Tuesday 22 October 2013

Stephanie: From challenge to hope and giving back. Dysautonomia Awareness Month

Today's guest poster is Stephanie. Stephanie is a woman after my own heart, having gone into counselling as a profession. I love that her journey to diagnosis has led her to a career helping others who are negotiating the same, often confronting and confusing, path. Lets face it we all need help processing living with this disorder and who better to understand than someone who has tread that path themselves. Go Stephanie. 

Well I suppose the best place to start is with my name. I'm Stephanie I'm 26 and from Melbourne. I have had Dysautonomia/POTS and Fibromyalgia for 10 years now but only diagnosed for 5 years. I can't believe it has been that long but some days it feels as though I have never lived any other way then chronically ill.

The theory is my condition developed from when I was 16 and seriously ill with viral meningitis. I spent weeks coping with the virus and was fully expected to recover without any flaws. Boy was I wrong!!!! It took my mother and I several weeks after my virus to realise that something was seriously not right. I wasn't merely exhausted from minor activities I had begun to collapse at a moments notice with palpitations, sweating, abnormal temperatures, pain, migraines and more, as you can all attest to.

Our first port of call was a man that dealt with chronic fatigue syndrome (CFS). I remember being frightened, skeptical and in an enormous amount of denial. I had never meet such a proactive doctor before and was thus convinced that my body had undergone some major trauma when fighting the meningitis. I was fully trusting and was happy to do what he suggested, as I didn't know any better. After some time I was observing that my condition wasn't moving in the right direction. I was not only collapsing but was experiencing seizures as well. I needed a new doctor. So as I am sure some of you have gone through the same path, with the ever ongoing and stressful search for a medical professional to listen, acknowledge and understand. My search was an exhausting one but I am pleased to say that I am content where I am at this point.

My diagnoses was quick, my doctor went through my history and did some basic tests and boom I was hit with the news that I was suffering from a condition called Dysautonomia and POTS. The moment was bitter sweet and a huge mixture of emotions. I was relieved, angry, sad, confused and most of all I was tired. Tired of my body and at this point my mind wasn't in a very great place either. I would probably say my mental state has been one of the biggest hurdles with this condition. It takes constant checking and realising that I am who I am and don't need to justify myself or my condition. Looking back I am not surprised at my reaction as I feel many of us have experienced similar.

I still suffer from the many symptoms that are associated with this condition and struggle to find a viable treatment so am working on Midodrine and a symptom based treatment approach for the moment along with my doctor. After 10 years and still trying to find my feet I have to say my mind set is 90% of the time positive and pulls me through, amongst other things. My spiritual and buddhist background also supports me in being content with my life and working to help and support others. So I put myself through a qualification in counselling and am now passionate about supporting our community of people living with a chronic illness physically, emotionally, psychologically and spiritually. My hope is that the future brings us closer together so we can shine even amidst our challenges.


For those unfamiliar, a short explanation of Dysautonomia can be found here.
One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.
Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.

I love Katie Noonan, her voice is just liquid beauty. And this song fits Stephanie's post as we all need to breathe in now so we can shine. 

1 comment:

  1. Stephanie congratulations on taking on this sneaky condition with such determination and positivity for the future. Is is sadly true that most of us take years of medical visits before we finally find out what is wrong with us, and could all probably write reams on the medical 'professionals' who should re-read the Hyppocratic Oath! I am an aspiring Buddhist, and feel it has helped me to take responsibility for my life and illness, instead of waiting for a 'higher being' to give me the answer - no offence meant to any readers of different beliefs, it's just what helps me personally. I wish you much success in your career and life overall. Kind regards


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

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