Anyway, I can't believe you want to turn the page.

This is the first section of my holiday journal from the recent, slightly abortive, trek.  Whenever I go walking I keep a diary.  Here I am trying to match it up with the pictures.
13/09/15
Ipswich-Fort William

I always find it tricky packing.  I have a tendency to overpack.  I also had very little time without people present.  I cannot concentrate on anything is someone talks to me and that was all MrsInky and Foal wanted to do.  So the planning I needed to put into it was not there.
I used the guidelines in the Cicerone guide to pack equipment.  Tent, sleeping bag, self inflating mat, clothes, waterproofs, gaiters, gloves, bothy shoes, stove, mug, cutlery, multitool, emergency kit, first aid kit, poo trowel, head torch.  All with as many dry sacks as I could find.
Of course I also had to pack food.  I had a mix of dry ingredients, peperami, spices etc.  Also several of the Mountain House dehydrated meals.  The problem is that on this trail you have to carry food because there is not much en route.  4 days at any 1 time.
My rucksack, though large, had to have lots strapped on the outside.  It is very very heavy.  I know this is a mistake but can do nothing at this stage.
I have a small bottle of whiskey along, and this journal and my kindle and origami paper.  Thats my entertainment.
I got a taxi at 13.30 with a rather strange driver.  He was a Kurdish immigrant who used to ive in the mountains.  he was a concert pianist, violinist and violator (or whatever a viola player is called).  Very friendly guy.
I caught the 14.47 down and then round the tube to Euston.  This meant a long wait for the sleeper but I would rather be early than late.  And anyway I can be alone and peaceful there.  Of course Euston had decided to close its internal  eateries so I was sitting outside and frankly the air temperature was not warm.
I am trying to master an origami unicorn but it is very very hard.  I am smoking too much e-cig.  This is mainly stress related.  I am very very very stressed out.
I ate a chilli in Ed's American Diner which was pretty reasonable.
I boarded the sleeper about 19.30, to find my bunkmate, Pete, already in.  I only just got my rucksack in the space, then went down to the cafe.  I had forgotten how small the standard bunks are.
Down at the cafe Pete and his friend Meg were sat down and i joined them as it was the only free seat.  I didnt need more food but had a Bowmore which was rather nice.  We chatted, and then by chance Meg's bunk mate failed to turn up so Pete was moved into her cab, leaving me alone in the space.  While they were arranging this I rang Foal at 9pm to say good luck- she was off on adventure camp the next week, with rucksack etc.
We talked a while in the cafe and I showed them a few origami standards, then I went to bed.
I am very conflicted about MrsInky.  She cried when we said goodbye and said how much she would miss me.  But if that is the case why is she leaving?  At times people drive me insane. Why not just say what you mean?
The motion of the sleeper is not wonderful for my joints, so my sleep is rather disturbed.

I'm a boy, I'm a boy but my Ma won't admit it

Male zebras are relatively rare.

Well the condition seems to affect more women than men.  Certainly the chatrooms and support organisations are pretty much sausage free zones.  You do find some online though.
And that is good because male zebras do get some problems unique to the type.
This post is going to involve a variety of EDS symptoms/things some of which are male specific and others of which are a bit more general.
First I can start with something that seems to be true on informal data gathering and may be one of the few bonus cards you get with this disease.
Male zebras are hung.
They tend to be growers not showers but the elastic nature of the tissue means that we are essentially blessed with an extra, retractable, leg.  No I am not posting pictures.  Look me up on Grindr.
So far so good.
Now you knew there was a downside, yes?
A few weeks ago I developed ...well cracks on my cock.  Specifically on the foreskin. Very painful on peeing and retracting.  And no no pictures of that either.  These cracks would scar, but the scar would make it difficult to retract, and then it would split and...just ouch.
Being a responsible chap I went to my GP.  He has an absolute horror of anything in my pants.  Seriously the guy diagnosed me with sclerosed external haemorrhoids on the basis of my description of what I could feel.  So he said Clap Clinic.  I was going anyway, as responsible adults sshould every so often.  They did various embarrassing tests then got a doc to stare at it for a while.  He said he didn't think it was herpes but gave me a course of acyclovir anyway while the tests went off.
Anyway acyclovir comes and goes, it gets no better.  Tests come back all clear.
So I was chatting to a male zebra online and the subject of sore cocks came up and he said yes, very common, it is due to skin fragility and having a big dick. Steroid cream for the scarring, he said.  So I procured some Canesten HC (which is a weak steroid as well as an antifungal), smeared it on, and within 2 days all was normal in cocksville
Now I am not recommending self diagnosis here but on investigation this is common for male zebras.  But it is word of mouth.  I have done a LOT of pubmed searches around this disease, and have excellent journal access.  Not a...ahem...sausage.
So the reason for sticking this here is to spread the word that male zebras have enormous but fragile cocks.

Now this gentle reader is cigarette paper scarring.  I had 2 small spots on my leg and this scar tissue developed where they were.  This is another well documented zebra skin thing.  Pretty isn't it?  No?

Now you know I went hiking recently?  I looked after my feet, did everything you are meant to do, wore good, well broke in boots, proper socks, everything.

Below is the state of my feet.  I am certainly going to lose 2 toenails and the skin on the rest is looking dodgy.  This goes a little beyond the normal hiking foot damage.

Basically at the moment my skin is falling apart.  Oh what fun

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.

I win the gene pool lottery

So today I was tweeting with Carl Zimmer about imagination.  This brought up something of a shock for me.  You know when people talk about picturing things in their heads?  The minds eye?
Turns out they actually see the pictures.
I had assumed all my life that this was a metaphor.  I have never been able to conjure images in my head.  I have an excellent relational memory but not a visual one.  If i need to picture something I draw it.  I am famous for my whiteboard use.
Seems this is a condition known as aphantasia.  And it is relatively uncommon.  estimated as 2%.

So OK lets review the Inky lottery.  The following are estimates of the occurence frequencies of what I have.  the Ehlers Danlos one is actually a high estimate.  many references state it as 5 to 10 times less common.
Aphantasia ~2%
Ehlers Danlos 0.1%
Aspergers 0.29%

now I am not captain probability but i think to get the likelihood of having all those, assuming they are independent, you multiply them.  That means a probability of 1 in 17 000 000 000 or so.

Winning Lotto is around 1000 times more likely at 1 in 14 000 000

the odds of being killed by a meteorite strike is 1 in 700 000
given there are around 6 000 000 000 people on the planet and at least one of them has had sex with Joanna Lumley I was more likely to get me some Purdey than all of this shit.

this is seriously looking like a personal grudge not random chance.

every now and then i get a little bit lonely

soooo...

Date has been very elusive.  He is self employed and client dependent so I can understand that to an extent but it seems he is never available at evenings and weekends.  So I suspect I am not the only one.  Well shucks we never had that conversation so I cannot really complain.  So in the meantime I have been trolling Grindr and...well mixed results.
of course there is the normal bombardment of people who want to shag me because of oliver but to be honest i suspect most of them are hucksters. I make it plain its coffee first.  I have hadd 2 meetups.  One with a really charming guy who has similar minority bingo scores to me. (In his case, CP, Aspergers, gay).  To be honest meeting another high functioning aspie (becoming more convinced that diagnosis is correct) was refreshing as much in common.  really nice chat.  But I think he is interested only in chat.  may well ddo that again if only for company.
Last night, unexpectedly was at loose end so took a gamble on one of the randoms...seems lovely guy.  He is on his uppers and i went round with DVDs to just spend an evening of takeaway and chat.  or so i thought.
except of course he is in the closet, isnt he.  andd his lodger unexpectedly needed to come home.  so i was out the door wasnt I.
Shame as i then had an evening of crappy films on sky and pizza.  with sheldon, who is charming but not my species.
He was very apologetic and having been so far in the closet myself for so many years (there were talking animals back there and this lion kept having god delusions) I sympathise but...pah.
So so far we have vanishing date, asexual aspies and captain closet.
My love life sucks.  and not in a good way.

Meanwhile my clavicle is ejecting slowly.  the left one is moving in and out of the sternoclaicular joint by about a cm with a resounding clunk.  and at the acromioclavicular about 5mm with a glonk.  turning the steering wheel goes clunk-glonk clunk glonk clunk glonk scream.

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.

you don't know where you met me, you don't know why...

Well today was something of a bust.

First of all the psychologist rang and arranged to see me in a couple of weeks, not today.  He asked if there was anything he should know first...so I said read the blog.

So Hello Clarice.  Do you seek to dissect me with this blunt little tool....

Lord knows whether Clarice will bother to read the blog or not. My expectations are not great.  Pace Cathy but psychologists are the homeopaths of mental health.  they weave their elaborate placebos whilst nature takes its course.  And that is just the good ones.  The bad ones do a lot of harm.  The last one I encountered, at Luton, was a spiteful witch frankly. Tried to slap a BPD diagnosis on me because I objected to her using my first name without an introduction.  The one before that was wet as a herrings bathing costume.  And before that....well a team of them.  Inlcuding the stereotypical art therapist with pencils stuck in loose bun of hair and tie-dyed smock, the earth mother type complete with nursing babe and the one who thought he ran the place.  As Edmund once said, as effective as a catflap in an elephant house.

So why do I bother accessing these folk?  deadly combination of hope and nothing else available.  Same thing that makes people watch Jeremy Kyle.

Aside from that...I had plans this evening, which went tits up due to force majeure so i ended up going to the cinema on my own.  saw age of ultron, which was remarkably grown up though The Vision was borrowing so heavily from Dr Manhattan he nearly turned blue.

But after I left...the old sadness set in.  Rough.  All the things I am doing- they are just distractions.  Spock has been busy setting up stuff to do.  Emo is still rocking.

Something else that had me rocking was the physio this morning.  I mean ok, attractive etc.  but at one point the diagnostic tantric moves he had me doing triggered a bout of no 10 pain from shoulder.  He was flapping around saying do you want to sit down whilst i was just seing flashing lights and trying to remember how breathing went.  I didnt swear at the poor lad.

Later i went to the gym and worked out because I needed something to feel.  gym went well but then i swam...
My favourite stroke is a towing sidestroke- i used to do lifesaving back in the day.  Well as I was doing this...understand how it works, you use the lower arm to pull forawrds, the upper arm is the towing arm.  seeing as I was on my own it was floating.  Weeelll my body contracts as I stroke, a motion that would look like a side to side wave...as the left side contracted my floating ribs decided to pop the wrong side of my iliac crest.  Because I have a hypermobile lower spine and vertebrocostal joints. instant searing pain.  Then the muscles in my side spasm, wrenching my pec and shoulder, which rotates my shoulder and subluxes my elbow.  So now I am spasmed into a sideways curl, left arm not working, cant use left foot, cant lift head out of water.  floated vaguely to side and hung on.  slowly by degrees spasm eased but my god I was close to unconscious in the water.

Oh and my jaw hurts.

fckit

Be Aware, Be very aware...

So this morning sees the dawn of EDS awareness month when the zebras come out of the dappled shade and show off their stripes.
For those few readers who do not understand, a zebra is slang for a person with Ehlers Danlos Syndrome.  And if you do not know what that is...well nor do most doctors.  have a look at the link.
Also I see from my Big Brother panel that I have readers in India and Russia.  Hello!  Please feel free to pop a comment in just to say Hi.  I am really not sure what interests you here but thanks. Please note the name-that-dragon competition is still open.
Now looking for readers in Antarctica to complete the set.
Today my EDS decided to make itself aware.  I have fallen over twice due to left hip shennanigans.
I should say right out that as far as EDS goes I am dipping my feet in the shallow end.  I get subluxes but so far no frank dislocations, my subluxes often reduce spontaneously or at least easily...most of the true horror such as felt by my friend Percy (waves) is spared me so far...That said the condition is generally degenerative and there is no cure.  Consequently all I am doing is sticking my elbows out to slow my slide down the Helter Skelter.
So what does the light end of EDS feel like?
Well it hurts for a start.  Lets kick off at midnight- I will normally be asleep, having taken some form of meds to assist.  My shoulder will sublux around 1 am.  So I will be forced to roll over gently to stop the screaming pain, then turn onto the other shoulder.  Give that 3 hrs  and the same thing happens.  So I get a nights sleep in episodes of pain.
The alarm goes off and I need to get Foal to school.  I roll upright and concentrate on my legs.  My shoulders will normally pop back in once I am upright but the hips and knees- I use muscle tension to stand then walk like Herr Flick of the Gestapo, not using hips or knees, and wake foal.  Then I do a set of tensioning moves whilst holding the bannister to get hips tense enough to work.  Then I get dressed.  I used to have a shower at this point but it took too long and hurt too much so I now do it later at the gym.
Getting downstairs is scary.  I do it every day but it terrifies me and I never do it with Foal in front of me.  You see EDS means my knees and hips can and do give way randomly.  It feels like your leg is suddenly not there, the same feeling as when you walk up a staircase to the top then try to step on one stair too many, one that doesn't exist.  The body-shock that gives is the same.  If this happens I end up on the floor.
Downstairs I pootle around getting stuff ready.  Holding anything is very hard because grip pressure triggers pain in my finger joints.  Imagine everything you gripped being very hot.  You know, you can pick up hot things for a short time just fine, but then the pain builds up...?  that sort of thing.
Walking at this point is also tricky.  the muscles arent tense enough yet.  this is when I fell over this morning.
So once I have my cappucino and yoghurt sorted I sit and take my pills.  At the moment Indomethacin and Pregabalin.  The first was something of a revelation.  before taking it I was in a wheelchair.  Now, some days I look normal.  Pregabalin is a wierd one, which for me turns pain into itching or tickling.  any port in a storm.
Like many chronic pain patients if you asked me where it hurt I would think for a bit.  EDS comes with two levels of pain, the chronic and accute.  Accute is when a joint gives way and screams at you.  Think stubbing your toe x6, or being kicked very hard in the balls.  Chronic is there all the time.  At the moment my chronic pain joints are: left wrist, right elbow, right fingers, left ankle right knee, both hips both shoulders, thoracic spine.  They all hurt.  But I am adept at blocking them so it is only when I think about it that I notice.  Of course my body knows, and is exhausted by it.  That is why opiates are soooo goood.  When you take them you get immersed in a fluffy bath of  nopain.  I am currently opiate free, after years of being on them.  it was for complex reasons, including I thought it would save my marriage.  Ah well.  I am not averse to taking them again but I want to see how long I can exist without.
Throughout my day my phone goes off to remind me to take my drugs as they are not SR.  My phone is my pusher.
It takes around 30 mins for the drugs to kick in, so I have to cope with the pain al the way to Foals school.
My days vary.  I can do lots of things.  Some things hurt.  typing, for example is very painful to arm joints and spine.  But mainly it is transitions that hurt.  When i stop doing one thing and move.  This is because my joints have relaxed and moved into a position to accomodate one thing, when I ask them to change they realise they are not in their proper places...Never startle a zebra because if they cannot plan their motions they fall apart.
Just think about that for a minute.  Imagine that you MUST, MUST plan every movement.  No spontaneous moves, on pain of, well, pain.  How many times a day do you catch a falling object on reflex, or flinch, or duck, or sneeze, or come?  All of those can put you in hospital
At the end of the day I am exhausted from having to pay attention the whole time.  but the attention I have to pay keeps me awake.  So I start to relax...and then cannot get up because hip/shoulder etc.  Eventually I lever myself into bed.
Rinse
Repeat.
Now that is a good day.
Today is not good.  I have a very bad spine, hips unstable, elbows on fire, TM joint hurts.  It is all a bit shit frankly.
never mind.
Happy EDS awareness month.  Please tell people about it.  Maybe buy a cuddly Zebra.  Or offer sexual congress to one you may meet.

Safe in my own words, learning from my own words Cruel joke,

Reason notwithstanding, the universe continues unabated.

I am running out of bottom.  Actually I have a bottom the size of Brazil but I mean emotionally and lifewise.

Avid readers will remember that my wife of 11 years asked for a divorce.  That was on a Saturday IIRC.  I spent a few days pleading, and then another mourning.  And then I thought "pick yourself up, dust yourself off, start all over again"  so I rang my boss to find out about a back to work plan.

Things at work had been strained for a very long time.  He has no idea of how much shit I tidy up for him without him having to deal.  Much of that shit is generated by his lack of organisation.  And this is me saying it.  All he sees is me not there at 9 am. I have a medical note for flexitime and I also always put in more hours than on the contract. The 9am thing matters to him because he wants to be able to pop in first thing and dump surprise work on people.  For me that is very disruptive.

Anyway the upshot of the phonecall was stay off sick because you will not have a job to come back to.

So, no wife, no job.

Still living in the same house as wife, and generally things are amicable.  But I am dying inside.  Last night she was upset with me for reasons I didn't really understand (remember I don't do social cues so I may be in the wrong and not know it.) She has made it plain that a marriage is not going to work, not in the normal sense. I am not going into details but what she said has made me hate me so much.

Before xmas I had a job, a wife, we were trying for a baby.

Now I have...a tattoo. This process is like someone taking a knife and cutting away everything I valued or self identified as and making me loathe what remains and the mess the process makes. Every night I pray I will not wake up, that I can just die in my sleep. That undiscovered country from whose bourne no traveller returns would be most welcome.

I go through the motions.  I sent out a cv.  I am thinking of getting a dog.  In my idle moments I think of getting  a bivvi tent and some second hand kit and just walking somewhere.  anywhere.

A lifetime ago I did intensive group therapy at a place called the Red House.  I then finished my PhD, got a variety of jobs, found a girl, settled down, I wanted to so I married, and I thought I was going to grow old and be happy.  But it turns out that who I was was incompatible with that.  So 20 years later I find myself in the same place, suicidal, alone, hurting, no job, no partner, no soul-mate, pretty soon no family.  the last time this happened I was still fairly young. Rebuilding a life from nothing didn't seem such a fools errand.  This time I feel like life has just finished with me.  I cannot go through all that again.  Back then I had friends.  My marriage got rid of all of them, they are strangers to me now, with lives of their own.  Here I have mrsinkys friends. And I cannot ask them to choose.  It is clear when I talk to them she feels hurt so I shall stop doing that soon.

I can either accept the mixed metaphor and do a caligula against the sea of troubles, or oppose.

The psychiatrist has me on daily visits to make sure I am still breathing.

In other news last night I fainted in the bathroom.  This follows a day of joint hell and a serious sublux in the swimming pool.

How many more hints do I need?

I saw this morning mornings minion

Well, the GP I suppose counts.
It was one of those quick visits to get drugs and paperwork, but where i really need to talk more at another point but we both know we currently need other things, like the psych assessment, to happen first.  Normally my GP visits run like an episode of colombo, with me constantly turning round as i am nearly to the door, pulling a scrap of notepaper out of my pocket and saying "theres just one more thing ...".  Ask any doctor, the most important thing comes up last.  This time it was like something particularly pensive from Harold Pinter.  So much left unsaid.  He asked how i was and i said better, but its llike a skin on a rice pudding.  It is all there waiting for the skin to break.
I sometimes wonder if that is what I am supposed to be aiming at. Just forming a skin over the cess pit and being careful where I step.  Is that normality, just pushing down the misery?
I suppose some catchup is in order.  After Tagine day we managed to get the family together to do an outing to Jimmy's Farm where they were having a science day.  It was enjoyable enough for a small attraction event.  I met some people from Coventry Uni who were struggling a bit with a TLC setup and got chatting, much to foal and mrsinky's mortification.  One of the things about my calling is how multidisciplinary it is.  I am a renaissance horse in a way and so I can drop into a lot of science setups and banter quite well.  For some reason this never goes down well with the distaff side.  We had a day where we didnt shout and we didnt fall out.  And we met the worlds least convincing emu.

That has to count as a win.

Also one of the lds at the gym apologised for mr blondee twats behaviour.

However other things lurk on the horizon.  Old fans will be aware that my typing is often a little random.  This was something \i always blamed on the opiates, which I was taking  a fair amount of.  However  I have not been taking the opiates for some while...and it is getting worse.  Others noticed previously it was always the same type of error- one spacce difference on the keyboard.  It is the same thing.  Typing like this on my laptop I can do most things, though errors pop up when i think i have touched a key but havent.  on my phone it is almost impossible.  My guitar playing...well its sometimes worse sometimes ok so cant really say.

I talked to the optician and she said its not me guv, so that leaves neurological.

the most pleasant option are things like vitamin B deficiency and also the old favourite eds which is linked to proprioceptive deficit.

the other options are....well hypochondriac.  I shall not google.  Or not again anyway :(

I am an old worry wart at times.

It is very frustrating though.  twitter is v difficult as it is.

I beg your pardon, I never ...

I like roses. There I havesaid it. Shoot me.
In .my front garden I have several of themgrowing away, and this time of years a buSy one for the rose grower as there is a lot of mucking, mulching trimming and
spraying to do. Fuck Organic. Greenfly are bastards and must die, preferably taking black spot with them.
l have finished the front for now and So can settle down and relax for my Psyoh appt. On wednesday.
Today the GPextended my sick note and said in so manywords to play nicely with the shrink and not to break him.
l have more things later. But I wanted toshow you my roses waking up.

And so we beat on, boats against the stream...

Forgive the title. The Great Gatsby is one of my most treasured reads. In fact Fitzgerald in general is but that one short novel is special. So nicking the closing line is fair game. Incidentally I couldnt bring myself to watch the film. Partly because I am convinced that Badger Boy cannot act, a conviction amplified by the 60 minutes of Gangs of New York i sat through before leaving and asking for a refund. But also because it would simply not be possible to film it.
I am not doing well. Firstly I am dreading leaving my family and heading back to work. Xmas has been traumatic (tautology) and I am exhausted. I am also suffering anxiety and panic attacks because I submitted a semen sample for analysis. Mrsinky and I have been trying for a second child for 4 years. In my current state this was a bad idea. I feel violated and judged. I want to deregister from my doctors so that i never find out the results. All very illogical but thats being mad for you.
This morning foal started at youth orchestra with her new trumpet. I took her there and oh my god....
When i was young I played the flute. It is a lovely sounding instrument even for a beginner. My parents did what they thought was good, payed for lessons etc...then at the insistence of the teachers signed me up for orchestras etc. I lasted a year, then sold the flute and didnt pick up another instrument for two decades.
Why?
Music is a form of communication. It communicates emotions to others and lets them examine them. I could not do this. I mimed playing for most of my visits, refused solos, didnt turn up to performances...in the end my parents noticing this led to the flute sale. To them i wasnt using it to perform so it was useless.
My imaginary regular reader will know the problem straight away. I can no more communicate a weakness like emotion to others than i can dirty talk in urdu. How could i make myself that vulnerable? Why would I do that? Total risk, no gain. I played the flute for self expression. But only to myself. Forcing me to play in public killed it stone dead. I was a good player for my age group. I cant pick it up now without remembering.
Today i was coping with being in a secondary school(my secondary school experience makes midnight express look like carry on camping) and worrying we were damaging foal by forcing her into a band, and all the baggage above. Then i overheard a teacher talking to a crying child, telling it everyone sang, it was fun, just join in, sit at the side, take part.....i had to run away. I was in danger of killing him where he stood.
I still cannot perform music to others. I can practice at home sometimes. And help foal on guitar. But as soon as i have an audience my fingers trip up, i forget the notes, my playing becomes mechanical. Its not nerves per se. It is a feeling of violation. Of being forced to share something i do not want to share. Same as when people want to talk to me at parties, in the brief time between when I have been forced to arrive and before i can leave. Its the same when i try to record too. Im trying out a looping pedal to see if it helps...
Add to that some bastard playing perfect day on the radio. That song makes me cry every time. It makes me examine how few things keep me hanging on to life. And how worthless they are.

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.

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.

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.