Think Monday’s the worst day of the week? Think again.

Meme found on dailystar.co.uk

For some reason, Friday nights are a particularly difficult time for me. It’s not because I have FOMO about parties or anything like that – even before my illness, I wasn’t much of a party animal anyway. It’s more to do with the fact that social media is like a desolate wasteland during the late hours of Fridays. As someone who relies heavily on social media as a way to communicate, this can be torture. Where ‘healthy, normal’ people would simply be occupied on a Friday night or at least have someone to talk to – or, at the very least, be capable of picking up a phone and initiating the contact – I’m not. None of these things come easily to me. This – lack of socialising – is part one of the problem.

Part two is to do with self-expression. Like anyone else trying to build a brand on social media, I have to make sure my feed is interesting, appealing and not ‘too much’ – but not too little, either, because then I feel out of touch with the world. Can you imagine the pressure when you have schizophrenia and need to live up to these ‘expectations’ knowing that, if you don’t, you risk alienating your followers or tarnishing the online presence you’ve worked so hard to establish? Of course, I could just quit social media entirely and leave it all behind – remove that particular stress – but, then, how else would I feel like I’m reaching out into the world and staying connected? I already sit at my computer all day – I might as well do it wisely!

It’s like having a psychiatrist appointment two weeks from now when you need to talk RIGHT THIS MINUTE. Schizophrenia doesn’t like to wait. It requires immediate attention, whether it’s at a ‘convenient’ 2 pm on a Tuesday or in the middle of a Saturday night! But, inevitably, on the day of your psychiatrist appointment, you’ll be fine and coping well with life – and it will be at the most inopportune time, three days later, that you’ll suddenly feel like everything is too much and need to talk things through, but by then the opportunity has passed and you’ll just have to wait until you can see your psychiatrist again, however quickly their busy schedule will allow it. (Psychiatrists are human, too – they can’t just drop everything and see you in an instant when they have other patients, responsibilities, families etc.) Up, down, rinse, repeat!

Self-expression is vital for anyone, but with schizophrenia, it can be all-consuming. We don’t have much going on in our lives (thanks to our low threshold for stress) and part of the illness is a tendency to fixate on things (due to our impaired ‘executive function’) – so, the gap that would normally be filled with regular everyday activities is very much empty, and we have little means to direct our energy elsewhere. Plus, again, verbal communication is so difficult that it’s often avoided – and, then, what does one do to share one’s thoughts? When you can’t express yourself the ‘normal’ way, you have to find alternative pathways – but, even with the blog I put so much thought and energy into, I’m not guaranteed that people will read it. ((😣)) – So, naturally, I appreciate when people do – thank you!

All I know is – the more people I reach – the more I feel like I’m being heard. Like I’m ‘doing it right’, and will, one day, get where I want to be. This does not mean I’m ‘unhappy’ with where I am right now – not at all. I appreciate every step of the way, every moment in life I can. ‘Wanting more’ doesn’t mean ‘greedy’ or ‘ruthless’, either. For me, ‘wanting more’ is just me expressing my drive and ambition, two integral parts of my personality. Without my drive, without my ambition, I wouldn’t have had my first book published – nor have come this far in my recovery. And, to be honest, it’s more than just ‘wanting more’ – it’s KNOWING what I’m capable of, and having an innate urge to MAKE IT HAPPEN.

Communication is difficult, though, even for the best of us – and, again, there is no guarantee my points will be interpreted exactly the way I intend them to.

So, I’m not saying everyone should log onto Twitter in the middle of their dinner party with friends, to see what Georgia has posted during her uneventful Friday evening (unless, of course, that’s something you suddenly feel a strong inclination to do – in which case, feel free 😉). I’m just trying to highlight one of the many problems of this foul disease, in the hope that someone reads it and understands.

Thank you for reading.

P.S. This post is not meant as a ‘pity party’, and please don’t now feel obliged to write to me on Friday evenings 😀 My point is that my need for communication often falls outside ‘office hours’, if you see what I mean – and my capacity for communication is very limited, but this doesn’t mean I don’t still need it. Unfortunately, timing is key, but difficult to get right. I hope I explained this OK.

THE DARK SIDE

I watched Inception the other night – one of my all-time favourite films. The concept of ‘limbo’ (described as “an expanse of raw, infinite subconscious”) and everything else about the film fascinates me. Christopher Nolan’s (director) idea is delightfully complex, yet fresh (and brilliant), masterfully executed by top-notch actors and packed with edge-of-your-seat action. If you haven’t seen it, what have you been doing with your life?

Joking apart, my mother and brother sit there going, “What? Why? How?” while I am transfixed! (Don’t necessarily ask me to explainthe plot, though – that’s a job for someone who doesn’t have a muddled, schizophrenic kind of thought process) … 😉

But, cognitive functions aside, I’ve been doing so well lately – so, on Friday, having a bit of a ‘dip’ in my mood (and functioning) came as an unwelcome surprise. Yeah, I felt frustrated, angry and helpless all of a sudden (not a state I like being in) – and it continued into Saturday. It’s only today I’m feeling a bit better.

Let me explain:

90 % of the time, I consider myself pretty darn content with life and able to cope – thanks to the massive support from my family, wonderful network, psychiatric nurse and, of course, the medicine I take to control my symptoms. I don’t see any reason to complain. I’ve never been a ‘mood swing’ kind of person. In fact, all things considered, I’m pretty stable that way – usually in a good mood. So, when my mood DOES drop, it’s freaking terrifying (!), because I don’t know how to ‘get back’ to the good mood – and, suddenly, the 90 % of time that I’m not down in the dumps’ seems like a foreign nation (further exacerbating my panic).

There’s also the thought that I SHOULDN’T feel low. That I can’t ‘afford’ it. I’m in such a good place (so much better than I’ve ever been) and all that I’ve slowly and surely built up … I can’t bear to see it ‘go to waste’. What I mean is: when I’m feeling low, I don’t have energy for all the things I normally do ‘without thinking’ on a daily basis. Ceramics. Seeing friends. Going to family get-togethers. Walking my dog. Coping in general. Looking after myself. It’s scary when you can’t even find the energy to wash your hair. To wash your hair.When you can’t listen to music because it feels like an intrusion rather than a pleasure. Having an inner freak-out moment when walking the dog and just having to grit your teeth and keep walking, even though your legs are shaking and your heart is racing, and you can’t put your finger on why …?

So, of course, when these ‘little’ things seem overwhelming – how on earth would you cope with getting out the door, being around people and behaving normally? You wouldn’t. So maybe you apologetically cancel your plans and skip ceramics for one week. But you can’t continue to do that. Unless you’ve had a full-blown relapse, there’s no excuse to just sit at home all day doing nothing.

Limbo – being ‘in-between’. It’s a difficult state to find yourself in. Not ill enough to be hospitalised, but not healthy enough to be a contributing member of society. Easy enough to answer questions in a conversation already taking place, but too challenging to take initiative yourself. Not so drained that all you can do is sleep, but not enough energy to do your makeup and brush your teeth. I’m beginning to understand why the neglect of personal hygiene can often be one of the warning signs that someone is slipping into psychosis. I should add, at this juncture, that I have healthy, well-cared-for teeth but I do know how easy it could be to ‘forget’ to look after them when you’re in the throes of a ‘slump’. With the double-whammy of antipsychotic medication also affecting your mouth (dry mouth being a common side effect) I really understand how important it is to brush and floss on a daily basis. It’s a harsh reality that appearances mean a lot, no matter how ‘shallow’ that might seem. And, unfortunately, society in general is waaay too focused on and obsessed with looks, but it doesn’t change the (psychological) fact that being polished and presentable does work to one’s advantage.

When I’m in this state of limbo (and, thank goodness, it’s not morphed into a relapse since 2015) I feel helpless, panicky – like I’m losing control. And, to some degree, I am losing control – because I can’t control it. My relapse in 2015 came like a bolt from the blue. So why couldn’t it happen again? When I’m already feeling vulnerable, that thought is very frightening. I really can’t be doing with having to rip six months (at least) ‘out of my calendar’ and start from scratch again – especially not with having come SO far. I have so much to lose. Schizophrenia isn’t known for being well-timed, but I haven’t factored relapse into my ‘recovery journey’ since 2015 (because I’ve felt so much more equipped to cope) and, perhaps naively, believe ‘it won’t happen to me again’.

Some people can express their darkest moments through art. I can’t. I simply don’t have the energy to pick up a paintbrush when I’m feeling that way. For me, ‘limbo’ is utterly useless – I don’t learn anything from it, I cannot produce anything of value and all it does is send me spiralling into a state of panic and agitation. This is often when I feel an urge to talk to someone to get relief – but my mum cannot always be my ‘on-call’ 24/7 psychologist. I have to find a healthier, more practical way of dealing with the chaos inside my head when things go pear-shaped.

Writing, as always, helps me SO much. Which is part of the reason why I get extremely anxious when the words just won’t come to me. I couldn’t have written this blog post on Friday (note: for my Danish followers, “on Friday” (in English) can mean both the previous Friday or the upcoming one (unlike in Danish where “på fredag” only means the upcoming Friday). Just so you know – I’m talking about the previous Friday!).

In Inception, a lot of things have to fall into place simultaneously for the team’s mission to succeed. They are attacked from all sides, run into endless obstacles and have to quickly adapt and ultimately complete the mission a lot faster than anticipated. I guess you could liken it to recovery. Having to deal with voices, cognitive symptoms, stress factors, frustrations, side effects, unexpected incidents, bullying trauma and so on, is no easy task while trying to build and live as normal (or just fulfilling) a life as possible … and life also has a habit of demanding your absolute full attention and best efforts, especially when times get tough.

The fascinating concept of dreams, ideas and the subconscious, the superb acting, the use of impressive practical stunts rather than special effects, the brilliance of coordinating a multi-layer dream and even the film not being a typical clear-cut portrayal of ‘good vs. bad’ (due to the unethical nature of Saito’s motives) make Inception a filmic work of art, in my opinion.

Schizophrenia, on the other hand, is messy and ugly. I do my best to explain my experiences with the disease in as concise and honest a way as possible – and hope it continues to reach and help those who need it. How has my book helped you the most?

UPDATE …

Sorry for the radio silence. I’ve been ‘recovering’ from the speech 😉 Naturally, it took a lot of energy. Before, during and after. Especially after. I’ve been tired. So tired! Not much energy for anything other than painting and ceramics. I haven’t even seen my friends for ages!

I’ve also had a slight ‘dip’, which is inevitable (all that positive stress). Feeling a bit low and easily frustrated. When I’m in that kind of mood, I’m not thinking about my blog, I’m thinking about feeling better again. I’m not a depressive person by nature, but I haven’t yet found an effective way out of feeling sad when I feel sad. Waiting for it to ‘blow over’ is difficult, and often I just have to go to sleep and wait till morning – when what I really want to do is find a solution that works! And often when I’m down, everything I normally do without thinking seems insurmountably impossible – so you can imagine how frustrating that is (not being able to write a blog post, do some art, see a friend, or even just go for a walk). It’s just too overwhelming in that moment, and I’m also scared that I’ll ‘associate’ the negative feeling with anything I try to do to get out of the blues … so that thing (whether it’s writing a blog post, doing some art, seeing a friend or going for a walk) will become more challenging in the future, because I’ll have to ‘get over’ the aspect of remembering the negative feeling I had, too. Does that make sense? It seems trivial when I put it into words like that, but it’s something that’s been bothering me for a while! Does anyone else experience this? 🙂

Anyway! What else can I tell you about? Oh yeah … I turned down an opportunity to participate in a TV documentary about voice-hearers. WHAAAAT? I hear you say, but hear me out! I really had to sit down and think about it, and I decided to say no simply because I know how much minor things stress me, and I just didn’t feel ready for that kind of exposure. The format of the program meant that I (and some others) would be followed for several months – and given that it’s taken me this long to recover from a speech, I highly doubt I would be able to be ‘on’ for that long, consistently, in the way I would like. I’m not good ‘on the spot’ – I need preparation and warning, but that doesn’t necessarily work on TV! So, as much as I felt compelled to say yes, I think I’ll stick to communicating my message out in writing – that is my strength, after all – and I’ll just hope they get a good program out of it without me (and my Black Wall of Darkness) 😉

To be honest, I’m really trying to focus on my art and writing – these things are important to me and help me in my recovery. Anything else is something I have to ‘gear myself up’ to do, so, of course, I have to approach it with greater caution.

Apropos … my painting course finishes tomorrow. I’ve attended it for three seasons – with my wonderful Farfar – and thoroughly enjoyed it. Such nice people, and it’s been good for me to get out the house every Wednesday and develop my painting skills in a ‘safe’ environment. But now, I think it’s time to venture down a new path. Last year, I talked about how I’ve been offered the amazing opportunity to work with Maria Rubinke. At the time, I was taken up with my book and everything surrounding it, so we arranged that I would come after all the activity had subsided a bit. I have been at her studio a few times already, and now I look forward to perhaps coming in every week as her protégé and learn how to work in porcelain 🙂 Check out her works – she’s insanely talented!!!

So that’s what’s happening for me right now. I hope you’re all doing okay.