Me talking self harm on Metro’s “Mentally Yours” podcast

Absolutely lashing with sweat due to illness, and having just burst an eardrum by being stupid, I went to a restaurant in West London to meet Yvette and Ellen of the Mentally Yours podcast in which, now having listened, I was surprisingly coherent in retrospect.

I don’t find self-harm the easiest topic to discuss. It’s pretty hard to without getting a bit graphic, so a warning that this podcast does have some fairly graphic language, as well as a few fucks, because it’s me. I haven’t self-harmed in 8 years, but because I live in a scar suit, the reaction my body gets from both the public and the medical profession means I may as well never have stopped.

It’s also not an easy topic to discuss because everyone is so different.  The hardest question I was always asked when I self harmed was, “Why do you do it?” I know the circumstances I self harmed in, the houses, the rooms, the ritual.  But the why, the visceral, deep down why, is mostly a mystery to me even now. I tried to explain here as best I could, the same way I tried when I was a teenager and was confronted, badgered, hectored with the, “Why?” from everybody who in turn wanted to understand their own anger, rage, disgust at it.

I talk about why self-harm might be on the rise in young women, on which I wish I’d said more. What I didn’t mention was my feeling that there’s an earlier sexualisation of young bodies, and self-harm can be both a fuck you to that, and a way of acting out self hatred.   I also touch a bit on the trivialisation and dismissal of childhood and teenage emotions, and of their trauma, and the unfathomable things children endure and can’t express (and bear in mind I blocked someone on Twitter for asking if I had self-harmed due to something like a teenage crush on Boyzone, so do refrain from making fucking stupid comments like that please).

And I chat about coping with scars and what led me to stop, how I stayed that way, and some advice to anyone who might want to hurt themselves.

Thanks for having me, Metro! Have a listen.

 

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.

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)

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!

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!

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.

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*

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… 

Getting married while mental

There are lots of things a bride-to-be has to consider.  What will I wear? Are people going to fight?  How on earth will I be able to wee in a giant dress?  Is it acceptable to be drunk at your own wedding?

But with our wedding day speeding towards us, there are things I have to consider which, quite frankly, I wish I didn’t have to.  Mentalism.  Butt out!  Can’t you just go one day without bothering me?

The first big piece of advice I got about wedding planning was, “Make sure the excitement and stress doesn’t make you ill!”  Well meaning, of course, but it’s not what you want to hear.  Of course, weddings are stressful (I had no idea how much until I got engaged, if anything, it’s the politique that is the most stressful, especially when you do not want a big wedding and are doing it on a shoestring but a lot of cultural expectations dictate this and that) and you hear about people turning into, “Bridezillas” and having a breakdown before the day, being carried down the aisle with a limp arm resting on their minivan-size dress.

The sad thing is, though, I knew they were right.  I have spent nights up frantically clicking on photos of dresses and poof! A night’s sleep is gone, just like that and the next day I am a bit, OOH.  Worse, though, is the happiness side of it, the excitement which can tip someone over the edge, but it’s okay, my deadening, zombifying medication takes care of that.  I’m allowed to be stressed, but not excited.

We are having our wedding at 3.30pm on a Friday afternoon, not because we particularly wanted a late afternoon wedding, but because there is the very real possibility that if I take my stupid medication I will either sleep in or be so drugged I will slur, “I do” and panic my soon-to-be-husband’s family that he is marrying an alcoholic.  Or worse, be so drugged I haze through it, unfeeling and unthinking, as I do a large proportion of my life. I am genuinely afraid I am going to be absent on my own wedding day.

There’s the other consideration, “Oh shit! My arms!” Besides what I wrote in my last post, I really don’t want to have my arms out, I would just be too uncomfortable.  They look frigging awful in photos, too.  So I am less thinking, “I’m going to get a pretty dress” and more thinking, “In what way can I cover my arms and not bake in August?”

And, of course, the expectation that a bride must be A BEAUTIFUL FUCKING PRINCESS and, for someone with body dysmorphia and a past eating disorder, it’s unsurprising that some of my latent anxious behaviours have kicked right back in.  On this count, at least, I have finally admitted some uncomfortable truths to Robert, which is the first step in me taking back control.  But I saw myself on video a few days ago and went into a mad tailspin of being unbelieving I looked like that, and suddenly could not bear the thought of people looking at me, and they will be.  Unless I staple a veil to my face. And body.  I find social interaction incredibly nervewracking too so what the hell am I going to do?

I also worry that I will wake up two weeks beforehand and be nailed against the wall by depression.  Robert knows how swiftly, how severely it can hit me, out of nowhere, like the big stupid wanker it is, and says it’s fine if we need to cancel the wedding because of it, knowing the day will not cut through the fugue (because absolutely nothing does). But that is kind of my worst nightmare.

All this said, though, I am delighted to be getting married to the love of my life.  Urgh! I hear you boke, but he really is.  He is my messy, silly other half, my first love, and my last.  He is wonderful and he makes me extremely happy. I am excited about getting up in front of my family (alas, Granny Molloy-less, she is too frail to come, and minus my dad) and friends and saying, “THIS ONE HERE, I LIKE THIS ONE THE BEST”.  I’m excited about having our first dance, eating cake, buggering off back to our hotel and then frigging off on honeymoon for a week.

(We are going to Rome. We have a honeymoon register as we don’t need household stuff here: http://www.honeyfund.com/wedding/robertandseaneen which apparently you are supposed to post on your wedding website?  Who has one of those? All this stuff is an etiquette minefield.  But I’ll be 27 while I’m in Rome!  I lived to 27! Jesus!).

And most of all, of course, I am delighted and excited to be marrying Robert, and to be spending my life with him.  He is pretty cool.

But this all brings uneasy questions to the fore.  Uneasy in their, “This should be easy” and it’s not.  Children, for example.  I do really want to have children.  I have had “those” discussions with doctors that have ranged from, “NO” to, “Be careful”.  And we will be careful.

But can we handle children?  We are intelligent, mature and loving people, but one of us has the tendency to go a little mad.  I spent some days in perinatel psychiatry lately.  And it was terrifying to be confronted with my possible future.  It was another imagining- like my wedding- were mental health makes an unwelcome intrusion.  If you have a history of manic depression (technically, I’m not sure I do, but it is probably that, let’s face it) or if your mother has had postnatal psychosis (mine has), you get an automatic referral to their services.

“Services”.  I spent such a long time worming my way out of them, and I may worm my way back in.  I am glad these places exist, I think perinatal and postnatal illness is something that should be given more attention.  But to exist within them?  It is not how I imagined my pregnancy.  I thought it would just be me, the dad and our big lovely belly.

I have been pregnant once before.  And the circumstances were very different, so it probably affected my mental health with them being as they were.  But hormonally and physically, within a very short period of time, I was a mess.  I was crying constantly. I found what was happening to my body utterly distressing.  I lost my shit and it took a very long time to recover it.  But again- could have been the circumstances.

But I have also seen my mum when she was ill and it was extremely frightening.  And with lack of sleep being der rigeur in new mums, I wonder if I will go the same way as her.  It scares the shit out of me.

And then as a mother.  I know lots of mums with mental health problems who are great mums, but there is a chance I won’t be.  I had a shitstorm of a childhood which has given me a fuckload of issues. I don’t want to repeat those things, I don’t want to give my issues to my children (for a start, I will REALLY need to sort out my body image). Then again, every one has that worry, it’s not just people with mental health problems.  Who may be viewed by others as an incapable mum.

Well, balls to them.  We’ll be great.  We have love! Creativity! And very sweet cats.

And if I do go psychotic and mad (and it’s quite rare so what’s to say it could happen?), at least there’s the Mother and Baby Unit at the Bethlem.  I’m lucky to live here.  Couldn’t go mad in a better place, really.  Bright side, eh?

It does, though, bring things into sharp and happy relief.  I never imagined my life would be where it’s at now.  Or that I would feel capable of having children, or even committing to another person, one who doesn’t worry about me topping myself.  Or that me topping myself is now a remote possibility, and not a concrete immovable object on the horizon.  To be sane enough to even organise the damn thing, to be sane enough to do it while going to university.  There is the trade off-medication, and I am going to need to have a serious discussion about it because the compromise is becoming too great- but all in all, I’m alright.  To be planning a future, even a rather scary one, is more than I ever expected.

(Although he is quite dangerous, judging by this video)

How My Dad Died.

Originally written in April 2007

I was asked in comments to write a story about my dad here.

The way my mind is working at the moment, I can only think of negative and horirble stories, doused in alcohol and soaked with sickness.

I have very few specifically positive stories of my dad. Plenty of lovely memories, but they are fleeting, small events like him making us Toasted Toppers or his insistence that Graham Chapman deserved a better looking boyfriend than David Sherlock.

Wedding Day

I’d never been to a wedding as a Grown Up. Nor a reception or any suchlike thing. The first wedding I remember was that of my aunt and uncle, Anne and Brian. Anne is a blonde model who appeared in speeding adverts, I’ve seen her in a bridal gown only once before, and that was on an advert on Ulster Television- “40 miles an hour!” with blood rolling apologetically down her dress. She used to come back from filming in England (“You’ve been to England?” we’d gawk at her) with those fat red dummy rocks in clutches for us. My uncle Brian is a big nosed, fresh-faced lovable man who has raised his three children to have quiet country burrs which is somewhat exotic to me when he brings them begrudgingly to their aunt’s house.

At the time I was nine years old and wasn’t taken to the wedding. My granny Molloy looked after me that day, in the only time she had ever been to our house. I remember her with her red slim face, which always looked like a warning triangle, taking my hand and us walking to the Dairy Farm, a supermarket near my house, where she bought me a pink keyboard. Then we went to the library where I proceeded to be kicked out as I was too fascinated with my first ever musical instrument. I managed to retain my dignity and my Asterix books, whereupon I rechristened myself Cacophonix.

That day I seemed to inherit a new family. At the wedding my mum met some of her family, The Mallons. Edna had a sharp tongue and fast humour, then there were her three daughters- Angela, Ceri and Michelle. Their ages corresponded roughly with the ages of me and my older sister. Michelle was the youngest so we were expected to get on. We were utterly different people so were never close.

So one wedding created a new family. The next was the day after my 18th birthday, the wedding of my uncle Michael to a quite well-to-do middle class girl called Fiona. Her family were much more respectable than our rough West Belfast one.

My uncle Michael looked like Damon Albarn. My sister Paula and I used to boast to our school friends about this. His fiancée was a social worker, tiny, buxom, blonde and beautiful. I first met her at a bedside vigil for my granda. I’d never met her before and remember feeling insulted rather than touched that she had come here while my grandad was so sick. In that respect, I’m quite traditional. For all my running-off-to-London, I believe in the family and find “outsiders” intrusive sometimes.

The wedding was in Bangor, and my dad was determined that we weren’t taking a feckin’ train that day. We got a taxi, god forbid, all of us piled into one black cab. He wanted us to be stylish, just as good as them, he said. But he was brimming over with happiness, as he always did when we were all together.

We found ourselves outside the church with a half an hour to spare and a bit peckish. “There’s a reception on later, Da,” says Michelle. Imagines of vol-au-vents, quiche, delicately decorated salmon en croute filled our minds.

But it would be hours before we had the chance to eat.

In our new clothes, we went to KFC and smeared ourselves with greasy chips and microwaved gravy. We sipped flat coke out of enormous buckets and liberally ate cold chicken.

We went at breakneck speed to the fancy Gothic church, stinking of fast food, gravy on our lips and the odour of old plastic seats sticking to our arses.

Twenty minutes later my other uncle Brendan (sarcastic, amusing vegetarian, much beloved of Paula, much resented by me for wrecking my carefully constructed house of cards) shows up, late and distressed and bangs on the window, Graduate style, to be let in. The priest shook his head and we all froze in horror and laughed as he strained to watch his baby brother getting married through a window, occasionally letting loose a fly of words that made the choirboys blush as he batted unruly twigs away from his face.

I wish

I could end the story there and that it would be Full O’ Larks. But of course with my dad in tow the day turned ugly.

He got drunk, completely pissed, and refused to be told otherwise. He was loud, embarrassing, abusive and disruptive. We ended up having to look after him, pleading, begging and crying.

I don’t think, until that point, his family believed us when we said his alcoholism was severe. But as the evening progressed and his behaviour got worse, I think it finally clicked that for all those years, we had not been exaggerating. Michelle, Paula and me were just exhausted, exhausted, humiliated and depressed, wanting to be a Proper Family out at their uncle’s wedding, instead of three ringmasters in the arena of my dad’s illness.

I have a lot of guilt concerning my dad. Not just that everything we did didn’t stop him from dying. But for childish things.

My mum and dad had prolific and devastating fights almost every night. My dad would eventually stumble upstairs, screaming obsenties. And my sisters and I would huddle in their bedroom and talk about how if we pushed him downstairs, we wouldn’t have to put up with it anymore.

We had many comical scenerios as to how we’d get rid of my parents. And they were comical, we didn’t actually want them to die but craved silence.

My dad rang me up on my 16th birthday. It was one of the periods he wasn’t living at home and I had assumed he was calling to wish me a happy birthday. Instead, he told me he was going to kill himself.

Sometimes I wish he had done. There were times when I violently wished that something, anything would end his and our suffering. I knew always that alcoholism was a disease and an addiction but it’s scant comfort when you’re in the living room with your little brother and sister trying to block out the crockery breaking in the kitchen.

I wanted something quick and painless and it would be over.

I was outside work once. At the time, a friend of mine was suffering from serious depression and they had rang me earlier to tell me they were going to kill themselves. This was sometime during 2005. I took the phone outside and tried to talk them down but I was petrified and shaking.

When Vicky died, I prayed to whatever gods there were that I would never have to go through it again. The stark memory of sitting down on the chair being told she had hung herself, the starker memory of walking down the forest the same night, vision blurring with tears, standing on the roadside we had walked upon destroyed me.

I got off the phone to my friend and lay back against a wall with a cigarette.

Suddenly, the image of someone calling to tell me my dad had killed himself flew into my head and took my breath out. All those times I wished it had happened pulverised me and I felt like the worst person in the world. The reality, the already-grief of his dying laid me on a fold up chair in tears.

I had always believed he’d get better. I held that hope to my chest, to my heart, to every minute of the day. I believed that with our help and willpower, he would recover and live to say, “When I was an alcoholic”…

The Reality of it

When it happened, I didn’t know what to do.

My dad had been in hospital for two weeks or so. It started innocuously enough. I was on the phone to my brother when he made a joke about my dad looking like one of the Simpsons. I asked him what he meant and he said, “He’s bright yellow”.

That night was a Saturday and I was alone in my flat. And for some reason, I got my mum on the phone and said, “I think daddy has liver failure”.

She didn’t really take me seriously so I told her I was going to call NHS direct. I described my dad to the nuse on the phone. Jaundice. Alcoholism and, in the background, his slurred voice.

I rang my mum back and told her I was calling an ambulance. I rang them in London and asked them to transfer me to Belfast. Rang them up and sent them to the house.

I was on the phone when they came. I heard my daddy protesting that he had an appointment with the doctor in June (it was the end of April) and that he was fine. I told my mother to keep trying and spoke to the ambulance staff, telling them I think he’s very ill and please make sure he goes.

He didn’t. He refused the ambulance and my mum called someone else, I can’t remember who, I think it was psychiatrist services. He finally went.

A few weeks passed. Phone calls here and there. I didn’t go home as nothing sounded serious. He was filled with fluid and had acute liver failure. I assumed he would get a transplant.

I had a holiday to Belfast booked on the 18th of May to introduce Rob to my parents. It had been booked for a while. I had spoke to my daddy on the phone and he was looking forward to seeing me and Rob on the 18th. He sounded fine.

On the 16th of May, while I was in work, my sister Michelle sent me a text saying daddy was dying now, right now, and to get home.

I called her, then called my sister Paula who was in the airport on her way back to London. She didn’t want to make a fuss so I called the nurse to make sure Michelle wasn’t being hysterical.

The nurse told me to come home.

Paula turned round and went back to the hospital. I had no money whatsoever and couldn’t change my flights. Jo and my boss at work started printing out train and flight times. I appealed on Livejournal for someone to help me get home. A friend lent me the money, I booked my flight, kissed goodbye to Rob and flew home.

I met my friend Tracie at the airport. She had some ham sandwiches and a bar of chocolate for me. I was filled with dread. I couldn’t, would not think of my dad dying. We sped down the long, dark, 10pm roads. I laid my head against the passenger window and stared at the greyscale countryside.

I met my sisters in hospital. I was not prepared for what I saw.

My dad was so clearly and obviously dying. I burst into tears.

When my grandad died, my drunken, grieving father shouted that the next funeral we would be at would his own.

I had not believed him. And here it was, his dying.

He was so afraid of death and that’s mostly what was on my mind. Did he know? A nurse leant over his bed and told us it wouldn’t be long. I was horrified, what if my dad heard? Was he afraid?

He was yellow and ancient and couldn’t breathe- he couldn’t see or talk and he was so clearly dying. I started crying as soon as I saw him, held his hand and tried to tell him I was here but I don’t know if he knows I was. I thought at least he would be able to talk, there was so much to say. He looked so different and my sister assured me he had only become this bad within the past 24 hours. Before that, he was able to talk and I hate myself for not going home 24 hours earlier.

We stayed the whole night in the room, holding his hand, talking to each other, going to the smoking room and watching his monitors. I’d bought him the issue of Kettering- I had thought he would be conscious enough for me to read him to him, he had wanted to read my Neil Innes interview, because he was a fan and he was proud. He’d gone round telling everyone I was interviewing him. I had been so hopeful he would be conscious. I desperately wanted to speak to him. Wanted to hear him say my name.

Michelle left to sleep and Paula left to smoke and I tried to tell him that I love him, he made no sign he’d heard, just groaned and fiddled with his breathing mask.

He kept trying to take his mask off, and we kept putting it back on. A few times he’d clutch his head, like he had a headache, like something so normal, a headache. He tried to sit himself up a few times. He tried to sleep.

He must have known we were there. He kept holding Paula’s hand while I stood on the other side and stroked his hair. It made him sleep. In his sleep, he said our names. All our names, his five children.

He said. And he did say, although my sister denies it, “I don’t want to die”. It could have been a trick of the ears but I am sure he said it. And my heart cracked in two.

He was obviously in a lot of discomfort but the doctor said he wasn’t in pain. He kept pulling out his wires and tubes- he was so scared of ending up like my granda that Paula told me he’d been pulling them out since the beginning. He always believed he’d be going home and on some level, so did I. I thought this would be a lesson, he would stop drinking and get better. I thought he was brilliant because recently he’d been sober more, and he was going into rehab this month.

Hours passed of him taking off his mask, falling asleep, waking up. The morning came, we hardly knew. About eight am or so we called our mum and asked her to come take our place for an hour while we ate something. We didn’t want to leave, we agonised over it but we needed something to eat. We expected to be there days, we were getting ready for it.

Before we left, Paula stroked his arm and said she’d see him soon. I kissed his forehead and told him we’d be gone an hour but we’d be back.

At about 8am, our mum came and we went home to get some food.

A half an hour later, the nurse phoned and told us to come back. We tried to wake our little brother up but he wouldn’t wake up. After some exhausted, frustrated screaming at him, he got up and smashed the china set my dad had bought for my mum.

We got to the hospital. Liam went to the toilet and we went up to the ward. Tacked on the curtain was, “NO VISITORS”. And my dad had died there, without us at about 9am on 17th May, a day before Rob and I’s visit. Aged forty seven, a month before his 48th birthday.

We howled. I had to go and find Liam and tell him. He was in the corridor and I didn’t know what to do or say. I just had to tell him that his dad died. How do you tell a fifteen year old that?

I remember standing by my brother and sisters and crying, I remember hugging my uncles, his brothers, and his mother, who had lost her sister two weeks ago and her husband seven months ago. It is not fair, I remember thinking that over and over.

A nurse came in and said, “Did he have a wedding ring on?” Nothing else- “NO” and then, “Did he have any gold teeth?” “NO” get out of my sight and she did and I hated her so much.

They took him away and kept hassling us saying they needed to do it now. We said wait because his brother isn’t here yet, my uncle Michael was on his way. Before they took him away we said our separate goodbyes and had our time with him. No-one will ever know what we all said, and I am glad.

They took him and we organised the wake at my grandmother’s. It was best to be there, it was his real home.

I slept after that and the next day Rob got here. We spent the next days at my grandmother’s. He met everyone in my family, except my dad. I wrote the obituary with my little sister and it appeared in the paper with many others, and flowers arrived and two big wreaths, “DAD” and “BROTHER”. I got away with much as a lot of my extended family and friends didn’t realise I was his daughter, so there weren’t many, “I’m sorry”s or tearful hugs. That hurt me slightly because I wanted some hugs but I had Rob, my sisters and uncles and brother and that’s all I needed, all we needed.

The coffin was in the room and they did a good job, he looked like my dad. I couldn’t understand why he was there, none of us could.

The priests came and went and on Friday night, Paula, Brendan my uncle and I stayed with him on his final night. We talked about a lot of things, not really my dad, and didn’t sleep. Everytime the automatic air freshener went off, we jumped.

The funeral was on Saturday and at first I didn’t think I could do it. My sister held my hand as we listened to the priest before they took him away. I couldn’t stop crying. I said goodbye again, I said I’m sorry.

My fifteen year old little brother had to carry his dad’s coffin.

On the way up to the church we noticed one of the men carrying the coffin had something written on his bald head and neck in green marker. He didn’t know he had it.

After the funeral, we went to the PD, a Republican bar my dad and our family went to often, and had a buffet and a drink. Since then, I’ve felt very little. I’d been sleeping in his bed and going through photographs, taking some and not taking others in the knowledge he’d kill me. But he isn’t here now and I can’t really understand how. As time wears on, the truth of it, the real truth of it, is beginning to dawn.

I don’t know what to do now. There’s years ahead without my dad but I still feel as though he’ll be back. I never want to remember him as that man I saw in the coffin. I hate Catholic services. I’m worried about the future for my mum and the kids. I’m worried about my granny. I don’t know what to do without my dad. He’s the one who understood us and helped us. He paid my rent once and bought our Christmas presents. He taught us how to read and ride our bikes and taught us how to write and taught us our history. He got me into comedy and music. I have all his David Bowie vinyls now, as promised.

The last time I saw him was Christmas 2005 and he had stayed sober, it was lovely. There is a photo of him in the bedroom, arms outstretched and smiling and you’d think he didn’t have a trouble in his heart until you notice his wrist, a huge gaping wound. He was not a happy man and that kills us. We tried. We love him so much.

My sisters joked we should put lots of IOUs in his coffin with him because he helped us with money when he got ourselves into scrapes. I wanted to put his comb in there with him. Paula could barely look at him but when she did it was to fix his hair. He would be mad at us if he’d known we didn’t shave his head for him.

The Motherland

Hello.  I’ve returned from the Motherland.  How I wish it were the Fatherland.

Belfast was great.  It was lovely to have us (my siblings, anyway) all together for Orlaigh’s sixteenth, which I still refuse to believe has come to pass.  I spent not as much time as I would have liked to with my siblings since I also wanted to briefly catch up with my three remaining friends there.  On Friday, I nabbed free food at Paula’s work and spent the rest of the day watching rubbish TV with her (which always makes me happy) and playing with her black Tonkinese cat, imaginatively called “Cat”.  Given that my cats are called “Boy Cat” and “Girl Cat” (and Hobbes, who lives with Rob), you can see the poverty of original thought that exists in my family.

My little brother, Liam, was there before donning his rags (not so much “glad”, he’s a crusty punk with a pungent yet not unsettling aroma) and heading out.  I have never met someone who is so confident in his appearance as my little brother is.  He is, naturally, gorgeous, as are all my siblings.  He knows it, though, but it’s disarmingly charming rather than irritating.  He kept me up until five in the morning to show me photos of himself.  An actual quote from him was, “Stay out of that mirror, that mirror is all ME!” It was tongue in cheek, but only just. If I have Body Dysmorphic Disorder, my brother has some sort of inverse.

On Saturday I extracted myself from sleepiness in order to be a tourist in a warzone. I took my camera and my friend Stephen onto the Falls Road, my stomping ground when I was growing up, as I went to school there. The Falls Road is a working class, ostensibly left-wing Republican area, full of interesting political murals and daubings. My own politics- unsurprisingly, lie upon the far left, and I do correct those who refer to me as British, as I’m from Nationalist West Belfast and was raised with Republican ideology and the Irish language.

It felt quite strange taking photos of things that I used to see every day and think nothing of, but I always regret not doing so.  Here is an example; it’s one of the murals just past my school.

That mural depicts the Easter Rising (which is what Éirí Amach na Cásca translates to), and that building there is the GPO in Dublin, which was the site of the uprising against the British Army. It was unsuccessful, obviously, or else the “Troubles” would not have been.

For those interested in politics, murals, art, myself, Belfast and etc, I have uploaded a whole set of photographs that I took of murals, my old school grounds and my friend here at Flickr.  I am too tired at the moment but when I’m more awake I will write descriptions so you know what you’re looking at. For the extra nosey, I’ve uploaded two more sets- one of my sister’s birthday and one of photos of my old haunts in Belfast, featuring me holding some scones.  (I have been feeling especially hideous lately, but am putting these up for memory’s sake.  Please don’t poke the soft bits with sticks).

The Sane Guide to Living with Mental Illness: Medications

I was watching cigarette advertising from the 1950s onwards on Youtube today. It’s all very aspirational, grand cars billowing Camels smoke from the driver’s window, doctor extolling the virtues of Chesterfields and such like. So I made my own non-aspirational cigarette advert.

Anyway…

Here is another one of my more sensible guides to mental illness, this time, medication, from someone who’s been on most of them and suddenly packed in nearly all of them. (Although I am on 50mg Lamictal with Seroquel now to see if it dents my mixed episode). I guess a lot of you who are already on medications won’t find this helpful, but some other people might.

So!

The Psychiatrist has decided that you’re mental. Well done! By now you’ve probably been told what flavour of mental you have. The flavour favoured by most is bipolar disorder but you may have been told you have schizophrenia, depression, anxiety, a personality disorder, obsessive compulsive disorder or an eating disorder. Or even more than one of those things! That’s good, it means you’re extra special.

What will happen now is that they’ll hold a little conference behind your back to determine whether you’re going to be prescribed medication, going to be referred for therapy or whether you’re going to be kicked out of their office.

Chances are, you’ll be prescribed medication. It’s likely that they’ll be an antidepressant, antipsychotic, anti anxiety drug or mood stabiliser. Or pick and mix from all of the above.

So, here is the guide to medication.

1. You’re taking them because…?

Psychiatrists sometimes have a habit of thinking that their patients won’t understand clinical terms like “psychosis” or, “you’re flipping the fuck out”. So they might use helpful little phrases to explain to you why you’re being prescribed a certain medication, and they try to avoid frightening you by implying that your behaviour is a little…let’s say, off?

“This will calm you down”- “You are vibrating like a badly drawn cartoon”.

“This will help….even you out”- “You have burst into tears six times and then burst out laughing another ten for the thirty minutes you’ve been said here”.

“These should help lift your mood”- “You tried to kill yourself with my stapler”.

“These will help alleviate your compulsive behaviour”- “I’ve noticed that you’ve been counting the vowels I use in my sentences” (That was twenty three).

“These will help with your strange beliefs”- “You’ve referred to yourself as The Queen for the duration of this discussion”.

2. Know your enemy

Occasionally, a doctor will withhold a diagnosis from you or whoever bought you to the psychiatrist in the first place. Generally, you can guess what’s up with you via your medication. Antipsychotics, like Risperidone, Quetiapine, Amisulpride, Haloperidol and Olanzapine are generally used for psychotic disorders like schizophrenia, schizoaffective disorder, delusional disorder, manic depression, some types of personality disorders, some sleep, anxiety and compulsive disorders and occasionally, depression. Antidepressants like Prozac, Citalopram and Effexor are used for depression, some personality disorders, panic and anxiety. Anti anxiety drugs (the ones that are benzos, not antidepressants like Paxil) like Valium are for anxiety and panic and mood stabilisers, usually anticonvulsants, like Lithium (which is an antimanic), Depakote, Carbamazepine and Lamictal are used for some types of depression, personality disorders and manic depression.

If you have the interweb, and you do, since you’re reading this, research your medication. But be prepared to find out some things you didn’t want to know about…

3. Side Effects

Psychiatric medications are notoriously awful to take for some people and chances are you’ll have side effects. In short:

Get used to drooling. Antipsychotics and anti anxiety drugs can be really sedating and make your body go a little bit floppy, though it probably feels as though your limbs are made of lead. They can also cause you to slur your words, so, a little bit of spit might make a dash for freedom.

You will feel weird for a few weeks. Lots of medications take a while to work on the illness they’ve been prescribed for. In the wilderness of waiting, you might feel weird. You might feel blunted, spaced out, anxious, irritable or you might be having some odd thoughts. Tell your doctor.

You will sleep forever. If you’re taking antipsychotics, anyway.

Avoid the scales. It’s a shitter but psychiatric medication can make you gain weight. Antipsychotics are worst, anticonvulsants like Lithium and Depakote are pretty much wank too, antidepressants can be tricky and anti anxiety drugs, well, the benzo type, aren’t meant to be used for more than a week or two, so you shouldn’t gain weight from them.

Shake, shake, shake. The anticonvulsants will give you the shakes, listed on the PI sheet as “tremors”. It can be a bit embarrassing as people might assume, like they did me, that you’re an alcoholic. Try not to take sugar in your tea as it just causes confetti.

You might not think as clearly as you used to. Most drugs affect how your mind works. Even caffeine does, so psychiatric medications will. Well, they’re designed to. For the first while taking them, your head might be a bit foggy and…

I had a point here, but I don’t remember what it was… because I’m taking antipsychotics.

4. Don’t expect miracles.

Some drugs work on some aspects of illness very quickly. Antipsychotics are good for getting people out of psychotic and manic episodes pretty fast. Antidepressants can lift your mood within a fortnight.

You have to take drugs in order for them to work. If you’re not taking the medication as prescribed, the medication isn’t “not working”. You’re just not taking them.

There is more to mental illness than direct symptoms and medication isn’t a cure for them. The chances of you being suddenly completely better are slim, and because of this, medications will be changed, doses will be adjusted and other treatments will be drafted in alongside them.

You don’t actually have to take medication if you don’t want to. There will be times when you will have to- i.e if you’re under section, but aside from that, you can choose. Of course, if you’re under the care of a psychiatrist or mental health team, you will be strongly advised to take what they’ve prescribed you.

But, you can weigh up the pros and cons of medications. If the side effects are too much, say so, because another medication can be tried. If you hate the way they make you feel, say so, same applies. The decision is ultimately yours, though.

In reality, it’s best if the decision is ultimately yours and someone elses’ because getting ill again- relapsing into mania or psychosis, for example- means that you won’t be in the place to decide if you should be taking them because you might feel that nothing is wrong. It’s always good to have someone else tell you that you’re mental when you don’t believe it yourself.

5. The medication Hissy Fit.

Yeah, chances are you hate your medication, even if it is helping. You’ll want to flush them down the toilet, chuck them into the Thames, strap them to a rocket, etc etc etc. Have your hissy publically with the doctor before you decide to do the above, as they will be only too happy to tell you what a pain in the arse you were when you weren’t taking medication.

6. If you’re going to continue medication, DON’T:

Drink. Alcohol and psychiatric medications are a ridiculous mix. They make you a lightweight and you’ll be drunk a lot quicker, but be less inhibited so you’ll drink more. That way lies making a total dick of yourself in front of your friends, passing out in the street and pissing yourself or ending up in hospital.

It can be dangerous to drink alcohol while on certain medications like Lithium and Depakote.

And alcohol is a CNS depressant and it will generally make any mood unstable. There’s no point in taking an antidepressant to make you feel better, only to get wasted and feel like shit.

Take drugs. Because you’re already pumping powerful chemicals into your body and you don’t need more.

Drive. Don’t even attempt to drive if you’ve just taken an antipsychotic as it will result in a DUI and probably the end of your car. Don’t cycle either, because, like me, you might find that you’ve forgotten how to steer and career into the pavement of the Seven Sisters Road.

and DO:

Get a pill organiser. One of those cheap plasticky things you can get from chemists for the princely sum of £4.99. They sort your pills out by day so you can’t forget or take too many.

Keep tabs on them. By recording how you feel every day. Or ask someone else to do it for you if you don’t trust your own insight.

Drink lots of water. Because they can piss about in your blood stream, liver and kidneys.

7. And if you’re not going to continue taking medication:

Do it slowly. Don’t come off medications suddenly. They are drugs, and like any drug, they might have withdrawal. Do it slowly.

Look into other treatments. Like therapy, for example. For some people therapy works as well as or better than medication.

Tell someone. If you’re in the right frame of mind to. Quitting medication can cause a relapse that you might not notice but other people will. Subtle things, like stripping to your knickers and running into traffic.

Anyway, that’s my Sane Guide to Medication. Anything you want to add?

Labels and language

Bipolar disorder is “just a label”.

Not to me.

I know mental illness is culturally and personally complicated. A faction, a rather large vocal faction, don’t believe in the existence of mental illness. There’s another debate about this over at Mental Nurse. I stayed out of it.

It’s fair enough to hold your own opinion but to me, it’s insulting when people refer to bipolar disorder as a label. The same is true of schizophrenia, some people refer to it as a label, but, more often than not, there’s a little get out clause stating that “oh, but schizophrenia, that’s an illness” because it is more obviously destructive and indiscriminating than bipolar disorder. “Learned” types don’t make this distinction but the laymen do.

One of the problems is that bipolar disorder is seen as a middle-class illness. Its famous sufferers are by and large educated, artistic people. Schizophrenia, on the other hand, is an illness that is known for affecting people from working class backgrounds. Its very image is of the mad bag lady, or the unwashed black man gibbering on the bus. This is a stereotype, not from me but from society as a whole. Schizophrenia is the poor man’s disorder, and manic depression is the rich man’s disorder. Because manic depression tends to be publicised as an artistic disease, it’s easy to see it as a label that auguments this image, rather than an illness like schizophrenia.

I can see why some people prefer to see mental illness as a label.

Mental illness, particularly schizophrenia and personality disorders, come with stigma attached to it. The public’s perception of schizophrenia isn’t a sympathetic one. It’s wrongly associated with violence, and people fear those affected by schizophrenia.

Because of the stigma attached to mental illness, it’s better to see it as just a psychiatric label with no real meaning to the individual. Being “a schizophrenic” or being “a manic depressive” says something about you, something that might be seen as negative. Labels you can get rid of. Labels are interchangeable and unreal. The causes of mental illness are unknown, so maybe it isn’t worthy of being called illness at all, and sometimes diagnosis can vary from person to person. There’s no way of proving that somebody has a mental illness. A label that says, “Something is wrong with you” is insulting and unnecessary. Lots of people believe that psychiatric labels are just imposed on someone because society doesn’t know how to cope with them. In my own experiences, some people have considered me to be arrogant because I explained that I had manic depression. Implying that I have a real problem, and am not just a contrary, melodramatic woman.

I see this as real. As real as any other illness.

I think seeing mental illness as being as real as physical illnesses is the way forward in reducing stigma. A lot of people don’t agree with me, though. If mental illness is real, then your diagnosis does mean something. And you can be defined by it. And people are defined by mental illness, far moreso than they are by physical illnesses, because a mental illness lives in your control tower, pulling the switches that make you who you are. But if mental illness is real, then it’s not the fault of the person who has it. They didn’t do anything to make this happen to them.

But if people just dismiss mental illness as a label, it devalues those problems. It implies that any suffering the person is experiencing is not real. It’s all part of a disposable label. If someone kills themselves over a label, well, that’s just stupid. Mental illness can be treated. (Although the actual wanting to be treated for it is another problem altogether). And, although there’s no real scientific evidence of yet that shows that mental illness is hardwired into the brain, there are a lot of physical illness that cause symptoms of mental illness. Dementia, epilepsy, MS. So there is something in the mind that causes hallucinations and mania. People suffering from hallucinations that have been triggered by a physical cause aren’t fashioning coping methods, so why are people with mental illness supposedly doing just that?

I don’t think that I’d be “free” if I thought of manic depression as a label rather than an illness. I don’t think I’d be liberated from all that manic depression implies. This feels like an illness to me. It feels like an infection. It swept through my body eleven years ago, it weighed down my bones and dissolved its sickness through my body and mind. This feels absolutely physical to me. I don’t just become depressed sometimes and manic at others. It’s not an isolated syndrome. It affects everything and it is not a case of “letting it”, no more than a person with cancer can “let” their cancer destroy their body. My energy is affected by it. My perceptions and my abilities are affected by it. Days I can’t sleep, and days I can’t wake, and days I can barely walk more than a few yards, and days when my hands shake so badly that I can’t hold a cigarette, and ash is confetti. It isn’t “all in my head” because it’s not confined to my mind. It’s in my body, too.

There is a theory that people develop mental illness to cope with unbearable stresses in life. There is one illness in which I support this theory: Dissociative Identity Disorder, because, overwhelmingly in those who suffer from it, there has been a massively traumatic event that has happened to them, and I can see and understand why someone would want “alters” in order to escape, in order to cope.

I don’t believe that other mental illnesses are caused by stresses in life. Certainly worsened by them, as any human emotion is affected by the life around them. In my case, I’ve had those traumatic events. A lot of my life was a nightmare. But, in a way, I deal with that well, just like I’m good at dealing with emergencies, I get on with it, and I always have. Nothing “triggered” my first episode, the same way that nothing has triggered all my episodes since. And I did not just “become” manic depressive when I was twelve. I can see its roots stretched back as far as my childhood, which makes me believe even more so that this is just an illness that I was born with.

If mental illness is real, then the people who suffer from it are not just burdens on society who got there on their own volition by being fucked up and reckless. It just happened to them, like cancer happens to other people. Because a lot of people with mental illness drink and do drugs to cope with it, well, the image of mental illness is unfavourable because we’re all alcoholics and druggies, on the bottom rung of society. They didn’t do anything for this to happen to them. It’s not their fault.

If mental illness is real, it can be treated. Maybe one day cured. If I saw this as a label, a label that was destroying my life, not because I let it (believe me, I try, very hard, every single day, to not let it do anything), I’d have no hope. I probably wouldn’t have accepted the diagnosis in the first, probably wouldn’t be treated for it, probably wouldn’t have a CPN, probably would never have spoken to Rob about it, probably never would have started this blog, probably would have killed myself the second I left hospital.

I don’t believe in the “Big Pharma”. All huge businesses are corrupt, and a lot of people shouldn’t be on psychiatric medications. But some people should, and for some people, it does help. Of course, because it’s a label, psychosis, mania, depression, it’s all good, it’s all someone “experiencing” stuff. But those experiences can be so destructive. And sometimes, people need a drug to pull them out of the depths and heights of these experiences. It’s not coercion (although I do agree with detractors that in the past, “inconvenient” people were put into hospitals), there is a need for antipsychotics and hospitals to help stop someone ruining their lives, or taking their lives. Of course people should be allowed to, but it’s unlikely that once you help someone ease back into a more rational frame of mind that they’d want to.

Another thing is that being “ill” grants you a “victim” status that those who espouse the label theory don’t like. I’ve written before about the survivor/victim mentality so I’ll just let you read that instead.

And there is, of course, the language of mental illness. Words that you are not supposed to use, lest you be a “victim”:

• Mental illness, as opposed to mental disorder/mental distress/fantastic thing that makes me so unique
• “Suffering”. You’re not allowed to “suffer” from mental illness because if you do, you’re a victim
• “Medication can be helpful”, no, medication is EVIL.

I understand the reason people refer to mental illness as a label. But it is insulting to me. And it’s insulting to me when people comment here and tell me to take a bit more exercise and eat my greens and do a bit of yoga and I’ll be fine, as if I did this to myself by sitting around, did this to myself by not eating enough leafy vegetables. Over eleven years, I have done all the good stuff, done the exercise, got my vitamins, had a “positive attitude” and it didn’t help. I did not do this to myself. If I did this to myself, I would undo it to myself. Oh, yeah, and if you want to be in my bad books forever, do come here and tell me three things:

1) Pull yourself together, I did, it’s just a label, think positively, your diagnosis doesn’t mean anything, etc etc

2) DIET and EXERCISE? Oh, and YOGA and REIKI and other bollocks? It worked FOR ME. You don’t need ANY OTHER TREATMENT AT ALL. In fact if the above doesn’t work for you, YOU’RE WEAK, AND BEING CONTROLLED BY THE BIG PHARMA!

3) Your illness is an EXCUSE for you not to live a NORMAL LIFE because obviously due to your EXCUSE you must not ever tell anyone that you LOVE them or PLAY WITH YOUR KITTENS or ANYTHING since you spend ALL DAY just being MANIC DEPRESSIVE.

4) How dare you use the words SUFFERING and MENTAL ILLNESS. It is “MENTAL DISTRESS” and saying that people SUFFER from it makes it sound BAD.

For those people, I can use other words, like “fuck” and “off”.

The only thing that my illness is an “excuse” for is for my slurring my words occasionally on medication. I’m not defined by my illness, even if I don’t consider it a label. It’s part of me. Part. It does hold the reigns on my life, but hey, whatcanyoudoaboutit. Not much more than I am doing, really. I think therapeutic exercises like yoga and whatsit are important as supplements to actual medical treatment (indeed, I am getting a prescription to exercise to help my energy), but not the be-all, end-all. I don’t like to be made to feel like a failure just because I’m in psychiatric treatment, and just because, so far, I’m not better yet.

It doesn’t mean that I define myself as “manic depressive”. I don’t. I think of myself as someone with manic depression.

I still don’t feel very well so that may account for the tone of this post, and the fact that it doesn’t make that much sense. Although at least I managed to get out of bed before 4pm today.

The Sane Guide to Living with Mental Illness

Wow, this blog has gone right off topic recently. Flippin‘ friends dying, they’re so inconvenient.

I am still nowhere near caught up on e-mails so please excuse me if you haven’t received a reply from me.

I am fairly sane at the moment.

This is somewhat of a revelation; I can’t remember a time in my life when I have been fairly sane. Oh, glimmers of sanity have squeaked through the black tarpaulin of madness but by and large, even my most coherent writings have come from a chaotic planet.

I am not incredibly depressed, nor am I manic. I’m not fantasizing about suicide- it’s been a few months since I’ve white-knuckled safety railings at the riverside.

Anxiety and paranoia, yes, excessive worrying- well, that’s just me- and my ongoing battle with weight and eating continues. A lot of sadness and sorrow and anger at recent events. But mood-wise? Steady, in a mildly depressed kind of way.

How do I judge my own sanity? By not comparing myself to other people. I’m never going to be Completely Sane. The lovely thing about the world is that you’d have to look a long way to find someone who is.

I’m never going to not have manic depression. Even now, with a somewhat clear head, there are “residual symptoms”.

Anxiety and paranoia. An ongoing battle with weight and eating habits (and not-eating habits). Still having trouble sleeping. The reckless nervous energy that is 50% me and 50% manic depression. A mild, niggling, irritating depression that blunts my experiences and emotions. Intrusive thoughts and panic. Narcissistically worrying about being narcissistic.

But this is good.

It was only a few months ago that I was ravingly psychotic, swallowing a huge dose of Lithium and on the verge of utter annihilation. Every little victory- the return from self-destruction- I cherish. To judge my sanity, I compare myself, to myself.

Every time I cast mind back to six months, a year, a year and six months, I’ve been ill. For most of my life, I’ve been ill. I’ve clung on to the merry-go-round of madness and am barely alive because of it.

So, while I’m feeling relatively together, here’s my sane guide to living with mental illness. Bear in mind it’s from the perspective of “been there” rather than “been told”. Feel free to ignore everything, though!

1. In times when you feel better, don’t expect the unexpected.

If you’re like me, this is much easier said than done. I’m a born worrier. I worry about everything. When I click “Publish”, I’ll worry about that, too. Talking about myself all the time? How self-obsessed. And in my self obsessed way? I’ll worry about that. I worry about everything I say, everything I don’t say, and everything I don’t do, and everything I do.

So I find it hard not to worry about the next episode of illness.

I know it’s probably coming, so I find it difficult to enjoy not being mad for a change. Experience has taught me that these lulls in time are the calm before the storm. I’m a rapid-cycler, and pockets of sanity are brief for me.

But, this time, I’m trying to think, “Maybe this will last longer than a few weeks”. You never know. So don’t try to will your next psychotic breakdown or manic episode. Relax, if you can. Take your medication, try to be okay.

2. Keep taking your medication, even if you feel better.

Ah, this old chestnut.

I’ve only been treated for manic depression for the past year and a bit. But every time I’ve felt “alright” and decided to ditch my medication and miss appointments, I’ve become ill again, very, very quickly. It has nearly always resulted in a messy hypomanic or manic episode and has meant that my antipsychotic gets upped to deal with the “crisis”. Or, there are times I’ve quietly skipped my medications and lied about it and become suicidal.

Something I believe, and have emphasized a lot here, is that mental illness is partly biological.

Sure, nature can embellish it, but I strongly agree with the idea that there is a biological basis for most mental illnesses- almost certainly some forms of depression, manic depression, anxiety, schizoaffective disorder, addiction, schizophrenia (their symptomatic similarities to biological illnesses such as epilepsy only strengthens my conviction) and possibly personality disorders, eating disorders and DID.

I don’t subscribe to the belief that mental illnesses are “labels”. Cancer, diabetes, asthma, etc, aren’t labels, they’re illnesses. And so it mental illness. Once I got past that, I found it easier to write with conviction, without worrying about “labelling” myself. I have got manic depression. Whoop.

I’m not on the gravy train of the “medication is evil”. It doesn’t mean I like to take them, though. I hate taking my medications, I always will. I hate the ritual, I hate the weight gain, I hate the exhaustion. I can see the argument- especially in countries where you pay for healthcare, such as the USA, and where medications are advertised like sweets. But if you take something and it makes you feel better, well, I think that’s okay.

And I don’t think people appreciate how difficult it is to continue taking medication for mental illness. On one hand, the side effects can be close to unbearable. I do entirely understand the stance that medication can numb you. But if I hadn’t been treated for manic depression- and medications are a huge part of that- I would most likely be dead.

So on the other hand, we come full circle to…

It’s not a cure. It’s to help you cope and live with your illness, to alleviate some of the more frightening and terrible symptoms that you are living with.

So when you feel better, don’t stop taking medication and don’t miss appointments, however tempting it might be. You might be feeling better due to sheer force of will, help from people, or maybe your illness just shifted somewhat, but, if you’ve been taking medications for a while, there is almost certainly something in them that is helping, too.

3. If it’s not working, say so.

Lithium made me physically sick and didn’t help at all with my illness. But because it was the “gold standard” for bipolar 1 disorder, I didn’t speak up, and quietly waited to feel better.

I never did and after the third or so bout of vomiting, shaking and passing out, I told the psychiatrist that I didn’t want to take it anymore.

Likewise, Seroquel helps me sleep, quells psychosis for the most part but it’s “antidepressant properties” are non-existent in my case and it turns me into a zombie. So I am being slowly switched to risperidone instead.

Of course, there may be times you can’t tell your medication or treatment in general isn’t working. So this one’s for those around you who know you- if you can, let someone know. I was manic for a while on Lithium and it was Rob who noticed I was, not me. Insight is an occasional companion sometimes.

4. Get support.

It can be isolating to live with mental illness. And not everything is as culture tells us it should be; lots of people don’t have close friends or family to rely on. And that isolates us further. Sometimes, family and friends don’t understand. Sometimes, you just don’t want to talk to them anyway.

There are support groups around the country that you can speak to and make friends at. The Manic Depressive Fellowship (now the much more PC Bipolar Organisation) holds regular local support groups, and The Support Line has some links and phone numbers for people with depression. Rethink also offer support groups for illnesses such as manic depression, depression, anxiety, schizophrenia and personality disorders, amongst others.Other “service user” groups include The Perceptions Forum, run by mad people for mad people, centering around the psychosis experienced by people with psychotic illnesses.

There are also tons of online forums that exist to support people with mental illness. A great one is The Mood Garden, which has forums for depression, self harm, anxiety and panic and substance abuse.

There are other good forums and support groups for problems such as anxiety and eating disorders.

5. It’s good to talk. Therapy is important too, but if you’re not going private, bring a book.

I was diagnosed with manic depression over a year ago and I’m still not in therapy. Medications can be good, but I think therapy is just as important. Having someone to talk to, learning ways to cope with an illness that you might have forever and taking the strain from ear-bashed loved ones is valuable.

I am finally speaking to a therapist soon- about friggin’ time an’ all. As biological as mental illness might be, sometimes, treatment is complicated. For example, I can’t take antidepressants. It’s been done a few times, and each time has been the same- hello mania. Treatment, then, is needed to help me cope with depression. I also have, as you know, Body Dysmorphic Disorder and problems with eating disorders, that pills don’t really help.

And even if you have a tidy mentally interesting diagnosis, life still happens, and it’s hard. Quite aside from regularly lapsing into depression because of my illness, there are life-things I struggle to cope with.

And again, it’s a little-thought line that dealing with the diagnosis itself it very difficult indeed. I still have trouble accepting my illness, however lucid and sage I seem here. Like any life-long illness, coming to terms can be hard.

The fall-out from episodes of illness can often be extremely hard to cope with. The strain it can put on your relationships, jobs, physical well-being, finances and other areas can sometimes be the beginning of a downward spiral. (After bad episodes of illness, I hate myself and feel so guilty and worthless I want to top myself. But there are always people I can’t look in the eye, and I find it very difficult to speak to friends and to manage the practical aspects). Psychotic episodes, in my experience, can be the worst as it’s a side of you people may have never seen before, and may find very hard to understand. It is really good to talk these things through.

So, if you’re being treated, push for therapy. You might have to wait a while, though. If you have specific issues (or your loved ones do), such as bereavement, substance abuse and “youth” related problems, there are many free counselling services around that you won’t have to wait so long for, such as Cruse and the Mind Guide to Counselling.

Also, never forget that if you feel you have no-one to turn to, there are confidential counsellors available by phone and e-mail such as the Samaritans. It’s their job to listen, and they can really help in a crisis.MIND also offer free counselling.

6. Mentalist- know thy services.

It’s not inevitable that you’ll need to go into hospital in an acute episode of illness. Whereas sometimes it may be the only option (such as needing to be sectioned for your own safety, and the safety of others), hospitals can be extremely traumatic. They are boring, above all else, and the surroundings can leave a lot to be desired.

If you, your “team” and those around you think you may need somewhere safe to be for a while, there may be other options. For example, there are crisis centres. I am lucky to have (and to be visiting next week with the CPN) a women’s only crisis centre.But look up mental health services in your council directory and ask questions. There may be a crisis centre near you.

You can also enlist the help of a crisis team if you want to avoid admission to hospital. Most councils have a community mental health crisis team who can give you ongoing support and evaluation at home.

7. If you can’t work, get benefits advice and help claiming them. And get someone to keep an eye on your finances.

I have been too disorganised and unwell to even begin to sort out my benefits. My CPN played a huge part in helping me, as did Islington People’s Rights. Now I’m finally on Income Support, Housing Benefit and DLA.

If you’re able, find out what to claim and how, and try to get independant help and advice from local people’s rights services or from the Citizen’s Advice Bureau. If you have family or friends, enlist their help in getting forms for you and helping you fill them out. There are also online services and resources such as the Advice Guide and Rethink.

When you have a mental illness such as manic depression, borderline personality disorder or schizophrenia, you might be, like I have been, impulsive and reckless with cash. When I’ve been working I’ve gone on many a manic spending spree and completely cocked up my finances. The “oh no” bank statement is not your friend, so, embarrassing as it might be, it can be a good idea to ask a friend or someone close to keep an eye on your spending for you.

8. If you’re reading this, you’re alive. Nice one.

Mental illness can equal terminal illness. It’s true that many people with mental illness will go on to commit suicide. Even with the best of care and support, it is not altogether unavoidable.

But being alive, day after day, is a victory. It’s not a failure, it’s not “being weak”. Whatever help you receive, it’s ultimately you who is responsible for yourself. So if you’re managing to continue living, no matter how horrible things get, even if in the past you’ve tried to commit suicide, you are alive and you should try to have some pride in your self.

Again, this is an “easier said than done” rule but I think it’s worth pointing out.That’s all from me for tonight- jesus, it’s a Saturday night. I’m going whip out the media player and turn on the lights so I can pretend I’m at a club or something.

I’ll be writing more trying-to-be-helpful things about living with mental illness in the future. Please feel free to suggest stuff.

Mental Illness and Mortality

Last night when my brain was car-crashing, I was reading about 10 articles per five minutes. One them was this about serious mental illness and mortality.

That was the article that triggered my panic attack. Here’s another:

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Clinical & Research News

Death Data Have Researchers Searching for Answers Eve Bender

People with serious mental illness are dying at higher rates and at earlier ages than people in the general population who don’t have mental illness.

Metabolic dysfunction caused by some medications may play a role. People with serious mental illness in one sample of psychiatric inpatients had more than three times the rate of death of those in the general population without mental illness and died an average of 32 years earlier.

The leading causes of death among people in the sample, most of whom were diagnosed with a psychotic disorder, were heart disease, suicide, accidents, and cancer.

The findings call for increased screening and monitoring of patients with serious mental illness for medical comorbidities, according to the authors of the study, published in the October Psychiatric Services.

Researchers collected medical information on 20,018 patients hospitalized on at least one occasion at one of nine hospital sites associated with five behavioral health care organizations in Ohio’s public mental health system between 1998 and 2002.

They matched patients’ hospital records with death records from the Ohio Department of Health and identified 608 patients who died during the four-year period (hospital deaths were included in the sample).

The patients who died had been diagnosed with a number of mental disorders, including schizophrenia (134), schizoaffective disorder (128), alcohol abuse (101), bipolar disorder (87), alcohol dependence (85), major depressive disorder (80), cannibis abuse (59), other mixed or unspecified drug abuse (56), and cocaine abuse (35). The majority of patients in the sample died from heart disease (126), suicides (108), accidents (83), or cancer (44).

Researchers also measured years per life lost for those who died, which is a measure of premature death based on the current mean survival age for a cohort matched by age and gender in the general population. Patients with serious mental illness died an average of 32 years earlier than patients in the general population, according to the findings.

The average age of death for the people in the sample was 47.7 years. When researchers calculated the standard mortality ratio for patients in the sample who died, they found 3.2 times the rate of death as that of the general U.S. population.

The most prevalent comorbid medical conditions for patients in the sample who died included obesity (144), hypertension (136), diabetes (70), chronic obstructive pulmonary disease (62), and injuries (39). Among the 126 patients who died of heart disease, leading comorbidities included hypertension, obesity, diabetes, chronic obstructive pulmonary disease, and disorders of lipid metabolism.

Previous research has yielded similar results. For example, a report released by the federal Centers for Disease Control and Prevention in April said that patients with schizophrenia or bipolar disorder lose as much as 20 years off their average life expectancy compared withsimilar individuals in the general population without seriousmental illness and had elevated rates of heart disease (Psychiatric News, July 7).

At a 2004 meeting convened by the American Diabetes Association and attended by several APA members, the organization issued a consensus statement confirming the risk of metabolic changes associated with second-generation anti-psychotics and calling for careful monitoring of patients on these medications.

In the study of hospitalized patients with serious mental illness in Ohio, researchers could not draw conclusions about cause of death. They speculated, however, that underlying factors may have included medication-induced weight gain, poor personal hygiene, reduced physical activity, increased prevalence of smoking and substance use, and inadequate social support, according to C. Bayard Paschall III, Ph.D., chief of the Ohio Department of Mental Health’s Office of Performance Improvement.

“The question is how we tease some of these characteristics away” from others to be able to associate them with cause of death for patients with serious mental illness, Paschall told Psychiatric News.

Study findings indicate a need for closer collaboration between psychiatry and primary care, according to lead author Brian Miller, M.D., M.P.H., a PGY-2 psychiatry resident at the Medical College of Georgia. In ideal circumstances, patients with serious mental illness could walk from their psychiatrist’s office to an office across the hall to see a primary care physician “who might screen them for some of the comorbid medical conditions we observed in our study,” he said.

In addition, he suggested that psychiatrists and other physicians treating patients who take second-generation antipsychotics carefully monitor these patients for side effects associated with metabolic dysfunction and also write orders for tests of fasting blood glucose, lipid profiles, and liver and thyroid function. Miller and Paschall are conducting further research on some of the factors that may be contributing to excess death rates among people with serious mental illness.

 

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I’m not sure what to draw from that as they don’t mention if the alcohol/drug abuse is co-morbid with mental illnesses. Still, it is sobering and frightening. Especially given just how low on the agenda mental illness is in Britain.

My dad died right on the money- aged 47.11 years.