"The Light"~Disturbed

The confusing part about MdDS is that it doesn't make any sense.  None.  Its like BAM! here's this syndrome you have that doesn't quite match other sufferers, but somehow you are all linked and now you need to figure out how to cope and live with it with no reasons as to why it happens or how to fix it and make it go away permanently.  The symptoms change for each person who suffers, but a predominantly someone suffering from perpetual rocking/swaying motion.  There are certain remedies that help certain sufferers such as medications, chiropractic manipulations, vestibular therapies, etc.  But what works for one, doesn't work for all.Currently there is no definitely diagnostic study to provide a definite diagnosis of MdDS.  There is no cure for MdDS. 

It's a battle.  A huge battle.  A struggle.

One day you are feeling your "new normal", as I like to call it, because well, yes, this is my new normal....it's definitely not my old normal life.  The next day you are laid out and can't do much of anything.  It can even happen within a day's time, from morning to afternoon.  

I've talked before about the scale that symptoms are rated.  This scale helps MdDSers explain exactly how they are feeling on a day-to-day basis.  It's a way for us to better understand where someone is standing, or in our case rocking/swaying.  My scale fluctuates a lot more lately.  I've noticed stress makes the symptoms worse, weather pressure symptoms pretty much put me out for the day.  Sitting, or laying, and listening to music helps my symptoms calm down, as well as keep up with a good diet and staying hydrated.  

I've recently gotten back into exercising again and I have found there are a lot of movements that I am just unable to do anymore.  Even on the good days, the motions cause too much stimulation around me to make it safe for me to complete the exercises, so I've learned to modify them to work for me.  Burpees are a definite no for me but I can break down the movements with small breaks in between each part and I can do it.  I stay away from face-paced movements and stick with the slower motions and this helps.  The exercising has been helping with my core strength and balance.  But as much as I love exercising, there are days that its just impossible for me to do any of it.  However, I'm learning what new things I'm capable of doing and what are some of my new limitations. 

Every day is a learning experiment.  It's learning what your limitations are for the day and being okay with it.  It is knowing when to make a judgment call for not only yourself but those around you and decide if you should stay home or go out in public. 

Unfortunately with there being very little information about MdDS out there in the general population, for most of us the choices are taken from us.  Others don't understand what you are dealing with, how it feels and how to deal with someone with this syndrome.  I can't just pretend like it doesn't exist.  I can't make it temporarily go away so I can go into work for a couple of hours or drive to the store or walk around a mall.  I can't just "walk normal" or stand still while talking to you.  Sometimes it is just not a possibility.  

Then again, sometimes I will be doing well that day and I am standing straight.  I'm dancing and jumping around the room.  I'm running.  I'm bending over and standing back up with ease.    No I'm not faking my symptoms or exaggerating what is happening with me.  I'm just having a better day.  I really really like those days.

So yea, MdDS is confusing.  Mind-boggling actually.  But MdDS is just a part of what I deal with every day.  And I'm still coping and moving forward, even if its a crooking motion forward.