Would love to have a sit on this glacier for a while...
I am a UIAGM Mountain Guide based in Verbier Switzerland. At least that is what I used to be... Back in 2000 I was at the top of my form life was taking it's course and I was at the end of my guides courses and at the very beginnings of a promising guiding career. Little did I know that a I was to fall through the trap doors of Meniere's Disease during the following summer of 2001.
Thursday, October 17, 2013
Wednesday, October 16, 2013
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...
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