A year ago yesterday, I banged my head hard enough to cause lasting damage (that they can’t see on an MRI, but has caused problems from memory and sleep disturbances, to decreased creativity, worse depression and beyond).  It’s taken nearly a year to accept that this ‘change’ has caused issues that I can’t simply laugh off, and yesterday was an odd, pensive day.

Things have been changing for me for the last year – I’ve been adjusting to finding it harder to work, or focus on much for periods of time longer than a couple of hours, I’m in my third year at Uni, starting in two weeks time, and I’ve got a lot of thinking to do about how to repair the damage that an errant hacker did around here.  But we’re back, hopefully this time for good.

And to kick off, we’re looking for new writers, to inject fresh voices, either as guest posts, or as regular writers, to the site.  If you’re interested, drop me a line.

The Manifesto

It’s very easy to look at the list of things we talk about and wonder what we mean, and easier still to misconstrue them (as some comments have highlighted ) so I thought I’d explain what I mean.

Bi-polarbears aims to:

Offer support, and honest, open views on the current state of the global view on mental health.

(we share information that isn’t ‘controlled’ or ‘influenced’ by sponsorship and can be readily translated into slightly more understandable language where possible, and are not geographically limited to what we talk about)

We aim to encourage and empower people to understand that mental health is not a stigma, just another way of relating to people, and that variety is an integral part of being human.

(Not a stigma = there is no shame in the diagnosis we all have – and if you’re doing everything you can to support yourself, no shame in letting others know.  Variety is integral part of humanity = genetically speaking, we can’t all be perfect, and personally speaking, it’s not any-one’s fault )

Offer the understanding and knowledge of when to get help

(A lot of the people I encounter expect to have to cope alone and don’t seek help when they need it – or worse, hide because they think accepting help is a form of weakness – on the flip-side, there are people out there that ‘use’ mental health as an excuse and self diagnose.  Neither is a great way to live, so we offer support for both)
Offer the experiences of others on and off of all forms of medication

Offer a venue of interactivity through essays and posts (blog) and an informal meeting place to discuss anything about mental health (forum)

(the forums are gone now and may never be back because we took so long looking after them that we couldn’t write articles – but we intend to share what we learn in accessible ways and hopefully promote discussion)

Above all though, we’re here for you.

(so, if there’s something you want me to write about or explain, let me know!)

I’m going to explain my research process in greater depth in another post, because it works for academic, personal and professional projects, but I have google alert emails daily that post information (news and blog posts mostly) that mention my keywords prominently.  In the ‘bipolar+disorder’ set, I found this link, and wanted to share the underlying idea with you.

The link was called ‘common causes of schizophrenia and Bipolar disorder’ and talks about a study that was undertaken in Sweden and has recently appeared in the Lancet.

What the study found

Though I’ve not seen this study myself (because I can’t access Aleph, the computer’s library from home), it says that there was a statistical link found between those with bipolar disorder and the incidence of schizophrenia, and vice versa.  Net result of the study of 2 million families was interesting, and probably not for the reasons listed in the report.

Of the 2 million studied families, 35,985 (1.7% – or just under 2 in 100) had schizophrenia and 40,487 (2.02%) had bipolar disorder as a confirmed diagnosis.  In total, they amount to less than 4% of the studied group, and yet, they found that there was a link of increased incidence between the two diseases if you have one in your family.

I know how convoluted these studies can be, first hand – and my tutors deliberately teach me to question the information in every study to ensure that it meets both scientific, ethical and common sense standards.  And the question now arises, having looked at the brief abstract, ‘is there an increased or correlatable percentage between the 96% and their chance of developing bipolar disorder?  What diseases make up the ’1 in 4′ percentage that is always so highly vaunted in medical fields, if bipolar and schizophrenia only make up 4% in these studied cases, and most importantly, is there a real world value to this information, other than a statistical link to two diseases that paralyze families?

I’ll let you know what I find out

The long and short answer is that to run a community ‘like that’, beyond the forum, would need resources that I’d hate to even consider – resources such as a psych council on hand to deal with any crises.

And to be completely honest, I believe that we shouldn’t ‘segment’ ourselves away from society – and to build a community designed solely for ‘us’ would once again add to the stigmata surrounding bipolar disorder.

And that’s the short answer.  The longer answer is – I don’t segment my own life, and would never expect others to do the same – where we gain support is where we’re all united, and in a community of like minded individuals, we’re not completely at one with our wider community.  I believe that we pull strength from those that cope ‘differently’ to us and those others are role models in some ways to more accurate and authentic behaviours.

Image by Shutterhack via Flickr

Steps to happiness

Connect
Developing relationships with family, friends, colleagues and neighbours will enrich your life and bring you support

Be active
Sports, hobbies such as gardening or dancing, or just a daily stroll will make you feel good and maintain mobility and fitness

Be curious
Noting the beauty of everyday moments as well as the unusual and reflecting on them helps you to appreciate what matters to you

Learn
Fixing a bike, learning an instrument, cooking – the challenge and satisfaction brings fun and confidence

Give
Helping friends and strangers links your happiness to a wider community and is very rewarding.

Does this sound like anything familiar?  This is my list every day.

Though we rarely talk about ‘the real world’ and real world solutions on Bi-polarbears, I thought it would be a good time to address things.

Panic is not productive

Panic is one of the few things you should NOT do. Unless you really need the money, because you’ll be making a loss, don’t sell anything – your house or shares, if you have them. Sit tight.
Panic also doesn’t help your mental health either – stress isn’t good for anyone, but those with mental health concerns are usually far more susceptible to worries.

Budget and stick to it

Budgeting and sticking to plans you’re making will put you in control, but you can also ‘budget’ your mental health in some ways. If you have a predictable patter, if you can, keep treats for when you’re feeling low – if you’re saving them for occassions you really need them, they’ll last better, and make YOU feel better.

Xposted to Kai@LJ and bi-polarbears
Written, 10th October 2007.

I wrote this entry because I’m of the opinion that people (in general) don’t understand how it feels to be like me. And though this is mainly complaint, I’m going to start with the positive.

Being bipolar is awesome in many ways. It’s something I’ll never change – never remove, because to remove it is to alter, at the core, what I am. I was asked a while back what I’d do if there was a cure for bipolar disorder – and I answered that I liked being bipolar. It sucks when I’m depressed, but I guess that’s my price for being brilliant occasionally. Dave said to me once, that I’m as awe inspiring and bright as a star when I’m at my best. I don’t know if he’s right, but I do know that I see things differently. Colours are, whole experiences for me. Trees are an amazing juxtaposition of terror and wonder for me – I’m scared of the world, on the whole, but incredibly at peace in the heart of nature. Despite the fact that though I see beauty everywhere, it’s incredibly difficult NOT to see danger too.
I think differently too – I tell stories that others just don’t think of – like merry-go-rounds full of corpses, and being shot in the head by one of my characters, cause he didn’t like ‘Mary sues’ – he thought, it turned out, that I was IAB (he’s a police man). And there, I betray my other oddity. I think of my characters as real people, living in my head. It gets slightly schizophrenic in there sometimes – when I’m arguing with my pen names, and my characters. I’ve likened it to a ‘green room’ – and mostly, they wait their turn.

There’s more good to being bipolar than that – my memory doesn’t work well, but I have an unerring ability to see the conclusion of most stories. I’m not always good for that, but most of the time, I see twists coming. I don’t think in straight lines either – I’ve got ‘intuitive’ down to a fine art. One of my counsellors said it was something like parallel processing – I just think I consider things differently.

It’s an unenviable position to be in – knowing, with crystal clarity, exactly how dark things get. How much it hurts, till every breath literally paralyzes me because it’s all I can do without crying. Sitting up in bed makes me cry. Texting a friend and begging them to help me before I do something stupid fills me with shame. Crying in public is about the ‘worst’ of the sins I can commit. I was always told not to make a fuss, not to cry. People aren’t used to seeing others crying in public. We cry in private – just as we hurt ourselves where others can’t see. We do it because we’re already hurting others with our sadness, our inability to interact and be the people they need, so we stay home.

I don’t choose to be bipolar – its part of my genetic code. Therapy – the one that I go to anyway – is designed to teach me ways – not to live with it myself, but to cope with the fact that there are people that don’t understand, or choose not to. Invariably ‘normal’ people think that they won’t ever hit the stage that I’m at. And I sometimes look at them and hope they don’t. It takes a very strong person to survive as a bipolar, and even in my broken state, I’m stronger than most.

And at the same time, I’m weak. I can’t deal with people fussing over me. I can’t stand it for my friends to be put out, but at the same time, I deeply need them. I can’t be alone, but I don’t want company. It’s like having something inside your head throwing a hissy fit no matter what choice you make. Dammed if you do.

The worst of it is the feeling that it’s screaming in there, constantly. There’s this, glassy, numb feeling in my head – like it’s full of ice. Slide down a bit, and my cheeks are burning – it’s either hot, stinging, painful tears, or because I’m mortally embarrassed and trying not to cry. I wish myself dead frequently when that hits me, not because I want to hurt others – but because I want to STOP hurting them.

I’m competitive at the best of times, but when I start falling out of ‘favour’ – either in reality, or because I just don’t understand, that hurts me too. I can’t laugh it off and bounce back now – and I misunderstand and second guess so often it’s hard to get people to actually talk to me. I question everything – from whether the kids are mine, to sometimes, whether life is real. I’ve been known to deliberately do something stupid just to test it – like cut myself. I’m mortally ashamed of that too – perversely though the scars remind me I’ve survived again. Each notch though gets that little bit deeper. I’ve nicked an artery twice doing that and it’s so hard to explain to doctors, cause that’s one of the few cardinal sins of mental health. We don’t hurt others, and if we can help it, we don’t start self harming.
And that’s the thing. It’s not exactly a compulsion. I’m incredibly lucky. I don’t like drawing my own blood, but if it comes down to it, I need some reason for the amount of pain I’m in. If I know there’s something physical there, I can live with it – or at least hang on till I can breathe again without thinking about it.

I’m paranoid too. I get scared that I’m going to burn down the house – or that someone’s coming to get me. I’m highly suggestive – if someone says something to me often enough, even if it directly competes with my beliefs, it’ll stay with me. This means I can be influenced to another point of view, eventually. Worse than that, I actually believe in ghosts and axe murderers and other stuff that, to be honest, is fairly unlikely, but still possible. When the nuclear threat starts ramping up, or they talk about terrorists, I start working out how to get back to David and my children. As far as I’ve worked out, I’ll get about halfway home, if I’m lucky, if it happened at Uni. I’m terrified by that, but I have no control over it, so it’s a fairly moot point. When I’m really having trouble with other stuff though, that starts really bothering me.
Things like leaving the gas fire on – or the cooker – or the boiler randomly exploding, a fire in the garage – a fire next door – a fire in the attic cause of the electrics. Those things I know about and I check for. I wake up about 10 times a night and check the house. Sometimes I just see if I can smell anything in the air. Other times I’ll check the whole house. Where we used to live, I couldn’t hear the rain.
Here, I hear it, and the first time I woke up and it was raining that hard, I thought someone was in the bathroom washing off knives. I couldn’t move for four hours.

That’s called sleep paralysis. It’s also called ‘night terrors’ – something most psychologists think we outgrow as children. It’s got many names – though the most poetic is the Japanese description, kanashibari, which, roughly translated means, bound in metal. I also get the other half of that aspect, hallucinations. Sometimes I forget, but most of the time I remember.

When I’m very depressed, or incredibly stressed, I disassociate. It’s like flicking a switch. One minute I’ll be stammering along – and the next I’ll be gone, completely. I think my nose is bleeding, or at least I’ve been told that I act as if it is, and wipe it, usually till it does. I don’t talk, and certainly don’t recognize people talking to me. And I’m usually inconsolable coming out of it – to the degree that the only way Dave’s found of shaking me out of it – something that a psychologist in Edinburgh corroborated, is getting me to respond to something tactile. It’s a bit difficult to carry my furry blanket around with me during the day, but that’s what worked last time.

The sum of all of this that sometimes I can’t cope with the real world. Not because I don’t want to, but because I don’t want to put people in the position of needing to work out how to handle me. It’s really unfair, but I’ve never met a group of people, on the whole that knows what to do with me. More importantly, I don’t interact well with the bits of the ‘world’ I should, and that distresses my friends. Which is disruptive, which, in turn, triggers yet more guilt in me. So, I usually choose not to put myself in that position willingly – there’s no promising I won’t go there, occasionally, unwillingly, but if I can avoid it, I don’t go out at all when I’m having a bad time, and head home if I know I’m going to be triggered into it. Therapy triggers me a lot. Not always, but often enough to make me cautious.

Another freind of mine needs seven hours sleep. She’s trained herself into that sleep pattern, and if she oversleeps she feels dopey and not with it all day.

Me? I do perfectly on four hours of sleep a day. I manage ok if I sleep longer, and not too badly if I sleep less – but most nights, all I sleep is four hours a night. Which means, on average, I have two to four hours more productive time than other people do.

Correlations and fact
My point is that ‘normality’ is the setting on appliances – normality in humans only occurs because we’re either working to an expected ‘norm’ – or that expected norm has been formulated because people have reported it as thier experience. When that catalyses, it becomes a norm. Norms are something that can create barriers – or offer a benchmark to kick them down. It’s our choice, as a society.
What do you think? Any sleeping anecdotes you’d like to share?

(head nod to Chris Brogan for bringing up the subject on his blog)

Those of us with mental health problems can count ourselves in esteemed company:

Hugh Laurie
Stephen Fry
Axyl Rose (front man of Guns and Roses)

Virginia Woolfe
Sting (front man of the band Police, and pop star as a solo artist)
Sylvia Plath

As you can see, each person on this tiny list is considered excentric, or has at one point gone off the rails in one way or another – some succumbed to the urges that the illness inspired, and others have fought back.  Some are winning, in a public way, and others are working on it as they go.

Mostly though I wanted to highlight that it’s not something that we’re facing alone – and that it affects us no matter where we are in our lives – and where we are in our carreers.

And I got to thinking.

I’ve had to explain bipolar disorder for so long in terms that others can relate to that I’ve found that I’ve lost some of my impact. That’s not a good thing.
So just a quick statement.

BIPOLAR DISORDER is not PMT.  BUT – if it gives you a reference point to understand how we cope (or don’t in some cases) more the better. Just remember its a reference point. Like PMT, bipolars don’t have an control over how they are feeling – unlike PMT, it doesn’t go away and doesn’t only affect one gender.

I think that if you’re bipolar and that way of looking at it really offends you – that’s your choice, but I would also like to point out that if something is so alien to someone that they assume you are dangerous, crazy or unstable constantly in the first place, its my view that a reference point, no matter how strange, is better than none at all.

And no – at no point did I actually compare bipolar disorder to PMT – you can see the origional article that lead to this post here: What is…