Monday, 1 September 2014

When the target keeps moving.

(I made this earlier this year to try and remind myself to breathe. 
I think I might have to put it next to my bed.)

Pick a point and focus. That's what I tell myself. When everything is moving too fast and it seems like I'm about to be overwhelmed. Easier said than done some days. Easier said than done most days. I can feel it build. The days where the rubber bands are wound and wound and wound, until they sit stretched and pale on the brink of snapping.

Tiredness doesn't help. The all pervasive exhaustion that wraps around you and through you tying you down and pulling you apart.

No one thing stands out. It's all the things. All at once. When the respite is missing. When you keep thinking it's not supposed to be like this. I should be able to deal. By now. It's nothing new. It's the same old same old. The items are on shuffle, but the playlist is the same. But the down time is measured in moments, not days. Not weeks. And never in months. If there can be caring fatigue, surely I can have coping fatigue. You can take your strong and stick it.

I keep waiting for the planets to align. Those mythical moments where hope is fully realised and something happens. Something. I don't even know what that would constitute at the moment. Some sort of relief? Perhaps. An end to pain. I wouldn't knock that back. An end to nausea. An end to weakness and those days where even the sunlight on a light Winter day is too much for overstretched nerves. The advent of enough energy to do something. Something once more. Still no idea what that something is. But it is. The ability to do something, anything, I want. Just because.

But the planets continue to mock me from afar.

I keep thinking if there's one thing, just one, that rises above the rest, I can focus. I can concentrate my energies on that one point. I can set a plan. I list out my steps and write up dot points. I can address it and solve it and move onto the next. And then reset my focus to the next issue at hand.

And then the target moves. Or another rises up. Or one I thought sorted starts to spring up again. A hint at first. Then a nudge. Then a body slam. And I am back to square one. Or square negative ten, again.

Pick a point and focus. Pick a point. One point. Any point.

Take a breath. Start again.

Take a breath.

Take a breath. 

Shut out the world. Pull down the blinds. Batten down the hatches. 

Ride it out. Ride it out. Ride it out. 

Discard. Remove the layers of burden. Burden self-appointed. Burden appointed by others. Prioritise. Deal with the unavoidable. Ignore the rest. Shake off the unnecessary. 

Focus on the self. The primal self. The needs of now. The keystone without which the rest will fall. 

The definition of insanity is said to be doing the same thing over and over again and expecting different results. I know it, and yet I keep falling back to old patterns. I know it, but it is so much easier to retrace old paths. I push too far. I fall. I push too far. I fall. The familiar two-step. I know in my heart it'll end in tears, yet each time I convince myself that this time it'll be different.

Pacing. Self-compassion. Tied inextricably to a personality that wants to fight them on the beaches. Them being me. Them being my body. Them being systems comprised of nerves and neurotransmitters, cells and blood vessels. I dig in my heels to fight unconscious processes that simply do what they do. No plan. No intent. And I fall.

So I curl up and binge watch programs that I have seen a dozen times before. I curl up and look out the window. Watching the finches flit in and out of the bushes by the fence. I curl up and feel the soft fur of Freyja under my hands. The comfort of her warmth and familiar doggy smell. I curl up and watch the candle flicker on the top of my tallboy. I curl up and smell the soap sent by a friend. Part of a non-casserole care package. I curl up and breathe. I curl up.

And I'll stay curled up for a while. Tightly wound in my shell. In soft clothes and soft sheets. In soft light and soft sounds. Until it finally suffuses my being. Until I can feel it's gentle hum throughout. And I am restored. And healed. In the ways that matter. In the ways of the soul and the spirit.

So that's where I'll focus. That's where my small amounts of energy must be directed. Must. Must and Me not two words I normally associate with each other. It grates and feels wrong. But I will tie them together. Bound until they become familiar and comfortable. 

And I'll write it out again. I'll spew the words onto the keyboard. Empty it all out, so there's room for the things that will sustain.


That not everything is gonna be the way
You think it ought to be
It seems like every time I try to make it right
It all comes down on me
Please say honestly you won't give up on me
And I shall believe
And I shall believe.
Sheryl Crow - I shall believe.

This is one of the songs in my angsty play list that tends to be on high rotation when a bump in the road sends me off into a ditch. Not everything is gonna be the way you think it ought to be. Time to learn that lesson again.


  1. Honestly. I won't give up on you! None of us will. We are all here, maybe out of arms reach, but within the reach of your heart and soul, within the grip of your words and under the shadow of your struggle. We're here.
    Do whatever it is you need to do to get through each moment Michelle. I hope some respite arrives soon, somehow. Some way.
    That song is awesome. I have never heard it before and I love it.
    Kia Kaha. There are many ways to stand strong X

    1. Thanks Rach, I know you've got my back. I think I'm just beyond exhausted at the moment and the trip to the city for the youngest on the weekend has set me back again. Glad I went but payback is very exaggerated at the moment.

      If you like the song you should check out the album. It's an oldie The Tuesday Night Music Club. Has a lot of great songs on it, like Strong Enough (another on my angsty playlist). Reminds me of my boys as I used to play it late at night when I was rocking them back to sleep when they were babies xx

  2. Another beautiful poignant song Michelle....
    I echo Rachel's comments.. there are many of us out here within reach, although not geographically practicable but on our keyboards and in the other ether where our thoughts travel.. you only have to ask..we will reply and respond in the best way we can.

    wishing you speedy respite.....

    1. Thanks Anon. I think at the moment it's a case of hide under the covers and try and rest up. Lots happening in that whole life thing on top of illness which is exhausting. Appreciate everyone's kindness. Really means a lot. xx

  3. Here in the Northern Hemisphere... Not giving up on you from up here either... (and glad you did get to the City, even if it took a lot out of you... you made it and back!)

    1. Thanks Mel. Appreciate it. I'm glad I got there, just underestimated pay back even though I knew it'd be bad with the way things are at the moment. Just gets tiring when there never seems to be a break of late. xx

  4. Michelle, thank you so much for writing this. Your posts and blogs always seem so timely - it's uncanny. Especially now. As I feel like I am watching my life play reruns of the same hell over and over - the same show that my father lived through. There are the good times that we cling to, but it can be so hard to not question why, or what we have done wrong, and isn't nature wonderful?

    I have been enlightened and encouraged my your works for what must be close to a decade now. I seem to remember us first connecting on DS, then MySpace, and now Facebook. I cannot thank you enough for pouring your words onto the page (or computer screen, as it may be). Even my mother sends me links to your blog, telling me how "that Michelle"-how "witty and informative" you are. You help her to understand in a way that I could never convey to her. In a way that my father never could either... (we have/had an early-onset HSAN2a). So, thank you, Michelle. Thank you for being a voice for so many and for helping us not feel all alone - for giving me someone to personally identify with For having the balls and the mental determination to put down your words.

    1. Thank you so much, Jen I really appreciate your kind words. I'm glad I can give something back to everyone who has supported me since I became ill. Though it makes me giggle that your mum mentions me :)

  5. I think we just got old before our time. And that old people, nearly all of them, struggle with ill health. Not much is expected of the old, I fear, except that they accept suffering gracefully (I fear that too - how is suffering graceful?). In our culture the elderly can be dismissed or praised, according to the needs of the social narrative discourse. The same with sick people. We can be dismissed as being useless or we can receive praise for being an 'inspiration.' We can be the same person and receive both messages - depending on the narrative discourse. Our bodies may act like they are old, it may be in our best interests to accept the suffering gracefully, (not sure how to do this when the head pounds for days or the gut means being curled into a ball trying to breath through the pain), but remember that we still have a voice that puts out, into the world around us, ideas of a new perspective. We have important things to say, life lessons/thoughts on life we can pass on, although our 'audience' may be much reduced. Ands sometimes they will want to hear us and sometimes they won't -- depends on the narrative discourse. The minute by minute altering zeitgeist.

    And we are always listening. Always hearing. Our capacity for understanding has proved boundless. New horizons we never would have realized pre illness, have opened up for us. We lose some coherent thought at times, but what we lose in coherence at times is made up in length and breadth and depth of thought. When we manage to coherently convey what we are thinking we really have something to say.

    Better that I don't rely on others for my self respect. Rather do what I can do. When a person I love calls on my help, hopefully I will have rested enough that I can answer that call to help. That's when it's the right time to push, for me. I had begun to think that I should be saving my ever changing number of spoons to enjoy good times, those times of as much hedonistic pleasure of which I am capable. Even if it's just a visit to a park. I will feel restored. But that feeling does not last. What I have discovered lately, (and my discoveries are subject to change -- every single one of them), is that the moments I use to help someone, just to listen to them, to be there for them, to push myself to do something for them when I can, brings a reward so much greater and longer lasting than that 'visit to the park.' It's not that the visit to the park is not lovely for me, and sometimes very necessary -- as Russell Brand said, "sometimes the trees are enough." My self respect is to be found where it was always really found, not in the approval of others but in doing something for others. Just giving, even if it's just a smile, or a look that lets the other person know I understand. It's not doing anything for the approval of others (holding down that 'successful job' and having all the accoutrements that come with such a job, the 'right car, the right schools for our children, the right style of dress.. blah, blah, blah) that gives self respect, I find. It's doing things for others that gives me a good feeling called self respect.

    Michelle, you have done a lot for others. If you did no more you will have done plenty. Your goal post of reaching out to others has never changed or moved. That goal is firmly in your sight. And you actually have scored so many times. You do realize, don't you, how much you have given to others? That is the stuff of self respect. Each time you wrote something you scored a goal -- many goals. We will always strive for the changing ones but the goal, the goal of helping others, that never changes. It's always there. And you lob the ball right in, dead centre, over and over again.

    1. Thanks Billie-Blue. I hope I've helped others. When I left work and everything went pear-shaped I thought I'd lost me. I loved my job and helping others, so I have always hoped that what I write can help someone. So much of what we experience we feel alone until you here someone else talking about their experience. I guess it goes both ways. I get a lot from all the lovely comments people leave. Makes me feel less alone too. xx

  6. I push too far, I fall. I push too far, I fall.
    I am right there with you:)
    I always feel less alone after reading your thoughts!

  7. Difficult times....I don't know how to make sense of the days when it seems all you are forced to do is remember to work on breathing in and out... It is almost as if everything in your brain goes nuts. I know when I hit those days, I had to save myself from my thinking. I had to turn of my head and rest from stimulation and let my body settle down. So hard to do when you are scared, angry and in deep physical psychological and spiritual pain. My key was to start with the spiritual pain... Listening to music that lifted me up and acknowledged my weakened state and to close out my own thoughts. It seems like a lack of O2 impaired my perception, I let go and rested in faith, that it was not my time. Pain control of meds was a must....

    Michelle your so tough, such a fighter, sometimes the hardest fight is resting and knowing that if today is the day that all you can do for yourself is breathe in and out... Then that is the job of the day. I know those are the saddest, hardest days... Lonely, grief filled, because our mind rebels and says I was made for more, I am too young to feel this old...

    I pray you find your peace in this hard time, I hope people's messages of encouragement , whit and love help you out as u deal with this inhale exhale day. It is good to know you are loved deeply and it is not based on what you can do for others... Your just loved because your a vibrant, caring, funny, creative lady from down under

  8. iPod froze

    Hope your feeling the love from your comments sections. I know on my hardest days your blogs helped me.. I don't know where I would be if I didn't have bloggers that dared to embrace and write the truth about suffering and hope.. I don't know how many days I googled dysautonomia and coping to get me thru the hardest days...

    Still up and down days... It is okay to rest... Sometimes it is best not to think...

    Dick van dyke show reruns work for me....



    1. I am feeling the love and really appreciate it. Such a supportive community and that makes it all that little bit easier to deal with. The tough times suck but I make it through thanks to all you guys xx

  9. OMG - I used to do that too, leave signs up to remind myself to breathe. Because the body forgets, you know?


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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