The Mental Health System: Divide and Rule

So, imagine this:

You have an illness. It has a name. Your right leg doesn’t work properly. You can use it- just about. You get around on crutches. You’ve had this problem for a while; you’ll have it for years to come. You have a doctor and a therapist who help you with this illness. You’ve spent years building your relationship with them. You trust them. You’ve told them all the deep, dirty secrets about the pain and suffering this illness has caused you. It’s embarrassing. It’s the kind of stuff you can only tell someone you’ve come to trust after years of them caring for you.

It’s some time later. Now your left leg doesn’t work. The doctor notices this. “Oh, I see your left leg doesn’t work now”, he astutely notes. He nods. He glances at the therapist, concern flashing in his eyes.

“What does that mean, doctor?” you ask. You’ll probably need a wheelchair, you know that. But it’s okay, because you also know that your trusted doctor and therapist will be there to help you through it.

“I’m sorry,” the doctor says, shaking his head. “You’ll have to be treated by the Left Leg team now”. He waves his hand vaguely across the room. You twist your body and turn. From the open door, you see another team- the Left Leg team. It is populated by people you’ve never met.

How do you feel?

“Why on earth is there a left leg team if it is still my legs that are damaged?” you ask incredulously.

Why indeed?

Mental health care is now organised into teams working on separate diagnosis. I didn’t realise this until I started working in mental health myself (if being a mental health nursing student is classed as, “working”. We do 37.5 hours a week for £1.25 an hour, so maybe).

Mental health is clustered using a HONOS scale (Health of the Nation Outcomes Scale). It’s part of the Payment by Results policy.

Using this tool, people are, “clustered” into groups. What group you end up in depends on your symptoms and functioning. The clustering based on a subjective questionnaire. What you enter then spits out a cluster. This is automated but I should mention that it can be manually overriden. At the point of completing it, you usually need to give a diagnosis. This can be after the first meeting with someone.

The diagnosis- the label, if you will- is now the most important part of mental health care as an adult.

Different teams treat different illnesses. Two we’ll ocus on are:

MAP: Mood, anxiety and personality disorders. That’s people with bipolar disorder (without noted psychosis- we’ll get to that later), depression, anxiety disorders (you have your somatoforms, your OCDs, your GADS, your acronyms) and your personality disorders (which, in secondary care, tends to be people with borderline personality disorder).

Psychosis: These are people with psychotic disorders- schizophrenia, namely.

This means that the whole, “holistic” care in mental health is a mirage. As you can see, in terms of the common mental illnesses, there are two main groups: MAP and psychosis. Instead of treating people as having a range of these symptoms, difficulties, challenges and preferences and referring them to the right people, you are now classed by diagnosis. Diagnosis, is partly subjective. People can have different diagnoses depending on who they see, what their speciality is and how they present at the time. But as soon as someone is referred, they are HONOSed and diagnosed, and grouped accordingly.

There are troubling ramifications of this. One is for the patient, particularly the patient already in services. As an example:

You are a patient who has borderline personality disorder and OCD. Anxiety and personality- You are assigned to the MAP team. In BPD, building up therapeutic relationships may be difficult. It might take a long time. It might take trial and error. It needs to be consistent and boundaried. And, like with any person- who has BPD or not- it depends largely on the dynamics between two people. Sometimes you just don’t get on with people. This is human.

But if you find someone you get on with- that’s great. And particularly in mental health care, where you often have to discuss painful, embarrassing or bizarre topics with someone.

But you begin developing symptoms of schizophrenia. You have an episode of true psychosis. What happens then is that becomes your working diagnosis. You are then assigned to the psychosis team. You no longer have the same doctor or same care co-ordinator you have spent years building a relationship with. But you still have BPD and OCD, too. What happens to those problems?

Clare Allen touches upon this in the Guardian, in a understatedly heartbreaking way.

It works the other way. You have an illness that has been treated as bipolar disorder. You have psychosis without mood symptoms, it changes to schizoaffective disorder. Despite the trust you’ve built, despite your relationship, despite the fact that they are treated in almost exactly the same way, you will moved to another team of people.

This is hardly, “holistic” and, although it’s in its early stages, I’m also willing to bet my life on it being damaging and causing people to disengage with services.

In my own experience, my diagnosis have fallen within MAP. I have a diagnosis bipolar disorder and I had a diagnosis of BPD for a while. I had 2 care co-ordinators, whom were both great. But it took me a long time to build up that relationship. Part of the reason I airily dismissed CMHT involvement when I moved borough (aside from the fact I’d been referred because my GP wanted to be on the safe side started Lamictal, and because I am stable and don’t feel I need them) was because it is exhausting retelling your story, building that relationship. I didn’t want to do it again.

The second ramification is on the professionals. I’m doing my training as a nurse at the moment and one of the things I need to be able to do is give depots and physical care. There is not a lot of depot giving in MAP. Most patients aren’t on depots. A lot of the needs are social ones, rather than physical ones, which also blurs the lines between professions; particularly social workers and nurses. So nurses who have studied for years are being deskilled.

There is also the lack of variety. Not that patients aren’t different; they are. But dealing with the same symptoms, and being deprived of the challenge of dealing with something totally new, isn’t bolstering. Nobody- no doctor, nurse or therapist- I have spoken to about this is happy with it. But, as we know from the NHS Reforms, the government doesn’t give a flying feck how people working in the NHS feel.

To me, this is an extremely counterintuitive system. Healthcare is supposed to be increasingly, “holistic” and yet now there is pressure to diagnose people quickly, ticky box them and allocate them accordingly. The care they receive is not based upon their needs or preferences, but diagnosis, and when that changes, so does their care, despite what their needs or preferences might be. It also breaks up team who worked together; it clusters not only patients, but professionals.

Now, this is a very simplistic summation (from my somewhat inexperienced perspective). But I must ask:

What’s the point?

EDIT: Feel free to discuss the plus points in the comments! I know clustering has a use, as do care pathways. In terms of the specific grouping, though, I’m failing to see the upside.

I should also elaborate: I am “pro diagnosis”, if you can be such a thing. I think diagnosis are important in mental health; not just for the person who has mental health difficulties to have a name for something but for guiding treatment. What I don’t agree with is diagnosis being the be-all, end-all of treatment.

I’m also a BabyNurse (one who wants to be a therapist and looking into switching to social work) so do correct me on points.

The Motherland

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

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

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

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

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

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

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

The Sane Guide to Living with Mental Illness: Medications

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

Anyway…

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

So!

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

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

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

So, here is the guide to medication.

1. You’re taking them because…?

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

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

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

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

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

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

2. Know your enemy

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

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

3. Side Effects

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

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

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

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

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

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

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

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

4. Don’t expect miracles.

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

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

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

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

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

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

5. The medication Hissy Fit.

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

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

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

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

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

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

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

and DO:

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

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

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

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

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

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

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

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

Labels and language

Bipolar disorder is “just a label”.

Not to me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The 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.