An eddy of pain and tears is what I have been experiencing for at least the past five months.  For those not exactly sure what I mean by eddy, well an eddy is a whirlpool in a body of water.  It is usually accompanied by turbulence and can wreak havoc on any vessel nearby.  Six years ago I loved the changing weather.  Not really a fan of snow and sleet since the first snow I ever drove in was a blizzard and I know how dangerous snow and ice can be (not to mention C-O-L-D).  But I did enjoy rain and its purifying properties in the spring and summer.  I would occasionally sit out on the deck and watch the rain as it fell on the cemetery and playground of the church next door.  It was calming and relaxing.  Now, not so much.

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

Anyone with a chronic illness or close to someone with a chronic illness is all too familiar with the feeling of being helpless.  I feel that way so often I sometimes think I don’t have any other feeling inside me.  Last night I was in Second Life® and chatting with a friend who also has Meniere’s Disease.  To start, Second Life® is a virtual reality world on-line where I got my life back after the dragon of Meniere’s invaded.  I was able to use my avatar to do things that I could no longer do in Real Life.  You can check out my Second Life® blog for more about that world.  The gentleman I was chatting with was experiencing issues due to Meniere’s and was also expressing some frustration regarding his girlfriend’s difficulty understanding what he goes through; but she tries her best to be as supportive as possible.  I recommended he read this blog and also check out a DVD put together by another person with Meniere’s to help loved ones and those new to the illness to better understand.

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 went to iTunes the other day and searched for Meniere’s podcasts. I found three podcasts listed.  All three were of a medical nature (Johns Hopkins, etc) and only had one or two episodes about Meniere’s and/or vestibular issues.  In my feeble mind, this is unacceptable.  I was looking for something that I could add to my iPod and crank up the sound and listen to to get tips and ideas for people who have Meniere’s from people who have Meniere’s.  There was nothing.  I want to change this.  It is my desire to start a podcast that covers this as well as flavors it with some technical information from the professionals (i.e.: Neuro-otologists, ENTs, etc).

Please leave a comment with your thoughts and ideas regarding this podcast formation.  Then send the link to all your friends and family to allow them to provide their input.  Even those who don’t have Meniere’s, but know someone with Meniere’s can have much to add to to help us and we in turn can help them.

Also, eventually, as I am still in the process of writing my book about Meniere’s, I would like to incorporate information gathered during the podcasts into the book.  It is still my greatest desire to do all I can to educate the world regarding Meniere’s and when the book is published ALL my royalties will go for Meniere’s research.  There is not a lot of education, publicity nor research for Meniere’s.  In fact, so many of us never heard the term Meniere’s Disease until we were in the process of being diagnosed.  I want that term to become as much a household term as Cancer and Diabetes.  I can’t do it without your help.

I was awakened this morning at about 0230.  While I took my Xanax before bed (trying to be a good girl) the pain still broke trough with my left ear and I couldn’t get back to sleep.  So here I sit with the local news on, coffee (which I rarely drink) sitting next to me and writing a couple blog posts.  In my foggy, painful haze tossing and turning trying to sleep for a couple more hours I had many thoughts going through my head.  One that resounded is what an awful and wretched person I must be to have such a horrid disease as Meniere’s.

I tried to have more pleasant thoughts to lull my back to sleep, but they just didn’t come and the next time I looked at the clock an hour had passed.  I figured that since I intended to get up early to go do the laundry and run errands I would just go ahead and get up now and try to do something productive.  Here it is.

It seems that when my head is in this Xanax/Meniere’s induced fog (at times lasting several hours after getting up) I have what I call my “hair-brained” ideas.  Some of them actually turn out to be good once te fog lifts and I can tweak them and think them through.  Others, not so much.  This morning as I tossed and turned and tried to find positive to return to my slumber, I thought about this blog and how idle it seems at times.  Then the proverbial light bulb went off.  Use the blog to relay information.  As the fog is trying to lift, I recall that was my actual intent when I first set this up.

During my early morning visionary thoughts, there was a crawl at the bottom of the screen.  “Surviving Meniere’s” was all it kept repeating.  Then I came here to post.  I have chatted on-line with many who have Meniere’s and while we cope and try to get our loved ones to think we are truly surviving, we are not.  We are in fact, just going through the motions and living moment to moment.

Surviving implies winning.  Every day that we make it through with out going stark raving mad, removing our ears or at worse eliminating ourselves is survival for us.  While some do not experience some of the symptoms that can really send you reeling, each part of this disease takes its toll on the body and soul.  With this in mind I am going to begin here in this series of Surviving Meniere’s and looking back at my last blog post which was a sort of chat with Mr. Van Gogh.  One thing you need to survive, or at least give the impression you are surviving is a sense of humor.  So dust yours off, or if you don’t have one, find one (beg, borrow, steal, buy.  Whichever method you can to obtain even a little bit of a sense of humor).

It can be difficult to find humor in this disease.  But when relating stories of your bout against the ugly dragon, the humor can find its way to the surface.  I had taught myself to drive with full vertigo and when someone would find out as I would chatting with them and we were both heading to our cars, I would tell them it was okay, because I was always good at coloring between the lines.  I would drive by focusing on keeping my car between the lines on the roads.  With horrified looks on the faces in front of me, I would always retort, “It’s okay, I will give you a head start out of the parking lot.”  This would invoke a chuckle and lighten things up regarding a nasty situation.  No, it may not be easy to find humor, especially when you have been full vertigo for days, but trying to can help put you at ease and thereby those around you are put to ease as well and can make things just a tad bit more tolerable.

Here is to a spin-free, pain-free day.

I do apologize for being away for so long.  I have been having computer issues which have prevented my posting here.  I am back now and will have an up-date soon.