Coming up for air.

Should you write when you are in pain, on pain meds and exhausted? Probably not. But when has that ever stopped me? I am not online a lot at the moment. Each time I think I am ready to get going again I am quickly disabused of that idea by the pain that leaves me gasping for air.  I'll get there again. I can see the emails piling up. Get on, reply to one, and down I go again. So bear with me. Pain is an evil beast. 

Down down down. Then coming back up for air. Before the slow descent back down. Tired. Pain. My back has gone out again. Again. Yet again. Once more with feeling. A feeling called pain. An emotion called frustration. A body melting in exhaustion.

One dramatic sneeze-cough combo courtesy of a bug and here I am flat on my back. Circling the drain and going slowly mad.

Stuck, confined, held down and immobile. Knowing that each day in bed equals ten trying to claw my way back to the normal that is decidedly abnormal. Pain medication to make life bearable. Pain medication to drop my blood pressure. Stand straight up equals some relief from pain. Stand straight up equals plummeting blood pressure. Rock and hard place. Pain and more pain.

Get up. Aggravate that disc. That one. Time and again. My Achilles heel in my lower back. One of many that made a break for it way back when I was still functioning. When I was still working and living. When life gave me a 3mth preview of what was to come. 

40 is the new 80. Or 32 back then. When I still believed in miracles and recovery. The stupidity of youth. The pleasant stupidity of a life before illness become my nine to five. And dreams went down as quickly as I slid down to the floor of my office.

Lying in bed. Resting. Letting the worst of the inflammation reduce. More pain meds. No more meds. Balance the meds. Keep the pain at bay. Convince yourself you can leave it a little longer. Just an extra 30 minutes. No, an hour. You can do it. Lets make it two. Convince yourself you don't need them at all. And then BANG, the chase begins. Pain. Pain that was at bay. Pain that if not tamed was at least placed in a cage. Pacing, agitated behind the bars. Back and forth. Tail twitching. Waiting for it's prey to get complacent. For that first weakness to appear.

It pounces. Rips and tears. And the chase begins anew. No time for recriminations. You must chase and chase and hope that you can get back to the moment when it was caught. Held and tied down with ropes and nets. Until you once more tell yourself that it's okay now. The beast is tamed. You can skip that next one. A hot pack, some meditation and a plucky can-do attitude are all it takes.

Then you begin to drown again. Lie immobile on the bed. Breathing through the pain spikes. To chastise yourself once more.

If only.

I should have.

They were right.

Tomorrow the work begins. Tomorrow the small movements. Like water on rock. Small and slow. Time the best healer. The carver of new paths and new backs.

But till then I will come up for air every now and then. To make sure I am still breathing. That the world is still turning. That there is something to return to. A small glimpse of light and hope. Come up for air to be reminded that it's okay to take the next dose. That rest and sleep are okay. Because pain untended is not heroic. Pain untended is talons and claws. Fire burning. Breath taken. Minds unhinged. And longer recovery.

I'm falling apart. And knitting together.

The broken whole revisited.

The broken whole recreated.

Till the next time.

Michelle

Looking up in suburbia

Easter didn't quite go to plan. Saturday I pushed. As a result, Easter Sunday was spent trying to differentiate between passing out and sleeping. I slept though most of our family phone call to our eldest who was having his first Easter away from home. I was at least there on the couch slurring some words in the general direction of the phone. And today I woke up with tired on top of my tired. And my stomach in rebellion. Oh and did I mention a bladder that has shrunk to the size of an M&M? Drink. Pee. Drink. Pee. Drink.... Dysautonomia, the gift that keeps on giving.

The weather has been grey and my mood matched. But today there was sun. So I dragged my protesting body outside to take in it's warmth and cleanse my spirit.

The garden has always been my bliss. But since the move that has taken a dive. The move from temperate rainforest to sterile suburbia has been a hard change to wrap my head around.

This was my world before our move.

Now it is this.

And serenity is hard to find.

But today I was determined to find a small piece of bliss.

I decided to look up....

....and found my back neighbour's flowering gums.

 And blue sky.

And the gums reached out. Filled with squawking honey-eaters and bright red blooms.

 I put up my red umbrella. And laid out my blankets and pillows.

And I watched the clouds.

I had company in the sun.

And snuggles when it became too warm.

There were Great Dane footrests when my head started to spin.

And company whilst I searched for new books to read.

Now as the sun goes down I am just as exhausted, but happy. Sometimes you are stuck in soulless suburbia and sometimes....

....it is where you set your gaze that matters. 

Michelle

Don't forget to head on over here and donate to Dysautonomia Research here in Australia, at The Baker IDI. Lots of exciting research occurring currently and more projects on the way.

You could also head on over to the Australia Writers' Centre and vote for the blog in the Best Australia Blogs Competition.

 

Stupid

Epiphanies seem to happen in the shower. And good blog ideas, most of which I forget as soon as I turn off the tap and the last drop falls half-heartedly from the shower head. The final splat as the drop explodes on the tiles by my feet, seems to time perfectly with the shattering of the whole perfect drop of idea. How is it that the perfect wording exists for the few minutes you are under the water and then dissipate as soon as you step out? Is it the sensation and the noise of the water finally blocking the outer world and allowing the inner full-reign? Or maybe I am just so hypoxic from the heat of the shower draining all the blood to my feet, that I mistakenly believe I transform into a creative genius as the water falls? Some days the hint remains just long enough for me to reach the keyboard. Dripping wet, no glasses, and typing haphazardly from my very piecemeal memory. I know there are keys and roughly were they should be. I tap away furiously hoping that I am making some semblance of sense rather than accidentally activating Skynet. That I can throw down misspelt word salad just in time to get the essence onto the screen. Some days it works, and other times it is an insensible jumble of nothingness. Today it was melange of ideas prompted by a single song.

Just as I was about to step/drag my protesting body, into the shower Sarah McLachlan's song, Stupid came up on my playlist. And I instinctively started singing along:

Night lift up the shades

let in the brilliant light of morning

but steady there now

for I am weak and starving for mercy

sleep has left me alone

to carry the weight of unravelling where we went wrong

it's all I can do to hang on

to keep me from falling

into old familiar shoes

Old familiar shoes. The story of my life. So often I fall back to what I've always done. Even when it hasn't worked. Even when it has ended up leaving me worst for wear. Since becoming ill I have teetered between trying to forge a new and more positive way of doing things and my old anally retentive, must do everything, all the time, push, push, push, way. That old way has served me well over the years. It's very familiar and very comfortable. In some ways it has worked over the last 8 years as well. It led me to a diagnosis, a good team of doctors and treatment. In many ways it has kept me going through the hardest times. But it has also been destructive in many ways. 

how stupid could I be

a simpleton could see

that you're no good for me

but you're the only one I see

The sicker I get, the more I push. It invites failure. It invites trips to the ER and in the end, a poorer quality of life. How stupid could I be. A simpleton could see. It means that I sat out in my backyard this morning contemplating planting two little herb pots. Even though I have had a flair in symptoms the last few days. Even though today I alternate between wet tissue and chewing gum stuck to the bottom of a shoe. I sat there at war between my need to plant those two plants, my need to win, to say "suck it body you aren't going to beat me", and my need to rest. To pace myself so I can get over this latest slump. Win what? That is unclear these days.

love has made me a fool

it set me on fire and watched as I floundered

unable to speak

except to cry out and wait for your answer

but you come around in your time

speaking of fabulous places

create an oasis

dries up as soon as you're gone

you leave me here burning

in this desert without you

Love has made me a fool. And I do love control. I love it even when it doesn't serve me. I love it when I don't really have it. When I deceive myself and believe that I have it all in hand. When I bow down to that control freak part of my personality and wait for it's bidding. Give myself over to that portion of me that is set on one path and devoid of caring. Just can't win for losing. I love that line from Rob Thomas', Her diamonds. I lose out every time I allow that win to happen. I lose, yet I keep doing it. I am so attached to the win that I can't see the loss until it's too late and I am stuck once more unable to stand or on the cusp of an ER visit. How stupid could I be. A simpleton could see. I push and I push and I push some more. I set myself up for failure. So I can beat myself up for failure. I often enter into the push with complete clarity of what will happen. The monkey on my back that I happily feed every day. You're no good for me, but you're the only one I see.

everything changes

everything falls apart

can't stop to feel myself losing control

but deep in my senses I know

I know things have changed. I know I have changed. I know I can't do what I once did. Control is an illusion. A beautiful, comfortable illusion. Everything changes. Everything falls apart. Then you have to find a way to pick up the pieces and build anew. Because doing the same thing time and again and knowing that it'll never work is the height of stupidity.

I need to follow the Japanese philosophy of Kintsugi where the cracks and the broken pieces are woven back together with gold or silver resin. The breaks, the changes, the history of the piece are celebrated as part of the whole not hidden or despised. And the whole, that has changed, fallen apart and been rebuilt, is loved.

I need to change and move on from the old way of doing things. I need to be kind to myself and stop the stupid that is deceptively attractive. I will slowly put myself back together and let the cracks shine golden. Stories on the path to self-compassion. 

One song. One shower. A jumble of ideas. A new path. And two little pots of herbs that are still sitting, waiting, until I am truly well enough to plant them.

Michelle.

Related posts:
Music Therapy

Don't forget to head on over here and donate to Dysautonomia Research here in Australia, at The Baker IDI. Lots of exciting research occurring currently and more projects on the way.

You could also head on over to the Australia Writers' Centre and vote for the blog in the Best Australia Blogs Competition.

Pacemaker Update: 9 Months. The whole not dying part is pretty fabulous.

Nine months. Nine Months! That's how long I've had my pacemaker, Jeri. I get regular emails about pacemakers so thought I should do an update on how things are going. More doctors are looking at them as an adjunct to other treatments, or to allow patients to take certain medications. But in the world of Dysautonomia there is no single reason for having one implanted. And for most, they are a scary and last choice option.

(Jeri is a sexy piece of tech.)

I had my pacemaker implanted after a cold Tuesday in May last year where my body threw me a curveball. One minute I was walking to my kitchen feeling not great, but not unusually unwell. Next I was on the floor unable to get up and calling out for help. My eldest son had to pick me up and help me to the couch where I stayed for hours, grey and starting to panic that I may actually die. A 24hr halter-monitor and ECG later and I was booked in for a pacemaker. Bradycardia had hit. Some switch went off in my body and that was it. My cardio and neuro concluded that the autonomic fibres in my heart had finally keeled over. Although this had happened in other parts of my body I really hadn't considered it happening to my heart. The party line is that Dysautonomia affects the nerves but the organs themselves are generally sound. Crazy thing is that my heart is still structurally sound, but those pesky nerves are rather important to making it work properly.

I had never felt so sick in all my life. My family were worried during the waiting period. Time and again my heart dipped, and stayed, down into the 30s and 40s. My limbs were grey and ice cold. My lips blue. Basically I looked, and felt, like death warmed up on a daily basis. It was a tad scary. But here I am sitting and typing and very happy I made the decision.

How did you know you really needed one? 

This is one of the most common questions I am asked. Apart from the objective data of the ECGs and Halter-monitor, I knew something was really wrong. A lot of patients worry that they might miss a heart attack. That they might miss that crucial moment when they really need to go to the ER. When you live with crushing chest pain on a daily basis it can be hard to know. But the pain I felt when my heart started its slow decline is like nothing I had ever felt. The pain in my chest, neck and arm were far more intense than anything I had ever experienced before and were not relieved by any regular methods. It was scary intense. I could hardly walk. Stairs were out of the question. Everything was exhausting, far more exhausting that anything I had ever experienced before. When your heart is hardly pumping, your body isn't happy. Our normal is abnormal. But there are times when that changes and that is when you have to listen and act.

Was it painful?

Short answer is yes. Though nothing you can't deal with. My one tip? Make sure you get adequate pain meds organised before your surgeon goes home or you are discharged. Ice and a panadol will not cut it. There will be a period where you aren't allowed to move your arm as the pacemaker and wires settle. Once over you have to start moving. You will not want to move your arm. It hurts like hell, but no movement equals frozen shoulder and you don't want that. I did find I had a lot of inflammation from the surgery so a few Nurofen were very helpful. I still have pain as my dodgy collagen mean that the pocket that holds the pacemaker in place regularly has little tears and it does rub across my rib which hurts. But it is still outweighed by the benefits.

Can you feel it?

I can feel the pacemaker and part of the wires that thread down to my heart. Mine was placed under the muscle in my chest as I have little to no fat. Still it sticks out and I can easily trace its shape with my fingers. Most of the time I don't notice that it is working, it becomes white noise, but there are times where I feel a jolt as it kicks in. Which is both reassuring and disconcerting at once.

Was it worth it?

Absolutely. Yes you have to commit to surgery every 10 years for the rest of your life to replace the pacemaker (not your wires, they stay in situ except for exceptional circumstances). But the fear that I could suddenly die is gone. Not only for me, but for my family. My blood pressure is not over-reacting to constant drops in my heart rate like it was. Now I sit at a fun 70bpm. It even bumps my heart rate up to 100 so I can get around thanks to an inbuilt actimeter. My most recent check showed that I am relying on it the majority of the time. It also showed that overall I can do a little more compare to what I was doing beforehand. And did I mention the not dying part? That's pretty important.

(My lovely cardio going through my latest readings. As you can see it is simple to check. Just whip a computer mouse on your chest and watch the monitor.)

A pacemaker will not be a solution for every patient. They tend to be a last resort for patients who have run out of options. And they will not fix any other dysautonomia symptoms. If you have atrial fibrillation, permanent bradycardia, or pauses, they can be a godsend. Their use for tachycardia is less well established, though if you have a reactive bradycardia to tachycardia meds they can be implanted so that a patient can have the meds that act on their tachycardia. There are also a new generation of pacemakers that work on blood pressure which I must say interest me greatly. They are also getting smaller every year.

I wouldn't go back and I have no regrets. It was scary at the time but it is also the best thing I have had done since I first fell ill.

(I am grateful that my cardio read my email, took me seriously, ordered the tests, and got me in quickly. Not even 2mths from go to whoa.)

Next month I have my first post-pacemaker, brain and spine MRI. Now that freaks me out. Not so much about the possibility of it all going horribly wrong and my pacemaker exploding out of my chest, or one of the many other disaster scenarios created in my mind. But being stuck in the Thumping Tube of Death yet again. Now that gives me pee-my-pants level of fear.

Michelle :)

Related posts:
Bradycardia: when your heart goes, meh.
So there's this thing called a pacemaker, and apparently I need one.
Pacemakers, capes and becoming the bionic woman, or Seven of Nine, if you talk to Mr Grumpy.

Don't forget to head on over here and donate to Dysautonomia Research here in Australia, at The Baker IDI. Lots of exciting research occurring currently and more projects on the way.

When the walls come tumbling down.

When the walls come tumbling down
Will you be smothered under the deluge of brick and mortar
Will you be crushed by the weight
Will you give control to sharp edges and pressing pain
Will you lie unresisting
The breath leave your lungs
And the strength your limbs
Will you plead for release
For the rubble to hear you
To beg for it to move.

Or

Will you recognise the strength that flows within
Will you see that it is not a thing of flesh and bone
Will you see that your body is not you
Will you see that worth and strength are found in all
That the form of strength is not what you expect
That you can fight and resist
Even when the flesh you wear fails.

Will you find the crack
The shaft of light through the rubble overhead
Will you claw your way toward that light
Toward life.

Life different
Life changed
Life that will never be the same
Life that leads us in different paths
Life unlike any other
But life all the same.

Strength is there
Within
It may hide
It may shy away
It may seem lost forever
But the search is worth the effort

It may start small
A rock, rough and dull
But it can be polished
Edges smoothed
Wash it clean
And as the dirt falls away
As the first hints appear
It draws you in with it's promise
And the rubble is seen for what it is

An illusion
A lie
For strength was always there
It only needs to be found.

Michelle

When, in a fit of pique, you decide to change your blog's template and then realise you have no idea what you are doing.

(source)

Note to all: do not decide to change you blog's template three days after you've had a long trip to the city for neurophysiological testing and returned home not only with your usual crash from that fun event, but also sporting a fabulous sore throat that feels like someone shoved several bowling balls in there whilst you slept.

Why oh why do I do these things?

Admittedly I've wanted to jazz up the blog's design for quite some time. But this was probably not the time to attempt such an undertaking. You see I have the technical ability of a rock. I know the basics so I can create a post and publish it. Nine times out of ten that goes okay. But that is about the limit of my abilities. Now I must wait for Mr Grumpy to come home and hopefully rescue my poor half-done redesign.

In the mean time apologies for the state of the blog.

The Luddite aka Michelle

Falling down the rabbit hole.

(source)

The last two, three, four months have been hard. My body has decided to do one of those fancy steps down, on the stepwise progression thingy. Or more, screaming, flailing leap, than step. I've tried not to let it affect me but it has. Denial is hard to maintain when you can't do a poo without face-planting on the tiles and being dragged limp and slurring to your bed. Or even better when no one is home and you're lying on the tiles of your bathroom, pants only just covering your sagging butt cheeks and your ever faithful canine companion comes, sniffs your forehead, and then sits promptly on your head. Or when your normally stoic other half keeps coming in every five minutes worriedly touching your forehead. Or you go to walk to the kitchen and end up on your hands and knees behind the couch. Or....

I can walk less. I can stand less. I have less control of my body temperature. And I've started losing weight again. But I have more syncope. And more pain, be it my feet, my stomach, or my head. None of my tricks are working. And as my cardio pointed out last week, I'm out of medical options.

And all of it is beyond exhausting.

I feel like the months have gone past and I missed them. I mean I know I was there. It's not like I have a Delorean or anything. Although that'd be mighty cool if I did. It's just been a fog of illness. A fog that has eclipsed the wider world. It's been one of those times where dealing with my body takes every shred of energy that I have and everything else is shut out into a half-arsed, half done, package of incompetence. Be it blogging, replying to emails, unpacking at our new house, or breathing, it's all been a half-arsed effort.

I find myself picking little bits of random jobs in the vain hope that I'll finish one. I break down the tasks into a hodge-podge of parts that I convince myself are logical. But instead I end up picking such random bits that not even those end up finished. I then of course beat myself up for not doing the important tasks that keep piling up. I want to paint, but feel guilty because I know there are emails to answer. I want to garden but I know there's house sorting that needs to be done. I haven't even allowed myself to catch up on The Walking Dead because I know there are other MUST DO things that are simply falling through the cracks. Not that that prompts me to action. I am out of spoons. Out of energy. Mental and physical. Simply because every last bit of resilience and energy is dealing with the most basic aspects of survival eg staying upright, or laying on tiles and repeating my new mantra "I do not need to go to the ER. I do not need to go to the ER. I do not need to go to the ER".

I've tried to be normal.

Head out for a coffee. Come home head between my legs, be dragged into the house to pass out on the bed. I've been out looking at potential new houses, only to return home a green-tinged blancmange, or simply cancelling at the last moment. I had a lovely visit with my Uncle and Auntie book-ended, by a body intent on expelling everything I have eaten in the last year, out of either of two burning orrifi, face-planting on the tiles in my bathroom, and coma sleep. I saw my cardio in the city last week and am still paying for it today, almost a week later. I have to head back to the city for more neurological tests in less than four days and I have no idea how I am going to manage.

We planned for tea out with friends at an actual restaurant. I prepared for days in advance. But my body said no. I'm not sure if it was the rapid revisit of the plain poached egg I'd attempted earlier in the day or the chunk of perfectly poached egg white that came out of my nose when I sneezed an hour later, that was the clincher. But I was made aware of the fact that I was not well enough to head out into society, or into my lounge. Luckily our friends were willing to do plan B of take away here at home where I could crawl into a ball on the lounge. They even put up with our insane dog who apparently had a snort or 12 of coke before they came. Good people.

But what it comes down to is....

....I'm missing life.

My life.

It's just disjointed pieces of late.

Finding a spot to focus on. A task that I can actually complete in it's entirety seems impossible. Everything is sitting not done, half done, or forgotten in my sieve of a brain.

I waste energy on putting up the good front. I'm coping. It's all good. I can still laugh at it all. Life. I'm playing the part, not really living it. The truth is my body and I aren't doing all that well. Coping with a big deterioration is hard. I should say that out loud ten times. Scrawl it across my mirror and write it on my arms. Because it's the truth. I tell others to that they should speak the truth of illness, the ups and downs, and here am I still hanging stubbornly onto my pride. That message ingrained from my childhood that says "suck it up and be strong, don't be weak." The message I convince myself that I've conquered, until I realise that it's snuck back in and taken up residence once more in that hyper-critical part of my mind that likes to whisper sweet nothings in my ear.

Somehow I lost the ability to give myself the permission for space. Permission to breathe. Somehow I have forgotten that it's okay to say I'm really having a tough time with this crap. That sometimes it gets scary and sad. That I'm tired of being strong. All. The. Damn. Time. And that when you only have a thimble full of energy it's okay to use that thimble for yourself.

Life may be piecemeal for a while yet. But hopefully I'll get better at picking the pieces that are more healing.

I may be falling down the rabbit hole, but even Alice found her way home.

Michelle

Spelt, walnut and cranberry hot cross buns

After many requests, I give you my recipe for spelt, walnut and cranberry hot cross buns. Now given that I mostly cook by eye or feel I had to guesstimate some of my measurements. For example, I use two largish handfuls of walnuts and I sort of sprinkle my cinnamon and all spice until it looks right. So you may need to fiddle with the measurements a bit until you get the right amount for you.

My arms of patheticness mean that I can no longer kneed dough or chop things. Instead I use a Kitchenaid to mix my dough and a food processor to chop my fruit and nuts. I also use a square silicon cake tin as nothing sticks and I don't need to paper or butter the tin. And a trusty plastic re-sealable sandwich bag makes a fantastic stand in for a piping bag. They freeze really well and I will often put half in the freezer for later use so they don't go off.

Making these usual uses up a full day of spoons. But they really are worth the effort.

Ingredients:

Buns.
700gm plain spelt flour ( I use an organic white spelt)

80gm castor sugar

2 sachets dry yeast

2 teaspoon cinnamon 

1 teaspoon all spice

180gm dried cranberries

200gm walnuts

pinch of salt

1 teaspoon vanilla essence

100gm butter

300ml milk (I use a lactose-free milk by Zymil)

1 egg

Crosses.

2 heaped tablespoons spelt extra
water

Glaze.
1/4 cup castor sugar
1/4 teaspoon cinnamon
water

Method.

To make buns.
1. Mix flour, sugar, salt, yeast, cinnamon, and all spice, in a bowl.
2. Chop up walnuts and cranberries (I do this in my food processor as my hands are too weak to cut them) and stir through flour mix.
3. Place butter and milk in a saucepan over low heat. Remove as soon as butter is melted.
4. Make a well in the centre of the flour, fruit and nut mix and pour in warm butter/milk liquids. Mix through.
5. In a separate bowl beat egg and vanilla together. Add to dough.
6. Kneed mixture for 10 mins by hand. (I use my Kitchenaid with it's dough hook as I can no longer mix by hand. It is a rather heavy dough so if using a machine to kneed dough, do it in 3 batches for 5 mins.)
7. Place dough in a oiled bowl and cover with Gladwrap. Set aside in a warm spot for 40mins.
8. After 40 mins cut the dough into 16 equal pieces. Lightly kneed each piece and form into a ball. Place all 16 pieces into a square cake pan.
9. Cover with Gladwrap and set aside for another 40mins.
10. At the 30min mark pre-heat oven to 200C.

To make crosses.
11. Mix 2 heaped tablespoons of spelt flour with enough water to make a thickish paste.
12. Place mixture into a plastic sandwich bag.
13. Snip a corner off the bag.
14. Pipe mixture over risen buns to make crosses.

15. Place now crossed buns in oven for 20 mins. (I tend to turn mine 180 degrees at the 10 min mark to ensure equal browning.)

To make glaze.
16. Place sugar and extra cinnamon in heavy based saucepan.
17. Add a small amount of water to cover sugar.
18. Bring to boil and leave for 1-2mins and take off heat.

19. Take finished buns out of oven.
20. Whilst still in tin, brush glaze over hot buns.
21. Leave 10mins in tin before transferring to a wire rack to cool.
22. Toast and slather with butter. Enjoy!

Cheers

Michelle

And a good song to listen to whilst you chomp down on your fresh hot cross buns.

And the words pour out.

fatigue hits
body splits
mind is lost
is this it
is this all there is
is this all there will ever be
concrete body
made of concrete parts
assembled and disassemble
as I sit passive
time passes
time swirls
fatigue is all
fatigue is everything
pressing pushing
down
down
down
into the earth
it pours up and over
drags me down
immobile
incoherent
incorporeal
spirit rendered
spirit flailing
clawing
broken words
broken dreams
broken body
the tether is at breaking
then
slowly
a moment of reprieve
the first stirrings of re-emergence
the chance
a hope
small
insubstantial
possibility
a light
a hand breaks free
a life breaks free
I break free
exhaustion turns to blessed sleep
freedom
freedom to dream
of better days
and better nights
of time
my time
our time
all of time
time of joy
time of bliss
time of sun on faces
and wind in hair
time of earth through toes
time of soft couches and warm toast
of books and worlds far away
to lose myself in words where exhaustion does not exist
where pain does not exist
where the fatigue of being does not exist
lose myself in words
in hopes
in ideas
in me
in new imaginings
in unlaboured breaths
and unclenched jaws
in loose shoulders and untangled guts
light shines around me
within me
from me
out into the world
to become one with the swirling mass of colours
the infinite variety of life experience
to touch other colours
other spirits
to give and receive
at need
alone in our experience
together in our journey
hands held
hearts carried
worries shared
we forget actions
but remember how we feel
me
you
us
strength in numbers
we are not alone in the swirls of darkness
we are not alone in the barbs of pain
we are not alone in fear and doubt
roads much travelled
when bodies break
roads much travelled
and survived
roads that lead to light
all good quests have trial and tribulation
we come the cusp of failure
so that the light is sweeter
and the sky more clear
us
you
me
all

Michelle

Letting it go.

(source)

A friend posted a video today about a woman with cancer who's friends and family shaved their heads in solidarity and posed for a photo shoot. It was beautiful and I must admit that I teared up. The outpouring of love and support she received in that act was touching. But part of me was also sad. Sad because for so many in similar situations that level of support will only ever be viewed vicariously.

Serious and chronic illness is a litmus test of our relationships. The bonds we have with friends and family are laid bare and many come up lacking. It quickly becomes clear who values you and who doesn't. It quickly becomes clear that bonds of blood and time are not indicators of support. It can be a hard pill to swallow. And, as my reaction to this video reminds me, it is something with which I continue to struggle.

Part of me still wants and expects that certain people will step up. That they will suddenly change their behaviour and act even partway like the people in that video. If past behaviour is the best predictor of future behaviour I should know by now that it's never going to happen. But part of me still hopes. And old hurts are opened anew. You'd think at age 40 I'd have come to terms with those hurts. But instead I sit here musing over feelings that seem to be sitting just below the surface waiting for something to prompt them to rise again.

I'm not alone in these feelings. I've spoken with many other patients who experience the same hurts. Dysautonomia is not a casserole illness, even at the best of times. It's hard to understand, and has no cure. It can last for years and the deterioration can be slow and punctuated by repeated exacerbations. Sustaining the momentum of caring can be exhausting. And yet some manage. When I see others who are surrounded by numerous loved ones, lifting them up and going out of their way time and again to support them, it brings home that that is not my experience.

Some days I am better at dealing with the hurt and others it is hard. I wish I knew the secret of how to let those hurts go. To move on and focus only on the few who have stood the test of time. The true gems in my life. But part of me continues to gnaw on those wounds. To pick them apart and poke them till they bleed.

Illness is a lonely process. No one can share what you go through. But they can provide support. It doesn't take much. A phone call. A text. A silly joke posted on Facebook. A reminder that they are thinking of you, and that they care. A reminder that your life and your experience matters.

It is hard to understand when that doesn't happen. It goes against how I would act should our positions be reversed. When they have been reversed.

I am grateful every day for those who show they care, online and in real life. For those core people who make me feel loved and safe. Who hold my hand when I need it, instead of expecting me to hold theirs because my illness is a burden to them. For those who offer their concern and care and don't tell me how much of an imposition or hardship it has been for them. For those who know what I deal with and how I deal with it, and don't flit in only to tell me how to manage my illness that they nothing about, before flitting out again. For those who give me dedicated time rather than the scraps left over from their busy lives.

I'm going to work on letting those people and the hurt they represent, go.

I'm going to focus on the few who matter. The few who bring love and joy into my life.

I'm letting go of the rest.

I'm going to give myself 

the gift 

of starting the process.

To end expectations.

To end false hope.

This time
I'm going to heal

and shake off the burden

of hurt 

and disappointment.

I need to.

I have to.

I'm letting it go.

Michelle