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?

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!

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*

*bump*

The last October snowfall in London was in 1934 so I celebrated with my camera, a cigarette, a can and a complete stranger

Which probably indicates something apocalyptic about climate change but I don’t care.

I’ve just had one of those lovely experiences that makes me grateful for both life and London.  I have a big smile on my face.

Firstly, I should say that thanks to your incredible generosity (see a previous post for what was going on), I paid my bills (two yesterday, two on Friday) and had enough left over to pay half (one half being Rob’s) of a second hand camera.  That felt a bit cheeky but it was £verylittlemoney.  I felt like I’d lost a limb when I lost my camera.  Well, a finger, maybe.  So thank you from the bottom of my granite pebble heart for helping me out. Things are settled and back on an even keel now.  My bills being sorted is such a load off my mind, I had really been panicking over it and eyeing up things to sell (my body, for example.  A packet of crisps and a some cigarettes, in all likelihood.  But I like crisps.  It’s a fair trade).  I was going to post that yesterday but wasn’t sure how to crowbar it in between zombies and Kerry Katona. Thank you too for understanding how uncomfortable it was for me to make that post and being very tactful. And everyone seems to love Dead Set, even amongst my contrary circle of friends I have yet to see a bad word about it.

Secondly, sorry for yet another off topic post.  After an extremely traumatic fortnight, I’ve really needed a break from the intensely analytical mentalist posts.   I have a lot to talk about on Thursday (The Reckoning, oh dear), so it’ll be back to business as usual.  I’m sure that you’ve, er, missed the posts about mental illness?  It must be dull…not reading about it?  Really, what’s the etiquette for mental health blogs?  When people feel better and spend their days flicking through books rather than streaking down the street in their flimsy underwear, do they apologise for it?  It’s a tricky medium.

It’s bitter winter here now, and I’d had my thick drapes shut all day, warming my hands on cigarettes and strong cups of tea.  Then Rob called, telling me it was snowing.  I opened my curtains, and there it was, fat flakes storming to the ground.  When it snows in London, due to the heat of pollution, it’s just farty, feathery little scraps that dissolve as soon as they touch solids.  But this was proper snow.

I threw my coat on, without any socks, pulled my hood up and tore downstairs with my camera swinging around my neck.  I live on the Holloway Road, possibly one of the least picturesque locations in London, but it was beautiful, the snow was swirling around the street lights and I must have looked slightly odd standing in the street, laughing my head off, with my arms outstretched at 10.30pm.  The insurance with actually being mad is that you never mind if someone stares at you, you’re used to it. People were shuffling by clutching umbrellas, and then a man wrapped in a tartan scarf walked past, spotted me and gave this great, big beaming smile, and we looked at each other and laughed with pleasure.  I love the fact that snow brings the child out in some people.  (I know that at twenty three I am technically a foetus.  I find new nubs of flesh every day). Some people sneer at it, but fuck ’em.

While I was snapping and giggling, a blonde girl appeared and commented on the brilliance of the rare London snow.  I’d never seen or met her before, but it turns out that she’s my neighbour and lives next door to me.  We chatted for a minute, introduced ourselves and then made the snap decision that we should go to Highbury Park.

We were both fagless, since we’d just leapt out of our flats in the spur of the moment (and the streets were pretty dead), so she ran indoors and grabbed some cigarettes, then reappeared with gloves for me (my hands looked like cuts of meat) and some cans of booze.  Then off we went, smoking our fags and swigging our beer, looking like tramps.

It was still snowing by the time we got there, and looked beautiful.  Highbury Park runs incognito behind the main road into Finsbury Park.  It’s lined with expensive looking houses that belong in a Richard Curtis film and black Victorian streetlamps.  The snow had settled on the grass and cars and a few footprints muddied the white asphalt.  Our hands were frozen as we clutched our beers but only one other person was around and we were alone the haze, and the park was untouched.  Only the heads of the blades of grass peeked out The snow had started to lessen and sleet, so we would be the only people to see it like this, carpetted and lovely.

I wrote my name on a car windscreen (childhood habits haven’t left me; I also valiantly attempted a three line cock) expecting the alarm to go off and for us to end up sprinting and sliding home.  It was so quiet, and everyone had their curtains shut.

We were freezing so had to turn back onto the main road with cars slooshing by.  It was a drizzle by then, with people hurrying home.  We had a victory cigarette, wiping wet hair out of our eyes.  By the time we reached our doors, it has almost stopped.  We said cheerio and hurried inside.

I’m glad I ran outside and played in the snow before it disappeared. It’ll be gone in an hour, and it might not snow again all winter.  And what a lovely way to meet your neighbours.  It’s made me really happy, even though I’m freezing and I’m using the cats as slippers.

Here’s some blurry, excitable, shaking hand photos.

Photobucket - Video and Image Hosting

Photobucket - Video and Image Hosting

Photobucket - Video and Image Hosting

Continue reading

My Review of The A-Z Guide To Good Mental Health: You Don’t Have to Be Famous to Have Manic Depression

…and other such delights are available in the new issues of “One in Four” magazine. 

One in Four fights stigma and exclusion by challenging negative images of people with mental health difficulty, dispelling myths and increasing understanding.

Go and look, it’s the Bran Flakes of publishing, full of good stuff!  

For those who cannot be bothered to click the above link (and shame on you), this is what I wrote (the edited version).  

Oh, what I didn’t mention is that it had a foreword by Stephen Fry.  So it has a forward by Stephen Fry.

When I was first diagnosed with manic depression, also known as bipolar disorder, my well-meaning psychiatrist adjusted his geography teacher cuffs and penned an extensive reading list that he hoped would help educate me about my condition. I found myself lost in Waterstones, too nervous to ask the shop assistant which book would be most helpful. I skimmed the titles, sidestepping at least five Madnesses ‘, a few Angels and, worst of all, How to Love Someone With Bipolar Disorder , as though people like me were an exotic subspecies who required our cages cleaning out every two days.   There was also the bafflingly titled How to Survive Bipolar Disorder: What You and Your Family Need To Know , a book crying out for a Protect and Survive style television marketing campaign.

Continue reading

Libido

Cocks and boobs immortalised in tiny soaps.  I have no idea where I got these from.

It’s really embarrassing to admit to this, but…

Continue reading

The Motherland

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

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

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

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

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

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

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

Continue reading

Inside the Iron Maiden

I don’t like self pity.  Least of all my own.

“Bravery”, in terms of illness, is will. If you don’t challenge your own negative thoughts, you lose.  The trouble with depression is that you tend to keep the thoughts to yourself.  Positive thoughts don’t squeak through.  There is no challenge.  You swallow up whatever your mind is serving you.  You have no allies.

It’s a shock, for a second, in the room, with its large windows spilling light onto a bricked up garden incarcerating spindly, infant trees anorexic from lack of sun.   My head is almost between my knees I am so slumped.  I examine the detail of my shoes, count the hairs on my hands, anything to pull my thoughts elsewhere.  The chair is comfortable, the fabric is blue with scratches upon the arms.  And then there is a human voice slicing through the inhuman one-

“It controls you, but it’s not all of who you are.  You are more than this.”

faraway-

“The voice is wrong”.

Quietness, for a long time.

“I know that depression is difficult and you feel as though you’re a burden on other people.  But that’s not why they stay around…”

It feels almost like a dream-

“It’s because of who you are, all the good things about you, because they love you”-

My head rises, a millimetre.  I feel like I want to cry.

“There are no good things about me.  If you could see their faces.  How disappointed they look. They are so tired of me, and I am tired too.  My family, my friends, Rob.  They don’t know what to do.  I have put them through so much.  I hate myself.  I make their lives worse.  So what is the point? I don’t want to be this way anymore.  I hate talking about this.  I hate it”.

“Has anyone ever told you this?  Has Rob ever told you that you’re too much for him?  Why would he stay with you if he didn’t love you?-”

“He is depressed now, too.  And the others”-

I almost break into sobs as I force this sentence out.

“Are so ashamed of me.  I am so ashamed of me.  I am useless.  I could have been so much more than this.  I fucked up everything.  Everything people hoped for me. This never ends.  It never will end.  For the rest of my life.  I could get better for a few months.  Maybe a few years.  But it will happen again.  It always does and it is so easy. What is the point?  Why don’t people understand that saying, “You’ve got through this before?” is not comforting?  It is damning.  How many more times?  I’m twenty two years old.  How much longer?”

“You have so much to give to the world.  You are more than this.  It’s depression that is telling you that you’re not. It’s not true.  When you get through this-”

I smile, for a second.  But it’s not what she said that made me smile.  It’s what I was about to say.

“There’s a building opposite my flat.  It’s high, higher than the top flat in this building.  And I see it at night, the gates are often open with people coming in and out.  I could get to the roof.  In the night, I could climb up to the roof and jump off.  It wouldn’t work from my window, I’d just break something”.

This in monotone.  We make another appointment, soon.

I told her that I am afraid to die but that I still find the thought of suicide comforting.   I told her that I hated myself for that as Vicky’s suicide, Brendan’s suicide and my dad’s slow suicide are, to me, the most painful experiences of my life.  I am angry at them and for them.  Still, I think about it constantly.  I am under no illusions, I don’t think I am going to arrange myself beautifully on eiderdown with a bottle of pills and a tearstained poetry book.  I don’t go in for that kind of melodrama. It is just an end to something that feels completely unending.

I need to view my illness as a separate entity or else I could not cope.  If it is just me, then there is no fighting it because I will never be my own ally.   So there is “it”.

Sometimes I imagine that my ribs are made of steel and that inside is my heart in a dull metal box.  It is like being locked inside an Iron Maiden.

The placid, public face that gives no indication of what lurks inside.  If you move, it hurts.  If you shout, no-one can hear.  How long for you can withstand it, with your eyes shut, pretending to be somewhere else.  When you open them, blackness.

The thing that almost wrecks me with sadness is that I don’t think I am this person.  It is alright to say that this is not the entirety of who I am but it is the most obvious, most recognisable thing about me simply because it is always there, when many other things are not. Things that other people might say are fundamental to who I am (my sense of humour, for example) are simply not there a lot of the time.  Because the one big thing that chips away at me is.

I think I might be an optimist.  So many bad things have happened to me, in my life.  I have forgiven everybody.  I am angry at people rarely and even then it’s easy for me to stop being angry. When other people are sad, I am there with my freshly baked batch of upside.   I still love people who hurt me, I probably love people who don’t love me back.  But I don’t mind.  Love is always positive.  I am funny, I think.  I think I have interesting things to say.  I see things in a different way than most people.

Am.  Was.  Might not be.  Definitely not at the moment.

I miss the “upside” of my own illness.  At least before it went to rot there would be times, wonderful times, of wallowing in sunlight, intense, glorious joy. But I can’t have one, or the other. If I have one then I will have both. The “happiness” needs to be natural for the depression not to exist.  If I had the choice, none of this would ever have existed.  My basis for comparison would be a happy day, and a sad one.  There would be no illness, there would never have been.  I’d never have met my CPN, never have been in hospital, never have been kicked out of college, never wrecked my exams after being off for six months, never have been so psychotic and sick that people thought I was fictional.  I don’t deal with this with “bravery”.  I want it to never have existed in me.

I am just locked inside. It is difficult to articulate this without melodrama. It is not sepia with my moon-toned face peering from a dusty window. It is just flatline. Dull. Very dull.  Dull voices that float through paper and glass.  Dull lights.  Noticing blonde hair.  And not caring.

Therapy Assessment

Or, “One hour of me feeling defensive and being asked questions like, “Why do you use labels like manic depression”?

Because I have this treatable illness called “manic depression” and you were asking about it? I’m fairly well read when it comes to psychiatric diagnosis, mostly because I write this blog and like to be informed. Using the “label”of manic depression comes naturally to me, because I write about it so often. I also find the whole thing easier to understand and explain if I can use the bloody words that describe the illness. I hate this about psychiatry- I do my best living with this, but it does affect my life significantly. I don’t “let it”, I’m not weak, it just does because that’s what it does to me. Just because it affects me and I acknowledge that, it doesn’t mean that I define myself by it. I use the phrase, “I have manic depression” rather than, “I am manic depressive”. If I had another illness that significantly affected my life, nobody would call it a fucking label. People are always very suspicious if you know anything about psychiatry. I have the internet, a library and a curious mind- if I’d been diagnosed with any illness I’d have found out everything about it by now. It is how I make sense of it and deal with it. If it was still this faceless thing, like it was, it would be harder.

They also asked if I was showing them my scars. I wasn’t, I was fiddling with my bracelets because I was nervous.

I did talk about eating issues and body issues (which I find nigh on impossible talking about in the flesh- manic depression, fine, it’s almost my job to talk about that) but fucking hell, that was so traumatic and I feel completely shaken and tearful. I really didn’t expect for it to be so hard, and sitting there in front of two impassive faces was just fucking horrible.

They asked me what I wanted out of therapy. I told them Rob was worried about me, and I wanted to make an effort to try and sort out my eating and body issues as much for him as for myself. And because dysphoric mania is too easily triggered by antidepressants, I’d like some help in coping with depression since I can’t take medication for it. In short, just some help coping with things.

I just hated that whole hour and feel shaken by it. They were nice, it’s just so fucking hard to talk about that kind of stuff in front of strangers when you’re not absolutely pissed. Here’s why I prefer to write than to talk.

I’m repeating the experience next week.  Ah fuck.

At least I went, though! I was so nervous beforehand that I chainsmoked for two hours.

The Sane Guide to Living with Mental Illness: Medications

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

Anyway…

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

So!

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

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

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

So, here is the guide to medication.

1. You’re taking them because…?

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

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

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

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

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

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

2. Know your enemy

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

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

3. Side Effects

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

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

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

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

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

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

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

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

4. Don’t expect miracles.

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

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

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

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

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

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

5. The medication Hissy Fit.

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

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

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

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

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

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

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

and DO:

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

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

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

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

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

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

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

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

Labels and language

Bipolar disorder is “just a label”.

Not to me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Shout Back

For no reason at all, tonight I’ve got suicide on the brain, which is why I’m sat over here typing because my head is screaming angrily at me. When I have a nice, blue skied, life-is-here kind of day when I feel depressed, I get the idea that it’s a good place to “leave it”. A quiet night at the end of a sunny day.

I’m pissed at myself for this and trying to rally other parts of my brain to shout the voices down. How much of a slap in the face to people like Rob are these thoughts? Spending one day with someone, let alone three years, is taking time out of your life. What is the point when that other person would just kill themselves? What’s the point?

Ah, spiral of guilt. I hate myself for thinking like this. I hate my mind for working this way.

I still want to stop taking medication. You’d probably think, “Yeah, don’t”, but sometimes I get stuck thinking that it would somehow be the solution to all my problems. For all my rhetoric and analysis, I still can’t help thinking in this way.

Wah. Anyway. I have something else on my mind that I’ll write about tomorrow.

EDIT:  It’s 4am and I’m still not asleep, but exhausted.  I have a craving for Coco Pops.

The Insane Guide to Living With Mental Illness: The Mixed Episode

Ah, here we are. It’s now time for me to introduce the special circle of hell reserved for the manic depressive: the Mixed Episode. These were meant to be funny, sarcastic guides (like the Depression one was) but somewhere, it’s become all serious!

A mixed episode (also known as dysphoric mania or, for depression with hypomania, agitated depression) bears a little explanation. It is literally a mix of manic and depressive symptoms at the same time. It’s generally considered as the most dangerous of mood states, being that if you want to kill yourself, you have all the energy and frantic invention necessary at your disposal with which realise that particular dream.

However, if you believe the DSM-IV, relatively few people with bipolar disorder experience these episodes. The reason? It is strictly defined as mania and depression for a week; leaving out hypomania, thus nobody with bipolar II or cyclothymia has ever had a mixed episode. From my forays into BipolarLand, reading and research, please take it from me (and the dissenting voices in the psychiatric community) that the DSM-IV needs updating. But lucky me, eh, bipolar I, so, by the DSM-IV rules, anything goes.

It lies close to my heart. Dysphoric mania is, by far, the most common episode that I experience. Those much romanticized euphoric manias has almost disappeared as I have grown older, and my manias are now increasingly black and almost always psychotic. It’s why I’ve escaped being diagnosed with depression. I’ve been suicidal and depressed many times in my life, but the manic edge which accompanies my depressions has exempted me from being considered clinically depressed. It is one of the reasons, I suspect, that even when I’ve been in front of a psychiatrist absolutely suicidal, the relentless diagnosis of bipolar I has always been returned.

It is difficult to describe how it feels; imagine the white noise of racing thoughts pitched at total destruction and despair, horrible images, frightening visions, flights of ideas punctured by the bleak feelings of failure, endless energy overriding utter, utter exhaustion, nameless guilt, manic lack of inhibition, rambling and ranting, restlessness, the damaging impulsivity and grandiosity of mania, terrible agitation, rage, anxiety, panic, psychosis, paranoia and fear. It can be constant, or can fling you from mania to depression and back again extremely quickly.

A mixed episode landed me in hospital, and mixed episodes are almost totally at odds with normal functioning; it is simply impossible to go about your normal life when in a mixed episode. Everything is frightening or an insummountable challenge.

Yes. They’re no fun. So, here’s the Insane Guide to the Mixed Episode. I found it difficult to be sarcastic about mania, it’s almost impossible to be lighthearted about the dysphoric kind. So this guide is kind of crap.  Apologies.  Read the previous ones instead by clicking on the category, The Insane Guide…

The Mixed Episode

Manic, depressed, who the hell cares, you can have it all! Welcome to the mixed episode. You may never leave. I really mean that.

1. Eating and self-care

2. Social etiquette

3. Hobbies

4. Sleep

5. How to deal with those around you, who may not be so excited about your insanity as you are! Includes lovers, friends and the medical profession.

6. The future

1. Eating and self-care

Have you eaten? You can’t remember the last time you ate. You probably should eat, but you can’t focus long enough on anything, let alone the thought that you need food. Everything feels like it’s been put there to test you, and you find yourself by the kettle in tears of frustration. You can’t even do that, a task that wouldn’t tax a five year old. You can’t do anything.

You brush your hair and teeth, on automatic, and neglect to put on underwear, simply forgetting. It doesn’t feel very important. You can’t really concentrate, your clothes are a jagged mish mash of colours and shapes, old blood stains seeping through the cheap fabric. You look in the mirror but you can barely focus on the image. There’s pictures in your head, horrible pictures, that seem to permeate everything you try to look at.
2. Social etiquette

You did go out for a drink but found yourself crying at a table alone. You’ve been trying to talk to your friends but you just can’t, you can’t communicate at all. The words, rapid and free flowing, are not making sense. People can’t keep up with you. They listen, for a second, but you’re going too fast, and they drift off, nod, and turn their attention from you. You don’t look right, your eyes are fire in pitch from lack of sleep.

Self pity kicks in, and you’re convinced that everybody hates you, more than hates you, wants you dead. You are ferociously, wildly, suicidal and you begin to feel angry at those around you- why can’t they see that, why can’t they help you? The strong desire for someone to reach out is not as strong as your desire to be alone, so you leave, and walk quickly into a cold night, frightened at every single sound that you hear.

3. Hobbies

Nothing from the outside makes a difference; you can’t concentrate on a film, the things that used to calm you down don’t and your panic is rising. How can you slow the thoughts in your mind? So you have new hobbies- running on the spot, talking to yourself, anything to calm down. You’re exhausted, your whole body is screaming out to stop, but you can’t. Relentless, frantic energy grips you and there’s nothing you can do to get rid of it. Absolute rage and frustration courses through you, and the room is wrecked. You get up and write disjointed prose, the words jumbling up, making no sense at all.
4. Sleep

You tried to sleep, you lay down, but your head felt like someone was chainsawing inside, so you got up again. You want to sleep, but you can’t, you’re restless and anxious and the dark shadowy shapes in the room seem to be moving.

5. How to deal with those around you, who may not be so excited about your insanity as you are! Includes lovers, friends and the medical profession.

You’re depressed, you know you’re depressed, despair, sorrow and complete hopelessness is flooring you, but the doctor doesn’t know what’s wrong- you’re not eating too much or sleeping too much, you’ve had more energy than you’d had for some time and although you sit and talk for half an hour, nothing makes a difference.

Your friends are long gone- something you did or said, you can’t remember. Loved ones keep their distance, unable to cope anymore with your shouting and seemingly untriggered crying fits. It just compounds your guilt- you’re a bad person, and you know it.

6. The Future

You can’t think straight- tomorrow seems like it’s a thousand years away. You have no idea what you’re doing or what you’re going to do. You’ve been awake for days and are starting to become very paranoid. You don’t know how to feel safe or how to stop, you just want the agitation to calm down, for one second.

Crap guide there. I find it hard to write about. It’s just a horrible way of being and all I want to write is, “I’M SORRY” to anyone who might be going through one. To be honest, I’ve been getting so panicked and bizarre lately that I think I’m not doing too well myself. Today has been a White Noise Day, that is, very rapid, quite scary sequences of thoughts and voices going over and over in my head that frightens me and makes it impossible to concentrate.

Sometimes, I’m tempted to write down everything my brain voices say so that I can understand it. But I can’t, because they move so damn fast that it seems like malevolent gibberish.

The Sane Guide to Living with Mental Illness

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

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

I am fairly sane at the moment.

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

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

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

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

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

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

But this is good.

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

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

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

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

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

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

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

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

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

Ah, this old chestnut.

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

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

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

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

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

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

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

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

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

3. If it’s not working, say so.

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

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

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

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

4. Get support.

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

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

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

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

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

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

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

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

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

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

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

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

6. Mentalist- know thy services.

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

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

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

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

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

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

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

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

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

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

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

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

Mental Illness and Mortality

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

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


 

Clinical & Research News

Death Data Have Researchers Searching for Answers Eve Bender

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 


 

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

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

%d bloggers like this: