How I've Grown in My Journey With MdDS


For those who aren’t familiar with Mal de Debarquement syndrome (or MdDS for short), it’s a rare neurological condition usually arising after a cruise, flight, long drive or any other activity that involves sustained motion for a period of time. Sometimes it can occur spontaneously. What causes it is not very well understood and there is no cure and very few effective treatments available. The disorder usually doesn’t respond to typical treatments for balance disorders and won’t show up on most diagnostic tests. The characteristic symptom is a constant rocking, bobbing or swaying sensation like one is on a boat at sea. Those with the condition can also experience loss of balance, reduced mobility, difficulty concentrating and focusing, memory problems, chronic fatigue, blurred vision and sensitivity to light and sound. These symptoms can cause significant impairment and disability in the lives of those affected by the condition. I’ve been inspired to publish this writing because June is MdDS Awareness Month.

stop the rock! June is MdDS awareness month. spread the word.

The symptoms affect me constantly on a daily basis. I am presently unable to walk without a cane and am experiencing significant challenges with my short-term memory and concentration. I’m also dealing with chronic fatigue and have a much lower energy level than before I became ill. As a result, I’ve not been able to work or have much of a social life outside of my little one bedroom apartment. I’ve been spending a great deal of my time writing and reading about topics of interest. I’ve developed an interest in learning about chronic illnesses and listening to other people’s stories. This has led me to reflect on my own journey and inspired me to share a bit of my story. I’m going to talk a bit about the road to accepting my condition, some of the lessons it’s taught me and how grateful I’ve become for the blessings it’s brought me.

 

I have many thoughts and feelings surrounding my diagnosis and my declining health, mobility and independence. Going from a relatively normal, temporarily able-bodied, taxpaying 26-year-old to having to rely on many people, resources and adaptive equipment to help me meet many of basic needs has not been an easy ride. At times I feel sad because I’m having to grieve the active person I once was. I’ve had to come to terms with the fact that there’s a high chance I more than likely will never be the same and I won’t be able to do many of the things I used to enjoy doing. I’ve had to grieve the loss of friends who have become fed up with me and who are not able to handle the major changes that have been going on in my life. That really sucks, but I can’t spend time blaming them. Some people just won’t get it and that’s not my fault, nor is it my responsibility to make them change their minds.

On a happier note, becoming sick has also been a blessing of sorts and has brought many gifts into my life. It has forced me to get out of my comfort zone and to be OK with asking others for help and relying on people and resources I have no control over. This is something I have struggled with for many years. For as long as I can remember, I’ve had trust issues and have built a brick wall around myself, refusing to let anyone get to know the real me. I wasn’t a very happy person. I felt like life was all a play and I was the lead actress. I wore a costume and played the role of my character whenever I was around other people. It was exhausting having to keep up this act all the time. I was very lonely inside and turned to other not-so-healthy outlets to fill the void in my soul.

Nowadays, I have no energy to act anymore and, as a result, have had to put my costumes back in the tickle trunk and resign permanently from that job. In doing so, I’ve had ample opportunity to get to learn to trust others and become comfortable with being vulnerable. I’m forced to be authentic in my day-to-day life. As a result, many of my relationships have improved tremendously. I’ve actually been able to talk about my feelings and opinions and share with others who I really am inside. I don’t feel the need to wear a costume or to hide behind my brick wall much anymore. It’s liberating.

Throughout my rocking, bobbing journey with MdDS, I’ve learned more what’s really important in life. I have a limited amount of energy and as a result, I don’t have much to spare to fixate on negative things and mean people any more. I spend more of my time appreciating my loved ones and on putting my time and energy towards things that make me happy instead of worrying about and trying to fix the things that drag me down. Whenever I have the energy to do something enjoyable, I get much more out of it and spend the time being in the moment and absorbing everything about the experience. Before, I would spend time critiquing everything and complaining about what was wrong with it or I would be in my own head worrying about something I’d done wrong in the past or thinking about future plans I had. I rarely do that anymore. I feel I’ve been able to grow as a person and become much more humble and mature than I was before I set sail on the MdDS boat.

Maybe someday I’ll get my land legs back, maybe I won’t. Because my disease is so rare, not much research or funding is delegated towards it. Hopefully in the future a cure or effective treatment is discovered and I can get back to being the active, energetic person I was. I’m going to have to learn to accept my circumstances, whatever they may be. I’m grateful for this new lens my chronic illness has me viewing life through. I’m truly grateful to be alive and to be so blessed to have the amazing, supportive friends I have who understand and accept me for who I am today. They are true gifts and I will never, ever take them for granted. Thank you friends for going for a cruise on my boat with me.

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Thinsktock photo via Victority.

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