I am sitting here in my ‘prison cell’ and reading Tweets and Facebook posts with all the holiday greetings.  Since I am a writer, my mind swirls around all of this.  Having Meniere’s, my head spins around all of this. 

This can be a very trying time for those with Meniere’s Disease whether you keep Chanukah, Christmas or Kwanza.  The menu has to change to limit the sodium (this means most people won’t be happy eating bland food to accommodate you) as the majority of holiday treats are laden with salt.  This can be stressful for someone like me as I feel guilty causing such an inconvenience (not that I get any invites to share holiday meals).  The added stress that society piles on making people feel that holidays cannot be experienced unless you give store-bought gifts to EVERYONE you know can also set us back (and I don’t me financially).  Then there is the stress of decorating and the stress of having to go places and see people you aren’t that fond of.

Stress and salt out of the way, lets look at the other triggers.  Allergies (not one of my triggers), with bringing live, cut plants into your home brings in mold and other airborne allergies.  Digging out the supplies stirs up and allows dust to fly about.  This is one trigger I am glad I don’t have.  Weather is another big one right now.  In some areas it is the rainy season, but mostly folks want snow.  I seem to be set off when any weather front comes near.

If you are a friend or family member of someone who battles this wretched dragon, I hope you will truly be filled with the holiday spirit and NOT push this person to participate in everything.  visit with them so they don’t feel forgotten or left out, but understand that while you don’t see anything obvious as wrong, they are still feeling it on the inside and it can be very ugly for them.  Be understanding and know it is the dragon we loath, not y’all.

Right now, many of you (yes, me too) just want to curl up in a corner and wait out the triggers.  You know yourself and how you are affected.  I send good thoughts to you and hope you will take it easy and not push yourself and pay big time later.  Through these holiday highs (and lows) I will be on the couch if you need me.

If you live in the Knoxville area you know how much rain  (filled in with bits of snow here and there) we have had since December.  I gave up using umbrellas after being introduced to Meniere’s Disease.  You take a physically off balanced person and give them an umbrella, let a gust of wind come along and the result is Mary Poppins flying up the highway.  Getting wet is a better option.  Last June when my original grommets fell out, not only did I spin again for the first time in eight months, but I also gained a new trigger ~ the weather.  I really felt for those with Meniere’s who called themselves walking barometers, but honestly I hadn’t a clue what they actually went through.  Guess someone felt I should have first hand knowledge.  With all the rain and snow we have had, I have gotten to know my couch very intimately.

The incoming storm already has my ears going crazy

Sometimes I think I feel weather fronts moving in 100 miles away.  I can feel my ears crawling and start with a deep ache and look outside to see bright sunny skies.  However, by the time the front moves in, I am in so much pain from both my ears that I have a pounding headache to go with it and I am laying on the couch with the heating pad on my ears.  If I had to choose between this and having full vertigo at least once a month, I would choose my current situation.

I haven’t been able to afford to see my doctor regularly as he desires since I have no medical insurance and no regular income.  However, a couple months ago I was sitting on the couch with my laptop doing my usually Shabbat routine when all of a sudden the room began to spin.  It was all I could do to set the computer aside and lay down on the couch and remain still for a couple hours till it passed.  I knew I had to scrape the money together to go see the doctor.  I went in on a snowy/sleety/rainy day with the hopes that it was just a blockage that could be fixed with drops or suction.  My hopes quickly turned to tears when he said that the grommet in my right ear was dislodged with debris around it indicating blockage.  He couldn’t be sure about the left side so I had to have a pressure test run to detect the status of my eardrums.

I sat and cried.   When I was taken for the test, I walked through the hall clinging to the wall and crying.  It was determined that the right eardrum was closed over but we could not be sure that wax and debris had not gotten behind it to cause infection.  The left ear and grommet were intact and did not appear to be blocked.  I still cried.  I cried in part because I knew how much it would hurt to have the grommet procedure repeated and then it would take several days for me to get back to doing well.  The other reason I cried was recalling that it cost near $400 to have the grommets inserted last June.  I don’t have that kind of money.  One good thing was that it was found after reopening my right eardrum the doctor found that there was no debris, wax or moisture that got behind the eardrum to cause infection.  I have been caught in an eddy of pain and tears for  five months.  Hopefully now I can begin to maneuver out of the area and toward shallow waters if not the embankment.

The rain loves to wreak havoc on my ears and my head

The thoughts for this blog post have been forming for a while, then last night they were coming closer to the surface.  This morning I had a bit of a FaceBook e-mail exchange with another friend and helping to educate her about Meniere’s.  Again, as I was confidently typing my responses to her I couldn’t help but feel so utterly and completely helpless inside.  Sometimes I have to step back and look at myself.  I have the ability to display to the world the most confidence and surety while inside I am falling apart at the seams.  Where do the helpless go to get help and support?  What can we do to sure up the rupturing dams within?

There are some forums on-line and for some of the lucky there are local support groups you can attend in your area.  I have been part of these forums, but there are no local support groups to attend.  I have been approached several times to start one in this area.  However, giving how I feel and knowing it would be common, I believe it would be difficult as we don’t always feel like sitting in a room with others trying to be supportive and therefore we opt to just stay safe and comfortable on our couches and beds.  Sometimes we are supported by spouses, children, parents and others who are there or come over to help out.  I survive on my own.  I have been trying to be supportive of a few others with Meniere’s who need a shoulder and an ear (not that I have much left in the way of ears **insert chuckle here**).    I am glad that I can be here the best I can for anyone who needs me.  Just ask.  If I don’t have the answers I will try to find them or direct to the answers the best I can.

Let me go back to something I mentioned earlier.  Danny Pancy is a gentleman who has Meniere’s Disease.  He is also a photographer.  He put together a 20 minuted DVD to help others understand what we with Meniere’s go through.  The only audio is white noise since we have tinnitus in our ears 24/7.  Mr. Pancy has used his talents as a photographer and the wonderful technology available to distort photos to help display the way we view things.  I have shared this DVD with others so they can better understand.  It helps them feel a little less helpless.  Check out Mr. Pancy’s DVD on his website http://www.shutterfreaks.com/Pancy-Menieres/contact.htm.

For those who have Meniere’s we know there is really know way to feel less helpless when we are in bouts.  For others, those who know us and care about us, staying away is not the way to help us or you feel less helpless.  I know, too well, intimacy with loneliness.  This adds to my stress, but I keep going on knowing it will always be this way for me.  But I plead with others to reach out to those you know with Meniere’s and educate yourself, not for the purpose of trying to ‘fix’ them, but for the sheer purpose of trying to better understand.  Sites like http://www.menieres.org/ and http://www.vestibular.org/ are great sources to start with.  We just want to feel normal and feel like those who cared about us before the dragon invaded are still there for us and still care.  Don’t be afraid just because we can’t do the things we used to be able to do.  There are still other things we can do, like sitting and chatting about life and things in general.  If you treat us differently, especially by disappearing, then to you we become the disease.  Show us that we are still human beings worthy of your time and your friendship.  The helpless feelings may never totally disappear, but they can be diminished in all of us.

I used to love hearing everything.  Never had to use headphones to hear normal things.  Now I require hearing aids or a headset to hear just the things that other people can hear without assistance.  The funny thing is that when I come in from attending a meeting or doing something that requires me to wear my hearing aids I can’t wait to take them out.  I hear every creak in the floor, the furnace clicking on and humming as it fills the apartment with warm air to take away the chill.  I remove the means of my hearing things and remark (occasionally aloud) “sometimes, silence is golden”.

I have had several conversations lately with friends and acquaintances who haven’t lost hearing.  They don’t understand the things hearing impaired folks go through.  They think it a simple fix to put on a headset.  For me, they hurt my ears and I can’t wear them for long periods of time.  Since Meniere’s tends to cause fluid to build up I find it difficult to put in ear bud and even my hearing aids.  So what do you do?

I have found there are many everyday sounds I am glad I can’t hear.  For others that I miss, I compromise.  Music is a biggie.  If I am listening to a song I knew from before I lost my hearing, i can pretty much understand, pretty much from the memory of it as opposed to actually hearing the words.  However, if it is an unfamiliar song, the words and music blend together and I can’t really understand.  I may know that the music is pretty or repulsive.  but the words will be a blur.  For this I go to my best friend, Google.

I can Google the lyrics of songs and then read them to understand.  Then I read them and listen to the song and it helps me to even better know the song.  I can no longer hear the nuances of music or vocals.  I can’t pick out the individual instruments.  I can however feel.  I can feel the music in my heart and soul.  I can feel the beat, real or imagined.  I can feel the inflection in the heart-felt words of the vocalist.  I may not be able to appreciate things the way most folks do, but I appreciate them in my own way and sometimes better as I can ‘feel’ things that those with good hearing take for granted.