Posted on May 18, 2018
Ever since I started this blog, it’s been on my list to write something about the TV show, Thirteen Reasons Why. I’d intended to write something really in depth but time got away from me and now the new season is coming out. And frankly, it’s been done. But with the new season being released, I want to write down some of my thoughts before new storylines and new characters stir all those emotions up again.
There has been a lot of controversy around this show. It’s been criticised for failing to mention mental health and how that likely influenced Hannah’s actions, and most common are the complaints about its graphic depiction of Hannah’s suicide and how it could incite others to do the same. These are all valid points and things that I wish the show had handled better but I don’t want to get too far down that rabbit hole here; as I said, that’s been done and done much more eloquently than I could do it (some examples here and here). But I want to say this: seeing stuff that I struggle with, seeing it out in the world and outside my own head, really helped me. Yes, I found the suicide scene (and many others) distressing and, to a certain extent, triggering but it’s not that simple: I remember watching it for the first time and feeling completely overwhelmed by so many emotions that it took a lot of thinking to untangle them. But it was ultimately a positive experience for me because it made me feel understood. Our stories are different but what Hannah was feeling really resonated with me, like we were on the same frequency. I’m not suicidal (although I have dealt with suicidal thoughts at various times) but I can understand the intensity of the emotions that lead Hannah to that decision and seeing those emotions depicted was a clear sign that I wasn’t alone in that. That was hugely important for me.
I also want to say that it was kind of a relief to me, to see suicide shown so starkly, with no weird camera angles to hide the violence of it. There is so much stigma around admitting that you feel suicidal or that you’re dealing with suicidal thoughts so to have that taboo broken so forcefully felt almost like an opportunity for a fresh start. I’m talking more emotionally than anything else, and only for myself. This is such a complicated, personal issue that I would never want to speak for anyone else. But for me, the more people don’t talk about something like this, the more the pressure builds and the more difficult it is to talk about it. For completely understandable reasons, the reaction is dramatic if you bring up something like this but what if we could discuss it without that pressure? With the respect it’s due of course, but without the pressure. Wouldn’t that be better? Obviously that is too much to put on one TV show but it’s something to aspire to. I’m not claiming to know how to get there or suggesting that this show be the blueprint but for me, it helped with my processing of this incredibly complicated emotional issue. Again, I am only speaking to my emotional reaction to the show. If you felt differently, that is absolutely valid. We’re all in different places and react to things differently; what feels okay for me may not be for you and vice versa. I’m just putting my experience out there.
I could ramble on because I have a lot of feelings about this show and there are a lot of layers to those feelings but I’ll stop there. It’s got its problems, of course, but it made me feel less alone with my mental health and that is something I’ve never had from a film or TV show before. So above all else, I’m grateful for that.
Now, to watch Season 2.
(Blog Note: I’m sorry the posting schedule has been all over the place. As you guys know, my life has been pretty hectic recently but I’m hoping to get back to posting more regularly next week…)
Posted on May 18, 2018
About half way through April, I discovered that The Blurt Foundation were running a campaign all about self care on social media, encouraging people to be kind to themselves with a series of prompts. Then, if you wanted to, you could post a photo of what you did under the hashtag, ‘#blurtselfcareathon.’ I scrolled through and came away really inspired; with all the stress in my life recently, I could definitely benefit from some self care.
‘Self care’ is a phrase that has many people rolling their eyes at the moment. It’s become associated with brands encouraging you to buy luxurious bath products and with Instagram photos of cosy days under a duvet, ignoring all responsibility. And yes, taking time out from your life can be a form of self care but it’s often not that quaint. It can be clearing out all the glasses that have accumulated next to your bed, forcing yourself to eat enough even when it’s the last thing you want to do, or dragging yourself to the shower to get cleaned up. It can be going through your receipts so you know how much money you have left in your budget for the week, or counting out the pills you have left so you don’t run out at a crucial moment. Self care grew from minority groups taking ownership of their health, when society dismissed their concerns. We aren’t helpless when it comes to improving our wellbeing and whether you do that by taking a day off to escape and binge watch a TV show or by researching and reaching out to alternative practitioners because you feel your health isn’t being taken seriously enough, it’s an important point to remember.
Although I didn’t complete the challenge in the traditional sense, I thought I’d share a couple of the prompts and what I ended up doing, whether I posted about it or not:
“I’ve only just discovered @theblurtfoundation’s #blurtselfcareathon; I’m very late but I’m so excited to join in. The prompt for today is ‘letter’ so here is me, saying goodbye to my childhood bedroom on Tuesday morning: I left a letter I’d written under a loose floorboard for a future resident of the room, asking them to look after it for me. Saying goodbye was really, really hard, but doing this helped a little bit.”
If anything falls under self care, it’s this. This was something I did purely to help me get through a really stressful time. I definitely want to write more about this in it’s own right but it’s definitely relevant here.
“My new room doesn’t feel like mine yet and I don’t think it will for a while but today I took the first step toward turning it into a safe space for myself. Blue walls and cream carpet to remind me of the beaches I grew up on. There’s a lot left to do but it’s felt really good to start. // Small Steps – Day 22 of @theblurtfoundation’s #blurtselfcareathon.”
For the first time in a while, I picked up my guitar and it felt really good.
I didn’t end up posting this as part of the challenge for whatever reason but I think it counts. My therapist and I have taken to celebrating big milestones with cake, specifically from Lola’s Cupcakes (they make the most amazing cupcakes): this one was for three years in therapy. It feels like a lifetime and no time at all. We’ve worked through some really hard moments and started to explore things that I never thought I’d say out loud. That’s a huge deal. My therapist is incredible and I’m more grateful to her than I could ever say.
Over the past few weeks, I’ve been to several gigs (pictured: Megan O’Neill and The Shires) and they’ve all been really cool in their own ways. Live music gives me a boost unlike anything else. It reminds me of my dreams; it helps to refocus me; it makes me feel alive.
There was a prompt specifically dedicated to animals but I couldn’t resist including the kittens in more than one post. I see them everyday after all. And pretty much every moment I spend with them is self care; they have an instant calming effect on me.
This was definitely a positive experience, trying to work the prompts into each day. Self care is something that’s so personal and so we have to figure out what works for each of us. As I said earlier on, it isn’t always pretty or glamorous but taking care of yourself doesn’t have to be a chore. Something like this is a good reminder to try different things, fun things, things that fly in the face of conventional advice. Hopefully you’ll find something that helps but the act of searching is also an empowering one: choosing positive steps is healing.
Posted on May 16, 2018
I can’t quite believe that I’m actually posting this but dreams do sometimes come true and my first single is out now! It’s called ‘Invisible,’ and it’s all about my experience with mental health, with trying to get support. I felt like I was drowning and yet the people who were supposed to help me couldn’t see it; I felt invisible. And that’s where this song came from. I wrote it with one of my best friends, Richard Sanderson, and now that it’s out in the world, all the proceeds are going to Young Minds, the mental health charity for young people in the UK. So please go and buy/stream/share it. I hope it will mean as much to you guys as it does to me.
There’s more to say and more content to come, stuff that I’m really excited about, but I just wanted to announce that it’s out! This song, and this project, means so much to me and I’m both excited and scared to see where it goes. Please check it out; you can find it here.
Posted on May 11, 2018
Every few days, I’ll be scrolling through one social media or another and I’ll see a post baldly stating, ‘Don’t let your mental illness define you!’ or ‘You are more than your mental illness!’ These have always irritated me but I didn’t really stop to investigate why. But I’ve been thinking a lot about identity recently, both in the personal sense and the abstract, and I think I’m starting to make sense of it.
As a person, I can be a bit perverse. If someone tells me I can’t do something, I instantly feel compelled to prove them wrong. And so, when these posts tell me that I am not defined by my mental illness, a part of me starts yelling, “But I am defined by my mental illness!” Childish, I know, but true. The thing is that I don’t necessarily think that that is a bad thing. Of course I’m defined by my mental health problems: they take up significant time and effort and emotion. Why wouldn’t I feel defined by something like that? It has defined me, it has shaped me in the same way that any big part of my life has, like my love for songwriting has, like my love and loyalty to my friends and family has. Anything that has caused significant emotion in me, whether it be good or bad, has become a part of me and sometimes those parts are big parts.
But an important thing to remember, I think, is that our identities are constantly shifting and changing. What defines us now won’t necessarily define us in the future. With everything that happens to us, our lives get bigger and grow around the old parts, the same way the roots of trees grow around any obstacle they find in their path. Right now, my mental health overwhelms pretty much everything but that may not always be the case. The medication might start to work, helping me to manage the symptoms, or something bigger might happen in my life. The point is things change.
On the other hand, I could choose it, choose to make mental health a ‘defining’ part of my life. I could choose to turn it into something, to use my experience. And I think that that is something I need to do. I don’t think I can ignore what is such a significant part of my life or view it as something to just get past. That feels disrespectful to the amount of time and effort and emotion that I – and the people in my life – have had to put into this. If life is about the journey rather than the destination, then this is an important part of the journey and, like every significant moment, I will be adding this to my backpack to carry with me.
Posted on May 3, 2018
This week has been ridiculously busy and stressful and there have been many ups and downs. I’m feeling more than a little overwhelmed. I haven’t had much time to write and I’m not quite happy with any of the things I’ve already written; I wasn’t even sure I would be posting. But then I remembered this video. I’ve wanted to post it for a while so here we are. I’ve talked about Anna Akana’s videos before (I think she’s great!) but this one really speaks for itself. Just watch it. It’s worth it.
Posted on April 28, 2018
In my last session with my psychiatrist, we went over my experience of taking Lithium and decided that it was time to try something else. He actually said that he was impressed I’d held out so long so that’s something to be proud of. I think. I wasn’t trying to be a martyr: I’ve just had so many experiences of people brushing me off that I always feel like I have to have enough evidence to prove that it’s real. Anyway, he prescribed me Lamotrigine and because that can be taken with Lithium, I could switch without having to wait for the Lithium to get out of my system. So that was good. I’m getting increasingly frustrated by this process.
As always, this is just my experience. Please, please don’t ever mess around with your medication without the advice of your medical professional.
The first week was really tough. I swung sickeningly between hot and cold, had migraine-like headaches, felt nauseous and shaky and very anxious. I also felt the closest thing to depression that I’ve felt in a while. With the hope of the sleeping through the worst of the side effects, I had started out by taking it at night but straight away I found that it was affecting my quality and ability to actually sleep. I had several nights of barely sleeping until I changed to taking it first thing in the morning.
The main thing in the second week was the extreme fatigue. I slept long hours and found it difficult to wake up in the morning, then I struggled to stay awake but often fell asleep during the day. I was easily overwhelmed and felt anxious most days. The feelings of depression hadn’t dissipated either.
As prescribed, I increased the dose so there wasn’t much time for the side effects to settle. My sleep was still pretty disrupted. I slept restlessly but woke early and fell asleep during the day. I was still incredibly tired. I had periods of feeling very shaky and dizzy; at one point it was so bad that I couldn’t get out bed until the evening. I was still feeling anxious and depressed and although my concentration and motivation hadn’t been great up to that point, it became practically non-existent.
Again, I was sleeping a lot but still absolutely exhausted. I was also very anxious even though there didn’t seem to be a cause for it, which of course made the anxiety worse.
This week was my first week in Nashville so it’s hard to tell what was a result of that and what was a result of the medication. I was more anxious than I have been in months and it got to the point where I was questioning everything, even the things that I’m usually steadfast about. That was very distressing. The jet lag hit me hard and I was constantly exhausted, falling asleep in the middle of the day and still struggling to stay awake until a reasonable bedtime.
The second week of Nashville was a bit easier. I was still exhausted but the anxiety faded a bit as plans started to work out and produce results. That usually lessens some of the anxiety but there was still more than on a normal day and although I had one evening of feeling on top of the world (playing Song Suffragettes – see my Nashville post), I was still struggling to keep my head above the surface of the depression that felt like it was just waiting to drag me under.
During this week, I moved house, something I had been long (at the very least) apprehensive about. So, in the days before, I was anxious and unsettled and then the actual move was very difficult. I was almost too anxious to function and on the evening of the day we moved in, I had a meltdown for the first time in months. It was a horrible experience and for days after, I was fragile and shaky and emotional. I barely slept and even though I don’t eat much anyway, I barely ate at all for a few days. And at the end of the week, something – I don’t know what – triggered a new, suffocating wave of depression that really threw me. That was as low as I’ve been for a very, very long time. I was very depressed and kept bursting into tears; I felt like glass filled to the top with water that you only have to nudge slightly before it spills over. The smallest thing – nothing even – made me cry, or start laughing hysterically that then turned into crying. I was miserable and exhausted. In the midst of all that, we increased the dose but I honestly can’t tell what was medication and what was just life.
It took a while to get out of that depression, even just a little bit. And then I was back in the vague blankness that has been characteristic of my recent experiences with medication: it’s either anxiety and depression or nothing. There was a point when I thought that would be preferable to the extremes of emotion I’m used to feeling but now I know it isn’t. Feeling is everything; there is nothing worse than apathy. And that’s where I still am.
Another thing that I never even wrote down is that I’ve been experiencing muscle twitches, mostly in my legs. It’s not dramatic and it happens so infrequently that I didn’t even equate it with the medication until it had happened several times. It’s not an issue but I think it’s worth mentioning and something that I was concerned would get worse if we continued to increase the dosage.
But after speaking to my psychiatrist again, we’ve decided to try something new. Lamotrigine hasn’t been terrible but it hasn’t been good enough: my concentration and motivation are still terrible, I’m exhausted, and the anxiety and depression are still significant struggles. It hasn’t made anything worse but it also hasn’t made anything better, which is the point of them. So I’m trying a new medication. I know that Lamotrigine is there if I need to come back to it but I need something to hope for.
And a final note: if you’re struggling with medication, whether it’s your first try or your fiftieth, please don’t give up hope. This process is ridiculously long and complicated but when you find the right one, it’s so worth it. You can be you again but more efficient. And that is potentially it forever. You may never need to try another medication again. So this time – this struggle – is an investment. Try to hold on to that.
Posted on April 24, 2018
So I just moved house. It was not fun. I am going to write about it in more detail – I think the experience might be useful, maybe for someone trying to understand how change can affect a person with Autism – but I’m not ready to do that yet. It was really difficult and I’m still pretty emotional about the whole thing. Change is notoriously hard for people with Autism but I think the permanence of a change like moving house is particularly difficult. I definitely learned some lessons during the process so I thought I’d share them.
Some context before we begin: Not only were my family moving, we were separating into different houses, which was something I hadn’t been expecting. That was a real shock to me and made the whole thing even more difficult. But we’re still close and live close enough that we still see each other as much as before, which I’m really grateful for. Now I live with my Mum; I’m not ready to move out.
Right, here we go.
Prepare for emotions, yours and others – First, however you feel is okay. It’s a big deal. Whether you feel everything or nothing, it will take time to work that out. And just when you think you’ve dealt with all of that, it’s time to move and it all comes back. There were lots of tears on the day of the move, as well as the few days after. It’s emotional and stressful and exhausting: the perfect mix for someone to get upset. I think the only thing you can do is be gentle with yourself and each other and give people space when they need it.
Build in as much time as possible – Moving house is exhausting and emotional. And packing at the last minute just makes it worse. Giving yourself time allows you to be careful and methodical and it means you can take breaks if it gets too much.
Label the boxes – The destined room is not enough. By the time you’ve packed everything you own and transported it to your new home, you’ll have no idea where anything is. And every time you need anything, you’ll spend at least twenty minutes digging through all the boxes in order to find it. It will drive you up the wall.
Pack a suitcase – You know me: preparation, preparation, preparation. Make sure you have a bag of things you’re going to need for at least the first week. You might think that you can get yourself sorted in a couple of days but chances are you can’t and you really don’t want to find yourself out of things like clean clothes and make up remover. You don’t need that on top of the stress of moving. Also, remember to check the weather forecast before packing, just in case you find yourself caught unawares by a heat wave with only jumpers to wear like I did.
Try to create a safe space for yourself – Moving house is messy and if you’re anything like me, being surrounded by clutter for extended periods of time makes me feel very claustrophobic and panicked. So, both before moving out and after moving in, I tried to keep one area calm and somewhat neat to give me a space to decompress and recharge in. I wasn’t always successful at keeping it tidy but for the most part, it helped.
Set a reminder to put all your food in the fridge – The last thing you need is all your food going off and with a million things to remember, you’ll most likely forget something. Let that be something else.
QUESTIONS TO THINK ABOUT
How much help do you need?
Depending on your capabilities, you may need to enlist some help to move everything, whether that’s professional movers or friends and family or both. You really don’t want to get halfway through moving day and be unable to keep going so make sure to think carefully about what you need and ask for that help well in advance.
Do you need to be there on moving day?
This obviously depends on whether you’re moving with your family or by yourself: the demands on you will be different. In my case, my family knew how difficult the whole experience had been and so suggested going to see a friend while the removal people did their thing. They thought that the empty house would upset me but I felt like I needed to be there; it helped me say goodbye.
Do you need a clean slate or do you need to keep things familiar?
As already mentioned, change is often hard for autistic people so you might feel the need to keep things as similar as possible, such as furniture and when decorating. But on the flip side, many people with Autism feel emotions very strongly so a change might actually be the less overwhelming option. It wouldn’t be healthy to be constantly reminded of an upsetting event.
Do you need closure and if so, how can you get it?
I definitely needed to say a real goodbye. I’d lived in that house for fifteen years; I felt safe there and there are a lot of memories associated with it. For a long time, it felt impossible to leave. So, once I could consider it, I thought a lot about what would help me leave, knowing that I wouldn’t be coming back. So, on the last day, we took some pictures of me in my room and then I put a letter I’d written for a future resident under a loose floorboard. I can’t tell you why or how but that did help a bit.
ADVICE FOR FRIENDS AND FAMILY
If you’re telling an autistic person that you have to move, be clear. Give them all the information. Especially when there’s so much emotion, it can be hard to process what’s going on so anything that isn’t explicitly stated may get lost.
Give them as much warning as possible. Something like this is really difficult to process – there are so many emotions involved – and it came take time to absorb and make sense of.
So I think that’s everything. I hope this has been interesting and helpful. One last thing to add: I found this article recently that is more relevant to someone moving out of their family home and thought it was definitely worth including here.