It is Never Far Behind

  My EDS shadow is never far behind.  I have good days when I am able to do everything I want.  Days with no pain, but they are few and far between now.  More likely, I have an almost pain free day followed by a day with pain keeping me plastered in my recliner. 
   EDS seems to rule my life even when I am not thinking about it.  Recently, I took a wonderful trip to Disney with my family.  It was great to see my kids and their reactions the first time they got to see all the magic Disney has to offer.  I loved being there, but EDS followed me.  I was able to get up in the morning and get things going, but by lunch my body was aching and screaming at me to stop.  I am lucky my family is so understanding.....we were able to go back to the room.  I rested and took some pain meds (only because I was not driving any where).  Luckily I have several level of pain meds and I have one that lessens the pain and does not totally fog my brain.  We then went back to the parks in the evening for a couple of hours, but by the end, I nearly needed carried out of the park.  I am sure a tourist or two wondered what was wrong with me as I hobbled like a troll with the speed of snail.  I would make it back to the room just in time to take the "good" pain meds that wipe away the pain, but also my ability to keep my eyes open.  Needless to say, I was not good for anything until the next morning.  The next morning, it was lots of coffee to take the medication hangover away.  And then time to do it again. 
   In the real world and not on a magical vacation I still have EDS following me.  I am usually more aware of it in my daily life.  When I wake up in the morning I have to think about what NEEDS to get done that day and what I WANT to get done that day. Unfortunately, the needs come before the wants.  It makes me sad that days go like this.  So, if I wake up and know the dishes were not done the night before by me or a family member (because the dish fairy won't stop at my house), I have make sure I have the strength to do that.   Then I consider other daily chores, laundry, cooking, cleaning, running to school and back for the boys, getting dressed, and even showering.  I know, seems silly, but I have to think it all through to make sure I am up to the task.  There have been many times when I want to do a whole list of things, but cannot physically make myself do them without damage or a whole lot of help.  
   Some days I wake up, make my list and try to get out of bed.  On days when life is so painful that just putting my feet on the floor hurts, only the absolute have to's get done.  I have to get my kids ready for school, be available to them for homework, make sure we all eat, and that is about it.  I may or may not get out of my PJs on these days.  If I do, it is usually just to put sweats on because I don't like to lie around in my pajamas.  But, some days I just have to give in and make in a pajama day.
   I have two amazing young sons.  They are brilliant and super helpful, but I need to be sure that I am still a good mom.  Being a mom is more important to me than most anything (a close second to being a good wife).  I need to figure out what my two boys have going that day.  If there is baseball at night, I try to keep my day to a minimum.  I know!!! Sounds weird.  It is not that hard for someone without EDS to throw a ball a couple times or hit a ball so the boys can practice catching.  I actually cannot do either thing.  2 shoulder surgeries and I am out of the ball playing time in my life.  Luckily Dad plays with them.  I just get to sit and watch, but even that can get to be too much.  Yes, I am being serious!  I hear people complain about the bleachers all the time, try sitting on them when you are not sure your hips are going to stay in place because it is too hard and too flat.  My husband is great and usually brings a chair.  But if he does not go to the game, I have to figure out how to get my chair to the field from the car.  On a bad pain day, lifting my folding chair is not an option.
  So....as you can see, my EDS shadow follows me all through my day.  I have to stop and think about what I am doing and if it will effect me later.  I have to make sure I have enough left in me to get through all that NEEDS to be done that day and some days not even all the things that need to be done get done.  Some days I say to heck with the needs and do some wants just because I need it.  So, if you are a friend and I cancel, please know it has nothing to do with you....some days I literally just CAN'T no matter how much I WANT to.