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Thursday 11 December 2014

I am like Celia Johnson only with a longer dick.

At least I assume so. Sadly Celia didn't leave measurements.

OK i know that was a little cryptic. Think Brief Encounter. That woman spent an extraordinary amount of time lurking around in cafes near transport hubs. And so, in general, do I.
An aspect of zebra travel that is little remarked upon is that getting anywhere involves help, wheels and waiting. Today I am camped in a small cafe in Limerick called Greenes. This isnt a travelog but I can recommend it. Basic but freindly and warm. Menu not fancy but filling and staff very very helpful with trays and stuff.  I am in the quaint town of five line comic poem because of a conference i attended with a colleague, herein known as the Dark Mistress. (NB she is not in any way my mistress nor likely to be). We had time to kill pre plane so she has gone shopping and I am minding the cases because shopping was not on. I subluxed both my shoulders in the shower this morning (one having a wank and the other picking up the soap) and then popped my hip whilst walking from lne venue to the other so although xmas shopping would be good i cannot really do it. So I am waiting like Celia, enjoying tea and idly wondering if Leslie Loward is going to turn up.
Travelling is the same. Given my level of frequent flier i get to go jnto the lounge at aiports so when i get disabled assistance I get taken there pre gate. Previousky i would be take to a cafe. You have to insist on this at check in or they just leave you waiting at an assembly point and rush you through at the last minute. If you want airport shops or a bite to eat insist on the right to Celia.
Trains are the same. A lot of the disabled seating is in cafes.
I do sometimes miss the ability to just wander around. It made life much easier.
Also I wish they would stop playing Rachmaninovs second piano concerto.

Wednesday 10 December 2014

The little things mean a lot.

I seem always to be writing about drugs . They are a large part of modern life after all. About 50% of men in the U.K. are taking a prescription drug at any one time after all so I suppose we should be used to it. My family has the kind of D.N.A that is issued as a karmic punishment beating for soulswho shagged sacred cattle in a previous life and so I have
been taking BP. meds since I was 30.
But since the onset of EDS my pharmacy visits have involved a binbag.
Mostly I collect painkillers of One kind or another. lndomethacin to stop inflammation , pregabalin to stop me Killing myself and hurting too badly, and Tramadol. Tramadol SR. to keep a lid on thing s and quck acting for breakthrough pain. Readers will know that my GP. decided to cancel this last.one recently. Well I wrote him a forceful email not quite stating that I would ha ve him before an ethics comittee anl he backed down claiming a minor clerical error.
Hmmm
That minor error had me in agony of fear over what the hell I would do if he cut me off. These things are Not minor to those of us who depend on them. Other clerical errors like that have left me suicidal.
Everyone is human but dr. you need to see what these things mean. l, had given 3 previous polite queries about that prescription and it was only when I got heavy that it was changed. clerical error my arse.

G .

Tuesday 9 December 2014

By Flying Boat to the World's End

So here we go again, the delights of air travel for the zebra traveller. I am sure I can think of some sooner or later.
This is my second flight in two days and so I am more than usually Jaded by the whole lovely experience . First of all there is the shear distance involved. I don't mean in terms of air miles. After all I am often back and forth to Korea which is rather more distant. It's that the twats who design airports care more about fitting In shop frontage than they do about making the airport easy to use for the poor cunts trapped inside.
today I am flying via Heathrow to Shannon. This is 2 flights because no-One in their right mind would fly Zurich to Shannon direct. Shannon is a dinosaur lefr over from the cold war. In those days transatlantic flights could only Just make it across the pond and needed to stop off on the western Irish coast for fuel and potatoes. It you think that Is quaint Just wait. If Russia continues to play silly buggers then flights unable to use the northern great circle may have to do this again. Anyway Shannon remains the only major airport with a flying boat dock.
the last time I was out here l was only Just married. Now I am back for a tiny provincial conference 1 somehow got roped into doing.
The last few days have been rough. Mrs Inky, noble squid that she is is not very well. This weekend was rough as I had to leave her to cope alone, . Also It is close to xmas, he most evil time of the year. Add into that the fact that my shoulders and ribs have spent more time Out of socket than in and it becomes shite. On toast.
BA have been normally helpful and I cannot really whinge but my GP. has been a complete git. He has chosen to change my meds without telling me so that l only found out at the pharmacy counter. the has cancelled the  painkillers I vse for breakthrough  pain. On Sunday these were the only things thatallowed me to care for Foal and Mrs Inky despite bad subluxes. Half an hour after screaming in painbeing helped into a cafe by a 9 year old I was able to function thanks to short acting tramadol. what I will do when it runs out I do notknow. I cannot cope on sustained release alone because he pain varies so much.
I suspect this is to do with tramadol being placed on the controlled drugs list but if so it Is another example of suffering being caused by puritan regulations with no basis in Science. Given my condition will never go away addiction is not a huge worry for me. Crippling pain Is.

Wednesday 3 December 2014

The Zebra in the Mead Hall

I suppose you could say I am lucky. I am generally at the light end of EDSery which gets called hypermobility syndrome.
Although i get a lot of pain a lot of the time my joints tend to sublux rather than dislocate and they relocate relatively easily.
This is a blessing believe me. Other nembers of my zebra whoop (or flange) get frank dislocations and regular ambulance rides to play tug of war in A and E. I just get invisible problems.
And I get days off.
Teusday was such a day. I could walk with no stick and my joints did what I asked. Colleagues said how much better I was getting. Tralala.
Then yesterday I woke up and my shoulders were not just normally ouchy they were both subluxed. So was my lumbar spine. And my ribs were extremely bad. With ribs I never really thought they had joints but it sure feels subluxy. So i could barely hold my stick, i couldnt lift my arms above nipple height, sitting was painful and i could only walk in the fixed stance normally used when you have shit yourself and wish to prevent trouserleg escape.
My physio was very short as I couldnt do much with no shoulders.
I should not complain. I got a day off.
But all it did was illustrate for me what my body should be capable of. Just when I get used to being limited, being a cripple, I get a reminder that I am supposed to be a fit man in my prime.
I think it is better not to know what the sun is than to have one day of warmth then go back to the dungeon.

Sunday 30 November 2014

Having your chicken and eating it.

I am aware that the last post was a bit gloomy and self centered.  So I am going to mix it up a bit now and do a recipe.  This one is dedicated to a certain devilish chicken of my acquaintance, a fair cook himself.
This is a way of making a chicken last for ages.  Or two meals at least.  Thing is the cost of running a house in the U.K. and another in Switzerland means I have to be a bit economic betimes.  This is a variant on Poule au Pot , a dish from the 17th century made famous by Henri IV of France.
First buy a chicken,  In the interest of ethics its best to find a living chicken who is able to state clearly that it wishes to be euthanised.  Sourcing depressed chickens can be tough but the ethical investment is worth it. Get your chicken to undress before it tops itself.
Once your chicken has offed itself, find a saucepan it fits in.  ideally you want one the chicken just fits in lengthwise, leaving room at the sides.  Said pan must have a tight fitting lid.
Check up the chicken for its innards.  If it has removed these for you thats ok but if possible leave the liver and neck in there.  Ram a large sprig of thyme, a large sprig of marjoram, a bunch of tarragon, some strips of lemon zest, 2 bay leaves and if possible a ham knuckle end up the chicken.  This is a good way of telling if it is really dead or just pretending.  Works on people too.
Heat a very small quantity of olive oil in the saucepan until v hot, then pop your chicken in face down to brown.  you can tell when its done because it begins to smell really chickeny.  Carefully fish it out then put it in tits upwards.  Give it the same amount of time on a hot flame, throw in a chopped leek, some chopped celeriac and chopped turnip down the sides of the chicken then pour in enough stock.
Enough is a tricky concept here.  basically too much is a problem.  Best way to judge it is via smut and innuendo.  When my wife is having a bath I like it when she is lying there relaxed with her breasts gently poking out of the surrounding steamy liquid.  The chicken should be the same.  Don't let its breasts get covered by liquid, it spoils the view.
Bring to the boil then turn down the heat to a simmer. Again make sure her tits are poking out of the water, not immersed.  Pop the lid on and simmer for 2 hrs. if it forns grotty froth skim it off
At the end of this time carefully remove the chicken from the pot and put on a draining plate.  Allow the liquid to settle and separate off the fat, retaining it ( the flavour is in the fat). Carefully remove the breasts ( which have been steamed) from your chicken and set aside- these are lovely cold with a simple salad.  This is meal number 1.
Pick the rest of the carcase over.  theres lots of good meat on thighs, drumsticks, back muscles,    all of it will pull off with your fingers.  either shred with fingers or chop, then pop back into the saucepan with the liquid.  Do the same for the ham knuckle if you had one- pick it clean.  Now throw the bones away.
Take the chicken fat and make a paste with it and some plain flour(this is a version of  beurre manie- used to thicken sauces).  bring the liquid to the boil, stir in a teaspoon of Dijon mustard, then stir in spoonfuls of the paste one at a time until the liquid is the desired thickness.  Season with salt and pepper. This glorious mess is halfway between a soup and a stew, and is the chickeniest soup evah.

So there you go  two meals one chicken.  It works best with a stringy old chicken.

for EPD.

Friday 28 November 2014

I'm your only friend; I'm not your only friend, but I'm a little glowing friend, but really I'm not actually your friend

There are a multitude of things wrong with me.
Well any poor soul who has read my rantings so far will have tumbled to that, but for once I am not going to lead off with my physical woes here.  I mean mentally.
I don't have an ongoing diagnosis other than occasional Major Depression for a simple reason:  several times I have been assessed by psychologists as part of induction to some treatment or other on the NHS (where if you want your ingrowing toenail removed they do a psych evaluation to make sure you won't miss it) and they tended to all come back with very similar tentative diagnoses. My doctor and I looked up the treatments available for them ( none) and decided that a label wasn't necessary or desirable.
But if you want a ballpark area then if you have schizoid personality disorder in mind then you probably aren't far away from the truth. I don't socialise.  I mean I really don't. The last social event I went to without being forced to by my wife or work was probably my wedding ten years ago.  And even then you could say there was a certain coercion involved.
People trigger a threat response in me.  I can't close my eyes with people around.  I don't like going to spaces where people are.  I prefer very formal, codified situations ( lectures for example are ok- its got rules).  Put me in a box with people and you have about 2 hrs before I will go nuts just to escape.
My first thought when entering a party is always the same ..."when can i leave?"
All of which would be fine if I was happy with this.  But I am not.  I'm fucking miserable.  And lonely.
Add all that to the EDS, a childhood of peer abuse and bullying and its a lovely mix.  One of the reasons i react so badly to the idea of there being a God is that I wouldn't want to see what I would do to the fucker if I met him.
Until recently I had a social outlet I could cope with.  It was an online forum which i joined almost by accident about 5 years ago and slowly came to spend a lot of time in.  The people there were not real people you see, they lived in the pixels of the PC screen. They were safe.
Over time, the board, which had been very confrontational in a right-on sixth form activist kind of way came to be a more caring place, with several threads devoted to caring for others and offering support.  As this coincided with my disabilities worsening you can imagine that this was very welcome.
The problem is it was not welcome to everyone.  A number of the sixth form activists really rather resented this.  Every time a fight erupted on the board they would suggest that getting rid of the support threads would be task 1 for a cleanup.  Their conception of the board was very different from mine or others.  I honestly could not tell you who was right.
Well you can probably see where this is going? One of the sixth formers and I got into a tussle.  He regarded himself as having a direct and forthright manner in debate.  I thought he was needlessly cruel, callous and obscene in his turn of phrase and quite vicious about it too.  I had said so many times in the past, gently at first.  Well recently there was a tussle, the normal suggestion was made and I objected to it.  This morphed rapidly into a situation where it felt like every time I posted on any thread the sixth former was there shouting abuse at me.
The discussion was long and tedious.  From my perspective he was unable to admit that he could possibly be wrong in any way.  His behaviour towards me I regard as simple bullying.  And I should Know.  It was the same attitude I got from my abusers.
After the first block of this I was crying and shaking in my office.  I had to lock the door so no-one could see me.  The moderators asked for a break for reflection.  He started again on another thread. I ended up self harming.  That night I overdosed on pills and alcohol.  I don't know if it was deliberate or not.  Could be either.
I went back to the board the next morning to find he had started up again.  And the people that I had cared about...well i m not sure what i wanted.  some kind of reaction.  But really, nothing happened.  Ripples in a pond. So i said goodbye.
The thing is that what i was saying goodbye to was people.  It turns out that people are never safe.  It was an illusion.  I suppose I should thank him for finally making me face the truth.  I may want to open up to people and interact with them, but it is a horrifically dangerous thing to do.  In truth it only leads to pain.
At least confiding in this blog is a mite safer.  I am the only person who ever reads it.

Thursday 6 November 2014

Physio

Physio is a fact of life for anyone with EDS. Or it should be .
Our joints are not the luxury models you stiffs have , we don't h - ave ligaments holding our Joints together, just muscles.
So physio may not be the gentle waving of legs you imagine. For me a full physio session, a thing I am supposed to do every day, would be the following...
20 minutes on a cross trainer to warm up
3x 10 sit-ups
3×10 leg raises
3X5 chin ups (assisted)
3x5 dips
3X 10 back extensions
3x8 bench press
3×8 inclined bench press
3x10 shoulder press
3X 10 front shoulder raises
3X 10 shrugs
3X10 shoulder flies
3X 10 Bicep curls
3X 10 leg press
3 X 10 Squats
3Xl0 ROWS

Thats every day. oh and th ere's some other ones l dont even have a name for
It takes about 2 hours.

Sounds healthy huh?
No doubt if l was on benefits I would be held up as a cheat. But it | dont do it I lose the ability to move,. And it is often very painful indeed. My shoulders sublux all the time and walking is awful. My hands hurt on the weights and my ribs pop out.

It is like being sentenced to hard labour wth no hope of a reprieve.

Mow mow mow your boat

The groves of academe can be pleasant. This morning l had to give an early lecture on entropy, which is always a fun subject. I mean what could be more fun than the end  of the universe?
But I started off with plugging my movember campaign . Its horrible to think that of all the handsome bright men in the lecture room roughly four will kill themselves . EDS is well known for being linked to depression . Constant pain, disability, poisoned genes etc. will do that to you.
Support groups help of course BUT ...
EDS mainly affects women. The support .groups can feel like hen parties. ..
Men are bad at sharing weakness at the best of times. But for many  showing weakness in front of a woman is impossible.
l am doing movember for the depressed suicidal zebra males out there. l am up to 8 suicide attempts sofar. l don't really want more. Movember is not Just about balls and prostrates it is also about Mental Health. So I am becoming a walrus for madness.
I have had a beard for 3 years. In that time I have lost 70 Kg So l look different. My neice says I look like House. My wife says I look like Dr. Who. l think I look old. Ho Hum.
In other news I have a cold and my Joints are on fire. Left hip is particularly bad as is right wrist. My shoulder dislocated whilst doing sit-ups in last nights physio. And it keeps snowing.

Tuesday 4 November 2014

Come fly with me...

Apologies for the long absence.  I have had speaking engagements, a concussion, 2 suicide attempts and an appraisal to deal with.  I shall try to betterise.

I am one of those people you stare it in airport queues in jealousy.  Nay not for my good looks or enormous genitals but because i have a silver frequent flier card which zooms me past queues.  I earned this by flying far too much between London and Zürich on BA.

I also, particularly these days, get zoomed because I am in a wheelchair much of the time.

Most airlines will offer wheelchair assistance of one kind or another.  In fact they buy it from the airports and the airports subcontract it from companies and the companies hire the staff.  Just the kind of arrangement that Mrs Thatcher put into the NHS and which turned our hospitals into the vibrant infective MRSA plague zones we know and love.  Because in this model no-one, and i mean no-one is responsible for anything.

The first point to ponder is this: airports are not big investors in wheelchair stocks.  The chairs are crap.  I have become something of a wheelchair fancier of late and i can say the best loaner wheelchairs I have found are the ones used by the Science Museum in London.  Seriously awesome things.  The worst ones are the rebadged shopping trolleys dredged out of a canal and operated in London City Airport.  Being wheeled around in those has caused me pain and injury before and generally now I will try to use my own chair when possible.

It is not just the injury risk.  lets say you turn up to an airport and ask for assistance from the check in on ( never do this).  It will take up to an hour to turn up.  They will then take you straight to the gate.  you will not get a chance to shop or do anything else because you are an unworthy cripple and should know your place.  Even should they turn up on time you will be in a transport chair not a self propelled chair so you cant move it anyway.  And often they will dump you then disappear off with the chair anyway.  I once spent 2 hrs marooned in a seat in the BA lounge in Tokyo Narita because this happened.  The service is overused and understaffed and customer wishes are way down the list.

London City Airport takes this a little further.  They have just revamped their terminal building.  For those who do not know it City is a small airport but very good for European flights.  It has a couple of shops and cafes and it has just upscaled the facilities with money from Bloomberg.  Bloomberg should be thoroughly ashamed of themselves for the result.  What they have done is ceate a facility that is impossible to access if you are chairbound.  It is one of the worst pieces of discriminatory developement I have ever seen and the company should be pilloried until they revise it.  Essentially you can access everything on legs but they have positioned chairs, tables etc so that wheelchairs are excluded from use of the restaurant, tables block access to the disabled loo, charging sockets have seats in front of them etc etc.  If one person had used it one time in a chair during design it would not have gone ahead,  but there you go.

City is not alone.  Heathrow Terminal 5 is a similar disgrace in places.  Ok the open thoroughfares are alright but the terminal staff selectively use disabled loos even when no queue is in the normal ones and get shirty when challenged.  The South lounge is full of nice comfy chairs etc but these are arranged in order to ensure cripples cant mix with real people.  Service counters have items arranged at the back out of reach.  The customer support staff talk down to you like nobodies business and have little grasp of reality.  One of them, sitting right next to a tannoy mike seriously wanted to indicate where I would be sitting for 5 hrs so she could see me.  The idea that I might want to roll around a bit and that she could use the Magic Talking Stick to find me was very alien.

But lets say that you make it to the gate on time...  What should happen is that you pre-board along with the other priority passengers.  This means they let you through early and then wheel you down.  You then take a seat on the empty plane.  Why do you go in first?  Well two reasons, firstly disabled people often have hand baggage that they really need mid flight such as meds, walking sticks, pillows etc.  If you get on with everyone else the stowage space gets full quickly.  If I cannot reach my walking stick mid flight I am a danger to myself and others and may very well piss in my seat, out of revenge if not need.  The other reason is about dignity.  would you like to hobble slowly down the aisle with 150 people you do not know all staring at you wondering why you are delaying them?

On Saturday that is exactly what the woman on duty at gate A22 terminal 5 on the 1305 to Zürich wanted me to do.  Simply because she could not be bothered to fill in a luggage form ( the lack of which was BA's fault incidentally) she wanted me to wait until after boarding and hobble onto a packed plane as a free freakshow for the masses.  I did manage to express my displeasure without actually telling her to get fucked but the get fucked was clearly implied.

Now pre-boarding is also offered to small children in pushchairs etc.  We all trundle down the ramp leaving our chariots at the bottom next to the plane door.  My chariot is known as Davros and I am considering fitting Boudicca style blades.  Now BA gives you an orange tag to attach to such things which tells the baggage pixies to return it to the plane door at your destination.  People on American Airlines would know this as Valet bag service.  My experience is that pushchairs automatically get this service.  But for wheelchairs you have to fight very very hard.  In Dallas Fort Worth on Friday last I had a flight which was delayed, then had its boarding moved up without announcement.  I got to the gate as preboarders were being lined up and asked the very artificial blonde lady for my wheelchair to return to the plane door.
She said "you mean the baggage carousel".
I said no, I meant the plane door.
"Its better if you reclaim it afterwards"
Better for who?  Give me the orange tags please
"these are for pushchairs"
No, they have a picture of both wheelchairs and pushchairs on.  furthermore it is BA policy that this is my right.  Also this flight will be very much more delayed because no-one is getting on till you comply with my reasonable request.
"I will have to ask my supervisor if we can do that"

Eventually she complied.  because she had to.  I was damned certain I would see her sacked if she didnt.  But this is how check-in staff bully you into things.  needless to say staff in Narita are worse- they attach the tag but then wrap the entire chair in bubble wrap, tie string around it and put it in the wrong hold so only the pilot can find it 1 hr after landing.

American airlines twice did an assistance fail this weekend.  At San Antonio the terminal is rather taller than an MD80.  So when the plane attaches itself the TerminalPenis has to slope downwards.  Now slopes are a nightmare in a chair.  My arms are pretty strong but fairly gentle inclines are tricky.  It took me 10 minutes to explain to the gatemonkey that although it was a ramp I needed someone to push me down or i was quite likely to splat at high speed into the side of the plane.

I may write up the whole journey in another post but before i go this time heres a final BA fail.  I have a medicalert tag, and I generally start a long haul flight by telling the service crew where it is and also asking them to wake me before bringing any trolleys through.  this is because if my muscles are relaxed a blow from a trolley can dislocate all my joints.  Fairly simple conversation, huh?  Here is my tag, Please wake me before trolleys.
When i said this to the lady on the 1745 Fort Worth to Heathrow i got in order "should you be sitting there?" ( yes i need to move around so an aisle is sadly necessary) "I dont see how we can help" and, my favourite "Well you shouldnt be flying then, are you sure you have medical clearance?".

Just one of those bigotted interactions that makes life so much better.

Saturday 19 July 2014

The naturalistic fallacy at work.

If you haven't come across the naturalistic fallacy before, it is the idea that anything natural is good. A moments thought will show that on that basis alone rattlesnakes must be awesome and should be cuddled. So off you go, tell me how that works out for you.
Today I have had two exampkes of the amount of phallus in that fallacy, from different directions.
Firstly as part of my normal life as an academic I am in South Kensington wanking for coins. Sorry mean lecturing. As many may have noticed it is hotter than a camels bum bag today, so hot that it has melted the few Sprungli truffles i was saving to revive myself.
However the torture pit in which i was teaching was air conditioned.
Trust me on that showing nature sucks.
I also had an interesting discussion with...well I was born in the 60s and grew up near Glastonbury. He wasnt a hippy but he was what people who don't know hippies think of when they say hippy.  Given that at coffee break i was in lotus trying to relax my back which is being a bastard today, and necking pills, the subject of my ailment came around.
Oh joy, he is a devotee of Bowen therapy, a mystic offshoot of chiropractic which combines nonsense with 70s gameshow hosts. Or something.
I was politely deflecting this when the old line about chemical analgesia being bad came up. What was interesting was that in his head analgesia = NSAID. Which sticks him in with a lot of GPs. So of course drugs rot your stomach etc.
I pointed out that opiates also exist, but the addiction limits use, rather stupidly imho.
He actually offered to source raw opium for me.
I have no need of this, as due to my gp being a rather cowed wreck of a man cowering under a desk I long ago opened the door to the land of poppy on the NHS. But it shows the level of idiocy we deal with. First drugs are bad mmmkay, lets rub your hand with my magic healing woo. But if that fails lets smoke smack! Its natchral!
I sometimes wonder if I am mad. But that would leave no word to describe the people i meet.

Monday 5 May 2014

Lovely refit...now do it again.

I use London City Airport a good deal. Its not the kind of airport you go to for the shopping, it has always been pretty functional but it works and it is efficient, so in my book it wins.

But there is nothing so good that a marketing twat cannot mess it up.

I have recently been spending more of my time in a wheelchair. It comes as a shock to people when i get out and walk around but actually mkst people in a wheelchair can probably walk a bit. With me my condition means i cant walk for long and standing still hurts like crazy. So i have given up on walking in airports. This weekend I am using city in a chair for the first time.

City has just had an internal refit sponsored by Bloomberg. There are lots of plug sockets, audio links, usb charger sockets etc. Of course there are none of those for people in wheelchairs but everyone knows cripples cant think or use computers so thats alright.

There are pleasant sitting areas, with low tables to gather round and chat. All of these are walled off with a string of bar tables and bar stools set just far enough apart to exclude a wheelchair.  So if you want to rest your drink ln something it has to be at head height.  But at least it stops the deformed wheely mutants from bothering the normal folk when they are trying to relax.

One of the really good things about city airports lounge was the view over the runway. You could sit and sip coffee and watch the planes. Now you have a massive wall of bloomberg info blocking the view from half of the room, and the other half is accessed by passageways so tight that you fear to go down them with a wheelchair because you will not be able to turn and come back, and if anyone has left a bag there you are stuffed.

City are trying to maximise the customer experience, and lets be clear there is nothing wrong with anything they have done in principle.  But it is very clear that the designer gave no thought at all to anyone with mobility problems. And in fact they are trying to make sure they do not clutter up the place by coming back.

It has to be said the security staff and check in folk were very well trained, professional and lovely.  But it comes to something when the highpoint of an airport trip is the body search.

I hope someone from city or bloomberg reads this. They need to.

Wednesday 9 April 2014

What have you got to be miserable about?

In some ways it is impossible to talk about an illness without indulging in what has been called, with some reason, disability top trumps.  How can one compare one disability with another after all?  Or one illness with another?  After all there was a huge fuss recently when, with the best intentions, a charity tried to compare one cancer to another.
To be honest its probably not worthwhile to even start.  After all what matters is that someone is in distress, not a sad, sick game of "Who's the gimpiest? ".  But we humans, or rather you humans and us horses, with our pack structures and our narrative imaginations seem, to need to rank everything.
On that basis my personal disability probably wouldn't make it into the top 100.  Don't get me wrong, i recently characterised it as:  (pardon the swears)

a pigfucking hyaenabitch arse elephant from hades with a cuntgiraffe chaser

but there are worse varieties even of Ehlers Danlos, and within my own variety I am one of the least afflicted. 
Why am i bothering about ranking systems?  Simply put, death.
I live in a country where euthanasia is technically legal.  But only in certain circumstances, the chief ones being that one has to have a terminal disease or a cancer, to qualify.  Now on one side I can see the point there, as probably those people are top of the list when it comes to suffering....or are they?  Seriously how does one gauge suffering?

I know that this is a touchy subject for many, and brings out a lot of make believe artists, but lets be clear here I am talking specifically about the right to die of people who can ask for it personally.  No coercion, no power of attorney.  I also emphatically do not want to promote the idea of topping oneself.  Its not a romantic statement.  It is a last resort.

But we live in a world where that last resort is effectively closed off to anyone who actually needs it.  I mean all due respect but if a cancer patient wants to kill themselves generally they should just substitute alternative medicine for the chemo and wait a year or two.  Some of us don't get off so lightly.

I do not understand, to be frank, why we do not allow anyone who asks for it a painless death.  Many people in chronic pain kill themselves, or try to.  Frankly they have a point.  Granted many suicides are irrational acts, carried out in the throes of great passion.  But some are rational choices.  Does anyone have the right to deny this exit?  My simple answer to that would be no.  Heck if I were in charge there would be combination drive-in suicide booths and pet food factories on industrial estates worldwide.

I may be a little liberal in my views there but it comes down to this for me...when life becomes an intolerable sentence do we really have the right to deny people parole?

Friday 21 March 2014

On Science and Salesmanship

Today I had to sit through three seminar talks given by candidates for a post at my institution.  The audience reaction is quite important to the hiring process here and so it is a duty not a pleasure, which is what seminars normally are for me.


The thing with seminars is that they have changed over time, and not in a good way.  Originally seminars were a discussion- the talk kicked off the questions and the questions kicked off the debate.  In some places this has degraded so that the only questions asked tend to be toadying ones, or occasionally, horror of horrors, there are no questions at all.  Frankly if I ever presented work where it roused no questions I would retire.  But luckily, where I work the spirit of the original seminar is alive and well.  There is often a debate.

I am well known for asking questions.  I once took my wife to a conference, partly to prove to her that it was indeed work not fun.  She was waiting outside a lecture hall with a friend of mine when a group of pale sweating students wandered past clearly shaken up.  when she asked what the matter was she was informed that they had had questions from me and needed to recover.  So today i was expected to ask questions.

I struggled.  It wasn't the 3 hrs pain racked sleep.  It wasn't that I didn't understand the subject.  It was simply that the only question I could think of was "What the hell was that crap?".  Because what I saw was bullshit layered thick and hard.

The problem is the insidious presence of advertising in science.  Of people selling themselves.  And not in an honest, up front prostitution type way.  Each talk started off with a gush about the areas of application.  Each one was about environmental/green/natural fallacy stuff.  And each gush was TOTALLY UNRELATED TO THE RESEARCH.  I mean for the love of god I bullshit for a living.  If you are going to sell me a line at least make it plausible.

In one of the films where he plays God George Burns has some advice for an evangelist, and I would like to paraphrase it for scientists.  If you want to sell something sell shoes.  Don't try to sell a line of bollocks in science.  It degrades the subject and it degrades you.

Sunday 16 March 2014

Pimping my other place

Just to let you know that the more sickness related and personal stuff will be being posted at my other blog.
Please visit and look around the site.  The guys at Chronically Skeptical need some traffic

Wednesday 5 March 2014

On pain, brains and drugs. And Vultures

Your standard GP struggles to treat pain.  I think it would be hard to find a GP who did not agree with that statement to some extent.  That's because pain isn't a thing.  It is lots of things.

For a start pain can be chronic or acute.  Or in some cases chronic acute.  The treatments for these are different, for complex reasons.

For another thing, pain is not what people think.  Or rather thinking plays a big part.  Because pain is not nociception.

Nociception is the nerve stimulus, the signal that tells the nervous system that Bad Thing Happen.  This is then processed into pain, which is the feeling.  Feeling is a good word for it because there is a strong emotional component there.  Now you may think that this is the same stuff, because the feeling arises from a signal.

Well no.  the same stimulus will give you different amounts of pain depending on mental state.  How you feel mentally affects how much pain you feel.  Bigtime.

Painkillers work in many different ways but they focus , for the most part, on the nociception end of pain.  Reducing the signal.  This is particularly true of the NSAIDS which don't do very much else.  It is also true of the opiates to a degree.  However some of the opiates have other effects which cross over into emotionsville, particularly Tramadol and Buprenorphine.  Tramadol has a lot of cross activity which makes it act very much like an SNRI antidepressant such as venlafaxine.  Buprenorphine plays with the kappa opioid receptor, which has effects on the emotional processing of pain.

Any drug based therapy for pain will have limitations because it is trying to fix a moving problem.  the same amount of stimulus feels different on different days, so the same amount of drug may not cope.  It may be fair to say that breakthrough pain is emotional in origin. So for long term use its best to have an emotional therapy as well as a pharmaceutical one. However despite limitations drug based therapies are probably the best we have, showing the strongest results.

Drugs do have limitations.  In the context here addiction is not one of them.  Dependence yes, addiction no.  Study after study has shown that when you are using the drugs for actual pain then addictive behaviour is unlikely.  Dependence and habituation are likely, and are difficulties with drug treatment.  Pain management programs can help a lot, but it depends who runs them and how they are run.  The intent should be to give the patient their life back by any means.  Anecdote alert but I have several friends whose experience of these programs is that all they are interested in is getting you off drugs.  never mind if you suffer, never mind if the result of this is that you have to spend all day every day thinking about your pain to manage it, drugs are bad mmkay.  This is what happens when ideology enters medicine.

A well run pain program should focus on reducing drugs where that can be doen without impacting quality of life.  Its main focus should be reduction of pain.

So we have an imperfect world, with no real answer to pain, just some strategies to make it a bit better.  Enter the vultures.

Its hard to talk about pain without someone bringing up some of the tired old bollocks beloved of the worried well.  You know, homeopathy, chiropractic, acupuncture, reiki, having your underpants chanted over, that sort of thing.  The people offering this are, in my honest opinion, either idiots or vultures.  Idiots in that in the face of all reliable evidence they believe this witchcraft works or vultures in that they know it doesn't but still prey on the desperate.  In the case of Ehlers Danlos even the support organisations have this stuff.  The HMSA in the UK has form here  where they say magnet plasters help some people.  Well yes, if your pain is being caused by iron filings, or by having geographically puzzled pigeons migrating into you.  But if its real this is just a distraction.  The Ehlers Danlos National Foundation in the US suggests in this tome that acupuncture or acupressure may help despite increasing evidence that its simply being in the room with someone who appears to care that reduces pain as acupuncture , sham acupuncture and placebo acupuncture ( synonyms) have the same effect.

Essentially selling hope to the hopeless makes you rich.  It also makes you pond slime.

Monday 3 March 2014

To start with I am rather new to this so the blogging thing may take a while to get going.  Possibly it will fizzle.  But unless you try you never know.

So I am going to imagine I have an audience out there.  Hello *waves*

Why am I blogging?  because I like ranting about things.  And other bloggers don't rant correctly.

So for my first rant...pain.

EDS comes with pain as a standard feature.  EDS-HT has more pain than other types, even though it is generally the least serious variety.  I spend my life in pain, sometimes severe, often just a background ache.  One of the better ways I have heard this described is think of the day you get flu.  You don't have the fever yet or the cough but your joints ache all over and you are so-darned-tired.

That's EDS-HT on a good day.

Now this rant is not a cry for sympathy.  I wouldn't know what to do with that if i got it and it certainly wouldn't change anything.  This rant is about attitudes to pain and pain medication.  There may be a supplemental rant about Pain Vultures.

If you mention to anyone that you are on pain medication the first thing you will be asked is when you are coming off it.  That's my experience anyway.  If you take pain medication in front of people they become uncomfortable.  I have had people change seats on flights to get away from me because I have used my in-flight coke to wash down some tramadol.  Pain medication is seen as a short term thing, and it is also seen as a vice.

When pain medication is mentioned in the media it is frequently in a context such as this call to tackle addiction or this warning about secret addiction in fact addiction is often the stand-out word.  After all who wants an addict as a husband, teacher, lawyer?  But what do we mean by addict?  Most people will develope a physical dependency on opiates and opioids through long term legitimate usage.  Are they addicts?  Well many people would say yes.

Pain medication is only fine if you are dying.  It is almost synonymous with palliative care.  If you are living it is something that should be short term, rationed and shunned.  But what does this mean for people living with chronic pain?  Generally a choice between being shunned and being in pain.

Drugs can change you, and change your behavior.  But nowhere near as much as constant pain does.  Chronic pain is undertreated, ignored and even seen as something that refines ones spirit.  Of course it makes you four times more likely to commit suicide, and that, mark you is amongst the ones who get specialised pain treatment at a dedicated clinic.  Pain clinics in the UK are not widely available, and often have pressures put on them by ideologues so that their goals are redefined toward reduction of drug use rather than control of symptoms.

Pain is something we treat poorly, understand poorly and tolerate poorly.  In this background the pain vultures thrive.  You know who i mean, the osteopaths, acupuncturists, Hopi ear candle merchants etc.  Offering hope to the hopeless.  There is a special circle of hell reserved for these people.

But that's another rant.