When You Don’t Want To Feel Better

I have now been clinically depressed for thirteen months. I’ve been living with depression a lot longer than that but, in May of last year, everything spiralled and I was diagnosed with clinical depression for the second time. So I know my depression pretty well now and there are a few differences between those two states. One is the presence of hope: while living with depression, it’s a constant battle between my depression and the hope that things will change and get better. But sometimes that hope just disappears and the depression takes over. That’s when things start to get really bad. Another difference is the ability to cope; when my depression is particularly bad, I feel completely overwhelmed on a daily basis and devastated on a weekly one. I feel like one more impact and I’ll never recover.

I’ve been in what feels like the lowest place I’ve ever been for the past month. I wish I could describe it but I don’t know if I can; I don’t know if there are words that accurately capture that feeling. It’s like that feeling after you’ve had blood taken, after they’ve pulled the needle out, and your arm hurts in a way you’ve never really felt before but it’s everywhere. It’s like you’re drowning inside your own body. It’s like having a black hole in your chest that’s sucking everything in, leaving you aching and empty. It’s like all of those things and none of them at the same time.

But recently there’s been a slight shift. It’s so slight that saying ‘I feel better,’ feels like a gross over exaggeration and fills me with anxiety. But it is there and that’s really frightening to me. I’ve spent weeks feeling like I’m suffocating, like I can’t possibly survive feeling like this for another minute, but now that that’s not the case, I’m honestly terrified. As miserable as the depression is, ‘better’ is unknown. And scary. As much as I wanted to feel anything else, being depressed is somehow safe and… comforting is the wrong word, but hopefully you know what I mean. It’s clear. I know where the edges are, how it feels. In some ways, being depressed is easier because it’s familiar. I know it sounds weird but it’s like nothing can hurt me because everything hurts already. So, if I step out of that, it opens me up to really feeling hurt again and that is really, really scary.

But what if I’m not ready? Being depressed takes up so much space within me. What if I’m not ready to process everything that I’d have to if that space wasn’t being monopolised by the depression, if it was being filled with more life than I’ve had up until now? That’s overwhelming. I feel so raw and so fragile. What if I’m not strong enough? What if something happens and suddenly I’m crashing down even lower than before? I’m not sure I could survive that. I feel like a fractured windowpane that will shatter if it takes one more hit.

I feel like a little like I’m being dragged into ‘better’ regardless of how I actually feel. I do feel better physically: the brain fog has receded significantly, I don’t feel so numb, to the world and my own emotions, and so on. I’ve even had flashes of future plans, like going to the gym and learning how to bake something new; I haven’t had thoughts like that in a long time. But despite all of that, I don’t feel better mentally so it’s confusing and overwhelming and stressful. I know that that kind of change takes time, conscious processing, and most likely therapy, but that’s hard to remember when I’m feeling so overwhelmed by anxiety.

And part of that anxiety is this suffocating feeling that something bad is about to happen. This is something I’ve struggled with for years (it’s on my list to write about) and although I know it’s completely irrational, it doesn’t feel that way when I’m in it. It feels completely logical. A good thing happened and so a bad thing must happen to balance it out. I dared to want more than I already had and so the universe must punish me for it. When I write it out, I can see how ridiculous it is but it’s how I FEEL. It’s like the instinct that you’re in danger: it’s that strong. You can’t just ignore it. I want to write more about this in the future because it’s important and complicated and distressing.

This is all really overwhelming and scary. And it’s really confusing to suddenly feel like I don’t want to get into a better space after desperately wanting it for so long. It’s really weird when your physical emotions and your mental emotions don’t match, if that makes any sense. I don’t really feel like I understand it so I end up feeling like I don’t want to tell other people because they might assume that it’s as simple as feeling better and therefore expect more from me, more than I’m capable or feel capable of giving. This is a learning curve and I seem to be moving through it very quickly but also very slowly. It’s a mess. I’m a mess. Thank you for sticking with me through this very ramble-y description of it.

I’m Running Out of Clever Titles for Medication Reviews

A couple of months ago, I (with the help of my psychiatrist) decided that it was time to stop taking the Venlafaxine. I don’t feel like it’s helping; it just makes me numb to everything and, as overwhelming as my emotions tend to be, feeling is better than not feeling. It might not always feel like it but that’s the truth. Plus, the side effects are not worth it, even if it was helping: my concentration and motivation were pretty bad before I started taking it but I’m pretty sure it’s gotten worse, especially recently. Writing has been such a struggle, even the practice of it. My depression has always had a negative impact on my creativity but this is the first time I’ve found it so incredibly difficult to simply write at all: getting words out has been like pulling teeth.

So I had some good reasons for wanting to stop and I’d put in the time to make sure I had an informed perspective. So I discussed it with my psychiatrist and we decided that the right move was to wean myself off the Venlafaxine and try something new.

When I first reduced the dosage, I didn’t really feel the difference. I still felt both depressed and numb, which is a really weird combination. But over time that’s changed. Obviously I can’t know how much of that to attribute to the medication change or to life in general but I still think it’s worth keeping track and I recommend this practice to everyone: it allows you to see the trends in your life and analyse what does or doesn’t work for you.

Not long after lowering the dose, I started getting headaches. The pain was very similar to the pain of a migraine but I didn’t have any of the other symptoms that come with it. Normal painkillers didn’t seem to help much and there were several occasions where I just retreated to my bed and tried to sleep through it. I had one of those headaches almost everyday for about two weeks, which was horrible but they have now passed at least. So that’s progress.

Coming out of that, I felt really raw and emotional, which was very weird, having felt so blank for months. I felt like I had no control over my emotions, which was more than a little bit scary, and kept bursting into tears over the smallest things. It’s felt a bit like I’ve had all of my emotions bottled up since I started taking Venlafaxine and suddenly they were overflowing everywhere: if something upset me, I became inconsolable and if someone irritated me, I had the urge to scream at them. I feel very lucky and grateful that I’ve managed not to scream at anyone because that isn’t how I actually feel. Once that emotion has died down a bit and I’ve been able to process the whole experience, that’s how I really feel. I live in fear of saying something I don’t mean and it ruining everything. So far, I’ve managed to manage these emotional tidal waves. They’re still happening though, even now that I’ve stopped taking the Venlafaxine completely.

And more recently I’ve started to have moments where I can think more clearly. They don’t last very long and to begin with, they were so sporadic that I didn’t even connect them to coming off the medication. But now that there have been a handful of them, it seems pretty likely that the two are linked. These moments are amazing. The feeling reminds me a bit of coming up for air after being underwater for a long time. You breathe in and you can almost feel the freshly oxygenated blood rushing around your body; everything suddenly feels so easy and you’re shocked by how hard it was up until that moment. These moments aren’t lasting very long and I wish there were more of them but it’s something.

I realise that I’m not giving this progress the recognition it probably deserves but I’m really not in a place where I can be enthusiastic and optimistic; the most I can manage right now is one foot in front of the other. My depression is worse than ever but at least it’s real. And I’m doing the best I can. That has to be enough.

Autism’s Got Talent

A few weeks ago now, I got to perform at Autism’s Got Talent, a showcase for autistic people put on by the charity, Anna Kennedy Online. The show took place at The Mermaid Theatre in London and saw about twenty different acts perform, from music to dance to magic. It was a surprising, rewarding, and fun experience so I thought I’d write a little something about it.

I really wasn’t sure what to expect. Despite getting my diagnosis nearly three years ago, it’s only recently that I’ve started to attend events for people with Autism. It took me a long time to figure out what my diagnosis meant to me and I needed some time to find steady ground before I felt comfortable to… I guess, ‘publically identify’ as autistic, if that makes sense.  So I’ve only been to a few events like this and I’ve honestly been blown away by how kind everyone is. Everyone working the show was patient and engaged and that made such a difference to the whole atmosphere; it made it a lot less stressful. As a performer, I’ve never been treated badly because of my Autism but I have felt like it’s an inconvenience, that I’m being difficult for struggling with certain things. But at this event, the things that are usually considered adjustments were already built in: there was a room specifically allocated for quiet time; the instructions and explanations were really clear; there was a meet and greet the day before (with some admin stuff) so that everyone had time to get used to everything; they had a fantastic team there to help all of the performers manage the day, all of whom only had two acts to look after; and if anyone was getting stressed, they did an excellent job of remaining calm and composed. These things made for such a supportive environment before and during the show and made the whole thing such a pleasure to be a part of.

The day of the show was a long one. We had a tour of the venue so we knew where everything was and then we got started on the sound check. Despite the long list of performers, I didn’t feel rushed at all: we were encouraged to take our time and get comfortable. Having gigged quite a lot in the last few years, I’m used to doing everything at breakneck speed (only to wait for ages for something else usually) and while I can cope with it, not having to was a real gift. I really appreciated that.

An interesting opportunity I hadn’t foreseen was the chance to be interviewed, about my experience of the show and my experience of Autism. As I’ve said, I’m still making sense of how Autism fits into my identity so that was a bit nerve-wracking, but apart from my constant fear that I’m embarrassing myself, it went okay. And it felt positive – and empowering – to talk about the way I experience the world.

Another thing that really helped was having people I knew with me. I had Richard – my cowriter, guitar player, friend, and general partner in crime – there as he was playing guitar for me but almost everyone had a family member there too and that was really nice. Again, I can cope with being by myself but having people there who know me, who know my anxieties and how to handle them, made the day much more manageable and enjoyable.

The sound check had been well organised so most of us were done by lunchtime. I ran out to do a few things and then had a couple of hours to chill and gather my energy. I definitely needed that. And then, all of sudden, it was time to get back to the theatre, take photos, and go to the green room.

I missed a lot of the first half because I had to be in the green room in preparation for getting on stage for my performance and, although I was sad to miss the performances, I got to hang out with some seriously lovely people that I hope to stay friends with. Obviously being autistic doesn’t automatically make all autistic people compatible friends but there is something pretty magical about meeting people who understand parts of you that others just don’t, naturally and without having to try (I want to write something more in-depth about autistic friends vs. non-autistic friends because I think there’s space for an interesting debate about whether it matters or not, but I did just want to point out the special-ness of having a natural connection with someone that doesn’t require either person to be anything but who they are). We laughed a lot, shared photos of our pets, and sang the Friends theme tune. As much as I love performing, I think that may be my favourite part of the experience!

When it came my turn to perform, we had a technical malfunction: the microphone didn’t work. That’s always a fun way to start a performance… It happens; it was fine. In all seriousness: I’m not fazed by performing anymore. I get nervous and restless before a show but I’ve done it enough that it doesn’t really impact my functioning or my ability to perform; I can be anxious and still handle anything thrown at me (such as equipment failure…) without falling apart. We switched out the microphone and started again. All good. The performance was so much fun (even though ‘Invisible’ is a sad song) and it was really special to play for an audience that was so genuinely supportive of the performers. If you’re reading this and you were there, you guys were wonderful! I also got to mention this blog before leaving the stage, which was cool.

In the interval, something really special happened. A number of people came up to me and told me how ‘Invisible,’ resonated with them or how they wanted to find my blog because they thought it would help someone they knew. The idea that something I’ve done – little old me – could have an impact on someone is so incredible and magical and special to me. All I want to do is create things and help people, and create things that help people. So those interactions are amazing to me. Does that make sense?

It was a really, really special show and there were some amazing performers. I’m so grateful to have had the opportunity to be a part of it. I’m still struggling with my words, as I have been for a while now, but thank you to everyone involved and everyone who came to and supported the show. It means the world to me and I know it means the world to everyone else who performed.