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

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

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.