Participant Page: Itsy Bitsy Dizzy
This campaign is important to me because I want more medical professionals to be aware of this disorder and give faster diagnosis to sufferers. I want the public to be aware of this disorder so when someone tries to explain the condition, others will not think you are not sick and just trying to get attention. No I do not have a broken leg - a visual injury - I have an invisible disorder. If I told you I had a torn rotor-cup or cancer, would you think there was nothing wrong with me? You cannot see those injuries and illnesses either.
Following right ear surgery on Sept 25, 2006, I was severely dizzy and unbalanced. I was told before surgery this could happen and it would last 5-7 days, each day getting better. Four weeks later, I was unable to stand by myself, let alone try to walk. I had severe vertigo. The room spun violently and things in the room were rocking back and forth. I felt like I was trying to stand up in a row boat that was in the middle of the ocean during a tsunami while looking through a kaleidoscope. I could do nothing for myself. I needed help walking to the bathroom, most of the time being carried. I could not stand in the shower, so I took baths, which I could not do by myself, I had to have someone wash me. I could not set at the table to eat meals. My coordination was affected also, many meals I was fed. My doctor ran tests and I was diagnosed with vestibular neuritis and cervicogenic dizziness. My semi-circular canal is damaged also, meaning permanent balance/dizzy issues. I also suffer from mal de debarquement and otosclerosis. Due to the damage to y semi-circular canal, I experience symptoms of every know vestibular disorder, at least one symptom daily, sometimes many symptoms. My doctor set up an appointment for me with a balance therapist. I thank God my doctor recognized the symptoms as a vestibular condition. Many that suffer go years without a proper diagnosis. Therapy has helped me regain independence. It was 4 months before I could wash my hair, comb my hair and brush my teeth without vomiting. I was off work for almost 6 months, I am now working full time. There are many things I can no longer do, (ride the motorcycle, snowmobile, water ski, hike the mountains, carry a newborn grandchild), but I have learned to enjoy many other things. I have learned to modify my activities to participate in life. I walk on the beach with my walking poles, I ride my bicycle with training wheels, I refuse to just exists in life due to my vestibular condition - I will live life. I have learned to not care what others think when they see me and think I am drunk. They cannot see things jumping and moving around when they look at them, I sometimes do. They do not get dizzy and loose their balance when startled by a car horn or a quick turn of their head or the slamming of brakes when riding in a car. Others do not ride in a car and after 8 hours of travel they cannot walk, think clearly or function properly. They do not feel as if they are still moving when the car has stopped. Everything in my life has been affected by this disorder. My concentration is horrible, my memory even worse. I never dreamed at the age of 43 I would need therapy to learn to walk again. Therapy has trained my brain that its main function is to keep me balanced, upright and mobile. Due to this, I frequently suffer brain stress headaches. I suffer chronic fatigue. Keeping me balanced uses so much brain power, I need to drink more than 8 glasses of water a day because my brain easily dehydrates. Visual stimulation, loud noises and bright light can aggravate my symptoms. Having a vestibular disorder is like having some brain damage. When my symptoms are at their worst, I experience stroke symptoms - my speech is slurred, I can be confused and disoriented, my coordination is bad, my balance is so bad I need to hold on to things to walk and stand and my vision can be blurry.
Please support the Dizzy Dash and the Vestibular Disorder Association, those of us who suffer thank you.