Let’s play a little guessing game. I am going to give you some clues about a disease that is not talked about very often. It is an invisible disease that rocks the person and their loved ones to the core. There is no cure for this disease.
- affects the inner ear
- causes episodes which can include severe vertigo, fluctuating hearing loss with a progressive, ultimately permanent loss of hearing, ringing in the ear (tinnitus) and sometimes a feeling of fullness or pressure in your ear/head
- whose episodes can last a few seconds to even 24 hours(+) and the effects can take your body days (or longer) to fully recover
- interrupts your life and causes extreme fatigue, emotional stress, depression, anxiety and even PTSD
- causes major sensory overload
- can keep you from functioning with daily activities
- is exasperating even on the toughest of people and their family
- will, if you are “lucky,” come and go giving you a short reprieve
The disease I described is Meniere’s Disease. Have you heard of it? My guess is that you have not or you may have only heard it in passing. It is a disease that my husband was diagnosed with 3½ years ago. You cannot tell that a person is suffering from Meniere’s Disease just by looking at them. In fact you may not even know from interacting with them. People with Meniere’s Disease become masters of disguising their distress or they just keep to themselves. Every action they perform becomes very deliberate in the hope they can avoid an episode or looking like something is wrong.
The diagnosis was not easy to come by because there are not many doctors well versed in the disease and the presentation of the disease can be so varied despite common symptoms. We spent hours in emergency rooms of top hospitals getting my husband tested, days with specialists running every test imaginable, being turned down to be seen at other top hospitals because after seeing all we had already done there was nothing else they could do to help. Everyone always had the same answer…your husband is a puzzle. I swear to you that phrase became a trigger for my husband and I, to the point where I started telling any doctor we saw that they could not say it. So many times my husband and I just looked at each other with fear and desperation knowing that even the slightest clue to what was going on would help us better understand what was happening and what to do next…but not this time, not today…holding on to hope that the next appointment would be the one with an answer. I did more research, wrote more notes, organized more files and read more information in this time then I had done in my entire educational career. I was searching for what was missing, for that a-ha moment. You know what? I had that moment and it led to further conversations with an ENT (who was the only one mentioning Meniere’s Disease at the time) and a Chiropractor. These two men were able to put all the pieces of said puzzle together, provide an accurate diagnosis and help us find some relief for my husband. I will go as far to say that they saved him.
You may find that statement to be a bit dramatic but if you were living what he was, what my family and I were living at this time you would see that it is the furthest thing from dramatic. My husband went from a perfectly healthy, active, strong, hardworking man holding down a job and being a part of our family’s life to a man that we were not sure was going to live. It was that scary. He turned gray in color, could not walk unassisted, could not find a comfortable safe position where the spinning would stop. The sensitivity in his ears was unbearable, all of his senses became hypersensitive and therefore his environment (no matter what we did) was painful. His eyesight fluctuated between clear and blurry, there was constant head fog and sometimes confusion. He had to go out on disability for a year. We had three young children who did not have a clue what was going on and just wanted Daddy to be Daddy. We had to ask for help and that is not easy. I was trying to be the super glue to hold us all together and figure out this nightmare. It exhausted and wore down each and every one of us. If it were not for the support of close family, friends and even my kids’ schools we would have come out of that journey very differently.
This diagnosis, like others, causes the person to go through a grieving cycle. They grieve who they once were, what they could once do and how they once lived. There is an adjustment period. My husband has been diagnosed for 3½ years and he is still piloting himself through this cycle. There are days I am not sure if this part of the journey isn’t harder than when we didn’t know what was wrong. Weird right? But it is true. I could help before, and so could the doctors, our family and friends. Right now all any of us can do is offer our support and suggestions to help his quality of life. He has to decide how he is going help himself and handle each day. Only he has control over whether or not he allows himself to stay stuck in parts of the grieving cycle. He works hard and supports our family but instead of really living each day, he is just getting through each day. There is a HUGE difference between living and just getting by.
For now, let’s move out of the dark. We were there long enough and sometimes it does creep back in, but it isn’t somewhere we like to take up residence. We prefer to have a cup of coffee with the darkness then politely tell it to enjoy the rest of its day. We do not ask it to sleep over or move in. We choose to focus on the blessings and joys in our life. Meniere’s Disease will always be a part of my husband and our family but we have a choice to not let it define us.
There is more to this story and I will continue the discussion, the awareness if you will, next month. I hope you will join me to hear more (and yes, I will share about that a-ha moment).