Teusdays, and forgetfulness, and a bit of money saved

Today I want to die.
Theres emotional stuff going on i cannot begin to cover here yet but i feel worthless and so mucha failure.
But mainly...today i wanted to go back in my wheelchair.
I have been in remission for months. But my pain levels today are through the roof.  Hips and back gone. Shoukders agony. Cannot lift and hold things. One working finger.
I did all myerrands. But it has nearly killed me. Lying hurts. Sitting hurts. Only curling fetal ssat on edge of bed is pain free.
I dont want to be like this again. Bad enough failed husband, scientist, man, father. Now unviable organism again? Fuck this.

and another bit shatters

So today was rough.  Mrsinky away and so I was on foal duty again.  Foal was in a stroppy mood and it was rough.
But worse still was going to Band Camp.  It was full of Dads with multi kids, being all rugge and dependable andd part of a family.  I tried watching films on my tablet, I tried doing origami.  But my heart broke every time I looked up and comtemplated the depth of my failure.  I really am flapping around loose.  No anchor.
We went into town afterwards.  Bought a comic book each ( Guardians of the Galaxy omnibus for me.) I got a cookery book about bread.  Then on the way home got stuff for tea.
Mrsinky rang and I broke down in tears. I really am very depressed.  All the coping stuff is autopilot.
tried cooking therapy...

Homemade:
Crackling pork
Boston baked beans
(2 tins of cannelini beans, a knuckle of ham, one star anise, 4 cloves, 6 cracked coriander seeds, i tbs mustard, 4 tbs molasses.  cook 160 c 3 hrs.)
Butter toffee popcorn.(do popcorn.  heat 4 oz caster sugar in pan until it is golden brown liquid.  take off heat and stir in 2oz butter.  it foams like hell, keep it stirrred till it dies down a bt, then tip into popcorn.  stir.  tip popcorn out onto non stick paper, separate, cool.  nom)

Not Homemade: torturillas.  red cabbage sour cream dip.

Also bikkit:

heart shaped digestives
(3oz wholemeal flour, i oz plain flour, 1tsp baking soda, 1 oz oatmeal pinch of salt, 1tbs dark brown sugar 2oz butter, a little milk  oven 180c)
mix dry stuff, rub in the fat, add milk to bring together. knead on floured worktop.  roll out to 3 mm thick, cut into shape, bake on sheet 15mins till golden.

Chocolate chip splodges
(3oz plain flour, 1/2 tsp salt, 1/2 tsp baking powder, 4oz butter, 2oz caster sugar, 2oz brown sugar, 1 egg, 1/2tsp vanilla essence, 3 oz choc chips, oven 180c)
creeam butter and sugar, beat in egg and essence.  add rdy ingredientts and mix.  splodge teaspoons onto a tray, cook 10 mins till golden.  but they spread like b;ue buggery so space em out.

That was all fuel for a Lord of the Rings marathon.  Foal is loving it so far.  Am trying to explain it is the story of smeagol.  Or of Sam.  Frodo is just incidental.

It helps ease the pain for a while.  till I stop.  then it comes back.  and it hurts so badly.  I feel I am bleeding to death from the sorrow.  Is there Balm in Gilead?

Also today my joints were so bad I used a wheelchair in Tesco. I have been in so much pain.

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.

And if I say, I really knew you well what would your answer be?

So I spent most of the night grinding over the visit to the shrink.

I am currently waiting on a callback from the team.  My intention is to tell them their services are no longer required as I have lost what little faith in their abilities I ever had.

The problem is that yesterday during conversation the shrink mentioned her diagnosis of longer term issues would likely include narcissistic as a characterisation.  Quite how someone with self esteem as low as mine, with a history of continually putting others first, sacrificing career, standing and health to support others etc. can qualify for that is an interesting leap of mental gymnastics.

During the sessions of contact with the team I have rehearsed the basic problem.  I am asocial, but lack a peer group.  My brain functions in an idiosyncratic way at very high speed.  I read faster than I think, have an IQ in the dubious range where the measurement is so high it is meaningless (IQ only measures IQ though) and if I relax and speak at my ease only 3 people I am aware of stand a hope of keeping up.  The boss who just sacked me will cheerfully refer to me as the brightest person he has ever met (He has worked for decades in Universities classed as top ten in the world) and the guys at Cambridge refused to do pop quizzes with me in the room because my brain was cheating.  My peer group in the intellectual aspect ( emotionally I am a stunted toddler and physically...my 9 year old daughter can whup my ass at 10 pin bowling) is a disparate group of similar hermits scattered by the vagaries of genetics.

Of course the shrink sees this and instead of trusting me, believing what I am saying as simple truth I can back up with evidence and helping me cope with the grinding loneliness assumes that this is an exaggeration, that I am self aggrandising.

This is so much like every other interaction I  have had with psychologists and psychiatrists and so disappointing.  Time after time I reach out honestly and display the problem, to find them treating me through a prism of their own distrust and limitation and trying to label me as something that denies what I am so that I fit into their world.

Enough.  No more.

The truth is that a long term diagnosis would be career useful but I dont have a career.  The shrinks short term diagnosis of adjustment disorder is plausible, but there is no treatment beyond "taking it day by day" which I have been doing for 34 years so fuck that.

It was foolish of me to expect more.

Chasing the dragon

OK so today dawned.
I tried to persuade it not to but it did so anyway.
Although I am nowhere near as afflicted as me good friend Percy sleep is the time when the evil pixie of EDS comes out to play. It's a bit like the E.L. Wisty sketch about old men coming into your room and throwing rubbish on you. In my specific case this rubbish is normally manifested as subluxed shoulder or knees.  I lie on my side, being unable to sleep on my back. This means one shoulder is compressed, and oer time slides sideways out of its socket.  eventually the pain becomes unbearable and I have to move, then whimper, then put it back in, turn over and start again.  Also because I am on my side the top knee is at a funny angle and so...you get the picture.
Last night was bad and I slept little.
However I have to say this morning, tho  rushed, I feltt ok.  The sedation from Mirtazapine was not so strong.  Also my mood was lifted because today was tattoo day...
I am a tattoo virign but frankly think they look awesome on the blokes in the gym.  So I booked with the lovely Terry Parish of Drawing Blood and had him stick an oriental dragon across me.  After consultation I had it draped across my shoulder.  I got him to make the claws look like they were digging in to my shoulder.  Why?  That dragon is how my nightly shoulder pain feels.
Anyway, here it is.  I will need another session to get it shaded in but I personally think it is lovely.  So there.
Terry was astonished at how well I sat.  He kept asking if I was OK.  To be honest I was nearly asleep.  It was so much less pain than I am used to.

Guten Tagine

Yesterday was rough.
Mrsinky has been unwell and at home, so I stayed at home during the day instead of hiding in Costa or wherever. I made a start on the garden, a task I have long put off.
But to be honest my mod was up and down like a rabbits arse in mating season.  every time I stopped or some trigger came on the telly or whatever the tears would be running down my face.
So I kept at it and kept active and felt like shit.  eventually I wore myself out.
Today was better.  so far, anyway.
But one of  Mrsinky's friends is depressed so she is sleeping over tonight.  so I ma cooking.
Foal and I had meatballs tonight but as part of an attempt to educate her palate we did a moroccan meatball tagine.
I have used fresh lemons here but you can use the preserved ones.

You will need
12 beef meatballs
an onion, chopped
a can of chick peas
the rind and juice of a lemon
6 oz of chopped dried apricots
a chopped aubergine
2/3 pint of chicken stock
3tsp harissa paste
olive oil

first of all i cal anathema on the inventors of soft dried fruit or ready to eat dried fruit.  not only is it way too soft to be an enjoyable eat it is filling the shelves with uncookable ingredients.  enough.

fry the onion hard in olive oil till the edges blacken.  then fry the meatballs in with the onions till they too brown.  add the harissa paste, then  fry a minute then the stock.  use a potato peeler to cut long strips of lemon zest, then add them and the juice.  add the other ingredients.   put a lid on and cook t 140 for an hour.
serve with flatbreads.
Foal says: It was nice but aubergines are bleeeeh

Personally it was one of the best I have done.  lovely.

Also pictured are my derby scones.  every time i go to the kitchen i get requests for these.  So here goes...
oven to 170C

1lb SR flour
2 tsp baking powder
4 oz melted butter
1 egg
5 oz caster sugar
5oz currants
1 large pot buttermilk
milk and demarara sugar for topping


put dry ingredients in a bowl.  work in the butter until breadcrumbs ( ok you could do the traditional breadcrumb thing but my hands wont and this works.  Comes from eliza acton)
add the egg, then the buttermilk to get a soft dough.  flour a surface, tip out ontoo it, flour the top then work lightly.  pat it down to about n inch thick then cut it out, reshaping and patting as necessary.
decorate the tops by painting with milk then tipping on a thick layer of dm. sugar.  this must be thick enough so the top does not wet.
cook for about 15 mins until brown and firm.

So thats tonights first bake.  I am doing laundry too.  but i will be doing more thought avoidance laer.

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.

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.

On pain, brains and drugs. And Vultures

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

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

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

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

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

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

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

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

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

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

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

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

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.