My MdDS began in December 2012. I didn’t know what it was and kept getting misdiagnosed. My instinct was that MdDS is not only caused by being on a cruise, it could have been brought on by playing for long periods of time on the Nintendo Wii with my kids. I knew that playing some of those games tricked my brain into thinking I was actually participating in those activities for real. Often I would feel motion sickness and need a break, but would get right back to playing. My instinct proved correct when I was officially diagnosed during intervention treatment in New York in May 2015.
MdDS has taken away so many joys in my life. I was an avid hiker and enjoyed Zumba, but with symptoms at the higher levels almost every day, it is not possible for me to exercise like I used to because some days simply walking through my house takes all the energy and balancing skills that I can muster.
My children have had to miss out on many things because of me or had to go places and not have me with them because doing so would heighten my symptoms. It has also been stressful on my marriage as my husband has to do the things he usually does as well as take over many things I once did with ease. Household chores like vacuuming and cleaning counters is out of the question because I feel I will fall and actually have fallen from time to time. Home-schooling my boys is very important to me, so even though it is really difficult, I manage because it is necessary.
I still do nature photography but I stopped working as a boudoir photographer because I was afraid I’d fall over on a client. My kids and my husband have been wonderful and supportive to me and without their help I would be in a much darker place.
Shopping is a two-person event now. Simple things like taking a shower or having a bath are now something I dread because I feel the shower stall is rocking back and forth while I am in it. The bath water moving makes me feel like I am on a raft in the middle of the ocean and it doesn’t feel good. I’ve learned that I need to depend on a cane or a wheelchair in order to take part in things I love. It was a very, very difficult thing for me to accept that. MdDS has been the most challenging thing for me both physically and emotionally, and it has stripped me of most of my independence as well as my self-esteem. It has completely changed my life.
Because I was dismissed by many in the medical field, I feel it is key to spread awareness about this illness.
All doctors should be made aware of it and for those who are aware, they should understand that MdDS is not always caused by being on a cruise or a boat. That is one of the reasons why I was misdiagnosed so often. I help the MdDS Foundation as a volunteer, because I feel it is key to spread awareness about this illness and want to help in any way I can.
Age 37 at onset
Trigger: Nintendo Wii?