Jennifer's "My Life with Meniere's" story (part 1)

Yes, I know I just shared a "My Life with Meniere's" story with you only a couple of days ago, but I felt it was important to get this one in today. Today our guest blogger is going in for surgery to hopefully improve her Meniere's condition. Please read her heartfelt story below and be thinking of her today and in the days ahead while she recovers.

Thank you for allowing me to share my Meniere's story. My name is Jennifer. I am a 40 year old married mother of four Even though Meniere's patients all have the same disease it can manifest itself in different ways and differing severity. For any of you who don't know, Meniere's is a fluid imbalance in the inner that can cause vertigo, ocular disturbances, tinnitus, pressure in the affected ear, loss of balance, loss of hearing, brain fog, slurred speech and falls. Telling someone you are constantly dizzy is putting it mildly. When people ask me what it is like I tell them to go outside, close their eyes, put their arms out and spin around as fast as they can for 20 seconds, then try to walk a straight line without falling down while reciting the alphabet backwards.

It usually takes several years and countless doctors to get Meniere's diagnosed. And even at that, there is very little they can do for it. There are drugs and surgeries to manage the symptoms, but there is no cure. Then there is always the chance that it will go bilateral. Of course if your Meniere's is severe enough, like mine, you are not able to drive and spend a lot of time in bed or on the couch...alone. This leads to depression and anxiety. i get nervous when I have to go out in public. I am afraid of falling, even though I use a cane, or of being thought to be drunk. I have had to explain to all my kids' friends parents that I am not drunk, that I don't really drive and that it is difficult for me to have other kids at my house because I can barely take care of myself. Luckily, my kids have great friends and their parents all understand. I am going to owe a lot of sleep-overs when I am better.

I began having symptoms about 12 years ago. It started with some vertigo every few months, so I didn't think much of it. I put it down to the stress of my job and not eating right. I used to be a supervisor at a mortgage bank. During this time I had 2 relatively young children and my husband and I decided to have more children. At the time we did not realize anything was wrong with me. My oldest children are now 19 and 17. My younger ones are 11 and 7. I was able to keep my symptoms under control until four years ago. I have been on disability for a little over four years. The hardest part, mentally is the fact that I was the bread-winner in the family. My husband worked part time on an opposite shift so one of us would always be home with the kids. He is a fantastic father and was a great stay-at-home Dad. He is better at than me. I have very little patience and am a Type A personality who gets her fulfillment from work, doing a good job and moving on to the next project.

Getting diagnosed was a completely maddening process. I actually had one well respected neurologist tell me that I needed a psychiatrist, not a neurologist. I was so furious I wobbled out of his exam room with as much dignity as I could manage. After dealing with sever neurologists and ENTs I found a neurototologist. For the uninitiated that is an ENT who also have extensive neurology training.

First we tried that standard drugs, meclezine, compezine, and valium. None of them worked. We even tried steroids...no luck. And on top of everything else valium made me a nasty wench. I drove my family crazy for about 6 weeks until I went off it. I've had a tube in my ear and tried the meniette device. That only made me worse and the tube was constantly infected. After 18 months I had the tube taken out.

Ok, so that's the medical stuff. What I really want to share is the emotional, psychological and mental toll the disease takes not just on the patient, but also on the family. I have permission from my husband to share this. He is a very strong supportive man, but I think he is nearing his breaking point with the whole situation. He works 50 hour weeks, comes home, takes care of the kids, if I wasn't able to he makes, he does the laundry and he does all the driving for the kids' activities and the grocery shopping. He is asleep as soon as his head hits the pillow. He very rarely complains and is so patient. He deserves all the credit for keeping our family functioning.

I miss a lot of the kids' activities because I can't even get out of bed. My youngest is playing basketball for the first time this year and I have yet to make it to one of his games. I feel like I'm home, so i should be more involved. The guilt can be crushing. When they tell me that they understand why I can't do things with them they tell me that they understand. They shouldn't have to understand. I know Meniere's won't kill me, but sometimes it makes me wish I was dead to get away from the unrelenting symptoms and feelings of isolation, uselessness and guilt. Don't worry, I'm not suicidal. Just usually depressed and in a deep dark place. I have to remember to climb out of it once in a while and remember there is light at the end of the tunnel.

I am unable to spend quality time with my family, let alone my friends. I have surrounded myself with wonderful people who have not given up on me, even now that I am at my worst. A phone call, a text, an email or a Facebook post can make my day. I do my best to keep in touch even though I sleep a lot just to get away from the dizzies. My husband calls me his dizzy broad. Wednesdays are his days off and we always hope that I will be feeling well so we can actually do something together. It very seldom works out that way. As for sex, well, I have enough motion sickness going on.

A few weeks ago I decided to have an endolymphatic sac decompression. Here is a relevant site: http://www.earsurgery.org/site/pages/conditions/menieres-syndrome.php

I will be having the surgery on Friday 21 October. I have to admit I am a nervous wreck. I feel like I have to do this to try getting my life back. My entire 30's were stolen from me. Years of my childrens' lives have been stolen from me. I have felt isolated and alone for too many years. I am hoping this works. I am a pessimistic person by nature, so I am trying to be cautiously optimistic. I hope to be able to another guest blog in a few weeks to say that the surgery was a success and I am on the road to recovery.

Thank you for sharing your space with me. Anyone who is interested in following my blog can find it at http://menieresdiseaserunningincircles.blogspot.com/

I wish you all the very best!

Jennifer

Thank you Jennifer for sharing your story with us! I can relate to so much of what you said it's comforting yet sad to know that someone else goes through this pain that I know all to well. One line that stuck out to me was, "Of course if your Meniere's is severe enough, like mine, you are not able to drive and spend a lot of time in bed or on the couch...alone." There are many times I've felt this same way....ALONE and isolated. But we are not alone. Just remember every day is a new day.

We look forward to hearing from Jennifer again soon! Of course once she is feeling up to it, she will be back to let us know how the surgery went and let us know how she's doing. Stay tuned! Wishing you a speedy recovery and fewer dizzy days Jennifer!

If you would like to be a guest blogger please click here to see how to become involved!

Much Love,
Shanon