The Last Few Weeks…

I’m not quite sure how to describe the last few weeks. Intense, maybe. There’s been a lot going on and I’ve done things and felt things that I’ve wanted to write about but couldn’t figure out how. So I’m writing this, with the good, the bad, and the weird of the last few weeks.

So first, I got to take part in a research study for the Centre for Research in Autism and Education at University College London. I’ve written about my experience with research studies before (here) so I won’t ramble on but I love doing them. It often feels like Autism takes opportunities away from me but this allows me to do something I’d never expected and that’s really exciting. I got to put the EEG cap back on and have my brain waves monitored while I did some computer tasks. It was investigating perceptual capacity in Autism (which I’ve written more about here) and it was really fun, like a Windows computer game from the nineties. And apart from trying to get the saline gel out of my hair, it was a really great experience.

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I also went and gave blood for the first time. That was very exciting! I’ve wanted to give blood for years but up until now I haven’t been well enough or I was on medication that disqualified me. So getting to do it was really exciting and a really cool experience. Everyone was really lovely and I’ve since had a text telling me where my donated blood has gone. So the whole thing was really special and I will definitely do it again.

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Despite these cool and inspiring experiences, my mental health has been pretty bad: I reached a new low with my depression. I feel like I’m always saying that the current period of depression is the worst it’s ever been but for me, there are real differences: new thought patterns, new emotional states, new lines, new fears. Each period of depression has a different colour. Anyway. It’s been really bad and really hard and I’ve had some desperate moments.

Medication wise, it’s been a rollercoaster. As per usual. I got myself all but off the Amitriptyline a while ago but I just wasn’t ready to try another medication straight away. It’s a tough process and I just needed some time to feel steady, even if that was steadily bad. Maybe not the most logical decision I’ve made but it made sense to me at the time. And ultimately it doesn’t matter now. I’ve started the Clomipramine, which is what everyone wanted me to do. Finding the right medication and the right dosage can be pretty gruelling and I just needed to be in the right mental headspace. I’m not sure how I feel about the Clomipramine but it’s still early days.

And on this last Monday, I went to see Maren Morris play an amazing, intimate show at OMEARA in London. The staff were great about making it accessible and I was let in without having to queue and there was a chair reserved for me – I really, really miss the days where I could stand for hours without a problem. And the show was fantastic. Maren is one of my all time favourite artists/songwriters and it was one of the best shows I’ve ever been to.

“When this wonderful world gets heavy and I need to find my escape… yeah, I guess that’s my church.” // @marenmorris was a complete dream tonight. Beautiful, beautiful songs, singing, and stories. My little songwriter soul is so happy. (x)

It might be blurry but I love this photo of me and @richardmarcmusic after the @marenmorris show tonight. We had SUCH a good time. We’re constantly listening to her music, whether we’re in a songwriting session or just chilling out and playing Mariokart. So we were two happy beans tonight. (x)

And now it’s December. Most of my family have birthdays in December and January and of course there’s Christmas and New Year. So that’s a lot of fun things but it also means a lot of high emotion and stress. It’s a tricky time. I’ve found Christmas difficult for the last few years so I’m going to have to be careful to manage my physical and mental health throughout this period. I’m going back to the post I wrote last year about managing Christmas with anxiety and Autism – if that sounds like it might be helpful, you can find it here.

Mental Health and Medication Update

I’m struggling. And I’m struggling to write this post.

Medication wise, I’m taking Amitriptyline for my depression and Pregaballin for my anxiety. The Amitriptyline has definitely helped with the physical symptoms of my depression: my concentration is better, I can think more clearly, and my appetite has returned. But as the depression pulled back, my anxiety returned in full force. It was so bad that I had to have something playing – music, audiobook, TV show – and playing loud so that I couldn’t think and therefore the anxiety couldn’t take hold, if that makes sense. I started to hate the evenings and going to bed because as the busy-ness that filled the day faded, my anxiety got stronger and stronger. Hence the Pregaballin. I’ve tolerated these medications pretty well. The thing I’ve noticed most is that I constantly have a dry mouth so I’m drinking ridiculous amounts of water every day. But that was something I needed to improve anyway and I’ve had far worse side effects.

For a while, everything was pretty good. I had some really good days, the kind I haven’t had for a really long time. That was really special. But the anxiety and depression – the depression especially – have crept back in and it’s a struggle to even get out of bed. I was starting to think that Amitriptyline might be the right medication but now I’m not sure. I can summon enough energy for the odd social interaction or professional opportunity but I’m really, really struggling with my energy. It doesn’t help that all day, every day something inside of me is screaming at me to crawl under my duvet and sleep for the rest of my life. I feel invisible and useless and miserable. Just living feels overwhelming.

My perception of time has completely flipped. Up until recently, time felt like it was moving really quickly, like I’d sit down to write a blog post and the whole day would be gone even though I’d barely written more than a few sentences. Everything seemed to take so much time. But now a day seems to last a week. When I’m having a good day, that’s great; I can achieve so much. But on a bad day – and I’m having quite a few of those – it’s overwhelming: I have to actively survive that long. So much happens, so many emotional ups and downs. It’s exhausting.

I don’t know what to do. But I’m in regular contact with my psychiatrist and my therapist; I’m trying to stick to my routine (swimming first thing in the morning, scheduled time for music practice, and so on); I’m talking it all through with my Mum. I guess I’m just muddling through.

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An Introduction to Amitriptyline

I have now been taking Amitriptyline for about six weeks so it’s probably time to take a step back and get some perspective. I usually look at it week by week but this time, that doesn’t really make sense. The effects (and side effects) have been fairly consistent…

I’ve been feeling overly emotional ever since I stopped taking the Venlafaxine and that hasn’t changed with the addition of Amitriptyline. Everything makes me cry, from difficult decisions to TV storylines. And sometimes I cry for no reason at all. After twelve months of feeling incredibly disconnected from my emotions, it’s pretty overwhelming. I’ve described it as similar to turning an old tap: it’s nothing, nothing, nothing and then suddenly, it’s spilling everywhere and I’m emoting all over the place. It feels very extreme and I don’t seem to be able to control it.

But having said that, I am thinking more clearly. Up until very recently, I’ve been struggling to think, to write, to engage at all. I’m not sure I can really explain it: it’s so deeply rooted in feelings rather than words. It’s not really measurable. It’s kind of like trying to run through water: it takes so much energy to achieve so little. And once you get out of the water, moving is so easy and it’s such a relief. I’m so relieved to be able to think again. I don’t feel like I’m back to normal (and I’m still struggling in the songwriting department) but the fact that I can even write this out is a big deal.

One weird consequence of changing medications is that I want to eat all the time. I really hadn’t expected that. When I stopped taking the Venlafaxine, I was eating about one meal a day: I didn’t have much will to eat and the medication made me incredibly nauseous. And now, the urge to eat is there at all times. There have been days where I haven’t been able to concentrate because all I can think about is food. It’s causing me a lot of anxiety: firstly, because it’s a pretty extreme change (and I am NOT good with change) and secondly, because eating doesn’t satisfy the urge. I eat and it’s still there. It’s so frustrating. I’m not quite sure what to do about it.

My depression hasn’t lifted (yet?) but it has definitely shifted and in the reshuffle, my anxiety has come back in full force. I’m anxious all the time. Before, it felt like I was too disconnected from everything to really feel any anxiety but now, it’s almost overwhelming. I feel like I’m constantly running from it, filling my day with distractions to keep it at bay. But then, at night, it takes over. It’s made me anxious about going to bed and there have been more than a few occasions where I’ve accidentally stayed up all night in my attempts to distract myself. The anxieties themselves aren’t new but usually I’d only have to deal with them one at a time whereas now it’s like they’re all present all the time. It’s exhausting and scary and draining.

So it’s neither a miracle nor a disaster. And it’s better than the Venlafaxine. Other than that, I don’t know. I’m feeling very overwhelmed at the moment.

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.

Mental Health Awareness Week 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.

Hello and Goodbye to Lithium

About a month ago, I went back to my psychiatrist. We discussed the Venlafaxine and since it hasn’t had the effect we’d hoped for, it was time to think about what to do next. The most obvious option, the one most likely to work in the shortest amount of time, was to add an ‘augmenting agent’ and so I started taking Lithium. I’m aware of the perception of Lithium but it didn’t worry me, not any more than any other medication anyway. I’m always hopeful that a new medication will work, and if that comes with the opportunity to defy expectations then it’s even better. So I was feeling optimistic and, as I did with the Venlafaxine, I took notes so that I could track any progress and/or side effects.


FIRST NIGHT AND NEXT DAY

As the first night and then day was pretty interesting, I thought I’d write this one up separately. I slept restlessly and woke up multiple times with night sweats. The first time I woke up was very surreal: I was overwhelmed by the physical sensations in my body. I remember thinking, “I can really feel my hands. I really have hands.” It was very strange. I struggled to get back to sleep and when I got up in the morning, I felt very nauseous. I had a headache all day and by the evening, I felt very spaced out and tired.

WEEK 1

The restless sleep and night sweats continued, joined by complicated and busy dreams. I found it very difficult to wake up and I was so sleepy that I was falling asleep multiple times during the day. When I was awake, I was tired and weak, like there was no strength stored in my body. It was frustrating and upsetting to struggle to do everything I would normally do. I was spaced out and nauseous and shaky; if I stood up for more than about thirty seconds, I got dizzy and nauseous and my vision went white. It was horrible.

WEEK 2

I was still having difficulty sleeping and was struggling with sleepiness during the day. I continued to struggle with nausea and feeling spaced out but I also felt low; I think I would’ve felt depressed if I was able to really feel anything. The shakiness and weakness also continued.

WEEK 3

And we STILL have difficulty sleeping. It was taking me hours to get to sleep and hours to wake up and in the few hours between, I slept very restlessly. Then when I was awake, I was very sleepy. The shakiness, weakness, and nausea combination was still around. I also started to struggle with almost constant anxiety; there were stressful things going on but I couldn’t seem to shake it off once I’d done those things so it was around all the time.

WEEK 4

Continued difficulty sleeping, especially staying asleep and then I was so tired that I fell asleep during the day. Those short sleeps were actually the best I’ve had in months, much better than the hours I got at night. I was also still struggling with the shakiness, dizziness, and nausea, as well as the anxiety.

WEEK 5

The restless sleep continued, as did the struggling to wake up. On several occasions, I fought to wake up only to fall asleep again; I also fell asleep during the day multiple times. I was constantly tired. The nausea and dizziness also continued, as did the anxiety.


I did not like taking Lithium. It didn’t actually help my depression – I’m still feeling very emotionally numb and the fatigue has only gotten worse – and the side effects were constant and actually got worse over time: the difficulty sleeping, the shakiness/dizziness/nausea combination as well as all of those as separate symptoms… I was struggling so much that I had multiple doctors’ appointments to make sure that nothing else was going on. I had blood tests and blood pressure tests and even an ECG. They didn’t show anything outside the normal ranges but the fact that it was bad enough to warrant those tests meant that I booked an appointment with my psychiatrist for as soon as possible to look at my medication.

I have now had that appointment and we’ve decided to stop the Lithium; he was surprised and impressed, I think, that I’d stuck with it so long considering how bad the side effects were. Since the Venlafaxine hasn’t done much for me, I’d like to try something else but given how much is happening in the next couple of months, I’m reluctant to put myself through the ordeal of getting off it, the period of no medication, and then getting onto something new. So for now, I’m trying a new augmenting agent and I guess we’ll see how that goes. I think the emotional numbness is preventing me from getting too low about anything but regardless of that, I’m still optimistic about medication, even with all the bad experiences I’ve had recently. I fully believe that it was Phenelzine that made going to university possible and even now, years later, I still remember so clearly how good I felt when I started taking it. It felt like I was flying. It was amazing. Searching for that will always be better than letting the depression take over, even if I have to let it take over to remember that.

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2018, I’ll Make You A Deal

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.