Fitter, happier, more productive

I have a bad luck condition. Out of the blue bad luck. Sometimes it irks me when I see others abuse their precious health; in the same way that it irks me that I see folks fritter vast quantities of money away simply because they have something I don’t and I imagine, if I had it, I would use it more wisely.

However, there is something that irks me far far more than that. From BBC News, Blair calls for lifestyle change.

"Ten per cent of NHS resources today are used to treat diabetes," he said. "By 2010 the estimate is that this could double.

"That's 20 per cent of the entire resources of the NHS - and it's avoidable. Three quarters of diabetics are Type 2 diabetics, and two thirds of them have a disease which could be preventable with exercise, diet and more healthy choices."

This is irresponsible rhetoric for several reasons.

The first is that such statistics are non-existent. It is possible to speculate about proportions of cases of Type 2 which may have been preventable, but sorry, there is no way that we can apply real numbers to this. We don’t understand why some folks get diabetes and other don’t; this condition is of unknown aetiology. Aetiology, Mr Blair; look it up. All we know about are risk factors.

There is almost certainly a genetic predisposition going on with diabetes. In Type 2, age is a massive risk factor - all those irresponsible folks surviving past sixty-five. There are various illnesses, surgical procedures and medicinal regimes that increase your risk. And clearly, obesity is a major risk factor or more precisely, the amount of fatty tissue in the abdominal cavity is a major risk factor. And obesity is a complex disease in itself. My two friends who developed Type 2 diabetes in their thirties were already disabled, which undoubtedly influenced the millions of individual decisions they made which may or may not have contributed to getting sick - or took those decisions right out of their hands.

How exactly the proportionate cost of diabetes could double within three and a half years, I really don't know, but we'll pretend that makes perfect sense.

Obviously, the idea behind this rhetoric is either to scapegoat and stigmatise people with diabetes or it is to persuade currently healthy people to take steps to prevent themselves getting ill in the future. We'll give the guy the benefit of the doubt...

But which of these two messages is more likely to effect your own lifestyle choices?

A proportion of people with diabetes brought it on themselves because they eat too much and don’t get enough exercise.

or

You greatly heighten your risk of diabetes if you continue to eat as much as you're eating and don’t start getting more exercise.

The point about most of the risk-taking we do is that it is just that; risk-taking. Nobody knows for sure they are going to get ill if they take a particular course of action.

People calculate these risks using the information available to them as well as something called the optimistic bias; because actually, we’re not natural worriers and most people would rather think that they are not going to get sick. One of the ways that this operates is that we identify and emphasise the differences between ourselves and people who have acquired illness; those people got sick because they are more stupid, lazy, careless or selfish than I am; I will not get sick.

Talk about how other people have become ill, and even people in high-risk groups will disassociate themselves from those people; well, I am overweight, but those people who got sick must have been very overweight.

Of course, however much information we have about how to look after ourselves, the day we stop taking risks is the day we die. And I believe most of us do think about this and made our decisions accordingly. I know there are things I do to make myself feel better in the short term, but which cannot be doing me much good in the long term. Included in these are the five prescription items (none of this which is keeping me alive or benefitting my long term health) as well as various dietary stuff. Hopefully you will sympathise this because I am a tragic cripple, but I don't believe that I have more on my plate than other people; for me, it is pain and fatigue, for others it is stress, time constraints, poverty, etc., etc..

Of course some people make excuses for themselves (perhaps most of us), but since none of us can possibly determine this from the outside, we can’t make any judgement on individuals. And if we could, what could we do about it? We cannot physically prevent people from making bad choices. And we cannot punish people for their mistakes; chronic illness is disproportionate and entirely unjust as it is.

So to public health:

He argued that public health problems were "not, strictly speaking, public health problems at all".

"They are questions of individual lifestyle - obesity, smoking, alcohol abuse, diabetes, sexually transmitted disease," said Mr Blair.

"These are not epidemics in the epidemiological sense - they are the result of millions of individual decisions, at millions of points in time."

Some more words to look up. Epidemiology is the study of incidence and distribution of disease. Obesity (ICD-10 E65-68), alcoholism (ICD-10 F10-19), diabetes (ICD-10 E10-14) and the different varieties of sexually transmitted infections are all diseases. Statisticians might legitimately describe these things as endemic - or epidemic if the incidence is increasing. These can also be described as public health problems.

Smoking and “alcohol abuse” (if this phrase is taken to mean binge-drinking, for example) are indeed matters of individual lifestyle. The prevalence of these behaviours within our culture have an effect on our health. These can also be described as public health problems.

Poverty is also a major risk factor for almost every life-threatening disease there is. That can also be described as a public health problem. Just thought I would throw that in.

I know, I know. What is a Prime Minister to do?

First off, you can't blame sick people for being sick. Nobody chooses to be ill, certainly nobody deserves to be ill and the most anyone can say about almost any condition is that a person took a gamble and lost. There may have been quite compelling, even logical reasons for taking that gamble, or it might have been a very stupid thing to do. Every case is individual but nobody who is losing their sight through diabetes or gradually running out of oxygen because of a lifetime of smoking deserves to be told or treated as if they brought it on themselves.

Secondly - and perhaps more to the point - you can't blame the short-comings of the NHS on people who live less than healthy lifestyles. Talk to doctors, nurses and health-service managers - of course there will be exasperated by certain patients who refuse to mend their self-destructive ways, but my experience suggests that this won't be the first thing that comes to mind.

Thirdly, to improve the health of the nation...

Personally, I am in favour information which explains the precise relationship between cause and effect. Ideally, we would all get excellent human biology in schools and then everything else would be easy after that. Public information has tended to be ineffective because it fails to explain stuff; when a child is doing something naughty, it is sensible to say "Stop that at once!" but if you want the child to refrain from doing it again, you must explain why it is a bad idea.

More is perhaps less with public health information. Too much information, especially information which has the potential to cause worry, tends to confuse people. What's more, the message must be got across that people can get sick regardless of lifestyle. This week there has been a study to show that people with dark skin are more likely to die of skin cancer. One of the reasons for this may be that all this emphasis on the tan-craving pale folks who are more likely to get skin cancer may have lead us to believe that darker skins are not at any risk at all.

The NHS needs... uh, don't ask me.

All sorts of social problems, which can be affected by legislation, lead to unhealthy lifestyles. Poverty and social inequality being a very big deal - okay, so it is relative; few people are starving in this country, but then by the same token, there's nothing wrong with our nations health compared to most other parts of the world.

Otherwise, I think we should try to appreciate what we have got, but also appreciate its fragility. Illness and death are inevitable parts of life - the latter, defines what life is. If people value their lives and value their health, then they will act accordingly - or not, but since there's nothing any of us can sensibly do to coerce one another, that's something we'll just have to accept.

iTunes Quiz

I stole this from Timmargh These essential facts must be compiled!

How many songs: 1307

Sort by song title
First Song: 20th Century Boy – T-Rex
Last Song: Zombie – The Cranberries

Sort by time
Shortest Song: Her Majesty (from Abbey Road) – The Beatles, twenty-three seconds
Longest Song: Something In the Way – Nirvana, 20 minutes, 35 seconds

If that doesn’t count on account of the fact it has a long silent spell, the fifth movement of Beethoven’s 9th, eighteen minutes, ten seconds (which is better by a long way, pop-pickers). I have a lot of longish songs though; the average is four and a quarter minutes.

Sort by artist
First Artist: Abba
Last Artist: Wings

(I’m so, so, sorry - there is only one Wings song, and only one Abba... album).

Sort by album
First Album: Abbey Road – The Beatles
Last Album: Yellow Submarine – The Beatles

Top Three Most Played Songs:
1. All Along the Watchtower – Jimi Hendrix
2. Caravan – Van Morrison
3. Hard Headed Woman – Cat Stevens

Search:
“sex”, how many songs come up? 17, all of which are from Blood Sugar Sex Magik - Red Hot Chili Peppers
“death”, how many songs come up? 2 – Death or Glory (Clash) and Death of a Clown (Kinks). Timmargh had 22 - that chap worries me...
“love”, how many songs come up? 63.

The Gull who wanted to be God

I have been asleep a lot and am now feeling slightly less gruesome. I only long for an OFF switch for my mind, which when not asleep is just turning over such nonsense you'd never believe. Bleugh.

Managed to go to the doctor about the mole. Shouldn't be anything to worry about and when I am feeling a bit brighter I can go in and have it removed at the GP's surgery and they'll send it away to be looked at. But it's not a malignant melamine thingime, so it's not going to kill me any time soon. Waiting to be seen was a bit weird; every name that was called was something funny like Mike Blister, Earnest Grumbleweed, Jennifer Polyp. I thought it was just a coincidence, but then another equally bizarre name would be called. It did occur to me that I might have fallen asleep and be dreaming this, but if this was the case, I haven't woken up since.

We have another injured seagull in the yard. It is a juvenile and has a damaged wing and some sort of head injury. We left it alone as its parents are probably nearby and it's not in a terrible state. It was making pathetic noises all night and was watching the Tesco delivery man this morning, who declared that he studied seagulls at university and had a great passion for them.

This was a complete distraction. I mean, what was this man's story? What degree encompasses the study of seagulls? And how does such a character come to be delivering my groceries? I began to speculate about his accent and manner and by the time he had gone, I had determined his entire, highly dramatic life story.

However, looks like we need to call the seagull lady who came to our aid last time we had a sickly seagull.

For far more interesting animal stories, see Charles Dawson's moving chicken obituary and Marmiteboy's remarkable story which he descibes as the best fox related incident of my life so far. Oh and Miss Prism's informative study on whether one does indeed catch more flies with honey than with vinegar - and Bloggingmone's kitten experience. What is it with everyone and animals just now?

Don't think twice, it's all right.

It's helpful to know the limits of the ways in which your body can harm you.

You may fall asleep, but it doesn't matter. It doesn't matter if you have already slept most of the day. You will wake up again in time. And it doesn't matter if you wake up in the middle of the night or the middle of the day.

You may pass out, but you don't have too far to fall. The worst you can do is bruise. Once you're down, your blood pressure will right itself and you'll come round before too long.

You may throw up, but perhaps you need to. Perhaps you'll feel better.

You may be confused, but you are not going to make a fatal error. Nothing of great importance is depending on your clarity.

The pain is intense, but nothing is going to break or fall off or explode. And it will stay on the inside; no poisonous creature is going to burrow up through your skin and gnash its teeth at you.

You are not going to stop breathing. You will probably keep breathing for decades yet.

And pretty soon, you'll feel much, much better.

The Goldfish Who Knew Too Much

Too much stuff in my brain. Way too much stuff.

For one thing, there are all the things I need to do. I have never been able to remind myself that I am technically incapacitated; severely disabled and actually I don't have to do anything at all; I am a write-off. Should my health not improve, I will not be obliged to do a day's work for the rest of my life. Nonsense, of course, I have lots of things to do. These include;

Writing - this is my work work. I am amazed anyone still believes that I am writing a book, it is taking so long.

Blogging - this is not work, but is something I do to help me work, by getting this nonsense out of my system. In theory. In truth, I sometimes use all my energy to do this just so I can communicate.

Letters and e-mails - I am always owing them. Some of them I have reason to feel very bad about.

Household administration - this is very important, but so tedious. I am plain naughty about this if I am totally honest.

The Washing - this is not at all a big deal, but it is the one chore I am responsible for. I have been for years and years and yet I still run out of socks on a regular basis.

My projects - I began to list my projects out loud one day when I was feeling overwhelmed. I lied, naming only five. There are in fact about a dozen. Most of them are primarily for the benefit of other people. So my tardiness lets other people down, whether they know about it or not.

And this is before I have left the house ever. Meanwhile, there is everything else that is cluttering up my mind. Well, you get to see some of the crap that it comes up with, but there's also loads of other absolute nonsense; world events, petty domestic events, friends, Romans, preoccupations of all variety.

It is like having a computer with several programs opened at once, perhaps twenty or twenty-five. And someone's clicking Alt+Tab to navigate between the programs, staying briefly on one program before moving on to another. Sometimes it lingers for longer, but when it does, it's usually lingering on something you can't do anything with, a page you've read many times before. Meanwhile, you can see all the other programs on your Taskbar and are well aware that there are many many other things you ought to be doing.

And the really annoying thing is my capacity for stuff. I have a high IQ. I know a lot of stuff, so much useless nonsense about all sorts of subject matter which just pops out from nowhere. True things, facts, not just my weird and wonderful ideas about the world - which also pop out from nowhere. I am very good at Trivial Pursuit, but that's kind of telling isn't it, there's a clue in the title of that game. I know I am a bit obsessed with the fact but... three GCSEs. And this fact makes me think, maybe I should be trying to complete my education instead of faffing about writing books and blogging and doing all these petty artistic projects? Perhaps all this is actually a rather immature approach to life. Not that a degree would do me any good.

After all, I have very little energy. Currently, I am on adrenalin because I am awake at an hour I should not be awake. I spend so much time doing absolutely nothing.

And one o'clock in the morning, in case you are wondering, is hypochondria. No, I'm not a hypochondriac, I am just a sick person who hates going to the doctors. And because I hate going, I worry more than necessary when I get a new symptom. Just now isn't anything to do with my general health, but I have a suspicious mole. I have had a mole in that place for as long as I can remember, but it has grown somewhat, it is now multicoloured, no longer symmetrical and it itches. Not very big though; not as big as a pencil eraser and that's my excuse for inaction.

You see, it is in a personal place - it is on my side, close to my breast so I would have to take my bra off for the doctor to look at it. My doctor is male, so we would both have to hike to the nurse's room so a lady can be present. And then... it was humiliating enough last time, during The Case of the Ever-Expanding Bosom and it seems an awful lot of fuss over a mole. Especially as I have never knowingly exposed that area of my body to sunlight.

And so, I've just been worrying about it, hoping that it will go away. But tonight I had to get out of bed and come on-line in order to dismiss my fears - which of course I didn't. Bugger. I know of course that even if I have a little cancer, it is unlikely to be a great problem at this stage - I'm not actually worried about that one little bit, just worried that I really ought to face the misery of trekking to the doctors and taking off my clothes. Because to do otherwise would be irresponsible, even if it is almost certainly nothing.

Oh pathetic person, go to bed.

Mirror in the bathroom, recompense

[Self pitying post removed - too much whinging even by my standards]

I've not been well.

Afternoon Tea at the Wits End Café

A slight lie, but it made for a good title. I thought we were going to the Wits End Café at Sandsend. In the end we went to the Sandside Café which is at the other end of the village. Same difference; both very nice, although the Wits End is recommended if you come in the winter on account of the fact that it is (a) open and (b) they have a wood-burning stove and you can sit watching the dark skies and raging seas, drinking hot chocolate and feeling rather cosy.

My friend P and I got a taxi to Sandsend, the next village up the coast from Whitby and a very beautiful place indeed. We had apple pie and cream (and tea, obviously) at the Sandside Café and then strolled onto the beach.

Here are the two views, left and right (East and West) from where we were. You can see Whitby pier and the Abbey on the West Cliff. There were lots of people on the beach today, most of them turning rather red.



The sweetest thing we saw was a tiny little golden-haired cherub who was paddling in the brook with the ducks - he was little bigger than a duck himself. Obviously, he didn't get his photograph taken.

We went down to the beach and made our way to the water's edge bit by bit, having a sit down every ten yards or so. Then I had to do a dance in the sea; the first time I've set foot in the sea for some considerable time. P refused to join me on account of his delicate constitution and insistence that "That's nothing but freshly melted polar icecaps!"

You may notice that the horizon is on the wonk. This is a natural phenomenon exclusive to this stretch of coastline.

You may also observe that yes, this was the hottest July day since 1911 and yes, it was 36°C even in parts of North Yorkshire, and yes, I did remain modestly dressed. This is because I am a reptile and I was still a bit cold, even today.

On the subject of reptiles, our coast here is famous for its wealth of ancient fossils. Here is an Ichthyosaur what we uncovered on the beach. It swam in the sea here 118 million years ago. It still looks rather jolly after all these millennia.

I hadn't been out of the house (apart from to the doctor's) for five and a half weeks, so this was a very welcome excursion. And I didn't feel sick at all today. I began to doze on the beach but at that point we decided to head back. A lovely afternoon.

Ten Things

1. Since last report, the menacing spider has appeared twice on the inside of skirts as I have been pulling them on and once underneath a blanket I was pulling over my legs. I kid you not; this spider is out to get me.

2. I don't know how but I have injured my foot whilst asleep and it is now rather uncomfortable and stuck in a sort of twisted position. Being just a few paces behind the latest fashion, I have decided I have a fractured metatarsal.

3. On the plus side, the pills I've got for my nausea seem to be working, along with the ginger tea and other recommendations gratefully received. The stuff I have is called, uh... ranitidine? I asked the doctor what Mount Everest was like and he said, "High."

4. James Medhurst uses Big Brother to illustrate the argument for proportional representation.

5. Disability Nation have made massive improvements to their website. Their most recent podcast was about being gay and disabled, featuring someone from BFLAG - Blind Friends of Lesbians and Gays.

6. Guess what this picture on the right is before you click on it. Were you even in the right ball-park? I need reassurance (in other words, say you knew exactly).

7. I like the warm weather. It is warm. I don't have to wear socks twenty-four hours a day and I don't have to worry about how I'm going to get my hair dry when I wash it.

8. I like being grown-up; yesterday we had Ben & Jerry's Cherry Garcia Frozen Yoghurt with some Yorkshire Puddings for lunch. Another advantage of being grown-up is that you can make a den with furniture and blankets and stay in it all day. Also, people take you more and more seriously whilst you take yourself less and less seriously. Childhood was crap in comparison.

9. I still haven't finished about the Oddballs, but I am too tired today (don't cheer!).

10. I finally receieved Murderball from the DVD rental people, but I really couldn't be bothered with it so I sent it back unwatched. I now feel like a traitor to the cause. But I haven't actually heard anything good about it apart from the fact that it wasn't deeply patronising. Hardly a recommendation.

Poetry Corner - Impossible! (a villanelle)

A brief interlude from all that nonsense about Oddballs and an unwelcome return for Poetry Corner. This time, I am attempting to advance the cause of terrible angst-ridden poetry by promoting the villanelle. If you don’t know what a villanelle is, click here.

The great thing about writing bad poetry within such rigid constraints is that even if you started writing something with feeling, the pain is quickly dispersed by the form – whatever you do, it is going to sound ridiculous. I recommend that any poetry written between the ages of 13 and 18 should be written in this form

I was feeling rather overwhelmed with everything I need to do, want to do and feel compelled to do at the moment, but now I am much calmer.


Impossible!

I hope somehow I shall prevail,
O'er everything that I must do
Impossible! I’m bound to fail!

Try as I might, to no avail,
My breaking point is overdue.
I hope somehow I shall prevail.

Weak my mind and body frail
Yet maybe I can stumble through?
Impossible! I’m bound to fail!

Slow and steady, like a snail,
A viscous crunch beneath your shoe.
I hope somehow I shall prevail.

Perhaps if I can just exhale,
My face won't be so purplish-blue?
Impossible! I’m bound to fail!

Everything I try to do;
My life, this poem; a pile of poo!
I hope somehow I shall prevail.
Impossible! I’m bound to fail!


Previous Poetry Corners: Ode to my TENS machine/ I just want my body to work/ My fair-weather friend/ St. Valentine's Day Massacre

How To Be A Proper Oddball #2

Since I am going off on one, go check this out first.

I have harped on before about the value of the mutants; deviation being a necessary condition for progress, whether in evolutionary terms or in any area of human thought and experience. If nobody ever strays from beaten track, then there will only ever be one road, heading in one direction. Of course oddness is not a sufficient condition for greatness – some mutations, like freckles, make little difference to anything and others can be detrimental; some oddballs only demonstrate how not to go about things.

However, without some deviation, we never make any progress. People who achieve great things are necessarily extraordinary, usually in more than one aspect of their abilities and behaviours.

Which bares the question, why do we push difference out to the edge, why do we discourage variation when it is so very good for us? I guess in terms of the way we have run our lives for the last several hundred years, deviation has generally caused a lot of trouble to the individual. Most people have been bound to a particular life according to where they happened to be born and who they happened to be born to.

If you think about small, self-sufficient communities, everyone would have to play a different role and do what they’re best at. But when you have large-scale agriculture or industry, you end up with a large proportion of people doing the same thing, regardless of their individual talents and temperaments. Well, it’s easier that way, you may well say.

I’m not sure it is easier for the vast majority of people involved in such systems, where there is minimal flexibility between roles. Okay, so any community – whether a group of four people or the population of the planet, has to delegate. However, as Charles Dawson recently recalled; a hundred years ago ordinary people in this country were effectively owned by their employers. And today, very much of the food we consume in this country, along with our clothes, the components of our technology – very much of everything we’ve got is supplied by people who are living with similarly few opportunities.

People who may have the temperaments and abilities of great artists or scientists may have no choice but to be harvesting your coffee beans or taking up arms for the coltan in your mobile phone. Not that I want anyone to feel bad about this; we rarely have that information, and what information we do have is muddled in with all the other pieces of information about what is good or bad for the non-human environment, for animal welfare, let alone our own health.

Which is a rather big tangent, I know. But suffice to say that this is a bad situation for all of us. People say, but someone has to do the dirty work, the menial tasks, the boring shit and this is quite true. Only why should this be determined by accident of birth (or uh, the colour of a person’s skin)? And why must some of the most necessary of work be conducted under such poor conditions? It is no better that we have entire countries bound in the service of other countries than it was when most of us were serfs bound in the service of our masters.

However, that’s another three thousand, four hundred and fifty-two blog entries…

Trouble is that because of the legacy of serfdom (for lack of a better, all-encompassing word), because of the legacy of communities where there was really only one job and one lifestyle young people could contemplate, I believe we fear and discourage deviation – we discourage people from harnessing their talents and temperaments where that might mean living life in a completely different way. And yet in the West, we are the people with the greatest opportunities to experiment with living. We dishonour the entire world when we make choices in the name of normality. And people do, all the time. People aspire to it.

I haven't finished yet, I'm afraid. I'm close though.

How To Be A Proper Oddball #1

The thing that got me thinking about this was an article about Albert Camus’ The Outsider on the BBC News website. This article was deeply annoying on so many levels. The Outsider (at least the translation I remember reading) wasn’t about anyone breaking off from society; the anti-hero was very much part of the working week, merrily colluding with the misogyny and racism of the society in which he lived, and only fell foul of it all when he committed murder. He was only an outsider in so far that he appeared to be largely incapable of lying about his feelings – which is very interesting of course and makes it worthy of study – but that’s not the same as being a Rebel without a Cause.

Even Rebel without a Cause (and similar) was only about the socially sanctioned period of rebellion allowed to young men in Western society - which, being socially sanctioned, is no kind of rebellion at all (okay, so Rebel was one of the first honest presentations of this and one specific to that particular era). During this time, young men have long been expected to experiment with alcohol, sex and latterly the internal combustion engine, before they are obliged to calm down and get on with life. Young women do have a go of course, but this is generally considered a great social ill (heaven forfend, we might end up looking like wrinkly old prunes).

But true non-conformity doesn’t involve intoxication or murder, both of which represent a wasted opportunity. True non-conformity involves screwing up a set of rules, but then rewriting them and getting on with life in a different way. And all this begins with a difference in aspiration.

A real tyranny we have in our culture is the idea that we all want the same things and should want the same things. It makes perfect sense that we should have common values, a shared morality, but that’s another issue. In fact, when I have met people of questionable virtue, it is the common aspiration which is used as an excuse for selfishness; “I want the same things as everyone else, but I don’t have them and that’s not fair. That's why I am such an arsehole.”

Not just material things, but the whole magical package people think of as normality. In the UK, most people own their home, most people are married and most people have children. Most people work for someone else as part of a big organisation. I speculate that most people work in an office environment. For most people, television is their number one past-time. And most households run at least one car.

There are also a whole heap of things which many people consider normal, whether or not they are accessible to most of us; foreign holidays, a very specific version of Christmas, the lavish wedding, the Christian funeral, the latest mobile phone and so on.

There is nothing wrong with any of this; some of it makes perfect sense. Only none of these things are necessary or sufficient conditions for a happy or fulfilling life. And yet, say you want something rather different and you are an oddball.

For example, most people throughout human history have reproduced, which is great. We have it drummed into us from an early age that everyone wants children, everyone must have children and those who fail to are selfish, immature or cold and condemned to a fundamentally empty life.

But throughout all of human history, a proportion of people in any given society have not had children, whether through active choice or whether through infertility, celibacy or homosexuality. In some cases, this has freed these folks up to make extraordinary contributions to the sum of human knowledge; a disproportional number of Great Minds in history, whether in science, politics, philosophy or the arts happen to have been childless. Uh, quick brainstorm for examples:

Jane Austen, Simone de Beauvoir, Beethoven, all three Brontë sisters, Lord Byron, Lewis Carroll , Descartes, Gallileo, Handel, Hendrix, David Hume, D H Lawrence, Henry James, Samuel Johnson, Christopher Marlowe, Michaelangelo, JS Mill, Issac Newton, Fred Nietzsche, Florence Nightingale, Alfred Nobel, Alexander Pope, JP Sartre, Tschaikovsky, Alan Turing, Van Gogh, Leonardo Da Vinci, Virginia Woolf, the Wright Brothers…

I hope that's all correct. There are loads more, I am sure - and I didn't include Buddha, Jesus or Socrates on account of the fact that we don't really know enough about them. So procreation is by no means imperative for living a worthwhile or happy life. And having children is of course the most sensible social convention we have. It is a really good thing that most people do want to have children.

However, most of our shared aspirations are merely based how things happen to be for people right now; like home-ownership and our relationship to work. A great deal of it comes from the way life is being sold to us, by governments and businesses. No great conspiracy, but so long as everyone wants (and fears) the same things, these entities know exactly how to make money and win votes. And our parents naturally want us to have lives rather like their own because they know how to guide us through that, having been there themselves.

But I'm not sure this does us a great deal of good, as individuals with a great variety of talents and temperaments. It might be relatively safe, the path of least resistance, but does it make us happy or use each of us to the best of our abilities? And is it is even sustainable?

This was more than one half hour period and I'm going to run out of time today so I'll continue this tomorrow (don't groan - was that a groan? Who groaned?!!). No, I'm not yet sure what I'm getting at either.

Turn and Face the Strain

Well today I decided to face my problem. As any keen observer will have noticed, a lot of the entries on this blog are me having a good old whinge about personal circumstances, cunningly disguised as some wider point about disability or certain sorts of impairment. Today I am openly whinging. Well, not exactly whinging, as I am looking towards a solution.

My health has picked up a bit. I am shamefully ungrateful for this, not because I am not pleased to be better, but because it doesn’t feel very much better and it is not nearly better enough. But, for example, I have managed to sustain a lower dose of opiate painkiller for a couple of months now. I'm wondering if I can drop my NSAIDS completely. Bad days I need more pain-relief, but that’s okay. I am spending fewer days entirely in bed and just now, and by a slight majority, most days I’m not actually falling asleep during daylight hours.

It’s really not enough, I don’t know why, considering what a hard time I had last winter, I can’t appreciate being able to do a little bit of something everyday – sometimes quite a lot of something all considered. But I don’t. I am still immensely frustrated. I have no serenity whatsoever. I know I cope better than some people, because I have known some people who really truly collapse in on themselves. But I also know that other people have carrying far greater burdens than my own without complaint.

Anyway, with one thing or another (I am short of time, as you'll see), I have decided to be more proactive. I am seeing how much I can achieve with half an hour's activity to half an hour's rest. Rest being proper, silent, eyes closed, bed rest. Activity being anything at all, including listening to radio programmes, watching DVDs and other activities other people might consider entirely passive.

I know this isn't practical to sustain everyday, and only ten minutes into my first rest period today [...] came into the bedroom and started talking to me about what we're going to have for lunch, but this is what I am doing. Wish me luck.

And that's half an hour's worth so I'm back to bed. Goes quick, doesn't it?

By the way, having fiddled with my template, can everyone still read everything okay? I realise that some of my older posts have been rendered in some hideously huge font, but do let me know if anything has gone really weird.

Aaaagh!!!!

I was trying to write a post this evening, but instead I am going to do a little scream. Don't worry, there is nothing of great note to scream about.

Aaaagh!!!

There's a Peanuts cartoon where Linus says, "No problem is so big or so complicated that it can't be run away from." (It's about two thirds of the way through A kiss on the nose turns anger aside if you're interested. In fact, I think Richard Bach misquoted it in Illusions - put it down to Charlie Brown, but it was definitely Linus, I am looking at it right now).

Charlie Brown says, "What if everyone was like you? What if we all ran away from our problems? Huh? What then? What if everyone in the whole world suddenly decided to run away from his problems?" (over three frames, you understand).

"Well," says Linus, "at least we'd all be running in the same direction!"

Today, I am with Linus. I'm outta here.

Timewasting Links

Via The Wepben Blog check out Dictionaraoke; 100 songs as sung by pronunciation tools.

Somebody has had a lot of time on their hands. My personal favourite was Depeche Mode's Enjoy the Silence, but then that is one of my favourite songs of all time anyway. The best one that everyone knows was probably Anarchy in the UK.

Via Fetch Me My Axe, check out The Angry White Boy Polka (although persons with more refined musical taste are unlikely to know any of the performers there satirised).

Finally, try your hand at forging a Jackson Pollock - may not be as hard as you always imagined. That was a random find.

If you notice anything odd happening to my fonts, this is because I have been reading a book all about CSS (uh... Cascading Style Sheets) and now think I can transform my template without any glitches. All digits crossed.

The dish ran away with the spoon

Ballastexistenz wrote this excellent expansion on Spoon Theory. If you’re not aware of what Spoon Theory is, the original can be found here (see also Beer Theory). Spoon Theory is basically the idea that those of us with limited energy have so many spoons we can use every day, and every single activity uses up so many spoons. The things which other people take for granted like getting dressed or washed or making a snack all use up spoons. And once you have run out, you have run out, so life with these sorts of impairments necessitates careful planning and a constant reassessment of activity and energy levels.

Do go read what Ballastexistenz wrote about it. Perhaps the most interesting thing I found in reading this piece was the amount of empathy I had for Ballastexistenz’s experience as an autistic person, struggling with her interactions with other people.

I am not autistic, but I believe that dealing with other people is, without a doubt, the most exhausting thing that all of us are obliged to do on a regular basis. A friend of mine is severely affected with my condition and at one point, was trying to build up her mental stamina. She did this by having a family member come into her bedroom, sit down and remain in the room, in silence, for fifteen minutes at a time. When I first heard this I was a little baffled. How can the mere presence of another human being - especially one you know well - test your stamina?

Fortunately, I have never been that sick. And it wasn't really until I read Ballastexistenz's post that it made complete sense. My friend (so far as I know) isn't autistic either, but as soon as another human being enters the room, there is mental activity taking place. For myself and most other people, this activity is too slight to pose any sort of challenge.

Please note, I'm not comparing one sort of condition with another, I'm not saying, when we're really exhausted, we're all a little bit autistic or any such nonsense, only that these particular issues can be similarly challenging to different people for very different reasons.

Another comment I heard recently from a person with my condition was, "I always know when someone has the Dreaded Lurgy - you can tell just by looking at them. You can tell if they have been misdiagnosed, as well. It's a certain expression, a glazed look; folks with the Dreaded Lurgy don't ever make eye-contact with you."

Now I had to disagree because I do make eye-contact with people. But I am conscious of this fact because it is often quite an effort. And it is very difficult to maintain eye contact at the same time as speaking or listening. For a long time, I thought this was just me, because I don't get a whole heap of practice; I haven't been required to make eye-contact with anyone other than [...] in the last ...four weeks, because I haven't seen anyone else.

But reading Ballexistenz's post and thinking of discussions I have had with other people who have conditions characterised by fatigue, I begin to think that perhaps a lot of problems that I have put down to inexperience, ineptitude and misanthropy may be more to do with the challenges of limited energy.

In psychometric tests, I usually land just left of the middle on the introversion-extroversion spectrum; I am quite happy in my own company, but I am really very interested in people. In truth, much of the time by myself I spend thinking about other people; the people I care about, social and political issues or else the characters in my book.

However, the more tired I am, the more introverted my behaviour, the more social niceties (for lack of a better phrase) become a tremendous effort.

For example, my parents have been decorating their living room. This has been a big task because they opened out the structural fireplace (they thought it was an inglenook; it wasn't, but it has that effect). There was also a long saga involving which particular shade of yellow they were going to paint the walls with - you know the sort of thing.

Now I know how to have these conversations. For my Mum, it is news and it is my job to receive this news with interest. When I am less tired, this is no problem whatsoever:

"We've changed our mind about the paint again," Mum says.

"Oh really?"

"Yes, we've decided to go for a sunshine yellow as opposed to a canary yellow."

"Oh right, because I did think that the canary yellow might turn out to be a bit too yellow."

"That's right, it was. We had opened one of the paint tins but they shop will exchange the others."

"Well that's good."

and so on. This is no problem; I'm not especially interested, but I don't find it boring or tedious or difficult in anyway. This is a normal 'healthy' conversation. Another person would be better at it than I; for example, my sister is quite interested in the subject of paint, so would probably have more insightful comments to offer.

When I am more tired, it is far more difficult. The conversation goes:

"We've changed our mind about the paint again."

Complete silence from my end. I really can't think what to say. What am I being asked to say? I am entirely indifferent to this news. What am I supposed to feel about this change of heart?

"Are you still there?" Mum asks.

"Yes."

"We've decided to go for a sunshine yellow as opposed to a canary yellow."

Complete silence again. I'm preoccupied by what difference there might possibly be between these two colours.

"Are you all right?" Mum asks. "I'm not boring you am I?"

And I'm never so tired to forget the Golden Rule; do not allow your mother to think you are bored. Apart from anything else, it's not boredom. It is the lack of an opinion combined with the fatigue-induced inability to... bullshit would be too strong a verb. I suppose it is a fatigue-induced inability to be nice.

All this can make me seem rather anti-social. I am not naturally good at small talk, but in this state I resent people talking to me about nothing because I am having to work so hard to process their nothingness. I become very discriminating about those individuals upon whom I choose to spend my energy.

This is something which is met with very little understanding, because it is universally acknowledged that social activity, spending time with other people, meeting new people is good for you. And it is, it really is - I often long to be around other people. Only, I think it would help to acknowledge the fact that it is also very costly; in far more ways that the practical effort of getting somewhere and staying upright for the duration.

Anyway, I am rambling a bit (and running out of spoons) but I wanted to post something on this while Ballastexistenz's post was still fresh.

I was feeling kind of seasick

The nausea is not psychosomatic; it has been getting gradually worse all week. I guess it must be the Ibuprofen eating away my insides again so I have tried to cut down and made a doctor's appointment. At least this time I have a good idea what's going on; last time this happened, it coincided with menstrual mayhem and I thought I might be pregnant.

The nausea rendered me incapable of picking up the slug I found in the kitchen last night. I hoped it was dead and, since I thought I would throw up if I touched it, I decided to leave it and deal with it in the morning. This morning it was gone. I feel extremely pathetic about this; that and the spider.

In other news, I was looking for a document of novel notes this morning and having forgotten its title I searched my computer for Word documents containing the word stomach - thinking that there would only be one; I can't think of stomachs coming up in very much of anything I have written. There are 43 Word documents on my computer containing the word stomach. 43. This fact also made me want to throw up.

I have written way too many words and they're almost all complete and utter nonsense. I think my laptop's recent problems may be due to the machine spontaneously evolving some sort of digital version of consciousness, developing aesthetic taste and then deciding its life wasn't worth living.

Blackcurrant-liquorices. That is the most effective treatment for nausea I have come up with. The doctor will give me pills that do the job properly, but if anyone has any tips to survive until then, would be most appreciated.

London Calling

Today is the first anniversary of the 7th July attacks in London.

I pointed to it at the time, but James Medhurst gave a powerful account of trying to get to work that day. Vaughan was articulate as ever and later got stuck on the Tube outside Stockwell Station, where Jean Charles de Menzes was mistaken for a suicide bomber and shot dead. Damon blogged as the news began to come in and described his experiences travelling by Tube in the subsequent weeks.

Since I have nothing useful to say on the subject and didn't really at the time, I shall direct you to this, probably one of my most sombre and reasoned responses to world events. Or perhaps not.

Loaded with Beautiful Vulnerability

This blog entry contains some strong sexual references. I promise after this I will try not to write anything of a sexual nature for at least the rest of the month. Honestly, I’m not obsessed. The orchids have nothing to do with anything; I just thought the text needed breaking up.

Wheelchair Dancer has been discussing disability-fetishism following the news that Encarna Conde, a wheelchair user and disability campaigner, has starred in a pornographic movie entitled Breaking Barriers. Wheelchair Dancer's first post on the subject is here, her second here. Blue at The Gimp Parade has also posted about disabled people in porn. These discussions throw up a great number of issues, but I wanted to write a bit about the sexual practice of pretending and what this says about our culture’s deep-seated attitudes towards disability.

Please note, I do not wish to criticise other people’s kinks, at all; I don’t think people really choose what turns them on and certainly folks ought not to feel ashamed of thoughts and practices which harm no-one. But like many aspects of our sexual make-up there are cultural influences on these things which are interesting and which can have an effect the rest of us.

I am aware that often people are excited by the mere existence of a taboo; in a culture where disability paraphernalia is generally symbols of weakness and indignity, perhaps their is some perverse thrill from, for example, having sex in a wheelchair.

Another thing going on is perhaps partly physiological. We know that stopping the body doing what it wants to do, whether through conscious effort or some practical restraint increases physical tension and can both intensify and prolong events. A nature example of this is that some men with certain spinal injuries cannot ejaculate fully, and so experience multiple-orgasms by default.

A quick glance in the window of any Adult emporium suggests that folks have many different ways of going about this sort of thing; some with pink fluffy handcuffs, others with really rather sinister looking equipment. Maybe for some people, it is more comfortable to sit in a wheelchair and pretend your legs are paralysed than to be tied up (or whatever else).

Physical restriction also negates performance anxiety, thus reducing inhibition. Some people are loaded with guilt or nerves and like to be lead or looked after. Other people are the other way inclined; whilst I believe that very few people wish to dominate their lovers, some people like to maintain control, to do the giving, as it were.

Now, disability ought not to have anything to do with this. But folks do dress up in all sorts of daft costumes in order to symbolise a certain power dynamic, all based on some exaggerated and highly-sexualised cultural stereotype; the nurse, the fireman, the french-maid, the police officer etc, each symbolising a specific role. The disabled person is just another (if far more obscure) concept – apparently a passive and helpless one. And as Wheelchair Dancer says, there’s nothing wrong with sexual passivity per se; the association is ...discomforting.

But again, I don’t think this does us a great deal of harm; as disabled people, we are not obliged to conform with this and people who do are just playing a private game which works for them. What's more, I don’t think this is born out of an idea relating specifically to our sex lives, but merely our overall role in society. And that is the problem; not the fact that people take these ideas into the bedroom.

It is also the far more interesting bit. In particular, a visible non-subjective symbol of impairment legitimises all sorts of psychological and social concessions in the wider world. From the little reading I have done, the most appealing impairments seem to be amputation and paralysis; these are things that everyone recognises, understands and that are entirely immovable; you don't have good days and bad days and nothing is likely to change.

My own experience is that coping with physical fragility and pain without the obvious and undisputed symbolism of a wheelchair or walking stick is extreme hard work. People walk into you and lose patience if you are slow or disorientated; strangers have high expectations of you and you find yourself destined to disappoint and baffle them.

Okay, so personally I would much prefer pain-free bipedal mobility and perhaps most significantly, I dislike the attention I attract as a wheelchair-user; I don’t like being fussed over or looked after and I would very much like the option of blending into the background. However, this kind of attention, sympathy and gentle-handling may well be appealing to some, even those whose fragility and pain is on a purely emotional level.

In this society, we’re not very kind to one another and unless you have a sign tattooed to your forehead reading PLEASE BE GENTLE WITH ME, folks will assume that you are just as strong, confident and capable as they are. Sit in a wheelchair and generally (though not universally) people will be kinder to you, more likely to speak to you and ask if there is anything they can do to help.

But, nobody should need to be in a wheelchair in order to be treated with respect and uh… tenderness isn’t exactly the right word, but I think you know what I am getting at. If we all recognised one another’s needs and vulnerabilities, then perhaps the need would pretend would cease?

At the same time, wheelchairs users, and other people with visible impairments should not be seen as necessarily vulnerable and passive. Apart from anything else, some of us are complete gits.

Hmm, all about the houses on this one. Hope it makes at least some sense.

Paranoid Android

Last week I realised I was beginning to slip into paranoia. This week I read that one in three people in the UK regularly experience paranoid thoughts. This is nonsense.

They offer an example of a paranoid thought:

Greg, 19, student: "If I'm with a friend and someone rings them on their mobile and they tell the caller they're with me, well if the caller then says something I can't hear and the friend I'm with laughs, I always think that the person on the other end of the phone said something horrible about me."

Well, duh. Of course you do. If they laughed and didn’t go on to explain why they had laughed, they positively invited you to think that. Whether or not something horrible was being said about you, your friend has appalling manners and should be abandoned.

We are all concerned about what other people think of us and we know that other people talk about us because we talk about other people. We are social animals; we confuse and fascinate one another. What people say about us behind our backs has to remain a mystery and the possibility that we are being laughed cannot ever be ruled out. We all know this, we all suspect this under certain circumstances and, in the above example, this is a fairly rational hypothesis. Of course, some people will care much more than others, but it wouldn't make them paranoid

Paranoia is defined as a delusional way of thinking; para meaning beyond (noos: mind). Granted, we all use this word to apply to fairly minor niggles, just as we say we feel depressed because it is raining or that it has been manic in the supermarket. However, whilst psychologists need to make a living, using this word to refer to ordinary thought patterns, thus pathologising the entire human race, is somewhat irresponsible.

Crucially, it means that when people are in serious trouble, other people are less likely to understand or appreciate the seriousness of the situation. Plus it supports the idea that all mental distress is an illness which needs to be (and can be) addressed and cured. Mental distress is part of the human situation.

Now I am not a socially confident person at all. Much of the time, I get really very worried about causing offence to people or making people feel uncomfortable in some way shape or form. This is notparanoia; this is low confidence and general social ineptitude – mostly but not entirely the result of chronic illness and the resulting isolation and inexperience. My experiences don't even stretch as far as Social Anxiety Disorder; they don't stop me doing stuff or engaging with other people.

The week before last, one event caused me to feel insecure about other people I care about. This was not paranoia either; that was a fairly normal reaction to a distressing and surprising event. But last week it took on a different shape, I was without my laptop and so with far fewer distractions to take me out of myself and it got very silly, to the point that I was feeling extremely nauseous (which I assume to be psychosomatic as it has since gone away) and becoming somewhat preoccupied with bad thoughts.

It was only a couple of bad days. I have a disease of the nervous system and this boat doesn't take much to rock it. Brief spells of this kind of thing do not qualify me as having a mental illness, but I would use the word paranoia to describe this sort of thing. These sort of experiences I have had myself would include being close to certain that:

• Something I have said or done in innocence has caused major upset to someone even though there is no reason to suggest this person is upset.
  

• People are going to find out, or have already found out, about personal and private things in my life - usually things I would be deeply ashamed about.
  

• Something I have said or done has lead or will lead directly to something very bad happening to someone I care about. It was about that level last week.

• I have supernatural powers which make bad things happen to other people, or bring about major disasters in the world.

• My thoughts are leaking out of my head for all to see.

I could be more specific, but it would be mortifying. It sounds crazy, but it is. That’s the point. These kind of thoughts are evidence for my having been somewhat unhinged at the time. Fortunately, in my case, like hallucinations and other weird experiences, my equilibrium is rather fragile, but quickly re-establishes itself.

The most extreme example of paranoia I came across in someone else was when I visited my friend, who has Borderline Personality Disorder, after the Soham murder victims had disappeared. Events in Soham had happened to coincide with a bad spell for him. This was before we knew for certain these two little girls were dead, and their faces were on the news all day and on the front of every newspaper.

My friend is not sexually attracted to children and anyway, he is gay. He wouldn’t hurt a fly, lives the other end of the country from Soham and has no independent transport. And yet he said to me; “What if I killed those little girls? What if I did it for some reason or other, but have blocked out the memory?”

That is paranoia. I remember it well because I was stunned. However, part of the problem with such thoughts is they are so scary you keep them to yourself. Once my friend had said this out loud and we had gone through all the ways in which it was absolutely impossible, he was laughing at the silliness of the idea.

Uh, I am about to be kicked off the computer so no time to round up with any sort of conclusion.