New Heart Rate Monitor and That 'Beeping' Alert

On hubby's research he thought we needed a heart rate monitor to more accurately record around moments of tachycardia, orthostatic intolerance, intense fatigue, moments after doing basic things to see what the energy costs were.  I admit I was somewhat interested.  Not being great at pacing, I normally try to get through the necessary living tasks, e.g. make & eat food, drink ample water, bathroom and if I have a good day something on top of that, and then see where things end up.  So it would be good to have more accurate readings, a better sense when I need to take breaks and how useful breaks are.

Dragon Ball Z meme, It's over 9000

So after a couple weeks of taking readings at intervals and completing basic tasks I can officially say even simple resting daily tasks like making breakfast easily bring me over 130bpm (the maximum alert boundary where a beeping alert would sound).  The first few days I was easily able to find when it would start beeping as making toast, feeding the cat, bathing, standing in a park, going to an appointment all would make the heart rate monitor go up above 140, even above 150.  I would put it on, try to stabilize my hand for a clear reading see the pulse reading form regular bumps and the beeping alarm would be going.  I made a joke because of the meme from Dragon Ball Z where one of the antagonists, Vegeta, exclaims the power level of another character, Goku, is over 9000, and I was regularly getting over 9000 beats per hour.  But hubby is more distressed by the results.  It is a clear indication of what is occurring, sitting & resting I am often over 110 bpm.  Even standing meditating can easily bring the heart rate over 130 bpm.  But evidence of this and the orthostatic issues are not a good sign for hubby.  Hubby would exclaim "It is not like cricket, it is like golf".

I have started recording some readings when my hands are not as bad & the screen can be seen on the camera by taking a photo with my phone.  There often is a weird issue where the monitor screen would not show on camera due the light & frequency so some moments I try to capture out of sunlight.  If I did not have the photos the doctors would not believe me if I simply wrote it down or reported to them.  A photo will also show the other screen readings including the oxygen readings.  In fact the monitor will beep warning alerts so often that I am now used to the sound and it is just another part of the day. Hubby would be more used to me taking readings too if it was not for that "f'in beeping alarm".  I take note of moments that when I go above 150 bpm I should sit down for a bit to bring the heart rate down otherwise the next day is awful.  Having a hot drink helps as well, perhaps because it reduces mucus in the breathing paths & reduces the breathing chest pain a bit.  Days after I got up above 170 bpm it took a while to recover.  I was often hitting 160 bpm plus after even rest breaks or days after.  My physical ability was shot, with orthostatic issues, fevers, headaches, breathing issues, stomach & bowel issues so it was already noticeable without the heart rate monitor telling me it was taking time to recover from a period of 170+ bpm.

Lesson learned take regular readings, walk with a cane, sit down to rest often and try to avoid staying at 160+ bpm even for a few minutes.  I try to even just have a standing heart rate below 130 bpm, the mark of hubby's "infernal beeping alarm", but have not been successful in that yet, (poor hubby).  As I said I don't mind the readings, I have known the orthostatic issues are a bit of a bugger when doing basic tasks and have felt my heart rate when meditating so the readings are nothing new to me.  I take readings to provide data for the doctor but I am not fussed about them.  Sure the alarm may bother hubby but it is what it is.  After all you probably would not expect someone as calm as me to have heart rate readings like this but in the end they are a part of ME & tachycardia.  I have managed to also find some of the other alert boundaries as well (by accident when they occur).  I got a low blood oxygen reading a few times of 88 %SpO2, which set off the alarm but with further readings found the low blood oxygen alert beeping starts from 93 %SpO2 and under, (94+ %SpO2 has no alarm).  However thankfully most of the readings show a blood oxygen level above 95 %SpO2 so just as well.  I have also compared the readings against the heart rate monitor the doctors and hospitals use and they are pretty similar, (same method of measuring and pretty close to same readings except the pulse graphic can vary in the display format).

I am here living with ME, which produces worse physical condition with exercise and now have a heart rate monitor that often sounds its warning beeping alarm.  At best I have to hope my heart in the end follows my head and calms down.  I am seeing such a disconnect between them, which is curious but not uncommon for people with serious chronic illness so it is not a unique position.  The issues with exercise though often are annoying, a punishment my body enforces on me even for going walking, yoga, & cardio.  Where it brings on a flare that lasts for days, a goat to the groin, with immune, gut, neurological & further heart issues.  The following days after are a crash and long term the results are worse... which makes this far more annoying than something like depression (where exercise, even graded therapy helps).  Myself and hubby cannot medically improve our chronic diseases with exercise but we love going out and doing things none the less.  I am now medically more affected by outings but there is still a level I try to push myself even when stuck at home.  People who have a chronic illness or serious heart issues often cannot think themselves cured but some days mindfulness does help deal with the effects from the illness and light stretches & yoga help prevent muscle wasting.

Even writing this my heart rate has dropped from the 'making tea heart rate' of 130 bpm to  the lying in bed rate of 105 bpm.  A very good day indeed.  Although strangely the very few times under 95 bpm I feel like I am passing out & very faint, it does not even drop this low when I am asleep most nights, so between 100-120 bpm is probably a good baseline for light writing & cognitive function, (at the moment for me).  Many people can do light exercise, or even stand and their heart rate does not race or produce chest pains but in the end I need to play the cards I have been dealt this round.  I guess I do need to take more rest breaks instead of pushing to try to do more basic life things but in the end I have to continue on a path to recovery which involves a level of effort to keep going.  My life is like a calm pond already and any pebbles that are thrown my way just sink to the bottom with light ripples quickly returning to the pond's mirror stillness.  The pebbles pass through me and they are simply a part of the bottom floor of life.  It is good to have the record to present to medical professionals and it is a good measure that offers more medical evidence to search for a solution.  However in the end it is just more cards to the pile, more pebbles in the pond.  Get through this round and maybe the cards dealt in next round will be better.

An appropriate song for this, (in many ways)

The Gambler - Kenny Rogers, Songwriter: Don Schlitz

On a warm summer's eve

On a train bound for nowhere

I met up with the gambler

We were both too tired to sleep

So we took turns a-starin'

Out the window at the darkness

The boredom overtook us,

And he began to speak

He said, "Son, I've made a life

Out of readin' people's faces

Knowin' what the cards were

By the way they held their eyes

So if you don't mind me sayin'

I can see you're out of aces

For a taste of your whiskey

I'll give you some advice"

So I handed him my bottle

And he drank down my last swallow

Then he bummed a cigarette

And asked me for a light

And the night got deathly quiet

And his faced lost all expression

He said, "If you're gonna play the game, boy

You gotta learn to play it right

You've got to know when to hold 'em

Know when to fold 'em

Know when to walk away

And know when to run

You never count your money

When you're sittin' at the table

There'll be time enough for countin'

When the dealin's done

Every gambler knows

That the secret to survivin'

Is knowin' what to throw away

And knowin' what to keep

'Cause every hand's a winner

And every hand's a loser

And the best that you can hope for is to die

in your sleep

And when he finished speakin'

He turned back toward the window

Crushed out his cigarette

And faded off to sleep

And somewhere in the darkness

The gambler he broke even

But in his final words

I found an ace that I could keep

You've got to know when to hold 'em

Know when to fold 'em

Know when to walk away

And know when to run

You never count your money

When you're sittin' at the table

There'll be time enough for countin'

When the dealin's done

You've got to know when to hold 'em (when to hold 'em)

Know when to fold 'em (when to fold 'em)

Know when to walk away

And know when to run

You never count your money

When you're sittin' at the table

There'll be time enough for countin'

When the dealin's done

You've got to know when to hold 'em

Know when to fold 'em

Know when to walk away

And know when to run

You never count your money

When you're sittin' at the table

There'll be time enough for countin'

When the dealin's done

Spring Starting Outside the Door

First to set the scene for spring some music composed by Edvard Grieg, "Peer Gynt - Morning Mood".  I was also thinking of Vivaldi's Four Seasons but Morning Mood is softer & more in turn with a NZ soft spring light, flowers unfurling & bees bobbing between them.  While Vivaldi is quite heavy with very sharp contrasting sections, (definitely not suiting the hyperacusis from hubby's brain injury and me still a bit migrainy).

Outside our door is a native kowhai tree with beautiful yellow drop flowers, pea like seed pods and tuis, NZ native honeyeater birds, fighting over who can claim the tree.  A classic NZ scene of the tui singing in the kowhais in spring.  Tuis also enjoy other nectar trees so the red flowering pohutukawa, (often a symbol of NZ Christmas summer), and the flax with large red flowers often also have a tui come by.  They are an aggressive bird when nesting, even known for bringing down hawks & magpies for flying too close during nesting season.  Hence they can crowd out other native species when they have no serious competition.  So in many areas across NZ you will be able to hear a tui sing when you come by the trees they enjoy.  Hubby can sit and hear the tuis in the trees on the fence line and watch them shoot past on a patrol of the area & heading to the Kowhai to drink the nectar.

When there is more than one tui in the tree the rival visitor is at least given a warning to get out and 'find its own f'in tree'.  The tui who claimed the tree will puff up and 'try to make himself look big', (like the cat from Red Dwarf).  Often this will turn the tui from a sleek bird to a very angry puff ball three times the size.  If the warning is not enough an aerial fight is on.

Once the interloper leaves the successful tui reduces the puffed feathers to about half, and with a chest proudly thrust forward & his white bib held high sings his success.  After a champion sings they usually reduce the puff out of their feathers back to the sleek form and resume feeding.

Tui have two voice boxes, syrinxes, so they perform a variety of noises & songs which can vary widly from chirps & creaks to lyrical calls & high pitch trills.  In the bush they bring a ghostly atmosphere as they sound quite unlike the other birds.  The department of conservation have provided some lovely captures of their voices in the bush.  They are open to listen to and free to the public to download, (the more who experience the tui song the better for NZ tuis).  The first is of a male calling out across his territory, some of the more ghostly sounds & more commonly recognised, while the second is a collection of varied communication calls: croaks, whistles, chirps, creaks, trills, waughus (not a real word I know but an approximation) etc.

When signs of spring come by it is nice to see them by the door so when things get too wobbly & painful there is something not too far away to look at & relax.  The sound of the tuis is a million times better than suburban guys who are mowing a 4sqm patch of grass on their fence line every week.  Hubby has no trouble with the birds and that is perhaps because we enjoyed the bush & outdoors so much that we are so accustomed to them.

Due to the concussion injury the loud sounds of the neighbours and tradesmen cause hubby no end of grief & frustration.  When I have a bad migraine I can understand, where hyperacusis makes loud sounds & certain frequencies quite painful.  There are recordings of the birds, (along with other acoustic atmospheric music tracks e.g. rain, waves), which help to play on headphones to counteract the more painful sounds, along with noise reduction headphones and earplugs.  We often cannot entirely remove the source of the painful sounds or remove ourselves from them so building a tolerance, breathing exercises, sensory modulation and in the worse cases medication helps.

I say this as I had an exceptionally painful migraine lasting a couple of days recently; making me unable to stand, sit, read, blurred vision especially on one side, lots of sharp & throbbing pain along with very painful hyperacusis, even extreme nausea.  Often when I come out from a migraine there is a weird feeling almost as if you woke up after passing out in a seizure for a long time and your mind is not quite grounded & partially trapped still in a dream like haze.  The world has a light and odd atmospheric quality.  About to take flight or stumble & fall in an attempt like a baby bird.  Certainly Edvard Grieg's Morning Mood suits but hubby finds the following song Learning to Fly closer to his heart and I can understand why.  We both listened to Pink Floyd in the womb so to speak and certainly when growing up.  For him the poetry of this song is what he often feels. It captures for both of us feelings with chronic illness quite well.  Certainly for this post we were grounded inside looking at spring arriving outside, but in our minds we flew.

Learning to Fly - Pink Floyd

Into the distance a ribbon of black

Stretched to the point of no turning back

A flight of fancy on a windswept field

Standing alone my senses reeled

A fatal attraction is holding me fast how

How can I escape this irresistible grasp?

Can't keep my eyes from the circling skies

Tongue tied and twisted just an earth bound misfit, I

Ice is forming on the tips of my wings

Unheeded warnings I thought I thought of everything

No navigator to find my way home

Unladened, empty and turned to stone

A soul in tension that's learning to fly

Condition grounded but determined to try

Can't keep my eyes from the circling skies

Tongue-tied and twisted just an earth-bound misfit, I

Above the planet on a wing and a prayer,

My grubby halo, a vapor trail in the empty air,

Across the clouds I see my shadow fly

Out of the corner of my watering eye

A dream unthreatened by the morning light

Could blow this soul right through the roof of the night

There's no sensation to compare with this

Suspended animation, a state of bliss

Can't keep my mind from the circling skies

Tongue-tied and twisted just an earth-bound misfit, I

Birthday Spiced Roast Duck, Food Art and the Mind

Past years cooking of the Christmas paella before adding the prawns and chorizo on top

At the moment the brain injury hubby is recovering from has sapped his energy and creative flair.  He loves the creative outlet of cooking and sharing food with loved ones, (his way of giving gifts and koha).  I enjoy helping and do not want to impose on & reduce his creative artistic food directions.  For him it is relaxing and fun to delve into and his past creations have been amazing.  We had a tradition of making a proper paella for Christmas.  In better times I brought hubby a sausage making machine & kitchen mixing machine, named Gerty, which he made amazing creations with.  We had homemade tapenades, chutneys, harrissas, curries, roasts, pate, breads, home made sausages (his first set was chicken, chilli & bacon, and a beef, rosemary & shitake).  Although at the moment there are not many energy points available to do it so even simple food can still be very difficult.  Now the prospect of cooking a meal is now a long process that needs to be broken down to short stages.

The brain injury happened from a set of incredibly bad falls, a massive knock with concrete and the mind changed as if a switch had been thrown.  Near the beginning he would not remember minutes, hours, days, weeks, months, things were blurred with mental, visual and auditory issues.  There was a lot of frustration.  Very slowly his memory has been getting better, his ability to read has come back, some tasks can be completed, the dyslexia dropping, but the fatigue, the complexity and memory of tasks has still been off kilter.  Almost as if you can remember now what you want to do, but forget how to do it or at what stage you are at.  Slowly building the mind back to previous levels has been a journey we are still travelling on.  After a year of recovery there has been significant changes.

We knew the symptoms of traumatic brain injury but the severity surprised us a bit.  He would often have several bad concussions a year but after a couple to a few days would be better.  But this one was bad, for many months I would be a backup memory and helped out a lot with the planning, bills, shopping, transport (as I am the only driver between us), even the cooking when it became too much for him.  I would not like to take away his chance to cook, take away his agency at a thing he feels relaxed at and enjoys, but often it would become mentality tiring & too complex even then.  We understand that having agency is important when you are disabled.  We often leap into what we can still do that much more and value it highly.

Image by Vetalitycorp

Some effects of brain injury we found strange.  He went from a night owl to a morning lark.  For a man of multiple languages with such detail & memory his gaining dyslexia & slurring speech was very frustrating for him.  I have dyslexia but living with it for most my life I have built up the ability to recognise some of mistakes and add in some self correction.  I can appreciate the confusion that comes with it.  After all in your mind you have said or done something, but out loud something else came out of your mouth or hands and you did not hear it being said or read it as it is written.  Likewise when cooking he would think he had done something but in the end would have forgotten and when asked could not remember either way.  Hence when preparing to cook with recipes, cooking times, multiple things to focus on and completing tasks it is still a challenge.  So we would break down to simple things, simple flavours at first.  Then later on move to just adding a couple of steps and tools on top after a couple of months.  It was beans for breakfast for many meals.

It was my Mums birthday recently, she knows how much hubby loves to cook & be creative with food experimentation so she brought a duck for us to roast for her.  He has been practising cooking a few times for dinners but we thought a roast lunch would suit both of our fatigue levels more.  Hubby broke the process down to 3 days of tasks we could both do.  I would be in charge of additional ingredient sourcing, purchasing, getting the veges ready.  We went with orange for the duck, NZ yams otherwise known as oca (on good discount $2 for 500g), earth gems (super small sort of potatoes called ulluco native to the Andes, South America), courgettes/zucchinis, mixed colour purple and white cauliflower for a puree (from a small fruit & vege market also extremely discounted), and thyme from the garden.  I have to admit it took me a couple of weeks to gather ingredients.

NZ Yams otherwise known as oca (not the sweet potatoes called yams in America)

Ulluco or in NZ branded Earth Gems. Photo by Catherine, An Angel in the Kitchen

We would go to Mum's kitchen to do the prep work and cooking, making it easier to pack down after each stage and so we could do the roast in an oven.  For hubby the first day is preparing the brine mix of orange rind and salt, while defrosting the duck.  The next day will be to put the duck in a watery brine mix in a sealy bag, then leave in the fridge overnight.  Afterwards he would prepare the spice rub mix with sumac, smoked paprika, nutmeg, clove, cinnamon, mace, salt and pepper, and a glaze of pomegranate molasses, orange juice, orange rind, brown sugar and a bit of the spice rub.  On the last day it was time to roast.  The yams and earth gems go in a roasting pan, hubby would put the duck on top.  A tricky bit was to lift the skin of the duck breast to rub the spice mix on the meat underneath then rub more spice mix around the outside.  Add a topping of sliced orange.  Into the oven it goes.

Then I would cook the cauliflower and strangely the mix of purple and white cauliflower would make a blueish puree with fresh thyme mixed in.  The courgettes would get fried with olive oil and balsamic vinegar.  Hubby would come back at regular intervals to check the duck, I would lift it out of the oven for him and he could pour the glaze over the duck.  Back into the oven it goes again.  We prepared some non alcoholic drinks like red bush ice tea, lime juice and soda, and mum brought some wine to share but which in the end she drank herself (we had to abstain and stick to mostly all the drinks we prepared due to the reactions from alcohol).  The plates were out, the table set, some rice crackers and condiments were shared and the roast duck was finally ready.

It was delicious, the orange and spiced flavour was amazing, along with the sweet roasties, sweet fried courgettes and a very nice umami cauliflower puree.  The duck was lovely and meaty.  It was amazing to have after not having meat for so long.  We saved all the bones and scraps for later days of cooking, (a duck bone stock perhaps and orange & spiced duck fat for later roast veges), and with what we roasted there were at least some roasties leftovers too.  It was nice sitting down to lunch with Mum.

 Seeing a friend's band play years ago

Mum wanted to know if I could go out to gigs still.  After dinner I was struggling to stand and holding onto the bench for help while taking the dishes across.  I wanted to objectively think about it.  I was not sure.  I would love to go out.  I would push myself through any pain and given any results just to spend time with family.  But I was struck with a pause that I should be honest with myself, had I really been able to make through an event in the past years?  Could I go to a gig again soon and not end up in pain and passing out from orthostatic issues after little more than an hour or more...  I cannot even make it through a movie at a cinema without fighting issues and lack of consciousness.

At a gig due to the environment personal safety is slightly more at risk and nights out are very expensive, (assaults can be common in certain crowds and there can be nowhere to sit, lie down or have a breathier, not to mention transport at night is an effort and super expensive when not driving).  To be positive I mentioned to mum I did not mind not going out much, even though I would love to go out with friends and family.  I did not mention that it can be isolating being both financially and physically separated away from the people you care about and unable to see them but desperately wanting to.  At this point in time hubbies energy gave out, and so it was time for him to relax his mind and body as part of his recovery.  It was a moment where we both were having difficulty standing.  I would get very faint, have difficulty breathing and my vision would go black, I would slump into a thankfully very solid object, and do breathing exercises resting a bit before continuing.  After cuddles we went back to our flat, and crashed hard.

Two planes flying in sync with each other in Wanaka (a holiday of past years)

It is funny how much ME is like a severe brain injury and for a long time I was hoping to mirror hubbies recovery.  But what is painfully clear is that now he is outstripping me in regaining his skills and the skills we shared.  I am still struggling to do even a simple meal & shopping trip once every fortnight.  Engineering work is an immense gulf away still in the labyrinth that is recovery.  Hubby needs me to drive multiple trips in a week and unfortunately my body is not playing ball.  I will push myself as much as I can, regardless of what may come after.  I try to build back up using similar practices that many with neurological issues face, (even ones hubby himself used for severe brain injury).  I still hope one day I can go back to where I was, to return.  But life is to always move forward and never be trapped in regret.

Yes I often lose ground and the sand castle I am working on will be taken back into the encroaching tide.  We want to have lots of meals with family and friends again.  Even if they are buying the meat.  So no matter if the waves wash away my sand castle I take it in my stride and build up a new one the next day (or a day when I can).  The waves and tide are very much like the issues you face with a chronic illness.  I have to let things go like sand being pulled back into the sea.  You cannot hold it, it is a temporary and changing environment you cannot fix in place.  Some sand castles are better and closer to being finished on certain days and others you may struggle to hold a clump of sand in hands too clumsy & painful to build while a storm whips around you.  While hubby is frustrated with his slow recovery I make sure to let him know that he is noticeably getting better and I am there to help & be with him along the way (even if he is angry due to frustration).  The brain injury was like a switch to night that has the sun coming back around and the dawn coming up.  It is something I cannot say for myself so I tend to over apologize when the storm is raging for things I should be able to do.

View of Mt Rangitoto in Auckland taken from beach

We are on the beach together waiting for the sun to break over the horizon.  It is close now I can see the glow and I hope I have finished a sandcastle too when it does.  

Simplify - Young the Giant

Everything I say only seems to complicate it

Every little fight is just another night wasted

Are we gonna lose? Is it gonna last?

Worry about the future, worry about the past

Think we're gonna break before I get a chance to say this

Don't wanna live without you

Staring in your eyes, everything simplifies

Leave it all behind, everything simplifies

All we need is nothing more when everything simplifies

You and I need nothing more, everything simplifies

Stressing over this, stressing over that, we're falling

Like the whole world is banging on the door I'm calling

Are we gonna lose? Is it gonna last?

Worry about the future, worry about the past

Filter out the noise, focus on my voice and fall in

Staring in your eyes, everything simplifies

Leave it all behind, everything simplifies

All we need is nothing more when everything simplifies

You and I need nothing more, everything simplifies

Why must we complicate

Every breath we take?

Why can't you see we'll be alright?

Nothing disappears

Even the pain we've been through

But all I need is here

Don't wanna live without you

All we need is nothing more when everything simplifies

You and I need nothing more, everything simplifies

The Art of Wombles, Thrift and Frugality: Food Focus

 Underground, Overground, Wombling Free, The Wombles of Wimbledon Common are we.
  Making good use of the things that we find, Things that the everyday folks leave behind.
Photo by Mags_cat

It has been a bad couple of weeks with trouble even preparing a meal a day.  I have more burns & cuts on my hands which are a bugger to keep clean and many dropped items have been lost.  But in comparison that is a small issue.  I would like to begin a part on how we manage through loss of income and financial budgeting, as even now we are still hoping to find a home that we can bring a wheelchair inside, and even has a bathroom that allows regular bathing.  Even a place that did not flood regularly, (sometimes with sewage), would be a plus.  So the essential part of managing a recent significant disability is juggling finances.  Key to that is unavoidable short, medium and long term planning.  Which in turn needs to be broken down to what you need to do to get by week on week.

I remember when I was around 10 in a childhood girl guide brownies night the leader wanted to demonstrate emergency evacuation, and refugee survival needs.  She asked the following of our group "If you could only take 5 things from your home with you when being evacuated what would they be?".  The leader expected most the kids to focus on their toys, clothes and items of materialism.  I was one of the very few more focused on survival.  First I made sure I would take with me my pet cats, companions who had been with me since I was born.  With baby photos cuddling them and living with them as deep friends; in no way would they ever be abandoned or considered less than members of the family.  Then I thought of what I would need to feed them and myself, the basics, large bottled water, pull tab canned fish, pellets.  As a kid I would not be as adverse to also eating the cat pellets in an emergency, although I would be able to fast and go without food just so cat food was more available for the kitties for as long into the future as possible.  Humans & adults can understand rationing far more than children & many animals.  I read Hatchet as a kid and also a lot about WWII so the concept was not alien.

However I was very naive and at that time did not consider other humans to be a danger needing protection from, something the leader left out completely in her story which is a large factor for anyone in that position.  For when resources are limited it is more likely to drive humans to steal and attack others, often those in the same or worse position to themselves.  Less able to fight back. In the second part of the exercise the leader singled me out.  Took my scraps of paper which I had written my 5 things and said they had all been lost and destroyed.  I was very uncaring about the food and water being lost, alternatives can be scrounged up somewhere but as a child could not bare losing my cat friends.  I tried bargaining and arguing but the leader would not let me have them back.

We may feel tied to material goods, needs, certain items for base survival, but the grief from the loss of friends and family has a significant emotional loss that can never be replaced.  If you were considering the base elements for survival, your family comes first and the necessities to keep the family alive and healthy.  Food, water and medication.  I do not handle grief well and as much as I like to think I can do without many material items, the cost of functional replacement can be significant. So the loss is annoying and replacement financially unachievable.  Being robbed multiple times is a hard set back to come back from.  Insurance, low debt, a good credit score for loans, secondhand and wombling inorganic items people throw away can be far more important once you lose everything a few times and need to build back up on just the functional level.  More personal items may be lost forever though; like the memory of a loved one, I lost the token of their memory and felt I had lost some part of them as well.  I wish I had those photos back or the items which would spark those memories I thought I had lost...

As with the above story I am going to start from the point of the necessities to live.  Being disabled you often have to make hard choices on even those.  Without enough money for food, water, electricity, a roof for over your head and a bathroom to use which of the above can you choose to ensure you survive to the next week?  Which can you reduce down to the bare minimum to be able to keep things ticking along?  Which do you have the most control and the most influence over?

As water and power may have a flat rate network charge in NZ you are limited on how much you can save without an increased outlay on materials for full service replacement (going off the grid and water capture with treatment & filtering).  Using power or water even once a month you will still have to pay line and network charges in NZ for the availability to be there.  Unfortunately public water fountains and night time heated public indoor spaces are unfashionable these days, far more investment goes into removing safe places and public services in favour of commercial budgets, so many have been ripped out or left unmaintained for decades.  Public wifi or phone booths are unheard of in most areas in NZ.  Even a physical bank branch may be going the way of the dodo due to expectations for everyone to have cellphones and large data plans.  In one of the coldest cities, Dunedin, (although thankfully warmer than many northern hemisphere countries still), there is a well known tradition of couch burning, aka burning old broken furniture to keep warm when the water pipes have frozen and there are icicles inside.  Often the burning will happen with a communal group party & bonfire so resources and warmth can be shared between households.  Preparing wood for the next winter months ahead is vital, even when there are no nearby forests, and the business of dry wood collection is popular.

QV's measure of average dwelling values. Chart by CoreLogic with labels by Lynn Grieveson.

Housing is and will often always be the largest financial outlay and often the one you may have the least control over.  The bare minimum might be a bus shelter but when you are disabled you often cannot access options like that (as standing from the ground or public seating usually requires nursing assistance & a hoist), even caravanning or tenting is out of reach without physical assistance & monetary outlay.  Garage and couch surfing are closer to accessible options.  In a booming real estate market where a state home built in the 50s for families to rent to own up to $5k, or one built and sold for $50k in the 80s now costs over 1 and a half million in mortgage debt, (an increase of over 30 times not mirrored in wage growth).  So garage and couch surfing are quite heavily booked out. At least work sites have a toilet, soap & kitchenette.  So let's begin with one option people generally have the most control over, need the most to survive and can more easily swing finances around.  Food and cooking.

So much food grown is thrown out before it even makes it to a plate.  Hundreds of millions of dollars of food a year in NZ alone.  Before it even gets to the store shelves it is critically compared against an artificial ideal of plant beauty and those that do not make the grade do not progress, (something humans even do to other humans with the ideals being more and more unachievable with genetic diversity).  At this point the ugly ones may make it to a secondary processor such as making stocks, or soups, made into animal feed or compost but often equally these batches will and can just end up in landfill.  For those with a passing grade they have a limited time on store shelves, as many stores do not wish to go beyond a fixed time on the shelf, or even a fixed discount to the price so the minimum margin is not lost.  Beyond this time and when faced needing to discount the stock further a store will often just throw out the batch into the trash.  Much of it is still edible, much of it has no quality issues.  But applying further discount to move the stock or storing it may cost more than they are willing to get back in the margin.  Cheaper to trash it then store.

This also occurs often even with the food that has been purchased and taken to people's homes.  That brocolli may have cost $4 but once it gets a couple of spots of discolouration many people will just toss it rather than cut around the spots or vary the meal preparation.  Once cooked even any excess often gets thrown out.  Some restaurants can even keep a separate trash for unused food but often it is still trashed.  Prepared, cooked and seasoned but if no one buys it at $30 a plate even staff may be unable to access it.  Unfortunately we could probably eliminate world hunger, or even just local starvation in our corner of the world if we had the logistics sorted.  But for many the ease of trashing food beats depositing it with food dispensaries.

Many a time starving mothers at a food bank wait with desperation, being unable to buy enough food for their families.  The food banks often cannot even get enough fresh fruit and vegetables to go around so those with nowhere else to turn to lose out.  Many resort to dumpster diving.  There is such a demand for this in a low wage economy where food has become unaffordable that many supermarkets around my area have put large locks & security on their rubbish bins so that the stock, (that still would be ok to sell, absolutely brilliant to donate), is kept out of reach of the poor.  They need to protect their margins.  Yet food banks would gladly accept even fruit, vegetables and bread too far gone to sell.  Many struggling families have learnt to make do with anything they can find.  Often this is also built into our cultural cuisines; the ability to use food and plants slightly past it to be made into something new and delicious.  Banana bread, stocks, preserves, pickles, jams and chutneys certainly don't taste rotten or unfit to eat but the original fruit and vege often would have been considered too far gone or ugly to allow any person to have without paying closer to full price.

A FODMAP & Gluten Free Diet is Popular for Those With IBS or IBD

Even bone broths & offal are now expensive.  The reject parts of meat that used to be more affordable are sold at rates too expensive to buy.  Having meat, fruit and vegetables itself may be a luxury and for someone anaemic with iron & vitamin deficiency forgoing these things can be severely medically detrimental.  In no way will soy, rice & wheat cover for the loss of necessary amino acids & minerals.  The first thing to address is the base level amounts of these items you need medically.  For that a dietitian can provide advice and for many with ME & auto immune issues there are recommended diets to help with IBS, food allergies, intolerances, medical imbalances and often also correct salt & iodine levels.  It is more than aiming for a normal BMI, it is ensuring the balance of minerals, vitamins, fats and proteins are consumed in nutritionally available forms.  You often cannot supplement your way out of not being able to afford food; supplements being even less affordable and often not absorbed in the same degree by the body.  

For hubby he has a low salt, (and low sugar) diet but for me I have been instructed by medical professionals to go wild with the salt intake.  My blood pressure prior was well below normal to the point many doctors would think there was a fault with the equipment then question if I was like this normally.  My diet is an amended celiac's paleo allergen restricted one (no gluten, no lactose, no processed food, several families of fruit and vegetables excluded due to allergies etc).  Eating out is incredibly difficult as most restaurants, cafes and stores have nothing I can eat, to the point I am even unable to eat the salads due to allergens contained in the core ingredients.  I also miss figs & garlic.  I really miss them, not the anaphylaxis I now get when I eat them but it is tough when the smell of toast, a good pasta, or grandma's apple & rubarb pie sends you into a land of sensory nostalgia that you cannot partake of.  You also cannot partake in shared meals, nights out or even pot lucks. BYO is not accepted in restaurants & cafes and everyone tends to expect you to eat the food they brought regardless of whether you can, (so they are put off when you don't).  More's the pity.  But once you get around the exclusionary bit of a fixed diet, then actually sticking to it is easier and finding the minimums you need medically is rather straightforward.  Cooking however being another skill that hubby is far better at though so I am sticking to the stew/soup curry type cuisine, a 'stoup' with enough decongestants, minerals, vegetables, protein and fibre.  Using an amended mirepoix & soffrito as a base for every meal, (unfortunately onions were also an allergen to avoid so they are replaced).

Given the largest costs may be the necessary base vegetables, proteins, fats & meats, work on how much you need for a week including if you can stretch out and save them.  Then look for extremely cheap and discounted sources for them.  Often gardening & home growing may be good for an occasional source but does not provide enough to live off long term and can be wiped out by bad weather.  A few bad storms killed an entire couple seasons worth of food this year so finding a exterior source not affected by poor weather, insects, was vital.  Even supermarket stocks were down & out.  For instance there was a lack of local potatoes, & lettuce to the point even burger joints put up notices apologising for the reduction & lack thereof.  It is not a good season when not just you lose all the stock you grow but when the professional large scale local growers cannot supply the supermarkets enough.  Then there are serious concerns for fruit and vegetable supplies long term, especially for a rapidly growing population & export market.  Luckily pickling, preserving and freezing is such a big part of our cultural cuisine.  A good season one year can be saved and held back for winter or even to the next few years.  Something that can be done so that not only does the diet vary in seasonal vegetables but the bad years are amortised by extra stock from the good ones.

Seconds and waste stock are normally good ways to get excess amount of perfectly edible fruit and vegetables that are much cheaper to source than otherwise.  With luck some stores may donate their seconds and waste stock to food dispensaries... but unfortunately that is not really commonly done as stores are far more likely to only slightly discount what they would more often throw out as waste.  It takes a lot of searching.  Some weeks we only had $5 for food a week, the equivalent to cover that small vegetable and maybe a loaf of bread for hubby so while it may take effort looking for food it is certainly worth the search and may be your only option to source it.  Canned beans, cheap canned fish, eggs, bones, offal (like hearts & livers), tahini, & nuts, may be the better & cheaper options for protein.

Mmm cooked livers & hearts make a good source of vitamins & minerals.

Having a freezer is great for mass meat storage where nightly portions can be separated from a discount bulk buy and then ready for the off months when cheap meat is not in season.  Bones can be saved up so a bone soup can be made later on.  Mince meat is an expensive luxury which we may be able to afford a night every couple months, (we buy a kg which can be split into 4-5 nights so it could last half a year to a year).  Likewise fresh fish which is even more expensive than mince meat can be separated into batches and then frozen.  Something you might not expect from an economically agricultural based island in the centre of a massive fishing area but most that is caught & produced goes to export with very little held back for the locals to eat.

Hence when you have a disability and your income is in question it is a real luxury to eat lean meat or fresh fish at all, and people often throw most of it away even when it is perfectly edible.  A literal crying shame and has many questioning the economic benefits of shipping most the stock away for export and the low wage staff not even being able to afford meat and vegetables at home.  Certainly a select few can afford the houses but it is not the predominant number of families in this country any more.  At best they may be able to afford some of the food they need but now most families need additional supplementary benefits to pay for the basics of food and rental housing.  It is tough times and the disabled & elderly with reduced job opportunities will be the most affected.

Hence it is good we enjoy cooking and reading classic recipes because just to survive we may be resorting to much of the cooking practices of medieval times with pottages & stews to get through much of the year.  Where nothing is too old or too far gone to be put into the week long cooking of stoup.  Sorry bit maudlin there, but as I said it was a bad year for the major growers with storms taking out much of the produce.  We can expect increased storms and with a disability little to no ability to maintain a home garden, (even an indoor garden or herb garden may be physically out of our reach).  Some companies use rosemary & parsley as hedging so when we go to those companies I make sure to help prune the overgrown edges off a wee bit for them so their gardener does not have to.  Sometimes you have to resort to dumpster diving, extensive food preparation months ahead, & wombling.