Sunday 24 July 2011

One day.

There was a thread on one of the Bob forums I read, that posed the question, " If you could be given ONE day without dysautonomia, what would you do?" It's the sickie equivalent of "what would you do if you won lotto?" but with more answers relating to number twos than holidays to Europe.

It's not really a question that I have thought about, especially not in recent years.  Initially, I was still viewing the world through delusional rose-coloured glasses which told me that recovery was a possibility.  Now, I'm resigned to the fact that it's not going to get better, and, after my Uberneuro visit, that my current state should be viewed as my glory days, as its only going to get worse.  Good lord, that sounds so doom and gloom.  And frankly I'm not ready to process, let alone write about that in any deep and mature fashion.  Bring back denial dammit, it's my favourite of all the coping mechanisms.

Going to my happy place.  
Going to my happy place.  
Going to my happy place.

Ahhhh.......happy place.

Where were we?

It's actually taken me a while to think about what I would do with a day of complete health.  Part of me feels like I should say that I would spend it doing things with my family, because that is the PC answer these days.  Not knocking those for who that is their hearts desire, but for me I'd be lying.  I love my family, I do, but I focus every available shred of energy on them, every day.  Don't get me wrong, I don't begrudge that in any way.  I do it by choice and because I love them.  But should that one day ever arrive I have other plans. 

I would be independent Michelle once more.

I would put on my Dorothy Shoes and favourite green dress, and head into the city.
I would drive the whole 45mins, by myself.
I wouldn't plan for loo or puke stops.  I wouldn't worry that I would get into town and have to turn back.  I would drive without considering any of those issues.
I would wander up and down the many arcades in the CBD, in my inappropriate footware.  
I would savour every blister and would love that initial painful surge of blood back into my feet, when I removed them at the end of the day.
I would try on overly priced clothes in the boutiques.
I would take time to enjoy the beauty of the Block Arcade.
I would sit in a little cafe in an alleyway, drinking hot, rich espressos, and simple watch the world go by.
I would eat tapas and slices of wondrously rich cakes.
I would walk to the gallery and wander through the exhibits.
I would stand on the Prince's Bridge over the Yarra River and watch the boats float by.
I would enjoy the hustle and the bustle, the smells, and sounds of the city.  
I would walk down to China Town and eat Yum Cha and marvel at the glorious golden ducks hanging in the windows.
I would lie, flat on my back, in the Botanic Gardens and watch the clouds scoot over head.
I would have small talk with the lady in line at the coffee stand.  The weather, the crowds, who will win the footy.  No talk of canes or illness.
I would sit in St Paul's Cathedral and soak in the silence, a world removed from the city sounds that surround it.
I would sit in a little restaurant in Collins St.  Eating a meal composed completely of entrees.  My table close to the window to watch the people and the lights roll past.
I would watch the seagulls fly around the spire of The Arts Centre, deluded by the bright lights to think it was still day.
I would stand in front of Her Majesty's Theater and marvel at her beauty in the soft glow of the lights.
I would wander back to my car, my step light and my heart full.
I would drive myself home inhaling the beauty of the string of tail lights strung out before me.
I would open up the windows and let the cool air rush in and tangle my hair.
I would skip up the steps at home, two at a time.
I would snuggle on the couch with my kids and my husband and tell them about my day.
And I would breathe.
I would be normal.
I would just be.

That would be my perfect day.  

No contingencies. No sickness. No dependence.

That's what I would do with my one day.  What would you do with yours?

Michelle :)



  1. Oh Michelle that sounds so lovely! What a perfect day! Makes me want to make a trip to Melbourne now!

    Gee, can I chose which day I dont have POTS/dys? Like plan ahead? I guess I can because this is my own little fantasy right!

    I would have a POTS/dys free day the day I'm getting married. I could get up early (early= before midday), shower standing up, and eat a big breakfast without worrying about it promptly coming out of either end or fainting or having to rest in between each activity. I wouldn't have to try to chug down 2 litres of water and electrolyte mix before the ceremony and feel all water-bloated.

    Hell, I could even stand up for the ceremony! and all the photos, and the canapes/drinks, and mingle with all the guests and not have to worry about finding the nearest seat, pacing myself and resting and sitting down.

    I would have several glasses of champagne (it is my wedding day of course) because alcohol wont make me woosy or lower my blood pressure. I wont have to worry about trying to squeeze into compression stockings for the reception at night to give me a bit more staying power. I can wear ridiculously high heels and manage to walk in them without getting joint pain or falling over whilst sober.

    Of course, I can definately manage to have a first dance with my husband, and my dad. In fact I can spend the rest of the night carving up the dance floor and not get tired or dizzy or short of breath, not one little bit.

    *SIGH* Shame my POTS wont piss off on my wedding day, but I'm still going to get married all the same damn it!


  2. Your Bob free day sounds amazing! I guess all of us have fantacies of what we would do on a Bob free day. I would drive to the mountains and go hiking. My dysautonomia crash began with a hike in the mountains. Still praying for a cure.

  3. I would get up early. Jumping out of bed. I would make a big breakfast for my family, pack a lunch and spend the day outside no matter how hot or cold it is. I'd play with my son and do what ever he wants to do. I'd be the fun mom I always wanted to be.

  4. Katrina - I wish I could make your day come true for you. Your wedding day will be wonderful though, because it is yours and Bob can never take that away. <3

  5. Michele - a day in the mountains would be lovely, and I think we all need to keep our fantasies about these things. :)

    Anon - Your day sounds lovely. Here's hoping we all get that day at some point. :)

  6. There are so many pots-free days I could plan. It has affected my life on so many levels. (no woe is me, here, I know you all have the same challenges)
    Thank you, "Rusty," for giving me the nudge to think of these, I have to think, in order to maintian that small thread of sanity I have left, that someday I will do all of these, on a daily basis, devil may care...

  7. If I could trade you one...I would give my day to you, pookie.

  8. My dream too, just one just be and do things like that. What I wouldn't give for it....your writings are wonderful Michelle, maybe you should submit some for magazines or a book?

  9. Anon - Making the plans can be part of the fun. Sometimes we all need the nudge, me included. It's easy to get overwhelmed by it all when you are sick 24/7. :)

    Raven/Missy - Thanks for your lovely comment Missy. Fingers crossed we'll all get a chance to just be for at least one day :)

  10. Elly Lou - I know you would, and that's why I love you :)

  11. Wow. What would I do? I would be me again. :) The old me who could go, go, go all day. I'd play my guitar, play the piano, sing, go for a hike, visit with friends and family... talk, talk, talk without getting out of breath or overwhelmed with sensory input.

    I would just revel in being normal... :)

  12. I would travel to Vegas and then Mykonos if I could! Miss having the freedom to travel overseas.

  13. you know what michelle, i would just walk. walk until my tootsies could take no more. i would take some lunch in a knapsack, some tea, rosy could come to, (ive never walked her without me being in the wheelchair) head through the woods, smell the earth, admire pretty wild flowers. have lunch with a view, and appreciate the scenery.


  14. Neuropoet - normal sounds lovely.

    Diana - Vegas would be brilliant. I so want to go there one day.

  15. Em - that sounds so lovely. Walking, that seems such a lifetime ago.


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