Life with Meniere’s…

My hearing loss was a sneaky bastard. Tantalizingly slow and subtle for the first 5 years but when tallied up after 2 decades has been significant. The pandemic has been a good reminder of how out of touch I am in my silent world. For the hearing impaired, having the entire population wearing masks has made life almost intolerable. I never realized how much I depend on reading someone’s lips until everyone’s mouth is covered. My life really is an oxymoron. I’ve lost a profound amount of hearing since 1998, so it’s safe to assume my world should be a quiet vacuum. Nothing could be further from the truth.

Craft project with Graham a few years ago. Don’t cover up that mouth!

That’s how I first realized something was going on. I had no idea I was suffering from a hearing loss. I noticed my head was never quiet anymore but couldn’t distinguish why. It started at night, in the dark, lying in bed when I couldn’t get my head to hush. No, not the regular shit that bothers you at night. You know like a big tax bill looming, one of the kids going through something tough, or I was worried about my parents. This was different. There were real noises actually inside my head. A chain saw, a dentist drill, a huge electrical wire that has snapped to the ground and pings loudly every few seconds, the sound of a TV station after they’ve gone off the air (at midnight, yes this might date me somewhat) with just that snowy sound, or the sound of that big rush of air when you walk through a tunnel at a football stadium.

This is what every TV station looked like after midnight in the 50’s & 60’s…

Plus I developed this creepy, abnormal fear of the dark. I knew our house like the back of my hand and had no problem going through the halls, up and down the stairs, or to the bathroom without the lights on. Not anymore. Didn’t think a thing about it as I was meandered my way through Meijer one day and bought a half dozen night lights, sticking them in outlets all over the house. I didn’t realize these were all clues something odd was going on. With me.

Come on, I was cute here right?

Hubs was on the ball. He noticed something was off. (Well I was giving off some pretty spectacular clues). “Turn the sound up on the TV, I didn’t hear that.” Or “how can our 16 theatre complex get completely remodeled and not update their lousy sound system?” “Nothing’s wrong with the theater’s sound Denise. Maybe you ought to go to Doc Anderson and see if everything’s ok. You’re acting weird. And what’s up with the night lights all over the house?” (These clues were not very subtle).

Muskegon’s movie complex. They actually had good headphones for me to use…

Well Doc Anderson checked me out and sent me to an eye, ear, nose, throat guy who diagnosed me with a hearing loss in my left ear. But he wanted me to see a doctor in Grand Rapids who specialized just in ears. Dr. Daniels’ first suggestion to combat all the noise in my head was to introduce white noise at night. Something I could hear so the screaming in my head was less noticeable as I was trying to fall asleep. Quite simple really, run a fan every night. It did help a lot in the beginning. (Several years later however, as my ability to hear was leaving faster than Jeff Gordon could take a lap at Michigan International Speedway, I could no longer hear the fan. But the Hubs was so used to the noise he couldn’t sleep without it.) Oh the irony. The noises got louder as I lost more hearing. (Part of this was my brain compensating for not being able to differentiate some sounds, so it just made up new sounds for me to deal with. Thanks brain).

The fan I no longer hear and Hubs can’t sleep without…

Just as I was adjusting to wearing a hearing aid to help hearing in my left ear (2 years), the hearing in my right ear took a nose dive. Oh come on! Let the pity party begin. I was in a major slump until I was driving home one December day about 5:30. The sun was setting and the western sky over Lake Michigan was cotton candy pink with some accompanying clouds and sun peaking through. It just took my breath away. For the first time I thought, thanks God that it’s my ears, not my eyes that are failing. That was the turning point right there.

But my head issues weren’t done revealing themselves just yet. I was about 5 years into my walking habit. Walking west for a little more than a mile, turning around, walking 2 miles east, another turnaround for a mile, down my steep hill and home. Well this day I had just passed Johnson’s point (almost a mile away) overlooking Muskegon Lake, swinging my arms with nice, long, easy strides. A flock of seagulls were above my head, heading to the big Lake, not even a mile away by air (for this landlubber it was another 2 miles, most of it without the aid of sidewalks). I continued my fairly fast clip, looking up, following the birds flight plan for a few seconds. When I finally tore my gaze away I found myself far off the beaten path. I was yards off the sidewalk. How the heck did that happen?

Cordless headphones, the only way I can hear the TV…

Dr. Daniel’s had a pretty good idea what was causing this improper addendum to my hearing loss. I remember the exact day because I looked so stinking cute. (This has happened twice in my life so it was duly noted, never again to be repeated. Once was a school picture when I was 7. The other was that day in the doctor’s office. I was quite slim and wearing a cute denim overall). Doc had me stand in the middle of an exam room with my eyes closed, arms stretched out in front of me and walk/step in place. After 40 steps I had made a complete circle. What? Then he had me lay down flat on a table on my back which had really become difficult for me in the preceding months. If I didn’t have a pillow under my head, I immediately got dizzy and nauseous. After those disturbing feelings stopped he moved me until my head was completely off the table but he was holding my head in his hands. Slowly he dropped my head back a few inches with my eyes open. My eye balls started fluttering like the old digital clocks, except at the warp speed of a machine gun. So nauseating. Ick. Gently he sat me back up and held my shoulders steady until I stopped swaying.

Grateful for such beautiful sunsets…

“You have Meniere’s Syndrome, which accounts for some of the constant racket in your head. Meniere’s causes a fluctuation of fluid in your inner ear which can cause dizziness, vertigo, balance and being unsteady on your feet. You may go weeks or months without symptoms, then without warning the side effects can hit you pretty hard, making you nauseous and very difficult to distinguish what other people are saying. It’s chronic. Ease up on your salt intake.” (If I eased up on salt any more I would be down to individual grains per day) “Plus your last hearing test has taken a huge dip. In a few years you might fit the criteria for a cochlear ear implant. For now I think we should give up the hearing aid in your left ear, because your hearing is down considerably. The aid just amplifies all the noise you already hear. Let’s concentrate on getting the best hearing aid for your right ear which is still above 70% in understanding what people are saying to you.”

Blown away.

Depressed and alone.

I hate this.

Eventually Neese got her “groove” back but it took awhile. The more hearing I lost, the smaller my world became. Rooms full of people made me turn around and walk in the other direction. Malls, restaurants and large crowds were avoided. I couldn’t hear, understand or participate anymore. Better and easier to just stay home.

Happy I can read to great granddaughter Jovi…

I’ve noticed a few changes with Meniere’s. My balance is definitely worse in the last couple years. Some of it probably aggravated by my 2 knees, both without much cartilage. Since my replacement in 2019 and fall 5 months later, I’ve accepted safety over pride and adopted a walking stick in the mornings. I love the stick and know there’s no way I can walk without it, but I feel like my steps are lopsided, hesitant, jerky and horribly uneven. Not smooth at all. I can imagine what folks driving past me must think-freaking old broad is drunk or higher than a kite at 8 am. Already had some edibles. Yikes.

Life with Meniere’s as I scurry towards my 70th birthday means:

* Never standing up and trying to walk immediately. I need to pause and get my balance before moving anywhere.

* Never going higher than the second step on a footstool. After looking up while I’m decorating the Christmas tree I know I’ll be dizzy and my balance will be way off for at least 2 days.

* Avoid laying my head on a flat surface.

* Skimming my fingers along walls, railings, furniture when moving through the house.

* Asking Hubs to hang onto me on the step stool when I wash windows outside.

* Coming to a complete stop at all streets I need to cross. Slowly turning my head both ways for oncoming traffic.

* Avoid walking on uneven surfaces at all costs.

But 90% of my life is good. These are minor inconveniences which annoy me, but don’t really cause much hardship in everyday living. If I’m careful and vigilant about what and how I’m doing something. Knowing and respecting my limitations, which has been an eye opener. Still I hate the way I think I look when I walk (which doesn’t make any sense). Why should I care?

Words to live by Neese…

I need to adopt, accept and abide by a couple of quotes from Eleanor Roosevelt. She said, “you wouldn’t worry so much about what others think of you if you realized how seldom they do.” And, “no one can make you feel inferior without your consent.”

Now that’s better…

2 thoughts on “Life with Meniere’s…

  1. Aww, so sorry for your hearing loss. I’ve never heard of Meniere’s – so interesting and I have to agree with you I’m glad you didn’t lose eyesight. I think that would be worse, but what do I know. I’m happy you shared, and love the photos and quote! My favorite is you reading to your great granddaughter! Precious! ❤️❤️❤️

    Liked by 1 person

    • Since I was diagnosed about 15 years ago I’ve heard of a few people afflicted with Meniere’s. The last one I recall is the singer Huey Lewis maybe a couple years ago. I think he stopped singing and touring because of it. He can’t hear if he’s in tune. My granddaughter Ariana took that picture of Jovi and I after supper one night not too long ago. They come over every Tuesday night. About half the time she watches a cartoon with grandpa, but the next week she wants me to read books to her. They’re both very special and sure break up our long weeks. Thanks for reading and commenting Diana…

      Liked by 1 person

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