Posted on January 10, 2018
The last year has been really hard.
I’ve struggled with depression for a long time now and while I knew what it meant to be hopeless, I’d never really felt it until now. And that made me realise that I hadn’t had a clue. I’m starting to think that it’s something you can’t truly understand until you’ve experienced it yourself. I don’t think I can even really describe it. It’s unlike anything I’ve ever felt and sometimes words just aren’t enough. Sometimes they aren’t big enough to fit around the feelings.
Talking about this makes me very anxious. I don’t want people thinking that I’m not grateful for the things I have because I am. I really, really am. But that’s not how it works. Depression and hopelessness have little to do with the reality of your life. Good things can be happening but, in my experience, the feeling is so strong that it can overpower everything.
So, having said that, I thought I’d share something I wrote when I felt overwhelmed by that feeling:
“And I realised that this is how life is. It’s one bad thing after another and there’s nothing I can do about it. I’m going to feel like this forever so what’s the point? What’s the fucking point in trying to be happy? That was my turning point. I felt the world shift. Everything felt really clear. I don’t know how I didn’t see it before. I don’t know why it took me so long.
I’m not sure there’s anything that can change this. So now what? I’ve been staring at that question for ten minutes and I have no idea what comes next. Moving forward is agonizing and I can’t go back. So I don’t know what to do. I’m stuck. And all the while, time is passing, so easily. It’s like water and water always finds a way to get to where it’s going. Is this drowning? Is this what drowning feels like?”
It’s so scary to feel that way. When misery is inevitable, nothing matters. Whether it’s eating, getting out of bed… Everything feels pointless. There’s a stillness, a finality to the world. I felt like I had disappeared. And while I’m not in the eye of that storm anymore, it feels like a bit of a before and after moment. My perspective has shifted, everything feels a bit different now. I’m not the same person as I was before that feeling. I still haven’t figured out how I feel about that.
One day I’ll write more about this but for now, this is all I can do.
Posted on January 7, 2018
Warning: This post will contain spoilers for Turtles All The Way Down by John Green. This is not so much a book review as it is a collection of my thoughts about a particular book so I will be talking about the characters and the storyline in some detail. Hopefully it will make sense. If you’ve read the book or don’t mind spoilers, read on but if you want to read the book (which I highly suggest you do) and watch the events unfold, go and do that first. And then maybe you can come back and read this…
As I said in my post about New Years Resolutions, I really want to get back into reading. When I was a kid, I inhaled book after book after book and I have so many memories of forgoing sleep, just so that I could finish whatever story I was in the middle of. I really loved to read. It was my favourite thing. But somehow, with university and my mental health and the rollercoaster that has been my life for the last few years, reading sort of fell off my radar and I really miss it so one of my New Years Resolutions is to try and get back into reading. I want to rediscover what I loved about it. This was the perfect book to start with, even though it hit me with a tidal wave of emotions and I’m still recovering a couple of weeks later. But I think that’s how reading is for me, at least for the moment.
From the moment I heard that John Green’s new book was about a girl with OCD, I knew I wanted to read it and knowing that he has very personal experience with OCD made me even more excited about it. I’ve read several of his books (I especially loved The Fault in Our Stars) and I’ve always really connected to the voices of the main characters. And that was what made reading Turtles All The Way Down such an emotional experience. I read it in one sitting (apart from the first chapter – I realised I was going to read it in one sitting and so I needed to plan for that). I don’t think I’ve ever related so strongly to a book, which is a really big deal since I’ve been struggling to find a book I relate to at all. I found it to be a really true, really full account of dealing with a mental health problem. I’ve always struggled to work out where OCD fits into the mosaic of my mental health so I found this book really helpful in that sense. It shifted a few things in my brain and helped me understand myself a bit better. I’m very grateful for that.
The story is narrated by sixteen-year-old Aza. She’s quiet and thoughtful, trying to manage friends, school, and planning a future, all while struggling with constant anxiety about bacteria, infection, and dying from Clostridium Difficile Infection (also known as C. diff). She describes the anxiety as ‘thought spirals’ or ‘invasive thoughts’. She feels like she has no control over her thoughts, describing them as “not a choice but a destiny,” and often the only way to control them is to check and clean a permanently open cut on her finger, proving to herself that she doesn’t have C. diff.
I love Aza and I really, really related to her, to how she thinks, how she navigates the world. I’ve always thought of my thought spirals as black holes but the descriptions match up pretty closely. And I swear, some of the things she says could’ve been pulled from my own thoughts:
- “Worrying is the correct worldview. Life is worrisome.”
- “I was so good at being a kid, and so terrible at being whatever I was now.”
- “I knew what it was like to be in a feeling, to be not just surrounded by it but also permeated by it, the way my grandmother talked about God being everywhere. When my thoughts spiralled, I was in the spiral, and of it.”
We struggle with a lot of the same things, from the littlest things to the biggest things. Like me, she struggles with her sense of identity; she talks about her “irreconcilable selves” and describes her search for her self as opening Russian dolls, looking for the final solid one but never finding it (I can definitely relate to that, although my current metaphor is a house of mirrors). Like me, she’s untidy, something that flies in the face of a huge OCD stereotype. And like me, she struggles with her body, with having a body: “I disgusted myself. I was revolting, but I couldn’t recoil from my self because I was stuck inside of it.” Finding all of these things in a character feels like such a big deal. I don’t think you can really know how important it is to have a character you relate to until you can’t find one.
The book could easily fall into the cliché of ‘girl with mental health problem meets boy and suddenly everything is better’ but fortunately, it doesn’t. I was so, so relieved. Aza and her best friend, Daisy, find themselves investigating the disappearance of Russell Pickett, the father of Aza’s childhood friend, Davis. Aza and Davis become very close very quickly but that only makes things more difficult for Aza. He means a lot to her but, as she says, the “actual mechanics of it” are really hard for her. Touching and kissing send her into a panic, a spiral that tightens and tightens. And that’s really hard for her: “I can’t have a normal life if I can’t kiss someone without freaking out.” As much as she wants to be with him, as hard as they try to make it work, her mental illness is just too much. It might sound strange but that is incredibly comforting. Despite the fact that we all know a relationship can’t magically reset your mental health, there still seem to be so many stories where that is exactly what happens. Maybe it’s because the writers want to believe that, for themselves or for someone they care about. But it’s not the truth. To know that there is one story – one more story – out in the world that demonstrates that is a relief to me. I know that my mental health prevents me from being in a relationship regardless of all other factors; seeing someone else experience the same thing helps me, even if that person is fictional. Whether it’s just for now or forever (“I don’t know if I’ll ever be able to.”), that makes me feel a little bit less alone.
The real love story is in Aza and Daisy’s friendship. I fell in love with Daisy and their friendship from the first mention. I loved that she knew when Aza was struggling and just how to help her: “She’d straightened something inside me.” I was almost giddy with excitement to find such a supportive friendship. But then they both get into relationships and they start to drift. Aza’s mental health also starts to drop. The ritual of cleaning her finger becomes less and less effective. The spirals tighten, the voice of her OCD gets stronger, and her desperation increases, leading her to drink hand sanitizer in the hope that it will prevent her from getting sick. Driving home from school one day, she and Daisy get into a vicious argument during which Daisy calls her “extremely self-centred”. I found all of this really upsetting; my stomach kept twisting, so much that it hurt. I was so attached to their friendship that seeing it crumble was really painful. It results in Aza hitting the car in front and at the hospital later that night, the feeling of being surrounded by bacteria is just too much for her and the thought spirals overwhelm her. I don’t want to go into too much detail because you should really just read it. It’s so well written and I related to it so strongly.
After that, Aza has to spend a lot of time and energy on recovering from that. It’s scary and difficult and she feels very fragile but slowly, things do change. She and Daisy rebuild their friendship and while it’s so similar, it’s also very different to how it was before. They talk and they talk properly; those conversations are some of the best in the book.
But as wonderful as that is, it doesn’t solve Aza’s struggles. “Everyone wanted me to feed them that story – darkness to light, weakness to strength, broken to whole. I wanted it too.” She still has thought spirals; she’s still so terrified that she can barely talk about it. Her life – and her future – feel suffocated by her anxiety: “I could never become a functioning grown up like this; it was inconceivable that I’d ever have a career.” This process feels so real to me. I’ve hit breaking point after breaking point and I always expect to feel better, or lightened, afterwards but then all the problems are still there and that can feel devastating. Accepting the reality of her mental health is one of the biggest and most difficult struggles: “I would always be like this, always have this within me. There was no beating it. I would never slay the dragon, because the dragon was also me. My self and the disease were knotted together for life.” But, despite all of that, you can see the evolution in her thinking. She manages to say yes to things that scare her, she has good days, and her relationships get stronger. It’s subtle but her self worth improves too: “You’re the storyteller and the story told. You are somebody’s something, but you are also your you.” That is so much more important than if she’d made massive strides because it’s so real. That progress is slow and subtle and sometimes we don’t even see it happening. But when it’s written out on paper, you can see it and it’s a really good reminder that it’s there. It gives me hope.
Her relationship with her Mum is another thing I really liked in the book. They have a close relationship (“I could always feel my mother’s vibrating strings.”) and she’s a good mother but she says the wrong things sometimes and her concern can just feel like another layer of pressure for Aza. Over the course of the story, they get better at communicating and she learns what helps and what doesn’t, and Aza gets better at telling her. That’s such an important process and I think it sets a really good example: mental health problems can be really hard to understand, on all sides, and we don’t always get it right. Getting it wrong doesn’t make you a bad person; you just have to learn from the mistakes. And communicate. Towards the end, they have a really important conversation where Aza says, “I can’t stay sane for you…” and I really want to highlight that moment. I had a very similar conversation with my Mum. I think that people in our lives ask us to do things for them, thinking that they’re helping you, motivating you, giving you something to live for, when in fact they’re just adding more pressure to an already difficult situation. It’s not their fault – they’re just trying to help – but it can make things worse and they won’t know that unless it’s explained to them. So I think that was really good to have in this book.
Something else I related to was the fact that Aza’s father died several years earlier. When it comes to the events in the story, it’s not particularly relevant but at the same time, it’s very relevant (bear with me). It’s a massive part of who Aza is (it’s interesting that, from an outside perspective, we have a stronger sense of her identity than she does). She keeps her Dad close, driving his car, holding onto his phone to look through his pictures, talking to him… “I thought about how everyone always seemed slightly uncomfortable when discussing their fathers in front of me. They always seemed worried I’d be reminded of my fatherlessness, as if I could somehow forget.” My god, I relate to that. I can’t forget, not for a second. It’s painful but at the same time, I treasure it. I don’t want to forget. It’s part of who I am: “To be alive is to be missing.” It’s one of those before and after moments in your life; it changes you. It was comforting to see my experience (“And the thing is, when you lose someone, you realize you’ll eventually lose everyone.”) reflected back to me in someone else. As I’ve already said, it means so much to me to find a character I relate to so strongly. It makes me feel less alone. It makes me feel more real. “I remember after my Dad died, for a while, it was both true and not true in my mind… My father died suddenly, but also across the years. He was still dying really – which meant, I guess, that he was still living too.” Words like these are such a comfort to me. Aza imagines the moments they should’ve – or could’ve – had and they’re so clear that sometimes she forgets they didn’t happen. I can definitely relate to that.
Something I love about John Green’s writing is how he brings attention to things that are often overlooked or taken for granted: “It’s a weird phrase in English, in love, like it’s a sea you drown in or a town you live in. You don’t get to be in anything else – in friendship or in anger or in hope. All you can be in is love.” He weaves little things – or the little links between little things – into his stories that make the world more intricate, more real. The characters talk about the stars and Kurt Gödel. They have revelations about turtles and intersecting tree branches. Those things, for me at least, mean as much to me as they do to the characters. I mean, I am a space nerd and at least seventy percent of my thoughts are about metaphors but these things, these connections create so many layers to the story. As Aza says, “The world is also the stories we tell about it.”
After seeing what a huge impact this book had on me, my Mum read it, also in the space of a couple of days:
This story has also given me so much. It has helped me to better understand the feelings and anxieties my daughter lives with, and more importantly, another context to talk with her about them. (After reading this I realised that all the quotes she has chosen to include, are ones I have found particularly helpful too). I feel indebted to John Green for this story, for the hope I see it bring to her, and hopefully others too, for the understanding it can give parents and others supporting those with mental health issues, and for giving her a reason to read again. The way he closes the story also give me hope, for the future I wish for her.
It surprised me, how much she loved the ending since I’m still not sure how I feel about it. But I’m so glad she loved the book and that she got so much out of it.
This book means so much to me and I’m really glad it’s the book I chose to get back into reading. It’s definitely one that I’ll hang on to, carry around… It was always have a place on my bookshelf. There’s so much in it, multiple storylines that blend into each other. There’s elements of mystery, elements of romance, family and friendship, identity, loss… And it shows how everything affects everything else. The language is beautiful and brutal and real. I related to so much of it and it put so many of my thoughts into words. I love how he describes everything: he uses phrases like ‘swimming up from the depths’ and ‘sensorial planes’ when talking about thoughts spirals which is just so true, in my experience at least. There will be criticisms – there always are – but this is the book I needed exactly when I needed it and I will always love it for that.
There is so much more I could say – there’s so much I haven’t even mentioned – but I’ll stop there. So I’ll leave you with a quote from Aza’s therapist, who reminds me a lot of my own therapist. She says a lot of good and important things throughout the book but this is my favourite, and my favourite of the book:
“In some ways, pain is the opposite of language… And we’re such language based creatures that to some extent we cannot know what we cannot name. And so we assume it isn’t real. We refer to it with catch-all terms, like crazy or chronic pain, terms that both ostracize and minimize. The term chronic pain captures nothing of the grinding, constant, ceaseless, inescapable hurt. And the term crazy arrives at us with none of the terror and worry you live with. Nor do either of those terms connote the courage people in such pains exemplify.”
“It often dwells in cliche, but only as pop songs and epic poems do, mining the universal to create something that speaks to the familiar rhythms of the heart. At one point Aza thinks about how the string from one musical instrument can cause the string of another to vibrate, if it’s the same note. That’s what this novel does. It will pluck the strings of those in tune with it. It will resonate with, and comfort, anxious young minds everywhere. It might just be a new modern classic.” – Matt Haig, excerpt from his review of Turtles All The Way Down for The Guardian (x)
Posted on January 1, 2018
I’ve been thinking a lot about whether or not to have resolutions. In this particular phase of my life, everything seems so uncertain, both in terms of my mental health and my life post university. I have no idea where I’m going to be in a month so it seems reductionist to start imposing constraints. I don’t really like the expectations around them but I do like the concept, the decision to move forward with better habits. So I’m trying to think of some habits I want to foster and some goals, all which should be achievable, that I’d like to work toward in 2018.
WRITE MORE SONGS – While I was still at university, I was writing a lot of songs, which was awesome, but I haven’t been writing nearly as much since I left. That has mainly been due to a suffocating bout of depression and then the medication-induced rollercoaster that I’ve been riding to try and get out of it. I want to get to a place where my mental health becomes more stable and conducive to writing and then, hopefully, it will be all systems go.
RELEASE MUSIC – This was a goal for last year and it almost happened but the whole process has just taken longer than I’d hoped. But it’s still on track so hopefully my first single will be out soon. That feels like a real milestone that I’m so, so excited for.
FIND THE RIGHT MEDICATION – I’ve already kind of mentioned this but I want to reach a place where my mental health is relatively stable and to get there, I need to get my medication right. The Venlafaxine has been better than nothing but I’m not convinced by it. I feel like I should be feeling better by now, better than I am. It’s been a FREAKING LONG journey already, which will be worth it when we find the right drug or the right dosage or whatever. But while it’s on going, it’s really wearing me down. It’s easy to think that I should’ve stayed on the Phenelzine but I know it wasn’t really helping me by the end. So, yeah, I want to get to a reasonably good place in the next few months.
WORK ON BEING HEALTHIER – This is vague but it’s such a process and I figure that, as long as I’m trying, I’m achieving this goal. I want to work on drinking more water, swimming more, and so on. I was just starting to get into a really good routine when my mental health took a nosedive and suddenly it was all I could do to get through the day. I’m not sure I’m back to the level of being able to go to the gym but I do feel capable of starting the small changes, like drinking more water. Hopefully, as my mental health improves (as it is starting to, if very slowly) I can work on this more. I’m also aware that my relationship with food isn’t very healthy – again, another casualty of my mental health problems. So I’m throwing that in there too.
BECOME MORE INDEPENDENT – This is something I want to write more about in relation to Autism because it’s really important. For some people, Autism makes is really difficult to be independent and that can be a hard thing to get your head around. I’m constantly beating myself up for not having moved out like all my friends, for not having learnt how to drive, for not having a job. But the cold, hard truth is that, at this moment in time, my Autism does not allow me to be independent. With the meltdowns, fatigue, getting overwhelmed by sensory information, getting overwhelmed by emotions, executive functioning struggles, and so on and so on and so on, it’s just not possible. This goal is deliberately vague because it depends hugely on my mental health and what I feel up to doing (and because I’ve only just really started thinking about it) but by the end of this year, I want to be a bit more independent. That’s a journey that I will definitely document.
READ MORE BOOKS – I cannot remember the last time I read a book (that wasn’t for college/university). I think a big part of that comes from my mental health struggles. My concentration has been absolutely terrible so I haven’t really felt able to get into a book but I’ve also felt quite alienated by the books I’ve tried to read. So, so many books are about relationships, about finding ‘the one’ (this seems to be especially true of the Young Adult genre – even when the main storyline is about something different – which is what I was searching through when I last tried to find something to read), and I’m just not interested in that. I don’t want my whole life to revolve around my mental illness but as for my life right now, it really does. That’s fine; it won’t be like that forever. But that means that, right now, I want to read about people like me, people struggling with their mental health, and I just haven’t been able to find much that I connect to. It’s an on going struggle. If you have any suggestions, let me know! This year, provided that my concentration improves as I get my medication right, I want to finish five books. That’s a low goal but I’d rather set a low goal and achieve it than struggle with feeling pressured. I am now part of a book club with my friends and although I haven’t yet been available to go, I’m hoping that that will help with this goal.
IMPROVE MY MUSICAL SKILLS – This is another one from last year, which was again derailed by my mental health. Having no energy and no motivation is a horrible place to be. So my hope is that that will improve (it already has a bit) as well as my concentration and then I will be able to get back to guitar and piano lessons and really improve those skills.
GO THROUGH MY POSSESSIONS – This sounds like a massive job but as I’m moving house this year, I’m going to have to pack everything anyway. I might as well go through it all at the same time. I do really struggle to throw/give things away – I probably fit at least some of the criteria for hoarding disorder – but I’ve been working on this and it feels like the right time. A clean slate and all that.
I’m a big fan of the idea that you can start fresh everyday, or even within days, but I think New Year is a good excuse to get some perspective and create a sense of purpose for yourself. I don’t think New Years Resolutions are useful when they cause anxiety but if you can use them to empower you, I think they can be really helpful. I guess we’ll see how well I do.
2018, I’ll make you a deal: you do your best and I’ll do the same.
Posted on December 31, 2017
It’s become a bit of a tradition for me to summarise the year on Instagram with a collage of photos and a sappy caption but since I have the blog this year, I thought I’d write something a bit more in depth (although I will still do my Instagram, fear not). I want to collect my thoughts and take a look at what I loved and lost and learned.
This has been a hard year, mainly because of my mental health. I struggled with my medication for a long time before having the worst meltdown I’ve ever had and that was the trigger for a really bad bout of depression that I still haven’t really recovered from. It’s not as bad as it was but it’s been really hard. Because of that, I decided to change medications and that process has swallowed up most of the year. Honestly, that’s been awful. I’ve been in a really bad mental place, it’s made me physically unwell, and probably the worst part is that it’s affected my cognitive functioning, making me unable to write. That has been unbearable. But it hasn’t been all bad, mental health wise. I confronted someone who really hurt me, I got involved with research studies into Autism, I applied to ‘Behind The Scars’ and talked openly about my experiences with self harm. I somehow got over my paralyzing anxiety about moving house and I’ve started communicating more with my family. So while it’s been a really difficult time, I can see that I have made some significant strides this year.
Another big thing was graduating university. I had always wanted to graduate with First Class Honours and while I expected it of myself, I still can’t quite believe that I managed it. I want to write something much more in depth about my experience at uni because there were a lot of ups and downs but ultimately, it was a great experience and I’m really proud of everything I achieved there. I also made some amazing friends who I will hopefully have in my life forever. The UEL graduation was stressful and exhausting but the ICMP graduation was satisfying and fun. And going out afterwards was a bizarre experience but I was proud of myself for defying my anxiety. My only regret about finishing uni and then graduating is that my depression overwhelmed them: when I found out I’d got a First, I didn’t feel anything. I wanted to be ecstatic but I couldn’t feel it. And yet, I would’ve been devastated had I not got a First. I’m trying to accept that situation for all it was though; I can’t change it now.
And then, of course, there is the music. This was obviously massively affected by my mental health but there were still some great moments this year. I wrote my most important song so far and I’ve been working on its release ever since (fingers crossed for early 2018) and that is so amazing to me. I’m so excited for it. I’ve also had some really fun recording sessions and I’ve had some awesome performing experiences: I got to play a songwriters’ circle with Lauren Aquilina, I hosted another songwriters’ circle at my friend’s charity benefit for TWLOHA, I played a showcase for a record label, and I got to play for my local Autism charity, Amaze. I mean, how cool is that? I also had another really special trip to Nashville. And last but certainly not least, I’ve been to some incredible concerts this year, including: The Shires, Sasha, East of Eli and Chyler Leigh, Country2Country, Tin Pan South Festival, Willemijn Verkaik, Kelsea Ballerini, Lady Antebellum, NADINE, and Maren Morris. Concerts are so, so important to me. Those are the moments where I really feel alive and so I always keep money aside for when they come around. They’re the only thing that I really spend money on.
I’m not sure whether it’s even possible to classify this year as a good one or a bad one. It would be easy to file it away as a bad year because of the difficult mental health stuff but there have been a lot of amazing moments. I went back to my two favourite places in the world, I listened to great music and saw some incredible art pieces, I saw my kittens all grown up, and I had some amazing experiences with the lovely people I’m so lucky to call my friends. I even started drinking alcohol for the first time; that’s been an experience! Thus far, I don’t really like it but I’m really, really, REALLY enjoying not feeling controlled by my anxiety, at least not in that area of my life.
Overall, this year has been a year of waiting. It really has: waiting for the medication to work, waiting to feel better, waiting to release my first single, waiting to move, waiting to graduate… Even when I was still at uni, I was counting down the days until we finished (because I didn’t want to leave and I was stressed about getting everything done in time). Always, always waiting. This year has been measured in seconds, minutes, hours, days, rather than experiences, far more than any other year. So that’s my hope for the new year: to wait less and do more. I know that many of these things were out of my control and when there were things I could influence, I did my best to do so. And I did some pretty cool stuff while I was waiting for other things. But I really want next year to feel different. I can’t remove waiting from my life but I’d like to not feel so stuck when I do have to wait.
“2017 was the year of waiting: waiting to release music, waiting to move house, waiting for medication to start working, waiting to feel better. It’s been slow and painful so I’m grateful to be moving on. But there have been some great moments this year too. I wrote some songs I’m really proud of, saw some amazing concerts, and went back to Nashville. I tried to see my friends as much as possible and worked hard on my mental health. Hopefully I’ll start to see some of that work pay off in 2018.” (x)
Posted on December 29, 2017
I meant to post this yesterday, which actually was the 100th day, but then I managed to break my memory stick, where the file was saved. So that threw a spanner in the works. But here we are. The files were recovered. No harm done.
I’ve been taking Venlafaxine for 100 days now so I thought it was time I compiled my notes and summed up the whole thing. I know that when I started taking it, it would’ve been really helpful to know about someone’s experience. My psychiatrist gave me all the medical information but that didn’t really prepare me for what it felt like. So if you’re about to start taking Venlafaxine or are thinking about it, maybe this will help you. And if not, maybe this will give you a little insight into one experience of taking medication for a mental illness.
Week 1 (Dose: 37.5mg)
The nausea was so strong that all I could think about was not throwing up. I was very dizzy and tired all the time. But it was much easier to wake up in the mornings, quickly rather than having to drag myself into consciousness.
The nausea faded a bit. I had headaches and was exhausted all the time. I continued to wake up early.
Week 3 (Dose: 75mg)
I was so tired that I fell asleep at random but I was still waking up early. I felt very faint and was too shaky to do anything but I had no concentration so I couldn’t do much anyway.
The week was overshadowed by severe, unexplained leg pain. I had several doctors’ appointments to rule out the medication and DVT, the next most likely explanation, but eventually it faded by itself. Aside from that, I felt a bit lighter emotionally.
I had some leg pain but it faded much more quickly. I was exhausted and very sleepy, regardless of how much sleep I got.
I was so very, very tired, so tired that I could barely do anything. But I was still waking up very early.
Again, still very, very tired but I was also feeling very anxious and depressed. I also noticed lots of bruising, especially on my legs that didn’t seem to have a cause. All I had to do was lean on something hard, like the edge of a table, and I’d have a bruise.
Week 8 (Dose: 150mg)
A bad week. I felt very disconnected and depressed. I was also exhausted so I didn’t have the energy to do any of the things that can help. I was also pretty unwell for a couple of days but I don’t know if that was related or just a coincidence.
I started struggling desperately to wake up. It was like being trapped between being awake and asleep. It took all my concentration to wake up but all I had to do was blink and all that effort is wasted and I have to start all over again. I was exhausted and sleepy all the time.
I was struggling desperately to wake up and still exhausted and sleepy all day.
I reduced the Quetiapine from 125mg to 100mg (which I was prescribed while taking Phenelzine to help me sleep – I’d wanted to come off it straight away but was advised to wait so that I wasn’t dealing with reactions from both medications), which made waking up easier but I was still exhausted, depressed, and without any motivation.
The sleepiness started to creep back in and I was still exhausted and without motivation.
Again, I was really struggling to wake up; I couldn’t stay awake but I also couldn’t get back to sleep either. I managed to get the Quetiapine down to 50mg but I wasn’t sure if it was helping or not. I still had very little concentration and motivation which was really difficult and upsetting.
Week 14 (Dose: 225mg)
To combat the sleepiness, I reduced the Quetiapine to 25mg so my sleep was very all over the place. I was waking up really early and not getting more than about six hours. But I did feel more awake and alert which was a relief. I had several really productive days and wrote two songs after not being able to write for more than six months. That gave me an evening of complete joy, something I can’t remember feeling. Unfortunately that only lasted one night and my mood dipped afterwards because I missed it so much.
My mood was fairly stable, no major ups or downs. I wasn’t depressed but I wasn’t feeling that positive either. I was tired and sleepy and feeling a bit lost.
I just wanted to draw particular attention to how long this process can take. When I started my last medication, I felt better very quickly but it’s been a very different story this time. It’s not as simple as taking the pills and feeling better. There’s the time it takes to decide or justify that you need a new medication (or a first medication), the time it takes to come off the old one, the time it takes to build up and adjust to the new one… I started this process in May and it’s now December. Seven months and I still don’t feel that much better. I’m hanging on to hope that things will start to get better – I’m holding on to that one really good day – but it’s hard.
I think there is a lack of understanding when it comes to this stuff. From the outside, it can seem like you’re not doing anything to get better and there’s a lot of guilt attached that, from other people and from yourself. But on top of whatever mental health problem you’re dealing with, there’s adjusting to the medication and whatever side effects come with it. That’s a lot. It’s exhausting physically, mentally, and emotionally and you shouldn’t feel pressured to do things you feel unable to or feel guilty about whatever you need to do to get through it. I’m still trying to learn this. I constantly feel like I’m not trying hard enough, even when I’m so exhausted that I don’t think I can get out of bed. But that’s a topic for another day.
I hope you all had a lovely Christmas and I’ll see you in the next post.
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 20, 2017
Last week I got to take part in another Autism research study. I’ve done a couple of these before but that was before I was writing this blog and I just haven’t got around to writing them up. So far I’ve done two at Kent University; the second one involved seeing my brain waves, which was really cool (although the saline gel that made it easier to pick up my brain waves was not cool – it was gross). This one was at Sussex University and focussed on how people see, process, and remember colour. I was really excited about it since I seem to be very sensitive and responsive to colour. And even though I’ve been really struggling with my energy, I had a really good time.
I was there for about three hours. To begin with, I did a couple of tasks to assess my colour vision and a couple of Autism questionnaires. And later on I did an IQ test. These tasks aren’t used for a clinical evaluation but to provide quantitative scores so that you can compare all the data in the study. This makes the research more reliable because you’re not, for example, comparing two people with vastly different abilities. I’m not massively into IQ tests as an idea – my Psychology teacher used to say that the only thing a high IQ proves is that you’re good at IQ tests – but I did get a great deal of satisfaction out of completing one of the tasks that I’ve previously never been able to do.
The main part of the session was devoted to several different tasks involving colour. One had me putting names to different coloured squares of card, another involved manipulating the colours in various images to turn them grey, and a third required me to repeatedly choose which of two squares was bluer. When we were done, all of these tests were explained to me, what each one showed and how they would draw their conclusions. Had I not fallen in love with songwriting, I probably would’ve done Psychology at university and it’s something that I’ve really missed so I geeked out over it. It was really fun.
I get so much out of doing these research studies. It feels so good to use my Autism for something positive when most of the time, it’s something that I struggle against. I’m still wrestling with how that discovery has changed my life so to be able to channel it into something that will help people helps me. The other reason I like doing these is because all that’s required of me is to be myself as an Autistic person. I don’t have to moderate my behaviour, consciously or unconsciously, and that is so freeing. It’s also kind of empowering: it reminds me that I’m a productive person who can contribute, that I’m not less because I’m Autistic, that I can do good. It’s easy to forget that when you’re struggling with something overwhelming.
So it was a good day. I definitely recommend getting involved with these sorts of projects if you can. I often hear about them through my local Autism charities so search out the ones near your location if you’re interested!