. It’s very short so it’s quick to read and easy to digest and I found the two pieces of writing encouraging and inspiring. I would add some concrete tips at the end thought: the concepts discussed were really good ones (like the importance of taking rest time) but putting them into action can be really hard. I think some ideas like that would be really helpful, but that’s the only I’d change.
Where Do Ideas Come From + Extra Cards
These little extras are really cute and as a person who does struggle with creative block, I’m excited about the guide to where ideas comes from!
Well, thank you Blurt for a very lovely package and for running such a lovely service. Self care is so important, so having a few things to hand is always a good idea.
Posted on June 3, 2018
Most of the time, I’m very good at taking my pills. I’ve had a few moments where a change in routine or a dramatic event has thrown off my rhythm but usually, I’m very diligent about taking my medication. We have a good relationship, even when I’m struggling with side effects: I know that I’m taking them to improve my quality of life and that knowledge helps me to push through whatever worries or difficulties that I have.
Having said all of that, I accidentally went into withdrawal a few weeks ago. A series of exceptionally busy days left me so tired that I just kept forgetting to take my meds before going to bed. As a one off, it’s not great but it’s not a huge deal. It happens and you resolve to be more careful. But with everything going on, suddenly four days had passed and I was in withdrawal.
I’d had a headache the day before, one that felt like my brain was too big for my skull and made me feel nauseous if I moved my eyes too fast. It was very unpleasant but I hadn’t thought much of it since it followed a very long, very busy day; a terrible headache after something like that isn’t uncommon for me. It’s like a hangover, but from socialising rather than alcohol. So I hadn’t been too worried but when I woke up the next morning (the fourth day without my medication), I couldn’t think properly. It’s hard to explain but it was like I couldn’t hold on to a single thought: one would appear and before I could follow it through, another ten would’ve flashed passed, leaving me confused and nauseous. I’ve never felt like we have full control over our thoughts – sometimes ideas appear out of nowhere and sometimes you can’t stop thinking about something regardless of how hard you try – but I do believe we have some control; you can choose which pathways to follow and which to leave unexplored, even if you can’t forget about it, for example. So to have absolutely no control over my mind was terrifying. I tried to keep calm and slowly collect my thoughts but I just couldn’t do it and ended up sobbing in my bed, curled up in the foetal position. It was really, really unpleasant.
My Mum called my psychiatrist and his advice was to take a normal dose straight away and then restart my normal routine that night so that’s what I did and within a couple of hours, I felt more normal. I could think again; the thought progressions had returned to their normal speed and made more sense, rather than being so chaotic and out of my control. So that was a huge improvement but I was completely exhausted by the experience. I spent the rest of the day on the sofa.
It was almost a week before I felt like myself again. I had trouble concentrating and had a tendency to zone out mid conversation; it kind of felt like I didn’t have enough brainpower to sustain one. Everything felt much more tiring.
So that’s my little cautionary tale. It’s so important to take your meds responsibly because not doing so can have pretty serious consequences. I was lucky: it was miserable but easily and quickly rectified. It could’ve been much worse. So, if you’re reading this and need to take your medication, please drop everything and take it now! This isn’t supposed to be advice for how to handle withdrawal (if you need that advice, please ask your medical professional!), more a description of the experience in the hope that it might be helpful to someone. Taking medication can be such a complicated, confusing ordeal and not talking about it only makes the process harder.
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.