This is another one of those things I’ve contemplated writing a couple of times over the past few years. Started, stopped, and deleted more times than I can count. It’s another one of those things that the fear of reactions and stigma keeps me from doing.
Many of the people in my life know that I have Meniere’s disease; many do not for fear of misunderstanding of what it means. When you tell people you struggle with balance they either laugh and make a crack about being drunk or worry about how safe you are doing what you love. They also look at me and out come the ‘you don’t look sick’ thoughts, when you say you have a chronic illness they expect you not to be able to do things. I work a full schedule, heck I work around 50 hours a week, I volunteer, and recently returned to school. 7 years ago I could barely get out of bed. I thought my world, my dreams, my ‘everything’ was over. I was 29 years old and I thought I would never live a ‘normal’ life again.
As I’ve watched my Facebook memories be inundated with the beginning of my journey with Meniere’s I’ve marveled at how much things have changed.
At this time seven years ago I didn’t know what was wrong with me other than yet another ear infection that seemed to be causing sever vertigo and dizziness and that I was quickly losing my hearing in my left ear. If it hadn’t been for the hearing loss I would have been sent home with a ‘yup, being dizzy sucks but it’ll get better. It may take weeks though’. I was basically told this but when I commented again on the feeling that I couldn’t hear anything out of my left ear hearing test happened, one after another as my hearing got worse and worse, going from an 8% loss to an 80% loss in a couple weeks. A loss that has never returned, it occasionally fluctuates to slightly better and slightly worse but has not and will not return. I spent the next few months of my life getting tests. The original thought was a tumor…when my MRI and CT scans were all normal we talked with my doctor. The first words out of my families mouth was “is this Meniere’s, Grandma has Meniere’s”. The problem with Meniere’s is it’s usually a diagnosis of elimination. They test for EVERYTHING else first, but luckily these words led to testing and a diagnosis, a diagnosis that takes most years only took me months.
Of course knowing what was wrong didn’t make it all better. It meant medications to help manage but it also meant constant light dizziness and at least weekly ‘teacup moments’ as I began to internal refer to the days that felt like a teacup ride. There’s nothing like nearly falling over cause the room is spinning so fast around you as you just stand there. I’ll always remember my bosses kindness at first that turned to frustration, my co-workers disgust as I have to leave early, again, clinging to my mom and just praying to get to the car, my room, and my bed…praying that I don’t puke or pass out in the process. Some of the people I worked with were amazing, compassionate and caring; most thought I was faking it because in general I didn’t look sick or they didn’t understand the idea of chronic illness. I fought so hard to hide it, for normalcy, but also Meniere’s doesn’t always look like clinging to someone desperately as I pray the room will stop spinning. Often it looks like a steadying hand on a wall, a slower movement, stiffer body as I strive to move my head as little as possible not wanting to wake the lightly sleeping dragon that can destroy the world. This was my life seven years ago and for many years after.
I woke every morning terrified about what would happen when I sat up, when I opened my eyes. I lived in fear of the dizziness and in utter terror of the vertigo (there are totally different things!) I was positive that my ability to work with kids was over, that my life was over, and that at 29 I was done. I spent a lot of time curled up in my bed waiting for the world to stop spinning, laying in the dark in tears as my life passed me by. But things got better. Meds that worked were figured out, I figured out what movements were ok and which would power up the tilt-a-whirl. You will never see me spinning around, or lying on the ground looking up at the sky, you won’t find me looking up period, not looking down from a height. I close my eyes a lot when watching movies, especially in the theatre, now a days as the popular rapid movements are my undoing. Flashing lights, especially strobes, are EVIL! I know these things and I avoid them but unlike seven years ago they don’t send me into an immediate tail spin anymore.
The thing is I still have a chronic illness, there are still days where I wake up and the room is spinning around me. I take appropriate meds and when I can curl up until it goes away. I occasionally have to back out on extra activities but have not had it affect my ability to go to work, to do my job in YEARS now. There are those times when the people who know me and have gone through this journey with me watch as my hand slides along the wall and they check in but usually I’m ok, I’m struggling for a straight line but that’s unusually all. All of this has made me think about what it means to have a chronic illness. I will forever have Meniere’s, unless a miracle cure is developed but since they still aren’t 100% sure what causes it I don’t see this happening in my life time, I will forever have off days, and will forever have things that I can’t do, or at least have to think about like when I went on the rides at Disney with my niece and nephew or showed a little girl how to do a pirouette. It will always be a part of my life but it won’t end my life. It won’t take away my ability to do what I love, and what I do well. I refuse to live in fear of the bad days; I refuse to live in fear of what might happen. I may have Meniere’s but I am fighting for it not to have me.
PS: As so often happens this went in a different direction than originally planned. This whole things came to mind again of the FB memories but also because of another blog I read about being Chronically ill entitled “Too functional to be Chronically ill but too sick to be healthy”. It made me start thinking about my own illness and how much things have changed over the past few years. I’m not 100% healthy and there are things that I am limited on but at the same time I’m doing pretty stinkin’ awesome most days. I have jobs that I love and am living my life but I also have days when I need a down day. I need a day where I’m not expected to do anything and times when I need to remind myself to not overdue it.
My 'Secret' Garden 