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...