Friday, September 27, 2013

Blogging about Meniere's Disease...

I've always loved the road less traveled and the path less followed, but here I am in a situation I never believed I would find myself in.

My life is suffering terribly from a rare disease that is incurable...

After 10+ years of slow diagnosis and attempts to control and learn to live with Meniere's Disease, I find myself in a position where I feel I need to talk, tell, raise awareness and money for research... etc.

Not an easy task when the illness is there controlling my every move. The slightest moment of discomfort, change in tinnitus, change in hearing, feelings of wobbliness, grogginess or nausea can ruin an entire day or week by creating massive amounts of brain fog. The feeling of not knowing what is happening next or what is going to be possible or for how long either the discomfort or the remission will last is - to say the least - completely destabilizing.

I want to talk and tell, but I do not want to sound like I'm whining.

I'm in a situation that is virtually impossible for most people to understand. My disability is completely invisible from the outside, yet on the inside there are all sorts of conflicts happening. Loss of hearing, Tinnitus, and Vertigo are symptoms that lead to brain fog. In turn, the brain fog creates in all sorts of emotions that are equally, if not more difficult to deal with than the original symptoms themselves.

As a newbie blogger I'm finding it really hard to find ways to write about Menieres Disease and my experiences with Menieres Disease without feeling the discomforts of writers block.

I look and feel pretty normal a lot of the time.

Even in the winter!
But inside I have a monster controlling my every move and incapacitating my life.

I will do my best to blog sensibly about my situation with Menieres Disease, with the ultimate goal of someday raising a whole heap of money for research!! 

2 comments:

  1. Never knew...please keep blogging.

    Erik

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  2. Very sorry it is a very scary thing to lose balence through vertigo, not to mention the nausea and inablity to stand up. My heart really goes out to you Steven, a creul affliction for a mountain guide. Keep writing how you feel. Love Lucy

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