Monday, December 10, 2018

Counting Down to Christmas

A quick update while we have been fighting unjust and fraudulent actions of a third party with legal advice, NZ's Health and Disability Commission, https://www.hdc.org.nz/ the Privacy Commission, https://www.privacy.org.nz/ and advocate help. It is a nightmare to occur at the same time as income is tight with only enough "rent" to pay for flooded basement dwelling up to Christmas, enough money for food for another couple of weeks and notice to move but with no home options we can move to. All with the encroaching Christmas shutdown coming. Where from next week all the way near the end of Jan almost no services & business operate as normal, they often are on graveyard shift duties only or worse yet, full shutdown.

 
I feel an anger welling inside as this third party sought to manipulate and threaten hubby when they knew of his cognitive impairment and they were the ones in the position to manage his recovery. They perpetuated provably false information, doxed our private details online and added some provably false ones (that we have clear documents & NZ dept data to disprove it) and continue to lie even when clear proof is presented. Breaking the privacy act in NZ and their orgs code of conduct multiple times & in such a clear way breaking the core. They did this because they know both Daniel and I are too disabled to properly fight or even pick up on most of the breaches of code. It seems like these actions where any reasonable person would expect at least a reprimand, but in the industry they are in they may get a bonus for their efforts in abuse and disempowerment. They are rewarded for abuse of disabled people and thankfully our contact with the industry before was limited until now.

There is nothing my anger can do but wait, there is nothing I can do but maintain calm contact, get legal help, keep abreast of rights, reading past cases and legal reports, manage developments and look for a home. Somewhere, anywhere,... will we be able to afford somewhere? I have isolated hubby as much as I can so he can focus solely on his recovery, I try to keep him abreast of the main strokes but even a 5min chat can tank him and his memory is still quite bad, forgetting many things and appointments still. I can sacrifice my own energy, health and efforts but I too have been tanking more. It is severely depleting when I need to manage our finances, our lack of safe housing, our legal actions, my ME, the orthostatic issues, the emotional anger when someone you love has been manipulated and abused in such a way and a crippling depression that can occur when it becomes too much and I cannot yet see a way forward out of this. I don't know yet how to make it ahead.

I am a planner, I plan for likely eventualities in detail. In a way this innate desire to plan for things has saved my life so I let it continue now. In case of the hit by the bus effect, (tech term for having human redundancy when a critical staff member becomes ill), I plan to leave in a safe place for hubby my logons, bank details, investment details (inaccessible due to access restrictions by govt to wait for 65 years old), email and account logons, our files and documents sorted. Even getting him a copy of his files & notes he can access. I intend for him to have a copy of my medical stuff to reference, legal stuff like wills etc. Prepare. We are in a terrible storm, the security of our home was pulled long ago. We now have to fight our way through it as the storm threatens to pull us from the ground. I try to give hubby the best chance of us both as I know medically he has the best prognosis. He could recover soon, he could get medical help, he could improve where I cannot, (though not for lack of trying).  I therefore place myself as the sacrificial metal, to take on anything that may impede his recovery or fatigue him so that I corrode instead of him. I try to insulate him from tasks that are beyond his ability at the moment.  

Christmas does not exist in our home this year and will not for some time. We have not been able to contact family much at all due to the increased effort and energy expended in legal actions. We have had more days where neither of us can make food on a given day. Just as well there is at least one place that can deliver food we can eat sans allergens at night. In NZ just having one or two restaurant deliveries is lucky, most areas would have none that can deliver and cater for allergies & dietary restrictions. Hubby could barely even see family last Christmas and needed 2-3 days to recover from even a simple dinner. Now perhaps the dinner would not be as bad. We have been practicing having a family dinner and had a couple successes. I anticipate he might be able to have the same as last year, maybe go to one dinner, maybe not given the recent demands on his energy and ability.

 
There is a hope that after Christmas if we can pull through I might find us a home, hubby might be able to get to a part time role to help, and the wait lists for specialists I have been waiting on for years might actually result in an actual appointment and treatment. I suck at waiting, being powerless, being trapped. I need to be able to do something effective, even just mental preparation, reading fellow cases. Steeling myself for what is to come. I also need to defuse the energy and anger.   

If I don't laugh I would cry. If I don't see humour & hope I see only darkness.

Douglas Adams Hitchhikers Guide to the Galaxy described the perils of bureaucracy and apathy well in humour. Terry Pratchett described the every man facing unnatural malice in humour. The Monty Pythons and Red Dwarf... they had vignettes and songs a plenty.

Some things in life are bad
They can really make you mad
Other things just make you swear and curse
When you're chewing on life's gristle
Don't grumble, give a whistle
And this'll help things turn out for the best

And, always look on the bright side of life (whistle)
Always look on the light side of life (whistle)

If life seems jolly rotten
There's something you've forgotten
And that's to laugh and smile and dance and sing
When you're feeling in the dumps
Don't be silly chumps
Just purse your lips and whistle, that's the thing

And, always look on the bright side of life (whistle)
Come on!
Always look on the right side of life (whistle)

For life is quite absurd
And death's the final word
You must always face the curtain with a bow
Forget about your sin
Give the audience a grin
Enjoy it, it's your last chance anyhow

So, always look on the bright side of death (whistle)
A-just before you draw your terminal breath (whistle)

Life's a piece of shit
When you look at it
Life's a laugh and death's a joke, it's true
You'll see it's all a show
Keep 'em laughing as you go
Just remember that the last laugh is on you

...

Friday, November 16, 2018

Lemon, Fennel and Ginger Spiced Chutney


 Image from recipe at The Spruce Eats website

In that the question what to do with citrus skins and excess lemons from a local tree that cannot be eaten in season and to reduce food waste is answered with a tasty, spicy option that goes great with ham sandwiches, salads, crackers & hard cheese, on top of curries and in general other food.
 

Generally long term chutney preserves are fruit or veges, vinegar, and sugar cooked down to a chunky reduction. Chutney is a popular condiment and a great way to use up or preserve excess fruit and veges. The key elements in any chutney is the vinegar, sugar, primary fruit or veges and spices, while salt is key for other preserving operations. Earlier in India chutneys were instead short term relishes that had little to no preserving elements so they often needed to be prepared and eaten rather quickly and did not store well. But in many ways Indian chutneys have shifted to include more preserving elements to allow production at a larger scale, shop sales and home storage. Whereas a good restaurant or home cook may make theirs fresh and either eat it all quickly or toss and make more.


I had found a recipe that suited the more safe spiced flavours I was looking for.

From the Spruce Eats recipe for a Spicy Lemon Chutney

Ingredients:
    10 to 12 lemons (about 3 pounds or 1 1/3 kg), plus 2 or 3 more for juice (see below)
    2 Tablespoons salt (kosher)
    2 cups brown sugar
    6 garlic cloves (minced) <-- Note this is removed in mine due to allergy
    1/2 cup dried currants <--Removed due to digestive issues
    1/2 cup lemon juice
    1/2 cup cider vinegar
    1 to 2 Tablespoons fresh ginger (grated)  <--Note this & below is amended to safe personal spice mix
    1 teaspoon coriander seeds (crushed)
    1/2 teaspoon cayenne
    1/2 teaspoon red pepper flakes
    4 half-pint (8-ounce) jars and lids

Collection of the spice mix at home pre ground cinnamon, nutmeg, clove, green and black cardamon, coriander, allspice, pepper and bay leaves however the ground versions are easier for my ability  

Although I use no garlic due to an allergy. Also to aid in decongestants I increased the ginger ratio so it was more a lemon, fennel and ginger chutney. I love ginger and my gut seems to agree which is good. My gut and ME had already taken garlic from me... I love garlic, but it no longer loves me. In addition I adjusted the spice ratio with my own: cloves, nutmeg, allspice, coriander powder instead of seeds so it is easier to eat, garam masala, chopped red chilli and of course the ginger. Garam masala is its own spice mix of peppercorns, cloves, cinnamon, mace or nutmeg, black and green cardamom pods, bay leaf, cumin, coriander but it is all pre ground which is good in case you were not planning or able to spice grind for a bit.

When ground the separate elements of garam masala can be indistinguishable so to better identify if there is a specific allergy or intolerance the unground ingredients can be tested in small amounts along with the ground product.

In case of unknown allergies or intolerances it is best to do an allergy skin test, then a reduced elimination type diet to test each of the spices in controlled forms to see if a reaction occurs or if your gut agrees with them (note: skin & allergy reactions are often fast while some dietary reactions can take a couple of days to develop). In many cases I was lucky compared to some with ME I just primarily lost alluims, (garlic, onions, leek, chives), gluten, a few other spices, some other vege & fruit types, (e.g. skin of fresh figs) and some types of legumes. I needed to avoid them due to IBS, new intolerances and new allergies.


There is always the chance I find more that I can no longer eat which is why hubby and I have tended to stick with what we know is safe, then safely look to try things that previously did not have an effect before ME but now need to be retested on an IBS, intolerant and allergy prone gut. Blergh that bit is annoying. Beforehand things were simpler and quicker. Not to mention I can no longer buy most prepared foods due to the gluten and alluim issues as onions or garlic are used in almost all sauces at restaurants or supermarket products and gluten is a significant core in many foods. Even gluten free crackers can have seasoning added as 'spices' and they become bullets to the gut, skin, and lungs. Hence we make our own chutneys and preserves, that way no hidden garlic or onion to surprise (because anaphylaxis is a dangerous but present risk).   

On the note of finding the ratio of key elements for the chutney:  
The Sugar and Vinegar Ratio to Lemons
The original recipe called for 2 cups sugar to 3 pounds lemons. At that point, already without a sweet tooth, I would be of the view 'Whoa, hold it there, are we making something closer to jam', However this would be a more spicy than sweet chutney and often any fruits have sugar as well. However since this is a chutney preserve for long term, not a puree, the sugar, salt and vinegar are critical. 

But with 250g lemons how much sugar was used and how does that compare to the recipe?

I will check with some really rough calculations via the phone sans the spices.

3pounds is roughly 1.36kg

A cup of sugar would be approximate to 200g. Hence 1 kg would contain 5 cups, 1.36 kg would contain 6.8 cups 

2 cups compared to 1.36kg is a ratio of 2:6.8cups, 0.294, or 22.7% of the total 1.76kg i.e. a little under a third of sugar compared to lemons, or about a fifth or forth of the total mixture.

I used 4 tablespoons of sugar, to accommodate any extra I would used 5 tablespoons in the calculation.

There are approximately 13g in my tablespoon so 5 of those would be 65g, compared to 250g of lemons that would be 65 : 250, 0.26, or 20.6% of the total. Which is at most still under the amount of the recipe. When I use closer to 4 tablespoons I would be especially under but if they were slightly heaped they would be closer to just under so a reasonable test with my low sugar tastes.

However in comparison Nigella's website lemon chutney recipe, had a higher sugar ratio with 3 1/4 cups sugar, 813mL or around 638g (using sugar ρ = 0.785) to 2 1/5 pounds lemons i.e. 1kg. Which equates to a ratio of 0.638 a little under two thirds sugar compared to the lemons, or around 39% of the total 1.64kg, around 2 fifths of the total mixture. Clearly I preferred the recipe with sugar on the low side, not needing the sweetness aspect, but for most British tastes there is a significant sweet tooth.

I did the same likewise comparing the ratios of vinegar to different recipes.


In many cases if the sugar was there only for tastes then the sweetness can be acquired through other means, e.g. the sugar in fruits (which can be extremely high in sugar content), sweetness in caramelised fried veges like onions, sweet substitutes like agave or stevia, other sugars like honey and maple syrup, etc. However when it comes to preserves elements like vinegar, sugar and salt are often core because of their chemical reactions including acting as preservatives & offering structural benefits, not their taste. Likewise salt is not used when curing meats and fish because people solely want to taste salt, (as the ratio of salt to meat is on the high side), it is done because it preserves the meat for longer (most the salt is brushed off anyway as it is there to draw out the moisture). But while some salt, sugar and vinegar is needed in long term preserves some with a sweet tooth can find themselves needing a tad more sugar or sweetness to make the recipe palatable. Thankfully I tend to just need a little to make the recipe a viable chutney preserve. Even for me getting to the same approximate amount of the recipe seems a bit sweet.    

Preparation:
The fennel was the easy bit, I took off a couple of layers and finely chopped them with a mandolin and then diced. Like an onion, fennel forms white layers around a central core and the top grows shoots of green fennel fronds.
I had been pre preserving, storing the lemons with some sea salt in a sealy bag so they were somewhat pre salted. I juiced and de-seeded them, taking care to keep the juice ready for later in a separate bowl. I took any excess pith off as best I could, (thankfully the lemons had very little pith). I also added a lime I was preserving with the lemons. Then the skins get finely chopped and diced. In a photo below I have shown another bag that has just been packaged to store. I then finely grate the ginger and put it aside to add later.


I fry the fennel in a pot so it slightly caramelises. Then I added the lemon & lime skin and ginger into the pot and fry a bit. Then add the vinegar, spices, lemon & lime juice, sugar etc and cook down until the wet mixture thickens and making sure all the sugar has dissolved.

Finished :)
Now at this point I know the chutney may sound unusual to those who prefer to buy their chutneys in squeezy bottle sauce form from supermarkets, and sour & spicy tastes are treated like the ugly duckling in their diet. But I then do something that even those familiar with the spiced lemon chutney recipes may find unusual. I added some chopped walnut pieces for added texture. I know it is an odd experiment. I once thoroughly enjoyed a fig and walnut chutney so much I found that the added walnut to this lemon one would be quite nice, to my tastes.

Finished and confirmed tasty ready to try with dinner with a couple of the ingredients and a kitty shown alongside.

Key phrase 'to my tastes' and I know they are weird after this much time working around odd diet restrictions and illness. I fully expect anyone else to make their food to something more to normal expectations, especially to serve to others. In this case I know the only ones to eat this latest experimentation to be myself and perhaps hubby. It takes any pressure to met others tastes away and also to accommodate the learning process where faults do not get tossed out unless they are completely inedible like pyrolyzed rubber. Perhaps I will hit a recipe variation that would be more welcome on a shared afternoon platter but at least for this one we have the tasty chutney all to ourselves.  

Wednesday, November 7, 2018

Redshifting to Linux Mint

It has been a busy couple of weeks, mentally as tasks I usually would be able to handle as path of the course before ME had become more difficult to muddle through with migraine blurred vision, pain and a gastric bug.  As my computer Utwig had been straining under the yoke of Windows 10 and another forced update brought more instability, crashes and corruption it was becoming time to bite the bullet.  I had to backup & migrate a terrabyte of data and install a Linux operating system distribution.


Ok for starters I had named my computer after the space race Utwig from the game Star Control II The Ur-Quan Masters, because they were the most pessimistic and grumpy alien race, constantly wearing masks, like the Mask of Gruelling but Neccessary Activity to demonstrate emotions as their speech would drone on.  It fit working with the operating system Windows 10 to a tee.  I had to use the Windows 10 operating system when working in software engineering for the clients stack I was working with.  It felt clunky, slow, and monolithic.  But I was holding on to it as a symbol and state of my old work life.  A bit silly I know, why hold on to bad tech to remind me of how annoying it was when I was working with it.  Might as well move to brighter pastures that at least can run an update when I choose to over a minute without dying.


There are many choices in Linux, with different interfaces, drivers, support and features.  All free and available in easily to install forms.  So which distro was to be the next stage for my poor laptop, previously burdened under the mask of Windows 10.  In this case hubby and I had a few better experiences with different distros and decided for a mixed dev environment Linux Mint would be good to try for a bit.  With ME I have had issues trying to manage any tech level work again so the migration took several days and a couple drives died in the process.  Then a quick install and it was hello to the new interface, (and much better running speed).


But what to call this new incarnation, it was no longer a burden, it was fast, clean, easier to configure and update.  It gobbled new tasks eagerly.  Also green.  Keeping with the same name theme the new build seemed to name itself as the Supox, a race of highly intelligent semi-carnivorous plants, who lived quite close to the Utwig and were good friends and allies to them.  The Supox were highly scientific and self reflective, accepting their unlikely origins.

Linux Mint is very reminiscent of other operating systems, an easy clean move  in that many things are where you expect them and indeed much cleaner than Windows, (with its 4-5 settings locations which contradict each other).
  
So onto the next tough task for the time a few days later, configuring the new device to reset a few settings for day to day use.  Security and encryption, check.  Migrate data back and install apps, check.  Browsers, check.  Adblockers, check.  Spend a couple of hours working out why the Synaptics touchpad was now simulating a non existent middle click in every application leading to random window and browser closures when trying to select them, and repeated pasted text with every mouse click.  Then work out how to switch off the middle click simulation at start up, check.  Add custom css to the browser UI to remove the pointless space hogging thumbnail in the bookmark popup, check.  Add an application to display the temperature sensor readings, check.  Great almost there.  There are ways to spin up a virtual environment so some of the Windows only apps could be run later but since I cannot focus on house design, engineering, coding or games lately no rush to dip into Windows again soon.  The apps only really work in a stable manner on Windows 7 anyway as Windows 10 was another nightmare of crashes and critical disk usage. I could leave installing and setting up a virtual Windows 7 environment. Say to when I am more recovered.

After a couple of days my headaches were quite unmanageable and I had been overdoing even the small amounts of the migration so far.  My eyes hurt and the screen felt painful even using a dark theme, and lowest brightness.  Now on Windows 10 there was a display setting I was using called Night Light, which was to reduce the blue light & colours displayed more into the red spectrum.  Both hubby and I use this feature to a high degree as screens which are needed for all work, media, communications on phones, work, outside screens around town often hurt at higher brightness & colour temperature settings.

As an example Gunnar's Phantom model gaming glasses to reduce eyestrain

In fact early on when hubby was recovering from his concussion brain injury, trying to recover and return back into coding he was finding the headaches from the screen glare especially hard.  His occupational therapist recommended yellow tinged gamer glasses, (much like the glasses used by skiers and snowboarders to reduce the glare and damage to eyes from the light bouncing off the snow and ice).  With special lenses these helped quite a bit to reduce eye strain and headaches.  But also on top of that when he was on his computer he would use the app Redshift which helped quite a bit when he had to switch to his reading glasses for coding.

An extreme example of difference in colour temperature of a screen.

He had never configured Redshift though and since he did not have migraines the effects of the basic default settings were suitable enough.  So for me to set up Redshift I needed to do some more research on setting the start up config, fixing a few no screen errors, and even moving both the evening and daytime setting further into the red spectrum as when a migraine hit, any light let alone blue light was painful.  A few false starts, (I was selecting separate screens and set to automatically update night time based on geo location), changes in startup config location & tests and Redshift was now configured.  The laptop was mostly restored, rebirthed and no longer felt like eye gouging.  Now for a background image from free wallpapers.

A Snow Leopard?
A Tiger?
A White Tiger? 
All rare extremely endangered species well on the way to being extinct, better get my looks in now before they are gone due to human poaching.

Thursday, October 25, 2018

I Don't Feel Like Dancing

No sir, no dancin' today.

 Older sneak capture by hubby of me kipping with a kitty back when we had a couch

A least I am not the only one curling up undercover these days. Our grey old lady Mudgie cat is good company and keeps up with the play. She's a lovely muesels who has lots to say. She is the most diverse communicative cat we've known. Her vocal range is quite big considering wild house cats barely meow and even our previous pets did not have such a range.

When we first got her she needed a home free of other cats, an especially calm environment and few people. Her two owners were leaving, one to LA, USA and one to a retirement home. She was petrified of builders or guys who looked like builders, or people with ladders. Every time someone new would come near the driveway she would run and hide and so I needed to help her with her fear. I would pat and calm her just before she bolted or afterwards, although it took over a year before she stopped being as afraid of new people. She would have the worse nightmares as well. Kitty dreams that would have her wake up petrified and angry. Sometimes jumping a foot into the air from sleep.  

Mudgie and her swanndri (NZ classic farming & bush shirt in plaid) 

She still likes to occasionally hide from builders & tradies when they come too close, but otherwise she will calmly sit where I am or sleep by me. Meows plaintively when I am gone looking around for me in a way hubby asserts sounds like him calling me too. Seems like she has adopted me as her primary human and in helping her with her fear I helped myself to adapt. I too had a fear of certain people coming to the house after an assault. I couldn't run and hide in a wardrobe or hole in the ground. So helping her face her very distinct fear I helped recover in part from my own. We were both a calm touchstone for each other. Now her in her heyday with kidney issues & weight loss and me with my illness we are helping each other again. She is keeping me company while I have a bad migraine. Even with the cat like yoga and cuddles.



Wake up in the morning with a head like 'What ya done?'
This used to be the life but I don't need another one
Good luck cuttin' nothin', carryin' on, you wear them gowns
So how come I feel so lonely when you're up gettin' down?

So I play along when I hear that favorite song
I'm gonna be the one who gets it right
You better know when you're swingin' 'round the room
Looks like magic's solely yours tonight

But I don't feel like dancin' when the old Joanna plays
My heart could take a chance, but my two feet can't find a way
You think that I could muster up a little soft-shoe gentle sway
But I don't feel like dancin', no sir, no dancin' today

Don't feel like dancin', dancin'
Even if I find nothin' better to do
Don't feel like dancin', dancin'
Why'd you break it down when I'm not in the mood?
Don't feel like dancin', dancin'
Rather be home with no one if I can't get down with you...

Cities come and cities go just like the old empires
When all you do is change your clothes and call that versatile
You got so many colors make a blind man so confused
Then why can't I keep up when you're the only thing I lose?

So I'll just pretend that I know which way to bend
And I'm gonna tell the whole world that you're mine
Just please understand when I see you clap your hands
If you stick around I'm sure that you'll be fine

But I don't feel like dancin' when the old Joanna plays
My heart could take a chance, but my two feet can't find a way
You think that I could muster up a little soft-shoe gentle sway
But I don't feel like dancin', no sir, no dancin' today

Don't feel like dancin', dancin'
Even if I find nothin' better to do
Don't feel like dancin', dancin'
Why'd you break it down when I'm not in the mood?
Don't feel like dancin', dancin'
Rather be home with no one if I can't get down with you...

You can't make me dance around
But your two-step makes my chest pound
Just lay me down
As you float away into the shimmer light...

But I don't feel like dancin' when the old Joanna plays
My heart could take a chance, but my two feet can't find a way
You think that I could muster up a little soft-shoe gentle sway
But I don't feel like dancin', no sir, no dancin' today

Don't feel like dancin', dancin'
Even if I find nothin' better to do
Don't feel like dancin', dancin'
Why'd you break it down when I'm not in the mood?
Don't feel like dancin', dancin'
Rather be home with no one if I can't get down with you...
I don't feel like dancin', dancin'
Even if I find nothin' better to do
Don't feel like dancin', dancin'
Why'd you break it down when I'm not in the mood?
Don't feel like dancin', dancin'
Rather be home with no one if I can't get down with you...

Friday, October 19, 2018

Cooling Off the Calamity

Finances tight, losing home, partner stressing and angry, family drama, friends feuding, work projects stalling, debt collectors.  It can all feel like it is closing in sometimes.  Heavy clouds, lightning and thunder.  Yet when chronically ill it is vitally important to keep my own balance & health, to be an eye in the storm.  To look for solutions when I can, or to move with the storm when I cannot.  I can and must look forward and reduce the noise and drama spiralling around me.  I write this as another set of critical medical and financial supports hang in doubt and it may look like our lives are at another loose thread.  I write this not as a prescription but as a touchstone.

I do not need to avoid people and the world but to create a calm centre that cannot be hurt so that I can better help them and stay healthy.  Even when the worst of hubbies frustrations with his injuries spill over I can still be there to help him.  When we got hit by the truck and were still in shock days later I still had to get to work and carry on.  When family & friends drag us in to feuds and sides are being drawn I offer emotional support but do not engage with the drama.  If I was as ill as I am most days now those moments of drama do need to be reduced and the emotional output into them needs to be carefully controlled.

Imagine you have someone you love screaming and yelling on the other side of the door.  You know going into a room you will be subjected to insults and their expressions of frustration and pain, but they need you and are only doing so because they are at a moment of crisis.  So of course I go in to help but I need to remind myself that sometimes humans are more like hurt animals backed into a corner.  They say things because they are hurt and frustrated.  They can be their own worst enemies.  I let the words wash over and try to reduce the emotional overload.  I try to focus on the critical priorities.  Checking for serious injuries & damage control.  Is an ambulance needed?  How conscious is the person of their position?  Can they work their way out or do they need help?  Get into a safe recovery position or sitting up, help them restore emotional control.  Take rest breaks with arduous tasks e.g. offer a calming drink like a cup of tea and take a rest break before assessing whether standing was appropriate at that time.  Sleep to aid emotional stress recovery.  Tea has a well known calming & even caffeinated effect, but then each culture has their own equivalent calming drink to help steady the mind.

A UK ambulance similar to the NZ ones. Image by Owain Davies
For a while it was multiple times a week hubby would fall, have a concussion, get angry at himself, become critically depressed, or there would be a serious and taxing event.  These things were something I tried to help him through.  I would learn not to lose my own emotional control to an event, but to build up a sacrificial layer (like with metals & acidic waters).  One metal is more reactive to another so as a coating it gets eaten by acid first and thus there is less acid attacking the core metal.  Holding that core safe.  It is important to identify what effect some emotions & events have on me, to identify the reasons behind them and how to neutralise them.  When hubby was angry due to an injury he was more angry at himself and in pain even though shouts could be hurtful.  With repeated concussions the anger can spill over and likewise he would yell at himself to try to get adrenaline to stand up with help.  These are the sorts of cases where I could see his pain, even sometimes his depression and help.  I could clearly identify the emotion, the output, the reason behind it, the effect on myself and neutralise it.  Sure the some things would emotionally hurt, I would ache as well seeing someone I love in pain but this too can be recognised and understood so that the key priorities to resolve a situation are in the forefront.

Often hubby and I would have arguments, but then so does every couple under stress.  It is a key element to remember that.  If we did not argue on something we would not be different people, with varying views and emotions.  I love him with his view of the world and he loves me for mine.  We enjoy different things, we enjoy long discussions on concepts and events can have different emotional weights.  Often our arguments can even be about differing engineering and scientific approaches to take; life's little optimisations.  We could even argue on something we both agreed on but on the terminology used.  Not only that but for months with the brain injury even a simple dinner was so emotionally strenuous for hubby.  However for me my mind enjoys dinners with friends and family, they are not emotionally strenuous even while being very ill.  My body just seems to now act as a limiter, I cannot go past a certain level, time or manage to travel.  Differences can happen with family members & friends, each can act unaware of their effects on others during moments of stress.  The key I found was to identify the direction to move on in and move on.  If that person is too hurtful all the time, unapologetically so and without good reason, I create distance.  The paths people take can entwine and share the same space for a while but then they can branch out and diverge.  Part of the path of life.

A snapshot of blood on a kitchen floor. Except there were some stains and emotional effects that do not clean easily. Image by Eco Bear Biohazard Cleaning Company
Some family members & friends we had to create sufficient distance from for our own health.  One case particularly because they were causing epic levels of emotional and financial damage in our home and would not stop.  Creating multiple dramas which even at an arms length would hard to maintain calm in.  I remember coming into the kitchen one morning, seeing it covered with blood & spilt alcohol, something which was left and ignored until I stepped into it.  I often have a seizure unfortunately due to particularly bloody moments, even a small blood test.  But while I would support someone with help offering stable housing, listening, emotional support and assistance with getting medical support and counselling etc I could not countenance threats to other people of violence and would not support someone when they did not want to get better but drive further into addiction past the point of any return.  I would work on leaving on good terms, be cordial but manage expectations and identify clearly that we could not afford to continue, emotionally, physically, financially.  It is one thing to help someone out of self destruction, it is another to follow them into it.  I would always offer support in health to the point of my own detriment but I could not support & follow someone's journey into darkness.  Hubby and myself were fighting and struggling to keep our heads above water as it was.  Yet even while we tried our best we could not hold on without being dragged under as well.

I felt like I had failed at that point because I wanted to help but in the end could not.  In a situation such as that I could not help them if they did not want to help themselves.  It is also hard at that point for themselves to identify emotionally if they wanted help at all.

In comparison the outside dramas, bureaucracy and politics of the world can seem quite small and far away even though they can make critical differences to everyone's life.  They could in an instant change whether we have housing & income the next month, whether we can access medical care, to how long we can live for and what those future years are like.  When healthy we could spend time engaging more.  But now when ill we need to control & ration portions of mental energy to stay on top and engage where needed.  Engagement is difficult with a disability, that has always been a core problem.  But keeping emotions & energy in check is just as if not far more important.  Think of it like a bonsai tree or Japanese garden.  Everything in its place, controlled but it has nature's flexible expression look effortlessly driven.  It is looking and dipping toes in the water to do what is most needed and then returning to the calm centre in the chaos.  The clipping of a branch on the bonsai, letting another grow out, directing another to curl in a certain direction.

When just getting by day to day is hard, engaging with emotionally hyped people, with events and with the future can be difficult.  I try to portion a little visit into the storm to see where we are heading, engage but a little, but then I have to come back to the key goal of getting better.  This illness is by far the biggest impediment to our future.  I need to hold a mental space of calm, which sometimes can be aided by travelling to a physical space of calm or using sensory modulation.  Hubby too is recovering his mind space post injury and we look forward to picking what direction suits us both.  Even with our differences we want to share our paths together, even through the dips & swamps as much as the scenic spots.  It may feel like we have come upon some pretty big swamps already but there have been and certainly will be more peaks.


Flocking to the sea
Crowds of people wait for me
Sea gulls scavenge
Steal ice cream
Worries vanish
Within my dream

I left my soul there
Down by the sea
I lost control here
Living free

I left my soul there
Down by the sea
I lost control here
Living free

Fishing boats sail past the shore
No singing may-day any more
The sun is shining
The water's clear
Just you and I walk along the pier

I left my soul there
Down by the sea
I lost control here
Living free

I left my soul there
Down by the sea
I lost control here
Living free

A cool breeze flows but mind the wasp
Some get stung it's worth the cost
I'd love to stay
The city calls me home
More hassles fuss and lies on the phone

I left my soul there
Down by the sea
I lost control here
Living free

I left my soul there
Down by the sea
I lost control here
Living free

I left my soul there
Down by the sea
I lost control here
Living
Living

And I, living
By the sea

Tuesday, October 16, 2018

All Shagged Out While Feeding the Eels

Still wanting to be able to work up to a afternoon with the grandfolks I endeavoured to try more time out for a bit.  An opportunity presented itself when Mum dropped by some freshly caught snapper & kahawai, (from a celebratory work trip), two common NZ staple fish with strong distinct flavours.  Kahawai is more commonly smoked while snapper is used for the classic non battered fish & chips.  We were lucky with the portion of kahawai Mum shared with us already having been gutted & bled on the trip.  Which left the snapper to be gutted & filleted at home.

Tasty snapper, chilli lemon pesto and 'chips'
Hubby worked out a grand plan to crumb bite size pieces of kahawai with chana, (chickpea) flour, fresh sage and orange zest.  So post filleting he crumbed and fried the kahawai to eat that night, (as it normally does not keep well hence it is more often smoked).  While we could have some snapper in later days.  We kept the guts, skin etc to feed to the local longfin eels in the nearby creeks and ponds, (much like feeding the ducks except you are less likely to get bitten with eels).  Hubby prepared a lovely herb, lemon zest, ginger and chilli pesto to sit on top of the cooked snapper and we swapped chips for green long beans, (a cheaper & healthier option at the time).

View of one of the ponds, pink Chelsea factory, beach & sea from one of the estate's park areas
We waited for a good day to head out to some local ponds.  The ponds are right next to the coastline in the pink Chelsea sugar factory estate grounds.  Established in the 1880's with classic style houses (prior for some local workers but now rented privately), plenty of manicured garden & natural bush, walking tracks, beachfront and large ponds that are home to several wild species and some waterfowl & carp.  The grounds are open to the public but seeing more than 5 people in the area at a time is busy, (unless it is a shift start/end at the factory), and it is a lovely quiet park were locals can sneak off to eat lunch in peace away from crowds.  In the winding & wide estate there is always a quiet corner.  In this case there is a carpark right next to the pond so all I needed to do was stand and hold onto the car or sit on the hood, which I can maintain for a few minutes (with the trade off with energy later on).

We noticed the eel population had suffered recently from public interactions when we arrived.  I had heard people had illegally been killing them around the area, completely wiping some creeks out altogether (an action that carries a fine).  Where previously groups of large very curious eels, often decades old, (as some can live to over 100 years), would come up to greet newcomers to the ponds there were only a few small eels very scared and unsure of humans.  Probably a good attitude to have given the recent events.  We got the fish guts & tasty tibits out to feed the few there, hopefully they survive the other humans so they can get to the end of their lifetime to breed at least once before death.

We then got to feed some of the ducks including a very excitable muscovy duck which appeared to respond extremely well being called for oats.  Hubby would call to feed ducky some rye oats and when he ran out I would call to feed him some of mine.  This duck knew the deal and was attentive to our moves and which human had the food.  The other grey ducks hung back and waited for the muscovy to finish.  They probably had their fill from another earlier set of duck feeding public as we had come post the lunchtime, er rush.

See if you can spot all the visible shag nesting perches
I got to take photos of the local pied shag colony. In other countries other subspecies in the family are also known as cormorants.  The colony has around 30 pairs which gather & build a nesting colony in the trees on the other side of the pond to the factory.  They still get their sea views and often will fly out en masse, (even though in general the pied shag normally forages alone), before breaking off around the harbour to feed before coming back the the Chelsea estate to nest in the sheltered spot.  I remember it was so strange seeing them fly into the colony as a group, normally you might only see 1 or 2 out in the wharf & beaches by themselves.  They will be rather quiet compared to other birds but will often be sleeping, drying out after swimming & diving for fish and grooming.  However with a colony this large there is bound to be one or two birds calling, but less of a din than if the whole colony was battling to be heard.

They form monogamous breeding pairs and the colony will build up nests over time on the ground or in trees which they seem to share on a first come first nested basis.  I found a breeding pair which were grooming each other and sleeping together often on many days.  They stand out from the crowd a bit and you can see their back feathers are black their undersides are white, the skin in the front of the eye is yellow, the eye ring is blue and the base of the beak is a pink.  Whereas non breeding juveniles have lighter back feathers, more of a black brownish tone, they have some brown mottling on their undersides and there is more grey around their eyes than distinct colours.

Shags & cormorants have a more well known set of distinct postures.  Especially well known is the posture where shags are seen sitting on poles with their wings outspread to dry in the wind.  But there are also several distinct neck & body moves, (say pre-dive and pre-jump), and you can see the expansion of the head in one of the later photos.

All shagged out ourselves we headed back home to finish off the snapper for the night. Well worth the fishy treat. We were so lucky as it had been a couple years since we last had some at home. Hubby will remember the pesto & crumb recipe for later. Definitely a keeper.

I can't look at the rocket launch
The trophy wives of the astronauts
And I won't listen to their words
'Cause I like
Birds

I don't care for walkin' downtown
Crazy auto-car gonna mow me down
Look at all the people like cows in a herd
Well, I like
Birds

If you're small and on a search
I've got a feeder for you to perch on

I can't stand in line at the store
The mean little people are such a bore
But it's alright if you act like a turd
'Cause I like
Birds

If you're small and on a search
I've got a feeder for you to perch on

If you're small and on a search
I've got a feeder for you to perch on
I've got a feeder for you to perch on
If you're small and on a search
I've got a feeder for you to perch on
I've got a feeder for you to perch on

Wednesday, October 10, 2018

ME Group AGM, A Stumble, Followed by a Fall

Alright perhaps I did try too hard to go outside, I pushed.  I thought sitting down in a community hall for an hour would not be too bad.  It shouldn't be after all, sitting down for an hour listening to someone speak and then afterwards having some light snacks, with tea and coffee.  How mistaken I was.

The ME CFS Auckland support AGM was a shared food event so hubby has made some amazing hummus and cauliflower and thyme purée with some common allergens removed so safer to eat for those like me.  I was so appreciative and proud of his skills I really wanted to share with others.  Hubby likes to give gifts of food made with love and for an event in NZ it is considered a good form of koha, a gift to hosts, (like a gold coin donation or wine etc).  I was going to share the beauty and flavour of hubbies cooking with some safe dipping food and listen to one of the more renown doctors around the condition of ME in NZ, Dr Rosamund Vallings, speak on medical updates and answer questions.  It feels silly now.  No one in the end got to try any of the food hubby made at all and I could barely listen. Trying so hard to focus on the words.  In the end the food was packed up with me to be taken back home.  In the later days hubby and I had to chip away at it all ourselves, er with chips.  I feel like I failed a lot.  Failed in the ability to give thanks to those running the event, failed to thank those who helped me and failed to network with fellow sufferers.

Sure I was a bit woozy, when I got there but I put that down to having to dress myself on the day and the journey out to the AGM.  I thought well since I had that walking cane to help with balance, and sitting down with rest & tea would not be so bad.  But no.  It got incredibly bad fast.  Too fast.  I felt like nausea incarnate, had incredible difficulty staying upright, pain, trouble standing, far too much trouble walking.  I could not speak normally, annoyingly.  I had to make whole sentences fit into two words.  Two words that would be drawn out and slurred, half muttered.  Some lovely ladies, who had experience with the illness (either themselves previously or more commonly had patients & family who had it), aided me in standing and getting into one of their cars parked right outside.  To collapse into the chair diagonally, then horizontally.  They drove me home early.

I felt so bad as I had taken them away from the event.  That hubby had put that effort in to share food with them.  I felt so grateful for help.  That I had not expected this quick descent would be an understatement.  It took days to recover.  Vision completely blurred, hands not working right, unable to make or carry food, ice pick through the eye migraines, infections, walking issues along with a couple falls at home, digestion messed up.  It was worse even a couple days after the event, then it was at the event.  I thought it would be fine to go outside.  I want to be able to go out with my grandparents one day near the end of the month to a small art gallery.  So I thought sitting in a small hall for an hour would be ok to work up to that.

In the end it was the getting dressed & journey which took a bad symptom day and made it worse.  The effects being so far away from my hopes.  Surely sitting down and listening for an hour or having a shower should be achievable.  So embarrassing, this illness.  Because the simple ability to sit & have a cup of tea, or do a 15 sec walk is an achievement.  Much like the joke Xbox achievements.  Sat up unaided, achievement.  Went to toilet, achievement.  Ate some food & drank fluids, achievement.  Listen to meditation music, achievement.  Write a couple of paragraphs, achievement. Read a simple page, achievement.  For most people they are a joke, but for me they are dead serious achievements.  I am fighting to keep going and struggling to do everything I can to be healthy.  Sure some days are limited to just those few achievements.  But I try everyday to do more.  I know I should not be so hard on myself but when your life is limited to just a handful of things, you too would be willing to risk a few more days of pain and suffering, not being able to do those things, for just one short moment of hope. 

Spoon theory applies for many illnesses. Image by the Dysautonomia International Org

Maybe later on I will recover enough to watch the talk.  But not this day or the other days I write this post.  Because it is a trade off (commonly known as the spoon theory, except I often have 6 spoons only and a shower costs me 5 spoons).  If I choose to do one thing like a shower I end up not being able to do something else like get dressed, & get food.  In fact a shower often takes practically all my other achievements away & requires recovery days.  Hence I cannot shower often.  Did I mention this illness was embarrassing.  If I watch the AGM talk of an hour I cannot read that day or write even a little.  I have to make a trade with such small achievements it feels like I am haggling with the universe.  Listening for 40mins knowing that you will lose the ability to speak sentences, is annoying.  It is not me.  It was not me before.  But I have to accept that is my body now.  Even though I struggle against the chains of illness that bind I have to recognise they are there.  Take a step back and take everyday as it comes.  Some days with more chains, some days with less.  Keep on haggling with the universe to lift a chain when it can.

At least it was really good hummus and purée with saltly healthy quinoa & chia seed chips.  Shown above was a big hummus related meal for the day.  The hummus was made with a touch of fresh orange zest & juice for a little sweetness as well as lemon & tahini.