A Place to Ponder!

Would love to have a sit on this glacier for a while...

30 Things About My Chronic Illness

30 things about Menieres Disease and Me

The illness I live with is:
Menieres Disease

I was diagnosed with it in the year:
2005/2006 It took the Dr's 4-5 years to diagnose me officially. I was often in remission during the early years.

But I had symptoms since:
'96 is when I first noticed hearing loss. 2001 was when I had my first vertigo attack and the tinnitus started and has only fluctuated since.

The biggest adjustment I’ve had to make is: I'm still not adjusted to any of it, and i'm not sure that I ever will be seeing as the illness is constantly making its own adjustments and it is completely impossible to know for sure how good or how bad one is going to feel throughout the day. Somedays I wake up from no sleep and feel awesome and have a great day and other times I wake up from lots of good sleep and feel like hell all day.

Most people assume:
That the illness should be tolerable as long as the vertigo is kept at bay... you try TINNITUS, deafness and noise sensitivity. Not to mention the emotional setbacks of insecurity, loss of identity, isolation, depression, anger, frustration... and the feeling that no one will ever understand.

The hardest part about mornings are: Tinnitus is double as loud, and having to figure out how I feel.

My favorite medical TV show is: Grey's Anatomy – to bad they have not done a show on Menieres Disease.

A gadget I couldn’t live without is: My Iphone. Gets me out of my ear and out of my head. Along with my bikes when I feel well enough to ride, or my climbing gear when the days are good.

The hardest part about nights are: Getting sleep!!! Falling asleep when you feel good is easy, but I fear waking up feeling like hell and falling asleep when you feel like hell does not give you the rest you need.

Each day I take 20-25pills & vitamins & homeopathic meds.

Regarding alternative treatments I: could not go without my acupuncture/massage and homeopathic meds. I've also tried aromatherapy, meditation, osteopath, Tomatis treatments, coaching in 2-3 different formats, I've spent all my revenue on trying to get well.

If I had to choose between an invisible illness or visible I would choose: A visible handicap. I would also choose an accident over an illness that creeps up on you and whittles away at your existence.

Regarding working and career: My career as a full fledged International Mountain Guide is over, until I find a new one, that is looking difficult due to the unstable behavior of my illness and my emotions towards my situation. But I am still hoping to find a way. I'm also still hoping to someday get back to ski guiding where I do not have to be tied in and there is no risk of pulling a client off the mountain if I slip.

People would be surprised to know: That regardless of remission or not remission, every second of my life is dictated by Menieres Disease.

The hardest thing to accept about my new reality has been: I'm still trying to accept the fact that I have to accept. Lately I have been struggling enormously with the impact that my illness is having on the relationships I have with the people that are closest to me. My partner and my family are showing signs of frustration and anxiety due to my situation. I feel guilty for being sick, I'm not used to being the dead weight. I'm no longer going forward, I'm minimizing my existence in order to suffer less.

Something I never thought I could do with my illness that I did was: I can still do most of everything that I used to do... it just takes 3 times the motivation and causes 3 times the fatigue.

The commercials about my illness: Never seen one! There is no cure so there is nothing to sell.

Something I really miss doing since I was diagnosed is: Tying into a rope and leading a client up a mountain. I have not tied in with a client in at least 7 years. It's a risk I can not allow myself to take. I also miss not having to worry about how I am feeling physically or emotionally.

It was really hard to have to give up: I have not given up!!! Paragliding, climbing 3-4 days a week, biking whenever I want, long road trips,

A new hobby I have taken up since my diagnosis is: Beekeeping, fly fishing, and sitting on the couch feeling ill.

If I could have one day of feeling normal again I would: Sit in my garden and enjoy the view.

My illness has taught me: Never give up!!!

Want to know a secret? One thing people say that gets under my skin is: 'Be positive...' I would not be here if I had not been positive thus far.

But I love it when people: Take the time to ask.

My favorite motto, scripture, quote that gets me through tough times is: I love myself!!

When someone is diagnosed I’d like to tell them: Hang on tight... If you need a hug, call me!

Something that has surprised me about living with a chronic illness is: The psychological impacts due to all the losses and relationship changes.

The nicest thing someone did for me when I wasn’t feeling well was: Hold me!

I’m involved with Menieres Disease Awareness because: I have no choice in the matter and I'm naively hoping it will help me feel better about being ill for life.

The fact that you read this list makes me feel: Slightly less isolated...

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

Great weekend in Interlaken

Two days of riding, two more lakes crossed off the list. And a great new b&b restaurant discovery. We rode 75 km yesterday around Thunersee and 60km around Brienzersee today. Fantastic rides both of them are really worthwhile tours. The b&b is excellent will make a post about it from the computer when we get home. 

Brain Fog

This is what brain fog basically is...

A beautiful day and a little cloud of brain fog appears. Then the cloud either lets the sun shine through or it grows bigger and bigger till you can no longer even imagine that there is a mountain there.

Unfortunately one cannot choose what the brain fog cloud does. It just acts on its own. It eventually becomes a debilitating condition that affects those sick with Ménière's so that life becomes difficult to deal with at every level, every day. It is very hard for others to understand and thus the sick person keeps to themselves. Unfortunately it is very often misunderstood by the people closest.

Tour du Lac de Neuchatel

We had a great ride on Saturday. The weather kept us worried about getting wet but by the end of the ride we had not been rained on at all. Unfortunately there has been so much repairs on the roads and bike track that a lot of it felt like cyclocross. We were happy to get to the end of the biggest swiss lake that is entirely on swiss soil. there are three lakes that will be longer rides, Maggiore goes into Italy, Constance touches both Austria and a lot of Germany and the Leman that has it's southern coastline in France.

The views of the Alps from Neuchatel are mindblowing... Eiger, Monch, Jungfrau all the way across to the Mont Blanc!!

Vestibular disorders awareness week!!

Just spreading the word!!

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

Learning to raise money!

No quite as simple as it sounds!

Trying to figure out all the different sites and possibilities for fundraising through the internet.

Crowdfunding, peerfunding, squeezing pocket change out of as many people as possible to come up with a large sum of money.

It'll happen, I think, its just a matter of when how and with who!

Plug in some tinnitus and some brain fog and we're off to a screeching start.

Looking forward to swamping your inboxes... but it might not happen so quick!

Day two of bike touring!

Another fantastic day riding in the Swiss alps.

https://www.strava.com/activities/80279004

Today's warm up ;)

https://www.strava.com/activities/80020361

Getting ready for riding around the lakes of Switzerland. 

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!!

Start Some Good - Project accepted!!

Stay tuned for more info on my 'Startsomegood' Project.

Start some good!!

I just applied for a fundraising program with Start Some Good.... Yahoo!!

Money for Meniere's research

I have very little experience with personal fund raising and would love any input from those of you that do.

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!!