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!! 

Anybody could get this disease

The symptoms are debilitating because they are severe and unpredictable.

“You don’t know when it’s going to come on,” Ishiyama said. “When you get this you really cannot work. It’s really a bad situation.” Most people who have Meniere’s don’t know what to do about it 

This is taken from the following article:

http://www.theacorn.com/news/2013-09-19/Health_%28and%29_Wellness/How_vertigo_was_treated_with_surgery.html

Vestibular disorders awareness week!!

Just spreading the word!!

http://vestibular.org/news/06-04-2013/balance-awareness-week-2013

Pierre Avoi Video

Just made a video today up at the Pierre Avoi. Looking forward to you reactions!!

It will be up on you tube and here soon.

Don't forget... we launch the fundraiser with Start Some Good soon... next few days!!

A mountain guide with Meniere's Disease

Meniere's disease has quashed all my dreams of ever being a full time Mountain Guide. After several years of remissions spotted with vertigo episodes I was finally officially diagnosed around about 2006. Dr's told me to go home and learn to live with it. Since then, I have not dared tie in with a client ever, I've concentrated on winter guiding on skis where I do not need to worry about getting dizzy and pulling a client off the side of the mountain.

Since the summer of 2012 I took the decision to contact disability insurance and not work for the following winter. This has been one of the hardest times in my life. First few months I felt liberated, knowing that the hardest decision had been made. I was looking into starting a Meniere's Association for Switzerland.

Then came Meniere's Disease in the spring of 2013. I suffered with 3-4 months of vertigo. back to back days of feeling dizzy, morning, noon, and night. My hopes of starting an association vanished, but not without leaving me with deep feelings of inability.

I now live from day to day, not knowing whether tomorrow will be a good day or a bad day with Meniere's Disease.

I would now like to raise money for research!!