Meniere's– "As The World Spins"

Thursday, a friend in Second Life asked me what bothers me the most that people say to me when I am feeling the way I feel when I am having not-so-good and close to bad days (can’t get on-line to chat when I am having bad days, the vertigo just doesn’t cooperate).  As my head was nuts, I didn’t see her question and so she thought she offended me with it.  I scrolled back, read it and then apologized for not seeing it.

This question gave me pause.  I could have burst out with all kinds of things, but held my tongue.  So many people mean well and just say what they think they should.  However, just as helpless as others feel, those of us with Meniere’s (or any chronic illness for that matter) feels just as if not more helpless.  For me, I think it is those who just sputter out “feel better soon” or “I’m praying for you”.  I know these comments give some sort of peace to the speaker, but not to me.  It has nothing to do with who is speaking.  In general, I feel a warmth knowing that someone cares enough to attempt to help me feel better.  It is my head knows that I will feel this way at some level until someone finds a cure for this (thus far) incurable disease.

Years ago, before she passed away, I had an elderly neighbor, Ms. Jewel.  She was so sweet.  She wanted me to let her know when I was in a bout and one time she was chastising me for not telling her I was laying up stairs for two days with vertigo.  I finally aid. “What could you have done, but watch me sleep” as that is all I can do when I am vertigo.  I take my medication and it knocks me out, so I sleep.

Not knowing what to do or say, I believe is what causes many people to “leave” when someone gets sick.  There are times that a person may have an illness and require others to be there to tend to various needs.  But so often, when the person who suddenly gets an illness can no longer do the things you used to do with them you can’t figure out how or where you fit into their lives any longer.  This is what has happened to me.  I used to hike, play volleyball and many other things before Meniere’s entered, all those people I did these things with are gone.  Perhaps I can no longer engage in these activities, but I miss the friendship and camaraderie I felt with these people.

If there is someone in your life that has Meniere’s or an illness that is “invisible” and they are unable to do many things, don’t be afraid.  You don’t have to always talk about the illness and while it may be a bit painful to talk about the things you used to do together, it can also help that person.  It can remind them that your friendship is greater than the activity they can no longer engage in.  Call them up, or better yet, go see them.  Just sit and spend time with them talking about anything.  If there is something you see that needs to be done and you know they are unable to do it, volunteer or just do it for them.

Other things to help both of you feel useful instead of helpless, take the person for a drive (if their health permits) and just enjoy some time outside.  Personally, I get tired of not being able to get out and enjoy the out of doors and would love to have someone care enough to take that kind of time to spend with me.  We want to feel like useful members of society.  Anything you can help this person do to accomplish that is a good thing.  This morning I was texting with a friend in another state and she is one of three that I bid “good morning” to every morning (unless Galar is visiting) and this helps me in a small way feel like a useful member of society.

Little things mean everything to those who can no longer do the big things in life.  Even if someone takes the time to bring me something that  I don’t necessarily like, I appreciate it more than words can say because I know they were actually thinking about me and wanted to see me even if it was for just a few moments.

I have a lot to get done in the next two weeks so this will probably be the last words I post here within Blogtopia.  Some have said they read my Meniere’s Blog regularly.  Either they missed my Letter Of Resignation, or they just didn’t care.  Since I am an advocate of giving people the benefit of the doubt, I will believe that they just lied to me in saying they read it regularly.

I spent last night in and out of sleep.  When I was out of sleep I was thinking about everything that still has to be done.  I woke up thinking about this post.

There are those who will wonder why I didn’t come to them with all of this.  Well, how could I bring you my tears when you didn’t want to share in my laughter?  In my life I have had one thing in my heart that I have striven to bring forth to the world in my meager words and that is peace through understanding and acceptance.  The world has not listened.  My heart is not to be heard.  The world is not ready to hear what is in my heart, for it would rather hold onto its anger and hatred.

Perhaps in my next life, the world will be ready to hear what is in my heart.  I believe that the intent of the heart follows you into your next life, so perhaps I have been trying to get the world to hear my heart for generations.  Not this life, but hopefully the next.  If you desire to me honor after I am gone, then remember the message of my heart and learn to accept others no matter the differences and understand that everyone is a human being above all else.

True peace will come when people move beyond the fears of what is different and accept everyone as individual human beings without the anger and hatred that continues to bind this world through ignorance.

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 once had a writer friend of mine tease me about my ancestral heritage.  I call myself a J.I.G.  I am part Jewish, part Irish and part German.  He said the German in me wants to fight all the time, the Irish wants to drink it over first and the Jew just feels guilty about the whole thing.  Since I have been diagnosed with Meniere’s disease, he and many of those I have shared this with tell me to hang tight to the German side and fight.  I am done fighting.  Due to the medication I take, drinking is out of the question (though I really wish I could just drink it away).  I will, however, feel guilty for the duration of this illness.  Since there is no cure, I will feel guilty the rest of my life.  The guilt is what I feel for being a burden on anyone.  Whether it is trying to talk about it all the time or having to get someone to fill in for me at the last minute because I cannot tolerate the pain or off-balance that comes my way.

I am constantly getting comments from people, usually when I make a post about the pain I am in on Facebook/Twitter, saying I am in their thoughts and prayers.  Generally speaking there is nothing wrong with this.  People think that it helps to bring comfort to those who are ill or in pain.  For some perhaps.  I, however, am over it.  I started spinning again last week.  I haven’t been to the doctor since September due to no income and no insurance.  I scraped the money together and went since I knew something was wrong.  I was scared, nay, terrified.  I had to drive in the snow (since the first snow I drove in was a blizzard, I am always scared driving in snow.  That is coupled with the fear I have driving period since having a vestibular condition) and was severely off balance.  The pain was also hitting me hard.  There was no one to drive me.  When I IMd a friend to let her know (not that she could really do anything since she is in California) she was telling me to have fun in the snow and kind of missed the point of why I was letting her know.

I was anticipating never returning home from that appointment.  My two doctors and the two nurses could see how scared I was.  I got a few hugs and arm rubs from them in an attempt to reassure me.  They had to repeat the procedure to re-insert another grommet into my right ear.  Unless you have had this procedure done, I cannot explain how it feels.  But since I usually scream for the duration, that should be some indication to you. It is during this that I really realize how alone I am.

It is nice to tell someone you are thinking and/or praying for them, even if you are not.  But during these times, it would be really nice to have something or someone other then my stuffed teddy bears to hug and have hold me to reassure me that it will be all right.  Each time I go through this, whether the weather related issues or needing to have the procedure repeated, it strips away more of me.  I have no fight left. I have no strength left to even thing about fighting.  I have come to the conclusion that it takes people really being there for you (not just in word or thought) to help you replenish your will to fight and your faith and belief that what you are fighting can be conquered.  Galar will defeat the damsel in the rewrite of my short story The Damsel And The Dragon.  Meniere’s has won the war.