Still on a boat that’s never still

chair

There are things you may not always notice, but have become part of my routine.

I don’t tell you as much anymore, but I’m still rocking.

I don’t cry every day, but I’m still kind of sad.

I’ve stopped talking about it mostly, but it’s still there. The rocking you usually don’t see (but I always feel).

It’s still with me. All day. Every day. The internal swing set is still going. Back and forth, up and down. Always moving. Never still.

My life is still being lived on a boat, and it can feel different from day to day, or even hour to hour. Sometimes there are light waves that I can mostly tune out, and sometimes there are stormy seas that can knock me off my feet.

Eventually I got tired of being “that” person. The one who complained all the time. The one who didn’t seem happy. The person who didn’t seem to be engaged or interested.

So as time went on, I got a little quieter.

My silence doesn’t mean it’s gone. It just means I’m coping and trying to live my life. But it can be really hard sometimes. There are moments of complete despair and frustration. Times when I struggle to prepare a meal, sit at a table, follow the story you’re telling me, or write a sentence that makes sense.

You may wonder why I’m walking slower, and maybe you even ask me. “Just tired,” I might say. I’ve stopped trying to explain how I’m walking on a trampoline. I know it doesn’t make sense and sounds bizarre. So instead, I’m “just tired,” and usually that’s true as well.

There are things you may not always notice, but have become part of my routine. How I request a booth at a restaurant and select places with dim lighting. How I reach for the handrails everywhere I go. How I avoid certain stores and places. How I struggle to clean, cook, run errands and exercise. And how I pass on some outings and activities I would have done before.

When the rocking gets to be too much, sometimes I need to cry. Please don’t tell me I shouldn’t. Let me cry. Let me rant. Let me have a short pity party. Crying helps me cope. It doesn’t mean I can’t deal with it – it just sometimes helps me deal with it.

When you see me holding my head, clutching the table, leaning against a wall, gazing off into the distance, or just being a little quieter, it means I’m struggling. Lend me your arm. Give me a hug. Help me if I ask. Or give me some time to myself.

So no, it hasn’t gone away. I just don’t talk about it as much anymore. There’s nothing new to say about it really.

I try to focus more on other things now, and that’s how it should be. There’s so much I love about my life and this isn’t going to stop me from living it. I’m coping, I’m accepting, and I’m moving forward. I just wanted to let you know that it’s still there.

I’m still on a boat adrift at sea, searching for a shoreline that hasn’t appeared. I’m still on a boat that’s never still.

Sheryl Soffer

 

This entry was posted in Faces of MdDS, Uncategorized. Bookmark the permalink.

53 Responses to Still on a boat that’s never still

  1. vidya says:

    Omw.. exactly how I feel. . How do you cope. I feel I lot of dizziness n giddiness on a daily basis for many years now. My family are fed up n think Im making up excuses as I can’t even take up a job.

    Like

    • sheryl1815 says:

      Vidya, So sorry to hear that you don’t have the support you need. My family is mostly supportive, but it gets old, especially when I can’t participate in everything. It’s still a great life and and thankful for what I have. I hope thing get better for you. They need to know that you didn’t choose this and it impacts how you live you life now. Take care of yourself and don’t feel bad. I’ve been doing better focusing on the positive!
      Take care! Sheryl

      Like

  2. Nancy Strongin says:

    Thank you Sheryl for a well written column. I’ve had Mal de Debarquement since Sept. 2010. My friends and husband are amazed that I’m able to golf, especially putt. I just wait for the land to stop moving for a second and hit the ball! Can’t give up on living life to the fullest. I’ve noticed that my legs begin to fatigue more quickly. Wonder if it is from trying to balance myself all day?

    Like

  3. Heidi Hayward says:

    Thank you, Sheryl..the tears were streaming because it was me you were describing. I have had it for 6 years. Been to so many Doctors I lost count. Never heard of this type and accidently stumbled upon this article while once again researching what “this never ending vertigo” could be…I count my blessings through it all, but not without a big struggle.. I have an amazing husband who supports me all the time.. thank you for sharing this.. means a lot.. The one line I always get when people ask me how it’s going with the vertigo and I say “not so good”.. they pause and say “well, you look good”.. as if that has anything to do with it and helps me feel better.. sigh.. keeping the faith.. #nevergiveup…

    Like

    • sheryl1815 says:

      Hi Heidi-
      I am so happy that you found this story and are now connected to the Facebook group! I was lucky that I was diagnosed so quickly. I have the classic post-cruise variation (six hours after stepping off the ship). I think it’s much harder for those who just wake up with it one day. The few doctors who know about often associate it with a cruise or boat ride. As you’ve probably know now, it can come from another type of motion event (train, car, plane, treadmill, etc.) or just come on spontaneously (no motion trigger). I’m glad that writing about my experiences might have helped you find some answers. I’m happy to hear that you have great support and are keeping positive attitude. Best to you!
      Sheryl

      Like

  4. Antrice Minor says:

    OMG! This captures so eloquently and articulately what I have been experiencing for the last week and a half. Gonna pass out flyers of it so I don’t need to keep explaining. I’m teary eyed reading your description of it, as I thought no one else on earth understood the horror that I’m going through. People are saying it’s a virus, flu, etc. I don’t know what it is, but I know I just want to feel normal again. I’m just learning that this happens to some people after disembarking a cruise ship. Is that when yours began? Forgive me if you answered that already. Mine began after using Ambien approximately two weeks ago to help me sleep. Im not sure if that’s just coincidental or what? Bless you for writing this and sharing! Being understood is the first component to confronting and pushing through this horrible…horrible…misunderstood medical issue. God bless you! Oh…do you happen to suffer from tinnitus as well (ringing in the ears?)

    Like

    • sheryl1815 says:

      Hi Antrice-
      I’m sorry to hear that you may have this. If you’ve only had a it a couple of weeks, it may just go away (I hope so). The foundation is a great resource for information, and I would suggest joining the Facebook group below. There are a lot of people there who can offer support, and you can scroll through past posts and search topics for more information. Hope you are feeling better soon.
      https://www.facebook.com/groups/MdDSfriends/

      Like

    • loismcr says:

      Hi Antrice,
      I’ve had this condition for almost 5 years now, and I know first hand how difficult it it to describe it…particularly since it’s so rare that few people even know it exists, much less what it can be like. As in your case, mine just started spontaneously on waking up one morning. The best treatment I know of is available through Dr. Dai at Mr. Sinai in NYC. I tried it, but was warned that it can be less effective for those who start rocking spontaneously, like us. When I was there a year and a half ago, I did feel a great improvement, but unfortunately that didn’t last. Every case is different, though, so maybe it would, for you.

      In any event, before going to Mt.Sinai, I wrote a poem to try to explain the way this syndrome affects my life, which the doctors there asked permission to show new patients who have difficulty explaining how they feel. (By the way, my case involves experiencing 24/7 music in my brain, but that is NOT tinnitus, but rather regular musical notes).

      Good luck, Antrice, and at least take comfort in knowing that you’re not alone.

      Like

      • MdDS.BDF says:

        With respect to readers with visual sensitivity, the blog moderator has edited Lois’ comment to limit screen scrolling. Her poem will be published separately as a blog post. You may subscribe to this blog and receive an email alert when the poem is ready by clicking/tapping on the Follow button at the bottom of your screen.

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  5. Michael T Wheatley says:

    I know how you feel. I’ve had MdDS continuously for 8+ years. My “rocking” has been substantially relieved by taking an SNRI. – Cymblta for years and now Effexor. Michael

    Like

    • sheryl1815 says:

      Thanks, Michael. I’m glad you’ve found something that helps. I haven’t tried any meds in that group yet, but I’m definitely considering it. I had a bad reaction to Amitriptyline, so I’ve been a little hesitant to try all the others. Hope you continue to have some relief. Sheryl

      Like

  6. janetzol says:

    I have this mdds. I went on a cruise in October and when I got home, I started rocking. It won’t go away. My doctor says there is no cure. Do you know any doctors that have any knowledge about this problem?

    Like

    • MdDS.BDF says:

      A list of health care practitioners who may be familiar with Mal de Débarquement Syndrome is available on our website. We highly recommend taking our informational brochure with you on your visit. You may request a printed brochure by emailing brochures@mddsfoundation.org or you may download it from the Library of mddsfoundation.org.

      At present there are no treatments or therapies proven to be helpful to those suffering with MdDS. If you are experiencing the symptoms of MdDS, we invite you to join one of our online support groups. With membership, you may search through and review the message archives and, of course, ask questions. Our members from 57 countries have a great variety of experiences and advice to offer.
      • Closed Facebook Group: http://www.facebook.com/groups/124894594239599/
      • Private Yahoo Support Group: http://health.groups.yahoo.com/group/mdds_support/

      To gain full access, you will be asked to provide your reason for seeking membership. Please give a brief description of your symptoms, the length of time you’ve had symptoms, or if you have a diagnosis of MdDS.

      Thank you,
      MdDS Balance Disorder Foundation

      Like

    • Cindy Weichert says:

      I have just been approved for treatment at Mt. Sinai Medical Center in New York City after 9 months of having mdds! So excited!

      Like

  7. Sarah says:

    Bless you Sheryl, this is beautifully written and encompasses so much of our daily lives. Worth saving, sharing and I thank you so much for posting it. Best wishes to you and a friendly shore awaits!
    Sarah

    Like

    • sheryl1815 says:

      Thank you, Sarah.
      When I get to the friendly shore, I would like a full day at the spa! And then I’ll take a torch to set fire to the boat I finally disembark from!
      Thank you. Sheryl

      Like

  8. Eileen says:

    What medications have u tried ? And have u found a doc that believes in maldebarquement ? It took sooo many docs but when I finally found the one who listened and believed in me I got the proper meds and my life back. So sorry. I know how u feel 😿

    Like

    • sheryl1815 says:

      Eileen, I’ve tried amitriptyline, nortriptyline, and clonazepam. Didn’t like the side effects on any of them.
      I didn’t have trouble getting diagnosed. Just can’t find anyone with real solutions. It doesn’t seem like anyone else has found anything that consistently works either.
      Best to you. Sheryl

      Like

    • judy fasola for friend joann says:

      Eileen, what dr. and what meds… please…!!!!!!!!!!!!!!!!!!!!!!!

      Like

  9. Doris R. says:

    Sheryl,
    Thank you for writing about my life. It’s difficult for others to realize my feelings and what it is to live with rock and roll. You nailed it! Four plus years later and it has become a part of life, just not my whole life. – – – Continue the good fight and we will all move on, day by day.

    Like

    • sheryl1815 says:

      Thanks, Doris. I’m glad to know other people relate to this. We don’t get to know each other in person, but it helps to know that we are all out there battling to push MdDS to the background and live our lives. Hugs to you. Sheryl

      Like

  10. Marian says:

    Thank you so much for sharing, I feel just the same, but it is hard to explain to any one.I have shewn it to my husband, who does understand and is very patient with me, who also thought it a very well written explanation of what it feels like.

    Like

    • sheryl1815 says:

      Marian,
      Thank you for writing. I’m so glad you found it helpful and that you shared it with your husband. It’s definitely hard some days — and hard to explain. Best to you. Sheryl

      Like

  11. Susan says:

    Sheryl this is the very best description ever, thank you. Now in my 13th year. My symptoms have increased in the last 2 years as ‘my rock’, my husband, has developed Posterior Cortical Atrophy, PCA, devastating. We now rock together, differently, but doing the best we can.

    Like

    • sheryl1815 says:

      Susan,
      Thank you so much. That’s very kind of you to say.
      I’m so sorry to hear you’ve had MdDS for so long, and that your husband has health issues as well. I’m glad to hear he’s been there for you and that you’re finding a way to cope together. I’m sure it’s really hard. My best to you. Sheryl

      Like

  12. amycutrell says:

    Wow! I have tears in my eyes….and on my cheeks 🤧 Very well written.

    Like

  13. Susan Foley says:

    My friend suffers with that I wish it would go away

    Like

  14. Morgan says:

    Thank you. Beautifully explaining the hard to explain. I’m going to show this to my husband who still doesn’t completely understand. And anyone else, instead of trying to explain it myself

    Like

    • sheryl1815 says:

      Thank you, Morgan. My husband mostly gets it, but I wanted him to read so he would know that I’m struggling at times and it’s work to do all the normal things in life. Best to you.

      Like

  15. Thank you for sharing this, it is my life, sadly 😦 I cried like a baby as I read this…thank you…I have shared it on my facebook so others may read it, so many have never heard of this horrible syndrome, I had never heard of it until I was diagnosed with it, thank you xxx

    Like

    • sheryl1815 says:

      Karen, thank you for sharing. I hope we can keep bringing awareness to MdDS. No one ever heard about it until they get it, or know someone with it. Best to you. Sheryl

      Like

  16. Evelina Gervickas says:

    This is exactly how I feel. I’ve been living like this for 13 years now. It’s so hard.
    Thanks for the perfect explanation.

    Like

    • sheryl1815 says:

      Thank you, Karen. I’m so glad you’ve found it helpful. I hope sharing our experiences helps raise awareness. I had certainly never heard of MdDS before I got it. Best to you. Sheryl

      Liked by 1 person

    • sheryl1815 says:

      Thank you, Evilina.
      So sorry to hear you’ve had MdDS do so long. Hope you are having mostly good days. Hugs to you. Sheryl

      Like

  17. Allison Vaughan says:

    Love this. Mine is probably 90% gone but every morning I feel it and every time I am still I feel it. And I’m tired of holding on. But if this is what I am cursed with – so be it.

    Like

    • sheryl1815 says:

      Allison- I’m glad to hear that you are mostly better. I feel like everyone has something they deal with. Ours is just a lot stranger than what most people have ever experienced. Best to you. Sheryl

      Like

  18. Pauline Lynott says:

    What a great detailed story about how I live everyday. Thank you so much for this. God Bless.

    Liked by 1 person

  19. Michelle says:

    Thank you for this! It explains it all so perfectly!

    Liked by 1 person

  20. Michelle Jereb says:

    Sheryl: WOW!!! You captured exactly how I feel. Thank you for being brave and sharing your story. It has blessed me.

    Liked by 1 person

    • sheryl1815 says:

      Michelle, that’s really kind of you to say. I hope people can share it and help loved ones understand a little more.
      Sorry we won’t get to meet in person tomorrow. Hopefully next time!
      Sheryl

      Like

  21. Judith Loree says:

    I relate totally cause I live this experience everyday too. I talk les & less about it & just say I’m having a bad day & the rocking is really bad. But those around me don’t have a clue what that means or seem to really care that just getting dressed is a struggle everything is an increased struggle. I just want to quit but I get mad & fight back & push through the rocking & keep going. But the end of the day I’m so exhausted having been fighting the rocking all day long as I went about my usual chores just pleading the rocking would stop. I dream of one day being normal again & being able to walk a straight line again & not having to fight the waves all day long. But I have so much good in my life so I don’t give up & keep going for all those around me I love.

    Liked by 1 person

    • sheryl1815 says:

      Judith- Well said. It’s a battle to fight through this ever day. By the afternoon, I’m exhausted as well. Hope we all have more stillness someday soon. Sheryl

      Like

  22. Margaret says:

    Sheryl,
    You definitely are a very talented writer in describing exactly how it feels to live with MdDS. Thank you for that…..and all the best!

    Liked by 1 person

  23. Elaine Schlisse. says:

    Beautifully written. It’s difficult for others to understand chronic illnesses. They move on; but you’re still moving. “You STILL have that?” It’s not the flu!

    Liked by 1 person

    • sheryl1815 says:

      Elaine,
      Thank you.
      I know exactly what you mean. I’ve had so many people say that to me. It’s just weird to people that a cruise or other motion activity would cause something that didn’t go away after a day or two. Yeah, it’s definitely not the flu!
      Sheryl

      Like

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