My name is Rena.
I have been suffering from Mal de Debarquement Syndrome on and off for over five years. My first bout started after a flight home to Canada from the UK. I caught a nasty cold on the flight, and after weeks of feeling off kilter I went to my doctor to complain in that my “jet lag” was going on for too long. After months of typing “dizzy” into the Google search bar (which was futile), I typed “bobbing and swaying.” Bingo! I finally found a site that matched the symptoms I was experiencing.
My doctor had never heard of Mal de Debarquement, and besides, after 2.5 months my symptoms went away. But after receiving literature from the MdDS Foundation, I was able to get my doctor on board with my care. My ENT ordered a dizzy test that ruled out vertigo. An MRI revealed bulging discs at my C4–C7. I’ve had several car and cycling accidents over the years that have impacted my upper back and neck, and I wonder if there’s a connection there. I am also in menopause.
I am grateful to have found the Facebook forum for those affected. It’s reassuring to know I’m not alone in this syndrome and that I’m not just “going crazy.” I am also grateful for this website, where I hope that my story might add some clues to possible causes.
I have not been in remission for over three years but my hope is to keep looking at the bright side, especially when this condition really drags me down. The hardest part of living with MdDS has been the “slowing down” part. Every movement is braced for. Stairways are slow going. I expend so much energy staying balanced that I get exhausted easily. My house has never been in such a disarray. It’s the worst when I feel like I’m drunk and hungover at the same time. I can no longer remember what it feels like to feel still, and some days when I feel like I’m never going to escape this condition, I am pushed to tears.
But when I’m really, really down… I tell myself that I have a superpower.
My superpower is that I am able to feel the wobble of the earth’s rotation, and that’s why I feel the way I do. It’s silly, but sometimes it’s a bit of comic relief that pulls me from despair. Self-empowered, I have managed to set a new course in my teaching career. I’m teaching part-time and there’s just enough days for me to recover a little bit. What about you? Have you figured out your superpower?
I’m happy when I hear a ‘rockers’ is able to get some of their life back. MdDS stole my world, put me in bed, and has me searching for a superpower other than surviving the 24/7 bumpy ride for over 10 years. Thank you for sharing. My superpower is not giving up and accepting change. The increased compassion for others and Gratitude for what I do have. Namasté
Now is the time
Oh my goodness. I can so relate to your perspective of this as your superpower. From the very beginning I have felt that whatever was causing this it had to do with being tuned into the electromagnetic forces ever changing as the earth is turning through space. Before I knew this was MdDS I kept saying to my partner that I had a new relationship with gravity, having something to do with the earths rotation. Silly? Magical thinking? Comic relief for sure. Maybe this is a gift. I know that I am learning to do everything much more mindfully and that I have a lot more compassion for other people than before. Maybe they have a hidden disability or superpower.