Thursday, 9 January 2014

Today I went to a cafe.





































Today I went to a cafe.

"And.......?" I hear you say.

It may not seem a big deal to most. For many it is a common, or even daily event. But not for me. I can go months without heading to a cafe. Or anywhere really. Well anywhere other than needed medical appointments, which, when you think about it, are hardly a source of excitement.

I have tried many different ideas to help me get out more. Compression stockings. Extra medications. Even a wheelchair, so I at least take the exhaustion and symptom exacerbation that comes with being upright and walking, out of the equation. But my overall level of decreptitude frequently means that heading to a cafe and all the logistical issues that come with that outing (showering, getting dressed, travelling, finding somewhere with air-conditioning, a place I can put my feet up,....) , are just beyond me. I have a finite level of energy reserves, and of late they have been on a steady decline.

"So how did this miraculous outing happen?" I hear you ask.

The answer:

One litre of salty water shoved in my vein. That's it. That's all. No more. No less. No tricks. No secrets. No magical talismans.

I have no idea why this is so effective. There are multiple theories. But in truth I don't care. It works and that's enough for me.

I drink my 2-3litres of fluids each day. I increased my salt intake. I use both Florinef and DDAVP, both medications designed to make my body hold onto fluids rather than peeing them out.

And yet....

I drink. And then I pee. Often more than I originally took in (and yes I have spent a day collecting and measuring my pee, doesn't everyone?).

But with slow IV administration it stays in. I'm not running to the loo every 3 seconds like I am with oral fluids. And because it stays in, it works.

My headache that has been continuous since Christmas day is gone. And whilst I am tired (I arrived at the hospital at 9:30am and didn't leave until 3pm) that general level of malaise that I have every single day is gone or at least greatly decreased. Tired without that ever present level of indefinable unwellness is a whole different ball game. I have colour in my cheeks and feel mentally brighter. I am still tired but feel better, and more importantly more functional, than I have in months.

And when my eldest said, "do you want to go for a coffee, Mum?"

I actually said, "Yes".

I don't care whether IV Saline remains a controversial therapy in some medical circles.

I don't need their approval.

I do know I have a cardiologist, a GP and a local Day Procedure Unit who were willing to give it a go.

And today I sat in a cafe with my son and had a coffee.

And that to me is a successful treatment.

Cheers
Michelle :)



Don't forget to check out my Clicking my Heels for Dysautonomia fundraising for The Greg Page Fund for Orthostatic Intolerance, and the Baker IDI. Nearly at $1,500 already!

3 comments:

  1. That's wonderful. I'm so pleased this treatment helps you.

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    Replies
    1. Thanks Mary :) Hard to get a doctor to agree to do it here, but most find it really helps.

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  2. I am so happy for you!!! To find something that WORKS, that actually improves your feeling of well-being, well… it almost brings tears to my eyes. I have yet to find that magic bean, but I'm super happy that you found something that enabled you to have a little of the everyday joy that you're entitled to. :)

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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