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)
Be thankful you can't appreciate the teenage boy funk that accompanies this Petri dish/bedroom)
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.
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....
Hooray for the NHBPM! This means that we will hear from you every day this month (this is like guaranteed daily chocolate. I like.)ReplyDelete
You are welcome to my spoons.
Can we have some spoonerisms too?
Greedy, I know.
I am humming that song now!
Mmmmm guaranteed chocolate. I've been humming it all day. I feel like I should be strutting around my house and wearing too tight jeans. :)Delete
I like your style and am glad to have come across your blog. I'd never heard of dysautonomia before. What could easily be a 'poor me' series of blogs is full of humour and courage spiced with a little well-deserved angst. I wish you all the best and look forward to the next month of daily blogs.ReplyDelete
Thanks Mary. I can do woe as me as well as the next guy, but I so find sarcasm is much more my style :)Delete
Thanks for this!ReplyDelete
Because of this, I also signed up to write every day for the month of November (Or at least try, we'll see how it goes!)
So excited to get a post from you every day... This is like Christmas!
Woo Hoo Go Alisha!!! We can only try. I've managed 2 days in a row so I'm already stoked ;)Delete
You go girl...I'm in the same boat. "Every day? WTH was I thinking?"ReplyDelete
Hehehehe I'm glad it's not just me. Feel free to use Eye on the Tiger for motivation. You just can't go wrong with that song ;)Delete
First of all, when you mentioned "Eye of the Tiger," I started imagining you brushing your hair with that song playing. Hilarious!
I am fascinated with your point about blogging as reclamation. When I blogged about my health, I didn't really realize it, but I was blogging for much the same reasons you mention. It gave me some control in my life; it helped me articulate what I experiencing and much more.
To be honest, I think the 30 days component of this campaign is a little ridiculous: can chronically ill people really participate? I cheer you on your mission, though! You can do it!! Maybe I will, too. I haven't blogged about my health in a while, let alone many consecutive posts. 30? I don't know. First I will write about Nanowrimo. I think I will participate this year and I have a lot to say about it. So it won't be 30 days, but screw that.
I don't think I realised it was an issue of reclamation at the time. Mind you I was so stressed in that period of time I wasn't really thinking much beyond an inarticulate Arghhhh! I think the creative process, whatever form it takes is healing and helps you regain balance. Most of those I know who deal reasonably well with long term illness have some form of creative outlet which really fits a lot with what I knew back in my old rehab days.Delete
I looked at the 50,000 wrds in Nanowrimo and cringed so I admire you taking that on. I've no idea if I'll make all 30 but I'm going to give it my best shot. :)
I am fascinated with your point about blogging as reclamation. I like your style and am glad to have come across your blog. I'd never heard of dysautonomia before. ThanksReplyDelete
Definitley reclamation for me and a lot of other bloggers. It's one of the easiest mediums to express your voice and really even if no one ever reads it doesn't matter, because it's yours and yo don't have to be silent.Delete
Wow..... my blog came way before my health issues, but I couldn't stop nodding reading your post - it's such a great way of dealing with the battles that we are fighting, particularly those invisible ones that you feel no one else sees or would understand. Thankyou for your courage. And the mental image of the laptop, Great Danes and the coffee made me snort my own coffee!ReplyDelete
Eye of the Tiger is such an awesome song - quite an apt anthem for us all!ReplyDelete
Just discovered your blog through the rewind. Love the humour you show while dealing with chronic illness.ReplyDelete
Every blog is different and the thing with blogging is that it is a journey and the reasons we blog change along the way. (Visiting from The Fibro)ReplyDelete
All your reasons seem like fantastic reasons to me. That's the great thing with having a blog ... you start out doing it for you and sometimes end up helping, amusing or teaching someone else in the process.ReplyDelete
These are all great reasons to blog! Thanks for Rewinding.ReplyDelete
I will prefer this blog because it has much more informative stuff. genealogy searchReplyDelete
One more question... For today (qualifier...!). Have you blogged about what foods to avoid. I am positive that I have to stay away from cream based products because it causes explosive diarrhea. Just searching for advice until I can find a doctor who specializes in dysautonomia. Thanks.ReplyDelete
OK OK... It's 3 questions and 5 is right out. Can you recommend an article that summarizes dysautonomia. I want to include it for a judge making a ruling regarding disability. Used to be able to work as a quality improvement BSN. Now a great day is showering, shaving legs and feet blow drying my hair.ReplyDelete