National Health Blog Post Month: It begins.

In a moment of madness I have decided to sign up to WegoHealth's National Health Blog Post Month (I blame you, brain fog!), whereby I blog about my health every day for the month of November. As I sit here in a mild panic I wonder how I'll manage a blog a day. Given that I am lucky if I have the strength to brush my hair 30 days in a row it could be a slight challenge. But hey, I'm sure if I play Eye of the Tiger on loop and watch enough Rocky montages I'll be psyched up and ready to tap away at the keyboard day after day. If you happen to log in one day and are faced with a page of crazy in the form of line after line of "Adrian!", at least you'll know why.

Should I add that today started with me opening my laptop, spilling coffee down my top, whacking my leg on the coffee table as I jumped/flailed from the hot coffee running down my front, whilst simultaneously watching my laptop go flying and landing on two startled, and now hysterical, Great Danes? I'm sure this bodes well for the next 29 days.

Day 1 “Why I write about my health”

I have been sitting here for a while trying to clarify why I write about my health. A fellow blogger on another blogging forum asked me if I had an "elevator pitch". Essentially this is a tag line that sums up the blog quickly; my style, my topic, my reason for blogging, in 30 seconds or less. I am yet to  work that one out. Every time I try to sort through my reasons for blogging, I realise my thoughts on the matter are as disorganised as my bedroom closet, complete with dust bunnies and piles of clothes that I might just fit into again one day (plus my 1980's pastel tapestry vest which I'm sure will come back in fashion soon. Shut up. Yes it will!).

It's not an easy concept to articulate as it really isn't a static or one dimensional motivation. Why I started blogging about my health back in 2009 and why I blog now are very different. Although my earlier reasons still influence why I blog today. In reality why I blog about my health today may be very different to why I blog about it tomorrow. My reasons are influenced by my experiences with the medical field, how my symptoms present on any particular day, how they in turn influence my day, and how I react to these experiences at an emotional level. Add in that as my audience has grown, readers comments and the themes within them, also influence why I write, and its all clear as mud, right?

(I swear my brain may now resembles the chaos that is my teenage sons' bedrooms. 
Be thankful you can't appreciate the teenage boy funk that accompanies this Petri dish/bedroom)

I want to say I started blogging about my health for some altruistic, awareness-raising reason, but the truth is I was scared, alone and dealing with an illness I had never heard of and couldn't find much in the way of information about. I needed a challenge. A way of regaining control, and in turn regaining me. Writing had always been something I loved, so it seemed the logical choice.

Blogging about my health in those early days was about rediscovering and taking ownership, of my voice and my experience. When it comes down to it, if you don't write your story no one else will. And there is no one who knows your story as well as you. Being a patient and being ill can be very disempowering. A paternalistic medical system and a body that seems out of control can rob you of your sense of self. Sometimes, it can be down right scary. But every word I wrote in those early days was another step back on the road to reclaiming me. The very act of sharing my voice with the world was equal parts empowering and pee-in-your-pants scary. Some of those thoughts that go through your mind when you are alone in the dark at 3 am, make you feel like a crazy person. But when you share them you suddenly find that there are others out there having the exact same thoughts and they become far less scary. It's then that you realise that you are in fact a rather normal person living a rather abnormal life.

Blogging for me is a means of exorcising the crazy and the stress of living with a challenging chronic illness. When it all gets too much I start typing. I bang away at the keyboard for an hour or so to get it all out. At this point it's more akin to word salad than any recognisable form of prose. But as I sit down, scull a mug or three of coffee, and edit what I have written, I am also working through whatever the issue is. I collate my thoughts, give them order, and it all begins to make sense. By the time I finally push publish I am usually in a much better place than I was when I began. Whether it's deciphering a cryptic or frustrating medical appointment, dealing with bad news or wrapping my head around having to wear granny stockings when I am not yet 40, the blogging process works much in the way of a therapist, complete with me sitting on a couch.

I know now that in many ways my blog can be a voice for others. Discussing life with Dysautonomia with honesty and candour takes away the veil that makes us all feel alone, and often scared. To admit fears, discuss the emotional consequences of living with chronic illness, or simply talk about the less savoury aspects of the disorder, takes away the fear element and normalises the experience. Loneliness and isolation are common when dealing with chronic illness. Really they are common in a society that dictates always being positive and never admitting fear or hardship. The saying that a problem shared is a problem halved, is so true. Sometimes to hear that even one person somewhere in the world feels the same way as you can remove a huge weight off your shoulders. For this reason sharing my health with others helps to chip away at the stigma and the fear associated with a Dysautonomia diagnosis.

I have always had a weird sense of humour and I know this influences how I write about and deal with Dysautonomia. Sarcasm works well for me and I can usually find a way to laugh no matter how bad things get. If there is a chance to make fun of the absurd world I now inhabit, I take it. I am sad and even angry at times, but for the most part I poke fun at my life and my continually breaking body. Sharing that with others and letting them know it's okay to laugh (or get photographed as a zombie or dress up your puke bags with pink feather boas or make impractical sparkly red heels), again takes away some of the stress. So often people tell us how we should react to being ill. Or we become overwhelmed with the very real doom and gloom of our situation. A little crazy and a good laugh can be priceless. Sometimes knowing that someone else is laughing gives you the permission to also have a laugh.

Over time the blog has allowed me to raise awareness and advocate for others with Dysautonomia. This is a really rewarding and unexpected outcome. When I started I never conceived that I could have that role again. In my working days I would advocate for individual patients, be it in medicolegal arenas or simply ensuring they could access the post hospital care they needed. Now I can advocate for a whole disorder and with that, not just individual patients but their families and whole patient communities around the world. This is the true power of social media and blogging. This inspires me to continue blogging about not only my personal health, but the disorders I live with and the challenges we face at both a personal, organisational and societal level.

So there you go. That's just a few of the reasons why I blog about my health. Be it, raising awareness, the cathartic and personally empowering effect, or helping others on the journey, these are just some of the many reasons I choose to share my experiences.

Okay, I may need your spare spoons and/or a kick up the arse to keep me blogging each day. I'm already ready for a week long nanna nap after just one post! Time to start singing...

Risin' up, back on the street
Did my time, took my chances
Went the distance
Now I'm back on my feet
Just a man and his will to survive....

Cheers
Michelle :)