a pocketful of mumbles, such are promises

So as is increasingly the case I am in Costa. Again with the cafe hotties though one is the manager so I cannot easily add a snap.  However enough to look at.
Yesterday my mood was not good.  I had significant small muscle tremor by 5pm, which may have been somatic or not ( I am increasingly worried by neurological symptoms but know that depression can give them too) and was weeping in a chair for a couple of hours.  In the end i went out on a chocolate buying run just to have thingtodo, bought some gin and downed 1/3 bottle with a garnish of bitter lemon and a zopiclone.  So adieu consciousness.
Today I am not hung over as such though lots of things are taking longer than they should and i feel neurologically dodgy...but then this is less worrying than yesterday as I have a proximal cause.
I am very keen on trying to sort out at least one paper and the rest of the trashy novel I have been inflicting on perce every so often.  Or at least I am keen upp till the point of doing something about it then I fail.
Yesterday I had made up my mind to dump Date. Simply to minimise the damage I did to him.  i cannot form a mental picture that involves me being alive in a years time and he deserves more than that.
I went into town to pick up new contacts.  glasses drive me insane but lenses do too.  the free trial of 5 pairs is not enough for me to try and get used to the horrific feeling of eyefulness from the lenses so have orderd 30 pairs to give it a fair go.  If this fails will try to have eyes lasered.  Problem is the acuity I am used to is very very high.  so I am asking them to give me back above normal vision.  true to my neurology my brain cannot process multifocals, or glasses or any other vision trick as anything other than a nausea inducing obstacle to sight.  as we speak I am trying to look round the edges of the obstacle in front of my eyes (glasses) as my brain is telling me over and over it is in the way.  Maddening.
yesterdays physio, who told me that training me was like training a stroke victim because of proprioceptive lack, has kinda stuck in my head.  there is an asimov story where a kid with CP is hooked up to a virtual link to a rover on mars and can suddenly run and play because he is on the right planet at last.  I am waiting to find out what fucking planet I was supposed to be on.  I suspect it was that one from Stargate SG-1 which was falling into a black hole.
Zoodlewurdle.
Tonight foal and I will be doing experimental pasties.  but to go with it Inkys Patented really easy leek and potato soup, which I think I have posted before... but here goes.
You need:
Leeks,
Potato
ready meal mash
stock
butter or oil.

remove green tops from leeks.  make up the stock hot and allow leek tops to add their distinctiveness to it.  Cut the leekwhites into rings, sweat on VERY low heat in the butter until soft but NOT BROWN, OH GOD HELP YOU IF THE LEEKS BROWN.
cube the potatos about 1cm on a side, add to the pan and toss in the fat.  grind in black pepper.  also season with herbs of choice.  dill is excellent here, as, oddly is lavender.  lovage too.  or sage.  i shall be saging it.
as soon as the flavour of the herbs have infused out ( you will smell it) add the stock to take the level up...i suggest normally about2-3 times the volume of solids.  heat it up.
simmer for 10 mins till the cubes are soft, then thicken by stirring in the ready meal mash.
a pot of sour cream is a nice finish but you do not have to.
garnishes such as thin sliced kabanos, bacon cubes, chives, dill, small trained swimming sheep, bread dumplings, etc are optional.
eat with a spoon and a slurp.

Think I know how a coyote feels When he's howling just to Ease the pain,

In a way I have always been two people. I think it is a science thing.  Let us call them Spock and Emo.
Spock runs my life.  He does not do emotions.  you give him a problem he looks up the most rational solution then serves it up with no value judgements and no pack drill.  problem--> solution.
Emo is normally pushed into a corner.  His responses are emotional and therefore unhelpful.  In any interaction Spock gets first dibs and Emo is only allowed out if time allows.  which it rarely does.
So in a crisis I am quite frequently saying to people "drop the emotion we don't have time for that" and then getting on with it while others are flapping around blaming and crying and stuff.

Even now this is the case.  I keep saying that filling in my diary keeps me alive.  This is because Spock runs the diary.  While he is in charge there aren't any emotions so it is great.  I wish he could run it all the time.  So I need a job, Spock is applying for jobs.  I need some comfort, Spock is browsing dating websites.  I need help with mental health, Spock takes me to the psychiatrist.

The psychiatrist sees this as signs of wanting to move on, signs of belief.

This isn't right.  Spock doesn't believe in anything, he selects the best match from available options. In fact if Spock did believe in anything he would be a total hindrance as a scientist.  I think this mindset is difficult for outsiders to assess.

Emo does not believe that help is there.  He is beyond despair into destructive behaviours.  Accessing Emo results in tears and helplessness and lashing out at walls etc in a pit of pure animal hurt.  Emo is currently like a slug in a box of salt, squirming and dissolving in a world of pain.

Spock is getting desperate.  the problems he is being given are basically "how do i kill myself painlessly" and " how can I get myself locked away" which even Spock can recognise as unhelpful.

So with the psych, like today, when they ask how I am emo comes up and I start crying.  then when they ask what I want from them Spock pops out and answers rationally and in a controlled way.  So I appear to be coping.  Not typicallly depressed.

Actually my trajectory...It is like a chess player trying to play for a stalemate when someone keeps removing his pieces from the board, limiting his options into smaller and smaller pieces of the playing area.

I am currently down to a pawn and a broken horsey.

All I can think about is death.  Emo wants it and its about the only move Spock has left.  This may be adjustment disorder or whatever.  I do not think I can survive it.  The psych keeps talking about accessing the emotional side.  this is the opposite of what I want.  If I could arrange never to access that madness again I would be so much better off.

Drugs are bad, mmmkay?

Oh i know, you have heard me talking about drugs a good deal.
They form a major part of my life, and the lives of  most zebras.  And there are some experiences we all have in common, I think.

We have tried to soldier on without them, putting ourselves through pain and damage.

The expert medical advice is to medicate at the first hint of pain, to avoid damage and kinesiophobia.

We have had a loved one tell us the drugs change us and they hate it.

As a very wise woman put it, would you rather me be 90% me, 10% drugs or 10% me 90% pain?

We have had doctors, often locums, refuse to renew our prescriptions, sentencing us to agony.

Show me a chronic pain patient and I will show you someone who stockpiles drugs.  If your life depended on something, would you secure your supply?

We have had "alternative" pain relief pushed at us by relatives and medics.

See below, but basically it doesn't fucking work.

We have been told that taking opiates will give us hyperalgesia and lead to even more pain.

See below, this is , well what is a polite word for bollocks?

We have been told that the drugs are addictive, and this is awful.



So OK how do we deal with this and come to a sensible idea of how to live.
First of all amongst the few experts in EDS-HT out there there is no argument that pain must be controlled and controlled early.  NSAIDS are recommended as are the lesser opiates such as codeine and tramadol.  The advice is plain, at the first hint of pain take the pill.  Put simply the pain causes movement alteration which sets off other joints etc.  Also the pain is NOT going to go anywhere.  So take the damned pill.
Oddly most zebras are resistant to this.  Many of us try for years to not take pills, to struggle on.  And we make ourselves worse doing it.  Partly this is because of the massive peer pressure against any kind of drug use.  Partly it is the side effects, and here is where doctors should have a pineapple shoved up their recta (what is the plural of rectums?) because a bit of counselling and co-medication could eliminate these.  With NSAIDs for example there is no excuse for not co-prescribing omeprazole to stop the really horrible stomach symptoms.  No-one enjoys vomiting blood.  It is not a rare event, it is rare to have no gastric sequelae from NSAIDs. So why is the co-prescription not automatic?  Similarly with opiates.  I have had a few opiates over the years.  Currently on tramadol but Codeine and buprenorphine also.  All of them constipate you.  I currently shit once every 3 days, a turd of such size that it blocks the toilet.  When you flush the water builds up behind it until it fires it through the pipes like a torpedo.  Sometimes if i am dehydrated, or have been inactive, its a hard one.
Tell me gentle reader, have you ever done a shit so large the pain of passing it has made you faint, so you wake up head down, arse up half on the toilet with a giant poo-pole hanging out of your arse?  No?
It is an experience.  And thats a good one.  I have had poos that just wouldnt come out.  Being hypermobile means that you can reach 6 inches up your own arse, which comes in handy on those occasions.
What many people do not realise is that those experiences, which all opiate users will recognise, are TOTALLY UNNECESSARY.  Study after study has shown that combining an oral opiate with naloxone gives full opiate activity and no constipation at all.  I have one painkiller for long flights that is called targin, combines long acting oxycodone with naloxone.  Not only does it not cause constipation, it unleashes the pent up tramadol poo-hordes.  I have to take it for a day pre flight to shit it all out.  So why do opiates not automatically get prescribed with naloxone?
Other side effects only go away with time.  The wooziness, cognitive difficulties, sleepines etc. tend to fade after a few weeks.  But there is no doubt that this manifests as the kind of behavioural changes our loved ones dislike.  But then our loved ones need to feel our pain, really its not an option to hurt like that all the time.

So what about the alternatives to drugs, I hear you say?

Well oddly most of us have come across these already.  Nociception, the actual nerve stimulus, is not the same as perceived pain.  So if you distract yourself, keep busy, keep moving, it gets less hurty.  this is how all those mindfulness courses etc. work and it does work.  I took up origami as a distractor and to keep my hands moving ( being still hurts.  I know this is a bracket but take a while to think about that- the act of resting hurts.  That says it all about EDS for me) and it helps a bit.  The other thing is not to allow too much space in your consciousness for pain.  Do you remember "A Nightmare on Elm Street" where by turning your back on Mr Krueger you robbed him of power?  Well if you think of pain as a message, and a fact, but nothing to worry about then it gets less.  If pain itself upsets and panics you then it will get worse.  And that, children, is how CBT for pain works.
So two woo-ey methods with some point.  now on to the dubious bit.  Accupuncture.
Why it is that people who care for me want some escapee from a Jackie Chan movie to ram unsterilised needles into my taint I have no idea, but this is the number one suggestion.  And it doesnt work.  Or rather it is a placebo. Pretending to do it works just as well as doing it.  Placebos are unethical, end of.
Now what about the opiates?
Well we know they are addictive.  But we also know that if you take them for pain, not pleasure, they are much less so.  We also know that using addiction as a term for dependence is unethical and just stupid. This paywalled study gives good data to suggest that fewer than 10% of chronic pain patients go on to become addicted in any reasonable definition and this number drops if you discount needing to take the drug to stop the pain as a condition.  In fact chronic pain patients are considerably less likely to be drug addicts than doctors.
Hyperalgesia is another one.  Most doctors will peddle this.  This is the idea that drug dependent people, habitual opiate users, will become hypersensitive to pain.  There is evidence too.  Sort of.
You see when you induce pain for studies you cant just kick people in the nuts.  you need science pain.  So they use Cold Pressure.  And using Cold Pressure you see hyperalgesia in all opiate users.  the pain gets worse the more they take.
Unfortunately this only applies to Cold Pressure pain, which is totally unnatural to anyone except penguins.  Electrically induced pain does not show hyperalgesia, nor does heat.  Or being kicked in the nuts,  So this bears limited relationship to actual pain , except for some headaches.  So as a reason to withhold treatment it isnt.

Fuck it, its time to go to the gym.  But you get the gist- lots of poor information, lots of pressure.  I cant get no satisfaction etc.

By the way i can give a couple of tips.  Endorphins.  Once i start at the gym i get pain relief, which lasts at least 30 mins afterwards.
Similarly when enjoying the carnal delights of Mrsinky I am pain free, and will remain so for about an hour after finishing.  Perhaps not practical for pain at work, but it definitely helps me sleep.

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.