Round and Round She Goes, Where She Stops…

… is USUALLY on her nose.

If you live with invisible disabilities or chronic illness, have you ever stopped and tried to make sense of it all? More often should I choose to do this, I find it simply doesn’t make sense. What can be more difficult, however, is trying to help someone ELSE understand what it is like to be a little “different”.

The words disability is a like a nasty tasting curse word to many. Personally? I’m not afraid of the word because it does currently define my rights under the ADA – something I wish wasn’t necessary but is in order to make sure that those who navigate life differently have the same access and rights as everyone else. I’m not here to today to discuss the WORD, however. I am here to bellyache.

A friend of mine posted a link to a terrific article currently taking up space at Invisible Illness Awareness Week. It detailed why it is important to just LISTEN sometimes. You can access the article HERE.

I belong to a number of online support groups for people with Meniere’s disease. I’ve never met anyone with symptoms exactly like mine. As a matter of fact, Meniere’s disease often frustrates perplexed physicians who are trying to help treat the disease. However, because there is no cure, one can only learn to manage and treat the symptoms. What may help one person, does not help another at all.

My assistance dog, Chloe, from Fidos For Freedom Inc., is a big blessing. Originally trained to be a hearing dog, she still performs all her hearing alerts with finesse and enthusiasm. As a matter of fact, 7 AM came WAY to early yesterday morning when my alarm went off. I tried to tell her to go back to bed and stop kissing my hand, elbow, and right ear. My husband rolled over and said, “Hello? Your alarm is going off!” Oh.

But Chloe actually helps me with far more balance related tasks each day than she does hearing alerts. I tried to “track it” one day and she performed 17 hearing alerts (alarm, kitchen timer, automatic retrieve of items I’d dropped and hadn’t heard, door knock, and cell phone ringing) and over 40 “other” tasks. (I quit counting after 40). These usually consist of directed retrieves. I drop things. I drop things a lot. Picking them up myself takes time as a bend all the way to the floor often precedes a fall. To avoid that, I simply let her get them for me. She also acts as a steady brace when I stand, sit, or go up/down stairs. She also acts as a brace if I begin to weave in a large cavernous place. The picture I chose for this post reminds me how bad my visual field was on Saturday. I ran into the mall with my husband to pick up something at a favorite store. When sound echoes, I tilt. (Picture Denise, aka Leaning Tower of Portis). Chloe has a large handle on the top of her vest that works perfectly. On my lower left is a solid helper that keeps my world from being quite so off center. I’ve been in JCPenney before and let go of her handle to look at some clothing on a sales rack. I immediately felt “swishy” because of the tall ceilings and lights. I grabbed out to keep from falling and clutched the breast of a nearby mannequin. I don’t make these things up. Thank goodness she/it wasn’t real, right?

Yet there are things Chloe cannot help me with, too. Here are some things about Meniere’s disease that surprise some folks:

1. Scrolling words or moving backgrounds on PowerPoints make me sick.

Our church places the words to songs and notes for the message on the walls in the sanctuary. This is very helpful for anyone with hearing problems… or ADHD (smile). However, sometimes there are moving points of light or star bursts that move behind the words or notes. I’m fine as long as I’M SITTING.

2. I have to sit to brush my teeth.

Yeah. I know, I know! Strange! But there is something about moving a toothbrush around in my mouth while in a standing position. I have to sit, and there are days I actually have to close my eyes on top of that!

3. Stepping down can be problematic.

This one really bugs me. On sunny days (weather is a trigger for me), I love to hike and climb around. I love rocks. Big rocks. I love heights (believe it or not). However, stepping down more than 6 inches is enough change in my altitude that I black out. It may only be for a few seconds, but if both feet are not on the ground, I’ll be picking blades of grass out of my nose hair. Chloe has learned that a “Whoa!” from me means

Move.

NOW.

4. Must… AVOID… looking… at ROTATING things (gasp)

Ceiling fans are not my friend. Neither are signs hung from ceilings when the air conditioner vents blow on them to make them twirl. For me this means heave, deep breath, heave again. I’m serious. 🙂

5. I shower while looking at my feet.

I didn’t realize how difficult it can be to get clean when you can’t look up at the shower head. Raise your eyes to reach up for shampoo or your razor? Honey? Do you want to get up close and personal to the DRAIN? Heaven help the family member who moves my shampoo or washrag from their designated place. I count on where they are so that I can shower safely… while looking at my chipped toenail polish.

6. Watching the effect of the wind can topple me too!

We’ve had some terrific storms lately. Since it has brought much needed rain, I’ve been loathe to complain. I love standing on the deck and watching the wind blowing the towering pines behind our home. Clarification: I like hanging on to the rail of our deck and watching the wind blow the towering pine trees behind our home.

7. Gingery’s Baby Pegasus can be mesmerizing to my detriment.

My daughter’s 12 pound hairless Chinese Crested likes to spin. For fun. Imagine that. It is quite captivating, but it only means CAPSIZING for me. “Look away, Denise, Look AWAY!”

8. I fuss at my son’s stomach.

My son… you know the one who was 7 weeks premature? He is 6 foot 3 inches tall. He’s a terrific kid. However, even at 21-years-old, he still needs the occasional “mama sermon”. I dare not look up, Up, UP into his eyes. One isn’t able to reiterate needed reminders when flat on the floor. Instead I point my finger and give his belly and chest “what for”. The kid laughs at me. LAUGHS. (sigh)

9. Glass elevators have speckled carpet.

I know this because I only see the carpet in glass elevators. Why not solids? Stripes? Only speckles. This confuses me.

10. I remind my doctor that I will NOT hold my breath while he’s listening to my ticker.

Because… well otherwise I’m waking up with nurses, hound dog, and doctor crowded around. (Why crowd someone who has swooned? Can I just ask that?)

Like many people who get up every morning and “manage” their symptoms, I hope perhaps I’ve helped you understand balance disorders a little better. Feel free to share your own “management techniques”.

Denise Portis

© 2012 Personal Hearing Loss Journal

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6 thoughts on “Round and Round She Goes, Where She Stops…

  1. You described many things that I struggle with. In fact today has been one of those where I woke up and discovered that walking was not something that would be happening. Also that someone had stolen the pull strap from my walker so my dog wouldn’t be able to grab hold and bring it to me.
    Now, after a few “funny pills” later, I can walk if I clutch the walls and if nobody touches me.

  2. Some days are better than others. I used to wonder why I watch my feet when I’m walking, apparently it is a balance thing. I avoid 3D movies because I get disoriented. I have lousy balance. I’ve learned a dance trick of not looking at a spinning object (a ceiling fan) but on the unmoving object behind it. I step back to talk to tall people rather than looking up. I’m the only person I know who can sometimes get disoriented just by turning my head to look sideways. I’m thankful I no longer keel over when this happens.

  3. Great, great post, one of the best I’ve read this month. Getting others to understand is definitely as confusing if not more confusing than trying to make sense of a chronic condition.

    My problem (this week) has been emotions running high. I’m on a high dose hormone treatment to try and discourage the cancer-like growth of my endo, and I know that a lot of my sudden bursts of…passion…. (okay, okay, I’ll admit it- they’re TANTRUMS) are due to the hormones….but that doesn’t make me any less sad or angry to cry-y or whatever emotion of the day has exploded within me.

    I’m getting into a too emotional place about my illness. Frankly, anyone with an incurable condition really, REALLY shouldn’t dwell on the fact that this is the “new normal” as the popular buzz phrase says. Hearing from other people in similar situations is the only thing that steadies the rocking storm of I’m-just-upset-and-hurting-and-NOTHING-can-fix-it feelings in my heart. So thank you very much for posting something so personal on the world wide web. It is literally the only thing that makes me calm down lately.

    I love your blog, by the way. I just discovered it and I am SO excited to read more. 🙂

  4. Pawpower: I hope you are feeling better! Any way you can use a belt or something to tide you over until you can get a new strap?

    Another boomer: I forgot about how impossible 3 D movies are. I tried one and vowed never to go back!

    Rachel: I’m so glad you’ve found Hearing Elmo! Oh my we’ve all had those “nothing can fix it” days, and it is so hard to try to explain to someone what it is like to get up each day and have that hanging over your head. The elephant in the room, right? Hang in there!

  5. I appreciate whenever you share your experiences with balance issues, Denise. Mine are short lasting and (now) generally mild, comparably. I experienced many of the same challenges, plus a few of my own because I want to be DIFFERENT, which as you say is actually the norm, when I was 16, as well as when I had the sudden onset of symptoms due to labyrinthitis after my second CI surgery. It took me awhile to figure out that I should sit down when I brushed my teeth during that time. I think the low lying ceiling fans have always been an issue for me. I’ve assumed it is because of some merging issues I have with my eyes from time to time but the outcome is the same: look away! I think I shared with you my likely and undiagnosed concussion when I was a teen. I’ve had more vestibular issues than any of the other family with my gene-linked hearing loss. I tend to think my issues are a combination of factors and perhaps you have considered that for yourself and some others as well. Interestingly, I had lunch yesterday with three friends (you know Carol and Beth through the FB CI community, and Carol’s husband Bruce was with us as well). Turns out that Carol developed labyrinthitis after her CI surgery too (though she has just the one right now). We did not meet the criteria for “rare” with that patient sample at the table! 🙂 Thanks for sharing, Denise!

  6. With Meniere’s it’s so funny how we are all so different, yet the same.
    (I got my cochlear implant on July 19th…if it’s ok, I may right you and ask you some questions.)

    I have a very hard time washing my hair. Luckily it’s dry so I don’t have to do it very often, and when it first starts to get dirty it just goes in a pony tail. But oh it makes me sick. Part of it is trying to lean my head back…because I can’t stand the water running in my face (I’ll be on the floor in a minute if that happens) I can’t close my eyes in the shower. And part of it is the temperature change. I know this because I get just as sick if I try to wash my hair in the tub, But that is still easier than the shower…and hubby always has to be in the bathroom when I’m in the shower or bath…often with me, just to hold me up. Remember when showering with your loved one was fun?

    I get woozy if I smell something strong. Like perfume. If I have to be around a strong smell for long, I’ll throw up and start spinning. So I try to avoid that if possible. But it’s not always possible. Darn-it.

    Things that slowly move make me very ill. For example I was watching TV the other day, and a commercial came on…there was a person in the foreground, then in the background things started to appear and they were moving just a little. I nearly barfed before I could look away.

    Sometimes cooking makes me sick…and I love to cook. I don’t know if it’s the smells, seeing things when I stir, or seeing things bubble….or what. But I’ve swooned at the stove a few times…it’s scary to me, but I really do love to cook. I may have to do it sitting down.

    Places that have a lot of noise makes me sick…and disoriented. So I really understand your mall trip.

    I’ve been looking into getting a service dog. I’ve written a few places but no one has written me back. Unfortunately Fido’s for Freedom do not serve my area.
    I can’t call these places and I explain that when I write, ummmm, that’s why I need a hearing assistance dog…I can’t hear.

    Great post as always.
    always give people things to think about with great information.
    wendy

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