Remission - at least part-time

I don't want to jinx it, but... it looks like my symptoms might be going into remission.

The bobbing feeling is barely noticeable these days, except toward the end of the day when I get tired. Some days are worse, and I can feel the symptoms all the time, but they do not wear me out or prevent me from functioning almost normally. I don't need to take two-hour naps every day anymore, which is nice. Some days I feel almost normal and can even forget about MdDS for a while.

Working on a computer also feels less exhausting, which is good because I am so behind on my assignments right now. Thankfully my teachers were very understanding and told me to take it easy and give myself time to rest. Now I just need to catch up on this mountain of work, and hope the stress doesn't make my symptoms worse again.

Calm after the storm.
(From Pixabay)

The first time when I had these symptoms during the summer, they lasted for about a month and a half. After the cruise in September, they came back and are just now starting to fade. The cruise was two months ago, give or take a few days. So if this is any indication of the duration, then it means that every time the symptoms come back they'll be on for longer periods of time.

It says on the MdDS Foundation site that often people find that if the symptoms return after remission, they're worse and last longer.

So I guess I'll need to be extra careful to not trigger the symptoms by going on trips, unless I happen to have a couple of months free afterwards to rest and manage the consequences.

In a way it's a relief that I know how to keep the symptoms away. Somehow it makes me feel like I am in control of the symptoms. (Well, except that they can come back spontaneously even if I avoid traveling altogether and don't do anything to trigger them...)

Even if I can feel more in control, it still sucks that to control the symptoms I need to give up traveling.

I wanted to visit Japan, Australia and New Zealand one day. I wanted to go to Iceland and bathe in the hot springs. I wanted to do a road trip across the US.

So many places I never got to see, and now I don't know if I ever will...

***

Oh well. Best not to wallow in self-pity. At least I am not dying from this disorder, and as it is I can live normally when I'm on remission.

For now, I need to focus on finishing my university assignments and after that, perhaps I'll allow myself to wallow just a little bit more.

Stress + inadequate sleep + MdDS = bad things

It says on the MdDS Foundation website that there are several things that can make MdDS symptoms worse. Such as stress and lack of sleep.

I have firmly established that this is true in my case.

See, my symptoms started to wane about two weeks after the cruise. At first I didn't get symptoms in the morning, but they'd return when I got tired throughout the afternoon. Then they started staying away until the evening, and then I only noticed the symptoms when I crawled into bed at night. The bed was swaying when I went to sleep, but not in the morning when I woke up.

So essentially, the symptoms had vanished.

But during those two weeks that I did have symptoms, I fell behind on some of the work I should have been doing but was unable to due to the symptoms making me tired and unable to concentrate on anything for prolonged periods of time. So then, as my symptoms decreased, my brain had a jump-start reaction of "ohmygod we're falling behind on all this university stuff! RED ALERT! CALLING OUT ALL STRESS HORMONES, WE NEED TO GET SHIT DONE ASAP!"

...so I began stressing about all the stuff I didn't get done. And by then the pile of unfinished assignments and other stuff had grown so big, that I was overwhelmed and simply didn't know where to start. I prioritized the stuff that had deadlines coming up and rushed through those, but then my stress-riddled brain came to a halt. I didn't know how to divide the tasks at hand to make them more tolerable and organized, and so it seemed like this looming mountain of unfinished things and I had no idea how to chop it into smaller pieces.

In response, my brain shut down completely and pushed away the problem. So I didn't do anything. And the pile of unfinished work grew bigger and bigger.

Then I started losing sleep over the mountain of unfinished stuff.

I went to bed dead tired. I sometimes woke up in the middle of the night, and couldn't sleep for hours because there was a million thoughts racing through my head, and the mountain of unfinished uni work was screaming at me. Then I fell asleep some time later, and woke up in the morning, still stressed and not well-rested at all.

And the swaying and bobbing that had all but ceased to exist, well, it came back.

The symptoms aren't as bad as they were right after the cruise, but they're noticeable again. I feel the swaying when I sit down or stand still, and as an added bonus I feel the stress and lack of sleep in my body. It's like the tiniest sensation of nausea all the time, or this feeling that everything will fall apart, or that the walls are closing in on me. And I want to cry all the time for no reason.

So I sit here, feeling like the chair I'm in is swaying from side to side, with a strangling feeling in my throat and wanting to cry because I am so tired. And I can't get anything done, which adds to the stress and sleeplessness, which then feeds my MdDS symptoms. It's all going around in circles.

I should have been writing my thesis but I haven't. I should have been doing paperwork relating to a client I'm now seeing (as part of my speech-language pathology training), but I haven't. I should have been doing a lot of other things, but I haven't. It feels like the days are passing me by and I'm just sitting here, unable to grab a hold of the time that's going on and on without me.

In addition, there's some illness in the family that's taking its toll on my husband right now, and I don't want to add to the burden. I don't want to be another burden.

I know I should probably downshift and not try and accomplish everything at once, but I can't. I can't just say, "I won't be able to complete this assignment." I don't have that in me. So I forcibly push on.

Through the tiredness. Through the stress.

Through the near-tears moments.

Through the constant swaying and rocking that's starting to affect my concentration again.

I feel like my cognitive function is hanging by a thread. I find myself thinking about dropping out of university (in passing, when everything just feels like it's too much). I sometimes daydream about not having to think so much. Not having to learn so much. It's like my cognitive capacity is reaching its maximum. I feel like I can't learn any more things, and I just want the information flow to stop.

***

If I could step into a time vacuum where I could spend as much time as I wanted but no time would pass in real life, I would.

I would make a nest there, somewhere in between the streams of time, and spend a few cozy years not thinking about anything except for which novel to read next.

I used to love reading novels. Now I have all but stopped, because there isn't enough capacity in my brain to read anything besides what I have to. Last summer, it took me almost two months after the semester was done before I reached for a book. A new book, I mean. When I was bedridden with MdDS in June, I read a lot of books, but they were all ones I'd read before. It's like my brain couldn't handle any new information at the time. By the time I felt like reading something completely new, summer was over, and the cognitive overload was back.

***

These days, I find myself often wondering:
Is this what a burnout feels like?

I mean, I have been studying for almost six years now. First a BA in English and then another in speech-language pathology. Now I'm doing my masters degree and I am so tired all the time.

Perhaps the last straw to push me over my limit was a tiny little neurological illness like MdDS, which, in addition to the demands of the academic world was too much. It feels like my brain has raised its hands in surrender and given up.

I want to shout for help, but who would help me? How can this be helped, when if I drop out of any of my classes now I'll have to redo them in a year's time? It feels like time is the most valuable thing in the world, and I don't have enough of it.

What do I do, when there are so many demands placed on me, but I don't have the capacity to fulfill those demands?

I am behind on my deadlines and I don't even know where to begin untangling this mess of unfinished assignments.

And on top of that, I'm on the deck of my ship again. I thought it had gone away, but either I just had a few good days in between, or then the stress and insomnia got to me. Either way, I'm screwed.





Images from Pixabay.

Setting sail: Mal de Débarquement Syndrome (MdDS)

Greetings!
This is a blog about my experiences with an illness called Mal de Débarquement syndrome, or MdDS balance disorder, or Disembarkment syndrome. This first post is a longer explanation about the disorder, my symptoms and how I got diagnosed.

MdDS is a neurological disorder that occurs after travel, usually sea travel or air travel. It is not clear how the mechanism works, but basically it means that a person suffering from MdDS is unable to regain their "land legs" after travel - meaning, their brain still thinks the surface they stand on is moving. This causes swaying, bobbing and rocking sensations while walking, standing, sitting and lying down. The severity of these symptoms varies from person to person, so some people feel just a slight swaying whereas others can't stand or walk at all without stumbling and falling.

(Right now this image is a pretty big NOPE for me.)

I first experienced MdDS after a trip to New York City in May 2016. I had some weird swaying feelings even when in NYC, but I put it down to jet lag (the time difference between Finland and NYC is 7 hours and the flight takes about 8 hours). When I flew back home, a day or two later I noticed weird swaying sensations, and the surfaces I was walking or standing on seemed unstable. This caused balance problems and fatigue. I saw a doctor after the symptoms had been going on for about a week (most of which I'd spent in bed, unable to do much).

They did a bunch of tests on me, checked that it wasn't my shoulder and neck muscles tied in knots or some infection in my ears; they took blood samples. Everything they came up with, every examination and blood test they tossed at me came back normal. The only thing that my physiotherapist thought was weird was when she made me stand on one foot for a minute. I could do it (although it took a lot of concentration to stand still), but my ankle was constantly making this small movement back and forth at the joint - "it's like you're standing on a moving surface." (That's how I've been telling you I feel like, haven't I?)

In the end they concluded that I was just fine, muscle-wise and in other aspects. "Unexplained balance disorder."

After weeks of inconclusive poking and testing, there was no change. I was still feeling like I was walking on moving or unstable surfaces and every night my bed felt like a hammock that swayed back and forth all night long. But I also noticed something else:
The swaying sensation went away when I was riding a bus or sitting in a moving car.

This eventually led me to MdDS.

Well, actually I think it was my sister-in-law who first sent me a link to an article about a woman who stepped out of a cruise ship nine years back but still, nine years later, felt like she was on a moving ship. So I started researching the subject.

While lying in bed unable to do much physically, I had a lot of time to google things. I researched every possible balance-affecting disorder, and MdDS was the only thing that fit every last one of my symptoms - this weird neurological disorder that makes the sufferer feel like they're on the deck of a moving ship at all times, and is usually triggered by travel. Also, pretty much the only diagnostic criterion that sets MdDS apart from other balance-affecting disorders is the fact that the symptoms go away when the person with MdDS is in passive motion - meaning, sitting in a moving vehicle. And I had just that: when I was riding a bus or sitting in a moving car, I felt normal. Once the car stopped, the symptoms returned.

I was scheduled for a brain MRI to rule out other neurological disorders, such as MS (Multiple Sclerosis). The scan was to be in August, and my symptoms started to go away slowly in July. By mid-July I felt normal again, after a month and a half of swaying and bobbing. I went to the MRI anyway, just to be sure, and it came out normal just like the other tests they'd done on me.

Next, I saw a neurologist who said that my brain was all good, and that he didn't have any idea what could have caused my symptoms. (The bad thing when getting a diagnosis is that MdDS is relatively unknown even to most neurologists, so it's not even considered as an option.) I cautiously asked my neurologist how responsive he'd be if I told him of a theory I had. I said I'd read scientific research on the matter, so it wasn't some hocus-pocus WebMD diagnosis I was offering. He looked skeptical, but listened to me anyway when I talked about MdDS. I told him about the fact that my symptoms went away in a moving car, and how that had led me to suspect my symptoms were due to MdDS. The neurologist actually had to google MdDS because he hadn't even heard of it. After reading about MdDS, he was quiet for a moment, and then admitted that I was probably right... and that this disorder could actually explain the symptoms of a few other patients of his as well. (So I may have also helped other people with MdDS to get the right diagnosis, which is amazing.)

***

So I got diagnosed with MdDS, about a month after my swaying spell had ended. Why did I want the diagnosis anyway, even though I didn't have symptoms anymore?

Because MdDS is like a bad penny - it has a habit of making a comeback.

***

Last weekend, I went on a 24-hour cruise on a ship. I knew there was the risk that my MdDS symptoms would come back, but rather than never doing any travel ever again, I wanted to test if the symptoms actually would come back. For some people with MdDS it's a one-time thing and after the symptoms are alleviated they can go on with their life as normal.

Apparently I'm not one of those lucky people, because three hours after I stepped out of the cruise ship, the bobbing and swaying came back.

That was last Saturday, four days ago.

Four days, during which I have cried, cursed, cried some more, and tried to go on with my life as usual. (It's somewhat possible, though really, really exhausting.)

For me, the swaying and bobbing feeling is relatively low key, meaning on a scale from 1-10 I fall somewhere between 2 and 3 on most days, although the severity of my symptoms can vary throughout the day (usually it gets worse toward the evenings). In practice this means that when I walk, it feels as if I'm walking on a trampoline or some other unstable surface. When I sit down I feel like I'm swaying back and forth, side to side and even up and down, even though I'm perfectly still. When I lie in my bed, the bed feels like a hammock that someone is constantly rocking back and forth.

My symptoms are not bad (compared to some descriptions I've read online from people who have it way worse than me), but they do affect me in various ways: - My balance is worse than it used to be (and I wasn't the most balanced person to begin with). I can't bend down to pick up something without holding onto a wall, and I can't stand still with my eyes closed (I'll fall backwards or forwards). If I have to stand still for a prolonged period of time, I need to hold on to a wall or a table, and even then eventually I get shaky and nauseous from the constant effort standing takes. I shower with one hand constantly on the shower wall so I don't fall when I have to close my eyes to rinse shampoo out of my hair.

- I have to concentrate on many things I used to take for granted. Like standing and walking. I'm constantly stumbling when I walk, and last June when I had my first bout of MdDs I managed to kick my ankles while walking so the insides of my ankles were a scratched and bloody mess. (I took to wearing high-tops pretty soon to stop this from happening.) I've knocked over numerous glasses and mugs when reaching to grab them. Note that I can walk straight and overall appear completely normal to the outside world, but this takes up a lot of energy due to the effort and concentrating I have to put into it.

- Because I have to constantly concentrate on things I'd normally do automatically, I am exhausted all the time. I can sleep for 8 hours and still have to take a 1.5-hour nap in the afternoon because I'm so tired. If I need to go somewhere even for an hour, I need to rest afterwards. Actually, I usually just fall asleep afterwards, whether I want it or not.

- My mind feels foggy all the time and it's harder to concentrate on things and remember things. Following for example powerpoint slides in class is tiring, because I feel like the text is moving when I read it so I need to focus a lot. Naturally this affects my ability to study, because concentrating on a demanding writing or reading task and sitting upright at the same time drains my energy pretty effectively. Thankfully I don't have long days at the uni right now, because I am done after just one 1.5-hour long class. I'd have to drop classes if I had more than one class on a given day, but so far I've been able to manage that one class a day which is all I have right now in my schedule. (Although I do need to rest after that one class.)

- I can't walk half a mile without feeling like I need to lie down afterwards. The easiest position for me to be in is lying down, because then I don't have to constantly concentrate on supporting my muscles to keep my body in balance in the midst of this constant swaying sensation. I can sit for quite a while but that makes me exhausted in the end as well. Standing still is the absolute worst, because it requires so much concentration and effort. I went to choir practice today, and I could just keep standing throughout one song at a time (like 3-5 minutes), then I had to sit down for a bit. I was shaking all over and my heart was racing like 200 bpm after standing still, so it's definitely not an effortless task in my current condition.

- The symptoms get worse when I get tired. Usually I'm relatively fine in the mornings, but throughout the day the swaying and rocking sensations grow more noticeable so then I have to concentrate extra hard to complete my daily tasks. And the effort it takes to concentrate then drains more of my energy, which makes me tired, which makes the symptoms worse. So it's a vicious circle.

***

In conclusion, Mal de Débarquement Syndrome is a debilitating disorder that affects all aspects of my life right now. My last MdDS spell lasted for a month and a half. The most awful thing is that I can't tell how long it'll last this time. The symptoms might go away in a week, or a month. They might last for a year. Or nine years, like they did for that one lady in the article I read. They might never go away. And even if they do, they can come back if I spend too much time in a car, or on a boat, or a train, or an airplane.

And there is no cure or effective treatment available.

So the thing I'm most bummed about is how effectively this shrinks my world. If any longer-lasting trip by any means of transportation can trigger my MdDS, I can't go very far. Or I can, sure, but at what cost? Even if my symptoms go away this time (pleasepleaseplease I hope they do), there's no telling if and when they'll come back, or the symptoms might come back more severe (apparently that's usually the case in recurring MdDS). Or, worst case scenario, the symptoms might come back for good.

Well, my symptoms might already be back for good this time, I can't tell before this goes away. I can only hope this spell of MdDS goes away, and then I'll have to do all in my power to prevent it from happening again. Even if it means never traveling anywhere that's further than a 3-hour car ride.

I just want to say that having this disorder sucks big time and I wish I was making this up. Sure, I am still able to study and do things, but everything costs extra these days when it comes to my energy resources. If I go to class, I probably won't be able to do much else. If I skip class I can do something else that's more fun for me, but then it's at the cost of my studies. I can go to choir practice, but then I don't have the energy to cook decent food, so then it's at the cost of a healthy meal. Life has turned into a game of choices, and I really don't want to play it for the rest of my life. Here's to hoping this swaying spell goes away soon.

Please go away soon.

***

So, this is what I am dealing with right now. If you are someone I know and interact with in real life and I seem tired or dazed or spaced out when we meet somewhere, this is the reason: I am standing on the deck of my personal, invisible ship that is in constant motion, and I'm just trying to stay balanced.

-Satu

***



More information about MdDS: Cha, Y., Brodsky, J., Ishiyama, G., Sabatti, C. & Baloh, R. (2008) Clinical features and associated syndromes of mal de debarquement. Journal of Neurology, 255 (7), 1038.

Cha, Y. (2009).Mal de Debarquement. Seminars in Neurology, 29 (5), 520-527.

Website for MdDS Balance Disorder Foundation

Website for MdDS UK