June is MdDS Awareness Month....Stop the Rock. To support research and funding please visit www.mddsfoundation.org and donate today. You can also buy shirts as well as check out any information regarding this syndrome.
It has been a year. A year since my favorite ENT said, over the phone mind you, "No Sara, you don't have Vertigo. You have Mal de Debarquement Syndrome. I'll see you in my office so I can officially diagnose you and we can figure out some ways to try and help. I'm sorry but there is no cure, and no treatments for it except to try and help with symptoms. It hopefully will go away on its own. It could be a tomorrow, a week, a month, a year. We just don't know."
A devastating feeling knowing that you are stuck on a boat and you haven't even been on one. I joke my friend and tell him all the time that I will never forget his wedding anniversary because it coincides with my diagnosis.
But over the last year I have come to learn a lot about myself and my family and friends.
i felt like rock bottom had hit last summer. I spent many a days laid out on the couch or even in bed. I had to have items in a basket set close by because when I was home alone it was the only way to get what I needed. I couldn't do much of anything. Reading was a negative because the words move. Cooking was a big NO because I swayed to much for it to be safe. Movies flashed too fast. Big crowds scared the living day lights out of me. I would have to crawl to reach my kids to tuck them in, I would have to have help in and out of the shower and even sometimes with showers. I learned to love my floors because, well, I spent a lot of time laid out on them. I couldn't walk in tiled rooms or stores for that matter. And anything with a pattern was definitely not a good thing. I lost my independence which was the hardest for me.
But I have coped. I've learned to retrain my brain to certain things. I still have a long way to go, but I'm pushing through and moving forward. I try not to let the bad days set me back too far. I try to stay positive and have a positive frame of mind. I have gained some of my independence back. I still miss the old me, but what I've learned is that this syndrome has made me so much stronger. I'm a fighter, and I have fought for the last year to get to where I am.
I have an awesome support team. My mom, sister, brother, my cousins and grandparents, aunts and uncles, my in-laws, my kids but most definitely my husband. Even my friends who live miles, states even away, they are there to listen to me vent, complain, but also to push and motivate. And then the support groups. Somewhere to go and talk to people who you've never even met, but you have a common bond.
June is a good month. Not just because it is Awareness Month but also it is the countdown to me leaving my 20s behind and entering my 30s. So I've set myself up for a goal this month.
My goal this month is to write about what I have been able to accomplish each day. I will post for all 30 days of June with pictures to show that MdDS will not bring me down. I will continue to fight. I have been fortunate enough to have good enough days to do this and set this goal. I know there are others who are less fortunate so I do this for you too, in hopes that one day you too will have a good symptom day.
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