How Social Networking is Working For Mental Illness

This week certain events have made me realise what a powerful set of tools we, the nutters, have at our disposal in Internet social networks.

First the level of understanding I witnessed on my Twitter feed following the suicide of Wales football manager Gary Speed was truly heartening even if one did feel that a handful of tweets were more out of a morbid desire to be involved or to have said something. Equally impressive was the quick work of mental health charities, many of whom I follow, in tweeting information related to suicide and depression in an attempt to quickly dispell myths surrounding Speed’s death and to, for want of a more appropriate term, ‘cash in’, using his death as a springboard to raise awareness amongst people who perhaps had given little thought to mental illness previously.

The second thing that made me consider the strength of social networking for mental illness was an accusation made by somebody at my partner’s place of work today.

I’ll make the story short as it really isn’t the point of this post.

Around three weeks ago I began experiencing by far the worst manic episode I have had since diagnosis. My GP promptly took me off of my usual anti-depressants to tame the crazy. In the meantime however he struggled to get in contact with my psychiatrist for a new, more effective prescription.

Yesterday on learning that there was still no progress after a week’s hard fall off of my regular drugs I lost it, calling the community mental health team in what I like to call the all-the-words-are-one-long-snotty-word tears to beg for an appointment which, bless the poor lady translating my slurps and nose blows, was immediately granted.

This meant my husband would need to leave work to look after the kids and, to his concerned mind, me. He did exactly that. I went to my appointment. I got my shiny new lithium and the promise of a lifetime of blood tests and thyroid problems.

Today my already stressed husband was pulled up by his workplace for lying. Because I was cheerfully chatting on Facebook and Twitter whilst between appointments and in waiting rooms, the only conclusion drawn from this was that he lied to get out of work or I lied to him about the illness.

Make of that what you will but I mention it as an illustration of just how wonderful a tool something like Twitter can be.

No sooner had I made my 4sq check in at the hospital (I WILL BE MAYOR OF CRAZY TOWN) than a good friend tweeted me; ‘you ok?’. Having reassured her that it was nothing she needed to rush round with my Valium and a cup of cyanide antidote for, we continued making plans to go to the cinema later this week.

I posted some stuff about music and did a Shoe of the Day post on my other blog , probably talked about owls or Leveson…whatever. It helped. It distracted me.

In this way Twitter, and the members of its social networking family, has been instrumental in keeping me sane over the last few months.

You see a large part of my problem is social anxiety, an inability to deal with day to day interactions. So on days when I can’t face talking to the woman on the till in Sainsburys or picking up the phone, even to my best friend, being able to merrily chat to people makes it all the easier to feel normal and connected with the rest of the normal world.

Twitter has even led to new friends – people I’ve got to know well before having to take the plunge and actually have one of my nonsense red-faced conversations with them. Some I’ve still yet to meet but would consider more than mere acquaintances, others I now regularly spend ‘real’ time with including the concerned friend I mentioned above who despite living just metres away became a ‘tweep’ first before flushing me out of my hole.

I’ve also met other people with bipolar through the web, had conversations with representatives of charities such as Mind and Time To Change and generally learnt more about my condition while also being able to treat it with a degree of honesty I’d shy away from in a face to face conversation.

But most important is the sense of purpose and distraction that social networking can give to a person with mental illness. Pre-Twitter what would one do in the middle of the night warding off a panic attack or fighting insomnia? Now the answer is simple – post ‘can’t sleep. Fucking insomnia!’ and receive three replies from people you sort of know all over the world; ‘me too, need…more…sleeping pills’, ‘try getting up for half hour & trying again’, ‘get off your iPhone then you dozy cow!’ etc…

Or even better are those moments when you engage yourself in a conversation about something entirely unrelated. I’ve distracted myself on numerous occasions debating the relative merits of cats and dogs, discussing international bacon festivals and naming the fourteen top moustaches of the twentieth century. All conversations I’m pretty sure busy real life friends and family don’t want to be pulled out of work for but that there’s invariably an American/home worker/abuser of lax office internet policy available for.

Whatever its faults – and it has ever so many – I think that social networking has probably saved a life or two. It’s undoubtedly saved my sanity more than once. Not only that but without Twitter where would I find an captive audience for the tale of running out of shower gel and using my son’s Ben 10 Foaming Alien Slime to wash with?

Exactly.

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Do our children need anti-psychotics

An investigation by Channel 4 news has revealed that as many as 15,000 British under 18s were prescribed anti-psychotic medication last year.

In fact C4’s statistics are taken only from GP surgeries with no official data from specialists and hospitals. In my experience GPs are reluctant to prescribe this level of drug, referring patients to a psychiatrist instead. With that in mind the true figures could be so much higher.

I could regurgitate C4’s piece, which points out that the results of this research come in the wake of the governments crackdown in ‘chemically coshing’ of the elderly, other vulnerable groups, including young people and the often coshed sufferers of depression (er, should we not be cracking down on this practice for everybody? Just a thought…), but you could just go and read that yourself – the link’s up top there.

Instead I’m going to tell you about my own experiences of anti-psychotics, GPs and prescriptions.

I’ve been prescribed a host of different medications, on and off label, over the years including a wide range of anti-depressants for mood and for pain, sleeping pills and anti-psychotics. Yes, I’m a hypochondriac.

I’ve recently stopped taking a drug called Quetiapine, an anti-psychotic, after negative experiences. To give you an idea of the effects of this drug, Quetiapine is often found floating about in prisons, sold as ‘baby heroin’. While for my diagnosis of bipolar this was a perfectly reasonable prescription, if my child was prescribed the same I’d have a few questions.

The Quetiapine had such a sedative effect I could easily sleep for days at a time, at one point during the summer holidays waking at 3pm only for my five year old daughter to tell me ‘I tried to wake you up. It’s ok though, I’ve been cleaning the house.’ My attention would often drift to the point that I’d find myself snapping back to life twenty miles down the A14 or, less dangerously but with monetary consequences, staring unfocused at my computer screen for half an hour, fingers poised but unmoving.

And this was at the lowest starter dose, 25mg. My psychiatrist told me that he had some patients on 800mg. I recall particularly his description of the difficulty of finding a dosage to suit his patients: ‘I have one fifty year old man, a big ex-builder, who functions well on the 25mg dose. Another of my patients has to take 800mg, she’s probably five foot and very slim.’

Last year I spent my Christmas in A&E hooked up to a drip with a suspected reaction to another drug, Lamotrigine, an anti-convulsant often used in the treatment of bipolar and schizophrenia. The allergic reaction is a common one and absolutely deadly.

While for me these drugs weren’t a good fit, for millions they really do work, I don’t dispute for a moment that the responsible prescription of anti-depressants, anti-psychotics and anti-convulsants is a very important thing that improves the lives of many. For myself the treatment of my anxiety through the use of similar drugs has made a marked improvement on my quality of life.

However these aren’t aspirin, they’re hard core, mood altering bastards which can easily send you even crazier, damage your health very seriously or make you suicidal. Their usage in the treatment of ADHD is off-label (by which I mean officially unproven) and one of the dangers lies in ceasing a dosage too quickly – would you trust even the most sensible 16 year old to take a pill at the same time every day? I wouldn’t.

I wonder how many parents, baffled by healthcare jargon and at the end of their tether in the face of an ADHD child has simply accepted a prescription for anti-psychotics? After all, the doc knows what he’s doing and the kid’s finally calming down and going to bed at night. I’ve certainly had days with my perfectly healthy children when I’d have done anything to shut them up.

Not all people have the ability or wherewithal to google their new drug, as I – a web-savvy type with years of experience in the industry – and my husband – an IT professional – do with every new prescription. In fact I wonder if everybody even reads the leaflet in the box.

I’ll tell you what worries me most about this news though, and about the fact that the government isn’t appearing concerned about the chemical coshing of patients outside of the elderly. It’s this:

At the age of 18, having just started uni and found myself struggling I went to the local GP in Cardiff. I walked in and was asked what the problem was.

“I think I need anti-depressants.”
“Right. Have you felt like this for long?”
“Since I started university.” (this was the november of my first year)

Without further question or hesitation I was prescribed Citalopram.

I wonder if I took one of kids to that same GP now and told him ‘I think he has ADHD,’ things would be any different.

*I’d be really interested to hear from anybody with children on mood stabilizers or to hear about other people’s experience of lazy prescriptions so do feel free to post here or message me on http://www.twitter.com/hoola

A Good Friend is Cheaper Than Therapy

I originally posted this on http://hoola-la.posterous.com  …

I read something this morning: ‘Bipolar people tend to say sorry a lot’.

It’s very true, I tend to apologise often, usually for things that are out of my control or weren’t my fault in the first place. I’m learning that not everything is my fault – it’s something that all bipolar people, or those with any depressive illness could do with learning but it just isn’t that easy when that frayed electrical connection in your brain is telling you that you just can’t get it right.

Being in a relationship, any kind of relationship, with a bipolar person is difficult, but I’ve been lucky enough to hang on to some amazing amigos; incredibly strong people who have stuck by me from way before my diagnosis, when there was no medical reason for my being a poor excuse for a friend. Those people know who they are and they continue to provide the most incredible support. I only hope that I’m now as good to them as they continue to be to me. I think I am – bipolar folk are kinda keen sometimes.

On the other hand I have made endless fleeting friendships, ones which fizzle out as quickly as they begin. The way these friendships end is hard, really hard. I can’t speak for others in my situation but I think I tend to shed more friends, more quickly than your average non-crazy. See, for most folk picking up the phone to say hi is an easy thing, as is walking in to a pub full of enthusiasm, sitting down and starting a conversation with somebody you know and love. Not so for somebody in a depressive cycle – talking to somebody you care about is harder than talking to a stranger – what they think matters, and you, well, in those moments you’re not good enough.

And a manic cycle? Those are the most misunderstood. Those times when I’m grumpy and snappish or the times that I’m making inappropriate comments and offending you? That’s all part of the mania. That’s the bit that’s hardest for the friends, the bit when the person you know isn’t the person you know, or when the person you thought you knew arrogantly thinks they know you too well, know that you’re judging them, talking about them behind their back, that something you’ve said meant far more than it did.

Mania. It all goes a bit Cyd

These are the times I lose friends, during those manic cycles. And I’m what they call Rapid Cycling, so it happens a lot.

Good friends though, the ones worth hanging on to like the life rafts, perhaps don’t even realise they are are the ones who ride the storm with you. Some read about bipolar, or they ask questions – they try to understand and it makes them more forgiving. Others will step back and let you ride it out yourself, they’re the ones that you know are there waiting in the wings to make things better, who know you well enough to know when your actions, your behaviour, is not ‘you’.

That’s not to say that bipolar is an excuse for being kind of a bitch. It really isn’t. I’ll still say sorry when I’m wrong, of course I will. And my bipolar doesn’t excuse every bad decision, mean comment or just plain horrid thing that I might do. But at the same time I’m not going to apologise for you, the friend who only wants to be a friend when the weather’s fair (is this weather analogy getting too much? I think it probably is).

I’ve noticed that those of us with depressive disorders tend to attract a certain type of person, for whom the term schadenfreude was obviously coined. Those are the worst ‘friends’ for a bipolar person to have, the ones for whom your problems make theirs seem less so. They’re the difficult ones though, the ones you convince yourself are the good, because they’re there during the bad times, sympathising and tutting in agreement, reporting back to other friends about your bad state of mind (perhaps with a glimmer of pride at being the one able to do so). You know what I’m getting at here…

Please understand that I’m not pointing the finger, I describe these people, these non-friends, without anybody in particular in mind. I’m well aware of the old ‘point one finger and three point back at you’ adage.

The friends I’ve lost I do feel sad for, I miss some of them terribly – indeed a few recent losses have been particularly hard, having the increased self-awareness that comes with diagnosis and still not understanding the way in which one can be dropped quite cruelly with no explanation (in this regard losing friendships is so much harder than being dumped don’t you think? At least the end of a relationship proper demands a certain degree of closure). However, the pain left behind by the lost friends is tempered by the knowledge that they weren’t good enough; that they didn’t take the time to understand, didn’t have the capacity to forgive or didn’t have the patience to press pause while I cycled in the wrong direction. It was them, it wasn’t me, that was ultimately not enough of a friend.

If you’re somebody I know, reading this now, you deserve a medal, possibly several. If you’re a stranger and you have a friend with bipolar (I can’t think why else you might be here) my only advice is to remember that while times are often bad, the good times are better because, in our own little way, those of us with bipolar are always trying, one way or another, to say we’re sorry.