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

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 redish pick.  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

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

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

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 a 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.

Sunday, October 7, 2018

Phoenix in the Dark

 Image of the Phoenix rising by Kagaya
On surmounting grief initially I told myself I would not resort to tepid poetry but due to a outstandingly bad week I thought I would put this up as it made sense.  Initially I was singing this, but no, I am not going that far to say it is a good or even passable song.  It is a state of thought and emotion like the other posts here.  Nothing is bad forever, in illness and life things do not last forever.  Pity humans often cannot live to forever so our perspective is somewhat shortened to what our brains can accommodate in memory, most notably the present.  After the poem I have included where some lines pull from emotion subconsciously and sometimes consciously from other dialogues & memories for certain points.  There is also a swapped out verse as one version made me think of hubby, and another what I have to face.  They are not the same, nor would anyone else's experience be the same, but like a reflection in a pond the colours mirror those above somewhat murkily.

We all fall down
we all feel defeat
you've lost your crown
and your dreams are at your feet

You scream in rage
trapped and hurt in this cage
locked away from your friends
who all left you in the end

You've been fighting this war
weapons broken, path strewn with gore
overpowered you slip down to the floor

And you can't bear no more
what are you fighting for
who you are fighting for

In the darkness your light, your life, your power

For alone you transform
your cocoon safe from the swarm
calm will follow this storm
Leave your past where it belongs
your hopes are not all gone
they have been living all along

You carry them on your soul
embers warm in the charcoal
stoke the fire in your heart
make it burn and banish the dark

Let your wings unfurl
let your mind explode in singing
is it the end of this world
or only the beginning

Below I explain a few chosen parts that I feel comfortable that I can quickly describe a little of makes up this phoenix without travelling into depression and leaving out the deeper layers of my psyche for simplicity. 

"We all fall down
we all feel defeat
you've lost your crown
and your dreams are at your feet"
This is succumbing to events and emotions.  It can be a death, disease or something else which dashes hopes against the rocks.  But this loss is something not completely unique as human experience is full of trauma, even though the exact occurrence and person differs in every case.  Even disability through disease and events is a common experience among us.  The first line a link to a children's rhyme "Ring-a-ring o' roses",  typically associated with the Great Plague in England in 1665 with a rosy rash, herbal posies carried as a ward, coughing the final fatal symptom and then death.  However that origin is contested as the rhyme could have existed prior.
"Ring-a-ring o' roses,
A pocket full of posies,
A-tishoo! A-tishoo!
We all fall down"
In addition to children's rhymes belying the common occurrence of suffering and grief I think of the song Toy Soldiers, by Martika,  The loss of a love, or a part of your life, expressed in grief is never fully gone but is a part of our battle. Never a perfect cure, like forgetting, the experience remains a part of us. The grief to break again, and again. Like a tide you can never win a fight against it continues unceasing.
"Step by step, heart to heart, left right left
We all fall down like toy soldiers
Bit by bit, torn apart
We never win but the battle wages on for toy soldiers"

The variance in recovery & required energy profiles means each disease has a different path to recover sense of self or to reforge a new one.  All must be done by the person themselves as no one can give it to them.  For hubby I was thinking of his experiences first, his mantra and drives so I wrote about his experience on the first draft.  After he falls his energy has been sapped, He loses the ability to even sit up.  He needs to drive anger and adrenalin to charge his energy to get through sections of pain and manoeuvring.  He refers to the Marvel comic book character The Hulk raging out when angered by villains.  To be dragged, lifted, and pulled in stages, with each stage as painful as the fall itself.  Yet without his drive and pushing he cannot get back up, even assisted.  So it is by his hand, he sets his mind in motion (mentat mantra in the book Dune, by Frank Herbert). 
"For alone you must stand
take you life back by demand
the future is by your hand"

But ME is completely different in that it cannot often be powered through as the power use breaks more down causing a flare and making it worse physically (as I have experienced often).  Recovery requires pacing the energy use, drawing back, simplifying the environment, and following treatment to allow the eventual recovery.  Someone has to batten down the hatches and wait out the storm.  The cage of illness is necessary somewhat to protect and to also become the cocoon to recovery.  I reference a caterpillar building the protective cocoon in a similar fashion.  For the transformation to happen the cocoon is a vital part and the transformation to a butterfly is as significant as recovery.  It is also comparatively long when considering the caterpillar's lifespan so far.  So the reminder of the calm after the storm is to reassure me that even though I cannot see it and it can feel like it will go on far too long, there is a calm to come.  I think also of the movie Cocoon where alien life essence is drained from their cocoons for elderly retirees to become revitalised again before their final journey. Hence
"For alone you transform
your cocoon safe from the swarm
calm will follow this storm"

But I also had a third for a friend driven to create art after disability & depression.  The fuse can be to blow a path to access new areas of a mountain and find new ore.  Equally significant, the fuse set could also be a firework to explode in myriads of colour and flame, to wonder at their creative expression.
"Shed the body broken and bruised
search for your golden muse
build yourself and set the fuse"

"Let your wings unfurl
let your mind explode in singing"
In essence a reference with the break from cocoon and drying of a new butterfly's wings before the first flight along with Kahlil Gibran's poetry, On Love:
"...When love beckons to you, follow him,
Though his ways are hard and steep.
And when his wings enfold you yield to him,
Though the sword hidden among his pinions may wound you,"... "All these things shall love do unto you that you may know the secrets of your heart, and in that knowledge become a fragment of Life's heart."
That on the journey you cannot experience the fullness of love & life without knowing the pain of it.  Breaking out of the cocoon and unfolding new wings pumping blood & strength into them is equally as much a part of rebirth as the first flight.  That flight is akin to an ecstasy in effort, in a new environment after being trapped in the earlier phase by gravity to the surface.  In addition the phoenix is reborn from the flames and rises to a new life.  When I read Kahlil Gibran's On Love love's pinions to me were those of the phoenix.

"is it the end of this world
or only the beginning"
Often used in the sense of moving to a new era or the next stage of life.  The theme of death and rebirth is clear, and yet it is also hanging in question in this version.  As if the participant could go either way.  They can choose one or the other and it is still their will to continue to the next stage, to see what it has in store for them.  But in this journey I have a feeling of being an imposter; still new to it, still learning & searching for an answer.  Not yet ready to say disabled fully, but in the end I am.  I do face severe physical difficulties even though my mind finds the state hard to accept fully still.  Even a blog about my experience still feels like clothes that do not fit well.  Hence that imposter feeling reminded me of the phrase of Zero Punctuation's review of Destiny (always on grind).  
" 'This was the end'. But it was also a beginning. Was that what you were going to say destiny intro cinematic? It was, wasn't it, you f'in hack"

Thursday, September 27, 2018

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.

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)

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

Thursday, September 20, 2018

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.

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

Tuesday, September 11, 2018

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.  

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