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.

A Little Less Wise?

So this week’s adventure was having one of my wisdom teeth removed. This has been a long time coming and it’s been bothering me for almost a year but apparently it wasn’t easily accessible or something else dentist-y. So we waited. But, at my last appointment, it was deemed removable and here we are.

If you’ve read my post about seeing a specialist dentist, then you’ll understand my fears around dental work. Seeing the specialist dentist has been a lifesaver and one of the best, most helpful things to come out of getting my Autism diagnosis. And with the help of the wonderfully kind and patient staff, I finally managed to have what would probably be considered a normal check up a few weeks ago. That was a huge milestone. And so, not wanting to undo all that progress, I was scheduled to have my wisdom tooth (and a filling) done under general anaesthetic.

On Thursday of this week, I got up super early and headed to the hospital. It was actually a private hospital so everything was very smart and efficient and the whole thing was over very quickly, although I was under for three hours rather than the originally planned one. I woke up feeling remarkably okay, a bit sore but otherwise fine. After my experience with Quetiapine, waking up from a general anaesthetic was like waking up from a nap and the pain in my face wasn’t too bad. In fact, I was bothered more by the headache I’d woken up with, which I’m pretty sure was a side effect of coming off Venlafaxine (I’ve been having almost migraine level headaches a lot lately – but more on that in another post). So it wasn’t long before I was discharged and out of there.

A couple of days on and I’m not feeling great. I’m fine but it’s still painful enough that I can’t really do anything other than sleep. So I’m sleeping a lot, taking painkillers, and trying not to stress myself out. The weirdest thing has been the way my lips have been twitching ever since I woke up from the anaesthetic (kind of like when you have a jumping nerve in your eyelid – really annoying, right?). This is listed as one of the side effects in the paperwork so while I’m not panicking, it’s pretty unnerving. I’ll be relieved when that wears off – apparently it shouldn’t last more than a few weeks, although I’m obviously hoping it will be less than that.

Comparative to my last dentistry-under-general-anaesthetic experience, this one has been considerably better. The worst part last time was that they accidentally split my lip in the corner of my mouth so every time I opened my mouth for the next week or so, the cut reopened, which was very unpleasant. My Mum remembered to bring that up when we spoke to them beforehand and so they slathered me with Vaseline throughout the procedure. It was pretty gross afterwards but I’m very grateful that they did it; I’m really glad that I didn’t have to go through that again.

I’m sorry if this isn’t the most articulate blog post I’ve written. My brain has been feeling fairly scrambled recently, after all the medication changes and the general anaesthetic, and getting my words to flow has been a struggle. Hopefully that will pass soon.

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A Need For Balance

In this video, Samantha Pena talks about her experience of OCD, what it’s like to live with it, and what she’s gained. Her experience is pretty different to mine but there are definitely parts of this that I strongly relate to, especially the intensity.

Here are some quotes from the video:

  • “It’s like being underwater for an extended period of time. You’re holding your breath and it’s scary. And without even thinking about it, your body naturally tells you that bad things will happen if you stay underwater. Your body tells you to fight to get out of that situation. That’s the way my body felt every time I touched something asymmetrically.”
  • “OCD is Obsessive Compulsive Disorder. It’s one of many anxiety disorders and it all starts with the obsessions. The obsessions are the recurring, uncomfortable thoughts and worries that lead to the compulsions. The compulsions are in response to the obsessions, attempting to satisfy them, and it becomes a disorder when your obsessions and compulsions take up so much of your time that you are unable to move through your day ‘normally.’”
  • “I avoid door handles because the cold metal sensation takes a lot for me to recuperate from.”
  • “Anytime I’m itchy, I’m twice as itchy.”
  • “An average day for me means avoiding thirty two different sections of lines on the ground, sixty fixes for any time anyone touches me or bumps into me, mentally preparing for a hundred and twenty four door handles, two hundred and seventy casual encounters anytime I have to touch something, and four hundred and twenty itches. In total, that’s nine hundred and six obsessive-compulsive thoughts that occur within one day. And that’s only symmetry related.”
  • “I was so anxious that it hurt. It was easier to deal with my [school] binders than to live my own anxiety.”
  • “I always mentally prepare for my day. I always have a plan. I even plan to plan my next plan.”
  • “There is an overall understanding within me that life has a need for balance.”
  • “I often hear the expression I ‘work better under pressure.’ I have OCD. I am literally always under pressure.”

A Buddy Box From The Blurt Foundation

I’ve been meaning to write this post for ages but the last month has been so busy that getting in writing time has been a struggle. But here we are. I’ve finally managed it!

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For those of you who don’t know, one of the things The Blurt Foundation sell in their shop is a BuddyBox, a little box of things chosen to “nourish, inspire, and encourage self-care.” You can buy them as a one-off or you can buy a subscription and receive one every month. I really loved the idea and when I showed them to my Mum, she said she would buy me one as a gift. So I ordered one and then forgot about it, what with my single coming out and accidentally going into withdrawal, so I was very excited when it came through the door a few weeks ago. Opening it actually made my day and really lifted my mood, which is pretty impressive considering how low I was feeling. The title for this one was, ‘Self-Care Isn’t Sel-fish,’ so there was a definite theme going and that made me smile. This is what I found inside:

Socks

The socks were the first thing I saw when I opened the box and I was so excited. They made me smile so much. They’re so cute and they’re really soft. Excellent socks!

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Soap

I haven’t tried the soap, mainly because it smells so strongly that being in the same room as it is a pretty overwhelming experience. But then I’m really sensitive so it’s not often that I can find a soap that isn’t too strong for me. Maybe one day Blurt will do a Buddy Box specifically for those of us who are super sensitive. Fortunately, many of my friends and family like this kind of soap so I’m sure I can find it a good home, someone who will really enjoy using it.

Hot Chocolate Stirring Spoon

Given that it’s been so warm recently, there haven’t been many opportunities for hot chocolate. My Mum suggested using it to make chocolate milk instead, which is a very sensible suggestion but I’m loath to use it casually. So I guess I’m saving it for a moment where I really need it. But it looks really cute and I’m excited about it.

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Temporary Tattoos

These are super cute. The designs are simple and colourful with positive messages, affirmations like ‘I am enough’ and ‘be kind to yourself.’ I’ve got a friend who will also love these so I’m going to save them until I see her; we’ve got a date coming up and I can definitely see us eating popcorn, listening to Taylor Swift, and applying these. And possibly doing a mini photoshoot.

Blurt Zine

I really like this little booklet. It’s very short so it’s quick to read and easy to digest and I found the two pieces of writing encouraging and inspiring. I would add some concrete tips at the end thought: the concepts discussed were really good ones (like the importance of taking rest time) but putting them into action can be really hard. I think some ideas like that would be really helpful, but that’s the only I’d change.

Where Do Ideas Come From + Extra Cards

These little extras are really cute and as a person who does struggle with creative block, I’m excited about the guide to where ideas comes from!

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Well, thank you Blurt for a very lovely package and for running such a lovely service. Self care is so important, so having a few things to hand is always a good idea.

So I Accidentally Went Into Withdrawal…

Most of the time, I’m very good at taking my pills. I’ve had a few moments where a change in routine or a dramatic event has thrown off my rhythm but usually, I’m very diligent about taking my medication. We have a good relationship, even when I’m struggling with side effects: I know that I’m taking them to improve my quality of life and that knowledge helps me to push through whatever worries or difficulties that I have.

Having said all of that, I accidentally went into withdrawal a few weeks ago. A series of exceptionally busy days left me so tired that I just kept forgetting to take my meds before going to bed. As a one off, it’s not great but it’s not a huge deal. It happens and you resolve to be more careful. But with everything going on, suddenly four days had passed and I was in withdrawal.

I’d had a headache the day before, one that felt like my brain was too big for my skull and made me feel nauseous if I moved my eyes too fast. It was very unpleasant but I hadn’t thought much of it since it followed a very long, very busy day; a terrible headache after something like that isn’t uncommon for me. It’s like a hangover, but from socialising rather than alcohol. So I hadn’t been too worried but when I woke up the next morning (the fourth day without my medication), I couldn’t think properly. It’s hard to explain but it was like I couldn’t hold on to a single thought: one would appear and before I could follow it through, another ten would’ve flashed passed, leaving me confused and nauseous. I’ve never felt like we have full control over our thoughts – sometimes ideas appear out of nowhere and sometimes you can’t stop thinking about something regardless of how hard you try – but I do believe we have some control; you can choose which pathways to follow and which to leave unexplored, even if you can’t forget about it, for example. So to have absolutely no control over my mind was terrifying. I tried to keep calm and slowly collect my thoughts but I just couldn’t do it and ended up sobbing in my bed, curled up in the foetal position. It was really, really unpleasant.

My Mum called my psychiatrist and his advice was to take a normal dose straight away and then restart my normal routine that night so that’s what I did and within a couple of hours, I felt more normal. I could think again; the thought progressions had returned to their normal speed and made more sense, rather than being so chaotic and out of my control. So that was a huge improvement but I was completely exhausted by the experience. I spent the rest of the day on the sofa.

It was almost a week before I felt like myself again. I had trouble concentrating and had a tendency to zone out mid conversation; it kind of felt like I didn’t have enough brainpower to sustain one. Everything felt much more tiring.

So that’s my little cautionary tale. It’s so important to take your meds responsibly because not doing so can have pretty serious consequences. I was lucky: it was miserable but easily and quickly rectified. It could’ve been much worse. So, if you’re reading this and need to take your medication, please drop everything and take it now! This isn’t supposed to be advice for how to handle withdrawal (if you need that advice, please ask your medical professional!), more a description of the experience in the hope that it might be helpful to someone. Taking medication can be such a complicated, confusing ordeal and not talking about it only makes the process harder.