I Don't Feel Like Dancing

No sir, no dancin' today.

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

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

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

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

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

I Don't Feel Like Dancin' - Scissor Sisters

Wake up in the morning with a head like 'What ya done?'

This used to be the life but I don't need another one

Good luck cuttin' nothin', carryin' on, you wear them gowns

So how come I feel so lonely when you're up gettin' down?

So I play along when I hear that favorite song

I'm gonna be the one who gets it right

You better know when you're swingin' 'round the room

Looks like magic's solely yours tonight

But I don't feel like dancin' when the old Joanna plays

My heart could take a chance, but my two feet can't find a way

You think that I could muster up a little soft-shoe gentle sway

But I don't feel like dancin', no sir, no dancin' today

Don't feel like dancin', dancin'

Even if I find nothin' better to do

Don't feel like dancin', dancin'

Why'd you break it down when I'm not in the mood?

Don't feel like dancin', dancin'

Rather be home with no one if I can't get down with you...

Cities come and cities go just like the old empires

When all you do is change your clothes and call that versatile

You got so many colors make a blind man so confused

Then why can't I keep up when you're the only thing I lose?

So I'll just pretend that I know which way to bend

And I'm gonna tell the whole world that you're mine

Just please understand when I see you clap your hands

If you stick around I'm sure that you'll be fine

But I don't feel like dancin' when the old Joanna plays

My heart could take a chance, but my two feet can't find a way

You think that I could muster up a little soft-shoe gentle sway

But I don't feel like dancin', no sir, no dancin' today

Don't feel like dancin', dancin'

Even if I find nothin' better to do

Don't feel like dancin', dancin'

Why'd you break it down when I'm not in the mood?

Don't feel like dancin', dancin'

Rather be home with no one if I can't get down with you...

You can't make me dance around

But your two-step makes my chest pound

Just lay me down

As you float away into the shimmer light...

But I don't feel like dancin' when the old Joanna plays

My heart could take a chance, but my two feet can't find a way

You think that I could muster up a little soft-shoe gentle sway

But I don't feel like dancin', no sir, no dancin' today

Don't feel like dancin', dancin'

Even if I find nothin' better to do

Don't feel like dancin', dancin'

Why'd you break it down when I'm not in the mood?

Don't feel like dancin', dancin'

Rather be home with no one if I can't get down with you...

I don't feel like dancin', dancin'

Even if I find nothin' better to do

Don't feel like dancin', dancin'

Why'd you break it down when I'm not in the mood?

Don't feel like dancin', dancin'

Rather be home with no one if I can't get down with you...

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

All Shagged Out While Feeding the Eels

Pied Shag with the NZ guide providing recording of male adults

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).

NZ Freshwater Longfin Eel

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

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

See if you can spot all the visible shag nesting perches

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

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

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

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

I Like Birds - Eels

I can't look at the rocket launch

The trophy wives of the astronauts

And I won't listen to their words

'Cause I like

Birds

I don't care for walkin' downtown

Crazy auto-car gonna mow me down

Look at all the people like cows in a herd

Well, I like

Birds

If you're small and on a search

I've got a feeder for you to perch on

I can't stand in line at the store

The mean little people are such a bore

But it's alright if you act like a turd

'Cause I like

Birds

If you're small and on a search

I've got a feeder for you to perch on

If you're small and on a search

I've got a feeder for you to perch on

I've got a feeder for you to perch on

If you're small and on a search

I've got a feeder for you to perch on

I've got a feeder for you to perch on

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.

 Charity helping Aucklanders with Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia

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

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

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

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

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

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

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

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"