Things that you didn't think about

I can hear some people now.
"Hey, I go to amusement parks to feel that way, and you get it for free!"
or
"What are you complaining about, people take drugs to feel what you get to feel for free?!?"
(For the record, I have been told both of these, in these terms!)

While you can do things to feel these sensations for a time, the feelings quickly fade away. For me, they do NOT fade away, and I am stuck in that state. Spending a prolonged time in this state leads to another symptom of Ménière's disease that is often harder for people to grasp, brain fog.

In short, when I am having significant balance issues, I can seem rather stupid, as I am using my conscious brain to monitor things that you probably scarcely think about! With my version of brain fog, my conscious brain is tied up doing what your body does without using your conscious brain. On a bad day, as I try to do something, I look out, "That wall looks perpendicular to the floor. Am I parallel to that wall?" Then, I need to adjust my stance as need be, to leave myself standing reasonably close to vertical. Then I can attempt to do something, but a few seconds later, it starts over, "Am I positioned parallel to the wall?" Even while standing stationary, as I sway and lean quite a bit, at times, I cannot go 2 seconds without having to check for position. As you may be able to imagine, this can really cut into how much that I can think about when I am doing this much mental processing just on standing up. If I am trying to perform a complex task at this point, I want explicit, written directions. With those as a crutch, I can follow the turn by turn directions, and accomplish a task. There is another thing to add in when I am to that state. When I have been dizzy for a long period of time, there is nausea, often extreme nausea. So, think about this now, I feel as if I am going to get sick, "Ugh, my stomach!" then add back in, "There's a vertical wall, am I parallel to it?" Then there is the, "Oh, what am I supposed to be doing here?" This doesn't leave much time for actually getting things done.

Cruelly, when the vertigo is at its worst, that is also when the tinnitus tends to be at its worst as well. Tinnitus is NOT just a high pitched sound, though in many descriptions, that is all that is mentioned. Just about everyone has had a short term bout of tinnitus after a loud noise or something. But, tinnitus can occur at any frequency, not just the high frequencies that would be described as ringing. I once described an aural disturbance that is best described as feeling a big, fuzzy moth beating its wings in my ear canal. While I KNEW that there was not a moth in my ear, my hearing in that ear of outside things was almost completely muted, and there was a horrendously loud sound, and fluttering feeling, not just sound, in that ear. I have since been told that this is simply tinnitus at a different frequency. When I described this in a Ménière's disease support group, a huge percentage of the people said that they had experienced the very same sensation. With tinnitus making constant noise, my hearing is significantly reduced as well. As the frequency of the type of tinnitus that Ménière's disease sufferers can experience can be anything from very low frequency, to very high frequency, merely describing tinnitus as ringing doesn't quite cover it. As the tinnitus supplies a constant source of noise, when the tinnitus is bad, I cannot handle any more noise than need be. While I am a huge music fan most of the time, if I am having serious tinnitus issues, I will have on no extra sounds. It is too much unwanted stimulation, and also further blocks out things that I may need to hear.

When I am sick, really sick, people around me have to accommodate my problems, or my job does not get done. I work as a field service engineer, installing and repairing many different types of equipment. I am the hands and the eyes and ears for a remote engineer at a distant site.

At one point, I had asked to be taken off of the schedule, and the dispatcher had not taken me seriously, thus, I was working sick. For every minute spent in the car on the way to the site, I had to lay back in my seat, not moving, as quietly as possible for two or three minutes. This means for a job that was very close to home, requiring only a 10 minute drive, that depending on how sick I was that day, I would have to lie still for 20-30 minutes before I was able to walk in to the job site. Now, realize, that most of my jobs were a 35-60 minute drive away, and you can imagine what a huge problem that it can be.

My favorite support engineer, I warned him that I was very sick. I told him that I was deaf as a post, and dumb as a box of rocks, and would have to be given step by step directions to do a job that I had done the week before without serious intervention! The first time, he really did not understand just how much that my brain fog was getting me. After doing a few jobs that sick, I think that he was to the point that he could tell with our initial conversation of the day how he was going to have to handle me that day.

Spinning, and I'm not talking bikes, or fibercrafts...

What is this talk of spinning?

I'm talking about vestibular disorders. I have been having dizziness problems since the late 1980's, and sought answers from doctors. In 1997 I was formally diagnosed with Ménière's disease. Ménière's disease symptoms are two-fold. There is vertigo and dizziness, (frequently with associated nausea.) There is also ear fullness, hearing loss, and tinitus. The symptoms wax and wane. At times, with medication, and a controlled diet, I can feel pretty stable. Then, there are bad days, and a bad Ménière's day is a VERY bad day.

What can set me off? Foods, motions, flashing lights, people running about around me, sounds, walking on irregular surfaces, in short, on a bad day, about anything can make me sick.

Ménière's disease falls in the invisible disabilities category, in that the patient can be very ill, yet outsiders may not be aware of the problems, and therein lies a problem. Arthritis, and many respiratory and cardiac issues, and chronic fatigue also lie in the invisible disabilities category.

From what I have read, 85% of a human's balance is supposed to come from her ears. The remaining 15% is split between the eyes and the muscles, mostly the calf muscles.

As for the eyes' role in balance, watch footage of a roller coaster, and your brain knows that you are not moving, but you probably still feel the sensation of movement. This is a good example of the eyes performing vestibular functions that most healthy people can relate to. A person whose eyes are routinely taking on the lion's share of the vestibular work can feel that roller coaster sensation walking down a grocery aisle, or past a bookcase!

Well, as my inner ears are destroyed my eyes and legs have quite a bit more work to do than they were designed to do. Now, think about walking in the dark with Ménière's disease. Now, the calf muscles are suppossed to do 100% of the balance task? Oh, this is decidedly NOT good. (Is this when I mention that I am night-blind?)

As with any loss, the stages of grief come into play, especially as the symptoms fluctuate. As a reminder, I'll list the stages of grief:

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

I will freely admit that I bounce up and down through most of the list. At times, I am at a hybrid between Denial and Acceptance! How could I pull a 1 & a 5 at once, you ask? At times I do things that I KNOW are kind of dangerous for me, because I am used to being very strong, and able to do anything. I will sometimes challenge myself to do things that I really shouldn't be doing, if I followed directions. Sometimes I feel that I really need to push myself. I detest to notion of living in fear, so I fight it when I can. That stated, adults are not used to falling over, and falling over as an adult is rather disturbing! You may not think about it, but when was the last time that you fell over?