For the past year, I’ve spent every day on a boat. When I stand, sit, walk, or lie down, I’m on a boat. When I read, eat, talk, or watch television, I’m on a boat. As I write this, I’m on a boat.
But I actually haven’t been anywhere near a boat in more than a year.
In June of 2016, I disembarked from a calm (and very fun) 7-day cruise. I felt fine, but six hours later, it started. I took a few steps and was struck by strange rocking sensation, as if I was floating in a tube in a water park wave pool.
That day was the beginning of my experience with Mal de Débarquement Syndrome. I didn’t know it a year ago, but MdDS would change my life and send me on a frustrating and emotional journey that continues today.
Since a cruise marked the beginning of my experience, it seems fitting to describe my voyage using islands to represent the stops along the way.
Just keep in mind that these “islands” are really just giant floating docks in the ocean (because even on an island, the rocking sensation doesn’t go away).
Also, many of these islands I visited simultaneously. So yeah, MdDS is weird.
My first port of call is Question and Confusion Island. This is where I stumbled around looking for answers.
“Why am I rocking all of the time? Am I moving? Do you see me moving? Why does it feel like the floor is moving when I’m walking? Why am I bothered by lights, crowds, people moving quickly, patterns, small spaces, grocery stores, loud noises … everything? Why am I so tired? Why can’t I concentrate? What is this? Why don’t I feel it when I’m driving? Is there a cure? When does it go away?”
Naturally, the next stop on this journey was Medical Island. After searching for my symptoms on the Internet, I was pretty sure that I had MdDS but a true diagnosis involves ruling out more common conditions.
I started exploring the island, only to find out I was dropped off without a real map (I think mine was a pirate treasure map printed on a child’s placemat). This island is marked by hundreds of paths carved out of the dense jungle. Oddly enough – as I learned later – the same path can lead to different results and answers for different people.
I’ve explored almost all of the island looking for help: my primary care physician, an ENT, a neurologist, a regular chiropractor, a cervical chiropractor, a physical therapist, a vestibular therapist, two naturopathic doctors, two eye doctors, other specialists, and more. I’ve had hearing tests, a VNG, multiple MRIs, X-rays, extensive bloodwork, and various other tests.
The good news is that I don’t have anything that’s going to kill me. The bad news is that I have MdDS and nothing I’ve tried in terms of treatments or medications has really worked for me (yet). But Medical Island has helped many, so everyone should consider a visit (just maybe don’t buy the season pass like I did).
While I continued to search for medical answers, I found myself regularly visiting Symptom Surprise Island. This is where I started experiencing different symptoms or varying levels of symptoms. My pattern sensitivity went away but was replaced with a strong gravitational pull sensation (feeling like you are magnetized and being dragged forward, backwards, or sideways). My crowd and noise sensitivity was replaced by tinnitus (a lousy trade).
Along with the actual symptoms changing, I also experience fluctuations in the intensity of my symptoms. Good day. Bad day. Calm waters. Rough seas. It’s like someone giving me a different dog to take care of every day. Some days it’s a nice dog that mostly sleeps at my feet but regularly pees on the carpet (so I remember he’s there). Other days, it’s a mean dog that follows me around all day barking, growling, and biting (and still peeing on the carpet).
The worst of my islands comes next, and that’s Emotional Island. Dealing with MdDS isn’t easy, especially early on, when I didn’t know what it was or how to cope. I cried, I screamed, I felt sorry for myself. I wish I could say I don’t do any of those things anymore, but I can’t. I still have difficult days and times when I feel sad and frustrated. I try not to visit this island much (or for very long) as it’s not a good place to be.
Annoyed Acceptance Island is the final stop of my MdDS cruise (so far). This is where I spend most of my time now. I accept that MdDS might continue to be part of my life going forward. I’m not happy about it, and part of me is scared by that idea, but I know I’ll manage somehow.
I try to keep busy and distracted, and I look for ways to tune out MdDS whenever possible. My symptoms are not as bad as they were in the beginning, or I have just adapted to it – I’m honestly not sure.
I’m happy to see some of my friends reach Remission Island, as this gives me and others real hope. I often wonder if I’ll ever get to join them there (or at least visit). Every day that I wake up to the waterless waves, I remember that I’m not there, and I wonder if I’m drifting farther away from that destination.
Living on Annoyed Acceptance Island is not where I ultimately want to be, and I struggle sometimes to turn lemons into lemonade. So far, I’ve just made lemon pudding (and I don’t really like lemon pudding that much).
Of course, I would rather have my old life back, but since I don’t get to choose, I’ll keep trying to make the most of this one.
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