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.

The Sea - Morcheeba

Flocking to the sea

Crowds of people wait for me

Sea gulls scavenge

Steal ice cream

Worries vanish

Within my dream

I left my soul there

Down by the sea

I lost control here

Living free

I left my soul there

Down by the sea

I lost control here

Living free

Fishing boats sail past the shore

No singing may-day any more

The sun is shining

The water's clear

Just you and I walk along the pier

I left my soul there

Down by the sea

I lost control here

Living free

I left my soul there

Down by the sea

I lost control here

Living free

A cool breeze flows but mind the wasp

Some get stung it's worth the cost

I'd love to stay

The city calls me home

More hassles fuss and lies on the phone

I left my soul there

Down by the sea

I lost control here

Living free

I left my soul there

Down by the sea

I lost control here

Living free

I left my soul there

Down by the sea

I lost control here

Living

Living

And I, living

By the sea

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"

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

Working Through the Pain

 "Life is pain, highness. Anyone who tells you differently is selling something." - William Goldman,

The Princess Bride

Long post today and I promise the next one will be fun, short & more joyful.  But for those to find things TLDR, (too long didn't read meme), a key take away is the phrase:  Life is pain and anyone who says differently is lying or trying to sell you something.  Also:  Do not assume you can trust anyone simply because they are in a professional field.  All professionals operate on a scale, much like pain. 

If you couldn't guess by now the Princess Bride was one of my favourite movies.  Much like the Princess Bride I find chronic illness has large amounts of physical pain that can be debilitating and emotional pain as you grieve for what you have lost.  What a cheerful children's movie it was, a comedy with lots of pain and grief experienced by the characters, showing how they survived & pulled through it.  Having both can torment the mind so it needs to be a process of constantly adapting to the next level, like a fish travelling deeper into the water experiencing a higher pressure.  Often at the depths we are at now burns & cuts barely register.  If I hold my hand against metal heated to 180 degrees and I could tell you it would be more annoying than register as really painful, because waiting for burnt skin to heal is a hassle, especially on your hands, whereas the feeling itself is now what I class as mild.

 Deep Sea Anglerfish Predation, by Matt Danko. Where deeper levels of pain do not look pretty.

Yes I have burnt my hands a lot like that. During periods where ME makes hand control really difficult & basic cooking can turn into the most challenging marathon with broken glass strewn along the path representing the number of times I end up accidentally dropping things, cutting myself, burning myself and just taking a really long time to make breakfast, (1 and a half hours of constant mental will to reach the end of making a basic meal, even as simple as toast, regardless of injuries).  Hence during really bad days I often have to forgo eating until recovery to a better level.  Pain can cloud your focus, it can swallow up your energy.  In many ways the experience of pain itself can be worse than the source & feeling of pain.  The mind itself wants to pull away and torments itself by not being able to.  Pain is used as an alert to a state of physical danger or a warning of illness and exertion but it should never be allowed to take control.

It is by will alone I set my mind in motion. - Frank Herbert, Mentat Mantra in Dune

There is a test in Dune in which the lead, Paul, is asked to place his hand inside a box, he is told if he takes it out of the box before the test is over he will be killed.  The test of the Gom Jabbar is a test of will-power and discipline.  Even with one's life at stake, it takes strong self-control to deliberately endure agonizing pain.  The pain caused by his hand being inside the box is a burning white hot heat, searing.  He does not pull away by reflex like many animals would by instinct nor seek to trick his mind to delude himself that pain is something he should control.  It is there, it must be endured, but it is not going to consume the drive & willpower. "I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain."

The feeling of the Gom Jabbar Test of Humanity

Having chronic pain from disease or through genetics is a symptom but it is there to be lived with.  Only when it becomes a warning for something more medically serious do we identify it as needing urgent attention.  Similar to grades of allergic reactions, most will be manageable due to known conditions and can sometimes be aided by prescription medication.  Day to day symptom levels can be added to doctor's notes at regular appointments to mark the current status & development (i.e. degeneration of muscles through FSHD, or the effects of severe headaches, joint pain, IBS, allergies, and infections of ME).  But when it gets to the point of anaphylactic shock seeking medical help should be done immediately.

There are a variety of different pain medication types for different medical issues. Often they come with side effects which can be worse than the pain and often they may not do much to reduce pain.

Unfortunately I cannot take most pain medication safely, and that is common in my family strangely enough.  Opioids give me severe nausea to the point every part of the flesh feels like retching itself away from my bones (as in violently throwing it up, not just wrenching away although they do sound similar).   Non-steroidal anti-inflammatories, NSAIDs, do nothing for the original pain, add much more pain to the gut (like acid in all the wrong places), and knock me out like the most effective sleeping meds.  Bad if you need to be conscious and not as useful as it would be the worse sleep due to increasing pain, and waking up in pain frequently.  Tricyclics don't do anything much at all, but at least there are no huge side effects like the others.  They are only useful to me in so far that they can reduce anxiety a little bit, much less than owning a cat so not worth the cost.  Triptans also do nothing for the pain but come with even more negative side effects.  Seriously I can have more serious and severe reactions to pain medication than the original pain itself so I am left with few options.  I need to handle the pain and work through most of it.  Even the most effective pain meds with the least negative side effects I use only when severe pain is hampering conscious thought and the effect of them is like a feather being lifted off.  Not a lot of help at all.  Perhaps only enough to blunt the knife like stabbing, but I know those meds when used infrequently will not affect me long term.

Grading your pain can be subjective so it is good to identify with a doctor where you are on a standard scale... Even then they can still have bias towards your answers

Also doctors are increasingly adverse to prescribing pain medication or listening to pain scores from women & certain social groups.  They may discriminate against your statement of pain, (usually framed in the scale of 1-10), if you take any pain medication for it, or often even if you don't.  They will be less likely to provide pain medication, or any treatment to me when it is so incapacitating that I am on the floor and unable to breathe adequately, (screaming silently in pain due to not getting enough air).  However for my husband they will shower him with opioids & strong pain medication for something he can quite easily ignore to the point we are the ones suggesting a limit to the scripts not the doctors.

This implicit bias affects many people.  They probably though don't have the luxury of seeing the difference in medical attitude right there in the same appointment next to them.  My husband and I often have our medical appointments together to act as each others advocate so we can visibly see the difference right there in the same session as the doctor turns from one to the other.  One doctor even ignored everything I said for a year & did not bother to take notes for me while I was so sick I would be barely able to work & needed my husbands help to walk but would diligently record & make referrals for my husband for minor twinges that we thought we should note as part of regular status updates.  We are more used to seeing bias though, for years my husband was told his muscular dystrophy was in his head or he was on drugs, all while his muscles were deteriorating to the point he could no longer run.  It took another set of doctor changes to find one that even listened to him & send off for genetic tests which confirmed his FSHD.

The difference can be striking, depressing, cause cognitive dissonance as you trust the medical professional to be professional & without significant bias.  Unfortunately for many they cannot do much about the doctors reaction.  You cannot completely remove someone else's bias and often cannot afford second opinions.  Even a doctor change can be fruitless.  We have run a gamut through over 10 so far in the past few years.  Some have lead to deadly situations where internal organ bleeding, overdose & death is on the line (we switched doctors due to distrust in someone not checking for counter indications or dosage), some have even just been apathetic about their work.

When doctors rely on certain methods for patients with severe chronic pain. Picture by axelpfaender

For me the complication of my medication complications just adds to the fact that when I do desperately need help, and do finally find a medical professional who understands pain management, and they do decide to prescribe something they likely will just be inclined to the pain medications I cannot take.  Upon which on finding opioids & NSAIDs are not advisable for me they will just be struck dumbfounded as if they have lost the keys to the car and are struggling to search through foggy memory.  Many doctors have used opioids and NSAIDs as a catch all cure for pain.  When in many cases treating the cause of severe pain & helping manage through the effects needs more than a regular medical script and hundreds of dollars wasted in medical bills for off the counter medication.

Getting a medical advocate even to help with communication & taking notes when you are seriously ill in medical appointments can be a big support.

In essence the best step in regards to medical aid for pain we can do is to learn as much about the likely triggers, warning signs, levels, building & understanding our tolerance, potential medication (which includes reading the data sheets, chemical & medical research), etc.  Also it is immensely helpful to have an advocate who we trust completely available to help in appointments where it will be difficult to communicate with a doctor.  We take notes during appointments to remember key terms to say to a doctor.  To frame things in the manner they are more familiar with.

Especially check on anything doctors & specialists suggest for prescriptions and double check the dosage is right for us.  We have lost friends to prescribed medication, almost lost ourselves, so now we do not implicitly trust prescriptions simply because of the guise they wear.  Do not assume a pill will stop the pain but equally learn to recognise when things get serious to ask for help.  Where any relief or treatment can mean the difference between writhing in pain on the floor with difficulty in breathing to being able to sit up with some functionality and mental acuity.  Sometimes pain medication can help but equally much of it will have side effects and counteractions with other medication.  My husband and I try to accommodate more pain to build up a tolerance without medication to save it for when it is really needed and we cannot work through it.   

Comfortably Numb - Pink Floyd

Hello,
Is there anybody in there?
Just nod if you can hear me.
Is there anyone at home?

Come on now
I hear you're feeling down
Well, I can ease your pain
And get you on your feet again

Relax
I'll need some information first
Just the basic facts
Can you show me where it hurts?

There is no pain, you are receding
A distant ship smoke on the horizon
You are only coming through in waves
Your lips move but I can't hear what you're saying
When I was a child I had a fever
My hands felt just like two balloons
Now I've got that feeling once again
I can't explain, you would not understand
This is not how I am
I have become comfortably numb

I have become comfortably numb

O.K.
Just a little pin prick
There'll be no more aaaaaaaah!
But you may feel a little sick

Can you stand up?
I do believe it's working, good
That'll keep you going through the show
Come on, it's time to go.

There is no pain you are receding
A distant ship smoke on the horizon
You are only coming through in waves
Your lips move but I can't hear what you're saying
When I was a child
I caught a fleeting glimpse
Out of the corner of my eye
I turned to look but it was gone
I cannot put my finger on it now
The child is grown
The dream is gone
I have become comfortably numb.

 

The Man Who Sleeps With Both Eyes Open

Sleeping with eyes open sounds weird but for us it is old hat and a real bugger.

Have you ever been shocked awake out of sleep with someone panicked and worried if you are ok?  Or how a good nights sleep feels less refreshing & leaves your eyes dry and scratchy making you more irritable?  What often happens with FSHD is that for many people they cannot close their eyes while sleeping.  Not entirely unusual, there are many medical conditions that have this.  Even with almost wide open eyes.  Often my husband will fall asleep like this where the only detectable sign he is asleep is a snore or unresponsiveness.  Well that and the tablet he may be holding to read or watch slips out of his hands without notice.  While sleep meds can help someone go to sleep, or stay asleep, they do not ensure that sleep may be entirely refreshing or in terms of the eyes beneficial.

Some mornings even the daylight hurts and you can be forgiven for being annoyed at the pain.
 

Hence the name Mr & Mrs Grumpy.  Not just grumpy but Mr/Mrs Grumpy.  It can be really terrible when sleeping difficulties, breathing difficulties and pain team up on you, often when you desperately need to rest.  For anyone they will be irascible when undergoing those conditions long term and when living with people they will, even unintentionally, direct that irritation in response to the people around them.  Patience is a big key, along with recognition.  However the recognition and patience must be a two way street.  As my partner and I share sleep, breathing and pain issues we end up both experiencing a bad morning often.  Sure we have occasional morning arguments like every couple has about who didn't flush the toilet, or put out the trash, or responded to a question with a slightly more inflected tone.  We can end up having arguments by bouncing off each others mood and unintentionally upping the ante, even without meaning or wanting to.  But by now the arguments become fewer & just the grumpy tone is left on many bad days.  We have gotten better with dealing with some pitfalls.  Yet even on bad days any contact can be painful and leave you wanting unconsciousness, just to get away from some of the pain, (even just to pause it for a short time). 

In the movie Pi the lead suffered terrible migraines, I think they captured the feeling quite well.

So as another key to patience the next big thing is the word 'sorry'.  Great sometimes even used at the beginning of a reply to preempt when we know we are having a bad morning.  I know what I say will sound grumpy like I am possessed by the stereotypical grumpy old men who found the footpath outside their house filled with teenagers... on skateboards.  Especially good if we are really dazed to start the day with FSHD or ME symptoms and in a lot of pain so our response may be more croaked out instead of spoken.  Sorry, please sound down, loud.  You may also notice words, grammar and sentences can get clipped down to less physically & mentally arduous levels.  I end up doing it more for pain & neurological speech issues where forming a single word can be the challenge of lifting 50kg in one hand.  Like the mind is fully focused on it but it feels like that part of your brain has nails in it, or completely disconnected so trying to do or access what can be a simple skill like speaking just no longer works.  In scuba diving divers use hand gestures to convey even complex concepts & discussions.  It helps when you can recognise the other person is in pain & can read their unspoken messages patiently.  We help each other in anyway we can, even if that means leaving them in a dark room to work through the pain at odd times.

We had 20/20 vision, but during rough flares our sight often has blurring, auras, delays, etc. But these things can change suddenly or gradually. Permanent damage can creep up when not looking.

Where the eye chart comes from? Father Ted  "Slovakia's premier lens manufacturers"

But sleeping with your eyes open does not just make them dry, scratchy, your sleep less refreshed, painful and more irritable.  What we found out recently was the distortion caused by the moisture differential over time was distorting the vision in the eyes.  Years of this caused the vision to become more blurred and my husband could no longer read as well in short distances.  Suddenly text he could usually read from 10m away now could no longer be read even when held in front of him from a couple meters.  The blurring got so bad it became painful to work coding, constantly trying to focus the eyes.  It was time in his 30s to get eye checks usually only those decades older address.

Interesting look inside an eye producing almost artistic views which can get hard to focus on.

He even got to look at the scan of the retina where they look for serious eye diseases including glaucoma, macular degeneration and retinal changes that may be associated with diabetes.  $500 and two weeks later and we had a pair of prescription glasses with tailored lenses.  The difference was noticeable.  The headaches related to the sight blurring during reading reduced, and after getting used to the glasses they mostly stopped, (he still had a host of other headaches but the sight related ones were clearing up).

Yep we lost a couple of glasses so far to the mysterious crows... named falls & lost.

Going forward not only are the glasses required, but also gels, drops & eye masks for every nights sleep.  Finding a good mask appropriate for the task is not always easy.  Most are designed with the assumption the eyes can mostly close as well.  So the linings are bad for contact with eyes and quickly become unsanitary or move around too much.  Ideally something we could regularly clean & disinfect like a form of durable plastic, similar to the gel ones used for cooling but with a better cover for blocking out light.  It is hard & expensive to start the habit of glasses, gels and masks.  They often don't make it into the budget & get rationed.  But now they are a necessity none the less.  There is no question about it.  We must adapt to counteract the issues with eyes open.  Plus we regularly check in on each other, especially when breathing is problematic.