Wednesday, 7 August 2013

Translating symptoms into the reality of day-to-day life.


A couple of months ago I put this status update up on the blog's Facebook page...

"Cooking biscuits with Dysautonomia:

- Decide to make biscuits
- Lie down
- Get up and find recipe
- Lie down
- Get up and make biscuits
- Lie down
- Put biscuits in oven
- Lie down
- Get biscuits out of oven
- Lie down
- Run sink to wash dishes
- Lie down
- Wash dishes
- Lie down
- Put biscuits on rack to cool
- Lie down
- Go to eat biscuits and hit with nausea
- Lie down
- Be happy that although you currently can't eat them, you did in fact make biscuits.
- Lie down.

Time elapsed: 1 1/2 hrs.
Energy levels expended: 3 days worth
Happiness level: rather pleased with self."


....and it went off. My moment of frustration/triumph was familiar to so many.

You see it's easy to sum up Dysautonomia as a bunch of symptoms: Low/high or fluctuating blood pressure. Bradycardia or tachycardia. Nausea, vomiting, constipation, diarrhoea. Profuse sweating, no sweating. Syncope, near-syncope. The list goes on and on. 

But what does it all mean? 

Our doctors concentrate on the numbers, the blood work and check lists. But that is only part of the equation. For those of us living with Dysautonomia, it is not the symptoms that matter so much, but more how they impact on our day-to-day life. I can give you a list of numbers, eg bp 90/80 and hr 42. Yes the bp and heart rate are low and the pulse pressure to narrow. But that alone doesn't tell the story. The real story is that, like in the example above, the normal aspects of life often become Herculean acts thanks to those numbers.

Let me explain.

I wanted to make biscuits. A normal task. A simple task. But those numbers above mean that making biscuits becomes a lesson in perseverance and determination. Those numbers mean that the longer I stand at my kitchen bench the more the blood pools in my feet. It means I start to get dizzy and the world becomes grey. The hand holding the knife to cut up the walnuts starts to shake. Weakness infuses my body and I either sit on the floor or fall over. It means that holding that knife becomes a real danger as it keeps slipping from my weak and now sausage like fingers. It means picking up the ingredients off the bench will involve dropping, spills and knocking things over. It means when I reach up to grab the flour, the raising up of my arms compresses the blood vessels leading to my brain further limiting the blood supply to my brain. It means that finding the flour becomes a bit of a pot luck as the world starts to go grey and I can't read lables. It means that I can't hold onto the flour and I risk dropping it on my head or my feet. It means once more I need to lie or sit down because my legs wont hold me up. Or I accidentally lean against the hot oven as my body begins to sway. It means I am too weak to hold the bowl to stir the mix. Or that I forget ingredients as brain fog sets in. That I am so unsteady that I can't safely open the oven, hold the tray or put it in. It means when the buzzer goes off I must ask for help to get those hard earned biscuits out of the oven. It means if there is no one around I risk burns as weakness combines, with the overwhelming heat and my inability to judge the distance between my hand and shelf in the oven. It means my body, exhausted by it's efforts, will respond with nausea and a need to run to the loo, often mixed with almost passing out. It means I can't eat the biscuits I have worked so hard to create. It means I'll need to rest after. Sometimes for hours. Whilst the biscuits sit there mocking me. 

So often we are told it is just an issue with blood pressure or heart rate. We are told to simply "push through". But the reality is very different. The real world consequences of just a blood pressure or heart rate problem are much greater.

It may seem that we are doing little during the day when we say we got up, showered, cooked a meal, and rested. But each of those tasks can take an enormous amount of energy. Each of those tasks is often only completed through sheer stubbornness and determination. 

Dysautonomia is not just a collection of symptoms. It is not being able to make a meal for nausea. It is not being able to go out for a spontaneous coffee. It is not being able to sit through a movie at the cinema. It is not being able to shop for groceries. It is not being able to attend school events. It is not being able to vacuum your house. It is not being able to wash you hair. Or simply not being able to just decide to make a batch of biscuits.

But those times when you do manage one of those tasks, you celebrate as only someone with chronic illness can. Because you know just what it took to get there.

And a plate of hard won biscuits is, after all, a sweet sweet prize. 

Cheers
Michelle :)

8 comments:

  1. Wait, cookies? So you are you getting to run to the post office to air mail them to Florida? And yes I'm sure a TON of people could go on forever about all the little ins and outs of chronic illness but the big thing is You Made Cookies! COOKIES! Holy BLEEP!

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    1. All is well with the world when you a plate of fresh biscuits on your bench. :)

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  2. you capture the reality as always, michelle. i am having my own celebration because i 'ACTUALLY WENT OUT' yesterday. i saw bits of my town i haven't seen for years. and watched seagulls squabble, and drank a coffee with that clever froth on top that they do now.
    and i breathed different air, and i saw people just going about their lives. days and weeks of treasure in there to remember.

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    1. So glad you got to go out Bea. Just being part of the world, so lovely. xx

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  3. As always, your blog brings me some perspective. Thank you. I'm sorry you didn't get to enjoy those cookies after all that work.

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    1. Thanks Mary. I did get a few a day later so I made up for all the ones I missed out on that day. :)

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  4. Sometimes i'm mad enough to tackle a family sunday lunch, usually starting on friday, only one of the people I love most ever offers to help, but he sees every day what the 'simple tasks' do to me, and as with all families, everyone disappears when there's washing up to do, even though it just involves stacking the dishwasher! Still I suppose it keeps me normal! Ha ;>))
    Ps were you making macarons? Yum x

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    1. I still try and do the Sunday roast, but it's hard some weeks. Luckily I have trained the boys to do it too so they can make it. Ah the battle of the dishwasher. We often have the issue that they will pack it, with much grumbling, but then it never gets turned on so in the morning it's all pretty foul. Ugh.

      Not macarons, just good old choc chip, oat, and walnut biscuits. :)

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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