Posted on December 1, 2018
I’m not quite sure how to describe the last few weeks. Intense, maybe. There’s been a lot going on and I’ve done things and felt things that I’ve wanted to write about but couldn’t figure out how. So I’m writing this, with the good, the bad, and the weird of the last few weeks.
So first, I got to take part in a research study for the Centre for Research in Autism and Education at University College London. I’ve written about my experience with research studies before (here) so I won’t ramble on but I love doing them. It often feels like Autism takes opportunities away from me but this allows me to do something I’d never expected and that’s really exciting. I got to put the EEG cap back on and have my brain waves monitored while I did some computer tasks. It was investigating perceptual capacity in Autism (which I’ve written more about here) and it was really fun, like a Windows computer game from the nineties. And apart from trying to get the saline gel out of my hair, it was a really great experience.
I also went and gave blood for the first time. That was very exciting! I’ve wanted to give blood for years but up until now I haven’t been well enough or I was on medication that disqualified me. So getting to do it was really exciting and a really cool experience. Everyone was really lovely and I’ve since had a text telling me where my donated blood has gone. So the whole thing was really special and I will definitely do it again.
Despite these cool and inspiring experiences, my mental health has been pretty bad: I reached a new low with my depression. I feel like I’m always saying that the current period of depression is the worst it’s ever been but for me, there are real differences: new thought patterns, new emotional states, new lines, new fears. Each period of depression has a different colour. Anyway. It’s been really bad and really hard and I’ve had some desperate moments.
Medication wise, it’s been a rollercoaster. As per usual. I got myself all but off the Amitriptyline a while ago but I just wasn’t ready to try another medication straight away. It’s a tough process and I just needed some time to feel steady, even if that was steadily bad. Maybe not the most logical decision I’ve made but it made sense to me at the time. And ultimately it doesn’t matter now. I’ve started the Clomipramine, which is what everyone wanted me to do. Finding the right medication and the right dosage can be pretty gruelling and I just needed to be in the right mental headspace. I’m not sure how I feel about the Clomipramine but it’s still early days.
And on this last Monday, I went to see Maren Morris play an amazing, intimate show at OMEARA in London. The staff were great about making it accessible and I was let in without having to queue and there was a chair reserved for me – I really, really miss the days where I could stand for hours without a problem. And the show was fantastic. Maren is one of my all time favourite artists/songwriters and it was one of the best shows I’ve ever been to.
“When this wonderful world gets heavy and I need to find my escape… yeah, I guess that’s my church.” // @marenmorris was a complete dream tonight. Beautiful, beautiful songs, singing, and stories. My little songwriter soul is so happy. (x)
It might be blurry but I love this photo of me and @richardmarcmusic after the @marenmorris show tonight. We had SUCH a good time. We’re constantly listening to her music, whether we’re in a songwriting session or just chilling out and playing Mariokart. So we were two happy beans tonight. (x)
And now it’s December. Most of my family have birthdays in December and January and of course there’s Christmas and New Year. So that’s a lot of fun things but it also means a lot of high emotion and stress. It’s a tricky time. I’ve found Christmas difficult for the last few years so I’m going to have to be careful to manage my physical and mental health throughout this period. I’m going back to the post I wrote last year about managing Christmas with anxiety and Autism – if that sounds like it might be helpful, you can find it here.
Category: depression, event, medication, mental health, music Tagged: amitriptyline, anti depressants, antidepressants, anxiety, asd, autism, autism research, autism spectrum disorder, autistic, autistic adult, blood donation, brain waves, centre for research in autism and education, christmas, clomipramine, concert, country music, crae, depression, eeg, giving blood, live music, maren morris, medication, mental health, mental illness, research study, ucl
Posted on December 24, 2017
A while back, my social media feeds were flooded with posts about being grateful and appreciative and thankful. Yes, it was Thanksgiving. I live in the UK and I find it a bit of a weird experience seeing so much celebration and festivity in my online world and have none of that reflected in the world around me. But I do think it’s important to take the time to feel grateful for what I have and I always feel especially grateful at Christmas so I thought I’d write a short post about some of the things I’m grateful for, some big, some small, and some strange.
My family, my friends, my people – This year has been a particularly difficult year but if it’s taught me anything it’s how incredible the people in my life are. Time and time again, they’ve come through for me, supported me, and encouraged me and I couldn’t be more grateful. A few years ago, my relationships felt a bit all over the place (especially my friendships: old ones were separated by university and new ones were still tentative) but this year, I feel like I’ve fallen in love again with all the lovely people in my life, from the people I talk to online to my friends (both from university and from before) to my closest family. And I’m trying my best to make sure they know it.
My therapist – My god, I’m so grateful for my therapist. Not a day goes by that I don’t think about how lucky I am to have her. I can’t even put it into words. Having someone I can trust with anything and everything is incredible (although it’s very scary for me to feel so reliant on a person). I’ve told her things I never thought I’d tell anyone and she’s helped me through things I never thought I’d get through. I can’t thank her enough for all she does.
My animals – I’ve already written about my animals so I won’t ramble on too much but they deserve a mention here. They bring me such joy and help me so much with my depression and anxiety. I’m so, so grateful to have them in my life.
My final year at university – My first two years of uni were really, really hard. They were a real struggle. I learnt a lot and I met some great people but the bad stuff going on often overwhelmed the good stuff. But third year was a blast. I loved it. I had a great group, some great tutors, and I wrote some great songs. I also built some great friendships. I think the best way to describe it was that I was finally feeling in sync, with everyone else but also with myself. I was working on all the things I wanted to work on, I was working with some awesome people, and I was getting some really good responses. It felt so right. Leaving was really hard but having such a great last year means I look back on the whole experience positively even though there were some really hard times.
My health – My health is a struggle and it’s something I wrestle with daily but I am so grateful that it’s not worse. I don’t think it’s helpful to compare your health situation to others’ because someone else’s experience doesn’t mean you aren’t allowed to feel and struggle with your own. I also think it’s unhealthy to focus solely on the positive and repress your feelings about the negatives. But I do think that it’s important to keep a sense of perspective. I’m grateful for all the things in my body that do work. I’m grateful that I do have days where I can walk the dog, go out with my friends, and stay out late. I’m grateful that my mental functioning seems to be getting better. I’m grateful for how resilient my body is. I need to learn from that.
The benefits I receive – I want to write a more in depth post about benefits and the process of getting them because it really can’t be explained sufficiently within this post but I really wanted to include this because I am so very grateful to get the benefits I do. It’s something that just removes one layer of anxiety and that’s such a big deal. I’m also really grateful for the Christmas bonus. I haven’t had a Christmas where I’ve been on benefits so far and the extra £10 with the recent payment just made me so happy.
Clear skin – My Mum laughed when I told her that I was putting this on the list but I am so, so grateful that, for the majority of the time, I have clear skin. It was something I was so insecure about as a teenager. Looking back at the photos, it doesn’t look too bad but I remember so vividly how upset I’d get over it so I’m grateful for every day I look in the mirror and see clear skin. I don’t take it for granted.
Redbull – Redbull should sponsor me. Seriously. I’m actually drinking Redbull as I write this. I only discovered it recently (I’d had to avoid caffeine while taking my previous medication) and it’s been a very exciting find, especially while I’m struggling so much with low energy levels. It gives me such a boost; it makes me feel like a normal, functional human being, not like one who has to constantly assess her energy levels and emotional state. It’s like the fog of fatigue rolls back and I can actually feel all the other emotions, like excitement and joyfulness. I’m aware that I shouldn’t drink it too often but while I’m following every other avenue to improve my energy, it’s a really good back up plan for when there’s something I need to do.
Agents of Shield – Another one that isn’t life changing but oh my god, I look forward to every new episode. I love it. It’s definitely my favourite TV show. For a long time, I avoided everything superhero-related because it just made me miss my Dad but almost ten years on, it’s something that feels really special. I can imagine the conversations we’d have, the debates over how the storylines played out. I can almost hear his voice down the phone, talking me out of a panic attack by saying, “Think of Daisy. What would Daisy Johnson do?” It used to hurt but now that world makes me feel close to him. On a different note, I love it because I find watching it makes me feel empowered. It reminds me that, superpowers or not, doing good – being a hero – is about the choices you make. It’s a weekly reminder to try to do better and to be better. Plus Chloe Bennet (who plays Daisy) is just freaking awesome. The whole cast is.
Taylor Swift – Yes, I am grateful for Taylor Swift. People have made fun of me for liking Taylor Swift for as long as I’ve been a fan but I honestly do not care. She is a fantastic songwriter and I love her music. I’m grateful to have a new album this year but the thing I’m really, really grateful for is who she is as a person. Since announcing the new album, she’s met literally hundreds of people who’ve always wanted to meet her; she’s made hundreds of people’s dreams come true, not for financial gain, not for the publicity, but because her fans matter to her as much as she matters to her fans. How lovely is that? I think that’s amazing. I’m also grateful to her for using her platform to spread awareness about sexual assault, as I am grateful to every person who has done the same. We are not obligated to share our traumas; our only obligation is to ourselves and our healing. Sharing difficult experiences and opening yourself up to the opinions of others is so brave and should never be undervalued. Her level of fame makes any potential fall out worse but it also means she made a huge impact: the RAINN hotline saw a 35% increase in the number of calls they received after she won her trial. She has so much power to affect people’s lives and she strives for that impact to be a positive one. So yeah, I’m grateful for Taylor Swift.
I could keep going – there’s a lot I’m thankful for – but I’ll stop there. I’m wishing you all a safe, happy, and healthy Christmas and I’ll see you on the other side.
Posted on December 9, 2017
Christmas and Autism aren’t hugely compatible. Lots of bright lights, noise, high emotions, family, socialising… It can all get too much. It can be a really stressful time. So I’ve been thinking about the past few Christmases and the one coming up and how I can make it restful and comfortable but also enjoyable.
Make sure you have the medication you need – To run out and go into withdrawal (depending on the kind of medication you have) is awful anyway but it’s adding insult to injury to have to go through it during a time that is characterised by its joyfulness. So make sure you know the dates your doctors/pharmacy will be closed and make sure you have the medication to get through that time. Please. If you need any extra motivation, do it for me. You do not need to go through that.
Plan presents with friends and family – I get really anxious about receiving gifts. I always worry that I’m not reacting positively enough, that I’m letting the giver down. I worry that they’ll see a microsecond of anything other than joy and that will upset them. Another anxiety about presents comes from the times when I feel really far away and disconnected from myself, something I often feel at times of high emotion. When I feel like that, something like being given a present doesn’t impact me the way it would if I didn’t feel like that and that brings it’s own myriad of emotions: guilt, frustration, loneliness, etc. I feel like I’m being ungrateful and the lack of personal connection to whatever I’ve been given makes me feel very alone, like people don’t know me. I know that it’s my head messing with me but that doesn’t make the emotions any less real. To counteract those feelings, I’ve started discussing present buying with my family and friends. Asking for things can feel really, really, REALLY awkward but if I’ve learned anything, it’s that talking things through does help. So we talk about that and we talk about what I want and what they want, the more specific the better. It does take out the surprise element but I don’t really like surprises anyway and if you have anxiety, chances are you don’t like them either. For example, for my birthday, the biggest surprise was which poetry book I got from a particular writer. It made the whole day so much easier on my emotions.
Get as much information as possible – I make a point to know what’s going on as much as possible. For me, the biggest anxiety is food so when it comes to the important meals (such as Christmas Eve and Christmas Day – the ones where my family all get together), I make sure there will be at least a couple of things I can eat. I’m lucky because my family are very used to my struggle with food so they do take that into account when planning a meal and that means a lot to me. It makes a massive difference to my Christmas experience.
Space out social events – Obviously there are some things you can’t avoid but where possible, I try and space out the socialising to give myself time to recover and recharge. And knowing in advance allows me to prepare myself, physically, mentally, and emotionally. This makes it a bit easier to regulate my mood. Some things can’t be helped but my aim is to try and keep my emotions relatively even, rather than the tumultuous up and down that they can be, which is exhausting and upsetting.
Try not to beat yourself up about negative emotions – Something I also struggle with at Christmas is this feeling that I’m not enjoying myself enough, like if I’m not ecstatic I’ve somehow failed Christmas. I’ll look around at everyone and they’re all laughing hysterically at some ridiculous Christmas dinner activity (anyone else have those differently tuned whistles that you had to blow in a particular order to play Christmas songs?) but I feel like crying. I’ve had that experience a couple of times and it’s one of the most isolating feelings I can think of. It makes me feel so alone and disconnected from everyone and it’s horrible. I haven’t figured out what to do about this feeling yet but I think the first step is acknowledging it and accepting that it’s there. My plan is to try some of the things I listed in a previous post about connecting to the world around me. I’ll report back with whether it works or not.
Accept the anti climax – I often crash after Christmas and really struggle with the anti climax. That really drags my mood down. I’m hoping that spreading out the Christmas events will soften that a little and I plan to have some fun, gentle things to do to afterwards but again, I’m trying to acknowledge and accept it. I probably won’t be as calm about it when I’m in it; I’ll probably rage against it as is my default these days but I can but try. At the end of the day, that’s all you can do.
When you can’t get out of a stressful event, create a safety net – If there’s a stressful event that I have to go to, I plan as much as possible. I’ll scout out somewhere to retreat to or bring/find a friend who can rescue me if needed. I create a safety net for myself and often it’s existence is enough. It takes off the pressure.
Take the time to think about the sad stuff if you need to – At Christmas, I can’t help but think of the people who aren’t there, who are gone for whatever reason. I miss them, not necessarily more than any other time but in a more obvious way. They are not there at Christmas dinner, there’s a glaring hole in your shopping list, and there’s no present from them on Christmas morning. I think we do a disservice to ourselves and our emotions to push that aside, because it’s a holiday about joy or because it’s too hard. But if it’s something you want to do, you have to do it in a way that works for you. Sometimes it feels right to raise a glass at dinner and sometimes it’s right just to take a few moments to think of them. Sometimes it’s right to flip through photo albums and sometimes it’s right to cry about it. Grief and sadness aren’t things you can do to someone else’s formula. But I think it’s important to take the time to remember and acknowledge the sad stuff, in whatever way you choose.
Ultimately, it’s all down to communication and planning. Planning, planning, and more planning, as always. That’s what I’m learning. I hope this has been somewhat helpful and that you guys all have the lovely, safe Christmases you deserve.
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.