Back to the Grind

Still haven't been back to PT since vacation.  Finally taking a few days off work to get back in the game.  Lately I have been researching dysautonomia.  It's been rough the few warm days we've had so far.  Not sure how I'm going to make it this Summer.  It seems like the cause is up for speculation as well as the method of treatment.  This is rather discouraging to me.  I'd rather put it off than start a new med based on speculation.  Looks like I'm going to have to be a little more open minded if I want to be more comfortable this Summer.

How does EDS feel to me?

This is difficult for me to write.  I don't see myself regularly as a line-up of symptoms.  It's never as bad as the list might seem since I don't experience the whole list at once.  In general, I think I do pretty well.  Most of the time, I make it through my work day without any serious issue.  Some days, I get in a good workout.  Many of these things don't even bother me much because I don't remember life without this.




EDS is...


Reaching to grab something and my fingers bend backwards, refusing to hold it.


Suddenly dropping something that I thought I had a good hold on.  Note that many of my dishes are cracked.  -Just yesterday, I was washing out my pyrex dish at work and, in front of all of everyone in the break room, I dropped it (forcefully) and full of water.  Dirty water went everywhere!  Doing dishes is the worst!  That happens every time.


Neck pain that encompasses my entire head, jaw, eyes and shoulders.  I have no words to describe the pain that makes me throw up repeatedly for hours.  It's the worst thing I have ever experienced.


Muscle spasms that feel like rocks to the touch and twitch like a TENS unit.  I have a few that never release, no matter how much muscle relaxant I take.


Shoulders that dislocate several times a day.  It's always surprising when I sneeze and basically jerk them out of the socket while trying to cover my mouth.  As if a sneeze wasn't surprise enough.


Collar bones that snap into place first thing in the morning when I roll over to turn off my alarm.


Ankles that seem to separate when my feet leave the ground while I jog or run.  This sends a searing pain through them.  I still ponder running a marathon one day.  Maybe... Probably not :) that's crazy.


My low back and hips are so loose, I'm not even sure how to comment on them.  It's been an ongoing task to keep it at bey for the last 11 years, so I don't think I could do it justice in a few words.


Elbows that need to be yanked back into place when they get stuck in a bad position.


Dizziness.


Fatigue.


So, in case you didn't know much about EDS or how it affects me, this is some of what it is to me.

What have I learned from EDS?

I have learned...


... to give people a chance.  For instance, when someone is crabby, short tempered, quiet, or anything else that could be off-putting, I find myself thinking that I shouldn't really judge.  I don't know what brought them to that point today.  Overall, I am much more gentle with people than I used to be.


... to live today.  If it is a bad day, I will make it through and hope for a better day tomorrow.  If it is a good day, cherish it.


... that certain things one might not have thought are a privilege.  Being able to work, working out, going out and being among friends.  These are all things for which to be thankful.


I'm still working on trying to do what I can and not push myself for reasons that are not as important as I think.


These are the major lessons for now, but I'm sure if I gave it some time, there are plenty more to add.

What is EDS to me?

Feeling like others think you are a flake because suddenly 'you have to go' or 'you aren't yourself today' and 'you just aren't up to going out tonight.'


Wishing everyone could see and understand what was going on with me, while at the same time wishing nobody could see.


Working hard to make sure I am supporting myself, but not sacrificing my body by overextending myself.


Being sad or angry every time I have to cut my hours at work or change my schedule because I simply can't manage it anymore.


Giving up on one thing at a time and telling myself that it is not a big deal- just one more little thing I can't do.


Working to accept that my body has limits.

A Simple Thought...

It's tough to be a zebra in a pack of horses.  Especially when I feel I am the only one who sees my stripes.

Travel

Arrived home a few days ago from a Caribbean cruise.  The cruise was amazing!  4 excursions over one week.  Glad to be back though.


Does anyone else feel like travel is incredibly overwhelming?


I had my own pillow, but the bed was less than adequate.  I feel like a hard bed just pushes against every joint in my body and causes everything to dislocate/sublux.  It's a nice surprise to wake up and at every movement feel something pop.  I describe my shoulders and clavicles popping back in like, "being punched in the shoulder from the inside."  I always worry beforehand about those kind of accommodations.  All-in-all, I think it went well.  By the 3rd excursion day, we nixed the kayaking and snorkeling for a day of lounging at the beach and I got a massage by one of the locals.  We did the same thing the 4th day, although I probably should have resisted flinging myself onto and inflatable and racing to the top.


Today, I'm topping off my vacation with a raging sinus infection and I can't tell if the dizziness is from the sinuses, my neck, the baseline dizziness that I've always had worsening or the ship.  Let's call it the ship for now and not worry!


Lots of rest before back to work this week and then, next week, back to my usual PT and workouts.