05/30/2024
⭐⭐⭐JUNE IS AWARENESS MONTH⭐⭐⭐
I'm in my 5th bout of Mal de Debarquement Syndrome since my boat ride started in 2015. I like to believe I handle it like a champ nowadays but even still I have days where I bury my head in my hands, and try to will it to STOP! It can be so frustrating.
Since contracting it again while having COVID at the end of December, 2023, I haven't been able to work an 8 hours day. The exhaustion from my brain searching for stability has me hitting walls. I often have to run out and sleep in my van for a bit, and I pull over and sleep on the side of the road often. It's all I can do! It's truly a disability in that way because I can't work enough to afford life. That's really hard.
Anyway, please keep sharing the letters "MdDS" and know that this rocking/bobbing/swaying syndrome exists. Someday you will help someone find a diagnosis. It's still that rare--many medical professionals haven't heard of it.
And if you can spare a donation for research, the thousands of us in the FB support group (many who have been on their boat rides for decades and have no hope for remission) will thank you.
Each of my bouts have lasted approx. 11 months and I plan to get rid this beast again. I want my ENERGY back, and mental CLARITY and BUBBLINESS. For now, I'll continue to focus on it day in and day out, no caffeine, healthy eating, watching out for triggers, stopping to ground and balance if ever I drive an hour or more, or go on a boat, a carnival ride, or a trampoline. I will be fighting to get 8, 9, or more hours of sleep (which is less nice than it sounds--this time spent sleeping always replaces something else).
Loving support to all my MdDSers out there. ❤️
https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.mddsfoundation.org%2F%3Ffbclid%3DIwZXh0bgNhZW0CMTAAAR1qsSOfECrpcXkYgP4HOig8xi4w1dmEF57b3EqAaaajs9AHQBO74Pnr81I_aem_ARTuh3gePv4uf4OeOBfajGsJCJmwe3mZICnegUn1i8GRXSG1q7NSWMe3I03TlpXMCvRjHbRD5pdatqDZxpwzj6ut&h=AT3BuaWD7ny3K-R7svSMnoSyjbXtRFc4gORkceS4coOXR4conXnNu1VbeLhBQ-JBU_xkNc-cjmbCgSeIXY8cVKijCrljBLeBpYL0GEVrfM0qgz0QXGpqGRyT-2QY9Tv91Y4
Mal de Débarquement, Disembarkment or Debarkation Syndrome is a disorder that leaves patients with a constant feeling of movement, as if on a boat. The MdDS Foundation advocates for and seeks treatments to end the suffering from MdDS. Learn more!
