Tuesday, May 25, 2010


For most of my life, I've had a fear of birds. I mean real, terrifying, irrational fear. My husband found it funny, even buying two parakeets to torture me. His way to help me with my issues has always been immersion therapy without the gradual steps of exposure. I understand where he's coming from, but it doesn't help when this thing is flying around the room at your head because it doesn't want to get back in the cage. To be honest, when the first one died I was secretly relieved. When the second one flew away because my husband cleaned the cage outside, I was absolutely giddy. That's one fear that wasn't in my face constantly.

In March I was transferred to my company's corporate office. One of the things that I noticed about the campus was the abundance of geese. They were everywhere. And they had no fear of humans. Great. I started out trying to get into and out of the building as quick as possible. Eventually I started walking on my lunch and ended up mere feet from these creatures and they didn't attack me. That led to me talking to them and eventually giving them snacks. I conquered this fear on my terms and on my own. I'm not ready to go out and get a parrot and perch it on my shoulder, but I'm miles from where I was months ago.

Some of my other fears are not so easy to conquer. They are fears I rarely discuss with anybody, including my husband. I've lived with them for 10 years - they hang over my head daily. What makes it harder to deal with is the fact that most likely one, if not all, will happen to me. Fear is a constant companion for someone with a chronic illness. What makes it so hard is Meniere's disease is not fatal so my fears haven't been taken seriously by people close to me. My grandfather had it and all he had was hearing loss and a few drop attacks. He also was in his 70's while I was 30 when I was diagnosed and this is a progressive disease. I have a 40 year head start. Lucky me.

My biggest fear is probably the one that is the least life threatening. I'm horribly terrified of losing my hearing, yet I have already lost a good bit of it. I guess the reason it frightens me is that I would give up all my other senses to keep this one. I can't imagine not being able to hear music or talking with my family and friends. Don't get me wrong, I am not trying to whine about this, but it is really hard to face the fact that I may be on borrowed time. I could learn sign language. I have considered it, but for right now I don't see any benefit. The day it took the lady in the cafeteria a few times asking what bread I wanted before I could understand was the day I realized it wouldn't help me. She was frustrated, I was frustrated, and it didn't help when I told her I was hard of hearing. Everybody around me turned to look at me and the woman gave me a very strange look. How is sign language going to help in that situation unless I take along an interpreter wherever I go? I just pack my lunch now. Situations like that make it difficult to use my standard smile and nod approach.

Another fear is that I will seriously injure myself due to my balance problems. Now when I am having a bad time with my balance and fall, it is just embarrassing and I feel foolish. As I get older I risk serious injury that could prove fatal. My work in the medical field has exposed me to just how dangerous hip and vertebrae fractures are in the elderly. I also personally know of someone how died from a blow to the head from a fall. He had an attack of vertigo in the shower and fell, striking his head on the edge of the tub. I really fear that this could happen. I can't always prevent falls. Sometimes I have an attack without warning and have no way to steady myself.

This last fear is probably irrational, but this has already happened to me so I know how horrible it is and don't know if I can face it again. When I was first diagnosed, I spent the first 6 months or so in a constant state of unbalance. I could not drive, I could not go to the store alone, and I couldn't walk straight. Watching television was beyond difficult. The most frustrating thing for me was that my vision had to compensate for what my ears normally did. That meant closing my eyes and being in the dark made things much worse. I would lay in bed with my eyes open until my body gave up because closing them would give me horrible vertigo and nausea. I still have it sometimes, but nothing like that. The longest attack I have had since was a couple of days. Most are minutes to hours. I can handle that. I don't think I could handle the 6 months or longer. I seriously don't know if I could live like that. It is a hard thing to say, but true. Walk (or stumble) a mile in my shoes or the shoes of any other sufferer of Meniere's and then tell me how I am supposed to feel. I don't dwell on this fear, but it is sort of always there. I can't talk about this fear, because I don't want to bring everybody around me down. My poor husband has enough to deal with when it comes to my illness. He is educated enough on it to know that people with Meniere's have a higher rate of suicide than normal people. That is one reason I had to walk away from Meniere's support forums. Several people on these boards took their own lives while I was a member. I just couldn't handle seeing people like me giving up on everything. This illness is insidious. It gradually takes everything away. There is no cure and treatments don't always help and aren't covered by insurance. If you become so sick that you can't work, good luck getting disability payments. It can be too much. I hope I won't get to that point.

So fear is a big part of my life, but it isn't my life. I still manage to do well despite my limitations and sometimes I forget I have a chronic illness. I even have hope that some day I can look back and say I conquered these fears on my own terms. Until then I'll just keep spinning.

Sunday, May 23, 2010

A Little Bit About Me

I was officially diagnosed with Meniere's Disease ten years ago, but I have a feeling I've had it for a while longer. The signs were there, but nothing bad enough to do anything about. My journey is like that of many others with the illness. It took me a while to get a proper diagnosis because my doctor didn't believe I could have Meniere's. My grandfather suffered from it in his later years, so I thought Meniere's may explain the problems I was having. There was no way I had Meniere's because it doesn't run in families and it is too rare of an illness for me to have, but he sent me to an ENT anyway. When he told me that I in fact had Meniere's Disease, I was not surprised. He indicated there can in some cases be a familial link. At that moment I was so happy that my doctor was wrong that I didn't understand fully what my life had become. What he said next tore my world apart and shook my faith in the medical profession. He gave me a brochure on low sodium diets and told me to go look up Meniere's on the internet. His last words to me were, "you'll learn more than I know. Come back in six months." Come back? If you don't know what to do for me other than send me home to figure it out for myself why should I come back?

At that point I truly was alone. I was a stay at home mom with three young children in a troubled marriage who couldn't drive and could barely walk without assistance. On top of that, I was losing my hearing. I could not and still can't imagine a life without it. I got down to business educating myself and doing everything I could to live a normal life. I had three children to raise and making sure they had a good upbringing was more important than anything I was going through. I was eventually able to drive again and even manage to sometimes drive on the highway. I also made it through college and carry two professional credentials. My marriage is stronger than ever, but I think that is partly due to my husband realising that nobody else would put up with him. I still have my bad days where I lay in my bed crying "it's not fair," but overall my life is good. Dealing with a chronic illness can be a blessing in some ways also. Knowing how fragile things are makes me really appreciate what I do have.

Here are the main symptoms of Meniere's Disease:
1) Periodic episodes of rotatory vertigo or dizziness.
2) Fluctuating, progressive, low-frequency hearing loss
3) Tinnitus
4) A sensation of "fullness" or pressure in the ear.

Frequency and intensity of symptoms vary among individuals. Some people are so disabled by the disease that they can't work or drive. Others have a milder course that allows them to live their lives completely normally. I am in somewhere in the middle at this point. I don't know what my future holds, but I'm determined to enjoy every moment.