"Photograph"~Ed Sheeran

Figured I needed to write and catch up with the world. 
So to say I've been busy is an understatement.  As you know, I've been working full time, but did you know I have two side jobs that I do?  I also type press releases for a friend's company and edit books for some author friends.  I love the writing & editing aspects because I love the written word (obviously...um hello there blog).  I've also been studying for a Medical Billing Certification that I've had trouble passing due to anxiety issues.  I've gotten better at working through those, but it is still a very difficult for me during certain events.  I'm also getting ready for a new Girl Scout season to start.  I'm a leader of a multi-level troop which means my girls range in age from 1st grade to 5th grade.  So lots of projects there.  Then there is me being a mom of a 10 & 7 year old who are getting ready to start their school years in two weeks.  Oh and let me not forget that we are taking a family vacation for 5 days to Tennessee, so there is planning for that.  There is also the anxiety of another mountain trip, but I really want to make this trip.  I am so very excited about it and can't wait to spend the time with my family.

So again, I've been busy is an understatement.  But through all of the craziness, I've been feeling pretty good.  I've had some small episodes, especially when some major storms came through the area, but other than that I've been really good.  I've been making sure to get plenty of rest.  I'm not stressing over the small stuff as much as I usually do.  I've taken time for myself by reading as much as I can to have quiet time.  I also have been listening to more music which has helped me stay relaxed.  

Its definitely tough to find things to help you cope with everyday life when you have MdDS, but you find what works for you.  Part of feeling better is trying to stay calm through the storms.  Finding ways to relax that don't trigger symptoms.  My favorite place to go shockingly is either the beach or pool.  Why not rock in a place where you are actually supposed to rock?  I actually love walking in sand.  I move the way my brain wants me to, and if I fall, it doesn't hurt.  The water is a place to just be able to just be.  I don't get in the pool when there are a lot of people.  I usually do this when its just my husband and myself so that I don't have the extra movement from the kids splashing.  The ocean water is a little different.  I don't go out in rougher seas, but when its really calm small waves.  It actually helps my body relax a lot.  Plus sitting in the sun and just getting that added Vitamin D definitely makes me feel much better.
I also read.  I do this by using an e-reader.  I adjust the line spacing, font size and style and the brightness.  I also read short stories on my harder days.  This makes me feel like I've accomplished something.  If I'm feeling really good I'll read the longer novels since I'm able to concentrate longer. 
I listen to music as well.  I alternate between either my headphones that cover my ears completely.  These noise cancelling headphones help block out the rest of the world as I relax.  I also use an ear bud that fits inside my ear canal.  These softer buds help when I'm dealing with ear pressure.  I know it sounds weird.  For most people these types of earbuds bother most people with ear conditions, but for me they actually have the opposite affect.  They help balance the pressure feeling in my ear.  I typically use these more in public as I can hide the cords under my shirts.  They don't get in the way of what I'm doing.  Also I'm able to just use one if I need to be able to hear my surrounds and the people around me.  The music helps me stay focused in chaotic situations while still being somewhat involved in the situations around me.  

Through the craziness of life I have found what works for me. I hope that other MdDSers have found what works for them.
~Sara
 

"Fear"~Blue October

OK, so this song has been stuck in my head for two days and the more I listen to it, I had to write about it.  

So first let me just talk about the video (which may be hard for MdDSers to watch)  But the fact that he is singing these words out into a really rocky ocean spoke even more volumes to me.  The lyrics talk about falling emotionally and mentally, however for us MdDSers getting back up from a literal fall is just has hard to to.  To scream these lyrics out into the world the way that Justin's voice carries is amazing.  

Alright, so the lyrics.  He basically is singing about pushing through and getting back up and moving on.  You don't have to fear anything.  You can push through and be okay on the other side.  There is light on the other side even when you feel like you are in a dark place.  Its about believing in yourself when you didn't think that you could.

"Been running from a pain in me, A feeling I don't understand, Holding me down"

To be told there is no cure, there is no treatment to make your life go back to "normal" and that you will have to adjust to your new "normal" is some of the worst words you can be told.  This goes for more than just MdDS but any chronic disorder, disease, permanent injury.  To be told that your entire life is going to change is so devastating.  Its hard not to fall into a pit of despair and not be able to rise above it all.  

"The beauty is, I'm learning how to face my beast, Starting now to find some peace, Set myself free"

To find that peace with the "new" you is so difficult to do, but you get to a point (time line may vary for each person, mine was a few months) that you realize okay, I cannot let my life pass me by.  I have to do something to "fix" my world.  So I sat with my husband and figured out all of the parts of my life I do have control over and how can I take those parts of my life back.  There are still some things that I cannot do, and that is okay (can't look straight up to the sky, can't watch the trees go by in a car, definitely can't watch NASCAR or any other fast movement).  But I can crawl up the stairs to tuck my kids into bed on my medium symptom days, I can work even on my 7-8 scale days with the help of my co-workers.  I can dance on my low symptoms days (and I be sure to do this even if I'm not in a dance move because I have to prove to myself that everything is going to be okay).  I push myself to travel, go on trips, see the world.  

"I'm staring through the I don't care, It's staring back at me"

I have had to learn to take chances.  Even if it will restart my symptoms, I can't live in the fear that my symptoms and life will go back to the way it was three years ago.  I have to live every minute of my life that I have even on high level symptom days.  I have to be able to look back and say it was totally worth it and I'm ready to do it all again.  

"I don't have to be afraid, I don't have to let the damage, consume me,"

In two weeks I'm heading to Tennessee.  Its the first time I'm traveling through mountains since I was diagnosed.  Its the first time that I will be dealing with extreme heights above sea level while going back and forth and around various mountains, but I have to do this.  I want to live my life with my husband and kids.  I want to take trips with them.  Our plan is go to a theme park, an aquarium, and maybe even horse back riding.  All types of triggers, but I have no fear.  I have to trust in myself.  

"Fear in itself
Will reel you in
And spit you out over and over again
Believe in yourself
and you will walk
Fear in itself
Will use you up and break you down
like you were never enough
I used to fall but now I get back up

I'm moving on
Oh god just move on
Today,
I don't have to fall apart
I don't have to be afraid....
Get back up
Get up"