The Choice is Mine

  Despite the fact that EDS plays a large roll in my life, I still make choices on what I do.  I might make different choices than I once did, but they are still mine.  EDS does not rule my life and take away my life experiences. 
   Yesterday I got home from work (which has been full time for a couple weeks now) and my SI joint was giving me fits.  It was not quiet in the right place and there was some pain.  I knew that I could eleviate the pain if I took a warm Epson salt bath, some meds and went to bed, but I did not do that.  Instead I chose to get my folding chair and head to the ball park for my sons' ball games.  I knew I could not sit on the bleachers, but I wanted to be there.  I took my chair and sat by the fence.  I was so happy I did.  My youngest hit the ball and made it to first.  It was so great to see him do that.  He was so proud and so was I.  I did stay for some of my older son's game, but missed his big plays.  I knew part way through that game that if I did not leave, I would not be able to walk today.  It was my choice to leave and now I have to living with missing my little man steal 3 bases.  But, it was my choice and not my EDS ruling my life.
  I have realized that I needed to explain this to my kids more.  I took my kids to the beach a couple weeks back.  The beach is a hard adventure for me......but one I love.  My boys love the beach too.  It is hard for me to get everyone packed, lunches, sand toys, floats, chairs, towels, a book for me.   Sometimes I am exhausted by the time I finish packing.  Then when we get there, we haul all the stuff I packed down the beach towards the water.  I am glad that my kids have learned they need to help or we won't make it.  After we are there I have to seriously consider if I am going to even get in the water.  One of the reasons we moved to the gulf coast is so I can go to the beach and float.  It truly is one moment in time when I am not hurting.  Allowing myself to float in the salt water and just be.....makes it all worth it.  However, there are days that the current or tides are moving fast and just standing in knee deep water is too much.  Standing there trying to keep myself in one place or even upright sometimes can be murder on my knees, legs, ankles and feet.  Then it is time to play in the sand....thank goodness my boys are old enough now to realize it is not my favorite thing to do.  I still get the "Mom, come look at this" moment, an adventure all its own.  Getting in and out of a beach chair, especially the low ones, is not an easy task.  You don't realize how much leg muscle you use or how much pressure you put on your wrists and shoulders pushing yourself up.  But, as a good mom, I do it.  Can't let them down once we are there.  We usually stay about three hours....that is about all I am good for.  So, we pack it all back up, lug it back up the beach and to the car.  By the time we get home I am wiped out.  There have been many times I just sit when we get home.  It is about then when my oldest will come up to me with tears in his eyes saying he wishes we never went to the beach and he is sorry he hurt me.  Talk about heart breaking........I have to remind him that I am a grown mom and I make the decision as to what I do and don't do.  I let him know that I made the choice to go to the beach and have fun with them.  He did not force me and I knew what would happen.  I made the choice and I live with the consequences.  I never want them to feel like they made me do something to hurt myself or make things harder for me.  It is my choice what I do and I have to deal with the outcome. 
  I am lucky to have an amazing family with wonderful support.   If I decide to do something that will push me too far or hurt myself, my family is there to help.  My boys are wonderful about helping me, they get drinks or ice.....just make sure I am generally as comfortable as I can be.  It is so awesome.  I cannot say enough good about my husband....he takes up all the slack I leave behind.  Never once has he ever complained or been mean about it.  He has told me it was his choice to marry me knowing I had a condition that could cause havoc in our lives.

In the end, it is our choice how we want to live and who we want to be with!

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.