The road goes ever, ever on

Much has happened since I last filled in one of these.  And in fact my last post abut chutney should have given a clue about my emotional state. When I am upset I cook.
So I suppose I should fill in a bit more background not just dangle that in front of you.  But since we last spoke I have made not just the runner bean chutney

but also plum jam

greengage and cherry jam

and another chutney that we decided to call roger.  Roger is a red tomato and ginger chutney that is so popular it disappears almost instantly.  I may post the recipe for Roger at some point but as with all Inky cooking its a bit  chuck it in and see.

The holiday with Foal was a massive strain.  I hope she enjoyed it, but it really was tough to get through.  After I came back...well stress stress stress.

A lot of this is caused by my Apsergers tendencies.  I still haven't had a full diagnosis yet but the more I read about it and the more Aspies I talk to, the more it fits. So I am almost certainly on the spectrum somewhere , though it may be PDD NOS.  Which means Murmur was right.  Murmur is a sometime commenter on here who comes from another e-place.  I always think of him as a badger in an old fashioned nurses uniform.  For some reason this upsets him.

Mrsinky and I had argued before I went because I chose the wrong time to have a conversation.  To my Aspie brain it went: this is a conversation we must have, this is the last time we can have it before holidays so we should have it.

The fact it was her first day in a new job, she had toothache and whiplash and a bunch of other stuff going on didn't enter my brain as relevant because that was just emotional stuff. This blog post says quite well how my brain works.  I automatically suppress emotions, and regard any emotional decision as suspect if not de facto wrong.  I respond to people in distress by trying to help them rather than comfort them. See here for why.  This isn't a choice, I genuinely do not know what people want if not help.

It is worse than that of course.  I find expressions of emotions in other people at best troubling.  I literally do not speak that language.  So when  friend tells me that they love me (platonic) I have no idea what to do.  I have the same problem with my parents and siblings.  Their expressions of affection have puzzled and bothered me for a long time.  I have just about worked out what to do when being hugged ( I have a strong dislike of invasions of personal space of any kind, and hate anyone touching me unless we are shagging.  I am hypersensitive to some touches and textures.  Get me to furnish a house and it would be chrome, marble, gloss paint and glass) but find the myriad verbal expressions of emotion...well what are you supposed to say?  How are you supposed to act?  You end up running down a horrible decision tree of responses trying to work out which one will not hurt their feelings or sound weird or whatever.  And that is positive emotion.

Negative emotion is worse.  I had a primary school headmaster whose facial expression, to me, looked like a smile when he was angry.  This led to me being slippered at least once because I misread it.  When someone shouts at me I sit there and take it silently, unless I really need to defend a position.  I respond that way to challenge. I do not enter into competition...in planning meetings or research I give my opinion.  If someone disagrees with it I leave it up to them.  When they find out they are wrong they will be back.  But I won't fight for it.  It is there, take it or leave it.

On the whole I dislike many TV dramas etc. because they insist on focussing on peoples relationships and feelings rather than the plot.  Once you fast forward past these the program becomes quite short.  It is easier if it is well written or funny, so I could watch Buffy in full, as the writing was good.  Except for the bits where she was moping or Angel was brooding, because who cares.  Similarly I think Lois and Clark ruined superman because it became about them having a relationship rather than anything interesting.  But brooding drama...it has to be really really good before I can stand it.

Musicals used to frighten me as a child.  You would have people talking and acting normal then all of a sudden they would start singing and dancing.  It was like they had caught a disease or something.

I could never watch Eastender's or many other soaps.  To me they are all about shouting and anger, and they make me uncomfortable and anxious.  Anger and sadness in others is the worst.  this actually hurts.  It is a mental pain that will not stop until the source of distress is dealt with.  And it is not just one hammer blow it is a constant mounting pain.  The longer I spend with someone showing negative emotion without being able to help them, the more it hurts.  This is why my response to a crying MrsInky is always an offer to help sort out the problem.  What she actually wants tends to be sympathy, but as in the link above I don't know how to do that.  She finds me trying to sort out the problem irritating.  But the thing then is that I have a person in front of me who seems to want to torture me.  They are causing me real distress by radiating negative emotion, and refusing to let me help it stop, which is the only relief from pain I can get.  To my brain telling someone abut a problem without letting them help is cruel.  You are making them miserable as well.

Aspies are known for meltdowns, and yes I show this too.  Negative emotional stimuli like the above are cumulative.  So stress builds.  You can relieve it by doing something, work or a workout or whatever.  But it builds up.  If you then go into an argument or an emotional situation this can overspill.  You meltdown.  This can take many forms.  With me the first thing is a desire to run.  I have to get out of the situation, away from the stimulus.  I go into a room and shut the door away from whoever it is I am talking to,  Of course this sometimes makes them want to follow you to continue the conversation/argument/interaction.  I have been known to end up sitting in a room with my back against the door with other people shouting through it. Sometimes all they are trying to do s see if I am OK but my brain cannot process this and just needs them to stop emoting at me.

Seriously people your emotions are deafening.  Please turn down the volume.

If the stimulus keeps up I will end up self harming in a non premeditated way.  This might be trying to break my hand bones by punching a wall, hitting myself on the head with a rock, trying to stab myself.  Whatever. It is always, always directed inwards at me.  I want the pain, or indeed death to make the emotions stop.

If you know an aspie of course you may want to help them in a meltdown, but seriously what they almost certainly need is an absence of human stimulus.  person dependent, of course.  Ask them.  But I am betting that's what they need.

Now at the moment I have got so much stress on my plate that a meltdown is always about a minute away.  And because I am depressed that takes a different form, like hysterical weeping or suicidal ideation so loud I have to turn  up the ipod to max to drown it out.  The only thing that helps is getting Spock to find something to do.  Do jobs.  Focus focus focus.  Repress.  That is fine until someone asks me how I am, for example.  Or there is a trigger like the final scene in When Harry Met Sally (one of my favourite films.  I think I can never watch it again).  

Anyhoo, am still taking Bupropion.  Annoying Psych doubled the dose because no effect.  I am not sure now what it is doing.  the dose is split morning and evening and frankly I think it is stopping me from sleeping.  I certainly need chemical assistance to do so.  As for effect I am having crisis after crisis.  I am arranging jobs.

On Tuesday I attempt my CBT for motorbike which I am hoping I will pass.  Brrrm.

I am also planning an attempt on the Cape Wrath Trail.  I decided on this pretty recently, and I have therefore imposed on MrsInky by leaving the childcare etc. to her for 3 weeks.  I feel bad about this.

I do not know if I will be able to do it all.  I am in remission at the moment but my joints are susceptible to damage.  And I am wrong in the head.  And that trail is ROUGH.

But it has things I need.  A challenge to make me feel like a man (horse) again.  I have had all the trappings of manhood stripped from me.  It has space and mountains, which I miss very much.  It has a lack of people, which I feel I need right now.  And it has mortification of the flesh, which might sort out my head.  And given the vagaries of my EDS carpe diem, it may be my last shot.

As I say I may drop out early.  I know many people do and there is no shame.  But lets see.

Time keeps moving on, friends they turn away

Its been a while and there is a reason.  I am functioning in a barely functioning way at the moment.
You may remember I talked about a split in my brain, where Spock is the unemotional problem solver and Emo does the emotional responses.
This developed way before I was officially a scientist but it certainly helps.  Working in science the temptation to run off with the first positive data going yippeee I've found Inky's law is very strong, and very human.  In fact in my field (Microfluidics) a very large number of papers consist of this behaviour which is why I get a bad rep at conference for pointing this out.  Stepping back, turning off the joy and going yebbut do this yebbut do that is  vital for real  science.
Spock has been far more in charge than normal.  I have been getting up, dropping Foal off, going to sofa, carefully doing nothing, then getting foal and doing bedtime stuff.  Nothing else.  Ive had the odd evening out at the cinema or playing backgammon but....hard to explain.  Cinema i do it, but I am alone and when the movie ends I drop like a stone.  start crying and cant stop.  All the films have family as a core and I have lost mine.  Even horror films the dad saves the little girl.  It is almost unbearable.
With backgammon, or grindr dates, or whatever while i am there i am sociable (as much as i can fake it) and turned on but when I leave I turn off.  Spock again.  things to do.
I cannot motivate myself to work, or write, or do models or anything much.  I have no spare motivation.  All I can see in the future is black.
The shrink battle is better.  Remember the practice manager over 4 weeks was saying that Dr Snidearse could not be excluded from my case because admin.  I got in touch with PALS, and the formal complaints people and they both got the IDT to admit this was bollocks so now have assurance that this will happen.  But lets look at the timeline:
Complaint (9th june) despite complaints procedure demand written complaint (18th june)
Date on complaints committee document as start of complaint 2nd July.
I rang the complaints staff and said why does it take nearly a month for a complaint to reach you?  they said dunno.  they agreed with me that there was no barrier to Snidearsectomy.  Have added addendum to complaint saying why not process verbal complaint and why does it take you a month?
Another thing is the physio.  Am in a shoulder class which started yesterday.  Walk in and its warmup time.  they just have exercise bikes.  I cannot use these because the weight of my legs tend to dislocate my hips.  must remember to try and deal with that. The woman checking people in was a total cow.  when I said can I have an alternated warmup she said "if you are too ill to get on a bie you shouldd not be here".  Would not listen to me that alternate equipment would work.  In the end i got a treadmill (something else i cant use because it wears my hips out) and put it up to full incline to mimic a x trainer.  and got shouted at for difficulty.  No, luv, if its flat I cannot do it.
Several exercises were dangerous for me.  One involved step up, raise arm, step back.  Now stepping back is dangerous because i have bad proprioception.  I have to look.  As I was explaining this during demo i raise my arms and my two lowest ribs sublux outwards, hitting the physio in the wrist.
Now this physio has heard of eds, but he (this isn't warmup bitch) really wasnt the best communicator.  Mind you with his looks he doesn't have to be. He did adapt some exercises.  He had to.  another one involved balancing on a wobble board and throwing a ball.  Told him flat out that would put me in a and e.  He did adapt it.
But his smug assurance that he knew about eds....I doubt it.  Really I do.
AAnyhoo, on and on.

So many dead ends, I’m at the edge of the lake Sometimes I wonder what it’s gonna take

Not all at Inky Towers continues well.
This is, of course, an understatement.  Mrsinky is hella stressed at work and has an injury to boot which is leaving her...well shall we say short tempered.   This has made living with her more than ususally hurtful and stressful.
Foal is picking up on this and reacting by being extra awful.  She really was unbelievable this morning.
Im stuck in the middle.  last night i was sat there trying desperately to hang on.  wanted to go out but had nowhere to go.  wanted to get blind drunk just to make it stop.  In the end went to bed, zopiclone plus triple vodka tonic made the world go away.
but this is total shit.

Oh Fog Me

There is a common term in the Sickosphere at the moment which really irritates me.  Brain Fog.
"Why does it irritate you, oh noble Senator?" I hear my one timid reader asking...
Well because of a number of things.  For a start it is twee, and i really do not do twee.  I would go through Brigadoon with a machete and flame thrower.  But worse from my point of view is that it is totally non specific, referring to a wide range of symptoms.  One persons Brain Fog is not like another.  OK whichever idiot twat first coined the phrase may have thought they were being specific but the problem of false friendship is always there.  If you have a phrase that sounds like something accessible people get it wrong.
In science we get this when the jargon we use is too easy.  Look at the spin on subatomic particles, which isn't spin at all.  Or indeed the relaxation time inherent in many non-dimensionalisations which isn't either a time or anything to do with relaxation.
If you look up many of the chronic incurable illnesses (remorseless fecking arse plagues (RFAPs) as I like to call them) online you will see Brain Fog increasingly listed as a symptom.  Even for the imaginary ones like Adrenal Fatigue or Self Diagnosed Gluten Intolerance (which used to be known as attention seeking in the old days).  It is meaningless twaddle.
So how do we cope with this handwavy bollocks?  I mean even for psychologists this is a tad vague and general.  For myself I tend to break it down into a number of headings and then try to use them.  I also, and I cannot encourage this too firmly, advocate tapping your Dr lightly on the forehead with a plastic spoon every time he or she uses a phrase like this.  Either that or start using phrases like "magic wagon without horses"for car or "pockety bum cover" for trousers until they stop it too.

Brain Fog 1)

Fatigue

You know, being knackered, but knackered in the head.  Mental fatigue is a common consequence of chronic pain or illness

Brain Fog 2)

Cognitive Impairment

Many of the drugs we take, such as opiates, pregabalin, gabapentin, hypnotics etc. etc. affect how we think.  How fast, with how much memory,

Brain Fog 3)

Autonomic problems

I have mentioned my dysautonomia before.  It is one of the key challenges to me getting up in the mornings.  My heart beats at 30 bpm when I am asleep which is not really enough to let my brain get fully going.  Consequently my head has a longer bootup sequence than a 286 running Windows 3.2.

Brain Fog 4)

Dysthymia

I think this is an important one.  I find, at the moment, it very hard to sit and concentrate on anything.  Hard to make it matter enough to focus.  I used to be able to sit down and just do one thing for 8 hrs at a time, no breaks.  Given my ASD-type leanings this is pretty typical.  But now I cant make myslf care enough.  I think this is basically a symptom of the low level depression known as dysthymia.

Brain Fog 4)

Depression

Those who think depression is being sad may not realise inabiit to do or care, everything being behind a wall of grey is classic depression

Brain Fog 5)

Substance Abuse

Well many of us are junkies.

No doubt, gentle reader, you will be able to think of more.  But I ask you is lumping them all together helpful in any way?  Particularly as it is under a baby talk label which makes us sound like we have a reading age of 2.

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.

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?