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.

The beginning of September 2008, I set an appointment with my neuro-otologist to have grommets inserted into both of my ears for the purpose of using the Minette Device.  The device would cost me $3500 out of pocket.  At the time this wasn’t a real major issue as I had some money in the bank and could cover it.  However, two weeks after setting the appointment, I was told that ten of the twelve employees at work (including me) would be losing their jobs as of October 31, 2008.  I was devastated and and contemplated not having the procedure.  Friends I discussed this with urged me to go forward with it and if I ran into financial difficulty due to all of it, they would be there for me.

I have always been taught that if you treat others with respect and in a dignified manner then it will be returned to you.  In other words, “You reap what you sow”.I have always done my best to treat others respectfully.  Even those who have done me ill I treat at least cordially.  After all we are all human beings and must get on together to survive on this planet.

Friday, I went for my three month check-up with my Otologist.  He came in with his nurse and nurse practitioner and asked how I was doing.  After a bit of banter I told him that I am still looking for a one-way ticket to Iraq.  a little more banter and he realized I wasn’t joking when I asked him to schedule my autopsy I have been requesting.  He preformed the exam and then I stood there and proceeded to throw a bit of a tantrum.

I know what you are thinking, but put away your visions of a two-year-old pitching a fit.  I don’t scream, yell or stamp my feet (I’d fall down if I tried).  In fact, the worst I have done in recent history was call the workers at Hardee’s a bunch of plebeians.  I went on to say, through a veil of tears, that I am angry, bitter and just plain unhappy.  The trio only watched, listened and tried to answer my questions.  My doctor felt this long over due as well as educational for his green nurse practitioner.

This past weekend I updated my computerized Medial Alert Card (ICE).  While I did this I was prompted to add my Living Will and pulled it up as well as a form to complete my Last Will and Testament.  I went back through the pages of my life as I completed these forms.  I remembered the promises of others along with the promises I made to myself.  It seems all those promises were empty.  I would like to think that those who made those promises to me made them in good conscience.  However, from here, looking back they are empty and without the prospect of ever being filled.

I had dreams for my life.  I wanted to be a wife, mother and ultimately a grandmother.  It was my deepest desire to pass on to my children and grandchildren all I learned from my grandparents.  But in one god-forsaken diagnosis all my dreams were shattered and fell to the ground around my feet.  There is no shoulder for me to cry on.  No arm for me to hold to steady my balance.  I am angry that there is a disease that has no known cause, no known cure and not very much research being done to rectify this.  this leaves me unhappy and alone.  The loneliness has bred bitterness.  If only the promises had not been empty perhaps some dreams would not have shattered.

Through the years my steadfastness on this topic has not wavered. Pet peeves have crept in which I file under “stupid people doing stupid stuff.” Now, however, I hesitate in giving a reply. To most my answer remains the same. To me it is far from the truth.  While forms of abuse still ruffle my feathers, and probably always will, there is now something else that feeds the raging monster of anger with in.

Vulnerability. Helplessness. Weakness. No matter what word is used, it still comes from within. When your body brings about a disease it has a way of throwing your life and manner of thinking into a tailspin not easily recovered.

My body started behaving in a way that it should not. No one could tell me why. When I received a call from a “substitute” nurse wrongly telling I had diabetes, I thought my world was ending. After losing my grandmother and a close friend to the disease this news hit me like a sledge hammer on a carpet tack.

In a manner, I wish diabetes had been the answer. However, several weeks later I listened intently with some relief as my doctor explained that in fact, I did not have diabetes. I am pre diabetic. This news only gave a short term air of solace. We were back at square one. If not diabetes, then what.

Seven months! It took seven months for the parade of doctors to diagnose me with Meniere’s Disease. This disease had been mentioned to me by one doctor two months before the diagnosis. At that time my research began. My findings were anything but reassuring.

Meniere’s disease has no known cause, no known cure. These words plunged deeper into my heart and soul then lead weights into the deepest sea. As a perfectionist, I like being in control of my actions and my body. This time is no different. No one can tell me why I have Meniere’s. No one can tell me how to eliminate it. Needless to say, I am not a happy person.

What makes me angry?  Having a disease that no one can explain makes me very angry. I cannot explain why. I just know I am angry though no one is to blame. Even though a few aspects of the disease were gradual, most were not. I feel as if my normalcy had been snuffed out like a candle.

What is my response to everything?  Isolation and self medication. It is easier to withdrawal and shut myself off from the world. I trust no one and cannot trust myself to be around others. Pondering these issues and others, I often cry myself to sleep. To prevent this, I take Benadryl or drink valerian tea to put myself to sleep. Weekends in isolation are worse. I have been known to spend them with alcohol to numb my body, mind and soul to prevent thoughts of Meniere’s from seeping in.

So, what is at the heart of the matter? I cannot trust and will not try till the anger goes away. The anger will not go away till there is a cure for Meniere’s Disease and that is improbable in my lifetime. Hence, a very vicious cycle.