I had a horrendous MdDS flare up. I am no stranger to these flare ups, but this was one of the worst ever, and it tested every single one of my coping skills.
Let’s start with what set it off. I stepped off a curb. I didn’t fall, trip or step awkwardly. I simply stepped off like I do every single day on my morning walk. But in this particular instance, I noticed my head felt weird. That’s the best way I can describe it. Weird. But unfortunately, I’m familiar with this weird, and I was pretty sure it was going to be the start of something very bad.
By time I got home, I was well on my way to a full blown MdDS episode. These episodes are different for everybody, but here’s what they look like for me:
- Intense, unrelenting nausea that is worsened by: moving, lights, looking at any screen, anything moving in front of my eyes — traffic, my hands when I wash dishes, a drawer closing, to name a few.
- Headaches that come and go.
- Fatigue behind my eyes.
- Inability to focus or concentrate.
- A gravitational pull inside my head that makes me feel like I’m falling backwards — THE WORST feeling.
In other words, Man Down. In a very big way.
I am not exaggerating when I say there is not one thing other than sitting in a chair reading a paper book that does not make all my symptoms worse. And the intensity of my symptoms is not minor. It’s major, major, major. Remember, I have been sick for twelve years. I am used to playing hurt. I am used to powering through. These symptoms are non-power through-able.
So, I sit. And I read. And I stand in front of my TV watching stripes.
Yeah, it’s weird. There isn’t much I can do about the nausea and headaches, etc. except try not to aggravate them. But I can do something about the gravitational pull. For reasons I will never understand, watching stripes corrects the pull. Instantly. The only catch is the pull often comes back several times in the course of a flare up, so I have to do the stripes treatment each time.
The stripes treatment is at the recommendation of Mt. Sinai hospital in New York City, where I have twice gone for extensive MdDS treatment. The treatment involves all manner of looking at stripes, spinning in a chair while looking at stripes, etc.
The at home version temporarily makes me more nauseated, but it takes care of the terrible pulling feeling inside my head, so it’s worth it.
This particular MdDS episode lasted a little over two weeks. It was rough, I’m not going to lie. But every time I got even close to feeling sorry for myself, I paused to remember how lucky I am. Look, I did basically nothing for two weeks. That’s not my choice by a long shot, but what a blessing it was an option for me. I kept reminding myself about that over and over again. If I was still chasing a toddler, or had to work or didn’t have a supportive husband, doing nothing would be incredibly difficult.
Sure, I had moments of lamenting all that I was missing or not accomplishing. Also, it’s just hard to be with nausea and physical pain all day. But when those thoughts arose I thought about all the people who deal with so much worse with much fewer resources, and in that light, it was virtually impossible to feel sorry for myself.
I’m mostly better now, which is why I’m able to write this post. However, the difficult reality is these spells are part of my life. So it’s not a question of if I have another one, it’s when. It’s hard to live with that knowledge, but I try to live my life a day at a time with the confidence I have the coping skills to handle the next episode, whenever it comes.