Take up your spade

(Sometimes you have to find a spot to focus when upside down and inside out.)

Every now and then you stumble over a song and the visceral hit can't be ignored. This is one of those songs. One of those times where life and the planets align, and suddenly every word and every note line up as the perfect salve to the moment.  

I think I need it as my morning song. Especially after nights like last night, that involved a tear on my pillow and trying to fumble quietly in the dark for pain meds, bent in two, and shaking from the stabbing in my stomach. That shit doesn't ever get easier. But you get through it somehow.

I had an ER doctor look horrified when I explained my daily abdominal pain last year. He couldn't believe that I was sitting in front of him smiling (I may have been helped by endone at that point) and talking about it so matter of factly. He looked from me to David and back again, and I was struck by how abnormal my normal had become. You adjust. It's weird but you just do. Sure my normal isn't like other normals but it's just life. You make the most of the cards you're dealt. I don't know if there's a magical formula to get there. I know I slip back and forth with dealing. But somehow I always drag myself back. Battered and bruised but back in the world.

Sometimes it's simply about believing that there are other days and other nights. And that you can drag one foot in front of another. Sometimes its a song that pops up in your life at just the right moment.

Having listened to many of her songs over the last couple of days I am well and truly a Sara Watkins fan. I am late to the party given she's been around for years. Or maybe I came to the party at just the right moment for me.

Enjoy.

Michelle

Low High

Earlier this year I was super excited to head to my first concert in years. I haven't seen a live music act since becoming ill in 2006. I had tickets to see Scissors Sisters way back in 2007, but had to give them up as I was spending more time bent over my toilet or communing with the floorboards than upright. Then this year, which has been my year of worsening health and also the odd, "Screw it!" moment, I decided I was going to a concert.

I wrote about my excitement. Ella Hooper had put out a song The Red Shoes and it seemed kismet had finally gotten off it's arse and said "Here you go Michelle. After a year of shite and nearly a decade of crap you get to have some fun." In all fairness to kismet I may have misheard or misinterpreted it's words. My cognitive function can be a little poor on occasion thanks to that whole poor blood flow thing.

But here was a song about red shoes, put out by an artist I've followed for years, my shoes ended up in her fan video for the song, Mr Grumpy bought tickets, the venue was happy to help me negotiate the stairs, Ella even chatted on Facebook, and the single launch fell exactly on the one year anniversary of getting my pacemaker, Jeri, put in. All I needed was a choir of angels and nymphs throwing rose petals before me to fill in the moment to perfection.

(Artsy photo of The Red Shoes ticket in my red shoes.)

Then I stupidly declared to the world I was telling my body, "Screw you, body. I'm going to a concert. You can't stop me!" And like the petulant child it is, it raised my "screw you" with a "screw you and the horse you rode in on."

A few days before we were supposed to be heading to Melbourne my symptoms started to flare. I put on my blinkers and started some very peppy self-talk.  But things got worse, and worse. So on the day where I was supposed to be in Melbourne seeing Ella Hopper and bopping along to The Red Shoes, I was stuck in Emergency.

(Screw you body, I'm still wearing my red shoes! Even if they are squishy slippers)

I think I held it together for about the first hour, but I am not ashamed to admit there may have been tears. And for about a week after I rocked some fine ennui. Good ole Mr Grumpy did offer to still drive me to Melbourne to catch the last hour or so if I wanted, but a three hour car trip after an afternoon and early evening spent in Emergency was not exactly the best move. So I chose a pity party for one instead.

Cue a few months later and Mr Grumpy spots that Ella Hooper's album launch for In Tongues is happening in Melbourne on the 6th of December. Unbeknownst to me Mr Grumpy contacted the venue to see if they are wheelchair friendly. Sadly no, but they are very happy to accommodate me and hoik me up the stairs so I can go. After some discussion about me not wanting to get my hopes up and not wanting to waste cash again, Mr Grumpy had his own "Screw it!" moment and I am now the proud owner of two tickets to the Melbourne album launch!

(My nanna self is usually putting on her pjs and getting ready for bed at 9pm.)

So next week I am making my way to the city again. Praying to every known deity that my body will hold it together so that finally I can see Ella  Hooper sing The Red Shoes while I dance badly in my chair and sing along. No idea how long I'll last being late at night and the Summer heat, but Screw It! I'm going to give it a go.

I'm going to carpe the crap out of that diem!

Michelle

Update:

We made it! We stayed in a hotel that looked like it would fit in an episode of CSI and I am grateful there was no blue light. I frocked up. We drove into the city. Mr Grumpy carried me up the steep stairs of the Ding Dong lounge while the lovely staff did everything to accommodate us including reserving a booth up front so I could sit and see (kinda good as I ended up having to put my legs up and take extra meds as the nausea and shakes began.) I had a forbidden glass of wine and finally met the lovely Ella Hooper.The show was amazing and I had the latest night out in years. Afterwards we zoomed around the streets of Melbourne in the rain, bouncing across cobblestones and tram tracks in my wheelchair and had a ball. I was wiped out for about a week after but as you can see from the last photo I lay in bed with Freyja by the bed and listened to Ella's album.

Sometimes it really is a case of if at first you don't succeed and end up in a hospital ED, you just need to try try again, and medicate yourself to the enth degree and have a husband determined to make your dream come true.

Low High seemed the perfect pick off the new album. Amidst all the highs and lows of late I'm focusing on loving and living this life I have.

 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $4,300, keep donating and hopefully we can reach $10,000 (ends Dec 9th 2014).

Julia: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

(Wonder Woman)

The final piece for Exploring Dysautonomia Through the Arts comes from Julia. I loved this song from the first time I heard it and thought it was an appropriate way to end the month. Living with any chronic illness is filled with challenges and Dysautonomia is no different. But as hard as it is at times we all keep putting the next foot down on the path. We fight big and small battles each day, but we are all still standing. This month has really shown the creative spirit that exists in the community and I've found both inspiration and kindred spirits. Huge thank you to everyone who has submitted, read, commented or shared.



Julia contributed to last years Dysautonomia Awareness Month that focused on Australian and New Zealand stories. You can find her story here.

This is a song that I wrote (with the help of a friend whi is a music therapist). I was having a really rough time last year and couldn't sleep because of everything that was going on so I thought I'd put my words to music. It it the first song I have ever written.

I'm Up For the Fight 

I'm always behind

Always having to catch up,    

Catch Up

If I could just get through

With no hiccups,   

Catch up....  Catch up

If it’s not one thing

It’s another

But I'm always up for the fight

If it’s not one thing

It’s another

But I'm always up for the fight

If it’s not one thing

It’s another

But I'm always up for the fight

I'm done with one thing here comes another

But I'm always up for the fight

Every time I try to just, just be

Just be

It’s like my body is punishing me,    

Punishing me

Stop, punishing me

[CHORUS]

At night when my brain is spinning

Reality can hit hard

My days are filled with denial

Reality can be hard, 

Can be Hard

Reality can be hard

[CHORUS]

I'm up for the fight ----------- (x4)

[CHORUS] 

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,500, keep donating and hopefully we can reach $10,000.

Sarah: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

(source)

Today on Exploring Dysautonomia Through the Arts is the first song offering courtesy of, Sarah. I am constantly amazed as each submission is able to capture another aspect of living with Dysautonomia and chronic illness. The ideas of burden and inconvenience Sarah explores are something with which I continue to to struggle.

I'm a 22 year old musician, I've recently moved out of home hoping it will help my health; I have a neurologist, cardiologist and a great gp. My family and friends try to understand my illness but they don’t. How could they? So maybe this will help people understand. 

My piece is a song I wrote last year about my struggle with keeping relationships together while Dysautonomia controls my life.

I wrote it while at university, I was diagnosed with Neurocardiogenic Syncope within my first year, I was passing out left and right, having seizures and terrible pain. I would lose consciousness on average of 8 times a day, everyday; my biggest seizure/convulsion attack lasted for more than 14 hours straight. 

Often, I’d be unconscious on the floor of a classroom or in the hallway at uni, most people would leave me and I'd be there for hours, though some special people sat down and tried to help me. This song is how I feel about that, I'm grateful that they try to support me, but I don't know why they do – I’m an inconvenience, I make life hard by just being, I can't ever return the favour. 

The song is called Let You Go. In the lyrics I talk about the struggle of deciding to cut myself out of everyone’s lives for good just to make it easier for them because I'm such a burden.

We are in our pjs because I wanted to dress is my 'I’ve given up on life clothes,' to show that struggle affects every part of me and it’s too hard to keep trying sometimes. 

"The lyrics can be a bit confusing if you sort of don't understand, so as most of you know I have this condition thing where I pass out and convulse and stuff…so it’s sort of about that how people will come and look after me but I don't really know why they're doing it…because I can't look after them, 'cause they're not screwed up in the brain like I am, I can't give them anything in return and I don't really understand why people would help me. So this is what this (song) is about.”

Let You Go – Sarah Foord
lyrics:

I never wanna let you go,

And I don't know, what else to say.
I never wanna let you go,

And I don't know, what else to say…

‘Cause you take my pain.

I wanna do that for you, babe.

Oh you take my pain,

While you have nothing to gain…

You always hold me tight

While I try to fight the ghost in the dark.

You'll always hold me tight

While I’ll try to fight the ghost in the dark…

‘Cause you take my pain.

I wanna do that for you, babe.

Oh you take my pain,

While you have nothing to gain…

I love when I'm lost,

‘Cause you're always there.

But that’s not fair…

I never wanna let you go,

And I don't know, what else to say.
I never wanna let you go,

And I don't know, what else to say…

‘Cause you take my pain.

I wanna do that for you, babe.

Oh you take my pain,

While you have nothing to gain…

While you have nothing to gain…

While you have nothing to gain.

This song is protected by copyright and belongs to Sarah Foord

*(NCS: Neurocardiogenic Syncope; POTS: Postural Orthostatic Tachycardia Syndrome)

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,200, keep donating and hopefully we can reach $10,000.

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.

Happy songs for less than happy days.

The last few months have been pretty big on the bleech side of the ledger. I could bore you all stupid (and myself if I'm honest) whilst I list off all my woe-is-mes. But really that wont change the majority of them. My other option is to pick myself up. Dust myself off.  And at least attempt to find my happy place. I've found it in the past and I know I'll find it again. But sometimes you have to do the hard yards before you get there.

As part of that journey I have been using music. Lots of different types of music, for all sorts of genres. But I decided to push a bit more and be a bit more direct for my dull brain and find Happy songs ie Happy or some version of the word in the title. So here's a bit of a list of my latest listenings, plus a few suggestions from my trusty friends on Facebook.

So if you're feeling a little down play a few and sing along. Play them loud, dance away, tap your fingers or your toes. Break out some fabulous spirit fingers or dance in your mind. What ever takes your fancy.

And hopefully they can bring a little joy.

Personally Judy and C2C tend to be my play it loud and sing along songs of choice, but there's a little something for everyone.

1. Pharrell Williams, Happy (2013)
 

2. Goldfrapp, Happiness (2009)
 

3. C2C, featuring D. Martin, Happy (2012)

4. Judy Garland, Get Happy (1950)
 

 5. REM, Shiny Happy People (1991)
 

6. Boney M., Happy Song (1984)
 

7. Kermit the Frog, Happy Feet 
 

8. Bobby Ferrin, Don't Worry Be Happy (1988)

9. Otis Redding,The Happy Song (1968)

Feel free to add any others in the comments.

Cheers
Michelle :)

Music Therapy

This post is dedicated to my dear friend, Autumn. A  fellow patient and Foo Fighters fan who's doing it tough right now. Send her some love. I hope things pick up for you my friend and you find some relief. xx

(My old battered copy of, One by One. Well used and well loved.)

I've been having another rough patch over the last few days. Just another trough in the usual roller-coaster ride that is Dysautonomia. Fun times. I have been perfecting the art of woe-is-me, hidden under the bed covers. Going for gold, people. None of this half-arsed whinging for me. In between moments of dramatic self-pity and swooning, I have also been playing my 'feel better' playlist on loop. All in the hope it'll pick me up and start me on the road back to normal levels of crap health. It's not the classic 'feel better' list, filled with touchy feely, treacle tunes, that most expect. Whilst I do have a typical emo list that I can sob away to at need (and lets face it ,we all need to do that at times), most of my 'feel better' list is far more rocky.

Music plays a huge part in my life as it does the lives of many. And my musical tastes are eclectic to say the least. I have a variety of playlists and artists that I follow, all of whom fit my differing moods. Some days you need a bit of alternative acoustic or jazz classics and yet other days you need to lose yourself in an 80s power ballad or some kickarse rock tune. In amongst all these tunes I have a small select collection of songs that rise above the others. Songs that have resonated with me from the first time I heard them played. There is something in the lyric, or the rise and fall of the melody, that just connects. I couldn't necessarily tell you why. But that song was there at just the right time. That magical moment when mood, need and music collide.

I often wonder if artists truly realise the impact their songs can have on the lives of those who listen to them. People who they will likely never meet, but are truly grateful that they took the time to pen those particular words and then, to share them with the world. That the three or four minutes of cracking beats and well-crafted words they create, can help people through the toughest and best times of their lives. I hope so.

Does it matter that what I find in the song may be different from the intent, or inspiring event, of the artist? Or does the fact it stirs something in me, something personal and visceral, fill the artist's intent? In turn emphasising the power and gift of both song and song writer? To be able to create something that stirs other people and resonates years after it is written is a gift and one I hope the artists know we cherish.

What stirs me may mean nothing to others. Similarly, what stirs others may remain a mystery to me. That is the power of music. We all have a need to be lifted up when times get tough and there is always a tune somewhere that'll be up to the task. An artist who speaks to your heart in just the right way.

One of my favourites came up on my newsfeed today and I immediately had to click play. You see when any of those central pick me up songs, comes up in my newsfeed, or I hear a snippet in a shop, or on the radio, I find myself reflexively singing along. Mostly under my breath or when I am having one of those completely oblivious days, singing out loud no matter who's around. And always that same feeling is evoked and everything just feels better. Just like smells can bring back memories, music for me can bring back a whole range of emotions.

Times like these, by the Foo Fighters came up today, and it is one of my seminal songs. Actually, I have a few Foo Fighters' songs in my list, Best of You and Walk are also known to be played loud when I am having a shocker of a day. But today it was Times Like These and I found myself singing along before the video even began.

   

I love the rockier version, but this acoustic version brings the words to life for me.

I've loved this song from the first time I heard it in my pre-sick days. And now that I am ill it has become a staple of my collection, and one to which I always come back.

I am a one way motorway

I'm the road that drives away

then follows you back home

I am a streetlight shining

I'm a white light blinding bright

burning off and on.

It's times like these you learn to live again

It's times like these you give and give again

It's times like these you learn to love again

It's times like these time and time again.

I am a new day rising

I'm a brand new sky

to hang the stars upon tonight

I am a little divided 

do I stay or run away

and leave it all behind?

It's times like these you learn to live again

It's times like these you give and give again

It's times like these you learn to love again

It's times like these time and time again.

The chorus just rings true for me. "it's times like these you learn to live again". Being sick it is easy to feel helpless and hopeless. But it can also be a time to relearn and reinvent yourself.

I didn't plan on being so ill. I didn't expect to spend my 30's as a medical guinea pig. I didn't expect to require a wheelchair or cane or a gigantic dosette box to house my ever increasing pill collection. For a long time I let that weight bear down on my shoulders at will, and felt defeated.

But I sit here almost 40 and realise that I have learnt to live again. Not just live, but enjoy life and all aspects of it. I don't enjoy it despite the painful and darker parts. I enjoy it because of them. Those harder aspects of life make the good parts shine even brighter. They serve a definite purpose in my life in that I now have an appreciation for the little things that make me happy. Things that I would have missed before. They forced me to re-evaluate my life and my perceptions and to realise that enjoying life is a choice, not defined by my life circumstances.

And all of that is captured in that one song.

I have no idea if that was what Dave Grohl or the Foo Fighters had in mind when this song was recorded, but it is what I take from the lyrics. Those words and the music they are so carefully wrapped in, hold all that and more for me. I don't care if anyone else can understand that. This is my song. You can have yours. I know that Dave Grohl will never know how much his words mean to me. That this slightly strange woman from Australia, sitting on her couch surrounded by dogs and coffee mugs, hears that song and it works like a panacea for the soul during those tough times. He will never know, but I am still thankful that he wrote them.

Cheers
Michelle :)

Are you a Foo Fighters fan? Or do your tastes run in different directions? What are some of your favourite pick me up songs?