My Drink and Drugs Heck- Being Off Medication, Out of Therapy and Back to Work.

I meant to write my therapy tales as a weekly series, but it ended quite abruptly. Not for any bad reasons, but because my therapist was off to Peru (!) and wanted to finish the sessions before he left- which would involve squeezing a few into a week, which was the week before I went back to work. I would rather have spent time with my son than with the therapist, so we had two more sessions and left it there.

Did I find it helpful? I’m not really sure. There were more talk of trauma but a lot of it was just going through the self-help resource website. And the trauma is a whole other thing, so it picked at those threads a bit and left them dangling. My panic attacks have reduced but they often do when I’m incredibly busy, and I still have my horrible intrusive thoughts, but what can you do? (Except more therapy!)

I’ve also finally gotten off Quetiapine, which means I’m now medication free for the first time in 14 years. Yep, I’ve been on various brain potions since the tender age of my brain still developing, and that thought slightly horrifies me. I literally have no idea who I would be without medication, and I will never have the chance to find out since my brain is most likely permanently altered by them. Hooray! I can pretty much chart my life with various medications- 16: carbamazepine, 17, olanzapine (and becoming huge), 19-22, Lithium and Depakote, with various antidepressants and antipsychotics added, 22-28, on and off Lamictal, 22-30 antidepressants in low periods, Quetiapine. My Drug Heck.

Quetiapine was the last medication standing and the one I’ve found hardest to come off due to being dependent on it for sleep. My psychiatrist has utterly denied it causes a) weight gain and b) sleep dependence. She almost dared me to come off it, saying it didn’t have any withdrawal effects (I’ve almost torn my skin off with itching when trying to get off it before, taken a fork to bed where I’d lay awake for a week), and I can’t resist a dare, so I did. I can’t take Quetiapine if I need to do baby night duty which I would do twice a week so Robert could sleep. One night I just didn’t take it the next one. Instead took some promethazine (an antihistamine) and put on my sound machine app to sleep, and it worked. Promethazine has mitigated the worst withdrawal effects but i’ll need to get off that, too. I had gotten down to 75mg of Quetiapine which is why I think it wasn’t so tough this time. In the past when I’ve withdrawn I’ve gone mental fairly quickly and ended up back on it. But it’s been almost a month now and I haven’t had to call the police because I thought there was someone in my house wanting to kill me, so I call that a success.

I don’t feel hugely different. I tend to get quite down this time of year, and I am a bit. My brain is a bit more buzzy and detuned but I can get out of bed in the morning which is such a difference. My gorgeous human alarm clock helps, but even without his glorious gummy face I think I’d be much better. I haven’t been late to work once since I started back, when I used to be late every day (I’m late to my own time so I can leave by 5pm, but that’s transport rather than me).

As for being back to work- there’s a whole other post in there, about how it feels being a working mother. Lots of emotions, guilt either way, when I am at work and when I’m not. I’m only in for 3 days at the moment because I have a lot of leave to use up, but I’m fairly apprehensive going back full time in the new year because I will pretty much never see him in the week. My awful commute means I often don’t make it home to put him to bed, and I miss him terribly. He’s such a beautiful wee thing, in a lovely stage where he’s a real, proper little person. He’s crawling everywhere, chasing the cats, laughing his head off all the time, babbling (lots of, “mamas”, but I know it’s just babble right now), loving being read to (he brings you a book and puts it in your lap to read)- just an utter, utter joy.  It’s nice to be amongst adults at work, I have some excellent friends at work, and I’m lucky to have a job I love and an understanding workplace. I would probably go mental being a stay at home mum, since I’m an introvert anyway and work forces me out. My social skills totally disintegrated when I was off work for four years. The baby is incredibly sociable, he seeks people out, smiles at everyone, makes friends everywhere he goes, and I’m not great at getting out when that’s what he needs.  And it’s not healthy for him to just be my life, nor I his. I want to set a good example, and I’m glad he’s growing up with his dad being at home, to teach him, well, so many things, but one thing being that women aren’t handmaidens. And I know there is drudgery and frustration (a lot of the latter, since he’s so frustrated himself with being a baby), and it is good to get a respite from that so I don’t mind it so much.

It feels almost unfashionable to say this, to not don my power suit and sing Eye of The Tiger. But I really enjoy being with him, much more than I ever expected to. He’s with his dad, so that’s great (we can’t afford childcare, and Robert quitting work made sense) but I’m always worried about how Robert is coping and feeling, too. I feel a bit like I’m letting everyone down, and I’ve got a case of imposter syndrome going on with work, my confidence is in bits. I’m sure it’ll get better and I’ll settle in, navigate the space between, but I had a bit of a cry at the station earlier after missing my second train, so it had taken me two hours to get home.

To this face. I mean, c’mon. You’d cry too.

(PS, I don’t smoke anymore either. Pass the yoga mat)

Family.

Yep, I’m fat, have scarred arms and an incredibly happy son.

Meeting Sugar the rat!

He saw an alpaca for the first time.

My body comes with a trigger warning – Self harm and stigma

Hello!  I wrote a blog for Mind on self harm,  stigma and conflicting messages.

“Stigma” has two meanings. One is religious- they’re the literal marks on the hands of Christ at the crucifixion, and then bestowed upon those whom were holiest- and by extension, those who suffered the most. The other is social- a mark of disgrace. Self harm is both. It is highly stigmatised in society and within the health system, and it is a mark of suffering.

Suffering only has cache if it’s quiet, or, “dignified”. If you make people uncomfortable with your suffering, then there’s stigma. And therein lies the rub.

How do you combat stigma on something that makes other people uncomfortable?

How do you say people who self harm should be treated with kindness when their bodies are seen as attacks on others, to say that self harm shouldn’t be a problem hidden in the dark, when we do exactly that by not allowing representations of self harm?

I just have scars now. They’re very noticeable but also very faded.

Recently, I had a baby. In the postnatal ward, a midwife wrote that I was sitting on the bed holding my baby, “scars on arms”. That’s six year old self harm scars, as relevant to my medical history as a broken leg, and yet so very present, because they were, on a hot stuffy ward, visible. That’s what I was reduced to- “scars on arms”, the loving arms holding my newborn son, the arms of a new mother, a person, exhausted, elated, and ordinary.

If you’d like to rest the read,  it lives here.

Therapy Tales No. Etc- Death and Trauma. Fun.

Therapy is ending soon.

Losses, fears, love- that’s basically it. Losses of things I loved- including animals (I know pets die, but mine in sudden, cruel ways I can’t go into here but which haunt me) and people. They all died lonely, premature, unfair, painful deaths. As soon as I really understood what death really was (which happened when I had another loss- my friend who killed herself when I was 15), I have been completely heartbroken ever since. Of what life is. Of feeling. Of finality. Of memory. I can’t bear it, any of it. That’s when the fear really started. I’d always been afraid of my parents’ death, i obsessed over it. But that was my first big loss, of someone I’d seen so recently, so young, so similar to me. We were all steeped in bullshit pop music mythology, playing with self harm. But she died. Alone. And I was unforgiven for something. I never got to explain or say sorry. And she died. Died. Death. Forever. My first cremation, too.

Memory is important to me. Memory is evasive to me. I have convoluted memories of my own childhood.  Different from my siblings’ because we’re different people. Everything is kind of mixed up, muddy. Then my own brain conspired against me, and I don’t remember a lot of my periods of illness, or the life that existed, inevitably, as life does, within them. And I had my own fractious relationship with the truth when I was young.  When I look back I realise it was because I found it so hard to be living the life I had, so created another, not even one that was easier, but one I felt could justify the pain I was in without ever being honest about what was really causing it (it still feels churlish and trivial, and now I am at the other extreme of exposing honesty).  Other people have memories I don’t, largely negative and embarrassing. My own bad behaviour haunts me not just because it hurt those it was directed to (or caught within), but because I know it has become part of the memory arsenal, that chorus always waiting to be summoned, or to butt in, uninvited, and to hurt. And I hate that. I don’t want to be someone’s bad memories. Maybe if I can be better now, I can replace it or erase it? And all I want is to give my son happy memories. Robert says I’m morbid, which is true. He keeps us in the present- he thinks, “experiences”, I think, “memories”. Already living in the past tense.

Memory is all we have, really. In the end, if we’re lucky, that’s all we have. Since my dad died I have dug deep and cling to the good memories I have of him. Further and further away. It’s hard to remember happiness. It’s not the visceral gut punch of despair, more the balloon in your hand that drifts away, bright and then small and smaller. Physical pain is hard to remember (I couldn’t describe now what my contractions felt like, even though I know they hurt), but emotional pain recalls itself constantly. So I often only remember the bad things clearly (and how bad they were), and it feels like they just happened. How jealous I am of people whose parents weren’t like mine and who they went out to lunch with and they didn’t die like my dad did. Even those who did die but in ways that people had some sympathy for (alcoholics dying, lowest of the low, fuck their children, the way we were treated by the medical staff, my baby brother and sister, fuck them forever and forever for it, for every person afterwards who turned their face away from me),  I have to unfollow people on Facebook posting happy pictures with their parents. Out at lunch! Having drinks! Doing normal things.

Memory is the twoheaded monster. My memories of my dad are awful, Sometimes they engulf me and I feel like tearing my skin off in agony that I can’t go back, can’t change something, can’t intercept this awful image and make it different. That was it. And his memories. I think that’s perhaps worst. HIs life which he didn’t deserve. That he was so desperately unhappy. That he died like he did, and that I knew he was afraid of it. And there are tears pouring down my face as I write this. To be afraid without comfort. Without hope. I wanted to be there when he died to be a hand or a face or a word, and I wasn’t.

Me being there wouldn’t have changed the outcome, he would have died anyway. But I wanted to do something, anything.

My friend Brendan died not long after my dad. He was an alcoholic too, was trying to recover. He died of an accidental overdose and my last communication with him was a voicemail he left on the Monday before he died asking me to meet up, saying he was nearby, just passing, are you in? get in touch, and I was so up my own fucking selfish arse I never did and then he died.

In therapy we talked about safety behaviours and my big one is having my phone on me and being always contactable. I have a three hour commute to and from work and most of it is underground. I went for a rare night out on Tuesday and had a panic attack on the train as I visualised (fear not feelings etc, but it felt like a promotion, it felt like destiny), Robert screaming over our baby, screaming and screaming and I wasn’t there. That if he died I wouldn’t be there. What would his last memory be? Be held, be there, be loved. Not alone.

(Howl)

This is hard to write. I’ll come back to it.

It’s also about fear. I used to have nightmares about my dad dying from his drink. But he did anyway. It happened even worse than I screamed about. So why should I trust my fears aren’t real? That the worst won’t happen? It did. All the worst fears I have (dying myself is a worst fear that will inevitably be true, but I fear dying young, leaving my baby, Robert dying, my baby dying, my mum being unhappy and dying) came true so why not these? It’s hard not to take my anxieties as facts. They happened.  And with Robert and my baby in particular, who are my husband and my son, I love them so fiercely, I think, my love must insulate them from suffering, from death. But it doesn’t and it won’t. How can I ever accept that? I know it’s a childish and possibly a bit narcissistic but there it is. When Robert has the slightest bit of discomfort, my refrain is, “What can I do? How can I fix it?”

We talked about my intrusive thoughts which often take the form of, when I’m speaking to someone, imagining them dead. And realising they have the same expression, that I am just superimposing my dad over everyone’s faces, just reliving it constantly.

We didn’t even get on that well when he was alive. We had some beautiful moments, a lot of understanding, and he was a good person. But I often hated him for what he put us through. I used to fantasise about him falling downstairs and breaking his neck just so he’d shut up. Stop shouting. Stop drinking. Then we’d be free. (I hate this freedom. I hate myself).

So the therapist talked a bit about trauma and how events can be too big for the brain to process so they never become memories. They’re always happening instead. A sort of PTSD. And how if you break them down they can be processed and become memories and stop being so present. I’m skeptical. I have some extra sessions before we quit but feel like we’ve pulled a thread and I want the jumper back. And I don’t want to do the homework. I don’t want to write it all down. I want to keep pushing it all out. I don’t want to break it down. I don’t want to break down.

I cried a fair bit after that session and Robert gave me a lot of hugs when I came home. And then abruptly I just stopped talking about it, as I do, Silly, trivial, depressing.

Yeah.

(Stay with the feelings)

CBT Tales- session 1 and 2

Hello! I promised to update you on my therapy tales. I had my first session 2 weeks ago and it was so uneventfully boring I didn’t really have much to say about it. It was just going over what we’d be doing. He said a few times, “you fit the model so perfectly”, which I gather was meant to be reassuring but irritated me somewhat. I don’t want to fit any models but of course, we all do in varying ways. Especially us mental health bloggers who literally define ourselves by the set of symptoms we fit that all adds up to a few words on a doctor’s monitor and our entire lives.

There was a lot of diagram drawing on how thoughts and feelings and actions all interact. Talk of safety behaviours, and my biggest is keeping busy all the time, mostly by fucking about online, never letting that thought creep in, having my phone glued to my face until the very second I fall asleep. And it doesn’t work, because in the second afterwards, panic creeps in. And I have an awful tendency to use my phone to look up the things that scare me- cancer, death, cot death, death, death, more death.

Session 2 was yesterday. I wrote this for A Day In the Life, a website which gathers the stories of a day in the life of someone with mental health difficulties. You can submit yours too over at A Day In the Life. The stories are anonymous but I don’t mind outing myself for the purposes of this post.

26 August 2015

Today is Therapy Day. I had about three hours sleep, which isn’t good on Therapy Day. In the days before my baby was born, my medication (Quetiapine) would make me sleep for twelve hours straight. Now, with an internal Mum Radar activated, I wake up when he does (multiple times a night), although I’m pretty uselessly doped up from drugs and it’s up to my husband to feed him. The one time I tried I dropped the bottle and spilled milk all over the floor, mumbling dream talk, his crying from the end of a long, dark tunnel. So it’s pointless lack of sleep, but lack of sleep nonetheless. The baby, now five months old, has decided that 6am is a brilliant time to wake up, so I’m up too.

Despite being up from 6am, I’m still late for therapy. The hours in between are lost in a haze. I eat, too much, to try and muster some energy. A jam bun and some toast. In my sleepiness, I’ve forgotten my homework and worry all the way on the bus that the therapist will be pissed off at me for it. It’s just CBT- I say, “just” because it’s not the kind of therapy that plumbs your heart like a dentists’ drill. It’s functional, rigid, and thus requires concentration I can’t summon on so little sleep.

This is only the second session. The focus is on my anxiety about death. Or, as we find during the session of comparing, “Theory A to Theory B”, the focus is on my anxiety about my anxiety about death. The problem, the therapist says, isn’t that we’re all going to die. That’s true and has always been true. It’s that my anxiety about it is controlling my life. So we go through what happens when I feel anxious. About intrusive thoughts and how we shouldn’t try to control them. The more we try to control them, the more we think them. The aim, he says, is to accept them. To let them intrude.

Towards the end of the session he says we’re going to do something which may make me have a panic attack. It’s to feel where my anxiety is, to hold an image in my head and to focus on it. I try, but all I can focus on is the ticking of the clock coming to the end of our truncated session. I try to hold an image of myself panicking but nothing really happens. He then talks about how the more we look at an image, the more our mind will demonster-fy it. It might become interesting, comical even. I’m not finding this to be true, but I’m left with the instruction that the next time I get an intrusive thought or feel anxious to stay with it, examine it, and not try to suppress it. Good luck, me.

I leave and wander around the shops, thinking of lunch. I’m trying to treat these sessions as little holidays from my life, and take an hour afterwards to drink coffee or eat before I return to the baby, leaving whatever was in therapy scattered along the cafe tables. I get the bus home and exhaustion floors me. I can barely hold my head up and resolve to go to bed when the baby does. We’re all tired today, we forego any attempt at dinner and eat burnt creme brûlée that Robert impulsively bought from Tesco.  I take my medication just after I put the baby to bed, and let it drag me into the blackness of sleep by 8pm. He wakes at 10.30 and I do too, stumbling with my pillow into the spare room while my husband feeds him. And then back to sleep. It’s just like the old days- I slept for 12 hours.

First therapy appointment…

…is flipping tomorrow! That was quick. I was hoping for the traditional 18 month wait. Wish me luck.

Therapy Tales Part 1- So You’re Terrified of Death?

(If you’re wondering where my previous post went, I have made it private as I’ve found this to be true. Thank you for all your comments and encouragement!)

So, I’m starting therapy for death anxiety (my medical diagnosis that led me to it are generalised anxiety disorder and panic disorder but I prefer to think of them as ARGH).  Expect this series of posts to be even more introspective and self obsessed than usual, and for this blog, that’s saying something.

Two years ago (christ), I wrote a post called, “When Fear Becomes Phobia”. It described my ARGH FUCK panic around death and deadness, and how my world was getting smaller and smaller because of it.  Last year, I went to the doctor and asked for help. She was so sympathetic that she made me cry. Saying what an awful thing to carry around with me for 12 years (14, now) and she referred me to therapy. I found out I was pregnant, had an assessment and things didn’t go any further because I was suffering such crippling morning sickness that the 40 minute bus journey to the appointment was 1 hour 30 minutes because I’d have to jump off twice to vomit. Later on in pregnancy, I dispensed with such courtesies and just huffed up all over my lap, or into a friendly plastic bag.  Pregnancy was also pretty distracting- all my anxieties were focused on that, and I didn’t have the mental reserves to panic about death anymore.

My panic has returned, as it does. It’s not constant and strikes at night when I’m trying to sleep (and flip, I need my sleep!) It doesn’t disturb anyone because I sleep in the spare room (Robert does night feeds due to my medication). It means it’s quiet, private, lonely. It comes and goes, ebbs and flows.  It’s probably unsurprising. I had a baby, then I lost my grandmother, and it was my dad’s anniversary.  Catholicism ritualises death in a way that’s both comforting and horrifying. It makes you look at it, it makes an object of it.  She was in a coffin in the sitting room that my dad’s coffin was in, for days, with the same yellow, unnaturally smooth, chillingly cold skin that you have to touch to say goodbye. Their coffins, and every childhood Christmas. These things bring death bubbling back to the surface of your mind. It’s hard to close it out when you’re trudging up a hill behind it. Robert’s grandmother died the month after, and her funeral was like a trip to Argos. Closed, quiet, scripted, burned. I prefer the visceralness of Catholicism, even if it haunts me. It does at least give death, and life, some gravitas.

So, I’ve been referred back to therapy for it. My psychiatrist initially wanted to increase my medication but I refused. This feels existential, albeit obsessive. I’ve often been able to distract myself and try to be less up my own arse, but distraction is tricky and I’m introspective generally. It doesn’t need to be medicated away- that just makes me feel worse.

The assessment happened pretty quickly. A chat over the phone, which gave me a sense of pride that I didn’t have to list a litany of other issues. I haven’t self harmed in six years, my bipolar disorder (if I ever had it) is pretty well controlled. I wasn’t depressed, wasn’t struggling otherwise. I’ve come quite a long way. I knew what they’d recommend- CBT (*spits*) but I’m willing to give it a chance.

The therapist is called Sean, which means the assessment didn’t entail the usual 45 minutes of tuition in how to pronounce my name. It’s high intensity IAPT (Improving Access to Psychological Therapies), so the sessions aren’t at the mental health team (thank bollocks, I used to work at my local one), but in an unassuming house with comfy sofas, pot plants and James Frey books that I had to stop myself openly guffawing at perched proudly on the Ikea shelves.

He asked me what I wanted help with so I explained. I forgot to bring the questionaire they sent me so went through some of it there. My depression score was low, as I knew it would be. People tend to assume I must be suffering from depression if I’m having panic attacks and anxiety.

Au contraire.

Depression is both a mortal enemy and an enemy of mortality. For me, it is ageless, timeless emptiness. It tries to kill me, and it kills the thing inside me that makes me afraid of it doing so. I want to die when I’m depressed.

So when I’m not depressed, I’m scared of that. It’s like being held under water and a peaceful acceptance of what it happening envelopes you, until the final second, and you kick, you convulse in order to be free, to be alive, to throw off the aggressor and then relive over and over at how close you came to drowning.

I do sometimes feel depressed because of the panic. I feel frustrated and angry with myself that I have panic attacks. I feel frightened and distressed by some of the intrusive thoughts I have (like when I’m speaking to someone and suddenly an image of them dead flashes into my brain, with hallucinatory vividness) and sometimes they make me feel like I’m going mad. But depression and this panic don’t come together, and that’s a big massive pain in the hole. The panic tends to be the worst during the happier periods of my life. I’m happy, hurrah, and then my mind goes, “This will end it, all of it, everything, and because it will end, this is meaningless, you won’t be here one day, any day, none of them will” and that’s just BLOODY FUCKING GREAT isn’t it. I don’t want to die, ever, because I enjoy my life. I’m essentially a happy person who wants to see what’s going to happen.  I want to be standing at the end of the universe with Robert and Oisín watching supernovas and planets and the sun.

(Rest your head)

(Close to my heart)

(Never to part).

Maybe it is partly a coping mechanism, the fear. Like pinching yourself.

He asked me if I had other anxiety- I do, social anxiety, but I’m dealing with that in my own way so I didn’t want any help which he accepted (and I think it’s tied up in this anyway).

Two things were said during the assessment that made me willing to continue. One was something stunningly obvious but that I had genuinely never considered. The therapist said that my kind of anxiety is, “idiosyncratic”. It’s not a common reason people come to therapy. That floored me. “Doesn’t EVERYONE feel this way?” I said. No, apparently not. At least, not to the degree they end up in therapy. So, is it that this is such an ordinary fear we live with it and are in denial, or am I the odd one for being periodically consumed by it?

Another was asking me where I think it came from. Nobody has ever asked me that before, and it’s not something I’ve thought about. The worst of my panic began when I was 15. That’s when it started flinging me screaming across the room. “Is that when your friend committed suicide?” Yes, it was- but the panic attacks started before then. Robert (who I first went out with when I was 14), remembers my panic on the phone, but it was more contained, and I was easier to comfort and distract.

It started well before then, when I was about 7 (?). Both my parents had mental maladies. I felt like they were going to die and I was terrified of it. I became aware they wouldn’t be there one day and I feared all the time it was the day. I used to pad into their room at night to check they were still breathing, then pad back and lie awake in the moon (just like I do now with the baby!). I realised I was going to die too, and sometimes would wake up screaming.  Death felt close, ever present, non abstract. I could only perceive it in my childish way, but I never felt safe, and I never have since.

Of course, that’s just a bit of it- I might be wrong, but I had never connected the two things before. I had a massive resurgence after my dad died, too, which is natural. But it wasn’t so much his death as knowing that he feared it. That kills me, still. I hate that he was afraid. If I could do one thing in my life, one magical thing, it would be to take that fear from him before he died.

He asked me what I wanted to get out of therapy. I don’t know really. Not to have panic attacks anymore. To be able to watch/read/listen to anything again. Not to have to ring in late to work because I’ve disintegrated at a funeral procession. To fall asleep. To be able to think about Oisín’s future. At the moment, I’m too scared to talk about it, think beyond tomorrow, in case he’s not here for it, or that I’m not. I’m petrified of something happening to him, and feel superstitious about it. It’s a loss I know I would never, ever recover from, be able to go on living beyond.  Pregnancy should have taught me the futility of this- when it seemed like there was bad news at the 20 week scan, my anxiety didn’t protect me. It didn’t cushion it, it didn’t make anything easier.  I want to be able to talk to Robert about him riding a bike, or going to school, or falling in love. I want to be here and present in the moment without thinking how it’s going to end. That it is. I want to be able to sleep without hours of panic beforehand. I want to be able to not feel regret about not living if I do die tomorrow. When I’m going through anxious periods I always feel mildly dissociated, not here. I don’t want to feel that way anymore. I don’t want horrible flashes in my brain anymore. I don’t want my coping mechanism for the feelings of helplessness and inevitability to be nihilism, as it means I make unhealthy choices (like smoking, which will actively shorten my life, and thus leads to more panic attacks). I want to be present for myself, for my child. Life is so brief. And it is all.

He said that this will involve some unpleasant feelings, but that it usually helps. He says when it doesn’t, “work”, it’s often because people haven’t done the things long enough (bit of, “blame the patient” here, but I understand what he means as my last assessment person gave me a workbook I barely glanced at). I’m pretty frightened of what this is going to entail, and how hard it’s going to be. I’m aware it might mean it gets worse before it gets better, and I’m feeling pretty apprehensive about that. Shit scared, to be honest.

But I’m doing it. So let’s see where this goes. I’ll keep you updated!

Labour are miserable, spineless, traitorous cowards.

And they are rapidly becoming indefensible. For anyone who looks to them for hope or humanity, we are further abandoned. People are suffering and the suffering is going to become even worse and Labour stand by to watch it happen.

Shame on Labour. I am disgusted I ever voted for or believed in you. I give up.

Well done to the 48 who voted with a conscience (including David Lammy, oddly) but you still belong to a party of bastards.

I know this post is insight free, just wanted to register my anger somewhere.

Ruby Wax Is Right- You Don’t Have To Tell Your Employers You’re Mental

Ruby Wax has caused a minor kerfuffle by suggesting that those us whom struggle with our mental health should keep it quiet from employers, and in fact, lie to them in order to protect ourselves.

How many of us have had, “a cold” when general misery has flattened us to our beds? Had dodgy trains when it’s really been a panic attack?

In a perfect world, we’d be able to tell the truth. And our employers would be able to respond compassionately and sensibly. But it’s not a perfect world. Nor is it some post-stigma world as Eleanor Morgan suggests in her response to Ruby Wax:

For Wax, a prominent advocate of mental health awareness and visibility, to tell those of us who experience a mental health problem – one in four in the UK each year – that we’re still stigmatised seems a significant regression. Because as a nation we’ve got much better at not looking on those with mental health problems as weird.

If this has been your experience, then frankly, you are privileged. You are lucky. Mental health problems and the people who experience them are still stigmatised. Just because we’re a bit better now doesn’t mean there aren’t people collapsing under the weight of the word, “psycho”, thinking of which imaginary family member they went to care for in that gap in their CV, having obvious self harm scars people frown at and comment on, being laughed at in the street by your neighbours, having friends and strangers speculate on their mental health when they leave the house or spend their benefits money on something other than bread and water as meaning that they, “can’t be that depressed”, writing their DLA form knowing they’re fucked anyway because in this shiny, happy, post stigma world, mental health problems are being written out of the script altogether and it’s just mind over matter, just Not Trying Hard Enough. It’s hard to know which is worse- being written off as a psycho forever, or your experiences being flatly denied in crazy-making gymnastics which make you wonder if you imagined them all, too.

I’m privileged. I’m sure most of you know this, but I work for Mind, the mental health charity (and it goes without saying that this blog is my opinion, not theirs). My manager is, as you’d expect, very good about mental health and they know all about mine, and what to look out for if I’m getting unwell (thanks to a WRAP). I have reasonable adjustments and understanding for my issues (I’m not too sharp early in the morning due to medication, for example).  In my case, I feel valued partly due to my experiences, and not in spite of them. And that makes me very lucky.  Although we want to work towards a world where this is the rule, not the exception, there’s no way of knowing what your workplace is until you get there.

And it’s fine not to want to tell.  There’s so much talk of, “fighting stigma”, as if that makes us all these foot soldiers. You don’t have to be. You don’t have a responsibility to disclose to, “fight stigma”. You don’t have a responsibility to anybody else but yourself and you should never feel bad that you want to protect yourself. You aren’t failing anybody, letting any side down, by not wanting to be open about your experiences or diagnosis. The reason celebrities can come out and speak is often because they have a lot less to lose (but even then, look at the reception different celebrities get, how struggling with addiction and depression is treated differently from just depression, how Paul Gascoigne is an object of ridicule whereas Stephen Fry isn’t, and in particular, look at the attitudes towards women who speak out as being trivial, hysterical or overemotional).

And things may be evolving, as Eleanor Morgan says. The discourse may be changing around depression and anxiety- but it’s not so much around personality disorders and psychotic illnesses like schizophrenia. Could we change it by opening up? Maybe- but often the shittiest response is in the mental health system itself both to its patients and its employees, and if it’s been demonstrated to you time and time again that yes, you actually do have something to fear, and you will be treated badly, how is someone going to get the confidence to open up generally?

Of course, if you need support and understanding, it is better to tell. If it becomes unavoidably obvious, it’s better to be honest. But although Eleanor says,

Here are the facts: it’s illegal to be dismissed from your job because of a mental health problem. The Equality Act, bringing together the laws that were found in the Disability Discrimination Act, Race Relations Act and Sex Discrimination Act, protects people from discrimination on the grounds of disability. If you have a mental health problem you may not think of yourself as disabled, but if it has a significant impact on your day-to-day life for a period of time, it will probably be considered a disability under this law. It’s a very detailed law, but Mind provides a legal briefing about how it works.

Most important, an employer should not treat you unfavourably because of a disability, and must make “reasonable adjustments to work practices, and provide other aids and adaptations” – for example, being flexible about hours, and temporarily allowing you to work part-time, or have a period of sick leave with the clear reassurance that you are still valued as an employee. If you feel as if you’ve been fired under the cloak of “something else”, chances are you will be protected.

It is extremely hard to prove you’ve been sacked for mental illness, as well as extremely time consuming and legalese. If you’re a temp, you might feel like you have little recourse, likewise if you’re on a zero hour contract and they stop giving you hours. I’m neither wealthy nor successful but i have been fired for my mental health. I was a temp, and there was an extremely specific search to this blog that only my employer could have made, and the next day, I was fired. They just “didn’t need me” anymore. I knew they’d found my blog and read it and that was that, but I couldn’t prove it. And many people with mental health issues will be in unstable employment where it’s tougher to know your rights, or harder to fight for them. And as for, “getting back on your feet”, as Eleanor puts it, no matter how much we want to say mental health and physical health are the same, they aren’t. They should have parity of esteem, but mental illness affects people differently than physical health. You may get, “back on your feet” but have lost your family and friends in the process, and you might have to be on medication for the rest of your life that will affect you physically and cognitively. In a lot of cases, you can be well, “recovered” but need adjustments for the treatment.

Those adjustments may not be made for you, either, due to the nature of your job. I left my nursing degree due to being told to suck it up- I had to work nights and late earlies which meant I wasn’t able to take my medication and invariably I became ill. There was little practical support and no adjustments (and that isn’t even accounting for the shit attitudes I encountered as a mental health nursing student with mental health issues, including a staff member grabbing my scarred arms in front of a patient and shouting at me). My experiences might not be reflective as a whole, but it also shows that there isn’t a cohesive approach to helping employees (or students) with a mental health issue.

The onus on fighting stigma shouldn’t just be on us, but on the people who treat us, the people whom we work for, the people who love us. Whereas Ruby Wax compares mental health to gay rights, and it was gay people who fought for those rights often to a huge personal cost (and their lives), we should be able to count on the backup of those institutions for whom our diagnosis, in one way or another, matters. If you want to tell, if you want to be the one to challenge it, if your workplace is trying, then tell. It can definitely be a powerful thing to take that control instead of worrying about being, “found out”. But please, don’t feel bad if you don’t. Don’t feel like you’re buying into a, “regressive” idea, because you aren’t. It’s okay not to tell.

And employers who are crap with this stuff- you’re missing out on some amazing people. It’s your loss.

I wrote a bit for Dear Stranger- letters on the subject of happiness

A gigantic THANK YOU! for all your comments and reblogs on my last post.  What a lovely response.  I feel like I should follow it up but I’m still one lap short so consigned to my phone. I’ll update proper soon.

Instead of an epic post, I thought I’d give you a quick heads up about:

Dear Stranger is a compilation of specially written letters on the subject of happiness. Such excellent people as Marian Keyes and Caitlin Moran have contributed, and all profits go to Mind.

I’ve also contributed with something I think is a bit odd (and written in the hormonal, angsting fugue of the overdue pregnancy) but which other people assure me isn’t too weird and is actually quite good. Hooray!

It’s about something I wrote about here, too. My fear that my mentalism would blot out my wedding day and that I’d have to be pushed up the aisle like a chess piece (because mental illness isn’t picky). And how that jellyfishing, stretchy depression gradually shrank over the next few months.

It’s out on July 2nd- you can get your copy here.

*shimmy*

Musings on Mumhood- Feminism, Love and Grief

Edit: for some reason this post is showing as May 18th. I wrote it on June 11, so go figure!

I’m currently writing this at 11.30pm, in the garden, where a fairly stiff breeze is blowing. This is the only place I know I won’t run to the baby if he cries (Robert is in the house with him, in case you think I’ve just left him). I’ve wanted to get some thoughts down about motherhood for months, but it’s been rather hard to write. Not just due to the new occupant of my lap. But because my feelings are hurricaning through me and evolving every day.

When I was pregnant, I finally kicked a nasty, expensive habit that garnered me more than my fair share of tuts and frowns.

Bad for your health. And your vocabulary.

Part of the reason I read these exploitative trashmags is that I love peoples’ stories. I don’t think anything is banal. When I was pregnant, I would walk down the street with a person in my body (!!!), thinking, “And this will be you”. The fact that he would be walking down a street lost in his own thought was absolutely mindboggling to me. I find it endlessly fascinating that there’s a story behind every face, that every person dwells within their own private universe.  In a way, there’s nothing more ordinary, and nothing more amazing.

In January, Eva Wiseman wrote an article in the Guardian- “The seismic changes of having a baby”. I read it when it was linked by various Facebook friends. The consensus being, “Big deal. Woman has baby shocker”. Commentary on how self obsessed her article was. Big deal indeed.

Something isn’t less special, less beautiful, because it’s commonplace. Every day is filled with unfathomable, unpredictable ordinariness. Dreams, seasons, love. And grief isn’t less black and deep and consuming because it’s something that happens to everyone, every day, everywhere. Nobody (well, I hope not) tuts and rolls their eyes and says, “Big deal. People die everyday”. So why do we do it when people are born? Why, outside the climatic yet somehow bland scenes of a romcom, is it less amazing?

It’s a peculiarly misogynistic view to hold, this woman’s world of babies and childbirth. How dull, how droll. How very trivial. From woman to mummy, from one judgement to another. (I saw a tweet from a supposed feminist about another feminist, scorning an article they’d written sarcastically saying, “Did she mention she’s a mother?” I blocked her). Women across the world are judged on their status as a mother, or potential mother. Being a, “real” woman is partly judged by your attitude towards or your ability to reproduce.  Our reproductive capacity is perhaps the most dangerous aspect of being female.  It’s when domestic violence often starts or intensifies. It’s a visible, very visceral sign of your sexual activity. You can die because of it- through pregnancy, through childbirth, or through not being able to have a baby. Women are murdered because of it, women kill themselves over it. And the first year postpartum is one of the riskiest periods in a woman’s life- where suicide is the biggest killer. Yeah, this shit matters. This is not trivial.   The people I’ve spoken to most about parenthood have been men. It’s applauded for the dads to say how amazing it is to have a child, but for mothers, there’s ridicule. So what.

I can understand a distaste of the oddly consumerist and competitive side of parenthood. Who’s having the “easiest” pregnancy, to the easy baby, to the best pram, the milestones. That’s trivial. But sharing these things is part of the culture of parenthood. Part of life itself.  Sharing the darker aspects- feeding problems, illness, relationship problems, postnatal mental health, postnatal physical health, sexuality, the huge shake up of your identity, your body, your mind (hormones are real fuckers), wifework and the distribution of labour and for some, regret- is only just beginning to find the light. And so it should. As I said, this shit matters. Motherhood is a feminist issue.

The whole experience has stripped me down and shaken up my values. I love my job, I care about my job, and I never thought for a second I’d not want to go back to work. I used to joke that I’d leave the maternity ward and go to the pub.  But I would happily stay off to look after the baby.  And the Daily Mail would write that shit as, “How Women Are Turning On their Careers for Babies”. Which is bullshit. I’m going back to work, and I’m not a different person. This is a new part of me, a new spoke on the wheel.  It’s frustrating sometimes, exhausting often, but I never knew how easily it would come to love someone, to do those frustrating, exhausting things. How fulfulling it would feel to change a pooey nappy because it means I could kiss his toes and make him laugh, and how much joy I’d get in those tired hours. I had prepared myself for “not feeling it”. People warned me about it. After all, it makes sense. Here’s a person you’ve never met, you don’t really know, who, for a while, can’t give much back. It might take time to love them. And it did- about 10 hours. And since then my love has grown and grown to strain my heart against my chest, to spill into the world, to everyone in it.

And it frightens me. It terrifies me. Throughout pregnancy, I consciously tried not to connect. I felt at every stage I could lose it, and he could die. I tried to protect myself by keeping myself at a distance. Which is very hard when the distance goes as far as inside yourself.  In the quieter moments with Robert on his nightshift I’d play him songs (him! It was him all along in there) and talk to him and feel his kicks in response. And it got harder and harder not to connect when I’d have my panicked morning frappucino (cold and caffeine, the perfect way to get your baby to move) and he’d give me a few pissed off kicks. But it was terror, almost constant terror.

I feel the same terror, mingled with bliss, never a hope of separating one from the other. I’ve sat, so many nights, with his downy head under my chin and cried over it. My fear of death has come back tenfold, because the absolute best case scenario is that I won’t see how my son’s life pans out. (Did my dad feel this way about us before he died anyway?) From both me and Robert, and through both me and Robert, there will come that inevitable terminal separation. Forever and forever from the one who I grew with my body. And that we will break his heart one day, and mine breaks over and over again.

Now my life seems to be measured in his days and weeks and months and years, and not my own. And it feels so very small. The grief is raw, and I try to centre myself. I grieve each clothes size, each little thing that was there that’s already gone- gone! forever! The way he’d sigh after finishing a bottle. Moro! Squealing with delight at Saturday in the Very Hungry Caterpillar. Not being able to reach Monkeys in his bouncy chair. Being so tiny, and now not so tiny.  I used to think babies were hams. That’s the word I used- they’re angry and pink and wibbling. But every day! he does something new. He’s babbling now, giving us long lectures in his language we’re only beginning to understand. He rolled over this week and was so shocked he burst into tears. First, a second of silence, then he caught my eye and his lip began to wobble. I picked him up and called to Robert upstairs. This week, he also stroked a cat. He’s just noticing them, particularly fascinated by their hovering question mark tails. I held his hand- his tiny hand- and pressed it onto her fur. He unfurled his fist and began to laugh- a belly laugh (I understand that phrase now, as I held him he bellowed, and I understand that one, too). And it was utterly beautiful. This little moment of discovery in the world, and as near to death I feel I am sometimes, I am born, again.

That probably sounds evangelical, and I am, in a way. I can see why people worship their children.It’s okay to, as people. The problem is when we see them as extensions of ourselves, which they aren’t. From the second they’re born, they’re their own person. Which is frightening in itself, with all that being a person entails. I don’t know how I’m going to cope the first time someone’s horrible to him. When he’s hurt or disappointed. For the first few weeks I was afraid to take him to places I wasn’t sure were child friendly as I knew I’d disintegrate if I saw a tut, or someone mumbling about bloody kids. They’re part of our lives, part of our society. There are some places they don’t belong (we tried to take him to someone’s birthday dinner, thinking it’d be sedate, but I was on the train home 30 minutes later) but that’s okay.

Another reason why I cry is his childness makes me ache for mine. In as much as he makes me wonder and look at the world anew, my small self is huddled inside, nerves as exposed as my heart feels. When he cries- from hunger, or fear, or loneliness- I feel the fear and loneliness of my own childhood. I rush to make it right, to put arms around the lonely one, to wipe away the tears and soothe the fear. And now I feel every child’s fear and it means I can’t watch or read as much as I used to. It causes me physical pain. I find myself crying at the big things- news reports- and the small, FUCKING ADVERTS. (Fucking meerkat bastards). I feel like a layer of my skin has been sloughed off, and sometimes, I want the hardness back. Give me back my cynicism (it’s still there, somewhere). It’s agonising sometimes. Sometimes too much.

I’m not always walking around in a blissful daze. He can do my head in, too. The sheer relentlessness of it is a shock. This person (person!) is utterly dependent on you and it’s so daunting. And grinding. I miss the days of not worrying whether cot death has taken him (my head plays these awful scenarios, screaming), or worrying that something else will (please don’t take him, take me instead). Today, he was driving me up the wall. He’s going through a Baby Phase, you know, baby stuff. More of the mindblasting world to make sense of. I set my alarm so I could be there when he woke up (as Robert sleeps with him, not me, due to medication). He gave me this gorgeous smile and started kicking his legs excitedly and laughing. Which was a good start. And proceeded to go through the day refusing to nap, going on baby lectures, hating to be held, wanting to be held then hating it, lots of bottles, and a three hour battle to get him to sleep. Then he does that thing- that melty heart thing which is why you eventually don’t care, have a second wind and want the whiny exhaustion to last forever. A three hour bedtime and finally get him to lie down, pick up a book and he coos in anticipation, holds his hand out for me to hold, giggles and makes cute noises with rapt attention the whole way through. Then a few songs which he smiles at so much I gave up with his dummy. Lie next to him and he sleepily gazes into my eyes and rests his little hand on my cheek. What a babe.  This was the book.

It’s given me more love for everyone, and unlikely allies have emerged. People I didn’t know really cared have been on the end of Twitter, Facebook, a phone, with blankets, toys, little hats, clothes. He’s bedecked in the love and the kindnesses of others, and it’s beautiful. He’s an adored and doted on nephew and grandchild. It’s given me a new love for my husband, too. He was amazing throughout my pregnancy, throughout the labour, and he’s a wonderful father. Utter, utter gentleness and love, and pride. Watching them together is a delight. Just him talking- about any old thing- makes Oisín giggle and whoop with delight. He smiles so broadly when he sees him, they adore each other. Robert’s better than me at taking him out, he shows him the world, shares with him so many things. He’s going to be the stay at home dad, and it’ll be hard. The whole stay at home thing isn’t set up for fathers. But what a role model he will be. He’s just a baby, just a child, but the world will try to teach him he’s a boy, and what a boy is supposed to be. And Robert will be there to teach him that a boy can be gentle, and kind, and loving, silly and emotional, as so many boys are, but told they shouldn’t be. He will grow up with the very best boy to teach him. And I hope I can do teach him well, too.

So, my little baby, when you can read, and if you ever read this, I love the hell out of you. Sorry for the sort of swear word but I’m sure you’ll have heard a lot of those by now. It’s because you’re half Irish, and this is our punctuation. And I’ll love you, whoever you are (and I’m getting an idea, my curious, giggly, reachy little Bean) and whatever you do. Nothing you do will ever make me not love you. You’re pretty ace. Now go back to sleep. xxx

PS: I don’t read trashmags anymore. They make me cry.

My Birth Story, The Bipolar Birth Plan Was Bullshit and The Stigma Of Mentalist Mums

So, this is a two part blog, covering two different topics. For they are different! This blog will be about how that whole well thought out, “bipolar birth plan” worked out. And the second will be about new parenthood in general and the feeling of your skin being stripped off your body. It’s too much to cover in one blog.

First, thank you again! Always thanking you, you considerate bastards. Thank you for your emails, comments and congratulations. I haven’t responded because I only have one hand these days. My lap is marked Occupied, which makes it very difficult to blog. I do tweet a lot- you can find me over at ms_molly_vog. Twitter, like food, is a one handed affair. Add me!

How did that, “bipolar birth plan” work out? In short, it didn’t.  Absolutely nothing went to plan, including the thing I took utterly for granted- my son exited via the sunroof and not my vagina. Lesson 1: Don’t have a plan!

The, “birth story” bit is largely for my benefit and it’s quite long! You can navigate thusly…

Part 2: Why bipolar birth plans are bullshit, breastfeeding woes, and encountering prejudice and stigma from a midwife on the postnatal ward

Part 3: How things are now, 11 weeks on.

Exit via the sunroof

I’d been booked for an induction on Thursday, but was so very unwilling. By that point, I was feeling unexpectedly traumatised from two sweeps. A sweep is when a midwife sticks her hand inside you and sweeps membranes away from your cervix to initiate, or speed up, labour. I had been pretty nervous about giving birth but was so fed up of being pregnant (I went to 41+6 in the end!) that I was sanguine about it. From the first sweep onwards, I found myself sobbing every day. I was so very desperate to go into labour naturally, with a longing that shocked me. I pushed the induction back to the Saturday.

On Thursday I started getting strong braxton hicks, though I didn’t know it then. I thought it was the real deal, and scoffed at the whole, “contractions are like your body being wrenched in half”. This was a piece of piss, but not piss-enough for me to sleep. I didn’t take my medication as I had images of me falling down the stairs in the dead of night and slurring in the back of a taxi, unable to properly understand what was happening.  I wanted to be completely present.

On Friday, the real deal happened. Contractions, which, it turns out, are indeed pretty fucking painful. All day, on and off, then suddenly they ramped up in the night (I like to say triggered by my friend’s funny tweet. I told him it had made me go into labour and he didn’t believe me). Excitement, and relief! It was happening naturally! Soon I’d be in the labour ward huffing and puffing and purple and beautific and then waaah a scream and there we go, job’s a good ‘un. Of course it didn’t happen like that.

Last bump picture. Bye bump!

As I mentioned before, I was with a team who care for women who are having home births, and also women with mental health conditions. Gold star service, and I can’t thank them enough. You get a pager number to call when you’re in labour. All I was having at the time were contractions- no dramatic, The Shining-esque gush, a pitiful bloody show (more a fecking matinee). But they were pretty bad, and we were timing them. Lots of dashing around, packing, tea-making, laughing (me), swearing (both). When they were 2 minutes apart, we tried the pager number. And tried. And tried. And it wouldn’t connect. (This is thanks to giffgaff, not hospital).  Rang the labour ward and they caught one of the Brierley midwives on shift, and she made her way over, an excruciating hour wait. She arrived, examined me (1 of ELEVEN exams to come)- 1cm dilated! Did some breathing exercises with me, which helped. Lots of arse-in-air, head-on-hands. Had a shower (ace).. I couldn’t go to the labour ward until I was 4cm, so off she went apologetically and I stayed at home. Had a glass of wine, attempted to watch Wayne’s World on Netflix. Had a bath (useless) with Robert rubbing my back, tried (ahaha) to sleep, while Robert slept soundly next to me, my rage at him mounting with the pain. SLEEPING BASTARD.

Day 2 of no sleep.

Saturday morning, the day of my scheduled induction, and I’d been having frequent contractions for about 18 hours. I couldn’t take any more. I rang the labour ward and told them I was coming. I knew I wasn’t dilated enough. I couldn’t phone a taxi, I felt horrifically vulnerable. I was mooing, sweaty, smelly. The thought of trying to hold myself together in the back of a strange man’s car made me weep. In desperation I asked Robert to call my friend Ellie who had a car and to beg her to take me to hospital, Thankfully, she was free, and she did. At 10am, a shock of pain over every bump, staring out the window, past Norwood, Tulse Hill, finally Herne Hill, the crawl towards the hospital. Two hefty suitcases- one for the baby, and one for me, since we were booked in for a long stay. Trying to find somewhere to park, a good luck wave and we were in. Robert in his good luck Word Up t-shirt. (Incidentally, Word Up by Cameo is a song we listened to a lot when Oisín was in the womb. Consequently, it’s one of the only things that is guaranteed to make him stop crying. Proof:

)

Thankfully, Kate was on the morning shift (after being on call the night before and coming out at 2am! Trooper) and congratulated me on holding out for so long and asked if I wanted an epidural. FUCK YES. Always say this to this. I think I would have been more hardy had I not slept for now more than 2 days and she was fully aware of that. I also didn’t take any medication in this time, worrying I’d be out of it for labour (and they said later they don’t think I could have given informed consent to a c-section- something to think about, mental friends). Until then, though, I had gas and air. Gas and air is a beautiful thing. I huffed more than I really needed, giggling my arse off while the room was set up. Music on (we had a birth playlist- that didn’t work out, either), snacks out, and Kate went to change into her scrubs.

Once the epidural was in, I put make up. I seriously thought I’d give birth with this face. Ahaha. No.

The epidural was pretty frightening. I was giggling (part gas and air, part euphoria as I’d waited an hour and half for it). Siting the needle was quite scary. I was too afraid to move but still making quips, until the anaesthesia went in. It’s a feeling I can’t describe, as though half your body is being chalked out of existence.  A wave of panic swept over me, a feeling that I was losing control. I held onto Robert’s arm, pleading eyes and I knew that was pretty difficult for him. Once it was in, though, it was great.

Then became the second of FUCKING ELEVEN vaginal examinations, each more hideous than the last. You can refuse them, by the way, but there was no reason for me to. I sensed I wasn’t really progressing, and my waters hadn’t broken yet. But the baby was fine. I was on continuous monitoring so I could see that.

To speed things up, they decided to break my waters. They use a little hook, and the first attempt didn’t work. The second did, and from there things became simultaneously frightening and really boring.

They broke, not in a gush but a trickle onto the giant maternity pad I was lying on. Clear, so that was good. Things weren’t so good with us, though. The baby’s (baby? There was really a baby in there, all along?!) heart rate became to drop on and off.  My temperature and pulse were soaring- my pulse was so high they were having trouble telling if it was his heartrate or mine. I start to feel pretty unwell and my catheter is tested, there’s protein in my wee. I had various blood tests- my veins are terrible, so this was more painful than the contraction I was no longer feeling. Many, many, each making me more hysterical than the last. I was losing my good humour as they stuck a needle into my thigh in the end. Off the test goes for pre-eclampsia. It was negative- I had an infection and so now did my baby.  It might have sneaked in when my waters were broken. It’s called chorioamnionitis- an infection of the amniotic fluid, but infuriatingly they never told me what it was infected with.

Another IV- this time, antibiotics. They put me on a Picotin drip to speed up the contractions to get the Bean out. Hours and hours pass. More and more examinations. I am progressing though- in the end, I actually made it up to 10cm, but there was a cervical lip in the way, and Oisin was twisting and turning inside, going from his perfect LOA position to who the fuck knows.  But he’s getting distressed. His heart rate plummets and I find myself flat on my back, surrounded by doctors, crash button hit, preparing to be taken for general anaesthetic for a category 1 section. Robert is in scrubs, and I am sobbing. But it recovers. Calm comes back.

C-section chic.

I’m not allowed to eat or drink in case I need an emergency section.  Robert puts a mattress down in the bathroom and goes to sleep. I can’t sleep- my utter, ridiculous dependency on my medication fucks me again- so I try to watch a film on my laptop and chat to the midwife- the second one- Alex. More doctors come and look up my vagina. At this point I’d kick them in the balls if I could just move my deadweight legs. But I’m not in pain, except for the odd breakthrough where I use gas and air (and I was huffing it anyway to amuse myself- Robert took a sneaky few puffs when the midwife left the room).

Good shit.

Midwife number three comes on shift. My exhaustion is beginning to flatten me, on day 3 of no sleep- she prepares cold towels for me and rubs my arm and chats to me in the low light of the labour suite. I switch positions often- my left side being best for labour but worse for me due to the drips and epidural, which I am terrified of coming out. I can feel the tightening of contractions, know there is a black world of pain beyond the epidural. I play with the bed controls to try and sit up and feel pressure down below- hoping, hopes dashed- that I’d need to push soon. I hadn’t eaten or drank in 15 hours and felt shaky from hunger. Fluids were being pumped into me and I could sip water but lack of sugar coupled with intense tiredness was killing me.  I’d started to vomit at about 8cm so that added to the fun.

They got the baby on an ultrasound and he was back to back (was nice to see him one last time on the ultrasound- I can’t believe it was him in there, all along). The last little bit wasn’t going to come away, and his heart rate was dipping, up, and down, from stress and sickness. The consultant came in and told me we had to do an emergency cesarean. I cried, and snapped at him when he started talking about, “normal birth”. One third of women have these, it’s normal. I felt weighed down by failure and utter terror. Robert was petrified too, kissing me, apologising for all the wrong things he’s done, for not being perfect, thinking, and me too, that I’d die, and our baby would die. I signed some paper work outlining all the risks, each one I felt certain would happen to me. And then I was wheeled to theatre.

It was a bit of shock, the white white lights away from the timeless darkness of the labour suite, the busyness of the place compared to the intimacy of before. I saw it all flat on my back. They put my arms in a crucifix position and topped up the epidural. They tested it by seeing if I could feel the coldness on my abdomen. They described what was going to happen, but I was gibbering from terror. I’d had few of the warned side effects from the epidural up until this point- a mild headache, that was it- but the top up made me shiver uncontrollably. I think I was in shock, too, thinking that this can’t be happening. Robert was next to me, holding my hand, telling me he loved me.

They asked me if it was okay to have the radio on- it was, I can’t remember what was playing, something cheerful. The screen was raised so I couldn’t see (I kind of wish I could have! I watched a video of another c-section on Youtube to see what had happened) and away they went.

This was Sunday morning. I tried talking to Robert but, well, it’s hard not to be distracted by someone opening up your insides. Tugging, pressure, but no pain. Then he was out- I didn’t see him, which I regret. No cry, not for a minute or so. He was whisked away and then he cried. Relief! He was born on 1st March at 11.24am, 25 hours after I’d gone into the hospital.  7lbs 12oz of loveliness.

I couldn’t move, obviously, so Robert up to see him. He said he kind of looked at him, like he knew who he was. After a minute or two they bought him over to me. And I wish I remember what I felt the first time I saw him, but I don’t. I don’t remember these photos being taken. I look happy- I’m sure I was. I was just so exhausted by this point.

They stitched me up and then we were taking our separate ways. No immediate skin to skin or breastfeeding, which even now makes me want to cry.  But he had to go to SCBU- we were still suffering from an infection and he needed antiobiotics. Robert went with him, and, so soon, already, we were separated. Off to the recovery ward I went, feeling overwhelmed and a bit confused. I had a baby.

Postnatal- why bipolar birth plans are bullshit, and encountering prejudice on the postnatal ward

So, I’m in the recovery ward feeling like I’ve been hit by a bus. They told me to rest (3 nights, 4 days without sleep now), which I didn’t. After about an hour, they bought Oisín back. With some help from midwife Sue, we breastfeed and had a bit of a cuddle, and it was lovely.

The bipolar birth plan had specified some key things, remember. Thing 1: private room. Thing 2: Robert to stay with me. Thing 3: I get some rest. Thing 4: Minimum 3 day stay.

There’s a fundamental flaw in the whole plan- you’re never alone, and you’re not allowed to either leave the ward nor take the baby off it.

Thing 1 we got. It was a tiny side room at the end of the (huge) postnatal ward. But there was nowhere for Robert to sleep, not even a blanket for him. I don’t expect hospitals to be hotels, but this was in our plan, we were being forced into this. So Robert called his brother for help (and this is why I mention it- what if we’d had no family, no friends to help?), and he came with an inflatable bed and a blanket for him. I sat paralysed, bleeding and cathaterted up, and not in the mood for visitors (who I banned totally from the hospital). Oisín was in a plastic cot in wheels, like a chicken in an incubator. Twice a day, he’d be wheeled up to SCBU for his IV dose of antibiotics. We’d be staying until he was clear of infection, which could be up to 10 days.

The first night as parents was hell. People kept commenting on Facebook how amazing the first night must be, when we were both in tears and feeling as though we were going mad. We were interrupted CONSTANTLY by staff, for various reasons. Checks, OBs, intrusions. The whole, “stay here to get rest” part of the plan was dreadfully ill thought out. Because a) we were always having someone knock at the door and I was woken up often and b) two people in the room are still in a room with a crying baby, and it’ll wake both of us up.  None of us got any rest. I ended up, even with my medication, getting only four hours of sleep after now 5 days without any. Robert was exhausted, too.  Nobody ever knocked, including the cleaning staff and food people, while I lay on bed, tearful, with my breasts hanging out struggling to breastfeed. I was confused every time the baby cried, a totally alien sound to me. I kept forgetting I had a baby, and I was paralysed from the epidural and couldn’t get up to help him. It took me a few days to comfortably lift him from the cot.

Perinatal psychiatry discharged me after the second night on the ward, with no concerns. They were bollocked by me and Robert, who told them we couldn’t understand how they thought that trapping someone on a ward, in a room, with constant intrusions, was in any way going to let them rest. There was a bit of back and forth, but basically, the psychiatrist admitted it wasn’t the best plan. Once I left, my nurse would come to see me weekly (now fortnightly).

I couldn’t leave anyway- we had to stay until Oisin was free of infection. I was on fairly heavy duty myself- a regime of antibiotics, nightly clexane injections and diamorphine for the pain.  The pain was fine, as long as I kept on top of it. On the second day, I bounced around like Willy Wonka and sorely (so very sorely) paid for it by being immobilised the next day.

I had reasoned with myself that the plus side of being on the postnatal ward so long was that I could get lots of breastfeeding support. Hooray! But the support was crap. Hooroo.

The first time we breastfed was, as I mentioned, in the recovery ward, after being separated for more than an hour. A midwife in the breastfeeding cafe later said this might be a reason we had problems, which made me cry. But that time wasn’t too difficult, and it felt lovely. It made me feel spacey and relaxed. I chased that ease and feeling for the next three weeks, before giving up.

My supply was fine, great, in fact. The problems we were having were that it was hard to get him to latch, and I was in a lot of pain from the surgery and struggled to find a comfortable position. What I should have done, and what nobody ever told me I could do or helped me to do, was to basically stay in bed naked and do skin and skin a lot, to let him find his way, and to express and feed him that. Instead it was a few hellish, uncomfortable days of increasingly feeling like a complete failure and giving him formula in begged bottles.

I asked for a lot of help on the postnatal ward, which mostly consisted of people shoving my breasts into his screaming mouth.  The last time I asked for help was on our last night there. I’ve found out in my notes (which I got in my “traumatic birth” debrief) what happened behind the scenes.

The night shift midwife came on and I asked if we could have a bit of support breastfeeding. I wanted one last good go at it before we were leaving. She said to set an alarm for the baby’s next feed, which was in 45 minutes,  so I did. 45 minutes passed, the alarm went off and I wandered out to let them know. Over the next hour or so I tried again and again, while the baby got increasingly hysterical from hunger. They kept telling me someone would be with me, and an hour later, they came in.  They told me they’d been on holiday so didn’t know these “new” positions (I’d asked about rugby hold, which was the comfiest position we’d tried) and only knew “cradle hold”. Which we tried, but it was futile because he was screaming his head off, and then started kicking me in the scar. I was fairly pissed off and exhausted and said to leave us alone.  One of the worst feelings in the world is trying to feed your baby, and not being able to.  I was a bit rude, but no more than any new, exhausted mum.

The next day, without warning, while I was quietly sitting on the bed with the baby, reading magazines, my perinatal nurse walked in.  She said the midwife (who hadn’t once approached me herself) had rang them to tell her to come straight away because I was, “hyperactive, chaotic and abrupt”. It should be said that previous night I’d slept better than any other- I was asleep by 1am, after I’d made a cup of tea. I guess, though, because I have bipolar disorder, that was, “hyperactive and chaotic”. As for abrupt- I’d barely slept for 10 days. Robert was pretty abrupt, too, but because he’s a man without a diagnosis, I guess he was just “forthright” instead.

I have my maternity notes, as I’d had a traumatic birth debrief. I’d thought the reason the midwife had called the perinatal team was because of my “abrupt” manner towards the (useless, rude) maternity assistant. Possibly, as they’d written down that I was very angry and “not being patient” (waiting for an hour more than your baby needs while he screams will make one impatient)- but what was more significant is that she’d noted- twice- that I had self harm scars. SIX YEAR OLD self harm scars- CLEARLY not new, and most clearly not new since the last fecking time she’d noted them. One of her notes was that I wasg with the baby with self harm scars. A new mother, holding her baby! I wore a cardigan anytime I left my room, but was wearing a vest top in my room, as it was roasting.

It’s clear what’s inferred, and it’s clear why she called my perinatal nurse. It’s that she didn’t trust me with my baby, because I had a diagnosis and scars, and because if you have those things, no matter what you do, your behaviour will be pathologised.

The perinatal nurse was, thankfully, bemused. I was so clearly fine- tired, grumpy and desperate to go home- but fine. She asked Robert if he was worried and if I’d been okay. Because you can’t trust mental people to tell the truth. Nor women. Robert said I was fine but that he was angry about the constant interruptions and had been going mad himself, and that we just wanted to go home now. But what if he hadn’t been there? Would I be on my way to the Mother and Baby Unit? (One of my midwife team agreed with my perspective on this, and said sadly, I was always going to face these issues from ignorant people).

The nurse had no concerns. And I have to emphasise here for anyone going, “but, but, but” that I was geniunely not acting in unusual way at all- I was tired, but, apart from to the maternity assistant- in good humour and polite. There was no reason for them to call. The experience shook me and I felt very upset. I felt like I’d been doing really well and realised that, forever, I was going to be judged upon having scars and diagnosis and that this midwife won’t be the last person to think I was a danger to my child. I place part of the blame for why I failed with breastfeeding at that midwife’s feet. After that, I was worried about showing any sort of annoyance or impatience in case they thought I was mad and called the perinatal team on me again. And ultimately, I did fail. I was with the midwives postnatally for 4 weeks and on the third, getting help every time but not cracking it, the baby hungry and me exhausted, and sick, sick, sick of being touched, I said, enough. Stop. I had only intermittently managed it with him and was expressing every hour. I’d had it.  I still feel like an utter failure for it, I still grieve for not breastfeeding, but I was beginning to dread every time he woke up. It hasn’t affected my bond with at all- I don’t think I could be more bonded with him if I put him back in my uterus. I adore him.

But me and baby both infection free meant we were discharged later that day, hooray! We played him this and both cried:

Now

Robert’s brother drove us home- it was a full moon that night.

So, eleven weeks in and I’m good. I’m still trying to make my peace with failing to breastfeed, but he’s thriving, which helps. He’s amazing- I’ve become one of those boring bastards who Facebooks their child’s every fart, but they are such lovely farts. He’s a smiley, happy, beautiful little thing.

(Despite having to attend 2 funerals before he’s even 2 months old- the first of my granny, the second of Robert’s. From 3 great-grannies to 1, within 2 weeks).

Mentally, I’m okay. I’ve been having a bit of resurgence of my anxiety.  I worry about things happening to him and get some frightening intrusive thoughts. My death anxiety has come back, because a baby makes you even more acutely aware of your own mortality than before. I’m coping with it, though. I’m struggling a lot with my medication and wish I was off it but my team don’t support that in the slightest right now, and I’m worried about doing anything, “wrong”. Robert does all the night feeds, as I’m too drowsy. I did try, and dropped the bottle, and him. I feel quite useless sometimes, but coming off it will entail brutal insomnia so I guess now isn’t the right time. I see my perinatal nurse every fortnight and she’s been hugely encouraging and supportive. I’m glad she’s been there. The midwives who were with me pre, during and postnatally were also amazing, and I’m making them a nice card (because I’m 5).

And c section recovery wasn’t too bad. Pain and stiffness and weird bladder numbness but mostly fine now.

I have a whole ‘nother blog about parenthood, so I’ll end this one now at- fuck me, 4500 words! I bet your screenreader is steaming. Here’s some cute baby pics as a reward for sticking with it!

Today!

Today!

So, I have a son now.

Here he is. This is Oisín, who was born on the 1st March!

Proper blog in progress…

Gonna be a long one…

My Big Fat Bipolar Pregnancy 2: A Video Blog on “The Birth Plan”

…or perinatal care plan.

Whoops, this is 2 months late, I’m sorry! I didn’t want to just leave the last entry hanging, but I’ve had horrendous writers’ block on this subject for reasons I explain in my very first video blog!

I am as shattered as I look. My first go was much better but Robert walked in in his pants. This video talks through, “The birth plan” that was coming up in my last entry. So, I explain what perinatal psychiatry would like to do when the baby comes, and my feelings on that. And if the baby ever comes- I’m 40 weeks and three days now!

I hope you find it helpful, please do share if you do, there’s not a lot of talk on this about.

Have a disability and/or MH condition and want a career in hospitality? Channel 4 want you!

Posting this for my friend, who’s making this programme. She is fantastic, sensitive and clever and can vouch for her being good people. See below and please direct all questions yonder…

Are you struggling to find a job? Would you love a career in the hospitality industry? Do you have a physical, sensory or other impairment or a long term condition?

Twofour, one of the UK’s most respected TV Companies, is producing a ground-breaking series for Channel 4 Television Corporation.

We are looking for disabled people or those with a variety of conditions, who want to seize the opportunity to be trained and gain work experience under the watchful eye of one of Britain’s most renowned chefs, which will hopefully lead to being offered jobs in a restaurant, café or a hotel
If you are interested in hearing more please contact 02922 450054 or email dinercasting@twofour.co.uk

My Big Fat Bipolar Pregnancy- feat. the perinatal psychiatry team and The Fear

Mental illness isn’t the bogeyman.

I’ve been quite quiet here. It’s not as though I haven’t been trying.

See?

Those drafts were mostly interrupted by bouts of exhaustion and blankness. I’d tried to write something funny and light, but it felt quite forced.

What’s prompting me to write today is the heartbreaking death of Charlotte Bevan and her four day old daughter, Zaani.  What’s known is that Charlotte had a history of mental health issues- namely schizophrenia and depression, according to her family- was severely sleep deprived and had stopped taking her medication as she wanted to breastfeed. She left the hospital in clinical slippers without a coat, her baby wrapped in a blanket.  They both died, in this freezing December, near the Clifton Suspension Bridge, a common suicide spot.

I’m not going to speculate. I’m not going to say that I recognised- viscerally- the hollowness in her eyes as she walked past a series of CCTV cameras. Nor wax, too much, about my own terror of visiting that lonely place.  I’m not going to pontificate on mental illness or womens’ agency, paternalistic attitudes or breastfeeding.  I’m not even going to post a screed on the woeful provision of perinatal mental health services in this country.

Hint: areas in the red have no perinatal mental health provision. I live in an orange bit.

Services and support which should be available everywhere- to every woman- who is pregnant or has given birth. I’m not going to talk about the senselessness of this when a woman’s risk of suicide is highest in the year postpartum. Nor that it’s any woman- not just a woman with a known history of mental illness.

So what I’m going to do instead is tell you- maybe selfishly- about my own experiences of being a pregnant woman with bipolar disorder, whose mother had postpartum psychosis, who is therefore under the perinatal mental health and considered a high risk pregnancy.  I’m going to explain how that feels for me, and about the kind of choices I’ve had to make.  I’m going to talk to you about what’s happened to me since I peed on the stick and found out I am expecting a son (not a daughter- that was a bit of surprise at the anomaly scan. I have grown a penis. Whole other blog in that and how I shamefully have far more gendered ideas than I thought I had).

One of the reasons I’ve kept my pregnancy related bibblings confined to my Twitter and Facebook is because this blog is, and always has been, a mental health blog.  And my mental health has governed my life for the past decade. Every major life event has been impacted in some way. I only got 7 GCSEs because I had a breakdown. I was then kicked out of college because I was a rambling, nonsensical whirl of mania. I moved to London in its midst. My father’s death was followed by my admission to hospital. A series of job losses, four years on benefits. I dropped out of my mental health nursing degree partly because I had become suicidally depressed. The good stuff, too. I won an award for a play based on this blog. Not me, and not my life, but my own fractured narrative of mental illness. I’ve had writing opportunities because I write about mental health in a way that people enjoy and relate to (thank you). But that’s all anyone has ever really been interested in about my writing. Or about me.

Here I am, pregnant. And it’s such an abstract thing, though increasingly less so over the weeks. 29 have passed- from a feeling, a line, a long stretch of sickness (which is also why I have been more comfortable with the microblogging of Twitter- constantly vomiting and general exhaustion doesn’t render you the most capable of stringing together a….se), to now experiencing flutters and rolls and bumps. It’s still so strange to me that this “being pregnant” will become, “giving birth” (argh!), to a newborn, a tiny little stranger, who will become my son, and I will become their mother. And they’ll have words, mannerisms, be a sovereign human being in their own right, have memories of me, and I’ll have memories of them. Hopefully one day we’ll talk about them together. And they’ll have a name.

And this is mine. It’s all mine.

It doesn’t belong to a doctor, it doesn’t belong to a CPN, a diagnosis, a theory, a plan, a pathology, a movement. It belongs to me, and to my husband, and to the people we love who are sharing in this with us.  Of course, it’s pregnancy, a highly medicalised event. It has its own language, it’s own pathology, its own plans. But they have been so reassuringly, wonderfully, vividly familiar to me. Here is a path my mother walked down. And you. And you. As disempowering as the experience can be, as lonely, as radicalising to my feminist ideas of myself as a woman and a female, it is ordinary.  It is so ordinary that when I vomited my breakfast in a yellow arc onto the black and white tiled floor of my local cafe, the women who worked there didn’t flinch. “It’s okay, we’ve been there, we remember what it’s like”. I felt part of some great tradition, and here was the initiation ceremony.

But Charlotte Bevan’s tragedy can’t help but make me think of my fear of the future.  I haven’t been the perfect pregnant woman by a long stretch. She is slim, she eats organic food (except eggs, cheese and raw fish), she doesn’t drink, nor smoke, nor get stressed. She does 30 minutes of gentle exercise a day (maybe yoga or pilates), she doesn’t dye her hair nor pet her cats.  She doesn’t take any medication, not even for one of the numerous headaches she’s likely to have. She does all this not just because she is told to, nor because she is “good”, but because she became a mother at the moment of conception. She’s the selfless mother, the ideal woman. She’s not a person but a habitat from when sperm meets egg.  That’s the perfect pregnant woman, and she’s still not perfect enough.

I am so far from that ideal that it’s hard not to feel like a failure already. I’m obese from years of psychiatric medications. It doesn’t matter that I have no weight related problems (as rigorous testing, hypotension and seemingly endless urine and blood samples will confirm). It was enough for me to be told, almost accusingly, that I WILL get gestational diabetes and pre eclampsia and that they’ll need to keep an eye on what I eat (which was pretty easy- just check the floor of the train at Tulse Hill station).  I smoked and drank, I drink more caffeine than recommended because for half of the day I am in a fugue from the antipsychotic medication I’m still taking. I get stressed and more than that, I have a diagnosis of mental illness, I am struggling to exercise due to exhaustion and I cuddle my two silly, wildly affectionate cats. I don’t feel like a mother yet, and I wonder when I will. I don’t think in terms of, “little angel”.  I didn’t undergo some sort of transformation as soon as I became pregnant. I still haven’t.

I have been reminded so frequently of my own imperfections as a woman that I have felt that my, “maternal habitus” is a cesspit. I have, at every stage, thought, “This is when I lose it”. Blighted ovum, then miscarriage and now I’m petrified of stillbirth, after that, it’ll be SIDS. So I’ve been afraid to bond with the little Bean in there, even though he’s growing wonderfully, booting away and, usual pregnancy niggles aside, I’ve had a pretty easy go of it.  The anxiety has at times been so bad that my psychiatrist has added a brand new diagnosis to my pregnancy notes- generalised anxiety disorder.  The anomaly scan was supposed to be a turning point, and it was.  It looked like they had a rare and serious birth defect called esophagal atresia. We spent the next few days, waiting for a rescan, in a fog of terror. My husband ran ahead from me as we returned from hospital to hide the little leopardprint coat we’d bought them and to put away the box of baby stuff that had been donated to us.  All our images of taking our baby home after the birth, the mundanity of feeding and changes, were replaced with immediate operations, long stays in the NICU and a possibility our baby would have a potentially life-ending chromosomal disorder. (The rescan was clear. Subsequent ones have been, too, but we still can’t relax).

As much as this does not belong to mental illness, mental illness does belong to me. I can’t, as much as I want to, separate that from the seismic physical and emotional changes I’m going through right now.  The problem with being in the mental health system for a long time is you’re told so many different things are wrong that eventually, you believe nothing is. And you can be a bit shocked when others don’t share that belief.  Initially, I resented their intrusion. Imagine what I would be writing if they didn’t exist in my area.

In the beginning

Due to the, “holy fuck, what is this, am I dying” nausea I experienced until 23 weeks, I knew i was pregnant pretty quickly. I got a positive test at 5 weeks. The first thing I was worried about was my medication- I had no idea if it was safe to take, but also no idea how I’d cope without it.  The first few weeks were the hardest emotionally. We’d just been told we were being evicted and had to find somewhere else to live. That stress coupled with the (happy) shock of being pregnant and the hormonal surge meant I spent the first month oscillating wildly. But it wasn’t really anything unusual- it was a reaction to the situation we were in and biological fuckery. (What is unusual for you? Write that shit down now. Give a copy to the people close to you).

I went to see my GP, who congratulated me, said she couldn’t definitely advise me on my medication and referred me to the perinatal psychiatry team.  She told me to continue to keep taking my medication, and so I did (and still do).  At the moment I’m only on Quetiapine, which is an antipsychotic.  She didn’t seem fatalistic or concerned, which cheered me up. I’ve written before about some of the fears I had about pregnancy. Mostly, they’ve been unfounded, but I’m still afraid. 

The perinatal psychiatry team

Midwife number 1

Risk, risk, risk. You have a high risk pregnancy.  No fancy home birth for you (fuck that, I want TEH DRUGS). Your BMI is over 30, you’ve smoked and you’re mental. The midwife took my history as I shrank into my chair. She wrote, “SLASHES ARMS SINCE AGE 14”, something which shocked me so much I asked her to correct it. It’s inaccurate- I haven’t self harmed in 5 years- and the word, “slash” is such an ugly, deforming word that I didn’t want associated with me, or my pregnancy. She apologised and changed it, saying she wanted me to be comfortable.

A few weeks later, wearing my Baby on Board badge with my sleeves rolled up in the sweltering heat on the tube, I saw people clock- with disgust- my scarred arms and the badge. And realised that I now have the rest of my and my child’s life with this. Flashes of bringing them to the swimming pool and being stared at. School gates. Grief.

Fuck ’em.

The perinatal nurse 

I had to give a different history to the perinatal nurse who came to visit me at home. This was the story of my life, told, lightheaded from nausea, in my garden. It was summer then, and we were just getting settled into our new flat. Robert was asleep upstairs after a nightshift.  I offered tea, which she refused.  She has that light, almost incredulous way of speaking that some mental health nurses do. I’m already familiar with them- I did a few days with the perinatal nurses when I was a student, and they seem altogether more gentle than their CMHT counterparts. She said, “Oh, what a lot you’ve been through. It’s no wonder you’re so anxious and worried about getting attached”. At this point, I was correcting people who said, “You’re having a baby!” with, “No, I’m pregnant. It’s different”.  I wasn’t really sure what to say to that. I know people mean well, but my life hasn’t been that bad and I don’t like it when people head-tilt (the IRL version of italics) or feel sorry for me.

She taught me some breathing exercises for panic attacks (my panic attacks abated somewhat for a while. Being so busy does that. They’ve returned a bit lately) which don’t seem to come close to controlling the death terrors I experience at night, and made an appointment with the psychiatrist for me.

Before she left, I felt like I needed to ask.

Will I be referred to social services?

Midwives can sometimes be a little cautious with women who have mental health issues, she admitted. But no, the midwife hadn’t made that call. “Are you planning to?” No, not at the moment. If we’re worried that you might need more help in coping then it’s something we can talk about.

I still haven’t been referred, though my psychiatrist admitted that when I called them (having to reschedule that first appointment as I didn’t receive the letter with the date), they had considered doing so.  But I am coping, and if I continue to, good. “Will they take my baby away if you call them?” No, that’s not what they’re there for. Sometimes, we can need a bit of practical support.  We want to keep you and baby together, not separate you. It’s usually better for both mum and baby to stay together. We’re here to support you in staying well.

While I’m glad I didn’t get an automatic referral, I know this may be partly due to my diagnosis. My perinatal psychiatrist believes that bipolar I disorder is the right diagnosis, and that’s what we’re working with. I tend (these days) to be okay for ages, then get kicked right up the hole with it. That’s where the, “risk” largely is- bipolar disorder has a high relapse rate during pregnancy, tricky management and is more likely than depression to lead to postpartum psychosis. My mum also experienced psychosis after birth, which kicks my risk up past 50%. So, it’s a pretty shit diagnosis to have during pregnancy. It does have an advantage- throwing medication at it can work quite well (as long as you aren’t stupid enough to throw just an antidepressant in there) Everyone’s different, but depression, mania and psychosis generally have quite obvious triggers, and well tested treatments.  It’s not more or less “real” than other mental health issues. There’s no, “real” one, really. We still don’t know what causes any of them, but some are viewed as more biologically based than others, and that makes them, if not easier, then more predictable to doctors..

Some women I know who are as functioning as I am, but who have a diagnosis of personality disorder, have been referred to social services.   This isn’t fair, and I think it’s partly to do with the stigma surrounding it, and partly because it might be viewed as less predictable than bipolar disorder. It could also simply be their trust, doctor and nothing to do with their diagnosis. I did actually have borderline personality disorder as a diagnosis in the past, but it hasn’t been one I’ve ever been treated for. I don’t believe I have it, nor does the perinatal mental health team, who noted it was historical, not a concern and that I seemed stable. I felt like an arse for being glad about this. It’s partly due to the fact that when it’s flashed up on the screen in the past, I’ve had a lot of irrelevant, tedious questioning about self harm (not in years) etc. You may as well be asking me about a decade-old leg break.

But these means that women who have been referred and monitored very closely might have a different story to me. I’ve been largely okay so far, but that’s the shitpantsingly scary thing about mental illness and particularly mental illness in pregnancy- it can descend with terrifying swiftness and brutality.

The mental health midwives

When I was referred to perinatal psychiatry, my care was transferred from the community midwives to a specialist team called the Brierley midwives. They’re 8 community midwives who specialise in two things:

1) Home births

2) Women who have a history of mental health issues

I felt pretty smug as half the yummy mummies in East Dulwich want the Brierley midwives and I got them automatically for being mental! Some perks of the job, eh.

They’re a small team, split in two. So I essentially have 4 midwives. I have my named midwife, my first port of call. Throughout my pregnancy, I’ll meet all the rest in the team of 4, so when I go into labour, the midwife won’t be a stranger to me. That’s pretty good and a relief for someone like me who has been struggling with anxiety and likes to know things in advance.

I have the normal midwife appointments with them, but can also have a few extra if I’m nervous. They’re not trained in the same way mental health nurses are. They’re more holistic in their approach, and take care of your emotional health as well as the health of the pregnancy. They’ve been great, and are always very keen to let me listen to that lovely little horsehoof heartbeat sound. They’re not hugely different from ordinary community midwives.

The perinatal psychiatrist

The perinatal psychiatry team are situated in the same hospital as the maternity unit. It’s a rather unpleasantly long walk down a thousand blindingly shiny corridors that seem to swim and shimmer to the exhausted, teary-from-vomiting eyes. The reception area has always been empty when I’ve arrived. There’s only about six seats and my burgeoning behind means I need two.

I’m instinctively, defensive around psychiatrists. I’ve worked with them professionally so I know they’re human beings. Mostly, they’re also compassionate human beings. As doctors, though, they are drawn to the mechanical and the explainable. It’s sometimes disturbing to feel you’re a puzzle to be solved rather than a human being, too. They have so much power over the lowly mental that it’s extremely hard to let your guard down.  This time was, at least, quite different from when I’ve seen psychiatrists attached to the CMHT. I hadn’t been summoned there like a naughty child to the headmaster’s office. I was well and there to take advantage of their support- conversely, it meant I was also a little resentful of having it forced upon me.

Alongside quite a few leaflets. I keep them in the living room for easy reading for us both. Got a spare minute with a cup of tea and want to terrify yourself?

Ta-da!

Can I take psychiatric medication throughout pregnancy? Can I breastfeed?

When talking about medication, I told her that I’d tried to come off it numerous times but suffered such awful withdrawal (insomnia, itching, eventual quasi psychosis from sleep deprivation) that I’d always returned to it.  She frowned and said Quetiapine didn’t have any withdrawal symptoms. As I tried to elaborate, she picked up a copy of the BNF and began flicking through it to disprove me. That was a strike.

As fat as I am due to it (Quetiapine doesn’t cause weight gain, she said. Strike 2! Tell it to the people suing the company that makes it for their diabetes), it’s the one medication that has helped me stay sane, and largely because it means I can sleep. I am a natural insomniac and very prone to hypomania and hyperactivity because of it. Getting regular sleep has been the lynchpin. Although I went into the appointment to argue my case for coming off it, I was secretly hoping she’d tell me it was okay and I should stay on it, as the thought of going through withdrawal and insomnia was unbearable.

She did.  Quetiapine is a category C medication in pregnancy. It means risk can’t be ruled out, and it can’t be ruled out because it’s unethical to test on pregnant women.  Case studies so far indicate the risks are gestational diabetes and diabetes 2 (I have been tested twice for GD- I don’t have it and won’t be tested again) which can cause a high birthweight.  Confusingly, the consultant obstetrician (I get one of those due to being a high risk pregnancy), says it can cause low birth weight. So go figure.  There’s also evidence that it can cause slight respiratory problems after birth, sedation and babies may be a little behind developmentally for a few months, but catch up. Their APGAR score is generally 9 or 10, which is great.

These are all scary sounding things and I’m still scared of them. I do feel a sense of failure and wish I was, “normal” and didn’t take psychiatric medication. I think about how sedated and dopey I am and feel a huge sense of guilt for what it might be doing to my baby. And because there’s no long term studies, I also have no idea what it’s doing to their developing brain.

But. I have to try and put my faith in…something. Myself to keep well, which cannot be done by willpower alone and especially not now.  In the perinatal team.  As much as she initially rubbed me up the wrong way (I warmed to her a lot in subsequent appointments. It’s never easy to go in and tell your whole life story to a stranger), she is the consultant and I trust her opinion. Most importantly, I’m being closely monitored- and so will Bean when they’re born and afterwards.

So, breastfeeding.

Breastfeeding is great. Boobs make milk! How mad is that? You’ve had them your whole life and then, when you’re pregnant (or taking Risperidone), they inherit this magical superpower. MILK! It’s food! Holy shit!

But some women’s boobs don’t make milk. Some women find it too uncomfortable, painful or downright weird to breastfeed. Some can’t, some don’t want to, and that’s all fine. Because you know what else is great? Making our own choices about our own bodies. Breastfeeding is not the be all, end all, and the medical establishment- and frankly, other women- have a lot to answer for in downright shaming women about breastfeeding.

It’s better than formula in some ways (and not as good in others- formula has added vitamins our bodies don’t make, formula is very convenient too). It does help with things like shrinking your uterus back (ping!) and as for bonding, I don’t know. You can still do skin to skin contact with a bottle and bond that way. Breastfeeding doesn’t give you nor your baby immortality. But I can understand why women- even if you sort-of discount that intense societal and medical pressure- really want to breastfeed. I do. I want to do to it because I haven’t done it before and it’s a new experience. I want to do it for the benefits it does have.  I want to do it because it’s cheap and we’re skint. I want to do it because boobs, milk, weird.

The general blanket advice for women taking medication, particularly psychiatric ones, is don’t breastfeed. Please get a specialist opinion on this if you can. Some resources include Drugs in Breastmilk from the Breastfeeding Network.  If you know someone who is facing this question who isn’t getting good advice, try to help them find it. Because it’s a big one. Women are being encouraged- and deciding themselves out of pressure, desire, guilt, complex, personal reasons I would never want to judge or belittle in any way- to stop taking medications which are potentially keeping them safe and stable so that they can breastfeed. This is wrong. I don’t mean medically, I mean morally. Women should be encouraged to put their health first. Believe me, I understand that, especially when you’ve struggled with your mental health, you so want to do the, “right” thing, the, “natural” thing, the thing to bond and connect. But formula is not going to kill a baby, whereas a relapse could kill the mother. That’s as brutal as it gets, but it’s true.

I got specialist advice from my psychiatrist who says I can breastfeed. A very tiny concentration of the medication will be in the breastmilk. This study reports 0.1% of my dose and no adverse effects. I’m on the lowest dose of quetiapine I can get away with, but it’s likely that’s going to increase as it’s working less effectively as time goes on. So again there is a little risk with breastfeeding. I’ll be monitored (awful word) and if it’s having effects on the babe, then I’ll switch to formula. Will be upset and disappointed? Probably. But what I am repeating to myself, in my rational mind, is my health first.  I can’t look after my baby if I’m unwell.

The Birth Planning Meeting- making a mental health advance directive

I last saw my psychiatrist about 10 days ago.  I’m doing pretty well so we won’t have any more appointments individually, nor will I be seeing my perinatal nurse again unless I ask to. I will be seeing them on the 15th of December to have a birth planning meeting.

This is essentially where your whole “team” (including your future health visitor) gets together to talk about your birth plan and what you want to happen afterwards, especially if you become unwell.  As rationally as I’m writing this, as ticking-along as it’s been, that’s a possibility. What do I want to happen, what do I not want to happen? Would I be okay with an increase in antipsychotics, and if so, are there ones I don’t want to take? (This may largely be out of my hands if I do get sick, but my wishes will be taken into account).  We’ll also discuss treatment options should I get sick, such as the mother and baby unit. There will also be general discussion about labour, like with any woman.

I’ll know more about this when I actually attend it, but I feel quite reassured by it. Robert will be there too, and no doubt find it all quite bizarre.

What will be happening is that I will continue taking medication after the birth. And there is a huge concession here- it means my husband has to give up work when the baby’s born. You can imagine how financially shattering this will be, it’s maternity leave (I can only take 6 months at the very most, and that’s a huge struggle) on one salary. But he works nights exclusively, and hasn’t been able to find a day job. I work full time and want to return to work. The “team” agrees that although I’m likely to have sleep deprivation like any new parent, it is completely essential that I get as much sleep as possible to stay well, and this means Robert will have to stay at home with me and do nights with the baby so I can take my medication and sleep.  My doctor and midwife are pretty worried about me going back to work so soon, but I don’t really have a choice as we can’t afford otherwise. I only get 3 months maternity pay and have been saving up otherwise.

The Fear

When I got home from work tonight, I broke down crying for the first time in months. Despite all this planning and all this support, I am terrified of becoming unwell after the birth, terrified of it happening now, too. It does feel so frighteningly out of control, even after writing 5000 words as to how it isn’t. I feel like I don’t really have control over anything.

I am scared of how quickly women become ill after pregnancy and scared it’ll be me. Scared I won’t be able to ask for help, scared I’ll be beyond even recognising I need it. Scared Robert won’t be able to cope, scared of being alone (it is the loneliest place in the world), scared of not being able to care for my baby. Scared of being a failure. Scared of not being able to bond. Scared of feeling trapped, scared of what I’d do if I did.  Scared of the fact I have made the one irreversible decision of my life.  Scared of a lot of things a lot of women are scared of.  That spiky sea urchin in my brain is a saboteur and a liar and I make a conscious effort not to listen to them.

But having support does help. It does make a difference. I have a partner, which is support a lot of women don’t have. I have an understanding workplace, too. I have the perinatal team. I have these clear things in my head, here, and in my notes. It isn’t the quivering inarticulate terror of when I became pregnant. It isn’t the kind of fear and uncertainty I imagine many women who don’t have support feel. I don’t know what support Charlotte Bevan had. I hope her family have some support right now for what they’re going through.

All women need and deserve support when they’re pregnant and afterwards.  A check up at 6 weeks is not good enough. A questionnaire will not cut it when we are so ashamed of how we’re feeling and so afraid. Feel free to ask me anything here or on Twitter- ms_molly_vog. If you’re pregnant right now, or thinking about it, please reach out if you’re struggling. To someone- your GP, your midwife, a friend, even a forum or Twitter if you need to talk.  I apologise for you in advance if your GP or midwife are shit, if your mental health provision is shit. It’s not right, it’s not fair, and it’s not how it should be.

It’s 1am now. Tears largely dried. Time to sleep, if searing heartburn allows. I am feeding Bean a fine selection of curries when he’s 18. Sweet revenge. Night.

*bump*

Insert blog about bipolar and pregnancy here

It’s in progress. I will post more soon. I am really struggling at the moment.  I’m sorry.

Pregnant, Mental and Fat

Bloody hell. It’s taken me 18 weeks to write this post. I imagined a dam would burst when we told everyone at week 12. And I, who diarises everything and have done since I was a child. Anyway- better late than never. This is my news…

Whomp whomp whomp she says

I found out I was pregnant on the day Rik Mayall died. My already not inconsiderable boobs seemed to have become zeppelins of ache, so I decided to grab a pregnancy test on my way to work to  wee upon in the peaceful surroundings of the disabled toilet. I yawned as I waited for the results, expecting it to be negative like all the others had been. It wasn’t.

The first person to find out wasn’t my husband, but my much beloved friend at work, Ellie. Robert had just gotten off his week of nightshifts and as I’d left for work, had been barbecuing in the garden with his friend Ben.  As I waved goodbye there was the, “hhsssstt” of an opening can and a peal of already-rather-drunk laughter. (In fact, this was him that very morning:

I bumped into her as I was dashing across to the Superdrug to buy another four pregnancy tests. I’m one of those incredibly unlucky (or lucky, depending on how you see it) people to have gotten a false positive pregnancy test (two in fact- fuck you Sainsburys own brand). That positive test was met with jubilation, calls to buy fizzy wine, shock. This time it was rather different. I got home from work, having sent Robert a few subtle, “Hey, you sober now? Wow, about that Rik Mayall eh?” texts throughout the day. When he texted back to tell me that he was turning into an otter, I thought it was best to break the news in person. Which I did by shaking him awake at 7pm and quietly telling him the news. It took him a while to shake off the alcohol haze and for the news to be understood.

We had approximately 19 hours with which to enjoy the news and to imagine a future with a child. The next day, our bastard landlord. the criminal scumbag Gabriel Edun whose negligence could have killed us in the house fire it caused, was heard casually talking over the garden fence with the landlord next door about their offer on the flat. He was selling. We confronted him and he admitted that he would be serving us with a section 22 notice of eviction. We’d only lived there 3 months, and those 3 months we’d lived in a sooty, fire damaged whole, taken days and days off work, not just for hospital treatment after the fire but to sit around waiting for this lazy piece of shit to come and make the flat breathable again. We’d only endured it because the flat was very cheap and he had assured us, repeatedly, that he wouldn’t be selling and we could finally have somewhere to make a home.

Fucker. We left him this as a present.

Sincerely, motherfucker.

(The shitbag scumlord couldn’t had evicted us legally anyway- he didn’t protect our deposit and I got it back when I threatened him with court. I had spent the day cleaning his shithole and as I left, he offered to carry the hastily packed bags of an unwanted house move to the bus stop because of my “condition”. I declined).

We could have waited three months until he served the eviction notice, but in the three months since we’d moved to Lewisham, we’d already been priced out of it. We had to move quickly. The next weeks I could barely sleep, and could barely eat because I was throwing up everything that passed my lips (“morning sickness” my HOLE. All day sickness.  All 15 weeks of endless dizzying sickness). We were both hysterical, me crying often, totally screwed financially having spent everything we had on moving three months previously.  It absolutely ruined the first month as all I could think about was where we were going to live and what we were going to do. We ended up having to borrow money, and kind friends helped, too, and finding a place in Streatham, far, far more than what we were paying but still below market rent. What a fucking joke London is. (Incidentally, we moved to Streatham to be close to Robert’s family, who are now all moving out of fecking London).

Having to move also meant that I had to end therapy. I had *just* started therapy (finally) for panic disorder.  I was struggling to get to appointments on the bus due to sickness, so she said she thought I’d be better referred to Lambeth, which I agreed with. Couldn’t transfer, had to do a new referral. Which I’ve yet to do.  Because…

This got long. In the next entry, I’ll discuss the NEVERENDING APPOINTMENTS you can expect if you’re both pregnant and mental! 

And I’ll also talk about how GREAT it is being FAT and how you’re basically told you’re KILLING YOUR BABY just by EXISTING WHILE FAT! 

MARVEL as you VOMIT for 15 weeks! 

To be continued… 

On being lonely

I’ve written about pissing into bottles when I’ve been depressed, and yet to me, this is a blog  whose responses I fear the most. Because admitting that you’re lonely seems to be the most shaming thing you can do. We’re meant to be glitzy! Instagramming! Vineing our awesome lives! And this will sound like one long self pitying tract, which it is, really. All I want from it is to get some thoughts out of my system. It is not a plea for contact because as I will explain I must do those things on my own terms and not be forced into them or feel obligated because I find that scary and overwhelming. Like someone who hasn’t eaten for a bit- I’ll be sick and not want to eat again if I have a big meal. I need to have little nourishing small things that I am comfortable with.

So.

The consultant psychiatrist phoned. About three minutes I said, “For fuck’s sake”, and thought I could hear the dancing of fingers over the keyboard as my diagnosis magically changed.

“What support have you got around you at the moment?” she asked, after chastising me for swearing (like my very first consultant did, at the age of 15. And it rings in my ears now 13 years later, “You’re an intelligent girl, Seaneen, you don’t need to swear”. And I’ve said “fuck you” since). “Friends?”

“Not really”, I said.

Russling of papers. “How long have you lived in London?”, she asked.

“11 years”, I replied. 11 years and, “not really”. How after 11 years can I, “not really” have any support, no clique, no friendship group, no life? No stories to tell on a Monday (any Monday).

She sounded doubtful. What do I sound like? Bright, probably. Rude and cheeky but definitely not unfriendly. Russle russle. Stable romantic relationships- married 2 years, been with this one 5, the previous one, 3 1/2. Good people, good relationships. Difficult upbringing but made peace with us, adores her family. 680 Facebook friends (A Facebook full of my moaning. No wonder I am alone). 3000 Twitter followers! A faithful readership of a formerly semi-famous blog. Married, for god’s sake. In full time employment. In every way, Normal. “Recovering”. Probably quite well liked, really. Extroverted.

Occasionally it’ll squeak out to my 680 Facebook friends. Another interminable weekend. Long long days. Making things up in work for what I’m doing. So many plans! Facebook. Netflix. Sleeping. Tea. Talking to myself to make up for the silence.

“Oh, that sounds like a great evening. I’m in my pyjamas, it’s been a long week…” … No, you don’t understand. This is every weekend. My husband works nights (7 on, 7 off) and on those 7 off, I am alone, alone, alone, all the time. For three years. Longer even, as I was alienating people well before that. This isn’t a respite from pubs and clubs (when was the last time? I can’t remember the last time), holidays, festivals, people coming round, conversations, laughter. There hasn’t been a new picture of me on Facebook for 2 years (not one that isn’t a self conscious selfie- look, I exist, I swear, I’m here…) THIS IS MY LIFE. Talking here. That’s it. THAT’S ALL. I have no memories to share here.

Someone comments. “I’d come round, just ask :)” Hastily delete the status. You never saw it, it was never there. I’m fine (Like a teenager, I lay on the bed last week and cried from loneliness. Absolute desperation for another human being to be there with me, to talk to, a cup of tea. More than that, for those things can be done by anyone. Anyone can listen, but not care. The nurse who came to visit me today could drink a cup of tea and listen to me but it doesn’t make her my friend. What I cried for was a friend, a best friend, a group of friends, a place to belong, a place to go and be, someone to text and know they’ll reply, someone, to know that someone, with certainty, wouldn’t mind a few hours in my company. Crying from a mix of loneliness and complete shame that you’re 28 years old and listening to a party next door and feeling as though you live at the earth’s core instead, burning and alone forever and ever.

And I have really forgotten how to talk to people. My social skills are horrendous. I don’t use them, I don’t go out, I don’t socialise, and when I try to, I feel so incredibly awkward and uncomfortable and unliked that if I do (rarely) get the chance, I turn it down. And it’s a vicious cycle and it’s not one that’s unheard of. In fact my story is so modern and boring. Replacing all human interaction with interaction online (and I’m not even worth it or charming here, either).

I have no life and no real person (apart from Robert, who often isn’t here, and who bears the brunt of my loss of social skills- babbling out and rambling everything on my mind I saved up for a week) to confide in that I don’t really know how I’m supposed to speak. I have one drink and either clam up or ramble incessantly, disclose too much personal information for the sheer joy of someone to share with, ask too many questions, and then feel so exposed and embarrassed I don’t speak again or send many myriad apologies.

I have had friends, twice (as in 2 groups of friends in my life time). The first set (and they were a set) pretty much turned against me (young, mental, flexi with the truth), and eventually that turned in to being assaulted in the street. So I left the country, and somewhat wounded and weird made more friends, but young, mental again. I am not a good friend. I’m not sure I’m a good person. This isn’t self deprecation- I am very moany, I am very self obsessed (this much is obvious). In the past I have been indiscrete. But they were lovely but I interminably needed “looking after”. People like me less the more they know me. If I could stop at first- maybe second, because first of all I can seem rude because I’m nervous- impressions, that would be great. I have changed so much in the past 3 years that it feels like two lonely lives. I feel like I am a better person now but was better off being a worse one. Because my betterness came through being a worse one.

And so I make it, which is why I have 680 Facebook friends. We’ll never get further than that. I am not doing it on purpose. It isn’t something I can snap out of, I have tried, and at intervals have succeeded, put myself out there, was betrayed so utterly by one that I have closed myself off to anyone even remotely like her. I usually trusted in people and believed they were good and nice, and now I don’t, and I don’t trust anyone and I am not willing to even try a friendship with anyone who shares qualities she has (and she had so many good ones, too, which makes it worse). And it hurt all the more because she knew all of this about me. So back into my shell I went. And given that what I am particularly desperate for is female friendship (I am a feminist, I have ideas, I hear of sisterhood, but I am not part of it. I am not part of anything), it makes me hate her all the more, and hate myself all the more too.

You won’t like me anyway, so what’s the point. I say no often people stopped asking years ago. (Everyone lets you down. You let everyone down. Everyone hurts you. You hurt everyone).

(People out drinking! Cocktails. Being in a house that’s not theirs. Go to gigs and festivals and have inside jokes. Do people really live like this? Make phone calls to each other and talk and confide? Is this what people do?)

After a while, you get so used to being lonely that it’s so hard to break out of it.  You become so insular and analytical and that becomes who you are in the end. I don’t like going far from home. I am used to time being mine- to waste (I think of all I could have done with my days and nights alone- hundreds and hundreds now. Learned an instrument, a language, to drive, wrote a novel. Instead I just sat and watched other people live their lives and retreated into my own little dreamworld). I seem like the most boring person in the world because I don’t do anything because I’m too scared. To go to the pub. To go for a walk. To pick up a phone. To go to a protest. Followed everywhere by that sense of inadequacy, it’s much easier, much more controllable and manageable, to just live with it at home. As much as my loneliness makes me cry, I am so protective now of that lonely time. When people are here I feel as though I’m putting on a grand performance even making a cup of tea (they have not been here).

And people are so kind. On Facebook and Twitter, people are lovely. It’s not as though I don’t share my life- I do, too much. No-one is cruel so why am I afraid? I don’t know. If I could snap out of it easily, just go, “Fuck this”, I would. At times Robert has broken with frustration at me and shouted, which only makes me feel worse because I don’t want to be this way, I never have. I know some people would be reading this and feel offended. “But I thought we were friends? I thought you valued me?” I do. If you think I value you, please believe me that I do. I value so many so much. I think of people often, and of reaching out, but can never quite make that step.  When I do it’s en masse- huge anxiety about wedding invites for people I didn’t see again afterwards, birthdays, housewarmings, which all feel farcical. Attempts to reconnect but realising you haven’t seen or spoken to the invitees in ages, or sometimes not met them at all. But it’s trying.

And you go through the cycles. Depressed, manic, weird, not weird, sociable, retreat, happy, sad, withdraw. Even when you’re well  you expect these things to happen, and when you are well, other people remind you of when you were ill. They’re almost like symptoms in themselves- the secret keepers, the holders of the memories of things you want to forget.

And there’s the other massive thing- having no fucking energy to socialise anyway due to medication. Wanting to crash after work, wanting to sleep all weekend. Feeling too dead, and feeling I have nothing to talk about anyway. What do people do when they get together? Talk about their lives? What have I got to say?

I know I am anxious person who has self preservation as their utmost goal because I have needed to. I know all this and yet it doesn’t help.

I have people I care about and love, and who may care about and love me, too (I think?) I am luckier than most. What is wrong with me? (This question reverberates around my head)

If this has sounded accusatory in parts, it’s not at all meant to be. This is nobody’s doing but my own.  I am aware that a lot of it is self perception I don’t know how to change. I could probably un-lonely myself if I just pushed myself more. But I am too scared. And now I’m used to my own company which luckily I mostly enjoy.  It’s not up to anyone else and I don’t need or want to be “saved” from my loneliness. With other lonely friends, talk of tea, meeting up, and it never happens, because none of us can save each other.  But I am lonely.

Are you?

A World without Rik Mayall

I don’t write about other things much in this blog, but the death of Rik Mayall means that I bloody well will. Because Rik Mayall was brilliant, and now he’s dead, and I just wanted to write a short bit about how ace he was, and what he meant to me.

I’m not one to sneer at people who show emotion when a celebrity dies.  Although the hyperbolic, competa-bituaries sprout up as soon as the heart-clutch hits the ground, I don’t think that it means that the grief isn’t genuine. Of course we don’t know the celebrities who die. We grieve for the person as they were to us, a little piece of our own history, and of ourselves. And it feels like a little bit of you dies with them.

And that’s the case for me with Rik Mayall.  He was as interwoven into the fabric of my childhood as those I shared school desks with, the scratched names on trees, the scraped, red-raw knees. Growing up, comedy was (and still is) the ultimate kiss-it-all-better.

Rik Mayall had that elastic, silly, manic energy that was magical to a child. The flailing limbs and swivelling eyes of a childhood tantrum. How can that be gone? Rick was the kind of spotty adolescent oik that older people laughed at but the younger people (well, me) secretly wanted to be. And as an adolescent myself, with my copy of the Communist Manifesto in my leopardprint bag and vocal, uninformed political arguments, who I became in some ways.

I wasn’t born when the Young Ones first aired, but it was one of first VHS videos we asked for when we got a little combi TV. Being a bairn growing up in West Belfast, I didn’t get the satire, but still found this hilarious. Especially Stephen Fry’s complete underreaction to getting a jug smashed over his head, as if he’d gone through life like that.

On my ninth birthday, when I went to the swimming pool in Andersonstown, I wasn’t allowed in because I whipped the blue towel of my bag and did this:

reciting lines from, “Holy”. It was Richie’s face I pulled behind my teacher’s back.

And Drop Dead Fred was my first love. It’s a strange film, wildly varying in tone, either a meditation on mental illness and abuse, or a live action cartoon. But as a lonely child, Drop Dead Fred was my ideal boyfriend. A cheeky sidekick, a partner in crime, someone who who would stand up for you.

As I got older and worked backwards, I found the Comic Strip Presents (Mr Jolly Lives Next Door, Bad News and Dirty Movie are amongst my favourites, though Ade Edmondson and Peter Richardson are the stars of the best- Eddie Monsoon- A Life and Strike!), 20th Century Coyote, the Dangerous Brothers and Flash’s turns in Blackadder.  As well as the execrable Guest House Paradiso, which I hated, but which my little brother absolutely adored. This was my growing up and away, while the love of Rik and Ade was passed to the younger generation. And so it goes.

Rik Mayall is part of a sense of humour that got embedded deeply inside my own personality and psyche, even the way I cope with life, and it’s strange that now the world doesn’t have him anymore, and that the next generation won’t have him either. A world without Rik seems a little more boring and grey.

Living in a Scar Suit- the summer edition

Edit: Before I start, I want to say that these are my feelings on my own self harm. I’m not talking about yours, or anyone elses’. This is my post about my body and my experiences.

Just a bit of a whine really.  When I’ve written about self harm here before (take a wee look at the comments page of this entry, it’ll lead you to the others), it’s been with reflection and optimism. I don’t feel that way today about my scars. Just pissed off. Stupid. Now that the sun is out, I look like a bloody zebra. A slither of sunlight on my arms turns my skin red and the scars whiter. Freckles pop out. It looks terrible, and it makes me feel like a fucking fool for what I’ve done to my body.

I can’t buy into all this, “your scars are a reminder you’ve survived” stuff, and all the other things self harmers tell themselves so they can live in the scar suit. I don’t view them with any profundity, though I’ve tried to. Increasingly, I see my self harming as a teenage folly gone way, way too far. Perhaps that’s just me trying to protect myself from the reality of what I did- to distance myself from it so I don’t get lured in again.  I would have stopped at the self-conscious scratches in my early teens, I think, if I hadn’t been practically dared to go further as a way of proving that I was in real distress, not just faking it. People dismiss scratches but not the deep, lacerating gorges I eventually wrought onto myself. I was only 13 (or 12?!) and was experiencing the start of getting mentally unwell, and the anger imherant in encroaching “womanhood”. What a stupid thing. A stupid thing especially because after the experimental scratches  (the reason I started self harming was because I’d read an article about how self harm was awful yada, but what I focused on was that they said it helped them when they were depressed) which got a, “What the fuck are you doing?” responses, I hid my self harm.  I was proving nothing to no-one, I was just getting deeper into a terrible coping mechanism for my mental health. And when it was discovered by my parents I was still self harming, they went mental, my mum especially. Having pleaded, cried and hidden all the razors, she kicked the crap out of me in angry fright.

I haven’t self harmed in years.  I have sometimes been close to it, but present enough in my mind where I can think about the pain, the embarrassment, the difficulty hiding.  Not the pain during- it rarely hurts during for me- but afterwards.  Of getting clothes on and wincing, fabric getting stuck and reopening the cuts like a zipper every time it needs to be torn off (every time, every day, every night), of crying from pain the bath and shower, of shrinking away from touch and not being able to stop myself yelling out if someone touches me, of trying to get into bed covering my cuts and being so ashamed of them I put pyjamas on that I have to peel off in the morning. The embarrassment of feeling like a dickhead, of people noticing and giving you that look (I’ve never gone to A&E for my self harm though on multiple occasions I should have. But I’ve heard enough stories of how shitty people are treated there to put up with the disfigurement and pain than to get myself help- I do not advise this and I wish I had gone sometimes). It was, to put it bluntly, a pain in the hole.

But the scars haven’t faded as much as I hoped they would. They’re still pretty severe, and there’s no way I can pass them off as anything other than what they are. There’s no hiding them if my sleeves are up. Crucially, most stupidly of all, I cut my face once, and I have little cat-whisker type scars on my cheeks. What a stupid fucking twat I was for doing that. Suffice to say, I was hardly thinking straight.  I was going through one of the worst times of my life, mentally. So I could let myself off the hook. But I can’t. Every time I look in the mirror, I think, “You stupid cow.  You’ve hated your face and your body all your life and you gave yourself a bloody good reason to”. Maybe that was half the point. I grew demented having body dysmorphic disorder but people telling me I’m beautiful. Liars, liars!  I *wanted* them to tell me I was hideous so I didn’t feel as if I were losing my mind. Well, here, you can’t keep lying to me now. Knowing, in retrospect, that my beliefs were quasi-delusional, makes me want to scream at myself even more for what I’ve done to my body.

Now it’s summer and the world is out in thin cotton dresses and short sleeves and I am, as usual, hoodied and cardiganed up in increasingly dark and dour clothes (having gained so much weight, I’ve completely lost my style, too. No idea how to dress myself at this weight. No money, either).  I have worn my sleeves up a few times outside, and in the garden.  I roll my sleeves up at work if I’m too hot (often, because I chronically overdress, and don’t feel comfortable or safe unless I’ve got a coat), which is progress.  But then again, I work at a mental health charity so you would expect them not to be shocked or discriminatory about self harm, which they aren’t.  No-one has ever commented and I’m sure I’m not the only one who works there who has self harm scars. But when my sleeves are up, I’m so aware of it, and so distracted by my own awareness that I tend to eventually roll them back down again.  When I was doing my nursing degree (I quit that last year- did I ever write about why? If not, maybe I will), I wanted to shrink into nothingness when I had my sleeves up.  When one nurse demanded of me when I was in a patients’ room with her (and the patient had taken a fucking overdose!), “WHAT HAPPENED TO YOUR ARMS?!” I wanted to disappear. I didn’t know what to say. I hated that, here was a patient and yet now because of my very visible marks of past distress, I’m the patient. One of my placement coordinators was also very rude about them and I felt humiliated. I have a good sense of humour- it’s my best defence- so responded in quips. But I felt like crying when she left the room.  Crying from shame and also anger.  Crying that for the rest of my life, I’m going to get comments on something which is as relevant now as an old leg break is. Permanent. Forever.

I’ve considered asking for surgery but they are too multiple, and it would leave me with new scars.  When I met another blogger who also self harms, she gave me some camouflage make up, which did a great job of hiding the colour (but not the texture). I may use it this summer. It’s not that I’m afraid of peoples’ reactions in the street (and you do get them), it’s the feeling of difference. My scar suit doesn’t suit anything. There’s nothing I can wear that makes me feel confident. Even with the (hot, itchy) make up, I know they’re under there.

I hate my scars. I think they’re ugly. I hate that when people see them, I can see their mind working. They’re filling in my past for me, and my future.  Abused, they think, unstable, they think, angry, they think, impulsive, they think, attention seeking, unsafe, unwanted, mental, violent, aggressive. They fill in the space where I’m standing with someone else.  Literally marked for life.  And it’s maddening.

It’s happened a lot with doctors and nurses, especially. Before I even open my mouth, they’re telling me my life story.   And I want to reply:

It’s one of the reasons why I find myself asserting all my little trappings of the Normal Person. LOOK, I’M MARRIED! SEE? FUNCTIONAL RELATIONSHIP! We watch Netflix! We do boring bullshit together! I don’t just sit there whacking chunks of my arm while he plays a sad song on a cello in our dank basement! LOOK, I WORK FULL TIME! AND WORKING FULL TIME IS WHAT THE MENTAL HEALTH GATEKEEPERS SAY MEANS YOU’RE A NORMAL SHINY RECOVERED PERSON WHO HAS NO PROBLEMS AT ALL! I’m not going to eat your babies! I’m worthy of being treated like a human being!  etc.

Yeah, I hate them. If I could go back 15 years, I’d do two things.  One, I’d smack the first cigarette I smoked out of my paw and say that I’m going to regret inhaling that more than anything else I’ve ever done in my life, even if Dearbhail looks cool doing it. And two, I’d have become distracted by a cat or something when I picked up that article. I never stood a chance, though, given I was also a fanatical Manic Street Preachers fan. Then I’d have scrawled somewhere in the notes of the Holy Bible, “Look, Richey was brilliant, but he was fucking miserable and he went missing.  If you’re struggling to cope with your mental health, and all the trappings of adolescence that will make you hormonal and even more unstable and confused and looking for something to cling to, then take up a nice, socially acceptable way of coping, like drinking heavily.  And then, in 15 years time, you can look back and laugh at it all with your mum and da…

Oh”.

 

Dropping out of 10k

I’m just letting you all know that I won’t be running the Bupa 10k this month.  Lots of people have sponsored me and it won’t be in vain- I’m in touch with Addaction to do another fundraising thing later in the year, something bigger than 10k when life isn’t totally shit. I’m not just sacking it off and I promise I will earn the sponsorship.

The reasons I’m dropping out- over the past few months a lot of stressful stuff has happened.  I’ve been struggling with my mental health and with resulting exhaustion.   I have found it much harder than I expected- not in a, “oh, running is hard” way but on a, “oh, running is hard on antipsychotics and customary winter total lapse into low mood” way.  I keep judging myself by Normal Person standards. When I have gotten out to run, I’ve injured myself- once with an asthma attack and twice with ankle injuries.

But all that aside, I planned on powerwalking the fucker if I couldn’t run it and was intending to spend this month doing loads of walks (I’ve done a lot of walks already).

And then we had the greatness of our new flat (we only moved in 2 weeks ago) going on fire due to the landlord’s negligence with electrical safety and me ending up in hospital and now wrangling with our landlord who seems totally unconcerned that we could have died (and I didn’t only because Robert wasn’t working that night- he was the night before and would usually either be there or asleep. There was no smoke alarm) and is leaving us with a bombsite bathroom, a smoke damaged flat and me feeling quite traumatised, and coughy and now having to spend the next few weeks in a fight and trying to sort the place out and also possibly having to find somewhere else to stay for a while.

We’re alive, obviously, but it’s the latest in a long line of, “OH FOR FUCK’S SAKE”.

I am at the limit of what I can cope with and I can’t take the next three weeks worrying about doing more training or failing at the 10k.  I know I should persevere but I am struggling to cope right now.

I feel awful and shit about this and like a total failure and if anyone wants their sponsorship money back, please let me know by emailing me at anne dot elk at gmail dot com.  I will be doing something else later in the year- probably not running, though.

I’m really really sorry and I promise I will do something even better when things aren’t totally shit. Thank you to everyone who has donated to me.

And usually I support squatting…

My other website (google my name Seaneen Molloy, you’ll find it) has been nicked and is now being squatted. I have no idea if I can get it back, I seem to have lost everything on it. Just so you know, there’s nothing there now but spam. I am a twat. I forgot to send the Paypal to renew it and now it’s gone forever. 

Thanks so much to Bekki Williams for hosting me so generously for so long. I’m sorry I’m a forgetful eejit.

If anyone has any ideas about how I can get my stuff back, I’d love to hear them 😦

Archive has saved a fair amount though:

https://web.archive.org/web/20121211032601/http://seaneenmolloy.co.uk/

Control- Or, Why I Haven’t Written a Book

People ask me why I haven’t written a book. And because I promised to clean the kitchen earlier, I’m going to sit down and tell you. And it might sound really pretentious. In short, I wasn’t mentally or emotionally capable of writing a book and dealing with the fall out. In long…

I actually had a literary agent in 2009-2010.  A proper one. I met her by accident. She casually emailed me, having found this blog, to ask me in for a chat. So I went.  I’m always up for a chat. I will speak to anyone. A beautiful office off Leicester Square, with this beautiful woman,  bare feet under her desk.  I didn’t think the chat was an interview. I went in there with talc all over a skirt and unwashed tights. I talked about writing a book, maybe. I’m a writer and I want to write a book.  Writers write books. Semi popular bloggers write books. I didn’t actually realise she was a literary agent- or the director of the company.  She was both.  She was one of those women who awe me- tiny little scrawler, benefits crawler.  She was disarming and friendly, wickedly funny and clever, and believed in me. I hoped we’d be friends.

I remember running out of the office to Robert, in blinding sunshine, skipping and dancing. I was going to write a book!  I would do what I had always wanted to do- be a writer, a REAL writer. Not just a blogger, not just someone on Facebook.  I could write a book people keep on their bedside table like I kept, “The Bell Jar” on mine. To find comfort in. I might even get a little advance.  We walked through rich London, past restaurants off-limits to patchwork stigs like us. I held his hand and pointed at menus.  “One day”, I said, “We’ll get dressed up and I’ll take my advance and we’ll eat in here”. It felt like I was entering a whole new world.

It never was, of course.

The agent was lovely.  She sent encouragement when I flagged (often), once even a box of fancy tea and biscuits, which was utterly appreciated because at the time, I could afford neither (fancy or otherwise). I felt cherished- when was the last time I felt like that?  I took the impoverished writer thing and ran with it. Or lurched. Because it’s hard to write a book when you haven’t got the distance from yesterday.  I could put my thoughts down- even use my blog- and be honest. But honesty is terrifying enough when you’re writing words you can hide.  Ones that are published, in ink, and can never be hidden? Pulped, maybe, but read.  In someone’s head, inaccessible to me. I can’t say, “But…”

Then my diagnosis was changed by my psychiatrist to borderline personality disorder. It sent me into a tailspin, because I had spent the past 4 years on a punishing regime of medication, trying to come to terms with things, medication I apparently didn’t need, terms which apparently were not mine to accept. My CPN had written letters about it. In retrospect, it was the best thing that ever happened to me.  I’d gone there to talk about stopping medication. He approved and the predictable happened. But what I also did was realise I had a lot more control over my situation that I had thought. I’m not saying everyone does. But I did.

I had relied on the bipolar crutch too often. I knew what everyone wanted, the, “Bipolar Memoir”- the most saleable of things. I didn’t want to inadvertently speak for a community I maybe wasn’t even part of.  Highs, lows, glamour, despair- but above all else, blameless. It’s a precious identity. This outside thing. You are the centrifuge. And that wasn’t me. Maybe I still had the bipolar aspect. But what I had ignored, always, painstakingly ignored, was that I had a lot of trauma. Festering memories. Pain, scarred all over my body. Things which I minimised but which were hurting. And the BPD diagnosis made me look at them- really look at them.  It was time to deal with them.  And I did, and eventually I stopped self harming. All of my BPD aspects disappeared (whether age, or insight, who knows). My moods didn’t, but it was still a win for me. To face it all, and still be facing it. Crushingly self aware in many ways, infinitely more anxious in others. But I am a person. Neither borderline nor bipolar was who I was, who anyone was. I am a person and not a set of diagnosis. Not a set of symptoms. I have a history and a future and it’s not all there in a few words. Not even in 100,000.

And at the time, I didn’t feel like I could write a book anymore, when I hadn’t come to terms with those things myself. Things weren’t as simple as I had thought they were.  Bipolarity was half the story. Maybe not even half.  These weren’t just things that happened to me. They were things that were happening to me.

“Can I fictionalise it?” No, because I am the product.

How much of yourself can you give away? How much can you believe your life is fundamentally interesting? How much can you sell?

So I couldn’t write a book when I wasn’t sure myself of what my story was. When I didn’t want to sell myself. There were things I wanted to put down, so much. I wanted to write and write about my dad. The good and the bad. To immortalise, somewhere, somehow, somewhere else than our brains and our increasingly mosaiced memories.  He existed, look! He was here. We are here. I wanted to write about West Belfast. The oddness of growing up in the shadows of a mountain and the British army.  Of having parents with mental illness. Of being working class. Underclass. I wanted to write about the silly things. The annoying things. They things that make you a person. It’s what everyone wants to write about. If it was just those things, I would have written it. But my narrative, my, “angle”, was never clear cut. No-one’s is. And at that time- 24, before I began to really get better- I didn’t have the distance, the objectivity, or, in fact, the balls. 

If I wrote a book, I could never go back. It would be there, forever.  These kind of books require confession. And how could I confess to sins I didn’t know I had committed? I didn’t want to be unfair to my mum, or my siblings, or my family. To my relationships, to my past, my present. It was very much not the right time. I couldn’t write a book that I could never take back, and I couldn’t write in the state of mind I was in, which was always worse than I let on. Those people who are not people, but who are ideas of people filtered through me.

So I didn’t. The agent and I lost touch- she probably exasperated by my flakiness, which became total inertia.  I couldn’t lose the control I had over my own story. I couldn’t submit my history to editing and blurbs. Because it is so dreadfully important to me to have that control. I have this space. I can be uncomfortable in others. I don’t get Twitter sometimes- the flying of the deleted tweet unnerves me. I’m not good at brevity, I can’t do 140 characters, and all my views are grey, not black and white.  These are my words, my thoughts. Ones I’ve had to reclaim, from the child telling her teacher she’s being bullied, to the teachers telling me I’m too ill for school, to psychiatrists reframing my experiences in their language (mania, hypomania, depressive, panic disorder etc), to the government telling me I am worthless, to relationships telling me what I feel is wrong when to me, just feeling is so important and the most integral part of being alive, of wanting to feel, to argue, to talk and talk and talk.

I have regretted it, lots of times. Sometimes I think what an opportunity I wasted. I’d happily take Clare Allen’s job. Self consciously, I have always thought of myself as a writer and always wanted to be one. And I could have been one- and how would the back sleeve have looked then? A smiling face, a glorious kitchen. A fallacy. I wasn’t recovered- not even close. Mad people are only allowed to write retrospectively. Not while being mad. What kind of blurb would have stood astride it?

I’ve seen friends of mine (talented, hardworking friends) become Proper Writers and feel as though I’ve been left behind. Wasted the one big opportunity I had, in the world of Proper People. Probably desperately uncomfortable, probably desperately alone. With a book that was false and awkward. But with a book, with a book…

Now? I could probably write a book. But over time, I have come to appreciate the aspects of my life I don’t write about here. Don’t want to. And you have to. When I started blogging, the confessional was something new. It’s everywhere now, this instant feedback on your life. Sometimes unwelcome. Sometimes asked for.

I still want to be a writer. I have no idea how. Nobody is interested in me now. Nobody would want to be my agent (which I would need as I am horrible at self promotion). Maybe the time has passed. “The Secret Life of a Late Twenties Charity Worker”. That kind of kills, in some ways. This is my life, nearing 30, and I’m not a writer yet. But I still do a lot of what I love. I am glad that I didn’t write my 2010 book. How would I have ended it? It wasn’t the end. It’s not the end.

Dear Edwina, Thankyou for last night. I hope it was as good for you as it was for me. #bigbenefitsrow

I love Jack Monroe.

COOKING ON A BOOTSTRAP

Dear Edwina;

It’s 9 o clock on Tuesday, the morning after the night before, where we were both on a panel on The Big Benefits Row on Channel 5. I haven’t watched it back, I was there, and know what I look like when I’m angry.

I need to get this out – because it’s everything I wanted to say last night but couldn’t, as I kept being rudely shouted over by you. Honestly, my three year old behaves better than that. At least he knows that when Mummy does her ‘will you just be QUIET and LISTEN to me’ then the best thing to do is to stop running your mouth and let Mummy say her piece.

But you didn’t. Because you were terrified of what I had to say.

I wanted to say, when asked by Matthew Wright, that poverty is almost indescribable to someone as blinkered as…

View original post 965 more words

Self conscious post

This is a self conscious, “Ooh, I have a few new readers at the moment and it might be a bit depressing round these parts so here’s something silly at the top” post. It’s been a tricky year but 2014 will be better.

In the meantime, you should listen to this song.

Withdrawal

So once again, I am attempting to get off Quetiapine.  Oh so many reasons (weight gain, think I might have developed diabetes, flatness, spending ALL my spare time sleeping, not being sure I have manic depression, not being sure I believe in manic depression actually existing), but the biggest one being I don’t think I need it. My psychiatrist agrees with this. (Although recommends keeping an, “In Case of Emergency” stash). It’s been six years on varying doses. I am doing it sensibly this time- i.e titrating. Everyone around me, including my manager, knows what I’m doing. I have gotten down to 100mg and so far:

I feel like I am permanently on the edge of flu

I am itchy as fuck

I am feeling overemotional and tearful and hypersensitive

My brain is racing again and I can’t concentrate

I keep getting electric shocks in my hands

I feel nauseous and my appetite is decreasing (the latter is good, I have gained 5st in a year on the higher dose).

My sleep is fecked- I am waiting up constantly but still feeling drugged when I wake up (I slept well yesterday though, but that was an ills exhaustion-medication combo)

I just don’t feel like myself.

I thought this would get better, as it’s been a few weeks, but some days are worse than at the beginning. I think this is also partly because my immune system is a bit fecked right now so I’m picking up the ills along the way.

I don’t know whether to credit Quetiapine and other medication with my stability these days, or to credit getting older. Was I ever ill in the first place? Or was I just young and someone who had gone through a lot of trauma? As I’ve grown older, I have begun to accept- painfully, often- the trauma I’ve experienced and realising it’s had an impact on me.  I haven’t had a, “(hypo)manic” episode in about 2 years. I had a depressive one a year ago, and it was pretty bad, but in general, I am just an anxious, analytical person.  I am always a little bit hyperactive or a little bit low, it’s what I’m like. I do realise my sustained, “episodes” deviate fairly markedly from my, “baseline”. I do know they come out of nowhere, and I know what that suggests. But either/or, I don’t think any of that is bad enough to warrant taking medication for the rest of my life. For a long time I have thought that, and have begun to think that the medication is keeping me unwell.  Not in an anti-psychiatry way, but that the side effects are outweighing the benefits.

25mg is the dose I am dreading. That’s when total insomnia will come and I’ll have no choice but to power through.  The last time I got there, then 0mg, I had rebound psychosis from insomnia and it was quite scary. The police had to be called because I thought our house was being robbed and barricaded myself in a room. I felt almost instantly okay again when I took 400mg and slept for 2 days and I hated that.  I hate that my normal is being drugged up and exhausted. I hate that my normal is knowing, every day, I’ll probably die 20 years younger than most people I know because of my medication and its effects.  I just don’t want to do it anymore.

I am slightly afraid, though. Afraid of all my emotions pouring back and of not being able to cope with it.  I do think my medication has helped keep me sane over some of last year’s trauma, because they held me in numbness, suspended me in fatigue and flatness.  Maybe all the years. The flood that might be coming terrifies me. But I’d rather be drowning than be alone, forever and forever, on my dry little island.

I’ve gotten off Lamictal and Prozac already- wish me luck.

Panic- fun and games in the back of an ambulance

Hello, been a while since I updated here. I’m pretty knackered!

News for those wondering- I didn’t win the Mind digital award, which I didn’t expect to.  Thank you for your good wishes, though. It was won by the lovely Charlotte, who thoroughly deserved to win. I still had a fun night, and when the winner was announced, I could finally go for a wee I had nervously held in for hours. It was good.

I had a bit of a shite experience last weekend.

Now that’s weird…

…I didn’t actually publish the, “Now I Am Six” blog post from earlier- I have no idea why it did publish.  It’s from May 13th….EXACTLY 6 months ago…

Totally freaked out! Wah! Ghost blog!

Let’s be clear – Tory and Lib Dem MPs have decided terminally ill patients should work or starve

This government is inhuman beyond parody. There should be riots in the streets about this. What is happening to us?

Pride's Purge

(not satire – it’s ConDemNation today)

Back in 2011, Conservative and Liberal Democrat MPs joined together to reject an amendment which would have exempted terminally ill cancer patients from benefit cuts.

They decided that if you are diagnosed with a terminal illness such as cancer – but have been given more than 6 months to live – you will have to work or starve.

Here’s a previous blogpost about that:

The government has finally done something so outrageous even I can’t be bothered to satirise it

This decision by coalition MPs was so outrageous that after intense lobbying, there were some concessions made by the government.

However, in a bizarre piece of upside-down DWP logic, it now seems that if you have less than 6 months to live – you will be refused benefits.

This is from the Chester and Ellesmere Port Foodbank blog:

Jenny

Jenny came to the…

View original post 342 more words

Sponsor Me for the Bupa 10k in May!

Hello everyone!

A quick and cheeky post.  I am running the BUPA 10k in May 2014.  I am legendarily unfit and have never even run for a bus, but I want to raise money for the addictions charity Addaction, in memory of my dad, Paul Molloy, who died from alcoholic liver failure on May 17th, 2006.

It’s going to be a HUGE challenge for me so I’d appreciate anything you could donate. You can sponsor me here:

My Justgiving Page

Please share if you can and thank you!

I miss my dad.

My dad had a camera attached to him for the first 10 years of our lives.  He documented every mundane moment.   He painstakingly developed them, and kept almost every photo he took.  They live in a box in my mum’s house and have been vanishing over the multiples moves she’s undertaken since he died. I have a few of them.  The photos begin to tail off when my baby sister was a toddler.  My dad was too lost to drink then to keep taking photos. I hate that there’s scant evidence of her childhood.

There was a photo of me that he loved so much he had it blown up into A4 in dramatic black and white.  I’m about four, face on, staring fiercely into the lens. I don’t know if I’d just woken up and was grumpy, I don’t remember the photo being taken. But he loved that photo and was proud of it, and proud of the person in it. It was one he showed me often.  Even I could shyly admit I looked beautiful in it, looked, probably for one of the first times, like a child who was becoming their own person.

I tore it up one day, in a fit of teenage pique, when I was learning how to hate myself.  He was hurt. And I regretted it instantly, and I still regret it, to this day.

I think the look was a little like this one.

My dad hurt us a lot with his drinking. But sometimes I’m floored at all the little things I did to hurt him, too.  I remember, always remember, how his eyes looked when he was hurt. When he was drunk, dewy. Sometimes, they were dewy when he was happy, too.  I remember that less.

I miss my dad.  When you think of what a life is- that there is one- it brings me to my knees that his life was so brief and so desperately unhappy.  Despite us, five children. Sometimes, I think, was it because of us? Other deaths and lives don’t have that burden on their children.  People who die of natural causes and not things like alcoholism can have that gift, of a, “life well lived”. To know how cherished and loved they were, and how much they cherished and loved in return.  I don’t have that. Either way, I don’t have that and I regret it utterly. My dad was often infuriating, abusive and hurtful and in rages, I would be the same. Always his reflection, even now.

I didn’t even mention him in my wedding speech. I regret that, too.  It wasn’t a conscious omission. I wore his photo in a locket around my neck. I worried that if I talked about him, I would never stop. I didn’t want to cry, not that day, but cried later anyway, for different reasons. I wish I had let myself cry for those ones. Why, why have I spent the seven years since his death trying not to cry?  I only cry over my dad when I’m drunk. Why did I spend the years of his life trying not to? It is so hard to watch someone you love destroy themselves. Despite pleading with them, begging them, screaming at them.  Doors torn off the hinges and kicked through in premature grief, from all of us. Like I tore up my photo, he tore up the letter I wrote him when he was in a psychiatric hospital. We were asked to tell him what effect his alcoholism was having on us. And for a while, it seemed like we’d gotten somewhere. But they all went to pieces, in spite and because of. Even now I wonder if I had chosen my words too carefully.  From the back of a CD, some pretentious teenage book I was reading. Using it as a writing assignment to hide from the reality of what was happening to him and to us. Of that squalid little hellhole hospital and its yellowing rooms, and his rancid bedsheets and yellowing skin. Too blamefully, too artfully, instead of writing it from me.

The photos help. We were happy, sometimes. He was happy, sometimes. When he stopped picking up his camera, that’s when I started. He left us some money- not a lot at all- when he died. I bought a camera with mine, his last gift to me.

This picture wasn’t taken with that camera, but on his last Christmas with us, in 2005.

He wasn’t a great dad. But he was our dad.

The tattoos me and my siblings have. “Remember to live”.

He was someone who didn’t realise how much he was loved. And if he didn’t realise, then who else doesn’t?

The Recovery Myth

And I fear being mad again, when newlife, largely lonely, is hurtling towards me. Career, kids, marriage (I want them all, I could have them all). Don’t be mad, not again. Even the sniff makes me fear, I blink at the glare, deny everything. From open, to closed.

So now I am recovered from mental illness. Now I can pass for normal to the untrained eye, one that isn’t looking too closely into my own glazed, unfocused ones. I do Recovered Person Things;  I work, I take public transport and people sit next to me, on a good day.

Whoever was doing the PR for tampons was doing them for mental illness
recovery. The same euphoric aerial splits celebrating the joy of
working Coke machine, the same toothy grin over a latte with your
girlfriends, the giant kitchen, with holy glittering worktops awaiting
a weekend of salad preparation for the family- all this will be yours,
if you get better. A life, they call it. A normal life.

And deep down a part of me sighs, “Don’t believe the hype”. Recovery can be a more profoundly lonely experience than the illness itself. Years have passed now, like a dream. But if it were a dream, then nobody else would remember. But they do, and better than I. Vignettes of a life I had forgotten before I even finished living it are bold A4s in other peoples’ brains. How jealous I am of my memories being locked in other peoples’ brains! And afraid I am to ask for the key. A part of me does not want to remember.

I had expected that after four years, I would one day fling open the door and see a line, stretching far down the street, snaking around the corner and into the road, the people who I had hurt, bored, confused, frightened and bored again waiting, wreathed in smiles, bedecked in flowers, overflowing with forgiveness, welcoming me back.

Back to… where? Somewhere I have never been, as someone I have never been. In the four years of the regrettably necessary self-obsession required to Recover, I had stopped asking about the lives of my friends, the lives of my family, the lives of people I had loved, or could have loved and who could have loved me. In time, they stopped asking me, too. They had Real Lives. They have promotions at work, fall outs, nights out. I had the stasis of the still-sickening, of an inner-life with no outer life. My most exciting trips were to hospitals, or onto the pavement. If it is dull to me (and it is), it is even more dull to them. And rightly so.

You find this too, when you recover. This is not cancer, not even close. You can’t whip your sleeves up and show your self harm scars as a mark of how far you come. That’s bullshit-speak from social workers trying to salve the pain of you destroying perfectly lovely parts of your body for the rest of your life. No-one is interested in your inspirational tale. In fact to mention it you’d think the earth’s axis has shifted ever so slightly one centimetre as people have the irresistible urge to be drawn backwards. Really far back. I’ve made that mistake before. I thought that now I was stable (but not normal, never normal and untainted) everybody would be happy for me. Bumping into an old school friend, the conversation goes like this,

“Oh, hi, Seaneen! What have you been up to?”
“Oh, hello! Well, I’ve been mad for a couple of years! But I’m fine now! Just off to get a sandwich. What about you?”

With no outer life, or at least, with a less of a socially conventional outer life if your mental illness knocked you into a ditch somewhere, you may have lost social skills. How do you talk to people when you’re not a little high? (Slowly, by the way). How do you have a conversation that doesn’t revolve around what your
psychiatrist said that week? (Bullshit, as usual). It’s okay- practice on strangers. Which you’ll be doing a lot since, as mentioned above, you have lost most of your friends in the period in which you were mad and trying to be less mad.

If you were lucky, you might have made some nice mad friends to keep you company. They’ll be really happy for you when you recover and
start to claw your way back to normality. Which is how it should be. Except, some of them think you’re a traitor. Some of them are genuinely pleased for you, but then you find that aside from talking about your mental problems, you don’t really have that much in common anymore.

Where do you go then? Into a new life, with new people. And what do you tell them? What of the past years? What did you do, where did you come from? What did you do? Where did you come from? The answers make you dumb.

Five Years- Still Alive

This day seven years ago, I was admitted to a psychiatric hospital and thus began my love-hate relationship with the mental health system. I remember- noise, pacing, star jumps, skipping brain, Silence of the Lambs on repeat, Leila, stripey socks, more pacing, telling the nurses I had to be let out because I had an important interview at Scotland Yard (and this was true!), haloperidol, flowers, Connect 4, Lithium, bloods, tight hand grips, tourniquets and smoking.

Almost 5 years ago (in 2 more days), I took an overdose after a year of depression and one very ill-advised prescription of Effexor. I am still alive.

The memories I have of that night are sickened- sweat, vomiting, screaming for my dead dad, having a seizure and knocking myself out on the desk, the paramedics seeing my breasts and still feeling aware enough to be mortified about that, everyone here worrying since I posted while off my skull, feeling angry that the doctor dismissed my overdose as, “over a fight with a boyfriend”, when no such fight had taken place, when I hadn’t even inferred it, he was at the pub, but as a young woman in a scar suit, it must have been why, not the year’s worth of depression, not the hyperactive energy burst of medication, as a young woman, my life revolves around the men in it. 

Wanting a toffee crisp and the kindness of friends. More vomiting. Friends cleaning the flat so we didn’t have to return to it. Rob’s centring calmness when I knew how afraid he was. Me pretending I was alright afterwards, when I really wasn’t, but I felt so silly and ashamed of myself.

Nothing has been simple since.  It’s easy to forget how bad things were, I guess. My life revolved- and still does, to a large extent- around trying to stay sane.  I feel more sane than I ever have, PDSQ questionaires to fill in tonight aside.  (What is an, “upsetting experience”? I wrote down 3, then added in the margins, “Not sure these count”).

I’ve hidden a great deal of posts from when I started this blog, cowed and blushing over my quite dogmatic nature then. I was only 21. I should reinstate them, even if they’re embarrassing. I’ve seen other people do the same as me- when diagnosed with someone, deny to begin with, then grab at it like a rope to a drowning man.  It took me a couple of years to realise I was more than my illness.  And a couple more to realise it would always be there, humming in the background like a twatty passenger on a bus. But it wasn’t as bad as I thought and I’m not afraid anymore.

October is my bad month. I have crashed almost every year for 10. I’m still here. Fuck you October. In your face.

The Mentalist’s guide to… putting on your make up

Back in the day, I wrote a tongue in cheek series of posts called, “The Insane Guide to…”.  They covered topics like looking like shit at a psychiatric appointment, mixed episodes and medication.

Over the past day on Facebook, a few mentally interesting folks have been making makeup tutorials, actual, useful ones like the Youtube ones, which I can’t link here as they’re on Facebook.  Did you know you can put liquid foundation on with a brush? Because I didn’t.

This is my response.  It features wine, Wagner and a lot of strong language.

(Should go without saying this is a joke and I am not a sweary alcoholic).

We’ve been talking about making more of these. Like, “How to Unmat Your Hair After 5 Days Without Brushing or Washing It” (a personal one for me since my hair naturally dreads after a day).  And some more practical ones like leg waxing, which I’ve never done, so it would be ten minutes of screaming.

Anyway, it was silly fun making this so if you have any suggestions for videos you’d like to see, let me know!

Trauma

So, it’s a day for speaking out. (PS: I still haven’t stopped smoking) One of those blogs that says nothing and something.

Some people who have known me for a long time are surprised I am still alive. In a nice way, but they are. One friend in particular, who has known me for a decade but who I see very infrequently, is flabbergasted that, generally speaking, I’m an optimist.  I believe things will work out.  More than being an optimist, I believe I have been lucky. That’s what caused him to drop his fork and go guppy-mouthed for a minute.

This isn’t a cheery, “Why, aren’t I brilliant” entry where I list just how my Positive Mental Attitude has helped me overcome. It hasn’t.  The uncomfortable truth is that I’ve been through so much traumatising bullshit that I think I exist in a permanent state of being dazed. I overcome because nothing affects me so deeply anymore that it feels world-ending. I overcome because I have built a wall over my heart so thick that the plonky arrows tipped in flame and shit just bounce right off now.  I have killed a part inside me so that I can continue living.  Some call that strength. Sometimes, when I let myself feel and am curled up in a corner (rarely, so very rarely), I would call it sacrifice.

The childhood traumas which we have gone through, and which I don’t discuss here but which I bought up with a therapist who chuckled, thinking I was exaggerating, then went silent when it became clear I wasn’t, have affected me and my siblings in different ways. I have always downplayed the effect trauma had on me developing a mental illness- I wanted to believe it was all biology, all chemicals. Then I could mute and numb and realign my neurons and be normal.  It didn’t work that way- no matter what you hear, it never does. My mum very likely has bipolar disorder, and my dad was yer classic alcoholic depressive, so there’s probably something amiss in my genetics. The wick was there and trauma lit the fuse. Or, the kindling effect. 

Trauma continued into my adulthood- my dad’s death, my own illness wrecking havoc on my life, some losses, some recent stuff I do not wish to discuss but what my GP thinks turned my panic attacks into full-blown panic disorder- but I never really talk about it. I’m more comfortable with moods, with the sterile language psychiatry gave me.  More comfortable with saying I have avoidant personality disorder than I am messed up due to trauma. There are times when I realise-acutely- that I am the walking wounded. Some things remain.  A complete shutting down if someone shouts at me. The panic and despair I feel if I can smell alcohol, anywhere, when I wake up (if we have been drinking, I put everything in the bin before bed). Always preferring to drink bottles instead of cans because the “ttssst” makes me foetal, and being hyper-aware that I am honest, always honest, exposingly and stupidly and nakedly and anxiously honest, because I was a teenager that lied and don’t I don’t want to become a mother that lies.  I panic when something I’ve said turns out to be wrong or false in case it looks like I lied. Terrified to make friends in case they all turn on me again. A general feeling that nothing and nowhere is safe, a horrible gaping need for someone to be proud of me.

I move in mental health circles, with fellow mentalists and fellow people employed in mental health, and retain a unique respect for people who talk about trauma, who talk about PTSD. I’ve been completely inspired and awed by some people I’ve met recently.  And I have a certain jealousy, as I wish I had the bravery to be someone who could talk, and, because they could talk, get help, get comfort, and love and hugs and understanding which I cannot get, because I cannot talk. Because I can’t talk, I can’t open up, because I can’t open up, I can’t belong, because I can’t belong, I have no-one to talk to anyway.  I am wary of putting everything on my husband. It backfires, and it is too much.  When I do talk, it’s inappropriately, to the wrong people, at the wrong time, so I don’t want to talk anymore. It squeaks out sometimes. Usually when someone is telling a story and I get rushed by a memory. But I despise people pitying me and want to be judged on my merits and not as a some sort of sad sack who needs to be coddled, so I usually follow everything up with a joke or a laugh.  Because I don’t want to be pitied, I can’t spend more than a minute feeling an emotion that would instill pity, therefore, the kind of, “That was shit, have a hug” validation that I probably need will never come. I can’t ask for what I need because I can’t bear to be pitied because I am self pitying enough as it is and don’t want excuses to be more so. Sometimes, I ridiculously feel I am not pretty and delicate enough for a hug, or to receive sympathy, or pity, or anything else.

Don’t get me wrong- I know how hard it is to talk. That’s why I am awed.

But I am lucky. You can have a shit past and be traumatised and still be lucky. I feel lucky. Things do generally work for me. Jumping off my nursing course, with no safety net, I jumped into jobs I loved. I was lucky. I am still alive, and I am lucky. My trauma isn’t as bad as so many other people I know, and I am lucky.

On the last point, people close to me say, well, it is pretty bad.  And unless you begin to feel that it’s pretty bad, you’ll always be traumatised. But what if I have? What if I have just accepted it’s awful and shit and I’m okay now?  Is this okay? Am I kidding myself I’m okay or am I kidding myself I’ve constructed a defence mechanism? Maybe it is nothing so elaborate than just being over it. Maybe, when I find myself ducking and shaking on a train, or staring at my scar suit, it is not.

Quitting smoking- anyone want to join me?

Fnar. I specialise in making mildly amusing images.

So I’m starting, once again, Allen Carr’s Easyway to Stop Smoking (which you can download for free as a PDF here). I’ve read it before and it was the closest I’ve come to being smoke-free. Then a very stressful few months hit and I started again. Then I enrolled in an NHS stop smoking group, took Champix, descended into terrifying suicidality within a week, and started smoking again because I figured it was better to smoke than to kill myself.

But I spend a fair whack of my waking hours thinking of how my 20 a day habit is going to kill me,  then paradoxically reach for the cigarettes to calm me down. I know this is bullshit- I know the cigarette is relieving the craving, that the simple, present and solvable anxiety of a lack of cigarette moves into to try to swallow the darker, irresolvable, unfixable and eternal anxiety about mortality.But then feeds it, and so on.

I want to stop. To be free of at least one anxiety.  I’m also ashamed of the fact that my husband started smoking when we first got together having never been more than a social smoker. I would never, ever forgive myself if he got sick because of his smoking. I want us to be around for each other as long as possible. Forever (that it can’t, it slays me). Yes, he’s a free person, but it is hard not to smoke when someone you’re close is constantly puffing away- when waking, after dinner, after breakfast, in the street, for celebration, for commiseration.

And that’s a fallacy, too.  I do something catch myself on the logic and go, “What the feck am I doing? Smoking a killing cigarette to celebrate this (anything)?” I feel like a total dick when I do, but then, I’m already smoking, so may as well just carry on.  It’s the same when I see people huddling under some awning in the rain (where I am, too) and just befuddle at our collective madness. And the stench of a heavy smoker in a lift and the realisation that this might be what I smell like (but I can smell bugger all anyway, thanks to cigarettes).

So does anyone want to join me? I know smoking and mental health stuff is a bit complex (which I wrote a lot about in March. MARCH?! How was that March?! It was yesterday! What the hell has happened to this year, it’s flipping terrifying). But I’d be happy to sticky this post or make it a page and we can chat and support each other, or if you’re on Facebook, I have a page for this blog or could make a group (Mentalists against Menthols?). And have a Twitter circle when we’re feeling cravey.

And if not, that’s fine, too, but I’m writing this statement of intent anyway, because it means I can have my arse kicked if I don’t. Hooray!

EDIT: Made a Facebook group here called the Secret Life Smoking is Rubbish Rabble.  Feel free to join in! It’s a closed group so I’ll approve membership and we can talk in super-secretness. And if not, then me and my sister will have our own cool group.

Remember Forever

Have a few things I want to blog about, including Lethal Discrimination:

For years we have been shouting about how people with severe mental illness are at risk of dying up to 20 years before the general population, often from preventable physical health problems.

Today we’ve published a new report to demand that the Government takes immediate action to stop Lethal Discrimination against people with mental illness. But we need your help – will you write and ask what is being done to turn the tide?

Which I’ll get round to and which you should go and read.

LOL at annual health check. I’ve been on antipsychotics since 2007- still waiting.

But I’m feeling quite low and have been all this week. I’ve been off work with the physical ills, so it’s probably a lot to do with that. Got so much I want to say and no energy to say it. Having that feeling of shyness when you’re up on a podium and you’ve forgotten your notes.

I just feel quite low and I hope it’s just a little thing, but I can’t help but glance at the calendar and sigh.  I went to see my GP on Wednesday and she had some interesting things to say. The CMHT didn’t do my CBT referral, but had sent a letter questioning whether I needed straightforward CBT or something more complex.  Just straightforward CBT, so she did the referral.  I hadn’t really explained things properly to the psychiatrist when I saw them (about actual moods- June last year, when I was fine) because I was in a good place. I forgot my entire history. Crisis teams, hospitals, being so depressed I dropped out of university.

“You have to forget”, she says. “If you remembered all the time, how could you carry on living?” And a discussion about how

you can’t feel pain once it’s been felt. It only existed in those moments of feeling. You can remember the pain but never re-experience it.  I remember, vividly, the pain of riding my dad’s bike with him. It was a bloke’s bike, so had a crossbar. It went, “thump” down a kerb and impaled me onto it with such force, I stiffened and fell onto the ground and my dad had to hold me while I wailed. I can remember that pain, but I can’t relive it. I have almost 40 stitches in my leg and arse. Half torn apart by Lassie’s teeth (and it was, hilariously, Lassie.  A long-snouted collie). It hurt. I remember that it hurt. But I don’t remember how it hurt.

“If you could relive mania once it was over, then nobody would ever get the crushing lows that follow. If you could just will it, then you’d live there forever”.

Which is true if hypomania didn’t become the tearing destructive force of wandering the streets with a bottle of wine and talking endlessly and banging the walls screaming in rage and willing the vicious energy into the brick on your third day awake. And the same goes for depression. Once it’s passed, you can’t remember, not really, how it felt. At least for me.  A murky Other person. (Hypo)mania is remembered never by me, but by others. It’s probably the bullet loading the gun. The shame of not remembering, and of being remembered when you don’t. Of having a part of you not in your own possession. That doesn’t belong to you. Not again.

So she’s doing the referral, and we had a happy little conversation about death.  About the, “essence” of people.  I’ve never felt it. I wish I did. While she was talking, watching her face melt into beatific peace, I wondered if I’m just failing to feel the essence. Surrounded by little ghosts. Maybe there is part of me that still hasn’t come to terms with my dad’s death. And Brendan only a year later. And Vicky when I was 15, and it was my introduction to violent death, to what suicide really is, and now what I can’t forget.

I kept a grin and willed myself not to have a panic attack on the blue (always blue) chair. And dug my nails in. It’s an interesting intellectual conversation. Keep talking about you- not me.

And physical stuff.  A disbelief I’ve gained another stone. Sticking me on the scales (I wish doctors would just take my word) and measuring my height (I am 28- I have not grown). An acknowledgement it’s probably my medication (I have had to increase the dose of Seroquel). An investigation- mostly for my sake, I think. Not for my health, but for my vanity. Surely if I was really in control I wouldn’t now be 81kg? (And I’m 4ft 11″).  The medication is definitely a part of it. I ate a whole trifle in my sleep.  I woke up to its remains. I was quite impressed by that.

More blood tests. I’m an old pro with needles now.  And it’s not so horrible visiting the nurses with my arms as improved as they are. Four years! And yet, people still ask, as irrelevant as asking what your four year broken toe means. It means nothing now. It’s healed. The bone is back in its cradle.

Let me be.

Mentalism and Motherhood

I get emotional over the tree in our tiny garden in Peckham.  Which is silly.

But I watched it bloom into beautiful blossom in the spring…

and drizzle pink flowers every time the breeze blew…

…and, to my surprise, the delicate butterfly-blossoms became apples, which twatted me on the head every time I went to hang the washing up…

Not pictured: me swearing.

…and grew big enough to be picked (or picked up, as in this case) and eaten.

And the apples will disappear, and the tree become bare and anonymous like it was when we moved here last year, then it’ll blossom again and, again, become laden with fruit.  And the cycle will repeat. We didn’t do anything to make it happen. I thought the tree was dead when we moved in. All it’s had is rain and sun, and it lives on.

My friend Ben insisted it was just a useless little crab apple tree, but it wasn’t. (And crab apple trees aren’t useless anyway). 

I want to be part of a cycle.  Of that cycle: of renewal and birth and endlessness.  Even though I have PCOS, I just assume it’ll happen. Granted, those aren’t great reasons to have kids. But recently, I’d been broodier than usual (as has my husband). Awwing at the photos of babies my friends post on Facebook, wanting to be part of that seemingly perfectly imperfect life. My friend, a mother of two, wisely told me, “Having kids is like a bomb going off in your relationship”. But I want to be standing in that wreckage. Not the sometimes-inconsequential feeling neatness of now.

If you follow me on Twitter (I am there as brain_opera), I probably depressed you the other day by posting the heartbreaking Daksha Emson inquiry. Daksha Emson was a psychiatrist who committed suicide, in the violent way horrifyingly typical of women with postpartum psychosis, by stabbing herself and her baby daughter, Freya, then immolating both of them.  Daksha survived for 3 weeks before succumbing to her injuries, and Freya died at the scene. They were both found by her husband, David.

Daksha died in the perfect storm.  A psychiatrist, she worked in a profession with stigmatises their own having mental illness.  Whose illness was downplayed, “doctor to doctor”. Daksha had bipolar disorder, and, although she experienced periods of unwellness where she was hospitalised (and had ECT, on one occasion), she managed to excel in her field. She took medication and didn’t have a relapse in the 8 years she and her husband were married until she became pregnant.

When I was a nursing student, I attended a conference on perinatal psychiatry.  If I’d stayed in nursing, it’s where I’d have liked to specialise. It was a fascinating day.  Firstly, we looked at how infants develop, and how vital those early attachments are.  It’s why mother and baby units, which keep them together and help support the mum and partner, are better than just chucking the mother into a psychiatric ward.

We watched a video of some mothers who were experiencing psychotic and depressive symptoms while caring for their children in a mother and baby unit.  We saw the baby’s increased agitation due to the lack of reaction from the mothers.  The Still Face experiment illustrates this:

Then, we saw the improvements, in both mum and baby, a few months later when the women had recovered.  We learned (or at least, I did), how peri/postnatal mental illness can often strike those who one would least expect; first time, middle class mothers in their thirties. And this in itself is where women like Daksha were let down. How could this high-achieving psychiatrist and mother become mentally ill?  As the inquiry says, isn’t mental illness for, “the great unwashed”? And when the great unwashed do get pregnant, they don’t experience the trauma those professional women do of becoming a mother, the role that’s been created for them since the universe began, which they must now inhabit fully, and which everyone is else is watching you shape yourself into. Surely?

Dr Margaret Oates (who has a mother and baby unit named after her) was there. She spoke acidly of cases where women, clearly unwell, were discharged from services with the label, “personality disorder”. One mother, who was previously diagnosed with bipolar disorder, was deemed to instead have a personality disorder and sent home with antidepressants.  “And what happens to a woman with bipolar when you just give her antidepressants?”, she snapped. She got worse, walked into incoming traffic and died.

Daksha Emson had bipolar disorder.  Postpartum psychosis is so closely linked that it’s sometimes called postpuerpal bipolar disorder. The inquiry into her death states that doctors must assume one will become ill, not the other way around. Therefore, it’s all about that lovely phrase we all know so well as patients and practitioners; risk management.

But that’s complex in itself. A woman who becomes unwell in pregnancy, or who was already taking medication for a pre-existing mental health problem, might be limited in her choice of treatment.  Then they may have to- or want to- stop taking medication so they can breastfeed their child. They can become unwell astonishingly quickly.  There’s also the shame factor. The shame factor that permeates all mental ill health, but especially mental ill health when it’s supposed to be the happiest, most wonderful, shiny, Mothercare advert time of your life.  Where do you even start with that? We’re shamed anyway for having mental health problems, then further shamed for being women- how much shame and guilt must a new mother feel?

Then the father of the child, if he’s employed and you’re with him, might have to go back to work after two weeks.  It becomes easier to hide how bad things have become. In the shadows, they disintegrate. And the stress of looking after a new life, utterly dependent on you, would take its toll on anyone- lack of sleep, worry about the infant, recovering from childbirth, financial implications, everything.

Afterwards, I asked to spend the day with the perinatal psychiatry team at a local hospital.  The nurse explained who was referred to their team.  I felt the blood rush to my head as I read:

Referrals are essential for women with:

• Bipolar Affective Disorder
• Schizophrenia / Schizoaffective disorder
• Previous Postpartum Psychosis
• Severe Depression
• Other psychotic illness
• Family History of Postpartum Psychosis

I have (or probably have, I haven’t had a hypo/manic episode for 2 years and my recent psychiatrist who has only seen me well and heard me speak with a very, “I’m okay” now spin on things) bipolar disorder and my mum had 2 episodes of postpartum psychosis. It was strange to see it in black and white.  Here is your future.  This is what your pregnancy is going to look like.  Someone asking you questions.  Somewhere, you’re going to be a file and they’re going to be watching you. Someone’s going to come and visit you and someone is going to know more about you that you’re comfortable telling them. They might take your baby away. They might take your baby away. They might take your baby away.

I should have felt relieved.  Isn’t for the best that I’d be referred if I was pregnant?  Isn’t it good I’d be looked after and had some support? But it still scares me because it feels like an intrusion- another intrusion in a lifetime of intrusions- by mental health services into my life.  Resenting bitterly that mental illness may steal another part of my life, that mental health services may be the ones who define it at all.

When I was initially diagnosed, I was advised to think twice before even becoming pregnant. I did, briefly, a few years ago and I did become unwell, first with depression, then with hypomania, but that could have been the circumstances of the pregnancy rather than any sort of organic reason. What would happen now?  No matter what has gone before, I have imagined myself pregnant and beaming with a wanted child. Well, happy, blooming then fruitful.  I blot out the fact that pregnancy and having children is one of the most stressful things a couple can do and that a quite shocking amount of partners have affairs during these periods.  And that my husband isn’t great at coping with me when I’m not very well (but he’s getting better, and I know he’d be an amazing dad).  And that I live in a tiny flat and I’d have no money and wouldn’t be able to cover the rent on SMP. And that I take antipsychotic and antidepressant and mood stabilising medication and have tried to kill myself. And suicide is the leading cause of maternal death.

Oh, that.

But then I wish someone had been there when my mum was suffering when she had my brother and sister. I can’t remember what happened (particularly when my sister was born, because I was still a far-off idea at the time), but I do remember she thought there were rats in the bath, blood, that my brother was some sort of god and that she was mad for years after- still is, really- and that my dad’s drinking got worse and worse until it killed him.  I try to tell myself that just because it happened to her, it doesn’t mean it will happen to me.  I’m not married to my father, and my father was an alcoholic, and I’m not. I’m not living her life, in her circumstances. I’m not her. I’m not her.

And even if I was, how badly did having two parents with a mental illness affect me?  On a good day, I’d say, “Ach, hardly at all”. On a bad, I’d be flung back into a cobwebby corner of my memory where I’m hiding behind a door with my hands over my ears listening to my parents scream at each other, and the years that followed where I spun in my mother’s confused untruths, not sure what was true, not sure what wasn’t and remember my joyful time in CAMHS.

I have my brother and sister, though. I have them.

On balance, though, I think my experiences have had a positive impact on my personality rather than a negative one. I grew up to be compassionate, to want to help people, to be independent since we largely had to look after ourselves, to value creativity as a way to express myself when I lived with people who could be wordless, and to be someone who stands up for themselves and for others. On the downside, I’m one of those people who struggles to make close relationships (and this scares me about having kids- who would help me? Who could I ask?), who runs away when people try to get close to her, who is super-sensitive, who seeks validation too often, who feels overburdened with a sense of responsibility and guilt for things I can’t control, and who shuts down if someone shouts at me as it throws me back into the centrifugal force of my parents rage. (And yes, I’m aware that my traumatic upbringing and subsequent traumas have probably contributed a fair bit to me being mentally interesting. But I certainly don’t blame my parents for that. They’re people, first). But those things don’t hold me back to any huge degree and the slightly reclusive part of my personality is one I’d miss having, too.

And they weren’t always like that. Sometimes, my parents were wonderful.  It was something I was wildly jealous of when my dad died- other peoples’ memories of their parents. I had friends who lost their parents to cancer at similarly young ages to when I lost my dad.  But their parent, “battled”, was, “brave”. Was proud, was strong, had friends, were blissfully and memorably ordinary. They had coffee with their parents and bought them places, to events that didn’t end with them screaming at them to stop, slumping into sobs.  I was so jealous that, then, all I had left of my dad were horrible memories.  They were the ones that floated to my mind when I thought of him. Memories that drenched me in shame and regret, regret of such a short, wasted life, and shame that we weren’t enough for him to want to live for.

But as time has passed, I remember more good about him.

I understand he couldn’t, “just” stop drinking. I thank him for the good influence he had on me. To be silly, to be strong, to read. I mourn that my children won’t have him as a grandad, to be bounced on his leg like he used to do me.  Now whenever I talk to my somewhat transformed mum on the phone, I ask her to think about getting herself a wee fella.  I hate the thought of another life not being lived, being wasted without love, without someone, even a good friend, to share with.

And on the plus side of me not really being close to many people, I have a lot of love.  Tons of it, pouring out of me, for anyone to have if they want it.  So that’s something.

But my parents were never really helped for their problems.  No-one really supported them when they needed it, when we needed it. How different things might have been if someone had recognised they needed help. These somewhat self-regarding entries are a protection.  A way of acknowledging what could happen.  Save yourself by being self-aware in case there comes a time when you can’t be.  So it doesn’t come.

So I think I need to give up any expectations I have of pregnancy or motherhood, both good and bad. I may not suddenly have a giant gleaming kitchen and long, russet hair (it’s purple right now, but for some reason, when I think of my hair when pregnant, it’s long and not falling out like it does during pregnancy and russet and smells of apples, the latter being a probability considering we are currently buried in them) and have that kind of flattering slimness that accentuates my bountiful bump (I’m newly obese again, so that’s not going to happen anyway).  I may not have a husband who’s endlessly patient with me and who listens to my stomach like a shell for the sea and sings to me (I fucking hope not- he’s the most effortfully bad singer I’ve ever heard) and keeps everything clean and is never bad tempered and never misses sex or the nights out with his previously young wife and the nights in with his previously girlfriend. He won’t become depressed himself and will continue to bring me coffee and breakfast and call me beautiful.

Likewise, I may not go mad and may not end up struggling to bond with my baby, and may not be like my mother, and may not spend every waking minute thinking I’m a shit mother and a shit person and shit feminist, and may not have to come off my medication and if I do, I may be fine, and it may, may be, just a gloriously ordinary time of my life, like it is in the lives of lots of women, like it is for lots of women with mental health problems, too. Apart from panic attacks, I’m fine now. I may continue to be fine. And even if I wasn’t, it’ll all be worth it in the end.

I hope so.

P.S: I’m not pregnant, don’t worry.

P.P.S: Daksha Emson is an exceptional case, hence the inquiry.  Although women can be so unwell they commit suicide and take their children with them, it’s incredibly rare.  And what has changed since they inquiry?  Not much.

P.P.P.S: If I’ve depressed the shite out of you with this entry, here’s some Eddie Izzard:

Mind Media Awards/You Take It With You

Hello!

Firstly, hooray! This blog was nominated for a Mind Media Award in the digital category! Thanks so much to whoever nominated me, it’s lovely.  I feel a bit awkward and have that Irish tendency to shrug off praise with, “Aaaah” then starting a conversation about how grand the weather’s being, so I’ll leave it at that, but thank you.  Thanks to the shortlisters, too, for not printing out a copy of this blog and then setting it on fire to show your displeasure.  It’s a bit nervewracking as aceness abounds on the shortlist, such as Purple Personage. They’re new, exciting, well-written and switched on, whereas this blog is now six.  Six, in digital terms, is when t’was all fields around here.  Things have changed so much in the digital world, in such wonderful ways.  I’m glad, somewhere, my increasingly mumbular witterings still resonate with someone, and, hopefully, help others who are stumbling on their way.

So thank you!

If I don’t win, I have awarded myself this. I thought these were a myth. But they’re a crispy, slightly off-tasting reality.

If you want to read more mental health blogs, go to the World of Mentalists where there’s a weekly round up and a generous, afternoon-sucking blogroll.

The nomination has prodded me to update this blog. I continue to stumble a bit meself.

I wish when we haul the overstuffed suitcase out the door, we left the mentals hidden and small somewhere under the clothes strewn across the floor, to gather fluff and dust while we saunter, tanned and trouble free, in a Somewhere Else. (I am aware, too, of the ridiculous privilege in being able to go Somewhere Else, even just for a few days).

I hadn’t slept before we left and my anxiety kicked in at the train station.  A man was being frisked down by security, then his bag popped open.  It contained at least 50 bottles of shampoo and 20 tubes of toothpaste.  Robert tried to reason with me that maybe he just really liked being clean, but I was convinced (irrationally) he must be a terrorist with bombs in the tubes, some squirty, white bombs. I’d been looking forward to the surrealness going through a tunnel into Paris on my birthday for ages but it was ruined by my white knuckling paranoia and almost having to be forced onto the train.  The whole time I was hypervigilant and almost fainted in relief when we got to Paris unblownup.

I panic-checked my bags for my medication- another thing you can’t leave behind.  It meant that we didn’t do anything til late afternoon every day, which was okay as it was incredibly hot. I had to keep pretty much the same routine as home- being hoisted awake by Robert and fed coffee under I was marginally more coherent, then waiting another hour or two before being able to walk and talk in public without being hit by a car or mistaken for being drunk. I’m used to this by now as it’s been my life for 5 years, but on holiday, I just want to be normal. I want to be like everyone else and not drugged and exhausted and floaty from anxiety.  I wanted to fall asleep listening to the sounds of the Parisien night, and not to whatever I’d put on my laptop to stare fixedly at to stave off a panic attack.  It’s why I find Christmas, Easter, birthdays and every holiday hard, and I know I’m not alone in that.

My actual birthday, for all I worried, was fantastic though (and only one panic attack, hooray). I was awoken by a lovely pastry, we went to the park and drank beer in the sun, got lost in the Marais and were then led by a kindly French man to a restaurant he liked, had dinner, went back to Montmartre and opened the fizzy wine Robert had sneaked earlier, sat on the steps of the Sacre Coeur and Robert put candles in an eclair, kept aflame by Parisien youths singing, Joyeux Anniversaire, then met an artist and went back to his flat and listened to music, then asleep by 6am. It was a good ‘un.

31 and 28 and stupid faces.

 

I am trying to make a conscious effort to will myself into the present so I don’t just let myself float away on anxiety. If I think too much I start to panic (or not at all- if my brain empties, panic moves in to take the space, because my brain’s a total dick) and I feel completely exhausted by it.  I’m also trying to keep myself a bit present as I’m entering my mood-danger zone.  This time of year I always become depressed, and I don’t think I can handle that on top of the panic stuff, so I am trying very very very hard to keep my head above quicksand.  This week hasn’t been so great as I’ve been tearful and hypersensitive but we’ll see eh.  I’m sure you’ll all be riveted when you read my yearly depressive breakdown post.

Otherwise, though, things are good.  I’m still waiting for therapy and beginning to think it’ll never materialise.  It’s the panacea of CBT, which, although is the first thing tried for panic and phobia, I’m inherently cynical about as it seems to be the psychiatric version of paracetamol, just chucked at everyone, for every ache, no matter how sharp, no matter how persistent.

I’ve known people who’ve had fantastic experiences and people who’ve had dreadful ones.  What worries me if that the model is is making sense of the irrational, whereas my problem is I have rationalised myself- rightly- into a corner. So, I’m not sure how it’ll go.

Anyway, just wanted to say, “hello” and thanks.  Excuse the listlesness of this post but I feel a bit listless today, it’s been a weird (nicely so) one.

And if you’ve followed a link and it’s your first time here, hello, and here’s some posts to have a read of.

Time marches on

I’m 28 in 2 days.  Or possibly tomorrow, since nobody knows when my birthday is. (I was not, contrary to rumour, found in a bin).

Me running towards my daddy, behind the camera that was his 5th limb for a decade.

27 has defined, “the best of times, the worst of times”.  Absolute aceness mixed with arseness. I’ll be glad to see the back of it, though things have been looking up. And yet, to see the back of any year fills me with dread.  I sat today in the park near my house and read (Primo Levi- cheerful stuff!) and cursed myself for not appreciating the summer sooner. How many we will see? And etc. But I’ll be in Paris with Robert so shall enjoy that.  And have had a lovely few days celebrating our first wedding anniversary. One year already! What the hell.  Life is brief and strange.

I’m a ray of sunshine, me.

I feel quite apprehensive about this one, due to my recent freakouts.  Is 28 old? Oldish? How was 28 for you?

And I have been writing this blog since I was 20. OH DEAR. This blog is older than some little people I know.