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

[Image: a black and white vintage image. A woman stands to lean on her kitchen bench next to a sink piled with dishes. One hand is on her chest, the other holds a tea towel and her eyes closed she looks a little overcome. source]

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 a recipe
- Lie down
- Get up and make biscuits
- Lie down
- Put biscuits in the oven
- Lie down
- Get biscuits out of the oven
- Lie down
- Run sink to wash dishes
- Lie down
- Wash dishes
- Lie down
- Put biscuits on a 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 checklists. 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 potluck as the world starts to go grey and I can't read labels. 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 won't 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 its 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. Combined with a large portion of luck.

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 your 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 a 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 :)