Friday 18 April 2014


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.


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.


  1. Stupid and familiar are what get us through the days. Keep pushing because I am going to feel like rat poop anyway. I know this all too well. I am not sure there is a right way to do this chronic illness thing. Keeping our head above water is about all we can ask for some days regardless of our stupidity. I wish you did not have to go through any of this, but what a blessing you are for sharing what is all to familiar.

    1. I don't think there is necessarily a right way to do chronic illness either. It's so individual. I think there are ways to lessen the burden in a general sense, but even these need to be tailored to each of us and flexible enough to change as our circumstances change. I am proud of myself that those two little plants are still sitting there waiting for me to get my energy up :)

  2. Best of luck on the blog contest

    Sometimes stupid is a good comfort, and somedays stupid is my bet quality.....

    Either way it is a sign of perseverance .... And perseverance is a good thing with the right balance of loving yourself.

    I love the Hebrew God who instructs u to LOVE YOURSELF... I guess he knew that at times, we would struggle to be kind to ourself in the midst is struggle...


    1. Thanks Monshonday. As you say it is a sign of perseverance. Just wish I could get the balance a bit better, but hey I'm only 8yrs in so still learning ;)

  3. Keep persevering, I have been doing this dysautonomia thing for 10 years. My kids were 1.5 and 4 went my heart went to 220 one day... And stayed in tachycardia for the next 10 years... Life is different, I know the curveballs dysautonomia throws, and I know I can ride the crash or rode the wave... Sounds better eh..

    I went through a whole year of deteriorating, that was nuts after progressing up and down... Just to go down down down... Eventually I stopped being afraid and grieving so much... I see that I can handle bad storms, wheel chair at 36, needing help to take care of my kids, unable to shop, those things come and go. There seems like there is no middle ground. I am either on or off. Now ny being on is far from normal ... But I can get some stuff done.. Being off sucks... I spent 3 weeks having a hard time managing sitting upright and then it gets better... I cannot controll dizziness , heart rate BP etc, yoyo is each day... But I look back at 10 years, and some way, by the grace of God, stupid

  4. Sorry my I pad froze. Perseverance and being encouraged by dysautonomia blogs... And I am still here, my kids are14 and12... We live with the new normal, some how like you and mr grumpy, we made it good... Man, I am so encouraged by your pace maker progress, I am encouraged by your hot cross buns, your out doors, your colourful compression stocking reports. It helps me so much to see good things happen in our dysautonomia world. Sometimes the greatest blessing and comfort is reading a blog and someone identifies with my vulnerability and knows how hard living thru a crash is, somebody has the guts to express by fears and I know I am not lone. It is good to know out there people, like you get my most vulnerable self and I see them get through it. It is also go to see that humor is alive and kicking within all of us... The other day I was listening to Whitney Houston sing, I Want to run to you... I cracked up thinking of this a a parody for dysautonomia .

    Balance is hard to find in dysautonomia and living in the ups and downs, but when you find it, it is a new freedom, you stop beating yourself up because you need to conserve energy, sleeping for 2-3 days, happens, staying up for22 hours, will pass, eventually you will breathe better, eventually you will move off the bathroom floor...oh but man, when you go thru these hinge or the first10-20 times it overwhelms you, I am deteriorating, I can 't cope, etc.. Eventually, it seems that you see wow, I persevere in the end, wow, I have character going thri this, stuff, dysautonomia becomes okay, and dysautonomia becomes a living hell... But I am still here, doing less, yeah, life still has meaning, I still smile, I get less bitter, still cynical...

    Just look at the storms you weather, somehow you keep coming home from he hospital, some ow you keep blogging, somehow ou wear batman costumes in bed, model the latest fashions for the vertigo challenged divas. You take something that is profoundly hard, bitter and frustrating and you mold it into something good, somehow a blog with red shoes, your battle other bob, your mocking bob, brings balance to me... And no medical guru does that for me... Because you live in my shoes, you have helped me find freedom in knowing that I can be at peace and balance..

    An uncle of mine had a mlld stroke 2 days ago, he said I woke up, had vertigo, legs were unsteady, had trouble eating... I thought, wow that has never left me for10 years, then I thought wow, some Joe God has seen me thru 10 years of this, I am still here, watching my family and life evolve.

  5. Froze again... So stupid is a beautiful gift to me when harnessed for good... Stupid tells me stop looking backwards at what you cannot do

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  7. Apologies for the typo's... And the auto corrections from Apple.. That make my reply confusing to read...

    Now I will try to sleep, honestly who can expect to sleep with tachycardia .... Yes the lull of adrenaline on my ticker should peacefully put me to sleep... Good night, morning ... Which ever comes first eh... Yes I am canadian

  8. I think its one common trait amongst all of us with chronic illness that we are unwilling to let it take anymore of us than it already has. I am the worst at pushing beyond all sensible limits. I don't like to appear ill in front of others and will push until I am alone and will then collapse rather than give in. Its stupid and I wish I could manage my limitations better so I would be on an even keel. After seven years playing this game I still haven't learnt! Love and best wishes xx

  9. Who wants to give in to the unforgiving bstd that is Bob(Nigel)? It's hard to work out what is giving in and what is simple common sense. Do you have one of those adjustable tables on wheels that fit over chairs/beds, that you could use to repot your herbs? I know from personal experience that when you have something you want to do it nags away at you until you give in and knacker yourself! I wish you strength dear cyberfriend xx

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