When Things Get Really Bad

Since I last posted on here, literally all I’ve done is survive.

After putting up last week’s post, I went to therapy, which just about wrecked me. It was really hard going. I don’t want to get too into what we talked about and what I’m currently struggling with because I’m really struggling with it and I’m still figuring out how to put all of it into words. But I think the gist of it is important to include: I’m struggling with ‘feeling’ autistic, like I’m never going to be able to function the same way as everyone else. I don’t know how to cope with a thought like that. And that has really triggered my depression, in a massive way. I feel like I say this every time, but it feels like the worst place I’ve ever been; but maybe I say it every time because each time takes more out of me.

It looks so small and simple when I write it out like that. But in reality it’s powerful enough to overwhelm everything.

I left therapy feeling absolutely drained. I didn’t know how I was going to get through the day, get through the week to the next session. But somehow I did, one minute at a time. This week has been about survival because sometimes that’s all you can manage – I feel like I’m standing on the very edge of the black hole that is my depression and it’s taking all of my focus to not get pulled in. So while I feel like I’ve achieved nothing, I’ve actually achieved everything. At least that’s what I’m trying to tell myself.

So I thought I’d write down what I do when I’m in this place, where the only thing I can do is survive:

Each day, I get up at seven and go to the gym to swim for thirty minutes. I always want to do more but through trial and error (usually error), I’ve found that this is the amount I can do and still kind of function. If I push on, I end up falling asleep during the day and screwing up my sleeping pattern or I end up in a place where everything makes me cry. So I’m trying to be sensible and build it up slowly.

I get home and head for the living room. I curl up on the sofa, turn on the TV and continue the rewatch of whatever TV show I’m watching (currently The Mentalist). I’m not really watching; it’s more about having familiar, comforting background noise so that the scary thoughts can’t get in. Then I find something that will distract me from all the overwhelmingly difficult things. The activities that work best for me are playing piano and printing, cutting, and sticking pictures from Tumblr into notebooks. And sometimes reading a book works, if I have the concentration to actually read.

And I use those things to get me through the day. I spend time with the animals in my house. I’m lucky enough to have a Mum who works from home so that I can have someone with me when I need to have someone with me. I try to eat well.

And then I go to bed not too late and start all over again.

It’s a hard thing to get my head around and I’m aware that I’m very hard on myself. Because even though I genuinely believe that sometimes all you can do is survive, I find myself getting desperately upset that I’m ‘not doing anything.’ I feel like I’m not trying hard enough – in my mental health, in my music, in my life – and that I should ‘push through it.’ And it’s so hard to think that when I feel so overwhelmed by my depression.

And, outside all of that stuff, someone I care about is in hospital and no one really knows what the outcome is going to be. So I’m trying to manage all the anxiety around that too but it’s like trying to stand on ground that’s constantly shifting.

I think that, if I keep writing, I’m going to end up going in circles: ‘it’s okay to focus on surviving’ to ‘I should be trying harder’ and back to ‘it’s okay to focus on surviving’ and round and round and round. So I’m going to stop here. But regardless of all my anxieties and negative thoughts, I know that it’s okay to focus on surviving. And I hope you know that too.

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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Hannah Jane Parkinson on Mental Health and Mental Illness

Not long ago, I read an article in the Guardian Magazine and I really wanted to share it with you guys. Hannah Jane Parkinson writes about her experience with mental illness, the conversation around mental health, and how we can make real change happen. She doesn’t pull any punches, which can make it hard to read, but that’s exactly why it needs to be out there because even though we are making progress around mental health, there’s still a long way to go. And that’s what this article is about. I really recommend reading the whole thing (you can find it here) because I just cannot do it justice without posting the entire article.

The whole article is important but here are some of the most important points:

“We should normalise the importance of good mental health and wellbeing, of course. Normalise how important it is to look after oneself – eat well, socialise, exercise – and how beneficial it can and should be to talk and ask for help. But don’t conflate poor mental health with mental illness, even if one can lead to the other. One can have a mental illness and good mental health, and vice versa.”

A very important point as it’s so easy to blur the two together.

“Like the rest of the population, I instinctively love the NHS, from the junior doctors to the consultants to the community psychiatric nurses. But, really, if you asked me right now? I hate the NHS. I hate the thin film of skin on its bones. It is incompetent and ailing. I used to blame the system. Mostly it is the system: those never-ending cuts and closures; the bureaucracy; the constant snafus of communication; the government’s contempt for staff.”

This is such an important issue to talk about. I feel exactly the same way. I love the NHS and I’m so grateful that it exists: it has literally saved the lives of several of my friends. I would fight to the death for it. But when it comes to mental health and mental illness, it’s incredibly lacking. I saw so many people who either couldn’t help me because of how the system works or wouldn’t help me because they didn’t understand, or even know of, what I was struggling with. And I know many people who’ve had the same experience. It’s a really upsetting, difficult situation and there’s no simple solution.

“The truth is: enough awareness has been raised. We – the public, the health professionals, the politicians – need to make our words and actions count for more. First, the Conversation needs to be more inclusive when it comes to rarer conditions, and to people whose voices are less loud. Second, we need to recognise that posting “stars can’t shine without darkness” on social media might piss someone off in the midst of desperation and that, actually, anxiety can be a normal reaction and is different from general anxiety disorder, a serious condition. That feeling down is not the same as depression.

Then, action. Donate to Mind; volunteer as a Samaritan. Vote for politicians who aren’t going to decimate our National Health Service or who support policies that lead to greater incidences of mental health problems (because it’s not just physical; society and environment plays its part).

What does the government need to do? Hire more staff, and then more. Enough staff to provide a service that meets individual needs. That means better working conditions and pay, and not piling all funding into a single type of therapy or care path. Clinical commissioning groups need to spend money earmarked for mental health on mental health. Prescription charges for long-term conditions should be reviewed. Funding and research must be increased.”

One of the things that, I think, sets this article apart from others I’ve read is that it includes concrete steps that we can all take. So often, articles talk a whole lot about how we need to create change but then they finish without actually telling us how to do it. I finished reading this article and felt empowered, like I could actually make a difference when, usually, the situation makes you (or, at least, it makes me) feel overwhelmed and hopeless.

These are some of the big points made in the article. But as I said, go and read the whole thing. It’s a really important piece of writing.

It’s taken me a really long time to write this out because the article talks about issues that make me really emotional and because there are so many quotes that I could pull out and talk about. While our experiences of mental illness are very different, there were so many things in this piece that I related to, this one maybe most of all:

So I am a newspaper journalist – for now. But I don’t know how long for because the illness might grip itself around me so tightly that it cuts off everything I love and hold dear, and my ability to lead a normal life.”

Thank you, Hannah Jane Parkinson, for writing such an important, moving piece.

How Are We Already Halfway Through The Year?

At the beginning of the year, I set myself a handful of goals for 2018 and as we’ve just hit July, I thought it might be wise to have another look at them to see how or whether I’m achieving them. There’s been a lot of hard stuff so far, which has pretty much dominated my life so I’m not super optimistic about my progress but let’s have a look…

WRITE MORE SONGS

Technically I have done some writing so I have achieved this but I feel like I’ve achieved it in the worst way possible. I’ve been struggling so much with my concentration, my motivation, and my general cognitive ability that writing has been gruelling at best. Throw in the recent period of struggling to actually put sentences together and you can imagine that I haven’t been getting very far. It’s hard to feel good about the songs I did manage to write too. So, all in all, it’s been a bit of a mess, but I’m cautiously (VERY cautiously) optimistic about this new medication. At the very least, coming off the Venlafaxine has allowed my brain to start functioning again. It’s overwhelming at times – it feels like a firework display in my head and I’m desperately trying to look at everything before it disappears – but it’s a thousand percent better than the alternative.

RELEASE MUSIC

Yes! Yes, yes, yes! Invisible is out! My very first single is out in the world. It’s been very surreal and weird and I thought I’d feel less stressed once I had music out in the world, but nope. Even more stressed. Anyway, I did it. I (with the help of some very awesome people) jumped the first hurdle. That’s a big deal. Now, on to the next hurdle.

FIND THE RIGHT MEDICATION

Well, I found a lot of wrong ones. That’s all I’m sure of right now. Hopefully the new one will be the right one.

BECOME MORE INDEPENDENT

This is a tricky one because I’ve been mentally (and so physically as well) worse than I have been in a really long time. So it’s not really been the right time to try and be more independent; I’ve had a hard enough time being functional at all. But having said that, there have been a few things of note. I have been slightly more adventurous with food: I’ve been trying new things, which has always been a struggle for me, so that’s progress. I also discovered the Deliveroo app (I know, I’m way behind the times), which has helped me to be less dependent on other people. I’m not sure it’s exactly the same thing as being more independent but again, it’s progress. And finally, I found an app that makes sorting cabs easier. I have been so desperately low on energy recently that I’ve been relying on my Mum and her car so having that app has made things a bit easier.

WORK ON BEING HEALTHIER

Who knows with this one… When I was taking Phenelzine (and eating badly at university), I gained a lot of weight, all of which and more I’ve lost over the last nine months or so. That, I think, has mainly been due to the nausea I’ve been experiencing as a side effect from various medications, as well as my depression affecting my appetite and will to eat. I’m aware that that’s not the healthiest way to do it but it is what it is. I wanted to get back into a rhythm at the gym and do more swimming but I just haven’t been able to; I haven’t had the energy and I haven’t felt up to being surrounded by noise and people and life. Honestly, I have no idea how this one is going to for the rest of the year. I’ve spent the last six months or so in survival mode, trying to make myself eat the bare minimum, so motivating myself to be healthier hasn’t even felt possible.

READ MORE BOOKS (MORE THAN FIVE)

I feel quite good about this one. Although I’ve really struggled with my concentration and motivation over the last six months, I have rediscovered how much I love reading, which is so, so nice. I’ve read six books so far (what?!) and now that my brain feels a bit clearer, I’m really looking forward to reading more. I even have a list!

IMPROVE MY MUSICAL SKILLS

I have made zero progress on this one. I have just been too unwell to do anything about it. Plus, after the house move, I no longer have a piano, which obviously makes practicing the piano harder…

GO THROUGH MY POSSESSIONS

As I said when I set this one, I was in the process of moving house so I was going to be forced to do this and I was. I donated at least a third of my clothes to charity, quite possibly more, and threw out a fair amount that was practically worn out. I’ve bought my own desk (the one I had was borrowed), and replaced my bed: I HATED (and had hated for a long time) the one I had and the new one is much more practical with drawers underneath for storage. So I’ve definitely achieved this one and there’s more to go: there isn’t enough space for all my stuff in my new room. Throwing away things that I’m emotionally attached to (or have been in the past) is really hard for me so it’s been a big deal but I’ve done well so far and feel good about it going forward.

So, overall, I think I could’ve done worse and, of course, there are still six months left of the year. That’s plenty of time.

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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.

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.