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.

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 .

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.

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.

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.

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.

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.