How My Dad Died.

Originally written in April 2007

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

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

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

Wedding Day

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

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

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

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

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

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

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

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

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

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

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

I wish

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Reality of it

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

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

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

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

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

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

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

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

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

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

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

The nurse told me to come home.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Labels and language

Bipolar disorder is “just a label”.

Not to me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The 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:

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Clinical & Research News

Death Data Have Researchers Searching for Answers Eve Bender

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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