For six years, I’ve been writing about my dizziness. Writing about the songs the Lord has given me. Writing about praising Him through it all.
I’ve recently discovered what I think is a diagnosis for my dizziness/off balance feeling. It describes my symptoms precisely and accurately. I have not been officially diagnosed by a doctor, but I don’t think I will try to be. For the simple fact that it will not change anything. It is a diagnosis given after everything else has been ruled out. There is no cure or magic treatment. And I’ve already been doing some of the things that have helped others who also suffer with this illness.
Mal de Débarquement Syndrome or MdDS
In a nutshell, directly from the website:
Mal de Débarquement Syndrome (MdDS) is a neurological disorder of perceived movement manifesting as a constant feeling of rocking, bobbing, or swaying which seems to be alleviated in passive motion such as riding in a car. This is an important diagnostic feature of the syndrome…Also known as Disembarkment Syndrome, MdDS most often develops following a cruise or other type of water travel; exposure need not be sustained or lengthy. MdDS has also been reported following air, train, and automobile travel; and less commonly after repeated elevator use, walking on docks, from the use of virtual reality equipment, or practically any motion experience….While MdDS most commonly presents after travel, for some onset appears to be spontaneous, without a motion event…MdDS may persist for months to years, and there is a likelihood of recurrence after an initial onset….In addition to the rocking, bobbing, and/or swaying, there are many secondary symptoms. The sensation of motion is often associated with anxiety, fatigue, difficulty maintaining balance, unsteadiness, and difficulty concentrating (impaired cognitive function)….The symptoms tend to be more noticeable in enclosed spaces or when attempting to be motionless (sitting, lying down, or standing in a stationary position).
I am in a Facebook support group with over 5000 other people who are suffering with the same symptoms. And I know that it seems like every day is international day of “something” and every month is “something” awareness month, but June is MdDS awareness. For 6 years, I’ve been unaware. Unaware that there was a condition. Unaware that I wasn’t completely alone. And my blog isn’t far reaching. But if it reaches only one who is struggling unaware too, then I’ll gladly share. (Thank you to my friend Mary, who also suffers from this and shared the website with me.)
My symptoms seemed to have started spontaneously, possibly onset by extreme stress. I became dizzy in 2015 and was left with a constant feeling of motion. Sitting, lying down, standing. It was there in any position. Driving/riding in a car was the only thing that alleviated the symptoms. I have had to walk holding onto someone or something. I can’t close my eyes and stand still. I lose my balance and fall over. Wide open spaces, like parking lots, trigger my unsteadiness. Enclosed spaces do as well, like a shower. Too much visual stimulation makes symptoms worse. Scrolling, looking down to type or read. Crowds of people, restaurants with competing noises, grocery store aisles, clothes shopping all make it difficult for my brain to process. I have experienced complete brain fog. Anxiety, depression, panic attacks. Extreme fatigue. Concentration problems. Cognitive issues. Sometimes my head feels heavy, sometimes I feel pressure in my head and ears. I have tinnitus. I have ran the gamut of symptoms, emotionally, physically and, yes, I believe even spiritually. I have often felt an increase of symptoms any time we’ve been asked to sing, I’ve been asked to speak, or any kind of work we try to do for the Lord. I can almost mark it down every time – my symptoms will get worse. Stress is also a HUGE factor.
3 years into this, I started seeing a NUCCA chiropractor. Which, as I’ve read, is an effective treatment for most people with this syndrome. I also do physical therapy which is shown to reduce symptoms as well.
As stated above, there is no known cure yet, but some people have been known to go into remission. This lasts anywhere from months to years. But symptoms have also been known to come back.
This syndrome is invisible. If you see me and don’t know me, you’d never know. If my symptoms are very bad and you are observant, you might see me holding on to a wall for balance, I may be quieter in a crowd. I may walk away or stand up from being seated for too long. Only those closest to me know that I still struggle every minute. It is extremely tiring trying to survive the things I have to do. Every minute my brain is constantly trying to compensate, trying to figure out where my body is in space. Almost like my brain doesn’t know where my center of gravity is anymore. It’s a fight to sit through a choir service and play the piano while trying to stay upright. It’s a fight to sing in church with my family. It’s a fight to sit still for more than a few minutes, period. It’s a fight to walk through a grocery store and not just leave my cart and walk away. It’s a fight to stand up and cook a meal. It is futile to make sure everyone knows when I’m feeling bad. So sometimes, I don’t commit to things. Sometimes I can do things that at other times I can’t. Sometimes I laugh. Sometimes I do have a good time. Sometimes I enjoy things that are still hard. Sometimes, I fold up and weep over the things I’ve lost. Sometimes I question why God doesn’t just reach down and heal me. Sometimes I wonder where He is and what He’s doing. Sometimes I wonder why it has to be this. Sometimes I’m thankful it’s not something else.
Maybe some people have thought I am making most of this up. Using it to my advantage to milk sympathy or make my songs seem more real because of an imaginary illness. People have misunderstood. People have gotten upset that this is how God has chosen to use my life. Maybe people have thought I’m crazy. A precious handful have been there for me through it all. And I’m forever grateful that the Lord has weeded out who needed to stay and who needed to walk away.
Some days I am hopeful. Some days I feel hopeless. But every day, Jesus has been there. In the ups and downs. In the joy and heartache. In the hard and not as hard. In the messy and in the beautiful. And because He has, and always will be, I KNOW there IS hope. Regardless of what I think or feel.
A preacher said last night that you should always have scripture to back up what you do or don’t do. I always claimed Lamentations 3:22-23 as my life verse.
I have not been consumed because of His mercy. His compassions have not failed me. Every morning that I wake up, even when the sun doesn’t shine and the pain has left the darkness intact, there are new mercies. New compassions. He has proven that over and over and over.
My “dizzy” life verse, though, has been what I go back to every time I want to give up. Every time I think I can’t share my songs anymore. Every time I think there is no purpose.
He gives the songs. What He does with them is up to Him. But I made Him a promise. I WILL praise Him with each one He gives.
I have made mention of this song I wrote a couple months before my dizziness hit. I’ve had to live out that song in my life several times. And this is just one more.
So one more time, I want to make sure you know. I want to make sure Jesus knows.
Even if, You never move this mountain
Even if, I don’t see how I’ll make it through
Even if, You never lift the load I carry…
Lord…Lord, even when it’s hard. Lord, even when I don’t understand. Lord, even when I don’t see you working. Lord, even if I still have this illness until I see You…(And what a day I’m looking forward to with each moment that passes!)
I’ll still love you.
For more information on MdDS, you can go here:
I wrote this straight from my heart without much thought for grammatical detail or eloquent wording. I could write for days on what this has done to my life. I could write for an eternity on what God has done with this through my life. Just know that life is sometimes hard (for everyone). But Jesus is always good and faithful.