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.
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.