Fight the cold with rice pudding.

I am used to rice puddings baked in an oven. Thats how my granny used to do it anyway. And i always struggled to get them moist and thick. Problem is in my current stable there is no oven. So i went digging through Eliza Acton and found something interesting...you dont need an oven.
So here is my take on a mid victorian staple. Few twists but hey...

Put 4 cups of milk and a knob of butter in a saucepan. Throw in half a teaspoon of roughly rubbed saffron threads. Ideally let it soak for a while but if in a hurry you can go as is. Slowly bring to the boil while stirring. Watch it because when milk boils it froths over. Once you have it at boiling point throw in 1 cup of pudding rice and stir. You can also use risotto rice. Put it back on a very gentle heat whilst stirring. With the rice in there it should simmer ok. Simmer it and add a half teaspoon of ground cardamom.
Continue to simmer for around 15 minutes until the rice is tender. Add more milk if you need to. The sauce should thicken by itself.
When tender stir in a half cup of sugar. More if you have a sweet tooth.
If you want the sauce extra rich n thick then combine 2 egg yolks and a teaspoon of cornflour in a cup then take the pan off the heat and stir it in.
Additional tweaks...you can sl am it under the grill to get the caramelised skin. Also you can stir in dulce da leche for a toffee taste.
This pudding is strangely addictive.

Oh Fog Me

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

Brain Fog 1)

Fatigue

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

Brain Fog 2)

Cognitive Impairment

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

Brain Fog 3)

Autonomic problems

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

Brain Fog 4)

Dysthymia

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

Brain Fog 4)

Depression

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

Brain Fog 5)

Substance Abuse

Well many of us are junkies.

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

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.

A freind tackles a vulture

the redoubtable jaduc (full name there) talks about a real sweetheart.

Things are darkest...

I haven't been completely forthcoming about the last few days, because I am still struggling to find ways to express the problem.  As far as I can tell there is no way to deal with it.

4 years ago I was in a secure job at a crap university, and deeply miserable.  It really was hell, for many reasons.  Then an old friend rang me and asked if I would work for him abroad.  Permanent contract , but what appeared as a demotion.  Excellent university.  And he would give me funding support to do my own work. I said yes.

As it turned out I have a limited term contract, he has never given me funding support.

He has repeatedly got me to apply for funding on my own.  Previously I was turned down because the work was seen as his.( it isnt) This time we included a letter from him saying that it was all mine.

The granting body rejected me saying I was too inexperienced to run a grant.  I was a Senior Lecturer for 7 years, had an industrial position where i ran a team of 9 people and actually run a good deal of the work here.  But I am not experienced enough.

What it actually means is that they will not grant funding to someone with my job title, regardless of who they are.

So now I have no options left for research funding.  This makes me want to die.

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.

Folded flags

I suppose a new year is something we all think of as a place to start again. Logically this is silly of course as the calendar date has no significance at all. 21st December would be better as that is the darkest of winter. But the clickover of the year lets us yhink that things will change. Or that we will.
This is silly, naturally. If people are involved it is always silly. Also people do not change. Iknow that puts me out of line with many gurus etc but it is true in my experience. People only change when the ability to remain the same is forcibly taken away.
Gloomy thought perhaps. But I think that if we accept this and try to acheive goals in a way that recognises our invariance we will be much much happier.
This thought comes about thanks to an interaction with my boss. Relations with my boss have been strained for a while. This is partly because I have been going through a lot of issues with my disability and other problems, and partly because of mismatches in how we work and think. I had hoped to get a new start this year but I think it is unlikely. Without going into detail I had an email which indicates another year of the same shite.
What is the best way of dealing with this? My own tendency is to think that we should resign ourselves to it. I have long been averse to plans or dreams or ambitions because they give the illusion that we control our lives. So a question for you, dear reader, is this...is it better to be calmly resigned to our fate or to ride the rollercoaster of hope and despair?

A New Year full of old stuff

I have not posted of late. This is because I could either post or live.
Gosh that was dramatic. Picture me in full Elton John flounce mode if it helps.
As I may have mentioned I have a problem with socialisation. I am in effect a high functioning sociopath, or suffer from something similar to schizoid affective disorder, depending on your viewpoint.
To most people, people are a source of comfort. I am told that meeting other people and spending time with them, sharing food and drink, and living space is a source of comfort and pleasure. I say I am told because to me this is like someone describing the more outre reaches of quantum physics. I recognise it may well be true but I lack the ability to understand it myself. For me people are a threat. More people are more threats.
Mrsinky was describing a beauty prcedure to me the other day. Eyelash tinting. It involves being in a room with someone else and closing your eyes. I am so impressed that she can do this. I could not. I could do it with wolves. Or wildcats. Or mountain gorillas. In fact in mountain gorilla circles its simple politeness. Those animals are rational, predictable, trustworthy. People are not.
So take me. Add the only two people I trust, my mate and my child. Add a festival i find utterly repugnant. Then add the fact that those two people need that festival to be happy and social.
Since the 19th Dec. I have been playing a role as host, cook and gamester. I have welcomed people into my home, cooked lovely things, talked and joked, and generslly given mrsinky and foal a nice time, I hope.
I am exhausted and miserable. My stress levels are so high I am constantly on the brink. I need a holiday. I am more tired now than before the break. I hope in this next week I can get some of that.
I have been to the gym today. I am supposed to do this every day but this was the first since the 19th. My pain levels are high  and my shoulders are...well not behaving. I have much work to do.
I am trying to be positive. Honestly.
But my state of mind is fragile.
I hope that you, dear reader, have fared better. Good night, and may your God go with you.