Living with Mal de Debarquement Syndrome: Challenges and progress in everyday life

Living with Mal de Debarquement Syndrome | Retropulser.comJune is Mal de Debarquement awareness month so I’ll be focusing on my experiences with this rare syndrome during the five weeks. This is my fifth in the series. 

As I mentioned in my last post, the past six months I have been making slow but consistent progress. Starting in May, I began feeling like I was getting my life back. All of a sudden, I had the energy and ability to focus on projects and have some sort of social life.

Here are some areas that I’ve made significant progress with my MdDS in the past few months:

  • Standing. This varies dramatically depending on how tired I am. Most of the time I can stand and have normal conversations with people.
  • Sitting. As long as I have a back rest and my seat doesn’t slope back, it’s perfectly normal.
  • Swimming. I got in the river on Saturday and swam for a few minutes. My brain didn’t freak out at all.
  • Running. Starting to run regularly, even maybe some couch 2 5k will be happening.
  • Balance. I was pretty impressed with how comfortable I felt navigating the rocks at the river last weekend. I didn’t feel unstable at all.
  • Wearing heels. I wore heels to church a few weeks ago for the first time in almost 2 years.
  • Looking down.
  • Movies. I’ve gone to the theater more times in the past 6 months than I have in four years.
  • Reading. Huge sigh of relief here! I can read the majority of books and my phone apps easily.
  • Walking on the sand. Didn’t bother me at all this month at the beach.
  • Campfires. It used to be too much movement, but not anymore.
  • Playing basketball. I can still shoot some hoops!
  • Riding in the car. I can now sit in the front passenger seat without getting sick, and I’m making progress on being able to sit in the back seat.

Here’s what some of my current struggles look like:

  • Standing. If there’s too much visually going on, then I start rocking and get tired quickly. It helps if I spread my feet, but I still get tired.
  • Swimming. It felt good at the time, but I was dizzy once I got home and had to rest all evening.
  • Running. I’m mentally exhausted after running, in the best of ways. I just need to lie down for a few minutes to let my brain catch up.
  • Bending over/looking up. I still don’t find these comfortable at all. But I can do them, my brain just fights me and I have to push through it.
  • Stress. Is not my friend. I have to be careful because if I push it and feel too rushed, I get dizzy. My tolerance is increasing though.
  • Movies/tv. I still have to close my eyes if scenes with a lot of movement or panning are happening.
  • Reading. It’s still difficult if the text hits my eyes wrong or the page is too wide for my eyes to track comfortably.
  • Walking in the dark. If it’s dark and the ground is uneven, I have to walk very slowly.
  • Playing basketball. It was overwhelming and I felt really slow, but I didn’t get dizzy at all.
  • Riding a bike. I’m not sure if this should be on here at all, as I’m not sure if my functional neurologist would ever give me the okay on it. But it still freaks my brain out to think about doing it.
  • Riding in the car. It’s still not easy for me to ride in the backseat.

Looking at this list, it’s easy for me to feel a little discouraged yet also extremely grateful. I know that there is more progress to be made, but I firmly believe that I will keep making it, Lord willing! There will always be things that will be hard, and I’ll probably be pushing boundaries for a long time, but that’s okay. I don’t mind the challenge most of the time!