Tag Archives: PTSD

May 28, 2016

Of triggers, traumas and taking control

By jenbitespeople

There’s been a lot of talk on the interwebs of late about trigger warnings. What are they, who needs them, should we have them everywhere or nowhere, what good do they do? I’m not mad keen on them, myself – I can see a purpose in the basic sex/violence warnings you get on DVD boxes, since those are things that bother many people for many reasons, but I don’t see how they can usefully extend beyond these broad categories.

 

The thing about being triggered is that it’s completely different to being made to feel a bit uncomfortable. Triggers are part of living with PTSD. People who are triggered experience extreme, excessive reactions to stimuli – things like flashbacks, uncontrollable shaking, spontaneous nausea/vomiting, the fight/flight/freeze response. It can change your mood for days, give you nightmares, kill your appetite, prevent you from sleeping, cause dissociative episodes… Of course, not everybody experiences all of these things, but the point is that there’s a lot more to it than just not liking to see or hear something (and the people who co-opt the term “triggering” as a means of censoring and controlling those around them do none of us any favours).

 

Having dealt with PTSD for several years now, I’m no stranger to triggering and know very well the difference between something that triggers me and something that just upsets me. If I’m reading a book or watching a film or play and someone loses their loved ones through death or abandonment, it will upset me (if it’s done believably, otherwise it’ll just piss me off). I will probably cry. It probably won’t make me want to stop watching or reading, unless it’s really close to home. Breaking Bad came close once or twice, because Walter White strongly reminds me of my dad in terms of looks, temperament and physicality, and watching the character going through cancer treatment in the first season was tough. It made me very sad, and I thought about my dad a lot while I was watching it and missed him badly. It pained me that I’ll never get to show him Breaking Bad and tease him about the resemblance. But it didn’t trigger me. It caused me to have a perfectly normal response to being reminded of someone I still miss.

 

So what does trigger me? Well, the one I encounter most often is car crash noises. Some shows and films use very realistic crash sounds, and I find those hard to handle. I can usually rely on structure and lead-up to see it coming, in which case I’ll get ready and make sure I’ve covered my ears and am not looking at the screen when it happens. The trouble is that sometimes it comes out of nowhere, so there’s no action I can take. Last year I was at a book launch and part of the way through the reading, CRASH, sound effect out of nowhere! There hadn’t been any other sound effects, nothing to make me think that this might happen, so I was completely unprepared. I nearly leapt out of my seat, then sat there for a while twitching and shaking, trying not to scream or cry. I had nightmares that night. But at least it wasn’t as bad as seeing The Avengers: Age of Ultron. I remember almost nothing about that film except that there was a sequence that was just one crash after another, and by the time it was done I was curled up in a ball on the floor with tears streaming down my face.

 

Now, car crashes are pretty common so I suppose one could argue that anything involving a representation of a crash should bear a warning. Personally, I don’t agree. They are common occurrences, and most people are fine a short while afterward. They process the shock and fright, they recover, they don’t shake and cry whenever they hear the noise. I recovered just fine from the first crash I was in, when I was a child. I appeared to be fine after the pile-up in 2005. It wasn’t until the black ice incident in 2008 that I started experiencing flashbacks and other trauma symptoms. For a while I found it very difficult to be in a car at all, but EMDR helped me to get things under control to the point where I can drive and be a passenger. It’s just the noises that still trouble me, but that’s my damage and I don’t think it should be necessary to undermine a dramatic device to accommodate it.

 

Also, not all triggers are as obvious as that. The other one that affects me is the smell of lavender. While car crashes are commonly considered traumatic events with negative associations, most people’s associations with lavender are very positive. It’s a very popular fragrance for bath products or anything laundry-related, and it’s one of the most common oils used in massage or any kind of relaxation treatment. It’s remarkably difficult to avoid, but for me it’s tied in with memories of things that happened while my mum was dying, things people did that I still can’t talk about, even in therapy, because to process those things is too close to forgiving them and there will be no forgiveness here.

 

I control my environment where I can. I’ve got used to checking laundry products and toiletries to make sure I don’t inadvertently pick up something lavender-scented. If I book a massage I request that no lavender be used in my treatment and offer to bring my own geranium oil instead. But there’s nothing I can do to control the outside world, where lots of people like the scent and I can smell it on them. Nor would I want to restrict their right to enjoy the fragrance if they like.

 

A few years ago my husband and I went to see Puppet State Theatre’s wonderful show The Man Who Planted Trees. At one point there is a description of lavender fields, and by means of a beautifully simple effect they waft the scent out over the audience. I saw it coming, only just, and scrambled for the bottle of Olbas Oil I usually keep in my handbag to drown out any other smells. It broke my heart a bit that I couldn’t enjoy that part of the show the way it was intended (though I certainly appreciated it objectively and could see that it was lovely for everyone else).

 

The experience I had at that show always pops up in my mind when discussing trigger warnings. I don’t think it would be reasonable for me to expect Puppet State to have anticipated my reaction. How could they? It would be equally possible that someone might have PTSD responses linked to a particular quality of light, or the type of shirt one of the actors was wearing, or to an uncommon phrase that might have cropped up in the script. If triggers are very specific and personal, any aspect of a show (or film, or book, or everyday experience) might be someone’s trigger – so in order to provide total protection, it would be necessary to list every single component of the production and every word in the script, and at that point haven’t you just experienced the thing anyway?

 

My preferred option is to take responsibility for my own traumas and deal with them myself. I try to anticipate the car crashes in TV and film, and I carry my Olbas Oil to overpower unexpected lavender. And, increasingly, I try to get the better of the triggers. I’m on the waiting list for further EMDR to deal with the car crash stuff, and while I’m getting support from my current therapist I am training myself to be able to tolerate lavender without having a visceral response to it.

 

It’s been a long process, beginning with using CBT to control myself when I encounter the fragrance. Every time I would try to push myself a little bit longer before I blocked the smell out. I’d control my breathing, remind myself that the nausea was without cause, dissect the intrusive thoughts, try not to let myself shake. Later I acquired a bottle of lavender oil and started training myself to handle the scent at its strongest. Most recently I scented my bath with it so that the smell of lavender went wherever I went, and noted how it affected me. I’m almost entirely in control of it now. I’ve overcome the shaking, the nausea, the hyperventilation. I’m aware that I still experience heightened alertness and am quite jumpy when I can smell it. But it’s so much better than it was, and I’m still working on it. Whether I’ll make my peace with lavender to the point where I can have it used in massage I don’t know, but at least I’ve made it to this stage. I’m getting there.

 

Of course, overcoming triggers through exposure isn’t the right move for everyone, so I’m not suggesting that anyone who manages PTSD and may be reading this ought to do the same. It’s taken me a long time and a lot of mis-steps along the way. But I’m glad I’m doing it. I may not have dealt with the trauma that underpins the trigger, but I’ve managed to detach the scent from the experience and will, in time, reclaim it. Whether that’s healthy or not is up for debate, but I don’t know if I ever can have a healthy relationship with those experiences or how long and arduous the journey to get to that point would be. The important thing, as far as I’m concerned, is to deactivate the triggers so that I can deal with the trauma or not, in my own good time.

 

Do I have a conclusion? Not really, sorry. I can’t tell you whether trigger warnings should exist, I can only tell you that I can’t imagine they’d be helpful in my particular case because I’d need to know the thing I’m watching/reading thoroughly in order to know whether it would be triggering. But hopefully this post explains a bit about what it feels like when it happens, what I’ve been able to do to reclaim control and why it’s complex.

 

Enough for now. Whenever I write mental health posts I reach the point where I can’t keep writing long before I reach any proper conclusion. The urge to delete the whole thing kicks in. So I’m going to post and go and work on something else before that urge wins.

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June 15, 2015

Over and Out

By jenbitespeople

 I’ve seen this article doing the rounds on social media over the weekend. For the non-clickers in our midst, it’s a piece by Sarah Hepola about binge drinking and the experience of blackouts. She describes the experience of waking up in odd places, not certain how she got there or what she had done the night before. She talks about the panic, fear and confusion the blackouts could cause, and also about the freedom that went with being drunk. It’s an interesting piece to read from my own perspective – someone who doesn’t drink and never has, but who is no stranger to blackouts. So I thought I’d write a post of my own, what with having a blog and all.

People often seem surprised when they realise that I don’t drink. I don’t make a big deal of it, this one blog post excepted. There are two situations in which it tends to come up. The first is when someone is trying to offer me a drink and seems puzzled (or in some rare cases offended) by my request for a soft drink. I’ve met people who thought I was trying to spare them the cost of buying booze, or that they were trying to get me drunk, or who thought I was somehow being shy. In that case I will reassure them that there’s no issue, I just don’t drink. The other situation is when it’s medical. How many units a week? Zero. Yes, zero. No, I don’t drink at all. Yes, I’m sure. It’s surprisingly difficult to convince a GP that you don’t drink – I saw a GP in my teens who actually accused me of being in denial about an incipient alcohol addiction and it must still be in my notes, because I get asked about it to this day.

I’ve also never taken recreational drugs, which seems to surprise people even more. Not even a single experimental puff of a joint. If I can tell you what it’s like to be on opiates or benzos, it’s because they were administered in hospital.

Now, I realise that all of this is probably making me sound like a total fucking goody two shoes. I’m not. While clubs and parties aren’t really my scene, when I do go out I am quite capable of matching my behaviour to the people around me. I’ve had friends try to take my car keys away from me, thinking I was too drunk to drive because I was so giggly and nonsensical. I can disinhibit with the best of them when I want to.

So why, if I’m not completely uptight and joyless, do I not drink? There are two reasons. First, I absolutely fucking loathe the taste of alcohol. I’ve always been willing to try new things in case I someday find something I like, but every time I take a sip I get an overwhelming hit of ethanol and it’s really, really unpleasant. People assure me that this is what it’s like for everyone and the trick is to push through it and get used to it. But I never did, probably because of my second reason, which is this: I am a control freak.

Yes, I know, plenty of control freaks drink. Not this one, though. And this is where the blackouts become key to my story. Imagine the phenomenon described in that article  – finding yourself in a place you don’t remember going, having to piece together your actions based on what people tell you and any physical evidence you may have left, like receipts and the like. Now imagine knowing that this definitely wasn’t the result of drugs or alcohol. There’s nothing you can attribute this to except possible stress.

There you have my experience. These blackouts, or dissociative episodes, or whatever you want to call them, are bloody terrifying. I had a handful during my teens. Mostly they just consisted of lost time when I was at home, or classes that seemed to skip past in minutes. The first time I became aware that something odd was going on was while I was at uni, and in the early stages of my breakdown.

I found out about it one day when I phoned my parents and they were both furious with me. I didn’t know why, but I soon learned that I had called them the night before, quite late. It was an angry, rambling phone call, during which I said things that I would never normally have said to them. They were upset, understandably, and assumed that I had taken something. I hadn’t. I was certain I hadn’t. The last thing I remembered was heading out with some friends, so I checked with them. Sure enough, I had started acting strangely and had run away from them at some point. Someone had seen me in the Students’ Union using the payphones, which must have been when I called home. Apparently I had yelled at some kids for vandalising a bush and chased them down the street. I have no idea what else I did. I have no memory of any of these things. I just woke up the next morning as if nothing had happened.

After my parents died, during that strange, hermit-like era when I was living in their house, I think I had quite a few blackouts. It’s difficult to tell for certain, because I was living alone for much of that time. I’ve always been somewhat reclusive, and apparently I’m quite good at continuing to appear functional during most blackouts. But there was certainly something going on. Things would move and rearrange themselves around the house, odd things like my car keys being deliberately positioned in the middle of the hall floor, or things arranged in specific patterns. I tried not to think too much about it and laughed it off, calling it “my poltergeist”, but it seems considerably more likely that the actions were mine, just unremembered.

There have been other incidents, some of which frightened me badly. The time when I was on sertraline for depression was particularly bad. There are gaps in my memory that I find quite distressing. There would be times when I wouldn’t just find out what I had done second-hand, I would clearly remember having done something, only to find that I hadn’t – I’d lost some time and just filled in the blanks incorrectly. I had to come off the medication and just hope for the best.

Knowing that blackouts happen to me, prompted by nothing more than stress, makes drinking or taking drugs a really frightening prospect for me. I’ve been out of control too often, and I don’t like it. I have to try to get control and maintain it, to identify why they happen and do what I can to prevent them. The idea of doing something that I know could actually bring about a blackout… nope. Absolutely not.

Do I envy the people who can have a drink or a joint and not worry about this stuff? Yes. Bizarre as it may sound, I envy people whose blackouts have a clear-cut, understandable cause, and systems in place to support them as they tackle any problems they have with that cause. I’m still floundering around trying to figure out where this overlaps with PTSD and where it doesn’t and whether there’s some root cause that I’ve blocked out. It’s confusing and frustrating, and exactly the kind of thing that sometimes makes me wish I could reach for something that would help me relax.

I’ve written versions of this post before and never put them up. Talking about this openly makes me nervous. I fear being judged for it, that people will think I’m making it up or exaggerating or that I’m just insane. As ever, I write this in the hope that if there are other people out there experiencing the same things, perhaps at an earlier stage in their journey and wondering if its just them, they might find it and know they’re not alone. And for anyone who wants to judge me, there’s plenty of material here already, so I might as well just do it. When the bridge is already on fire, no sense in worrying about an extra splash of kerosene, right?

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March 23, 2015

Knowing where I stand

By jenbitespeople

There are some obvious difficulties inherent in living with mental health issues. There’s the apathy, the auditory hallucinations, the need to lock the car door three times. There’s the social stigma and the knowledge that by being open about it I might well cost myself opportunities. There’s the day to day management and constant updating of my CBT skills.

But among the weirdest and more difficult things is accurately assessing the severity of the issues. If you’ve never been “normal” or non-disordered, it’s hard to figure out how far from “normal” you currently are. (The world is full of people who try to say helpful things like “there is no normal”, “everyone’s a bit weird” and “you shouldn’t pathologise emotions”. Well-intentioned, but honestly, not helpful when you’re dealing with mental health problems. Yes, everyone has their idiosyncrasies, but there’s a difference between people’s quirks and actual disorders, and identifying mental health problems is not the same as pathologising emotions.) If you’re trying to figure out when it’s time to get help, you need to have some idea of how far into disordered thinking you’ve gone. Figuring that out requires observation of other people and comparison with them – for me, at least.

The tricky thing is doing this without letting it descend into a Crazy Contest. The point is to keep tabs on my own state of mind, not to prove that I am the Craziest Crazy that ever was Crazed. The difficulty arises from the fact that it’s hard to be objective and dispassionate about my own headspace, and there aren’t many reliable external criteria to help.

When I had my first and worst breakdown, the one where I stopped talking, eating or moving unless forced, that was categorised as Severe. Severe with Catatonic Features, to be specific. What I considered “getting better”, my shrink considered “Moderate”. I haven’t experienced full-on catatonia again, and I hope I never will. (Though just as a side note, this is what I mean about the difference between handling a disorder and “pathologising emotions”. I know what profound sadness and loss feel like, and I know what catatonic depression feels like, and I can assure you that they are nothing alike. What I was being treated for back then wasn’t “having feelings”.)

As of my last assessment, it’s categorised as Mild/Moderate. This is the best the headspace has ever been, so this blows my mind in two ways. First, those terms don’t feel like they do justice to the vast gulf between how I am now and how I was then. It feels like there ought to be at least a dozen different words standing between me and catatonia. Second, if this is Mild/Moderate, then what must it feel like if you’ve only ever experienced Mild? Or if you’ve never experienced depression at all? How does that work? My earliest memories of depressive feelings and behaviour date back to when I was only two or three. I’ve never been “normal”, there has never been a time in my life where I wasn’t this way. There are, apparently, people out there who do not live with depression, and I have no idea what that feels like. I genuinely can’t even imagine what it must be like. I’m fascinated by the concept.

That said, I’m fascinated with other people’s experiences of mental health in general. It seems like everyone has either experienced mental health problems or watched someone go through them at close quarters. It surprises me how many people I’ve met who have been hospitalised at some point. Bizarre as it may seem, the fact that I’ve never had to have inpatient treatment is one of those things which, in my darker moments, causes me to question the legitimacy of my own disorder. The “logic” runs this way: If I’ve never been hospitalised then I can’t have been all that bad, in which case my depression (etc.) is much less severe than theirs. Same thing with suicide attempts, I’ve never been caught in the attempt or ended up in hospital, so my depression can’t have been that bad.

Of course, that doesn’t take account of the fact that when I was catatonic, I probably should have been in hospital. If my mum hadn’t been able to take care of me, that’s where I would have been. Well, in hospital or dead. When I lived alone there was always an undercurrent of worry in my mind in case I misjudged myself and ended up catatonic again before I sought the right kind of help. I’ve always tended to go to ground when my headspace isn’t good, so it wasn’t unusual for me to vanish every so often. If I had slipped, I could have succeeded in starving myself to death. Would I have been far enough gone to merit hospital treatment? Yes. Would I have caused my own death without ever having been hospitalised or having any record of suicide attempts? Yes. So presumably these things are not good yardsticks for severity. They’re not legitimising experiences, they’re just experiences that people might have had depending on their circumstances. It’s a lot easier to end up getting sectioned if you have a disorder that causes you to behave strangely in front of other people. Disorders that manifest in withdrawal and introversion make it easy just to waste away unnoticed. That this could have been my lot still frightens me. That’s the thing I am guarding against.

On the flip side of this, I sometimes read  or hear about other people’s experiences and they seem milder than what I’m used to. I work hard to listen and read without judgement, but it’s an emotional topic connected to a strong fear, and I would be lying if I said that I’d never had a rogue thought along the lines of “Pfft, low moods, that’s nothing. Come and talk to me when you can’t feel anything at all, then you’ll know what real depression feels like!”

This is nonsense, of course Different people experience different levels of severity. I know that. I understand it. That’s why there are different categories. Also, catatonic depression isn’t the only legitimate form of depression. I’m aware of all of this. But when you’re dealing with mental health issues, it’s a constant battle to be taken seriously (both by myself and by other people) and to accept my own diagnosis and experiences as legitimate. When I feel myself slipping and decide to seek help, I feel bad about taking up my GP’s time because there’s still a part of me that doesn’t really accept that there’s a whole realm of depression that lies between “fine” and “catatonic”, and that I don’t have to be unable to function in order to justify asking for help.

This is why I feel it’s important for people to speak openly about their mental health, if they can. The more people there are talking about it, the better equipped we as a society will become to talk about it (I hope). The better equipped we are, the easier it will be to assess our own mental health and gauge how we’re doing. I often wish that when I had my first breakdown, the internet had been further developed. I had access to it and was using it in 2000, but the blogosphere was considerably smaller and it would have been great to have had access to the range of experiences that you can find online today. Future Jen-equivalents, I hope you find this and I hope it helps.

Still, as important as I believe it is, it’s just as important for me to remember that my mental health and dead parents aren’t all there is to me. They’ve been major influences on my life and my choices, and I’ve no plans to stop writing about them, but I think that for my next post I’m going to find a less angsty topic (and by that I don’t mean arts politics, the other major strand to this blog). I’m sure I can do it if I try…

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March 8, 2015

You wanna know how I got these scars?

By jenbitespeople

Most people don’t notice the largest scar on my face. It hides in plain sight. It’s very pale, I’m very pale. But it’s quite long, starting about an inch above my left eye, running all the way up my forehead and ending about an inch and a half past the hairline.

The smaller facial scars are the ones that make their presence felt, because they’re the ones that interfere with the shape of my right eyebrow. It always looks a bit oddly plucked.  This annoys me far more than the deep, pale scar on my forehead.

Then there’s the scar on my left knee. It’s ugly and unmissable – or at least it would be if anyone ever saw my knees. That seldom happens. I don’t have much of a summer wardrobe, living in a place where warm weather is not abundant, but even the skimpiest of my dresses tend not to show off my legs. There’s not much about my body that makes me feel self-conscious, but the scar on my knee does. I hate it.

All of these scars are from the same incident, and they all turn ten years old today.

On the 8th of March 2005 I was involved in a five-car pile-up. I was still singing back then, and I was on my way home after a performance. The crash took place on Queensferry Road, just past the Quality Street junction heading away from town. Having grown up in the north-west of Edinburgh, it’s one of those places that has always been part of the landscape of my life.

At about 23.30, someone swerved out from his side of the road and onto mine. Despite the time of night, the road was busy. There was no evasive action I could take. All I could do was brake and hope.

The approaching car hit me. The car behind hit me. Apparently two other cars hit mine as well, though I don’t know how. My awareness ends with approaching headlights and the thought “I fucking refuse to die here” and resumes in the wreckage, watching blood dripping onto the airbag and realising it could only be mine. My passenger door was open and someone was telling me to stay calm and wait to be cut out of the car.

With impeccable shock-logic, I reasoned that if I didn’t have to be cut out there might be some chance that my car – my Mum’s car – might be saved. So I unbuckled my seatbelt and climbed out. Via the passenger door, because mine was staved in. As I hauled myself out I noticed that my left wrist was probably broken. Didn’t clock the multiple pelvic fractures, though. I staggered around for quite a while, trying to get someone to tell me what had happened and whether it was my fault (at this point I couldn’t remember the events prior to impact), before the paramedics arrived.

The twenty minutes or so that I spent in that ambulance were among the worst in my life. I was bleeding, frightened, in pain – and when the paramedic asked me if they should call someone, I had no answer. I desperately wanted my Mum and Dad, but Mum had been dead for over a year and Dad for eight months. Instead I lay there, trying not to freak out as they strapped me into the neck brace, and wondered what time it was and which of my friends would not mind being disturbed. I knew I was nobody’s first priority. It was an incredibly lonely certainty. I asked them to call the friend I had given a lift to that night, on the grounds that she would probably still be up, then I channeled my fear and loneliness into bickering with the paramedics about how long it would take us to get to the hospital. They said ten minutes. I said that from Queensferry Road to the ERI with a head trauma patient was never ten minutes. I had some vague memory of Mum telling me that ambulances don’t speed or put the siren on when the patient has head trauma, and I knew exactly how quickly you could get to the hospital, whether by staying within the speed limit or by breaking it, thanks to Dad’s tests and then his stroke. In those facts, in that knowledge, there was a little bit of them. It was the best I was going to get. Those poor paramedics…

What followed was a jumbled, nightmarish experience. In that overheated A&E ward I drifted in and out of consciousness. Sometimes I’d come to and someone would be doing something – plastering or stitching me up, wheeling me off for scans, taking blood. They took blood so many times. I was terrified that they’d found the same cancer in me that killed my parents. I had been warned that I might have it too and opted not to be tested. They kept taking my blood and not telling me why, and I was sure that they were making certain before telling me I was going to die. I didn’t have cancer, of course. I’m still here. It was just bad luck that my first couple of vials got contaminated.

By the end of the night, as the shock and morphine began to wear off, I knew that I had been in a crash with a combined speed of 100mph. I had five pelvic fractures, damage to my pubic bone and sacrum, my left wrist was broken and had been re-set, the laceration in my knee went all the way to the joint, glass had been removed from my right eyebrow area, and my forehead had been split open. Apparently my skull was visible, but no-one would give me a mirror. I can understand why, but honestly – how many chances am I going to get to see my own skull? Hopefully not many, but I would have been really interested to see it while it could be seen.

Scar 1

The doctors who treated me expected me to be in hospital for at least a month. I was having none of that. The hospital smelled of nightmares. The last time I had been there was when Dad had his stroke and I spent two days waiting for him to die (which sounds brutal, but we knew about the terminal cancer so swift death from a stroke seemed like a far kinder option). I wasn’t going to spend a minute longer in that place than I had to.

I forced myself back onto my feet and was home a week later. In retrospect, I shouldn’t have done that. I might have avoided some of the permanent damage if I’d stayed in. But… I couldn’t. Not that being at home was much better, in a hastily set-up bedroom in what was usually the dining room. That was where we had laid out Mum’s coffin. To me, it always smelled of formaldehyde. I managed two nights in there before I became convinced that if I stayed there I was going to die too and started dragging myself up the stairs to my own bed. I had specifically promised the doctors I wouldn’t do that, but needs must. I had thought that I’d have someone to take care of me while I got back on my feet, but… well, let’s just say that I learned a few excruciatingly hard lessons about trust after I came home from hospital. I was on my own, negotiating the house with a crutch in one hand, a cast on the other and a massive feeling of being kicked while I was down.

I healed, mostly. The facial scarring, as I’ve said, healed cleanly. The one on my knee stayed hideous, but easy enough to conceal. I never regained full strength in my left wrist, there was some permanent damage to my lower back and my neck, and I was left with involuntary eye movement and deteriorating vision after the head injury. I haven’t needed a walking stick for crash-related reasons since 2007. My confidence didn’t recover, though. I learned how alone I was. I learned a very particular kind of fear. It threw everything I had lost into sharp focus. And even now, ten years later, I can’t stand the sound of car crashes in films and TV shows. If I don’t see the crash coming and cover my ears in time, the trauma reaction kicks in and I start twitching like a fucking idiot and have to fight not to scream.

That’s quite a legacy for someone’s brief fuck-up. To this day, I do not know why it happened. I don’t know whether the other driver was high, suicidal or having a seizure at the wheel. I don’t know whether he was suspended or banned from driving. All I know is that he was male, speeding, alone in the car, and he escaped with just bruises. That’s what I got from the police and hospital staff. I don’t even know whether I should be angry for him or sorry for him. All I know is that something this person did, voluntarily or otherwise, left me with damage that will be with me for the rest of my life. Scars on my face, my leg and my psyche, and I still don’t know how I’m supposed to feel about it.

Scar 2

 

At least I could feel legitimately insulted by the compensation I was offered. Someone – his insurance company? – offered me £440 to compensate me for my medical expenses. I set the cheque on fire. £440 barely covered the amount I had to spend on getting to and from the hospital for cast removal, stitch removal, physio and god knows that else. It did nothing to cover the ongoing physio or my glasses or contact lenses. Those are costs I’ll always have to meet out of my own pocket, because someone drove his car into mine. I could have fought for more, but I was a traumatised 22 year old with no family and no-one who would support me through that process. I just couldn’t deal with the paperwork. I couldn’t handle reliving it and having the validity and severity of my injuries questioned. Dealing with the horrible, arbitrary nature of what had recently happened was enough, and if someone, somewhere was willing to price my well-being so low… fuck them.

Ten years on, I’m not entirely sure why I’m writing this. I feel the need to mark the day, almost to the minute. I need to remember what happened and how it felt, and how difficult it has been to set aside over the years. The reminder of the car crash is there every single time I look in the mirror. Facial scarring is strange. I’m incredibly lucky that it wasn’t disfiguring. It so easily could have been. But even so… it’s my face. Mine. My visual identity. And it’s got this big line down it because someone caused me to get hurt.

I choose to own it. Back in the ghost tour days I used to rub lipstick into it to make it look recent and livid, because it freaked people out. I knew it had the capacity to freak people out. When people do notice it, it’s ghoulish. I went to the release of the last Harry Potter book with my scar proudly displayed because sometimes you just have to make the joke before anyone else does (and believe me, when the scar was still easily visible I heard every fucking Harry Potter joke ever). I part my hair in line with the scar. I refuse to hide it. It’s barely visible, but I’d rather leave it available to be seen than brush my hair over it and look like I’m trying to hide it.

Bizarrely, I sometimes catch myself wishing that the scar had not faded quite so perfectly. Sometimes I wish it had stayed visible so that it didn’t look like I’d made an effort to conceal it. I haven’t, and I never did. The scar is a visual signifier for something I haven’t forgiven or forgotten, something I probably should forgive and forget but I don’t know how, because I don’t understand the event itself. If I could just be angry about it or just know that it wasn’t his fault, I could feel something fairly. Instead I feel nothing but confusion and pain, even now. I would probably have let go of the emotional pain years ago, were it not for the literal, physical pain that accompanies it. I feel the pain, it makes me angry, and all the feelings come flooding back.

I’m not sure I want to let go of the anger, anyway. Destructive and unhealthy it might be, but it’s mine. When I began to let go of the anger regarding the bereavements, what I found underneath was something much more complicated and harder to deal with. I don’t know if this would be the same. It might not be. But if it is… it’s easier to be angry. I know how to do that. I’ve mastered the art of a nice, passive rage that sits below the surface, kept at bay until I need it. Any time it starts to burn a little low, I can look in the mirror and the scar is right there to refuel it. Long, white, less visible than it was, but clear enough. A reminder of 2003 – 2005, and the last of the three events that hurt me badly and shaped the course of my life. The last of the Decade.

Scar 3

(This was taken earlier today. Ignore the facial expressions, this is what we call “resting brunch face”. It’s just that the scar was noticeable, and it prompted this post so I thought I should include it.)

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January 16, 2015

After the detour…

By jenbitespeople

Hello, blog. Long time no write.

I’m still here, I’m still alive, and I’ve been meaning to update for just over a year. So why haven’t I?

2014 took its toll. Well, from October 2013 onwards, really. It’s nothing I haven’t mentioned before, just the usual Dead Parents stuff. Hence not writing about it. Hence the constant desire to write about it curtailed by angst about writing about it. Am I making sense yet? Probably not. This is why I’ve been so quiet.

I was expecting the anniversaries to be something of a problem. Perhaps that was a self-fulfilling prophecy, but perhaps it had to be. As I’ve said previously, I’ve always struggled to balance the desire to move on from the grief with the necessity of making that grief mean something. If the grief means something, if their deaths were truly significant in my life, then the anniversaries had to hurt me, and the more it meant the worse the pain had to be. Self-inflicted? Partly self-inflicted? A natural consequence, but one I need to feel that I could, in theory control so I convince myself it’s self-inflicted? I have no idea. Honestly, I have absolutely no clue how much of the pain I generate myself and how much is an inevitable result of the pain of bereavement. I can analyse, I can guess, but I can’t step far enough away from myself to get a clear view.

However, while I may not be able to get enough distance from myself, I finally have enough distance from the events. At last I can start to look at that period as a whole – which I need to do in order to lay claim to what happened and turn it into something I can use and take ownership of, rather than something that controls me. But it’s something I can’t do without feeling it all over again. Essentially, over the course of 2014 I had a very quiet, gradual and protracted version of the breakdown I probably ought to have had in 2005.

This manifested as paralysis and lockdown, which is typical for me. Back in the aftermath of the bereavements/injuries I would move between periods of being apparently functional and periods of shutting the world out. During the former, it looked like I was coping. In fact it was the lockdowns that were keeping me going and allowing me to process things. Making myself look functional has always been how I’ve outrun emotions and pain.

The trouble with pain is that it’s so bloody overwhelming. I can feel my way through it, learn to understand it and eventually control it, but doing so is all-consuming. I can’t do it and have a social life. I can do it and work, because I can plough all the emotional stuff into my writing. Fictional characters make excellent receptacles for anguish, and they’re great company. Other aspects of my work, specifically the ones involving human interaction, are less easy to integrate. Putting words in the mouths of non-existent people is fine, but conversing with real ones, whether in writing or in person, is harder. They’re a lot less easy to control, and when I’m trying to manage the pain I don’t have much room left over for uncontrollable things.

Which brings me back to why I’ve been so silent here. Firstly, I’ve written plenty about the Dead Parents and the grief here. There’s nothing more to be said. Except that there’s everything still to be said, so much that if I wrote a thousand posts I could barely scratch the surface. It’s futile and/or necessary, and either way it’s overwhelming. It’s self-indulgent and therefore unjustifiable, and/or it’s helpful to other people and therefore more responsibility and consequence than I can handle just now.

I’ve meant to write, and I’ve wanted to write, and again and again I’ve thought “I must write about this”. Then I’ve opened WordPress and found that I couldn’t. This is what I do with emails, too. I know who I need to contact. I plan the content meticulously in my head, then I open Gmail and can’t touch the keys. There’s no point, it’s all been said, or it hasn’t but either way the interaction will take up more energy than I have and it will make the pain worse. I really don’t want the pain to be worse.

So that’s what’s been happening. But now there are things I need to use this blog for, and I’ve started a project elsewhere that will (I think, or at least I hope) let me balance the pain and the output in a useful way. Cryptic? Hell yes, because I haven’t decided whether I’m telling people the specifics of the new project yet. It might just be for me, for the present at least.

Time to start writing here again. I can just about deal with interaction again. I think. We’ll find out. Welcome back to the Scenic Route.

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December 5, 2013

When a belief is not a belief

By jenbitespeople

There will be a lot of things in this post that I’ve touched on in the past, but I’ve never explained the full extent of what’s been going on in my head over the past year.

I’ve mentioned before that it was the 10th anniversary of my mum’s death in October and will be the 10th anniversary of my dad’s in July next year. I’ve written at length about my experiences with depression and a wee bit about ADD and PTSD. I know I have a tag for Schizotypal Personality Disorder so I must have spoken about it somewhere, but I’ve never really gone into it in depth because it’s less well-known and harder to explain. But it’s a factor in what’s going on at the moment (or at least it seems to be), so… here goes. I don’t claim to be an expert on this. I’m just someone who lives with it, and I’ll try to explain what it is, what it feels like and how it’s affecting me as clearly as I can.

Schizotypal Personality Disorder is a schizophrenia spectrum disorder. It involves obsessive rumination, anhedonia, eccentric behaviour, inappropriate emotional responses, magical thinking, social withdrawal and anxiety, strange means of expression and occasional hallucinations. I remember the psychiatrist who diagnosed me, back when I was 18, explaining that as someone with StPD I would never see the simple solution to a problem if there was a complicated one available. Apparently the big difference between StPD and schizophrenia is that with StPD, you can still tell when what you’re experiencing is not reality.

Over the years I have learned how to live with and control my symptoms. Getting the obsessive rumination under control was a huge personal triumph, achieved through CBT and visualisation and relentless discipline. My means of expression changed gradually, influenced by years of blogging. By writing for an audience and reading other people’s writing, I got the hang of how other people sound. I gradually let go of my unusual patterns and word choices (though a few little things remain – read enough of my writing or listen to me talk and you might spot my obsession with patterns of three). I learned how to tell delusions and hallucinations from reality – most of the time, at least.

The difficulty – and this is the really tricky thing to explain – is that sometimes I find myself in situations where I don’t believe my beliefs. Ten years ago, when my parents died, they were the only people I truly cared about. (Failing to form close relationships outwith your immediate family is a fairly typical StPD thing.) Those events planted the seed of a rather unhelpful idea – specifically, that the people I love that much will die. That my love can bring about the death of whoever receives it. The basis for this belief seems to be that if my life were a fictional narrative, that’s what I would expect to happen next.

Now, on the one hand, I am well aware that this cannot be the case. The world just doesn’t work that way. I do not live in a novel. What happened to my parents was statistically improbable, but that makes me the victim of a misfortune, not deus ex machina or a particular stage of my journey as protagonist. My love is not some kind of deadly force.

On the other, I know it is true. I’m talking about the kind of absolute certainty with which I know my name, or that the face I see in the mirror belongs to me. It is this knowledge that makes me feel so bloody guilty about loving my husband, because if I know that my love will cause his death. So I feel guilty and selfish for putting him in danger, and I live every day with the fear that my belief will prove accurate. Every time I come home I experience intense anxiety from the moment I arrive at  our building to the moment when I am actually in the flat and have seen for myself that he’s still here, still alive, not imaginary. This is not rational or reasonable. I should be able to leave the house without becoming convinced that something bad will happen to my husband. I should be able to unlock my front door without my heart pounding in my ears. I talk myself through the rational argument every time. Usually, delusions respond to repeated dissuasion and a certain amount of CBT. This one, however, is very strong and extremely resistant to everything I throw at it. It has not diminished over time. If anything, it has grown stronger.

That’s  a big part of the reason why I’ve been so antisocial this year. I’ve skipped so many get-togethers because I just can’t manage the usual social anxiety on top of this. I’ve always been a little bit freaked out by large groups, but usually I’ve enjoyed hanging out with people on a one to one basis. Not so much this year. This year I’ve been a lot more withdrawn because my head is too noisy, and also because as this belief gathers strength, it seems safest for everyone if I don’t let myself feel too close to people.

That’s a tough one to explain to people. “Sorry, I can’t meet because I’m really busy just now” is a much easier excuse to understand than “sorry, I’m worried that being friends with me will cause you harm so I’m just not doing the interaction thing right now”. I try to explain verbally when I have the energy, but honestly, talking this through takes a lot out of me and it’s easier just to write about it and hope that the message gets through.

The reason it takes so much out of me is that I fear people’s judgement. I know there will be people who look at this and think “well, you know that belief is nonsense, why don’t you just stop giving in to it?”, missing the fact that I don’t give in to it. I fight it every single day, I win minor victories every time I succeed in doing what I want and need to do without letting this stop me – but I haven’t won the decisive battle that gets it out of my life forever yet, and that’s not for want of trying. I also know that there will be people who write me off as completely crazy because I have a schizophrenia spectrum disorder and they don’t know enough about what that means to realise that they’re not unsafe around me. And I know there will be a few who think this is just attention seeking. It’s not. Even I am not masochistic enough to want the kind of attention that anything involving the “schizo” prefix gets you.

I’m writing this partly as explanation for why my 2013 has been quieter and less sociable than previous years, and partly because I’ve shied away from talking about anything explicitly StPD-related here in the past. I write about my mental health because I feel that if someone like me can’t be “out” about it, what chance is there for people working in less accepting worlds than the arts? Avoiding the issue of StPD was beginning to feel like a betrayal of that purpose, and an act of cowardice.

So there you go. A bit of insight into my head and hopefully into StPD as an everyday thing. I don’t feel like I’ve given you an accurate picture of how powerful and terrifying these beliefs can be, but I don’t know whether I can. I’ve been searching for the words for a very long time, and finally it felt like I should just get this much down and see whether the more minute, intense stuff follows later.

Hopefully some of this makes sense to people who are not me.

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October 7, 2013

Adventures in Mental Healthcare: Hope

By jenbitespeople

Today marks the start of Scottish Mental Health Week. As usual, whenever we reach an awareness day that applies to me, I feel annoyed that it’s still necessary. It’s 2013, aren’t we supposed to be sufficiently advanced and well-educated that we don’t make stupid judgements based on sex, age, orientation, race, whether you’ve ever had a physical or mental illness, or any other damn thing that people don’t have a choice in? Wasn’t this all supposed to be sorted out by now?

Maybe it was supposed to be. But it’s not, so for the present I will continue trying to reconcile my understanding of why we need these awareness exercises with my anger at the fact that they remain necessary.

I got involved with this year’s Scottish Mental Health Week unintentionally. I write ten minute plays for Jo Caulfield’s Speakeasy, and it just so happens that tomorrow’s Speakeasy is embracing the Mental Health theme. My play, Hawthorn & Candlelight, is not about mental health issues. It’s a comedy about a book of spells, so I suppose that if you were determined enough you could read it as an exploration of magical thinking and trace its roots in my own adventures in Schizotypal Personality Disorder, but that wasn’t my intention in writing it. I wrote it as a bit of pre-Hallowe’en fun and that’s about it. If my contribution fits the theme it’s not because of the play itself but because of what I am – mentally ill and “out”.

The fact that it’s Mental Health Week also makes me think it’s a good time for an update about my own situation and how things are going. Last time I wrote about this I was struggling to get access to the help I needed – most importantly, someone who could advise me on medication. I finally gave in and played another round of Russian Roulette with the meds, allowing myself to be put on fluoxetine to keep my serotonin levels in check. So far I’ve been fine – there’s none of the nausea I got from paroxetine or the memory loss and anxiety spikes that characterised my experience of sertraline. However, I’m still on a low dose just now. The real test happens in winter. At some point I usually tip from chronic dysthymia into a Major Depressive episode, and that’s when I have to increase my dosage and find out if my body can handle it.

I was also trying to find a suitable form of therapy to complement the drugs. I’ve been doing CBT on my own for over a decade and it’s a particularly useful weapon to have in my arsenal, but it’s not a magic bullet, and I have hit a point where either I need a different kind of therapy or help with expanding my CBT skills. As it stands, CBT helps me to combat depression and it was fantastic for dealing with OCD and StPD. Having got these things to a point where I can manage the symptoms, I now find myself dealing with issues that are more PTSD-related. I really want to get to a point where I don’t have nightmares, hypersomnia and a wide range of triggers that stimulate fearful, avoidant reactions. I want to be rid of the paralysing terror that accompanies the belief that everything I love dies.

Getting this kind of help is, as I have chronicled here, not easy. CBT with community psych nurses didn’t help me, because the CBT they were teaching was all stuff I’ve been doing on my own for over a decade. Eventually I lucked into an appointment with a GP who seemed to understand, and I made a particular effort to let the mask slip. I’ve been dismissed too many times for not appearing to be crazy enough because I can still do things like bathe, brush my hair, dress in a manner that makes me look pulled-together. I can still do these things until I am pretty far gone, because I have lots of practise.

During my first major depressive episode I learned that allowing myself to look depressed attracted attention. I didn’t want attention. I wanted people to stop noticing me, not ask me stupid questions about whether I was all right, to look the other way while I quietly got on with the task of destroying myself. So I wore make-up long after I stopped caring about my appearance. I wore my hair up to disguise the fact that it hadn’t  been washed in days. The way I dressed didn’t change, because at 18 I wore a uniform of black velour trousers, black t-shirts and sweaters. There was no tell-tale day when I started wearing jogging bottoms all the time, because there was nothing in my wardrobe that would allow me to live the cliche. For several months, as I gradually stopped eating and talking and dropped out of one class after another, I still looked like my normal self. Eventually I lost the ability to keep it together and began to look gaunt and dishevelled in spite of my repertoire of tricks, but I held out for a long time. By the time I started to look depressed, I was too far gone to seek help of my own accord.

So now, when I know I will be talking to a GP about my mental health, I make a conscious effort not to conceal the effects of my mind on my body. No make-up. No dry shampoo. I try not to think about the appointment until I get there so that I haven’t prepared what I’m going to say and how I’m going to keep my voice level while I’m doing it. When the familiar feelings of pain and fear arise, I try to let them show. After more than a decade of training myself not to show those feelings, that’s no small task. It’s not easy to bring that stuff to the surface because I never trust that I’ll be able to get on top of it again. But if you look like you’re coping, they assume you’re coping, so it has to be done. After many years of trying to tell doctors how badly I was doing without having to come right out and say it, I finally did. I explained about my convoluted suicide attempts and self-destructive behaviour, told them that even now, when I’m happy and loved and things are going well, I’m also depressed and fearful and every winter I dread that this might be the one where I just can’t take it any more.

The message got through. At last, I got an appointment with a psychiatrist. By this point I had started on fluoxetine, and the psychiatrist advised me that it was probably my best bet just now, which was comforting (if a little on the late side). He referred me on to the psychotherapy department at the Royal Edinburgh, so I finally had to bite the bullet and get over my fear of going there. Previous experience led me to expect a 45 minute triage appointment, during which I would have to try to give a potted account of myself and what I was looking for. Fortunately, this was nothing like my previous experience…

I had three triage appointments in total, all with the same doctor. There was time to give a full explanation of all the previous diagnoses and experiences and life events. The doctor talked me through my options and made some suggestions, and between the two of us we figured out the next step. I’m now on a waiting list for individual therapy to help me work through the PTSD. The down side is that the waiting list is long, so it may well be next February before I start – but simply knowing that the wheels are in motion helps immensely. In the meantime, I know what my options are if things get too difficult around the anniversary of Mum’s death or over the winter. I feel much better informed. And because this is being done on the NHS, I’m not freaking out about how to afford it.

After so many false starts, getting this far is a massive relief. When people talk to me about their own battles with the system, it’s really nice to be able to say “don’t give up, it is actually possible to get help” rather than simply sharing their despair at getting nowhere.

Keep trying. And keep talking. I might not always have the energy to respond to the comments and private messages I get after these posts, but I always, always read them and I always care.

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January 2, 2013

Unnamed Road

By jenbitespeople

Well, happy New Year and all that kind of thing – was it a good one? I’m starting 2013 knackered. I can happily stay up until 2 or 3am on a regular basis, but apparently 5am still causes me to suffer through the following day. I might not drink, but you wouldn’t know if you saw me in the grip of a sleep hangover.

Anyway, now that January has started and the festive season is winding up, it’s time to start dragging myself back into some kind of routine. So here I am at 1.43am, avoiding editing by writing blog posts with Back to the Future on in the background.

Last October I had a play on at the Granary as part of Black Dingo’s launch season. Back then I mentioned that I would get round to telling the story behind Lost Love at some point, and since it’s going to be on again in a few weeks this seems like as  good a time as any. (Obligatory plug details: Lost Love is part of the line-up for this month’s Speakeasy, a spoken word event hosted by Jo Caulfield at the Scottish Storytelling Centre on 22 January. Info about Speakeasy here. Booking for this particular event here. Booking is essential, people were getting turned away from the last event.)

Lost Love was the product of one of my mini-frenzies. I was supposed to be writing something else, of course – a deadline was looming large enough to make it necessary that I write, but not yet large enough to ensure that I wrote the thing I was actually supposed to be writing. The voice of the obsessed SatNav started chattering in my head and all of a sudden I had a ten minute play on my desktop.

When you write a play about a sentient electronic device and tell people it’s partly autobiographical they give you funny looks (and rightly so, I suspect) .But it’s true. As far as I know I  have not yet had a SatNav fall in love with me, nor have I been a SatNav. The SatNav-related bit comes from an epic drive through Central London. I was working on a show at the Rosemary Branch in Islington and one of the props required was a barrel. I tracked one down at the National Theatre prop store, which is near the Oval, and set off to collect it.

Driving in Central London for the first time is an experience. I had no idea how the congestion charge worked and didn’t really want to pay it, so I decided to avoid the charge zone. Unfortunately my SatNav was determined that we were going in a straight line, right through the charge zone, and I couldn’t find a way of programming it to go round the outskirts. Instead, whenever I reached a Congestion Charge sign I would just go in whichever direction felt right, causing my SatNav to tell me off in what I felt was an increasingly judgemental tone of voice. I spent about an hour of the journey yelling “you can’t make me” interspersed with various obscenities at the SatNav. I have since learned how to switch off the voice, meaning I can cheerfully ignore it without getting any backchat.

However, the autobiographical bit is actually to do with driving in winter. The SatNav in the play leads its owner into the middle of nowhere on a freezing cold day. When I say that it’s a black comedy, that’s not just a description of the humour but also of the ice. I don’t drive in winter if I can help it because I’m truly terrified of black ice. I’m nervous enough when I’m walking if it’s slippery out, having broken some bones in a fall a few years ago, but driving… No.

My first assistant directing job was in Forres, rehearsing in December. I was staying in a cottage just outside the town. On the second morning of rehearsals I woke up to find that it was snowing. I got in the car and set off for rehearsal. Less than ten minutes later my car was upside down in a ditch and I was lucky to be alive. I managed to get one of the windows open and climbed out, uninjured apart from whiplash. I counted my blessings and got back to driving as soon as the insurance cheque came through.

It wasn’t until the following year that the shock caught up with me. I had moved to London but was back in Edinburgh for Christmas when I got called in for an interview for a job I really wanted. I needed to be back in London by the next day. This happened at about 9pm, right around the time it began to snow… I slithered along the M8 and M77. The gritspitters weren’t out yet (because for some reason the authorities are always taken by surprise when it snows in winter) and the traffic was packing the fallen snow down.

That’s when I realised what a near miss I’d had up in Forres. Claustrophobia set in as I remembered being trapped in my wrecked car, my windscreen pulverised by rock that had narrowly missed my head. My phone had fallen out of my handbag and I couldn’t see it anywhere. As much as I wanted to find it and call for help, my priority was to find a way out. I didn’t let myself consider the possibility that I might not be able to get out. I didn’t consider that at all until that nightmare drive back to London. Then it all came rushing in, all those thoughts about how I could have been trapped on that quiet road, how wrecked cars can catch fire, how cold it was and how long I could have lasted in that cold, how no-one would have known exactly where to look for me when I didn’t show up, how easy it would have been to have got myself killed. Being cold, alone and having no control… I can’t even complete that sentence. When I try all I get is that squirming surge of anxiety, panic takes over and fills my brain with NO and I can’t say anything more coherent. And that’s after therapy.

Put the two together, my experience of using a SatNav and my unfortunately extensive knowledge of car crashes and icy roads, and you get Lost Love. Black humour and lots of Jen anxiety distilled into ten minutes.  At some point I’ll probably write something more serious about the car crashes, but collectively they’re amongst my greatest traumas. Lost Love let me scratch the surface. First I learn to laugh at it, then later I learn to be serious.

And that leads neatly on to the next future post promise. Sooner or later I’ll look at humour as a defence mechanism. But not tonight, because there has to be sleep at some point.

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November 18, 2012

A long and frustrated mental health post

By jenbitespeople

Creative Scotland has taken over my blog for far too long. I’m still talking about the latest twists and turns in the saga over on Twitter, but the most recent piece of [headdesk]-worthy action took place while I was caught up with the double bill. Besides, Hannah McGill has been well and truly on the case and I don’t really have anything to say that she hasn’t already covered. I doubt I’ve written my last Creative Scotland post, but there are other things I need to write about just now.

So back to one of my other major topics: The Crazy and how to live with it. It’s that time of year. The dawn simulator has been back on my bedside table for a while. Mornings are just that wee bit harder than in summer (yes, even Scottish summer). And after my last self-sabotaging battle with myself, there’s an alarm set on my phone to remind me to take my antidepressants.

I wish it were as simple as just taking the bloody things, but instead it’s a minor skirmish every time that alarm goes off.

You  see, I hate taking antidepressants. I understand why I have to. My body is physically incapable of producing, transporting and absorbing sufficient serotonin by itself. So I get it. If my body won’t do this by itself and it’s a chemical I can’t do without, medication is necessary. But I hate it.  Logically, I understand that this mental illness is a manifestation of a physical problem and that I can’t overcome it through willpower alone. But to hell with logic – the point is that I hate that this is something I can’t control without relying on drugs.

Having established that, let me make it clear that any comments suggesting that I don’t really need antidepressants and could probably just take St John’s Wort or do more exercise or find god instead will not be met with grace and gratitude. I’ve spent the past 12 years learning the hard way that I have to take these drugs. Believe me, there’s only one possible outcome to my not taking them – my mental state deteriorates to the point where I stop eating or talking and start causing myself physical harm.

Earlier this year I had to increase my dosage. The dose I was on was no longer working for me. I could feel the symptoms of depression kicking in again, so I did the sensible thing and asked my GP for a higher dose. She put me on the next dose up. I’ve been round the block often enough to know that side-effects are to be expected and that the best thing to do is just hold tight for a while and see whether they subside. When the side-effects emerged, that’s what I did.

Within a few days of starting the new dose I noticed nausea, increased anxiety and problems with my short-term memory. I persevered for six weeks to see whether these side-effects were just teething problems, but nothing changed. I can deal with the nausea – it’s not pleasant, but as long as I eat little and often and/or suck sweets or sip water, I can manage it. The memory problems were much more of an issue. I’m used to having a rather good memory, but now I find that I reach for information and what I get is fog, or that tasks and appointments are completely forgotten unless I write them down (and I don’t always have time to write them down before they’re forgotten.) That scares me. It’s really unhelpful, especially as I’m self-employed, and it’s really worrying considering that I will probably have to increase my dosage again in future and don’t know whether that will make things worse.

Knowing that short-term memory is affected by concentration and that my concentration has always been affected by increased anxiety, I went to the GP to ask if there was anything I could do to control the physical manifestations of the anxiety. I was given beta blockers, which made me so dizzy I couldn’t stand and then made me fall asleep.

As you can probably imagine, that wasn’t ideal for getting through daily life. I stopped taking the beta blockers and asked to be referred to a psychiatrist to help me find antidepressants that will keep me from being depressed and suicidal but will still leave me in a fit state to live  and work. In the meantime, I was already struggling with self-destructive behaviour patterns. I got married at the beginning of the summer and found myself caught up in a massive internal battle between my newfound happiness with my husband and the depressive part of my brain that tells me I’m not allowed to be happy and that everyone I love dies. (Yes, that is what my brain is like even when I am taking antidepressants.) In my infinite depressed wisdom I decided the drugs weren’t working so I wouldn’t bother taking them.

Well, that worked out predictably badly. My mental state deteriorated, I found myself relying more and more on the façade and increasingly scared of being around lots of people. I did a bit of self-sabotage. Then finally the sensible bit of my brain remembered that I’ve done all this before and that it might be wise to take my tablets. Just for a few days. So I went back on them and voila, the greyness started to retreat… taking my short-term memory with it and leaving anxiety and nausea in its place.

After that I began trying to work out a viable pattern. Halving the dose doesn’t give me enough to keep the depression fully at bay, but more than half lets the side-effects run riot. Taking one tablet every two days is the same as halving the dose. My next move is to re-time the alarms on my phone and try one tablet every 36 hours rather than every 24.

I also went back to the GP for something unrelated, but while I was there I asked how my referral to the psychiatric department was coming along. The GP looked in my notes. Nope, nothing there about a referral to see a psychiatrist – just some stuff about my time with the community psych nurses. Why, did I want to go back for more CBT with them?

No, I damn well didn’t. If I want to do CBT worksheets (which I don’t, because the way I learned to do CBT was much more free-flowing and didn’t rely on worksheets as if I were still in primary school) I can do that by myself. I can certainly do it with a hell of a lot less judgment than I encountered from the two community psych nurses I saw before deciding that this really wasn’t for me – all they seemed to want to do was contradict my existing diagnoses and do those bloody worksheets. (Forgive me if I don’t give much credence to their contradictions, but I’m more likely to trust an actual psychiatrist who gives a diagnosis based on considerable observation and proper assessment techniques than a psych nurse who bases it on a five minute conversation and the infallible logic and clinical analysis that says “you couldn’t possibly have had a personality disorder at 18, that’s far too young”.)

So no, there will be no more psych nurse visits for me. Perhaps there are excellent psych nurses out there, but I got burned twice in quick succession. Also, CBT is not the answer here. CBT helps me with day to day management of my mental health, but it does precisely nothing to cause my body to produce, transport and correctly absorb serotonin. It’s the drugs that do that, and it’s the drugs that are causing me problems so I need to talk to someone who, you know, knows about drugs. GPs are barely trained in psychiatric medicine, hence my request for the referral in the first place.

I explained all this to the GP who told me that she was new to the area and didn’t know what was available, but she’d find out and let me know. To her credit, she did – but her letter was deeply disheartening. Apparently my options are 1) go back to the psych nurses for more CBT worksheets, because somehow that’s going to achieve something and not just waste resources that might actually benefit someone else or 2) go to a private clinic for which details were enclosed.

I checked out the private clinic. All it offers is psychotherapy. I have found psychotherapy useful on many occasions, but this time I do not need a therapist to talk to. I need someone who can advise me about medication. A psychotherapist cannot do that. A psychologist cannot do that. Who can do that? A psychiatrist. I’m not asking to see a psychiatrist because I think they’re higher status than psych nurses or psychotherapists or because I want preferential treatment, I’m asking because they are the people qualified to do the thing I need them to do.

So realistically, my options are 1) continue with the medication and see how long it takes for me to get myself into trouble for forgetting something important or simply being paralysed with anxiety and unable to do things, 2) find a private psychiatrist and hope against hope that I find a good one first time because at their hourly rates there’s not much room for trial and error, or 3) come off the meds and see how long it takes for me to deteriorate to the point where I am hospitalized, because at least there’ll be psychiatrists in the Royal Edinburgh. That last one really scares me. So far I’ve always managed to avoid being put in hospital. Even first time round, when I absolutely couldn’t take care of myself, my parents looked after me at home. Even last time round, when I was breaking my own bones, I only ended up in general medical. It’s unknown and I’m scared of it, and it would be the ultimate confirmation that my mental health is not under my control. And the path to get there is really horrible and involves the risk that I’ll succeed in doing myself permanent or terminal damage before I succeed in finding help.

I’m not particularly keen on any of these options, but most of all I’m frustrated – not just by the lack of care available, but more than anything else by the fact that the GP doesn’t appear to know the difference between psychotherapy and psychiatry. This is one of the biggest and most exhausting obstacles that you face in dealing with the Crazy. The GP is your first port of call, and even if you can get them to believe you (easier with depression than with just about anything else, but still tricky) it’s a real struggle to get access to any help. You might be lucky and win the antidepressant Russian Roulette where the GP prescribes you whatever’s cheapest and it either works for you or it doesn’t, but if you lose, my current situation is about the best you can hope for. I don’t know where this will end and all I can do is hope I don’t lose too much along the way.

The option I choose, unsurprisingly, is to start looking for a private psychiatrist and hope I can find one who isn’t charging £300/session. I have to keep reminding myself that while the illness is forever, psych sessions are not (because, guess what, I don’t like them either – not a fan of anything that suggests I can’t deal with this entirely on my own). All I need is long enough to get advice and a new prescription. I’m very good at monitoring on my own and following up with GPs. All of this is about making that very first step. I wish it didn’t have to be the most difficult and disheartening step of all.

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September 30, 2012

Story time!

By jenbitespeople

A couple of weeks ago I went to my first Outside Thoughts event. It’s a simple format. Short stories are selected and given performed readings which are then made available as podcasts. Very straightforward, very well done.

One of my stories, Old Woman with Masks, was selected for the September event. I was delighted by the reading (of which more below) and by seeing my story in such excellent company. The standard of the writing was very high (read: I frequently felt outclassed). Podcasts from the evening are being released one by one, and I’d really recommend following Outside Thoughts on Facebook so you get notified when they’re available. Especially because the next one that’s due to be released is a real cracker – one that you’ll identify with if you’ve ever been chatted to by some random weirdo on a bus…

Anyway, enough about other people. My story was written when I was 22 – I was still walking with a stick after the massive car crash, just past the first anniversary of my Dad’s death, coming up on the second of my Mum’s , still feeling like I was living on borrowed time because I was on cancer watch myself. It was a hell of a time. I wasn’t writing much, because, as I’ve discussed here before, I was too deeply submerged in the trauma to make much sense of it yet. I could write, by which I mean I could construct things competently,  but I couldn’t yet get anywhere near the things I needed to write, which meant that things didn’t quite ring true to me. When writing doesn’t ring true I quickly lose interest, whether as writer or as audience.

Old Woman with Masks was a breakthrough piece for me. It was the result of a writing exercise in a short story class – I was given a prompt to work from, a postcard showing James Ensor’s Old Woman with Masks. The figure in the painting began speaking to me straight away, and I’ve loved Ensor’s work ever since. He loved skeletons, I love skeletons, it’s a match made in… somewhere.

When I got to Outside Thoughts and saw the lady who had been cast to read my story, I was a bit concerned. Pam Tibbetts, I thought, looked too young, too stylish, too sophisticated for the humdrum, stifled character I had written.

And then she began to read, and I was instantly won over. By the time she got a few paragraphs in, I was utterly convinced that this was the way the character in the story looks and sounds in her own head. Pam did a fantastic job, and our chat afterwards was lovely. I love it when performers can take my view of a character and turn it on its head, especially when it’s a character originally of my creation.

You’ll find the story here if you’d like to have a listen: http://outsidethoughts.com/wp-content/uploads/2012/09/Episode-Six.mp3

Old Woman with Masks – Ensor

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