Thursday, September 22, 2011

Ménière’s Part 6: Daily Life

I kept prepared for acute rotational vertigo episodes. When I went upstairs, I feared getting stranded, so I carried with me a large bowl for vomit and a pee pot—a gallon ice-cream plastic bucket—because the only toilet was on the first floor.
            I never knew the nanosecond when an episode would throw me to the floor, so I slept mostly on the living room couch for those sixteen months. I brought the five kitty litters up from the basement and put them on the back porch. Steps could be the death of me. Literally.
            During that time, I never knew when or if I would be standing upright or pitching forward to the floor. I often crawled from room to room for much of the day, pulling myself upright to crawl into bed or to stand at the kitchen counter—holding tightly to the edge.
            Because of the uncertainly, I mostly stayed in the house. But sometimes friends would take me out for a restaurant meal or for a visit at one of their homes.

A meal in my home before Ménière’s took over.

            That was always tricky because I might pitch forward at any time. My head would splatter the soup or mash the entrée. However, that happened only once. The friend with whom I was having supper got me out of the restaurant, into the car, and home to my couch. She hesitated to leave me alone, but I assured her there was nothing she could do for me. No one could stop the episodes. No one could make the swirling world in which I lived go away.
            That was one of the difficulties of the disease. When friends saw me living through an episode, they felt helpless. I didn’t want that to happen so for those sixteen months I saw few people. I became, for all intents and purposes, a recluse.
            I did talk on the phone, but often the episodes affected my speech so badly that I alarmed callers. Each day a friend and I made contact. She could immediately tell when I was having trouble because my voice was so hesitant. The brain fog, which I mentioned on Tuesday, obscured my thoughts. Because of that, I couldn’t track ideas or sentences. I’d stutter. Stammer. Stumble for words.
            Sometimes I felt the need to sit at the computer and research. I always regretted my decision, however, because always I’d suddenly pitch forward. Only a total act of will permitted me to jerk myself to the left, so as not to shatter the monitor. I’d continue downward, often grazing the corner of the desk. I’d thud to the floor. There I’d vomit and keen until the episode subsided.
            Of course, if the episode lasted several hours, I’d ultimately crawl from the office to the living-room couch. Lying down and fixing my gaze on the top right-hand corner of the ceiling always helped.
            Some people, I later learned, call acute rotational vertigo episodes attacks. That is understandable. I remember feeling as if an evil spirit had shoved me out of bed during that nighttime episode in May 2006. Suddenly I saw clearly why our ancestors thought demons possessed those who suffered seizures.
            Episode or demonic attack, the result is the same: panic.

Postscript: In your comments on Tuesday's posting, many of you have expressed concern about my life today. Did all this get better? If not, how do I handle it? Saturday’s posting will reassure you that all is well. Future postings in the next few months will detail the operation that gave my life back to me.


  1. I had no knowledge of this disease before now. How incapacitating and scary it must be.

  2. Wow! What an awful thing to happen to you, to anybody! I've had vertigo before, but nothing like this. I am so glad you were able to be helped, nobody could live very long in a situation like you have described.

  3. To have to live through something such as this for a day or two would be absolutely awful. To have had to live with it for sixteen months...unimaginable! I am so relieved that you were eventually able to receive effective medical intervention. xoxo

  4. My Goodness me, you really have had your fair share of disasters in your life.
    I am glad that you have already said that life is relatively easy again. I'd find it hard to continue reading about your suffering otherwise.

  5. I know that we all do what we have to do, but I'm still amazed that you lived with this problem (for lack of a better word) for so many years & still became the wonderful person you are. So many people--& I include myself--would have become bitter.

  6. All of those things we come to trust in our lives - our bodies, our ability to communicate, the fact that we will have an intention and be able to follow through on it - came crashing in on you. Such an absolute crisis of faith! I am amazed at your ability to write about it so clearly and thank you for sharing your story.

  7. What a nightmare, Dee! I had no idea how truly awful this condition can be. I'll look forward to your Saturday post as I'm guessing it will assure us that you're better!

  8. Thank goodness it was only 16 months. Probably the longest months of your life, but only 16. Thank God that there was a surgery that could bring you out of this horrible day to day existence. I was so glad to hear that you are doing okay today! :):)

    Your story really makes me think about the people who live with seizures all their lives. I remember working with a 2 year old who all her short life had almost constant small seizures and occasional grand mal seizures. She was always drained--totally exhausted. She'd never learned to walk, feed herself, dress herself...none of those things were possible with never having balance for any length of time and being too weak to lift your arm. She had trouble even being fed by someone else. I had to feed her tiny, tiny spoonfuls for fear she'd seize and choke. Had forgotten all about her, to be honest. I wonder what happened to her? Is she is still alive? Did they find a way to stop the seizures?

    It's amazing what human beings can survive. It was soul-stirring to me that this little girl would still smile as you spoke softly to her and tenderly brushed the hair from her eyes.

  9. I have returned to read the comments on this post, as I always look forward to hearing the opinions and reactions of your wonderful followers. They have not disappointed (they never do!). I especially enjoyed reading Rita's shared story of the little girl who lived with daily seizures. Things like this seem so incredibly unfair, when others seem to sail through life without any obvious obstacles to bear. Then, there are others such as yourself and Melynda, who have faced huge challenges and, yet you continue to shine forth in spite of these, rising so far above so many in this world who, despite their favoured circumstances, choose to live miserable lives of their own making, complaining and moaning about everything. I trust you will have a lovely weekend, Dee! I am planning to spend much of mine working in the garden and spending time with the dogs. Big hug xoxo

  10. So terrifying. I can't imagine having to deal with that. How sad to not be able to do the things you wanted to do.

  11. Thank you, so much for stopping at my blog. I don't have the time at the present, but I want to go back and read all your posts. I've heard the name of the disease before, but never knew exactly what it was. I'm so looking forward to hearing how you dealt with this.
    I noticed the tablecloth in the picture. It looks like some my mother used to crochet. Is this hand crocheted?
    Thank you again and I'll see you soon.
    Love and peace,

  12. How awful what you went through and the fact that you had to become a recluse to soothe your friends as well.
    So GLAD you made it through!

  13. I can imagine how extremely difficult your situations can be. But as I can see, you are a survivor. And your experiences teach us valuable lessons. Thanks for sharing. Looking forward to the next episode.