Why my story is called, “The struggle is real.”
MdDS presents many challenges, so I have more than one answer to, “What’s the hardest part about it?” I am a very active person, and living with MdDS has proven difficult. But I think above all, it’s that Mal de Debarquement Syndrome can be debilitating, and it’s frustrating as we look fine on the outside but are silently suffering.
I’ve spent a lot of money on doctors and spent all kinds of hours on things that didn’t help. Whether to spend more money and time on something that might help has truly been a struggle. Not knowing if you can continue to work has been scary as well.
Family forgetting that you have a disorder because, again, you look fine. They want you to do all the things that you were able to do before and don’t understand how difficult things are for you now.
But things have gotten better.
Staying active is the best thing but also making sure I get rest and knowing when to stop; having a good balance. And do not forget: Your mental health is so important to take care of. Also I found MdDS Friends! It’s been helpful to find others sharing and can understand what life with MdDS is like. Also I think just pushing myself and keeping a positive attitude has helped. I can sit back and not do anything and feel sorry for myself, or I can be a part of life and push myself, to a degree, to be involved and recognize that there are others with far worse conditions than MdDS.
If you’re struggling and feel unseen, too, I see you! And I hope you can find some happiness in the midst of the storm. Right now, there are not many places that have knowledge or know how to help us. But with increased awareness, I have hope that there will be more help for us in the near future.
Dawn, motion-triggered
Age at onset: 50s
MdDS Awareness Month 2024 has been about making sure MdDS patients are seen and heard. Over a dozen told they stories in their own voices and proved that unseen illness doesn’t have to obscure or define you. With these stories, visits to mddsfoundation.org, a warehouse of MdDS information and resources, increased 20%. If you missed any, you can find the Faces of MdDS stories in the Blog section. With recent website improvements, the blog can now be found under the new READ OUR NEWS+ menu on our home page.
While June is ending, it’s never too late for you to be seen and heard! Don’t suffer in silence! As MdDS becomes more widely recognized, local TV news or paper have increased interest in your story, especially if you tell if from your local perspective. If you found a helpful doctor nearby, ask them to be a patient advocate and to support you in your endeavor. Find inspiration in others’ MdDS media coverage here: mddsfoundation.org/media.
On behalf of the entire MdDS community, thank you for reading all the way to the end and for supporting the MdDS Foundation.
Something else I have noticed just in the last few months, my near vision is getting worse, I was using 1.25 readers and now need to use 1.50 even to read my computer screen.
This is a horrible way to live! Imagine spinning around with your arms out for at least 50 times and then walk straight ahead without falling down or vomiting (yeah right) It’s bad when you can’t even use a walker.
I have lived with this condition for 21 years. It all started after a plane trip back from Florida. Nothing helps, tried many things, doctors, PT. My muscles are always tense in order to support my balance and help prevent falling. I’ve just learned to live with it. Praying someday someone will find true help for this rocking and swaying condition.
Like so many other neurological disorders, MdDs is unseen. You look fine, but inside you’re a dumpster fire! I have been living with the disorder and its effects since 1978, and it has impacted my life in ways that I can’t describe.
My heart goes out to everyone who suffers with this malady, and hope someday there will be a cure.
Bob S.
I’d like to share some of these on facebook so my friends and family might understand better and know it’s a real thing 10 yrs now and no remission..
Thank you for wanting to share and foster a better understanding of MdDS, Sharon. All content on mddsfoundation.org is shareable. Simply copy the URL of any post or page. Then paste it into the field on Facebook where is says, “What’s on your mind?” on Facebook. And, of course, you can paste it into the body of an email for friends who are not on Facebook.
All of posts our Facebook page are shareable, too. Just use the Share icon
on any of our posts here https://www.facebook.com/mddsfoundation.org. Thank you!
It is so helpful reading how others are coping with MdDS. I was diagnosed over 20 years ago. Been through PT, treatment for “the crystals”,etc. Clonopin has helped the most and I’m trying to reduce my dosage because of the drowsiness. I stay active and do all my usual activities, but it’s getting harder as I enter my 70’s. I thank God for giving me a supportive family and helpful family medical providers.
I have been reading a lot about Upper Cervical Chiropractor’s who have been studying about this problem, and have found out that this may be caused by more things than we can imagine. When I delve into my own history, I think mine may have started from a fall off a ladder in the mid 1960’s, and on and on with other things. The most prominent occasion and recent was in May 2022, I was given Zoloft by a doctor, took it 5 days and passed out while reaching into a cabinet, fell over and hit the upper right forehead on the counter top, fell backwards on the wood floor and hit the center of the back of my head! That was the real start for me. I also have disc degeneration in my lower 5 cervical disc’s on the right side, where the ringing in my ear is. I did have nerve ablation on the right side of my cervical spine a year ago and this has helped some with the pain, but nothing else. Still bumping, bobbing, swaying!