So I’ve been
a bit a lot distant. And you haven’t heard very much from me. Truth is it’s been crickets over here all summer while I’ve been quite busy managing unexpected health Blarg!
It’s no secret I have Crohn’s Disease, an Ostomy and I’ve even mentioned my Asthma. But then there’s that other health thing I balance and pretty much never talk about. In part because it’s been relatively stable and because it’s not fully IBD or Ostomy related. To get straight to the point, I have Meniere’s Disease. (Like I really need another thing. Right?) I’ve been diagnosed for about five years but have dealt with symptoms since my mid twenties. Up until recently it’s been a thing that’s kept me off boats, festival rides and makes me woozy on airplanes, elevators, bridges, docks and most buildings two floors and higher. Every so often the tinnitus would act up or I’d get dizzy easier than normal. But it was manageable and largely not a big deal. The Meniere’s diet is a low sodium one which is opposite of Ileostomy diet. So I figured they balance each other out? As long as I was feeling well I didn’t worry about any of it.
Meniere’s (by my own non-science description) is the sensation of often painful fullness and pressure in the ears, tinnitus which is ringing, thumping, whirs, waves and that loud sound when a microphone has feedback problems. I’ve experienced short periods of time where my hearing blanks out in one and sometimes both ears and I hear nothing at all. Silence. I struggle to hear in crowds, meetings and classes where there is background noise. When my ears are flaring, understanding the people I love most is the job of mentally wading through the noise to focus intently on the sweet voices that are being distorted and pulled apart by a chaos of sound that only I receive.
It’s easy to sneak up on me. An unfair result to my family is that I am easily startled when they enter the room. I have no idea they’re headed my way. I’ve lost the sound of their footsteps.
The quiet things that fill in the tiny parts of a joyful life ~ like the sound of my husband breathing as he sleeps, birds as I sip coffee on the back paddock in the morning and neighbors approaching up the street as I play with my plants in the front yard have all been given an annoying auditory addition that sometimes blots the sweet quiet things away.
Tinnitus keeps me awake at night. At times the noise is maddening. I get irritated and smothered by it. It is sometimes emotionally difficult aka sometimes I privately cry, wipe those damned tears away and get back to it. I stay busy and cushion myself with the sound of my children to drown it out. I’d much rather hear them than a high pitched EEEeeeeeeEEEEeeeeee any day. Closed Caption and TV volume turned up high is how I understand a movie without bothering the husband or child next to me with “Huh? What did she or he say?” I’ve recently decided to stop asking and ruining their show. Conversations in the car are trickier. I keep reaching to turn the radio dial up to increase the volume of my children’s voices. (I wish that were a real thing.) Instead letting my hand go back to the steering wheel and ask them to repeat louder for Mama…again.
Meniere’s is more than hearing. It’s severe vertigo. Shortly after moving to our new house, without warning I was sea sick on dry land. My head was caught up in a storm and my compass was tossed. I could feel my eyes involuntarily twitching in my head trying to find solid and unable to recognize it. I clung to my bed sweaty and desperate. I climbed on fours into the shower and laid on the cool surface for relief and a safe place to vomit. Thank God for Crohn’s Disease and a forward thinking prescription for nausea meds that melt on the tongue or I would have been desperately dehydrated. My body wanted to void more than it actually did and my output was a violent spouting of liquid in the Ileostomy bag. I could not eat or drink. I was a human Exit. When all was gone I was a naked, ratty haired carcass capable of breathing and gag reflex. I was worried for my stoma herniating. I was concerned about fluid loss. I was afraid of how much worse this would get if I had to go to the hospital. The ride alone…. In that place I could not imagine it. After two and a half days with no North I was left limp and used up. Slowly over the next few days the vertigo passed and I was able to carefully navigate around. I’ve not made it back to the care free normal I was before this latest tossup.
Turning my head too fast, some movies and TV shows, walking in a dark room without touching walls or surfaces for reference and even closing eyes while rinsing hair in the shower sets my head in a mini spin. I am clumsier than normal and I have even stumbled and fallen once because of it. I live in brain fog and vomit more than an Ileostomate should. The energy it takes to understand those around me, navigate the world and do well in it creates a fatigue that we as IBDers understand. I just feel as though I am carrying enough for two right now. Sometimes all I can do is lay in a cool dark room and breathe until it passes.
In case you were wondering, when it comes to Meniere’s Disease there is little funding or understanding of the cause. There is no cure and treatments are life limiting.
I am receiving care. I take meds for vertigo and nausea which so far are sedating and largely ineffective. I am hopeful for the most recent med and would love to report in a few weeks that it works. We shall see what time will tell. But as IBDers, we understand that patience through the process of discovering the right med is part of the twisting road to finding the very best fit. I feel lucky to have doctors that are working the problem. Before this is done I imagine more experts will be welcomed to the team.
All this adds up to me taking it easier. I’m not participating in all the fun things I would rather be doing on a fine summer with my little family. And frankly, I haven’t shared with you because I’m not so jazzed about this turn of events. It’s still a work in progress to find reasonable relief.
No happy ending yet.
But there’s gratefulness for a supportive husband, helpful children and invested doctors.
Much love to all of you my Sweet Bolognas <3