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… 

I miss my dad.

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

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

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

I think the look was a little like this one.

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

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

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

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

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

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

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

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

The Recovery Myth

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

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

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

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

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

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

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

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

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

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

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

Five Years- Still Alive

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Trauma

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

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

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

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

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

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

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

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

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

Quitting smoking- anyone want to join me?

Fnar. I specialise in making mildly amusing images.

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

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

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

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

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

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

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

Remember Forever

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Let me be.

Mentalism and Motherhood

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

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

and drizzle pink flowers every time the breeze blew…

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

Not pictured: me swearing.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Referrals are essential for women with:

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

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

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

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

Oh, that.

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

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

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

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

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

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

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

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

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

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

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

I hope so.

P.S: I’m not pregnant, don’t worry.

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

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

Mind Media Awards/You Take It With You

Hello!

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

So thank you!

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

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

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

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

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

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

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

31 and 28 and stupid faces.

 

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

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

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

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

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

When Fear Becomes Phobia

The doctors call it panic disorder.  I’m trying to medicate away an existential crisis.

It’s not working.

I work all day, and get half drunk at night.

Waking to soundless dark, I stare.

In time, the curtain edges will grow light,

Until I see what’s always there.

There’s been a programme on Channel 4 recently called, “Les Revenents”.  In English, “The Returned”.  The Returned are those returned from death to life.  My husband was an avid fan.  I couldn’t watch it.  It wasn’t just because they were dead.  It was because they were dead and returned to life, their death a mistake, a mishap, reversible. Something that will never happen. Not to me, and not to you. And that’s why I couldn’t watch it.

There’s a difference between knowledge and belief.  Up until recently, I’ve always known I was going to die.  The fear would grip me and squeeze my heart from my chest to my mouth. A scream caught in the throat, my body, convulsing with the pressure and the pain, flung across the room. When I was two, I had an asthma attack that almost killed me.  And on first waking, I threw my doll into the face of the doctor.  And twenty five years later, I’m still that doll.

Unresting death, a whole day nearer now,

Making all thought impossible but how

And where and when I shall myself die.

Arid interrogation: yet the dread

Of dying, and being dead,

Flashes afresh to hold and horrify.

But my heart would return to my chest.  It was needed.  Life was happening. It had to be lived.  The small victories and failures of every day would bring me back to clockwork human, walking, talking and being alive in the world. Arguments to be had, worries to worry over. Futures to think of, anniversaries to drink of, dishes to be done and cats to be fed.   A car almost hitting me would quicken the pace. I’d pull back from the road and swear and shake my fist and then carry on my way.  I smoked cigarettes and watched TV and visited cemeteries and went to funerals and took flights and slept.

A week ago, I was crossing the road to work and a hearse passed by. My legs turned to jelly, I felt myself dissociating, leaving my own body. (Maybe this is why there’s a belief in the spirit, the out of body experience.  Sheer, cold fear forcing the ghost from the host).  It’s not the first time that’s happened lately.  Do you know what else elicited such a response? Father Ted.  I turned it on at 3am to help me sleep after another night of panic attacks had rendered me a shivering wreck and had to switch it off again because Dermot Morgan is dead and I will be too.

So now I can’t watch Father Ted. Or Monty Python. Or Not the Nine O’Clock News (because Mel Smith just died).  And I was late to work because I had to sit down before I collapsed, the kaleidoscope world sucking in and out of my vision.  People were just drinking their coffees, hurrying by, and I wanted to scream, “DON’T YOU REALISE WHAT’S GOING TO HAPPEN?” But I lit a cigarette instead (bland irony; they’ll kill me) and gathered myself together to stand on my fawn legs and walk.

The mind blanks at the glare. Not in remorse

—The good not done, the love not given, time

Torn off unused—nor wretchedly because

An only life can take so long to climb

Clear of its wrong beginnings, and may never;

But at the total emptiness for ever,

The sure extinction that we travel to

And shall be lost in always. Not to be here,

Not to be anywhere,

And soon; nothing more terrible, nothing more true.

I’m scared to call my granny, because I know she is going to die soon. I’m scared to talk to her then remember the voice in the afterwards, and I’m scared because I know I’m going to be too scared for her funeral. I’m scared to get a plane, sometimes, too scared to get the train. Too scared to talk, and scared of my bed. Scared to leave the house sometimes, as walking home with a pint of milk is so gloriously ordinary and unpermanant that I can’t bear it and fire flushes through me once more, and I find myself running, running. Without embarrassment as my screaming bursts through the door. My world is getting smaller and smaller and yet, I can’t do anything about it.

I’ve always known, but never believed.  It seemed so far off and distant, surreal and unformed. It doesn’t feel that way anymore. Now I know it and I believe it. It’s going to happen.  When I am lying in bed desperately trying to sleep and I feel my veins jumping beneath my skin, my heart-mouth almost chokes me with the terror that I’m going to stroke out- it’s happening, now, now, now, it’s happening. And I also know that it’s my own terror causing this, that my heart is beating so rapidly my veins can’t keep up, and the weight on my chest is another panic attack coming to smother another hour out of my finite hours. I know this, and yet it doesn’t help. It’s the same way I know that my fear of dying won’t stop it happening (it will hasten it), but I can’t help it.  Once you know, really know, you can’t unknow.  Once you believe, you can’t unbelieve. What should be freeing traps you. Every single twinge feels like a mortal threat. And the medication I’m taking to cope with this reality is making me feel sick and tired.

This is a special way of being afraid

No trick dispels. Religion used to try,

That vast moth-eaten musical brocade

Created to pretend we never die,

And specious stuff that says No rational being

Can fear a thing it will not feel, not seeing

That this is what we fear—no sight, no sound,

No touch or taste or smell, nothing to think with,

Nothing to love or link with,

The anaesthetic from which none come round.

I’ve prayed. I’ve vainfully resurrected my old Catholic self.  Not believing in god, but in prayer. How calm it used to make me. To feel as though I was doing something. To slow the frantic pulse of my veins. But it doesn’t do anything- it doesn’t change. Nothing does or will. 

I’ve had a big year; done those, “once in a lifetime” things, like getting married, having a hen night, those milestones in life that are supposed to mean so much. I’ve had a difficult couple of months.  Some people close to me wonder if I have PTSD. Maybe. It has certainly gotten worse since those events.  The realisation that I can’t go back. That things are what they are.  What has happened to me has happened forever. All of it.  Pain I have caused others have been done forever, and I can’t undo it. Crying doesn’t resurrect a father. He’s just bones now. When you have a child, you are condemning someone to death. You have a date of birth and on the stone will be the date you died.  That will be an event to other people, but not to you. I can’t read about space, or science, because I won’t be there to see any of it pass. How can it be that I can’t change it? Any of it? When egotism and insignificance clash.

And so it stays just on the edge of vision,

A small unfocused blur, a standing chill

That slows each impulse down to indecision.

Most things may never happen: this one will,

And realisation of it rages out

In furnace-fear when we are caught without

People or drink. Courage is no good:

It means not scaring others. Being brave

Lets no one off the grave.

Death is no different whined at than withstood.

My husband holds me and says, “Don’t think about it”. He tells me he loves me and I want that to matter, but it doesn’t. What is love? What is meaning? What is anything? Shouldn’t I just fuck off and read existentialist philosophy? Except I can’t. Now Camus is on a par with Father Ted. Finally! And when he sleeps, I panic. I can’t take that still face. He is alive! Alive and should be alive forever. I can’t bear it. And I take my antipsychotics and wait for the world to swim away.

Slowly light strengthens, and the room takes shape.

It stands plain as a wardrobe, what we know,

Have always known, know that we can’t escape,

Yet can’t accept. One side will have to go.

Meanwhile telephones crouch, getting ready to ring

In locked-up offices, and all the uncaring

Intricate rented world begins to rouse.

The sky is white as clay, with no sun.

Work has to be done.

Postmen like doctors go from house to house.

But the only good thing to come out of all of this is realising that all you have, in the end, and if you’re really lucky, are your memories.  I love my husband, and it matters because this is his life, too.  He’s going to remember the love.  I am more careful in how I speak to and treat people now.  I don’t want to contribute to bad memories. I don’t want to be a negative force. I want to spread kindness and love because it’s all we have to give, and the only worthwhile things to give. When I am feeling unkind, I think about the body. The body is the life, and the scars are the bad memories. I don’t want to be a scar. I don’t want to add to the multitude of scars we live with and which will be there forever. Before I start to shout, or to say something in anger that might be scarring, I think instead, “Do I want to add to this?” And I never do. It doesn’t mean suppressing anger. It just means realising that it doesn’t matter, in the scheme of things.  Nothing does, of course.  But other peoples’ happiness matters, to me. I want people to be happy, and to be loved, and to remember that they are. And I am a particularly friendless type of person. Isolative, and often happier that way. I do want to change that. I don’t want to look back and have only vignettes of myself, alone, as always.  I don’t have a, “best friend”, you won’t find many photos of me doing stuff with other people at things I was invited to, and I don’t have close friends. I feel like it’s another fundamental of human experience I am missing out on. The speeding car flattens me to the wall.

And so, here I am, with another inevitability. That I must go to bed, and go to sleep, and wake up tomorrow, then go to work (which I enjoy and find value in because it involves helping other people, possibly the one thing I find meaning in) then have a weekend.  Medication to take, dishes to do.  I’m going to Paris for my birthday and trying not to remember my last birthday, one big scar.  Not to pick it. Not to open it. To not make a new scar. To not panic at the ticking up of the years. To hold a hand. Return a kiss. To walk in a street and try to be present. To be there. It’s all we have. It’s all any of us have.

Hi-ho, hi-ho, back to CMHT I go

*whistles*

It’s been a long time since I’ve updated, due to being incredibly busy! I have a HUGE post about Irishness to accost you with but it’s hugeness is somewhat intimidating and I have yet to finish it.  I had a fantastic time giving the talk at London Met about being an Irish writer.  An incredibly friendly, engaged crowd and it’s made me think deeply about the nuances of identity. I need to write more as I think I’m going to be flayed and stripped of the title soon.

But I’ve been adjusting to life, in a new job (which I love) with a disobedient brain (which I don’t).

I saw the consultant on Friday, after four months of waiting. It was an abrupt, rushed appointment but I went in there with one thing in mind- even though it feels utterly pointless to get help for anything because we’re going to die, I should probably do so anyway so anyway because, equally, why not? I’m still officially discharged from the CMHT, but I’m now back there for treatment for my shiny new (old, since I’ve been living with it for 12 years) diagnosis of panic disorder. That’s a very mild way of putting it that my life, for the past six months, has been consumed with a terror of death, which has graduated into a terror of anything dead (so I’m missing the supposedly marvellous existentialdeadfest The Returned) and being strangled with bouts of intense, “Oh, I’m dying, then” anxiety and panic attacks. And it’s been kind of ruining my life, hooray!

It has taken me so long to ask for help with this that waiting until September at the earliest for a therapy assessment (I assume CBT, the panacea of mental health problems) seems like a gentle sit in the park. In the meantime, I’ve been prescribed an antidepressant in handy syrup form (to mess with the dose should I need to, and also, too many pills) and the mood stabiliser and antipsychotic have been hoiked up so I don’t become a spinning top. On the downside, it means I’ll add even more weight to my already not insubstantial arse.  This depends if I take the higher doses- it’s up to me, really.

So, that’s what’s going on with me. How about you?

Happy father’s day to my dad, six years gone. And thank you.

Repost from last year.  Nothing has really changed, except he’s been gone for 7 years now.

Happy father’s day to my dad, six years gone. And thank you..

Stephen Fry, suicide, and the cycle

Stephen Fry (who I hope is feeling better now) has opened up in a podcast with Richard Herring and spoken of a suicide attempt he made last year.  I won’t link to the text as it’s a rather hardcore description and, as much as I could be, I felt triggered by it as I had a similar physical reaction (convulsions and a seizure) during my own suicide attempt and I get flashbacks which aren’t nice.  Here’s the podcast, though.

I have the utmost respect for him for speaking out on this.  I have sometimes, as many others have, attributed the oft-glamourisation of manic depression to Stephen Fry.   But none of that was ever his fault.  Our mental health is ours, so intensely personal yet so common, that when someone talks, publicly, about their experiences, we feel aggrieved that they are not exactly describing our own.  We bear different pasts but the same diagnosis. If we are struggling, unwell, lost, I think there’s a sense of feeling cheated that someone else isn’t.  Especially with celebrities who may speak out but not have to suffer through the NHS, money problems, social services and all the insidious intrusions you have to live with when you have a mental illness. But pain is pain. It may be dimmed by money or fame, and it may not.

The recovery narrative of mental health can forget that people die because of their mental health problems. Not solely, of course.  Sometimes it’s everything else that can kill; the mangle of the benefits system, the guilt and shame of knowing you’re being judged when you’re buying groceries, the isolation from those who no longer know what to say to you, whom you might have hurt, or whom may have hurt you. And this is getting worse and worse, with the benefits system crueller than ever, seemingly trying to make people kill themselves, the stigma becoming more and more, and harder and harder to live with.  And not much is being done to help. All that can kill you, too.

All that, or nothing.  Stephen Fry said,

“‘Fortunately the producer – I was filming at the time – came into the hotel room and I was found in an unconscious state and taken back and looked after. ‘You may say, “How can anybody who’s got it all be so stupid as to want to end it all?”

“That’s the point, there is no “why?” That’s not the right question. There is no reason. If there was reason for it, you could reason someone out of it.”

This, for me, is the most uniquely horrible thing about living with a mental health problem.  Sometimes, there is no reason. Last year, just after my wedding, I started to become depressed.  The depression continued, strangling me, slowing every movement down to indecision whether I woke up or not, got dressed or not, moved or not, stayed or went or lived or died and I couldn’t decide.  I locked myself in bathrooms, I was mute or repetitive, going over and over on the same tiny details to avoid the huge one in front of me.  That there is no reason to live, and I wanted to die. The closest I came was one night in November where I stood at the side of road then just walked out in front of a car, which stopped, the driver swearing at me.  I fantasised, selfishly, about an, “accident”, so I could leave and not be blamed, no notes, no reasons. I would be tragic and frozen and immortal as a bride and not as the mess I was.  I was a newlywed and I felt I was standing outside my own body screaming, “THERE IS NO REASON FOR THIS.  CHEER UP, CHEER UP, STOP” and it made me feel lower and lower and lower.  My husband wasn’t supportive as it looked like the wedding had caused my depression.  It hadn’t.  The sense that I had let him down, let everyone down, killed me.

I become depressed, like clockwork, at the same time every year.  All my forays with hospitals, suicide attempts or the crisis team have been almost at the same date.  It’s so predictable and yet, every single time, I forget. I think something will save me; a wedding, love, anything.  It doesn’t- it never will.  And it will come again and I find it terrifying.  It is what in periods like this, where I am otherwise mentally fine but having panic attacks, makes me want to step into the road again. To take control.  To end the cycle, once and for all. It is so frightening to see your life mapped out like that.  To be happy and to know that you might be returned to that horrible place, and you might not return from it.

And because there is no reason, it is hard to get help.  It took me a few months to actually admit to myself that I was so depressed I was dangerous. I blog, and talk, and tweet, but getting me to actually visit a doctor and say, “I WANT TO KILL MYSELF” is hard.  Somehow, those words take on a terrible, solid form in that room.  It becomes real and vivid and the doctor has to argue with the person inside of you that wants to kill the host.

This isn’t to be self-pitying. It’s a plain fact. For whatever reason, whether it’s biological, psychological, social or all, people with mood disorders will have mood swings and they almost always will happen again and again.  Some people rumble on for years and are fine, some people, like me, have a seasonal pattern to their moods and tend to become unwell around the same time every year.  I do much better than I ever did, as I used to have good old fashioned rapid cycling and became unwell quite regularly. Now, my high moods are pretty much under control as long as I take medication and sleep enough, but I still get depressed.  I don’t expect to- like I said, I forget I do- but there is it. HOORAY! I feel I am as lucky as I can be in my life, in many ways, and that makes it more frustrated.

Recovery from mental illness is real. People live with it, every day, and although 10-20% may die from suicide, the rest are out there, like you and me, still living their often difficult, sometimes wonderful lives.

I think that, me included, we all thought that when you let the genie out of the bottle, it lost its hideous power. But we were wrong.

Irish Writers in London Summer School: 13 June-19 July

A wee plug for this!  Firstly because I’m one of the writers (hello! 26th of June should you want to hear my blather) and secondly because I think it’s quite a unique course.  For lovers of Irish literature, here’s a treat for you!

18th Irish Writers in London Summer School

13 June – 19 July 2013

 

 

First established in 1996, the summer school runs for two nights a week for five weeks and provides an informal but informative setting for students wishing to study Irish literature over the summer. Each week a set text is discussed in class on Tuesday evening and the following Thursday, the author reads and/or speaks about it to students.

 

When you find the changing seasons affect you without reason

So, not posting the thing my husband wrote as he isn’t comfortable.  It was about looking after your own mental health and his experiences with his own mental health. In a nutshell! Just pretend you read it. WordPress psychosis.

With that not being posted, HOORAY! It’s summer, sort of! HURROO, is anyone else’s sleep completely messed up?  I’m knocking out a good 3 hours a night, even with medication, and it’s starting to get to me. The medication dulls me still so I’m not hyper, just twitchy and shattered and with a face increasingly representing a pug’s.

Please bring me food and water and a blanket and some sort of large cup of something I AM TOO TIRED TO THINK

I need to go to bed right now, but I also need to eat something as I haven’t since 3pm.  I am too tired to cook, and too tired to move off this sofa, so I may have to eat the sofa. (Insert fibre in your diet AAAAAH joke here).

I don’t think the mood disordered are alone in finding that their sleep deserts them when the seasons change.  But it is a pain in the hole.

This is a bit of a pointless update.  I AM FLIPPING KNACKERED!

Seven years since my days died

I have something from my husband to post but it needs editing so not yet.

It was my dad’s 7 year anniversary on Friday. We walked down the aisle to the song we played at his funeral.

He died in 2006 from alcoholic liver failure at the age of 47. I have numerous friends older than my dad at his death. I spent the day in bitter reminiscence at the disgusting way he and my family were treated as he was dying because he was an alcoholic. I have no experience but I’m willing to bet the families of cancer patients aren’t asked why they didn’t stop them and pushed roughly aside by staff and treated with the utmost disgust and disdain. Willing to bet their dying dads with heartbroken children weren’t treated as though their dying was their fault. My dad’s death was the most painful event of my life and they made it worse. My big sister Paula was there for most of it and she has far more tales to tell. I am bitter and I always will be. Even more embittered at “mental health activists” who rant against stigma yet treat people with addictions like scum unworthy of help. Attitudes like yours helped isolate my family and contributed to my dad’s death. Cheers. There is no hierarchy of suffering and help. If you want people with schizophrenia to be treated humanely and to have access to services, same should apply for addictions and personality disorders, considering how everything is linked. No exceptions. People who overdose can get new livers. My dad couldn’t (but George Best could) and endured being told that and knowing with certainty he would die.

Robert looked after me but have felt fragile all weekend. My dad’s anniversary is always a time for reflection. The past year has been so hard. I wish he had been here. I had a drink in his honour. Even more in his honour, I stopped at that one.

So that’s me, proper blog soon.

Now I Am Six: Happy birthday to my blog!

But now I am six, I’m as clever as clever;
So I think I’ll be six now for ever and ever.

I missed my blog’s sixth birthday! Sorry, m’blog! It was in February. SIX YEARS! That’s an elder statesman blog. No wonder I can’t keep up with all you young hoodlums and your fancy domain names and your twitters and cookbooks. You’re all out there using hashtags and I’m pushing a hoop down the street with a stick thinking it’s my cat.

This is what Facebook looked like in 2007. I’M OLD.

Six years of blogging here. I think this blog was one of the first mental health blogs in the UK. It was started when blogging was really beginning to take off as a platform outside the realms of places like Livejournal and Xanga. I didn’t even really intend for this blog to be widely read; I never advertised it anywhere and only linked to it on my own Livejournal. So I’m surprised now, 6 years later, it’s amassed over 1 million hits! And had a radio play based upon it, which I still find so very weird! Weird! But lovely. Many odd, interesting, “Oh!” and, “Hooray!” things have happened as a result of this blog, and I’ve met many odd, interesting people as a result of it.

Mental health blogging has taken off since then. There are many more blogs now, and many more blogs out there that are better than mine. It’s fantastic to see a whole generation of people with mental health issues speaking out- honestly, openly and, to be honest, rather fascinatingly. They’re windows into the rooms of places whose doors are locked. You don’t have to a great writer to start a blog. You don’t even have to be a good one. It doesn’t have to be for anyone but yourself if you don’t want it to be. But I have found immense value in writing here. I’ve tried to pull away, many times, but this is my blogging home. It feels comfy. And, despite some arsehole trolls over the years, it feels safe. It’s one of the reasons I’ve kept it almost exclusively about mental health, as it’s my safe place to talk about it. It isn’t this clanging anchor I drop into conversations here; it’s the purpose. It’s full of scattercushions and dogmarked photographs, of scrappy recollections and half-forgottens-then-found. I love seeing familiar names pop up in the comments, and new names, too. I like that I might have had a hand in popularising, “mentally interesting” and, “mentalist”, as they’re both delightful words. The latter in particular has been reclaimed by the blogging world.

If you’re looking for my first posts, you won’t find them, as I made about 500 posts here private when I was looking for work. And really, would you want everybody to read what you wrote on the internet when you were 21? But I will return them to their published form. Although I’m a wee bit scundered (Norn Irish for embarrassed and the name of my never-to-be-published autobiography) by some of it, I’m not ashamed of any of it.

I was a baby when I started this blog. 21 years old with the life experience of a fifty year old but with the emotional maturity of a 15 year old. I had just weathered the duel storms of my father’s death and the hospitalisation that led to my diagnosis and the seven year long (so far) wrestling with treatment and the mental health system. The tagline of this blog used to be, “Navigating the labyrinth of NHS mental health services”, which I found my way out of in 2011. I, like a lot of people my age, have grown up online. I’ve kept journals since I was 12, and for me, the internet is partly an extension of that need to record. I kept my teenage diaries in fitful loneliness, longing to share my thoughts with something else other than paper. Which probably accounts for why I have the tendency to overshare a little! But I love being able to find a date and look back. My memory is legendarily awful and here is my six years of dropping stones to see which path I took, and how.

A lot has changed. I’m 27 now, but I feel as though I’ve aged another decade to that. Within the past four years particularly I have changed a lot. My life is fairly unrecognisable to how it was; I am still the same person I’ve always been (as evidenced by my dress sense failing to evolve from the one of my 14 year old self), but a quieter one. I sometimes miss the whirling dervish I was, but it’s still there. Emotionally, I’m a grown up now. I used to fear that mortally, but now I have no nostalgia for my past self in that sense.

I’m married, to someone I absolutely did not expect to be, I am, for the most part, ten times healthier than I was when I started this blog (and ten times fatter, alas!) I’m still messy and mental, but I prefer the person I am now to the person I was then. I always feared growing older, but didn’t anticipate the hugging hum of peace and confidence that comes with it. When I look back, there are so many times I was on the precipice of disaster, and I am thankful I never took that step and let life unfold. When I look back, there is more happiness than I imagined I would have.

Life hasn’t turned out as I expected it to, and there have been a few opportunities I have let slip through my fingers. I need to write more and work harder at that, and to do more with my life in general. I enjoy the standing still sometimes, though, the intake of breath before the drop.

So, a lot has changed! But I’m still here! I couldn’t have said, with any confidence, that I still would be 6 years later. Hooray and tough luck!

And a massive, huge thank you to everybody who has stuck by me all this time. You’re all so very soft and sexy. I hope that some who have come here in grief have found peace, and those who have come for help have found it. Much love, and if I’m still blogging here in six years, please, pull me off the internet, drive me to the countryside and abandon me in the woods to frolic with cartoon deers.

xxx

Hyperbole and a Half: Depression Part Two

Allie disappeared after Depression part 1. 19 months later, she’s thankfully reappeared with this.

It’s the most accurate thing I’ve ever read / seen about depression.  I want to print it out and hand it to those close to me, for the times when I don’t have words. 

And it’s funny.  Go read! http://hyperboleandahalf.blogspot.co.uk/2013/05/depression-part-two.html?m=1

Saw GP today

Quick post, I am shattered.  Went to the GP today and she was absolutely brilliant.  Almost cried with relief. Have been referred back to CMHT (boo) but in the hope that psychological therapy (probably CBT I imagine) is quicker.  She said too that with bipolar she imagines they would want to have CMHT involvement to be on the safe side, even if that’s not what therapy is for.  Also to check my medication.

She was just great.  She didn’t rush me, understood how difficult it was for me to talk about it and was really supportive.  She took me seriously, reassured me it was common and let the appointment overrun. I felt like I could be honest and I was. She was surprised it had taken me so long to properly ask for help with it, but there you go.  She said now could be the start of getting better.

I also mentioned my legs thing and my anxiety that I had blocked arteries and was going to die soon.  She said getting panic attacks sorted first is a priority but she also took my concerns seriously.  I was really scared she’d say, “Oh, you’re anxious!” without understanding how real this has felt to me.  (I managed to take off a toenail yesterday when I ran out of fingernail biting space, that’s how anxious I was).  She took the pulse on my foot and it was strong, which is very reassuring.  I told her I was scared because I was fat (“You’re not that fat”, she said, exasperated.  I am used to EVERY DOCTOR EVER attributing things to my weight, even when I wasn’t overweight, that it’s nice to hear.  And I don’t take fat as an insult so I wasn’t offended, I know she meant it in a, “Your weight is probably not causing this” way) and smoked, and she said that it was unlikely to be peripheral arterial disease at my age, but has referred me for blood tests and said if my leg problems get worse she’ll refer me to the vascular team. Even if I am worrying over nothing and it’s something as stupid as ill fitting shoes, at least I know that if it isn’t, something will be done.  She said if I got the pain it’s important to walk through it so I should get more exercise, too.  I was limping today because I’ve wrecked my toe.

In other news, I really need to stop smoking and stop drinking.  The drinking part will be easy enough (but it’s summer, hiss), but the smoking part I need to brace myself for.  I’ve used NRT without success and I don’t want to be dependent on nicotine, either.  The last time I quit, I used Champix, which was an absolute disaster and which I was told afterwards should never have been given to me.  It was fecking terrifying, it was one of the healthiest and happiest times of my life and then within a week I was completely suicidal.

This time I’m going back to trusty old Allen Carr so I need to get in the zone.  I do want to stop smoking as I spend half my life terrified of what it’s doing to my body.

So, it was a really positive appointment and I left feeling much better. I am completely exhausted as I managed 2 hours sleep, then the appointment was early, then off to work!

I’ve put the previous post back but I’d remind people to be kind or be quiet. I can take a lot on the chin but when someone is struggling and admitting to it in such a public way, it’s not nice to kick them when they’re down and from now I’ll just delete the comments.  If someone said it to my face I’d tell them to feck off, so I’m not taking it here.  Criticism isn’t the same as unkindness. Often when I post, I’m not seeking advice.  I’m venting, seeking experiences or just helping myself find a bit of perspective. Just so you know.

Panic on the streets of London

If you follow my Facebook page (linked to the side) you’d have read me going on and on about the panic attacks I’ve been having lately. (And also been so super supportive that I could kiss you all with tongues).

I’ve been having them for a few months, but the intensity and frequency has gone off the chart lately.  I go through cycles of this.  Twelve years worth of cycles in fact. I don’t have to be depressed, in fact, they happen more often when I’m completely stable.  When, like now, I am fairly happy. It’s as though my mind goes, “Well, here’s a rest period, enjoy yourself- HAHAH AYE RIGHT! I’M YOUR BRAIN, I HATE YOU, REMEMBER?!”

And panic kicks in.  I have a few months where I am having panic attacks a few times a day.  They catch me everywhere, no trigger, no reason.

It’s always about death and dying.  And I have lived with them and the periods I tend to have them in are episodic and they do pass.  But always return.

I have never talked about this in any depth with anyone outside my immediate relationships.  The people who bear the brunt are the people who I’m in a relationship with.  My current relationship (now marriage) has lasted four years and the one before also lasted almost four years.  They’re the ones who have seen me launch myself across the room, screaming.  So, you know, you have to explain. My husband saw it happen last week.  I started screaming, jumped out of bed, ran into the living room, throwing myself at walls, clawing at windows, knowing I was going to die one day and my heart beating, stopping, thumping feeling as though I was doing so. He was shocked, and almost impressed, in a morbid way.  He said it was like watching a force of nature.  And it is, in a way.  The primal fear of death.

The catalyst for seeking help this time is that, for the first time, I’ve been experiencing significant dissociation/depersonalisation before/during panic attacks.  It is fucking terrifying. I feel as though my spirit is leaving my body (and I don’t believe in gods or spirits) and I have a fear I’m going to collapse and die immediately.  I know this is my mind trying to protect me but it’s so scary. Last week, I had something that seemed like a seizure. I was overcome with nausea and my limbs started shaking. My eyesight kept blacking out and I couldn’t stand up.  I felt heavy and unreal. In retrospect, I think it is something to do with the panic.  I was completely freaked out and we were on the verge of getting an ambulance. I was also fairly mortified.  You don’t want to lose control like that in front of someone you love, especially when a few minutes ago, you’d been happily in bed with BBC 4 on the laptop.

I have panic attacks in the street. I have them just out walking. I have them on the bus. I have mini ones at work where I suddenly feel intensely fearful and begin shaking, begin thinking something is going to happen.  They wax and wane.  They come on without warning. My world is getting smaller and smaller as I am constantly afraid of having another one.  I’m not sleeping well because I’m too scared to go to bed. All that works is constant distraction and stimulation, and it is exhausting me.

I’ve been having calf pain while walking for a few months, too.  Quite intense pain which stops when I stop.  I am terrified it is intermittent claudication which means I have peripheral arterial disease and I will die of a heart attack or stroke. Yesterday  while having a brilliant time at a football match with my husband, I sneaked away and locked myself in a bathroom to exam my legs for discolouration  I have managed to convince myself of this and couldn’t sleep last night because I was convinced if I did I would die. I keep imagining arteries in my legs blocked and rotting. Rationally, I try to tell myself that, although I’m a fat smoker, I’m also a 27 year old woman with lowish-normal blood pressure and no diabetes.  But it’s not happening and I am going to have to bring this up to the doctor tomorrow to, as well as panic.  I am hoping she won’t dismiss me. It’s a new surgery since I moved and she seemed lovely last time I saw her. She said they were always there and if they weren’t meeting my needs to give them a poke. It’s reassuring as my last place was a shambles and appointments took so long to get I neglected my health a lot.

For all my talk about speaking up, though, I’m not good at doing it myself.  I have”recovered” to such an extent that I feel ashamed when I do struggle. I don’t really know what I want out of the appointment, either. I can’t take antidepressants and I’m scared of therapy because talking about what I’m afraid of doesn’t help.  It’s death, there is no talking out of it. It makes me panic more intensely.  I’m also a bit wary of having another mental health diagnosis.  When I was first diagnosed with bipolar disorder, I was a young, rather dogmatic person.  I collected diagnosis, I diagnosed myself with everything as a way of explaining myself.  I feel, seven years later, very differently about all that. Bipolar disorder has been the one that seems to have stuck (BPD traits still in there somewhere too on my rap sheet) but I have a much deeper and richer understanding of how my life has impacted on my mental health (and how I can impact on it with my lifestyle).  I don’t particularly believe in the medical model anymore and have no desire for another diagnosis or more medication. But I also understand that I probably need a diagnosis to get some treatment, really.

I know I’ve had a lot of stressors lately, too.  So much for the, “honeymoon” period.  Since our wedding, we’ve had an appalling run of bad luck and shittiness that has pushed us both to the limit of coping. I’ve also had a depressive episode (my usual autumn-winter one, yay), so did Robert, I left my course, started new jobs (still don’t have a permanent one but am enjoying what I’m doing) and have had some problems that were very stressful.  In some ways, I am stronger than ever. I’ve coped well with everything when I would have been entitled to just lie in bed for a month. In other ways, though, I’m not surprised my panic attacks have gotten worse. I’m fairly happy at the moment (also hard to explain, happiness being a trigger in itself, being happy and then a panic attack comes, shouting, “BUT IT’S ALL MEANINGLESS, EVERYTHING DIES”) and the calm after the storm is a dangerous time.  I think I once mentioned, “the happy suicide” on here.  By that, I meant that after a happy day, my panic tends to be worse because it reminds me of what I will lose when I die and when the people I love do. In that sense I get an urge to take control of my destiny myself, by ending my life and thus end the fear.  But (obviously) I’ve never done it.  I think my mind is having a shitfit at everything.  But I am also aware that this has not always happened because of any stressors- sometimes, it’s just happened, I’ve just started to have panic attacks again for feck all reason. YAY. BRAIN. AWESOME. WANKER!

Anyway, wish me luck.  I am really dreading this.  Robert’s walking there with me after work but I want to face this appointment alone.
Edit: Reading this back, I sound like a fecking nutcase.  I’m not, I promise. I’m not racing around the place going, “ARRRGGGH!” at people.  You wouldn’t be able to tell any of this by talking to me.

I Smoked All of England’s Cigarettes: Mental Illness and Smoking

I was supposed to stop at the age of 25. And never on my wedding day. How could I say, “Til death do us part?”

Whoops.
There’s a lot in the press right now about smoking and mental health.  This article in the Independent outlines somewhat baffling advice from the British Lung Foundation...

Smoking may be a sign of psychiatric illness, experts say. Doctors should routinely consider referring people who smoke to mental health services, in case they need treatment, they add.

The controversial recommendation from the British Lung Foundation, a charity, comes in response to a major report, Smoking and Mental Health, published this week by the Royal College of Physicians and the Royal College of Psychiatrists with the Faculty of Public Health. It says that almost one in three cigarettes smoked in Britain today is smoked by someone with a mental disorder. When people with drug and alcohol problems are included the proportion is even higher.

The reason is that smoking rates have more than halved over the past 50 years, but the decline has not happened equally in all parts of society.

“Smoking is increasingly becoming the domain of the most disadvantaged: the poor, homeless, imprisoned and those with mental disorder. This is a damning indictment of UK public health policy and clinical service provision,” the report says.

First of all, smoking is the domain of the poor because it’s (relatively) cheap compared to the vices of the rich; fancy dinners, gambling, harder drugs and alcohol. Smoking also doesn’t carry the self-righteous stigma that it does in the middle classes.

Secondly, causation does not equal correlation.  A lot of people who have mental health issues smoke, ergo, people who smoke must have mental health issues?

I’m all for early intervention, but mental health services are already snapping beneath the weight of the draconian cuts levelled upon it. Referring people who might possibly have a mental health problem isn’t going to ease that burden.  And people should choose if they want a mental health assessment.  Obviously, there are cases when choice is limited (lack of insight, mental health act assessments) but general speaking, if a person is able to, they should be able to choose.

Thirdly, I think this recommendation fundamentally misunderstands the relationship between smoking and mental health.  It’s true that a lot of people with mental health problems smoke- up to 90%- and providing them with support to quit?  Awesome.

But it’s fraught with problems.  I’ll use myself as a case study here.

I started smoking when I was 15 as a result of peer pressure.  Around that age was also when my had my first onset of mental illness, so I smoked to calm down.  My mum (who smokes heavily herself) condoned my smoking because, “It was better than you cutting lumps out of yourself”. Fair point, my mum, there.  She’d sigh heavily (is there another way for a lifelong smoker to sigh?) and pass me a Berkeley when I was stressed. Eventually, I took the piss and would sneak into her bedroom when she was asleep and steal two.

This smoking was furtive-out-the-window-fuck-the-curtains-are-on-fire teenage frippery.  I continued to smoke, but it wasn’t until I was 20 that I could smoke as many as my age.  How did this start?  I was hospitalised in an acute ward.

This was before the days of escorted smoking breaks.  We just had a large, blue carpetted, nicotine walled room to huff and puff in.  And so we did, because there was absolutely nothing else to do.  Oh, there was a jigsaw with half the pieces missing and a television permanently tuned to ITV for the people too deep in psychosis or depression to move from the busted leather chairs, but those were the activities advertised in the brochure. Bugger all else.

Smoking was currency in hospital.  If you gave someone a cigarette, you were MBFFLs (Mental Best Friends For Life).  It was also an activity that was at once social and isolating.  It was social because you were sat in a room with other people in contemplative quietness.  And the quietness was important and holy in a, “therapeutic” environment soundtracked by screams, alarms and wails.  In sisterly silence, you could, if you wanted to, turn and speak to someone without the oppressive presence of the television looming over you.  More importantly, it was without the oppressive presence of nurses, who rarely strayed too far into the smoking room for fear of instantly developing lung cancer. (A lot of mental health nurses smoke, too, by the way.  Not enough for me while I was on placement! I always honed in on the smokers and stuck to them).

The room was a pub, a living room, a garden.

Hospital is a difficult environment and, although I encourage health professionals to support people to stop smoking, it’s the worst place to do it.  My trust went smokefree last month, and I’m quite glad I left my course beforehand.  The lighter is a treasured object indeed- and it’s one of great power.  Timed smoking breaks wrack tension up.  I’ve been there myself as a student nurse- five minutes late and people begin to get agitated.  Would this be removed if nobody smoked?  Yes, in a perfect world.  But in this environment, where you enter and go through the mortification process (I recommend Goffman), the freedom to smoke is an important one. It gives a sense of bodily agency and autonomy in an environment where such things are flagrantly disrespected.  “For the greater good”, often, but people are still given medication, either willingly and unwillingly, by other people.  Swallow a pill.  Do you look at it first?  Do you know what it does?  What it’s for? Do you pause before you take it?  Do you feel a little violated when it goes down your throat? Gag, maybe?

And in psychiatric units, bodily autonomy goes out the window.  If you take medication, it might be the same medication you took in the Real World, but you can’t stay awake all night and watch TV (not allowed, too loud), or sleep in until the afternoon (not allowed, either). Whereas none of your personal rituals may be healthy, they are still yours, and you cling to them in an environment as unfamiliar as a hospital. Similar with self harm.  It might not be a healthy coping mechanism, but it is your own.  Hospitals are distressing places, and using the method that helps you cope gets you punished because it distresses others in turn.  Go figure.

In the more unhappy wards, smoking can also be used as an instrument of power.  I must say that I have never witnessed this myself (even working in a secure unit, where privileges such as leave are lost if you don’t behave), but I have heard of such things and I believe it is possible. You want your smoke break?  Then you’d better be good.

When I was in hospital, I was given Haloperidol to slow my pinballing down.  It did a fairly good job.  But seven years later, I still take antipsychotics.  I am on a way, way lower dose than I used to be, but there they are.

Antipsychotics are primarily, but not always, prescribed to people with psychosis.  Psychosis can be a distressing experience and smoking can give a respite for that. There’s also anxiety, restlessness, loneliness.   It’s a complete contradiction- nicotine is activating, not relaxing- but the ritual itself helps me calm down.  Antipsychotics also have complex interactions with nicotine- typicals like Haloperidol more so. 

So, you’re a mentalist and want to stop smoking.  Applause, because I’d love to. Doctors absolutely should focus on smoking cessation with people who have mental health problems.  The fact that so many people who have mental health problems smoke contributes to our pitifully short lifespan.

What do you do?  Well, first of all, sometimes smoking is the least of your problems.  I was actually told this, straight out, when I was hypomanic and thinking I’d be brilliant and go to the gym and become a sliver of gorgeous purity.  I’d also come off all my medication.  And I did the opposite and was smoking more than ever anyway.  But I still wanted to.

“Don’t quit smoking- do you really need more stress right now?”

Fair point.  And when you have a mental health problem- when is a good time?  When you’re stable?  How many people are stable?  When you’re depressed? Depressed people smoke.  Hypomanic? Not going to listen anyway. Psychotic?  Good luck with that. Where is the window of opportunity to broach this subject?

As for the methods.  Well, stop smoking groups with NRT or medication are generally fairly successful, which isn’t saying much as stop smoking methods are generally fairly pitiful in effectiveness. How easy do you think it is for someone who has a mental health problem- which could include lack of motivation, agoraphobia and social anxiety- to go to a group?  Motivated enough to pick up their NRT prescription? Do many people who have mental health problems, especially those who take medication, have awesome memories? Awesome enough to remember that patch? And the magic-bullet pills.  Speaking for myself, I took Champix and it made me impulsive and suicidal.  I went from the kind of place where I was committed to stopping smoking to running around the flat fantasising about how to hang myself, and actively planning to.  I was pulled off it, sharpish, and went back to smoking.

And here I am, with a fag hanging out of my mouth, tapping this to you.  And there’s another reason; vanity.  Yes, it makes my clothes stink, I cough, my teeth are fucked and my cat makes a scrunched up, disappointed face at me and runs from the smoke.  But I’m a writer. And writers smoke. It means I can romanticise my sitting in my kitchen needing a wee and listening to awful 80s radio.  I have a cigarette in my mouth and I’m on a laptop.  I am following in the traditions of the greats. Yes. That must  be it.  Bollocks to this mental health stuff, then.

Working with bipolar disorder: Guardian article and your thoughts please!

Hello! I was interviewed for this article in the Guardian:

http://careers.guardian.co.uk/careers-blog/bipolar-professionals-challenges-workplace

It’s estimated that bipolar affective disorder affects one in every hundred people in the UK. But what are the challenges faced by bipolar professionals in the workplace?

When suffering manic episodes, bipolar professionals can experience mammoth boosts of uncontrollable energy, resulting in incessant flows of incoherent ideas, which they feel compelled to act upon with great urgency and sometimes aggression. This can be difficult for colleagues. For example, Seaneen Molloy-Vaughan, who currently works as a writer but has experience in the healthcare and charity sectors, says such behaviour has led to “trouble with professional boundaries”.

Likewise, depressive episodes can also be difficult to manage at work. When Molloy-Vaughan has suffered depressive cycles she has been “withdrawn and snappy”. This behaviour stresses relationships with colleagues and in extreme cases can lead to disciplinary action if the real cause of such behaviour is unknown.

Medication for bipolar disorder can also take its toll with side effects such as drowsiness, nausea and poor co-ordination. Molloy-Vaughan reveals: “At the beginning I was unable to work because I was too unstable. I was also starting medication and it took a long time to get the right dosage. I had a lot of appointments and this time commitment, alongside the behavioural side effects, made it difficult to hold down a job.”

It’s a good article but I quickly want to make it clear that by professional boundaries, I’m referring to hypomania some years ago when I thought my great ideas should be shared with the company directors when I was a temp admin, and “behavioural side effects” refers to drowsiness, not me running around and kicking cats or anything!

I’d be interested to hear your thoughts- for those of you with any mental health problem who work or volunteer, how do you find it? 

This is a good a place as any to also say that I left my nursing degree in February.  The straw that broke the camel’s back was I did return after my sick leave.  I was reassured by my tutor that my placement would be 9-5, just to ease me back in and take some of the heat off.  I was actually assigned pretty much the same placement I was on when I had my mini-breakdown last year and was told, basically, suck it up, and if you can’t handle it, don’t be a nurse.  And to be fair, I couldn’t.  The shame is, I was really bloody good at it and academically one of the best in our cohort. I didn’t leave in a huff, I had, as you know, been thinking about it for a long time but was very torn.

I’m currently working as a temp copywriter at a charity, which ends in 2 weeks, then I have another six week job lined up then into the great unknown!  I am happy with my decision, it was killing me (I can’t work shifts, I need to accept this) and making me absolutely miserable.  I will also never, ever be comfortable giving people medication.  I really miss working with patients, though, and mental health is still my joy and my passion.  So I’m also applying to study psychology part time.  Even if nothing comes of it, just learning about our minds and our society, the complexities, the pathologies, the brain and the body, will make me happy.  And in a lot of debt!

I have a ton more to say but still not sure how to say it here.  Suffice to say, I am happier with my uncertain future than I was with my certain one.  My depression has finally passed, too, thankfully. On the subject, though, I am struggling a bit with full time work at the moment but it’s largely because life has handed my ass to me in the past couple of months and I’m extra tired, but managing better by the day.

Things are getting better, though, a lot. I am still fragile and quite emotional, but and I am crazy proud of how I have handled myself in the past few months, a few blips aside.  I have done nothing that I would have done when I was 21.  I haven’t hurt myself, freaked out, done anything destructive and have been thinking clearly, been strong and been honest, and above all, seeking people out, which is something I have been afraid to do for most of my life.  And they were there for me, they’ve always been there for me.  It’s okay to let someone take care of you once in a while, it’s okay to be vulnerable in front of someone.  It’s okay to be wrapped up in a blanket and let people bring you food, let someone stay with you while you sleep.  You don’t have to internalise everything and cope on your own, which just makes you fester in self hatred.  It’s taken me 27 years to realise that.

It is knowledge I will try to carry with me for the rest of my life which will make me strong. I’m proud. And incredibly thankful.

Wow, two months since my last update!

Phew, been a long time!  I don’t have time to write at the moment but checking in.  The past two months have been an absolute clusterfuck, to put it mildly. But things are on the up now, so I will be back soon!  Hope everyone is okay. 

The new Work Capability Assessment Does Not Care About Your Medication

The WCA is now not going to take the debilitating physical effects of your psychiatric medication into account.

Hey! Do what I did!

Keep working when you’ve just been released from hospital and spent six weeks with the home treatment team watching you take your medication every night. I mean, you’ve been totally stripped of your autonomy as a person and your life has fallen apart and you’ve been hit by a missile but you can work! Keep working when you start medication because you can’t claim benefits as you live with your partner. Keep working and then realise that your work colleagues think you’re an alcoholic because you can’t hold a phone because your hand is trembling so much because of lithium. Because your speech is slurred because of antipsychotics. Keep working or get a job because they don’t care and then stop taking that medication because you can’t work through the side effects and because people are laughing at you. Because you can’t get time off anyway to attend your appointments. When you do you’re too ashamed to tell them about the effects it’s having on you. You want to look better and healed. Don’t tell them you’ve come off your medication, just carry on looking more and more unstable. Then take it again. Your body weight has changed and you get Lithium toxicity. And you shake and vomit at work and obviously, the medication isn’t working because you hadn’t been taking it. But you’re taking it again! And then stop taking it and just get ill over and over and over again. And because you got ill again, you lost your job. But get a new one! And keep working! In your next job, get fired because you can’t wake up in the morning because your antipsychotics. And then stop taking your antipsychotics and get sick again. On top of this is the self loathing you have because you got fired. Again!  And you’re sick! Again! Up that dose of antipsychotics, then. But that’s okay!  Not all jobs mean getting up in the morning, yeah?  Shame you’re really drowsy the rest of the day, too. Move out of your partner’s flat and leave his mum to pay the rent because that’s the only way you can get benefits. Scorched earth policy, and now you’re single, too, and you’re still ill. Damn. But keep working! KEEP WORKING because you WILL NOT GET HELP FROM THIS GOVERNMENT. Like I did in the end.  Which I wouldn’t have gotten now.  If I were as exactly as ill as I were then, I would have died instead.

Oh, and by the way, if you don’t take that medication, you’ll get sanctioned.

So keep working until you die and they don’t have to worry about you anymore.

KEEP WORKING.

The Existential Crisis: Zombie, zombie, zombie

So, I was asked for an update on my, “fascinating” life.  Which is not at all fascinating.  For the past few months, my life has only existed internally.  I have barely gotten dressed in the past four weeks, and have been- though trying on occasion not to be- at my quietest and most reclusive.

I am in turmoil about my life choices, and I feel at a crossroads but have no idea which way to turn.

This will be a serious and extremely naval-gazing entry. Better out than in, and it would probably be best to write it privately, but the desire for a human connection is partly fuelling this.

Me on Radio 4 discussing welfare with Big Issue founder John Bird

It can be found here, about 14 minutes in:

http://www.bbc.co.uk/programmes/b01pnlt0

It was on BBC Radio 4’s Broadcasting House last Sunday (6th January).  Sorry I didn’t post a heads up beforehand!

The discussion was very brief.  The gist of his argument was that benefits trap people and keep them in stasis.  The gist of mine is that that isn’t true- for example, with Jobseeker’s Allowance alone, only 1 in 4 people are even on it a year later, let alone five.  I am also, “one of those” for whom benefits have been invaluable in helping me get my life together.

Anyway, have a listen and tell me what you think.  Sorry for the radio silence here, I’m still in the mud at the moment; will post more soon.

The Legacy of a Label

On my sick note is scrawled, “BIPOLAR DISORDER”. The medication I’m prescribed is for bipolar disorder.  And yet I still struggle to say, “I have bipolar disorder”.

In 2007, I said it a lot.  Newly diagnosed and in that unavoidable, “overidentification” phase (which you may after, or instead of, denial).

Now, even with psychiatric and doctorly and friend-o and husband-o opinion agreeing with that, I still can’t say it without much hesitation and an immediate feeling that I have just told a terrible lie.

Some of you may remember that a few years ago, and after listening to the Radio 4 play based upon this blog (that sounds arch and insulting, but apparently it was part of the rationale, though having spoken to him in the past year, I give more credit than that and may have misinterpreted), my psychiatrist at that time said I did not have bipolar disorder but borderline personality disorder. This was a punch in the gut.  I had always been open to the idea that I had borderline personality traits (I certainly did when I was younger and I cringe thinking back to some of it) but I had accepted I had bipolar disorder.  I spent years on punishing medications, which is one of the reasons I think he changed it to BPD, without knowing that I was quite uncompliant most of the time, because the side effects were horrendous.

This diagnosis came at a time when I was doing very well, was stable and quite happy and had actually approached with to ask if I could have help coming off my medication. Which he said I didn’t need.  And said I shouldn’t, “self diagnose”, a punch that missed the stomach and went straight for the balls as I had sat in room after room being told not to have children (and this was a factor in my having a termination), not to drink, not stay up late, not to work, all at the tender ages of 20-21, when my mind was full of future of children, and fun, and work. To be told it when the carer/patient dynamic was one of the things that destroyed a relationship, to be told it when I had gained so much weight and was puffy and glazed and had sat in baths while my hair fell out on Depakote and retched and shivered with Lithium toxicity and watched my sex life dwindle on antipsychotics; became the way a, “mental patient” speaks, the way a, “mental patient” looks, in clothes too small because cloth can not keep up with quetiapine, and ever shaking hands. Humiliating letters sent to my family to explain my diagnosis. Care plans, there forever.  Applying for benefits, attending soul crushing medicals. All for that.

I left feeling shocked. And BPD was fine. It was the, “Self diagnosis” thing that really killed me. It was the feeling of judgement, of dismissal and also of profound misunderstanding. I had been diagnosed with bipolar disorder while in a psychiatric hospital.  I did not do that to myself.

I felt feeling like a fraud.  Especially as my blog and my writing had gathered a little following and I had accidentally made myself a bit of a spokesperson for bipolar disorder.  People asked my advice, people listened to me.  I had never meant for any of it to happen but found value and meaning it.  Some people said I was a professional victim, but I have never and still do not feel like a victim.   I was embarrassed.  I was ashamed.  Not of the diagnosis itself (though I was a bit ashamed) but that I had so voraciously championed having bipolar disorder. Like a tit.

It was no accident that I went from writing here constantly and getting to 1 million hits and then stopped writing and hid. Although the diagnosis changed nothing about who I was, I had, and we all do to an extent, internalise it. I felt, simply, that I was a charlatan and had no right speaking up about bipolar disorder.  And to an extent, I still feel that way.

I felt ashamed that I had spent most of the time of being treated for bipolar disorder in a relationship in which he had to counsel and care for me, and had used it to understand my experiences.  It is still a kind of shame that I carry.

Most of all I was ashamed it mattered at all. Something that meant nothing years ago now did.

When I visited my GP, they spoke to me like dirt.  They asked me if I had been self harming (I hadn’t in quite some time) and made me prove it by pulling up my sleeves, which was traumatic. Nothing I said had credibility, and I wasn’t allowed more than weekly prescriptions in cased I overdosed, except that I had only done so once since 17 year old experimentation, and even that was written up in hospital (I later found) as, “because she had a fight with her boyfriend” which absolutely untrue.  So I didn’t go to that GP anymore.

Since I didn’t need my medication (it was Seroquel, one I did take faithfully for a year or so, which I still do, though I’m trying to get off it), I came off it.  I became quite unwell, if you can call it that, because it was largely fun.  I stopped sleeping, I became fixated with selling my flat (that I didn’t own) and moving to Paris and in pursuit of sleep took a holiday, instead walking up and down the beaches at dawn. I went to social worker appointments with a tiny dress, no pants and my period, spinning around on disability bars in reception, upside down, revealing myself, laughing, have a lot of sex and talking a lot. And it was good.

She urged me to take my medication again, and I did, patchily, and the sleep did help somewhat, but not entirely. It curbed some of it, but then it changed.  By the end of the summer I was roaming the streets with wine bottles, restless, and became quite paranoid. My good mood faded, replaced by rage. I would smash my head against the wall and roar, kick doors and throw things out the window.  I started hearing voices talking and I kept having to go and check the hall to see who was there, standing, calling, never to be answered.  I paid for a downloaded software to analyse where my emails were coming from because I didn’t believe they were coming from my friends, that they were lying and replaced.

It all sounds severe, but I started taking antipsychotics again and then crashed into a bad depression.  So that was fun. I actually called my social worker, something I had never done before, and she told me to come in where I sobbed, something else I had never done before.  I felt terrified, despite having been through that before, I didn’t expect it, and it was terrifying. I had a choice between admission and crisis team, so chose crisis team. In the meantime, the massive freefall into depression from months of being chirpy, active and talkative, then a bit mental, tore a hole in my relationship as he struggled to understand what had gone on. It was as though I had been replaced by a different person.  I sat miserably on my birthday, he having actually gone out to get me my favourite meal, some fizzy booze, and felt fucking suicidal. It was awful.

Knowing my now-husband did not understand and was struggling, my social worker had a meeting with both of us and explained to him…bipolar disorder.

So, I was prescribed a short term of antidepressants, and it helped.  Within 2 months, I was much better.  I had to go and see a GP- it was a different one this time- though I can’t remember why, I think it was to explain I didn’t need a new prescription.

“But you must keep taking your medication”.

“Why?  I don’t need it.  I have borderline personality disorder”.

“No, you have bipolar disorder, it’s very important you take your medication”.  And there it was, on the frigging screen. And still is, apparently, and I have been treated as such by psychiatrists and GPs. Either it was changed back, or it was the covert, “bipolar, but we really mean BPD” thing, which they often do.

Ever since, I have been wary of doctors.  I have been treated with kindness- my first appointment with a GP here whom I sadly never saw again bought tears to my eyes with kindness.  I was doing fine, as I mostly have been save for recently, and she said it was good I understand my “triggers”, my, “red flags”, that they were always there for me and I could call anytime.  It was comforting.

The older I have become, the more I think that bipolar disorder, or at least mood disorder, is correct.  I fundamentally misunderstood bipolar disorder myself when I was younger.  I said I had ultra-rapid cycling.  I had, in fact, never been diagnosed with this (I have been diagnosed with rapid-cycling bipolar, however). I diagnosed myself *shakes fist at psychiatrist* because I misunderstood the nature of bipolar disorder. That was because, to me, when I was diagnosed and over-identifying and looking for a reason, every mood was an, “episode”.  I’d have a night of drinking and being loud and spending too much and think, “Ooh! I was hypomanic!”  But I wasn’t (I was 23).  And I would excuse shitty behaviours with the same excuse, and I shouldn’t have.  If it lasted a day or less, it was emotions, and it was emotional instability.  Not moods.  Mood is the overriding thing and while someone can have ultra rapid cycling, I think it is rare. At the time I was pissed by the, “unstable sense of self” thing because I have been quite the same person forever, and was irritated that my dyeing my hair was, “unstable” when I’ve been doing it since I was 13, and it’s largely because I don’t really like/can’t afford clothes so it’s a nice way to freshen my look. But in retrospect, I did have a sense that I was, “evil” or, “good”. Not really anyone else, but me.  When I was much younger, I was also a total liar.  I was trying to big myself up, to be more interesting than I was. I also told bad lies to cover worse truths.

Now I am the opposite- I am completely honest with people and with myself.  (Some of my, “lying” took the form of psychosis when I was 16). I wasn’t great with being left alone, but I am now.  I am quite settled in who I am, I like being alone, I feel incredibly secure in my marriage and so on and so forth. But at one point, some of it was true. And realising that was actually very helpful as it meant I stopped and checked myself. I did sometimes react super-quick to anything, whereas these days, I’m quite mindful and moderate, and that was a wonderful thing in my life, even though it means I have also become quite boring. I wondered at the time, “Was my reaction to this diagnosis because bipolar had become assimilated into my identity?”- a self awareness I was not credited with, but one I think was true.  And it meant I began to step back from the importance of bipolar as a diagnosis.

Part of me was also grateful for the borderline diagnosis, as, when I had been told about it, I was told I had also recovered from it.  When I actually sat down and thought about it, my reasoning was, “Okay, so, if I’ve recovered from this, I don’t have a shitty, life long illness.  This is GOOD news”. And once I stopped fixating, things got easier.

But. On the background of that instability were moods. The instability stopped, for the most part, during proper mood swings. The moods are different.  Emotions swung from despair to anger and back again, but my moods swung from depression and despair to normal to elation and irritability and lasted a much longer time. Affected everything. From awakefulness to neverwaking. Were not who I was.

So it was all complicated by this instability that existed within me, and my general personality, which is to be analytical in the first place, and a bit of hyper vigilant.  When I look back, it is clearer to me now. The very long period I have had of being high functioning, groovy, mostly stable (save for normal stresses) without a whiff of BPD nor bipolar disorder beyond the medication effects and my general social awkwardness, makes it make more sense to me.  My moods, in the absence of the instability and other youthful behaviours and coping mechanisms, have become more sharply polarised and more noticeable as being, “different” from the way I normally am.  When I think back to my late teens, I was unstable, but I was also the person who used to infiltrate classrooms and talk and talk, until the break ended, constantly to whoever listened and stayed awake, laughing, breaking things gleefully, half my boobs out, indiscrete then believing I was a famous comedian. Before that was a depression that meant I missed most of my GCSE years. That period got me kicked out of college for being bizarre and hyperactive.  I forget that sometimes, why I am a 27 year old student, and am sad for it.

But overriding it all confusingly was emotional instability.  It was the start.  And I have found it difficult and confusing to separate myself, and had hoped that when that went away, everything else would, and it didn’t.

But that diagnosis before has made me so reluctant to get help when I need it, for fear of being dismissed.  And that is not a problem with me, but in the way personality disorders are treated and it pisses me off.  I almost want to say, “Yes, it’s not bipolar, it’s a personality disorder, so go on, treat me with the kindness that you just did”.

Recently, I have been depressed and it came as a shock.  I get the, “typical” bipolar depression of sleeping too much, eating too much, slow speech, slow thoughts,  guilt, feeling better in the evening, episodes being relatively short, etc.

At the moment, for the past 11 days, I’ve on Lamictal (as well as Seroquel). I am supposed to titrate up to 200mg, but I was so desperate to feel better, I thought, “Fuck it, I’ll start at 200mg”.  Which worked.  I am less depressed, but I think a lot of that also has to do with not working shifts, getting regular sleep and generally being able to take care of myself in a way I wasn’t able to while being a student mental health nurse.  And that gives me a lot to think about, that I may really have to deeply consider that I might have limitations I need to accept.  At the moment I am drowning under stress due to my habit of consistently taking too much on (moving house etc), still on a bit of a knife edge and feeling weird, and I know it’s not the time for big decisions.  This may not be recovery, this may be the effects of a high dose of a medication I have newly put into my body and on a dose I shouldn’t have.  This feeling better is fragile.

It has worked and been very activating (for a few days counteracting Seroquel to the point in which I could not sleep, at all, which felt weird after months of barely being able to get out of bed and crying myself to sleep) but I am now going to titrate properly as it seemed to be having a bad effect cognitively- yesterday I kept falling over, mixing up words and generally being dumb as fuck.  Today, I feel somewhat better, although I am so paranoid about THE RASH that I freaked my husband out so much he didn’t want to go to work yesterday.

But I still go, “Why am I taking this?” and feeling a flash of anger that I was put on medications so young for an illness I may not have, but probably do.  I wonder what the hell they did to my brain and if I should chuck them all away. I also feel flashes of anger that my language was taken from me.  Since I was 20 I have been talked to and speaking in terms of medical things; hypomania, depression, hypersomnia, etc. I no longer have the language to describe succinctly- this is why these kind of posts exist. Emotions and moods stripped to diagnostic criteria.  And once you begin to think that way, it’s hard to stop. Especially in my profession too.  One of the reasons I’m thinking of dropping out and doing psychology; I know there is a language, but to me, it is a more humane one.

And it has also given me suspicion of the medical model, which has come partly from age and education, and being more mature.  I was quite dogmatic at the beginning, and now I have a better understanding of my own experiences and how they contribute to who I am. I was keen to blame everything on a fabled chemical imbalance, while trying to minimise the trauma I had experienced, something I still do.  A friend of mine called me, “Rubberband Girl” due to the fact I could snap back from stuff which would knock people out for good.  But it took its toll, I just never really liked to admit to it.  I have been through a crapload of trauma and difficulty, and instead of feeling proud of surviving it, I pretended it didn’t matter. (You will not be surprised to learn- it did. And does).  I just suppressed everything and, in a way, hid behind the bipolar label.

I am more in touch with that now.  Recently, with moving, my husband says I get, “itchy feet” and finds it ridiculous that I enjoy looking up domestic things like curtains, that I pore over them, find them important.  I get itchy feet because I am used to being moved around.  This is the first time in my life it has been my choice.  I enjoy domestic things because for so long I was incapable of them.  I get a lot of pride in being responsible, paying bills, caring for myself.  I had a bit of an emotional storm during the wedding planning and the weeks before, when my past just seemed to hit me. I cried and shouted and raged, and it was what I had needed to do for a long time.  I am very self obsessed, I know this.  It was a self obsession I had to cultivate to keep my emotions in check, and, later on, my moods.  Psychiatry teaches you to be self-obsesssed while at the same time condemning you for it.  It tells you to be aware of yourself while at the same time telling you to stop thinking so much.  (My mum, when I was younger, used to say of course I was mad, I was a genius.  I wish she still thought that).

But there is also the little, “Your mum is mad and probably has manic depression, you grew up with her depressions and psychosis and you grew up with her cleaning the house at 5am, screaming, hyperspending and consistently getting us into debt and moving us around, your dad was an alcoholic, you probably inherited this, too” voice inside me. But it would say the same thing if I had borderline personality disorder.

I know it doesn’t matter, to me, in my heart.  I’m still me. My own sense of self does not rely on a diagnosis and, if anyone, the experience made me realise how fluid they are, how okay I actually was. The diagnosis helped me to be more honest with myself, and honestly, at that time, I was pretty okay.

But it does matter in some circles. I’ve been told constantly, “labels aren’t important”. But they are, and I found that when I had those two GPs.  I will find it when I register with my new one when I move, and get right in there with an appointment to discuss some physical stuff before they’ve had a chance to see my records and before they judge me based upon them.

It also matters in the sense that I have never quite shaken that idea that I have no right to talk about bipolar disorder.  At the time of the change of diagnosis, I saw some blogs which expressed their surprise.  Some people used the phrase, “bipolar poster girl” and it made me cringe.  I had never intended for that to happen. I never intended to be a poster for anything, and I don’t think everyone’s experiences are so similar that anyone can be.

There are better blogs out there now, I have mostly been fine for years, and I have faded into relative obscurity as a blogger.  But because this blog is still here five years later, I sometimes get approached asking me to speak upon it, and I usually refuse. When they ask me about my experiences of living with bipolar disorder, I say I don’t want to use that phrase- not just to avoid labelling myself (I was, “bipolar writer” to people, which annoyed me, which will ever shall be, but I don’t blame them, because- well, I write this blog) but out of shame that if I say it publicly, someone is going to “out” me.

And regretful.  I took a lot of joy and meaning from what I used to do. I very strongly identify with the experiences of people who have bipolar disorder.  Nowadays, my interest has become academic and I love mental health. Whatever happens, mental health (implicitly linked to me with social justice, human rights) is the area I want to work in, in whichever capacity I can be helpful.

At the same time, I have to hide my own mental health problems working in, “the system” and am in the double bind of wanting to say nothing and wanting to shout it at the same time because I am sick of hiding that I am drowsy due to antipsychotics and that I really honest to god cannot do late-earlies and night shifts because I cannot mentally cope with not having a regular sleeping pattern, which keeps me sane. I am sick of hiding the fact that my concentration and energy wax and wane, that yes, I did self harm, and rather badly for years, but I don’t have the plague, so please, let me pull up my sleeves without you staring at my arms because I am hot and itching under this.  I am sick of hiding that a lot of my sympathy and compassion comes from the fact I was a service user for such a long time, and when I hear shit chatted I want to butt in with the truth that, “us and them” is in fact “us”.

I want to start speaking out again.  I want to start writing again.

But I still can’t say I have bipolar disorder.

Do doctors dismiss your physical health problems as mental health ones?

I’ve been having physical health problems for a long time, namely, weakness in my limbs (my left arm in particular), burning feelings in my hands, numbness, blurry vision which means I zone out while trying to focus my eyes, tremor (beyond normal essential tremor) and being a Clumsy Fucker Who Falls Over A Lot.  I should probably see a doctor about this, but I won’t.

The same way I didn’t see a doctor when I was passing blood clots through my arse (oh yes). And when I had an anal fissure so severe I couldn’t sit down without pain.  I can tell the world these things, but I can’t tell a doctor.

When I mentioned rapid weight gain to doctors, I got two responses:

1) You are eating too much.  Stop eating too much.  You must be binge eating (I wasn’t).

2) It’s your medication.  Tough shit. (But when *I* have said that, I’ve gotten response number 1).

Whenever I have attempted to broach a physical health problem with a doctor, it has always been dismissed as, “all in my head”.  As part of my mental illness.  As “anxiety”, or, “paranoia”.

This is despite the fact that I am taking medication that comes with health risks, namely, diabetes (which I don’t know if I have, but I do have PCOS), hypotension and tachycardia (which I do know I have). It’s despite the fact that the illness makes me predisposed to some health problems (as a small example, when I am ill, my body is under stress, and I get physically ill, such as the last time I had shingles).   If anything, doctors should be more alert to my physical health, rather than less.

It’s also despite the fact that, save for my recent mood, I have been stable for two years. The only way they would know I have a mental health problem is by looking at my notes.  And they do, instead of looking at the person in front of them.

So I don’t bother anymore.  I feel that when I go to see a doctor, I am just a disembodied brain.

People with mental illnesses die some twenty years younger than people without.  How much of that is because we’re too afraid to see a doctor, knowing it will be dismissed as all in our heads? Or being conditioned not to care, because doctors don’t?

Have your physical problems been dismissed as mental ones?  Or the other way around?  Do you avoid doctors, too?

Edit: Ooh, Rethink are launching a campaign on this very issue over here: Physical Health Charter

Auditory hallucinations: an audio representation

On another note, stick your headphones on and listen to this:

 

For any voice-hearers out there, how did you find the video?  And do you ever have positive experiences of your voices?

The Neverending Story

Hello! I’ve been privating a lot of posts lately, many apologies.  I will make this brief.

Firstly, thank you for the comments on the post I recently made private.  Love is very appreciated.

In summary, this is what has happened:

Relapse (if you could call it that, which I guess you could) into depression. I haven’t had a bad episode of depression since this time of year 2010 when it followed 3 months of hypomania, which, as autumn follows spring and rather literally so as that it when my moods hit the skids and gave way into one of the worst episodes I have ever had.  It was mercifully brief; antidepressants lifted it, then I was taken off them for the usual reasons (mood being like a sliding scale, and antidepressants going up, up, up, so you stop at the reasonable point).

I haven’t gotten that far yet.  As in, I haven’t even been able to see a GP to get antidepressants or anything else.  Then was different, I was still under CMHT care so the crisis team were called out by my social worker and they dealt with me.

This time around, I have none of that support.  I can’t get an emergency appointment (you must ring or show up at 8am- it’s either engaged or a huge queue and invariably, the appointments are gone) so I am waiting until the 29th.  I could self-refer to the local CMHT but they just said see your GP and by the way, take your medication.  Which I would have been doing had my GP taken heed of the psychiatrist’s letter and prescribed it.  I followed it up, but I had also felt okay through the summer so didn’t push them further. I felt I was managing anyway.  I tried to call the crisis team last week (after psyching myself up for some time) and they hung up.  I don’t think the nurse could hear me, she shouted, “HELLO HELLO” then hung up. I don’t think it was anyone’s fault but the click of the receiver was the last thing I needed to hear. But I am glad because I am not sure I want that kind of support anyway- even if it’s available. I need my space and time, and not intrusive and questions.  I know what is wrong.  I am trying to find my way through.

It had begun in September and become intolerable this month in which I have been filthy, unwashed, gained 20lbs, wanted to sleep forever and been finding it hard to even speak.  With the odd okay days (and evenings, when I sometimes feel better) thrown in, just to annoy me, just to make it seem like the awfulness was all in my head and all I needed to do was Change my Attitude. The same way when this hit I was shocked.  As if it had never happened before.  The aftermath of episodes brings the forgiving anaesthesia, the not-remembering, the not being able to recall the pain of despair.  Or not recalling the excesses of hypomania (in flashbacks, they come, with shame, shame, shame).  And then depression itself brings the same anaesthesia, of dulling the happiness and warmness of memory.  A friend asked the question the other day, “When was the last time you laughed til it hurt?”  And I have?  Have I? I must have done.  But I can’t remember.  Even the joy of my wedding day, less than 3 months ago, feels as though it never happened.  An email from a colleague who I met on placement telling me I should be on the stage instead.  That was me?  That capable, bouncy, happy person?  8 months ago? How?  And now.

I stopped wearing seatbelts. Cried myself to sleep in despair at how I was ruining my husband’s life, how I was ruining everything.  Spent days researching where to get medical grade nitrous oxide for the big deep sleep.

I had been on placement full time while depressed and it became increasingly clear I could not cope. I finally saw my tutor (also a mental health nurse) and asked for help.  I felt shaky and sick on the way there.  I felt like a failure.  She said she could immediately see I was unwell (seeing is believing, not just the dull dead face but the stress induced face-herpes and bloatedness from weight gain).  That I am not the girl she knows right now (it is true, and it is agony to hear those words).

So now I am on sick leave.

My relief is indescribable because as much as I get the, “Well, if you’re not taking your mood stabiliser of course you got ill” schick I got from the CMHT, it is also, “Well, you are working shifts which is destroying your incredibly necessary sleeping pattern, and you’ve had a massive life change in getting married (and HA! this depression will begin to destroy your marriage before it has even had time to root, enjoy that), you have intense pressure upon you, you are financially fucked due to studenting and not being able to work part time too (but use every single penny to move from the place were you are being stolen from and bombarded with religious shit day and night) and you are in an emotionally draining environment…So of course you got sick”.

I need time and space and sleep.

It’s the same swooping mood crash as always, the same out of nowhere crash.  Maybe something fiddly in the brain, bipolarity, par for the course. But I have limits.  I do. I could work full time and study part time and I managed beautifully.  It was stressful but I came home, went to sleep, woke up, had some sort of routine. Not bed at 11pm then up again at 4. Then bed at 12pm, up at 10am.

Remember when I started this blog, back when I was just diagnosed, all 20 years old and full of it, and the strongest believer in the medical model, absolutely ear-closed to the idea that it could be anything BUT this thing in my head (the spiky sea urchin, christened then and ever was, will be) which could be vanquished by Lithiums and antipsychotics and and Effexors (the last one, a particularly particular disaster). Now I can’t believe I ever thought that way.  It was part of me then, but one I thought I could kill.  I don’t believe that now.  It’s a part I have to live with, forever. The medication does help.  It does.  But there is no magic pill.

How things change.

Accepting that means accepting, really accepting, that this could happen again. Whether it’s a character flaw, illness, or both, it could happen again. That thought is intolerable.  The unhopeful me does not want to accept it.  Best to stop it now, here, and never live through it again.

But I won’t do that.

I’m seeing the doctor on the 29th, I am moving, I am going back on the 7th, I am going to try and be more open with my husband and not feeling like an abject failure for this, try to be more open in accepting help from friends, who have been wonderful in offering it.  To find things that interest me (writing, radio, if anyone wants anything, even though I can write for about 10 minutes a month these days) and use it, little projects, to occupy myself, to keep some semblance of a purpose.  To make myself get out of bed when all I want to do is sleep. And that is what I am doing. It is what I have to do.

The old posts

I’ve been getting more requests than usual to restore the old blog posts. I privated most of the archives here as I was moving sites and because I was getting hurtfully trolled and didn’t want to give ammo.

I will restore the archives when I have the energy, and in the meantime, I’ve put the Insane Guides to Mental Illness back up.

X

There’s a black dog on my shoulder again

Hi chaps.

I’m in an awful place right now and I deleted a post at the end of September saying as much, so this one might get deleted too.  I always delete posts that reference anything negative these days, for a couple of reasons.  One being that, because this blog got all popular, because it followed (unintentiionally) an “arc” from, “Mental” to, “Ooh less mental” I got pinned with the, “Recovery Superstar” thing. When I fall sort of that, I feel awful, it is another failure heaped upon my life of failures.

Another being that I am worried about backlash, another about professional bodies getting me done for it, another shame, another being that I am afraid of being Googled by potential employers because, and ha! Paid, non-shift work might actually help save me a bit now.  I think so fondly back to early last year when I had a full time job (working regular shifts) and did part time study and I was the happiest and most stable I had ever been.  I managed, after my initial first month in paid employment in four years wobble, and I managed so well I got a bottle of champagne and an, “I’ve been dreading this” when I said I was leaving to go to uni, and a distinction in my course.  I take some comfort from that, a lot, in fact. My legs were more wobbly and new then than they are now and I still walked.

Stress, intense stress, and shift work is absolutely screwing with my head.  I can’t get regular sleep, I can’t take regular medication (I also can’t take regular medication because my GP surgery, and I hope they are Googled and someone finds this, THE DULWICH MEDICAL CENTRE, are absolutely shambolic and have still not actioned the psychiatrist’s medication changes of upping Lamictal to 200mg, and have left me without a prescription 4 times in a row), I have no balance in my life whatsoever and I never see my husband, and I am earning nothing.  I feel like a failure, I bring nothing to my house but misery and we are heading for financial ruin.  The feeling of contributing nothing to our household weighs on me, the feeling of our plans (we had them, kids, love, time) being on hold because of me, even more so, and even more so when I can’t see a way I can fulfil any of those plans.  And I can’t do a part time job on this course. And I seemingly can’t get any help or support. We’re living somewhere we hate.  This may sound stupid but I have been rotating the same two dresses and one pair of trousers for 3 weeks because all my clothes were stolen from our line.  At first, I thought I lost them. Then I washed all my best stuff (dresses, knickers, cardigans, which I have to wear) to start placement and they were all stolen, everything. I can’t afford to replace them.  And because I’ve gained 20lbs in the past 2 months, I wouldn’t be able to wear them anyway.  Our neighbours blast religious music constantly so we can’t sleep in our bedroom and sleep in the tiny spare room, and I live in the kitchen because the living room is often unusuable due to noise. I have no time or inclination to write, my thoughts are slow and dull, I have no inclination to see anyone or do anything, to move,  I feel as though I am fading away. What happened to that passionate talented person I used to be?  I am ghost.  I walk around the flat like a ghost, I walk through my husband, through life, carrying nothing but guilt and failure and self hatred and wanting to scream like an adolescent, “I HATE MY LIFE” and that feels like a stupid indulgence too. As does blithely saying, “I need a routine, I need money” when for years I tricked and lived as someone without both and thought it was so bohemian and not killing and I hate the fact that, “routine” helps me, as does some sort of creativity, some sort of expression and identifying which I feel I have completely lost (that part is not surprising)  I like evenings, I am better in the evenings.

I am partly depressed because this is what tends to happen to me at this time of year. I have been bitchslapped viciously by depression around September almost every year for… a long time. And I know it doesn’t last.  I know I spend months hating myself, pissing into glasses because I can’t move, eating everything in sight, wanting to sleep constantly, having no energy and having my husband try to cheer me up with jokes like, “Welcome to Seaneen’s chat show, in which she stares into space and doesn’t say a word for an hour”, which did make me smile.  This is my life.  This is what happens to me, and I don’t know why, and I don’t know what to do but make lists and try to carry on but I feel as though I am sinking. It has barely affected my work yet because I am very good at hiding it but inside I am screaming that I desperately need a break to sleep and to think and to recover. And it angers me because what I do now I have been so good at doing until lately. Even with the killing shifts I was managing and was a lot of the time great at it.

But it’s also partly stress, circumstances and situation and I have some hard thinking to do and I am also hard-thinking trying to.  i have worked my arse off for 2 years.  -Edited out stuff because I can’t be bothered-. I am also haunted by not mentioning my dad at my wedding.

I KNOW I am probably “not well” but all I hear in my head that this is stupid indulgence, that I am just not trying hard enough, that I am to blame, complete, drowning shame. I’m not a quitter, I am stupidly committed and hard working in a lot of ways. I know this too.

And even though I KNOW a lot I am still in furnace rage because I WAS FINE and was for a long time and although I KNOW things, because of diagnosis shit in the past few years I still DON’T KNOW or trust why this happens to me even though I almost tediously fall into the criteria for bipolar depression, even though I have been under a lot of stress (I have been under stress before and managed) when I was fine, so it feels like even more of a failure and a weakness than it already did.

So, that’s where I am.  Send love.

My Big Fat Irish Wedding: Part 1

It’s been a while! I deleted a post which said I had been down.  Multiple reasons, will go into those later.

This entry has been over a month in the writing, so if it is wildly varying in tone, you know why.  I should also mention: I am writing this largely for my own reference, as I haven’t got the best memory so have been writing this as I go.

Which is why this is part 1.

If we’re being all diarist: Weight gained since July: 15lbs (seriously.  I also made no attempt to do that whole losing weight before the wedding thing because I couldn’t be arsed, then ate a stone on honeymoon).  Alcohol: HOLY SHIT  MY LIVER etc.

Hello! I got married two weeks a month ago! So, for my Google searchingness- I am now Ms Seaneen Molloy-Vaughan. Which sounds rather posh. Never thought I’d be a double-barrelled (and I was never going to be a Mrs.) but I can’t give up Molloy, and Vaughan is too cool a surname to wave by shaking my head at. So there you go.

It was a fantastic day.

Classy. I’m the one in white.

But before I go into the fantasticness- a few gripes! I don’t want to end this post negatively, but I do want to briefly moan.

First of all, the niggles so I can rant somewhere and so I don’t end the post negatively (it was an overwhelmingly positive six weeks).

1) Many, many people gave me the same piece of advice, which was this. Find 10 minutes during the day to be together, just the two of you. We didn’t do this. The reception, especially the evening, is an absolute blur. In the nicest possible way. My beloveds at the ceremony and then more beloveds turning up all through the evening. Every time I said hello to one person, another lovely person was there to say hello to also! It was very overwhelming and it made me rather tearful. (It may also be blurry due to copious amounts of booze).

2) Stress does ruin it a little. It was the most stressful thing I have ever organised in my life and I wish I had sat back a bit and let it happen.  The week before I was a wreck.  I cried a lot- I cried because I missed my dad, who I didn’t even mention in my sort-of-speech.  I felt awful about this, until I remembered how much I had cried.  I think I just didn’t want to cry again.  Besides, I was wearing a locket with his photo on his wedding day- he was there.

I was also emotional meeting my friend David, who has been one of my best-internet-friends for 9 years.  Him being there (having come from Baltimore) added to the mad surrealness of it all.  I felt like tapping his face to see if it made the, “Thunk” sound a monitor does, which I definitely wouldn’t know, nope.

GET BACK ON FACEBOOK CHAT YOU WEIRDO

It also added to feeling of quite overwhelming privilege.  I cannot believe how many people stepped up to help, to be there.  I felt so much more honoured than someone who chainsmoked her way through her wedding appeared to be.

On the morning and the night before, I was incredibly stressed. The place was a mess when my big sister Michelle arrived, but she managed, in her magic way, to clean it in about half an hour.  Then everyone came and the quietness I had had that week vanished- my family were there (my mum and baby sister for the first time) and it was definitely happening, and it was real.  I felt very emotional saying goodbye to Robert as he went to stay with his family, and I felt emotional saying goodbye, in a way, to my own family.

They were devastated.

Face masks were on (they are not my family’s actual skin- their skin is green, as all Irish peoples’ skin is), and my mum- my MUM!- even had a cheeky drink.

Adrenaline kept me awake until 5am, but I did have to take medication or else I would have started to get the runny-nose-sneezing-itching withdrawal later in the day.  I could only be roused at 11am and, as my sisters were out faithfully sourcing me a, “Something blue”, we were very late to get started.  So my flat was a nest of screeching, stressed, snappy women (and my brother, who was on Facebook), half-high on hairspray. Not the relaxed, “Haha, let us pose for photos where I am drinking fizzy shit and looking excited and oh look, I’m being reflected in this grand mirror which coincidentally has a bunch of white roses in front of it, how lovely!” mornings you so often see on wedding websites. Because of shit taxi (3), I also exited the flat not in a cloud of  bridely serenity but screaming down the phone and scaring the neighbours.

I shouldn’t have been so stressed, as we got a lot of free help. A fantastic reader-now-friend Emma (of Fussy Tarts) made our wedding cake and loads of cupcakes. And look at it, it is just…amazing. And delicious.

“This was a triumph…”

My sister in law Kate made more cupcakes so everyone was well fed. My friend and Rethink companion Abigail did beautiful flowers for me and the bridesmaids (and the bouquet toss was skillfully executed by 4ft 11″ me not being able to throw it properly thus launching it into my friend’s face, then taking it back because it didn’t count and hey, THEY’RE MY BLOODY FLOWERS ALRIGHT) and Suzanne made the room and garden look beautiful with balloons, sparklers, bubbles, lights- it was gorgeous.

Everyone looking very happy here. I think we were delirious from hunger after the long wait for the ceremony.

Part of the stress was doing it on such a tiny budget. That beautiful room, and beautiful garden, with gorgeous food and (it nearly floored me, I felt so fancy) wee glasses of fizz on arrival all came to £600- for 50 people. So it can be done! If you don’t mind giving yourself a hernia in the process. (If you’re in London, it was at the Cambria in Loughborough Junction.  They were brilliant).
3) I was partly stressed due to the UTTERLY UNPROFESSIONAL Brixton Cars. Obviously, I couldn’t afford a car to take me there so I ordered an 8 seater taxi after another company let me down. I wish I had accepted their offer of 2 taxis and not rang this shower of bastards. They came 40 minutes late, by which time I had missed our wedding slot, and then got lost on the 5 minute journey (in two separate taxis as my superstar friend Sarah had been frantically ringing all the taxi places in the area so we actually got there). As a result, instead of relaxing before we left, I was screaming down the phone in complete panic. As another result, the timing of the day was an hour and a bit late. So we had people for the evening arriving during the speeches, and then our first dance (which was about the 20th by this point) much, much later in the evening, after the party had started, in front of loads of people and I was so awkward I just ate Robert’s face off. I had also forgotten most of us smoke and drink so everyone was in the (beautifully decorated, thanks to my friend Suzanne) garden and I had to call people up for the first dance, which is not what I wanted to happen! It felt a bit like calling the kids in from school. “Aw, MUM! Do we have to?” *puts out fag*

4) We went on honeymoon to Rome.  I now understand why people laze on beaches and drink coconut milk and suchwot on their honeymoons.  We were so tired we could barely move. It also rained heavily for most of the week, which, on arrival I was rather irritated by, but which turned out to be a blessing.  It was wonderfully cool, and there were lightning storms! I’ve never seen forked lightning and I kept waking up my sleeping husband (more on that later) by squealing.  I did take photos on my phone, which brings me to niggle 4 proper.  Don’t trust friendly Romans, because they will steal your phone.  On your 27th birthday.  All my wedding photos, texts, and photos of my bum (taken for medical purposes- really) gone. This WILL cause a massive fight with your beloved because you are a) pissed and b) pissed the fucking-fuck off.  We made up for it the next day, however.

Right, niggles over!

I have never been so nervous in my life.  And I’m a pretty nervous person.  I’m someone who turns around from nights meeting friends and fakes illness, or, even more ridiculously, fakes going out to people when what I did was sit in the house.  As soon as Robert left, I hit Twitter. And I try to do Twitter, without much success, but I was a demon that night.  I looked for any indication he might not show up.  This is social networking nerves.  Has he just tweeted, “#marriageisforknobends I’m going to France”? I didn’t really think he wouldn’t show up.  But I was aware of the huge enormity of him not doing so.  I read multiple, “Ditched at the altar” tales and reckoned with myself I’d still be pretty cool with the cats and Robert’s bollocks as earrings.  No harm done.

#fuckthisshit

I’ve always been close to my family.  I’ve lived in London for 10 years and I have never met anyone who understands my background.  The poverty, the penances, but moreso, the bond you have, through better or worse (I heard that one later). We are weird.  We are dysfunctional. But we love each other.  It was the first time I had ever had my mum in my house, and the bickering, the arguments, the jokes- made me keen and yearn for my childhood.  For a life I was leaving.  Willingly, very willingly to make my own family.  But I felt the pain acutely.  I wanted to talk of unicorns and shit and distract myself from the massive step I was taking.  But it was like Christmasses.  It was difficult not to revert to my childhood self, to be the adult, to be the person whose home it was.

I didn’t feel grown up.  We’re not grown ups.

Robert. Silly, tall, funny, bizarre, beautiful man, who was now going to stop being my fiance (he was adamant I used this word, I never got used to it, how would you in 8 months?) was going to be my husband.  In the months and weeks and years before I felt a kick a pride every time I saw this messy haired silly sod through a crowd, his Dulwich Hamlet scarf, even in hot weather, tucked up to his chin, his beautiful hands. So vivid and colourful and real.  He was mine.  And I was his. My first love.  And my last. (Which I had engraved into his wedding ring).

But to be someones’- really someones’- You don’t need a marriage certificate for it, of course.  But that is what we were doing.  I remember looking around the newly tidy (thanks Michelle and Orlaigh!) flat and thinking, “What would a wife do? Should I be different now? Apron? Duster? Stockings?” And deciding- not much and kicking my shoes onto the bedroom floor, hanging my tights around the heater, like I have always done (but cleaning plates as soon as I’ve used them: WHAT HAPPENED TO ME? WHY DON’T I LET THOSE WONDERFUL GREEN COLONIES GROW ANYMORE?)

I’ve already mentioned the morning. My family and my friend Sarah were with me and kept saying, “It won’t matter, really, as soon as you get there, this will all mean nothing”.  I told them, politely, to go fuck themselves.  Of course it would, I bet I’ve missed my fucking wedding!  Robert’s gone and married a fucking chair! He’s currently commenting on its sexy velvet upholstery while I’m standing in the middle of the council estate I live in bothering the fucking neighbours!” I got out of the (free) taxi, outside the register office and:

YES I LOOK LIKE AN EEJIT. But that was my actual expression when I saw everyone

Because my phone got stolen, I only have a photo of later.

People I loved, adored, all standing there.  Waiting for us, and our wedding. My mum in law, my sister in law, and Robert, not there, hiding, doing his groom thing.  All proud and tall- even Rhoda looked tall, even tiny Laurie who I often stand on my tiptoes when talking to- looked tall.

And nerves- but different nerves this time, not taxi nerves, not, “I look like shit nerves” (I did my own make up, but my lovely sister did my hair) but, “Holy shit, soon I will be getting FUCKING MARRIED” nerves kicked in. Delicious, fizzing, terrifying, hands numbing nerves. This. Is. It.

And then, dissolved, as they are, by life.  What the hell are we supposed to be doing?  I called our guests in about six times then exhorted them to stay outside.  Lots of photos in the register office room with my family and my family-to-be.  Thankful of the something to do. Feeling like my knees were going to go any second.

GORGEOUS SODS.

Occasionally Robert’s best man Nick came out of the room.  Every time my heart skipped a beat that he was going to blythely announce that Robert had crawled out the back window.

The registar came.  She was amazing.  “Do you have the music?” I demanded of her.  She reassured me that she had 20 years experience in this field.  “But the person who does the music just started today”.  From my rigor mortis face she laughed.  And then-

“How do you want to walk in?”

My bridesmaids first.  My sisters: Michelle, Paula, Orlaigh, and my sister in law, Kate.  Then me, on the arm of my little brother in the vestiges of, “Father of the Bride” (in my dad’s obvious, aching absence.  My brother asked if he should cut his dreads off. Silly man).

Everyone turned to look at me.  Smiling smiles that broke faces.  It was unearthly. It was like I was being welcomed into heaven.

And then I saw Robert.

Robert usually has incredibly messy hair.  He sprays it with coloured spray.  Barely washes it (likewise, I don’t wash mine often).  He looked so neat.  Like a boy at his holy communion.  Newly washed and scrubbed, clean and clean shaven.  It was odd, I don’t see him like that often.  But so lovely- the knowledge of how seriously he had taken it. Not that I doubted it. But I know him and his worrisomeness, and imagined him, in that second, worrying about his hair. And such a smile.  And warm brown eyes.  And beautiful-beautifulness, charming charming-ness, shyness. Proudness.

I can barely remember half the ceremony.  Just the, “ssh” of cameras and the registar saying stuff while I felt dizzy and unreal but so, so happy.

And our vows. Holding hands.  Awkward in front of the glare.  Meaning anything more than I had ever meant. As long as we both shall live.

Robert winced at, “the union between a man and a woman”.  Visibly so.  I was too cuckoo to notice.

My love. My darling.

Unfortunately, Robert’s wedding ring was a wee bit small.  Nothing a bit of Vaseline wouldn’t fix.

That’s his mum losing it in the background!

Then we were pronounced husband and wife.

You may kiss your bride!

To cheering, roaring applause, we married.

The rest to follow!

There’s a black dog on my shoulder again

I have ironically been very depressed lately.  A combination of the time of year (I always get depressed around this time), not being able to sort out a prescription (Lamictal) which would probably help this mood because the surgery I am is so bad, shit and disorganised that I cannot muster the energy to talk to them since they haven’t yet acted on the instructions of the psychiatrist for the prescription, and circumstances (exhaustion, conflict and stress playing a massive role).  I manage to be fine, but a brave face on sometimes but for the most part, I have been tearful, low and exhausted.  This is, as you’d imagine, putting a strain on a) my new marriage and b) university, which I can barely face right now, and I’m back on placement in 3 weeks, but of course have to.

I haven’t updated here as the shame of being a newlywed depressive has almost flattened me.  This is not how I should be feeling right now, and I am angry and resentful because of it.

Our wedding was wonderful, as was our party in Belfast last week, and I have a half-written post to finish.  I do want to finish it because I want to remember it all, but right now I feel flat and crap.  I will, though.

Anyway, that explains the radio silence. I’m sure I will cheer up.

See you soon.

I’m getting married today!

HOLY SHIT.

It’s 3.17am and it’s in 12 hours.  I need to wake up early.  I also need to take Seroquel or else I won’t sleep at all and will start scratching from withdrawal.  I hope I don’t sleepwalk through the day.  I hope I wake up and the nightmares I have about not making it (and of Julian Assange living in my dad’s bedroom and talking to my dog) don’t come to fruition.

I am about to have my (yearly) bath.

I have accidentally dyed my neck red.

My family are all in the bedroom and have spent the day gracefully dealing with me being a stressed arsehold and I am on my 25th cigarette.

But this time tomorrow, I will be married to the love of my life, in a lovely hotel room and probably pished as fuck.

ARGH.

But I want to say, now, when I am not pished, when I am nervous but not stressed….

THANK YOU!

for your support, encouragement in my recovery, loveliness, your stories, for reading and for sharing, for putting up with my wanky wedding posts (on here and on Facebook) and, through this blog, actual friendships (there are 48 people coming to our small wedding, which includes both of our families, and four of them are people I have met through this blog) and actual practical help when I have needed it, even when I haven’t asked for it.

I feel like I’m entering a new era.  A married era.  What will change? I have no idea, but I never thought I’d get far enough to find out.  To be happy and stable and comfortable enough to confidently accept love, to confidently give it.

But this is not the end.  I will continue living with this, probably for quite a long time, but I feel I can handle it.  And so does he, clearly.

Bloody hell.

Here we go!

Busy fortnight

3 days until my family arrive from Belfast and have to use a bucket to flush the toilet as it has now fecked itself.

4 days until we get married and I am a Ms (I’ve always been a Ms, I will be a Ms with an extra  surname, and a husband).  Tomorrow I’m meeting my friend David for the first time!  We have been online friends for 9 years and he’s coming from Baltimore for the wedding.  Hooray!

A room full of people we love and think are awesome. This is excellent.

6 days until we bugger off to Rome on our honeymoon!

8 days until I turn 27 in Rome!

14 days until I return to university for year 2 of my nursing degree.  (I passed year one with a first, which was incredibly difficult so I fully expect year 2 to kill me).

26 days until our party in Belfast with my Belfast people and my granny!

I am glad I have spent the summer asleep and watching shite TV.  I actually wanted to lose 3 stone, write a book and get off medication.  But it was so very neccessary after the physical and emotional exhaustion of being on placement.  But I did miss my 5am starts, oddly.  I don’t think I’ll have the same sentimental glow about them come this winter when I will still have 5am starts, but instead of bombing down the road in the bus into the sunrise, it will be groping in the dark for the alarm clock then exhorting it to go fuck itself.

A lot has changed in a year.

ARRRRRRGH! Excited!

Body dysmorphic disorder and, oh shit, a whole day of people taking your photo

The last time I wrote about BDD I got slammed for writing something so, “self regarding”.  Well, sadly for you, BDD is also a mental disorder. So suck it.

I was determined not to let my body image shit ruin my wedding. Not to diet. Not to fuss.  Not to fall back into an eating disorder.  I did on count 3 (largely because of count 1) , which I trying to get a stranglehold of. It is not something I want to discuss here- suffice to say, I am as fat as always, but with chipmunk cheeks added.  I confessed all to Robert, I have a friend who is contacting me every night to see how I am doing, and it is helping (I am still considering asking the CMHT for a therapy referral.  As the below illustrates, I’m sort of there, but I need a bit more help).

I know all brides (awful term) worry about what they will look like on their, “big day” (another awful term). I am not worried so much about what I will look like (shit, as always), but the actual exercise of people taking photos of me, looking at me, it being there forever, and having nothing to hide behind.  It is my worst fear. I can deal with some very carefully selected photos of myself but I still read my BBC Ouch columns on my phone with images disabled. In a way, it’s the thing that makes me miss hypo/mania the most.  “LOOK AT ME!” which, in my normal, non-manic life, I hate.  It was liberating, in a way, not to care.

I can handle being ugly in private.  It’s what I exist as, humdrum and ugly.  There you go, no harm done. Being ugly in public is what I needed therapy to deal with.  And in some ways, the therapy was successful.  I do accept now I have body dysmorphic disorder, which, although I had been diagnosed with, I had denied because I was, “that” ugly. What I have not intellectually nor otherwise accepted is that I am not, “that ugly”.  What I have accepted is that, for a long time, my behaviours surrounding that ugliness were disproportionate. Of course nobody is going to brick me in the street for being ugly (they will just call me a, “fat freak”, but hey, welcome to being a woman).  Of course my ugliness is not tied to my self-worth- I would be as worthy if I were beautiful.  That was my biggest victory and what helped me to, finally, accept love. Accept compliments, quietly and unquestionably, even if they have sadly little impact on my self perception.  Which is an incredible shame, because it is not just Robert who has treated me so beautifully.  I have always had partners and lived with men who were gentle, loving, complimentary and adoring and who did not put me down and treated me as an equal.  If I listened (how I wish I could listen to their real, real voices, and not the one in my head which is catcalling me, “your nose is too fat.  Your face is bloated.  Your nose nose nose nose nose, break your nose, get a new nose) I would have high self esteem.  I have grown so much in the past year, in so many ways.  Learned to listen, to accept criticism, learned to reflect more, learned to be more open, learned to be more healthy. To be aghast of the violence I used to direct towards myself, and, occasionally, others.

There is improvement- I don’t think, beyond my feelings about my appearance, I would meet the criteria for BDD anymore. Therapy was incredibly valuable in helping me to understand my anxious behaviours.  The smashed mirrors (in public places, bathrooms, that kind of thing, I would never allow one into my home then) and the thought processes leading to them.  That if you looked closely at anything (nose nose nose) you will find flaws.  I also used to see my face swell and utterly panic- I only recently understand that was a side effect of bulimia.  My face WAS swollen, and not delusionally, but also not naturally.  And it receded and ebbed and flowed. I don’t, for the most part, link my loveability to my appearance.  When in the past I feared to leave the house in case people laughed at me for what I looked like, and hated me for it.  That is an awful lot better. I don’t (often) look at myself in a mirror and want to die because of what I see, not being able to envisage a life in which I can live in this body.  I can leave the house now.  I don’t carry make up in my bag constantly, I don’t spend hours and hours applying it, rubbing it off in furious tears, then reapplying.  It takes 10 minutes, I’m out of there. Not satisfied, but so mindful, always mindful, of the terrible impact it had on my life for so long.

This, in a way, is the final frontier, the absolute last horror I can face in terms of living and somewhat recovering from body dysmorphic disorder.  It’s your wedding day.  You get photos taken of you, that’s what you do.  And it’s what I want- I want tons, hundreds, thousands of photos on the day as I have a terrible memory, and I don’t want to forget any of it.  I take a lot of photos myself so I remember.  I want to remember, I want to be remembered and have something to send to my granny, something to frame.

Part of me seethes, “How COULD you get married looking like this?!” in the same voice that used to scream, “How can you LIVE looking like this?”  And I try to ignore it, because I know it doesn’t really matter. I want to ignore it, I am going to do my best to ignore it.  And I am also doing all the things that make me feel nice- having my hair my “natural colour” (dyed bright red, my happiest colour), wearing something fitted, nice eyeliner.  I still have the socially-phobic me in there but IT IS MY WEDDING. I will deal with people. I will enjoy people.  I have no choice this time- I can’t turn on my heel and, “pretend” I went out when what I did was sit in a falafel place on my own, texting I had a great time and wasn’t at all too scared to go and speak to people.

It’s difficult to explain to Robert. He worries I won’t enjoy it, and this is partly why.  He does not understand the force of my feelings, which I get, because he thinks I am beautiful (and I believe he thinks it- how far I have come there!), so I wouldn’t want him to understand.  I have put on 2 stone since we met (happiness, recovering from an eating disorder, medication) and he said today I am lovelier than when we met, which is reassuring.  Hopefully the bloom of childbirth, ageing, ripening hips and EVEN BIGGER boobs will make me lovelier still to him.  I never worry what he thinks of my appearance, I cannot name the worry, or the who, I guess. It is me, I don’t want to look at photos and be frozen in this body and face when I still, doomedly, hold the belief, “It will change for the better.  One day, you will be beautiful”.

I hope happiness makes me, if not beautiful, then lovely.  Because I am very happy. I used to try and dissociate myself from my body back in the day, to say, “It does not matter what you look like, because you are you regardless”.  It made it easier to cope with living in it.  Now I try to be aware of it. “Yes, you are fat, but it is protecting you.  You have a funny nose, but it looks like your dad’s.  You would be so sad to look into a mirror and not recognise your father”. It works to an extent.

I am determined not to care. To pose and be happy.  To duckface with the best of them.  It is my wedding day, my one and (hopefully) only.  Mental illness has stolen so much from me.  Not this. This is mine.

1 week and 5 days to go. Wish me luck.

What Has Been Happening: Weddings, police officers and nothing

Hello!

It’s been a while, sorry for not updating!  Since I keep this blog mostly specific to mental health, I have very little to say. Well, a lot to say on the news, but find it too depressing to write about at the moment.

So, a quick update, then.

I continue to be fine, stable and happy. The only mental health related-ness is coming off Seroquel (trying again!) but this time I have gotten down to 25mg, hooray!  I’ve been titrating up Lamictal at the same time (200mg right now), and it seems to be helping. The last time I tried to come off Seroquel I became quite wobbly, so hopefully the Lamictal is helping that.

I’m off university at the moment in my first and last summer break.  I had lofty ideas of spending my time exploring the summer, writing, learning the guitar etc, but what I have actually done is smoke in my pants, watch crap, read Cracked a lot and almost chilled myself on the amount of cold beers I have sucked down.  And I’m not complaining- the past year has been intensely stressful and busy.  Coming off placement I was emotionally and physically exhausted. Shattering 5am starts most days, two 3000 essays to do at the same time and being in an intense environment, being evaluated by staff, being evaluated by patients, listening, listening, listening. I am enjoying the silence. This is a restorative nothingness, and in any case, I’m back in a month.

I’m getting married in 3 weeks, which I can’t quite believe. I had my hen night two weeks ago. I talked Robert into having a stag night, too.

The day started with me lying and waking up my brother and fella and saying we had to go to Peckham for groceries. My hen night (organised by my big sister) was starting with food in the flat, so this was plausible.

An hour beforehand, I sneaked outside with a tent to his waiting friend then went back in and feigned indifference about Peckham, making him get his shoes on. I told him to have a cup of tea and we’d head. No urgency.

We walked up the road, holding hands, with my little brother who had a camera in his pocket. Suddenly, from a white van, four men in balaclavas kick open the doors and run at us. “You’re coming with us!” they shouted at him and grabbed him by the legs. They gestured to my brother and said he was coming, too. So Robert was bundled into the back of the van- doors slam, they sped off.

I went home, thinking, “Ah, what larks!” After a half an hour or so, while I washing my hair, there was a knock at the door. It was the police. They had been around all the other flats already. They asked me if I had witnessed an, “incident”.

It turns out half of our estate rang the police.  10 different phone calls.  I had no idea why we were stupid enough not to anticipate this.

10 different police officers. One at the door who I had to take down and explain what had happened. A sargeant, a DCI, the kidnapping unit involved. A white van had been reported stolen, they put two and two together. Luckily, I’d taken a few photos on my phone so a) proved I had witnessed what was a stag night joke and b) had the registration.

They’d blasted God Save the Queen in his ears while gagged and blindfolded then got the coach to Bournemouth, so they could go camp on the beach. There was talk of getting the Bournemouth police involved at the other end but luckily, two phone calls later (one to Steve, who was the coordinated kidnapper, one to Robert, the, “victim”, as they called him) they believed me and relaxed. The whole road was cordoned off. The angry police officer talked about charging them with wasting police time- but they didn’t call the police. The sargent said worse things happen on a stag night and that she’d be expecting her invite in the post. All in all, I spent an hour, in front of half the flats on my estate, in a towel, explaining what happened.

Half an hour later, there was a knock at the door. And the DCI handed me this:

So, good start to the day! I’m not sure four men in balaclavas bundling someone into a van would have been forgiven in Belfast.

Hen night was proper girly stuff. My sister went mad overboard and made bags for people. Sashes, t-shirts with our names, cocktail glasses, banners on the door. I felt like a dick to start with (I had a tiara with a veil) but I got into it, especially when we all walked outside and the children who live on my estate who were playing in the park started clapping and shouting, “Happy wedding day!” (I corrected them). And next door’s child came and asked for balloons, which we gave her.

On the bus, people were shouting congratulations and well-wishing, and it felt lovely.  I hope it feels equally lovely when we pile on the 345 on my wedding day, since we can’t afford any transport but London buses. (I will be arriving resplendent in a taxi).

We went bowling, were we met my friend who had made up more bags with samples of stuff- perfumes, make up, sweets and booze (and fancy knickers for me). Then got pished, ate, did karaoke and danced, and had my mother in law to be getting me hammered on whiskey.

While we were doing this, my fiance was burning a 2ft tall papier mache effigy of a penis which his friend made him. Apparently it was to symbolise his commitment to me. The penis had crude drawings of naked women on it.

Anyway, this has made me realise the importance- whether internalised or societal, or both- of ritual. I now properly feel as though I’m getting married, it is really happening, and so does he. Giving notice today made it even more real.

Tomorrow I’m returning to the beach where Robert had his stag night and camping there.  After this weekend, he’s working solidly for a week.  The next week is the week before the wedding, which will be ridiculously busy. And the week, it’s the wedding, the honeymoon and then back to life.  Only, I’ll be a wife. How weird.